University of Southern California Dissertations and Theses
Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography
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Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography
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Understanding Bilingual Latino Parents’ Experiences of their
Children’s Autism Services in Los Angeles:
A Critical Ethnography
Amber Michelle Angell
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
May 13, 2016
I am grateful to all who have guided, mentored, and supported me on this journey.
First and foremost, I am deeply grateful to the families whose stories I had the
privilege to hear and share here. Thank you for entrusting them to me. I am especially
indebted to the mothers in the study who welcomed me so warmly into motherhood.
I would like to express my deep appreciation to the members of my dissertation
committee for the invaluable mentorship, counsel, and encouragement you have provided.
Special thanks to Dr. Olga Solomon, my chair and advisor, for your commitment to guiding
me on my path to becoming a scholar, your generosity in sharing all kinds of knowledge,
and your unwavering belief in me throughout the process. Thanks also to Dr. Gelya Frank,
for seeing great potential in me and for always reminding and inspiring me to see the
bigger picture. Thanks to Dr. Mary Lawlor, for your many gentle reminders to listen for
stories and to always return to the perspective of lived experience. And thanks to Dr.
Cheryl Mattingly; your enthusiasm for narrative and elegant writing have continually
inspired and taught me.
This research would not have been possible without the generous support of the
Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, support that
was extended both through funding and through the provision of a vibrant, enriching
community of scholars and exceptional learning environment. This research was also
supported by the Southern California Clinical Translational Science Institute
(NIH/NCRR/NCATS # TL1TR000132); the USC Diploma in Innovation; and the Society for
the Study of Occupation: USA Student Research Grant.
Thanks to Michelle Elliot and Teddie Genter for your friendship as we embarked
upon this journey together and after we parted ways. Michelle, special thanks for your
valuable comments on parts of this dissertation, despite your own busy schedule. Thanks
to Jennifer Chen for help creating the ‘bus stories’ table. Thanks to Daniella and Lucía
Floríndez for talking “Latino culture” with me.
Finally, my heartfelt gratitude goes to my family: To Susan, the “family storyteller,”
for your steadfast reminders to – insistence on – maintain what is really important in life; to
Joe, who has never for a moment hesitated before saying yes, even to big life changes, for
the sake of my academic career, and who always already saw in me the scholar I was yet
becoming; and to L.C.T., who came barreling into this world in the middle of this process,
turning everything on its head, and teaching me to see, think, and understand differently.
Table of Contents
List of Tables and Figures........................................................................................................viii
Introduction and Background................................................................................................9
Latino Children with Autism: Diagnosis and Service Disparities 9
The Autism Services Landscape in California 10
Potential Causes of Autism Disparities 14
The Role of Cultural Stereotypes in the Reproduction of Disparities 17
“The Danger of a Single Story” 20
Latino Parents’ Multiple Cultural Stories 21
Bilingual, Bicultural Families 23
The Study 26
Research Questions 29
Study Design 30
Theoretical Framework: A ‘Critical Occupational Science’
Critical social science 32
Critical occupational science 34
Political economy 35
Narrative phenomenology 36
Critical examination of discursive practices 39
Ethical Approval and Consent 41
Data Management and Confidentiality 44
Data Collection and Data Corpus 46
Data Analysis 48
Expert versus Novice 53
Parents’ Experiences 55
Disparities and Parental Blame 56
Contribution to Occupational Science and Occupational Therapy 58
Navigating Systems and Managing Services as a
‘Vital but Invisible’ Occupation 58
Conceptualizing the Occupation of Managing Autism Services 59
“I Have a Lot of Faith in Everything We’re Doing” 60
The Role of Professionals in Parents’ Experiences of their
Children’s Services 62
“I mean, it’s very generic.” 62
“It’s almost like you gotta do everything on your own.” 63
“He gave us this article on autism.” 67
Professionals who Connect with the Child 71
Managing Autism Services within the Flow of ‘Doing Family’ 72
‘Doing Family’ in the Absence of Services and Supports 72
Managing Services as a Concern for Occupational Justice 73
‘Doing Family’: Disparities, Opportunities, and Capabilities in Latino Families’
Experiences of their Children’s Autism Services.............................................................76
This manuscript has been submitted to a journal with co-authors Gelya
Frank, PhD, and Olga Solomon, PhD and is currently under peer-review.
Occupational Justice and Autism Services 80
Operationalizing Occupational Justice: Opportunity and Capability 81
Autism Disparities and the Discourse of ‘Cultural Deficit’ 82
Studying Families Occupationally: Theory and Method 84
Recruitment and Participants 84
Data Collection and Analysis 85
Resisting Encroachment on ‘Doing Family’ 86
Orchestrating Family Routines 90
“You Have to Be Ready for Battle”: Latino Parents’ Experiences of their Children’s
Autism Services in the Era of Austerity...............................................................................94
The ‘Autism Parent’ as a ‘Good’ Parent 99
The ‘Autism Parent’ as Tacitly White and Middle-Class 101
Recruitment, Participants, and Consent 103
Data Collection and Data Corpus 104
Data Analysis 104
I. “We’re Your Typical Autism Parents, You Know?
We’ve Learned How to Fight.” 105
“So the first time he got me on that.” 105
“The bottom line for this district is a dollar.” 106
“They pretty much stay quiet on both sides,
which doesn’t help the parent.” 109
“It became personal for her.” 111
“She brought up one of the laws.” 112
“If I was just a different ethnicity, would she
have treated me the same?” 115
II. “Why Do I Have to Fight the School District Like That?” 118
“We wanna keep this as amicable as possible.” 118
“They don’t like when you challenge them, I guess.” 119
“It scares me to think that they are hitting him
and I don’t know.” 121
III. “Be Mean, but Kiss Butt. Here’s Our Battle Plan.” 122
“They’re looking at you as an emotional parent.” 122
School Bus Stories: Understanding Latino Parents’ Concerns about the Safety and
Independence of their Children with Autism Spectrum Disorder..............................127
Autism and “The Transport Situation” 130
(Re)conceptualizing Mobility and Participation for Individuals
with Autism 134
Disability, Dependency, and Independence 136
Latino Parents’ Presentations of Self vis-à-vis Cultural Assumptions 138
Recruitment and Consent 141
Study Design and Data Collection 142
Data Analysis 143
When Children are ‘Lost’ on the School Bus 147
Jayden’s story: The significance of broken trust 147
“We feel he’s being ignored.” 152
Mateo Jr.’s story: ‘Independence’ versus safety 157
“Eventually my son will be independent; that’s what I
foresee for him, obviously.” 162
Privatized Transportation and Responsibility 168
Conclusions and Implications..................................................................................................191
Manuscript 1: ‘Doing Family’ 191
Manuscript 2: “You Have to be Ready for Battle” 194
Manuscript 3: School Bus Stories 197
Managing Autism Services as an Issue of Relevance to
Occupational Justice 200
Phase 1 Interview Guides 238
Visual Timelines 239
Figure B1: Timeline Key 240
Figure B2: Timeline for Ben 241
Figure B3: Timeline for Gabriela 242
Figure B4: Timeline for Jayden 243
Figure B5: Timeline for Mateo Jr. 244
Figure B6: Timeline for Tanok 245
Encounter Form 246
List of Tables and Figures
Table 1.1: Study Design 31
Table 1.2: Participants 45
Table 1.3: Data Count (Data Points) 46
Table 1.4: Data Count (Time) 47
Table 1.5: Records per Child 48
Table 2: News Stories of Incidents Involving Individuals with
Autism and Other Developmental Disabilities on School Buses,
Public Transportation, and Paratransit Vehicles 173
Figure 1.1: Focal Children 45
Figure 1.2: Observation Sites 47
This dissertation research is a 12-month critical ethnographic study of the
experiences of 12 bilingual Latino families of children with autism spectrum disorder living
in Los Angeles County. Latino children in the United States experience disparities in autism
diagnosis and services compared to White children, but little is known about how their
families experience these disparities. The purpose of this study is to understand Latino
parents’ experiences of their children’s autism services, which include treatments,
interventions, and supports. The theoretical framework utilizes narrative phenomenology
(Mattingly, 2010), a theory of practice that privileges parents’ emic perspectives,
foregrounding the narrative shape and contingent nature of lived experience. Expanding
upon narrative phenomenology, this dissertation critically examines discourses that shape
parents’ occupational experiences related to their children’s autism services. Situated in a
‘critical moment’ in occupational science (Farias & Laliberte Rudman, 2016), this research
views the sociocultural, political economic context that shapes parents’ experiences of their
children’s autism services from the perspective of ‘life on the ground.’
The findings are presented in a ‘three-paper’ dissertation format, such that three
distinct analyses are written as standalone, publication-ready manuscripts. The unifying
thread throughout the three manuscripts is the work that parents did to obtain, maintain,
and manage their children’s autism services, which is conceptualized as an over-arching,
multi-faceted occupation of managing autism services. 1) “‘Doing Family’: Disparities,
Opportunities, and Capabilities in Latino Families’ Experiences of Their Children’s
utilizes an occupational analysis of family life to understand why Latino
parents opted out of state-funded behavioral interventions for their children. A critical
analysis revealed that parents opted out not because of a ‘cultural deficit,’ e.g., a lack of
understanding of the potential benefits of the intervention, but because of a structural
mismatch of services with the family’s occupational needs. The opportunity for behavior
therapy did not enable the families’ capability (Sen, 1999) to ‘do family’ in a way that was
meaningful to them. The findings show how the concepts of opportunity and capability can
support the operationalization of occupational justice. To remedy situations of
occupational injustice and reduce service disparities, opportunities, such as access to
services, must be delivered in a way that enables individuals and families to convert them
into capabilities. 2) “’You Have to Be Ready for Battle’: Latino Parents’ Experiences of
their Children’s Autism Services in the Era of Austerity” situates Latino parents’
experiences with systems of care within an ‘autism parent’ discourse in which parents,
usually mothers, ‘fight’ systems of care to ‘win’ services for their children. I argue that the
‘autism parent’ discourse is shaped by White, middle- and upper-class resources and
capital, and that the discourse obscures the double standard that Latino parents face: They
can fight for and possibly ‘win’ services but at great financial, emotional, and social cost; or
they can choose not to fight to ensure that professionals will not mistreat their children in
retaliation, but not ‘win’ the services they feel their children need and risk being labeled by
professionals as unaware of their children’s needs. 3) “School Bus Stories:
Understanding Latino Parents’ Concerns about the Safety and Independence of their
This manuscript has been submitted to a journal with co-authors Gelya Frank, PhD and Olga Solomon, PhD
and is currently under peer-review.
Children with Autism Spectrum Disorder” examines Latino parents’ experiences related
to their children’s public school transportation. Two bus stories, unrelated incidents in
which children with autism in the study were ‘lost’ while under the care of their school
district transportation departments, are presented as “theoretically critical cases” (Blatter,
2008). The bus stories represent two themes from the broader data corpus: The cost of
parents’ broken trust when they feel their children are placed in unsafe situations by
school district staff, and the tension parents experienced between their desires for their
children’s independence and safety. I critically examine school district professionals’
emphasis on children’s ‘independence,’ which is used to deny their requests for services
(e.g., a bus aide to assist the child). Findings reveal the need to address the independence
and safety of individuals with autism while taking school or public transportation.
I joined Fabiana, one of the mothers in the study, and her three children at Target
one summer morning. Mateo Jr. had just turned 5; Isabella would turn 4 in a week; and
Melanie was 2 years old. Mateo Jr. and Isabella both had diagnoses of autism. Fabiana,
knowing that I hoped to video the family in various settings as part of my ethnographic
data collection, had suggested that we meet at Target. Although Mateo Jr. and Isabella were
both in special education and qualified for an extended year program (i.e., summer school),
there were still six weeks, between the end of summer school and the new school year,
where they had no school, no therapies, and nothing to keep them occupied. Fabiana and
her husband had recently separated. During the week while he worked as a special
education high school teacher, she had to manage the three children by herself all day.
During this time of year, they went to Target as often as six times per week, perhaps
shopping for a few items, but primarily as an activity to break up the long day.
On that morning, I had expected that the visit might be cancelled, as I had received
an email in the middle of the night from Fabiana saying that she was in the emergency
room with stomach pain. Early the next morning, though, she texted to tell me that she
wanted to keep our appointment. When I met her at her car in the Target parking lot a few
hours later, Fabiana said she had been having stomach pains for about a week, and the
night before they had become unbearable, so her sister had stayed with her kids while her
parents took her to the emergency room. She showed me the large bruise on the inside of
her arm from her IV and said that the doctors still did not know what was wrong but had
given her nausea medication and sent her home. Fabiana said she was exhausted but
wanted to keep our appointment because she needed to “get the kids out of the house.” My
fieldnotes document my sense that perhaps she also needed adult company and
That morning, I knew that getting all three children safely from the car into Target
was a potentially precarious and fraught task. In the short time we had known each other,
Fabiana had already told me a particular story several times, one that clearly haunted her.
She had been in another Target parking lot with the three children, transferring Melanie
from the shopping cart to her car seat. Fabiana had described it this way:
So I go and I like, put [Melanie] in, and before I know it, I just hear like tires
screeching. (AA: (gasps) Oh my gosh.) And like a horn. And I'm like, "(Gasp!)"
I get up from my car and I'm like, "Oh my god!" So I turn around and
Isabella's just running...And some guy said, "Get your fucking kid!" And of
course, I was already like, "Oh my god." I don't wanna relive it, but (crying), I
was like (pause)...You know? And so I ran to get her, there's other people that
are shaking their heads. And I'm thinking in my head, okay, "You guys don't
know what I feel (crying). You guys don't know what I, ugh!...You guys don't
know what I go through.”...I ran and I grabbed her and Mateo's like, "Mommy!
Mommy! Mommy!" And I'm just like, "Just get in the car. Just get in the car."
So I put- I put him in, I buckled her in, I buckled all of them and I remember
sitting there and just crying cause I was just like, "Oh my gosh, she could've
This story, told to me several times, had prompted me to tell Fabiana that I would
meet her at her car for our Target visit, not only to video the process of getting into the
store, but also to provide another adult to help if needed. Fabiana held Isabella and
Melanie’s hands, and Mateo Jr. walked in front of them. As we approached the crosswalk in
front of the store, Mateo Jr. began walking into the crosswalk ahead of everyone, looking
only to his left. Fabiana said, “Do you see cars? Wait!” Mateo Jr. stopped. Fabiana said again,
“Do you see cars?” Mateo Jr. shook his head no. Fabiana said, “Over here,” pointing to her
right. Mateo Jr.’s head turned to look to his right. Fabiana said, “No? Let’s go.”
The five of us walked into Target, where Fabiana led the children to a special
shopping cart. It was a typical red Target shopping cart, but in front of it, on the end where
one would normally push the cart, was a large red plastic attachment that had two small
seats with seat belts. The following excerpt from the video transcript shows Fabiana’s
attempt to get all three children into their respective places in the shopping cart.
Mateo: Mommy, can I go get some pop-, Can I go get some popcorn?
Fabiana: (Approaches the cart; to kids:) Wait.
Mateo: Going to walk?
Isabella: [Mommy, can I walk?
Fabiana: [And...sit. (Melanie sits in the cart.)
Isabella: Can I walk?
Isabella: Can I walk?
Mateo: Can I walk too?
Fabiana: No. (Walks toward the children, guides Isabella by the arm to
A bracket [ indicates an overlap in the speakers’ talk.
Mateo: No? Mommy, can I walk?
Fabiana: (to Mateo) You stand right there. (Fabiana guides Isabella by
the arm toward the cart) Go.
Isabella: (Stepping backwards) No!
Mateo: Can I walk? (steps forward)
Fabiana: (to Mateo, pointing to a space behind one of the seats in the
cart) Stand right there. (Mateo gets into the cart. Fabiana, still
holding Isabella by the arm, guides her again toward the cart.)
Isabella: (Stepping into the cart, Isabella hits her head on the bar that
serves as the cart handle.) Ow!
Fabiana: Oh, sorry. (Helps Isabella into cart)
Mateo: [Can I det-, can I det-, can we det some popcorn?
Fabiana: No, not right now. (Bent over Isabella, trying to fasten her seat
Mateo: Can I det some Icee?
Fabiana: No, not right now.
Mateo: (Mateo stamps his foot in the cart) Ugh!
Fabiana: (Bent over trying to fasten Isabella’s seat belt) It’s too early.
Mateo Jr: We det Icee to-mah-woh?
Fabiana: (Pulls Isabella forward by the arm to look more closely at the
seat belt) Alright.
Melanie: (Pushing Isabella) Isa! Sit down! (Isabella plops back onto
Fabiana: (Moving away from the cart) This one doesn't work. (AMA:
Oh.) (Fabiana gets a new cart and pushes it toward the
children. The girls are smiling and making unintelligible
babbling sounds to each other.)
Mateo: (Hanging off of the side of the cart) Whoo! (Isabella, holding a
small toy, makes unintelligible exclamations to Melanie.) Bop
bop bop bop!
AMA: That one works? Okay.
Fabiana: Alright. Come here. (Guides Isabella by the arm, points to new
cart. Isabella walks toward the new cart.) Come over here.
(Mateo climbs out of the broken cart and into the new one.)
AMA: You guys have your system here.
Fabiana: Yeah...(Buckles Isabella in) (to Melanie) Okay, sit. (Melanie
climbs up into cart and sits down. Fabiana moves her purse
from the broken cart to the new one, then bends down to
buckle Melanie’s seat belt.)
Isabella: Hey, Mommy. When we...[Mommy Mommy Mommy Mommy
Mommy Mommy Mommy Mommy Mommy,
Melanie: [(Looking at AMA, makes
unintelligible exclamations/toddler babbling)
Melanie: [Yeah, Mommy! (Makes unintelligible exclamations/toddler
Isabella: [(continues to say "Mommy" repeatedly)
Mateo: [(hanging off the side of the cart) I want pizza. Mommy, I want
Fabiana: (Finished fastening Melanie’s seat belt, begins to push cart)
Melanie: Yeah, pizza!
Isabella: Stop, Mateo!
We spent over an hour slowly wandering up and down each aisle in Target.
Sometimes Fabiana stopped to look at products, checking the price or holding out her
favorite shampoo for me to smell. As the previous excerpt suggests, much of the hour was
filled with toddler chatter, laughter, bickering, shrieking, crying, and many, many more
exclamations of “Mommy!”
When we got to the toy aisle, Fabiana pushed the cart slowly as the children reached
toward items on the shelf, pointing to various toys, calling out to Fabiana or each other
about them. Fabiana explained to me how she frequently used this an opportunity for the
children to practice ‘just looking’ at toys, accepting that they would not get to take any
home. Initially, there were many tantrums and tears. Fabiana said:
Before, it was hell. And now that I've been coming-, for the summer I've been
coming, and I give ‘em, I give them a talk. “Okay, no toys.” You know. And I'm
not one to, I've never been one to like, “Oh, we gotta get them a toy so they
can stop crying,” no. I'll just deal with it.
About twenty minutes into the visit, while we were in the toy aisle, Fabiana asked
me if I wanted to observe the children walking rather than being strapped into the cart.
Melanie: Mommy. Wanna get out.
Fabiana: No. (Pauses; looks at AMA) You want me to try it walking?
AMA: It's whatever, [whatever you wanna do.
Melanie: [Mommy, Mommy, Mommy.
Fabiana: Do you wanna see them?
AMA: Sure, unless it's gonna be out of control for you, it's your call
Fabiana: (laughing, pushes cart forward) We'll see, right?
AMA: Sure, it's your call.
Fabiana: You guys wanna walk?
Fabiana: Okay, listen. Look at me. (Mateo and Melanie look at Fabiana.
Isabella is looking at a shelf.) Are you guys gonna listen?
Fabiana: When I say, "Stop," what do you do?
Fabiana: (Looks to AMA and smiles, as if stifling a laugh; bends down
toward Isabella and gently places her hand on Isabella’s chest,
as if to get her attention.) When I say, "stop," you stop. (Raises
her hand in front of Isabella in a ‘stop’ gesture.) Don't move.
Okay? Or you're gonna go back in here (pointing to cart.).
Mateo: Mommy, Mommy, Mommy, Mommy!
Fabiana: Yes? (All three children begin talking at once. Mateo and
Isabella are out of the cart, pointing to and talking about toys
on the shelf. Melanie, still strapped into the cart, looks
distressed as she tries to wriggle free from her seat belt.)
Fabiana: (to AMA, as she bends over Melanie to unbuckle her seat belt)
I've been working on that with them, with her especially
(points to Isabella). Um, because when they're at school, she
(gesturing toward Melanie) always listens to me, so she kind of
gets it already. (AMA: Okay.) But I never had it with these two
(gestures toward Mateo and Isabella) because I just...it was just
My fieldnotes document my overall sense that Fabiana wanted me to witness – and
document – what her life was like, particularly the challenges she faced as the mother of
three young children, two with diagnoses of autism. Later, I had turned my video camera
off as we went through the checkout line where Fabiana purchased a few items. She then
went back to look at some shoes for Melanie. As she looked at a display, the kids again
started bickering and fussing, this time more loudly than before. Fabiana turned to me and
said, “You should get this on your video.”
Introduction and Background
Stories matter. Many stories matter. Stories have been used to dispossess and to
malign, but stories can also be used to empower and to humanize. Stories can
break the dignity of a people, but stories can also repair that broken dignity.
--Chimamanda Ngozi Adichie, The Danger of a Single Story
Latino Children with Autism: Diagnosis and Service Disparities
The previous Target scene, which I will return to later, is an ethnographic glimpse
into family life in the absence of services and supports for the two children with autism,
during a gap in services during the summertime. In the United States, the Latino
population is currently the fastest growing ethnic minority group (Ennis, Rios-Vargas, &
Albert, 2011). Although the prevalence of autism spectrum disorder (ASD, autism from
here on; American Psychiatric Association, 2013) in Latino children in the United States is
increasing at a higher rate than in White children (Centers for Disease Control and
Prevention, 2012), Latino children continue to experience disparities in rates of autism
diagnosis and services in both healthcare and educational settings (Centers for Disease
Control and Prevention, 2014; Liptak et al., 2008; Magaña, Lopez, Aguinaga, & Morton,
2013). Although the reasons for these disparities are not fully understood, there is a
growing consensus that they are due to sociocultural factors rather than a true difference
in the population prevalence (Daniels & Mandell, 2014; Durkin et al., 2010; Pedersen et al.,
2012; Zuckerman et al., 2013).
Large-scale, population-level survey studies have shown that the prevalence of
autism in Latino children (10.8 per 1,000) is significantly lower than in White children
Adichie, C. N. (2009). The danger of a single story. Retrieved February 16, 2016, from
(15.8 per 1,000), who are almost 50% more likely to be diagnosed with autism than Latino
children (Centers for Disease Control and Prevention, 2014). Latino children are on
average identified at a later age than White children (Mandell, Listerud, Levy, & Pinto-
Martin, 2002; Valicenti-McDermott, Hottinger, Seijo, & Shulman, 2012), which can have
implications for the type and frequency of services they receive. In addition, Latino children
who meet the criteria for autism are less likely than White children to be diagnosed
(Centers for Disease Control and Prevention, 2012; Mandell et al., 2009; Shattuck et al.,
2009), and they are more likely than White children to be misdiagnosed (Mandell,
Ittenbach, Levy, & Pinto-Martin, 2007).
Latino children who have a diagnosis of autism also experience disparities in access
to autism services, which includes therapies, treatments, interventions, and supports.
Latino children with autism have decreased access to high-quality healthcare and
developmental services compared to White children (Broder-Fingert, Shui, Pulcini,
Kurowski, & Perrin, 2013; Liptak et al., 2008; Magaña, Parish, Rose, Timberlake, & Swaine,
2012; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). Their parents report that they
have a greater number of unmet service needs and encounter multiple economic and
institutional barriers in attempting to obtain services for their children (Iland, Weiner, &
Murawski, 2012; Magaña et al., 2013; Zuckerman, Sinche, Mejia, et al., 2014).
The Autism Services Landscape in California
While autism is often treated using interventions that are historically bio-medically
oriented, such as physical, occupational, and speech therapies, these interventions typically
take place in educational, rather than medical, settings (Hodgetts, Nicholas, Zwaigenbaum,
& McConnell, 2013; National Research Council, 2001). Until recently, healthcare companies
often attempted to shirk responsibility for expensive autism interventions by claiming that
they were ‘experimental’ or ‘educational’ rather than medical, leaving families to seek
services through state and public education systems (Autism Speaks, 2015).
In California, public funding for autism services primarily comes from two sources.
The Lanterman Developmental Disabilities Act (Lanterman Act from here on), passed in
1969, mandates that individuals with developmental disabilities and their families have the
right to services and supports that they need to facilitate their ability to live more
independently (California Department of Developmental Services, 2016). For children
under the age of 3, the California Department of Developmental Services (DDS)
disseminates state and federal funding
through 21 regional centers, which are nonprofit
agencies that provide case management for individuals with disabilities who live in each
regional center’s catchment area (California Department of Developmental Services, 2016).
For children under age 3, the regional center eligibility criteria are relatively broad (i.e.,
children must have a delay in one or more areas of development; California Department of
Developmental Services, 2015). When children turn 3, they must be reassessed for
eligibility, and the eligibility criteria for individuals ages 3 and older are more narrow (i.e.,
individuals only qualify with a diagnosis of intellectual disability, cerebral palsy, epilepsy,
or autism; California Legislative Counsel Bureau, 2016).
When a child with identified developmental delays turns 3, the public school system
becomes the primary source for services, as mandated by the Individuals with Disabilities
Education Act (IDEA; U.S. Department of Education, 2004a). Children qualify for special
Services for children with developmental delays ages 0 to 2 are legislated under the Individuals with
Disabilities Education Act, Part C (U.S. Department of Education, 2004b).
education based on certain diagnostic categories (e.g., the child exhibits “autistic-like
behaviors;” U.S. Department of Education, 2004a). If a child qualifies for special education
under an autism-related diagnostic category, school districts are only required to provide
services for challenges that affect the child’s ability to access his or her educational
curriculum. This clause can be interpreted in various ways but typically means that issues
that are not seen as directly affecting the child’s school performance are not addressed
(e.g., behavior problems at home, sleep or feeding challenges).
Often, as is shown in Manuscript 2, institutional ‘turf wars’ occur, wherein
institutions such as regional centers and school districts claim that the other is responsible
for funding services (cf. Blum, 2007). This is caused in part by national and global patterns
of defunding public services, brought about by a major economic shift in the global political
economy starting in the 1980s, often called neo-conservatism or neoliberalism (Harvey,
2005; Navarro, 2007). This public funding environment, along with the high cost of
intensive autism treatments that are considered most effective for reducing symptoms and
supporting the development of social, language, and adaptive life skills, mean that even
affluent parents often have to ‘fight’ to secure services from public funding sources, as few
families can afford to pay for these treatments out of pocket (Sousa, 2011; Zarembo, 2011;
see Manuscript 2).
In recent years, the autism services landscape has begun to change, with the passage
of the Affordable Care Act in 2010 (U.S. Department of Health and Human Services, 2015)
and individual state laws mandating private (and in some cases public) medial insurance to
cover certain autism treatments like behavior therapy (Autism Speaks, 2016). In California,
SB 946, passed in 2011, mandated that private health insurance companies cover
behavioral therapy (California Senate, 2011). In 2012, several of the families in this study
who were receiving behavioral therapy through their regional center switched to having it
funded by their health insurance. This switch was prompted by a 2009 ‘trailer bill’ to the
Lanterman Act, which required that regional center clients and their families attempt to get
services covered through their medical insurance (California Department of Developmental
Services, 2009). Notably, the regional center that served as the study site for this study
assisted the families who switched to medical insurance funding with this process, guiding
them with paperwork, assisting them with complex interactions with insurance companies,
and continuing service coverage in the meantime.
Despite these changes, children with autism continue to receive the majority of
services through the public school system (Bilaver, Cushing, & Cutler, 2016). However, like
the healthcare system, there are documented disparities in services and supports provided
by the public education system for Latino children with autism (Harstad, Huntington, Bacic,
& Barbaresi, 2013; Palmer, Walker, Mandell, Bayles, & Miller, 2010). Latino children with
autism are less likely than White children to have an Individualized Education Program
(IEP, Harstad, Huntington, Bacic, & Barbaresi, 2013). The IEP is a document detailing the
student’s special education services, supports, and goals, and every U.S. special education
student has a legal right to have one, according to the Individuals with Disabilities
Education Act (IDEA, U.S. Department of Education, 2004a). In a national study of schools,
Latino children were underrepresented in autism diagnoses in schools in 95% of states in
the United States, a number that far exceeded the disparities in other racial and ethnic
minority groups in the study (Morrier & Hess, 2012). These disparities extend from the
national to the local context: In 2010, Latino children attending Los Angeles Unified School
District (LAUSD) public schools on the eastside of Los Angeles were over 10 times less
likely to have a one-to-one classroom aide compared to White children attending LAUSD
public schools on the westside (Zarembo, 2011)
Potential Causes of Autism Disparities
As previously noted, there is a growing consensus among scientists, researchers,
academics, and clinicians that disparities in autism are caused primarily by social, cultural,
political, and economic factors rather than a ‘true’ difference in prevalence caused by an
unknown ‘protective’ factor (Daniels & Mandell, 2014; Durkin et al., 2010; Pedersen et al.,
2012; Zuckerman et al., 2013). Although the exact causes are not clear, disparities are likely
engendered by a complex interplay of factors at multiple levels (LaVeist, 2002; Smedley,
Stith, & Nelson, 2003).
In population-level studies of disparities, however, disparities in autism diagnosis
and services are often explained by individual- or family-level factors (LaVeist, 2002;
Smedley et al., 2003). For example, in studies which find that autism symptoms are more
severe in children from racial and ethnic minority groups, researchers conclude that this is
because cultural differences in the parents’ recognition of developmental delays resulted in
a failure to be concerned about these delays or to bring them to the attention of a
healthcare provider (Blacher, Cohen, & Azad, 2014; Cuccaro et al., 2007; Tek & Landa,
2012). These explanations identify the problem as rooted in parental cultural beliefs and
child-rearing practices. While the role of cultural beliefs and parenting practices are likely
part of a complex interplay of factors, there is recent evidence that they have only a modest
association with service disparities (Zuckerman, Lindly, Sinche, & Nicolaidis, 2015).
Although a few qualitative studies have been conducted to attempt to understand autism
disparities from the perspectives of Latino parents through the use of interviews and focus
groups (Zuckerman, Sinche, Cobain, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014), the
lack of observation and prolonged engagement in the field limits the ability of these
findings to understand how families engage with professionals and systems of care related
to their children’s autism services, and to understand how their experiences relate to
structural level factors.
Explanations of disparities that focus on parents’ behavior alone can obscure the
role of other factors in causing disparities, such as the role of implicit clinician bias
(Cuccaro et al., 1996; Mandell et al., 2009; Zuckerman et al., 2013). Primary care physicians
report that they encounter frequent barriers to accurately diagnosing autism in Latino
children; find it difficult to assess for autism in Latino children from Spanish-speaking
families; rarely offer autism screenings in Spanish; and view Latino parents as less
knowledgeable about autism (Zuckerman et al., 2013; see also Williams, Atkins, & Soles,
2009). It has been shown that compared to children with intellectual disabilities and
developmental delays, children with autism whose parents had early developmental
concerns related to autism symptoms were less likely to receive proactive responses from
their healthcare providers, who were more likely to give parents reassurance (e.g., to say
that nothing was wrong, that the child would grow out of it, or to take a ‘wait and see’
approach) (Zuckerman, Lindly, & Sinche, 2015). This is exacerbated in the case of Latino
parents who express concerns about their children’s development to their healthcare
providers, as they are more likely than White parents to receive a negative response from
their healthcare provider (Parish, Magaña, & Son, 2016).
Clinicians’ reticence to identify autism in Latino children, however, is partially
influenced by the nature of autism diagnosis, which makes it vulnerable to differing
clinician interpretations of symptoms in Latino children. Diagnostic clinical encounters are
“border zones” (Mattingly, 2008), sites which are vulnerable for misunderstandings and
culturally-mediated interpretations of autistic symptomology, particularly ‘misbehavior’
(cf. Mandell et al., 2007). While all diagnoses are rooted in sociocultural practices, the lack
of a diagnostic brain scan or blood test for autism, and the reliance on interpretation of
behavior, makes it particularly vulnerable to both clinician bias and cultural
misunderstandings and miscommunication.
Clinicians’ actions, like parental cultural factors, are individual-level factors and
should be understood as part of a complex causal picture which also includes structural
factors (Smedley et al., 2003). Structural factors refer to social structures, or routinely and
systematically produced and reproduced patterns of social arrangements between
collectives, institutions, and systems that produce categories of people (Hacking, 1986).
While structures shape (both constrain and enable) human action on the ground (Ortner,
2006), they refer to organized patterns at a macro, or population, level. For Latino children
who have autism, structural barriers to services could stem from a lack of access to
specialists, transportation, clinics in particular geographic areas, service provision in
Spanish language, and high quality healthcare and education (Parish, Magaña, Rose,
Timberlake, & Swaine, 2012; Rodriguez & Hernandez-Santana, 2010; Thomas et al., 2007).
Structural barriers to care also include the previously mentioned institutional ‘turf wars’ in
which institutions and systems of care attempt to evade responsibility for providing autism
services; and from neoliberal economic policies that create conditions of austerity at the
local, state, national, and transnational levels.
