Close
About
FAQ
Home
Collections
Login
USC Login
Register
0
Selected
Invert selection
Deselect all
Deselect all
Click here to refresh results
Click here to refresh results
USC
/
Digital Library
/
University of Southern California Dissertations and Theses
/
Oral care and sensory sensitivities in children with autism spectrum disorders
(USC Thesis Other)
Oral care and sensory sensitivities in children with autism spectrum disorders
PDF
Download
Share
Open document
Flip pages
Contact Us
Contact Us
Copy asset link
Request this asset
Transcript (if available)
Content
ORAL CARE AND SENSORY SENSITIVITIES IN CHILDREN WITH
AUTISM SPECTRUM DISORDERS
by
Leah I. Stein
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY)
December 2013
Copyright 2013 Leah I. Stein
APPROVAL
Name: Leah I. Stein
Degree: Doctor of Philosophy (Occupational Science)
Title of Dissertation: Oral Care and Sensory Sensitivities in Children with
Autism Spectrum Disorders
Date Approved: September 20, 2013
Dissertation Committee:
_____________________________________________
Chair – Dr. Sharon A. Cermak, EdD, OTR/L, FAOTA
Professor
Division of Occupational Science & Occupational Therapy
at the Herman Ostrow School of Dentistry of USC
University of Southern California
_____________________________________________
Dr. Florence Clark, PhD, OTR/L, FAOTA
Associate Dean and Professor
Division of Occupational Science & Occupational Therapy
at the Herman Ostrow School of Dentistry of USC
University of Southern California
_____________________________________________
Dr. Michael E. Dawson, PhD
Professor
Department of Psychology at the USC Dornsife College of
Letters, Arts & Sciences
University of Southern California
_____________________________________________
Dr. José C. Polido, DDS, MS
Assistant Professor
Herman Ostrow School of Dentistry of USC
University of Southern California
Head - Division of Dentistry, Children’s Hospital Los Angeles
Dedicated to my father,
David Stein, who always wanted more
for me and believed that I could do anything.
iv
ACKNOWLEDGMENTS
I would like to express my deepest appreciation and sincere thanks to the many
advisors who supported me throughout my PhD experience and assisted me with my
dissertation. Dr. Sharon Cermak, my committee chair, has not only been my teacher and
mentor, but also a friend. I feel so fortunate that you came to USC the same year I
returned to pursue my PhD. Not only do I foresee many future research collaborations, I
truly believe we have developed a relationship that will stand the test of time! I would also
like to thank Dr. Florence Clark who was the first person to encourage me to pursue my
PhD. Your support and feedback throughout my dissertation has been invaluable. I am
constantly inspired by your vision, passion, and dedication to advancing our profession by
identifying and leading individuals like me into the fold of research scientists. Dr. Michael
Dawson requires acknowledgment as he singlehandedly opened my eyes to the incredibly
interesting world of psychophysiology and taught me everything I know about
electrodermal activity (EDA). Mike, you literally wrote the book on EDA and I feel so
privileged to have learned from you. You have always been so supportive yet insightful in
your feedback and I look forward to continuing to work with you in the future. Finally, thank
you to Dr. José Polido who agreed to collaborate with occupational therapy without a
second thought. Your open-mindedness and dedication to improving oral care for children
with special health care needs is truly inspirational. Your contributions to my research are
a testament to your ability to be a catalyst in the positive advancement of clinical dental
practice. I look forward to working with each of you again and eagerly await our future
collaborations!
v
I would like to thank Children’s Hospital Los Angeles and all the Dental Clinic staff.
From the day I entered the clinic, I have always been greeted with a smile and support.
Working with each of you has taught me so much—I now know more about oral care than I
ever thought possible. I would especially like to thank Mae Aghili. You are an incredible
pediatric dentist and a compassionate, caring human being. You were a phenomenal
team player in this research process, and I consider myself fortunate to have known and
worked with you. I would also like to thank all the families who participated in our research.
You allowed me and the rest of our research team to enter your lives; you shared our
vision and desire to make oral care easier, more efficient, and a better experience for
children with ASD.
I am forever grateful, as this research would not have been possible without
generous funding from the University of Southern California Division of Occupational
Science and Occupational Therapy, the California Foundation of Occupational Therapy,
the Herman Ostrow School of Dentistry, and the National Institute of Dental and
Craniofacial Research (1R34DE022263-01).
Last but not least, I would like to thank my family and friends for their support over
these last five years. Endless thanks to my mother who has always pushed me to want
more, be more, and work hard to achieve my goals. Throughout all aspects of my life you
have provided unwavering encouragement and support. I could not have asked for a better
role model. Finally, thanks for editing all those papers in high school and college – I think it
might have paid off! Oliver Lopez-Najera, you are an incredible SAS teacher and a
statistics lifesaver; it has been great getting to know you and you will always be Dr.
SandOliver to me! Lastly, thank you to Jesse Duker for inadvertently introducing some
balance in my life by giving me a reason to leave the office and come home.
vi
TABLE OF CONTENTS
List of Tables ...................................................................................................................ix
List of Figures ..................................................................................................................xi
Abbreviations .................................................................................................................. xii
ABSTRACT ................................................................................................................... xiv
CHAPTER ONE: Overview – Rationale and Significance
Introduction ...................................................................................................................... 1
Study One ....................................................................................................................... 3
Study Two ....................................................................................................................... 3
Study Three ..................................................................................................................... 5
Summary ......................................................................................................................... 6
CHAPTER TWO: Literature Review
The Importance of Oral Care ........................................................................................... 8
Good Oral Practice..................................................................................................... 8
Dental Caries ............................................................................................................. 9
Consequences of Inadequate Oral Care .................................................................. 11
Oral Health in Vulnerable Populations ........................................................................... 12
Low Income .............................................................................................................. 12
Hispanic ................................................................................................................... 13
Special Health Care Needs ...................................................................................... 14
Oral Care in Children with Special Health Care Needs: Focus on ASD ........................ 15
Risk Factors ............................................................................................................. 16
Inadequate Oral Care ......................................................................................... 16
Co-occurrence of other Disorders ....................................................................... 17
Dietary Habits ..................................................................................................... 18
Damaging Oral Habits ........................................................................................ 21
Difficulty Accessing Professional Services ......................................................... 21
Personal Characteristics that Act as Barriers for Children with ASD ........................ 28
Communication ................................................................................................... 28
Need for Rigidity and Routine ............................................................................. 29
Dental Fear and Anxiety ..................................................................................... 30
Behavior ............................................................................................................. 33
Sensory Processing ............................................................................................ 36
Sensory Processing Difficulties: Behavior .......................................................... 37
Sensory Processing Difficulties: Psychophysiology ............................................ 41
Environmental Characteristics that Act as Barriers for Children with ASD
Sensory Stimuli, Specifically in the Dental Environment ..................................... 54
Summary ....................................................................................................................... 56
vii
CHAPTER THREE: Study One – Oral Care Experiences and Challenges in Children
with Autism Spectrum Disorders
Overview ....................................................................................................................... 59
Literature Review .......................................................................................................... 59
Methodology .................................................................................................................. 61
Design ...................................................................................................................... 61
Participants .............................................................................................................. 61
Instruments .............................................................................................................. 62
Recruitment and Procedures ................................................................................... 63
Data Analysis ........................................................................................................... 65
Results .......................................................................................................................... 65
Participants ............................................................................................................. 65
Oral Care at Home .................................................................................................. 68
Oral Care at the Dentist .......................................................................................... 70
Access to Oral Care ................................................................................................ 74
Multivariate Results ................................................................................................ 76
Discussion ..................................................................................................................... 78
Conclusion ..................................................................................................................... 81
CHAPTER FOUR: Study Two – Oral Care and Sensory Over-Responsivity in Children
with Autism Spectrum Disorders
Overview ....................................................................................................................... 83
Literature Review .......................................................................................................... 84
Methodology .................................................................................................................. 87
Design (Recruitment & Procedures) ........................................................................ 87
Participants .............................................................................................................. 88
Instruments .............................................................................................................. 90
Data Analysis ........................................................................................................... 91
Results .......................................................................................................................... 92
Between-Group Analyses: Typical vs. ASD ............................................................. 92
ASD Within-Group Analyses: Sensory Over-Responders vs. Sensory Not
Over-Responders ..................................................................................................... 94
Oral Care at Home .............................................................................................. 96
Oral Care at the Dentist ...................................................................................... 97
Discussion ................................................................................................................... 103
Conclusion ................................................................................................................... 107
CHAPTER FIVE: Study Three – Sensory Responsivity as Measured by Electrodermal
Activity in Children with Autism Spectrum Disorders in the Dental Environment
Overview ..................................................................................................................... 108
Literature Review ........................................................................................................ 108
Purpose and Hypotheses ....................................................................................... 115
Methodology ................................................................................................................ 116
Participants ............................................................................................................ 116
Recruitment and Procedures ................................................................................. 117
Instruments ............................................................................................................ 121
Data Analysis ......................................................................................................... 127
viii
Results ........................................................................................................................ 129
Descriptive Variables ............................................................................................. 129
Hypothesis One ..................................................................................................... 131
EDA at Baseline................................................................................................ 131
EDA during Oral Care ....................................................................................... 133
Hypotheses Two and Three ................................................................................... 138
ASD Diagnosis ................................................................................................. 138
General Anxiety: CASI-Anx .............................................................................. 138
Dental Anxiety: CFSS-DS ................................................................................. 139
Distress Behavior During Cleaning: Anxiety and Cooperation Scale,
Frankl Scale, CDBRS ....................................................................................... 141
Hypothesis Four ..................................................................................................... 147
Exploratory Analyses ............................................................................................. 150
Stability of EDA from Baseline to Dental Cleaning............................................ 150
Relationship of SCL and NS-SCR Group Placement........................................ 155
Change Score from Baseline to Dental Cleaning ............................................. 156
Magnitude of NS-SCR Responses ................................................................... 160
Comparison of Only Low- and High-Responding Groups ................................. 160
Discussion ................................................................................................................... 163
Conclusion ................................................................................................................... 171
CHAPTER SIX: Conclusion
Overview ..................................................................................................................... 173
Study One ................................................................................................................... 173
Study Two ................................................................................................................... 175
Study Three ................................................................................................................. 177
Summary ..................................................................................................................... 180
Implications for Occupational Science and Occupational Therapy .............................. 183
REFERENCES ............................................................................................................ 187
APPENDICES
Appendix A: Dental Care in Children Survey...................................................... 213
Appendix B: Study 1 – Survey Study IRB Approval (HSIRB) ............................. 219
Appendix C: Study 2 – Focus Group IRB Approval (HSIRB) .............................. 221
Appendix D: Study 3 – EDA Study Approval (CCI) ............................................. 223
Appendix E: Study 3 – EDA Study Approval (HSIRB) ........................................ 225
Appendix F: Study 3 – Measure of General Anxiety (Child and Adolescent
Symptom Inventory – Anxiety Scale) ............................................. 227
Appendix G: Study 3 – Measure of Dental Anxiety (Children’s Fear
Survey Schedule – Dental Subscale) ............................................ 228
Appendix H: Study 3 – Measure of Anxiety and Cooperation during
Dental Cleaning (Anxiety and Cooperation Scale) ......................... 229
Appendix I: Study 3 – Measure of Anxiety and Cooperation during
Dental Cleaning (Frankl Scale) ...................................................... 230
Appendix J: Study 3 – Measure of Overt Distress Behavior in Dental
Environment (Children’s Dental Behavior Rating Scale)................ 231
ix
LIST OF TABLES
Table 2.1: Electrodermal Measures, Definitions, and Typical Values Used
for Long Lasting situations ............................................................................ 44
Table 3.1: Study One – Descriptive Statistics of Gender, Age, Race, Hispanic
Status and Parental Education ...................................................................... 67
Table 3.2: Study One – Home Oral Care Variables by Group (Typical vs. ASD) .......... 70
Table 3.3: Study One – Dental Office Oral Care Variables by Group
(Typical vs. ASD) ........................................................................................... 74
Table 3.4: Study One – Access to Oral Care Variables by Group (Typical vs. ASD) .... 76
Table 3.5: Study One – Multivariate Regression Results for all Oral Care
Variables after Adjusting for Age, Gender, Hispanic Status and
Paternal Education Level .............................................................................. 77
Table 4.1: Study Two – Sensory Sensitivity by Group (ASD vs. Typical) ...................... 94
Table 4.2: Study Two – Descriptive Characteristics of ASD Respondents .................... 95
Table 4.3: Study Two – Home Oral Care Variables by Sensory Responsivity in
Children with ASD (SOR vs. SNOR) ............................................................. 97
Table 4.4: Study Two – Dental Office Oral Care Variables by Sensory Responsivity
in Children with ASD (SOR vs. SNOR) ....................................................... 102
Table 5.1: Study Three – Descriptive Statistics of Gender, Age, Race, Hispanic
Status and Parental Education .................................................................... 130
Table 5.2: Study Three – Distribution of Children with ASD and TD Children into
Responsivity Groups during Baseline and Dental Cleaning ........................ 137
Table 5.3: Study Three – Summary Table of Between-Group and Within-Group
Analyses for Anxiety and Distress Behavior Variables ................................ 146
Table 5.4: Study Three – Correlations between Sensory Processing (SSP) and
Electrodermal Activity during Dental Cleaning in TD and ASD Groups ....... 149
Table 5.5: Study Three – Correlations between SSP Scores and Electrodermal
Activity during Dental Cleaning in children with ASD and TD children
with “definite” and “probable” differences in Sensory Processing ................ 150
Table 5.6: Study Three – Correlations of SCL Across Different Phases of Dental
Cleaning in TD and ASD Groups ................................................................. 151
x
Table 5.7: Study Three – Correlations of NS-SCR Frequency Across Different
Phases of Dental Cleaning in TD and ASD Groups .................................... 151
Table 5.8: Study Three – Agreement between SCL and NS-SCR Group Assignment
in TD Children and Children with ASD at Baseline ...................................... 155
Table 5.9: Study Three – Agreement between SCL and NS-SCR Group Assignment
in TD Children and Children with ASD during Dental Cleaning ................... 156
Table 5.10: Study Three – SCL and NS-SCR Frequency Change Scores from
Baseline to Dental Cleaning in Children with ASD and TD Children ........... 159
Table 5.11: Study Three – NS-SCR Frequency Low- versus High-Responder
Comparisons ............................................................................................... 162
xi
LIST OF FIGURES
Figure 2.1: Three Electrode Placements for Recording Electrodermal Activity ............. 43
Figure 2.2: Two Hypothetical Skin Conductance Recordings during 60
seconds of Rest ............................................................................................. 44
Figure 2.3: Frequency Distribution of Mean Log Skin Conductance
Levels for Patients with Schizophrenia and Control Subjects ........................ 53
Figure 2.4: Categorization of High and Low Arousal Subgroups within Children
with Asperger's Syndrome or High Functioning Autism ................................. 53
Figure 5.1: Schematic of EDA Equipment ................................................................... 121
Figure 5.2: Distribution of Skin Conductance Level for TD and ASD Children
at Baseline .................................................................................................. 131
Figure 5.3: Distribution of NS-SCR Frequency for TD and ASD Children at
Baseline ...................................................................................................... 131
Figure 5.4: Percentage of Children in each Skin Conductance Responder
Group at Baseline ........................................................................................ 132
Figure 5.5: Percentage of Children in each Non-Specific Skin Conductance
Response Responder Group at Baseline .................................................... 133
Figure 5.6: Percentage of Children in each Skin Conductance Responder
Group during Dental Cleaning ..................................................................... 135
Figure 5.7: Percentage of Children in each Non-Specific Skin Conductance
Response Responder Group during Dental Cleaning ................................. 136
Figure 5.8: Mean Raw SCL Over Time during Dental Cleaning in TD and ASD
Groups, by SCL Responsivity Group ........................................................... 152
Figure 5.9: Mean NS-SCR Frequency Over Time during Dental Cleaning in TD and ASD
Groups, by NS-SCR Responsivity Group .................................................... 152
Figure 5.10: Raw SCL Over Time in Individual TD Children Characterized by SCL
Responsivity Group ..................................................................................... 153
Figure 5.11: Raw SCL Over Time in Individual ASD Children Characterized by SCL
Responsivity Group ..................................................................................... 154
xii
ABBREVIATIONS
AAPD, American Academy of Pediatric Dentistry
ADA, Americans with Disabilities Act
ADHD, Attention-Deficit/Hyperactivity Disorder
ADOS, Autism Diagnostic Observation Schedule
ASD, Autism Spectrum Disorder
dB, decibels
CAHMI, Child & Adolescent Health Measurement Initiative
CASI-Anx, Child and Adolescent Symptom Inventory – Anxiety Scale
CDBRS, Children’s Dental Behavior Rating Scale
CDC, Centers for Disease Control and Prevention
CFSS-DS, Children’s Fear Survey Schedule – Dental Subscale
CHLA, Children’s Hospital Los Angeles
CODA: Commission on Dental Accreditation
CNS, Central nervous system
CSHCNs, Children with special health care needs
DISCO, Diagnostic Interview for Social and Communication Disorders
ECC, Early Childhood Caries
EDA, Electrodermal activity
EEG, electroencephalography
HHS, U.S. Department of Health and Human Services
HR, high-responders
Hz, hertz
xiii
IAN, Interactive Autism Network
LR, low-responders
MR, mid-responders
NIDCR, National Institute of Dental and Craniofacial Research
NS-SCR, nonspecific skin conductance responses (also known as SFs)
OHRC, National Maternal and Child Oral Health Resource Center
PDD-NOS, Pervasive Developmental Disorder, Not Otherwise Specified
SCL, skin conductance level
SCR, skin conductance response
SensOR, Sensory Over-Responsivity Inventory
SEQ, Sensory Experiences Questionnaire
SF, spontaneous fluctuations (also known as NS-SCRs)
SMD, Sensory Modulation Disruptions/Disorder/Dysfunction
SNORs, Sensory Not Over-Responders
SORs, Sensory Over-Responders
SPD, Sensory Processing Disorder/Dysfunction
SSP, Short Sensory Profile
TD, Typically developing
UCEDD, USC University Center for Excellence in Developmental Disabilities
μS, microsiemens (also knowns as μmho or micromhos)
VABS-II, Vineland Adaptive Behavior Scales II
xiv
ABSTRACT
It is indisputable that good oral health is important to both psychological and
physiological health. However, despite the importance of oral care, disparities exist for
children with special health care needs (CSHCNs) in the access to and practice of oral
care in the United States, with oral care being the most frequently cited unmet health care
need; one group of CSHCNs that may be at particular risk for poor oral health is children
with autism spectrum disorders (ASD). The three studies in this dissertation aimed to
investigate challenges encountered in children with ASD in regard to oral care and to
examine if behavioral and physiological measures of sensory processing difficulties were
related to difficulty with oral care.
In the first study we explored the differences between children with ASD and their
typically developing (TD) peers in relation to aspects of oral care. Participants were 396
parents of children with ASD or typically developing children ages 2-18 years of age.
Parents completed a 37-item questionnaire designed by authors to elicit information about
oral care in the home and dental office. Significantly more parents of children with ASD in
comparison to parents of typically developing children reported difficulty across almost all
oral care variables explored, including oral care in the home, oral care at the dentist, and
access to oral care. This study indicates that children with ASD experience greater
difficulties and barriers to care in both the home and dental office settings than their
typically developing peers.
In order to investigate the relationship between sensory sensitivities and oral care
difficulties, we conducted study two. Participants included 396 parents of 2- to 18-year-old
children with ASDs or TD who completed a questionnaire about oral care in the home and
xv
dental office. We found that (1) children with ASD vs. TD children were reported to have a
significantly greater prevalence of sensory over-responsivity across all sensory domains,
and (2) children with ASD characterized as “sensory over-responders” exhibited a
significantly greater prevalence of oral care difficulty in the home and dental office vs.
children with ASD who responded more typically to sensory stimuli (“sensory not over-
responders”). This study provides further evidence for the impact of sensory processing
problems on oral care, both in the home and dental office. Methods to best serve children
with autism spectrum disorders may include strategies that alter the sensory
characteristics of the dental environment as well as interventions to reduce children’s
sensory sensitivities.
As the results of study two suggested that sensory processing difficulties are
associated with difficulties with oral care on parent-report behavioral measures, the third
study examined if there is a physiological difference between arousal and sensory
responsivity in children with ASD and TD children during oral care, utilizing electrodermal
activity collected during a routine dental cleaning. Additionally, it investigated what
variables were related to electrodermal activity (e.g., diagnosis, parent-report of behavioral
sensory processing difficulties, general anxiety, dental anxiety, uncooperative/distress
behavior). Participants included 6- to 12-year-old children with ASD or TD children
undergoing a routine dental cleaning (n=22 ASD, n=22 TD). Although we found no
significant differences in the distribution of children with ASD and TD children into EDA
responsivity groups (low-, mid-, and high-) at baseline, a trend towards higher EDA existed
in children with ASD in all three EDA responsivity groups compared to the TD children.
When comparing the ASD group with the TD group as a whole (not separated into
responsivity groups), a significant difference was found between groups on EDA change
xvi
score from baseline to dental cleaning, with children with ASD exhibiting an increase in
EDA while TD children exhibited a decrease. This suggests that while children with ASD
responded to dental cleaning with physiological stress and anxiety, TD children exhibited a
decreased sympathetic response and habituation to the stimuli experienced during dental
cleaning. Additionally, increased EDA during dental cleaning, suggesting increased
physiological stress and anxiety, was correlated with dentist- and researcher-report of
overt distress behavior during dental cleaning and parent-report of behavioral sensory
processing difficulties in children with ASD.
Together, the results of these three studies enhance our knowledge of the
experiences of children with ASD during oral care and provide a platform to encourage
future research in regard to the relationship between sensory processing and oral care and
support the development of innovative treatment techniques that will address the sensory
characteristics of the dental experience.
1
CHAPTER ONE: OVERVIEW
It is well-established that oral care is an important component of pediatric health
care. Poor oral health and the diseases that may result from it can lead to difficulties
with eating, speech impediments, pain, sleep disturbances, missed days of work or
school and decreased self-esteem, causing a negative effect on one’s health and
quality of life (Casamassimo, 1996; HHS, 2000; Owens et al., 2006). However, despite
the importance of oral care, disparities exist for children with special health care needs
in the access to and practice of oral care in the United States, with oral care being the
most frequently cited unmet health care need (CAHMI, 2011a; Davis, 2009, Lewis et al.,
2005; Lewis, 2009; Newacheck et al., 2000a; 2000b).
One group of children with special health care needs that may be at particular
risk for poor oral health is children with autism spectrum disorders (ASD). Although
autism itself is not a direct cause of dental deficit, it is considered to be an indicator of
high caries risk, with caries incidence linked to behaviors and life factors that are
prevalent to the disorder (Marshall et al., 2010; Murshid et al., 2011). Children with ASD
face many barriers to the utilization and access of oral care, including but not limited to:
inadequate numbers of dentists trained and willing to work with children with ASD and
other special health care needs (Casamassimo et al., 2004; Crall, 2007; Dao et al.,
2005; Weil & Inglehart, 2010), financial issues (Brickhouse et al., 2009; Crall, 2007;
Edelstein, 2007; Fenton et al., 2003), possible legal issues (Manley, 2004; Morris,
2004), and both environmental and non-environmental (personal) characteristics that
act as barriers to proper oral care for children with ASD (Crall, 2007; Marshall et al.,
2007; 2008; NIDCR, 2004).
2
The identification of potential barriers to treatment is essential in order to improve
the oral health of children with ASD. By understanding the obstacles to aspects of oral
care this population faces (e.g., in the home, during professional services, access to
care), dentists and other health care professionals can work to minimize the difficulties
encountered by children with ASD. Personal characteristics of children with ASD may
also pose barriers to oral care. These include, but are not limited to: impairments in
communication, need for rigidity and routine, uncooperative behaviors, and difficulties
with sensory processing. The relationship between sensory processing difficulties and
oral care has only recently been investigated by examining the exhibited behaviors of
children with ASD with sensory processing difficulties during oral care (Stein et al.,
2011; 2012b; 2013). The exhibition of these uncooperative behaviors may be
associated with physiological responses to sensory stimuli during oral care. Therefore,
understanding the physiological responses to sensory stimuli during oral care and their
possible relationship to the behaviors exhibited during treatment will provide dentists
and other practitioners, such as occupational therapists, insight into this experience.
This insight may help professionals design new methods and procedures to best serve
children with ASD.
Three related studies have been designed to investigate challenges encountered
in children with ASD in regards to oral care and to examine if behavioral and
physiological measures of sensory processing difficulties are related to difficulty with
oral care.
3
Study One
Prior research regarding oral care in the ASD population is limited and focused
on difficulty accessing treatment, increased caries prevalence, and behavior difficulties
exhibited during professional oral care (Brickhouse et al., 2009; Loo et al., 2008;
Marshall et al., 2007; 2010; Nelson et al., 2011). Therefore, because of the limited
empirical data regarding this topic, the first study sought to determine if difficulties exist
in this population in regards to oral care in the home and dental office, as well as in
access to oral care.
In order to investigate the differences between children with ASD and their
typically developing (TD) peers in relation to a variety of aspects of dental care, a
survey of parents of children with ASD and TD children was conducted. The survey
examined home and professional oral care variables and additionally included questions
related to access to professional oral care.
Hypothesis 1: Significantly more parents of children with ASD will report
difficulties with oral care in the home, in comparison to parents of TD
children.
Hypothesis 2: Significantly more parents of children with ASD will report
difficulties with professional oral care (oral care at the dentist’s office), in
comparison to parents of TD children.
Hypothesis 3: Significantly fewer parents of children with ASD, as compared to
parents of TD children will report that their child has had two or more routine
dental visits in the past 12 months; significantly more parents of children
with ASD will report difficulties accessing professional oral care, in
comparison to parents of TD children.
Study Two
Research indicates that one factor associated with difficulties with oral care is the
presence of sensory processing difficulties, specifically sensory sensitivities (Stein et al.,
4
2011). Sensory processing has been studied extensively in children with ASD, with
research indicating that some children with ASD are over-responsive to sensory stimuli,
others are under-responsive, and still others are a combination (Baranek et al., 2006;
2007; Ben-Sasson et al., 2009a; Tomchek & Dunn, 2007). Sensory sensitivities have
been cited as potential barriers to dental care (Marshall et al., 2007; 2008); however,
they have been infrequently studied in regards to their direct association to oral care
variables (Stein et al., 2011).
In order to investigate if children with ASD experience increased sensory
sensitivities compared to TD children and if a relationship exists between oral care
difficulties and sensory sensitivities, a survey of parents of TD children and children with
ASD was conducted, and a focus group of parents of children with ASD was also
completed. We examined if children with ASD categorized as “Sensory Over-
responders” experienced more difficulties with oral care in the home and dental office,
per parent report, as compared to children with ASD who responded more typically to
sensory stimuli (“Sensory Not Over-responders”). Qualitative data from the focus group
was examined to support or refute the survey findings.
Hypothesis 1: Significantly more parents of children with ASD will report
moderate to extreme oversensitivity on each of the sensory modalities
(touch, oral, taste, smell, sound, vibration, movement, light), in comparison
to parents of TD children.
Hypothesis 2: Significantly more parents of children with ASD will report
moderate to extreme oversensitivity on three or more (of eight) sensory
modalities, characterizing their child as a Sensory Over-Responder, in
comparison to parents of TD children.
Hypothesis 3: Significantly more parents of children with ASD categorized as
Sensory Over-Responders will report difficulties with oral care in the home,
in comparison to parents of children with ASD categorized as Sensory Not
Over-Responders.
5
Hypothesis 4: Significantly more parents of children with ASD categorized as
Sensory Over-Responders will report difficulties with professional oral care
(oral care at the dentist’s office), in comparison to parents of children with
ASD categorized as Sensory Not Over-Responders.
Study Three
As the results of Study Two suggested that sensory processing difficulties are
associated with difficulties with oral care on behavioral measures, the third study
examined if there is a physiological difference between arousal and sensory
responsivity in children with ASD and TD children during oral care. This was measured
by electrodermal activity (EDA), both at baseline before treatment and during routine
dental cleanings in a regular dental environment. Additionally, it investigated what
variables were related to high and/or low responsivity (e.g., diagnosis, sensory
processing, general anxiety, dental anxiety, uncooperative behavior). The findings help
us to understand if physiological differences in arousal and sensory processing are
related to oral care difficulties during routine dental prophylaxis. Additionally, the
feasibility of utilizing EDA to examine sensory responsivity during oral care was
explored. This study utilized data obtained from subjects participating in a larger-scale
National Institute of Dental and Craniofacial Research funded R34 study, the Sensory
Adapted Dental Environments to Enhance Oral Health in Children with Autism Spectrum
Disorders Study (the SADE study; 1R34DE022263-01).
Hypothesis 1: Children with a diagnosis of ASD will show a greater prevalence of
electrodermal over- and under-arousal at baseline as well as EDA sensory
over-responsivity and under-responsivity during dental cleaning, compared
to EDA patterns shown by typical children.
Hypothesis 2: Children with ASD will exhibit significantly greater general and
dental anxiety as well as significantly greater distress behavior during dental
care, compared to typically developing children in the same EDA sensory
responsivity group (low, mid-range, high).
6
Hypothesis 3: ASD diagnosis, general anxiety, dental anxiety and greater
difficulty tolerating dental care will be correlated with EDA during oral care.
Hypothesis 4: Atypical sensory processing, as measured by parent-report on the
Short Sensory Profile, will be positively correlated with EDA during oral
care.
Guiding Questions for Exploratory Analyses:
1. Do children who are over-responsive to sensory stimuli, based on EDA
measures during baseline, maintain that pattern throughout and following
their routine dental cleaning?
2. Do children who are under-responsive to sensory stimuli, based on EDA
measures during baseline, maintain that pattern throughout and following
their routine dental cleaning?
3. Are children categorized as low-responders based on skin conductance
level placed in the same low-responding group when categorized by NS-
SCR frequency? Children in the mid-responding group? Children in the
high-responding group?
4. Is there a significant difference between baseline EDA to dental cleaning
EDA (“change score”) when comparing TD and ASD groups?
5. Are there any differences in large-amplitude non-specific skin
conductance responses when comparing TD and ASD groups?
6. Do significant differences exist on anxiety and behavior variables when
comparing only the low- and high-responding groups?
Summary
Together, the results of these three studies enhance our knowledge of the
experiences of children with ASD during oral care. The first study contributes general
knowledge of the barriers experienced by children with ASD during oral care in the
home and dental office, as well as in accessing professional dental services. The
second study is one of the first empirical studies to investigate the relationship between
sensory sensitivities and difficulty with oral care in the home and dental office, as
measured by parent reports of child behavior. The third study examined if the reported
7
association between parent-report behavioral indicators of sensory processing
difficulties and difficulty with oral care in the dental office was supported by physiological
data (electrodermal activity, EDA). Ultimately, these studies provide preliminary data
indicating that behavioral findings that support the existence of sensory processing
difficulties during oral care in children with ASD can be validated using physiological
measures (EDA). These findings provide a platform to encourage future research in
regard to the relationship between sensory processing and oral care and support the
development of innovative treatment techniques that will address the sensory
characteristics of the dental experience.
8
CHAPTER TWO: LITERATURE REVIEW
The Importance of Oral Care
It is well-established that oral care is an important component of pediatric health
care. Poor oral health and the diseases that may result from it can lead to difficulties
with eating, speech impediments, pain, sleep disturbances, missed days of work or
school, and decreased self-esteem, causing a dramatic effect on one’s health and
quality of life (Casamassimo, 1996; HHS, 2000; Owens et al., 2006).
Good Oral Practice
Oral care at home. According to Casamassimo (1996; Casamassimo & Holt,
2004), good oral care practice begins with cleaning an infant’s teeth twice a day with a
soft brush as soon as a tooth erupts, usually around six months. This brushing should
continue, utilizing water in lieu of toothpaste (unless recommended by a dentist for a
child at increased risk for tooth decay), until 2 years of age. At this time, it is
recommended that parents should begin brushing their child’s teeth twice a day with a
small amount of fluoridated toothpaste. Proper oral care will require that a parent
brushes the child’s teeth until proper fine motor skills are acquired, typically by seven or
eight years of age. Lastly, at eight years of age, children should be taught how to floss
appropriately, leading to a child having all the necessary skills to independently and
correctly practice good oral care in the home.
Oral care at the dentist’s office. The first dentist appointment should occur at
no later than 12 months of age, with the dentist informing parents of an appropriate
schedule for his or her child’s appointments, based on the child’s needs, risk factors,
9
and susceptibility to disease. For children with special health care needs, more frequent
dental visits may be recommended (AAPD, 2011-12c; Casamassimo & Holt, 2004).
Dental visits. A routine dental visit includes an oral examination and prophylaxis.
Often delivered at the same time is an application of fluoride as well as education of the
parent and child. Dental visits provide an opportunity for the early diagnosis, prevention,
and treatment of oral diseases and conditions, simultaneously allowing for assessment
of self-care practices. Dental visits should continue every six months, or as needed,
based on a child’s needs and susceptibility to disease (AAPD, 2011-12c; AAPD, 2011-
12d; Casamassimo, 1996; Casamassimo & Holt, 2004).
Oral examination. A comprehensive oral examination includes assessment of:
general health and growth, pain, oral hygiene, periodontal health, caries risk, and
behavior of the child, etc. The dentist takes note of caries (tooth decay), developmental
dental anomalies, malocclusion, pathologic conditions, dental injuries, and risk factors a
child may have (AAPD, 2011-12c; Casamassimo, 1996; Casamassimo & Holt, 2004).
Dental prophylaxis. Dental prophylaxis typically consists of applying an abrasive
paste to the teeth, using a mechanical rotating rubber cup (Azarpazhooh & Main, 2009);
hand scaling may also occur (ADA, 2012). Professional prophylaxis is completed in
order to remove plaque and calculus, polish surfaces, and remove stains, etc. in order
to reduce and prevent future dental caries (AAPD, 2011-12d; Azarpazhooh & Main,
2009).
Dental Caries
Dental caries, also known as tooth decay or cavities, is the most devastating and
common chronic disease of childhood and, if left untreated, can affect the child’s oral
10
quality of life (Casamassimo, 1996; Edelstein & Chinn, 2009; Edelstein & Douglass,
1995; HHS, 2000; Humphris et al., 2005; Low et al., 1999; OHRC, 2004a; Thomas &
Primosch, 2002). Dental caries result from the interaction between bacteria and sugar,
causing acid production which demineralizes tooth structure (AAPD, 2011-12e; OHRC,
2004a). It is considered to be a transmissible infectious disease, as it can be spread
through salivary contact (AAPD, 2011-12e). However, caries is a largely preventable
and sometimes reversible disease if proper measures are taken (e.g., good oral care in
the home, routine dental cleanings at the office; Casamassimo et al., 2009a; Kagihara
et al., 2009; Kawashita et al., 2011).
When a child under six years of age has one or more decayed, missing or filled
tooth, it is known as early childhood caries (ECC) and is often characterized by rapid
destruction, infrequent dental visits (none within the past 12 months), high frequency
sugar exposure, and poverty (AAPD, 2011-12f; Dye et al., 2004; HHS, 2000; OHRC,
2004a; Tinanoff, 2005). Children diagnosed with ECC are highly predisposed to
increased incidence of future caries development in the primary and permanent teeth
(AAPD, 2011-12e; Alm et al., 2011; Almeida et al., 2000).
Approximately 50% of children older than six years of age and adolescents in the
United States have had at least one cavity in their primary or permanent teeth
(Edelstein & Chinn, 2009; HHS, 2010). According to analyses of the National Health
and Nutrition Examination Surveys (1988-1994 and 1999-2004), prevalence of dental
caries in the primary teeth of children have increased. Parents report that their children
have had a dental caries experience, defined as “the sum of filled and unfilled cavities,
along with any missing teeth resulting from decay” (HHS, 2000, p. 21-39) in 24% vs.
11
28% of children aged 2-5 years old, in 50% vs. 51% of children aged 6-11 years old, in
1988-1994 and 1999-2004, respectively (Edelstein & Chinn, 2009). This increase in
caries prevalence in children is also supported by the baseline data published in
Healthy People 2010 and 2020 (HHS, 2000; 2010). However, prevalence of caries in
the permanent teeth of adolescents has been reported to have decreased from 1988-
1994 to 1999-2004 (HHS, 2000; 2010).
Caries experience is cumulative, explaining the higher frequency among
adolescents and, if not treated, dental caries are irreversible (HHS, 2000; 2010).
Although cases of dental caries have declined among adolescents, dental disease
continues to run rampant in children, reported to be five times more common than
asthma and 20 times more common than diabetes, with the possible repercussions
staggering (Casamassimo et al., 2009a; Edelstein & Chinn, 2009; HHS, 2000; 2010).
Consequences of Inadequate Oral Care
Inadequate oral care is the cause of a number of issues and diseases in the
present as well as the future. Pain and infection from dental disease can cause
difficulties with eating and sleeping, result in impaired speech development, lead a child
to exhibit negative behaviors, and reduced self-esteem (Casamassimo, 1996; HHS,
2000; HHS, 2010; Low et al., 1999; OHRC, 2003; OHRC, 2004a; Owens et al., 2006;
Thomas & Primosch, 2002). Children with dental pain have more school absences, with
an estimated 51 million school hours per year lost because dental-related illness or pain
(Casamassimo, 1996; HHS, 2000; OHRC, 2003). When in attendance, children may be
unable to focus and be easily distracted, possibly leading to a decline in school
performance (OHRC, 2003). Lastly, research indicates that periodontal disease
12
negatively impacts glycemic control in people with diabetes mellitus (Al-Maskari et al.,
2011; Preshaw et al., 2012), has been associated with pneumonia (El-Solh, 2011;
Sharma & Shamsuddin, 2011) and chronic kidney disease (Ioannidou & Swede, 2011;
Iwasaki et al., 2011), and it is a possible risk factor for edentulism, cardiovascular
disease, and respiratory disease (Aida et al., 2011; Beck et al., 1996; Eklund & Burt,
1994; Miller et al., 1992; Starr & Hall, 2010; Xu & Lu, 2011).
Oral Health in Vulnerable Populations
Despite the importance of oral care, disparities exist in the access to and practice
of oral care in the United States. Research indicates that these disparities exist among
certain vulnerable populations which may be at risk for poor oral health, including, but
not limited to children from low income families, Hispanic children, and children with
special health care needs (CSHCNs).
Low Income
Children living in poverty face many barriers to adequate oral care which can
negatively impact their oral health. For instance, in a study analyzing data from the
1993-1996 National Health Interview Surveys, poor and near-poor children had a
significantly higher risk of having an unmet health need in comparison with children in
middle and upper income families, with dental care reported as the most prevalent
untreated need (Newacheck et al., 2000a). Per report on the 2007 National Survey of
Children’s Health, significantly more parents of children from low income families, as
compared to high income families, reported that their child’s teeth are in fair/poor
condition, the child had no preventive dental care visit in the last 12 months, and that
the child had experienced decayed teeth or cavities in the past six months (CAHMI,
13
2011b). In addition to the higher caries experience reported on the National Survey of
Children’s Health, Mulligan and Seirawan (2009) found that 73% of underprivileged
children in Los Angeles County had untreated caries or white spot lesions, which is
substantially greater than the national average of untreated tooth decay reported in the
National Health and Nutrition Examination Survey (Beltran-Aguilar et al., 2005). Lastly,
research indicates that there is a strong association between reports of better dental
health and increasing income (HHS, 2020; Kenney et al., 2008).
Hispanic
Children from ethnic minority populations may also experience obstacles to
maintaining proper oral health; in California, one such population is children who are
Hispanic. Based on parental report on the National Survey of Children’s Health,
significantly more Hispanic children, as compared to white, non-Hispanic children, had
not visited the dentist for preventive care in the past 12 months (CAHMI, 2011b).
Hispanic preschool children were approximately 2.5 times more likely to have early
childhood caries than white, non-Hispanic, children, with 39-49% of children in the
Hispanic sample having untreated caries (Shiboski et al., 2003). Even after controlling
for socioeconomic status, Hispanic parents are still more than twice as likely to report
their child’s oral health as fair or poor, as compared to parents of non-Hispanic white
children (Dietrich et al., 2008). Additionally, regardless of type of dental insurance,
Hispanic children are more likely to have a longer time period between dental visits, in
comparison to white children, which may have negative implications for their oral health
(Pourat & FInocchio, 2010).
14
Special Health Care Needs
Dental care was and continues to be the most frequently cited unmet health care
need for children with special health care needs (CAHMI, 2011a; Davis, 2009, Lewis et
al., 2005; Lewis, 2009; Newacheck et al., 2000a; 2000b). This population is reported to
be almost twice as likely to have unmet oral health care needs than their peers without
special health care needs; additionally, they have an increased risk and prevalence for
dental disease (CAHMI, 2011a; Charles et al., 2010; DeMattei et al., 2007; Glassman &
Miller, 2009; Glassman et al., 1994; Gordon et al., 1998; Hulland & Sigal, 2000; Lewis,
2009; Seirawan et al., 2008; Silver & Stein, 2001; Stiefel, 2002; Tesini & Fenton, 1994;
Van Cleave & Davis, 2008). Inadequate oral care and increased risk may lead to oral
disease as well as impact one’s ability to participate in daily activities.
Children with special health care needs often have numerous other health-
related concerns. Therefore, despite the reported increased prevalence of caries, oral
health problems, and fair or poor condition of teeth in this population (CAHMI, 2011a),
oral care may not always be regarded as a priority (Casamassimo, 1996; Friedlander,
2005; Nelson et al., 2011; Stiefel, 2002; Williams, 2009). This is demonstrated in the
striking statistics suggesting that approximately 42-49% of people with disabilities did
not visit the dentist within the past year (HHS, 2000; Stein et al., 2011). Children with
special health care needs should receive preventive dental care as early as possible,
with some requiring more frequent care than the semiannual visits suggested for typical
children (AAPD, 2011-12c; AAPD, 2011-12d; Casamassimo, 1996; Casamassimo &
Holt, 2004).
15
ORAL CARE IN CHILDREN WITH SPECIAL HEALTH CARE NEEDS:
FOCUS ON AUTISM SPECTRUM DISORDERS
Children with autism spectrum disorders (ASD), a condition characterized by
impaired social interaction, abnormalities in communication, restricted interests, and
repetitive and obsessive behaviors (APA, 2000), represent one such population of
CSHCNs at high risk for poor oral health. The prevalence of ASD is significantly higher
today than in the past, estimated in 2011 to be approximately 1 in 110 children in the
U.S. (CDC, 2011). There are a variety of risk factors that indicate that children with
disabilities, such as ASD, have an increased risk of developing caries and periodontal
disease. The majority of research indicates that children with ASD exhibit high incidence
of poor oral health, as measured by caries prevalence and severity (CAHMI, 2011a;
DeMattei et al., 2007; Jaber, 2011; Klein & Nowak, 1999; Kopycka-Kedzierawski &
Auinger, 2008; Marshall et al., 2010), despite a small number of contradictory studies
(Fahlvik-Planefeldt et al., 2001; Loo et al., 2008; Morinushi et al., 2001). Although
autism is not a direct cause of dental deficit, it is considered to be an indicator of high
caries risk, with caries incidence linked to behaviors and life factors that are prevalent to
the disorder (Marshall et al., 2010; Murshid et al., 2011). These include: inadequate oral
care, co-occurrence of other disorders and related medications, poor dietary habits,
damaging oral habits, difficulty accessing professional services, personal characteristics
that act as barriers and environmental characteristics that act as barriers.
16
Risk Factors
Inadequate Oral Care
Preventive measures, such as good oral care in the home and professional
cleanings, are important in order to avoid development of caries and dental disease.
However, in children with ASD, 13-18% of parents responding to the 2003 National
Survey of Children’s Health reported that their child with ASD had fair or poor oral
hygiene and that his/her teeth were in fair or poor condition, significantly more than
parents of children without autism (Kenney et al., 2008; Kopycka-Kedzierawski &
Auinger, 2008). Parental report of poor oral hygiene status is supported by Marshall et
al.’s (2010) study, in which dentists found poor oral hygiene in 17% of children with ASD
who participated in their study. Additionally, reports indicate that 28-44% of children with
ASD have not visited the dentist for routine dental care the recommended two times
within the last year (AAPD, 2011-12c; Brickhouse et al., 2009; Kopycka-Kedzierawski &
Auinger, 2008; Stein et al., 2011).
Studies suggest that approximately half of children with ASD brush or have their
teeth brushed one or fewer times per day (Marshall et al., 2010). Although 70-88% of
these children require some assistance with toothbrushing regardless of age, deficits in
motor coordination may impact the ability to manipulate the toothbrush, making proper
oral care in the home difficult (Casamassimo & Holt, 2004; Jaber, 2011; Klein & Nowak,
1999; Marshall et al., 2007; Marshall et al., 2010). Refusal to allow a parent or caregiver
to brush the child’s teeth is also common, with 48-73% of parents of children with ASD
reporting that daily oral care (toothbrushing) is difficult (Charles, 2010; Marshall et al.,
2010; Stein et al., 2011).
17
When oral hygiene is poor, there is an increased risk for the development of
caries (Casamassimo, 1996; NIDCR, 2010). In children with autism, poor oral hygiene,
frequency of toothbrushing, requirement of assistance with toothbrushing, and difficulty
level of toothbrushing were found to be significantly associated with new caries activity,
defined as the percentage of primary and permanent teeth with untreated decay
(Marshall et al., 2010).
Co-occurrence of Other Disorders
Comorbidity of other disorders may place children with special health care needs
at greater risk for oral disease or damage (AAPD, 2011b; Gordon et al., 1998;
McKinney et al., 1991) and may also impact a child’s ability to cooperate with and
tolerate dental treatment (Loo et al., 2009; Marshall et al., 2007). Seizure disorder is
commonly found in children with ASD, with approximately 20-33% of these individuals
experiencing epilepsy by adulthood, increasing their risk for intraoral trauma (Bolton et
al., 2011; Friedlander et al., 2003; Friedlander et al., 2006; Isman & Newman, 1997;
NIDCR, 2004; NIDCR, 2010; Rapin & Katzman, 1998; Tsai, 1996; Tuchman & Cuccaro,
2011). There is also a high frequency of chronic gastrointestinal problems reported in
children with autism, with reflux esophagitis and food regurgitation frequently occurring,
thereby increasing risk for early childhood dental caries as well as erosion of teeth
(Casamassimo, 1996; Casamassimo & Holt, 2004; Horvath et al., 1999; Horvath &
Perman, 2002a; Horvath et al., 2002b; Isman & Newman, 1997; NIDCR, 2010; Taji &
Seow, 2010).
Medications can also lead to significant oral health complications. For example,
Dilantin, a commonly used anticonvulsant, can lead to both periodontal disease as well
18
as gingival overgrowth, which often results in chewing impairment and delayed eruption
of permanent teeth (McKinney et al., 1991; Stiefel, 2002; Tesini & Fenton, 1994). Many
medications taken by children with disabilities have high sugar content and/or cause
xerostomia (reduced salivary flow), causing them to be cariogenic if adequate
preventive oral care is not undertaken (AAPD, 2011-12b; Casamassimo, 1996;
Casamassimo & Holt, 2004; Fontana & Zero, 2006; Marshall et al., 2010; NIDCR, 2004;
NIDCR, 2010; Tesini & Fenton, 1994).
Dietary Habits
There are a number of dietary habits that children with ASD may engage in which
are risk factors for poor oral health and the development of caries; they include
prolonged use of a bottle, limited diets, and use of food by adults and/or caregivers as a
reward.
Prolonged use of baby bottle. Children with special needs often continue to
use and/or sleep with a bottle containing a sugar-containing liquid (e.g., milk or juice)
longer than typically developing children (Geraghty et al., 2010b; McKinney et al.,
1991). Since children should not be given anything to eat or drink (except water) after
the completion of toothbrushing at night, this prolonged use puts this population at risk
for severe tooth decay resulting from early childhood caries (ECC, previously named
baby bottle tooth decay; Casamassimo, 1996; Casamassimo & Holt, 2004; Isman &
Newman, 1997; McKinney et al., 1991; NIDCR, 2010).
Limited diet. Children with ASD have been found to exhibit more food refusal
behaviors and have a more limited food repertoire than typically developing children
(Bandini et al., 2010; Charles, 2010); these limited diets may be due to a variety of
19
reasons, including allergies and/or sensitivities to certain food tastes, textures or smells,
both of which may lead to a limited food repertoire in children with ASD.
Allergies. In a study analyzing health conditions among children with autism,
Gurney et al. (2006) found that 14.1% of children with autism had a food or digestive
allergy, as compared to 3.2% of children without. These allergies can produce a
resultant change in dietary habits, possibly increasing risk of poor oral health due to
dietary restrictions.
Sensitivities to food taste, texture or smell. In addition to possible allergies, many
children with autism are often hyper-sensitive to taste, texture, or smells, leading to
avoidance and restriction of foods, resulting in severely limited diets (Cermak et al.,
2010; Geraghty et al., 2010a; Rapin & Katzman, 1998). In a study by Tomchek and
Dunn (2007), parent report indicated that approximately 53% of children with ASD
would only eat certain tastes and 56% were picky eaters regarding textures, as opposed
to approximately 7% and 10% in their typically developing counterparts, respectively.
Parents of children with ASD also reported that their child avoided certain tastes or food
smells that are typically part of children’s diets more frequently than parents of typically
developing children (46% vs. 18%, respectively; Tomchek & Dunn, 2007). These
modified dietary habits in children with special health care needs may lead to oral health
problems.
Limited food repertoire. Whether due to allergies, sensitivities to the sensory
characteristics of food, or other reasons, children with ASD have been found to often
self-restrict their diet by refusing food and eating only a limited number of types of foods
(Bandini et al., 2010; Marshall et al., 2010). When examining their restricted diets, it is
20
noted that they are often carbohydrate- and sugar-rich, both of which are major risk
factors for dental caries prevalence and progression (Casamassimo, 1996;
Casamassimo & Holt, 2004; Cermak et al., 2010; Geraghty et al., 2010a; NIDCR, 2004;
Tinanoff & Palmer, 2000; Tinanoff, 2005). Of these children, research indicates that 24-
41% of children with autism prefer soft and sweet food (Klein & Nowak, 1999; Marshall
et al., 2010). Both a limited food repertoire and a preference for soft and sweet food
may increase caries risk (NIDCR, 2004). In a study by Marshall et al. (2010), of the
children with ASD with a self-restricting diet, 34% had new caries activity and 55% had
a history of caries activity; similarly, of those who preferred sweet or soft food, 22% had
new caries activity and 61% had a history of caries.
Use of food as reward. Dental literature indicates that part of good nutrition and
oral health includes consuming foods high in sugar in limited quantity and only at
mealtimes, with the consumption of more than 3 “between meal sugar-containing
snacks or beverages per day” placing infants, children and adolescents at high risk for
the development of caries (AAPD, 2011-12b, p. 111-112; Casamassimo & Holt, 2004).
However, research indicates that over half of children with ASD are given sweet treats
as rewards in behavior modification techniques; of these children, 41% had new caries
activity and 60% had a history of caries (Marshall et al., 2010). This frequent
consumption of sugar-containing items may be used to the detriment of these children’s
oral health, especially as consumption of foods that easily adhere to the tooth surface
(e.g., fruit roll-ups, candy, gummy bears) increase the risk for tooth decay
(Casamassimo, 1996; Casamassimo & Holt, 2004; McKinney et al., 1991; NIDCR,
21
2010). All in all, it has been found that poor eating practices are associated with caries
occurrence in primary teeth (Dye et al., 2004).
Damaging Oral Habits
Damaging oral habits are common among children with autism. These include:
bruxism, self-stimulating and self-injurious behaviors, and pica (Green & Flanagan,
2008; Jaber, 2011; Kenney et al., 2008; Kopycka-Kedzierawski & Auinger, 2008; Nelson
et al., 2011; NIDCR, 2004; Rapin & Katzman, 1998; Tesini & Fenton, 1994). Bruxism is
the clenching and grinding of the teeth, causing mechanical stress on the teeth and
eventual eroding and diminishing of the height of teeth; bruxism can also cause teeth to
become loose (McKinney et al., 1991; Tesini & Fenton, 1994). Self-stimulatory and self-
injurious behaviors include head-banging, self-biting, picking at the gingival and pica
(eating objects and substances such as gravel and pens), all of which can cause
damage to the teeth (NIDCR, 2004; Tesini & Fenton, 1994).
Difficulty Accessing Professional Services
According to the amended American with Disabilities Act (ADA) of 1990, every
person, regardless of disability status, has the right to equal access to dental care as
well as all other aspects of life (U.S. Department of Justice, 1991). This law prohibits
discrimination on the basis of disability by public entities. Additionally, the ADA Act (P.L.
101-336) requires that dentists treat patients with disabilities on the same basis as they
treat patients without disabilities, serving and making reasonable modifications for
people with disabilities in order to facilitate access to dental offices. According to Nelson
et al. (2011), accommodations have been reported to be required for approximately a
quarter of CSHCNs in order to receive dental treatment, although 21% have also
22
required intense behavioral interventions such as restraint or sedation. Flexibility and
creativity are essential in the dental office, as simultaneous use of multiple
accommodations may benefit CSHCNs, especially those with ASD (Charles, 2010; Weil
et al., 2011). In fact, one study surveying Special Care Dentistry Association Members
found that respondents utilized an average of 6.34 accommodations to address
difficulties with communication, routine, and social interactions when providing dental
care for children with ASD (Weil et al., 2011).
However, this is not always the case. Although people with special health care
needs have significant dental disease, lack of access to and availability of dental
services by people with disabilities is alarmingly widespread, as dental care was and
continues to be the greatest unmet health care need of CSHCNs (CAHMI, 2011a;
Davis, 2009, Glassman & Miller, 2003; Lewis et al., 2005; Lewis, 2009; Newacheck et
al., 2000a; 2000b; Owens et al., 2006). This is also true of the ASD population as
research indicates that 13-23% of children with ASD have an unmet dental care need
(Brickhouse et al., 2009; Lewis, 2009; Nelson et al., 2011).
This disparity is impacted by a variety of factors including: lack of sufficient
numbers of professionals trained to work with individuals with special needs, lack of
willingness of dental professionals to work with this population, and financial and legal
issues (Cumella et al., 2000; Gordon et al., 1998; Siegal, 1985; Stiefel, 2002).
Lack of professionals trained to work with CSHCNs. According to the
American Academy of Pediatric Dentistry, “pediatric dentistry is an age-related specialty
that provides both primary and comprehensive preventive and therapeutic oral health
needs for infants and children through adolescence, including those with special health
23
care needs” (AAPD, 2008-09, p. 81). Pediatric dentists deal with the simple and
complex issues of pediatric oral health of both children with and without special health
care needs; however, this specialty of dentistry has become the primary provider of
professional oral health care for CSHCNs (Casamassimo et al., 2009a; Ciesla et al.,
2011). Unfortunately, there is a great burden on pediatric dentists, as it is estimated that
there are only approximately 5,000 pediatric dentists practicing in the United States,
while there are over 10 million CSHCNs nationally (Kerins et al., 2011). Keeping in mind
that CSHCNs may require dental services more than the typical two times per year
based on risk for caries (AAPD, 2011-12c), research indicates that if pediatric dentists
allocated 10% of their total appointments for CSHCNs, only 31% of CSHCNs would
receive one dental appointment per year (Kerins et al., 2011).
An immediate source of relief to the over-burdened system of pediatric dentistry
would be to increase the number of trained pediatric dentists. Additionally, an increase
in frequency of treatment of CSHCNs by general dentists would help reduce the
shortage of available dentists. However, studies indicate that only approximately 10% of
general dentists treat CSHCNs often or very often in their practices (Casamassimo et
al., 2004) and that almost 50% of general dentists don’t treat any pediatric patients with
special needs in an average week (Dao et al., 2005). In regards to ASD, studies find
that approximately 67% of general dentists would not treat adults with ASD and 60-68%
would not treat children with ASD (Dao et al., 2005; Weil & Inglehart, 2010).
Lack of willingness and training to work with CSHCNs. Despite the fact that
the Commission on Dental Accreditation’s Standards for Programs in General Dentistry
require general dentists to be able to access, diagnose, plan and provide oral health
24
care for patients with special health care needs, finding dental health professionals
willing and trained to treat people with disabilities is a major dilemma for CSHCNs as
dentists often exhibit reluctance to care for populations with disabilities (Burtner & Dicks,
1994; Casamassimo et al., 2004; CODA, 2007; DeMattei et al., 2007; Edelstein, 2007;
Fenton et al., 2003; Siegal, 1985; Stiefel, 2002; Wilson, 1992). Parents also report that
dental staff are anxious or nervous to treat their child with a disability, creating awkward
interactions and an additional barrier to care (Brickhouse et al., 2009; Nelson et al.,
2011). In a study examining oral care in children with ASD, 52% of parents reported that
locating a dentist capable and willing to provide care was difficult and that 25% of
children with ASD had ever been refused treatment at some time (Brickhouse et al.,
2009).
The reluctance dental professionals’ exhibit in treating people with disabilities has
been partially attributed to a lack of personal competence in treating this population, due
to inadequate knowledge and training (Casamassimo et al., 2004; Crall, 2007;
Edelstein, 2007; Fenton, 1993; Fenton et al., 2003; Glassman et al., 2005; Lyons, 2009;
Siegal, 1985). Only one in four general practitioners report having hands-on educational
experiences with CSHCNs, so it is not surprising that dentists question their confidence
and ability in caring for this population (Casamassimo et al., 2004). In a study of dental
school curricula in the United States and Canada, 47% of participating schools devoted
8 lecture hours or less and 10 clinical hours or less to working with people with
disabilities, averaging to fewer than five treatment appointments total (Fenton, 1993).
Similarly, Romer et al. (1999) found that more than half participating dental schools
allotted less than five hours of classroom instruction and less than 5% of clinical hours
25
to working with people with special health care needs. More recently, respondents of a
survey designed to obtain the perception of US dental educators and students regarding
persons with SHCNs found that dental schools continue to provide limited didactic and
clinical training for patients with SHCNs (Holder et al., 2009). Additionally, although 50%
of deans of dental schools reported that teaching about patients with SHCNs was not a
priority at their school, 47% reported that their graduates were competent to treat this
population. However, this was not reflected in student perceptions, of which 75%
reported feeling inadequately prepared to provide needed services to patients with
disabilities (Holder et al., 2009).
When asked if additional training pertinent to working with CSHCNs would be
desirable, dental professional participants frequently state yes (Casamassimo et al.,
2004). Interestingly, practitioners who had already received educational experiences
with a special health care needs population also reported that they desired additional
training in treating this population (Casamassimo et al., 2004). This indicates that dental
students and professionals must have multiple opportunities to treat people with
disabilities in order to acquire confidence and competence in working with this
population (Fenton, 1993).
Lack of adequate training may also impact quality and appropriateness of dental
services provided to people with disabilities. In lieu of treatment and fillings in individuals
with dental caries, research suggests that people with disabilities have a higher
proportion of missing teeth. This may be due to a different standard of care or may
reflect the many other factors (e.g., uncooperative behavior) that must be taken into
account when treating this population. Regardless, there is a discrepancy in the dental
26
treatment of people with disabilities, with an increased likelihood for dental professionals
to utilize extractions rather than fillings in response to caries in the special needs
population while few of their typical counterparts have teeth extracted (Cumella et al.,
2000; Haavio, 1995; HHS, 2000; Luppanapornlarp et al., 2010; Vazquez et al., 2002).
A practical solution to this dilemma is to adequately train dental professionals to
provide this care, thereby increasing the number of dentists available and willing to
serve this population (Casamassimo et al., 2004; Fenton, 1993; Wilson, 1992). In a
study analyzing data regarding dentists’ relationship to CSHCNs, Casamassimo et al.
(2004) found that hands-on educational experiences with CSHCNs needs significantly
impacts dentists’ perceptions of possible barriers of treatment, resulting in dentists’
increased willingness to treat this population. In response to this need, the American
Dental Association recently revised the dental educational standards regarding children
with special health care needs to assure that dental and dental hygiene programs
include both didactic and clinical opportunities to better prepare dental professionals to
care for people with special health care needs, to be implemented by 2006 (CODA,
2010; Waldman et al., 2005). This may serve to increase future dentists’ acceptability of
working with CSHCNs, improving appropriateness of care, professional attitudes as well
as willingness to treat this population (Casamassimo et al., 2004; Wilson, 1992).
Financial and legal issues. The problem of access is often compounded by
cost of services, lack of financial reimbursement for dental services, and legal concerns.
Studies find that when asked why their CSHCNs have not received needed or
preventive dental care, 21-42% of parents state that dental care is too costly (Crall,
2004; Lewis, 2009; Lewis et al., 2005; Nelson et al., 2011). Additionally, dental
27
professionals often require extra time and expertise to treat clients with disabilities, such
as in the implementation of behavioral guidance techniques (Crall, 2004; Fenton et al.,
2003; Glassman et al., 2005; Lyons, 2009). However, payments are generally provided
only for procedures that relate directly to the teeth or related oral structures, and
therefore do not include the behavior-shaping component of care (Crall, 2004). In a
study surveying members of the Special Care Dentistry Association, 72% of dentist
respondents agreed that the financial compensation for treating patients with ASD is
inadequate (Weil et al., 2011).
The inadequate remuneration for time spent with CSHCNs often leads some
health care providers to be less willing to treat this population (Brickhouse et al., 2009;
DeMattei et al., 2007; Glassman et al., 2005). Additionally, people with disabilities are
often eligible for and utilize Medicaid, but as federally funded programs shrink and
states continue to reduce reimbursement levels, this population often finds themselves
denied access to necessary dental care (Al Agili et al., 2004; Crall, 2004; DeMattei et
al., 2007; Edelstein, 2007; Fenton et al., 2003; Glassman et al., 1996; Stiefel et al.,
2002; Waldman & Perlman, 2001).
Legal issues may also be a barrier when obtaining treatment for CSHCNs.
Possible legal issues concern both the idea of informed consent as well as the use of
physical restraint. Obtaining informed consent for dental procedures is extremely
important, especially when the use of physical restraint is being considered. When
patients demonstrate maladaptive and disruptive behaviors, physical restraints or
pharmacological methods can be required in order to provide dental treatment in a safe
manner. However, physical restraints are used reluctantly as they pose a possible legal
28
concern to the dental professionals utilizing them (Burtner & Dicks, 1994; Lyons, 2009;
Manley, 2004; Morris, 2004).
Personal Characteristics that Act as Barriers for Children with ASD
(Non-Environmental Barriers)
When attempting to maintain good oral care, children with autism face many
obstacles and barriers. These can be due to characteristics of the child as well as the
dental environment. Personal characteristics of the child include communication
challenges, need for rigidity and routine, dental fear and anxiety, behavioral challenges,
and sensory processing difficulties. Characteristics of the dental environment that may
act as barriers to dental care include the different types of sensory stimuli which may be
present in the dental office.
Communication
Impairments in communication, one of the primary characteristics of autism,
poses a significant challenge in providing oral care, as reported both by dental
professionals and parents alike (Brickhouse et al., 2009; Crespi & Ferguson, 1987;
Klein & Nowak, 1998; Marshall et al., 2007; 2008; NIDCR, 2004; Weil et al., 2011). This
barrier is two-fold: the dentist’s ability to speak to and have the child understand may be
limited, and the child’s ability to communicate wants, fears, needs and pain to the
dentist is likewise impaired. The ability to communicate with a patient is important to
enable successful treatment; however, this may not be possible for many children with
ASD (Marshall et al., 2008; NIDCR, 2004; Tesini & Fenton, 1994). Some children may
require accommodations to traditional treatment which modify typical communication
styles, such as using visual aids or speaking in short, concise phrases that are repeated
29
often, as many children with ASD demonstrate a difficulty understanding spoken
language (Brickhouse et al., 2009; Burkhart, 1984; Friedlander et al., 2003; Tesini &
Fenton, 1994).
In addition to potential impairment in understanding, the child’s communicative
abilities also pose a significant barrier to dental treatment. Among children with autism
who do speak, echolalia may be present and language can be rote, repetitive and lack
communicative meaning, often accompanied by an inability to answer questions
(Friedlander et al., 2003; Rogers, 2010). The ability to verbally describe pain can be
challenging for typically developing children, so the challenge of explaining and telling
the dentist of pain is even more difficult for children with autism (Low et al., 1999).
These children are often unable to verbalize their dental pain, discomfort or anxiety
(Versloot et al., 2008).
Need for Rigidity and Routine
In people with autism, one of the defining behavioral characteristics is a need for
sameness, demonstrated by intolerance in deviation from routine and resistance to
change (NIDCR, 2004; Rogers, 2010). Intense, inflexible rituals, obsessive routines and
fear of novelty become evident in the child’s desire to follow the same daily schedule
(Friedlander et al., 2003; Rogers, 2010). This rigidity and inflexibility, coupled with a fear
of change and a strong preference for maintaining routines can make a trip to the
dentist’s office a challenging experience (Hulland & Sigal, 2000; Marshall et al., 2007;
2008; Weil et al., 2011). When routines are changed, behavioral problems such as
“temper tantrums” often occur over even minimal changes in the environment (Burkart,
1984; Klein & Nowak, 1999; Rogers, 2010). Due to these difficulties, dental literature
30
suggests accommodations such as having the same staff, appointment time, and exam
room for children with ASD in order to increase familiarity and consistency (Charles,
2010; NIDCR, 2004; Williams, 2009). The majority of parents report that strategies such
as using the same dentist, using the same dental operatory, and, to a lesser extent,
scheduling appointments at the same time of day help their child with ASD cope during
dental treatment (Marshall et al., 2008). Unfortunately, these accommodations may not
always be possible. Additionally, other studies suggest that even with repeated visits
accommodations to enhance familiarity with the office and staff may not produce
increased cooperation for children with ASD (Marshall et al., 2007).
Dental Fear and Anxiety
Dental fear and anxiety refers to strong negative feelings associated with dental
treatment (Klingberg & Broberg, 2007), and is a significant barrier to dental care
(Armfield, 2010a; Buchanan, 2010a; Doerr et al., 1998; Gustaffson et al., 2010a;
Rafique et al., 2008; Splieth et al., 2009). It is often acquired in early years and is
frequently associated with a history of painful or unpleasant dental experiences
(Berggren & Meynert, 1984; Locker et al., 1999; Milgrom et al., 1988; Woolgrove &
Cumberbatch, 1986). In fact, in studies by Berggren and Meynert (1984) and Moore et
al. (1993), it was found that dental fear had begun in childhood in 85% and 83.7%,
respectively, of participants and that the prevailing causative factor was traumatic dental
experiences. These negative experiences generate expectations that future dental
treatments will also be painful, setting up a cycle of increasing anxiety, fear and dental
avoidance (Woolgrove & Cumberbatch, 1986).
31
Dental fear and anxiety is believed to cause avoidance of treatment, irregular
attendance for professional cleanings, and negative behaviors during care (Chadwick,
2002; Doerr et al., 1998; Gustaffson et al., 2010a; Pavi et al., 1995; Rafique et al., 2008;
Schuller et al., 2003; Woolgrove & Cumberbatch, 1986). Additionally, dentists report
that the treatment of anxious children is difficult (Diercke et al., 2012). Dental fear and
anxiety may result in avoidance of treatment which may lead to severe consequences to
oral health, such as more decayed tooth surfaces and worse appearance of teeth,
measured both clinically and by self-report (Berggren & Meynert, 1984; Doerr et al.,
1998; HHS, 2000; Milgrom et al., 1988; Schuller et al., 2003).
Typical population. Dental fear and anxiety is a common phenomenon, with an
estimated prevalence of 6-37% in typically developing children and adolescents (Bedi et
al., 1992; Caprioglio et al., 2009; Gustafsson et al., 2010b; Klingberg & Broberg, 2007;
Klingberg, 2008; Nicolas et al., 2010; Ten Berge et al., 2002(cfss-ds3). Dental fear and
anxiety in children and adolescents may be associated with gender (Bedi et al., 1992;
Buchanan, 2010; Gustafsson et al., 2010b; Klingberg & Broberg, 2007; Settineri et al.,
2005; Tickle et al., 2009), age (Buchanan, 2010; Klingberg & Broberg, 2007; Tickle et
al., 2009), negative behaviors exhibited in the dental office (Gustafsson et al., 2010a),
parental dental anxiety (Nuttall et al., 2008; Themessl-Huber et al., 2010b; Tickle et al.,
2009), and a high level of general fear or anxiety (Bedi et al., 1992).
Special needs population. People with special needs frequently have more
experiences with different medical procedures prior to their first dental visit, possibly
influencing their level of fear and anxiety regarding oral care (Lyons, 2009). Often, they
demonstrate a greater level of fear and anxiety in seeking dental treatment than the
32
general population. In a study analyzing perceived barriers to oral care among a special
needs population, 55% of participants reported some degree of anxiety about dental
visits (Gordon et al., 1998). Some level of fear or anxiety has been reported in 43-55%
of people with special health care needs, with 23-28% reported to have experienced
moderate to high levels of fear and anxiety (Gordon et al., 1998; Martin et al., 2002).
Similar to the general public, studies have found that elevated dental fear and anxiety
inversely impact frequency of dental visits (Gordon et al., 1998; Stiefel, 2002).
Perception of patient anxiety by dental professionals. Patients with anxiety
present in various ways, often complicating care and presenting challenges for the
dental team (Lyons, 2009). A majority of dentists report experiencing anxiety and stress
when treating extremely anxious patients (70%) and believe that patient anxiety is a
barrier to care; additionally, more than 90% of both general and pediatric dentists report
that the treatment of anxious children is difficult (Diercke et al., 2012; Martin et al., 2002;
Weiner & Weinstein,1995). In a survey of dental practitioners, it was found that 21% of
dentists respond to a patients’ anxiety with frustration or anger while 97% perceive
anxious patients as uncooperative and disruptive (Weiner & Weinstein, 1995). Dentists
often equate a child’s fear with his or her inability to accept treatment.
Dental fear and anxiety in ASD. Interestingly, many studies note the increased
fear and stress demonstrated by children with autism in the dental operatory, and one
study notes that 26% of parents of children with autism, developmental disabilities, or
Down Syndrome report that their child is afraid of the dentist (Nelson et al., 2011), but
no studies currently exist in which researchers examined the incidence of dental anxiety
in children with autism, either in isolation or as compared to other special needs or
33
typically developing populations. However, research indicates that high levels of anxiety
and anxiety disorders are common in children with pervasive developmental disorders,
including ASD, (Bradley et al., 2004; Gadow et al., 2004; Gillott et al, 2001; Green &
Flanagan, 2008; Kim et al., 2000; Sukhodolsky et al., 2008; Weisbrot et al., 2005),
which in typical populations is thought to be associated with dental fear and anxiety
(Bedi et al., 1992).
Behavior
Although “cooperation” is a relative term, uncooperative and problematic
behaviors in the dental office include: hyperactivity, quick frustration, short attention
span, impulsivity, agitation, anger, self-stimulatory, self-injurious, repetitive, aggressive
and disruptive behaviors as well as temper tantrums or meltdowns (Friedlander et al.,
2003; 2006; Kamen & Skier, 1985; NIDCR, 2004). Repetitive behaviors and
unpredictable, uncontrolled and impulsive body movements may also complicate dental
care by endangering patient safety and posing risk of injury to the dental staff (NIDCR,
2004).
Children with ASD are a heterogenous group; some may have the ability to
cooperate with dental treatment, especially when the dental professional has special
expertise and extra time, while others may be nearly impossible to examine without the
assistance of advanced behavior techniques such as restraint or pharmacologic
methods (Davila & Jensen, 1988; Lyons, 2009; Marshall et al., 2008).
Ultimately, the dental environment is not a good fit for a child with ASD, possibly
leading to behavior difficulties such as uncooperative and problematic behaviors.
Whether lack of cooperation stems from communication difficulties (Loo et al., 2008;
34
Marshall et al., 2007), changes in the environment or daily routines (Friedlander et al.,
2006), experience of sensory stimuli (Ayres, 1964; Baranek et al., 2006; Bundy &
Murray, 2002; Kimball, 1999; Lane, 2002; Miller et al., 2007c; Miller-Kuhaneck, 2011;
Parham & Mailloux, 2010; Souders et al., 2002; Tomchek, 2010), or dental fear and
anxiety (Diercke et al., 2012; Martin et al., 2002), many people with ASD exhibit
behavioral difficulties in addition to the core autistic characteristics (Tsai et al., 1996),
representing a behavior management problem for the dentist.
Behavior difficulties in children with ASD occur in the dental environment
significantly more often than in their unaffected peers, despite age (Loo et al., 2009;
Fahlvik-Planefeldt & Hersstrom, 2001; Loo et al., 2008; Gurney et al., 2006), with
research indicating that approximately 50-72% of children with ASD exhibit
uncooperative behavior during dental treatment (Brickhouse et al., 2009; Gurney et al.,
2006; Hulland & Sigal, 2000; Loo et al., 2008; 2009; Marshall et al., 2007; Klein &
Nowak, 1999). However, studies have found that uncooperative behaviors exhibited by
children with ASD in the dental office are associated with: younger age (Marshall et al.,
2007; Loo et al., 2009), concurrent diagnosis(es) (Marshall et al., 2007; Loo et al.,
2009), difficulty with receptive or expressive language (Marshall et al., 2007), sensory
sensitivities (Stein et al., 2011), attending special education classes (Marshall et al.,
2007), not participating with toothbrushing in the home (Marshall et al., 2007), difficulty
getting a haircut (Marshall et al., 2007), being unable to access dental care within the
last year (Brickhouse et al., 2009), not having a regular dentist (Brickhouse et al., 2009),
having longer time periods between dental appointments (Brickhouse et al., 2009), and
35
treatment with advanced techniques such as restraint and general anesthesia (Loo et
al., 2009).
Regardless of the reason, uncooperative behavior during treatment may impede
care (Crall, 2007; Friedlander, 2005; Loo et al., 2008; Marshall et al., 2007; NIDCR,
2004); in fact, people with ASD without severe behavioral problems have been reported
to be able to cooperate during dental treatment with use of only basic behavioral
guidance techniques (Friedlander, 2005; Loo et al., 2009). According to dentists, the
greatest barrier to their willingness to treat children with disabilities is the child’s
behavior, with 60-80% of dentists stating that they were unwilling to treat patients with
developmental disabilities because of their resistive behaviors (Casamasimo et al.,
2004; Clevenger et al. as cited by Lyons, 2009). These behaviors may require behavior
management techniques beyond the capability of the typically trained dental
professional, causing many practitioners to feel reluctant and inadequately prepared to
treat patients with problems such as these (AAPD, 2011-12a; Siegel, 1985; Stiefel,
2002).
These resistant behaviors may be the determining factor in deciding if treatment
occurs in the dental office setting or elsewhere (e.g., a hospital). Many practitioners
believe that dental restraints and positioning devices are necessary with this population
so care can be provided in a safe manner (Burtner & Dicks, 1994; AAPD, 2011-12-
BGTs). However, if the dental team is not familiar with behavioral management
strategies for children with special needs, the tendency is to refuse to treat the child and
refer him or her elsewhere, such as to hospitals which may provide dental care under
general anesthesia (Hulland & Sigal, 2000; Lyons, 2009). In a retrospective study to
36
determine characteristics of patients who were referred for dental treatment in the
hospital setting under general anesthesia, behavioral problems had the strongest
correlation to dental treatment in the hospital, and the patient having a diagnosis of
autism was the fifth strongest characteristic related to location of treatment (Hulland &
Sigal, 2000).
Sensory Processing
“Sensory processing is an encompassing term that refers to the way in which the
CNS [central nervous system] and the peripheral nervous system manage incoming
sensory information from the seven peripheral sensory systems” (Miller & Lane, 2000,
p. 2). Through modulation of this sensory input, facilitation and inhibition in the CNS
allow us to respond to relevant information, ignore that which is not, and generate
appropriate behavioral responses (Ayres, 2005, p. 36; Lane, 2002).
Sensory processing difficulties occur when sensory information is processed and
perceived by the brain atypically, such that responses to differing types of sensory
stimuli are not graded appropriately, leading to over- or under- reactions to stimulation
(Baranek et al., 2006; 2007). According to Dunn’s Model of Sensory Processing,
people’s responses to sensory input vary based on differing neurological thresholds
(how reactive they are to stimuli) which exist along a continuum (Brown et al., 2001;
Dunn, 2001). Those with low neurological thresholds require less intense or less
frequent sensory stimulation to excite the nervous system and elicit a behavioral
response while people with high thresholds require stronger and more intense input to
elicit a behavioral response (Brown et al., 2001; Dunn, 2001; Reynolds & Lane, 2008b).
It is important, however, to note that neurological threshold can vary within an individual
37
based on internal and external conditions as well as the type of sensory input (Dunn,
2001).
Sensory processing difficulties include a wide array of responses, including
sensory over-responsiveness (defensiveness) and sensory under-responsiveness, and
can occur across all sensory domains (e.g., tactile, auditory, visual; Harrison & Hare,
2004; Tomchek, 2010). Difficulties modulating sensory information can lead to
inappropriate reactions to sensory stimuli, which can be detected both behaviorally and
physiologically (Gavin et al., 2011; McIntosh et al., 1999; Reynolds & Lane, 2008b;
Schoen et al., 2008b; Tomchek, 2010). These difficulties have the potential to
negatively impact dental treatment (NIDCR, 2004).
Sensory Processing Difficulties: Behavior
Types of sensory processing difficulties.
Sensory Over-responsiveness. People with low neurological thresholds are
said to have an over-responsive nervous system, causing them to notice stimuli present
in daily life more so than others (Brown et al., 2001; Dunn, 2001; Reynolds & Lane,
2008b). This leads to an exaggerated and aversive response to stimuli that others
would consider non-noxious, resulting in fight, fright or flight reactions, including:
physical withdrawal, vocal outbursts, aggressive behaviors, tantrums, or attempts to
block the stimuli (Ayres, 1964; Baranek et al., 2006; Bundy & Murray, 2002; Kimball,
1999; Lane, 2002; Miller et al., 2007c; Miller-Kuhaneck, 2011; Parham & Mailloux, 2010;
Souders et al., 2002; Tomchek, 2010). Research indicates that this pattern of sensory
processing is also associated with increased levels of anxiety and may be related to the
adherence to strict daily routines (Dunn, 2001; Engel-Yeger & Dunn, 2011; Lane et al.,
38
2010). These difficulties have the ability to impede participation in a variety of activities
as well as the day to day functioning of individuals and quality of life (Engel-Yeger &
Dunn, 2011; Koenig & Rudney, 2010; Stein et al., 2011; Williams, 2009), and have been
shown to be negatively correlated with measures of adaptive behavior (Baker et al.,
2008).
Sensory Under-responsiveness. People with high neurological thresholds are
said to have an under-responsive nervous system, causing them to often not notice and
respond to sensory events around them (Brown et al., 2001; Dunn, 2001; Miller et al.,
2007c; Parham & Mailloux, 2010; Reynolds & Lane, 2008b). Some children who are
under-responsive may seek high levels of sensation through constant movement,
jumping, bumping into objects or others, etc. (Lane, 2002; Miller et al., 2007c; Parham &
Mailloux, 2010). These difficulties can also impact daily functioning, social interactions
and participation activities (Lane, 2002; Miller et al., 2007c; Parham & Mailloux, 2010).
Sensory processing difficulties in a typically developing population.
Although clearly more frequent in clinical populations, reports of sensory processing
abnormalities do exist in typically developing populations. Research indicates that,
based on parent perception, approximately 5-33% of typically developing children
experience difficulty with sensory processing (Ahn et al., 2004; Ben-Sasson et al.,
2009a; Leekam et al., 2007; Tomchek & Dunn, 2007). Additionally, there is preliminary
evidence to suggest that over-responsivity to sensory stimuli may occur not only
alongside other diagnoses, but potentially as a sole diagnosis in the typical population
(Reynolds & Lane, 2008b).
39
Sensory processing difficulties in people with ASD. Although sensory
processing difficulties have been found in various populations, including children with:
developmental delay (Baranek et al., 2007), attention deficit/hyperactivity disorder
(Ghanizadeh, 2008), Fragile X Syndrome (Baranek et al., 2008), Fetal Alcohol
Spectrum Disorder (Wengel et al., 2011), and children who have experienced prolonged
institutional care (Cermak & Groza, 1998; Lin et al., 2005; Wilbarger et al., 2010), a
population with a high prevalence of sensory processing difficulties is individuals with
autism spectrum disorder (ASD). In fact, some believe the presence of sensory
differences should be considered for inclusion in the new DSM5 diagnostic criteria
(Chamak et al., 2008; Kerns et al., 2007; Lord & Bishop, 2010), as reports indicate that
between 69% and 95% of children with ASD exhibit some form of sensory processing
difficulties (Baker et al., 2008; Baranek et al., 2006; Ben-Sasson et al., 2009b; Tomchek
& Dunn, 2007).
Atypical responses in this population have been reported to exist across the
lifespan (Dawson & Watling, 2000; Leekam et al., 2007) and can be found in one or
more sensory modalities, including: visual, vestibular, auditory, tactile, auditory,
olfactory and gustatory (Baranek, 2002; Baranek et al., 2007; Leekam et al., 2007;
Rogers et al., 2003; Tomchek & Dunn, 2007). Sensory processing has been measured
in a variety of ways in children with ASD, most commonly utilizing parental
questionnaires or interview such as the Short Sensory Profile (SSP; Dunn, 1999),
Sensory Over-Responsivity Inventory (SensOR; Schoen et al., 2008a), Sensory
Experiences Questionnaire (SEQ, formerly named the Sensory Supplement
40
Questionnaire; Baranek et al., 2006 citing Baranek, 1999b), and the Diagnostic
Interview for Social and Communication Disorders (DISCO; Leekam et al., 2002).
Tomchek and Dunn (2007) used the Short Sensory Profile (SSP) to investigate
sensory processing in typically developing children and children with ASD (n=281 in
each group), aged 3-6 years old and matched for age. Results indicated that 95% of
children with ASD had some degree of sensory processing differences, with the
greatest differences existing in the under-responsive/seeks sensation (86%), auditory
filtering (78%), tactile sensitivity (61%), and taste and smell sensitivity (54%) sections.
Scores on all SSP sections as well as the Total Score were significantly different
between the two groups (all p’s<.000).
Utilizing the Sensory Experiences Questionnaire (SEQ), Baranek et al. (2006)
examined sensory processing in 258 children between 5-80 months categorized by five
diagnostic groups: autism, pervasive developmental disorder (not including autism),
developmental disability/mental retardation, other developmental disability, and typically
developing. The autism group had significantly higher overall scores, as compared to
other groups. Specifically, 69% of children in the autism group were reported to have
sensory symptoms. Of these children with sensory symptoms, 56% were reported to be
hyper-responsive, 63% hypo-responsive, and 38% a combination of the two.
Leekam et al. (2007) used the Diagnostic Interview for Social and
Communication Disorders (DISCO) to explore sensory processing differences between
children with ASD (n=33; separated into high and low functioning), a low functioning
clinical comparison group (developmental disability; n=19), a high functioning clinical
comparison group (language impairment; n=15), and typically developing children
41
(n=15), 34-140 months and matched on age. Significantly more children with autism had
sensory symptoms and higher mean total scores versus comparison groups, with 94%
of the autism group having sensory symptoms, and 70% having sensory symptoms
across multiple sensory domains. Additionally, authors investigated sensory processing
and age, studying 200 children and adults (32 months-38 years) with high- and low-
functioning autism, with results indicating that sensory abnormalities are pervasive
across age and ability.
Sensory Processing Difficulties: Psychophysiology
In addition to the presence of sensory abnormalities found in typically developing
and ASD populations via behavioral assessments (e.g., parental questionnaire or
interview), psychophysiological measures of the autonomic nervous system also
confirm that differences exist between people with and without sensory abnormalities,
as measured by electrodermal activity (EDA; Chang, 2009; McIntosh et al., 1999; Miller
et al., 2001), vagal tone (Schaaf et al., 2003; Schaaf et al., 2010), and
electroencephalography (EEG; Davies & Gavin, 2007; Davies et al., 2010; Gavin et al.,
2011); however, physiological results have illustrated more variable findings than
behavioral measures.
Electrodermal activity. Electrodermal activity (EDA, previously named the
galvanic skin response) provides a physiological marker of responses to stimuli,
especially those that are emotional, stressful, or require attention or information
processing (Dawson et al., 2000; Hugdahl, 1995). Specifically, EDA measures the
ability of the skin to conduct an electrical current, which increases when the sympathetic
nervous system is activated. This form of testing is done most frequently by the
42
application of two silver-silver chloride electrodes, with electrode paste with the same
NaCl concentration as the skin, to either the distal or medial phalynx of the second and
third digits or to the thenar and hypothenar eminences of the palm of the non-dominant
hand (See Figure 2.1). A small current is passed through the two electrodes, and
changes in skin conductance are measured based on activation of the sympathetic
nervous system which causes the eccrine sweat glands to become hydrated and thus
more conductive (less resistant) to the passage of current (Dawson et al., 2000;
Hugdahl, 1995; Stern et al., 2001).
EDA can be measured in a tonic or phasic manner. Tonic activity level is an
overall baseline level of the electrical conductivity of the skin, often measured by skin
conductance level (SCL), and phasic activity is a fast response occurring seconds after
a stimulus, measured by skin conductance response (SCR); both SCL and SCR are
measured in μS (microsiemens, also known as μmho or micromhos). Additional phasic
responses called nonspecific skin conductance responses (NS-SCRs, or spontaneous
fluctuations, SFs) can occur in the absence of an identifiable stimulus; these are most
frequently measured by rate of NS-SCRs per minute and tend to be positively correlated
with SCL (Dawson et al., 2000; 2007; Hugdahl, 1995; Stern et al., 2001). See Figure 2.2
for a visual portrayal of SCL and NS-SCRs. EDA components, such as SCL and NS-
SCRs, exhibit significant test-retest stability for both clinical (including ASD) and control
populations; correlation coefficients range from 0.40-0.85 (Dawson et al., 2000; Schell
et al., 2002; Schoen et al., 2008b). See Table 2.1 for definitions and typical values of
EDA measures.
43
In longer-lasting situations, including those with long stimulus exposures,
ongoing measurement of skin conductance level (SCL) and frequency of non-specific
skin conductance responses (NS-SCRs) are the most useful electrodermal measure
(Dawson et al., 2000; 2007; Hugdahl, 1995). It is well-documented that tonic EDA
readings, such as SCL and number of NS-SCRs increase in stressful or painful
situations as well as during task performance (Dawson et al., 2000; Hugdahl, 1995).
Figure 2.1. Three electrode placements for recording electrodermal activity. Placement
#1 involves volar surfaces on medial phalanges, placement #2 invovles volar surfaces
of distal phalanges, and placement #3 involves thenar and hypothenar eminences of
palms. From The Electrodermal System (p. 205), by M.E. Dawson, A.M. Schell & D.L.
Filion, 2000, in J.T. Cacioppo, L.G. Tassinary, and G.G. Berntson (Eds.), Handbook of
Psychophysiology, 2
nd
ed. (pp. 200-223). Copyright (2000) by Cambridge University
Press. Reprinted with permission.
44
Figure 2.2. Two hypothetical skin conductance recordings during 60 seconds of rest.
Phasic increases in SCL in the absence of an identifiable stimulus, as seen above, are
categorized as NS-SCRs. Adapted from The Electrodermal System (p. 164), by M.E.
Dawson, A.M. Schell & D.L. Filion, 2000, in J.T. Cacioppo, L.G. Tassinary, and G.G.
Berntson (Eds.), Handbook of Psychophysiology, 2
nd
ed. (pp. 200-223). Copyright
(2000) by Cambridge University Press. Reprinted with permission.
Table 2.1
Electrodermal Measures, Definitions, and Typical Values used for Long Lasting
Situations
Measure Definition Typical Values
Skin conductance level
(SCL)
Tonic level of electrical
conductivity of skin
2-20 μS
Change in SCL Gradual changes in SCL
measured at two or more
points in time
1-3 μS
Frequency of nonspecific
skin conductance
responses (NS-SCRs)
Number of SCRs in absence of
identifiable eliciting stimulus
1-3 per minute
Note. Adapted from The Electrodermal System (p. 207), by M.E. Dawson, A.M. Schell &
D.L. Filion, 2000, in J.T. Cacioppo, L.G. Tassinary, and G.G. Berntson (Eds.),
Handbook of Psychophysiology, 2
nd
ed. (pp. 200-223). Copyright (2000) by Cambridge
University Press. Reprinted with permission.
45
Physiological correlates of sensory processing difficulties in a typically
developing population. Research indicates that distinct physiological patterns of
noticing and habituating to sensory stimuli related to different neurological thresholds
exist and align with Dunn’s Model of Sensory Processing in both typical children and
adults (Brown et al., 2001; Dunn, 2001; McIntosh et al., 1999). In a study of 20 adult
participants whose total Adult Sensory Profile scores indicated that they were at the
extremes of Sensory Over-responsiveness and Sensory Under-responsiveness
(sensory sensitivity (n=5)/sensation avoiding (n=5) and low registration (n=5)/sensation
seeking (n=5), respectively), significant differences in electrodermal activity were found.
As expected, Sensory Over-responders exhibited significantly larger amplitude SCRs as
compared to the Under-responders in response to auditory stimuli (Brown et al., 2001).
Behavioral and physiological research also supports the existence of sensory over-
responsivity in ~20% of typically developing children (Lane et al., 2010).
McIntosh et al. (1999) investigated physiological responses to sensory stimuli in
typically developing children clinically diagnosed with sensory-modulation disruptions
(SMD) and no comorbid diagnoses with age and sex-matched typically developing
control children (n=19 in each group). Children were diagnosed with SMD based on the
child’s behavior during intake testing, telephone interview with parents, and a detailed
open-ended parent interview and were described as over- or under-reactive to sensory
stimuli or a combination of both. Analyses following the presentation of sensory stimuli
in varying modalities (e.g., olfactory, auditory, visual, tactile, vestibular) found significant
differences in EDA between typical and SMD children. More specifically, in comparison
to typical children, significantly more children in the SMD group were non-responders,
46
exhibiting no SCRs greater than .05μS to any stimuli (n=4). After excluding non-
responders, a pattern of hyper-responsiveness was found, with children with SMD
showing significantly larger magnitude and frequency of responses to stimuli as well as
slower habituation.
Physiological correlates of sensory processing difficulties in people with
ASD. Just as sensory processing difficulties have been identified in many disorders
using behavioral measures, they have also been identified using physiological
measures such as EDA in populations such as ADHD (Lane et al., 2010), Fragile X
Syndrome (Miller et al., 1999), Schizophrenia (Dawson & Schell, 2002), developmental
disabilities (Shapiro et al., 2009a; 2009b) and ASD (Barry & James, 1988; James &
Barry, 1984; Miller et al., 2001; Palkovitz & Wisenfeld, 1980; Schoen et al., 2008b;
Schoen et al., 2009; Stevens & Gruzelier, 1984; van Engeland, 1984). However, as
children with ASD seem to be a heterogeneous group, findings have been inconsistent,
with some research suggesting over-responsivity, some suggesting under-responsivity,
and yet others suggesting mixed results.
Studies indicating EDA over-responsivity. In a study by Palkovitz and
Wisenfeld (1980), researchers investigated the differences in EDA between boys with
autism, aged 5.8-10.0 years and their sex-, chronological age-, and race-matched
typically developing counterparts to three different auditory stimuli. Stimuli included
three conditions arranged in a counterbalanced manner: (1) a 5-sec 500 Hz pure tone,
(2) a spoken phrase of nonsense words (e.g., sponzel nirem, shern), and (3) a
meaningful spoken phrase [e.g., Listen to me, (subject’s name)]; each condition
included five consecutive trials of the stimulus. Results indicated that the autism group
47
had a significantly higher mean SCL and significantly greater number of NS-SCRs than
the control group. Additionally, the autism group had higher mean amplitude changes
(SCRs) as compared to the TD group in all conditions, but the differences were not
significant.
James and Barry (1984) examined skin resistance responses to both visual
stimuli (10 white, 9x9cm squares on a black background shown on a video monitor) and
auditory stimuli (10 tones, each 2400Hz and 50dB through circumaural headphones).
Participants were 40 children with autism, split into young (4.6-9.8 years) and old (10.4-
16.11 years) groups; 40 children with mental retardation, matched by sex, chronological
age and IQ; and 40 typically developing children, matched by sex and chronological
age. Results revealed a hyper-responsivity of the autism group, which displayed
significantly greater response magnitudes for both visual and auditory stimuli as
compared to the MR and TD groups, regardless of age; auditory stimuli tended to elicit
slightly larger responses, as compared to visual stimuli, in the autism group. The autism
group also failed to habituate back to baseline across trials, while both the MR and TD
groups did so. Additionally, there was no evidence of non-responders in this study.
In a study furthering their past work, Barry and James (1988) examined skin
resistance responses to differing magnitudes of visual and auditory stimuli. Visual
stimuli were small (4.5x4.5cm) or large (9x9cm) white squares on a black background
presented on a video monitor, and auditory stimuli were 2400Hz tones at low intensity
(33dB) or moderate intensity (50dB) experienced through circumaural headphone.
Participants included 32 children with autism, split into young (4.9-9.11 years) and old
(12.0-17.2 years) groups; 32 children with MR matched by sex, chronological age and
48
IQ, and 32 TD children, matched by sex and chronological age. Results indicated that
the autism group exhibited a significantly larger magnitude for the initial response of all
four conditions as compared to both MR and TD groups. Mean response magnitudes of
the autism group were also significantly greater than both other groups. Larger
magnitude responses were elicited by greater intensity (large visual, loud auditory)
stimuli in all groups. Additionally, the autistic group did not habituate to either visual or
auditory stimuli, although both control groups exhibited a reduction in response
magnitude over trials to both modalities of stimuli.