The Role of Cultural Stereotypes in the Reproduction of Disparities
In Los Angeles, public awareness of disparities in autism services became
heightened in 2011 with the publication of a series of Los Angeles Times articles on autism,
one of which was titled “Warrior Parents Fare Best in Securing Autism Services” (Zarembo,
2011). The article, which reports startling statistics of how unevenly state funding for
autism services are distributed through both regional centers and school districts, was
widely shared on blogs and social media. Using publicly available data, journalist Alan
Zarembo reported that in 2010, California state spending on children with autism varied
substantially between regional centers, despite the fact that services are supposed to be
distributed based on need alone. For children with autism between the ages of 3 and 6,
spending ranged from as little as $1,991 per child at the regional center in South Central
Los Angeles, which serves predominantly low-income Latino and African American
families; to as much as $18,356 per child at the regional center in Orange County, where a
large number of wealthy White families live. On average, the state spent $7,634 per Latino
child with autism, compared to $11,723 per White child with autism. Even within one
regional center that spans a large geographic area in Los Angeles County, differences were
found to be as large as $4,652 per Latino child and $12,794 per White child living in the
same catchment area. A recent analysis by researchers Leigh and colleagues (2016) uses
publicly available data on California DDS spending on children and adults with autism.
They report that during the 2013-2014 fiscal year, Latino children and adults with autism
made up the largest ethnic group receiving services from the state (38.1%), but per-person
spending on Latinos was among the lowest compared to other racial and ethnic groups
(16.6% lower than spending on White individuals with autism). These recent findings
suggest that the state continues to struggle to reduce disparities in spending on autism
The Los Angeles Times article that initially exposed these disparities includes a
number of quotes from DDS officials who go on record to say that the disparities are due to
Latino and African American parents’ lack of knowledge or inability to “wage a small war”
(Zarembo, 2011, para. 7) with gatekeepers and administrators. An autism specialist from
the Westside Regional Center said, “The more educated and sophisticated you are, the
louder you scream and the more you ask for” (Zarembo, 2011, para. 14). The Westside
Regional Center serves a catchment area that includes the most affluent cities in Los
Angeles County such as Bel Air, Beverly Hills, Pacific Palisades, Malibu, and Westwood
(Westside Regional Center, n.d.). Officials from the DDS, which oversees all 21 regional
centers in California, argued in a written statement that disparities are caused by language
and cultural barriers. The director of community services at the South Central Los Angeles
Regional Center said that Latino and African American families feel stigmatized and do not
‘come to terms with’ their child’s autism diagnosis, which causes them to take minimal
advantage of services offered (Zarembo, 2011, paras. 35-37).
These voices exemplify not only an institutional (DDS and regional centers) but also
media (Los Angeles Times) discourse of ‘parental blame,’ which is critically examined in
each of the three analyses of this dissertation. Stereotypes can be consequential in the lives
of those who are situated at the intersection of marginalized groups based on race, class,
and gender (Hancock, 2004; Hill Collins, 2000). This is clearly illustrated in a scenario in
The Politics of Disgust: The Public Identity of the Welfare Queen by political scientist Ange-
Marie Hancock (2004). In 1996, a member of the House of Representatives read a
statement on the House floor about a woman who was “still waiting for the end of welfare
as she knows it” (2004, p. 1), referring to then-president Bill Clinton’s promise of welfare
reform. The statement depicted a mother of three who had been on and off of welfare for
years, unable to hold a job because her “severely depressed” son’s school frequently called
her to pick him up when he was disruptive and disobedient. Hancock notes the tacit,
“coded” categories in the scenario (a Black single mother with a disruptive male child),
which index the mother as a particular kind of person, i.e. a welfare mother who exploits
the system. This story, which initially appeared in a news magazine, was repeated on the
floor of the House of Representatives, recorded in the Congressional Record, and became
part of the debate about the Personal Responsibility and Work Opportunities Act (HR
3734). This policy attempted to “separate welfare recipients from worthy American
citizens” by drawing upon stereotypes which elicited what Hancock refers to as a “politics
of disgust” (2004, p. 3). Hancock uses this story to highlight the ways that stereotypes
provide instant identities for and narratives about people which act as an “interpretive
filter” (2004, p. 2), coloring all the actions and words of the stereotyped person from that
point forward. In the scenario on the House floor, media representations and public policy
are mutually constitutive, as a ‘welfare queen’ stereotype was drawn upon to promote a
policy which had a deep and lasting impact in the lives of low-income families (Hancock,
2004; see also Hays, 2003).
“The Danger of a Single Story”
The way in which stereotypes operate, according to Nigerian writer and storyteller
Chimamanda Ngozi Adichie, is by providing a “single story” to describe complex situations
(Adichie, 2009). In a TED talk titled The Danger of a Single Story, Adichie said:
I come from a conventional, middle-class Nigerian family. My father was a
professor. My mother was an administrator. And so we had, as was the norm,
live-in domestic help, who would often come from nearby rural villages. So,
the year I turned 8, we got a new house boy. His name was Fide. The only
thing my mother told us about him was that his family was very poor. My
mother sent yams and rice, and our old clothes, to his family. And when I
didn't finish my dinner, my mother would say, "Finish your food! Don't you
know? People like Fide's family have nothing." So I felt enormous pity for
Then one Saturday, we went to his village to visit, and his mother showed us
a beautifully patterned basket made of dyed raffia that his brother had made.
I was startled. It had not occurred to me that anybody in his family could
actually make something. All I had heard about them was how poor they
were, so that it had become impossible for me to see them as anything else
but poor. Their poverty was my single story of them (Adichie, 2009, para. 13-
Adichie (2009) continued on to tell the story of when she arrived in the United States
to attend college. Her American roommate was shocked to find that Adichie spoke English,
knew how to use a stove, and listened to Mariah Carey rather than “tribal” music. Adichie
realized that her roommate had a single story of Africa, one of catastrophe. “In this single
story, there was no possibility of Africans being similar to her in any way, no possibility of
feelings more complex than pity, no possibility of a connection as human equals” (2009,
para. 18). Power, Adichie said, is central to the single story; it is the ability not only to tell
another’s story, “but to make it the definitive story of that person” (2009, para. 29).
Adichie’s (2009) own childhood was made up of multiple stories, stories of a loving,
happy family, and stories of a repressive military government that ruled by inciting fear.
She said that the problem occurs not when the ‘negative’ stories are told, as all of one’s
stories constitute the person one becomes. The problem is when ‘negative’ stories alone
are used to represent and understand a person or group of people. “The single story
creates stereotypes, and the problem with stereotypes is not that they are untrue, but that
they are incomplete. They make one story become the only story” (2009, para. 42).
Latino Parents’ Multiple Cultural Stories
Perhaps paradoxically, the notion that multiple stories are closer to the truth than a
single story resonates with the way that the parents in this study themselves described
their culture. Although culture itself was not an explicit focus of this study, it seemed to
inevitably emerge in the Latino parents’ stories about their children’s autism services.
During interviews in which I asked the parents about their experiences obtaining autism
services, many offered their own understandings of “Latino culture” in the context of
autism, perhaps in part because they knew that the study recruited bilingual Latino
families. Parents’ explanations about “Latino culture” were varied and even conflicting.
Some used words like “ignorance,” “lack of education,” and “old-school,” or described
observing other Latino parents, often recent immigrants and monolingual Spanish-
speakers, accept the services they were offered for their children with autism rather than
‘fighting’ (see Manuscript 2 for one potential explanation for not ‘fighting’). At the same
time, the parents in the study also attributed their own determination, in the face of
barriers to obtaining services for their children, to the cultural values that their parents
instilled in them, using words like “stability,” “structure,” “pride,” “resilience,” and “support
system.” The overall depiction of “Latino culture” in the context of autism, based on the
parents’ own experiences and their observations of other Latino parents of children with
autism, was made up of many stories. I heard stories of parents being excluded from critical
information about autism services; stories of parents’ relentless commitment to their
children’s education; stories of the challenges Spanish-speaking Latino parents faced when
participating in IEP meetings conducted in English; and stories of the resiliency both
required by and borne of the immigrant experience.
In the course of my dissertation research, I came to understand these not as conflicting
stories, but as multiple stories. Multiple stories bring nuance to the discourse of Latino
parents as uninformed about their children’s autism services (Zarembo, 2011; Zuckerman,
Sinche, Cobian, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014). Latino parents, both in
this study and others, have identified a general need in the Latino community for accurate,
timely information about autism (Blanche, Diaz, Barretto, & Cermak, 2015; Zuckerman,
Sinche, Cobian, et al., 2014; Zuckerman, Sinche, Mejia, et al., 2014). A lack of access to
information is a form of exclusion and injustice, and as is evident in Manuscript 2, even
informed, ‘activated’ (Lareau, 2011), ‘autism parents’ (de Wolfe, 2014; Silverman, 2013;
Zarembo, 2011) described the ways in which systems of care kept important information
about services ‘hidden’ from them. The story of being excluded from information is,
however, only one story of autism in the Latino community. There are many other stories
about Latino families raising children with autism, and this dissertation aims to engage
with and understand some of them.
Bilingual, Bicultural Families
As described in the previous section, during interviews about their experiences with
autism services, the Latino parents in this study offered insights about “Latino culture.”
Their stories reflected the ways in which they, as bilingual Latinos living in Los Angeles
County, straddled two cultural and linguistic worlds (Soto, 2007). Recruiting bilingual
parents and caregivers was a methodological decision that was made based on their unique
position to provide insight about the intersection of culture and families’ experiences of
autism (cf. Daley, 2004; Grinker & Cho, 2013; Brinda Jegatheesan, Fowler, & Miller, 2010).
Culture is a complex term that has been defined in many ways. I draw from the work
of anthropologist Sherry Ortner (2006), who defined culture as “the (politically inflected)
schemas through which people see and act upon the world and the (politically inflected)
subjectivities through which people feel – emotionally, viscerally, sometimes violently –
about themselves and the world” (Ortner, 2006, p. 18). This definition is particularly fitting
for the critical approach of this study (which will be discussed at length below), because,
according to Ortner (2006), “social transformation must also be cultural transformation or
it will be nothing” (2006, p. 18).
Unlike a linguistic approach to studying bilingual families of children with autism
(e.g., how and when individuals “code switch” or how bilingualism impacts speech
development; Baker, 2012; Kremer-Sadlik, 2005), I asked parents about their experiences
with autism services, without directly asking them about culture or language, and let them
guide the conversation. What emerged was a complex, multi-layered view of the multiple
ways that the parents enacted, resisted, and re-created their cultural identities in their
quest to equip their children with the knowledge, skills, and resources to lead a
“successful,” happy life. This is exemplified in a conversation between Sofia and Daniel, the
parents of Danny, during an interview. In this interview, Sofia described how she had
looked on the Internet for “success” stories of individuals with autism who went to college
and lived independently, in order to find out what their parents did to facilitate that
success. She explained that she only saw stories of White families “succeeding,” which led
to a conversation about “Latino culture:”
Sofia: But I think that as-, to our credit, too, is that I think we've taken the best
of our immigrant [culture.
Daniel: [Oh, no I have some of the bad (laughing).
Sofia: And the best of our American culture. And we've combined the two and
we made this-, our own culture, [right?
Daniel: [But I think that [goes for all-
Sofia: [So we try to take away
the-, we try to, like, get rid of the bad stuff of our culture, [you know?
Daniel: [But that goes
[for all of us though.
Sofia: [And all the, American [culture, right?
Daniel: [That goes for-, if you've talked to any Latino
person, or culture, who grew up the way we did, and has moved a step
above from where he came from? That goes for them too. That goes-,
[that's not a me and you thing,
Sofia: [That's everybody. Yeah.
Daniel: That's [our-
Sofia: [No! But I'm saying in regards to Danny.
Daniel: Oh, I see.
Sofia: In regards to, like, having him persevere. Like, I see all these Caucasian
families doing it-
Daniel: Isn’t that funny-
Sofia: Well, [guess what I wanna do?
Daniel: [What I saw today-, what I heard today [on the radio?
Sofia: [I want to be just like you.
What are you doing? I want to know. Because I want to do that with my
Daniel: Isn't that funny what I heard on the radio today, though? About-, they
were discussing what theme they had in their bedroom? And we didn't
have bedrooms. We didn't have bedrooms! People had bedrooms? Like
that's (laughing)-, that's how you can tell we were raised different, you
Sofia: Well, that's what I'm saying. We've learned how to adapt and we've
learned to-, I know that in my college years I learned-, we don't use the
word "assimilate," we use "acculturate." (AMA: Acculturate?) Right. And
we've learned to acculturate and we've learned that, "Okay, I'm very
proud of being Latina. I'm very proud of being Chicana. But, I want to
follow these models.”
Sofia and Daniel’s conversation represents the complex, varied, and changing
meanings that families assigned to culture in relation to their experiences attempting
to obtain services to equip their children with autism to live “successful” lives. With
this background of parents’ experiences of their children’s autism services, I will now
describe the study methods.
This dissertation research utilizes ethnographic methodology to understand the
experiences of bilingual Latino parents of children with autism living in Los Angeles
County. The dissertation follows a ‘three paper’ format,
rather than a traditional
dissertation ‘book’ format, with three distinct analyses of the data corpus. With this
format, each paper is written as a standalone, publication-ready manuscript and
therefore has its own abstract, background and literature review, methods, findings,
discussion, and conclusion sections. For clarity, in this dissertation document, there is a
single reference section at the end, and the numbering for tables, charts, footnotes, and
endnotes are sequential for the entire document. Because of the length limitations of
the peer-reviewed journals that the manuscripts will be submitted to, this Introduction
and Background section gives greater detail about the study methods, theoretical
framing, and analysis than are found in any of the three manuscripts.
Manuscript 1, “‘Doing Family’: Disparities, Opportunities, and Capabilities in Latino Families’ Experiences of
their Children’s Autism Services,” has been submitted to a journal with coauthors Gelya Frank, PhD, and Olga
Solomon, PhD and is currently under peer-review.
This research builds from ethnographic, narrative, and phenomenological
traditions in occupational science (Angell & Solomon, 2014; Lawlor & Mattingly, 1998,
2009, 2014; Lawlor, 2003; Mattingly, 2008, 2010, 2014; Solomon, Heritage, Yin,
Maynard, & Bauman, 2016; Solomon, Angell, Yin, & Lawlor, 2015; Solomon & Lawlor,
2013). It is modeled after a 3-year study with African American families of children
with autism titled Autism in Urban Context: Linking Heterogeneity with Health and
Service Disparities (National Institutes of Health/National Institute for Mental Health,
R01 MH089474, 2009–2012, O. Solomon, P.I.).
As there is little ethnographic research
on the experiences and perspectives of Latino families of children with autism,
particularly on parents’ experiences of services disparities, this study addresses a gap
in the literature.
Ethnographic methodology is commonly used to examine the taken-for-granted
aspects of social life (Creswell, 2013; Patton, 2014). Critical ethnography aims to
uncover operations of power behind supposedly neutral assumptions, situating its
study within a broader political economy (Conquergood, 1991). Critical ethnography
has both political and pedagogical interests, seeking social change through the
production of “really useful knowledge” (Jordan & Yeomans, 1995). Critical
ethnography is conceptualized as “an interrelated set of concepts and research
practices constructed for the purpose of producing a particular articulation of
The Autism in Urban Context Project in Dr. Olga Solomon’s lab served as my PhD ‘immersion’ experience
throughout my years as a graduate student. Through my participation in the Autism in Urban Context Project, I
received training, mentorship, and experience in all aspects of ethnographic research (e.g., data collection,
management, analysis, and presentation of findings).
knowledge” from “a standpoint which implicates us in moral questions about desirable
forms of social relations and ways of living” (Simon & Dippo, 1986, p. 196).
This research also builds upon a number of recent critical approaches and
methodologies in occupational science (Angell, 2014; Farias & Laliberte Rudman, 2016;
Frank & Muriithi, 2015; Frank, 2012, 2013; Huot, Laliberte Rudman, Dodson, &
Magalhães, 2012; Huot & Laliberte Rudman, 2015; Laliberte Rudman, 2013, 2014;
Whiteford & Hocking, 2012). In the 2010 Ruth Zemke Lecture in Occupational Science,
Frank (2012) pointed to occupational therapy’s historic foundations in moral
philosophy, in the American pragmatist tradition of John Dewey (see also Frank &
Zemke, 2009). Frank (2012) argued that engagement with these roots can open up
spaces to address the kind of moral and ethical concerns which occupational science
and occupational therapy share, concerns about human wellbeing and flourishing.
Recent critical approaches in occupational science build upon this foundation of
moral philosophy, raising ethical and political questions about what constitutes ‘the
good life.’ Several occupational scientists and occupational therapy researchers have
turned to the capabilities approach of economist Amartya Sen (1999) and philosopher
Martha Nussabaum (2002) to address these concerns (Bailliard, 2016; Frank, 2013;
Mousavi, Dharamsi, Forwell, & Dean, 2015; Mousavi, Forwell, Dharamsi, & Dean, 2015;
Townsend, 2012). The capabilities approach looks beyond singular measures of
freedom such as income or political freedom, evaluating freedom in terms of the things
people are able to do to be part of their communities, which constitutes human
flourishing (Sen, 1999). Because of the congruence between the capabilities approach
and an occupational perspective (Bailliard, 2016; Frank, 2013; Townsend, 2012), the
capabilities approach is further discussed in Manuscript 1.
The overarching goal of this study was to understand Latino parents’
experiences of their children’s autism diagnosis and services. Based upon prior
research on disparities and delays in autism diagnosis for Latino children (Centers for
Disease Control and Prevention, 2014; Mandell et al., 2009; Shattuck et al., 2009;
Valicenti-McDermott et al., 2012), I anticipated this issue to emerge to some degree in
the data. As data collection began, however, it became clear that the parents’
experiences of services were much more salient in their narratives than their
experiences of obtaining an autism diagnosis for their children. For the most part,
children were diagnosed with autism at a relatively young age,
and families obtained
the diagnoses with relative ease. This appears to be due in large part to the particular
regional center that served as the study recruitment site. The parents reported that the
regional center was responsive, supportive, and generally facilitated the diagnostic
process such that parents did not have to ‘fight’ to obtain a diagnosis. The parents’
stories of acquiring their children’s autism services, however, included significant
difficulties in obtaining services from their school districts (see Manuscript 2) and
challenges related to how services fit into families’ everyday routines and occupations
(see Manuscript 1).
The age at diagnosis for the 13 children in the study ranged from 2 years, 3 months to 4 years, 1 month, with
a mean age of 2 years, 9 months.
Two overarching questions guided the study, with three specific questions
about parents’ experiences of their children’s of autism services. In qualitative
research, “sometimes the research questions change in the middle of the study to
reflect better the types of questions needed to understand the research problem”
(Creswell, 2013, p. 22). The questions shifted from an initial focus on autism diagnosis
and services, to a sole focus on services. Additionally, the final question below emerged
from the data as it became evident that parents’ ‘bus stories’ were salient to their
experiences (see Manuscript 3).
How do bilingual Latino parents living in Los Angeles County experience their
children’s autism services? How can these experiences be understood in
relation to national/transnational issues of political economy?
o What are Latino families’ opportunities and capabilities (Sen, 1999) in
relation to obtaining autism services for their children?
o What challenges and opportunities do Latino parents face as they engage
with systems of care to obtain autism services for their children?
o What are Latino parents’ experiences related to their children with
autism taking public school transportation?
The study was carried out in two phases (see Table 1.1). Phase 1 (3 months)
consisted of two audio-recorded narrative interviews with 12 families (19 parents, one
) of 13 children
with autism to retrospectively identify how they came to
obtain an autism diagnosis and services for their children (see Appendix A for Phase 1
interview guides). After the first interview, I created a color- and pattern-coded visual
timeline of each family’s story (described in more detail below; see Appendix B for
sample timelines). During the second interview, the timelines were used as a means of
member checking, a qualitative strategy that allows participants to verify, modify, or
correct researchers’ interpretations (Patton, 2014).
After Phase 1, six of the 12 families were recruited using heterogeneity
sampling (i.e., whose stories represented a range of experiences; Patton, 2014) to
continue to Phase 2. Phase 2 (9 months) consisted of audio-recorded narrative
interviews; video-recorded (when possible) observations in home, community, clinic,
and school settings; and record review of the children’s health records (i.e., medical or
educational documents related to the child’s diagnosis or services; Angell & Solomon,
Table 1.1: Study Design
Phase 1 Phase 2
Timeline 3 months 9 months
Participants 12 families
6 families (from original
Ethnographic observations in
home, clinic, school, and
Health record review
In Phase 1, I recruited 12 families and invited all parents or caregivers to attend the interviews. Of the 19
who participated, one was a grandmother, whom the family considered to be one of the child’s primary
One family had two children diagnosed with autism.
Theoretical Framework: A ‘Critical Occupational Science’ Approach
Occupational scientists Farias and Laliberte Rudman (2016) recently identified
what could be considered a ‘critical moment’ in occupational science, in which critical
approaches are increasingly taken up as part of an “emancipatory agenda” (Whiteford
& Hocking, 2012, p. 3). Farias and Laliberte Rudman (2016) referred to this “a crucial
moment of disciplinary development, characterized by critical reflexivity regarding its
foundational assumptions and calls for a more critical and socially responsive
discipline” (2014, p. 33). Through a critical interpretive synthesis of occupational
science articles that use a critical perspective, Farias and Laliberte Rudman (2016)
found that what could be considered an emerging ‘critical occupational science’ is
made up of a diverse and evolving group of theoretical approaches and methodologies
that aim to “expose, illuminate and/or transform dilemmas and tensions related to
social divisions and power differentials, which in turn are central concerns of social
justice” (2014, p. 35-36).
Critical social science. Critical social science refers broadly to scholarship by
social theorists that utilizes critical theory, or an approach which “is committed to
unveiling the political stakes that anchor cultural practices” (Conquergood, 1991, p.
179). Critical theory politicizes both everyday knowledge and practices, as well as
science and scholarly knowledge. By examining the taken-for-granted aspects of the
social world, critical theory points to the ways that cultural categories, ways of
thinking, ideologies, and social practices are shaped and constituted by cultural
conceptions that are part of the collective habitus (Goodale, 2006; Sayer, 2009;
Unlike traditional theory, which is primarily descriptive and requires a separate
step to apply its knowledge, critical theorizing simultaneously integrates theory and
practice by joining explanatory social science (which explains the causes of social
action) with practical philosophy (which asks ethical and political questions about
what constitutes the good life) (Schwandt, 2015). In deconstructing and radicalizing
normative categories, revealing the ways that belief systems and social relations are
internally inconsistent or incoherent, critical theory examines them against their own
standards with the aim that individuals or groups, aware of their own internal
contradictions, will change their beliefs and practices.
Critical theory emerged from several late- and post-Marxist schools of thought.
The Frankfurt School in Germany, led by Theodor Adorno, Jurgen Habermas, and Max
Horkheimer, was influential in the 1950s (Tar, 1977). In Britain in the 1980s, the
Centre for Contemporary Cultural Studies (CCCS) was established at the University of
Birmingham (Lave, Duguid, & Fernandez, 1992). Led by thinkers such as Stuart Hall
and Raymond Williams, the Birmingham School took class as a central analytic point in
order to explore the way culture produces class (rather than the way class produces
culture). The Birmingham School consisted of overlapping groups such as work studies
and women’s studies, raising “coherent groups of questions first about historical and
cultural local collectivities that mediate between social forms and forces, and second
about the processes through which persons are historically constituted” (Lave et al.,
1992, p. 265).
Critical social science can refer to a number of perspectives, theories, and
methodologies (Agger, 2006; Sayer, 2009). “What makes empirical social research
‘critical,’ in the absence of clear theoretical identification and affiliation, is the
unmasking of aspects of domination, both material and cultural, that are regarded as
grounded in history, not social nature” (Agger, 2006; p. 169).
Critical occupational science. The use of critical theoretical approaches and
methodologies in occupational science are best understood in relation to increasing
disciplinary interest in occupational justice, defined as “an evolving concept that
describes a vision of society in which all populations have the opportunities, resources,
privilege, and rights to participate to their potential in their desired occupations”
(Whiteford & Townsend, 2011, p. 65). Critical approaches in occupational science are
based on the argument that occupational ‘choices,’ opportunities, and participation can
only be understood in relation to socio-political and discursive influences that shape
the complex relationships, or transactions, between individuals and their
environments (Farias & Laliberte Rudman, 2016; see also Angell, 2012; Cutchin &
Dickie, 2013; Dickie, Cutchin, & Humphry, 2006; Frank, 2012, 2013; Laliberte Rudman,
2006, 2013, 2014; Whiteford & Hocking, 2012).
The acknowledgement that everyday occupational experiences and
opportunities can only be understood in relation to the sociocultural, political
economic context makes a critical occupational science framework important for an
examination of autism service disparities. A critical occupational science approach has
the ability to examine how social policies related to autism services reflect the relative
positions among policy makers, providers, and ‘consumers’ regarding the authority
and power each have over resources (e.g., funding, eligibility, types of services, service
delivery methods). These positionalities could influence how opportunities, such as
state or federal funded autism-related services or supports, are described, intended,
understood, distributed, delivered, and experienced ‘on the ground.’
Political economy. Occupational scientist Laliberte Rudman (2012) utilized a
critical approach informed by political economy, which takes into account the large
scale systems in which local societies, communities, or neighborhoods are embedded
(see also Ortner, 1984, 2005). A political economic analysis comes from the standpoint
that events that take place in a local context need to be examined with a reference to
national and transnational systems and processes (e.g., Frank & Zemke, 2009; Frank,
2012). Through the examination of larger regional processes, political economy
investigates the penetration of state and world capitalism on local communities and
explores the ways that exploitation caused by capitalism leads to ongoing
destabilization and change in society.
Political economy is useful for understanding the influence of the global political
economy on the everyday lives of Latino families of children with autism. The current
political and economic climate is marked by neoliberalism, a major economic shift
since the 1980s in the global political economy (Harvey, 2005; Navarro, 2007).
Neoliberalism refers to the conservative economic agenda originating in the policies of
Ronald Reagan and Margaret Thatcher. It is characterized by three key traits:
privatization, regulation, and the defunding of social services.
Neoliberalism was inspired by an economic ideology that originated in the
Chicago School of economics, for which Milton Friedman is most famous (see
Friedman, 2002). The Freidman school of thinking was premised on a kind of economic
purism and scientific neutrality, claiming that if all constraints or limitations on the
market were ‘freed,’ the forces of supply, demand, and inflation would be balanced and
solve problems like unemployment and poverty (Navarro, 2007). By the 1980s, public
criticism of the welfare state was organized into a political attack on the ‘dependency’
created by the European and U.S. welfare states (Coburn, 2006; Navarro, 2007; Rose,
1996; see also Manuscript 3).
Today, government services are increasingly defunded and privatized, creating
a depleted public services environment that requires parent to ‘fight’ even for services
that their children are, in theory, legally entitled to (see Manuscript 2). Even as private
sector “experts” have been identified as the “marketized” solution to the ‘problem’ of
autism through fee-for-service interventions (Apple, 2004), responsibility has
simultaneously shifted from the government to families for their children’s autism
services, as individualism is elevated above a collective enterprise (Douglas, 2010;
Dunst, 2012; Navarro, 2007; Rose, 1996; see Manuscripts 2 and 3).
Narrative phenomenology. Drawing from anthropologist and occupational
scientist Mattingly’s (2010) work, this critical occupational science approach views the
sociocultural, political economic context that shapes parents’ experiences of their
children’s autism services in a way that aims to capture ‘life on the ground.’ Mattingly’s
narrative phenomenology is a practice theory that ‘writes against structure’ as
deterministic, or against the inevitable reproduction of social inequality. Mattingly
argues that humans live their lives not as if their future was already determined but
rather along the contours of narrative, with its dramas, conflicts, suspense, and
Phenomenology can refer to a diverse group of philosophies, methods, and
orientations, but the common focus is on how humans make sense of experience and
transform it into consciousness (Patton, 2014). Mattingly’s (2010) narrative
phenomenology draws from hermeneutic phenomenology, influenced by philosophers
Martin Heidegger, Hans-Georg Gadamer, and Paul Ricoeur. Hermeneutics refers to the
interpretation of texts, which include stories, legends, or myths (Patton, 2014).
Heidegger claimed that every social encounter is already influenced by an individual’s
interpretations, which are shaped by her history (Laverty, 2008). Hermeneutic
phenomenology, then, is “interpretive and concentrated on historical meanings of
experience and their developmental and cumulative effects on individual and social
levels” (2008, p. 27).
The problem of interpretation has been linked to narrative, because the way
that humans work to interpret the actions of others is by positioning them in an
unfolding story. Mattingly (2008) argues, from her reading of Paul Ricoeur and
Alisdaire MacIntyre, that in order to interpret what someone else is doing, we must
locate it in a context that we can make sense of, an episode that is part of a broader
story. Stories are conduits for interpretation, the means by which ongoing interpretive
processes take place. In other words, humans constantly reinterpret the past in light of
the present, with an eye to hoped-for futures, giving this interpretation a narrative
shape (Mattingly, 1998, 2008).
The “narrative turn” in social science in the 1980s drew from Kenneth Burke’s
“dramatism” and Victor Turner’s “social drama” (Mattingly, 2010), foregrounding
narrative as a fundamental way that humans make sense of social life (Bruner, 1990;
Mattingly, 2008; Reissman, 1993). This sense-making takes place in unfolding dramas
that are politically charged, often conflict-driven, suspenseful, and unfinished.
Narrative is suited to this phenomenological approach because of its ability to capture
the way that everyday life is idiosyncratic, contingent, and emergent.
Narrative phenomenology is conceptualized not only a ‘dramatized’ theory of
practice but also an ethnographic method that aims to move between the micro and
macro with a three-fold focus: Person-centered, event-centered, and discursive-
centered ethnography (Mattingly, 2010). While this dissertation builds from narrative
phenomenology, the event-centered component is not as prominent in this research
simply because there were fewer opportunities in this short dissertation study for
video-recording interactions between parents and professionals and practitioners. For
some interactions, like at IEPs and one pediatrician visit, I was able to take notes but
not video record (fine-grained “microethnograhpic” analysis made possible from
video-recorded observations is central to the event-centered aspect of narrative
phenomenology). Related to this, I was unable to conduct interviews with many
practitioners, which would provide the “multiple perspectives” on parents’ interactions
with professionals that is an important characteristic of narrative phenomenology.
These differences I primarily attribute to the relatively short length of time of a
dissertation ethnographic study, where it is more difficult in a short period of time to
build relationships with practitioners and gain their trust.
Despite these differences, this study draws heavily upon the person-centered
and discursive-centered aspects of narrative phenomenology (Mattingly, 2010). The
person-centered vantage point of narrative phenomenology foregrounds the way that
human experience is unpredictable, indeterminate, and not-yet-finished, placing
experience as the central focal point. This approach is consistent with disciplinary
debates in occupational science about how occupation is best conceptualized and
studied. Since the founding of occupational science in 1989, occupation has been
defined in various ways, from “chunks of activity…which are named in the lexicon of
the culture” (Yerxa, 1990, p. 5; see also Zemke & Clark, 1996, p. vii) to “the ordinary
and familiar things people do every day” (Clark et al., 1991, p. 300). In the past decade,
there has been critique from within the discipline about the tendency to conceptualize
occupation from an individualistic perspective (Angell, 2014; Dickie, Cutchin, &
Humphry, 2006; Hammell, 2009; Iwama, 2003; Laliberte Rudman, 2013). I address
these concerns by taking a sociocultural perspective on the study of occupation, as in
Lawlor’s (2003) definition of childhood occupation as “doing something with someone
else that matters” (2003, p. 424). By conceptualizing occupation not as individualistic
but as inherently intersubjective, my unit of analysis becomes the family experience
of occupation, rather than occupation itself.
Critical examination of discursive practices. Before addressing Mattingly’s
(2010) discursive-centered aspect of narrative phenomenology, I briefly return to
recent critical approaches in occupational science scholarship. In addition to the use of
political economy (Laliberte Rudman, 2012), these critical approaches capture
sociocultural, political economic contextual influences on occupation through attention
to discursive practices, such as how power and neoliberal rationality create
My focus was specifically parents’ experiences of autism services, but the data analyzed for Manuscript 1
necessitated a focus on the occupational experiences of the entire family (as narrated by the parents). For
Manuscripts 2 and 3, the analytic focus is on parents’ experiences specifically.
opportunities or limitations for occupational engagement (Farias & Laliberte Rudman,
2016; Huot et al., 2012; Laliberte Rudman, 2006, 2012). Discourse in this sense refers
to language, both speech and text, which constructs the social world. Like Mattingly’s
(2010) discursive-centered ethnography, I begin not with a priori categories like race,
ethnicity, or class, but from the perspective of lived experience and social interaction.
“The discursive, in other words, becomes visible as something intricately acted”
(Mattingly, 2010, p. 33). As much as possible, I followed families through a number of
institutional, clinical, and community spaces, attempting to understand how “structural
conditions have impinged upon their lives” (Mattingly, 2010, p. 34).
This analysis attempts to expand Mattingly’s (2010) discursive-centered
narrative phenomenology, building from recent critical ethnographies in occupational
science (Asaba & Jackson, 2011; Bailliard, 2013; Huot et al., 2012), to explicitly
examine the influence of discourse on occupational experience. In viewing parents’
occupational experiences related to their children’s autism services, I aim to
understand the sociocultural, political economic contextual influences on occupation
(Farias & Laliberte Rudman, 2016; Huot et al., 2012; Laliberte Rudman, 2006, 2012).
To explore how power and neoliberal rationality create or limit opportunities for
occupational engagement, I draw on the post-structuralist view of power not as
something that is possessed, but as “far more diffuse and mobile; it is continually
circulating and allows more possibility for the role of individual agency (Smith, 2015,
p. 357; see also Calhoun, 1995).
In each manuscript of this dissertation, discourses related to Latino parents of
children with autism are critically examined in relation to power and political
economy. In Manuscripts 1 and 2, the discourse of ‘cultural deficit’ or parental blame,
found in institutional (including academia) and media explanations for disparities in
autism services for Latino children, is critically examined. In Manuscript 3, a discourse
of ‘independence’ used by school district professionals is critically examined. This
critical analysis is situated within the current ‘critical moment’ in occupational science
(Farias & Laliberte Rudman, 2016; Whiteford & Hocking, 2012) and aims to explore
how power and neoliberal rationality create opportunities or limitations for
occupational engagement for Latino parents of children with autism.
Ethical Approval and Consent
Ethical approval for the study was obtained from the University of Southern
California (USC) Health Sciences Institutional Review Board (protocol #HS-13-00589)
and the regional center that served as the study site. The regional center was chosen
because it serves a large number of Latino families (53.8%).
All participants reviewed and signed IRB-approved informed consent forms.
Parents who participated in Phase 2 also signed IRB-approved Health Insurance
Portability and Accountability Act (HIPAA) forms because they shared their children’s
health records. No children with autism were able to give written consent, so parents
gave assent on their behalf.
Recruitment was carried out using a strategy that proved successful on the
Autism in Urban Context Project (Angell & Solomon, 2014; Solomon et al., 2015, 2016;
Solomon & Lawlor, 2013). Letters written in English describing the study were mailed
to a random computer-generated list of eligible children’s addresses that was created
by the regional center staff members, who addressed and mailed the letters so that
families’ names were kept confidential. Parents or caregivers who were interested in
participating contacted me by phone or email. During a phone conversation, or via
email, I explained the study, and the parents asked any questions that they had. If they
and their children with autism met the study inclusion criteria and were interested in
participating, I met with them in person at a location of their choice to review the study
consent forms. All families that I met with in person decided to proceed with
participating in the study. Families were given a stipend of $75 at the time of initial
consent for their participation in Phase 1. Families in Phase 2 were given a stipend of
$75 every three months, for a total of three stipends.
To qualify for the study, children had to be 8 years of age or younger at the time
of enrollment and have a documented autism diagnosis by a licensed professional. At
least one parent or caregiver had to be bilingual (English/Spanish) and self-identify as
Latino or Hispanic. Initially, recruitment criteria also specified that children must have
been diagnosed in the previous six months in order to understand the experiences of
families whose children had been recently diagnosed. Of 80 recruitment letters sent to
families whose children had been diagnosed in the past six months, only three eligible
This may indicate that families are not ready to participate in a
research study so soon after their child has been diagnosed with autism. I then
broadened the recruitment criteria to include families whose children who had ever
been diagnosed with autism. Within several days after the regional center sent 200
Because the regional center was not able to identify from their database which families were bilingual (i.e.,
they were only able to identify whether English or Spanish was the preferred language), some families who
contacted me at this stage were not bilingual and therefore did not meet the recruitment criteria.
additional letters to families who met this broader eligibility criteria, I received a
number of calls and emails from interested parents, far exceeding the aim of 12 total
After Phase 1, heterogeneity sampling was used to determine which families of
the cohort of 12 would be invited to participate in Phase 2. To determine which
families would be invited, I made a chart to document families’ experiences related to
obtaining an autism diagnosis and services, based on data from Phase 1. Categories
were created based on: 1) The diagnostic process (e.g., children’s age at diagnosis,
when families identified the first signs of autism and which signs were identified,
whether children showed developmental regression, and whether the actions of
pediatricians facilitated or delayed the next step toward the identification of autism);
2) The services children received (e.g., whether children received early intervention,
behavior therapy, occupational therapy, or speech therapy, and whether families used
alternative medicine treatments); and 3) Other types of information that emerged in
families’ stories in Phase 1 (e.g., whether parents had conflicts with practitioners,
whether parents had challenges with their extended family members, whether parents
were satisfied with their child’s school services and what (if anything) they did about
their dissatisfaction, whether parents had ‘fought’ school districts for services, and
whether things had gone smoothly in obtaining services). After reviewing the chart and
timelines with my dissertation chair, Dr. Olga Solomon, we selected six families whose
experiences represented a range of experiences per the chosen categories. All six
families who were invited chose to participate in Phase 2.
Data Management and Confidentiality
After each data gathering encounter, a fieldnote was audio-recorded and an
Encounter Form (see Appendix C) was completed. Pseudonyms were used for all
potentially identifiable information. Data were uploaded to and stored on a secure
server at the USC Chan Division of Occupational Science and Occupational Therapy.
The data were only viewed by me, my dissertation committee members, and three
occupational therapy graduate student transcribers who completed standard IRB
Human Subjects Protections and HIPAA trainings and certifications. I maintained close
supervision of data transcription via quality control procedures that included checking
the transcripts for accuracy and providing on-going feedback to the transcribers.
Participants (36 total) included 13 children with autism from 12 families (one
family had two children with autism diagnoses); 12 mothers; eight fathers, step-
fathers, and father figures; one grandmother; and two professionals (an Applied
Behavior Analysis (ABA) therapist and an ABA supervisor) (see Table 1.2). Although I
welcomed parents to invite extended family members to participate in the study, and
families’ stories indicated that their kin played an important role in their lives, no other
family members participated except the previously-mentioned grandmother, who was
considered by the family to be one of the child’s primary caregivers. This guided the
analytic focus on parents’ (rather than families’) experiences (see also the Reflexivity
Table 1.2: Participants
Children with autism 13
Total Participants 36
At the time of recruitment, the children with autism ranged in age from 3 years,
4 months to 8 years, 2 months (mean age 5 years, 1 month). Of the 13 focal children
with autism, 10 were boys and 3 were girls (see Figure 1.1).
Figure 1.1: Focal Children
Consistent with ethnographic methodology, which requires building trust
between the researcher and participants, the socioeconomic status of families was not
elicited. Most families in the study lived in cities with median annual household
incomes ranging from $30,000 to $60,000, with average household sizes slightly larger
than the Los Angeles County average.
Attrition was relatively low. One mother who was enrolled in the study
participated in an interview, during which it became clear that she had little knowledge
of her son’s diagnosis and services because she had not been his primary caregiver or
lived with him during most of his life. Therefore, it was determined that she did not
meet the study criteria because she was unable to answer questions about her son’s
diagnosis and services. The mother was given a stipend for participating but did not
continue with further interviews. Additionally, one behavior therapist participated in a
video-recorded observation session, then decided not to participate in the study due to
anxiety she experienced after being observed. All data collected from these
participants were excluded from analysis.
Data Collection and Data Corpus
I collected the data between May 6, 2014 and May 16, 2015. The data corpus
consists of 40 interviews, 10 observations, 60 fieldnotes,
and 333 health records, for a
total of 433 data points (see Table 1.3). These data make up almost 80 hours of audio-
and video-recorded data (see Table 1.4). The observations in Phase 2 took place in
community (4), school (3), clinic (2), and home (1) settings (see Figure 1.2).
Table 1.3: Data Count (Data Points)
Data Type Phase 1 Phase 2 Total
Interviews 24 16 40
Observations --- 10 10
Fieldnotes 38 22 60
Records --- 333 333
Total 62 381 443
The fieldnote count includes fieldnotes dictated after every encounter with participants, as well as
fieldnotes about the study site and recruitment process.
Table 1.4: Data Count (Time)
Data Type Phase 1 Phase 2 Total
Interviews (audio) 34:36:44 15:02:29 49:39:13
Observations (video) --- 03:30:23 03:30:23
Interviews (unrecorded) --- 01:16:26 01:16:26
Observations (unrecorded) --- 04:16:58 04:16:58
Fieldnotes (audio) 14:49:15 06:26:19 21:15:34
Total 49:25:59 30:32:25 79:58:34
Figure 1.2: Observation Sites
The 333 health records include medical records, IEPs and other school special
education documents, regional center documentation, evaluations, assessments,
treatment notes, and progress reports (Angell & Solomon, 2014). There was wide
variation in the number of records that families shared (see Table 1.5). Some children
in the study were diagnosed shortly before the study began and had received almost no
services by the end of the study; therefore, they had very few documents. Other
children had been receiving services for years, and because their parents had
meticulous record keeping practices, they had many documents.
Home Community School Clinic
Table 1.5: Records per Child
Mateo Jr. 10
Rafael Jr. 24
Qualitative data analysis is an ongoing, iterative process that begins with data
collection (Creswell, 2013). Initial ideas, thoughts, and observations were recorded in
fieldnotes. After the first interview with each family in Phase 1, interviews were
immediately transcribed in order to use them to create visual timelines (see Appendix
B). The visual timeline was an analytic strategy that was developed on the Autism in
Urban Context Project and modified for use in this study. For each child, I created a
visual chronology of events related to an autism diagnosis
and services. Important
events, which were uniformly color- and pattern- coded, included ‘first concerns’ (i.e.,
who first identified developmental concerns, how these were expressed to
practitioners, and how practitioners responded to them); referrals; screenings and
diagnoses; and services, including interventions, treatments, and supports. Services
were divided into sections based on the funding source (school, regional center, or
medical insurance). After initial interviews, it became clear that a number of families
Although the primary focus of the timelines is the child’s services, pertinent details about how they came to
be diagnosed were also included in order to better understand families’ experiences with systems of care.
paid out-of-pocket for ‘alternative’ treatments such as visits to Defeat Autism Now!
vitamins, supplements, and special diets. Because families spoke not
only of the importance of these treatments but also of the significant financial burden
of paying for them, as they are not typically covered by medical insurance, the
“medical” funding section was expanded to “medical/other,” and a color and pattern
were designated for ‘CAM treatments’ (complementary and alternative medicine) and
‘out of pocket’ funding.
During the second interview of Phase 1, I showed each family their child’s visual
timeline, which was used as a guide for the interview and a means of member checking,
a qualitative research strategy which allows participants to verify, correct, modify, or
add to researchers’ interpretations (Patton, 2014; see Appendix A for the interview
guide). I solicited parents’ feedback about the accuracy of their child’s timeline,
additional significant stories that were not represented, and their overall impressions
of my interpretation of their stories. After orienting them to the timeline, I told parents
that we would go through each part together, and I asked that they interject with
corrections, additional stories they felt were important, or even to tell me if the way I
had described part of a story was ‘not the way they would say it.’ In most cases, parents
seemed surprised and even fascinated by the visual representation of their story of
their children’s services. Corrections tended to be around dates or the order of
significant events. Some parents told additional stories or re-told significant ones.
Defeat Autism Now! doctors, or “DAN doctors,” are practitioners who treat children with autism using a
contemporary and alternative medicine (CAM) approach. They are controversial in the medical community,
which generally regards the DAN treatment approach as ineffective and potentially harmful (Golnik & Ireland,
2009; see also Christon, Mackintosh, & Myers, 2010; Hanson et al., 2007).
Several made comments like Sabine, who said to her husband Kyle, “She explained it
way better than we did!,” The three of us laughed as I responded, “That's how you
explained it, I just put it all together!” After the interview, each timeline was updated
and revised. In these ways, the visual timelines were co-created products that guided
my analytic focus and understanding of significant events throughout the family’s
experience of their child’s autism diagnosis and services. Modifications from the way
we used visual timelines for AUCP included greater inclusion of events surrounding
relationships with providers and professionals, including both conflicts and
collaborative efforts. Because these kind of events emerged as significant to their
experiences managing their children’s services, I increased the use of text boxes
describing events (i.e., that had not previously been represented with a color or
pattern), using select quoted phrases from parents’ interviews.
Once interview data from Phase 1 were transcribed, I analyzed all of the
transcripts to create initial codes. After the entire data corpus was collected and
transcribed, I analyzed the data from Phase 2, modifying the codes created from the
Phase 1 data. Then the entire data set was analyzed using NVivo 10 software for coding
data segments. Coding used a narrative analytic approach, keeping stories intact (as
compared to grounded theory methods, in which coding takes place without a priori
theoretical framing in line-by-line or section-by-section fashion) (Reissman, 1993).
After all data were coded, the timelines for families who participated in Phase 2
were updated using the data collected in Phase 2. The health records from the seven
children in Phase 2 were often used as a way to try to better understand some of the
details of families’ stories, such as to compare dates or the order of events, or to see
how many hours of therapies were documented in a child’s IEP. Additionally, the
health records were used frequently as a means to try to understand professionals’
perspectives, particularly as I was not able to conduct interviews with very many
professionals. In stories of conflict, I used the health records to try to understand the
actions, intentions, and perspectives of professionals such as administrators, teachers,
Analysis involved iterative movement between shorter coded narrative
segments and health records; visual timelines, which represented broader child and
family stories; and broader discursive narratives and the political economic context.
The text boxes on the timelines that represented significant events related to families’
relationships with professionals aided in the use of the timelines as a visual
representation of overall family narratives, enabling me to think about the significance
of particular events for the family in relationship to other events. The text boxes
represented stories that prompted me to return to the data to examine more closely.
For example, Danny’s parents, whose interviews averaged four hours long and whose
speech frequently overlapped, told complex stories about two different professionals,
a school administrator, and Ms. Espinoza, Danny’s teacher during
most of data collection. Pieces of these stories were interspersed throughout multiple
interviews. The visual timeline, however, made clearer the similarities that Daniel and
Sofia were trying to convey about their experiences with the two professionals.
Although one was an administrator and had a bold, even aggressive, authoritative
Deborah Rutgers is a pseudonym. Her full name is used here and in Manuscript 2 because Sofia and Daniel
always referred to her by her full name.
personality, and the other a teacher with a quiet and unassertive demeanor, both
professionals played similar roles in the family’s story of Danny’s services. Daniel and
Sofia felt that both women resisted their plans to provide Danny with the best services,
interventions, and classroom placement. The visual timelines made visible the similar
role that the two very different women played in the parents’ quest for the right
services plan for Danny.
Then, with this deeper understanding of each family’s story of their child’s
services, I examined the articulation of specific events and experiences with broader
discursive narratives. For example, Jayden’s visual timeline records several instances
over the years of ‘Trouble’ (Burke, 1945; see also Bruner, 1990), when Sabine and Kyle,
his parents, felt that therapists working with Jayden did not seem to engage
enthusiastically in his treatment plan, reflecting to Sabine and Kyle that they did not
share the family’s hopeful vision for Jayden’s potential developmental progress. When
situated within the discourse of ‘cultural deficit’, or assumption that Latino parents do
not fight because they do not know how to or possess a culturally- influenced passivity,
the nuances of why Sabine and Kyle choose not to fight (see Manuscript 2), then
subsequently choose to fight (see Manuscript 3), become clear, bringing complexity, or
multiple stories (Adichie, 2009), to a static stereotype. What also becomes clear are the
nuanced, small actions that Sabine and Kyle took in response to each situation of
‘Trouble’ (Burke, 1945; see also Bruner, 1990), sometimes pushing back in subtle
ways, other times deciding to accept the situation at hand and wait for an upcoming
change, but each time weighing their options and risks in terms of ‘fighting’ (see
Manuscript 2). The visual timelines provided a way to conceptualize the overarching
story, see relationships among smaller narrative segments and the ongoing story, and
‘tack back and forth’ between experience and the discursive context.
Researchers who use ethnographic methodology generally agree that a reflexive
stance is necessary in order to see the self, and thus to see the other, as socially constructed
(Behar, 1996; Foley, 2002). Reflexivity in critical ethnography, however, is more than
merely a recognition and acknowledgement of one’s own process of being a researcher. It
acknowledges that ethnographic data is not discovered or found but is produced (Simon &
Dippo, 1986), and that “ethnographic writing is not cultural reportage, but cultural
construction, and always a construction of self as well as of the other” (Stacey, 1988, p. 25).
Reflexivity in critical ethnography involves a deep interrogation of how the discourses and
relations which shape the researcher are implicated in the knowledge she constructs
(Simon & Dippo, 1986). Critical ethnography requires an examination of the researcher’s
positionality, one of relative privilege, in relation to her informants, disrupting notions of
‘expertise’ (Jordan & Yeomans, 1995).
Expert versus Novice
One aspect of my privileged researcher’s positionality of ‘expert’ was unexpectedly
upended during data collection. Shortly before beginning data collection, I became
pregnant, but I was not yet ‘showing’ when I first met the parents who participated in the
study. During Phase 1, in the context of explaining something to me about their parenting
experiences, a few mothers asked if I had any children. When I responded that I was
expecting my first child, I was taken aback by the intensity and sincerity of their
expressions of joy and excitement, particularly as they had just met me. When I said
goodbye a year later, having experienced pregnancy, childbirth, and the first six months of
motherhood, I had a new understanding of why these mothers, practically strangers at the
time, had reacted with such heartfelt emotion to the news of my pregnancy.
My experience of pregnancy and motherhood impacted my data collection, analysis,
perspectives, and understandings in numerous ways. The news of my pregnancy not only
seemed to accelerate the development of a certain kind of bond between me and the
mothers in the study, it also immediately positioned me as an inexperienced novice and the
mothers as experienced veterans, experts who were eager to pass on words of wisdom and
practical advice. Once parents, especially mothers, knew that I was expecting a child, they
often finished stories about parenting experiences with, “Well – you’ll see.”
While I maintained a privileged positionality in many ways, my pregnancy
inadvertently helped to disrupt traditional roles of expertise between the researcher and
participant, because I was a ‘beginner’ in the very situation that I was asking them about,
being a parent. The particular challenges I experienced, such as an extended period of
significant ‘morning’ sickness in pregnancy and having an extremely fussy infant,
contributed to my general feelings of a lack of control and confidence, while also providing
an opportunity for the mothers in the study to take on an almost motherly, or perhaps
sisterly, stance toward me. Fabiana, who was in the midst of a number of significant life
challenges, including family conflict, a recent separation from her husband, and health
issues, seemed eager to intersperse her stories about her own challenges with questions
about how I was feeling, tips on dealing with nausea, and genuine concern for my health.
Such ways of relating, which highlighted my lack of knowledge, experience, and power,
were incredibly touching, as they were not delivered with judgment but with graciousness,
understanding, and a deep valuing of ‘dependency’ (Kittay, 1999; see Manuscript 3).
As previously acknowledged, I initially planned research questions which focused
on families’ experiences with autism diagnosis and services but quickly realized that the
data were leading me toward a singular focus on services. I also initially planned to focus
on both family and child experiences, bringing my clinician’s proclivity for engaging with
children with autism to the study to explore the ways that autism is co-constructed in
interactions, not only by adults in the child’s life but also by the child him- or herself
(Solomon, 2008, 2010). The direction my data collection and analysis took, though, focused
neither on diagnosis experiences nor the child’s experiences and co-construction of autism.
This was likely due to the fact that diagnostic experiences were less salient in the data.
However, my gravitation toward parents’ experiences was undoubtedly also influenced by
my concurrent experiences of pregnancy and motherhood, experiences that in some ways
dramatically altered the ‘knowledge that I constructed’ (Simon & Dippo, 1986) by
influencing what I noticed as salient and how I interpreted it.
This altered perspective came from a new empathy I came to have for certain
experiences that parents described. In many cases, this happened not during data
collection but during data analysis, after I had become the mother of an infant. As I read or
listened to parents’ stories, I had a new, embodied understanding of certain challenging
parenting experiences, different from how I had understood those experiences while
collecting the data. Certain parenting challenges, that are almost universal for parents of
infants, are guaranteed to lessen and fade as the child gets older. For parents of children
with autism, however, the child may not ‘grow out of’ particular phases in the same way, or
at the same rate, that typically developing children do. In the thick of parenting a colicky
infant and never sleeping more than a few hours at a time, I understood the stories I had
collected months before with new meaning: Parents’ distress about listening to their
children cry for hours while being unable to comfort them because they could not
communicate their needs (see Manuscript 1); Nicole’s challenges in managing any sort of
regular schedule, including her son Rafael’s school schedule, because of his erratic sleep
patterns; and imagining the terror of my child being ‘lost’ on a school bus for over an hour
(see Manuscript 3). There were also moments, however, when certain privileges that I have
as a mother were juxtaposed with the experiences of the mothers in the study, like the
moment when Sabine learned that I was taking a few months off during the summer after
data collection to be at home with my baby. Sabine had previously spoken a number of
times with great conviction about how it would be better for her son Jayden if she were
able to stay home with him, but she had to work for financial reasons (see Manuscript 3).
Although she expressed sincere happiness for me, I could not help but wonder how much
time off she had for maternity leave when Jayden was born, and remember the longing in
her voice when she told me she wished she could be more involved in Jayden’s schooling
and be home with him in the afternoons.
Disparities and Parental Blame
Years ago, when I moved to a big city to start working as a pediatric occupational
therapist, I experienced my first exposure to inequality in the U.S. healthcare and education
systems. As a White, middle-class young adult, my observation as a therapist, that some
families got much more than others in terms of services for their children, was the first
time my assumptions about equality in U.S. systems of care were challenged.
My perspectives on inequality, disparities, and parental blame were deeply
impacted by my experience as a graduate student research assistant on the Autism in Urban
Context Project. One particular moment during a Collective Narrative meeting held in
December 2011 stands out. Collective Narratives are a unique group interview
methodology in which six to eight families gather to discuss issues with researchers and
each other (Lawlor & Mattingly, 2001; Mattingly, Lawlor, & Jacobs-Huey, 2002; Mattingly,
2010; Solomon & Lawlor, 2013). The Los Angeles Times article about “warrior parents” had
just been published. Several parents in the study had read it or heard about it and were
eager to discuss it. Many of the African American families in the study lived in South Central
Los Angeles, an area with the most egregious disparities, which were explained away in the
article as due to ‘parental denial.’ The parents’ passionate contestation about the way they
had been portrayed in the article, and their social critique of the oppressive and unjust
healthcare and education systems, stayed with me.
In all three analyses of this study, in my critical examination of discourses that
blame parents for their children’s disparities (see Manuscript 1); impose a seemingly
impossible mandate of “intensive mothering” (Hays, 1996; see Manuscript 2); or criticize
parents as ‘overprotective’ (see Manuscript 3), I simultaneously ‘construct the self as well
as the other’ (Stacey, 1988, p. 25). At the same time, however, I also benefit from the
privilege of being a White, formally educated, middle-class mother who will not be blamed
or criticized in the same way as the Latino mothers I write about.
Contribution to Occupational Science and Occupational Therapy
In occupational science and occupational therapy, the theory and practices of
occupational justice focus on the rights of individuals and groups to engage in meaningful
occupation (Durocher, Gibson, et al., 2013; Durocher, Rappolt, et al. 2013; Townsend, 1999;
Whiteford & Townsend, 2011). In this literature, barriers to engagement in meaningful
occupations are issues of injustice. Barriers to services, however, have not been commonly
conceptualized in this literature as issues of occupational injustice. Indeed, accessing
services has not been given much attention as an occupation itself (Magasi, 2012).
Navigating Systems and Managing Services as ‘Vital but Invisible’ Occupations
Occupational therapist and researcher Magasi (2012) noted that the field of
occupational therapy has paid relatively little attention to how people with disabilities
navigate service systems, despite the fact that accessing these services is critical to the
ability of many people with disabilities to live and participate in community life. From her
ethnographic study of six women with disabilities, Magasi (2012) found that navigating
social service systems was a “vital but often invisible occupation” (2012, p. S25). It was a
‘long-term’ occupation that involved securing and maintaining services, sometimes with
little information about them; understanding and completing copious amounts of
paperwork; and continually (re)proving their eligibility for services.
Similarly, I conceptualize the engagement of the Latino families in this study with
their children’s autism services, including interventions, therapies, supports, and
classroom placements, as a complex and multi-faceted occupation. Because this included
but was not limited to navigating systems of care, I refer to this occupation as managing the
child’s autism services. As the following manuscripts will show, managing children’s
services included not only navigating systems of care but also conducting online research
on autism treatments; finding and talking to other parents of children with autism to gain
tips, insights, and information; cultivating relationships with practitioners and
professionals; attending IEP meetings; reading and making sense of long legal documents;
learning and using discipline specific terminology and acronyms; locating and attending
parent trainings and support groups; presenting arguments to professionals and
administrators about why the child should be granted particular services; monitoring the
child’s progress; making decisions about continuing, discontinuing, or switching to a
different provider; and, in some cases, learning to ‘fight’ professionals and systems of care
(see Manuscript 2).
Conceptualizing the Occupation of Managing Autism Services
Because the thread running through the three manuscripts of this dissertation
is parents’ experiences of managing their children’s autism services in the context of
service disparities, here I further develop and describe managing autism services as an
occupation. In the following ethnographic and narrative accounts, I show how
narrative phenomenology (Mattingly, 2010) has been drawn upon to examine parents’
experiences of their children’s autism services and to understand their work obtaining
services as a multi-faceted occupation.
In their ethnographic occupational science research with African American
families of children with disabilities, Lawlor and Mattingly (2009) found that for the
families, healthcare encounters were not just specific events but were embedded in
longer developmental histories and trajectories, “resonat(ing) across time to other
moments in one’s life and across place to the extent that the impact is felt in other
contexts, such as life at home, school, or work” (Lawlor & Mattingly, 2009, p. 34), a
finding that emerged from a narrative phenomenological view of families’ narratives
and significant events (Mattingly, 2010). This study of Latino families of children with
autism builds upon Lawlor and Mattingly’s (2009) findings in showing how parents’
encounters with professionals regarding their children’s autism services had
resonance throughout family life, as captured by the visual timelines (see Appendix B).
The resonance of these activities for the family’s story of the child, including the child’s
developmental trajectory, was exemplified in the ways that parents’ everyday
experiences of their children’s autism services continually articulated not only with
other areas of family life but also with their future hopes for their children.
“I Have a Lot of Faith in Everything We’re Doing.”
The narrative arc of the stories parents told about their children’s services and
the work parents did to obtain these services inevitably links their present effort to
stories about the child’s future. Similarly to Lawlor and Mattingly’s (1999)
ethnographic findings, the parents in this study also connected the here-and-now of
their children’s therapies and interventions with their future hopes for their children.
Lawlor and Mattingly found that the African American parents in their study had a
different sense of time compared to the professionals who worked with their children.
The professionals that Lawlor and Mattingly interviewed and observed often thought
in 3- or 6-month intervals, along the timeframe of treatment goals. But for the parents
in this study and in Lawlor and Mattingly’s study, the aims of therapies, interventions,
and classroom supports reached far beyond short term intervention goals, extending
into the child’s adolescence and adulthood. For some of the Latino parents in this
study, even for the parents of some of the youngest children, the concern about what
would happen to their child if and when they passed away was heavy on their minds.
The way they spoke about their hopes that their children would lead “successful” lives,
going to college, having romantic relationships, and being able to live independently,
were inextricably wound up not only with the current goals of the child’s therapies but
also with the work that the parents did to secure and maintain these interventions.
Cause they tell you, "Give them the therapies, give them all that, but most of
all, give them your love," you know, cause they need that. And I do, I mean,
not because I feel I have to, I just...it comes naturally. And, and he, oh my god I
tell my husband, "If I die, you're gonna have to clone me because my son is
like, so loving with me and he's just really like a sweet kid with me." And, and
I tell him, "He's gonna miss me if..." And he's like, "You're crazy" (laughs.).
Like, "No but you're gonna have to cause he's just..." And that's been a whole
nother thing because I try not to...I'm one of those people that likes to
prepare everything ahead, and I always think like, "Man I'm gonna be gone
one day, like I hope he's taken care of." So that's like what everything now, I
tell my husband like, "We just gotta work towards that." I mean my daughter,
so far so good. Cause they tell you siblings have a higher risk to be autistic,
but she seems fine. And it's, you know, more profound in boys, so I'm
hoping...and um, wow, it sucks, but I'm hoping that she'll help with him. You
know? But I know she has to live her own life. But, but I don't know, I mean I
have a lot of faith in um, everything we're doing, that in the end it's gonna
pay off, and that he will become more independent. Cause you do see a lot of
kids who are older now that you can't even tell they're on the [autism]
spectrum. And they're doing everything. So I'm hoping that's what the
outcome is for our son.
The Role of Professionals in Parents’ Experiences of their Children’s Services
The many activities of managing their children’s autism services brought parents
into interactions and relationships with a number of practitioners and professionals, as
described in greater detail in Manuscripts 2 and 3. Although I followed some families to
pediatrician’s offices, these medical visits and encounters with physicians did not figure
into parents’ management of their children’s services as I expected. To a large degree,
parents considered pediatricians to be exterior to their children’s autism services.
Ethnographic data below represents why parents did not view pediatricians as central to
the children’s services, as well as provides an exemplar case of a family who came to see
the pediatrician as a partner in their management of their child’s services.
“I mean, it’s very generic.” I backed into a corner with my video camera in a small
exam room, crowding in with Olivia, age 3, and her entire family: Her brother Zack, age 6,
and her parents, Miriam and Dan. Olivia and Zack were waiting to see their pediatrician for
a routine checkup. Directly ahead of me, Zack was sitting on the exam table, his bare feet
extended out in front of him, one foot resting on top of the other. The strip of exam table
paper was already crinkled and folded beneath him as he stared intently at Dan’s
smartphone in his hands, playing Angry Birds. Miriam sat to my right, off camera, in the
only chair in the room. In front of her stood Dan, in front of the door. And moving around
the small space between all of us was Olivia, wearing a flowy black sundress and bright
pink sandals. A section at the base of the exam table was pulled out, creating a platform
that Olivia stepped up onto, grabbing the long curly telephone cord that looped from a
phone attached high up on the wall. Between Olivia and the camera, on a child-height hook
on the wall, hung her pink purse shaped like a poodle, with fluffy pink poodle hair and pink
bows in its ears. Olivia pulled the phone cord down to the floor then lifted it up toward her
head, making high-pitched squeaking noises. As Dan untangled the phone cord from
Olivia’s hair, Miriam explained to me the difference between this pediatrician, who they
only visited for routine checkups, and Dr. Rena Amir, a trusted doctor who they had
described to me as “a neurologist, nutritionist, and chiropractor – she kind of does a little
bit of [it] all.” Miriam said that the pediatrician was a little more “hands off” than Dr. Amir:
It’s more like if they’re sick, I mean, it’s very generic. That’s what I feel like. I
haven’t really -, like they haven't said, "Oh, you should go to this person, I'll
have you check into this," it's not like that.
Miriam’s view of Olivia’s pediatrician was not an uncommon one in the study.
Parents tended to view their children’s pediatricians or other medical doctors as external
to the work parents did to manage their children’s services. According to most of the
parents in the study, pediatricians addressed illnesses or physical checkups, while other
professionals addressed children’s development, and in doing so, were part of the overall
plan and vision that parents had for children, active partners in parents’ occupational
experiences of managing their children’s services.
“It’s almost like you gotta do everything on your own.” Unlike the pediatricians
and primary care physicians, however, the alternative medicine providers who several
parents in the study took their children to visit seemed to be viewed as ‘on board’ with a
particular ‘try anything’ approach that the parents themselves had toward their children’s
treatments and therapies. Miriam and Dan did not necessarily seem bothered by the
differences in their pediatrician and Dr. Amir, although they wished that the services
provided by Dr. Amir were covered by medical insurance. Michael and Jessica, parents of
Mikey, however, were frustrated at their medical providers’ seeming lack of a specific
“treatment plan” to address Mikey’s development. Michael and Jessica viewed DAN!
doctors, who treat autism using an alternative medicine approach, as actively targeting
Mikey’s development through the use of vitamins, probiotics, enzymes, and fish oil.
Conversely, the parents felt that their healthcare providers failed to come up with such a
“treatment plan” for Mikey, leaving them to figure out the best ways to support and
promote his development on their own.
Michael: And we’re still fighting through it, still going through it, but to
know-, ah, it-, it-, to me, it’s just frustrating cause it’s almost
like you gotta do everything on your own, you know. And if you
don’t put the work into it or the effort into it, it’s-, I mean we…I
think we’ve explored every avenue. And I don’t know if there’s
any more to explore, other than to just keep fighting through
and see if someone comes up with something, you know. I wish
the hospital would [acknowledge it.
Jessica: [The insurances.
AMA: In what way?
Michael: Acknowledge that it’s like a real problem.
AMA: And what would that look like?
Jessica: Start a treatment plan.
Michael: Start a treatment plan at the-, [at, immediately-
Jessica: [Like the DAN! doctors.
Michael: You know I mean, hire-, I wish Kaiser, my insurance company,
would hire DAN! doctors to do that, you know what I
mean…You know, fighting with our own doctor who’s
supposed to take care of us. You know, having a shouting
match with him down the hallway at the hospital to get what
Michael’s comment about a shouting match refers to a conflict between the parents
and the pediatrician over their request for a speech therapy evaluation when Mikey was 19
months old. While this kind of frustrating struggle with physicians was not common in the
data, Michael and Jessica’s overall experience of the healthcare system as not being a place
where they found ‘answers’ about various ways they could address their child’s
developmental challenges, was common. In the broader stories of families’ experiences
with their children’s autism services, the biomedical healthcare system was, at best,
secondary to the work parents carried out to manage their children’s autism services.