Studies indicating EDA under-responsivity. Conversely, other researchers
have found EDA under-responsivity, not over-responsivity, in response to sensory
stimuli in children with ASD. For instance, Schoen et al. (2009) investigated differences
in EDA in 38 children diagnosed with Asperger’s Syndrome or high-functioning autism
(5-15 years), 31 children diagnosed with Sensory Modulation Disorder (SMD; 5-13
years and diagnosed via clinical observation and in-depth parent interview) and 33
typically developing children (4-12 years). Using the Sensory Challenge Protocol, a
physiologic laboratory paradigm in which participants are exposed to eight trials each of
five types of sensory stimuli (auditory, visual, olfactory, tactile, vestibular), both tonic
and phasic measures of EDA were collected and analyzed. Results indicated that
children in the autism group had significantly lower SCL at baseline as compared to
both SMD and TD groups, and exhibited the lowest SCR magnitude, amplitude and
orienting responses across all sensory domains, in comparison to both groups. The
autism group had the highest percentage of non-responders (34%) as compared to the
SMD and TD groups (19% and 27%, respectively), although not significantly so.
49
Additionally, all three groups exhibited habituation to the stimuli across trials. This study
suggests that children with autism have atypically low physiological arousal as well as
atypically low physiological reactivity to sensory stimuli.
Miller et al. (2001) also utilized the Sensory Challenge Protocol to examine
sensory processing in typically developing children (n=46, 3-13 years), children with
Fragile X Syndrome (n=23, 3-12 years), and children with autism (n=8, 5-13 years),
children with ADHD (n=40, 5-13 years), and children with SMD (n=32, 3-9 years).
Results found that children with autism were under-responsive to sensory stimuli across
trials, evidenced by smaller SCR magnitudes, as compared to all four other groups.
Studies indicating mixed EDA results. Stevens and Gruzelier (1984) examined
EDA in response to both low intensity and high intensity auditory stimuli in 20 children
with autism and those that were TD or had MR, matched for age (chronological and
mental), handedness and sex. Participants heard 1,000Hz tones via headphones, with
13 70dB tones of 1 sec duration and 5 90dB tones of 3 sec duration. Results found no
significant differences in number of NS-SCRs or response amplitudes to either 70dB or
90dB tones between groups. However, the autism group did exhibit higher SCL, an
increase in SCL over trials, and a tendency to habituate slower and longer latencies.
Van Engeland (1984) investigated the skin conductance responses to 24
acoustic stimuli (85dB, 1 sec duration) presented through bilateral headphones in 32
children with autism, 45 TD children, 38 children who were non-psychotic psychiatric
patients, and 20 children with Down’s Syndrome and MR; groups were not matched on
any variables. Analyses revealed no significant differences between groups, other than
a significantly greater number of children in the autism group who were non-responders,
50
as compared to the three control groups (~30% vs. 1-4%). These non-responders
showed fewer NS-SCRs before stimulation and had a tendency to be hypo-responsive
across trials. However, although there were not significant differences in number of NS-
SCRs, each group was further divided into “high” and “low” NS-SCR groups based on
the number of NS-SCRs during baseline recording (≥6 and ≤5 NS-SCRs, respectively).
When comparing autistic children in the high and low subgroups, those in the high
group had greater responsivity on the first trial, larger amplitudes, slower habituation,
shorter recovery times, and faster recovery rates (5 of 6 measures significantly
different); when comparing the high and low subgroups in the other control groups, a
maximum of two variables were significantly different based on NS-SCR sub-groups,
indicating that EDA measures vary differently in the four groups, even when comparing
high NS-SCR subgroups to low NS-SCR subgroups. Next, all four groups’ low NS-SCR
subgroups were compared, with the only significant difference found being the greater
number of children in the autism low NS-SCR group who were non-responders.
Comparing the high NS-SCR subgroups revealed that the autism high NS-SCR group
had significantly faster recovery rate as compared to the other three groups.
Schoen et al. (2008b) utilized the Sensory Challenge Protocol to investigate the
arousal and sensory reactivity in 38 children (5-15 years) diagnosed with high
functioning autism (HFA; n=27) or Asperger’s Syndrome (AS; n=11). Results found no
significant differences in EDA variables between groups; therefore, both HFA and AS
children were treated as a single ASD group for analyses. Baseline SCL was plotted for
each participant, with results suggesting that children with ASD fall into either high or
low arousal groups. These tonic patterns remained stable across the experiment, with
51
correlations found in both high and low arousal groups between baseline SCL and
recovery SCL as well as baseline SCL and mean SCL during stimulus presentation.
The high arousal group tended to exhibit higher magnitudes, faster latencies and slower
habituation, and vice versa for the low arousal group. Additionally, 29% of the sample
was classified as non-responders in at least one of the six sensory domains.
Summary. Overall, EDA findings in children with ASD are variable, both with
phasic and tonic measures of reactivity. However, recent research suggests a two-
group (bimodal distribution) pattern of children with ASD, some with physiological
sensory over-responsivity and others with under-responsivity. This pattern has been
found in people with schizophrenia, as well, with approximately 20% and 15% of people
with schizophrenia exhibiting SCLs higher and lower, respectively, than the control
population (See Figure 2.3; Dawson et al., 1992). It is possible that due to the
heterogeneous nature of children with ASD, this pattern may explain the discrepancies
in past EDA findings, as hypo-responsive children may have balanced out hyper-
responsive children when results were averaged within the ASD group (Brett-Green et
al., 2004; Hirstein et al., 2001; Schoen et al., 2008b; van Engeland, 1984). Studying
children with ASD, the results of Schoen et al. (2008b) and Brett-Green et al. (2004)
support the two-group pattern hypothesis, categorized by skin conductance level (See
Figure 2.4). Their findings suggest that the over-aroused group (defined as high SCL)
tend to have higher magnitudes, faster latencies, increased frequency of NS-SCRs, and
slower habituation; the under-aroused group (defined as low SCL) tends to have lower
magnitudes, slower latencies, fewer NS-SCRs, and faster habituation. It is suggested
that individuals with atypically high levels of arousal may experience difficulty with
52
information processing and difficulty discriminating between relevant and irrelevant
information (Hirstein et al., 2001; Schell et al., 2005), while those with atypically low
levels may have difficulty attending to and processing environmental stimuli (Bernstein
et al., 1982; Hirstein et al., 2001; Schell et al., 2005; Schoen et al., 2008b).
Conversely, other researchers hypothesize that some over-responsive children
with ASD may experience overstimulation from sensory stimuli, leading to a shutdown
and non-responding to subsequent stimuli (Kimball, 1999; Lane, 2002; van Engeland,
1984). This is sometimes referred to as a “paradoxical reaction”, and refers to an
abnormal inhibition of responses that acts as a defensive strategy in order to protect
humans who are overloaded or overwhelmed by sensory stimulation (van Engeland,
1984). This may explain why research indicates that more children with autism exhibit
non-responding to stimuli in experimental settings as compared to typically developing
children, children with SMD, children with MR and non-psychotic children who are
psychiatric patients (Schoen et al., 2009; van Engeland, 1984), at a prevalence of 29-
34% (Schoen et al., 2008b; 2009; van Engeland, 1984).
53
Figure 2.3. Frequency distribution of mean log skin conductance levels for patients with
schizophrenia (n=98) and control subjects (n=40). Note that SCLs in the clinical
population exist in levels both above and below those of the control group. Adapted
from “Electrodermal Anomalies in Recent-Onset Schizophrenia: Relationships to
Symptoms and Prognosis,” by M.E. Dawson, K.H. Nuechterlein, and A.M. Schell, 1992,
Schizophrenia Bulletin, 2, p. 301. Copyright 1992 by Schizophrenia Bulletin.
Figure 2.4. Categorization of high and low arousal subgroups within children with
Asperger’s Syndrome or High Functioning Autism. Cut-point (6μS) was based on mean
and standard deviations in baseline SCL. Adapted from “Psychophysiology of Children
with Autism Spectrum Disorder,” by S.A. Schoen, L.J. Miller, B. Brett-Green and S.L.
Hepburn, 2008, Research in Autism Spectrum Disorders, 2, p. 423. Copyright 2007 by
Elsevier Ltd.
54
Environmental Characteristics that Act as Barriers for Children with ASD
Sensory Stimuli, Specifically in the Dental Environment
Barriers to proper oral care children with ASD face may be also due to the
environment, in addition to the personal characteristics of the child which may act as
obstacles. Maladaptive behaviors displayed by children with autism may be partially due
to sensory sensitivities, not only behavioral issues as often believed (Shapiro et al.,
2001). If this is true, the surrounding environment and sensory stimuli are of extreme
importance, as they have the potential to impact the child’s behavior significantly. Many
sensory stimuli in the everyday environment may be experienced as aggravating by a
child with autism, but these become even more exacerbated in the dental office. For
example, the overhead lighting in dental offices is very bright, often using fluorescent
lights that commonly flicker. There may be loud, unfamiliar noises surrounding the child,
especially if a dental drill is required. The dentist or dental hygienist touches the child’s
mouth, an extremely sensitive area, trying to hold it open or manipulate it, all the while
providing possibly noxious tactile stimuli to the child. Lastly, the texture, taste and smell
of products used in the dental office and in the child’s mouth during treatment may lead
to maladaptive behaviors if the child displays a hyper-responsive reaction to these
stimuli.
Atypical responses can be seen in children with ASD’s reactions to various
sensory stimuli, including: visual, vestibular, auditory, tactile, auditory, olfactory and
gustatory. Of the many sensory systems that may be affected by sensory processing
difficulties, tactile, gustatory, visual and olfactory sensitivities are especially apparent in
the dental setting (NIDCR, 2004). Recent research suggests that children with ASD are
55
reported to have definite differences (scores greater than two standard deviations from
the mean of TD children) in all these categories (Tomchek & Dunn, 2007). In addition,
hypersensitivity in and around the mouth may be a significant problem, leading to
extreme aversive responses to touch in the mouth and different textures of prophylaxis
paste, fluoride or objects placed in the mouth (Case-Smith & Humphry, 2001). Reports
suggest that 31-46% of low- and high-functioning children with autism exhibit other oral
sensory symptoms, separate from taste, texture, or touch symptoms (Leekam et al.,
2007); in fact, in one study investigating barriers to dental care, 35% of parents reported
that their child with autism, developmental delay or Down syndrome doesn’t like to have
anything done to his or her mouth (Nelson et al., 2011). Links between sensory
processing difficulties and both oral care difficulties and behavioral difficulties in the
dental office have been reported (Stein et al., 2011).
As stated above, a child with autism may be especially sensitive to these external
stimuli, and may try to cover his or her eyes or ears in response to bright lights or
unfamiliar machinery noise, may avoid looking at or be bothered by decorations that
may be pleasing to others, and flinch or move away from being touched by instruments
or people on the dental team (Burkart, 1984; Gurney et al., 2006). In fact, in a study of
children with developmental disabilities displaying either stereotypic or self-injurious
maladaptive behaviors, exposure to indirect diffuse lighting, as compared to unshielded
standard fluorescent lamps, led to an increase in duration of adaptive behaviors and
decrease in maladaptive behaviors in the classroom setting (Shapiro, Roth & Marcus,
2001).
56
Additionally, Shapiro et al. (2009a,b) studied the effect of changing the sensory
environment of a dental office during routine dental prophylaxis in children with
developmental disabilities and found resultant changes in both negative overt behaviors
as well as physiological indicators of anxiety. Behavioral results included significant
reduction in duration and magnitude of anxious behaviors exhibited in the sensory-
adapted environment; cooperation level during treatment was also significantly higher in
the sensory-adapted environment, both in comparison to prophylaxis in the routine
dental environment. Physiological indicators of anxiety and relaxation mirrored
behavioral results, with children in the sensory-adapted environment exhibiting less
anxiety (arousal) and significantly more relaxation; higher levels of anxiety and less
relaxation was found in the routine dental environment. As indicated in these studies,
adaptation of sensory stimuli provided by the environment has the potential to affect
both behavior and sympathetic nervous system activation of children with sensory
sensitivities. As it is often difficult to manage maladaptive behaviors and the challenges
they create, it is suggested that the development of an environment in which the
problem-causing stimuli are controlled may be beneficial for children with ASD (Green
and Flanagan, 2008).
Summary
It is indisputable that good oral health is important to both psychological and
physiological health (HHS, 2000; Casamassimo, 1996). Proper oral care is an essential
vehicle to achieve good oral health; this includes both oral care in the home (e.g.,
toothbrushing) as well as professional oral care at the dental office at appropriate
frequencies (most commonly one visit per every six months). Inadequate oral care can
57
lead to dental disease which may result in pain, infection, and difficulties with eating and
sleeping, impaired speech, negative behaviors and reduced self-esteem
(Casamassimo, 1996; HHS, 2000; HHS, 2010; Low et al., 1999; OHRC, 2003; OHRC,
2004a; Owens et al., 2006; Thomas & Primrosh, 2002). Additionally, dental disease has
been associated with pneumonia (El-Solh, 2011; Sharma & Shamsuddin, 2011) and
chronic kidney disease (Ioannidou & Swede, 20110; Iwasaki et al., 2011) and is a
possible risk factor for edentulism (Eklund & Burt, 1994; Starr & Hall, 2010),
cardiovascular disease (Beck et al., 1996; Xu & Lu, 2011), and respiratory disease
(Aida et al., 2011).
Despite the importance of oral care, disparities in the access to and practice of
proper oral care exist in the United States. Research indicates that these disparities
exist among certain vulnerable populations, including, but not limited to children from
low income families (CAHMI, 2011b; Mulligan & Seirawan, 2009; Newacheck et al.,
2000a), Hispanic children (CAHMI, 2011b; Dietrich et al., 2008; Shiboski et al., 2003),
and children with special health care needs (CAHMI, 2011a; Davis, 2009; Lewis et al.,
2005; Lewis, 2009; Newacheck et al., 2000b). Children with ASD represent one
population of children with special health care needs that experience disparities in oral
care.
Additionally, although a diagnosis of ASD is not considered to be a direct cause
of dental deficits, the disorder is associated with many risk factors for poor oral health,
including: inadequate oral care, co-occurrence of other disorders, effects of
medications, poor dietary habits, damaging oral habits, difficulty accessing professional
services, and personal and environmental characteristics. Personal characteristics that
58
may act as barriers to oral care include communication challenges, need for rigidity and
routine, dental fear and anxiety, behavioral challenges, and sensory processing
difficulties.
Sensory processing difficulties are reported to be present in 69-95% of children
with ASD (Baker et al., 2008; Baranek et al., 2006; Ben-Sasson et al., 2009b; Tomchek
& Dunn, 2007). These difficulties occur when sensory information is atypically
processed and perceived by the brain, such that responses to differing types of sensory
stimuli are not graded appropriately, leading to over- or under-reactions to stimulation
(Baranek et al., 2006; 2007). The presence of sensory abnormalities can be assessed
with behavioral measures (e.g., parental questionnaires or interview; Baranek et al.,
2006; Dunn, 1999; Leekam et al., 2002; Schoen et al., 2008a) as well as
psychophysiological measures of the autonomic nervous system (e.g., EDA).
Although limited empirical data exists regarding the relationship between sensory
processing difficulties and oral care (Shapiro et al., 2009a, 2009b; Stein et al., 2011;
Stein et al., 2011; 2012b, 2013), many sensory stimuli in the everyday environment may
be experienced as aggravating to children with ASD. Therefore, the stimuli-rich
environment of the dental clinic may also act as a barrier to care for this population
(NIDCR, 2004).
59
CHAPTER THREE: STUDY ONE
Oral Care Experiences and Challenges in
Children with Autism Spectrum Disorders
Overview
This chapter describes the pertinent literature review, research design,
methodology, and results for the first study of this project. The purpose of this study was
to investigate the differences between children with ASD and their typically developing
peers in relation to a variety of aspects of dental care. This study involved the
development, dissemination and analysis of a survey to parents of both typically-
developing children and children with ASD in the southern California area.
Using parental questionnaire data, we examined whether children with a diagnosis of
ASD show a greater prevalence and magnitude of difficulty in oral care in comparison to
typically developing children. (Note: A shorter version of this chapter was published in
Pediatric Dentistry; Stein, Polido, Najera, & Cermak, 2012a).
Literature Review
Autism spectrum disorders (ASD) are characterized by impaired social
interaction, abnormalities in communication, restricted interests, and repetitive and
stereotyped behaviors (APA, 2000), which can negatively affect daily activities
(LaVesser & Hilton, 2010). One such daily activity is that of oral care. These
impairments have the potential to make oral care difficult in a variety of ways. For
example, impaired communication can hinder children’s ability to tell dentists if they are
uncomfortable during treatment and limit the dentist’s ability to use many basic
60
behavioral guidance techniques during treatment (Marshall et al., 2007; NIDCR, 2004).
Stereotypical and repetitive actions can also complicate dentists’ ability to safely and
effectively provide oral care (Green & Flanagan, 2008; Marshall et al., 2007; NIDCR,
2004). Difficulty adjusting to changes in routine can make a visit to the dentist
challenging (Marshall et al., 2007; NIDCR, 2004), and behavioral difficulties, which are
often exhibited by children with ASD, can create obstacles for the dental practitioner
and impact the child’s ability to have a successful dental experience (Casamassimo et
al., 2004; Fahlvik-Planefeldt & Herrstrom, 2001; Loo et al., 2009; Marshall et al., 2007;
NIDCR, 2004).
In addition, factors such as concurrent medical diagnoses, cognitive level, the
effects of prescribed medications, increased or reduced saliva in the mouth, poor
dietary habits, damaging oral habits such as bruxism or pica, poor oral self-care, deficits
in motor coordination, and over-sensitivity to sensory stimuli can contribute to poor oral
health (Casamassimo, 1996; Klein & Nowak, 1999; Kopycka-Kedzerawski & Auinger,
2008; Marshall et al., 2007; NIDCR, 2004; Souders et al., 2002).
Poor oral health can
lead to eating difficulties, speech impediments, oral pain, sleep disturbances, missed
days of school, and decreased self-esteem, ultimately resulting in a negative effect on
health and quality of life (HHS; 2000; Owens et al., 2006).
As the prevalence of ASD has increased substantially in recent years, with
current statistics in the United States reported to be 1 in 110 children (CDC, 2011),
dentists are increasingly more likely to encounter children with ASD in their practice.
Therefore, it is important for dental professionals to further understand the experiences
61
and challenges encountered by children with ASD as they access and engage in oral
care both in the home and dental office.
The purpose of this study was to investigate the differences between children
with ASD and their typically developing peers in relation to a variety of aspects of dental
care. Using parental questionnaire data, we examined whether children with a diagnosis
of ASD would show a greater prevalence and magnitude of difficulty in oral care in
comparison to typically developing children.
Methodology
Design
The research design consisted of a correlational between-group examination of
the relationship between autism diagnosis and oral care variables.
Participants
Participants were parents of children who were either typically developing or had
a diagnosis of ASD and were between 2 and 18 years of age. The ASD group consisted
of 196 children whose parents reported an ASD diagnosis (Autism, n=131; Asperger’s
Syndrome, n=22; PDD-NOS, n=20; or being considered for an ASD diagnosis, n=5; or
more than one of the above, n=18). The Typical group included 202 children who did
not have a diagnosis of ASD, nor any other reported disability or diagnosis (e.g., ADHD,
learning disability, developmental delay). For both groups, children with cerebral palsy
or neuromuscular disorders were excluded, and surveys were included in analyses only
if 90% or more of the survey was completed. Following removal of 48 surveys based on
diagnostic and survey completion inclusion criteria, responses from 398 surveys were
included in the analysis.
62
Instruments
Following a comprehensive literature review of the research regarding oral care
in the ASD population and the analysis of eight oral care related questions included in
Pediatric Therapy Network’s Annual Survey (a 29-item questionnaire designed to
evaluate consumer satisfaction with services received from the clinic; see Stein et al.,
2011), the “Dental Care in Children” survey was developed to elicit information from
parents regarding their child’s experiences with oral care in the home and dental office
as well as with accessing professional oral care. This development was achieved via an
iterative process between myself, Dr. Cermak and Dr. Polido, and was informed by the
shorter survey as well as the literature review. Following pilot testing with two parents of
children with ASD and one parent of a TD child, further edits were made to clarify and
refine the survey. This resulted in a 31 question survey for parents of typically
developing children and a 37 question survey for parents of children with ASD; the last
page of the survey instructed parents to complete questions only if their child has ASD
or is being considered for an ASD diagnosis.
The questionnaire includes questions about: toothbrushing, cavities, experiences
during routine dental prophylaxis, behavioral challenges, sensory challenges, use of
restraint and pharmacological methods during routine prophylaxis, as well as access to
professional oral care. The additional six questions completed only by parents of
children with ASD asked parents: if they believed their child’s behavioral difficulties or
sensory sensitivities made dental appointments challenging, to (if applicable) compare
experiences with their child with ASD to his/her typically developing sibling, and if their
dental practitioner was specialized in working with the population of children with ASD
63
or other special needs. Demographic information was also obtained, including: child’s
gender, age group in which child fell (2.1-4.11, 5.0-7.11, 8.0-10.11, 11.0-13.11, or 14.0-
18.0), method of communication, race, ethnicity, and parental education level. The
survey included dichotomous yes/no answers, Likert-scale based questions, as well as
short answer questions to obtain qualitative data. See Appendix A for survey in English.
Procedures
This study was approved by the University of Southern California Health
Sciences Campus Institutional Review Board prior to subject recruitment and data
collection (HS-09-00597; see Appendix B for IRB approval letter).
Typically Developing Children. Parents of typically developing children were
recruited through Children’s Hospital Los Angeles (CHLA) Dental Clinic or those
attending elementary schools in the Glendora Unified School District (Stanton
Elementary and Sutherland Elementary). A Cover Letter/Recruitment Flyer were
provided to parents, stating that participation in the survey was voluntary and that
consent was assumed by parents’ completion and return of the survey. Parents of
children at CHLA Dental Clinic were provided stamped and addressed envelopes to
return survey. Parents of children attending school in Glendora Unified School District
were instructed to send the completed survey back to the child’s school in his/her
homework folder; surveys were then collected by teachers and sent to the main office
with attendance forms. Completed surveys were placed in a marked box to await
collection by the researcher. Surveys were disseminated in English to Glendora Unified
School District Elementary Schools and in both English and Spanish to CHLA.
64
Children with Autism Spectrum Disorders. Parents of children with ASD were
recruited through Children’s Hospital Los Angeles (CHLA) Dental Clinic, those attending
elementary schools in the Glendora Unified School District (Stanton Elementary,
Sutherland Elementary, and Sellers Elementary), to various occupational therapy clinics
throughout the southern California area (Pediatric Therapy Network, Therapy West,
Center for Developing Kids), and from the southern California area through the
Interactive Autism Network (IAN) Research Database at the Kennedy Krieger Institute
and Johns Hopkins Medicine – Baltimore, sponsored by the Autism Speaks Foundation.
A Cover Letter/Recruitment Flyer were provided to parents, stating that participation in
the survey was voluntary and that consent was assumed by completion and return of
the survey. Parents of children at CHLA Dental Clinic and occupational therapy clinics
were provided stamped and addressed envelopes to return the completed survey.
Parents of children attending school in Glendora Unified School District were instructed
to send the completed survey back to the child’s school in his/her homework folder;
surveys were then collected by teachers and sent to the main office with attendance
forms. Completed surveys were placed in a marked box to await collection by the
researcher. Lastly, for participants recruited through IAN, an identical version of the
survey was created online using SurveyMonkey, allowing for online completion of the
survey. Surveys were disseminated in English to Glendora Unified School District
Elementary Schools and occupational therapy clinics, and in both English and Spanish
to CHLA; the online survey was only available in English.
65
Data Analysis
Completed hard-copy surveys were coded by hand and entered into a data
spreadsheet; data were checked twice to ensure for correct data entry. Online surveys
were re-coded, checked twice, and entered into the spreadsheet. Data were then
imported into Statistical Analysis Software (SAS) version 9.2 for analysis (SAS v.9.2.,
SAS Institute, Inc., Cary, NC). For descriptive purposes, frequencies and percentages
were calculated for each of the oral care variables by group. Fisher’s Exact Probability
tests and Chi-Square tests were performed to test for associations between groups
(ASD vs. Typical) and the dichotomous oral care variables and demographics variables.
For multivariate analyses, logistic regression was used to determine the associations
between groups and the dichotomous oral care variables after controlling for possible
confounding variables. Despite evidence indicating that children with ASD typically
experience greater barriers accessing and tolerating oral care as compared to typically
developing children (Loo et al., 2009; Brickhouse et al., 2009; Nelson et al., 2011), two-
tailed statistical tests were used to provide a more conservative estimate of the
association between diagnosis and oral care variables. All tests were conducted at the
.05 significance level.
Results
Participants
For the 398 completed surveys, parents placed their child in the most appropriate
age category: 2.0-4.11, 5.0-7.11, 8.0-10.11, 11.0-13.11 or 14.0-18.0 years. Age varied
significantly between the ASD and TD groups, as more children in the older age groups
had diagnoses of ASD (p<.0001). Consistent with national statistics (CDC, 2011), the
66
ASD group had significantly more males (n=157) than females (n=36), with a male to
female ratio of 4.4:1. Gender distribution was not statistically different in the typically
developing group (109 male, 90 female; p=.29). Therefore, although an accurate
sampling of the population, gender distribution was significantly different between
diagnostic groups (p<.0001). The diagnostic groups were not significantly different in
regards to race (p=.26), with approximately 75% of children in each group described by
their parent as white or Caucasian. Diagnostic groups were not balanced with respect to
Hispanic status (p=.02); more parents in the Typical Group reported their child to be
Hispanic or Latino. Maternal education level did not differ significantly between
diagnostic groups (p=.22), while paternal education level was significantly different
(p=.02), with more fathers in the Typical Group having a higher level of education. See
Table 3.1 for frequencies of demographic information for each group.
67
Table 3.1
Descriptive Statistics of Gender, Age, Race, Hispanic Status and Parental Education
Typical (N=202) ASD (N=196)
N (%) N (%)
Gender
Male 108 (53.5) 155 (79.1)
Female 90 (44.6) 35 (17.9)
Not reported 4 (2.0) 6 (3.1)
Age
2.0-4.11 47 (23.3) 26 (13.3)
5.0-7.11 60 (30.0) 51 (26.0)
8.0-10.11 67 (33.2) 51 (26.0)
11.0-13.11 12 (5.9) 40 (20.4)
14.0-18.0 13 (6.4) 24 (12.2)
Not reported 3 (1.5) 4 (2.0)
Race
White, Caucasian 142 (70.3) 143 (73.0)
Asian 23 (11.4) 12 (6.1)
Black or African American 5 (2.5) 8 (4.1)
American Indian/Alaska native 2 (1.0) 2 (1.0)
Native Hawaiian or other Pacific Islander 1 (.5) 0 (0.0)
More than one above 19 (9.4) 19 (9.7)
Not reported 10 (5.0) 12 (6.1)
Hispanic Status
Not Hispanic, not Latino 117 (57.9) 135 (68.9)
Hispanic, Latino 83 (41.1) 56 (28.6)
Not reported 2 (1.0) 5 (2.6)
Parental Education Level
Mother
High School or GED 32 (15.8) 35 (17.9)
College 83 (41.1) 91 (46.4)
Graduate Degree or above 83 (41.1) 63 (32.1)
Not reported 4 (2.0) 7 (3.6)
Father
High School or GED 51 (25.2) 41 (20.9)
College 70 (34.7) 89 (45.4)
Graduate Degree or above 68 (33.7) 45 (23.0)
Not reported 13 (6.4) 21 (10.7)
68
Oral Care at Home
As expected, a higher prevalence of children with ASD experienced difficulty with oral
care in the home, compared to typically developing children. Parents of 61% of children
with ASD reported difficulty with their child’s oral care (toothbrushing) on a daily basis,
significantly more than the 10% of parents of typically developing children (p<.0001). Of
the parents who reported difficulty with daily oral care, dislike of both the taste/texture of
the toothpaste and the feeling of the toothbrush in the mouth were reported significantly
more often in the ASD group as compared to the typical group (p’s=.009, .02,
respectively). Children with ASD were reported to brush their teeth significantly fewer
times per week than typically developing children (Mean = 10.5±4.8, Mean = 12.6±3.9
respectively; t (df = 372) = -4.56, p<.0001). In addition, 71% of parents of children with
ASD reported that oral care in the home was more difficult for their child with ASD as
compared to his or her typically developing sibling(s). See Table 3.2.
More than half of the parents of children with ASD reported that their child
required “some or complete” physical assistance with toothbrushing, significantly more
than the 28% of parents of typical children. This occurred although significantly more
children with ASD were in the older age ranges. Of the children in the older age ranges
(11-18 years old), 27% of those with ASD required “some or complete” assistance
during toothbrushing, as compared to only 4% of typical children the same age.
These findings were also supported by the qualitative data obtained from the
survey. Of parents who responded to the open-ended question regarding oral care in
the home, almost all mentioned difficulty with toothbrushing, noting that his/her child
“fights us daily”, “kicks and fights and bites down”, “cries and shuts mouth”, “only allows
69
me to brush his teeth for a very short amount of time”, and/or “screams during
toothbrushing”. Twenty-one percent of parents wrote about sensory difficulties. Parents
mentioned sensitivity to both brushing and toothpaste, as well as gagging, face
contorting, and squirming away during brushing. One parent wrote that his son “did not
want to touch the toothbrush or put toothpaste on the brush or in his mouth”, and
another commented that “we went through many different types of toothpaste,
mouthwash, toothbrushes, different types of floss for our child with autism…[before he]
got the routine down.” Additionally, of the parents who responded to this question, 56%
also noted that more assistance or monitoring was required for their child with ASD, as
compared to his/her typically developing sibling. One parent of a child, wrote that
Teaching the typical sisters how to properly brush and floss their teeth took only
a matter of weeks when they were toddlers. Our daughter with autism [age 11.0-
13.11] is still unable to do these tasks completely. We have her work on it and
then we have to finish the task for her. Usually we miss a lot of teeth because
she’s too resistant to it.
Parents also wrote of difficulties with their child’s behavior in the home (32%), often
requiring adults to “hold him/her down” in order to complete toothbrushing; additionally,
6% of parents mentioned motor control or hand strength as causing difficulty during oral
care in the home.
70
Table 3.2
Home Oral Care Variables by Group (Typical vs. ASD)
ASD Group TD Group
ASD vs. TD
Group
n*
Count
(yes)
%
(yes) n*
Count
(yes)
%
(yes) X
2
P-
value
Difficulty with toothbrushing on a
daily basis
195 119 61
202 20 10
112 <.0001
Dislike of taste and/or texture of
toothpaste
121 66 55
20 4 20
6.87 0.009
Dislike of feeling of the
toothbrush in mouth
121 69 57
20 5 25
5.83 0.02
Child requires some or complete
physical assistance with
toothbrushing
193 100 52
200 56 28
22.28 <.0001
Note. Differences between Typical and ASD groups are tested with Chi-Square test.
*n varies between different variables according to missing data
Oral Care at the Dentist
When asked about their child’s last experience receiving dental prophylaxis at
the dental office, significantly more parents of children with ASD rated their child's
experience as a "negative" experience (38% vs. 4%; p< .0001) and reported that it was
“moderately to extremely” difficult to have the dentist or hygienist clean the child's teeth
(60% vs. 13%; p <.0001), in comparison to parents of typical children. Sixty-nine
percent of parents also reported that visits to the dentist are more stressful for their child
with ASD in comparison to his or her typically developing sibling(s).
At the dental office, significantly more parents of children with ASD, in
comparison to parents of typical children, reported that their child was afraid of, disliked,
or complained about: dentist drilling, bright lights, loud sounds, having someone put
instruments in his or her mouth, leaning back in the dentist's chair, and smells (p<.0001
for all variables). Significantly more parents of children with ASD (52%) reported
71
difficulty with 3 or more of these sensory variables, in comparison to only 6% of parents
of typical children (p<.0001). Similarly, significantly fewer parents of children with ASD,
in comparison to parents of typically developing children, noted that none of these
sensations disturbed their child (13% vs. 63%; p<.0001).
Additionally, significantly more parents of children with ASD reported that
uncooperative behaviors, sensory sensitivities and self-stimulatory behaviors increased
at the dentist, as compared to reports from parents of typically developing children
(p<.0001 for all variables). Within the ASD group, almost 50% of parents reported that
they strongly agreed that their child's behavioral difficulties (e.g., refusing to open
mouth, screaming, not cooperating at dentist's office) as well as their sensory
sensitivities (e.g., difficulty with bright lights, loud waiting room/instruments for cleaning,
managing new tactile/taste sensations) made dental appointments challenging.
Use of restraint “often” or “almost always” in order to routinely clean a child’s
teeth was utilized significantly more for children with ASD, in comparison to typical
children (18% vs. 1%; p<.0001). Additionally, significantly more parents reported that
their child with ASD (37%, n=70) had ever required general anesthesia, sedation or
other drugs for dental prophylaxis, as compared to parents of typical children (5%, n=9;
p<.0001). Of those children requiring pharmacological intervention, parents of children
with ASD cited behavior difficulties (41%), extreme anxiety (64%), and an inability to
cooperate with the dentist (77%) as the reasons why these procedures were necessary.
Lastly, significantly more parents of children with ASD, as compared to typical
children, reported that if their child had to go to the dentist tomorrow to have dental
prophylaxis, he or she would be “afraid or extremely afraid” (68% vs. 36%; p<.0001),
72
and that their child's anxiety or response to dental treatment discouraged regular dental
check-ups (36% vs. 4%; p<.0001). See Table 3.3.
These findings were also supported by the qualitative data obtained from the
survey. Of parents who responded to the open-ended question regarding oral care at
the dental office, almost all reported that dental care was anxiety-provoking, a negative
experience, or difficult to complete. A number of parents reported that they hadn’t
returned to the dentist since the child’s last visit due to their child’s negative responses,
fear, or anxiety; additionally, one parent wrote that “just mentioning the word dentist to
our daughter sets off tears.” Twenty-two percent of parents who included narrative
comments reported that sensory difficulties with “unfamiliar smells”, “lights, sounds”,
“textures”, “leaning back”, and “letting people touch his mouth” impeded treatment by
causing uncooperative behaviors, anxiety, panic, or an increase in self-stimulation
behaviors. Uncooperative behaviors were also present in approximately a quarter of the
children, as one parent reported that her child “yells, curls up on side, and trembles”,
while another reported that “my son can become very aggressive and difficult for the
nurses and dentist to handle.” Multiple parents noted that their child cries or screams
prior to and during the dental appointment, with one parent stating that “I have to sit in
the waiting room and listen to him scream. It makes me very stressed and I can only
imagine how stressful it is for him.” Additionally, multiple parents reported using restraint
during routine dental cleanings, with one stating that it takes “3 adults to hold him in the
exam chair” and another parent reporting that
I had to restrain my daughter to the point that her face was red and she was
crying. I had to hold both her arms down and use both of my legs to hold her legs
73
down just to have the assistant put the plastic piece NEAR her mouth. It never
made it in. so that was the end of the exam. Just go home.
Parents also reported that it took more time for them to prepare their child at
home prior to the dental visit, and that the dental cleaning itself required more time as
well. For instance, parents report that at home they have to “coach” and “prepare
[children] with lots of pictures and talking ahead of time” and sometimes even “bringing
his therapist with” to the dental appointment. However, this extra preparation is not
always successful, as one parent reported that “no matter how much we prepare for the
visit and talk about the things that will happen, he gets resistant once he is in the chair
and the dentist wants to get into his mouth.” Additionally, once the child is at the
appointment, parents noted that the “clinician must explain services before, demo or
model, and give breaks – not all clinicians who work with kids spend this kind of time”;
they also stated that it is important to find dentists who “understand and do not get
bothered by the extra effort required.”
74
Table 3.3
Dental Office Oral Care Variables by Group (Typical vs. ASD)
ASD Group TD Group
ASD vs. TD
Group
n*
Count
(yes)
%
(yes) n*
Count
(yes)
%
(yes) X
2
P-value
Moderately-extremely difficult to
have a dental professional clean
child's teeth
191 114 60
191 25 13
87.58 <.0001
Last experience at dental office
was negative
168 64 38
188 7 4
63.51 <.0001
Child is afraid of, dislikes, or
complains about 3+ sensory
characteristics of dental office
196 102 52
202 13 6
98.49 <.0001
Child would be afraid or
extremely afraid if had to get
teeth cleaned tomorrow
194 131 68
200 71 36
39.16 <.0001
Uncooperative behaviors
increase at dentist
194 95 49
202 9 4
98.97 <.0001
Sensory sensitivities increase at
dentist
194 92 47
202 13 6
83.23 <.0001
Self-stimulatory behaviors
increase at dentist
194 55 28
202 0 0
64.16 <.0001
Use of restrain often or almost
always
191 35 18
193 2 1
31 <.0001
Child has ever required general
anesthesia, sedation or other
drugs for routine cleaning
191 70 37
199 9 5
60.3 <.0001
Child's anxiety or response to
dental cleanings discourages
regular dental check-ups
194 69 36 194 8 4 58.33 <.0001
Note. Differences between Typical and ASD groups are tested with Chi-Square test.
*n varies between different variables according to missing data
Access to Oral Care
Contrary to our expectations, there was not a significant difference between the
number of times parents took their child to have dental prophylaxis in the last 12 months
based on group status (p=.33), although only approximately 55% of children in both
75
groups had prophylaxis two or more times in the prior year (the most common interval of
examination, although some patients require more frequent examination and preventive
services based on risk assessment; AAPD, 11-12c). However, significantly more
parents of children with ASD reported more difficulty in locating a dentist willing to
provide their child with care than parents of typical children (p<.0001), and 37% of
parents in the ASD Group stated that it was more difficult to find and access dental
services for their child with ASD than for their child’s typically developing sibling(s).
Additionally, almost a quarter of parents of children with ASD reported ever being
refused treatment by a dental provider (n=47), significantly more than the 3% (n=7) of
parents of typically developing children (p<.0001). According to the parents, the most
frequent reasons given by the dentist for refusal of services to their children with ASD
were: inadequate dental training for working with children with special health care needs
(31.8%) and their child’s behavior problems (25.9%). See Table 3.4.
These findings were also supported by the qualitative data obtained from the
survey. Of parents who responded to the open-ended survey question regarding oral
care at the dental office, almost 10% additionally reported that it was difficult to find
dentists who were educated about working with children with autism. One parent
reported that some “dentists…don’t believe what we said about our child’s difficulties
and then act like we are to blame for bringing the child to them…the dentist and staff
can become vocally angry and unprofessional about the situation.” Another parent wrote
that the dentist provided her daughter with directions that made her (the mother) “sit
there and laugh. After [her] daughter screamed and kicked in the assistant’s direction I
informed her that a child with autism would not typically be able to follow all of those
76
directions, much less do it.” Lastly, another parent emphasized the dental professionals’
lack of knowledge regarding children with ASD when she wrote that “I guess they are
hoping she will outgrow her behaviors and they can do it [the cleaning] next time. That
just goes to show they have no idea.”
Table 3.4
Access to Oral Care Variables by Group (Typical vs. ASD)
ASD Group TD Group
ASD vs. TD
Group
n*
Count
(yes)
%
(yes) n*
Count
(yes)
%
(yes) X
2
P-
value
Two or more visits to dentist for
cleaning in past 12 months
196 109 56
202 119 59
0.32 0.33
Difficult locating a dentist willing
to clean child's teeth
191 72 38
197 8 4
64.99 <.0001
Child has ever been refused
treatment by a dental provider
196 47 24
202 7 3
33.97 <.0001
Note. Differences between Typical and ASD groups are tested with Chi-Square test.
*n varies between different variables according to missing data
Multivariate Results
Multivariate logistic regression was completed for all above oral care variables, to
control for possible cofounders, including: age, gender, Hispanic status and paternal
education status. All previously significant variables remained significant (all p’s
<.0001). Additionally, the difference between the number of children receiving dental
prophylaxis two times per year (the most common interval of examination, although
some patients require more frequent examination and preventive services based on risk
assessment; AAPD, 11-12c), previously not significant between groups, approached
significance following controlling for the aforementioned variables. This indicates that
fewer children in the ASD Group visited the dentist for the recommended number of
77
prophylaxis appointments per year (p=.056). See Table 3.5 for further details.
Table 3.5
Multivariate Regression Results for all Oral Care Variables after Adjusting for Age,
Gender, Hispanic Status and Paternal Education Level
Oral Care Variable Odds Ratio
(OR)*
Difficulty with oral care in the home (toothbrushing) 17.8
Number of times teeth brushed per week 0.9†
Required “some or complete” physical assistance with toothbrushing 2.5
Experience during last cleaning was “negative” 21.1
Moderately-extremely difficult to have dental professional 15.0
clean your child’s teeth
Child is afraid of, dislikes, or complains about:
Dentist Drill 3.2
Bright Lights 7.6
Loud Sounds 11.5
Having someone put instruments in his/her mouth 12.1
Leaning back in dentist’s chair 29.2
Smells 9.4
None 0.08†
Uncooperative behaviors increase at the dentist 31.1
Sensory sensitivities increase at the dentist 16.3
Dental practitioner has ever used restraint to clean your child’s teeth 18.1
Child has ever required routine dental cleaning under general 9.2
anesthesia, sedation, or other drugs
If your child had to go to the dentist tomorrow, he/she would feel 7.8
a little uneasy, afraid, or extremely afraid
Your child’s anxiety or response to dental cleanings discourages 16.1
you from having your child receive regular dental check-ups
Ever experienced moderate-extreme difficulty locating a dentist 16.3
willing to provide your child with care
Ever been refused treatment by a dental provider 10.8
Number of times child has been to the dentist for teeth cleaning 0.7†
in last 12 months
* To be read: After adjusting for age, gender, Hispanic status and paternal education level,
you are (OR) times more likely to have ASD if reported 'yes' on (oral care variable) than if
reported ‘no’ on (oral care variable)
† An OR less than 1 is considered to be “protective” in that you are less likely have (in this
case) ASD following a ‘yes’ response on the oral care variable being investigated as
compared to a ‘no’ response.
78
Discussion
As expected, parents reported that oral care was challenging for children with
ASD. The results of this study indicate that children with ASD, in comparison to typically
developing children, demonstrate greater difficulty with oral care in the home, in the
dental office, as well as accessing dental care.
The physical and behavioral characteristics of ASD have the ability to impact
daily functioning in children with ASD (Williams, 2009). In this study, almost two-thirds of
parents of children with ASD reported difficulty with their child’s daily oral care. This is
consistent with prior literature reporting toothbrushing to be challenging for 48% to 73%
of parents of children with ASD (Marshall et al., 2010; Stein et al., 2011). In addition,
significantly more children in the ASD group required “some or complete” physical
assistance than typical children, despite their older age. The need for physical
assistance may be due to a number of reasons including motor coordination difficulties
impacting the ability to manipulate the toothbrush, uncooperative behavior, and sensory
sensitivities often experienced by children with ASD. For the parents in this study, their
child's dislike of the sensory characteristics of the experience (e.g., taste/texture of the
toothpaste and feeling of the toothbrush in the mouth) was reported significantly more
often in the ASD group than typical group. This difference has also been found when
comparing children with ASD to children with other disabilities (Stein et al., 2011), and
may play a role in the frequency or adequacy of toothbrushing.
Almost two-thirds of parents of children with ASD also reported that it was
moderately to extremely difficult for their child to have his or her teeth cleaned at the
dental office, and almost half reported that their child’s behavioral difficulties made
79
appointments challenging. As behavioral difficulties in the dental setting are more
common in children with ASD in comparison to typical children and children with other
disabilities (Fahlvik-Planefeldt & Herrstrom, 2011; Loo et al., 2008; Stein et al., 2011;)
non-pharmacological and pharmacological techniques often may be required to treat
this population safely and effectively. Although children with ASD are a heterogeneous
group, the primary symptomatology of ASD may impede use of some traditional basic
and advanced dental strategies. For example, typical behavioral strategies utilizing
communication strategies may be inappropriate for some children in this population due
to children’s impairments with receptive and expressive language; strategies such as
tell-show-do may also have limited effectiveness for those who demonstrate difficulty
with imitation and reciprocity (Marshall et al., 2007; 2008). Although diagnosis of ASD is
one of the most frequent profile traits for utilization of advanced behavioral strategies
such as general anesthesia (Hulland & Sigal, 2000), which has been reported to be
utilized from 18% (Marshall et al., 2008) to 37% (as reported in this study and Loo et al.,
2009), general anesthesia can be dangerous due to adverse drug interactions
(Friedlander et al., 2003; 2006) and its high cost may be prohibitive for un-insured or
under- insured families, which can impact frequency of dental prophylaxis (Marshall et
al., 2008).
Lastly, parents of children with ASD reported significantly more difficulty locating
and accessing dental care practitioners willing and able to treat their children. Past
literature supports this finding, indicating that it is difficult to find dental practitioners
willing to work with populations with special health care needs (Brickhouse et al., 2009;
Glassman et al., 2005; Glassman & Miller, 2009; Nelson et al., 2011). Almost a quarter
80
of parents were, at some time, refused treatment for their child with ASD; however, only
two of these parents indicated that the refusing dentist made a referral to another
practitioner (AAPD, 2011-12g). As dentists indicate that behavior problems, reported to
occur in up to 65% of children with ASD (Marshall et al., 2007), are the greatest barrier
to their willingness to treat children with disabilities (Casamassimo et al., 2004),
accessing dental care may be especially difficult for the ASD population.
This study adds to the understanding of the oral care experiences of children with
ASD. Difficulties reported by parents indicate the need for further education for both
parents of children with ASD as well as for dental practitioners. Families of these
children need information regarding strategies to provide and teach proper oral hygiene
in the home. Dentists also need additional training in providing care for children with
special needs, given that over 30% of parents whose children had been refused
treatment reported that dentists cited inadequate training for working with special needs
children as the reason. This occurred despite requirements by the Committee on Dental
Accreditation of the American Dental Association that predoctoral and advanced
general dentistry programs include both didactic and clinical opportunities to better
prepare dental professionals to care for people with special health care needs (CODA,
2007; 2010).
Several limitations in this study should be noted. Groups were formed on the
basis of parent-report of diagnosis, which was not confirmed by gold-standard
diagnostic tools such as the Autism Diagnostic Interview Revised (Rutter et al., 2003) or
the Autism Diagnostic Observation Schedule (Lord et al., 1999). In addition, significant
differences in age and gender existed between groups. However, the gender
81
differences in the ASD group accurately reflect the distribution of the diagnosis by sex
(CDC, 2011), and findings remained significant following multivariate analyses to control
for age and gender. Additionally, literature indicates an inverse relationship between
age of children with ASD and uncooperative behaviors during oral care (Marshall et al.,
2007); therefore, since the number of children in the ASD group in the older age range
was significantly greater than the typical group, this study may have yielded an even
more conservative estimate of differences between groups. Lastly, due to the non-
experimental, correlational nature of this study, causality of the relationship between
ASD and oral care variables cannot be determined. However, despite these study
limitations, the current findings reveal important information regarding the challenges
and barriers to oral care for children with ASD.
Conclusion
Based on this study’s results, the following conclusions can be made:
1. Children with ASD were significantly more likely to have difficulty with oral care in
the home and a decreased frequency of toothbrushing per week, compared to
typically developing children.
2. More parents of children with ASD, in comparison to parents of typically
developing children, reported that their child experienced difficulty in oral care
and rated their child’s experience in the dental office as negative. Additionally,
more children with ASD demonstrated uncooperative behaviors and sensory
sensitivities in the dental operatory, both of which parents believed made dental
appointments more challenging. Both restraint and pharmacological methods
82
were utilized significantly more often with this population, in comparison to
typically developing children.
3. Significantly more parents of children with ASD reported difficulty in locating a
dentist willing to provide their child with routine care than parents of typical
children. Similarly, significantly more parents of children with ASD had been
refused treatment from a dental practitioner, in comparison to parents of typically
developing children.
83
CHAPTER FOUR: STUDY TWO
Oral Care and Sensory Over-Responsivity in
Children with Autism Spectrum Disorders
Overview
This chapter describes the pertinent literature review, research design and
methodology, and results for the second study of this project. The purpose of this study
was to investigate the relationship between sensory sensitivities and oral care
difficulties. Specifically, we examined the differences in sensory processing between
children with ASD in comparison to typically developing children; associations between
sensory over-responsivity and home and dental-office oral care in children with ASD
were also explored. This study involved the development, dissemination and analysis of
a survey to parents of both typically-developing children and children with ASD in the
southern California area as well as implementation of a focus group of parents of
children with ASD.
Note: This chapter, presented in two different papers, has been published as a
full-length scientific article in Pediatric Dentistry and a Brief Report in the American
Journal of Occupational Therapy. The Pediatric Dentistry manuscript focuses solely on
the quantitative data gathered from the survey (Stein, Polido, & Cermak, 2012b), while
the American Journal of Occupational Therapy manuscript focuses on the sensory
issues noted by parents in the survey and qualitative data obtained from the focus
group (Stein, Polido, & Cermak, 2013).
84
Literature Review
Sensory processing difficulties occur when sensory information is processed and
perceived by the brain atypically, such that responses to differing types of sensory
stimuli are not graded appropriately, leading to over- or under- reactions to stimulation
(Baranek et al., 2006; 2007). Sensory processing difficulties include a wide array of
responses, including sensory over-responsiveness (defensiveness) and sensory under-
responsiveness (Miller et al., 2007c; Tomchek, 2010), and can occur across all sensory
domains (e.g., tactile, auditory, visual; Harrison & Hare, 2004). These difficulties can
lead to atypical reactions to sensory stimuli (Gavin et al., 2011; McIntosh et al., 1999;
Reynolds & Lane, 2008b; Schoen et al., 2008b; Tomchek, 2010).
Sensory processing difficulties have been found in various populations, including
children with: developmental delay (Baranek et al., 2007), attention deficit/hyperactivity
disorder (Ghanizadeh, 2008), Fragile X Syndrome (Baranek et al., 2008), Fetal Alcohol
Spectrum Disorder (Wengel et al., 2011), and children who have experienced prolonged
institutional care (Cermak & Groza, 1998; Lin et al., 2005; Wilbarger et al., 2010). A
population with a high prevalence of sensory processing difficulties is individuals with
autism spectrum disorder (ASD). Autism spectrum disorders are characterized by
impaired social interaction, abnormalities in communication, restricted interests, and
repetitive and obsessive behaviors (APA, 2000). The presence of sensory differences
are being considered for inclusion in the new DSM5 diagnostic criteria (Lord & Bishop,
2010), as reports indicate that between 69% and 95% of children with ASD exhibit some
form of sensory processing difficulties (Baker et al., 2008; Baranek et al., 2006; Ben-
Sasson et al., 2009b; Tomchek & Dunn, 2007).
85
As sensory integration is a very complex phenomenon and people with ASD are
heterogenic in their responses to sensory stimuli, research investigating isolated regions
in the brain causing sensory processing difficulties is just beginning (Marco et al., 2011).
However, preliminary research has implicated areas such as the prefrontal cortex,
temporal lobe, and cerebellum as well as connectivity disturbances between cortical
and subcortical areas (Marco et al., 2011). The differences in processing sensory
information in people with ASD can be detected both physiologically and behaviorally
(Marco et al., 2011; Reynolds & Lane, 2008; Schoen et al., 2008b; Tomchek, 2010).
Physiological differences in children with ASD have been found using measures of
electrodermal activity (EDA; Reynolds & Lane, 2008; Schoen et al., 2008b),
electroencephalography (EEG; Marco et al., 2011; Reynolds & Lane, 2008),
magnetoencephalography (MEG; Marco et al., 2011), and functional MRI (Marco et al.,
2011). Behavioral differences have also been observed in children with sensory
processing disruptions. For instance, when a child who is over-sensitive to sensory
stimuli is exposed to stimulation, behavioral differences such as fight, fright or flight
reactions can occur, including physical withdrawal, vocal outbursts, aggressive
behaviors, tantrums, and/or attempts to block the stimuli (Ayres, 1964; Marco et al.,
2011; Miller-Kuhaneck, 2008; Souders et al., 2002; Tomchek, 2010). These difficulties
have the ability to impede participation in a variety of activities as well as the day to day
functioning of individuals (Koenig & Rudney, 2010; Williams, 2009), and have been
shown to be negatively correlated with measures of adaptive behavior (Baker et al.,
2008).
86
One example of sensory processing difficulties negatively impacting functional
activities is that of oral care. A number of studies in the dental literature make note of
the sensory difficulties experienced by children with ASD and the possible impact they
can have on oral care (Friedlander et al., 2003; Green & Flanagan, 2008; Lyons, 2009;
Marshall et al., 2008; NIDCR, 2004; Stein et al., 2011; Stein et al., 2012a, Waldman et
al., 2008). However, these studies rarely focus empirically on the relationship between
sensory processing difficulties and oral care difficulties or intervention for these
problems, concentrating instead on topics such as the behavioral strategies utilized for
treatment of children with ASD in the dental office. One empirical study has identified
the existence of a relationship between sensory sensitivities and oral care difficulties in
the home and dental office (Stein et al., 2011). This study found that although many
children with ASD experience difficulty with oral care, significantly more children with
ASD and sensory sensitivities experience oral care challenges, relative to children with
ASD who do not show sensory sensitivities (Stein et al., 2011).
As the incidence of ASD has increased substantially in the past decade, with
current statistics citing the prevalence of ASD in the United States to be approximately 1
in 110 children (CDC, 2011), more dentists will encounter children with ASD in their
practice. It is therefore of utmost importance to understand the relationship between
sensory sensitivities and oral care in order to provide appropriate and effective dental
care to this population.
The purpose of this study was to investigate the relationship between sensory
sensitivities and oral care difficulties. Specifically, we examined the differences between
Sensory Over-Responders and Sensory Not Over-Responders in relation to difficulty
87
with oral care, both in the home and dental office environments. Using parental
questionnaire data and qualitative data from a focus group, we examined two
hypotheses: (1) children with a diagnosis of ASD, as compared to their typically
developing counterparts, will show a significantly greater prevalence of sensory over-
responsivity across all sensory domains, and (2) children with ASD categorized as
“Sensory Over-Responders” will exhibit a significantly greater prevalence of oral care
difficulty in the home and at the dental office, in comparison to children with ASD who
responded more typically to sensory stimuli (“Sensory Not Over-Responders”).
Methodology
This study was approved for human subjects by the Institutional Review Board of the
University of Southern California Health Sciences (HS-09-00597 and HS-09-00691; see
Appendices B and C for IRB approval letters).
Design
The research design consisted of a correlational assessment of the relationship
between autism diagnosis, sensory processing difficulties, and oral care problems. Data
were based on parental responses to a survey created to examine oral care in the home
and dental office (the “Dental Care in Children” Survey; a copy may be requested from
the author). The survey was disseminated in paper format to various school districts in
southern California to recruit parents of both typical children and those with ASD.
Parents of children with ASD were also recruited from the southern California area with
the assistance of the Interactive Autism Network (IAN) Research Database at the
Kennedy Krieger Institute and Johns Hopkins Medicine – Baltimore, sponsored by the
88
Autism Speaks Foundation via an online survey, and from Children’s Hospital of Los
Angeles.
One focus group was conducted in order to obtain qualitative data regarding the
relationship between sensory processing difficulties and oral care problems. The five
focus group subjects constituted a convenience sample obtained from parents of
children with ASD who completed the “Dental Care in Children” Survey and indicated
that they would be willing to participate in a focus group.
Participants
Participants were parents of typically developing children (Typical group; n=202)
or children with ASD (ASD group n=196: Autism, n=131; Asperger’s Syndrome, n=22;
Pervasive Development Disorder – Not Otherwise Specified, n=20; being considered for
an ASD diagnosis, n=5; or more than one of the above, n=18) who were between two
and 18 years of age. Children were excluded from both groups if they did not meet the
age criteria, had a diagnosis of cerebral palsy or other neuromuscular disorder, or their
parents had not completed 90 percent or more of the survey. Following removal of 48
surveys based on these exclusion criteria, responses from 398 surveys were included in
the analysis (n=202 Typical, n=196 ASD).
Categorization of Sensory Over-Responders and Not Over-Responders
In order to dichotomize children as Sensory Over-Responders or Sensory Not
Over-Responders, parents were asked to rate their child from 1 (not oversensitive) to 3
(moderately oversensitive) to 5 (very oversensitive) on each of eight modalities of
sensory stimuli on a five-point Likert scale. Sensory modalities presented to the parents
included the words: touch, oral (mouth), taste, smell, sound, vibration, movement, and
89
light. Fourteen additional surveys were excluded as parents did not complete these
questions regarding their child’s sensitivity to different modalities of sensory stimuli.
Following removal of these surveys, responses from 182 surveys were included in
analyses.
In the Typical group, only 15 percent of children were reported to be moderately-
to-extremely oversensitive to three or more of the eight sensory modalities, with 85
percent reported to be oversensitive to two or fewer of the modalities. Utilizing this
information (selected because 15 percent typically represents one standard deviation
from the mean), we created a cut score to separate what we termed "Sensory Over-
Responders" (SORs) from "Sensory Not Over-Responders" (SNORs; i.e.: not
oversensitive to sensory stimuli). SNORs included any children (either ASD or Typical)
whose parents reported moderate-to-extreme oversensitivity on two or fewer of the
eight sensory modalities, while SORs were those whose parents reported moderate-to-
extreme oversensitivity to three or more of the eight sensory modalities.
Participants of the focus group were five mothers of children with ASD. Mothers
had either earned a graduate degree or above (40%) or had attended some college, but
had not earned a degree (60%). All participants’ children were sons between 6 and 18
years of age with a diagnosis of autism/ASD. Four of the children were able to
communicate using sentences, while one child only used single words or phrases. All
children were described by their mothers as White or Caucasian (100%) and either not
Hispanic/Latino (40%) or Hispanic/Latino (60%).
90
Instruments
The “Dental Care in Children” Survey is a 37-item questionnaire designed to elicit
information from parents regarding their child’s experiences with oral care in the home
and dental office (see Appendix A). The survey included dichotomous yes/no answers,
Likert-scale based questions, as well as fill-in-the blank questions to obtain qualitative
data. Demographic information was also obtained, including: child’s gender, age group
in which their child fell (2.1-4.11, 5.0-7.11, 8.0-10.11, 11.0-13.11, or 14.0-18.0), method
of communication, race, ethnicity, and parental education level.
The “Dental Care in Children” Survey included questions about: oral care in the
home, experiences during routine dental prophylaxis, sensory challenges, behavioral
challenges, and the use of restraint and pharmacological methods during routine
prophylaxis. More specifically, questions about oral care in the home included items
about difficulty toothbrushing, dislike of the taste or texture of toothpaste, dislike of the
feeling of the toothbrush in child’s mouth, gagging during toothbrushing, frequency of
toothbrushing, and level of assistance required during toothbrushing (vs. independence
during toothbrushing). Experiences of children during routine dental prophylaxis were
obtained via questions asking parents to rate the child’s last cleaning experience at the
dentist (five point scale of bad to pleasant), difficulty having a dentist or hygienist clean
child’s teeth (five point scale of not at all difficult to extremely difficult), and how their
child would feel if he/she had to go to the dentist tomorrow to receive a teeth cleaning
(five point scale of extremely afraid to look forward to it as a reasonably enjoyable
experience). Information about sensory challenges were elicited by asking parents if
their child was afraid of, disliked, or complained about sensory stimuli (e.g., bright lights,
91
loud sounds, instruments in mouth, leaning back in the dental chair, smells), asking if
the child’s sensory sensitivities increased while at the dentist, and asking if they
believed that these sensory sensitivities made dental appointments challenging.
Behavioral challenges were assessed by asking if uncooperative behaviors increased at
the dentist and if these behavioral difficulties (i.e.: refusing to open mouth, screaming,
not cooperating, etc) made dental visits challenging.
In order to obtain more in-depth and qualitative data on oral care in children with
ASD a three-hour semi-structured focus group was conducted with mothers of children
with ASD. The focus group was facilitated by the use of several open-ended questions
about oral care, such as: “Tell me about an experience with your child at the dentist that
stands out in your mind”, “What is hardest for your child at the dentist and why”, “What
are the strategies you/your dentist use at the dental office that are most successful and
why do you think they are”.
Data Analysis
Completed hard-copy surveys were coded by hand and entered into a data
spreadsheet; data were checked twice to ensure for correct data entry. Online surveys
were re-coded, checked twice, and entered into the spreadsheet. Data were then
imported into Statistical Analysis Software (SAS) version 9.2 for analysis (SAS v.9.2.,
SAS Institute, Inc., Cary, NC, USA). For descriptive purposes, frequencies and
percentages were calculated for diagnostic categories as well as each of the oral care
variables. Fisher’s Exact Probability tests and Chi-Square tests were performed to test
for associations between groups (ASD vs. Typical and Not Over-Responders vs. Over-
Responders) and the dichotomous oral care variables and demographics variables. For
92
multivariate analyses, logistic regression was used to determine the associations
between groups and the dichotomous oral care variables after controlling for possible
confounding variables. Two-tailed statistical tests were used to provide a more
conservative estimate of group status on oral care variables. All tests were conducted at
the .05 significance level.
Data from the focus group was audio-recorded, transcribed, and then used to
examine consistency or contradiction with survey results. Parent comments from the
focus group are reported to illustrate findings. Formal qualitative analyses were not
conducted.
Results
Between-Group Analyses: Typical vs. ASD
Age significantly differed between ASD and Typical groups, with more children
with ASD reported to be in the older age ranges (p<.0001). Likewise, there was a
significant difference in gender between the ASD and Typical groups (p<.0001); the
ASD group contained significantly more males (n=157) than females (n=36), while the
Typical group had an approximately equal distribution of males (n=109) to females
(n=90). These are consistent with national statistics (CDC, 2011), and therefore
represent an accurate sampling of the population. As expected, groups were also
significantly different in regards to communication level (ASD lower), but did not differ in
regards to race or maternal education level; Hispanic status was also significantly
different between groups with more parents in the Typical group reporting their child to
be Hispanic or Latino (see Stein et al., in 2012a for more information regarding
between-group demographic data).
93
Sensory Sensitivity by Group. Children with a diagnosis of ASD showed a
greater prevalence and magnitude of sensory over-responsivity to a variety of sensory
modalities encountered in daily life (touch, oral (mouth), taste, smell, sound, vibration,
movement, and light), as compared to typically developing children. Fifty percent or
more of parents of the ASD group reported moderate-to-extreme oversensitivity to each
sensory modality (touch, oral stimuli, taste, smell, sound, vibration, movement and
light), significantly more than the Typical group (all p's<.0001). Sound, taste and oral
sensitivities were most frequently reported by both parents of children with ASD (82.5%,
75.0% and 68.9%, respectively) and typical children (22.1%, 21.1% and 17.6%,
respectively). Similarly, significantly more parents reported that their child with ASD
disliked, was afraid of, or complained about oral care-related sensory variables (e.g.,
dentist drilling, bright lights, loud sounds, having someone put instruments in his or her
mouth, leaning back in the dentist's chair, and smells), in comparison to parents of
typical children (p<.0001 for all variables).
Following application of the cut-score created by the parent-reported over-
responsivity to sensory stimuli in the Typical group, a significant difference was found
between the number of typically developing children and children with ASD who met the
criteria to be labeled SORs (15% vs. 79%; p<.0001; SNOR = moderate-to-extreme
oversensitivity on two or fewer of the eight sensory modalities vs. SOR = moderate-to-
extreme oversensitivity to three or more of the eight sensory modalities). Within both the
ASD group and the Typical group, no significant differences in the proportion of children
in both SOR and SNOR groups existed in regards to either age (<11 vs. ≥11 years old;
p’s = .87, .21 respectively) or gender (male vs. female; p’s = .44, .79 respectively).
94
Table 4.1
Sensory Sensitivity by Group (ASD vs. Typical)
ASD Group TD Group ASD vs. TD Group
n*
Count
(yes)
%
(yes)
n*
Count
(yes)
%
(yes)
X
2
P-value
Moderate-extreme oversensitivity to:
Touch 193 105 54
200 29 15
67.84 <.0001
Oral 193 133 69
199 35 18
103.3 <.0001
Taste 192 144 75
199 42 21
11.65 <.0001
Smell 192 106 55
200 32 16
64.31 <.0001
Sound 194 160 82
199 44 22
141 <.0001
Vibration 193 106 55
200 28 14
71.39 <.0001
Movement 191 97 51
199 27 14
60.55 <.0001
Light 194 98 51 196 25 13 62.65 <.0001
Note. Differences between Typical and ASD groups are tested with Chi-Square test.
*n varies between different variables according to missing data
ASD Within-Group Analyses: Sensory Over-Responders vs. Sensory Not
Over-Responders
Within the ASD group, we examined differences in oral care between children
with and without SOR. Data were analyzed from 182 questionnaires completed by
parents of children with ASD. Participating parents/guardians were mothers (91%),
fathers (8%), and non-parent guardians (1%). Significantly more males (n=147) than
females (n=34) were represented in the study, consistent with national statistics (CDC,
2011). Age, gender distribution, race, Hispanic status, maternal education status, and
communication abilities did not differ between SORs and SNORs in the ASD group. See
Table 4.2 for frequencies of demographic information. Additionally, only 1.5% of parents
of children with ASD reported that their child experienced oral (mouth) oversensitivity
while other senses remained uninvolved.
95
Table 4.2
Descriptive Characteristics of ASD Respondents
Demographic Characteristics
Not Over-
Responders
(SNORs)
(n=38)
N (%)
Over-
Responders
(SORs)
(n=144)
N (%)
Gender
p = .23
Male 33 (86.8) 114 (79.7)
Female 5 (13.2) 29 (20.3)
Age
p = .78
2.0-4.11 7 (18.9) 17 (12.0)
5.0-7.11 11 (29.7) 38 (26.8)
8.0-10.11 8 (21.6) 41 (28.9)
11.0-13.11 7 (18.9) 29 (20.4)
14.0-18.0 4 (10.8) 17 (12.0)
Race
p = .25
White, Caucasian 25 (67.6) 109 (80.1)
Asian 3 (8.1) 8 (5.9)
Black or African American 2 (5.4) 6 (4.4)
American Indian/Alaska Native or 0 (0.0) 2 (1.5)
Native Hawaiian or other Pacific
Islander
More than one of the above 7 (18.9) 11 (8.1)
Hispanic Status
p = .87
Not Hispanic, not Latino 26 (70.3) 101 (71.6)
Hispanic, Latino 11 (29.7) 40 (28.4)
Maternal Education Level
p = .79
High School or GED 6 (16.7) 27 (19.3)
College 16 (44.4) 67 (47.9)
Graduate Degree or above 14 (38.9) 46 (32.9)
Communication (My child is able to indicate his/her needs or wants using: _________) p = .36
Sentences 27 (71.1) 96 (66.7)
Single words or phrases 6 (15.8) 30 (20.8)
Gestures 3 (7.9) 4(7.9)
My child is unable to communicate/
screaming
2 (5.3) 14 (9.7)
and/or yelling
Note. Counts may not sum to total group N values due to unreported data.
96
Oral Care at Home. Oral care in the home was reported to be challenging by
significantly more parents of SOR children with ASD, in comparison with SNORs. For
instance, 65% of parents of children in the SOR group reported difficulty with their
child’s oral care (toothbrushing) on a daily basis, as compared to only 47% of parents of
children in the SNOR group (p=.04). Likewise, significantly more parents of children in
the SOR group reported that their child disliked the taste or texture of the toothpaste in
their mouth and that their child exhibited gagging during toothbrushing (p’s = .002, .006,
respectively); however, there was not a significant difference between sensory
responsivity groups in regard to parent report of the child disliking the feeling of a
toothbrush in his/her mouth (p=.07).
Surprisingly, there was not a significant difference between ASD SORs and
SNORs in regards to parent reported frequency of toothbrushing or level of assistance
required for toothbrushing (p’s = .95, .20, respectively). See Table 4.3.
Sensory findings were also supported by parents in the focus group. All mothers
in the focus group reported difficulty with toothbrushing in the home, with one stating
…I had to brush his teeth for the first nine years of his life and every single time it
was a battle. Every night. And we only brushed teeth once a day and that's all I
could handle. And yeah, it was never not a battle. When he was little we had to
force him down and open his mouth and brush his teeth…everything, every
single step along the way is a battle.
The focus group participants also described challenges with home-related sensory
variables, with one mother stating that "he doesn't like toothpaste. We've tried organic,
we've tried home-made, we've tried everything from Dora to whatever…the toothpaste, I
97
think, is the biggest challenge". Intraoral sensitivity was also mentioned, with one
mother noting that "it's hard to get a toothbrush in his mouth, and when we do…he will
only let us brush the side, like the outer sides, but you can't do the inner sides. So
anything that would include touching his tongue or that inside area is nearly impossible
to do".
Table 4.3
Home Oral Care Variables by Sensory Responsivity in Children with ASD (SOR vs. SNOR)
Sensory Over-
Responders
(SORs)
Sensory Not Over-
Responders
(SNORs)
SOR
vs.
SNOR
n*
Count
(yes)
%
(yes)
n*
Count
(yes)
%
(yes)
P-
value
Difficulty with toothbrushing on
a daily basis
182 93 65
38 18 47
0.04
Dislike of taste and/or texture
of toothpaste
135 55 41
35 5 14
0.002
Dislike of feeling of toothbrush
in mouth
135 54 40
35 10 29
0.07
Child gags during
toothbrushing
135 21 16
35 0 0
0.006
Child requires some or
complete physical assistance
with toothbrushing
144 78 54
38 17 45
0.2
Note. Differences between SOR and SNOR groups are tested with Fisher’s Exact test.
*n varies between different variables according to missing data
Oral Care at the Dentist. When inquiring about experiences with the dentist,
significantly more parents of children in the SOR group reported that it was moderately-
to-extremely difficult to have the dentist or hygienist clean their child’s teeth, in
comparison to parents of children in the SNOR group (65% vs. 39%, p=.004). Similarly,
more parents of children in the SOR group, in comparison to the SNOR group, reported
98
that their child’s last experience at the dentist’s office was negative (38% vs. 22%,
p<.05). Forty-one percent of parents of children in the SOR group also reported that if
their child had to go to the dentist tomorrow for dental prophylaxis he/she would be
afraid or extremely afraid, while only 26% of parents of children in the SNOR group
believed their child would feel similarly (p=.08).
Significantly more parents of Over-Responders, in comparison to Not Over-
Responders, reported that their child’s sensory sensitivities increased in the dental
office (56% vs. 26%, p=.001) and that those sensory sensitivities (e.g., difficulty with
bright lights, loud waiting room/instruments for prophylaxis, managing new tactile/taste
sensations) made dental appointments challenging (73% vs. 42%, p=.0005).
Specifically, more parents of Over-Responders reported that their child was afraid of,
disliked, or complained about the lights (44%) and sounds (59%) in the dental office and
the feeling of the instruments within the child’s mouth (73%), in comparison to parents
of children in the SNOR group (13%, 34%, 61%; p’s= .0005, .006, .10, respectively).
More parents of children in the SOR group also reported that their child’s
uncooperative behaviors (e.g., refusing to open mouth, screaming, not complying with
dentist/parent’s requests) increased at the dental office in comparison to parents of
children in the SNOR group (52% vs. 34%, p=.04), with 65% of parents of Over-
Responders also reporting that these behavioral difficulties make dental appointments
challenging, as compared to only 44% of parents in the SNOR group (p=.02). Use of
restraint “often” or “almost always” for routine prophylaxis was utilized significantly more
for SORs, in comparison to SNORs (38% vs. 18%, p=.02). Additionally, although not
significantly different between the two groups, more parents of Over-Responders
99
reported that their child had ever required general anesthesia, sedation, or other drugs
for routine dental prophylaxis in comparison to parents of SNOR children (38% vs. 26%,
p=.12). Of those Over-Responders requiring pharmacological intervention, parents cited
behavior difficulties (38%), extreme anxiety (65%) and an inability to cooperate with the
dentist (78%) as the reasons why these procedures were necessary. See Table 4.4.
These findings were also supported by parents in the focus group. All mothers
noted that it was quite difficult for a dentist to clean their child’s teeth. When asked how
a regular cleaning is for her child, one mother responded “Horrible. Every dental visit
that we have had has been negative. It has never been a positive experience for him, so
now he equivocates [sic] dental visits with just ugliness”. Parents also mentioned
difficulty with the sensory-related variables at the dental office. In fact, in response to
one mother suggesting a child use sunglasses or a hat to block the light, another
responded that her son “doesn’t like bright light [or things on his head/face]; so it’s like,
pick your poison”. Another mother suggested that dentists should
…make equipment that’s less noisy. I mean, I think that would be good for
everyone, not just autistic kids, because that zzzzzz noise… I know my son hates
that noise, so I'm just wondering if equipment-wise there is anything else that
could make it less.
Of the three parents who reported using sensory strategies (e.g., adjusting lights,
providing deep pressure or oral vibration, playing music) during dental cleanings, all
believed that the sensory strategies were more effective than other non-sensory
techniques utilized during dental cleanings. Additionally, all five parents believed that
sensory strategies they had not previously attempted would be helpful in the future.
100
Four of the mothers in the focus group reported that their sons had required
restraint during routine oral cleanings, with either the use of a papoose board or multiple
people restraining their child. However, although all mothers expressed that they would
prefer for people (parents, dentists, hygienists, etc) to restrain their child as compared to
using a papoose board, one mother stated that in the past “I had to hold our son, but
now my husband had to hold him because he is so tall and I can’t hold him
anymore…[we do this by] sit[ing] in the chair and he would lay in my lap and we would
literally put our legs over [his] legs”, drawing attention to the question of how to safely
and effectively restrain children as they grow.
The mothers in the focus group had a very positive opinion of the use of
pharmacological methods during oral care, with three participants stating they had
utilized this type of intervention for their sons. One mother said “Go Drugs!”, and
another commented that “basically, just as soon as there is any significant problem it’s
off to the nitrous oxide room”, while another mother spoke of her experience with
general anesthesia
When he’s out, he’s out, it’s like he doesn’t have to fight through it, he doesn’t
have to be aware of what’s going on. It’s been easier so if that’s the way it’s
going to work for a dental visit, I’m not a proponent of general anesthesia, it’s
scary, I know it carries risks, but I don’t care, it’s just so much easier because
we’ve gone through really traumatic experiences at the dentist.
Two mothers even discussed medicating their children with Sudafed or Benadryl in
order to calm their sons to make them “go to sleep because he’s taking a decongestant”
before treatment. However, use of pharmacologic methods do not always work as
101
planned (Friedlander et al., 2006; NIDCR, 2004), as a mother explained that “apparently
there are certain medications that tend to calm people…and some people have the
reverse effect”. Another told of her negative experience, when she and her husband
…had a long conversation with the dentist and we didn’t want to do general
anesthesia at that point because she [the dentist] wanted to do the least intense
one and so you know, um, we went with nitrous oxide which was not good. He
does not respond well to nitrous oxide, in fact it makes him aggressive. He was
screaming, he was kicking, despite having a lot of nitrous oxide in addition to that
little medicine before, it just did not work. He was fully alert throughout the whole
thing…They had like this window, they allowed us to see and my husband was
going to go in there and beat somebody up it was that bad. Cause it looked like
they were torturing him, so it was tough on him and it was really tough on us, you
know, um, we thought that it was going to be our only approach.
102
Table 4.4
Dental Office Oral Care Variables by Sensory Responsivity in Children with ASD (SOR vs. SNOR)
Sensory Over-
Responders
(SORs)
Sensory Not Over-
Responders
(SNORs)
SOR vs.
SNOR
n*
Count
(yes)
%
(yes)
n*
Count
(yes)
%
(yes)
P-value
Moderately-extremely difficult
to have dental professional
clean child's teeth
141 92 65
38 15 39
0.004
Last experience at dental
office was negative
137 52 38
37 8 22
0.05
Uncooperative behaviors
increase at dentist
142 74 52
38 13 34
0.04
Uncooperative behaviors
make prophylaxis challenging
136 88 65
38 16 44
0.02
Sensory sensitivities increase
at dentist
142 79 56
38 10 26
0.001
Child's sensory sensitivities
make prophylaxis challenging
135 99 73
36 15 42
0.0005
Self-stimulatory behaviors
increase at dentist
142 47 33
38 8 21
0.11
Use of restraint often or
almost always
141 53 38
38 7 18
0.02
Child has ever required
general anesthesia, sedation
or other drugs for routine
cleaning
141 54 38
38 10 26
0.12
Difficulty locating dentist
willing to clean child's teeth
142 60 42
37 8 22
0.02
Child ever refused dental
treatment
144 37 26
38 6 16
0.14
Note. Differences between SOR and SNOR groups are tested with Fisher’s Exact test.
*n varies between different variables according to missing data
103
Discussion
As hypothesized, more parents of children with ASD reported that their child
experienced difficulty processing sensory stimuli in comparison to parents of typically
developing children. This is consistent with a recent meta-analysis that examined
sensory processing in children with ASD (Ben-Sasson et al., 2009b). The results of the
current study also indicated that of those children with ASD, those reported to
demonstrate over-responsivity to sensory stimuli in three or more modalities (Sensory
Over-Responders), as compared to those reported to experience difficulty with two or
less sensory modalities (Sensory Not Over-Responders), demonstrated greater difficulty
with oral care in the home and in the dental office. This provides further support for the
impact of sensory processing problems on functional activities such as oral care.
Results also indicate a relationship between sensory processing difficulties and
parent report of increased uncooperative behaviors in the dental office, which can
create obstacles for the dental practitioner as well as impact a child’s ability to have a
successful dental experience. Behavior problems have been reported to be the greatest
barrier to general dentists’ willingness to work with children with disabilities
(Casamassimo et al., 2004).
Currently, a number of behavior guidance techniques are utilized to facilitate
effective dental treatment for children with disabilities, including both pharmacological
and non-pharmacological interventions (AAPD, 2011-12a). Many of the basic behavioral
guidance techniques are based on communication (e.g., tell-show-do), an area which
children with ASD often have marked difficulty. Due to impairments with receptive and
expressive language, these behavior guidance strategies may have limited
104
effectiveness for children with ASD, prompting the use of alternative strategies.
“Desensitization” or “orientation” appointments to develop trust and expose a
child to the dental environment prior to undergoing treatment have been suggested for
children with ASD and other developmental or intellectual disabilities (NIDCR, 2004;
Conyers et al., 2004; Grant et al., 2004; Connick et al., 2000; NLMF Foundation, 2011).
However, due to the high prevalence of sensory processing difficulties in the ASD
population and the association between sensory over-responsivity and oral care
difficulties and uncooperative behaviors in the dental clinic, new methods and
procedures to serve children with ASD may include strategies that alter the sensory
characteristics of the dental office or home as well as interventions to reduce the child’s
sensory over-responsivity.
For instance, Shapiro et al. (2009a, b) adapted the sensory environment of the
dental office for children with developmental disabilities (DD), another population that is
commonly reported to experience sensory processing difficulties (Baranek et al., 2007).
Altering the visual, auditory, vibratory and tactile characteristics of the dental
environment significantly decreased the duration of negative and anxious behaviors
exhibited by DD children and their typical controls, in comparison to the regular dental
environment. Additionally, children in both groups exhibited significantly lower
electrodermal activity, indicative of increased relaxation, in the sensory adapted as
compared to the regular dental environment.
Sensory Integration is an approach implemented by occupational therapists
which engages children in “individually tailored sensory-motor activities…[in order to
improve their] ability to process and utilize sensory information so that the child can
105
develop better sensory modulation for attention and behavioral control” (Schaaf, 2011,
p. 248). Preliminary research indicates that this intervention is successfully able to
decrease children’s sensory symptoms (Schaaf, 2011; Fazlioglu & Baran, 2008; Smith
et al., 2005; Schaaf & Nightlinger, 2007) as well as improve play, fine and gross motor
skills, social interaction and attention (Schaaf, 2011; Schaaf & Nightlinger, 2007;
Mailloux & Smith Roley, 2010).
Additionally, sensory strategies may be useful for typically developing children
undergoing oral care. Recent research suggests that, based on parent perception,
approximately 5-33% of typically developing children experience difficulty with sensory
processing (Tomchek & Dunn, 2007; Ahn et al., 2004; Ben-Sasson et al., 2009a;
Leekam et al., 2007); this is supported by research findings that typical children with
Sensory Processing Disorders are physiologically different than typical children without
sensory processing difficulties on measures of sympathetic nervous system activity
(EDA; McIntosh et al., 1999; Miller et al., 2001), parasympathetic nervous system
activity (vagal tone; Schaaf et al., 2003; Schaaf et al., 2010), and EEG (Gavin et al.,
2011; Davies & Gavin, 2007; Davies et al., 2010). Additionally, preliminary evidence
indicates that Sensory Processing Disorder may occur in the absence of any other
diagnoses (Reynolds & Lane, 2008).
These strategies may reduce the impact of sensory stimuli during oral care for
this population. This may occur by creating an environment designed to attenuate fight,
fright, or flight reactions or assisting in the development of “the child’s nervous
system…to better modulate, organize, integrate and utilize [sensory] information from
the environment, and thus, not [be] driven to seek or avoid sensation in maladaptive
106
ways” (p. 248) via Sensory Integration Intervention (Schaaf, 2011). These strategies
may be best devised by an interdisciplinary team, including those with expertise of oral
care (e.g., dentists and dental hygienists) as well as sensory processing (e.g.,
occupational therapists). Further research into these techniques and their application to
oral care is necessary and has enormous potential to improve oral care experiences for
children with sensory processing difficulties, such as those with ASD.
This study adds to the understanding of the oral care experiences of children with
ASD, specifically as they pertain to sensory over-responsivity. However, differences
also exist in the experiences and challenges of children with ASD as compared to their
typically developing peers. For more information about oral care experiences in the
home, at the dentist, as well as access to oral care in children with ASD as compared to
typically developing children utilizing the same “Dental Care in Children” survey, please
see the related article by Stein et al. (2012).
Finally, several limitations should be noted. Groups were formed based on
parent-report of ASD diagnosis and were not confirmed by gold-standard diagnostic
tools such as the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 1999) or
Autism Diagnostic Interview Revised (ADI-R; Rutter et al., 2003). The “Dental Care in
Children” survey is not a standardized tool, and responses were based on parent-
reports which may not provide as accurate answers as dental professionals to questions
investigating children’s responses to sensory stimuli. Lastly, due to the non-
experimental, correlational nature of this study, causality of the relationship between
sensory over-responsivity and oral care and behavior difficulties cannot be determined.
However, despite these limitations, the current findings reveal important relationships
107
between sensory processing and oral care difficulties within the ASD population.
Conclusion
Based on this study’s results, the following conclusions can be made:
1. Children with ASD were significantly more likely to be over-responsive to sensory
stimuli encountered in their daily lives, in comparison to typically developing
children.
2. Significantly more parents of ASD Sensory Over-Responders, in comparison to
ASD Sensory Not Over-Responders, reported that their child experienced
difficulty with oral care (toothbrushing) in the home on a daily basis.
3. Significantly more parents of ASD Sensory Over-Responders, in comparison to
ASD Sensory Not Over-Responders, reported that their child experienced
difficulty with dental prophylaxis, required restraint for prophylaxis, and rated their
child’s experience in the dental office as negative. Additionally, more parents of
Over-Responders reported that their child exhibited an increase in uncooperative
behaviors at the dentist’s office, which parents believed made dental
appointments more challenging.
4. Although there are likely many variables that contribute to oral care difficulties in
children with ASD, an association exists between these difficulties and sensory
processing problems (over-responsivity to sensory stimuli).
108
CHAPTER FIVE: STUDY THREE
Sensory Responsivity as measured by Electrodermal Activity
in Children in the Dental Environment
Overview
This chapter describes the pertinent literature, research design and methodology
and results for the third study of this project. The purpose of this study was to
investigate arousal and sensory responsivity in children with ASD and TD children in the
dental environment, as measured by electrodermal activity. We examined arousal level
and sensory responsivity of both children with ASD and TD children during baseline and
dental cleaning. Specifically, we examined if patterns of arousal and sensory
responsivity were different in children with ASD and TD children, what factors
electrodermal activity was correlated with (e.g., ASD diagnosis, general anxiety, dental
anxiety, sensory processing), and how arousal/responsivity changed throughout the
dental cleaning.
Literature Review
Autism Spectrum Disorders (ASD) are characterized by impaired social
interaction, abnormalities in communication, restricted interests, and repetitive and
stereotypical behaviors (APA, 2000; CDC, 2011). Difficulties tolerating and cooperating
with routine oral examination and prophylaxis in the dental office is common in children
with ASD (Marshall et al., 2007; Marshall et al., 2008; Fahlvik-Planefeldt & Herrstrom,
2001; Brickhouse et al., 2009; Loo et al., 2008; Loo et al., 2009; Stein et al., 2011; Stein
et al., 2012a). Past research has suggested that the causes of the difficulties tolerating
and cooperating with dental care in this population are multifactorial, with risk factors
including: impairments in both receptive and expressive language, difficulty with
109
changes in daily routines, dental fear and anxiety, co-occurrence of other disorders, and
difficulties processing sensory information (Marshall et al., 2007; Marshall et al., 2008;
NIDCR, 2004; Nelson et al., 2011; Stein et al., 2011; Stein et al., 2012b; Stein et al.,
2013).
Although the relationship between sensory processing difficulties and oral care
has only recently been empirically investigated (Stein et al., 2011; Stein et al., 2012b;
Stein et al., 2013), the research indicates that sensory difficulties have the potential to
impede successful oral care. Sensory processing difficulties occur when sensory
information is perceived and processed in an atypical manner by the brain, leading to
either over- or under-reactions to stimulation (Baranek et al., 2006; Baranek et al.,
2007). It has been hypothesized that people with "low neurological thresholds" to
sensory stimuli have an over-responsive nervous system, causing them to notice and
be bothered by stimuli present in daily life more so than others (Brown et al., 2001;
Dunn, 2001; Reynolds & Lane, 2008). Those with "high neurological thresholds" have
an under-responsive nervous system which causes them to often not notice or respond
to sensory events or to attempt to counteract their low arousal by seeking high levels of
sensation through constant movement (Brown et al., 2001; Dunn, 2001; Lane, 2002;
Miller et al., 2007c; Parham & Mailloux, 2010; Reynolds & Lane, 2008).
Atypical sensory-related behaviors are most often identified using parent-report
or observational measures of behavior (Baranek et al., 2006; Baranek et al., 2007; Ben-
Sasson et al., 2009b; Leekam et al., 2007; Tomchek & Dunn, 2007). Using these
parent-report and observational behavior measures, challenges in sensory processing
have been reported to occur in 69-95% of children with ASD (Baranek et al., 2006;
110
Baker et al., 2008; Geschwind, 2009; Tomchek & Dunn, 2007). Atypical responses are
reported in reactions to various sensory stimuli, including: visual, vestibular (movement),
auditory, tactile, auditory, olfactory and gustatory. For instance, based on parent report,
Tomchek and Dunn (2007) found that 58% of children with ASD are distracted or have
trouble functioning when there is a lot of surrounding noise, 51% respond negatively to
unexpected loud noises, 24% cover their eyes or squint to protect their eyes from light,
and 46% avoid certain tastes or food smells. In regard to oral care, over-responsiveness
to sensory stimuli is particularly problematic due to the stimuli encountered during the
activities required to maintain adequate oral health, both in the home and dental office
(Stein et al., 2013). Of the many sensory systems that may be affected by sensory
processing difficulties, tactile, gustatory, visual, and auditory sensitivities are especially
apparent in the dental setting (NIDCR, 2004).
Based on parent-report and observational measures of behavior, children with
ASD have been found to exhibit three patterns: children who are over-responsive to
sensory stimuli and those who are under-responsive to stimuli, or children exhibiting a
combination of both patterns (Ben-Sasson et al., 2009b). Children who are over-
responsive exhibit exaggerated and aversive responses to stimuli that others would
consider non-noxious, often choosing to avoid or escape from sensory stimuli in some
or all sensory domains (Ayres, 1964; Baranek et al., 2006; Bundy & Murray, 2002;
Dunn, 2001; Kimball, 1999; Lane, 2002; Miller et al., 2007c; Parham & Mailloux, 2010;
Souders et al., 2002; Tomchek, 2010). Children who are under-responsive to stimuli
often do not notice or respond to sensory events around them, or may seek high levels
of sensation through constant movement, jumping, or other activities, possibly to
111
increase arousal levels in their central nervous system (Dunn, 2001; Miller et al., 2007c;
Lane, 2002; Parham & Mailloux, 2010).
Sensory abnormalities have also been found in the ASD population utilizing
psychophysiological measures such as electroencephalographic measures (EEG;
Gavin et al., 2011), vagal tone (Schaaf et al., 2010) and electrodermal activity (Schoen
et al., 2008b; Schoen et al., 2009). Results have been variable with physiological
measures, although similar patterns to those detected through behavioral measures
have emerged (some children over-responsive, some children under-responsive, and
some children exhibiting both; Barry & James, 1988; Miller et al., 2001; Palkovitz &
Wisenfeld, 1980; Schoen et al., 2009). Electrodermal activity (EDA) is a non-invasive
way to measure physiological arousal and responses to sensory stimuli. EDA measures
the ability of the skin to conduct an electrical current, which increases when the
sympathetic nervous system is activated (Dawson et al., 2000; Hugdahl, 1995; Stern,
2001). The sympathetic nervous system is the “fight or flight” system, preparing an
organism to take action in an emergency or time of stress (Hugdahl, 1995). Therefore,
EDA is especially useful in measuring responses to emotional or stressful stimuli, in
addition to those that require attention or information processing (Dawson et al., 2000).
Using measures of EDA, some studies have reported that children with ASD
exhibit both atypically high levels of tonic arousal and skin conductance responses
(over-responsivity; Barry & James, 1988; Palkovitz & Wisenfeld, 1980). Other studies
have found atypically low levels of tonic arousal and skin conductance responses in
children with ASD (under-responsivity; Miller et al., 2001; Schoen et al., 2009), and
even other studies have indicated that some children do not respond to stimuli at all
112
(Hirstein et al., 2001; Schoen et al., 2008b; 2009; van Engeland, 1984). However,
additional research found no differences between children with ASD and TD children on
both phasic and tonic measures (Barry & James, 1988; van Engeland, 1984). Recent
research suggests a two-group pattern in children with ASD, with some exhibiting
sensory over-responsivity and others under-responsivity. It is possible that due to the
heterogeneous nature of responsivity in children with ASD, this pattern may explain the
discrepancies in past EDA findings, as hypo-responsive children may have “balanced
out” hyper-responsive children when results were averaged within the ASD group (Brett-
Green et al., 2004; Hirstein et al., 2001; Schoen et al., 2008b; van Engeland, 1984).
Studies investigating the relationship between behavioral and physiological
measures of sensory processing in children with ASD are few, but also have
inconsistent findings. For instance, although Schoen et al. (2009) found that children
with ASD (n=38) were significantly different than typically developing children (TD;
n=31) and children with Sensory Modulation Disorder children (SMD; n=33) on
behavioral measures and physiological (EDA) measures, no significant correlations
existed between behavioral (Short Sensory Profile) and physiological assessments of
sensory processing (SCR amplitude, SCR magnitude, orienting response). This may be
due to the sample of children with ASD in this study who were physiologically under-
responsive (low EDA) while reported to be behaviorally over-responsive on a parent-
report questionnaire. Conversely, Chang (2009) found that parent-report behavioral
measures of sensory processing were positively correlated with physiological measures
of sensory responsivity to auditory stimuli (e.g., frequency of NS-SCRs during recovery,
113
SCR amplitude) as well as arousal (e.g., baseline SCL, baseline frequency of NS-
SCRs) in children with ASD.
Interestingly, although at a much lower prevalence, some typically developing
children have also been found to exhibit sensory processing difficulties on both parent-
report behavioral (14-33%; Ahn et al., 2004; Ben-Sasson et al., 2009a; Tomchek &
Dunn, 2007; Leekam et al., 2007) and physiological measures (McIntosh et al., 1999;
Lane et al., 2010). These children have been described as having sensory processing
or sensory modulation dysfunction (SPD or SMD; Ahn et al., 2004; Tomchek & Dunn,
2007; McIntosh et al., 1999). In studies of children with SMD, behavioral measures of
sensory processing difficulties (e.g., Sensory Profile, Short Sensory Profile) have also
been found to be significantly associated with physiological measures of sensory
processing difficulties, including both EDA which reflects the sympathetic nervous
system (McIntosh et al., 1999; Miller et al., 2001) and vagal tone which reflects the
parasympathetic nervous system (Schaaf et al., 2010). When children with SMD were
divided into hyper-responder, midrange responder, and non-responder groups based on
EDA variables, hyper-responders and non-responders had significantly different
Sensory Profile scores as compared to midrange responders, with both the hyper- and
non-responder groups having sensory processing scores less typical than the midrange
responder group (McIntosh et al., 1999). Similarly, using a measure of the
parasympathetic nervous system (vagal tone), children with the most severe SMD,
based on scores on the subdomains of the Short Sensory Profile, exhibited significantly
lower baseline vagal tone in comparison to TD children (Schaaf et al., 2010).
114
Sensory processing difficulties and their relationship to oral care challenges have
limited empirical data. Results of parent-report behavioral studies regarding sensory
responsivity and oral care indicate that children with ASD experience sensory over-
responsivity significantly more frequently than TD children and that those sensory
sensitivities are associated with difficulties with oral care (Stein et al., 2011; Stein et al.,
2012b; Stein et al., 2013). Interestingly, the one study that has investigated the
physiological arousal of children during routine oral care found that children with
developmental disabilities (DD; not ASD) exhibited a lower level of arousal as measured
by EDA than their typically developing controls (Shapiro et al., 2009a; 2009b).