Occasionally physicians wrote referrals for evaluations, but for the most part, parents felt
an absence of information or guidance from their physicians regarding their children’s
development. They saw the healthcare world as separate from the world of therapies,
interventions, and education programs that they felt were directly addressing their
children’s development. Notably, for most families, the section of their visual timelines
labeled “Medical/Other” was largely blank.
It could be that physicians were cautious about discussing “experimental” or
unproven therapies with parents, reflective of the discourse of scientific rationality that
shapes the culture of biomedicine (Good & Good, 1981). Much is unknown about which
autism treatments, therapies, and interventions are most effective for which children
(Stahmer et al., 2011). Alternative treatments in particular are viewed with suspicion by
many medical providers, who fear they are at best ineffective and at worst potentially
harmful (Christon, Mackintosh, & Myers, 2010; Golnik & Ireland, 2009; Hanson et al., 2007).
For the parents in the study who valued alternative treatments, though, they represented a
particular kind of hopeful, ‘try anything’ approach to the child’s developmental challenges,
making providers who provided or encouraged alterative treatment methods ‘on board’
with the family’s overall plan for addressing the child’s development. Sabine and Kyle
described why they appreciated a particular speech therapist who treated their son Jayden:
Sabine: She’s amazing. I learned so much from her.
Sabine: You know, we’ve always considered alternative medicine for
Jayden’s autism and she’s-, she’s the one that taught us about
all of that.
AMA: Like what kind of stuff?
Sabine: B12 shots and uh, additional vitamins that can help him,
enzymes, probiotics. Um…
Kyle: pH balance.
Sabine: pH balance.
Kyle: All kinds of different interesting things, although they’re all
theories, you know, I think we’re just willing to try anything
and see where it goes.
While only a few families in the study sought after alternative medicine treatments,
for most of the parents in the study, there was a clear line between providers who were
part of the family’s focused plan to support their child’s development through the services
and supports they received from various settings, and providers who, in the parents’ view,
did not seem to have the same vision or commitment. Population-level research indicates
that parents of children with autism are likely to rate their children’s primary care
physicians as “not good” in addressing autism-specific needs (Carbone et al., 2013), not
understanding the impact of autism on the family’s everyday life, and not providing desired
information about alternative medicine approaches to autism treatment (Liptak et al,
2006). These ethnographic descriptions give insight into these population level findings, as
parents’ feelings about their child’s physician depended in large part on how well they felt
the physicians not only understood the work parents were doing in managing their
children’s autism services, but also in the degree to which parents felt that the physician
was ‘on board’ with and could contribute to that work.
“He gave us this article on autism.” In one exemplar case, however, a pediatrician
was considered by parents to be a partner in their efforts to obtain and manage their
child’s services. Dr. Sarraf had been Danny’s pediatrician since his birth. Sofia and Daniel
felt that Dr. Sarraf did not initially know much about autism or service provision through
the regional center, but he showed a willingness to learn and curiosity about the services
Danny was receiving. The following ethnographic observation reveals how Dr. Sarraf
positioned himself as relevant to the parents’ work of managing Danny’s services, during
Danny’s 6-year-old checkup.
Just a few days after Danny’s sixth birthday, I met the family at Dr. Sarraf’s office. I
stood against the wall in narrow exam room, posters of Looney Tunes characters plastered
on the opposite wall. Daniel sat in a chair to my right, Sofia sat in a chair against the
window, and Danny paced back and forth as we waited for the doctor. Dr. Sarraf, a pleasant,
mustachioed man with a Middle Eastern accent, greeted us warmly. After a brief physical
exam, Dr. Sarraf turned away from the laptop where had had been typing and, according to
my notes of this unrecorded observation, had the following dialogue with Daniel and Sofia:
Dr. Sarraf: How is he doing with regional center? Is he still doing OT?
Daniel: No. (Daniel explains Danny’s current ABA program.)
Dr. Sarra: Oh, very good…Is anyone doing speech?
Daniel: Yes, at home and school.
Dr. Sarraf: Very good, so he’s getting all the benefits?
Daniel: Yeah, we got early intervention at age 2, cause you referred us.
(Dr. Sarraf nods.) You referred us to the regional center and
they didn’t want to say “autism” at first, but they put him in
Dr. Sarraf: And he’s in a special class?
Daniel & Sofia: Yes.
Dr. Sarraf: Which school? (Sofia gives the name of Danny’s elementary
school, and Dr. Sarraf begins typing on the laptop again.) The
classroom has how many kids?
Daniel & Sofia: Thirteen.
Dr. Sarraf: With two teachers?
Daniel: Yes, and we just got him a one-on-one, so that’s really been
Dr. Sarraf: Very good….How’s his performance at school?
Daniel: Well, there’s a big gap between home and school, in terms of
what he can do at home and what he can do at school.
Dr Sarraf: It’s a mixed class? Are there children with cerebral palsy and
things like that?
Daniel & Sofia: Yes.
Sofia: Yeah, what we see in the classroom is not what we see at home.
Daniel: Yeah, like for example, he taught himself Spanish at home.
Dr. Sarraf: Okay, so he’s catching more from his education at home than in
Daniel & Sofia: Yes.
Dr. Sarraf: Oh, I think some high-functioning children with autism get
affected by crowds. (Daniel and Sofia both nod vigorously.) It
could affect him capturing knowledge from the classroom.
Sofia: Yeah, I mean, a lot of aggression we’ve seen was because of
other kids bothering him.
Dr. Sarraf: Oh yes, I was expecting a class like that to have less than
thirteen, more like five kids.
Sofia: Yeah, in an ideal world (laughing).
Daniel: Yeah, well, we just got the one-on-one, we’ve had it for about a
month or so, so it’s already improving.
Dr. Sarraf: Very good. So you’ll probably have to compensate for the
somewhat disturbing environment at school by doing extra
work with him at home.
Sofia: Yeah, definitely.
Dr. Sarraf: Do you have any questions or anything else we can help you
The rest of the conversation turned to how to deal with the ear infection Dr. Sarraf
had just diagnosed and when Danny could get his flu vaccine. What is remarkable about
this interaction and makes it relevant for Daniel and Sofia’s experience of managing
Danny’s services is the level of detail of Dr. Serraf’s inquiry about Danny’s services. Daniel
and Sofia said that while he seemed initially dismissive about their concerns about Danny’s
development, Dr. Serraf had come around and, through his curiosity and attention to the
work they were doing, came to be considered a supportive part of their efforts. He had
given them an article on autism at one time, and although they already knew much of what
was in it, it was a meaningful gesture. Daniel said, “Yeah, he's a little behind, but he's trying
to adapt to the time and change, and he's been cooperative with us, that's why we like, you
know, choose him.” Although Daniel and Sofia had to find all of the information they knew
about autism services on their own, and felt that they knew more about autism than Dr.
Serraf, the fact that he was now supportive of their efforts was enough for them.
Professionals who Connect with the Child
While the three manuscripts in this dissertation document the numerous challenges
Latino parents faced in obtaining services for their children, when a professional supported
the parents’ efforts, it seemed to dramatically improve their experience managing their
children’s services. The parents in the study, like previous research on parents of children
with disabilities (Angell & Solomon, 2014; Lawlor & Mattingly, 2001, 2009, 2014; Solomon
et al., 2015, 2016; Solomon & Lawlor, 2013), deeply valued professionals who seemed to
‘get’ their child, work well with them, and persist in trying different techniques and
strategies to connect with the child. Michael described it this way:
It’s amazing- I guess with kids with autism, is they know who they’re
comfortable with and who they’re not. And he had teachers he was very
comfortable with, that [he] would respond right away to (snaps his fingers).
And I don’t know what it was, but then there was just some teachers he
didn’t wanna deal with ‘em.
His wife Jessica added, “And we switched ‘em.” Like the parents described in Manuscript 1
who modified the approach of ABA to fit the family’s needs, parents like Michael and
Jessica, when Mikey “screamed” for over an hour during therapy sessions, requested to
change ABA therapists until they found the ‘right’ one. Miriam and Dan, parents of Olivia,
echoed this sentiment:
Miriam: We’ve had a lot of therapists, and you can tell the difference
when, like, some people are, have worked with these kids a lot,
and like, they know that you can’t just get them right away, you
have to get them to kind of [trust you, and get comfortable.
Dan: [They have to be comfortable.
Managing Autism Services within the Flow of ‘Doing Family’
As will be further detailed in Manuscript 1 but is evident in all three manuscripts,
the management of children’s autism services took place within the flow of family life, or
among the routines, practices, and activities of ‘doing family,’ a term used in Manuscript 1
to denote the enfolded nature of family occupational life (see Segal & Frank, 1998; Segal,
2004). Sometimes, this meant that parents monitoring the effects of a therapy on the entire
family or deciding when the family needed a break from an intervention (see Manuscript
‘Doing Family’ in the Absence of Services and Supports
Returning to the scene from the Prologue at Target with Fabiana and her three
children, a seemingly mundane family trip to Target represents what family life is like in
the absence of services and supports. Fabiana had asked her regional center case manager
about camps or other activities to help keep the children occupied during part of the six
weeks when they were out of school, but she was told that the regional center did not fund
summer camps any longer as a result of budget cuts. While this story attests to Fabiana’s
inventiveness to come up with such free activities, it also reveals how great her need for
support was as she parented three young children, two with special needs, during this ‘gap’
in their services.
In the absence of supports, Fabiana was trying to use everyday experiences to
provide Mateo Jr. and Isabella with developmentally enriching occupations and
experiences (e.g., walking down the toy aisle), but for this family, such everyday
experiences are fraught with danger. While practicing looking both ways before crossing
the street or walking down a toy aisle without throwing a tantrum may in fact be the kind
of everyday learning opportunities that most parents provide for their children, with
children like Mateo and Isabella, these activities are not only more challenging to carry out
‘successfully,’ the stakes are also higher when things go wrong. Using the toy aisle as a
learning opportunity is much more difficult when the children have self-regulatory
challenges and passersby seem to give disapproving looks. Ushering three children across
the street is more fraught when the children have difficulty understanding and following
verbal commands or are prone to suddenly bolt into the parking lot. As Solomon and
Lawlor (2013) argue in their ethnographic analysis of narratives of African American
families of children with autism related to the children’s autism-related “wandering” and
“elopement,” when families are only offered support in the form of services for their
children after they wander or run off, it could be “too little too late;” even just one incident
could have tragic results.
Managing Services as a Concern for Occupational Justice
Fabiana’s struggle to keep her children occupied, provide them with
developmentally-enriching learning opportunities, and keep them safe from harm during
the summertime ‘gap’ in services reflects how significant services can be for supporting
families. Because of the importance for both children and their families, I argue that
barriers to healthcare and educational services are issues of relevance and concern to
occupational justice (Durocher, Gibson, et al., 2013; Durocher, Rappolt, et al. 2013; Stadnyk
et al., 2010; Whiteford & Townsend, 2011). The three manuscripts of this dissertation
present the challenges parents face in obtaining services under conditions of austerity; the
numerous skills and even adversarial stance some parents have to take in order to get
publicly-funded services; and the critical role that services can play in keeping children
safe. Based on the findings of the three manuscripts, I argue that the occupation of
managing children’s (or one’s own or other family member’s) services should be given
further consideration in occupational therapy and occupational science research and
scholarship (e.g., Angell & Solomon, 2014; Solomon & Lawlor, 2013; Magasi, 2012).
In putting families’ experiences of autism services as the central focal point, this
research frames managing services as a complex, multi-faceted, and “vital but frequently
invisible occupation” (Magasi, 2012, p. S25). As Magasi (2012) points out, some
occupations that people must engage in such as navigating service systems are not
‘meaningful’ in their own right but are nevertheless critical for wellbeing. The occupational
justice literature conceptualizes occupational injustices not as absolute states or statuses
but as felt differences relative to other possible opportunities in society (Durocher, Gibson,
et al., 2013; Stadnyk et al., 2010; Whiteford & Townsend, 2011). In this dissertation, I argue
that autism service disparities, and the numerous challenges Latino parents face in trying
to obtain, manage, and maintain their children’s autism services, are best understood as
differences relative to other possible opportunities in society, such as families’ abilities to
integrate services into the flow of family life.
Population-level research has made clear that Latino children with autism
experience disparities in diagnosis and services in healthcare, educational, and
community settings (Broder-Fingert et al., 2013; Liptak et al., 2008; Magaña et al.,
2012; Thomas et al., 2007). Latino parents’ experiences of these disparities, including
how they engage with, feel about, and view systems of care, have not been well studied.
This 12-month critical ethnography aims to bridge this gap in knowledge by providing
an up-close, nuanced view of the experiences of 12 bilingual Latino families of children
with autism living in Los Angeles County related to managing their children’s autism
services. Findings are presented in three standalone, publication-ready manuscripts
that follow next.
Disparities, Opportunities, and Capabilities in Latino Families’ Experiences of their
Children’s Autism Services
Amber M. Angell, MOT, OTR/L, PhD candidate
Gelya Frank, PhD
Olga Solomon, PhD
This manuscript was submitted to a journal with co-authors Dr. Gelya Frank and Dr. Olga Solomon and is
currently under peer-review. Slight formatting changes were made for inclusion in this dissertation.
Rationale: Disparities in autism services are well documented for Latino children. Because
Latino parents in our study opted out of state-funded autism interventions, we consider the
relationships among disparities, access, and justice in this situation. Objectives: We 1)
critically examine the discourse of ‘cultural deficit’ as an explanation for autism service
disparities and 2) explore the concepts of opportunity and capability to operationalize
occupational justice in the realm of social policy. Methodology: This is an ethnographic
study of 12 Latino families of children with autism in Los Angeles County. Findings:
Parents opted out of behavior therapy not because of a ‘cultural deficit’ but because of a
structural mismatch of services with the family’s occupational needs. Conclusion: To
remedy situations of occupational injustice and reduce disparities, opportunities such as
access to services must be delivered in a way that enables individuals and families to
convert them into capabilities.
A California law mandates the provision of diagnostic and treatment services for all
individuals with developmental disabilities (California Department of Developmental
Services, 2016), including autism spectrum disorder (ASD, autism from here on; American
Psychiatric Association, 2013). However, disparities in autism diagnosis and services are
well documented for children from diverse racial and ethnic groups (Centers for Disease
Control and Prevention, 2014; Mandell et al., 2009). We present ethnographic research on
the experiences of Latino families of children with autism living in Los Angeles County.
These families were offered state-funded Applied Behavior Analysis (ABA) through their
but they opted out of the intervention (e.g., some families began ABA then
decided to stop; others declined altogether; others accepted it but altered the style and
approach). This was surprising given the institutionally-ratified reputation of ABA as the
most ‘evidence-based’ autism intervention, making it usually desirable to parents
These findings suggest a way to think about occupational justice, a concept that has
gained interest among occupational therapists and occupational scientists but would
The California Department of Developmental Services (DDS) distributes state funds for individuals with
disabilities through 21 regional centers, nonprofit agencies that provide case management for individuals
living in each regional center’s catchment area.
Applied behavior analysis (ABA) based on the Lovaas model (Lovaas, 1987) is considered by many to be
the strongest ‘evidence-based’ intervention for autism because it is conducive to gathering large amounts of
quantitative data. Critics argue that much of the evidence for ABA is methodologically flawed or inconclusive
(e.g., Francis, 2005). Nevertheless, ABA maintains its reputation in research and clinical settings as the ‘gold
standard’ of autism intervention, and as such, it is often desirable to parents. It is also known to be difficult to
obtain because of stringent but seemingly arbitrary authorization requirements that vary greatly from one
regional center to another in Los Angeles County (Zarembo, 2011).
benefit from clarification (Bailliard, 2016; Durocher, Gibson, et al., 2013; Frank, 2012). The
occupational justice literature focuses on terms of injustice (deprivation, marginalization,
etc.; Stadnyk, Townsend, & Wilcock, 2010); this terminology highlights the reality that
occupational injustices are not absolute states or statuses but felt differences relative to
other possible opportunities in society. Thus the conditions constituting occupational
justice cannot be universally specified but instead consist of amelioration or improvement
within specific situations.
Like Townsend (2012) and Bailliard (2016), we see value in aligning the
occupational justice framework with the capabilities approach of economist Amartya Sen
(1999). All of the families in our study were offered ABA, which could be understood as the
regional center’s attempt to remediate disparities in autism services, but the children and
their families were unable to benefit from the opportunity because it did not lead to
enhanced capabilities for the children in the context of their families’ everyday lives (Sen,
1999). In this paper, we propose to use the distinction between opportunity and capability
occupational justice in the realm of social policy.
Latino children with autism experience significant disparities in access to autism-
related services (Broder-Fingert et al., 2013; Magaña et al., 2013). An increasingly common
institutional and cultural discourse portrays Latino parents as uneducated and passive
with regard to securing autism services for their children (Zarembo, 2011). This
explanation renders autism service disparities as the outcome of a ‘cultural deficit’ in
We use the term “operationalize,” defined as “to put into use,” in a manner similar to applied anthropology
(not quantitative analysis), in that we are using ethnographic knowledge to facilitate the application of theory
in practice settings.
parental knowledge and agency, putting the responsibility for disparities on the families
The families in our study who opted out of ABA, however, were neither uneducated
nor passive. They understood the potential value of ABA for their children’s development,
but in their experience, ABA could not be integrated and coordinated with the organization
of the family’s life. Thus, while increased access to services might appear to enable justice
and reduce disparities, achieving occupational justice depends not only on opportunity but
also on the realization of actual capabilities. An occupational perspective on the child’s
capabilities takes into account the context and organization of the family, such as how
childcare and therapy are integrated into family routines (Segal & Frank, 1998; Segal,
2004). We call this flow that constitutes the family’s everyday life ‘doing family.’
Occupational Justice and Autism Services
The occupational justice literature focuses on the rights of individuals and groups to
engage in meaningful occupation, such that barriers to engagement in occupations are
issues of injustice (Durocher, Gibson, et al., 2013; Townsend, 1999; Whiteford & Townsend,
2011). Although this focus is on barriers to occupation, rather than barriers to services (cf.
Magasi, 2012), we argue that healthcare disparities constitute occupational injustices for
children with autism from culturally diverse, socio-economically disadvantaged families.
Healthcare disparities are a recognized concern to occupational therapists
(Braveman, 2006; Scaffa, Van Slyke, & Brownson, 2008). Researchers and clinicians may
disagree about which type, frequency, and intensity of interventions are most effective for
children with autism, but there is consensus that intensive early interventions targeting
social and behavioral skills will maximize children’s current and future capacities to
participate in education, family, work, and play (Stahmer, Schreibman, & Cunningham,
2011). Therefore, we argue that disparities in access to high-quality, intensive autism
interventions are occupational injustices for children and their families, as autism services
are considered critical for children to reach their “occupational potential” (Wicks, 2005).
Operationalizing Occupational Justice: Opportunity and Capability
The capabilities approach of economist and philosopher Amartya Sen (1999) is
concerned with analyzing the relationship of wealth to wellbeing at national and global
levels. By disaggregating measures of wealth nationally and globally, Sen’s capabilities
approach exposes disparities based on social categories such as gender, race or ethnicity,
and ability. He points out that increased wealth does not necessarily correlate with
increased quality of life for a population or sector of a population. The crucial question for
Sen is not whether the world economy, a particular nation, or the state of California has
wealth, but what it can buy, or how money creates value. The value of money, in Sen’s view,
is its ability to enhance human capabilities – that is, what people are free to become and to
Similarly, key occupational justice theorist Elizabeth Townsend (1999) has made
clear that occupational injustices arise from social categories and not only individual
circumstances of occupational marginalization, imbalance, alienation, and deprivation (see
also Angell, 2014). Townsend (1999) characterized occupational justice as “economic,
political, and social forces which create equitable opportunity and means to choose,
We note the resonance with occupational scientist Ann Wilcock’s (1998) formulation of occupation as
“doing, being and becoming.”
organize, and perform occupations that people find useful or meaningful in their
environment” (1999, p. 154, emphasis added).
The occupational justice perspective lends itself to public policy, if it can be
operationalized as a relationship among disparities (occupational injustice), wealth (public
resources), opportunities (public services) and capabilities (improved outcomes for
children). It is crucial to recognize that opportunities do not flow directly to children but
are mediated by families (Segal & Frank, 1998). Opportunities for children with autism, our
research suggests, must be provided in such a way that families can effectively incorporate
them in their routines and patterns of ‘doing family.’ Studying families’ experiences with
autism services therefore provides insight as to how public policy might be adjusted so that
opportunities can be converted into capabilities.
Autism Disparities and the Discourse of ‘Cultural Deficit’
Population-level surveys have shown that the prevalence of autism is significantly
lower in Latino children (10.8 per 1,000) than in White children (15.8 per 1,000) (CDC,
2014). Latino children who meet the criteria for autism are less likely to be diagnosed, and
more likely to be misdiagnosed, than White children (Mandell et al., 2009; Shattuck et al.,
2009). There is also evidence that Latino children with autism experience significant
disparities in access to healthcare and developmental services compared to White children
(Broder-Fingert et al., 2013; Magaña et al., 2013; Thomas et al., 2007).
In California, the Lanterman Developmental Disabilities Act (AB 846) mandates that
free services be provided to individuals with disabilities throughout their lifetime
(California DDS, 2015). Under this law, the California Department of Developmental
Services (DDS) funnels state and federal funds for these services through 21 regional
centers, nonprofit agencies that provide case management for diagnosis and service
provision for individuals with disabilities who live in each regional center’s catchment area.
Although state services are to be distributed based solely on need using the same
criteria across the state, an article in the Los Angeles Times newspaper reported that in
2010, California spent far more on autism services for White children than for Latino
children (Zarembo, 2011). For children with autism ages 3 to 6, spending ranged from an
average of $1,991 per child at a regional center in South Los Angeles, one of the poorest
areas of Los Angeles County with a large Latino population; to $18,356 per child at a
regional center in Orange County, one of the wealthiest areas in the state with a large White
population. In an effort to reduce these disparities, regional centers are now required to
report annual per capita expenditures by race, part of an effort to hold them accountable
for providing “culturally and linguistically competent services” (Vismara, Giovati, & Tadeo,
2013, p. 3). Publicly available data suggests that regional centers still struggle to reduce
these disparities; differences remain as great as $25,233 per White child and $5,785 per
Latino child (South Central Los Angeles Regional Center, 2015). The impact of these
disparities is even greater considering that in California, Latino children make up 51.4% of
the population of children under age 18 (Lucile Packard Foundation for Children’s Health,
Despite efforts to reduce disparities, services remain unevenly distributed, and a
dominant discourse of ‘cultural deficit’ places the blame on families themselves. The Los
Angeles Times article reflects a stereotype of Latino parents as uninformed and passive,
claiming that educated and proactive “warrior parents” (Zarembo, 2011), primarily White
and middle class, ‘fight’ systems of care to ‘win’ services for their children (Sousa, 2011).
According to this discourse, wealthier parents have the resources and knowledge to make
their voices heard, while low-income parents from diverse racial and ethnic groups do not.
The article cites state and regional center administrators who claim that autism disparities
in California are caused by language and cultural factors and by parents failing to take
advantage of services. We critically examine this ‘cultural deficit’ model, arguing that an
occupational understanding of family life provides a nuanced, family-centered
understanding of disparities that cannot be captured in population-level statistics.
Studying Families Occupationally: Theory and Method
We utilized ethnographic methodology, which explores taken-for-granted aspects of
the social world through the study of culture, knowledge, and action. Our critical lens
“implicates us in moral questions about desirable forms of social relations” (Simon &
Dippo, 1986, p. 196). We also used an occupational understanding of family life as the
orchestration of members’ time through routines that embody meaning and value for the
entire family. Our use of the term ‘doing family’ is intended to capture this enfolded nature
of family occupational life (Segal & Frank, 1998; Segal, 2004). Similarly to Jackson’s (1998)
discussion of the usefulness of the term “doing fathering” (1998, p. 58), we use ‘doing
family’ to include family and individual occupations, family routines, and parenting style
(e.g., particular ways of addressing and responding to children’s behavior).
Recruitment and Participants
Families were recruited through one regional center in Los Angeles County that
serves a large Latino clientele (53.8%). Ethical approval for the study was obtained from
the Institutional Review Board (protocol # HS-13-00589) and the study site. All adult
participants reviewed and signed informed consent; parents who shared their children’s
health records also signed Health Insurance Portability and Accountability Act (HIPAA)
forms. Parents gave assent for children with autism in the study, as no children were able
to give written informed consent. Study personnel (transcribers) completed standard IRB
Human Subjects Protections and HIPAA trainings and certifications.
Families were recruited using a strategy proven successful on a study of African
American families’ experiences of their children’s autism diagnoses and services in Los
Angeles County (Angell & Solomon, 2014; Solomon, Angell, Yin, & Lawlor, 2015; Solomon,
Heritage, Yin, Maynard, & Bauman, 2016; Solomon & Lawlor, 2013). The regional center
sent recruitment letters to randomly selected families in their database who met eligibility
criteria. Interested families contacted the first author via phone or email. To qualify for the
study, parents had to self-identify as Latino or Hispanic; at least one parent had to be
bilingual (English/Spanish); and their children had to be 8-years-old or younger at the time
of enrollment and have an autism diagnosis documented by a licensed professional.
Participants (36 total) included 13 children with autism from 12 families (ten boys,
three girls); 12 mothers; eight fathers; one grandmother; one ABA supervisor; and one ABA
therapist. The children ranged in age from 3 years, 4 months to 8 years, 2 months.
Data Collection and Analysis
Data were collected between May 2014 and May 2015 in two phases. Phase 1
consisted of two audio-recorded narrative interviews with 12 Latino families of children
with autism (13 children) about their experiences obtaining an autism diagnosis and
services for their children. After Phase 1, six of these families (seven children) were
recruited using heterogeneity sampling (i.e., whose stories represented a range of
experiences; Patton, 2014) to continue to Phase 2. Phase 2 consisted of audio-recorded
interviews; video-recorded (when possible) observations in home, community, clinic, and
school settings; and record review of the children’s health records (i.e., medical or
educational documents related to the child’s diagnosis or services; Angell & Solomon,
2014). Fieldnotes were audio-recorded after every encounter. Data were transcribed
verbatim and pseudonyms were used for all identifiable information. Transcripts were
coded using NVivo10 software. The data corpus consists of over 80 hours of interviews,
observations, and fieldnotes, and 333 health records.
All families in the study were offered ABA through the regional center, but many
opted out of it.
Some began ABA then quit shortly after, while others chose not to begin.
Two families accepted ABA but altered it to meet the family’s needs. As our occupational
analysis reveals, parents were neither passive nor uninformed but were faced with a
dilemma when ABA was a mismatch with families’ routines and patterns of ‘doing family.’
Resisting Encroachment on ‘Doing Family’
In ABA, many areas of the child’s development are interpreted from and addressed
by a behavioral perspective (Smith, 2011). Issues like toilet training and discipline become
part of therapy, making ABA “continuous with the work of parenting” (Eyal, 2013, p. 893).
Parents spoke of the intimate nature of having someone ‘come into your home’ to “tell you
how to handle things,” like feeding, dressing, rewarding, and disciplining the child.
The ABA philosophy conflicted with some parents’ caregiving style, such as ways of
comforting upset children. Some children cried for hours during ABA, as it imposed a
Most of the data on parents’ experiences with ABA was collected in Phase 2. Notably, parents voiced their
concerns about ABA only after building trust with the first author and were more apt to share such
experiences later in the study when rapport was built.
particular structure and required their participation in ‘nonpreferred’ tasks. Danny’s
family, one of the two who accepted ABA but later altered it to use a more “naturalistic”
approach, described what it was like initially:
Daniel: It was the worst thing I've...[I was telling her -, it was horrible.
Sofia: [It's hard. Two hours of screaming
Daniel: [Three hours!
Sofia: And screaming, [crying,
Daniel: [Three hours! For four days a week, you know?
Sofia: You know, non-stop and it's like-
Daniel: Five days a week! Back then it was 15 hours a week.
Sofia: And as a parent, you're like, "Oh my gosh…Should I walk in
there and see what's going on? Can I go in there?…
Daniel: You're frustrated. It's your 2-year-old son. And somebody's
pushing him like this, so it's difficult.
Sofia: It's difficult to watch.
Parents had to manage children’s ‘meltdowns’ during routine daily occupations, a
distressing experience when children were unable to verbally communicate their needs.
Nicole, mother of Rafael, described the family’s experience of Rafael’s outbursts: “He was
just crying and crying and crying. And it was really hard, like emotionally, on all of us to
hear him like that. Cause we don’t understand and he can’t tell me.” Nicole frequently
canceled ABA because Rafael was “triggered” during sessions. Later, she changed ABA
A bracket [ indicates an overlap in Daniel and Sofia’s talk.
companies, hoping for a different experience: “I just don't wanna hear him cry anymore. He
cried a lot during other therapies so I just don't want him to cry anymore.” Fabiana, who
has two children with autism, had recently separated from her husband. She knew that
starting ABA would involve a difficult “adjustment period” for her children, and this was
unthinkable given the family’s challenging circumstances.
Parents also objected to ABA therapists’ instructions to ignore their children’s
tantrums, a behavioral technique intended to ‘extinguish’ undesirable behaviors
2011). Jayden’s family, which also accepted ABA but altered it to fit their family
‘philosophy,’ told their therapist’s supervisor that this technique was not right for Jayden
because his behavior was communicating a need. His father Kyle said:
We came to the realization that…all the acting out…was not for attention, but
he was trying to communicate he was upset at something. And when we
ignored it, it wasn't working in his benefit. He was actually getting worse
because all he wanted to do was communicate he was angry or he didn't like
something. And I…let [the supervisor] know, “For my son, this isn't quite
gonna work out…because he's actually trying to communicate that he's
In altering the therapy approach, Kyle was also insisting on his way of ‘doing family,’
which involved a particular way of seeing, understanding, and responding to his child. Kyle
and Sabine’s parenting approach entailed seeing Jayden, who at age 5 ½ was considered
“nonverbal,” as a communicative being whose behaviors reflected a rich subjectivity and
A cornerstone of the ABA philosophy is to view children’s challenging behaviors as ‘attention-seeking’
rather than communicative. The two opposing views stem from different theories of the child’s subjectivity
inner world, and whose emotions and desires deserved individualized, contextualized
A short ethnographic scene reflects this way of ‘doing family.’ I followed the family
around Target one evening with my video camera. Every payday, the family went on an
outing to Target. They shopped for necessary items, but at a leisurely pace; it was also a
family activity. Jayden bounced excitedly as we walked into the store, perhaps anticipating
the Slurpee that he got at the end each time. Although Jayden had minimal verbal
communication abilities and it was often difficult to judge his capacity for making decisions
or understanding verbal requests, Sabine and Kyle nevertheless continually tried to engage
him during the shopping trip, reading every behavior as intentional. When he walked
toward the music aisle, Sabine said, “Look, he really- his favorite area.” When he pulled the
shopping cart toward the aisle, she said, “See? He’s already pulling us over.” As Jayden
entered a music aisle, Sabine said, as if narrating his voice, “Where is it?” Kyle, also
narrating what Jayden might be thinking, said, “I know it’s here somewhere.” When Sabine
pointed out the DVD aisle that she thought Jayden was looking for, and he did not respond
with recognition but looked toward a display of books, she said, “He’s like, ‘I’m not looking
for that, mom.’” Kyle replied, “I’m looking for the books!” This brief moment of family life
reveals the ways that a view of Jayden’s behavior from a purely behavior perspective was
misaligned with the parents’ view of Jayden’s subjectivity. It’s important to note that
according to the parents who chose to accept ABA for their child, individual therapists
sometimes shared the parents’ view of the child’s intentionality and subjectivity; it was the
philosophical approach of ABA that was a mismatch.
Orchestrating Family Routines
Parents also based their decisions about ABA on achieving a particular balance of
work and play for their children. When Danny qualified for 19 hours of therapies per week
at age 2, his father Daniel thought, “When does he have time to be a kid?” Fabiana, with
university-level training in education, had the skills to replicate the school’s structured
learning environment at home but chose not to: “I’m not gonna be like, ‘Come on, it’s
learning time 24/7’…It’s not that I can’t, I just don’t want to.” In these situations, parents
made decisions to shape the kind of life that they wanted their children to have, one with a
balance of structured learning, play, and rest.
Parents also considered their own balance of work and rest, an acknowledgement
that parents’ health is tantamount to the entire family’s wellbeing. For some, managing
numerous challenges the family was facing took precedence over potential benefits of ABA.
In 2009, the state mandated parent involvement in regional center-funded ABA sessions
(California Department of Developmental Services, 2009). Fabiana was caring for three
children with little family support, recently separated from her husband, and experiencing
health issues. She had heard that ABA was “really intense” and knew that her participation
would be required for every session. Based on her husband’s previous work as an ABA
therapist, Fabiana said, “It's that type of job where they go out to the client, they have a
parent sign, and that's their check, you know, and I don't want to have someone's livelihood
or income on my hands.” One reason she opted out of ABA was that she worried that if she
needed to occasionally cancel a session to have a break, the therapist would not be paid.