According to Shapiro et al. (2009a; 2009b), this indicates that the DD children were
more relaxed and less stressed during prophylaxis. However, these studies did not
include children with ASD and did not utilize standard EDA techniques for measurement
or analysis; therefore, this study needs to be replicated with children with ASD using
more traditional EDA measures. Therefore, it is currently not known if
psychophysiological data supports parental-report of sensory responsivity in the dental
office.
Prior studies utilizing parent-report behavioral or EDA measures typically
investigate responses to one sensory modality at a time; for example, asking a parent if
his/her child ‘holds hands over ears to protect ears from sounds’ (behavioral; Tomchek
& Dunn, 2007) or examining a child’s skin conductance responses to multiple trials of a
single auditory stimuli (physiological; Chang, 2009). The current study is unique in that
multiple sensory modalities are present and experienced by the child while he or she
undergoes routine dental cleanings.
115
As the incidence of ASD has increased substantially, with current statistics citing
the prevalence of ASD in the United States to be approximately 1 in 88 children (CDC,
2013), more dentists will encounter children with ASD in their practice. It is therefore of
utmost importance to understand the relationship between sensory processing and oral
care in order to provide appropriate and effective dental care to this population.
Purpose and Hypotheses
The purpose of this study was to investigate differences in sensory over-
responsivity and under-responsivity in both children with ASD and TD children in the
dental environment, as measured by electrodermal activity. Additionally, we explored
what factors (e.g., diagnosis, sensory processing, general anxiety, and dental anxiety)
were related to high and low responsivity (as measured by EDA). Using parent- and
dentist-report surveys, video-recordings of children's behavior during dental cleaning
and electrodermal activity data, we examined four hypotheses:
1. Children with a diagnosis of ASD will show a greater prevalence of electrodermal
over- and under-arousal at baseline as well as electrodermal sensory over-
responsivity and under-responsivity during dental cleaning, compared to EDA
patterns shown by typical children.
2. Children with ASD will exhibit significantly greater general and dental anxiety as
well as significantly greater distress behavior during dental care compared to TD
children in the same EDA sensory responsivity group (low, mid-range, high).
3. ASD diagnosis, general anxiety, dental anxiety and greater difficulty tolerating
dental care will be correlated with EDA during oral care.
116
4. Atypical sensory processing, as measured by parent report on the Short Sensory
Profile, will be correlated with EDA during oral care.
Additional exploratory analyses investigating the stability of EDA throughout the
dental cleaning process were examined.
Methodology
Participants
Forty-four subjects were recruited for participation in this study; 22 with a
diagnosis of ASD and 22 typically developing (TD). These subjects were participating in
a National Institute of Dental and Craniofacial Research funded R34 study, Sensory
Adapted Dental Environments to Enhance Oral Health in Children with Autism Spectrum
Disorders Study (the SADE study; 1R34DE022263-01). Eligibility requirements for both
the ASD and typically developing groups were as follows: (1) ages 6 through 12 years;
(2) has an accompanying parent/guardian who speaks English or Spanish; (3) lives in
the Los Angeles County within local commuting distance of CHLA; (4) is in need of oral
cleaning (oral examination and dental prophylaxis; no cleaning within the previous four
months); (5) does not have a disability such as cleft palate, significant motor
impairments (e.g., cerebral palsy), or any known genetic, endocrine, or metabolic
dysfunctions that would interfere with oral care or affect EDA; (6) willing to participate
(assent was be obtained if appropriate), able to participate, and has consent of
parent/guardian to participate.
Additional inclusion criteria for the ASD group included a confirmed diagnosis of
“Autism”, "Asperger's Disorder", or “PDD-NOS” using the Autism Diagnostic
117
Observation Scale (ADOS). Additional exclusion for the TD group included: (1)
diagnosis of ASD or any other developmental disorder; (2) diagnosis of any
psychological disorder (e.g., ADHD, major/clinical anxiety disorder, or bipolar disorder);
and (3) sibling(s) diagnosed with ASD. Based on parent report, no children were taking
anti-cholinergic medications which may impact EDA measures (Schnur, 1990).
Procedures
This study was submitted to CHLA’s Committee on Clinical Investigations (CCI)
Full Committee Review on September 13, 2011 and was approved for human subjects
on March 27, 2012 (CCI-11-00250; see Appendix D for IRB approval letter). Following
CCI approval a facilitated review was submitted to the Institutional Review Board of the
University of Southern California (USC HSC-IRB) Health Sciences with approval
obtained on September 5, 2012 (HS-12-00521). See Appendix E for IRB approval letter.
ASD group recruitment. Participants with ASD were recruited from: (1) current
and past CHLA dental clinic patients; (2) lists of participants in previous research
studies at CHLA who consented to be approached regarding additional research
opportunities (e.g., the Coding Children’s Behavior During Oral Care Study); and (3)
recruitment flyers posted at the CHLA Dental Clinic, Boone Fetter Clinic, and the USC
University for Excellence in Developmental Disabilities (UCEDD).
Typically developing group recruitment. Typically developing participants
were recruited from (1) current and past CHLA dental clinic patients; (2) participants
who served as controls in other CHLA studies; and (3) recruitment flyers posted at
CHLA.
118
Following recruitment, participating parents and children had two to three
sessions with the researchers. The first took place prior to the dental cleaning and
consisted of consent and questionnaire completion; the second included confirmation of
ASD diagnosis (if applicable). The final visit was the actual dental cleaning at CHLA.
Session I: Prior to dental cleaning at CHLA (Consent and questionnaire
completion)
Typically developing group. If parents indicated interest in participating in the
study and the child met eligibility criteria a visit was scheduled with the parent(s) prior to
their child’s dental cleaning. This visit took place either at the participant’s home or at
CHLA. At this time, the Consent form was reviewed with the parent(s); they were given
an opportunity to ask questions, and subsequently signed the Consent form if they were
willing to participate. Parents then completed questionnaires regarding their child’s
sensory processing, previous dental experiences, and anxiety (see Appendices F & G).
This process required approximately 20 minutes to review the Consent and 40 minutes
to complete the surveys, totaling one hour. A social story designed to familiarize the
child with electrode (sensor) application during dental care was provided to the family,
with instructions to read the story to the child a minimum of two times prior to the
cleaning. Following the completion of this session, participants were scheduled for a
dental cleaning appointment at CHLA (see below for details).
ASD Group. If parents indicated interest in participating in the study and the
child met general eligibility criteria, we asked parents if their child had ever been
administered the Autism Diagnostic Observation Schedule (ADOS), and if so, if we
could have a copy of the evaluation.
119
ASD participants with confirmed ASD diagnosis. If the child was eligible for this
study and already had an ASD diagnosis based on the ADOS, a visit was scheduled
with the parent(s) prior to their child’s dental cleaning. This visit took place either at the
participant’s home or at CHLA. At this time, the Consent form was reviewed with the
parent(s); they were given an opportunity to ask questions, and subsequently signed the
Consent form if they agreed to participate. Parents then completed questionnaires
regarding their child’s sensory processing, previous dental experiences, and anxiety
(see Appendices F & G). This process took approximately 20 minutes to review the
Consent and 40 minutes to complete the surveys, totaling one hour. A social story
designed to familiarize the child with electrode (sensor) application during dental care
was provided to the family, with instructions to read the story to the child a minimum of
two times prior to the cleaning. Following the completion of this session, participants
were scheduled for a dental cleaning appointment at CHLA (see below for details).
ASD participants without confirmed ASD diagnosis. If a child did not have a
ADOS confirmed ASD diagnosis, in order to determine whether the child was eligible for
the study, we requested parents to schedule an appointment at the University of
Southern California Center for Excellence in Developmental Disabilities (UCEDD), free
of charge and completely confidential, to confirm the child’s ASD diagnosis via
administration of the Autism Diagnostic Observation Schedule (ADOS) by M. Williams,
Ph.D. or I. Zamora, Ph.D. ADOS administration required approximately 45 minutes to
complete. A home or CHLA visit to complete the Consent form and study questionnaires
and provide the social story also took place prior to ADOS administration, with details
the same as ASD participants with confirmed ASD diagnoses.
120
If the child met the ASD criteria for this study (which all participants did following
ADOS administration), he/she was invited to continue to participate in the study and
was scheduled for a dental visit at CHLA.
Session II: Dental Cleaning at CHLA. For both groups, immediately prior to the
scheduled dental cleaning at CHLA, the purpose and protocol of the study was
reviewed with the child and the child was given the opportunity to ask questions. The
child (if able) agreed to participate, signed the Assent form; however, if the child was
present at the previous home or CHLA visit, Assent completion took place then. Once in
the dental chair, two electrodes (sensors) were placed on the distal phalynx of digits two
and three of the child’s non-dominant hand by the researcher; these electrodes were
attached to wires that connect to the BIOPAC MP-150 and secured with medical tape;
these sensors were used to measure sweat gland activity (See Figure 5.1). Following
electrode placement, a three minute rest period took place to collect baseline EDA data
(pre-cleaningREST), followed by a dental cleaning (oral examination, prophylaxis, and
fluoride application). Once the dental cleaning was completed, a second three minute
rest period took place (post-cleaningREST), followed by removal of electrodes and the
end of the dental visit. Following the completion of the above, the dentist who performed
the child’s cleaning completed two short surveys indicating how anxious and/or
cooperative he/she felt the child was throughout the dental cleaning.
121
Figure 5.1. Schematic of EDA set-up: Sensory responsivity as measured by
electrodermal activity in children in the dental environment. Pictures from BIOPAC
Systems, Inc. Retrieved from www.biopac.com.
Instruments
Multiple instruments were utilized to describe and characterize the study groups.
For instance, data was gathered to understand participant demographics, diagnosis,
expressive communication skills, arousal, sensory processing and responsivity, anxiety,
and overt distress behavior exhibited during dental treatment. This data was also used
to examine whether differences existed in sensory responsivity between TD and ASD
groups in regard to sensory over-responsivity and under-responsivity, as well as what
factors were related to arousal and responsivity levels measured by electrodermal
activity in children undergoing routine dental cleanings in the dental environment.
122
Demographic information. Age, gender, ethnicity, race, and parental education
level were collected as measures to describe the participants. Child’s age (years and
months), ethnicity (Hispanic/Latino or not Hispanic/Latino), race (American
Indian/Alaska native, Asian, Black/African American, Native American/Pacific Islander,
White/Caucasian) and parental education level (high school/GED or less, some
college/vocational degree/associates degree, college degree or above) were collected.
ASD diagnosis. Autism diagnosis was obtained through Autism Diagnostic
Observation Schedule (ADOS) administration (Lord et al., 1999) by either our team at
the UCEDD or previously by another psychologist. This assessment is considered to be
the gold-standard for ASD diagnosis (Falkmer et al., 2013; Gotham et al., 2011). It is a
semi-structured observational measure involving a series of standardized activities
which vary depending on the age and language level of the child. Scoring includes
evaluation of the child’s reciprocal social interactions, quality of communication, and
repetitive behaviors or interests. The ADOS shows excellent inter-rater reliability within
domains, is internally consistent, and is sensitive and specific in diagnosing ASD (Lord
et al., 2000). Cut scores exist on the ADOS to categorize children as “Autism”,
"Asperger's Disorder", “PDD-NOS”, or “Nonspectrum” (Lord et al., 2000). Children
categorized as both “Autism”, "Asperger's Disorder", and “PDD-NOS” were included in
this study. This assessment is available in and was administered in both English and
Spanish.
Communication. The Expressive Language Subtest of the Communication
Domain of the Vineland Adaptive Behavior Scales II (VABS-II; Sparrow et al., 2005) is a
parental report measure of a child’s competence in communication. This subtest
123
contains 54 items which are scored as a 0 (never), 1 (sometimes), or 2 (usually) based
on stated criteria and has norm-referenced scaled scores with a mean of 15 and a
standard deviation of three. Level of expressive language is an important variable
distinguishing higher from lower functioning children with ASD as lower expressive
language skills may impact a child’s ability to cooperate and cope with dental treatment
due to difficulty expressing feelings (Marshall et al., 2007; Marshall et al., 2008; NIDCR,
2004). The test manual documents excellent reliability and validity, and a study of the
Vineland in children with ASD demonstrated that the expressive communication
subscale best discriminated among children with different levels of ASD severity (Paul
et al., 2004). This assessment is available in English and Spanish.
Sensory processing. The Short Sensory Profile (SSP; Dunn, 1999) is a
standardized screening tool designed to measure children's responses to sensory
events in everyday life in multiple modalities (e.g., tactile, olfactory, gustatory,
vestibular, auditory, and visual). This 38-item questionnaire is norm-referenced for
children aged 3 to 10 years. Using 5-point Likert scales, caregivers report how
frequently their child responds to sensory input in daily life activities. Items are grouped
into seven categories of sensory functioning. The Sensory Profile has high reliability and
validity (McIntosh et al., 1999; Miller et al., 2001), is available in English and Spanish,
and is the most frequently used assessment of sensory processing in children with ASD
(Ben-Sasson et al., 2009a).
Anxiety and Overt Distress Behavior. Anxiety and overt distress behavior were
measured by a variety of tools in order to assess the child’s general anxiety, dental-
124
specific anxiety, dentist’s perception of child’s anxiety and overt distress behavior and
researcher-coded overt distress behavior.
Child and Adolescent Symptom Inventory-Anxiety Scale (CASI-Anx). This
general anxiety measure assessment has been modified from the CASI, a 132 item,
DSM-IV referenced rating scale. The CASI-Anx has been validated on a sample of
children with autism aged 5-17 years, including children with IQs below 70 and children
without intellectual disabilities (Sukhodolsky et al., 2008).
The CASI-Anx was completed
by the parent and contains 20 items assessing a range of anxiety symptoms. Items are
scored on a 4-point Likert scale ranging from 0 (never) to 3 (very often). No cut scores
exist, but higher scores indicate greater anxiety severity; additionally, scores of 2 and 3
are considered clinically significant (Sukhodolsky et al., 2008). See Appendix F.
Children’s Fear Survey Schedule – Dental Subscale (CFSS-DS; Cuthbert &
Melamed, 1982). This tool was used to measure participants’ anxiety and past reactions
to the dental environment. The tool was completed by the parent prior to the dental
cleaning and consists of 15 items that pertain to dental treatment, with responses
ranging on a 5-point Likert scale from 1 (not afraid at all) to 5 (very afraid). Total scores
range from 15 to 75, with scores above 32 indicating “high dental fear” (Ten Berge et
al., 2002a). This assessment has high reliability and validity, and normative data are
available for children aged 4 to 13 years (Aartman et al., 1998; Cuthbert & Melamed,
1982; Newton & Buck, 2000; Ten Berge et al., 2002a; Ten Berge et al., 2002b; Ten
Berge et al., 2002c). See Appendix G.
Anxiety and Cooperation Scale (Veerkamp et al., 1995). This tool, completed by
the dentist following completion of the cleaning, combines Venham et al.’s (1977)
125
clinical assessments of anxiety and cooperative behavior. It has been shown to assess
changes in children’s anxiety, fear, and cooperation as rated by dentists, and has
established reliability and validity (Schricks & van Amerongen, 2003; Versloot et al.,
2005). Overall patient behavior during treatment is rated at the completion of the dental
cleaning using a one-item Likert scale ranging from 0 (relaxed, smiling, demonstrates
desired behavior, complies with demands) to 5 (out of control, loud crying, reverts to
primitive flight responses, physical restraint required). See Appendix H.
Frankl Scale (Frankl et al., 1962). This tool is one of the most commonly used
rating scales to asses children’s dental anxiety and behavior in the dental office
(Aartman et al., 1996); it is universally taught and utilized by both researchers and
clinicians to score behavior in the dental environment (Kupietzky et al., 2012). This
assessment has high inter-rater reliability and moderate validity (Aartman et al., 1996)
and has been shown to significantly correlate with other behavioral scales which are
used to assess anxiety and behavior during dental treatment (Hosey & Blinkhorn, 1995).
It is completed by the dentist, either at the cleaning or following a specific component of
dental care and uses a one-item Likert Scale ranging from 1 (definitely negative) to 2
(negative) to 3 (positive) to 4 (definitely positive). See Appendix I.
Children’s Dental Behavioral Rating Scale (CDBRS). This tool was developed for
the larger NIDCR-funded study in order to evaluate challenging behaviors exhibited by
children in the dental office. The child’s behavior is videotaped during the dental
cleaning; the first five minutes of prophylaxis is coded at a later date. Coding includes
marking the presence or absence of three distress behaviors (mouth movement, head
movement, forehead movement) and the severity of two distress behaviors
126
(whimper/cry/scream, verbal stall or delay) during each one-minute interval of the five
minute video. Inter-rater reliability by two trained raters on a sample of 15 children with
and without ASD (35% of total sample) was K=.97, p<.001. The raw score (0-45) is be
converted, via Rasch analysis, to a scale score of 1-100 for easier understanding. See
Appendix J.
Electrodermal Activity (EDA). EDA provides a physiological marker of responses
to stimuli, reflecting the skin conductance of the palmar eccrine sweat glands which are
controlled by the sympathetic nervous system (Dawson et al., 2000; Hugdahl, 1995;
Stern et al., 2001). Two silver-silver chloride disposable electrodes, pre-gelled with
isotonic gel and 1cm in diameter, were placed on the distal phalynx of digits two and
three of the child’s non-dominant hand. EDA was then recorded by connecting the
electrodes to the BIOPAC MP150 system.
In longer-lasting situations, such as a dental cleaning, ongoing measurement of
skin conductance level (SCL) and frequency of non-specific skin conductance
responses (NS-SCRs) are the most useful electrodermal measures (Dawson et al.,
2000). It is well-documented that tonic EDA readings, such as SCL and number of NS-
SCRs increase in stressful or painful situations as well as during challenging task
performance (Dawson et al., 2000; 2007; Hugdahl, 1995).
EDA components, such as SCL and NS-SCRs, exhibit significant test-retest
reliability (temporal stability) for control populations (r ranges from .40 to .85) when
measured over a duration of a few days to a year or longer (Dawson et al., 2000;
Dawson et al., 2007; Schell et al., 2002; Schoen et al., 2008b). Additionally, both phasic
and tonic measurements of EDA have been utilized in the past to investigate clinical
127
populations’ responses to sensory stimuli, including in subjects with ASD (Barry &
James, 1984; Edelson et al., 1999; James & Barry, 1984; Hirstein et al., 2001; Miller et
al., 2001; Schoen et al., 2008b; Shapiro et al., 2009a; 2009b; Stevens & Gruzelier,
1984; van Engeland, 1984).
Data Analysis
Electrodermal data collected during the pre-cleaningREST and dental cleaning
periods were analyzed. EDA components were computer scored off-line using the
BIOPAC program AcqKnowledge, an interactive program which allows measurement,
analysis and transformation of EDA data. Settings within AcqKnowledge were created
to delete potential artifacts. However, as is standard in EDA analyses, recordings were
checked by hand to ensure no skin conductance responses were missed or incorrectly
marked; 25% of the data were double coded to ensure that the marking of additional
SCRs was reliable, with 96% agreement (calculated as the number of matching NS-
SCRs divided by total number of NS-SCRs coded by the researcher).
As is common practice, tonic SCL was transformed prior to analysis to reduce
the skew and kurtosis of the data with a logarithmic transformation. Number of non-
specific skin conductance responses (NS-SCRs) were totaled over each time period for
each subject and converted to the rate of fluctuations per minute (Hugdahl, 1995 p.
105); NS-SCRs were counted conservatively, only when the amplitude was greater than
or equal to .05μS, as suggested by Dawson et al. (2000) and Hugdahl (1995).
Analyses of SCL and NS-SCRs. In order investigate the presence of differing
levels of sympathetic nervous system activation, SCL over the three-minute baseline
period prior to dental cleaning (pre-cleaningREST) was analyzed for the TD group. The
128
SCLs of the TD group were then split into quartiles; children in the lowest quartile were
considered sensory low-responders (0-24%; LRs) and children in the highest quartile
were termed sensory high-responders (76-100%; HRs); the middle 50% of the TD SCL
distribution (25-75%) were considered mid-responders (MRs). These quartiles served
as cut-scores to categorize low-responders, mid-responders, and high-responders.
Likewise, the TD distribution for NS-SCR frequency was used to create scores to
categorize low-responders (0-24%), mid-responders (25-75%), and high-responders
(76-100%) for additional analyses focused on non-specific responses in addition to
those related to tonic skin conductance level. These groups (low-, mid-, or high-
responders), based on baseline TD EDA (both SCL and NS-SCRs), were applied to
children with ASD and TD children in order to conduct analyses.
Correlations among the different parts of the dental cleaning (oral examination,
prophylaxis and fluoride application) were calculated to examine if they represented
different components or if an overall dental cleaning variable would be appropriate.
Results suggested that use of one total EDA dental cleaning variable would be
appropriate. Chi-Square Contingency Table analyses were performed to investigate if
significant differences existed between ASD and TD groups in frequency of participants
within each responsivity group (low-, mid-, high-responders) during baseline and dental
cleaning. Two independent samples t-tests were used to determine if differences
existed between general anxiety, dental anxiety, and distress behaviors within ASD
versus TD groups. Analyses of variance were used to determine if mean differences
existed among responsivity groups in general anxiety, dental anxiety, and distress
behaviors within ASD-only or TD-only groups. Spearman non-parametric correlation
129
coefficients were calculated to test the relationship between EDA variables (SCL and
NS-SCR frequency) and ASD diagnosis, sensory processing, general anxiety and
dental anxiety and measures of overt uncooperative behaviors.
In order to identify the EDA patterns exhibited by individuals in the study, SCLs
were plotted graphically for all measurement time periods and Spearman correlation
coefficients were computed to investigate the relationships between preREST, oral
examination, prophylaxis, and fluoride application SCLs and NS-SCR frequencies.
All analyses were conducted at the .05 significance level. However, due to the
small sample size, analyses that approached significance at p≤.10 are also discussed.
Results
Descriptive Variables
There were no significant differences in age, ethnicity, race or paternal education
between the ASD and TD diagnostic groups. There was a significant difference in
gender between the ASD and TD groups, with the ASD group containing significantly
more boys than the TD group (p=.04). There was also a significant difference in
maternal education level between ASD and TD groups (p=.04), with the mothers of
children in the TD group reporting lower education as compared to mothers of children
with ASD. Communication level, based on parent-report scores on the VABS-II, was
significantly lower in children with ASD as compared to TD children (p<.0001). See
Table 5.1.
When investigating differences in children with ASD and TD children in the three
EDA responsivity groups, no differences were found in age, gender, ethnicity, race,
maternal education or paternal education. However, children with ASD in the low- and
130
high-responder groups had significantly lower communication scores than TD children
(p’s = .03 and .001, respectively) and approached significance in the mid-responder
group (p=.15).
Table 5.1
Descriptive Statistics of Gender, Age, Race, Hispanic Status and Parental Education
Typical (N=21) ASD (N=22)
Mean (SD) Mean (SD)
Age (Years)
8.4 (2.1) 8.3 (1.9)
Communication Level
101.1 (5.35) 66.2 (29.5)
N (%) N (%)
Gender
Male 11 (52.4) 18 (81.8)
Female 10 (47.6) 4 (18.2)
Race
White, Caucasian 17 (81.0) 18 (81.8)
Asian 2 (9.5) 0 (0.0)
Black or African American 1 (4.8) 1 (4.6)
American Indian/Alaska Native 1 (4.8) 0 (0.0)
Native Hawaiian/Other Pacific Islander 0 (0.0) 0 (0.0)
More than one of above 0 (0.0) 3 (13.6)
Hispanic Status
Not Hispanic, not Latino 6 (28.6) 4 (18.2)
Hispanic, Latino 15 (71.4) 18 (81.8)
Parental Education Level
Mother
High School, GED, or less 9 (42.9) 4 (18.2)
Some college, Vocational degree,
Associates Degree
6 (28.6) 15 (68.2)
College Degree or above 6 (28.6) 3 (13.6)
Father
High School, GED, or less 7 (33.3) 11 (50.0)
Some college, Vocational degree,
Associates Degree
6 (30.0) 5 (22.7)
College Degree or above 7 (35.0) 5 (22.7)
Not reported 1 (4.8) 0 (0.0)
131
5
19
43
14 14
5
9 9
18
32
27
5
0
10
20
30
40
50
0 0.5 1.0 1.5 2.0 2.5
Percentage of Participants
Log Skin Conductance Level
TD
ASD
29
33
24
10
0
5
18
23
32
18
9
0
0
5
10
15
20
25
30
35
1.5 4.5 7.5 10.5 13.5 16.5
Percentage of Participants
Frequency of Non-Specific Responses per Minute
TD
ASD
Hypothesis One
This hypothesis investigated whether children with a diagnosis of ASD,
compared to TD children, exhibit a greater prevalence of sensory over- and under-
responsivity, as measured by EDA, at baseline and during dental cleaning.
EDA at baseline
After the deletion of one outlier (TD child), a two sample independent t-test
indicated no significant difference between ASD and TD groups during baseline (pre-
cleaningREST), as measured by either SCL (t<1.0) or frequency of NS-SCRs (t<1.0).
See Figures 5.2 and 5.3 for distributions of baseline SCL and NS-SCR frequency.
Figure 5.2. Distribution of skin conductance level for TD and ASD children at baseline.
Figure 5.3. Distribution of NS-SCR frequency for TD and ASD children at baseline.
132
29
48
24
23
45
32
0
10
20
30
40
50
60
Low-Responders Mid-Responders High-Responders
Percentage of Children in Group
Arousal at Baseline by Skin Conductance Level
TD
ASD
As no significant differences between the ASD and TD groups were found at
baseline, each group of participants was categorized into low-, mid-, and high- EDA
responder groups in order to investigate if there were differences in the number of
children with ASD in the low-, mid-, and high-responder groups as compared to TD
children.
Chi-Square analyses indicated that there were no significant differences in the
number of children with ASD compared to the number of TD children in the three SCL
groups (X
2
=.40). The low-responder (LR) group contained 29% of the TD sample (n=6)
and 23% of the ASD sample (n=5). The mid-responder (MR) group had 48% of the TD
sample (n=10) and 45% (n=10) of the ASD sample. The high-responder (HR) group had
24% of the TD sample (n=5) and 32% (n=7) of the ASD sample. See Figure 5.4.
Likewise, no significant differences between the mean baseline SCL was found
between children with ASD and TD children in any of the three responsivity groups. See
Table 5.2.
Figure 5.4. Percentage of children in each skin conductance responder group at
baseline.
133
When children were categorized into groups based on the TD distribution of NS-
SCR frequency during the baseline time period, there were likewise no significant
differences in the number of children with ASD compared to TD children in any of the
responsivity groups (X
2
=.81). The LR group contained 29% of the TD sample (n=6) and
18% of the ASD sample (n=4). The MR group had 43% of the TD sample (n=9) and
55% of the ASD sample (n=12). Lastly, the HR group contained 29% of the TD group
and 27% of the ASD group (n’s=6 each; see Figure 5.5. Likewise, there were no
significant differences between the mean baseline NS-SCR frequency between children
with ASD and TD children in any of the three responsivity groups. See Table 5.2.
Figure 5.5. Percentage of children in each non-specific skin conductance response
responder group at baseline.
EDA during Oral Care
Upon examination it was found that large, significant correlations existed
between SCL during the three components of the dental cleaning (oral examination,
prophylaxis, and fluoride application; r’s=.73-.98, all p’s <.0001). These large
29
43
29
18
55
27
0
10
20
30
40
50
60
Low-Responders Mid-Responders High-Responders
Percentage of Children in Group
Arousal at Baseline by Non-specifc Skin Conductance Response
Frequency
TD
ASD
134
correlations were found in the TD and ASD groups separately as well as when all
children were combined. Therefore, an overall average SCL for the entire dental
cleaning was created (oral examination SCL + prophylaxis SCL + fluoride application
SCL divided by 3) and used in the analyses.
Likewise, NS-SCR frequency was strongly and significantly correlated at the
three parts of the dental cleaning in children with ASD (r’s=.54-.84, all p’s ≤.02) and in
the two diagnostic groups combined (r’s=.59-.78, all p’s ≤.0001). In the TD group all
variables moderately to strongly correlated (r’s=.41-.83, all p’s≤.08). Therefore, an
overall average NS-SCR frequency for the entire dental cleaning was created (NS-SCR
frequency in oral examination + prophylaxis + fluoride application divided by 3) and
used in analyses.
Based on categorization by baseline tonic SCL, Chi-Square analyses indicated
that there were no significant differences in the number of children with ASD compared
to the number of TD children in the three SCL groups (X
2
=3.21). The low-responder
(LR) group contained 38% of the TD sample (n=8) and 27% of the ASD sample (n=6).
The mid-responder (MR) group had 38% of the TD sample (n=8) and 23% (n=5) of the
ASD sample. The high-responder (HR) group had 24% of the TD sample (n=5) and
50% (n=11) of the ASD sample. See Figure 5.6.
Differences between children with ASD and TD children were examined for each
of the three SCL responder groups. There was a significant difference in dental cleaning
mean SCL in the mid-responder group (t(11)= -2.31, p≤.05) with children with ASD
exhibiting higher SCL compared to TD children. No significant differences between ASD
and TD groups existed in the low- or high-responder groups during dental cleaning
135
although a trend existed in the expected direction, with children with ASD in all groups
exhibiting higher SCL during dental cleaning than their TD counterparts. See Table 5.2.
Based on categorization by baseline NS-SCR frequency, Chi-Square analyses
indicated that there was an approaching significant difference in the number of children
with ASD compared to the number of TD children in the three SCL groups (X
2
=5.85).
The low-responder (LR) group contained 57% of the TD sample (n=12) and 23% of the
ASD sample (n=5). The mid-responder (MR) group had 38% of the TD sample (n=8)
and 59% (n=13) of the ASD sample. The high-responder (HR) group had 5% of the TD
sample (n=1) and 18% (n=4) of the ASD sample. See Figure 5.7.
Utilizing these NS-SCR EDA groups, difference in mean NS-SCR frequency
approached significance in the mid-responder group (t(19)= -2.31, p=.07), but not in the
low- or high-responding groups, although a trend existed in the expected direction, with
children with ASD in all groups exhibiting higher average NS-SCR frequencies when
compared to their TD counterparts. See Table 5.2.
Figure 5.6. Percentage of children in each skin conductance responder group during
dental cleaning.
38 38
24
27
23
50
0
10
20
30
40
50
60
Low-Responders Mid-Responders High-Responders
Percentage of Child in Group
EDA Responsivity Group by Skin Conductance Level (SCL)
during Dental Cleaning
TD
ASD
136
Figure 5.7. Percentage of children in each non-specific skin conductance response
responder group during dental cleaning.
57
38
5
23
59
18
0
10
20
30
40
50
60
70
Low-Responders Mid-Responders High-Responders
Percentage of Children in Group
EDA Responsivity Group by Non-Specific Skin Conductance
Response (NS-SCR) during Dental Cleaning
TD
ASD
137
Table 5.2
Tonic (log) Skin Conductance Level and NS-SCR Frequency of Children with ASD and TD Children Categorized into
Responsivity Groups during Baseline and Dental Cleaning
Low-Responders Mid-Responders High-Responders
n mean SD
t-
value
p-
value
n mean SD
t-
value
p-
value
n mean SD
t-
value
p-
value
SCL at
baseline
TD 6 0.58 0.3
1.04
ns
(.35)
10 1.12 0.26
-1.45
ns
(.17)
5 2.01 0.29
<1.0
ns
(.84)
ASD 5 0.23 0.7 10 1.29 0.27 7 2.04 0.25
SCL during
cleaning
TD 8 0.25 0.49
<1.0
ns
(.72)
8 1.05 0.21
-2.39 0.047
5 2.04 0.28
<1.0
ns
(.95)
ASD 6 0.34 0.39 5 1.37 0.26 11 2.03 0.38
NS-SCR
frequency
at baseline
TD 6 1.75 1
<1.0
ns
(.54)
9 5.14 1.6
-1.59
ns
(.13)
6 10.63 3.37
<1.0
ns
(.72)
ASD 4 1.32 1.02 12 6.21 1.43 6 11.19 1.57
NS-SCR
frequency
during
cleaning
TD 12 1.27 0.65
<1.0
ns
(.64)
8 4.33 0.93
-1.94
0.067
5
1 9.47 n/a
<1.0
ns
(.52)
ASD 5 1.47 0.82 13 5.35 1.47 4 11.06 1.96
Note: SCL and NS-SCR frequency were significantly correlated at both baseline and during dental cleaning (r=.67 and
.62, respectively; both p’s<.0001).
138
Hypotheses Two and Three
These hypotheses investigated what factors were correlated with EDA during
oral care. They also examined whether children with ASD exhibited greater general and
dental anxiety as well as greater distress behavior during dental care compared to TD
children categorized in the same EDA responsivity group. See Table 5.3 for summary of
results presented below.
ASD Diagnosis
A small correlation that approached significance existed between ASD diagnosis
and average SCL during dental cleaning (r=.27, p=.08), indicating that there is a small
linear relationship between having a diagnosis of ASD and exhibiting higher SCL during
dental cleaning.
Likewise, a moderate, significant correlation was found between average NS-
SCR frequency during dental cleaning and ASD diagnosis (r=.43, p=.004), indicating a
linear relationship between having an ASD diagnosis and greater anxiety/stress during
dental cleaning, as measured by NS-SCR frequency.
General Anxiety: CASI-Anx
Between-group analyses.
When investigating differences between SCL responder groups in general
anxiety using the parent-report CASI-Anx, children with ASD in the low- and high-
responding SCL dental cleaning groups had significantly higher anxiety scores as
compared to the TD children in these responder groups (LR: t(12)= -3.24, p=.007; HR:
t(14)= -3.77, p=.002, respectively). The mid-responding group had no significant
difference between ASD and TD groups.
139
When examining NS-SCR frequency, differences in general anxiety scores were
found between TD and ASD groups in the NS-SCR low- and mid- EDA responder
groups, respectively (LR (11)t= -1.96, p=.10; MR: t(19)= -3.09, p=.006). No significant
difference was found between children with ASD and TD children in the high-responder
group, although all responder groups mean general anxiety scores were higher in
children with ASD as compared to their TD counterparts.
Within-group analyses.
In regard to within group comparisons, no significant differences were found in
general anxiety score in children with ASD in the LR, MR, or HR groups. Likewise, no
significant difference existed in the different responsivity groups in TD children. This
lack of significant differences was maintained when groups were formed based on SCL
as well as NS-SCR categorizations (ASD group = SCL: F=1.74; NS-SCR: F=.67; TD
group = SCL: F=.02; NS-SCR: F=.49).
Correlations.
No significant correlation was found between average SCL during dental
cleaning and general anxiety (CASI-Anx) in TD children (r= -.08) or children with ASD
(r=.0007). Likewise, no significant correlation was found between average NS-SCR
frequency during dental cleaning and general anxiety in TD (r=.08) or ASD groups
(r=.24), as measured by parent-report on the CASI.
Dental Anxiety: CFSS-DS
Between-group analyses.
Based on parent-report on the CFSS-DS, children with ASD had greater dental
anxiety than TD children in both the low- and high-responding SCL groups (LR: t(12) = -
140
3.67, p=.009; HR: t(14) = -2.18, p=.05) but not in the mid-responding EDA group.
Likewise, there were significantly more children with ASD with scores placing them in
the "high dental fear" range (total score of 32 or greater; Ten Berge et al., 2002c) in
both the low- and high-responding groups as compared to TD children (LR: t(12)= -3.40,
p=.007; HR: t(14)= -2.16, p=.06). This difference was not evident in the mid-responding
group.
Based on NS-SCR frequency EDA groups, children with ASD were reported by
their parents to have significantly greater dental anxiety compared to TD children in both
the low- and mid-responding groups (LR: t(15)= -2.77, p=.04; MR: t(19)= -3.15, p=.006).
In the children in the high-responding NS-SCR group no significant difference existed in
dental anxiety score as reported by the parent. Likewise, there were more children with
ASD, compared to TD children, described by their parents’ scores as in the “high dental
fear” range in both the low- and mid-responding groups, while no such difference was
found in the high-responding group (LR: t(15)= -2.00, p=.10; MR: t(19)= -3.11, p=.006).
Within-group analyses.
No significant differences were found in dental anxiety score in children with ASD
in the LR, MR, or HR groups or TD children in the LR, MR, or HR groups based on SCL
categorizations. However, a significant difference in dental anxiety score was found
between LR, MR, and HR groups in TD children when using NS-SCR frequency
categorization (F(2)=7.83, p=.004). LR children were reported to have approaching
significant lower dental fear than MR children (t(18)= -1.86, p=.08) and significantly
lower dental fear than HR children (t(11)= -3.72, p=.003); MR children had significantly
141
less dental fear than HR children (t(7)= -2.95, p=.02). No such difference was found
between NS-SCR responsivity groups in children with ASD.
Correlations.
No significant correlation was found between parent-report of child’s dental
anxiety and average SCL during dental cleaning in either TD or ASD groups. However,
a large, significant correlation was found between parent-report of dental anxiety and
average NS-SCR frequency during dental cleaning in TD children (r=.58, p=.006). No
such correlation was found in the ASD group (r=.24, ns).
Distress Behavior during Cleaning: A and C Scale, Frankl Scale, CDBRS
Anxiety and Cooperation Scale.
Between-group analyses.
Using the dentist-report Anxiety and Cooperation Scale to compare children with
ASD and TD children in different SCL responsivity groups, children with ASD in the
high-responder group were scored as having significantly greater uncooperative
behavior during dental cleaning than the TD children in the high-responder group (t(14)=
-4.94, p=.0006). No significant differences existed in the low- or mid-responding groups.
Using NS-SCR frequency responder groups, significant differences were found in
the mean Anxiety and Cooperation score between TD and ASD groups in the MR and
HR groups (MR: t(19)= -2.64, p=.02; HR: t(10)= -4.34, p=.007), with children with ASD’s
behavior scored significantly higher (more uncooperative) than their TD counterparts.
Within-group analyses.
No significant differences were found in Anxiety and Cooperation Scale scores
when comparing children with ASD in the low-, mid-, and high- SCL responding groups,
142
nor when comparing the TD children in the three SCL responsivity groups. However, a
significant difference was found in Anxiety and Cooperation score between LR, MR, and
HR NS-SCR groups in the ASD group (F(2) = 4.62, p=.02). Here the LR group exhibited
less uncooperative behavior as compared to the MR group (t(16)= -2.96, p=.009) and
the HR group (t(7)= -2.24, p=.06); there was no significant difference in behavior
between the MR and HR ASD groups. No significant differences in anxiety and
cooperation score were found in TD children in LR vs. MR vs. HR groups.
Correlations.
No correlation existed between SCL during dental cleaning and the Anxiety and
Cooperation Scale in children with ASD. However, a significant moderate negative
correlation existed between SCL during dental cleaning and the Anxiety and
Cooperation Scale in TD children, indicating that the more uncooperative the behavior
of the TD children (the higher the scale score), the lower the tonic SCL (r= -.44, p<.05).
When investigating the relationship between NS-SCR frequency during dental
cleaning and the Anxiety and Cooperation Scale, a large, significant correlation was
found in the ASD group (r=.58, p=.005); no significant correlation was found between
Anxiety and Cooperation Scale score and NS-SCR frequency in TD children.
Frankl Scale.
Between-group analyses.
Based on SCL responder groups, significant and approaching significant
differences were found between the behavior of children with ASD and TD children, as
scored by the Frankl Scale during dental cleaning in all responder groups, as children
143
with ASD scored lower (less cooperative) than TD children (LR: t(9)=1.92, p<.10; MR:
t(18)=2.55, p=.02; HR: t(10)=3.43, p=.007).
When TD and ASD groups were compared as a function of NS-SCR groups,
there was no significant difference in Frankl Scale score in the LR group. However,
children with ASD had significantly more negative behaviors during dental cleaning,
compared to TD children, in both the MR and HR groups (MR: t(19)=2.75, p=.01; HR:
t(10)=5.48, p=.003).
Within-group analyses.
In the TD group, no Frankl Scale score differences existed in LR:MR:HR children
categorized by either SCL or NS-SCR frequency (all F’s < 1.0). In the ASD group, no
significant differences were found in Frankl score in the LR, MR, and HR groups as
categorized by SCL. However, in the ASD group a significant difference was found
between NS-SCR LR:MR:HR children, with the MR group exhibiting a significantly lower
mean behavior score (more negative behavior) than the LR group (t(16)=2.83, p=.01);
there were no significant differences on behavior score in the ASD NS-SCR LR:HR or
MR:HR groups.
Correlations.
Small, nonsignificant correlations were found between dentist-report of
uncooperative behavior on the Frankl Scale and average SCL during dental cleaning in
both the TD and ASD groups (r’s= .26 and .20, respectively). Likewise, a small,
nonsignificant correlation existed between the Frankl Scale and average NS-SCR
frequency during dental cleaning in TD children (r=.18). In children with ASD, a
significant, moderate negative correlation was found (r= -.47, p=.03), indicating that the
144
higher the NS-SCR frequency in the ASD group, the worse the exhibited behavior
during dental cleaning (the lower the Frankl scale).
Children’s Dental Behavior Rating Scale (CDBRS).
Between-group analyses.
In all three EDA skin conductance level responsivity groups a significant or
approaching significant difference in overt distress behavior was found based on the
Children’s Dental Behavior Rating Scale (CDBRS) when comparing TD and ASD
groups, with children with ASD exhibiting higher CDBRS scores (greater distress
behavior) than their TD counterparts in all SCL responsivity groups (LR: t(9)= -2.07,
p=.07; MR: t(18)= -1.86, p=.08; HR: t(10)= -3.69, p=.006).
Based on responsivity groups formed by NS-SCR frequency, a significant
difference in CDBRS score was found between TD and ASD groups in the high-
responding group (t(10) = -5.91, p=.0008), but not in the low- or mid-responding groups
(LR t(8)= -.75; MR t(19)= -1.54).
Within-group analyses.
No significant difference existed between the three SCL responsivity groups in
relation to CDBRS score in either the TD or ASD groups (F’s<1.0). Likewise, no
significant differences were found in TD children in the NS-SCR LR:MR:HR groups
(F<1.0). An approaching significant difference was found in children with ASD in the
three NS-SCR groups (F(2)=2.83, p=.08), with the low-responder group exhibiting
significantly less distress behavior than the mid-responder group (t(16)= -2.31, p=.003);
no significant differences were found between the LR and HR or MR and HR groups.
145
Correlations.
Only small, non-significant correlations were found between CDBRS score and
mean SCL in both the ASD and TD groups (both r’s= -.21). A small, non-significant
negative correlation was found in the TD group between average NS-SCR frequency
during dental cleaning and CDBRS score while a moderate, approaching significant,
positive correlation was found in the ASD group (r=.36, p<.10). This indicates that, in
the ASD group, the higher the NS-SCR frequency, the higher the distress behavior
score.
146
Table 5.3
Summary Table of Between-Group and Within-Group Analyses for Anxiety and Distress Behavior Variables.
Between group comparison (ASD:TD) Within group comparison (LR:MR:HR)
Low-
Responders
Mid-
Responders
High-
Responders
ASD TD
General Anxiety (higher
score is greater anxiety)
SCL ASD >TD** n.s. ASD >TD ** n.s. n.s.
NS-SCR ASD >TD
†
ASD >TD ** n.s. n.s. n.s.
Dental Anxiety (higher score
is greater dental anxiety)
SCL ASD >TD ** n.s. ASD >TD * n.s. n.s.
NS-SCR ASD >TD * ASD >TD ** n.s. n.s.
MR > LR
†
;
HR > LR**;
HR > MR*
Anxiety and Cooperation
Scale (higher score is more
uncooperative behavior)
SCL n.s. n.s. ASD >TD ** n.s. n.s.
NS-SCR n.s. ASD >TD * ASD >TD **
MR > LR**;
HR > LR
†
n.s.
Frankl Scale (lower score is
more uncooperative
behavior)
SCL TD > ASD
†
TD > ASD * TD > ASD ** n.s. n.s.
NS-SCR n.s. TD > ASD * TD > ASD ** LR > MR* n.s.
Children’s Dental Behavior
Rating Scale (higher score is
more distress behavior)
SCL ASD >TD
†
ASD >TD
†
ASD >TD ** n.s. n.s.
NS-SCR n.s. n.s. ASD >TD ** MR > LR* n.s.
Note: † = p≤.10; * = p≤.05; ** = p≤.01
147
Hypothesis Four
This hypothesis investigated if atypical sensory processing, as measured by
parent report on the Short Sensory Profile, was correlated with EDA during oral care.
Between-group analyses.
Significant differences were found on the total SSP score between children with
ASD and TD children in all responsivity groups (LR: t=6.94, df=9, p=.0008; MR: t=6.30,
df=18, p<.0001; HR: t=4.74, df=10, p=.0009), with parents of children with ASD
reporting greater sensory processing difficulties compared to parents of TD children.
Additionally, when building a model to predict SSP total score, although ASD diagnosis
was significant, neither dental cleaning EDA responsivity group assignment or the
interaction between ASD diagnosis and responsivity group assignment were significant.
This indicates that EDA responsivity group is not a significant predictor of behavioral
sensory processing, as measured by the SSP.
Within-group analyses.
One-way analyses of variance indicated that no significant differences on SSP
score were found among the three EDA responsivity groups in either children with ASD
(F(2)=1.44) or TD children (F(2)<1.0).
Correlations.
No significant correlations existed between total SSP score and SCL during
dental cleaning in the combined (ASD & TD) subject group (r= -.21), the TD group
(r=.05), or the ASD group (r= -.04); see Table 5.4. Likewise, when examining SCL
responder groups, no significant correlations were found between SSP score and SCL
during dental care in the low- or high- responder groups in TD children (r’s= .05 and .00,
148
respectively) or in the low-, mid-, or high-responder groups in children with ASD (r’s=
-.54, -.67, and -.10, respectively; all p’s >.22). A large correlation that approached
significance was found between total SSP score and SCL during dental cleaning in the
middle-responder group in TD children (r=.69, p=.06).
A significant correlation was found between total SSP score and NS-SCR
frequency during dental cleaning in the combined (ASD & TD) subject group (r= -.49,
p=.0009). There was no significant correlation between NS-SCR frequency and dental
cleaning in the TD group, but there was an approaching significant moderate negative
correlation in the ASD group (r= -.35, p=.11). No significant correlations were found
between behavioral sensory processing (SSP score) and NS-SCR frequency during
dental care in the low-responder group in TD children or the low-, middle-, or high-
responder groups in children with ASD. An approaching significant large correlation was
found between total SSP score and NS-SCR frequency during dental cleaning in the
middle-responder group in TD children (r=.61, p= -.11).