For Nicole, mother of Rafael, ABA was not flexible enough to accommodate her
family’s scheduling needs. She described the ABA company that she had recently quit
receiving therapy from:
The therapist…was very accommodating but just the supervisors, they
weren't very understanding. And especially when I had him [her baby], I
asked like, "Can we take like a week off?...We need to get adjusted, it's a new
baby." And no, they didn't want to give me that. They were telling me that the
cancellations were too much. Like, I just had a baby! He's not sleeping well,
I'm not sleeping well, no one's sleeping well. I don't want nobody here right
now…They weren't very accommodating…I gave them too many chances so I
was just done with them.
Sarah, a single mother and college student, began ABA for her daughter Gabriela
during data collection but quit shortly after, finding that it left her with no time for her
other daughter, Camilla:
I was always with her [Gabriela], I mean Monday through Sunday, from
morning to night. And it gets very overwhelming after a while. And I was
working and going to school and then Camila, she's told me so many times,
"You have no time for me, you're always worrying about Gabriela."…I try to
keep everyone happy!...I'm exhausted by the end of the day!
From a policy and population level perspective, giving families access to the ‘gold
standard’ of autism intervention would presumably ameliorate the problem of service
disparities and enable justice. However, for the families in our study, the opportunity for
services did not lead to a reduction in disparities because of a structural mismatch between
the philosophy and approach of ABA and the families’ occupational needs. The
intervention, as offered (opportunity) did not enable families to ‘do family’ as desired
(capability). In contrast to the ‘cultural deficit’ discourse about Latino parents as
uninformed and passive, the parents in our study were knowledgeable and agentive, aware
of the potential benefits of ABA but making deliberate decisions based on the entire
In offering all families ABA, an intervention that parents often have to ‘fight’ to
receive (Zarembo, 2011), the regional center was likely complying with a 2009 change to
the Lanterman Act that prohibits the purchasing of “experimental” or ‘unproven’ therapies
(California Department of Developmental Services, 2009, p. 1). There is an obvious
rationale behind only offering families interventions that have been proven effective, and
the law aligns with the recent ‘evidence-based’ paradigm shift in healthcare. However,
critics have argued that the supposed objectivity embedded in the ‘evidence-based’
paradigm obscures not only the structural and sociocultural forces that often shape what is
considered ‘evidence,’ it also renders invisible the political process of health policymaking,
which increasingly relies on evidence-based medicine to make decisions about what kinds
of treatment will be funded (Gordon, 2006).
These findings raise critical policy questions for autism service delivery: What
counts as ‘evidence’ in autism research, and how can evidence-based practice mandates be
reconciled with families’ preferences? Should families be able to choose which autism
interventions they are offered via public funding? Further, would simply giving parents
greater choice about their children’s autism services truly support their capability to ‘do
family?’ Parents may already face an overwhelming number of ‘choices’ related to their
children’s autism (Valentine, 2010). Anthropologist Annemarie Mol (2008) argues that for
individuals with chronic conditions, increasing ‘patient choice’ does not necessarily
improve their ability to live their lives with the condition. She argues that a ‘patient choice’
discourse actually reflects increasing consumerism in healthcare, and that traditions and
practices of care will better support patients. How would service delivery guided by a ‘logic
of care’ rather than the logic of the market better support families’ capabilities to ‘do
family’ with their child with autism? How could an occupational perspective on family life
contribute to this ‘logic of care’ in social policy?
Our ethnographic data enabled an up-close, nuanced look at why Latino families in
our study opted out of ABA for their children. As we have shown, viewing family life
through an occupational lens provides a better understanding of service disparities than
the dominant ‘cultural deficit’ discourse, which blames parents for disparities. The
philosophy and approach of ABA was a mismatch with families’ occupational needs.
Therefore, the opportunity for services did not enable the capability to ‘do family’ in a way
that was meaningful to them. As we have shown, the concepts of opportunity and capability
(Sen, 1999) can support the operationalization of occupational justice. To remedy
situations of occupational injustice, opportunities, such as access to services, must be
delivered in a way that enables individuals and families to convert them into capabilities.
“You Have to Be Ready for Battle”:
Latino Parents’ Experiences of their Children’s Autism Services in the Era of Austerity
This paper presents findings of a 12-month urban ethnographic study of the experiences of
12 bilingual Latino families of children with autism related to their children’s autism
services, including treatments, interventions, and supports, in Los Angeles County. Some
parents engaged in “battles” with systems of care, while others chose not to fight, fearing
that professionals might mistreat their children in retaliation. Despite these differences in
parents’ experiences, they found that publicly funded services that their children had a
legal right to were not given to them unless the parents ‘fought’ for them. These
experiences intersect with an emerging ‘autism parent’ discourse, ratifying a cultural
model of “intensive” parenting (Hays, 1996) in which parents, usually mothers, ‘fight’
systems of care to ‘win’ services for their children. I argue that the ‘autism parent’
discourse is shaped by White, middle- and upper-class resources and capital. Although the
Latino parents in this study also had to fight, some were nevertheless denied services for
their children. Building from narrative phenomenology (Mattingly, 2010), I problematize
the invisibility and tacit normativity of the processes that cause parents of children with
autism to feel that they have to fight to obtain services and relate families’ experiences to
conditions of austerity that create a depleted public services environment. I show how the
‘autism parent’ discourse obscures the double standard applied to evaluate the
engagement of Latino parents in their children’s services: Latino parents can fight and
possibly ‘win’ services but often meet even more resistance from administrators; or they
can choose not to fight to ensure that professionals ‘like’ them and will not mistreat their
children, at the cost of not ‘wining’ the services that they feel their children need.
If I feel that my son needs more speech therapy and things like that, why am I a bad
person for asking for that?...It’s like they don't wanna pay for anything…They
always say, "It's budget," you know, they don't have the money, but I don't know.
Like, they spend in other areas.
--Elizabeth, mother of Tanok
We wanted to fight that, but at the same time these are the people that spend an
awful lot of time with our child. Do we really wanna make enemies within a
[school] district? And we went like, "Well, no," and then that's when we found out
that she was retiring this year and it's like, “Okay so we just have to wait her out
then.” So-, and that was kind of the course of action we took. Can you just imagine
having to wait out an educator? It's the hardest thing (sighs).
--Kyle, father of Jayden
If I went in there and I was just a different ethnicity, would she have treated me the
same? If I was a White woman, fighting for my children, with all the credentials
that I have, would you still have treated me the same? Would you have spoken to
me the same way? And blocked me from the services that I want?
--Sofia, mother of Danny
These quotes come from interviews with Latino parents about obtaining services for
their children with autism spectrum disorder (ASD, autism from here on; American
Psychiatric Association, 2013) in Los Angeles County. The interviews were part of a 12-
month urban ethnographic study of the experiences of 12 bilingual Latino families of
children with autism related to their children’s autism services, including treatments,
interventions, and supports. As parents described their experiences of their children’s
autism services, they used war metaphors to index the adversarial position they felt they
had to take against systems of care
in order to receive the services: “Everything is a fight.”
As the previous three quotes indicate, the parents responded to this situation in different
ways: Some engaged in long, difficult “battles,” while others chose not to fight, fearing that
their children with autism would be mistreated in retaliation. A common theme, however,
was that publicly-funded services, which the children were legally entitled to on the basis
of their diagnosis,
were not given to them unless their parents acted in line with what has
come to be known as an ‘autism parent’ (de Wolfe, 2014; Silverman, 2013; Zarembo, 2011).
This paper examines how the Latino parents participating in the study narrated,
negotiated, and resisted the identity of an ‘autism parent.’
The discourse of an ‘autism parent’ ratifies a cultural model of parenting, denoting a
type of parent, most often a mother, who ‘fights’ with systems of care to ‘win’ services for
her child (de Wolfe, 2014; Silverman, 2013; Sousa, 2011; Zarembo, 2011). This discourse is
exemplified in an article published in the Los Angeles Times in 2011. A photograph of the
child in his classroom, and the city where the family lived, tacitly convey the family’s upper-
middle class status and Whiteness.
From the day her son was diagnosed with autism nine years ago, [mother’s
has made it her full-time job to find him the best possible help.
Hiring lawyers and experts to press her case, she established herself as a
mother whose demands could not easily be dismissed. The result has been a
bounty of assistance for [child’s name]: A behavioral therapist who works
with him at home and comes along on family outings, a personal aide at
school and specialists to design his curriculum, improve his speech and
refine his motor skills. So far, the state of California and the Los Angeles
Children with autism are eligible for state- and federally-funded services under the Individuals with
Disabilities Education Act, Parts B and C (U.S. Department of Education, 2004a, 2004b).
To be considerate of this family’s privacy, I have omitted the real names used in the article.
Unified School District have spent at least $300,000 on specialized services
for [child’s name]…Getting a wide array of help for an autistic child can
require waging a small war with the gatekeepers of state and school district
services (Zarembo, 2011 para. 1-3, 7; emphasis added).
Many parents of children with autism in California must ‘wage a small war’ to
ensure that their children receive services. At the time of the Los Angeles Times publication,
only one tenth of the California public school special education system was made up of
students with autism, but one third of the disputes on record were between families of
children with autism and the state (Zarembo, 2011). The discourse of an ‘autism parent,’
however, is tacitly rooted in White, middle- and upper-class experiences and social capital
(Bourdieu, 1986; Wall et al., 1998). Although the Latino parents in this study experienced
acquiring their children’s services as a “battle,” their narratives departed from the one
captured by the Los Angeles Times article above: Even when they ‘waged small wars,’
several were nevertheless denied services for their children. The dominant discourse
describing Latino families is exemplified in a statement to the Los Angeles Times by an
official of a Los Angeles County regional center in response to the previously mentioned
article (Zarembo, 2011). This official said that these families often feel stigmatized by an
autism diagnosis and take only minimal advantage of the services available: “Even though
they have the diagnosis, they still aren’t coming to terms with it” (Zarembo, 2011, para. 37).
This interpretation echoed a written statement from the California Department of
Developmental Services, attributing disparities in funding for Latino children and other
children of color “to language and cultural barriers” (Zarembo, 2011, para. 35).
Drawing upon ethnographic interviews, observations, and health records, I build
from Mattingly’s (2010) narrative phenomenology to critically interrogate this discursive
positioning of Latino parents of children with autism as passive and uninformed (Zarembo,
2011). Most of the parents in the study spoke about making deliberate decisions regarding
whether and how to fight for their children’s services. Heavy on their minds was the
possibility that their actions could lead to retaliation in the form of professionals
mistreating their children, many of whom would not be able to tell their parents because of
their autism-related communicative limitations. I will show that the ‘autism parent’
discourse obscures the ways in which Latino parents face a double standard: Those who
fight may obtain services but at great financial, emotional, and social cost, including the risk
of being negatively perceived by professionals as overly entitled consumers of public
funding; while those who do not fight are at risk of being labeled passive, uneducated, and
unaware of their children’s developmental needs. How families are seen by professionals
who work with their children is consequential, as assumptions about parents shape how
professionals, who have the power to distribute or withhold services, respond to them
(Angell & Solomon, 2014; Goffman, 1959).
The ‘Autism Parent’ as a ‘Good’ Parent
Contemporary ideologies of “intensive mothering” (Hays, 1996) and “concerted
cultivation” (Lareau, 2011) require parents to be ‘intensively’ involved in their children’s
lives, actively ‘cultivating’ their development. Despite shifting gender roles, mothers
continue to be largely responsible for their children’s development, and caregiving is still
often perceived as ‘naturally’ gendered (Blum, 2007; Caplan & Hall-McCorquodale, 1985;
Dominant cultural models of parenting designate certain kinds of mothers of
children with disabilities as ‘good’ and others as unfit or even responsible for their
children’s lack of developmental progress (Blum, 2007; Caplan & Hall-McCorquodale, 1985;
Landsman, 2003, 2009; Litt, 2004; Rapp & Ginsburg, 2001; Sousa, 2011). As Blum (2007)
writes, mothers of children with disabilities “must intervene more continuously and
‘shrewdly’ in their children’s institutional lives (Lareau 2003, 180)” (Blum, 2007, p. 205).
This discourse transfers family life from the private to the public sphere, with an
expectation that parents be aggressively involved in their children’s development (Sousa,
2015; see also Lilley, 2011a). Under the guise of ‘family-centered care’ and of ‘healthcare’
and ‘education reform,’ a neoliberal discourse of “no legitimate dependency” (Peacock,
Bissell, & Owen, 2014; see also Hodgetts et al., 2013) shifts the burden of responsibility to
parents to take on the role of an around-the-clock, in-home therapist, which is used as
justification for reducing formal support from professionals (Douglas, 2010; Hodgetts et al.,
2013; Litt, 2004).
For ‘autism parents,’ the “hyperfocus” (Sousa, 2011) of “intensive mothering” (Hays,
1996) involves securing of every cutting-edge treatment that might enrich children’s
development; accessing advice from but also challenging the expertise of professionals
from medical and educational settings (Sousa, 2011); and ‘activating’ their social and
cultural capital (Bourdieu, 1986; Lareau, 2011) on behalf of their children. This “advocacy
carework” (Litt, 2004) has been characterized as “vigilante” action (Blum, 2007) to convey
that mothers take the ‘law’ into their own hands when institutional authority is deemed
In line with this literature, I use the term “mother” here. However, I use it to refer more broadly to the
activities and occupations of ‘mothering’ (Lawlor, 2004), the kind of caregiving which more often falls to
mothers but was also carried out in this study by fathers, step-fathers, grandparents, and other kin.
inadequate or too slow to act (see also Silverman, 2013). Although the accomplishments of
these “warrior” mothers (Sousa, 2011) have led to important advances in autism treatment
and research (Silverman, 2013), the “seemingly omnipresent warrior-hero archetype
conveyed and reaffirmed through mass-marketing and broadened technologies indicates
that there is one primary method for being a good mother of a child with an intellectual
disability, regardless of cost” (Sousa, 2011, p. 239).
The ‘Autism Parent’ as Tacitly White and Middle-Class
Although seemingly a gender-, race-, and socioeconomic-neutral term, the ‘autism
parent’ frequently indexes a White, middle- or upper-class, college educated mother who
gives up her career to stay home and devote full time efforts to manage and oversee her
child’s autism services (Silverman, 2013; Sousa, 2011; Zarembo, 2011). It is not uncommon
for her to intervene at a policy level as an outspoken advocate, well-versed in legal nuances
of the Individuals with Disabilities Education Act
(IDEA; U.S. Department of Education,
2004a), on behalf of all children with autism. Although it may seem unreasonable to expect
political engagement from all parents of children with autism, this expectation is implicitly
conveyed in measures that professionals use in clinical settings to assess parents’ resiliency
in the face of their child’s disability. For example, the Family Empowerment Scale (Koren,
DeChillo, & Friesen, 1992), a ‘strengths-based’ measure of parental empowerment, includes
a section titled “Systems Advocacy.” Parents are asked to rate themselves on questions
such as, “I tell people in agencies and government how services for children can be
improved,” “I get in touch with my legislators when important bills or issues concerning
The Individuals with Disabilities Education Act Part B (U.S. Department of Education, 2004a) is U.S.
legislation that ensures that students with disabilities are provided with a Free Appropriate Public Education
(FAPE) that is tailored to their individual needs.
children are pending,” and “I know how to get agency administrators or legislators to listen
to me.” It is unclear to what extent the authors of this measure consider these items to be
normative, but it is likely that many parents would interpret these questions as implicative
of what they should be doing in order to be a ‘good’ parent (Gernsbacher, 2006; see also
Angell & Solomon, 2014; Solomon & Lawlor, 2013).
Even White, middle- and upper-class ‘autism parents’ face challenges in their efforts
to obtain services for their children. For example, Matthew Asner, the father of a son with
autism and executive director of corporate development for Autism Speaks Southern
California, said in an online interview: “You have to be a squeaky wheel in order to get the
services that you need. This was a revelation to me. It’s just bizarre, and unfortunate”
(Interacting with Autism, n.d.). Low-income parents face even greater challenges while
‘being a squeaky wheel’ to secure services in a public services environment that is
increasingly defunded and became even more depleted during the economic crisis of 2008.
When public services are defunded and institutional ‘turf wars’ allow private insurance
companies to shirk responsibility for medical treatments, the public school system may be
the only avenue for children in low-income families to receive interventions like physical,
occupational, and speech therapies (cf. Blum, 2007). However, the education system is one
with documented disparities in allocation of special education services for children of color
(Harstad et al., 2013; Palmer, Walker, Mandell, Bayles, & Miller, 2010). “When schools are
‘stretched,’ mothers learn that entitlements are not fulfilled for their ‘budget-buster’
children (Park 2003) without vigilante action” (Blum, 2007, p. 213).
Even when low-income Latina mothers of children with developmental disabilities
strategically cultivate their children’s development, they still may not be recognized as
engaged, ‘activated’ (Lareau, 2011) parent advocates (Sousa, 2015). The imperative to fight
for publicly-funded services powerfully intersects with race, ethnicity and class (Hill
Collins, 2000) to produce a different experience of the ‘autism parent’ mandate for
working-class Latino families, who already face disparities in autism diagnosis and services
compared to White families (Broder-Fingert et al., 2013; Centers for Disease Control and
Prevention, 2014; Mandell et al., 2009; Valicenti-McDermott et al., 2012).
Recruitment, Participants, and Consent
Ethical approval was obtained from the University of Southern California Health
Science Campus Institutional Review Board (#HS-13-00589) and the study site, a regional
center in Los Angeles County that serves a large number of Latino families (53.8%).
Recruitment letters were mailed to a random computer-generated list of eligible children’s
addresses created by regional center staff. Interested families contacted me by phone or
To qualify for the study, the children had to be 8 years or younger and have a
documented autism diagnosis by a licensed professional, and at least one parent or
caregiver had to be bilingual (English/Spanish) and self-identify as Latino or Hispanic.
Participants included 13 children with autism from 12 families; 12 mothers; eight fathers;
one grandmother; and two professionals (a therapist and therapy supervisor). The
socioeconomic status was left open; however, most of the families lived in cities with
median annual incomes between $30,000 and $60,000.
All participants reviewed and signed IRB-approved informed consent forms.
Parents gave assent on behalf of children with autism because none were able to give
Data Collection and Data Corpus
Data were collected between May 6, 2014 and May 16, 2015, in two phases. Phase 1
(3 months) consisted of two audio-recorded narrative interviews with 12 families (19
parents, one grandmother) of 13 children with autism
about their experiences of their
child’s autism diagnosis and services. Next, six of these families were recruited using
heterogeneity sampling to represent a range of experiences (Patton, 2014). For Phase 2, I
followed the six families for 9 months, collecting audio-recorded interviews with parents
and practitioners; video-recorded observations in home, community, clinic, and school
settings; and children’s health records (Angell & Solomon, 2014). The data corpus consists
of almost 80 hours of audio and video data, including 40 interviews, 10 observations, 60
fieldnotes, and 333 health records.
Data were transcribed verbatim and coded using NVivo10 software. After the first
interview, I created visual timelines for each child, with uniform color- and pattern-coding
of events related to an autism diagnosis and services. During the second interview, I used
the timelines as an interview guide and member checking strategy (Patton, 2014) to elicit
families’ feedback about my interpretations. Revised timelines were used to complement
narrative analysis (Mattingly, 2010) by facilitating an iterative ‘tacking back and forth’
One family had two children with autism diagnoses.
between the particularities of experience in narrative data, the ‘bigger picture’ of family
narratives, and the broader discursive context.
Only one couple, Lydia and Edward, were completely content with their child’s
services and did not feel forced to fight. Notably, they lived in the city with the highest
median annual income. Despite their ease in obtaining services, Lydia and Edward felt
“fortunate” and “grateful,” because they knew that many families struggled to receive
services. The rest of the parents in the study described a range of experiences of their
children’s autism services. Some were self-proclaimed ‘autism parents’ who had learned
that they must ‘fight’ the very systems of care that they had previously trusted to act in
their child’s best interests. Others did not want to fight but, during the course of data
collection, felt driven to take an adversarial stance with the school district after a catalyst
event (e.g., the child’s safety was put at risk). Other families upheld their decision not to
fight, despite having concerns about their children’s services, and engaged in sophisticated
intersubjective work during encounters with professionals, carefully calibrating their
approach in order to ensure that professionals ‘liked’ them and did not retaliate against
them by mistreating their children. I detail each of these experiences below.
I. “We’re Your Typical Autism Parents, You Know? We've Learned How to Fight.”
“So the first time he got me on that.” Self-described “autism parents,” who had
“battled” systems of care, told stories of why they began those battles, after their trust in
those systems was broken. Parents initially assumed that professionals had their child’s
best interests in mind, but they learned that professionals sometimes made decisions based
on what was best for themselves or the institutions they worked for. Elizabeth told a story
of learning that she had a legal right to say “no” when a teacher wanted to adjust her son
Tanok’s goals on his Individualized Education Program (IEP), a document tailored for each
special education student in the U.S. public school system that details their services,
supports, and goals (U.S. Department of Education, 2004a):
I was very ignorant at the time cause I didn't know, when [Tanok] first
started, like maybe four or five months into the program, when he was 3[-
years-old], the teacher met with us and said, "You know, I'm gonna adjust his
goals, I think we aimed too high." And I was stupid and I didn't know. I
could've left them the way they were and I could've said, "No." I didn't know I
could do that. And he totally like watered them down. Like really like simple
goals that I thought, "Man, do they think my son's like this low-functioning?" I
didn't know I could like say "No," you know, and leave them the way they
were…Because you know what? On paper [the teacher is] gonna look bad if
his kids aren't meeting his goals. And I didn't know that. So the first time he
got me on that.
From Elizabeth’s perspective, this story indexes her initial naiveté about
professionals who will ‘get you’ if you’re not on the alert for ways they are acting to their
own advantage. Although parents also told stories of helpful and supportive professionals,
they frequently told stories about how they had to be vigilant because some professionals
did not have their child’s best interest in mind.
“The bottom line for this district is a dollar.” Many families felt that
administrators were financially motivated to not provide services to children. Like
Elizabeth’s observation in the opening of this paper about how school districts say they do
not have money for services but spend money in areas other than special education, a
father in the study named Daniel had a similar observation. Daniel, who used to work for a
financial firm that had its own lawyers, recognized what it cost for the district to bring their
own attorney to IEP meetings for Daniel’s son: “Which makes me wonder – you have
money in the books for an attorney, but you don’t want to spend money on kids.” Families’
experiences with services intersected with increasingly neoliberal state and national
economic policies of defunding public services. Elizabeth and Daniel’s observations
highlight the way that claims about ‘tight budgets’ obscure the political nature of how
institutions choose to allocate funding.
When administrators invested extensive time and energy fighting against parents’
requests for desired services, it seemed to parents that it must be driven by financial
motives. Fabiana was ‘fighting’ to get an aide for her son Mateo Jr. on the school bus after
he was ‘lost,’ unaccounted for by the transportation department for an hour (see
Manuscript 3). She said, “They may say, ‘Oh, well you know, I understand as a parent,’ I
don't think they do. I think they're more looking at it as a business, on the business side.
Because essentially it's all about the dollars.”
Daniel and Sofia spent an entire school year fighting a classroom placement that the
school district designated for their son Danny. The district representative, administrator
said that Danny should be in a Los Angeles County classroom, where
children with more “severe” disabilities are placed. Sofia and Daniel argued that the
standardized intelligence tests that this recommendation was based on were flawed,
Deborah Rutgers is a pseudonym. She is referred to by a full name because this is how Sofia and Daniel
always referred to her.
because they did not reflect Danny’s many abilities, such as teaching himself advanced
geometry and to speak Russian by watching YouTube videos. Deborah Rutgers, who had a
reputation as a “bulldog” who caused parents to leave IEP meetings in tears, spearheaded
the “battle.” Sofia recalled how she could not sleep or eat that year: “That was the worst
year in my life. The worst.” Daniel and Sofia felt that Deborah Rutgers’ efforts to place
Danny in a county classroom were financially motivated, because they understood that
school districts received a referral fee from the county for each child placed in county
classrooms. They also felt that the district was trying to prevent spending money on
services that Danny would likely need if he were in a more challenging classroom. Daniel
and Sofia learned that Deborah Rutgers had “political aspirations,” so saving the district
money could bolster a future local political campaign. Sofia said, “All she cares about is the
This was a recurrent story among some of the families in the study, about a person
in a position of power who had ulterior or even selfish motives, “someone who would
battle people and not give away services to them, save [the school district] money in the
long run,” part of a plan to “weasel their way into positions of power.” When asked to
elaborate on this type of person, Sofia responded with “the perfect story.” Sofia, a regular
education teacher (in a different school district than the one Danny attended), was granted
permission to attend an autism training for special education teachers in her district.
During the training, the instructor told teachers that if a child in their classroom was
provided with a one-to-one aide per their IEP, “that person can help in the classroom too.
They can help with the other kids as well.” The instructor also told teachers to never
mention that a child might need “electronics,” or an electronic communication device,
because if parents learned they could ask for one, the district would be required to assess
and potentially provide the device for the child. “Don’t ever, as a teacher, don’t offer those
kind of services to them.” Sofia was angry:
I raised my hand and I'm like, "I want you to know that I'm here as a
parent…And I don't appreciate you training these teachers in that way." I go,
"I think that's very unethical and unprofessional.”…She kind of just went like,
"I'm just letting them know what their rights are." I go, "That's not their
rights. What about parental rights?” I go, “Did you forget about that? Because
we're here for the children, and we're here for those families. We're not here
to make us look good and feel good and get the money, you know, money for
the district." I go, "What side are you on?"
Sofia’s outrage, that teachers were pressured to save the district money rather than
do what was best for children, was something that many parents suspected. Fabiana,
whose husband Mateo Sr. was a special education teacher, explained the pressure that
teachers are under to go along with their school district’s recommendations, even if they do
not agree with them: “I get where she’s coming from, [Mateo Jr.’s] teacher. She's just the
messenger, and I'm almost positive, just like Mateo Sr. said, sometimes the administration
pushes you to do something.”
“They pretty much stay quiet on both sides, which doesn't help the parent.”
Some parents tried to give individual teachers or therapists, whom they recognized had
less power than administrators within an institution, the benefit of the doubt. A common
feeling among parents, however, was that the system operated in such a way that
information about services was intentionally hidden from families (Hodgetts et al., 2013).
Sabine, mother of Jayden, noticed how the regional center and school district, which were
both providing services for Jayden, were “careful with each other.” To avoid stepping on
each other’s toes, “they don’t give you needed information.” For example, the regional
center might know about a service that the school district could provide that Jayden would
benefit from, but “regional [center] won’t tell us anything about the school district because
the parent will be like, ‘Well, regional told me that you have to pay for this.’…So they both
stay quiet, and we're the ones that don't benefit from this.”
Families frequently told stories about individual teachers or therapists who secretly
coached them about how to ask for a service or support. These individuals wanted to help
families but felt obligated to be loyal to their employers. An occupational therapist working
with Jayden gave his mother Sabine tips about how to try to ask for an iPad to help Jayden
communicate: “You need to e-mail this person, [but] you didn't get that e-mail from me, you
got it from the Internet." Families were grateful for these tips and felt validated when
professionals secretly told them things like, “I hope you get what you want” or “I can’t
believe they’re treating you this way.” However validating this was, covert tips did not give
parents the publicly expressed support of professionals’ ‘epistemic authority’
Raymond, 2005; see also Solomon & Lawlor, 2013) during meetings, which served to
underscore how alone parents were in their fight (Sousa, 2011).
The practice of keeping information ‘hidden’ from families has a potential
consequence that is in direct opposition to the interests of systems of care. Parents like
‘Epistemic authority’ refers to the way that an individual’s knowledge and views are considered valid or
authoritative by another person or group of people regarding a particular issue, based upon the individual’s
social identity and ‘epistemic right’ to information (Heritage & Raymond, 2005).
Elizabeth, feeling betrayed after learning that systems of care could not be trusted, began to
fight for whatever they could get. Her dismay at discovering that important information
about services was being hidden from her drove her to try to get ‘anything she could’ for
her son Tanok. At first glance, this may appear to be a ‘greedy’ parent trying to ‘milk’ the
system for whatever she can get. But a closer look reveals that Elizabeth’s mission to obtain
services was fueled by feeling that she was alone, shouldering the full weight of
responsibility for finding and securing services that could impact her son’s future. She felt
she could not even trust professionals to tell her honestly what her son needed. She said:
So now I just ask. I don't care if it sounds stupid. Like I had to buy him a new
car seat and I asked, "Do you guys cover that?" They're [regional center case
manager] like, "No, we don't do that." Okay. But I'm asking cause you're not
telling me, so I'm gonna ask you. As ridiculous as it sounds.
“It became personal for her.” Some parents felt that administrators fought them
not just to save money but on principle, e.g. when parents recognized that school districts
were spending more fighting families than they would if they just granted the service or
classroom placement that parents were asking for. Elizabeth said, “All I’m asking for is
more support for my son…little services. I’m like, ‘It’s much cheaper to give me this than for
me to fight you.’” In these situations, parents felt that administrators were simply exerting
their power, “bullying” because they had “deeper pockets,” and even sending a message to
other parents about the consequences of fighting.
Sofia and Daniel, along with their son Danny’s behavior therapy supervisor, Jesus,
felt that their fight with Deborah Rutgers was an attempt to send a threatening message to
all Latino parents in the district. Sofia said, “It was like a vendetta for her. She was like,
‘That's it…I'm gonna squash you.’” Jesus, who regularly attended IEPs all over Los Angeles
County, told me in an interview that he saw disparities not only in the services that
children in different areas received, but also in how their parents were treated by school
district administrators. He attended Daniel and Sofia’s contentious IEPs and said that it was
one of the worst he had seen: “[The school district] needed to make it clear that they were
going to be ahead no matter what…They don’t wanna set a precedent, so that the
community understands they’re the boss, they’re the gatekeepers.”
These families felt that administrators intended to fight back until parents were too
intimidated and exhausted to continue. This in fact happened for Sofia and Daniel.
Exhausted and dejected from their fight with Deborah Rutgers, they used money they had
been saving from extra jobs that Daniel took on, initially intended to hire a lawyer, and
instead spent it on private preschool for Danny, taking a break from the public school
system. Daniel, a “big football guy,” described the defeat he felt with a story about the
Buffalo Bills. After being beat for the third year in a row at the Super Bowl, “The
coach…quoted some poem, ‘Let me lie here wounded for a while. I'll get up again and fight
later.’ And that's what it felt like.”
“She brought up one of the laws.” Parents described a strategy used by
administrators, which I also observed in several IEP meetings, of using education law as a
‘trump card’ to exert their authority over parents. Under the Individuals with Disabilities
Education Act (IDEA), children have a legal right to the “least restrictive environment,”
which means that children with disabilities must be educated alongside typically
developing children, rather than in separate facilities or classrooms, “to the maximum
extent appropriate” (U.S. Department of Education, 2004c).
The notion of the “least
restrictive environment” was brought up during an IEP meeting that I attended with Nicole,
mother of Rafael Jr. Nicole asked the IEP team, “Do you think [Rafael Jr.] would benefit from
a one-on-one aide?” One-to-one aides are highly desired supports in the school system,
particularly for children with attention difficulties who would benefit from constant adult
assistance and redirection (Kang-Yi, Locke, Marcus, Hadley, & Mandell, 2016). After
Nicole’s question, my fieldnote documents how “charged” the room immediately became:
Everyone’s attention quickly goes to her and this question…Ms. Pierce [the
teacher] says, “No. We have a lot of help and we don’t want more adults…for
him to rely on.” And the principal quickly says, “That’s more restrictive. We
don’t want him in a more restrictive environment.” And Nicole says, "Well, I
just ask because…he's 6, almost 7, and you were saying, he's at like a 2-year
age-range, right?" And Ms. Pierce said, "Well, he's developmentally low, but
another adult won't necessarily make him catch up faster." And everyone's
kind of nodding, everyone else in the room…And the principal says, "Yeah,
and he's not a danger to himself or others." And everyone says,
"No."…Everyone really picked up on their cue to chime in and agree.
During this exchange, Nicole drew upon ‘evidence’ from Rafael Jr.’s recent
assessment, which placed him at a 2-year-old age level for certain developmental skills.
Sofia, the previously mentioned mother and schoolteacher, frequently critiqued the
practice of testing children with autism with measures that were designed for children
The concept of the “least restrictive environment” was mobilized and became accepted during the 1970s as
a result of disability activism and deinstitutionalization (Taylor, 1988).
with “typical” language comprehension and attention skills. Test scores are reported to
parents in age ranges for particular normative skills, which not only fails to capture the
child’s strengths and capacities but is also painful for parents to hear (see Angell &
Solomon, 2014). Nicole adeptly wielded this as ‘evidence’ that the IEP team should consider
whether a one-to-one aide might be appropriate for Rafael Jr., reasoning that if he is so
extremely far behind, he needs extreme supports. Everyone in the room (a teacher,
principal, and three therapists), however, took their cue to agree with the principal’s
argument that that kind of support would be “more restrictive.” The previously mentioned
Los Angeles Times article (Zarembo, 2011) reports that children in wealthier school
districts have one-to-one aides at much higher rates than children in low-income areas,
making this argument about one-to-one assistance as “more restrictive” clearly dubious.
Another more extreme use of a legal term by administrators contesting parents’
perspectives was in the case of Daniel and Sofia. When they and the district could not come
to an agreement about a classroom placement, even after an official mediation session, the
district filed a lawsuit against Daniel and Sofia “for parental rights.” In other words, “They
were telling us we were not giving our child the opportunity to have a free, appropriate – a
FAPE. So they were suing us for that.” Under IDEA, all children with disabilities are entitled
to a “free appropriate public education” (FAPE, U.S. Department of Education, 2006),
defined as “special education and related services designed to meet their unique needs and
prepare them for further education, employment, and independent living” (U.S.
Department of Education, 2004a). To Sofia and Daniel, this meant a classroom with verbal
children so that Danny would have peer models, as their hope for him was to learn to
speak. The school district, however, used the same notion to argue that Danny’s parents, in
refusing the more “severe” classroom setting, were not providing Danny with an
“appropriate” education. Thus, the district was arguing that the legal right to make that
decision for Danny should be taken away from his parents and given to the district. As
Daniel’s previous football quote signified, the family was too “wounded” and defeated to
continue. After sending Danny to private school with the money they had been saving for a
lawyer, a year later they enrolled Danny at a different school district in order to avoid
Deborah Rutgers, a rare opportunity because their neighborhood had been re-zoned.
Kyle, father of Jayden, learned at a parent training offered by the regional center
that in IEP meetings, “We can’t ask for what’s best for our child, we have to ask for what’s
appropriate,” alluding to the child’s legal right to a “free appropriate public education.”
While it is commendable that the regional center provided a training to educate parents
about their children’s legal rights to public education, the situation is one in which parents
face unreasonable hurdles in trying to represent their children in an IEP meeting. Parents
must learn legal terms, phrasing their requests in specific ways using what amounts to a
secret ‘code’; defend what they think is best for their children using these particular legal
terms; and deflect arguments put forth by administrators who wield legal terms to ‘win’ the
argument. While this expands appreciation for the highly specialized skills and knowledge
acquired by parents (Lawlor & Mattingly, 2009, 2014) and provides robust evidence that
defies stereotypes of Latino parents as uninformed and unaware, it uncovers deeply
problematic flaws in the special education system, raising questions about how “free” the
“free appropriate public education” really is.
“If I was just a different ethnicity, would she have treated me the same?”
Contrary to the dominant discourse that middle-class, White ‘autism parents’ get more
services because they ‘wage a small war’ (Zarembo, 2011), the Latino parents in this study
who used similar tactics were not necessarily responded to the way that the article
suggests. Many parents in the study attended parent trainings, consulted with lawyers,
spoke at school board meetings, wrote to administrators, and went to IEP meetings
knowledgeable about their children’s rights, wielding thick binders with their children’s
service-related documents as evidence of this knowledge (see Angell & Solomon, 2014).
A few families who had been fighting finally got the attention of someone higher up
in the school district and were suddenly, seemingly miraculously, granted everything they
had been asking for. After ‘winning’ a fight and getting a new school placement for their son
Tanok, Elizabeth and her husband were fighting to get reimbursed for mileage for driving
him to school because bus services were not offered. She said:
Once my husband e-mailed the assistant superintendent, in 5 minutes, we got
a phone call from the special ed[ucation] director, "We're gonna go ahead
and reimburse you, don't worry. Just come in and sign the addendum." Like
that. After weeks of back and forth calling and e-mailing and-, Why do they
do that?...Why do they play games like that if they're gonna ultimately-? I
guess they wanna see if you'll give in and not challenge them. Cause it's
gonna save them money. And that sucks, cause it's like time and energy
Elizabeth thought that administrators initially assumed that she and her husband were not
a ‘threat’ based on stereotypes about Latinos:
I think, it sounds horrible, but if you see our names on paper, I mean we're
Mexican…But I was like, "I don't care. This is my fight. This is my job. I'm not
gonna back down." And I don't think they were expecting that (laughs.)
Similarly, Fabiana felt as though her concerns weren’t being taken seriously until
her husband, a teacher, sent an email to the special education director. They were then
immediately given everything they had been asking for for months. She said:
Why couldn't you just say yes from the beginning?...We were ready to pay a
lawyer. Why do we have to get lawyers involved? Why do we have to get
advocates involved? Why do we even have to tell the special education
In other cases, parents who came to IEPs ready for a fight felt instead of being taken
seriously, district administrators became more resistant to their requests because the
parents used ‘autism parent’ strategies. Initially, Sofia and Daniel were fighting with
Deborah Rutgers for the chance to visit and observe classrooms other than the one that the
district recommended for Danny. When they were finally able to, Sofia, who had a master’s
degree in education, created an “observation tool” and took data on the number and types
of verbal interactions of children in each classroom. At the IEP, she presented graphs of the
data to Deborah Rutgers. “And her mouth just dropped and her eyes…and that’s when I
realized, ‘This is a personal thing for you.’” This sophisticated strategy, which revealed
Sofia’s specialized knowledge and expertise, did not intimidate Deborah Rutgers or cause
her to respect Sofia. Instead, Sofia said that Deborah Rutgers continued to treat her as
uninformed and inferior:
It’s like a shark versus a fish. You have no chance. And even though they-, I'm
an educated person, and I’m very knowledgeable of what [the] least
restrictive environment is and I knew all the lingo, she still spoke to me as if I
was an idiot! Like I didn't know what I was talking about. Like I had no idea!
If I went in there and I was just a different ethnicity, would she have treated
me the same? If I was a White woman, fighting for my children, with all the
credentials that I have, would you still have treated me the same? Would you
have spoken to me the same way? And blocked me from the services that I
II. “Why Do I Have to Fight the School District Like That?”
Most of the families in the study did not want to be “difficult” parents or “take it that
far” (e.g., hire lawyers). Of these families, I witnessed two reluctantly begin fighting during
data collection after an upsetting event (e.g, they felt their child was not receiving adequate
attention or was unsafe).
“We wanna keep this as amicable as possible.” Initially, Sabine and Kyle, parents
of Jayden, tried to develop a “friendship” with therapists who worked with Jayden because
they felt that a “wall of professionalism” hindered communication. They eventually became
frustrated, however, with a school speech therapist who was “very nice” but used “super
old school” therapy techniques. They felt that “there was absolutely no progress” in
Jayden’s speech with her, and that she was not putting forth her best effort with him. They
turned to a trusted former speech therapist of Jayden’s for advice. She said, “They’ve been
working with him for over a year, he should have some [words].” This prompted Kyle and
Sabine to question the school speech therapist’s techniques:
We were able to press her a little bit more during the IEPs, and of course,
that's kind of when we were very disappointed in her philosophy. Yeah, she
was just like, "Well this works for…99% of my children." Well, you know, this
is special needs, you know, you're crazy! (laughs)…And then of course, you
know, we wanted to fight that, but at the same time these are the people that
spend an awful lot of time with our child, do we really wanna make enemies
within a district? And went like, "Well, no," and then that's when we found
out that she was retiring this year and it's like, okay so we just have to wait
her out then. So that was kind of the course of action we took. God, can you
just imagine having to wait out an educator? It's the hardest thing (sighs).
“They don’t like when you challenge them, I guess.” Many of the families felt that
despite their best efforts to make professionals feel that they understood or supported
them, the amicable tone inevitably changed when parents questioned professionals’
decisions or made a request, such as for an assessment or services for their children.
Kyle, frustrated that the school speech therapist did not take an individualized
approach to Jayden’s therapy, made a spur-of-the-moment decision in an IEP meeting to
ask for an Augmentative and Alternative Communication (AAC) assessment, which would
determine whether Jayden would benefit from a device like an iPad to help him to
communicate. Just as Nicole used her son Rafael Jr.’s test score age-range to ask about a
one-to-one aide, Kyle used the speech therapist’s bleak reporting of Jayden’s capacity for
speech to ask the district to test Jayden for an AAC device (which, depending on the results,
could be expensive). Kyle said:
And so when the conversation started going towards speech, [the speech
therapist] was already telling us, “Well, he can't do this and he can't do that,"
you know, "I've worked with him this way and I've worked with him that
way.”... Right then was when I said, "Can we have an AAC assessment?"…And
by that point she had already kind of ruined her case, like she couldn't say no.
And it wasn't planned, it just kinda happened that way…And the face on the
[special education] director kinda changed a bit. You know, it started out
smiles, then it was almost kinda like we defeated them. And we weren't
really trying to get anything out of them, we were just trying to find out what
would work best…So it kind of made it funky, but I think the main thing for
us was to (sighs), to come to the realization that these people spend…an
awful lot of time with our child. So we wanna keep this as amicable as
possible. We wanna make sure that, you know, they understand that we
support what they're doing. So we really didn't try to beat it in, although we-,
I know I would have liked to.
When they disagreed with professionals, parents tried to deliver their opinion while
assuaging professionals’ egos. When Fabiana disagreed with the school district that her son
Mateo Jr.’s autism diagnosis should be taken away, she tempered her own expertise as his
mother with an acknowledgement of the professionals’ expertise: “I respect, I appreciate all
you guys have done and your views, especially because you’re the psychologist, you’re the
speech path[ologist] and all this other stuff. But I know what I know for my kids.” Despite
these efforts to avoid appearing demanding or defiant, families felt that if they made any
requests for services or asked questions, professionals treated them as if they had taken an
“It scares me to think that they are hitting him and I don’t know.” Kyle’s story
about asking for the AAC assessment conveys the dilemma that parents faced. Almost all of
the families in the study, whether they decided to fight or not, expressed fears about
whether professionals might mistreat their children, most of whom had communicative
challenges and could not report mistreatment to their parents. Sabine said:
It is scary, especially with Jayden. He doesn't speak. So if we like come over
and become the mean parents, well, not that they wanna be mean to Jayden,
but they might just treat him differently because, "Oh, he's the kid with the
Nicole, mother of Rafael Jr., reflected on an IEP that I attended with her. Initially, she
had planned to tell the teacher during the meeting that she felt that the teacher treated
Nicole’s husband disrespectfully when he dropped Rafael Jr. off at school every morning,
but Nicole changed her mind. She explained:
So I did want to tell [the teacher] that, but there's a line, because she has my
child for 7 hours out of the day. I don't want her to be taking it out on him. I
mean, I don't think she's like that, but then again you can never trust anybody
with your kids. You can't. Because especially someone like him, he can't talk,
he can't tell me, "Oh, they were mean to me.”
III. “Be Mean, But Kiss Butt. Here’s Our Battle Plan.”
Many parents described using a “good cop bad cop” strategy during meetings to
maintain the delicate balance between being firm enough to be taken seriously but
congenial enough that professionals ‘liked’ them. Sabine and Kyle carried out complex
intersubjective work during IEPs to calibrate the overall impression they gave off as a
couple, using an almost choreographed back-and-forth, based on a moment-to-moment
reading each other’s behavior and the overall tone of the meeting:
Sabine: Kyle and I work really well as far as good cop, bad cop. (Kyle
laughs.) So we work really well and it's-
AMA: Who's which?
Kyle: It just depends.
Sabine: I think we just catch on, and we switch (laughs.)…I could be a
Kyle: Mid conversation we'll switch.
Sabine: And then all of a sudden, Kyle's like, (diplomatic tone) "Okay,
well no, what she meant is this, (as if trying to calm Sabine)
sweetheart, sweetheart, sweetheart!" (Kyle and AMA laugh.)
And then he goes ahead and explains my rage.
“They're looking at you as an emotional parent.” Some parents also had strategies
in case they became too “emotional” in IEPs (Sousa, 2015). Nicole described the way her
husband, Rafael Sr., did this for her:
If he feels that I'm getting emotional, or I'm getting rattled, or I'm gonna snap,
he'll take over for me…I've actually gotten into arguments with [therapy]
supervisors before and he has to step in like, "You know what, go outside. I
got this because they're no longer respecting you. They're…looking at you as
an emotional parent who was just letting her drama come out, so let me
Although it might be assumed that professionals are more ‘neutral’ and parents
more ‘emotional’ (Sousa, 2015), the parents in the study often had to manage professionals’
emotions, particularly defensiveness and anger if professionals felt their authority was
being questioned. After Sabine and Kyle’s son Jayden was ‘lost’ on a school bus for about an
hour (see Manuscript 3), they consulted with an education lawyer, who told them how to
manage administrators’ potential defensiveness:
They’re gonna feel as if you’re trying to attack them. Every time that you talk
to them, just keep reminding them that you are the parent of a special needs
kids, that you are a parent of a boy with autism, that your son is nonverbal,
just keep reminding them that…you're not here trying to fight them, you're
just trying to make things better for your son.
Often, however, issues that arose during IEPs were inherently and deeply
‘emotional,’ as they involved children’s development, progress, and hoped-for futures
(Lilley, 2011b; Sousa, 2015). When administrators seemed to be keeping a ‘professional
distance,’ parents felt that their perspectives and emotions were not acknowledged. After
Fabiana’s son Mateo Jr. was ‘lost’ on the school bus (see Manuscript 3), the school district
professionals’ lack of acknowledgement of her experience as a mother contributed to the
development of a fight:
This quote is Sabine’s retelling to me what the education lawyer said to her.
I don't think they took responsibility ever. Ever. She [the school district
autism specialist] may say sorry, but I don't think she's ever really been
sincere about, "You know what, we messed up and I am sorry about that."
Had I gotten a sincere apology, maybe the outcome would've been different.
This article problematizes the tacit normativity of the processes that cause parents of
children with autism to feel that they have to fight to obtain services. The parents in the
study had to ‘prove’ that their children were ‘service-worthy’ (Hansen, Bourgois, &
Drucker, 2014; Marvasti, 2002), paradoxically by taking an adversarial stance against
systems of care.
I have shown how the ‘autism parent’ discourse emerges from the experiences and
resources of White, middle- and upper-class families, intersecting with “intensive
mothering” (Hays, 1996) and “concerted cultivation” (Lareau, 2011) paradigms to produce
the “warrior hero” parent (Sousa, 2011) who battles professionals and bureaucracies. Sofia,
mother of Danny, looked to books and the Internet to learn what the parents of “successful”
individuals with autism (e.g., those who went to college and lived independently) did to
support them. Everywhere she looked, Sofia saw the mandate that a ‘good’ ‘autism parent’
invests limitless time, energy, and resources in their child’s development:
It's all the same. It's a pattern. Parents are very involved. It doesn't
necessarily have to be two parents, but it helps when it's two. One parent
needs to be completely involved. And not just involved with therapy but
hands-on therapy, and the therapy needs to extend all day long.
In this “research” on ‘autism parents,’ however, Sofia noticed the complete absence of
Latino families’ stories:
I read these books and research and all these things about children who
made it who have autism, and they're Caucasian parents. Most of these kids
are Caucasian. I rarely see Latino autistic kids making it, or succeeding. And
I'm like, "That's bizarre!"
Despite this lack of Latino stories and the dominant discourse about Latino parents as
uninformed or passive, some of the Latino parents in the study proudly embraced being an
‘autism parent.’ Elizabeth told me with both exhaustion and pride in her voice that her son
Tanok had 11 therapy appointments every week. But the idea that this is the single way to
be a ‘good’ parent of a child with autism obscures values and priorities by which families in
the study were also guided. Parents’ narratives conveyed the multiple, complex, and varied
values which influenced their parenting decisions, which were not mutually exclusive but
overlapped and shifted over time (Lawlor & Mattingly, 2014).
I have shown how some parents opted for amicable relationships with providers
because they feared that their children would be mistreated, but they valued amicable
relationships with professionals for other reasons, too. Some parents felt it fostered open
communication, making their children’s therapy program more effective. Parents who
worked in the education system sympathized with teachers and did not want to make
things “difficult” for them. These diverse experiences reveal that whether and how families
fought, they were faced with a task that is arguably more difficult than the work of fighting
alone: In order to get services for their children, parents had to fight while making it seem
as though they were not fighting.
When systems of care only award services to aggressive, adversarial parents, the
situation risks causing parents to try to fight for anything they can get. It sets up an
environment of distrust and suspicion, creating a litigious, adversarial arrangement that is
contrary to what both sides would likely prefer. The parents in the study not only wished
for a more collaborative method of obtaining services for their children, they also
expressed the extremely consequential, high stakes for them in their “battles” with systems
of care. Daniel, father of Danny, articulated these stakes to me. As if speaking to the school
district administrator who had “blocked” his efforts to place his son in a kindergarten
classroom with ‘verbal’ peers, Daniel said:
You'll be done with him in a few years…You wipe your hands of him. We have
to live with any decisions we make for him. He's with us for the rest of his
life. So I don't understand why you don't let us have what we want for him,
because we have to pay the price if we make the wrong choice.
School Bus Stories:
Understanding Latino Parents’ Concerns about the Safety and Independence of their
Children with Autism Spectrum Disorder
This 12-month urban ethnographic study examines the experiences of 12 bilingual Latino
families of children with autism living in Los Angeles County. Analysis utilizes narrative
phenomenology (Mattingly, 2010) to explore Latino parents’ experiences related to their
children’s school bus transportation. In two unrelated incidents from the data corpus,
children were ‘lost’ while under the care of the public school district transportation
department. The two incidents are presented as “theoretically crucial cases” (Blatter, 2008)
because they represent two themes from the broader data corpus: 1) The cost of broken
trust between Latino parents and school district staff when the parents felt that their
children were placed in unsafe situations by these professionals, and 2) The tension the
parents experienced between the desires for their children’s independence and safety. The
bus stories provide a point of entry into a contested discursive terrain where seemingly
conflicting priorities of safety and independence, differently understood by the parents and
school district officials, become arguments for or against specific services and supports that
parents ask school districts to provide for their children. I situate professionals’ emphasis
on children’s ‘independence’ within a broader historic, sociocultural, and political
economic context. This paper calls for a reconceptualization of ‘mobility’ for individuals
with autism and their families, addressing the critical and urgent need to support their
independence and safety while taking school district or public transportation, to facilitate
their community participation.
School buses are the safest way for children to travel to school in terms of the
likelihood of an automobile accident (National Highway Traffic Safety Administration &
American School Bus Council, 2009). The safety of children with autism spectrum disorder
(ASD, autism from here on, American Psychiatric Association, 2013) on school buses,
however, is called into question based on a number of recent news media stories. In these
news reports, children with autism were dropped at the wrong stop with no one to meet
them; faced verbal, physical, or sexual abuse by other students, bus drivers, or aides; were
overlooked and left behind on empty buses in extreme heat or cold; and even died while on
the school bus (see Table 2 at the end of this manuscript).
This ethnographic study
examines the experiences of Latino parents of children with autism living in Los Angeles
County, for whom the issue of their children’s safety while on school buses is an everyday
concern. The analysis utilizes narrative phenomenology (Mattingly, 2010) to explore Latino
parents’ experiences and concerns related to school bus transportation. The analytic focus
highlights parents’ hopes and concerns about their children’s futures, especially related to
whether, as adults, they will be able to participate as independent and autonomous
members of their communities. In line with a ‘new mobilities paradigm’ in the social
sciences (Sheller & Urry, 2006), I argue for a reconceptualization of mobility for individuals
with autism that considers the perspectives of individuals with autism and their families,
the significance of mobility for social relations, and the critical need to support both the
independence and safety of individuals with autism, in order to facilitate their community
participation (Hammel et al., 2008; Hammel, Magasi, Heinemann, et al., 2015).
Analysis focuses on two unrelated incidents from the data corpus in which a child in
the study was ‘lost’ (i.e., unaccounted for) while under the care of their school district
transportation department. The two cases were chosen as “theoretically crucial cases”
(Blatter, 2008, p. 3) because they illuminate two themes from the broader data corpus: 1)
The cost of broken trust between Latino parents and school district personnel when the
parents feel that their children were placed in unsafe situations by these professionals, and
2) The tension among ratified institutional discourses of promoting the independence of
children with autism, while also ensuring their safety. Analysis will show that this tension
was constituted by the school district personnel’s emphasis on the ‘need’ for the child to be
independent, an ideology which I critically examine to show how it is shaped by the
sociocultural, political, and economic context. School staff marshaled the notion of
independence to argue against the provision of supports requested by parents, e.g., a bus
assistant to ensure the child’s safety. When the dominant discourse of child independence
is used in this way, parents are caught between wanting to support their child’s
independence and be seen as a ‘good parent’ (Angell & Solomon, 2014; Solomon & Lawlor,
2013), and wanting to ensure the safety of their child traveling by school bus without their
Autism and “The Transport Situation”
Despite the fact that transportation to school, work, healthcare appointments, and
social activities is a daily necessity for most individuals with autism, there is little empirical
research on “the transport situation” (T. Falkmer, Fulland, & Gregersen, 2001, p. 90) for
individuals with autism and their families. This lack of empirical research is juxtaposed
against a growing number of news reports of children and young adults with autism being
lost, harmed, abused, or even dying while taking transportation (see Table 2), which makes
this an urgent public health, human services, and public policy issue.
Much of the literature on the ‘transport mobility’ of individuals with autism and
other developmental disabilities comes from occupational therapy, a profession with a long
history of engagement in community mobility: “Transport from one location to another
enables participation in the things we want and need to do (occupations)” (Schold-Davis,
2012, para. 1). Occupational therapists can provide “community mobility training,” or
“travel training,” which is instruction in the use of transportation systems (e.g., McInerney
& McInerney, 1991; Precin, Otto, Popalzai, & Samuel, 2012). Small-scale instruction
programs are also documented by researchers in disciplines such as behavioral
intervention (Luiselli, 1978), education (Mechling & O’Brien, 2010), and computer
engineering (Bernardes, Barros, Simoes, & Castelo-Branco, 2015).
Safe transportation for people with autism of all ages is a concern for parents and
caregivers globally. Occupational therapist and researcher Torbjörn Falkmer and his
colleagues conducted several large-scale survey studies to identify the concerns that
Swedish parents of children with autism had related to their children’s school
transportation. They found that Swedish parents of children with autism were more
worried than parents of children with other disabilities about their children taking school
transportation (T. Falkmer & Gregersen, 2002). Parents of children with autism were more
worried about their children’s safety on school transportation vehicles compared to in
families’ personal vehicles, and parents of younger children were more worried than
parents of older children (T. Falkmer, Anund, Sörensen, & Falkmer, 2004). Swedish parents
of children with autism were worried that school transportation drivers had inadequate
knowledge of their child’s disability and would be unaware of how to approach and
communicate with their child. This was particularly problematic because the children often
rode in vehicles with unfamiliar drivers rather than having one consistent driver.
There is little research on how individuals with autism themselves experiences
transportation (T. Falkmer et al., 2001; Risser, Lexell, Bell, Iwarsson, & Ståhl, 2015). An
Australian study compared the public transportation experiences of adults with autism to
neurotypical adults (M. Falkmer et al., 2015). While the two groups had similar views on
transportation, for individuals with autism, being able to transport oneself without the use
of a car was particularly important because it promoted independent community mobility.
Individuals with autism in the study found timetables and train line maps easy to
understand but reported that they sometimes felt uncomfortable or anxious when vehicles
were crowded or services ran late.
There is also very little known about the challenges and experiences of the people
tasked with transporting individuals with autism and other disabilities in school
transportation vehicles. In a U.S. survey on this topic, school and transportation
administrators reported that the top problems faced by transporters of children with
disabilities were the children’s emotional or behavioral problems (51%), children being
resistant to safety restraints (32%), and needing additional personnel to assist the drivers
(31%) (Stout-Everly et al., 1994). In another U.S. study, occupational therapists with
specialized training and certification as child passenger safety technicians conducted
observational evaluations of the transportation practices of caregivers who transported
children with autism (Yonkman, Lawler, Talty, O’Neil, & Bull, 2013). They found that 74%
of children with autism escaped their safety restraints, and 21% of parents reported that
children demonstrated aggressive, self-injurious, or disruptive behavior during travel,
findings which indicate that the safety of the children, their caregivers, and other
passengers might be at risk.
In another U.S. study, Feeley and colleagues (2015) conducted interviews in New
Jersey with 25 stakeholders; carried out surveys with 703 adults with autism and their
family members; and held six focus groups, four with adults with autism and two with their
parents. Participants emphasized the crucial role of transportation in the lives of adults
with autism in linking them to meaningful opportunities and activities in their
communities, including employment, education, healthcare, and social activities.
Individuals with autism and their caregivers reported many travel-related concerns and
challenges, and few of those with autism received travel training in public school. Although
the Individuals with Disabilities Education Act (IDEA, U.S. Department of Education, 2004a)
mandates the provision of transportation to and from schools, and the IDEA website notes
that Individualized Education Program
(IEP) teams “should consider” travel training as
part of a child’s postsecondary transition plan (U.S. Department of Education, 2009), the
provision of such training is not required, and the participants in Feeley’s (2015) study
reported that such training was “minimal to nonexistent” (2015, p. 10).
The Individualized Education Program (IEP) is a document tailored for each special education student in
the U.S. public school system that details their specialized education program, including their current levels of
performance, goals, services, and supports. Every child in special education has a legal right to have an IEP,
per the Individuals with Disabilities Education Act (IDEA; U.S. Department of Education, 2004a).
(Re)conceptualizing Mobility and Participation for Individuals with Autism
In the United States, the Americans with Disabilities Act (ADA, U.S. Department of
Justice, 2009) mandates that public transportation systems make facilities accessible to
individuals with disabilities. ‘Accessibility’ that promotes the mobility of individuals with
disabilities is frequently conceived of as physical or mechanical adaptations to the built
environment that aide individuals with physical disabilities to enter, exit, and ride safely in
vehicles, such as wheelchair lifts on buses. For individuals with autism, however, there is a
need for mobility and accessibility to be conceptualized more broadly, inclusive of
strategies, approaches, and adaptations that can be used by drivers and other professionals
that are based on specific and accurate information about autism (T. Falkmer et al., 2004).
According to sociologists Mimi Sheller and John Urry (2006), a ‘new mobilities’
paradigm is emerging in the social sciences that is reconceptualizing the concept of
mobility, situating it within an interconnected world in which people, products, images,
ideas, and information are always ‘on the move,’ flowing through not only physical but also
social, psychological, and virtual spaces (Sheller, 2014). This new transdisciplinary field
brings together social, spatial, and critical theory to study
some of the more purely ‘social’ concerns of sociology (inequality, power,
hierarchies) with the ‘spatial’ concerns of geography (territory, borders,
scale) and the ‘cultural’ concerns of anthropology or communication
research (discourses, representations, schemas), while inflecting each with a
relational ontology of the co-constitution of subjects, spaces, and meanings”
(Sheller, 2014, p. 3).
In a similar vein, in this analysis I consider mobility in the context of autism as not
only a physical capacity for movement through space but also as involving “the spatialities
of social life” (Sheller & Urry, 2006, p. 208), such as the social significance of mobility for
children with autism and their families; inequality and disparities in access to
transportation-related services and supports; and “mobility justice” (Sheller, 2014, p. 2), or
how mobility vis-à-vis both the built environment and sociocultural context influence
participation (Hammel et al., 2008; Hammel, Magasi, Heinemann, et al., 2015).
Within this new and expanded analytic framework, and grounded in the
particularities of the experiences of the Latino families in the study, I consider the
potentialities and challenges of travel for children with autism, including “the proliferation
of places, technologies, and ‘gates’ that enhance the mobilities of some while reinforcing
the immobilities of others” (Sheller & Urry, 2006, p. 213). Moving throughout the
neighborhood, community, and broader world holds the potential for children with autism
to participate in social life and to have an opportunity to develop greater independence
(Hammel et al., 2008; Hammel, Magasi, Heinemann, et al., 2015). However, travel can also
involve great risks for children with autism, whose communicative, behavioral, and sensory
processing differences may make them especially vulnerable to certain dangers (see Table
The work of disability studies scholars has made clear the link between mobility and
participation for individuals with disabilities (Hammel et al., 2008; Hammel, Magasi,
Heinemann, et al., 2015). Twenty-five years after the enactment of the Americans with
Disabilities Act (ADA; U.S. Department of Justice, 2009), individuals with disabilities still
experience significant disparities in community participation, including transportation
access (Hammel, Magasi, Mirza, et al., 2015; Kessler Foundation & National Organization on
Disability, 2010). In a recent multi-site study of five different regions of the U.S. by
occupational therapist and researcher Joy Hammel and colleagues (2015), adults with
disabilities such as stroke, spinal cord injury, and traumatic brain injury described
‘participation’ as influenced by various barriers and supports afforded by the environment.
This included not only the built environment but also the natural, social, economic,
transportation, and technology environments. In order to understand the affordances and
constraints experienced by individuals with autism in relation to their mobility and
participation, research is needed that begins from the perspectives of individuals with
autism and their families and caregivers, drawing upon their experiences, ideas, and
expertise to collaboratively imagine new forms of environmental adaptations and
Disability, Dependency, and Independence
Disability theorists, practitioners, and activists have long argued that disability is a
social construction rather than an objective, rationally determined, fixed and absolute
category (Goodley, 2011; Oliver, 1989). Central to arguments about the nature of disability
is the notion of dependency. Although cultural practices and beliefs shape dependency,
“given the immutable facts of human development, disease, and decline, no culture that
endures beyond one generation can be secure against the claims of human dependency”
(Kittay, 1999, p. 1). Critical disability scholarship problematizes definitions of disability
that are rooted in positivistic, etiological perspectives, such as the biomedical model of
disability, which defines disability as “a problem of the person, directly caused by disease,
trauma or other health condition” (World Health Organization, 2001, p. 20). Implicit in this
view of disability is the assumption that ‘normative,’ non-disabled individuals are “mature
independent practical reasoners whose social relationships are the relationships of the
adult world” (MacIntyre, 1999, p. 81). Philosopher Alasdair MacIntyre (1999) argues that
this assumption, which is rooted in ‘western moral philosophy,’ fails to account for human
vulnerability and dependency. Feminist philosopher Eva Feder Kittay (1998b, 1999)
emphasizes dependency, and mutual interdependence, as an essential part of the human
condition. Dependency relationships, such as “the intimate bonds of dependents and their
caretakers[,] make civic order and civic friendship possible” (Kittay, 1998b, p. 129).
Similarly, a shift in the 1980s in psychology and anthropology theory and research
moved away from the traditional dichotomous view of cultural groups as oriented toward
either independence or interdependence (Raeff, 2006). This was an effort to move away
from research and theory that resulted in characterizing cultures in stereotypical terms.
Echoing the work of feminist philosophers, this line of scholarship acknowledges that
people of all cultures encounter and experience both independence and interdependence,
as the human experience inherently involves both separateness and connectedness.
These shifts in theoretical and empirical approaches are best understood as a
response to a persistent, if not increasing, cultural, political, and economic discourse of
‘independence’ in U.S. culture. The cultural primacy of independence has been linked to a
number of influences, including the Renaissance, Puritanism, imperialism, the ethos of the
century Western frontier, modernity, and patriarchy (Goodley, 2011; Kitayama,
Conway, Pietromonaco, Park, & Plaut, 2010; Howe, 1988). Independence achieved even
more cultural value when it became associated with economic gain during the Industrial
Era (Oliver, 1989). Just as work is central to industrialized societies, those who are
economically unproductive become economically and socially dependent. In the 1980s, a
major economic shift in the global political economy, labeled neo-conservatism or
neoliberalism, brought about widespread privatization, deregulation, and the defunding of
social services (Harvey, 2005). This was a marked shift away from the capitalism of the
Welfare State Era (1945-1970). Under this new regime, dependency is not only
undesirable, it is pathologized; U.S. welfare reform sought to ‘reform’ the ‘self-reliance’ of
individuals created by the ‘nanny state’ (Oliver, 1989; see also Hancock, 2004; Hays, 2003).
Peacock and colleagues (2014) argue that in ‘more neoliberal countries,’ that is,
countries whose economic policies align more closely with neoliberalism, there is a
pervasive, internalized discourse that Peacock and colleagues call “no legitimate
dependency.” In their qualitative study of social comparison with women in England, this
discourse permeated women’s narratives:
Almost everything about participants’ lives were deemed to be the
responsibility of the individual, who alone should be able to manage
whatever was happening to them and where turning to others, or even
acknowledging the need for help, was seen as weak and unacceptable
(Peacock et al., 2014, p. 176).
Latino Parents’ Presentations of Self vis-à-vis Cultural Assumptions
In the presence of school professionals’ use of a discourse of independence, the
parents in this study worked to present themselves as ‘good parents’ (Angell & Solomon,
2014; Solomon & Lawlor, 2013). Arguably, all parents face this task when engaging with
professionals regarding their children, but for Latino families, there is an added possibility
that professionals may hold tacit assumptions about a stereotypical ‘Latino culture.’ As
recent critical scholarship has pointed out, both healthcare and education professionals are
often taught ‘cultural competence’ curriculum which has too often conceptualized ‘culture’
as an essentialized category, using static descriptors for one monolithic ‘Hispanic culture’
(Carpenter-Song, Schwallie, & Longhofer, 2007; Orellana & Bowman, 2003).
Teachers, administrators, and therapists may hold certain implicit or unintentional
assumptions about Latino families. In public schools in the United States, individuals from
diverse cultural, ethnic, racial, class, gender, and linguistic backgrounds come together,
creating the potential for misunderstandings or miscommunication between school
professionals and parents, because each person brings to their encounters with others
different culturally-influenced ways of seeing, reasoning, and understanding (e.g., Lawlor &
Mattingly, 2009, 2014). Professionals may assume that Latino families share the same
values such as familismo (valuing family ties), personalismo (valuing interpersonal, caring
relationships over informal or impersonal ones), confianza (the importance of trust in
relationships), and respeto (respect, particularly for elders) (Blanche et al., 2015;
Halgunseth, Ispa, & Rudy, 2006; Harwood, Leyendecker, Carlson, Asencio, & Miller, 2002;
Zea, Quezada, & Belgrave, 1994). These concepts have been used to label cultural practices
that differ from ‘normative’ practices as problems or deficits (Garcia Coll & Pachter, 2002;
Harwood et al., 2002). For example, these concepts can lead to the assumption that Latino
families are unquestioning of authority and will not disagree with school professionals or
‘fight’ to get services for their children (see Manuscript 2). Similarly, the assumption that
Latino families value interdependence over independence, when interpreted as a ‘risk
factor’ rather than a strength, could result in viewing Latino parents as possessing high
levels of parental “control” or being overprotective, overbearing, or stifling their children’s
growth (Halgunseth et al., 2006; Zea et al., 1994).