However, when analyzing the correlation between sensory processing, as
measured by the SSP, and EDA without dividing children into responsivity groups, we
find that there are some significant or approaching significant correlations between EDA
and the SSP in children with ASD. In children with ASD, correlations were found
between SCL and the Taste and Smell Sensitivity subtest (r= -.38, p=.08) and the Visual
and Auditory Sensitivity subtest (r= -.47, p=.03). Additionally, correlations were found
between NS-SCR frequency and the total SSP score (r= -.34, p=.11), the Taste and
Smell Sensitivity subtest (r= -.34, p=.11), the Auditory Filtering subtest (r= -.41, p=.06),
and the Visual and Auditory Sensitivity subtest (r= -.69, p=.0003). This indicates that, in
149
children with ASD, lower scores on the SSP (indicating the presence of greater sensory
processing difficulties) are correlated with higher EDA (both SCL and NS-SCR
frequency) which indicates greater anxiety and responsivity to stimuli. See Table 5.4.
Table 5.4
Correlations between sensory processing (SSP) and electrodermal activity (SCL and
NS-SCR frequency) during dental cleaning in TD and ASD groups
SSP Total
Score
Taste & Smell
Sensitivity
Auditory
Filtering
Visual &
Auditory
Sensitivity
Average SCL
during cleaning
TD n.s. .36
†
n.s. n.s.
ASD n.s. -.38
†
n.s. -.47*
Average NS-SCR
frequency during
cleaning
TD n.s. n.s. n.s. n.s.
ASD -.34
†
-.34
†
-.41
†
-.69*
Note: † = p≤.11; * = p≤.05
Further analyses were conducted to investigate only children who had total SSP
scores which indicated a “definite” or “probable” difference in sensory processing, based
on normative data (Dunn, 1999). Following analysis of the TD children characterized by
parent report on the SSP to have a “definite” or “probable” difference in sensory
processing (n=8), a significant correlation between both SCL and NS-SCR frequency
with total SSP score (r=.82, p=.01 and r=.79, p=.02, respectively) was found. In the ASD
group, a moderate correlation which approached significance was found between NS-
SCR frequency and total SSP score (r= -.34, p=.12) as well with Taste and Smell
Sensitivity subtest (r= -.34, p=.12), Auditory Filtering subtest (r= -.41, p=.06), and the
Visual and Auditory Sensitivity subtest (r= -.69, p=.0003). When correlating SCL and
150
SSP subtests in the ASD group, correlations were found with the Taste and Smell
subtest (r= =.38, p=.08) and the Visual and Auditory Sensitivity subtest (r= -.47, p=.03).
See Table 5.5.
Table 5.5
Correlations between SSP scores and electrodermal activity (SCL and NS-SCR
frequency) during dental cleaning in children with ASD and TD children with “definite”
and “probable” differences in sensory processing as measured by the Short Sensory
Profile
SSP Total
Score
Taste & Smell
Sensitivity
Auditory
Filtering
Visual &
Auditory
Sensitivity
Average SCL during
cleaning
TD (n=8) .82* n.s. n.s. n.s.
ASD (n=22) n.s. -.38
†
n.s. -.47*
Average NS-SCR
frequency during
cleaning
TD (n=8) .79* n.s. n.s. n.s.
ASD (n=22) -.34
†
-.34
†
-.41
†
-.69*
Note: † = p≤.10; * = p≤.05
Exploratory Analyses
Stability of EDA from baseline to dental cleaning.
Stability of EDA measures from baseline to different dental cleaning phases were
investigated (oral examination, prophylaxis, fluoride application). Upon examination,
SCL throughout the dental cleaning phases had large, significant correlations with each
other, in both the ASD and TD groups (See Table 5.6). When utilizing the NS-SCR
frequency variable, EDA variables in the ASD group had moderate or large significant
correlations during the dental cleaning phases. However, in the TD group, although
moderate and large correlations were found between NS-SCR frequency during most
151
dental cleaning phases, only approaching significance was found for the correlation
between oral examination and fluoride application (See Table 5.7).
EDA scores of children categorized as low-, mid-, or high-responders maintained
similar patterns during dental cleaning and rest period following dental cleaning for both
SCL (see Figure 5.8) and NS-SCR frequency (see Figure 5.9). To see graphic
representation of stability of low-, mid-, and high-responders in TD and ASD groups for
all participants, see Figures 5.10 and 5.11, respectively.
Table 5.6
Correlations of SCL across different phases of dental cleaning in TD and ASD groups.
TD group
ASD group Baseline
Oral
Examination Prophylaxis Fluoride
Baseline
.77** .73** .76**
Oral Examination .92**
.80** .83**
Prophylaxis .91** .98**
.95**
Fluoride .83** .88** .91**
Note. The lower left half of the matrix depicts findings for the ASD group and the upper
right half with italic numbers represent the TD group. * = p≤..05; ** = p≤.001.
Table 5.7
Correlations of NS-SCR frequency across different phases of dental cleaning in TD and
ASD groups.
TD group
ASD group Baseline
Oral
Examination Prophylaxis Fluoride
Baseline
.70** .50* .50*
Oral Examination .84**
.53** .41
†
Prophylaxis .59** .67**
.83**
Fluoride .69** .54* .70**
Note. The lower left half of the matrix depicts findings for the ASD group and the upper
right half with italic numbers represent the TD group. † = p≤.10; * = p≤.05, ** = p≤.01.
152
Figure 5.8. Mean raw SCL over time during dental cleaning in TD and ASD groups, by
SCL responsivity group.
Figure 5.9. Mean NS-SCR frequency over time during dental cleaning in TD and ASD
groups, by NS-SCR responsivity group.
0
1
2
3
4
5
6
7
8
9
10
Baseline Dental Cleaning Post Rest
Raw Skin Conductance Level (μS)
Components of Dental Cleaning
ASD LR
TD LR
ASD MR
TD MR
ASD HR
TD HR
0
2
4
6
8
10
12
14
Baseline Dental Cleaning Post Rest
Non-Specific Skin Conductance
Response Frequency
Components of Dental Cleaning
ASD LR
TD LR
ASD MR
TD MR
ASD HR
TD HR
153
0
4
8
12
Baseline Dental Cleaning Post Rest
Raw Skin Conductance Level (μS)
Components of Dental Cleaning
Figure 5.10. Raw SCL over time in individual TD children characterized by SCL
responsivity group. Colors indicate differing sensory responsivity groups as follows:
red = high-responders, blue = mid-responders, and green = low-responders. Dotted
lines indicate the levels of cut-off between responsivity groups.
154
0
4
8
12
16
Baseline Dental Cleaning Post Rest
Raw Skin Conductance Level (μS)
Components of Dental Cleaning
Figure 5.11. Raw SCL over time in individual children with ASD characterized by SCL
responsivity group. Colors indicate differing sensory responsivity groups as follows:
red = high-responders, blue = mid-responders, and green = low-responders. Dotted
lines indicate the levels of cut-off between responsivity groups.
155
Relationship of SCL and NS-SCR group placement.
Exploratory analyses were also conducted to investigate the relationship
between SCL and NS-SCR frequency responsivity groups; we wanted to find out if
children who were categorized as “low-responders” based on SCL would also be “low-
responders” based on NS-SCR frequency. At baseline, an approaching significant
association was found in TD children based on Fisher’s Exact analyses (p=.08), and a
significant association was found in children with ASD (p=.02); at baseline 62% of TD
children and 68% of children with ASD were placed in the same responder group based
on SCL & NS-SCR frequency (See Table 5.8). During dental care, a significant
association was found between LR:MR:HR categorizations in SCL and LR:MR:HR
categorizations in NS-SCR frequency groups in TD children based on Fisher’s Exact
Analyses (p=.003) and in children with ASD (p=.04); 71% of TD children and 45% of
children with ASD were placed in the same responder group based on SCL & NS-SCR
frequency during dental care. See Table 5.9.
Table 5.8
Agreement between SCL and NS-SCR group assignment in TD children (left) and
children with ASD (right) at baseline. Bold numbers indicate agreement.
ASD SCL Groups
LR MR HR
ASD NS-SCR
Frequency
Groups
LR 3 1 0
MR 1 8 3
HR 1 1 4
TD SCL Groups
LR MR HR
TD NS-SCR
Frequency
Groups
LR 4 1 1
MR 2 6 1
HR 0 3 3
156
Table 5.9
Agreement between SCL and NS-SCR group assignment in TD children (left) and
children with ASD (right) during dental cleaning. Bold numbers indicate agreement.
ASD SCL Groups
LR MR HR
ASD NS-SCR
Frequency
Groups
LR 3 2 0
MR 3 3 7
HR 0 0 4
Change score from baseline to dental cleaning.
Between-group analyses: ASD to TD.
We also investigated if change scores between baseline and dental cleaning
would be significantly different between ASD and TD groups, as well as between
different responsivity groups within each diagnostic group (TD and ASD). A change
score was calculated for each subject by subtracting dental cleaning SCL from baseline
SCL; therefore, a negative change score indicated an increase in EDA from baseline to
cleaning while a positive score reflected a decrease in EDA. A significant difference was
found between mean SCL change from baseline to dental cleaning in children with ASD
(mean=.20) compared to TD children (mean= -.13; t(41)=2.81, p=.008). Children with
ASD’s mean SCL increased from baseline to dental cleaning compared to the TD
group, indicating an increase in physiological stress and anxiety in children with ASD;
the TD group exhibited a mean decrease in SCL, indicating that they became more
relaxed / less responsive to the sensory stimuli they were exposed to from baseline to
dental cleaning.
When examining the NS-SCR frequency change score calculated from baseline
to dental cleaning (dental cleaning NS-SCR frequency subtracted from baseline NS-
TD SCL Groups
LR MR HR
TD NS-SCR
Frequency
Groups
LR 8 2 2
MR 0 6 2
HR 0 0 3
157
SCR frequency), an approaching significant difference was found between children with
ASD and TD children (t(41)=1.90, p=.07), with TD children exhibiting a significantly
larger decrease in NS-SCR frequency (mean=2.91) from baseline to dental cleaning as
compared to children with ASD (mean=1.17).
Between-group analyses: ASD to TD by EDA responsivity groups.
When comparing change scores from baseline to dental cleaning between ASD
and TD groups for each of the SCL responsivity groups, a significant difference was
found between children with ASD and TD children in the mid-responder group
(t(18)=2.76, p=.01). Examination of the change scores indicated that as the ASD mid-
responders’ SCL increased from baseline to dental cleaning and the TD mid-
responders’ showed a decrease. No other significant differences were found between
SCL responsivity groups. See Table 5.10.
When examining change scores from baseline to dental cleaning among the
different NS-SCR responsivity groups, a significant difference was found only between
the TD and ASD groups in the high-responder group (t(10)=2.64, p=.03). Here, the TD
group exhibited a significantly greater decrease in NS-SCR frequency as compared to
children with ASD. This pattern was repeated in both the low- and mid-responder
groups, but not at a significantly different degree. See Table 5.10.
Within-group analyses.
No significant difference was found between SCL change scores from baseline to
dental cleaning among the three responsivity groups in TD children (F(2)=1.85) or
between LR:MR:HR children with ASD (F(2)=.36). Likewise, no significant difference
was found in NS-SCR change score from baseline to dental cleaning in children with
158
ASD categorized into sensory responsivity groups (F(2)=.83). However, a significant
difference was found in NS-SCR change score from baseline to dental cleaning in TD
children characterized into responsivity groups (F(2)=10.69, p=.0009), with the LR
group exhibiting a significantly smaller decrease in change score compared to the HR
group (t(10)= -5.05, p=.0005) and the MR group also exhibiting a significantly smaller
decrease in change score compared to the HR group (t(13)= -3.39, p=.005).
159
Table 5.10
SCL and NS-SCR frequency change scores from baseline to dental cleaning in children with ASD and TD children
categorized into EDA sensory responsivity groups
Low-Responders
Mid-Responders
High-Responders
Change Score
n mean SD
t-
value
p-
value
n mean SD
t-
value
p-
value
n mean SD
t-
value
p-
value
Skin Conductance
Level (SCL)*
TD 6 0.1 0.5
1.08
ns
(.31)
10 0.37 0.4
2.76 0.01
5 -0.03 0.23
0.78
ns
(.45)
ASD 5 -0.23 0.54
10 -0.07 0.3
7 -0.14 0.26
Non-specific Skin
Conductance
Response
frequency
TD 6 0.74 1.13
0.87
ns
(.42)
9 1.75 2.91
0.55
ns
(.59)
6 6.82 2.72
2.64 0.03
ASD 4 0.04 1.3
12 1.14 1.89
6 2.01 3.54
* Based on log(SCL) scores
Note. Change score calculated by subtracting dental cleaning EDA from baseline EDA. Therefore, negative change
scores indicate an increase in EDA from baseline to dental cleaning; positive change scores reflect a decrease in EDA
from baseline to dental cleaning.
160
Magnitude of NS-SCR responses.
We also investigated if the magnitude of NS-SCRs was significantly different
between ASD and TD groups. These larger magnitude responses, such as those
greater than 1µS, indicate a large response to a particularly noxious stimulus. When
examining ASD vs. TD groups, there was no difference between the frequency of NS-
SCRs greater than 1μS at baseline; however, an approaching significant difference was
found between ASD and TD groups during the dental cleaning (t= -1.53, df=41, p=.11),
with children with ASD exhibiting a greater number of these larger amplitude responses.
No significant differences were found between children with ASD and TD children in the
low-, mid-, or high-responder groups in regard to the frequency of NS-SCRs with an
amplitude greater than 1μS per minute during dental cleaning (LR: t=.89, MR: t=.82,
HR: t= -1.04). However, significant differences were found in LR:MR:HR groups in
children with ASD, with the high amplitude NS-SCR frequency exhibited by LR children
smaller than those exhibited by MR children (t(16)= -1.85, p=.08) and HR children (t(7)=
-4.36, p=.003); the ASD MR group also exhibited a significantly lower frequency as
compared to the ASD HR group (t(15)= -3.88, p=.002). Likewise, TD children followed
the same pattern of high amplitude NS-SCR frequency, with LR < MR < HR; LR children
exhibited a lower frequency than MR (t(18)= -2.76, p=.01) and HR children (t(11)= -9.36,
p<.0001) and MR children also exhibited a lower NS-SCR frequency greater than 1 μS
compared to HR children (t(7)= -4.74, p=.002).
Comparison of only low- and high-responding groups.
Lastly, we explored if there were differences when comparing only the low-
responding and high-responding groups to capture details of the extreme responders.
161
When analyzing a combined group of children with ASD and TD children, there were no
significant differences between the SCL low- and high responders in general anxiety,
dental anxiety or uncooperative behavior as measured by the Anxiety and Cooperation
Scale, the Frankl Scale, or the Children’s Dental Behavior Rating Scale (all t(28)’s <
1.0). No significant differences existed when comparing low- and high-responders within
the TD group on general anxiety, dental anxiety or distress behavior as measured by
the Frankl Scale or the CDBRS (all t(11)’s < 1.30); however, there was an approaching
significant difference on the Anxiety & Cooperation Scale, with the TD LR group
exhibiting more uncooperative behavior compared to the TD HR group (t(7)=2.05,
p=.08). There were no significant differences on any anxiety or behavior variables in the
ASD group when comparing the low- and high- responders (all t(15)’s < 1.0).
When comparing NS-SCR frequency low- and high-responders with the
combined ASD/TD group, there were significant or approaching significant differences
in all anxiety and behavior variables – general anxiety, dental anxiety, Anxiety and
Cooperation Scale, Frankl Scale, and CDBRS (See Table 5.11). Examining only TD
children, the only significant difference found between the low- and high-responding
group was on the dental anxiety variable (t(11)= -3.71, p=.003) with the HR group
reported to experience more dental anxiety than the LR group. In the ASD only group,
the only difference between the NS-SCR LR and HR groups was on the Anxiety and
Cooperation Scale, with the HR group exhibiting more uncooperative behavior than the
LR group (t(7)= -2.24, p=.06).
162
Table 5.11
NS-SCR frequency low- versus high-responder comparisons
Measure Group n mean SD t-value p-value
General
Anxiety
(CASI-Anx)
Combined
Low-Responders 17 9.4 9.2
-2.05 0.05
High-Responders 5 19.4 11
TD
Low-Responders 12 6.5 7.3
< 1.0 n.s.
High-Responders 1 4 n/a
ASD
Low-Responders 5 16.4 10.3
-1.1 n.s.
High-Responders 4 23.3 7.8
Dental
Anxiety
(CFSS-DS)
Combined
Low-Responders 17 26.5 11.7
-3.07 0.06
High-Responders 5 44.4 10.5
TD
Low-Responders 12 21.3 5.9
-3.72 0.003
High-Responders 1 44 n/a
ASD
Low-Responders 5 38.8 13.6
< -1.0 n.s.
High-Responders 4 44.5 12.1
Anxiety and
Cooperation
Scale
Combined
Low-Responders 17 0.5 0.9
-2.21 0.04
High-Responders 5 1.6 1.3
TD
Low-Responders 12 0.5 0.9
< 1.0 n.s.
High-Responders 1 0 n/a
ASD
Low-Responders 5 0.5 0.9
-2.24 0.06
High-Responders 4 2 1.2
Frankl Scale
Combined
Low-Responders 17 3.5 0.7
2.66 0.02
High-Responders 5 2.6 0.5
TD
Low-Responders 12 3.6 0.7
< 1.0 n.s.
High-Responders 1 3 n/a
ASD
Low-Responders 5 3.4 0.9
1.73 n.s.
High-Responders 4 2.5 0.6
Children's
Dental
Behavior
Rating Scale
Combined
Low-Responders 17 7 4.6
-2.26 0.04
High-Responders 5 12.6 5.9
TD
Low-Responders 12 6.6 4.2
< 1.0 n.s.
High-Responders 1 6 n/a
ASD
Low-Responders 5 8 5.9
-1.65 n.s.
High-Responders 4 14.3 5.3
163
DISCUSSION
This study investigated the physiological responsivity in children with ASD and
TD children to a routine dental cleaning, a multi-sensory and probable noxious
experience as well as examined the relationship between physiological and behavioral
stress and anxiety.
The hypothesis which stated that children with a diagnosis of ASD would show a
greater prevalence of sensory over-responsivity and under-responsivity at baseline EDA
and during dental cleaning, as compared to TD children, was not supported. No
significant differences between TD and ASD groups were found based on either SCL or
NS-SCR frequency physiological measures. Past literature has indicated that children
with ASD may present in a physiologically heterogeneous manner, with some children
with ASD exhibiting atypically high (Barry & James, 1988; Palkovitz & Wisenfeld, 1980)
and others atypically low levels of SCL and skin conductance responses (Miller et al.,
2001; Schoen et al., 2009). Therefore, children were categorized into sensory
responsivity groups in order to investigate if differing patterns of EDA within each group
were obfuscating results. Surprisingly, when characterized into low-, mid-, and high-
responding groups, no significant differences were found between children with ASD
and TD children in each category when examining arousal at rest, both by SCL and NS-
SCR frequency. This presence of high- and low-responsiveness in the ASD population
was found in this study, but was not significantly different than the EDA patterns
exhibited by the TD group.
When analyzing the differences between diagnostic groups as a function of EDA
responsivity level during the dental cleaning, either by SCL or NS-SCR frequency,
significant differences were only found in the mid-responder group, with children with
164
ASD exhibiting significantly higher SCL and greater NS-SCR frequency than their TD
counterparts. Although the test for a significant mean difference of EDA between
children with ASD and TD children in the low- and high-responsivity groups during
dental cleaning was not significant, this may be due chiefly to the relatively large
variances of the ASD group. However, the skin conductance level during dental
cleaning in both the low- and high-responder groups was greater in the ASD group than
in the TD group, indicating a trend. These findings do not support past studies which
report that children with ASD exhibit either atypically high responsivity or atypically low
responsivity to stimuli (Barry & James, 1988; Miller et al., 2001; Palkovitz & Wisenfeld,
1980; Schoen et al., 2009); these previous studies would suggest that children in the
ASD high-responder group would exhibit higher means than TD peers and those in the
low-responding group would exhibit lower means than their TD peer. In this study, in all
EDA responsivity groups, children with ASD exhibited higher SCL and NS-SCR
frequency as compared to TD children in the same responsivity group, suggesting that
children with ASD are more likely to exhibit higher physiological stress and anxiety
during dental cleaning. This tendency toward higher SCL and NS-SCR frequency in the
ASD group was supported by a small, approaching significant correlation between SCL
and ASD diagnosis and a moderate, significant correlation between NS-SCR frequency
and ASD diagnosis. The different finding may be due to the multisensory and interactive
environment the child experienced during dental cleaning, as previous studies have
focused on the physiological response to the passive presentation of one sensory
stimulus at a time.
165
Rate of NS-SCR frequency does not address the question of the amplitude of
those NS-SCRs. In this study, any skin conductance response above .05µS was
counted as a NS-SCR, a commonly used minimum amplitude (Dawson et al., 2007).
Skin conductance response amplitudes are typically between .1 and 1.0 µS in response
to stimuli (Dawson et al., 2007). Larger amplitude responses, such as those greater
than 1µS, indicate an extremely large response to a noxious stimulus. Following
analysis, children with ASD were found to exhibit more of these large amplitude
responses than TD children at a level that approached significance. This finding
indicates that during dental cleaning, although the ASD group was responding
physiologically at the same frequency as TD children, the magnitude of those responses
were not the same, indicating a potentially more stressful and anxiety-producing
experience for those children on the Autism spectrum. This difference in mean NS-SCR
responses greater than 1µS was not present when analyzing the baseline EDA
measurements between TD and ASD groups, indicating the magnitude of responses
was, in fact, due to the experience of the dental cleaning. These results are supported
by previous studies that found that children with ASD exhibited significantly larger
amplitude responses to the presentation of stimuli in one modality (e.g., an auditory
tone), as compared to TD children and children with intellectual disabilities (Barry &
James, 1988; Chang et al., 2012; James & Barry, 1984).
Additionally, when examining TD and ASD groups without EDA responsivity
categorization, a significant difference was found in skin conductance level as it
changed from baseline to dental cleaning. Here, the ASD group exhibited a significantly
greater change from baseline to dental cleaning compared to the TD group, indicating
166
increased physiological anxiety and stress and possibly greater fear (Dawson et al.,
2007). This supports the above findings that indicate that the physiological experiences
of children with ASD and TD children are different in the dental environment.
The hypothesis stating that children with ASD would exhibit greater general and
dental anxiety and distress behavior during dental care, compared to TD children, was
partially supported. In regard to general and dental anxiety, children with ASD in the
low- and high- SCL responder groups exhibited higher anxiety than TD children in those
groups; children with ASD in the mid- and high- NS-SCR responder groups exhibited
higher anxiety than TD children in the corresponding groups. Overall, children with ASD
exhibited greater overt distress behavior, as measured by dentist- and researcher-report
measures (Frankl Scale and CDBRS), than TD children in all sensory responsivity
groups. This finding is consistent with numerous studies that have noted that children
with ASD exhibit greater negative and uncooperative behavior in the dental office as
compared to TD children (Loo et al., 2008; 2009; Stein et al., 2012).
Significant correlations were found between EDA (NS-SCR frequency) and overt
behavioral distress measures in the ASD group, indicating that a relationship exists
between these constructs, with the higher the exhibited NS-SCR frequency, the greater
the overt distress behavior. Interestingly, however, there were only significant ASD
within-group differences between the NS-SCR responsivity groups on the dentist-report
measures of the Anxiety and Cooperation Scale and Frankl Scale, with mid- and high-
responders exhibiting more negative behavior as compared to the low-responders. This
makes intuitive sense as past research indicates that children with over-responsive
nervous systems respond to stimuli with exaggerated or aversive responses (Tomchek,
167
2010) and that increases in EDA variables are well-documented to increase during
stressful or painful situations (Dawson et al., 2000, 2007; Hugdahl, 1996). Likewise,
when looking at the lower range of responsivity (low-responders), we found that children
with ASD with lower physiological responding exhibit less overt uncooperative behavior.
However, further research into these low-responders may be needed. Although it
is logical that the low-responding ASD group exhibited less overt distress behavior than
the high-responder group, some researchers hypothesize that over-responsive children
with ASD may experience overstimulation from sensory stimuli leading to a shutdown
and non-responding to subsequent stimuli (Kimball, 1999; Lane, 2002; van Engeland,
1984). This is sometimes referred to as a “paradoxical reaction”, and refers to an
abnormal inhibition of responses that acts as a defensive strategy in order to protect
humans who are overloaded or overwhelmed by sensory stimulation (van Engeland,
1984). This theory provides an alternative explanation for why less overt distress
behavior was exhibited by children with ASD with lower EDA during dental cleaning and
warrants further study.
The hypothesis which examined if atypical sensory processing, as measured by
parent-report on the Short Sensory Profile, would be correlated with EDA during oral
care was partially supported. When investigating the combined ASD and TD groups, a
significant negative correlation was found between NS-SCR frequency and SSP score.
This indicates that the lower the total SSP score (the greater the sensory processing
dysfunction), the higher the NS-SCR frequency. Likewise, there was an approaching
significant correlation between NS-SCR frequency in children with ASD and SSP score,
168
but no such correlations were found in the TD group or in the ASD group when
comparing SCL and SSP score.
According to the NIDCR (2004), tactile, gustatory, visual and auditory sensory
sensitivities may be especially problematic in the dental environment. In this study,
behavioral indicators of sensory processing difficulties in each of these modalities,
except tactile, as measured by parent-report on the Short Sensory Profile, was
significantly or approaching significantly negatively correlated to measures of EDA
during the dental cleaning in children with ASD. This finding indicates that the lower the
score on the subtest (the greater the sensory processing dysfunction), the higher the
EDA score. Surprisingly, the Tactile Sensitivity subtest was not correlated with either
SCL or NS-SCR frequency during dental cleaning. This may be due to this subtest’s
focus on overall body tactile sensitivity as opposed to specific face and mouth
sensitivity. For instance, questions on this subtest included: expresses distress during
grooming (haircutting, fingernail cutting), prefers long-sleeved clothing when it is warm
or short sleeves when it is cold, avoids going barefoot, has difficulty standing in line or
close to other people, etc.
The correlation between the total SSP score and EDA variables in TD children
who scored in the definite difference or probable difference range on the SSP was in the
positive direction. This means that the higher the physiological anxiety and stress (EDA
variables), the more typical the sensory processing of the child (higher SSP score). This
is contradictory to past research where behavioral measures of sensory processing
were associated with physiological EDA measures of sensory processing difficulties
(McIntosh et al., 1999; Miller et al., 2001). A potential explanation is that behavioral
169
responses to sensory stimuli in the typical day-to-day environment are not correlated
with physiological sensory processing in the dental environment. However, as the SSP
is a parent-report measure, it may also indicate that parents of TD children may be
more reluctant to mark that their children participate in or avoid certain stimuli; they also
may not notice this type of sensory seeking or sensory avoiding as often as parents of
children with ASD.
Investigating sensory responsivity over different time periods at the dental office
in our exploratory analyses yielded unexpected results. It was anticipated that EDA
variables would increase from baseline to dental cleaning in each responsivity group,
indicating an increase in sympathetic activation during the stressful and anxiety-
producing dental cleaning in children with ASD, as well as in TD children, although to a
lesser degree. However, as seen in Figures 5.8-5.11, this was not the case. Instead, we
see a remarkable consistency within the low-, mid-, and high-responding group means
throughout the dental cleaning.
Conversely, when all responsivity groups were combined, children with ASD and
TD children had significantly different physiological experiences to the dental cleaning.
While the mean skin conductance level of children with ASD increased from baseline to
dental cleaning, indicating an increase in stress and anxiety, the mean of typically
developing children’s skin conductance level decreased, suggesting a decreased
sympathetic response and a habituation to the stimuli experienced during the dental
cleaning.
Also noteworthy is that NS-SCR frequency during dental cleaning shows larger
and more consistent correlations with the variables investigated in this study as
170
compared to SCL. Significant correlations with NS-SCRs included: behavioral reports of
sensory processing difficulties (measured by the SSP), ASD diagnosis, as well as overt
negative behaviors as measured by both parent- and researcher-report. Although tonic
SCL and NS-SCR frequency are generally accepted as being highly correlated (Dawson
et al., 2007) and were found to be highly correlated in this study as well, relationships
between NS-SCR frequency and other variables were found when there were none
between SCL and variables. This decoupling of SCL and NS-SCR frequency has been
reported before; for example, Dawson et al. (2010) found that SCL for patients with
schizophrenia was higher during before a psychotic relapse as compared to following,
but NS-SCR frequency did not discriminate between the two time periods.
Limitations
This study had a number of limitations. The biggest limitation was the small
number of subjects, which was expected as this was a pilot study; this lack of power
was especially challenging when further dividing TD and ASD groups into three EDA
responder groups. Second, due to the small sample size, this study was subject to Type
I or Type II errors. To address this, we utilized a significance level of .05 but examined
any results with a p-value ≤.10; we did not conduct any adjustments for multiple
comparisons because this research was exploratory in nature. Third, the scores of the
children in both groups, but especially the ASD group, varied largely, making it difficult
for statistical tests to capture a differences. Fourth, great care was taken to make the
parents and children in both the TD and ASD groups feel comfortable in the dental
environment prior to the baseline recording so they would accept the application and
continued presence of electrodes on their fingers during the dental cleaning. This
171
introduction to the dental environment possibly helped children feel safe and relaxed
during electrode application, which may have resulted in lower levels of EDA for both
groups. Lastly, our study relied on parent-report measures to obtain information about
our participant’s general anxiety, dental anxiety, and sensory processing difficulties.
Although there are certain limitations to parent-report measures, many human
development researchers rely on this type of data for empirical understanding of key
phenomena (Selfer, 2005).
Conclusion
1. No significant differences exist between the distribution of children with ASD and
TD children into EDA responsivity groups during baseline measures.
2. Higher SCL during dental cleanings, indicating increased physiological stress
and anxiety, was correlated with the presence of ASD.
3. Higher NS-SCR frequency during dental cleanings, indicating increased
physiological stress and anxiety, was correlated with ASD diagnosis, parent-
report of child’s dental anxiety in the TD group, dentist-report of uncooperative
behavior (as measured by both the Anxiety and Cooperation Scale as well as the
Frankl Scale) in the ASD group, distress behavior as measured by the video-
coding CDBRS in the ASD group, and parent-report of sensory processing
difficulties in their child.
4. From baseline to dental cleaning, children with ASD experience a significantly
greater increase in SCL, compared to TD children, indicating an increase in
physiological stress and anxiety.
172
5. EDA measurements within responsivity groups maintain stability over the dental
cleaning, with very little variation in means for different components of the dental
cleaning (e.g., oral examination, prophylaxis, fluoride application).
6. NS-SCR frequency may be a more sensitive measure for investigating
physiological sensory responsivity during stressful situations than SCL in children
with ASD.
173
CHAPTER SIX: CONCLUSIONS
These three studies were conducted to investigate the challenges children with
Autism Spectrum Disorders experience during oral care. Oral care is an important
component of pediatric health care. Poor oral health and the diseases that may result
from it can lead to difficulties with eating, speech impediments, pain, sleep
disturbances, missed days of work or school and decreased self-esteem, causing a
negative effect on one’s health and quality of life (Casamassimo, 1996; HHS, 2000;
Owens et al., 2006). However, despite the importance of oral care, disparities exist for
children with special health care needs in the access to and practice of oral care in the
United States, with oral care being the most frequently cited unmet health care need
(CAHMI, 2011a; Davis, 2009, Lewis et al., 2005; Lewis, 2009; Newacheck et al., 2000a;
2000b).
The first two studies consisted of the development of a survey examining home
and professional oral care which was disseminated to parents of children with Autism
Spectrum Disorders (ASD) and parents of typically developing (TD) children (the
“Dental Care in Children” Survey). The third study investigated the physiological arousal
and sensory responsivity exhibited in children with ASD and TD children in the dental
environment in order to ascertain potential links to personal characteristics and/or overt
behaviors of children.
Study One
The identification of potential barriers to treatment is essential in order to improve
the oral health of children with ASD. Previous studies have described the uncooperative
behavior of children with ASD, what factors (e.g., communication level, inability to sit for
174
a haircut, partially or not toilet trained at 4 years or later) are associated with that
behavior, and strategies for managing uncooperative behavior, but have not
investigated specifically what about oral care is challenging (Loo et al., 2008; Loo et al.,
2009; Marshall et al., 2007; Marshall et al., 2008). By understanding the obstacles to
aspects of oral care this population faces (e.g., in the home, during professional
services, while trying to access to care), dentists and other health care professionals
can work to minimize the difficulties encountered by children with ASD and their
families. In the first study, we conducted a survey of parents of TD children and parents
of children with ASD to describe the differences in home oral care, professional oral
care, and access to professional oral care encountered by these two groups of children.
Hypotheses included:
Hypothesis 1: Significantly more parents of children with ASD will report
difficulties with oral care in the home, in comparison to parents of TD
children (e.g., difficulty with toothbrushing on a daily basis, dislike of taste
and/or texture of toothpaste, dislike of feeling of toothbrush in mouth).
Hypothesis 2: Significantly more parents of children with ASD will report
difficulties with oral care at the dentist’s office in comparison to parents of
TD children (e.g., moderately-extremely difficult to have dentist clean child’s
teeth, uncooperative behaviors increase at dentist, use of restrain often or
almost always used).
Hypothesis 3: Significantly fewer parents of children with ASD, as compared to
parents of TD children will report that their child has had two or more routine
dental visits in the past 12 months; significantly more parents of children
with ASD will report difficulties accessing professional oral care, in
comparison to parents of TD children.
Data obtained from the Dental Care in Children Survey, constructed for this
study, supported the first two hypotheses. Significantly more parents of children with
ASD reported difficulties with oral care in the home and in the dental office, as
compared to parents of TD children. For example, more parents of children with ASD
175
indicated that, in the home, toothbrushing was difficult, their child disliked the
taste/texture of toothpaste as well as the feeling of the toothbrush in his or her mouth. At
the dental office, parents reported that it was moderately-extremely difficult to have a
dentist clean their child’s teeth, the last dental experience was negative, and the child
would be afraid or extremely afraid to go the dentist. Additionally, significantly more
parents of children with ASD, relative to parents of TD children, stated that
uncooperative behaviors, sensory sensitivities, and self-stimulatory behaviors increased
at the dental office and that these responses to dental cleanings discouraged regular
dental check-ups. The third hypothesis was only partially supported. There was no
significant difference in the number of parents who stated that their child had received
two or more routine dental visits in the past 12 months in each group; however,
significantly more parents of children with ASD reported difficulties accessing
professional oral care, in comparison to parents of TD children.
Study Two
The second study was designed to better understand possible sensory
contributions to difficulties with oral care. Sensory processing difficulties have been
found in 69-95% of children with ASD and in 5-13% of TD children (Ahn et al., 2004;
Baker et al., 2008; Baranek et al., 2008; Ben-Sasson et al., 2009a; Leekam et al., 2007;
Tomchek & Dunn, 2007); therefore, sensory difficulties have the potential to impede oral
care in both populations. Numerous articles in the dental literature comment on the
sensory difficulties experienced by children with ASD and the role they may play in
negative dental experiences (Friedlander et al., 2003; Green & Flanagan, 2008; Lyons,
2009; Marshall et al., 2008; NIDCR, 2004; Stein et al., 2011; Stein et al., 2012a),
176
Waldman et al., 2008). However, these articles rarely focus empirically on the
relationship between sensory processing difficulties and oral care difficulties. Therefore,
in this study the Dental Care in Children Survey was employed to investigate whether
the presence of sensory processing difficulties, specifically sensory over-responsivity,
was associated with oral care difficulties in the home and dental office. Additionally,
qualitative data obtained from a focus group of parents of children with ASD was
examined to support or refute the quantitative survey findings. Hypotheses included:
Hypothesis 1: Significantly more parents of children with ASD will report
moderate to extreme oversensitivity on each of the sensory modalities
(touch, oral, taste, smell, sound, vibration, movement, light), in comparison
to parents of TD children.
Hypothesis 2: Significantly more parents of children with ASD will report
moderate to extreme oversensitivity on three or more (of eight) sensory
modalities, characterizing their child as a Sensory Over-Responder, in
comparison to parents of TD children.
Hypothesis 3: Significantly more parents of children with ASD categorized as
Sensory Over-Responders will report difficulties with oral care in the home,
in comparison to parents of children with ASD categorized as Sensory Not
Over-Responders.
Hypothesis 4: Significantly more parents of children with ASD categorized as
Sensory Over-Responders will report difficulties with professional oral care
(oral care at the dentist’s office), in comparison to parents of children with
ASD categorized as Sensory Not Over-Responders.
First, we analyzed parent-report information regarding children’s sensory over-
responsivity to different sensory modalities (touch, oral, taste, smell, sound, vibration,
movement, light) and found that 50% percent or more of the parents of the ASD group
reported moderate-to-extreme oversensitivity to each sensory modality, significantly
more than the TD group. In order to understand the presence of sensory over-
responsivity in a typically developing population, we analyzed the TD group alone and
177
found that only 15% of children were moderately-to-extremely oversensitive to three or
more of the eight sensory modalities. Utilizing this information (selected because 15%
typically represents one standard deviation from the mean), we created a cut score to
dichotomize children as either “Sensory Over-Responders” (SORs) or “Sensory Not
Over-Responders” (SNORs).
All four hypotheses were supported. Significantly more parents stated that their
child with ASD was over-responsive to sensory stimuli encountered in daily life, in
comparison to parents of TD children; therefore, significantly more children with ASD
were categorized as Sensory Over-Responders in comparison to TD children.
Additionally, children with ASD categorized as Sensory Over-Responders were reported
to experience more difficulty with both home and professional dental care, as compared
to children with ASD who were categorized as Sensory Not Over-Responders.
Responses to open-ended questions during the focus group supported these findings.
Study Three
The third study utilized data obtained from subjects participating in a larger-scale
National Institute of Dental and Craniofacial Research funded R34 study, the Sensory
Adapted Dental Environments to Enhance Oral Health in Children with Autism Spectrum
Disorders Study (the SADE study; 1R34DE022263-01). In it we examined patterns of
electrodermal activity (EDA), a physiological measure of arousal and sensory
responsivity, exhibited by children with ASD and TD children as well as the relationship
of EDA to personal characteristics of children (e.g., general anxiety, dental anxiety) and
overt distress behavior exhibited during dental cleaning. EDA is a measure of
physiological response to sensory stimuli, especially those that are emotional or
178
stressful, which increases when the sympathetic “fight or flight” nervous system is
activated (Dawson et al., 2000; Hugdahl, 1995). In this study EDA was utilized in order
to measure physiological stress and anxiety in response to the potentially noxious
experience of dental cleaning. Hypotheses for this third study included:
Hypothesis 1: Children with a diagnosis of ASD will show a greater prevalence of
electrodermal over- and under-arousal at baseline as well as EDA sensory
over-responsivity and under-responsivity during dental cleaning, compared
to EDA patterns shown by typical children.
Hypothesis 2: Children with ASD will exhibit significantly greater general and
dental anxiety as well as significantly greater distress behavior during dental
care, compared to typically developing children in the same EDA sensory
responsivity group (low, mid-range, high).
Hypothesis 3: ASD diagnosis, general anxiety, dental anxiety and greater
difficulty tolerating dental care will be correlated with EDA during oral care.
Hypothesis 4: Atypical sensory processing, as measured by parent-report on the
Short Sensory Profile, will be correlated with EDA during oral care.
We found that it is feasible to utilize electrodermal activity to examine arousal
and sympathetic response during oral care for both children with ASD and TD children.
In this third study, we first examined the EDA (skin conductance level, SCL, and non-
specific skin conductance frequency, NS-SCR) of the TD and ASD groups. Following
these between-group analyses, we categorized our participants into low-, mid-, and
high-responding groups. This was done because previous research has suggested a
two-group pattern of children with ASD with some exhibiting sensory over-responsivity
while others exhibit under-responsivity (Brett-Green et al., 2004; Hirstein et al., 2001;
Palkovitz & Wisenfeld, 1980; Schoen et al., 2008b; van Engeland, 1984). To create
these three EDA responsivity groups, we split the EDA variables (SCL and NS-SCR
frequency) of the typically developing group during baseline into quartiles, with the
179
lowest quartile considered low-responders (0-24%), the highest quartile labeled high-
responders (76-100%) and the middle 50% of the TD sample (25-75%) considered to
be mid-responders. The cut-offs for the TD low-, mid-, and high-responders were then
applied to the ASD EDA scores to create comparable groups for analyses. This was
done to examine if there were differences in these three EDA responsivity groups when
comparing children with ASD and TD children as well as if these groups were correlated
with ASD diagnosis, anxiety, sensory processing, and overt distress behavior.
Overall, the findings of this study were complex. Although no significant
differences were found in the distribution of children with ASD and TD children into EDA
responsivity groups (low-, mid-, and high-) at baseline, a trend towards higher EDA
(both skin conductance level and frequency of non-specific skin conductance
responses) existed in children with ASD in all three EDA responsivity groups compared
to the TD children. No significant results were found consistently when comparing the
TD and ASD responsivity groups with each other, nor when correlating those groups
with anxiety, sensory processing, or overt distress behaviors during oral care.
When comparing the ASD group with the TD group as a whole (not separated
into three responsivity groups), significant differences were found on a number of
variables. For example, from baseline to dental cleaning, children with ASD exhibited a
mean increase in skin conductance level while TD children’s mean SCL decreased.
This suggests that while children with ASD responded to dental cleaning with
physiological stress and anxiety, TD children exhibited a decreased sympathetic
response and habituation to the stimuli experienced during dental cleaning. Additionally,
increased NS-SCR frequency during dental cleaning, which suggests increased
180
physiological stress and anxiety, was correlated with dentist- and researcher-report of
overt distress behavior during dental cleaning and parent-report of behavioral sensory
processing difficulties in children with ASD.
Summary
Together, the results of these three studies enhance our knowledge of the
experiences of children with ASD during oral care. The first study identified the barriers
experienced by children with ASD during oral care in the home and dental office, as well
as in accessing professional dental services. These results are consistent with previous
studies which state that children with ASD have difficulty accessing services and
cooperating with dental care (Brickhouse et al., 2009; Loo et al., 2008; 2009; Marshall et
al., 2007; 2008), but add greater detail as to what aspects of oral care are of greater
difficulty for children with ASD compared to TD children. For example, significantly more
parents of children with ASD reported difficulty with their child’s oral care
(toothbrushing) on a daily basis, reported that their child required physical assistance
with toothbrushing, and stated that they would like more information regarding care in
the home as compared to parents of TD children. This information about barriers to
home oral health suggests that parent education programs designed to address these
difficulties may be helpful in improving home oral health. Likewise, significantly more
parents of children with ASD indicated that their child disliked or complained about the
sensory aspects of the dental cleaning or environment (e.g., bright lights, loud sounds,
instruments in mouth, leaning back in chair, smells); this supports our supposition that
further research into the role sensory sensitivities may play in oral care difficulties is
needed. This was explored in the second and third studies of this dissertation.
181
The second study is one of the first empirical studies to investigate the
relationship between sensory sensitivities and difficulty with oral care in the home and
dental office, as measured by parent reports of child behavior. It is understood that
children with ASD experience greater difficulty with oral care, which the first study
supported (e.g., extremely difficult to complete cleaning, more use of restraint for
cleaning, negative experience in dental office), and that children with ASD experience
sensory processing difficulties more frequently than typically developing children
(Baranek et al., 2007; Ben-Sasson et al., 2009b), which this study supported. The
unique contribution of the second study is the amalgamation of these two statements,
with data indicating that of the children with ASD, those whom parents reported were
over-responsive to sensory stimuli were also reported to experience significantly more
difficulty with dental prophylaxis, require restraint for prophylaxis, and have parents rate
their dental experience as negative, as compared to other children with ASD that were
not perceived by their parents to be over-responsive to sensory stimuli. These findings
imply that although there are likely many variables that contribute to oral care difficulties
in this population, sensory sensitivities are associated with the quality of the oral care
experience. The results are significant because they open the door for new treatment
techniques that can address the impact sensory stimuli may have on oral care, instead
of solely relying on behavioral management techniques (AAPD, 2011-12a).
The third study examined the sympathetic physiological response to dental
cleaning in children with ASD and TD children. The presence of differing EDA patterns,
with more children with ASD exhibiting electrodermal low- and high-responding
compared to TD children was not found; this contradicts some previous studies (van
182
Engeland, 1984; Schoen et al., 2008b) and is consistent with others (Stevens &
Gruzelier, 1984). These findings may be due to small sample size, Type II error, a lack
of differing EDA patterns in this study’s participants, or that this type of EDA distribution
is not commonly found when comparing ASD and TD groups. However, the results are
interesting nonetheless. For instance, children with ASD experienced a mean increase
in skin conductance level from baseline to dental cleaning, indicating a physiological
increase in stress and anxiety which was not found in the TD group who exhibited a
mean decrease in skin conductance level. Additionally, few studies exist which
investigate the relationship between behavioral and physiological measures of sensory
processing in children with ASD, and their findings have been inconsistent (Chang,
2009; Schoen et al., 2009). This study contributes to that body of literature, finding a
significant correlation between the Short Sensory Profile, a parent-report behavioral
measure of sensory processing, and non-specific skin conductance response frequency
during dental cleaning (the higher the NS-SCR frequency, the greater the sensory
processing difficulties reported by the parent). Additionally, non-specific skin
conductance response frequency was also positively correlated with dentist- and
researcher-report of overt distress behavior during the dental cleaning in children with
ASD. This supports Dunn’s Model of Sensory Processing which suggests that some
people require less intense or less frequent stimulation to excite the nervous system
and elicit a behavioral response (Brown et al., 2001; Dunn, 2001), which is often an
exaggerated or aversive response to that stimuli (e.g., vocal outbursts, aggressive
behaviors, tantrums; Tomchek, 2010).
183
Ultimately, these studies provide preliminary data indicating that children with
ASD experience many barriers to oral care in the home and dental office and that many
of these barriers are associated with parent-report of child sensory sensitivities;
likewise, an increase in the sympathetic “fight or flight” response is correlated with
parent-report of sensory processing difficulties as well as overt behavioral distress
during dental cleaning in children with ASD (these correlations were not found in the TD
group). These findings provide a platform to encourage future research in regard to the
relationship between electrodermal activity, sensory processing, and oral care and
support the development of innovative treatment techniques that address the sensory
characteristics of the dental experience.
Implications for Occupational Science and Occupational Therapy
According to the Occupational Therapy Practice Framework, oral care is an
activity of daily living (ADL; AOTA, 2008), within the scope of occupational therapy
services for people with Autism Spectrum Disorders (AOTA, 2010). Sensory processing
has long been of interest to both occupational therapists and occupational scientists,
and we are uniquely qualified to address sensory processing difficulties as they relate to
oral health.
There are numerous ways occupational scientists and occupational therapists
can address oral health disparities. For instance, the first study in this dissertation
added to the understanding of the challenges and barriers children with ASD face in
regard to oral care. Parents reported difficulty with toothbrushing in the home as well as
finding dentists willing to treat their children. Therefore, families of these children need
education regarding techniques and strategies to provide and teach oral hygiene in the
184
home. Similarly, dentists need additional training in providing care for children with ASD,
helping them to understand that although every child with ASD may present as unique,
there are certain techniques and strategies which may be more (or less) successful with
this population (e.g., use of routine, less reliance on communication and more use of
“showing” what will happen during dental cleaning, preparing children for care with
social stories or picture schedules). This is already underway at the University of
Southern California, as Dr. Sharon Cermak and I have provided one three-hour lecture
on oral care and ASD to dental residents for the last three years.
Likewise, information from the second study indicates that sensory sensitivities
are associated with uncooperative behavior in the dental environment and data from the
third study suggests that measures of overt distress behavior are correlated with levels
of sensory responsivity, as measured by electrodermal activity. These distress
behaviors during oral care create challenges for the child, parent, as well as the dentist.
If we can minimize noxious sensory stimuli by altering the sensory characteristics of the
dental environment, we may have the potential to decrease uncooperative behaviors
and improve the dental experience. Additionally, sensory processing difficulties are not
limited to children with ASD, but have been found in typically developing populations as
well as other children with special health care needs (e.g., developmental delay,
attention deficit/hyperactivity disorder, Fragile X Syndrome, Fetal Alchol Spectrum
Disorder; Ahn et al., 2004; Baranek et al., 2007, 2008; Ghanizadeh, 2008; Leekam et
al., 2007; Wengel et al., 2011). Utilizing the Person-Environment-Occupation Model
(Stewart et al., 2003), we can provide therapy to children to decrease sensory
sensitivities, we can alter the dental environment, or we can make adaptations to the
185
task. Further research into these techniques and their application to oral care by
occupational scientists and occupational therapists is necessary and has enormous
potential to improve oral care experiences for children with sensory processing
difficulties, such as those with ASD.
Additionally, the utilization of electrodermal activity to investigate sympathetic
activation has implications for other, non-dental related environments such as
classrooms, therapy sessions, and day-to-day life at home; additionally, this technology
may be useful in testing theoretical relationships, such as that between arousal and
over-responsivity. New wireless EDA equipment has recently been made available by
companies such as Affectiva, Inc. in which EDA data is collected by a small wireless
electronic device with two dry electrodes that fit in a strap and can be worn around the
palm, wrist or ankle (Affectiva, Inc., 2012b). This type of wireless technology would be
ideal for measuring EDA in real world situations as participants would not have to sit
still, have electrodes attached to their body, or be in an artificial laboratory environment.
Although the company states that this technology is currently in use in multiple studies
investigating EDA in children with ASD (Affectiva, Inc., 2012a; Affectiva, Inc., 2012b;
Picard, 2009, 2012), the equipment has yet to be validated on children, including
children with ASD. The validation and future utilization of this type of technology would
be well suited for occupational scientists working as part of an interdisciplinary team.
Ultimately, findings from these studies and related research may lead to new
potential therapeutic techniques and programs, which can be created and studied by
occupational scientists as part of an interdisciplinary team and implemented by
occupational therapists. Due to the oral health disparities that currently exist in children
186
with ASD and other children with special health care needs, these techniques will have
public health implications and may help to make significant advances in making oral
care less anxiety-producing and less expensive as well as safer, more efficient, and
faster, improving the quality of life for children with ASD, their families, and the
practitioners who work with them. Additionally, the use of electrodermal activity as a
way to measure arousal, sensory responsivity, and sympathetic “fight or flight” response
can be utilized in future research in many different populations and in numerous
different environments.
187
REFERENCES
Aartman, I.H.A., van Everdingen, T., Hoogstraten, J., & Schuurs, A.H.B. (1996).
Appraisal of behavioral measurement techniques for assessing dental anxiety
and fear in children: A review. Journal of Psychopathology and Behavioral
Assessment, 18, 153-171.
Aartman, I.H.A., van Everdingen, Hoogstraten, J., & Schuurs, A.H.B. (1998). Self-report
measurements of dental anxiety and fear in children: A critical assessment.
Journal of Dentistry for Children,65, 252-258.
Affectiva Inc. (2012a). Clinical Research. Retrieved from
http://www.affectiva.com/research-area/clinical-research/.
Affectiva Inc. (2012b). Affectiva QTM Solutions White Paper: Liberate yourself from the
lab – Q Sensor measures EDA in the wild. Available upon request from
http://www.affectiva.com/.
Ahn, R.R., Miller, L.J., Milberger, S., & McIntosh, D.N. (2004). Prevalence of parents’
perceptions of sensory processing disorders among kindergarten children.
American Journal of Occupational Therapy, 58, 287-293.
Aida, J., Kondo, K., Yamamoto, T., Hirai, Nakade, M., Osako, K.,…Watt, R.G. (2011).
Oral health and cancer, cardiovascular, and respiratory mortality of Japanese.
Journal of Dental Research, 90, 1129-1135.
Al-Maskari, A.Y., Al-Maskari, M.Y., & Al-Sudairy, S. (2011). Oral manifestations and
complications of Diabetes Mellitus: A review. Sultan Qaboos University Medical
Journal, 11, 179-186.
Al Agili, D.E., Roseman, J., Pass, M.A., Thornton, J.B., & Chavers, L.S. (2004). Access
to dental care in Alabama for children with special needs: Parents’ perspectives.
Journal of the American Dental Association, 135, 490-495.
Alm, A., Wendt, L.K., Koch, G., Birkhed, D., & Nilsson, M. (2011). Caries in adolescence
– influence from early childhood. Community Dentistry and Oral Epidemiology.
Advance online publication. doi: 10.1111/j.1600-0528.2011.00647.x
Almeida, A.G., Roseman, M.M., Sheff, M., Huntington, N., & Hughes, C.V. (2000).
Future caries susceptibility in children with Early Childhood Caries following
treatment under general anesthesia. Pediatric Dentistry, 22, 302-306.
American Academy of Pediatric Dentistry (2011-12a). Guideline on behavior guidance
for the pediatric dental patient. Pediatric Dentistry, 33, 161-173.
188
American Academy of Pediatric Dentistry (2011-12b). Guideline on caries-risk
assessment and management for infants, children and adolescents. Pediatric
Dentistry, 33, 110-117.
American Academy of Pediatric Dentistry (2011-12c). Guideline on periodicity of
examination, preventive dental services, anticipatory guidance/counseling, and
oral treatment for infants, children, and adolescents. Pediatric Dentistry, 33, 102-
108.
American Academy of Pediatric Dentistry (2011-12d). Guideline on the role of dental
prophylaxis in pediatric dentistry. Pediatric Dentistry, 33, 151-152.
American Academy of Pediatric Dentistry (2011-12e). Policy on early childhood caries
(ECC): Classifications, consequences, and preventive strategies. Pediatric
Dentistry, 33, 47-49.
American Academy of Pediatric Dentistry (2011-12f). Policy on early childhood caries
(ECC): Unique challenges and treatment options. Pediatric Dentistry, 33, 50-52.
American Academy of Pediatric Dentistry (2011-2012g). Policy on the ethical
responsibility to treat or refer. Pediatric Dentistry, 33, 94.
American Academy of Pediatric Dentistry Council on Clinical Affairs et al. (2008-2009).
Policy on the role of pediatric dentists as both primary and specialty care
providers. Pediatric Dentistry, 30(Suppl 7), 79.
American Dental Association (2012). Glossary of Dental Clinical and Administrative
Terms. Retrieved from http://www.ada.org/glossaryforprofessionals.aspx#p
American Occupational Therapy Association (2008). Occupational therapy practice
framework: Domain and process (2nd ed.). American Journal of Occupational
Therapy, 62, 625-683.
American Occupational Therapy Association (2010). The scope of occupational therapy
services for individuals with an autism spectrum disorder across the life course.
American Journal of Occupational Therapy, 64(Suppl.), S125-S136.
American Psychiatric Association (2000). Diagnostic and statistical manual of mental
disorders: (4
th
ed.): Text revision. Washington, DC: American Psychiatric
Association.
Armfield , J.M. (2010a). The extent and nature of dental fear and phobia in Australia.
Australian Dental Journal, 55, 368-377.
189
Ayres, A.J. (1964). Tactile functions: Their relation to hyperactive and perceptual motor
behavior. American Journal of Occupational Therapy, 18, 6-11.
Ayres, A.J. (2005). The nervous system within: Understanding how the brain works and
the importance of sensation. Sensory integration and the child: Understanding
hidden challenges. Los Angeles: Western Psychological Services.
Azarpazhooh, A., & Main, P.A. (2009). Efficacy of dental prophylaxis (rubber cup) for
the prevention of caries and gingivitis: A systematic review of literature. British
Dental Journal, 207:E14, 1-8.
Baker, A.E.Z., Lane, A., Angley, M.T., & Young, R.I. (2008). The relationship between
sensory processing patterns and behavioural responsiveness in autistic disorder:
A pilot study. Journal of Autism and Developmental Disorders, 38, 867-875.
Bandini, LG., Anderson, S.E., Curtin, C., Cermak, S., Evans, E.W., Scampini,
R.,…Must, V. (2010). Food selectivity in children with autism spectrum disorders
and typically developing children. Journal of Pediatrics, 157, 259-264.
Baranek, G.T. (2002). Efficacy of sensory and motor interventions for children with
autism. Journal of Autism and Developmental Disorders, 32, 397-422.
Baranek, G.T., David, F.J., Poe, M.D., Stone, W.L., & Watson, L.R. (2006). Sensory
experiences questionnaire: Discriminating sensory features in young children
with autism, developmental delays, and typical development. Journal of Child
Psychology and Psychiatry, 47, 591-601.
Baranek, G.T., Boyd, B.A., Poe, M.D., David, F.J., & Watson, L.R. (2007).
Hyperresponsive sensory patterns in young children with autism, developmental
delay, and typical development. American Journal on Mental Retardation, 112,
233-245.
Baranek, G.T., Roberts, J.E., David, F.J., Sideris, J., Mirrett, P.L., Hatton, D.D., & Bailey
Jr., D.B. (2008). Developmental trajectories and correlates of sensory processing
in young boys with Fragile X Syndrome. Physical and Occupational Therapy in
Pediatrics, 28, 79-98.
Barry, R.J., & James, A.L. (1988). Coding of stimulus parameters in autistic, retarded,
and normal children: Evidence for a two-factor theory of autism. International
Journal of Psychophysiology, 6, 139-149.
Bedi, R., Sutcliffe, P., Donnan, P.T., & McConnachie, J. (1992). The prevalence of
dental anxiety in a group of 13- and 14-year-old Scottish children. International
Journal of Paediatric Dentistry, 2, 17-24.
190
Beck, J., Garcia, R., Heiss, G., Vokonas, P.S., & Offenbacher, S. (1996). Periodontal
disease and cardiovascular disease. Journal of Periodontology, 67, 1123-1137.
Beltran-Aguilar, E.D., Barker, L.K., Canto, M.T., Dye, B.A., Gooch, B.F., Griffin, S.O.,
… & Wu, T. (2005). Surveillance for dental caries, dental sealants, tooth
retention, edentulism, and enamel fluorosis – United States, 1988-1994 and
1999-2002. Morbidity and Mortality Weekly Report, 54, 1-45.
Ben-Sasson A., Carter, A.S., & Briggs-Gowan, M.J. (2009a). Sensory over-responsivity
in elementary school: Prevalence and social-emotional correlates. Journal of
Abnormal Child Psychology, 37, 705-716.
Ben-Sasson, A., Hen, L., Fluss, R., Cermak, S.A., Engel-Yeger, B., & Gal, E. (2009b). A
meta-analysis of sensory modulation symptoms in individuals with autism
spectrum disorders. Journal of Autism and Developmental Disorders, 39, 1-11.
Berggren, U., & Meynert, G. (1984). Dental fear and avoidance: Causes, symptoms,
and consequences. Journal of American Dental Association, 109, 247-251.
Bernstein, A.S., Frith, C.D., Gruzelier, J.H., Patterson, T., Straube, E., Venables, P.H.,
& Zahn, T.P. (1982). An analysis of the skin conductance orienting response in
samples of American, British, and German Schizophrenics. Biological
Psychology, 14, 155-211.
Bolton, P.F., Carcani-Rathwell, I., Hutton, J. Goode, S., Howlin, P., & Rutter, M. (2011).
Epilepsy in autism: Features and correlates. British Journal of Psychiatry, 198,
289-294.
Bradley, E.A., Summers, J.A., Wood, H.L., & Bryson, S.E. (2004). Comparing rates of
psychiatric and behavior disorders in adolescents and young adults with severe
intellectual disability with and without autism. Journal of Autism and
Developmental Disorders, 34, 151-161.
Brett-Green, B.A., Schoen, S.A., Coll, J., Schaaf, R.C., Reale, M. Eno, E.,…Miller, L.J.
(2004). Psychophysiological variability in children with Asperger’s Syndrome.
Psychophysiology, 41(Suppl 1), S97.
Brickhouse, T.H., Farrington, F.H., Best, A.M., & Ellsworth, C.W. (2009). Barriers to
dental care for children in Virginia with autism spectrum disorders. Journal of
Dentistry for Children, 76, 188-193.
Brown, C., Tollefson, N., Dunn, W., Cromwell, R., & Filion, D. (2001). The Adult Sensory
Profile: Measuring patterns of sensory processing. American Journal of
Occupational Therapy, 55, 75-82.
191
Buchanan, H. (2010). Assessing dental anxiety in children: The Revised Smiley Faces
Program. Child: Care, Health and Development, 36, 534-538.
Burkhart, N. (1984). Understanding and managing the autistic child in the dental office.
Dental Hygiene, 58, 60-63.
Burtner, A.P., & Dicks, J.L. (1994). Providing oral health care to individuals with severe
disabilities residing in the community: Alternative care delivery systems. Special
Care in Dentistry, 14, 188-193.
Bundy, A.C., & Murray, E.A. (2002). Sensory integration: A. Jean Ayres’ theory
revisited. In A.C. Bundy, S.J. Lane, & E.A. Murray (Eds)., Sensory Integration:
Theory and Practice (2
nd
ed.) (pp. 3-33). Philadelphia: F.A. Davis Company.
Caprioglio, A., Mariani, L., & Tettamanti, L. (2009). A pilot study about emotional
experiences by using CFSS-DS in young patients. European Journal of
Paediatric Dentistry, 10, 121-124.
Casamassimo, P. (1996). Bright futures in practice: Oral health. Arlington, VA: National
Center for Education in Maternal and Child Health.
Casamassimo, P.S., Seale, N.S., & Ruehs, K. (2004). General dentists’ perceptions of
educational and treatment issues affecting access to care for children with
special health care needs. Journal of Dental Education, 68, 23-28.
Casamassimo, P. & Holt, K., Eds. (2004). Bright future in practice: Oral health.
Washington, DC: National Maternal and Child Oral Health Resource Center.
Casamassimo, P., Berlockher, W.C., Cheney, W., Donly, K., Lee, J., Nowak, A., …, &
Dalhouse, S. (2009a). The future of pediatric dentistry advanced education: The
need for change in training standards. Pediatric Dentistry, 31, 298-309.
Case-Smith, J., & Humphry, R. (2001). Feeding intervention. In J. Case-Smith (Ed.),
Occupational Therapy for Children (4th ed.) (pp. 453-488). St. Louis: Mosby.
Centers for Disease Control and Prevention (2013). Autism spectrum disorders: Data
and statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html.
Cermak, S.A., Curtin, C., & Bandini, L.G. (2010). Food selectivity and sensory sensitivity
in children with autism spectrum disorders. Journal of American Dietetic
Association, 110, 238-246.
Cermak, S.A., & Groza, V. (1998). Sensory processing problems in post-institutionalized
children: Implications for social work. Child and Adolescent Social Work Journal,
15, 5-37.
192
Chadwick, B.L. (2002). Assessing the anxious patient. Dental Update, 29, 448-454.
Chamak, B., Bonniau, B., Jaunay, E., & Cohen, D. (2008). What can we learn about
autism from autistic persons? Psychotherapy and Psychosomatics, 77, 271-279.
Chang, C.M. ( 2009). Autonomic and behavioral responses of children with autism to
auditory stimulation (Unpublished doctoral dissertation). University of Southern
California, Los Angeles.
Charles, J.M. (2010). Dental care in children with developmental disabilities: Attention
Deficit Disorder, Intellectual Disabilities, and Autism. Journal of Dentistry for
Children, 77, 84-91.
Child and Adolescent Health Measurement Initiative. (2011a). National survey of
children with special health care needs 2000-10 [Online data set]. Retrieved from
http://www.childhealthdata.org/browse/survey?s=1
Child and Adolescent Health Measurement Initiative. (2011b). National survey of
children’s health 2007 [Online data set]. Retrieved from
http://www.childhealthdata.org/browse/survey?s=1
Ciesla, D., Kerins, C.A., Seale, N.S., & Casamassimo, P.S. (2011). Characteristics of
dental clinics in US children’s hospitals. Pediatric Dentistry, 33, 100-106.
Commission on Dental Accreditation, American Dental Association (2010). Accreditation
standards for dental education programs. Retrieved from
http://www.ada.org/sections/educationAndCareers/pdfs/predoc.pdf.
Commission on Dental Accreditation, American Dental Association (2007). Accreditation
standards for advanced education programs in general dentistry. Retrieved from
http://www.ada.org/sections/educationAndCareers/pdfs/aegd.pdf.
Commission on Dental Accreditation, American Dental Association (1998). Accreditation
standards for advanced specialty education programs in pediatric dentistry.
Retrieved from http://www.ada.org/sections/educationAndCareers/pdfs/ped.pdf.
Connick, C., Pugliese, S., Willette, J., & Palat, M. (2000). Desensitization: Strengths and
limitations of its use in dentistry for the patient with severe and profound mental
retardation. ASDC Journal of Dentistry for Children, 67, 250-255.
Conyers, C., Miltenberger, R.G., Peterson, B., Gubin, A., Jurgens, M., …, & Barenz, R.
(2004). An evaluation of in vivo desensitization and video modeling to increase
compliance with dental procedures in persons with mental retardation. Journal of
Applied Behavior Analysis, 37, 233-238.
193
Crall, J.J. (2004). Behavior management conference Panel II Report – Third-party payer
issues. Pediatric Dentistry, 26, 171-174.
Crall, J.J. (2007). Improving oral health for individuals with special health care needs.
Pediatric Dentistry, 29, 98-104.
Crespi, P.V., & Ferguson, P.S. (1987). Approaching dental care for the developmentally
disabled: A guide for the dental practitioner. New York State Dental Journal, 53,
29-32.
Cumella, S., Ransford, N., Lyons, J., & Burnham, H. (2000). Needs for oral care among
people with intellectual disability not in contact with Community Dental Services.
Journal of Intellectual Disability Research, 44, 52.
Cuthbert, M.I., & Melamed, B.G. (1982). A screening device: Children at risk for dental
fears and management problems. Journal of Dentistry for Children, 49, 432-436.
Dao, L.P., Zwetchkenbaum, S., & Inglehart, M.R. (2005). General dentists and special
needs patients: Does dental education matter? Journal of Dental Education, 69,
1107-1115.
Davies, P.L., & Gavin, W.J. (2007). Validating the diagnosis of sensory processing
disorders using EEG technology. American Journal of Occupational Therapy, 61,
176-189.
Davies, P.L., Chang, W., & Gavin, W.J. (2010). Middle and late latency ERP
components discriminate between adults, typical children, and children with
sensory processing disorders. Frontiers in Integrative Neuroscience, 4, 1-9.
Davila, J.M., & Jensen, O.E. (1988). Behavioral and pharmacological dental
management of a patient with autism. Special Care in Dentistry, 8, 58-60.
Davis, M.J. (2009). Issues in access to oral health care for special care patients. Dental
Clinics of North America, 53, 169-181.
Dawson, M.E., Nuechterlein, K.H., & Schell, A.M. (1992). Electrodermal anomalies in
recent-onset schizophrenia: Relationships to symptoms and prognosis.
Schizophrenia Bulletin, 18, 295-311.
Dawson, M.E., Schell, A.M., & Filion, D.L. (2000). The electrodermal system. In J.T.
Cacioppo, L.G. Tassinary, & G.G. Bernston (Eds.), Handbook of
Psychophysiology (2
nd
ed.) (pp. 200-223). United States: Cambridge University
Press.
194
Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor
integration in autism: A review of the evidence. Journal of Autism and
Developmental Disorders, 30, 415-421.
Dawson, M.E., & Schell, A.M. (2002). What does electrodermal activity tell us about
prognosis in the schizophrenia spectrum? Schizophrenia Research, 54, 87-93.
Dawson, M.E., Schell, A.M., Rissling, A., Ventura, J., Subotnik, K.I., & Nuechterlein,
K.H. (2010). Psychophysiological prodromal signs of schizophrenic relapse: A
pilot study. Schizophrenia Research, 123, 64-67.
DeMattei, R., Cuvo, A., & Maurizio, S. (2007). Oral assessment of children with autism
spectrum disorder. Journal of Dental Hygiene, 81, 65-76.
Diercke, K., Ollinger, I., Bermejo, J.L., Stucke, K. Lux, C.J., & Brunner, M. (2012).
Dental fear in children and adolescents: A comparison of forms of anxiety
management practiced by general and paediatric dentists. International Journal
of Paediatric Dentistry, 22, 60-67.
Dietrich, T., Culler, C., Garcia, R.I., & Henshaw, M.M. (2008). Racial and ethnic
disparities in children’s oral health: The National Survey of Children’s Health.
Journal of the American Dental Associatio, 139, 1507-1517.
Doerr, P.A., Lang, W.P., Nyquist, L.V., & Ronis, D.L. (1998). Factors associated with
dental anxiety. Journal of American Dental Association, 129, 1111-1119.
Dunn, W. (1999). Sensory Profile: User manual. USA: The Psychological Corporation.
Dunn,W. (2001). The sensations of everyday life: Empirical, theoretical, and pragmatic
considerations. American Journal of Occupational Therapy, 55, 608-620.
Dye, B.A., Ahenkin, J.D., Ogden, M.R.P., Marshall, T.A., Levy, S.M., & Kanellis, M.J.
(2004). The relationship between healthful eating practices and dental caries in
children aged 2-5 years in the United States, 1988-1994. Journal of American
Dental Association, 135, 55-66.
Edelson, S.M., Edelson, M.G., Kerr, D.C.R., & Grandin, T. (1999). Behavioral and
physiological effects of deep pressure on children with autism: A pilot study
evaluating the efficacy of Grandin’s Hug Machine. American Journal of
Occupational Therapy, 53, 145-152.
Edelstein, B.L. (2007). Conceptual frameworks for understanding system capacity in the
care of people with special health care needs. Pediatric Dentistry, 29, 108-116.
195
Edelstein, B.L., & Chinn, C.H. (2009). Update on disparities in oral health and access to
dental care for America’s children. Academic Pediatrics, 9, 415-419.
Edelstein, B.L., & Douglass, C.W. (1995). Dispelling the myth that 50 percent of U.S.
schoolchildren have never had a cavity. Public Health Reports, 110, 522-530.
Eklund, S.A., & Burt, B.A. (1994). Rick factors for total tooth loss int eh United States;
Longitudinal analysis of national data. Journal of Public Health Dentistry, 54, 5-
14.
El-Solh, A.A. (2011). Association between pneumonia and oral care in nursing home.
Lung, 189, 173-180.
Engel-Yeger, B., & Dunn, W. (2011). The relationship between sensory processing
difficulties and anxiety level of health adults. British Journal of Occupational
Therapy, 74, 210-216.
Fahlvik-Planefeldt, C. & Herrstrom, P. (2001). Dental care of autistic children within the
non-specialized Public Dental Service. Swedish Dental Journal, 25, 113-118.
Falkmer, T., Anderson, K., Falkmer, M., & Horlin, C. (2013). Diagnostic procedures in
autism spectrum disorders: A systematic literature review. European Child
Adolescent Pschiatry, 22, 329-340.
Fazlioglu, Y., & Baran, G. (2008). A sensory integration therapy program on sensory
problems for children with autism. Perceptual and Motor Skills, 106, 415-422.
Fenton, S.J. (1993). Universal access: Are we ready? Special Care in Dentistry, 13, 94.
Fenton, S.J., Hood, H., Holder, M., May Jr., P.B., & Mouradian, W.E. (2003). The
American Academy of Developmental Medicine and Dentistry: Eliminating health
disaprities for individuals with Mental Retardation and other Developmental
Disabilities. Journal of Dental Education, 67, 1337-1344.
Frankl, S.N., Shiere, F.R., & Fogels, H.R. (1962). Should the parent remain with the
child in the dental operatory? Journal of Dentistry for Children, 29, 150-163.
Friedlander, A.H., Yagiela, J.A., Paterno, V.I., & Mahler, M.E. (2003). The
pathophysiology, medial management, and dental implications of autism. Journal
of California Dental Association, 31, 681-691.
Friedlander, A.H. (2005). Autism: Acknowledging the heritable aspects of illness as
possible barriers to successfully marshaling family assistance. Special Care in
Dentistry, 25, 177-178.
196
Friedlander, A.H., Yagiela, J.A., Paterno, V.I., & Mahler, M.E. (2006). The
neuropathology, medical management and dental implications of autism. Journal
of the American Dental Association, 137, 1517-1527.
Fontana, M. & Zero, D.T. (2006). Assessing patients’ caries risk. Journal of American
Dental Association, 137, 1231-1239.
Gadow, K.D., DeVincent, C.J., Pomeroy, J., & Azizian, A. (2004). Psychiatric symptoms
in preschool children with PDD and clinic and comparison samples. Journal of
Autism and Developmental Disorders, 34, 379-393.
Gadow, K.D., DeVincent, C.J., Pomeroy, J., & Azizian, A. (2005). Comparison of DSM-
IV symptoms in elementary school-age children with PDD versus clinic and
community samples. Autism, 9, 39-415.
Gadow, K. D., & Sprafkin, J. (1994). Child symptom inventory-4. Stony Brook, NY:
Checkmate Plus.
Gavin, W.J., Dotseth, A., Roush, K.K., Smith, C.A., Spain, H.D., & Davies, P.L. (2011).
Electroencephalography in children with and without sensory processing
disorders during auditory perception. American Journal of Occupational Therapy,
65, 370-377.
Geraghty, M.E., Depasquale, G.M., & Lane, A.E. (2010a). Nutritional intake and
therapies in autism: A spectrum of what we know – Part 1. Infant, Child, &
Adolescent Nutrition, 2, 62-69.
Geraghty, Bates-Wall, Ratliff-Schaub, K., & Lane, A.E. (2010b). Nutritional interventions
and therapies in autism: A spectrum of what we know – Part 2. Infant, Child, &
Adolescent Nutrition, 2, 120-133.
Geschwind, D.H. (2009). Advances in autism. Annual Review of Medicine, 60, 367-380.
Ghanizadeh, A. (2008). Tactile sensory dysfunction in children with ADHD. Behavioural
Neurology, 20, 107-112.
Gillott, A., Furniss, F., & Walter, A. (2001). Anxiety in high-functioning children with
autism. Autism, 5, 277-286.
Glassman, P., Miller, C., Wozniak, T., & Jones, C. (1994). A preventive dentistry training
program for caretakers of persons with disabilities residing in community
residential facilities. Special Care in Dentistry, 14, 137-143.
197
Glassman, P., Miller, C.E., & Lechowick, J. (1996). A dental school’s role in developing
a ruual, community-based, dental care delivery system for individuals with
developmental disabilities. Special Care in Dentistry, 16, 188-193.
Glassman, P. & Miller, C. (2003). Dental disease prevention and people with special
needs. Journal of California Dental Association, 31, 149-160.
Glassman, P., Henderson, T., Helgeson, M., Niessen, L., Demby, N., Miller, C., …Toto,
K. (2005). Oral health for people with special needs: Consensus statement on
implications and recommendations for the dental profession. Journal of California
Dental Association, 33, 619-623.
Glassman, P., & Miller, C. (2009). Social supports and prevention strategies as adjuncts
and alternatives to sedation and anesthesia for people with special needs.
Special Care in Dentistry, 29, 31-38.
Gordon, S.M., Dionne, R.A., & Snyder, J. (1998). Dental fear and anxiety as a barrier to
accessing oral health care among patients with special health care needs.
Special Care in Dentistry, 18, 88-92.
Gotham, K., Bishop, S.L., Lord, C. (2011). Diagnosis of autism spectrum disorders. In
D.G. Amaral, G. Dawson, & D.H. Geschwind (Eds.), Autism spectrum disorders
(pp. 30-43). Oxford: Oxford Press.
Grant, E., Carlson, G., & Cullen-Erickson, M. (2004). Oral health for people with
intellectual disability and high support needs. Special Care in Dentistry, 24, 70-
79.
Green, D. & Flanagan, D. (2008). Understanding the autistic dental patient. General
Dentistry, 56, 167-171.
Gurney, J.G., McPheeters, M.L., & Davis, M.M. (2006). Parental report of health
conditions and health care use among children with and without autism. Archives
of Pediatrics & Adolescent Medicine, 160, 825-830.
Gustafsson, A.A., Broberg, A., Bodin, L., Berggren, U., & Arnrup, K. (2010a). Dental
behavior management problems: The role of child personal characteristics.
International Journal of Paediatric Dentistry, 20, 242-253.
Gustafsson, A., Arnrup, K., Broberg, A.G., Bodin, L., & Berggren, U. (2010b). Child
dental fear as measured with the Dental Subscale of the Children’s Fear Survey
Schedule: The impact of referral status and type of informant (child versus
parent). Community Dentistry and Oral Epidemiology, 38, 256-266.
198
Haavio, M. (1995). Oral helath care of the mentally retarded and other persons with
disabilities in the Nordic countries: Present situation and plans for the future.
Special Care in Dentistry, 15, 65-69.
Harrison, J., & Hare, J. (2004). Brief report: Assessment of sensory abnormalities in
people with autistic spectrum disorders. Journal of Autism and Developmental
Disorders, 34, 727-730.
Hirstein, W., Iversen, P., & Ramachandran, V.S. (2001). Autonomic responses of
autistic children to people and objects. Proceedings of the Royal Society of
London, 268, 1883-1888.
Holder, M., Waldman, H.B., & Hood, H. (2009). Preparing health professionals to
provide care to individuals with disabilities. International Journal of Oral Science,
1, 66-71.
Horvath, K., Papadimitriou, J.C., Rabsztyn, A., Drachenberg, C., & Tildon, J.T. (1999).
Gastrointestinal abnormalities in children with autistic disorder. Journal of
Pediatrics, 134, 533-535.
Horvath, K., & Perman, J.A. (2002a). Autistic disorder and gastrointestinal disease.
Current Opinion Pediatrics, 14, 583-587.
Horvath, K., & Perman, J.A. (2002b). Autism and gastrointestinal symptoms. Current
Gastroenterology Reports, 4, 251-258.
Hosey, M.T., & Blinkhorn, A.S. (1995). An evaluation of four methods of assessing the
behavior of anxious child dental patients. International Journal of Paediatric
Dentistry, 5, 87-95.
Hugdahl, K. (1995). Persepctives in Cognitive Neuroscience: Psychophysiology, the
mind-body perspective. Massachusetts: Harvard University Press.
Hulland, S., & Sigal, M.J. (2000). Hospital-based dental care for persons with
disabilities: A study of patient selection criteria. Special Care in Dentistry, 29,
131-138.
Humphris, G., Freeman, R., Gibson, B., Simpson, K., & Whelton, H. (2005). Oral health-
related quality of life for 8-10-year-old children: An assessment of a new
measure. Community Dentistry and Oral Epidemiology, 33, 326-332.
Ioannidou, E., & Swede, H. (2011). Disparitis in periodontitis prevalence among chronic
kidney disease patients. Journal of Dental Research, 90, 730-734.
199
Isman, B., & Newman, R.N. (1997). Oral conditions in young children with
developmental disabilities: Addressing common parental concerns. Dental
Hygiene News, 10, 5-6.
Iwasaki, M., Taylor, G.W., Nesse, W., Vissink, A., Yoshihara, A., & Miyazaki, H. (2011).
Periodontal disease and decreased kidney function in Japanese elderly.
American Journal of Kidney Diseases, 59, 202-209.
Jaber, M.A. (2011). Dental caries experience, oral health status and treatment needs of
dental patients with autism. Journal of Applied Oral Science, 19, 212-217.
James, A.L., & Barry, R.J. (1984). Cardiovascular and electrodermal responses to
simple stimuli in autistic, retarded and normal children. International Journal of
Psychophysiology, 1, 179-193.
Kagihara, L.E., Niederhauser, V.P., & Stark, M. (2009). Assessment, management, and
prevention of early childhood caries. Journal of the American Academy of Nurse
Practitioners, 21, 1-10.
Kamen, S., & Skier, J. (1985). Dental management of the autistic child. Special Care in
Dentistry, 5, 20-23.
Kawashita, Y., Kitamura, M., & Saito, T. (2011). Review article: Early childhood caries.
International Journal of Dentistry,
Kenney, M.K., Kogan, M.D., & Crall, J.J. (2008). Parental perceptions of dental/oral
health among children with and without special health care needs. Ambulatory
Pediatrics, 8, 312-320.
Kerins, C., Casamassimo, P.S., Ciesla, D., Lee, Y., & Seale, N.S. (2011). A preliminary
analysis of the US dental health care system’s capacity to treat children with
special health care needs. Pediatric Dentistry, 33, 107-112.
Kerns, J.K., Trivedi, M.H., Grannemann, B.D., Garver, C.R., Johnson, D.G., Andrews,
A.A.,…Schroeder, J.L. (2007). Sensory correlations in autism. Autism, 11, 123-
134.
Kim, J.A., Szatmari, P., Bryson, S.E., Streiner, D.L., & Wilson, F.J. (2000). The
prevalence of anxiety and mood problems among children with autism and
Asperger syndrome. Autism, 4, 117-132.
Kimball, J.G. (1999). Sensory integration frame of reference: Theoretical base,
function/dysfunction continua, and guide to evaluation. In P. Kramer, & J. Hinjosa
(Eds.), Frames of Reference for Pediatric Occupational Therapy (2
nd
ed.)
(pp.119-168). Philadelphia: Lippincott, Williams & Wilkins.
200
Klein, U., & Nowak, A.J. (1998). Autistic disorder: A review for the pediatric dentist.
Pediatric Dentistry, 20, 312-317.
Klein, U., & Nowak, A.J. (1999). Characteristics of patients with autistic disorder (AD)
presenting for dental treatment: A survey and chart review. Special Care in
Dentistry, 19, 200-207.
Klingberg, G. (2008). Dental anxiety and behavior management problems in paediatric
dentistry – A review of background factors and diagnostics. European Archives of
Paediatric Dentistry, 9 (Suppl 1), 11-15.
Klingberg, G., & Broberg, A.G. (2007). Dental fear/anxiety and dental behavior
management problems in children and adolescents: A review of prevalence and
concomitant psychological factors. International Journal of Paediatric Dentistry,
17, 391-406.
Koenig, K.P., & Rudney, S.G. (2010). Performance challenges for children and
adolescents with difficulty processing and integrating sensory information: A
systematic review. American Journal of Occupational Therapy, 64, 430-442.
Kopycka-Kedzierawski, D.T., & Auinger, P. (2008). Dental needs and status of autistic
children: Results from the national survey of children’s health. Pediatric Dentistry,
30, 54-58.
Kupietzky, A., Tal, E., & Vargas, K.G. (2012). Parental cooperation scale in pediatric
dentistry setting: Reliability and criteria. Journal of Clinical Pediatric Dentistry, 37,
157-162.
Lane, S.J. (2002). Sensory modulation. In A.C. Bundy, S.J. Lane, & E.A. Murray (Eds.),
Sensory integration: Theory and practice (2
nd
ed.) (pp. 101-122). Philadelphia:
F.A. Davis Company.
Lane, S.J. & Schaaf, R.C. (2010). Examining the neuroscience evidence for sensory-
driven neuroplasticity: Implications for sensory-based occupational therapy for
children and adolescents. American Journal of Occupational Therapy, 64, 375-
390.
Lane, S.J., Reynolds, S., & Thacker, L. (2010). Sensory over-responsivity and ADHD:
Differentiating using electrodermal responses, cortisol, and anxiety. Frontiers in
Integrative Neuroscience, 4, 1-11.
LaVesser, P., & Hilton, C.L. (2010). Self-care skills for children with an autism spectrum
disorder. In H.M. Kuhaneck & R. Watling (Eds.), Autism: A comprehensive
occupational therapy approach, 3
rd
ed. (pp. 427-468). Maryland: AOTA Press.
201
Leekam, S.R., Libby, S.J., Wing, L., Gould, J., & Taylor, C. (2002). The Diagnostic
Interview for Social and Communication Disorders: Algorithms for ICD-10
childhood autism and Wing and Gould autistic spectrum disorder. Journal of
Child Psychology and Psychiatry, 43, 327-342.
Leekam, S.R., Nieto, C., Libby, S.J., Wing, L., & Gould, J. (2007). Describing the
sensory abnormalities of children and adults with autism. Journal of Autism and
Developmental Disorders, 37, 894-910.
Lewis, C., Robertson, A.S., & Phelps, S. (2005). Unmet dental care needs among
children with special health care needs: Implications for the medical home.
Pediatrics, 116, e426-431.
Lewis, C.W. (2009). Dental care and children with special health care needs: A
population-based perspective. Academic Pediatrics, 9, 420-426.
Lin, S.H., Cermak, S., Coster, W.J., & Miller, L. (2005). The relation between length of
institutionalizationand sensory integration in children adopted from eastern
Europe. American Journal of Occupational Therapy, 59, 139-147.
Locker, D., Liddell, A., Dempster, L., & Shapiro, D. (1999). Age of onset of dental
anxiety. Journal of Dental Research, 78, 790-796.
Loo, C.Y., Graham, R.M., and Hughes, C.V. (2008). The caries experience and
behavior of dental patients with autism spectrum disorder. Journal of the
American Dental Association, 139, 1518-1524.
Loo, C.Y., Graham, R.M., & Hughes, C.V. (2009). Behaviour guidance in dental
treatment of patients with autism spectrum disorder. International Journal of
Paediatric Dentistry, 19, 390-398.
Lord, C., & Bishop, S.L. (2010). Social policy report: Autism spectrum disorders –
Diagnosis, prevalence, and services for children and families. Sharing Child and
Youth Development Knowledge, 24, 1-27.
Lord, C., Rutter, M., DiLavore, P., & Risi, S, Gotham, K., & Bishop, S.L. (2012). Autism
Diagnostic Observation Schedule Manual, Second Edition (ADOS-2). Los
Angeles: Western Psychological Services.
Low, W., Tan, S., & Schwartz, S. (1999). The effect of severe caries on the quality of life
in young children. American Academy of Pediatric Dentistry, 21, 325-326.
Luppanapornlarp, S., Leelataweewud, P., Putongkam, P., & Ketanont, S. (2010).
Periodontal status and orthodontic treatment need of autistic children. World
Journal of Orthodontics, 11, 256-261.
202
Lyons, R.A. (2009). Understanding basic behavioral support techniques as an
alternative to sedation and anesthesia. Special Care in Dentistry, 29, 39-50.
Mailloux, Z., & Smith Roley, S. (2010). Sensory integration. In H.M. Kuhaneck, & R.
Watling (Eds.), Autism: A comprehensive occupational therapy approach
(pp.469-508). Maryland: AOTA Press.
Manley, M.C.G. (2004). A UK perspective. British Dental Journal, 196, 138-139.
Marco, E.J., Hinkley, L.B.N., Hill, S.S., & Nagrajan, S.S. (2011). Sensory processing in
autism: A review of psychophysiologic findings. Pediatric Research, 69, 48R-
54R.
Marshall, J., Sheller, B., Williams, B.J., Mancl, L., & Cowan, C. (2007). Cooperation
predictors for dental patients with autism. Pediatric Dentistry, 29, 369-376.
Marshall, J., Sheller, B., Mancl, L., & Williams, B.J. (2008). Parental attitudes regarding
behavior guidance of dental patients with autism. Pediatric Dentistry, 30, 400-
407.
Marshall, J., Sheller, B., & Mancl, L. (2010). Caries-risk assessment and caries status of
children with autism. Pediatric Dentistry, 32, 69-75.
Martin, M.D., Kinoshita-Byre, J., & Getz, T. (2002). Dental fear in a special needs clinic
population of persons with disabilities. Special Care in Dentistry, 22, 99-102.
McIntosh, D.N., Miller, L.J., Shyu, V., & Hagerman, R.J. (1999). Sensory-modulation
disruption, electrodermal responses, and functional behaviors. Developmental
Medicine and Child Neurology, 41, 608-615.
McKinney, L.A., Palmer, C.A., Dwyer, J.T., & Garcia, r. (1991). Common dentally
related nutrition concerns of children with special needs: Part 1. Topics in Clinical
Nutrition, 62, 70-75.
Milgrom, P., Fiset, L., Melnick, S., & Weinstein, P. (1988). The prevalence and practice
management consequences of dental fear in a major US city. Journal of
American Dental Association, 116, 641-647.
Miller-Kuhaneck, H. (2008). Going to the Dentist. Sensory Processing Disorder
Foundation. Retrieved from http://www.spdfoundation.net/library/dentist.html.
Miller, L.J., Anzalone, M.E., Lane, S.J., Cermak, S.A., & Osten, E.T. (2007c). Concept
evolution in sensory integration: A proposed nosology for diagnosis. American
Journal of Occupational Therapy, 61, 135-140.
203
Miller, L.J., & Lane, S.J. (2000). Toward a consensus in terminology in sensory
integration theory an practice: Part 1: Taxonomy of neurophysiological
processes. American Journal of Occupational Therapy, Sensory Integration
Special Interest Section, 23, 1-4.
Miller, L.J., McIntosh, D.N., McGrath, J., Shyu, Lampe, M., Taylor, A.K.,…Hagerman,
R.J. (1999). Electrodermal responses to sensory stimuli in individuals with Fragile
X Syndrome: A preliminary report. American Journal of Medical Genetics, 83,
268-279.
Miller, L.J., Reisman, J.E., McIntosh, D.N., & Simon, J. (2001). An ecological model of
sensory modulation: Performance of children with Fragile X Syndrome, Autistic
Disorder, Attention-Deficit/Hyperactivity Disorder, and Sensory Modulation
Dysfunction. In S.S. Roley, E.I. Blanche, & R.C. Schaaf (Eds.), Understanding
the nature of sensory integration with diverse populations (pp. 57-88). US:
Therapy Skill Builders.
Miller, L.S., Manwell, M.A., Newbold, D., Reding, M.E., Rasheed, A., Blodgett, J., &
Kornman, K.S. (1992). The relationship between reduction in periodontal
inflammation and Diabetes control: A report of 9 cases. Journal of
Periodontology, 63, 843-848.
Moore, R., Birn, H., Kirkegaard, E., Brodsgaard, I., & Scheutz, F. (1993). Prevalence
and characteristics of dental anxiety in Danish adults. Community Dentistry and
Oral Epidemiology, 21, 292-296.
Morinushi, T., Ueda, Y., & Tanaka, C. (2001). Autistic children: Experience and severity
of dental caries between 19080 and 1995 in Kagoshima City, Japan. Journal of
Clinical Pediatric Dentistry, 25, 323-328.
Morris, C.D.N. (2004). A commentary on the legal issues. British Dental Journal, 196,
139-140.
Mulligan, R. & Seirawan, H. (2009). The children’s dental health project of Los Angeles
County: The oral health baseline needs assessment of underprivileged children.
Retrieved from
http://dentistry.usc.edu/uploadedFiles/News/CDHP%20Final%20Report%201125
2009_0.pdf
Murshid, E.Z. (2011). Characteristics and dental experiences of autistic children in
Saudi Arabia: Cross-sectional study. Journal of Autism and Developmental
Disorders, 41, 1629-1634.
204
Nancy Lurie Marks Family Foundation (2011). D-Termined program of repetitive tasking
and familiarization in dentistry: A behavior management approach. Retrieved
from: http://www.nlmfoundation.org/media.htm.
National Center for education in Maternal and Child Health (2003). Oral health and
learning: When children’s oral health suffers, so does their ability to learn (2
nd
ed.). Washington, DC: National Maternal and Child Oral Health Resource Center.
Retrieved from http://www.mchoralhealth.org/PDFs/learningfactsheet.pdf
National Maternal and Child Oral Health Resource Center (2004a). Promoting
awareness, preventing pain: Facts on early childhood caries (ECC) (2
nd
ed.).
Washington, DC: National Maternal and Child Oral Health Resource Center.
Retrieved from http://www.mchoralhealth.org/PDFs/ECCFactSheet.pdf
Nelson, L.P., Getzin, A., Graham, D., Zhou, J., Wagle, E.M., McQuiston,
J.,…Huntington, N.L. (2011). Unmet dental needs and barriers to care for
children with significant special health care needs. Pediatric Dentistry, 33, 29-36.
Newacheck, P.W., Hughes, D.C., Hung, Y., Wong, S., & Stoddard, J.J. (2000a). The
unmet health needs of America’s children. Pediatrics, 105, 989-997.
Newacheck, P.W., McManus, M., Fox, H.B., Hung, Y., & Halfon, N. (2000). Access to
health care for children with special health care needs. Pediatrics, 105, 760-766.
Newton, J.T., & Buck, D.J. (2000). Anxiety and pain measures in dentistry: A guide to
their quality and application. Journal of American Dental Association, 131, 1449-
1457.
Nicolas, E., Bessadet, M., Collado, V., Carrasco, P., Rogerleroi, V., & Hennequin, M.
(2010). Factors affecting dental fear in French children aged 5-12 years.
International Journal of Paediatric Dentistry, 20 366-373.
Nuttall, N.M., Gilbert, A., & Morris, J. (2008). Children’s dental anxiety in the United
Kingdom in 2003. Journal of Dentistry, 36, 857-860.
Owens, P.L., Kerker, B.D., Zigler, E., & Horwitz, S.M. (2006). Vision and oral health
needs of individuals with intellectual disability. Mental Retardation and
Developmental Disabilities Research Reviews, 12, 28-40.
Palkovitz, R.J., & Wisenfeld, A.R. (1980). Differential autonomic responses of autistic
and normal children. Journal of Autism and Developmental Disorders, 10, 347-
360.
205
Parham, L.D., & Mailloux, Z (2010). Sensory integration. In J. Case-Smith & J.C.
O’Brien (Eds.), Occupational therapy for children 6
th
ed. (pp.325-372). St. Louis:
Elsevier Mosby.
Paul, R., Miles, S, Cicchetti, D, Sparrow, S, Klin, A, Volkmar, F, Coflin, M, & Booker, S
(2004). Adaptive behavior in autism and pervasive developmental disorder-not
otherwise specified: Microanalysis of scores on the Vineland Adaptive Behavior
Scales. Journal of Autism and Developmental Disorders, 34 (2),223-228.
Pavi, E., Kay, E.J., & Stephen, K.W. (1995). The effect of social and personal factors on
the utilization of dental services in Glasgow, Scotland. Community Dental Health,
12, 208-215.
Picard, R.W. (2009). Future affective technology for autism and emotion
communication. Philosophical Transactions of The Royal Society B, 364, 3575-
3584.
Picard, R. W. (2012, May). Advances in personalized technology for autism, emotion,
sleep, and seizures. Paper presented at the KiDA Innovation Series, Irvine, CA.