To understand how culture may influence behavior, it “must be located in relation to
particular sets of experiences, grounded in practice, and situated in relationships within a
complex social world” (Orellana & Bowman, 2003, p. 28). As Garcia Coll and Pachter (2002)
argue, differences in ‘dominant’ cultural parenting practices and those of racial or ethnic
minority groups are not only a matter of cultural, racial, or socioeconomic differences, they
are also “a function of the portrayal of these differences as deficits and the real
consequences for these families in terms of opportunities, resources, and rewards” (2002,
This 12-month, urban ethnographic study examined the experiences of bilingual Latino
families of children with autism living in Los Angeles County. Ethnographic methodology is
commonly used to study the taken-for-granted aspects of the social world through the
study of culture, language, and action, while urban ethnography captures the daily life
issues facing a particular group of people living in modern urban settings (Patton, 2014).
Ethnographic methodology consists of narrative interviews, observations in naturalistic
settings, and review of cultural ‘artifacts,’ triangulating multiple data sources and data
collection methods such that analysis is an ongoing, iterative process. The emergent nature
of naturalistic inquiry allows researchers to explore the phenomenon of interest as it
naturally unfolds. This flexibility allows researchers to follow issues that emerge as
relevant for the participants themselves. As Hollan writes:
Because the flow of experience is contested, indeterminate, and emergent,
we must follow our subjects through time and space, and across different
cultural domains, and in so doing, discover what is at stake for them in the
course of their daily lives (Hollan, 2001, p. 55).
Recruitment and Consent
The University of Southern California Health Sciences Institutional Review Board and
the clinical site gave ethical approval for the study (#HS-13-00589). The clinical site was a
California regional center that serves a large number of Latino families (53.8%).
Recruitment was carried out using a strategy that proved successful on a study of the
experiences of African American families of children with autism in Los Angeles County
(Angell & Solomon, 2014; Solomon et al., 2015, 2016; Solomon & Lawlor, 2013). Letters
describing the study were mailed to a random computer-generated list of eligible children’s
addresses that was created by personnel at the study site, who labeled and mailed the
letters so the families’ information was kept from me. Families who were interested in
participating contacted me by phone or email.
To qualify for the study, children had to be 8 years of age or younger at the time of
enrollment and have a documented autism diagnosis by a licensed professional. At least
one parent or caregiver had to be bilingual (English/Spanish)
and self-identify as Latino
or Hispanic. Participants reviewed and signed informed consent. Parents or caregivers who
shared their children’s health records also signed Health Insurance Portability and
The role of language is an important factor in understanding culture, as culture is in part embodied through
language. I recruited bilingual, bicultural families because they are uniquely positioned to provide important
insights about the intersection of culture and families’ experiences of autism, because they straddle two
cultural and linguistic worlds (Soto, 2007).
Accountability Act (HIPAA) forms. Parents gave assent on behalf of the children with
autism in the study, as none of them were able to give written consent. Study personnel
(transcribers) completed standard IRB Human Subjects Protections and HIPAA trainings
and certifications. Pseudonyms were used for all potentially identifiable information. All
data were stored on secure server at the USC Chan Division of Occupational Science and
Participants included 13 children with autism from 12 families who identified as
Latino or Hispanic; 12 mothers; eight fathers; one grandmother; and two professionals (a
therapist and a therapy supervisor). At the time of recruitment, the children with autism
ranged from ages 3 years, 4 months to 8 years, 2 months. The socioeconomic status of
families was not recorded, but most families in the study lived in cities with median annual
household incomes ranging from $30,000 to $60,000, with average household sizes slightly
larger than the Los Angeles County average.
Study Design and Data Collection
Data were collected between May 6, 2014 and May 16, 2015. The study was carried
out in two phases. Phase 1 (3 months) consisted of two audio-recorded narrative
interviews with 12 Latino families (19 parents, one grandmother) of 13 children with
about how they obtained an autism diagnosis and services for their children. After
the first interview, a visual timeline was created of each family’s story. During the second
interview, the timelines were used as a means of member checking, a qualitative research
strategy which allows participants to verify, modify, or correct researchers’ interpretations
One family had two children with autism diagnoses.
(Creswell, 2013). After Phase 1, six of these families were recruited using heterogeneity
sampling (i.e., whose stories represented a range of experiences; Patton, 2014) to continue
to Phase 2. Phase 2 (9 months) consisted of audio-recorded interviews; video-recorded
(when possible) observations in home, community, clinic, and school settings; and record
review of the children’s health records (i.e., medical or educational documents related to
the child’s diagnosis or services; Angell & Solomon, 2014). Fieldnotes were audio-recorded
after every encounter. The data corpus consists of almost 80 hours of audio- and video-
recorded data, which includes 40 interviews, 10 observations, 60 fieldnotes, and 333 health
All data were transcribed verbatim and transcripts were coded using Nvivo 10
software using a narrative coding approach in which stories are kept intact
Solomon, 2014; Lawlor & Mattingly, 2009, 2014; Mattingly, 2010, 2014; Solomon et al.,
2015, 2016; Solomon & Lawlor, 2013). Analysis iteratively moved between shorter
narrative coded segments; broader child and family stories as represented in the visual
timelines; and the broader discursive context.
These analytic methods were applied to the entire data corpus, then used to focus
on two particular ‘bus stories.’ In qualitative research, case studies are selected when they
are able to provide in-depth, nuanced understanding of a phenomenon, called
“theoretically crucial cases” (Blatter, 2008, p. 3). Unlike the ‘hard sciences’ which seek after
predictive theory and universal truths, in social science, which is the study of “human
This approach differs from other qualitative analytic methods, such as grounded theory, in which coding
takes place without a priori theoretical framing in a line-by-line or section-by-section fashion (Reissman,
affairs,” “we have only specific cases and context-dependent knowledge” (Flyvbjerg, 2006,
p. 224). Theoretically crucial cases are purposefully selected for their unique ability to
provide a level of closeness to lived-experience that would not be possible in large-scale
studies. I chose these two ‘bus stories’ as “extreme” or unusual cases (Flyvbjerg, 2006). As
with all qualitative research, “extreme” case studies are not intended to ‘prove’ or predict
anything, or to represent the experience of most people. Rather, they are examples
strategically chosen to facilitate learning and applicability. The ‘bus stories’ were chosen as
an analytic focus because they reflect two themes found in the larger data corpus, the
significance of broken trust and the tension parents experienced between their children’s
independence and safety.
Taking the school bus was the only time that the children in the study traveled
through the community without their families or caregivers. Many parents in the study sent
their children to school on the bus, which was offered as part of children’s IEPs. Sending
their children on the school bus held complex and varied meanings for parents, who spoke
often about their fears and hopes regarding their children’s futures. A concern about the
future was a driving force in the work and “fighting” (see Manuscript 2) that the parents
did, as they hoped to equip their children with experiences and resources to prepare them
to live safe and happy lives. Especially heavy on the parents’ minds were thoughts about
their children’s wellbeing after the parents passed away. Parents recognized that taking the
school bus was an opportunity for their children to learn how to travel throughout the
community independently, without them, which parents linked to children’s future
capabilities as adults.
For a few parents in the study, the school bus also held a certain stigma, marking
their children as disabled or different from other children (Farrugia, 2009; Goffman, 1963;
Lilley, 2012). When Gabriela started school at age 4, her mother Sarah had conflicting
feelings about seeing her daughter get on the “special needs” bus every morning. She was
“very emotional” seeing children on the school bus that looked ‘more disabled’ than
Gabriela, banging on windows or biting or flapping their hands, behavior which
represented a certain kind of ‘disability’ that conflicted with Sarah’s own image of her
Parents were also concerned about the safety of their very young children on the bus
without them. Miriam, mother of Olivia, remembered that when she was initially offered
transportation, she did not want to use it: “I didn’t even want her on a bus, cause she’s only
3 [years-old], you know, so I was like freaking out.” Julia was worried that her son Luke,
who had been born prematurely and at age 5 was still small for his age, would be harmed
by older children on the bus:
He’s very tiny. He’s still the size of a 3-year-old. The kids that are younger
than him are bigger than him…They can knock him down, hurt him, of course
unintentionally, but they can…There’s way older kids, special needs, but
older. And they sit next to him, so that’s scary.
Parents like Miriam and Julia followed the school bus to school for the first few days,
“just to make sure” their children were able to arrive at school safely. Miriam remembered:
I followed the bus for like the first couple days (Miriam and her husband Dan
laugh). (AMA: Did you?) And I would call the teacher, like, “Is she there?”
Like, “Let me know if she’s there!” Um, but I wanted to see like the routine,
and exactly who picks them up, and if they’re right there.
Some parents, like Elizabeth, also considered how sending their children on the bus
meant that they would not be able to see what was happening at school. She said, “I would
drop him off and he would come home on the bus to give him that independence. But I still
wanted to be present, you know, to see what was going on.” Her fears were realized when
one morning, she dropped Tanok off during the preschool class restroom break and was
dismayed to find that a male custodian was helping the children use the restroom.
Elizabeth was furious: “The [teacher assistants] are okay to do that, but this guy, what the
hell was he doing in there? I was pissed.” She and her husband immediately took their
concerns to the school board, and she told other parents who were not able to observe
what was happening at school because their children took the bus both ways. For Elizabeth,
this was evidence that she could not fully trust the school district with her child but needed
to be present regularly to check on his safety.
Finally, parents were concerned about the long duration of bus commutes and delayed
schedules. When Tanok changed schools, his commute was going to be an hour each way.
His mother Elizabeth was concerned because he had a seizure disorder:
By law in California, the courts here found that an hour is reasonable to be on
the bus for commute…If it exceeds an hour, then they look at other options.
But…our son is epileptic. It’s hot these days, heat can trigger seizures. Is
someone gonna be there with him? He’s nonverbal, and then they told
me…he would be dropped off at the end [of the route]. So I’m like, “No way,
I’m not gonna do that to him.”
Working parents had to arrange for someone to meet their child when the bus dropped
them off after school, and if the drop off did not go as planned, the parents had to monitor
the situation while on the job. When the bus was late, it was distressing for parents. This
happened frequently one semester when Olivia’s regular bus driver quit. Miriam, her
mother, described the experience:
Sometimes the bus takes long and then they don’t come…The other day, I
think they were like an hour late. And I’m like, I called the district, I’m like,
“Where’s my daughter? She’s 3 [years-old] and it’s an hour late. I don’t get
what you guys are doing.”…They had like a substitute bus driver, so [they]
had to go two routes. And I’m like, “Well, you guys should let us know.”…And
I’m not even home. So then the babysitter’s like, “So, Olivia’s not here.” She
called me like an hour later, I was like, “What do you mean?” So I was like,
When Children are ‘Lost’ on the School Bus
During data collection for this study, there were two unrelated instances of children
being ‘lost’ while on the school bus, both of which happened during the first week of school
in August 2014, in different school districts, when both children were attending a new
school for kindergarten. I highlight these two cases to present in-depth accounts of parents’
experiences. These two cases were chosen for the way they represent two themes from the
larger data corpus: The significance of broken trust and the tension parents experienced
between their children’s independence and safety.
Jayden’s story: The significance of broken trust. Jayden, a minimally-verbal 5-
year-old with autism, was starting kindergarten at a new school. He had taken the bus the
previous two years while in preschool. Jayden’s parents, Sabine and Kyle, both worked full-
time, so Jayden’s grandmother waited with him in the mornings to help him get on the bus,
and picked him up in the afternoons where the bus dropped him off at his house.
On the third day back to school that August, Jayden and his grandmother were late
and missed the bus, so Sabine’s sister dropped Jayden off at school. That afternoon,
Jayden’s grandmother was there early to wait for him, but the bus was not there when it
was supposed to arrive at 2:28. She called Sabine, who was at work, and Sabine told her to
give it a few more minutes. Sabine called the school and they said that it was the first week
of school, so the driver was probably just behind schedule. At 2:45, Sabine’s mother called
her again, saying, “Mija,
where’s the bus? I’m getting worried.”
Sabine then called the
school district transportation department and asked where Jayden was. She overheard the
dispatcher contacting the bus driver and heard the response: “No Jayden on the bus.” Kyle,
who got off work at 2:30, immediately headed to the school.
Sabine, very concerned, called the school again and spoke to the principal, who told
her that they “for sure put him in the bus” after school. Sabine told her, "The bus is telling
me otherwise. I’m at work. Please understand that I'm freaking out right now. What's going
on?” The office staff contacted Jayden’s teacher, who confirmed that she not only put
Jayden on the bus but also told the bus driver, “This is Jayden.” Sabine drove to the school
and burst into tears when she arrived at the main office, exclaiming, “Where is my son?
Spanish for “my daughter”
The bus stories were audio-recorded as narrated to me by the children’s parents. Unless otherwise
indicated as taken from my fieldnotes (e.g., in parts of Mateo Jr.’s bus story), all quoted material, including
statements made by other people, are quoted as narrated to me by the parents and thus constitutes their
memory, potentially a paraphrase, of what those individuals said.
What’s going on? I need to know where my son is. You guys can't do this to me.” Recounting
the story later to me, Kyle, who had been standing in the office for some time, said, “I
couldn't even speak because I was afraid I was just gonna start bawling. Because I was so
angry and scared for my son.”
Finally, as the principal was on the phone with the transportation department, they
received the news that Jayden had been found, an hour after he was supposed to have
arrived at home. The transportation department said that Jayden had been hiding on the
bus, a “red flag” to Kyle and Sabine because they knew that Jayden did not “have a concept
of hiding.” Kyle wanted to go pick Jayden up, but the transportation department would not
tell him where Jayden was. Instead, Jayden was sent on a van to the school. In the
meantime, Sabine took the phone from the principal and said to the transportation
director, “You guys lost my son, what happened?” He responded, “I don’t know what
happened. I’ll review it and give you a call back.” Sabine was shocked that he was so
cavalier. She thought, “Say something that'll be like, ‘Don't worry, ma'am, we'll take care of
this and we're so sorry about this,’ and whatever it is, just say something to make me feel
better!” Before they left the school, Sabine turned to the principal and staff and said,
through tears, “I trust you guys with my son daily. I need to know that he's safe. And I'm not
feeling that right now.”
The family went home on that “awful Friday” and examined Jayden’s entire body “just
to make sure he’s okay. That was awful….It was just an awful feeling.” Sabine’s sister and
mom called; “everybody’s crying and…my mom [was saying], ‘How about if he would’ve
stayed in that bus the entire weekend!’” Sabine and Kyle began to try to figure out what
happened during the hour that Jayden was unaccounted for. Kyle said:
We don't know where the bus is, it's a sub[stitute] bus, meaning we have no
idea who the bus driver is…Did they take the bus back to the lot? Was he left
in the bus? Was it, you know, is this guy a complete freaky pervert? Like we
don't know any of this. And by that point, we had decided that we wanted to,
uh, request the tape.
Kyle and Sabine asked the director of transportation to see the video from the fixed
camera at the front of the bus. They were told that they could not see it because
disciplinary action was being taken against the driver, and showing them the tape would
make it public record. Sabine told the director:
You have to understand, I am the mother of a child who is nonverbal, autistic.
I can't trust anyone. The only person I trust is my husband. My husband and
I, we are the ones that take care of Jayden and I'm sorry, you can tell me this
entire time that nothing happened to him in the bus, but we don't know that.
How can I trust this man if he lied to us saying that [Jayden] wasn't even in
Sabine called an “emergency IEP.”
She and Kyle, who had until then made it a point to
be amicable and cooperative (see Manuscript 2), ‘put their game face on’ for this IEP. The
principal, who had viewed the video, gave them a “full description” of what the video
showed, moment by moment: The teacher escorted Jayden to his usual seat and introduced
Parents of children with special education services can submit a written request for an IEP meeting at any
time. In California, if parents request an IEP meeting for any issue that does not require that the child be
assessed, the meeting must be held within 30 days of the request, not counting days between regular school
sessions or holidays in excess of five school days (California Department of Education, 1980, Sec. 56343.5).
Parents sometimes refer to this as an “emergency IEP” when it is called for an urgent issue.
him to the driver: “This is Jayden, he doesn’t speak.” A moment later, another teacher
brought another child onto the bus. When this teacher arrived, the driver asked her several
times if Jayden was on the bus, but she said repeatedly, “I have no idea who Jayden is.”
Because Jayden did not answer when the driver called out the names of the children on the
roll sheet, the driver did not stop at Jayden’s house and repeatedly told the dispatcher that
there was no Jayden on the bus. Later, it occurred to the driver to look at Jayden’s
backpack, which is when he realized who Jayden was and told the dispatcher that Jayden
was on the bus.
The principal said that Jayden was never “hiding,” and that the administrators were
trying to determine why the bus driver lied about that. She told Kyle and Sabine, “It was
hard to watch because the opportunities kept appearing for correction, and he just didn't
have the sense. And all he had to do was look at his backpack.” This seemed more
believable to Kyle, who had been skeptical about the report that Jayden was “hiding.” He
felt that the principal was being honest, and at that point, exhausted and discouraged,
Sabine and Kyle decided to stop pressing issue of viewing the video. The district
implemented a new system where all special education children wore nametags (Jayden
would not wear one on the front of his shirt, so his was put on his back). The children were
‘checked in’ and ‘checked out’ via the nametags.
Sabine and Kyle tried to put the upsetting event behind them. Sabine, an enthusiastic
and energetic mother, usually loved Back to School nights, viewing them an opportunity to
build positive, collaborative relationships with Jayden’s teachers and therapists. At the
Back to School night shortly after the incident, however, she and Kyle felt awkward and
uncomfortable around the school staff. They considered moving to a different school
district. Sabine said, “We just wanna-, just move forward and I think that's what's-, it's sorta
hard for us right now to get back to being excited for Jayden to be in school.”
“We feel he’s being ignored.” Immediately after the incident, Sabine had been eager
to tell me her story: “Oh, I was so angry. First person I thought of was you! (Sabine, Kyle,
and AMA laugh.) ‘Oh, she needs to hear this!’ Tick tick tick tick (sound of fingernails clicking
on a computer keyboard; makes typing motions with hands).” She sent me an email the day
after the incident:
Amber, We just had an awful experience with the district yesterday and I'd
love to share it with you. The school OR the transportation system lost
Jayden. We didn’t know where he was for about an hour. There is so much to
tell you about this. Let me know when you are back in town to chat about it
more. I misplaced your phone number or I would have texted you about this
last night. Kyle and I are still in shock, but we are thankful that he is ok. This
road has just begun for us in regards to fighting with the district, so I thought
it would be a good time for your [sic] to know about it.
About two weeks later, in mid-September, Sabine and Kyle told me the story in person.
Although they relayed all of the details, the eagerness to give voice to their experience had
been replaced with a discouraged, dejected tone. This was the last time they wanted to tell
this painful story. Sabine said:
I think this is pretty much gonna be the last time we talk about it…I don't see
us wanting to relive this. Again, because, (sighs) it's just-, not that we're
emotional about it now, but it's just-, we're just sick of it, you know, it's like,
"Alright, let's just move forward, let's go."… (sighs) You know, just trying to
recover from all of this. It's like, we've actually even considered, you know,
maybe we should move districts, you know, maybe we should just-, well
cause we just don't feel it, you know, it's just- Well, I asked about lunch time,
you know, "How do you know that my son eats lunch?" You know, well, now
what they're trying to do is obviously, they're trying to push him to take care
of himself. So all they do is just look over him, and just make sure, you know,
that he's okay, but well, "Are you trying to make him try new things? Are you
opening things for him? What's the process?” Well, I just feel like if I
shouldn't be asking that question, that she [the teacher] should actually just
be informing us of all of this. And she doesn't.
Narrative analysis considers not only which stories are told, and how, but also how
the telling of stories changes over time, and which stories are not told (Garro &
Mattingly, 2000). Sabine’s initial eagerness to tell her story is overshadowed by her
loss of trust in Jayden’s school. Now doubts creep in about how closely the teachers
and administrators are paying attention to Jayden. Are they helping him learn new
things or simply leaving him to his own devices? She continued:
They have a Camping Night at the school…If the parents wanna go, they close
off the entire school and they play a movie on the wall and everybody camps
out. That sounds great! That sounds amazing, I'd love to take Jayden. I ask,
"Well, do any of your special need kids ever go?" It's like, "Hmm, no kids from
last year, no." And all I'm thinking to myself was like, “How about some
encouragement? How about some, ‘You know, that'd be a great idea!’”…No,
she didn't do anything. And I'm like, "Ahhh, this sucks, how is it that we're
supposed to mainstream my son eventually, if you're not even giving him the
tools to do so?" You know, just push him to be more social, or-, or help him,
assist him, just something! It just bugs me so much. Just I think everything
that they're doing right now, or not doing, is just bothering me a lot. So I don't
know. Will another school district take care of us better? Well, they can't
make it any worse.
The story of the lack of encouragement to participate in the school camping night
signals not only the lack of enthusiasm for Jayden to participate in a fun, ‘typical’ kid event
that Sabine would love for Jayden to attend. It also marks for Sabine the school’s lack of
investment in his development and lack of commitment to his future participation in
regular education. This is reiterated the last time that I asked Sabine about the bus, in a
final interview the following April:
AMA: And nothing else has happened with the bus?
AMA: No other problems?
Sabine: No (voice flattens), but they still put the sticker behind him. In the
AMA: [On his back?
Sabine: On his back.
AMA: Okay, with his name?
A bracket [ indicates an overlap in the speakers’ talk.
Sabine: …No the bus, yeah, the bus is okay. The school-, (voice becomes
higher and louder) we're just-, we're having issues only because
we feel that he's being ignored.
Sabine: Well he's easy, you know? As you can see, he's easy. And I have a
feeling the other kids need more attention.
Kyle: And that might be why he's acting out also.
Sabine’s tone, usually animated and expressive, became quiet and withdrawn when she
was asked about the bus, then raised again with anger when she expressed her distress
that Jayden was being “ignored.” The incident marked a turning point for the family’s story,
as their belief in the school district began to erode. The family’s story of Jayden was one of
hope and possibility, a story that guided their enthusiasm and tireless work to support
Jayden to participate in ‘typical’ kid activities, developing skills for future success,
integration, and participation. The school staff had previously been key partners in this
important endeavor. Now, however, Sabine and Kyle felt that the school district had not
only failed to share the family’s vision for Jayden but may even be untrustworthy with his
Because of this sense of betrayal, Sabine, who had always wished that the family
budget would allow her to work less and spend more time volunteering in Jayden’s
classroom, began to take steps to make that happen. This required a considerable shift in
the family’s feelings about public assistance. In the first interview, Kyle lamented the fact
that he could not afford to pay for Jayden’s expensive, state-funded therapies himself; he
even turned down the regional center’s
offer to pay for Jayden’s diapers.
on a tight budget, Kyle viewed diapers as his own responsibility. Kyle and Sabine’s stance
had changed now that they did not feel they could trust that Jayden would be properly
cared for at school. Sabine had begun to look into getting public assistance so that she could
stop working and be involved in Jayden’s school:
After all of this happened with Jayden, I don't wanna work anymore. I don't. I
really don't. I think I should be home. I should stay home with Jayden, I
should drop him off, I should pick him up from school, I should volunteer in
his school, I should be more involved, you know, in the stuff that's happening
in his little world, you know. I wanna know-, I wanna be in the PTA [Parent
Teacher Association] and just know more about what's going on and-, and
work just doesn't allow me that…I don't wanna work. I don't. And Kyle and I
already talked about this and if there's any way that I could find any sort of,
um, financial help, you know, I would definitely get it, at least for a couple of
Sabine’s wishes echo a sentiment that reaches across racial, ethnic, socioeconomic,
and cultural lines. Despite contemporary changes in gender norms that have led to more
women in the workforce and more equal division of labor arrangements in families, many
women today feel that they should have the choice to stay home with their children,
The California Department of Developmental Services distributes state funds for services for individuals
with disabilities through 21 regional centers, nonprofit agencies that provide case management for
individuals with disabilities living in each regional center’s catchment area.
Because some children with developmental disabilities need diapers beyond the typical age that children
are potty trained, some regional centers pay for diapers as a service to families of children with disabilities.
supervising every aspect of their lives and ensuring their wellbeing (Bianchi, Robinson, &
Milkie, 2006; Borelli, Nelson, River, Birken, & Moss-Racusin, 2016). This sentiment is
perhaps heightened in the case of a child with autism, who may need a greater amount of
support, and who, like Jayden, may be unable to tell his parents how he is being treated and
cared for at school. Wealthier mothers of children with autism who have the resources to
stay at home refer to managing their children’s autism services as a full time job (Zarembo,
2011; see Manuscript 2). Less advantaged families do not have the same resources to ‘fall
back on’ when they feel that their children need extra attention; public assistance may be
some families’ only means by which they can oversee how their children are being cared
for at school. This may be a difficult decision, however, as in Sabine’s case, particularly as it
creates an economically strapped family life. Sabine’s willingness to forego her salary
shows the desperation she felt about Jayden’s safety.
Mateo Jr.’s story: ‘Independence’ versus safety. Like Jayden, Mateo Jr. was
starting a new school for kindergarten and had taken the bus the previous two years to
preschool. The first week of school, Mateo Jr. did not take the bus because of an emergency
with his baby sister, who had fallen out of a shopping cart at a store and was rushed to a
children’s hospital. While Fabiana, Mateo Jr.’s mother, stayed with the baby in the hospital
for several days, Mateo Jr.’s grandmother took care of him and his other sister Isabella,
both of whom had a diagnosis of autism. During that time, Isabella took the bus to her
special education preschool class because Fabiana had received a packet of information in
the mail indicating when and where Isabella would be picked up. Fabiana had not received
the same kind of information for Mateo Jr., however, so while Fabiana was staying with the
baby in the hospital, she made repeated phone calls to the school district transportation
department, trying to find out which bus Mateo Jr. was supposed to take. Fabiana left many
messages but was never contacted.
After several days, Fabiana and the baby went home. When Fabiana dropped Mateo
Jr. off at school the next morning, she saw his classmates getting off of a bus and asked that
bus driver if Mateo Jr. was on her roll list. The driver said yes, so Fabiana said, “Okay, he’ll
start taking your bus today. His name is Mateo Jr. and he’s in Ms. Hennington’s [class].” The
driver said that Mateo Jr. would not be dropped off at home this year, but he would be
dropped off at an elementary school near their house at 1:30.
At 1:25, Fabiana arrived at the school where Mateo Jr. was supposed to be dropped
off. At 1:45, she thought maybe she had misunderstood the bus driver. Fabiana called the
transportation department, and twice she was transferred to the voicemail of the person
who had still not returned any of her phone calls. Calling back a third time, Fabiana
explained, “I need to speak to someone because my son is supposed to be on the bus, but
he’s not here, where the bus driver told me he would be.” She heard the dispatcher contact
a bus driver, then report back to Fabiana, “We can’t find him.”
By this point, it was almost 2:00. Fabiana thought, “Oh god, where’s my son?!” A bus
arrived, so Fabiana, still on the phone, approached the driver, a different woman from the
one she had spoken to that morning. Fabiana asked if Mateo Jr. was on the bus. The driver
yelled to the back of the bus, “Mateo Jr.?!” There was no answer, so the driver told Fabiana,
“Nope, he’s not on my bus.” The driver then looked at her clipboard and said, “Yup, his
name is right here, look. He’s supposed to be on my list, but he wasn’t there when I picked
him up so I just left.” Fabiana, alarmed, thought, “What the hell are you telling me?!” After
the dispatcher and driver spoke to each other briefly, the driver left. Fabiana, still on the
phone with the dispatcher, started driving to Mateo Jr.’s school. On the way, the dispatcher
said, “Oh, we found him. The bus driver will be there in ten minutes. Go back to the school
where you were at.”
Twenty minutes later, around 2:40, the bus arrived. The same bus driver from that
morning opened the door and said cheerily, “Hi!” Fabiana said, “Where’s my son?” The
driver, laughing, said, “Oh, he’s right here. I didn’t realize he was on my bus.” The driver
said that she had been dropping off children when Mateo Jr. said, “Are you going to take me
home? Because you passed my house.” The driver, still laughing, told Fabiana, “So I turn
around and I said, ‘Well, who are you?!’ And he says, ‘I’m Mateo Junyoh Weyes.’” (‘Mateo
Junior Reyes,’ but he is unable to pronounce his ‘r’ sounds). The driver brought Mateo Jr. to
the front of the bus. Fabiana said later, “I really did [want to punch her] cause she was
laughing and I thought, ‘This isn’t a joke. You may think it’s funny, but it’s not your kid.’”
She thought about what could have happened: “What if he fell asleep? What if he was
nonverbal? What if, what if, what if, what if, what if, what if?”
Mateo Sr., a special education teacher in a different district, had previously worked
for the district where Mateo Jr. attended school. He and Fabiana had always made an effort
to be collaborative during IEP meetings, as they were sympathetic to the district’s
perspectives and did not want to be seen as “difficult” parents (see Manuscript 2). After the
bus incident, however, they were outraged, mostly by the driver’s nonchalant attitude.
Mateo Sr. called an emergency IEP, emailing the superintendent, special education director,
transportation director, principal, and autism specialist. In the IEP meeting, Fabiana felt
that the transportation director was “very arrogant,” assuring them that nothing like this
had happened in seven years. He said, “I can guarantee you it won’t happen again.” He and
Mateo Sr. argued back and forth about this, Mateo Sr. claiming that the director of
transportation could not guarantee that it would not happen again because it happened
this time. Mateo Sr. said, “I need a one-to-one aide for my son on the bus, and I need him to
be dropped off at home,” which seemed to make the director of transportation angry.
The autism specialist for the district, Julieta, said that they would have a one-to-one
aide for two weeks, but “ultimately, we want him to be independent.” Fabiana and Mateo
Sr. stepped outside to talk about it privately. Mateo Sr. said, “Let’s just take it. We’ll revisit it
in two weeks. The point is we do want to make him independent. We want him to be able to
do stuff without mommy and daddy.” Fabiana felt torn: “And part of me like says, ‘Yes, I
know,’ and another part of me is like, ‘Well, shoot, if this happened, you can’t guarantee that
it’s not going to happen again.’ It’s like everything runs through my mind.” It “took a lot of
convincing” for Fabiana, but eventually she agreed, and an aide was put on the bus
During that time, Fabiana spoke to a friend, the mother of a girl with autism, and
found out that a similar situation had happened to their family. The previous year, this
woman’s daughter, who was nonverbal, was put on a school bus, but the driver and bus
aide did not know who she was. The aide texted another aide, got the girl’s teacher’s phone
number, and texted the teacher with a picture of the girl and the message: “Who is this kid
and where does she go?” The mother found out the next day from the teacher but was too
afraid to complain to the school district for fear that her daughter would be mistreated by
school personnel. For Fabiana, it was shocking that this had happened to her friend,
especially because the transportation director had been so confident that children were
never unaccounted for by transportation personnel.
After hearing this story, Fabiana felt even less confident that Mateo Jr. was safe while
under the care of the school district transportation department. An IEP meeting a few
weeks later, which I attended with Fabiana and Mateo Sr., was held as a “case review”
regarding the aide on the bus. Fabiana and Mateo Sr. had a clear, unified message: They
wanted the aide to be kept on the bus for the remainder of the school year, about seven
more months. Julieta, the autism specialist who seemed to have decision-making power on
the issue, said that Mateo Jr. was doing well and did not need the aide. Fabiana and Mateo
Sr. emphasized that they needed the aide on the bus for their peace of mind; Julieta
emphasized that the IEP is for the child’s needs, and they could not justify providing an aide
if the child did not have behavior problems. They went back and forth on these points for
some time, the district staff focusing on Mateo Jr.’s good behavior and the parents focusing
on what they needed. Per my fieldnotes, Julieta said:
We know at the beginning of the year, there was this situation that was
confusing, and you didn’t know where Mateo Jr. was, so we moved
transportation from ‘site to site’ to ‘door to door,’ because we recognized the
conflict that you experienced then, your questions and concerns…And at this
point, there’s not an issue…We can’t have a procedure to just keep an aide on
the bus, without a need.
Every time school staff focused on Mateo Jr.’s good behavior, Fabiana responded, “But
when my son is misplaced, then it is about me. I’m the mother and it becomes about me.”
They finally came to agree that, because there were other children on the bus who did have
behavior challenges, there would be one aide on the bus for all the children on an ‘as
needed’ basis (e.g., to be revisited if the other children no longer needed the aide). Although
this was not really what Fabiana and Mateo Sr. wanted (they wanted assurance that the
aide would stay on the bus the entire year), Mateo Sr. and Fabiana agreed, under the
condition that they would be contacted ahead of time if there was not an available
substitute aide, or if the aide was going to be removed.
“Eventually my son will be independent; that's what I foresee for him, obviously.”