Pourat, N., & FInocchio, L. (2010). Racial and ethnic disparities in dental care for
publicly insured children. Health Affairs, 29, 1356-1363.
Preshaw, P.M., Alba, AL.L., Herrera, D., Jepsen, S., Konstantinidis, A., Makrilakis, K., &
Taylor, R. (2012). Periodontitis and diabetes: A two-way relationship.
Diabetologia, 55, 21-31.
Rafique, S., Banerjee, A., & Fiske, J. (2008). Management of the petrified dental patient.
Dental Update, 35, 196-207.
Rapin, I., & Katzman, R. (1998). Neurobiology of autism. Annals of Neurology, 43, 7-14.
Reynolds, S., & Lane, S.J. (2008b). Diagnostic validity of Sensory Over-Responsivity: A
review of the literature and case reports. Journal of Autism and Developmental
Disorders, 38, 516-529.
Rogers, S.J., Hepburn, S., & Wehner, E. (2003). Parent reports of sensory symptoms
in toddlers with autism and those with other developmental disorders. Journal of
Autism and Developmental Disorders, 33, 631-642.
Rogers, S.L. (2010). Common conditions that influence children’s participation. In J.
Case-Smith & J.C. O’Brien (Eds.), Occupational therapy for children, 6
th
ed. (pp.
146-192). St. Louis: Elsevier Mosby.
206
Rogers, S.J., & Ozonoff, S. (2005). Annotation: What do we know about sensory
dysfunction in autism? A critical review of the empirical evidence. Journal of Child
Psychology and Psychiatry, 46, 1255-1268.
Romer, M., Dougherty, N., & Amores-Lafleur, E. (1999). Predoctoral education in
special care dentistry: Paving the way to better access? ASDC Journal of
Dentistry for Children, 66, 132-135.
Rutter, M., LeCouteur, A., & Lord, C. (2003). Autism diagnostic interview – Revised. Los
Angeles: Western Psychological Services.
Schaaf, R.C. (2011). Interventions that address sensory dysfunction for individuals with
autism spectrum disorders: Preliminary evidence for the superiority of sensory
integration compared to other sensory approaches. In B. Reichow, P. Doehring,
D.V. Cichetti, & F.R. Volkmar (Eds.), Evidence-based practices and treatments
for children with autism (pp. 245-273). New York: Springer.
Schaaf, R.C., Benevides, T., Blanche, E.I., Brett-Green, B.A., Burke, J.P., Cohn, E.S.,
…Schoen, S.A. (2010). Parasympathetic functions in children with sensory
processing disorder. Frontiers in Integrative Neuroscience, 4, 1-11.
Schaaf, R.C., Miller, L.J., Seawell, D., & O’Keefe, S. (2003). Children with disturbances
in sensory processing: A pilot study examining the role of the parasympathetic
nervous system. American Journal of Occupational Therapy, 57, 442-449.
Schaaf, R.C., & Nightlinger, K.M. (2007). Occupational therapy using a sensory
integrative approach: A case study of effectiveness. American Journal of
Occupational Therapy,62, 239-246.
Schell, A.M., Dawson, M.E., Nuechterlein, K.H., Subotnik, K.L., & Ventura, J. (2002).
The temporal stability of electrodermal variables over a one-year period in
patients with recent-onset schizophrenia and in normal subjects.
Psychophysiology, 39, 124-132.
Schell, A.M., Dawson, M.E., Rissling, A., Ventura, J., Subotnik, K.L., Gitlin, M.J., &
Nuechterlein, K.H. (2005). Electrodermal predictors of functional outcome and
negative symptoms in schizophrenia. Psychophysiology, 42, 483-492.
Schoen, S.A., Miller, L.J., Brett-Green, B., & Hepburn, S.L. (2008a). Psychophysiology
of children with autism spectrum disorder. Research in Autism Spectrum
Disorders, 2, 417-429.
207
Schoen, S.A., Miller, L.J., & Green, K.E. (2008b). Pilot study of the Sensory Over-
Responsivity Scales: Assessment and inventory. American Journal of
Occupational Therapy, 62, 393-406.
Schoen, S.A., Miller, L.J., Brett-Green, B.A., & Nielsen, D.M. (2009). Physiological and
behavioral differences in sensory processing: A comparison of children with
autism spectrum disorder and sensory modulation disorder. Frontiers in
Integrative Neuroscience, 3, 1-11.
Schuller, A.A., Willumsen, T., & Holst, D. (2003). Are there differences in oral health and
oral health behavior between individuals with high and low dental fear?
Community Dentistry and Oral Epidemiology, 31, 116-121.
Schriks, M.C.M., & van Amerongen, W.E. (2003). Atraumatic perspectives of ART:
Psychological and physiological aspects of treatment with and without rotary
instruments. Community Dental Oral Epidemiology, 31, 15-20.
Seirawan, H., Schneiderman, J., Greene, V., & Mulligan, R. (2008). Interdisciplinary
approach to oral health for persons with developmental disabilities. Special Care
in Dentistry, 28, 43-52.
Selfer, R. (2005). Who should collect our data: Parents or trained observers? In D.M.
Teti (Ed.), Handbook of research methods in developmental science (pp. 123-
137). Oxford, UK: Blackwell Publishing.
Settineri, S., Tati, F., & Fanara, G. (2005). Gender differences in dental anxiety: Is the
chair position important? Journal of Contemporary Dental Practice, 15, 115-122.
Shapiro, M., Roth, D. & Marcus, A. (2001). The effect of lighting on the behavior of
children who are developmentally disabled. Division of International Special
Education Services Journal, 4, 19-23.
Shapiro, M., Sgan-Cohen, H.D., Parush, S., & Melmed, R.N. (2009a). Influence of
adapted environment on the anxiety of medically treated children with
developmental disability. Journal of Pediatrics, 154, 546-550.
Shapiro, M., Melmed, R.N., Sgan-Cohen, H., Parush, S. (2009b). Effect of sensory
adaptation on anxiety of children with developmental disabilities: A new
approach. Pediatric Dentistry, 31, 222-228.
Sharma, N., & Shamsuddin, H. (2011). Association between respiratory disease in
hospitalized patients and periodontal disease: A cross-sectional study. Journal of
Periodontology, 82, 1155-1160.
208
Shiboski, C.H., Gansky, S.A., Ramos-Gomez, F., Ngo, L., Isman, R., & Pollick, H.F.
(2003). The association of early childhood caries and race/ethnicity among
California preschool children. Journal of Public Health and Dentistry, 63, 38-46.
Siegal, M.D. (1985). Dentists’ reported willingness to treat disabled patients. Special
Care in Dentistry, 5, 102-108.
Silver, E.J. & Stein, R.E.K. (2001). Access to care, unmet health needs, and poverty
status among children with and without chronic conditions. Ambulatory
Pediatrics,1, 314-320.
Smith, S.A., Press, B., Koenig, K.P., & Kinnealey, M. (2005). Effects of sensory
integration intervention on self-stimulating and self-injurious behaviors. American
Journal of Occupational Therapy, 59, 418-425.
Souders, M.C., DePaul, D., Freeman, K.G., & Levy, S.E. (2002). Caring for children and
adolescents with autism who require challenging procedures. Pediatric Nursing,
28, 555-562.
Sparrow, S.S., Cicchetti, D.V., & Balla, D.A. (2005). Vineland Adaptive Behavior Scales
(2nd ed.). Circle Pines, MN: American Guidance Service.
Splieth, C.H., Bunger, B., & Pine, C. (2009). Barriers for dental treatment of primary
teeth in East and West Germany. International Journal of Paediatric Dentistry,
19, 84-90.
Starr, J.M., & Hall, R. (2010). Predictors and correlates of edentulism in healthy older
people. Current Opinion in Clinical Nutrition and Metabolic Care, 13, 19-23.
Stein, L.I., Polido, J.C., Mailloux, Z., Coleman, G.G., & Cermak, S.A. (2011). Oral care
and sensory sensitivities in children with autism spectrum disorder. Special Care
in Dentistry, 31, 102-110.
Stein, L.I., Polido, J.C., Najera, S.O.L., & Cermak, S.A. (2012a). Oral care experiences
and challenges in children with autism spectrum disorders. Pediatric Dentistry,
34, 387-391.
Stein, L.I., Polido, J.C., & Cermak, S.A. (2012b). Oral care and sensory concerns in
autism. American Journal of Occupational Therapy, 66, e73-e76.
Stein, L.I., Polido, J.C., & Cermak, S.A. (2013). Oral care and sensory over-responsivity
in children with autism spectrum disorders. Pediatric Dentistry, 35, 230-235.
209
Stern, R.M., Ray, W.J., & Quigley, K.S. (2001). Skin: Electrodermal activity. In,
Psychophysiological recording 2
nd
ed. (pp. 206-220). Oxford: Oxford University
Press.
Stevens, S., & Gruzelier, J. (1984). Electrodermal activity to auditory stimuli in autistic,
retarded, and normal children. Journal of Autism and Developmental Disorders,
14, 245-260.
Stewart, D., Letts, L., Law, M., Cooper, B.A., Strong, S., & Rigby, P.J. (2003). The
person-environment-occupation model. In E.B. Crepeau, E.S. Cohn, & B.A.B.
Schell (Eds.), Willard & Spackman’s occupational therapy (pp. 227-233).
Philadelphia: Lipincott, Williams & Wilkins.
Stiefel, D.J. (2002). Dental care considerations for disabled adults. Special Care
Dentistry, 22, 26S-39S.
Sukhodolsky, D.G., Scahill, L., Gadow, K.D., Arnold, L.E., Aman, M.G., McDougle, C.J.,
… Lecavalier, L. (2008). Parent-rated anxiety symptoms in children with
pervasive developmental disorders: Frequency and association with core autism
symptoms and cognitive functioning. Journal of Abnormal Child Psychology, 36,
117-128.
Taji, S., & Seow, W.K. (2010). A literature review of dental erosion in children.
Australian Dental Journal, 55, 358-367.
Ten Berge, M., Veerkamp, J.S.J., Hoogstraten, J., & Prins, P.J.M. (2002a). Childhood
dental fear in the Netherlands: Prevalence and normative data. Community
Dentistry and Oral Epidemiology, 30, 101-107.
Ten Berge, M., Veerkamp, J.S.J., Hoogstraten, J., & Prins, P.J.M. (2002b). On the
structure of childhood dental fear, using the Dental Subscale of the Children’s
Fear Survey Schedule. European Journal of Paediatric Dentistry, 3, 73-78.
Ten Berge, M., Veerkamp, J.S.J., Hoogstraten, J., & Prins, P.J.M. (2002c). The Dental
Subscale of the Children’s Fear Survey Schedule: Predictive value and clinical
usefulness. Journal of Psychopathology and Behavioral Assessment, 24, 115-
118.
Tesini, D.A., & Fenton, S.J. (1994). Oral health needs of persons with physical or
mental disabilities. Dental Clinics of North America, 38, 483-498.
Themessl-Huber, M., Freeman, R., Humphris, G., MacGillivray, S., & Terzi, N. (2010b).
Empirical evidence of the relationship between parental and child dental fear: A
210
structured review and meta-analysis. International Journal of Paediatric Dentistry,
20, 83-101.
Thomas, C.W. & Primosch, R.E. (2002). Changes in incremental weight and well-being
of children with rampant caries following complete dental rehabilitation. Pediatric
Dentistry, 24, 109-113.
Tickle, M., Jones, C., Buchannan, K., Milsom, K.M., Blinkhorn, A.S., & Humphris, G.M.
(2009). A prospective study of dental anxiety in a cohort of children followed from
5 to 9 years of age. International Journal of Paediatric Dentistry, 19, 225-232.
Tinanoff, N., & Palmer, C.A. (2000). Dietary determinants of dental caries and dietary
recommendations for preschool children. Journal of Public Health Dentistry, 60,
197-206.
Tinanoff, N. (2005). Association of diet with dental caries in preschool children. Dental
Clinics of North America, 49, 725-737.
Tomchek, S.D. (2010). Sensory processing in individuals with an autism spectrum
disorder. In H. Miller-Kuhaneck, & R. Watling (Eds.), Autism: A comprehensive
occupational therapy approach (3rd ed.) (pp. 135-162). Maryland: AOTA Press.
Tomchek, S.D. & Dunn, W. (2007). Sensory processing in children with and without
autism: A comparative study using the short sensory profile. American Journal of
Occupational Therapy, 61, 190-200.
Tuchman, R., & Cuccaro, M. (2011). Epilepsy and autism: Neurodevelopmental
Perspective. Current Neurology and Neuroscience Reports, 11, 428-434.
Tsai, L.Y. (1996). Brief report: Comorbid psychiatric disorders of autistic disorder.
Journal of Autism and Developmental Disorders, 26, 159-163.
U.S. Department of Health and Human Services (HHS; 2000). Healthy people 2010
(Conference edition, in two volumes). Washington, DC.
U.S. Department of Health & Human Services (2010). Healthy People 2020, Oral
Health: Overview, objectives, and interventions and resources. Retrieved from
http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=
32
U.S. Department of Health and Human Services, National Institute of Dental and
Craniofacial Research (2004). Practical oral care for people with autism (NIH
Publication No. 04-5190). Retrieved from
http://www.nidcr.nih.gov/NR/rdonlyres/5AB6C4F0-0E67-46AB-A967-
328718DF68A7/0/POCAutism.pdf
211
U.S. Department of Health and Human Services, National Institute of Dental and
Craniofacial Research (2010). Oral conditions in children with special needs.
Retrieved from http://www.nidcr.nih.gov/NR/rdonlyres/C681B07A-6046-4186-
8550-9711E438057B/0/OralConditions.pdf
U.S. Department of Justice (1991). Nondiscrimination on the basis of disability in state
and local government services (P.L. 101-336). Retrieved from
http://www.ada.gov/reg2.html
Van Cleave, J., & Davis, M.M. (2008). Preventive care utilization among children with
and without special health care needs: Associations with unmet need.
Ambulatory Pediatrics, 8, 305-311.
Van Engeland, H. (1984). The electrodermal orienting response to auditive stimuli in
autistic children, normal children, mentally retarded children, and child psychiatric
patients. Journal of Autism and Developmental Disorders, 14, 261-279.
Vazquez, C.R., Garcillan, R., Rioboo, R., & Bratos, E. (2002). Prevalence of dental
caries in an adult population with mental disabilities in Spain. Special Care in
Dentistry, 22, 65-69.
Veerkamp, J.S.J., Gruythuysen, R.J.M., van Amerongen, W.E., Hoogstraten, J.,
Weerheijm, K.I. (1995). Dentist’s ratings of child dental-patients’ anxiety.
Community Dentistry and Oral Epidemiology, 23, 356-359.
Venham, L., Bengston, D., & Cipes, M. (1977). Children’s response to sequential dental
visits. Journal of Dental Research, 56, 454-459.
Versloot, J., Veerkamp, J.S.J., & Hoogstraten, J. (2008). Dental anxiety and
psychological functioning in children: Its relationship with behaviour during
treatment. European Archives of Paediatric Dentistry, 9 (Suppl. 1), 36-40.
Waldman, H.B., Fenton, S.J., Perlman, S.P., & Cinotti, D.A. (2005). Preparing dental
graduates to provide care to individuals with special needs. Journal of Dental
Education, 69, 249-254.
Waldman, H.B. & Perlman, S.P. (2001). Commuity-based dental services for patients
with special needs. New York State Dental Journal, 67, 39-42.
Waldman, H.B., Perlman, S.P., & Wong, A. (2008). Providing dental care for the patient
with autism. California Dental Association Journal, 36, 663-670.
Weil, T.N., Bagramian, R.A., Inglehart, M.R. (2011). Treating patients with autism
spectrum disorder - SCDA members' attitudes and behavior. Special Care in
Dentistry, 31, 8-17.
212
Weil, T.N., & Inglehart, M.R. (2010). Dental education and dentists’ attitudes and
behavior concerning patients with autism. Journal of Dental Education, 74, 1294-
1307.
Weiner, A.A., & Weinstein, P. (1995). Dentists' knowledge, attitudes, and assessment
practices in relation to fearful dental patients: A pilot study. General Dentistry, 43,
164-168.
Weisbrot, D.M., Gadow, K.D., DeVincent, C.J., & Pomeroy, J. (2005). The presentation
of anxiety in children with pervasive developmental disorders. Journal of Child
and Adolescent Psychoparmacology, 15, 477-496.
Wengel, T., Hanlon-Dearman, A.C., & Fjeldsted, B. (2011). Sleep and sensory
characteristics in young children with Fetal Alcohol Spectrum Disorder. Journal of
Developmental and Behavioral Pediatrics, 32, 384-392.
Wilbarger, J., Gunnar, M., Schneider, M., & Pollak, S. (2010). Sensory processing in
internationally adopted, post-institutionalized children. Journal of Child
Psychology and Psychiatry, 41, 1105-1114.
Williams, K.S. (2009). Autism and the clinical implications for dental hygiene. Access,
23, 34-35.
Wilson, K.I. (1992). Treatment accessibility for physically and mental handicapped
people – a review of the literature. Community Dental Health, 9, 187-192.
Woolgrove, J., & Cumberbatch, G. (1986). Dental anxiety and regularity of dental
attendance. Journal of Dentistry, 14, 209-213.
Xu, F., & Lu, B. (2011). Prospective association of periodontal disease with
cardiovascular and all-cause mortality: NHANES III follow-up study.
Atherosclerosis, 218, 536-542.
Survey No. __________
1
IRB Approval: HS-09-00597, Version date: 11/19/09
APPENDIX A: STUDY 1 & 2 – Dental Care in Children Survey (English)
Child and Family Information
1. What is your child’s age? (Please mark closest accurate age)
2.0-4.11 5.0-7.11 8.0-10.11 11.0-13.11 14.0 and older
2. What is your child’s gender, height and weight?
Gender: Male Female Height: _________ Weight: _________
3. Is your child:
Hispanic, Latino
Not Hispanic, not Latino
4. What is your child’s race? (Please mark all that apply)
American Indian or Alaska native
Asian
Black or African American
Native American or other Pacific Islander
White, Caucasian
5. What is your relationship to this child?
Mother
Father
Other family member
Guardian
6. Please mark the highest level of education earned by:
High School/GED College Graduate degree or above
Mother/Guardian
Father/Guardian
7. My child:
Is typical developing Has special needs
If your child has special needs, please state his or her diagnosis/diagnoses:
_________________________________________________________________
_________________________________________________________________
_________________________________________________________________
8. My child is able to indicate his/her needs or wants using: (Please mark most accurate)
Gestures
Single words or phrases
Sentences
Screaming and/or yelling
My child is unable to communicate his/her needs or wants
Other, please state: ____________________________________________________
213
Survey No. __________
2
IRB Approval: HS-09-00597, Version date: 11/19/09
Dental Care Questions
9. Rate your child from 1(not oversensitive) to 5 (very oversensitive) regarding their
sensitivity to certain types of sensory stimuli:
1 (not
oversensitive)
2 3 4
5 (very
oversensitive)
Touch 1 2 3 4 5
Oral (mouth) 1 2 3 4 5
Taste 1 2 3 4 5
Smell 1 2 3 4 5
Sound 1 2 3 4 5
Vibration 1 2 3 4 5
Movement 1 2 3 4 5
Light 1 2 3 4 5
10. Does your child have any habits that may affect his or her teeth? (Mark all that apply)
Pica (eating non-edible substances or objects such as gravel, pens, etc)
Teeth grinding (bruxism)
TMJ (jaw pain)
Pocketing food while eating (child keeps food in his or her mouth)
Other, please state: ____________________________________________________
None
11. Cavities and Tooth Extractions
How many baby-teeth cavities has
your child had?
0 1 2 3 4
I don’t
know
How many permanent-teeth cavities
has your child had?
0 1 2 3 4
I don’t
know
How many baby teeth has your child
had pulled due to tooth decay?
0 1 2 3 4
I don’t
know
How many permanent teeth has your
child had pulled due to tooth decay?
0 1 2 3 4
I don’t
know
12. Frequency of Toothbrushing
On average, how many times
per day do you or your child
brush his/her teeth?
0 1 2 3+
On average, how many days
per week do you or your child
brush his or her teeth?
0 1 2 3 4 5 6 7
13. Which of the following best describes your child’s tooth brushing habits?
Mark one statement that best applies.
I or a family member always brushes my child’s teeth
I or a family member provides some physical assistance to my child
I or a family member stands near my child and provides verbal reminders
My child is independent in brushing his or her own teeth
214
Survey No. __________
3
IRB Approval: HS-09-00597, Version date: 11/19/09
14. Do you have difficulty with your child’s oral care on a daily basis (either your
child brushing teeth independently or an adult brushing for them)?
Yes No
a. If yes, why? (mark all that apply)
My child dislikes the taste or texture of toothpaste
My child dislikes the feeling of the toothbrush in his/her mouth
My child gags during tooth brushing
Other, please state: ______________________________________________
15. Frequency of Teeth-cleaning at the Dentist
How many times has your child
been to the dentist to have
his/her teeth cleaned in the last
12 months?
0 1 2 3+
How many times a year does
your dentist recommend having
your child’s teeth cleaned?
0 1 2 3+
16. In your opinion, rate your child’s experience during your last cleaning at the dentist:
1(bad
experience)
2
3 (neutral
experience)
4
5 (pleasant
experience)
N/A (My child was sedated)
17. If your child had to go to the dentist tomorrow to have his/her teeth cleaned, how
would your child feel about it?
My child would look forward to it as a reasonably enjoyable experience
My child wouldn’t care one way or the other
My child would be a little uneasy about it
My child would be afraid
My child would be extremely afraid
18. Based on your child’s reactions/behaviors to going to the dentist, how difficult is
it to have the dentist or hygienist clean your child’s teeth?
1(not at all
difficult)
2 3 4
5 (extremely
difficult)
19. At the dentist’s office, is your child afraid of, dislike, or complain about:
(Mark all that apply)
Dentist drilling
Bright lights
Loud sounds
Having someone put instruments in his/her mouth
Leaning back in the dentist’s chair
Smells
None of the above
215
Survey No. __________
4
IRB Approval: HS-09-00597, Version date: 11/19/09
20. Has your child ever required dental treatment under general anesthesia, sedation
or other drugs for routine care such as dental cleaning?
Yes No
a. If yes, what was the reasoning for that choice? (Mark all that apply)
Behavior difficulties
Extreme anxiety
Inability to cooperate with dentist
21. Does your child’s anxiety or response to dental treatment discourage you from
having regular dental check-ups?
Yes No
22. When your child is at the dentist, do any of the following behaviors increase?
(Mark all that apply)
Uncooperative behaviors
Sensory sensitivities
Self-stimulatory behaviors
Other, please state: ____________________________________________________
No
23. Has your dental practitioner ever used restraint (i.e.: holding your child down,
either with straps, etc. or with the assistance of another person) in order to clean
your child’s teeth?
Never Rarely Sometimes Often Almost always
24. Have you ever experienced difficulty in locating a dentist willing to provide your
child with care?
1(no difficulty) 2 3 4
5 (extreme
difficulty)
25. Has your child ever been refused treatment by a dental provider?
In the past 12 months? Yes No
More than 12 months ago? Yes No
a. If so, has the dental practitioner provided given any reasons for refusing
services? (Mark all that apply)
Behavior problems
Inadequate financial compensation
Inadequate dental training for working with children with special health care needs
Dentist did not have hospital/surgical privileges
Stated that procedures take much longer
Doesn’t take my insurance
Other, please state: ____________________________________________
Other, please state: ____________________________________________
No reason
216
Survey No. __________
5
IRB Approval: HS-09-00597, Version date: 11/19/09
26. What kind of dental insurance does your child have?
Medi-Cal/Denti-Cal
Private dental insurance
I pay for dental care myself
None
I don’t know
27. Do finances limit the number of times you take your child to the dentist per year?
Yes No
28. How many days in the past 12 months has your child missed school or preferred
activities due to dental-related pain or discomfort?
______________days
29. Has your child ever had tooth decay that led to problems in eating (nutrition) or
speaking?
Yes No
30. Would you like more information regarding proper dental hygiene care
techniques such as (mark all that apply):
Reducing sensory sensitivity for dental care
Tooth brushing and flossing (tooth care)
Eating healthy foods
Obtaining regular oral health care
Locating dentists willing to work with your child
31. How could dental services be improved for your child?
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
--------------------------------------------------------------------------------------------------------------------------
Autism and Dental Care
We are particularly interested in dental care in children with Autism Spectrum
Disorder (ASD). If your child has or is being considered for a diagnosis of Autism-
Spectrum Disorder (Ie: Autism, Asperger’s Syndrome, Rett’s Disorder or PDD-NOS),
please continue below.
32. Does your child have a diagnosis on the Autism Spectrum? (Mark all that apply)
Autism Asperger’s Syndrome Rett’s Disorder
PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified)
No current autism spectrum diagnosis, but being considered for one
No autism spectrum diagnosis
217
Survey No. __________
6
IRB Approval: HS-09-00597, Version date: 11/19/09
33. On a scale of 1 (strongly disagree) to 5 (strongly agree), please mark the following:
Strongly Somewhat Strongly
disagree agree agree
My child’s behavioral
difficulties (i.e.: refusing to
open mouth, screaming, not
cooperating at dentist’s office,
etc.) make dental
appointments challenging
1 2 3 4 5 N/A
My child’s sensory
sensitivities (i.e.: difficulty
with bright lights, loud waiting
room/instruments for cleaning,
managing new tactile/taste
sensations, etc.) make dental
appointments challenging
1 2 3 4 5 N/A
34. If you have more than one child, has it been more difficult to find and access dental
services for your child with ASD compared to his or her typically developing sibling(s)?
Yes No Not applicable
If yes, please explain and compare (be specific): __________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
35. If you have more than one child, have visits to the dentist been more stressful for
your child with ASD compared to his or her typically developing sibling(s)?
Yes No Not applicable
If yes, please explain and compare (be specific): __________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
36. If you have more than one child, is oral care (i.e.: toothbrushing) more difficult for
your child with ASD compared to his or her typically developing sibling(s)?
Yes No Not applicable
If yes, please explain and compare (be specific): __________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
37. Is your dental practitioner specialized in working with the population of children
with ASD or other special needs?
Yes No I don’t know
218
APPENDIX B: STUDY 1 – Survey Study IRB (HSIRB) Approval Letter
Proposal #HS-09-00597
University of Southern California Health Sciences Campus
Institutional Review Board
LAC+USC Medical Center, Intern’s Residence Dorm #425
2020 Zonal Avenue. Los Angeles, CA 90033
(323) 223-2340 phone
(323) 224-8389 fax
irb@usc.edu
Date: Mon Dec 14 07:07:17 2009
To: Leah Stein
OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7)
From: Health Sciences Institutional Review Board
Interns Residence Dorm, Room #425
2020 Zonal Avenue
Los Angeles, CA 90033
(323) 223-2340
TITLE OF PROPOSAL:
Oral Care in Children with ASD (Oral Care in Children with ASD)
Action Date: 12/13/2009 Action Taken: Approve
Committee: Institutional Review Board Vice
Chairman
Note: Your iStar application and attachments were reviewed by the expedited
mechanism by Dr. Deirdre Anglin December 13, 2009.
The proposed changes qualify for expedited review according to 45CFR46.110
(b) (2) minor changes in previously approved research during the period (of one
year or less) for which approval is authorized. The proposed changes were
APPROVED.
The materials submitted and considered for review of this project included:
1. Revised iStar Application, dated 12/11/09
2. Response to contingencies from 11/12/09 and 12/8/09
219
3. Revised Information Sheet/Recruitment Flyer (English and Spanish)
4. Permission Letter from Pediatric Therapy Network, dated 11/17/09
5. Permission Letter from Therapy West, dated 11/18/09
All contingencies of 11/12/09 and 12/8/09 have been satisfied.
Based on the information submitted for review, this study is exempt from 45
CFR 46 according to §46.101(b) as category 2.
The Revised Information Sheet in English and Spanish were APPROVED.
As a research which is considered exempt according to §46.101(b) this project is
not subject to requirements for continuing review. You are authorized to conduct
this research as approved.
The HIPAA Privacy Rule will not apply to this research. The investigator
certifies that he/she is not accessing, using or obtaining protected (i.e.,
identifiable) health information held by: a) a health care provider (e.g., physician
or other health care practitioner, hospital, clinic, nursing home); b) health plan
(e.g., group health plan, insurance company, (HMO); or c) health care
clearinghouse (e.g., billing service) that is governed by the HIPAA privacy
federal regulations.
Attachments:
This is an auto-generated email. Please do not respond directly to this message using the "reply" address. A response sent
in this manner cannot be answered. If you have further questions, please contact your IRB Administrator or IRB/CCI office.
The contents of this email are confidential and intended for the specified recipients only. If you have received this email in
error, please notify istar@usc.edu and delete this message.
220
APPENDIX C: STUDY 2 – Focus Group Study IRB (HSIRB) Approval Letter
Proposal #HS-09-00691
University of Southern California Health Sciences Campus
Institutional Review Board
LAC+USC Medical Center, General Hospital Suite 4700
1200 North State Street, Los Angeles, CA 90033
(323) 223-2340 phone
(323) 224-8389 fax
irb@usc.edu
Date: Sep 27, 2013, 08:13am
To: Leah Stein
OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7)
From: Health Sciences Institutional Review Board
General Hospital Suite 4700
1200 North State Street
Los Angeles, CA 90033
(323) 223-2340
TITLE OF PROPOSAL:
Oral Care in Children with ASD: Focus Group
Continuing Review: HS-09-00691-CR003 (FG Parents - Renewal 09.2013)
Action Date: 9/25/2013 Action Taken: Approved
Committee: Institutional Review Board Vice
Chairman
Note: Your iStar Continuing Review Application received by the IRB on 9/24/2013
was reviewed by Dr. Robert Larsen on 9/25/2013.
The Continuing Review was submitted for expedited review according to 45
CFR 46.110(b) under Research Category 7. The Continuing Review was
APPROVED.
221
I M P O R T A N T N E W I N F O R M A T I O N:
The IRB reviewed this study and because the study has no funding and the
risk to participants is minimal, the IRB has applied the USC Human
Research Protection Program Flexibility Policy under Exempt Category 8.
This study is not subject to the federal regulations at 45 CFR 46. You are
authorized to conduct this research as approved. This project is not subject
to requirements for continuing review.
Subject protections and ethical standards expected of exempt research will
apply to new exempt categories.
NOTE: If there are modifications that increase risk to subjects or the
funding status of this research is to change, you are required to submit an
amendment to the IRB for review and approval.
NOTIFICATION OF THE PRINCIPAL INVESTIGATOR:
The Office of Compliance database cannot verify the HIPAA certification of
Tiffany Lam and Lauren St. Hilaire. Information concerning the required HIPAA
training and access to the online course are provided at the USC Office of
Compliance website Http://ooc.usc.edu/PrivacySecurity/HIPAAPrivReg.cfm.
Attachments:
Approved ICs and HIPAA forms: view
This is an auto-generated email. Please do not respond directly to this message using the "reply"
address. A response sent in this manner cannot be answered. If you have further questions, please
contact your IRB Administrator or IRB/CCI office.
The contents of this email are confidential and intended for the specified recipients only. If you
have received this email in error, please notify istar@usc.edu and delete this message.
222
APPENDIX D: STUDY 3 – EDA Study IRB (CCI) Approval Letter
Oct 08, 2013, 01:14pm
To: Sharon Cermak
OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7)
Jose Polido
DENTISTRY - CHLA
From: Robert D. Bart, M.D.
Chair Designee, Committee on Clinical Investigations
Re: CCI-11-00250 (Sharon Cermak
OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7))
R34 Sensory Adapted Dental Environments to Enhance Oral Health in Children with
Autism Spectrum Disorders (the SADE study)
NOTICE OF CONTINUING IRB APPROVAL - DATA ANALYSIS ONLY
(CCI Reference: R34 SADE - Renewal 9-2013 - CCI-11-00250-CR002)
Valid from: 10/7/2013; Expires on: 10/6/2014
Document(s) Reviewed: iStar Continuing Review Application CR002 (Version Date:
9/25/2013)
iStar Application (Version Date: 12/3/2012)
The continuing review application was reviewed by a member of the Children's Hospital Los
Angeles Committee on Clinical Investigations (CCI). It was previously determined that the
research involves no greater than minimal risk, and satisfies the criteria of 45 CFR 46.404/21
CFR 50.51. The study has been approved for an additional year for data analysis only per 45
CFR 46.110/21 CFR 56.110, Federal Register category 8(c).
Children's Hospital Los Angeles is committed to protecting the rights and welfare of human
research subjects in all human research which is: 1) sponsored by CHLA; 2) performed by
CHLA faculty or staff; 3) performed using CHLA facilities; and/or 4) performed using CHLA
patients or nonpublic information about CHLA patients. The CCI is the Institutional Review
Board (IRB) at CHLA. The CCI is organized and operates according to Federal regulations (45
CFR 46 and 21 CFR 56) and ethical principles. CHLA has negotiated a Federal-Wide Assurance
(00001914) with the Office for Human Research Protections and operates according to
California regulations.
223
IRB approval for this study will expire on the expiration date noted above. In order to continue
the research beyond the expiration date, a Continuing Review application must be received by
the HSPP office at least 8 weeks before the expiration date, and continuation of the study must
be approved by the CCI. Similarly, a Final Report application must be submitted in order to close
the study.
This is an auto-generated email. Please do not respond directly to this message using the "reply"
address. A response sent in this manner cannot be answered. If you have further questions, please
contact your IRB Administrator or IRB office.
The contents of this email are confidential and intended for the specified recipients only. If you
have received this email in error, please notify istar@usc.edu and delete this message.
224
APPENDIX E: STUDY 3 – EDA Study IRB (HSIRB) Approval Letter
Proposal #HS-12-00521
University of Southern California Health Sciences Campus
Institutional Review Board
LAC+USC Medical Center, General Hospital Suite 4700
1200 North State Street, Los Angeles, CA 90033
(323) 223-2340 phone
(323) 224-8389 fax
irb@usc.edu
Date: Sep 05, 2012, 02:38pm
To: Sharon Cermak
OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY (DIVISION 7)
From: Health Sciences Institutional Review Board
General Hospital Suite 4700
1200 North State Street
Los Angeles, CA 90033
(323) 223-2340
TITLE OF PROPOSAL:
R34 Sensory Adapted Dental Environments to Enhance Oral Health in Children with Autism
Spectrum Disorders (the SADE study) (R34 Sensory Adapted Dental Environments (SADE) )
Action Date: 9/5/2012 Action Taken: Approve
Committee: Institutional Review Board Chairman
Note: Study #HS-12-00521 has undergone facilitated Institutional Review Board
review by Dr. Darcy Spicer on September 5, 2012.
The USC Health Sciences IRB (HSIRB) accepts the CHLA Committee on
Clinical Investigations (CCI) protocol review. The HSIRB (FWA00005906) has
designated the CCI (FWA00001914) as the IRB of record for this study.
225
The Principal Investigator must be aware of their post-approval responsibilities
which include:
1. Reporting Internal Adverse Events: You must inform the HSIRB of any
unanticipated adverse event or injury no later than ten (10) business days
following the time it becomes known that a subject suffered an adverse
event/injury. You must report the event to the IRB using the Reportable Event
Application in iStar. HSIRB policy dictates that adverse events should be
reported to the HSIRB only if the events are serious, unexpected, and related or
possibly related (exceptions: all deaths, regardless of cause; events that are more
serious/frequent than expected; and any events mandated by a cooperative group
to be reported). It is not necessary to submit serious adverse events that are either
expected or not related.
2. Personnel or Site Changes: Submit any local personnel or site changes to the
HSIRB as they arise.
3. Other Local Alterations and Updates: Any locally initiated alterations/updates,
such as recruitment materials, must be submitted to the HSIRB for review.
4. Protocol Amendments/Revisions: Do not send protocol amendments to the
HSIRB. Whenever the Lead Investigator initiates protocol
amendments/revisions, you must use only the CCI-approved version available
from CCI on iStar. These amendments/revisions are not required to be submitted
to the HSIRB, unless changes to the informed consent are needed. If informed
consent changes are required, submit the revised document(s) to the HSIRB for
review and translation, using the iStar amendment process.
5. Study Closure: To close the study at this site, submit a memo to HSIRB. No
continuing review form is needed.
Approval of the study will expire on November 1, 2012.
Attachments:
This is an auto-generated email. Please do not respond directly to this message using the "reply"
address. A response sent in this manner cannot be answered. If you have further questions, please
contact your IRB Administrator or IRB/CCI office.
The contents of this email are confidential and intended for the specified recipients only. If you
have received this email in error, please notify istar@usc.edu and delete this message.
226
CCI-11-00250, Version date: 3/2/12
Subject ID: ______________
Data Collector: ___________; date: __________
Data Entry: ______________; date: __________
Data Entry: ______________; date: __________
APPENDIX F: STUDY 3 – Measure of General Anxiety
Children and Adolescent Symptom Inventory - 4, Anxiety Scale (CASI-Anx)
YOUR CHILD…:
0
(Never)
1
(Sometimes)
2
(Often)
3
(Very Often)
1 Is over concerned about abilities
2 Has difficulty controlling worries
3 Acts restless or edgy
4
Is extremely tense or unable to
relax
5 Has difficulty falling asleep
6 Is overly fearful of specific objects
7 Complains about heart pounding
8
Cannot get distressing thoughts out
of mind
9 Complains about physical problems
10 Worries about physical health
11
Is more anxious in social situations
than most children
12 Is excessively shy with peers
13
Gets very upset when expects to be
separated from parents
14
Worries that parents will be hurt or
leave and not be back
15
Worries that some disaster will
separate him/her from parents
16
Tries to avoid going to school to
stay with parents
17
Worries about being left home
alone or with a sitter
18
Afraid to go to sleep unless near
parents
19
Has nightmares about being
separated from parents
20
Complains about feeling sick when
expects separation from parents
227
CCI-11-00250, Version date: 3/2/12
Subject ID: ______________
Data Collector: ___________; date: __________
Data Entry: ______________; date: __________
Data Entry: ______________; date: __________
APPENDIX G: STUDY 3 – Measure of Dental Anxiety
CHILDREN’S FEAR SURVEY SCHEDULE – DENTAL SUBSCALE (parent)
Instructions: Please answer how afraid your child is of the items below.
Items
Not
afraid
at all
1
A little
afraid
2
A fair
amount
3
Pretty
much
afraid
4
Very
afraid
5
1) Is your child afraid of dentists?
2) Is your child afraid of doctors?
3) Is your child afraid of injections
(shots)?
4) Is your child afraid of having
somebody examine his/her
mouth?
5) Is your child afraid of having to
open his/her mouth?
6) Is your child afraid of having a
stranger touch him/her?
7) Is your child afraid of having
somebody look at him/her?
8) Is your child afraid of the dentist
drilling?
9) Is your child afraid of the sight of
the dentist drilling?
10) Is your child afraid of the noise of
the dentist drilling?
11) Is your child afraid of having
somebody put instruments in
his/her mouth?
12) Is your child afraid of choking?
13) Is your child afraid of having to go
to the hospital?
14) Is your child afraid of people in
white uniforms?
15) Is your child afraid of having the
nurse clean his/her teeth?
228
CCI-11-00250, Version date: 3/2/12
Subject ID: ______________
Data Collector: ___________; date: __________
Data Entry: ______________; date: __________
APPENDIX H: STUDY 3 – Measure of Anxiety and Cooperation
(MODIFIED) ANXIETY AND COOPERATIVE BEHAVIOR SCALE
Completed by (dentist name): __________________________________________
Was the child:
0
Relaxed, smiling, willing, able to converse, best possible working conditions.
Displays the behavior desired by the dentist spontaneously, or immediately
upon being asked.
1
Uneasy, concerned. During stressful procedure may protest briefly and
quickly to indicate discomfort. Hands remain down or partially raised to
signal discomfort. Child willing and able to interpret experiences as
requested. Tense facial expression. Breathing is something held in (“high
chest”). Capable of cooperating well with treatment.
2
Tense. Tone of voice, questions and answers reflect anxiety. During
stressful procedure, verbal protest, (quiet) crying, hands tense and raised
but not interfering much. Child interprets situation with reasonable accuracy
and continues to work to cope with his/her anxiety. Protest more distracting
and troublesome. Child still complies with request to cooperate. Continuity is
undisturbed.
3
Reluctant to accept the treatment situation, difficulty in assessing situational
threat. Pronounced verbal protest, crying. Using hands to try to stop
procedure. Protest out of proportion to threat or is expressed well before the
threat. Copes with situation with great reluctance. Treatment proceeds with
difficulty.
4
Interference of anxiety and ability to assess situation. General crying not
related to treatment. Prominent body movements, sometimes needing
physical restraint. Child can be reached through verbal communication, and
eventually with reluctance and great effort begins to work to cope. Protest
disrupts procedure.
5
Out of contact with the reality of the threat. Hard, loud crying. Screaming,
swearing. Unable to listen to verbal communication. Regardless of age,
reverts to primitive flight responses. Actively involved in escape behavior.
Physical restraint required.
229
CCI-11-00250, Version date: 3/2/12
Subject ID: ______________
Data Collector: ___________; date: __________
Data Entry: ______________; date: __________
Data Entry: ______________; date: __________
APPENDIX I: STUDY 3 – Measure of Anxiety and Cooperation
FRANKL SCALE
Completed by (dentist name): __________________________________________
Was the child:
1
Definitely Negative: refusal of treatment, forceful crying, fearfulness or any
other overt evidence of extreme negativism.
2
Negative: reluctance to accept treatment, uncooperativeness, some
evidence of negative attitude but not pronounced (sullen, withdrawn).
3
Positive: acceptance of treatment, cautious behavior at times, willingness to
comply with the dentist, at times with reservation, but patient follows the
dentist’s directions cooperatively.
4
Definitely Positive: good rapport with the dentist, interest in the dental
procedures, laughter and enjoyment.
230
CCI-11-00250, Version date: 8/15/12
Subject ID: ______________
Data Collector: ___________; date: __________
Data Entry: ______________; date: __________
Data Entry: ______________; date: __________
APPENDIX J: STUDY 3 – Measure of Overt Distress Behavior in Dental Environment
CHILDREN’S DENTAL BEHAVIOR RATING SCALE (CDBRS) DATA COLLECTION FORM
TREATMENT (circle): 1 2
ENVIRONMENT (circle): RDE SADE
Time coded:
Measure Score
Total sum for Each Variable across 5 minute coding interval
Head Movement (0/1) / 5
Forehead Movement (0/1) / 5
Mouth Movement (0/1) / 5
Whimper, Cry, Scream (Severity, 0-3) / 15
Verbal Stall or Delay (Severity, 0-3) / 15
Maximum # of Hands (throughout entire treatment)
Maximum # of Hands (during 5 minute coding interval)
Use of Restraint Yes / No
What types of restraint were used? (Papoose Board, Bite
Stick, Other)
Total time of treatment
Dentist Name
Video-recorder Name
Video-coder Name
Second coder Name (if applicable)
TREATMENT (circle): 1 2
ENVIRONMENT (circle): RDE SADE
Time coded:
Measure Score
Total sum for Each Variable across 5 minute coding interval
Head Movement (0/1) / 5
Forehead Movement (0/1) / 5
Mouth Movement (0/1) / 5
Whimper, Cry, Scream (Severity, 0-3) / 15
Verbal Stall or Delay (Severity, 0-3) / 15
Maximum # of Hands (throughout entire treatment)
Maximum # of Hands (during 5 minute coding interval)
Use of Restraint Yes / No
What types of restraint were used? (Papoose Board, Bite
Stick, Other)
Total time of treatment
Dentist Name
Video-recorder Name
Video-coder Name
Second coder Name (if applicable)
231
Abstract (if available)
Abstract
It is indisputable that good oral health is important to both psychological and physiological health. However, despite the importance of oral care, disparities exist for children with special health care needs (CSHCNs) in the access to and practice of oral care in the United States, with oral care being the most frequently cited unmet health care need
Linked assets
University of Southern California Dissertations and Theses
Conceptually similar
PDF
The intersection of oral care experiences, culture, and autism for Black American families: a mixed-methods study
PDF
Sleep problems, sensory difficulties, and social participation in children with autism spectrum disorders
PDF
Social and motor skills in autism spectrum disorder & developmental coordination disorder: functional & structural neurobiology
PDF
Barriers to accessing support services in employment and health care for adults with autism spectrum disorders: a qualitative study
PDF
Social interaction moderates enjoyment and perception of physical activity during exergame play in young adults with autism spectrum disorders
PDF
Autonomic and behavioral responses of children with autism to auditory stimulation
PDF
The AIDEN acronym: increasing nurse anesthetists' knowledge of preoperative care for children with autism spectrum disorder
PDF
The AIDEN acronym: increasing nurse anesthetists' knowledge of preoperative care for children with autism spectrum disorder
PDF
Core, social and moral disgust processing in youth with autism spectrum disorder (ASD)
PDF
Data mining: gathering data from a pediatric occupational therapy practice
PDF
The AIDEN acronym: Increasing nurse anesthetists’ knowledge of preoperative care for children with autism spectrum disorder
PDF
Experience modulates neural activity during action understanding: exploring sensorimotor and social cognitive interactions
PDF
Effects of preferred physical activity on stereotypical behaviors in children with autism spectrum disorder: adapting from in-person to telehealth
PDF
Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography
PDF
Developmental trajectories of sensory patterns in young children with and without autism spectrum disorder: a longitudinal population-based study from infancy to school age
PDF
Supportive care needs of low-income Latina breast cancer survivors
PDF
Robot, my companion: children with autism take part in robotic experiments
PDF
Behavioral and neural influences of interoception and alexithymia on emotional empathy in autism spectrum disorder
PDF
Optimizing participation of military service members with chronic symptoms after mild traumatic brain injury
PDF
Investigation of the neural mechanisms of sensorimotor integration in children with autism
Asset Metadata
Creator
Stein, Leah I.
(author)
Core Title
Oral care and sensory sensitivities in children with autism spectrum disorders
School
School of Dentistry
Degree
Doctor of Philosophy
Degree Program
Occupational Science
Publication Date
11/11/2013
Defense Date
09/20/2013
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
autism spectrum disorder,Dental care,electrodermal activity,OAI-PMH Harvest,Occupational therapy,sensory integration,sensory processing
Format
application/pdf
(imt)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Cermak, Sharon A. (
committee chair
), Clark, Florence (
committee member
), Dawson, Michael Edward (
committee member
), Polido, Jose C. (
committee member
)
Creator Email
leahstein2@gmail.com,lstein@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-c3-346134
Unique identifier
UC11296460
Identifier
etd-SteinLeahI-2147.pdf (filename),usctheses-c3-346134 (legacy record id)
Legacy Identifier
etd-SteinLeahI-2147.pdf
Dmrecord
346134
Document Type
Dissertation
Format
application/pdf (imt)
Rights
Stein, Leah I.
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Access Conditions
The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the a...
Repository Name
University of Southern California Digital Library
Repository Location
USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA
Tags
autism spectrum disorder
electrodermal activity
sensory integration
sensory processing