Immediately following the IEP, I interviewed Fabiana and Mateo Sr in the parking lot of the
school. Several times, Fabiana mentioned Julieta’s comments about Mateo Jr.’s
independence. Fabiana, put in a position of having to defend her desire for the aide,
responded to the tacit accusation that she did not support her son’s independence. Fabiana
Well, yeah I want him to be independent obviously, but…that's not just like a
slight little mix up. That's them telling me, "I cannot find your son. I don't
know where he is at." And for a mom, for them to tell you-, okay, so let's say
your son or your daughter's a little older, they're a typical[ly developing], you
know, kid, but my son is 5 [years-old], he just turned 5. And I was like
freaking out, so I don't feel like they've ever taken responsibility and said,
"You know what, I am so sorry," you know, "And we will put this in place."
It's more of, "Well, you know, it happened but he wasn't really lost." (AMA:
Oh really?) That's exactly what they said the first time. You know, "Well, it
happened but you know, he wasn't really lost. He was-, he was somewhere."
Fabiana argued that an emphasis on independence might be reasonable for an older,
typically developing child, but in the case of a 5-year-old with autism, she felt that it was an
unreasonable expectation. During the interview, Mateo Sr., too, was compelled to defend
Mateo Sr.: And the thing is, it's not like I'm asking for a lot. I'm not asking for
a one-to-one or I'm not asking for him to get special treatment or-,
I'm not asking for anything major. I just want someone on the bus
for all the kids, you know, to also help all the other kids, and
they're just not budging, so I mean-
Fabiana: They're [not budging.
Mateo Sr.: [Being a special ed teacher myself, you know, I know the
protocols, I know the procedures, I know what districts can and
can't do. They're just trying to save money and that's, you know,
my opinion, that's just not right.
Fabiana said, “Eventually my son will be independent, and that's what I foresee for him,
obviously.” To Fabiana and Mateo Sr., a bus aide was not a hindrance to their son’s
independence but was actually a support to help him to develop future independence.
Although the school district’s discourse of independence appears at the surface to be a
concern for the child’s development, Fabiana and Mateo Sr. felt that it was actually an effort
to save money. Implicit in Mateo Sr. and Fabiana’s arguments during and after the IEP was
that when the district ‘messes up’ so badly and breaks parents’ trust, the IEP becomes
about the parents’ needs, too. In other words, they were insisting that their need to feel that
their child is safe when under the care of the school district should be part of what the
district is obligated to provide.
The school district staff in the IEP meeting did not seem to understand Fabiana and
Mateo Sr.’s reason for insisting on the aide, which was in essence, ‘We cannot trust you, so
you have to provide an aide.’ The district staff used passive language that had the
appearance of empathy but actually avoided culpability, such as, “this situation was
confusing;” “you didn’t know where Mateo Jr. was;” and “he wasn’t really lost.” This
phrasing kept a distance between the district staff and the parents, which made Fabiana
and Mateo Sr. feel that they were not on their side. It could be that the district staff were
concerned about issues of liability, e.g. that admitting fault would open them up to a
lawsuit. From the perspective of the parents, however, this language and ‘professional
distance’ served to invalidate their feelings, detract from the traumatic nature of what they
had experienced, and minimize the critical and potentially life-threatening nature of the
situation (see Table 2). By repeatedly denying Fabiana and Mateo Sr.’s request for support
and emphasizing that “they” wanted Mateo Jr. to be “independent,” the district staff’s tactic
suggested that the parents did not want their son to be independent.
Jayden’s and Mateo Jr.’s bus stories provide an in-depth look at how Latino families
experienced the school district transportation department’s failure to deliver their children
home from school safely and on time. The bus stories become an entry into a contested
discursive terrain where seemingly conflicting priorities of safety and independence,
differently understood by the parents and the school district officials, become arguments
for or against specific services and supports (e.g., an aide on the bus to supervise children’s
safety, or extra oversight during lunch to ensure that the child eats). The themes reflected
in the bus stories, the cost of parents’ broken trust and the school district’s use of a
discourse of ‘independence’ to limit and deny children services, were patterns found across
the data corpus. Many parents in the study described their feelings of betrayal as they came
to realize that the school district was not ‘on their side’ and did not prioritize their child’s
best interests (see Manuscript 2). As I have shown in Manuscript 2, in some cases this
broken trust actually caused parents to ‘fight’ because they felt alone, up against more
powerful school districts that were motivated to save money.
Institutional prioritizing of the child’s independence as a basis for denial of services
and supports was also a common pattern across the data. The ‘independence’ reason was
most commonly used in response to parents’ inquiries about whether their children
needed one-to-one assistance at school. Akin to using legal terminology from IDEA (U.S.
Department of Education, 2004a) to deny services (see Manuscript 2), emphasizing the
need for the child to be independent operates as a ‘trump card’ in the conversation. If
parents continue to request the support, they appear as though they do not also value the
child’s development of independence. It is noteworthy that in the Los Angeles Unified
School District in 2011, White elementary school students on the city’s affluent westside
had one-to-one classroom aides at more than 10 times the rate of Latino students on the
eastside (Zarembo, 2011). The one-to-one aides on the westside were apparently not
perceived by school officials as interfering with the children’s acquisition of independence,
nor did they deny them to families on the basis of cost, which can reach $60,000 per year.
The ‘independence’ and ‘limited budget’ arguments, however, were the two most common
reasons that the Latino parents in the study heard from officials when their requests for
their child’s services were denied (see Manuscript 2).
Such interactions also reveal the competing theories of the child’s subjectivity held by
parents and school districts. Parents viewed children as having great potential, if given the
proper support. In my ethnographic observations in IEPs and parents’ stories of previous
interactions with teachers or school administrators, a different theory of the child’s
subjectivity was portrayed. Sometimes, the language used by school district staff revealed
an underlying assumption that children with autism were inherently unmotivated,
incapable of learning to ‘work’ if an adult was present to help. As recorded in my fieldnotes,
a teacher in an IEP meeting that I attended told Nicole, a mother in the study, that Rafael Jr.,
her 6-year-old son with autism, “needs to work. He had mom and dad five-and-a-half years
before the baby came, and he was used to adults doing everything for him.” The teacher’s
‘theory of the child’ was clear; she said, “All humans are intrinsically lazy. Everyone. If we
can do anything more easily…we will. Rafael has learned that ‘out.’ We're trying to get him
to take action on the world” (per my fieldnotes).
When Nicole inquired about whether Rafael Jr. might need a one-to-one aide (see
Manuscript 2), the response was similar to the responses many families in the study
received when they asked about this kind of support: School district staff argued that one-
to-one aides were a hindrance to children’s development. With an adult “hovering,” the
child would “become more dependent,” would not “take initiative,” and would become “less
active because someone else would be doing everything for him” (per my fieldnotes). When
Elizabeth received a similar response from her son Tanok’s teacher, she responded with,
“No, I don't want [an aide] to do everything for him. I just want her to be there in case he
needs help with things, you know, to redirect him.” In an interview with me, Elizabeth
reflected on her conversation with the teacher:
This program was only a four-hour program…I know him better than you…I
would hate that. It seemed like they would almost disregard what we had to
say. I’m like, “How can you tell me that, when I’m his caregiver the other 20
hours of the day?” Who’s gonna have a better idea than their parents?
Professionals’ emphasis on independence echoed the neoliberal “no legitimate
dependency” discourse (Peacock et al., 2014). The discourse served to de-value
interdependence, and it prevented professionals from understanding when parents’
requests for supports had less to do with their children’s inabilities, and more to do with
parents’ loss of trust for professionals. Reconceptualizing mobility for children with autism
necessarily includes consideration not only of their safety but also of their families’ feelings
about their safety. Adults with disabilities argue that full participation in life includes both
the ability to feel safe and the freedom to take risks (Hammel et al., 2008). In Feeley and
colleagues’ (2015) study, stakeholders viewed caregivers of individuals with autism as
“over-protective,” preventing them from the opportunity to take public transit or to travel
independently. These stakeholders noted the importance of giving individuals with
disabilities the “dignity of risk” (2015, p. 25), or the right to self-determination and
decision-making. Without disagreeing with the value of giving adults with disabilities the
ability to make choices with some degree of risk, I argue that families’ concerns for the
safety of their children with autism, even adult children, should be given attention and
respect in research and interventions that aim to understand and support the mobility and
participation of individuals with autism.
The parents in this study wanted their children to be safe and supported; they also, like
school district staff, wanted their children to learn independence, and they saw the school
bus as an opportunity for skill building to facilitate children’s future participation. In a
qualitative study with South Asian Muslim immigrant families of children with autism
living in the United States, parents feared for their children’s safety on school buses, so they
drove them to school or rode the bus with them to ensure that children were not
mistreated (B. Jegatheesan, Miller, & Fowler, 2010). These parents also emphasized the
importance of including their children with autism in ordinary social and religious
activities in the community:
The fact that the child had autism was not invoked as grounds for excluding
him from activities that might be challenging. Parents firmly believed that
participation in ordinary social life was the means by which children
developed and overcame limitations (B. Jegatheesan et al., 2010, p. 103).
Similarly, the Latino parents in this study were both concerned for their children’s
safety on school buses, and considered the potential for their children to develop skills and
abilities through taking the school bus. The independence discourse, when used by
professionals to argue against providing assistance to children, implies that the two
perspectives are mutually exclusive. While the parents and professionals in the study
shared the view that children should learn to be independent, parents used it as proof that
the child needed assistance, while professionals used it to argue against the provision of
Privatized Transportation and Responsibility
A final issue of importance in school transportation for children with autism is who
should be held accountable when children are endangered. In line with the transnational
trend of privatization under neoliberal economic policies (Navarro, 2007), an estimated
4,000 private bus companies are contracted by U. S. public school systems to transport 25
million students to and from school (Price, Herzenberg, Brandon, & Herzenberg, 2012). The
National School Transportation Association claims that outsourcing transportation solves
many “headaches” for school districts, and that “almost all cases” have been successful
(NSTA, 2013, pp. 34–35):
Contracting is a successful strategy for solving a variety of transportation
problems. Partnering with a private school bus company whose expertise is
pupil transportation allows school administration to concentrate on their
primary function – educating students. Additional benefits include a
community-based yellow bus service that is safer, more efficient, and much
more cost-effective (NSTA, 2013, p. 36).
Some economists, however, call into question the cost-effectiveness of outsourcing
transportation (Price et al., 2012). While the NSTA claims that their drivers are better
trained than those employed by school districts, a number of the news stories in Table 2
raise questions about how well private company drivers are trained to safely transport
children with autism. The stories also suggest that the outsourcing model may enable
school districts to evade blame when children are endangered.
In many of the news reports, school districts fired the private the bus companies
they had been contracting with after the incidents, but it is unknown what measures were
taken to ensure that the next bus company hired by the district provided better training for
its drivers and aides with regards to transporting children with autism. An extreme case in
Paterson, New Jersey was called “a plague of school district busing problems” (Malinconico,
2015 para. 1): There were three incidents in less than three years in which children with
disabilities were endangered while under the care of private bus companies contracted by
the Paterson School District. It appears that with each incident, the district fired the bus
company and hired a new one, only to have another incident with that company (see Table
2, sources 18, 25, & 37). What is perhaps most surprising is that the first of these three
incidents was the death of a 14-year-old girl with “emotional problems” who jumped out of
the back of a moving minibus that, despite a contractual obligation to have two aides, only
had one at the time of the girl’s death. It was a tragedy so extreme that the Paterson school
board president said it should have been a ‘wakeup call’ for the district, yet two more
incidents occurred in the next two years. A school board member said, “I don’t know how
well they’re doing picking these companies” (Malinconico, 2014 para. 6).
In another tragic incident in California in September 2015, a 19-year-old young man
with autism died after being left on a school bus all day in near triple-digit heat (see Table
2, source 35). After the incident, the Whittier Unified School District told reporters that
ultimately, protocols such as checking the bus for remaining students are the responsibility
of the private bus company it contracted with. For five months, the school district and bus
company both continued to deny responsibility. In the course of a lawsuit that the parents
filed against the district and the company, documentation bythe bus company was
discovered that acknowledged the driver’s responsibility. In response, the bus company
admitted partial liability but claimed that the district had failed to “receive” the young man
when the bus arrived at school and thus should also be partially liable.
These two tragic incidents, along with the other news stories in Table 2, raise
questions about whether the outsourcing model is actually safer for children with
disabilities, as it may make unclear who is accountable to prevent further situations in
which children with autism are endangered. Educators Mathis and Jimerson (2008) argue
that while there is an allure for school officials to privatize transportation, “Private
contracts may create new issues for school leaders, who remain legally responsible for a
vital public function but who have lost effective control of the domain” (2008, p. 5). The
issue of responsibility is a crucial first step in addressing the safety of children with autism
on school transportation vehicles. Whether they are employed by private companies or
school districts, drivers and aides need high-quality, intensive, ongoing training in how to
safely transport children with autism. Further research is needed to understand the other
factors contributing to situations in which children with autism are unsafe while taking
school transportation (see Table 2).
For the Latino families in the study, trusting professionals to keep their children safe
was inextricably tied up with trusting that professionals were committed to the hopes and
plans that families held for their children to be more independent, to be put in mainstream
classes alongside peers, and to have opportunities to develop life skills. The discourse of
independence used by school districts to argue against the provision of supports like one-
to-one aides implicitly positions parents as not desiring their children’s independence. All
of the Latino parents in this study had hopes for their children to live lives of both
independence and interdependence. The data presented in this paper, along with the
increasing number of reported incidents in which children are endangered while under the
care of public school district transportation departments, indicate an urgent need to
address the “transport situation” (T. Falkmer et al., 2001, p. 90) for individuals with autism.
As I have argued, this includes a need to reconceptualize mobility (Sheller & Urry, 2006) in
the context of autism, starting from the perspectives, opinions, and ideas of individuals
with autism and their families and caregivers, in order to imagine new forms of
environmental adaptations that enable individuals with autism to safely travel through
their communities. As argued by the parents in the study, safety and independence are not
mutually exclusive; rather, both must be supported.
News Stories of Incidents Involving Individuals with Autism and Other Developmental Disabilities on School Buses, Public
Transportation, and Paratransit Vehicles
Date Location Age Description Outcome
1 7/7/03 Flemington,
4 y/o A boy with autism was left strapped into a car seat on a
school bus for 4.5 hours on a hot day. He was being taken
to a summer program for children with autism. When the
bus arrived at the school, the boy was not helped off the
bus and no one checked the bus to ensure that no students
were left. The bus was parked in the Hunterdon Central
Regional High School parking lot. The boy was found when
the driver returned to pick up other children. The boy
received medical treatment for heat exhaustion.
The driver was fired by the Hunterdon
Central Board of Education and
charged with abandonment/neglect of
a child. The parents sued the
School District Joint Transportation
Department and the driver. The
following Spring, a “Child Check-Mate”
system was installed in all buses,
requiring drivers to flip a switch at the
back of the bus in order to prevent an
alarm from sounding before they exit
the vehicle. The driver was later
enrolled in a Pre-Trial Intervention
Program in which, if he completes a
probationary period, charges will be
dropped and his record will be
2 8/22/08 Knox
14 y/o A 14-year-old girl with Asperger’s syndrome was
threatened and raped by an 18-year-old male student on a
special education school bus. The only adult present was
the driver. The male student pretended to use a fake
earpiece, telling the girl that he was communicating with
people in other cars on the road, who would hurt her if she
did not comply with his demands. The male student was on
that bus because he was being transported to a sex
offender treatment program (court records indicate that
he had been labeled a "sexual predator" and deemed too
The family sued the Knox County Board
of Education in a $3 million civil suit. A
spokesman for the Knox County School
District declined to comment due to
the pending lawsuit.
Date Location Age Description Outcome
dangerous to be unsupervised). Per the lawsuit, the bus
owner had previously warned Knox County School officials
that the girl “would not make it two days” on the bus,
which he knew was full of “rowdy” boys. When the mother
initially complained to the Know County School officials
about the placement of her daughter on the bus, no action
3 10/16/08 Bronx, NY 3 y/o A boy with autism was left on a school bus for more than 6
hours after the driver and matron failed to check the
vehicle for remaining students. His mother was not
notified of his absence by the school. When she arrived at
school at 2:00 that afternoon to pick him up, she was told
that he never arrived. Police found the boy on the bus
parked at the New York City Department of Education
school, dehydrated and hungry. The boy was treated
medically and reported at be in stable condition.
The driver and matron were both
arrested and charged with reckless
endangerment of a child. The private
bus company Pinnacle Bus Service
declined to comment.
4 3/18/09 Sumter, SC 10 y/o A boy with autism was assaulted by a 19-year-old school
bus monitor. The child’s mother says that he was grabbed
by the neck, pushed, and punched. The mother learned
about this through her friend's son, who was also on the
bus. Police say that video from the bus shows the monitor
putting his hands on the boy’s neck and pushing him down.
The mother filed a lawsuit against the
Sumter County School District Two and
the bus monitor. The district
superintendent said that the monitor
was fired the day that the mother filed
the complaint. The bus monitor was
arrested and charged with assault.
Trumbell, CT 9 y/o A girl with autism was physically abused on a school bus by
a bus monitor multiple times. Police report that video from
the bus reveals the monitor pinching and twisting the girl’s
hands and fingers on three occasions, while the girl cried
out in pain. The driver was the bus monitor's mother, who
is under investigation for sending texts while driving
students on the bus.
The articles do not report any
statements from officials at the
Trumbull School District. The family
sued the private First Student Bus
Company. The monitor was suspended
for 6 months and received 18 months
Date Location Age Description Outcome
6 9/24/09 Bedford
12 y/o A boy with autism was assaulted by a school bus driver and
special education aide. Video from the bus shows that the
boy was strapped into the seat belt while he was kicked,
choked, hit with a fly swatter, and sprayed in the face with
an aerosol chemical. The family's lawyer stated that a year
prior, the father had notified Bedford County School
District officials of suspected abuse on the school bus
when the boy had come home with marks on his face.
The driver and aide were fired by 6
days later the Bedford County School
District. The family filed a $20 million
lawsuit against the school district, the
bus driver and aide, and the county's
director of special services. The driver
and aide were convicted of
misdemeanor assault charges. The
School District lawyer was not
available for comment.
7 8/24/10 Davis, CA 6 y/o A girl with autism was molested multiple times on a school
bus by the driver. The girl's parents became concerned
when she said she had an “owie” in her groin area, and
after her father observed inappropriate contact between
the driver and his daughter, such as the driver sitting with
the girl on his lap inside the bus. The parents asked to view
the bus video but were denied. The director of
transportation viewed the video and, within 3 days, made
a report to Child Protective Services. Video provided to
police by the Woodland Unified School District show the
driver holding the girl in his lap while driving, kissing the
girl on the lips and touching the lower half of her body, and
show the girl’s dress above her hip area after having
“escaped his grasp.”
The Davis Unified School District
contracts bus services from the
Woodland Unified School District. The
driver, a district employee, was put on
administrative leave, then resigned.
Four years later, the District Attorney
claimed there was insufficient
evidence, and no charges were
brought against the driver. The family
the filed a lawsuit against the Davis
and Woodland School Districts and the
8 2/9/11 Bronx, NY 12 y/o A boy with autism was pushed, choked, and hit by a bus
matron on a school bus for special needs students. The
boy’s mother says she saw it happen just after her son
boarded the bus, while she was standing on her porch. The
private bus company Mar-Can Transportation, contracted
by the New York City Department of Education, claims that
this behavior is out of character for the matron.
The matron was arrested, arraigned on
two counts of assault, and released
without bail. She was suspended by
the New York City Department of
Education pending an investigation.
Date Location Age Description Outcome
9 6/20/11 Salt Lake
A teenage boy with autism “tumbled out of” the back of a
school bus driving at freeway speeds. He was being
transported home from a summer program when he
unbuckled his seat belt, walked to the emergency exit at
the back of the bus, and “scooted out” onto the interstate.
Despite the alarm sounding, the driver failed to notice that
the boy was missing and continued driving. The aide heard
the alarm, but the door did not appear to be open and she
assumed the student was ducking down in his seat. She
then (1-1.5 minutes after he fell out) walked to the back of
the bus and realized what had happened, and the driver
then pulled over. Other drivers on the interstate stopped
to help and called 911. The boy was treated for road rash
and lacerations, and it was later determined that he had
sustained a concussion. According to his district’s lawyer,
his injuries have resulted in the need for mediations and
possibly full-time care for his lifetime.
The driver and attendant were placed
on leave by the Granite School District
pending the investigation. Four year
later, the family sued the Granite
School District, which acknowledged
that the driver had been negligent. A
settlement was reached and the state
paid the family $648,700. Legislative
leaders unanimously approved the
Various Parents of children with special needs, including autism,
were concerned about a number of problems with the
New York City Department of Education transportation
system for several years. Problems included routes that
were several hours long, leaving children without food,
water, or bathroom breaks; buses arriving hours late to
pick up children, and dropping them off at school hours
late; and buses not showing up at all to pick up assigned
children. Buses did not have air conditioning, and parents
worried about children’s safety with no food or drink on
long bus rides in the heat. Specific concerns from parents
of children with autism included: An 8 y/o with autism
whose father was concerned that he might get heatstroke;
a 4 y/o with autism whose 90 minute bus ride included a
35 minute stop without air conditioning; a 4 y/o with
autism who wet his pants on a 3 hour bus ride; a
preschooler with autism whose father had to leave work to
get his child from school and take him home; and a 3 y/o
Parents formed advocacy groups and
pushed for changes such as shorter
routes and air conditioning on all
buses. Online advocacy efforts and
news reporting continued through
2015. As of 3/2/16, the Department of
Education’s posted Request for Bids for
Transportation services was marked
“Postponed until further notice.”
Date Location Age Description Outcome
with autism whose bus ride home took 4 hours one day
and 5 hours another day that week, leaving his mother and
aunt thinking that he was missing. The issue remained a
controversy for a number of years.
11 1/23/12 Cecil
11 y/o A boy with autism and ADHD was beaten up at a school
bus stop by another student while peers watched. One of
the students took a video of the abuse with his cell phone
and posted it on Facebook. The family said that the boy
has bullied constantly at school, in the Cecil County Public
The school reports that disciplinary
action was taken against the involved
students. The video was removed from
Facebook. The boy who instigated the
fight was charged with second-degree
12 9/1/12 Laurel, MD 11 y/o A boy with autism was handcuffed by police on his school
bus ride home, after the driver and aide called the police
reporting that the boy had escaped from his seat belt and
bit the driver, aide, and two other students. No one was
treated for injuries. Howard County School District officials
claim that the driver and aide followed correct protocols.
The boy’s mother said that her son should have been
No arrests were made.
13 9/11/12 Anaheim,
15 y/o A boy with “severe” autism who is nonverbal and has
seizures was left in a school bus, parked in the Anaheim
Union High School District bus lot, for 6.5 hours alone. He
had been picked up by the bus at 7:20am but did not get
off the bus at school. The driver found him on the bus at
the end of the school day. Temperatures were in the mid-
80s. The boy’s mother found out when she received a
phone call from the school at 2:00pm telling her to pick
him up from the district office, and that he had been left
inside the school bus all day long. His mother was unable
to get an explanation or details about what happened from
Two months after the incident, the
Anaheim Union High School District,
which operates its own transportation
system and was thus the driver’s
employer, was still conducting an
investigation. The district offered to
provide an instructional aide to ride
the bus with the boy, but his mother
declined, saying she no longer trusts
the school district and drives her son
14 9/28/12 Tampa, FL 8 y/o A girl with autism was “kicked” off a school bus by the
driver (i.e., used her foot to push the girl). The girl’s ankle
was fractured. Video from the bus shows that the girl
demanded to be let off the bus and was told by the driver
to wait. The girl then slapped and pushed the driver, who
The bus driver was fired by the
Hillsborough County School District.
The driver was charged with
aggravated child abuse.
Date Location Age Description Outcome
then used her foot to push the girl down the bus steps.
15 9/28/12 Chilhowee,
Parents of two boys with autism filed a police report for
suspected abuse by a school bus driver. The parents of a 5
y/o with autism said that the driver restrained the boy’s
hands with duct tape. The mother of a 7 y/o with autism
said that when the boy was kicking the back of the driver’s
seat and yelling, the driver threatened to use duct tape his
The sheriff’s office and Chilhowee
School District were conducting
16 10/9/12 Parkland, FL 13 y/o A boy with autism was choked by a bus assistant with a
safety harness on the school bus after the boy wet his
pants. Video from the bus shows the assistant pulling the
harness from behind, causing the boy to cry out in pain
and reach back to try to stop it, while the driver laughed
and scolded the boy for urinating on himself.
The assistant was arrested and charged
with aggravated child abuse and
released on bail. He was reassigned to
a different job in the Broward County
Public School District transportation
system that did not involve working
with children, pending a district
investigation. The driver was
suspended but not charged.
17 11/27/12 Washington,
3 y/o A boy with autism was left strapped into his seat on a
school bus in the bus yard for hours after being overlooked
when the bus dropped children off at school, then
overlooked again when the bus driver and aide parked the
bus in the bus yard. He was discovered at 2:00 pm by the
aide when she got back on the bus. The bus aide had been
assigned to assist this particular child and admitted to
sitting in the front of the bus near the driver rather than in
the back. The driver and aide also admitted to disabling an
alarm system which typically requires the driver or aide to
walk to the back of the bus to turn it off before exiting to
ensure that they check for children left on the bus. The
Washington State School superintendent said it was a
gross violation of protocol.
The driver and aide were fired after an
investigation by officials from the
District of Columbia Public Schools. The
aide was charged with second-degree
cruelty to a child.
Date Location Age Description Outcome
18 1/2/13 Paterson, NJ 14 y/o A girl with "emotional problems" (no diagnosis given)
jumped from an emergency exit on a school minibus. She
suffered head trauma and died 3 days later. The girl’s
family claims that the girl’s teacher had requested several
times that the girl be provided with different
transportation because the small bus agitated her. The
girl’s family had also previously asked that the girl receive
home school services because she was so agitated when
taking the bus and had walked into traffic several times.
The Paterson School District claimed that K&M violated the
terms of contract in 2 ways: 1) K&M had agreed in
September to provide 2 aides on the bus, but there was
only 1 at the time of the girl's death 2) K&M was only
supposed to transport Paterson children but was en route
to drop off a child in a different area when the girl jumped
from the exit.
The girl’s family filed a lawsuit against
the Paterson School District, the bus
driver, and the aide. The Paterson
School District terminated their
contract with the private bus company
19 7/23/13 Sussex
Two boys with “special needs” (no diagnoses given) were
left on a school bus in hot weather with the windows up
for 45 minutes. The bus driver reportedly skipped 2 of 3
planned stops then parked the bus outside the home of
the owner of the private bus company MacNova without
realizing the boys were still inside. The boys’ parents
contacted the school wondering why they did not return
home after school. The school called the private bus
company MacNova but could not reach the owner or the
driver. The school district then contacted the police, who
found the children on the bus at the home of the bus
company owner. Macnova personnel told school officials
that the children were on an air-conditioned bus with an
adult present, but police discovered this was not true. The
children were dehydrated and distressed. Vernon
Township School superintendent said that it was
The Vernon Township School District
fired the private bus company
MacNova. The driver was charged with
cruelty and fourth-degree neglect and
sentenced to 3 years of probation,
fined, and ordered to undergo a
mental health evaluation.
Date Location Age Description Outcome
20 10/14/13 West Palm
20 y/o A young man with autism was threatened, cursed at, and
tied up by a driver on a public bus. The driver used a seat
belt to tie the young man’s hands together. An 18-year-old
girl with autism who was on the bus recorded the incident
on her cell phone. The private bus company, Metro
Mobility, was contracted by Palm Tran, a public bus system
run by the Palm Beach County Government. The driver
claims that the young man tried to open the bus door.
The driver was fired by the private bus
company, Metro Mobility.
21 11/4/13 Council
9 y/o A boy with autism was allowed by a school bus driver and
monitor to get off at the wrong stop without an adult
present to greet him, miles from his home. The boy
roamed for an hour, going door to door at an apartment
complex looking for his home. Video from the bus shows
that as the boy got off the bus, the monitor called him by
the wrong name, mistaking him for a different student. A
“good Samaritan” found the boy and called the police. The
boy’s guardian had also called the police when he did not
return home from school. The police reunited the boy and
The driver and monitor were fired by
the private bus company, First Student.
The Council Bluffs School District
claims that they followed the correct
procedure when the teacher turned
the students over to the care of the
driver. The boy’s guardian sued First
Student Bus Company.
22 8/13/13 Union
11 y/o When a girl with autism began “acting out” on a school bus
on the way to school, Union County school officials called
the police. The mother was told that her daughter’s
behavior made it unsafe to continue driving, and she was
told to pick her daughter up from a nearby subdivision
where the bus had stopped. The mother claims that the
girl’s behavior was not uncommon, and that her IEP stated
that if necessary, the girl should be restrained using a
special safety belt. The mother does not know why the
harness was not used and wonders if there was not one
available on the bus. She believes that the district failed to
properly train the staff.
No outcomes are reported.
Date Location Age Description Outcome
23 9/30/13 Long Island,
5 y/o When a boy with autism began kicking a seat on a school
bus, the bus aide grabbed his arm and, police say, twisted
it behind his back in an effort to discipline him. The boy’s
arm was fractured and he was bruised on his face and
abdomen. The aide claims that he was trying to prevent
the window from breaking as the child banged his head
The aide was suspended from work at
the private bus company ACME, which
was contracted by Commack School
District. The parents were considering
filing a lawsuit against the bus
24 11/15/13 Brooklyn, NY 14 y/o A “largely nonverbal” girl with autism got off the school
bus at home without a shirt (it was not uncommon for her
to take off her shirt when agitated) and with scratches on
her shoulders, back, and under her arms, according to her
mother. The school director said she was unharmed when
she left school; the bus driver and aide said she must have
been injured before she got on the bus. The private bus
company, Careful Bus Company, had cameras on 8% of its
fleet but not on this bus. The girl’s mother believes that
the incident happened on the bus because the girl was
afraid to ride the bus afterwards. She filed a police report
with the NYPD.
At the time of reporting, police were
investigating. The New York City
Department of Education said they
transferred the girl to a different bus
route with the same bus company. No
other outcomes were reported.
25 5/20/14 Paterson, NJ 10th
Two special education students, a brother and sister,
jumped off of a school bus when it stopped to pick up
other students and ran away. There was a driver and aide
on the bus. The students were found an hour later at their
home. After the death of a 14-year-old girl on a bus in the
same district, Paterson School District officials had
promised to do spot checks to determine if private bus
companies were fulfilling the rules of their contracts. After
this incident, the school board president said that the spot
checks had not been performed as promised.
The Paterson School District did not
reveal the name of the private bus
company they were contracted with at
the time of this incident. The district
stated that they had the driver and
aide removed from that route.
26 6/3/14 Pasco
10 y/o After a boy with autism who was harnessed in his seat on a
school bus used “foul language,” the bus aide slapped him
multiple times. Video from the bus shows the man striking
the child, who cries out in pain. The boy’s mother said he
The aide was suspended from his job
and charged with two counts of child
abuse. It was later discovered that he
had several complaints against him in
Date Location Age Description Outcome
had bruises on his arms and neck. his personnel file with Pasco County
School District. The driver was released
from the Pasco County Detention
Center on a $10,000 bond.
27 8/11/14 Orange
11 y/o A boy with autism and his grandfather were kicked off a
city bus because of the boy's outbursts. The driver told
them to get off at a local community college, about a half a
mile away from their home. They walked the rest of the
way home. His mother says that riding the bus is one of the
few things that calms her son. She said his outbursts are
expressions of excitement and that he was not
endangering anyone. Orange County Transit Authority
officials said in a statement that their drivers are trained to
deal with individuals with disabilities.
The boy’s mother filed a complaint
with the Orange County Transportation
Authority, which was investigating the
28 1/1/15 Gloucester,
A girl with autism was left harnessed into her seat on a
school bus, overlooked by the bus driver, aide, and school
principal when the rest of the children got off the bus at
school. The bus was then parked in a parking lot at a
different school in below-freezing temperatures. At
10:30am, the girl was discovered but did not get
immediate medical treatment, and her family was not
immediately notified. Instead, according to the police, the
girl sat in the school transportation office for an hour and
then evaluated by the school nurse. The police reported
that the principal then asked the school nurse to change
the time her report to an hour earlier.
The Gloucester Public School District
superintendent declined to comment
because of the sensitivity of the
matter. The bus driver and aide were
put on administrative leave, pending
an investigation by the school district.
The District Transportation Director
reports that they were later fired. After
investigating the incident, the District
Attorney’s office confirmed that no
criminal charges were made. The
family sued the City of Gloucester and
Gloucester School District for $1
29 1/26/15 Norfolk, VA 17 y/o A young man with “severe” autism was allowed off of the
school bus at home when no adult was present to meet
him, despite school protocol that special needs students
are not to be allowed off the bus unless someone is there
waiting for them. The young man walked to his great-
The young man’s mother was told that
the bus driver would be assigned to a
different route, but the next day, the
same driver dropped the young man
off. The following day, there was a
Date Location Age Description Outcome
grandmother’s house, almost 4 miles, crossing several busy
streets. His mother, who was at work at the time, said that
her son does not have a sense of danger or know how to
safely cross streets.
30 2/24/15 Fulton
12 y/o A boy with autism and asthma was left on a school bus for
2.5 hours in cold weather. He fell asleep on the bus on the
way to school, and the driver failed to check the bus at the
end of the route. When the boy woke up, he was alone on
the parked bus and was confused and cold. He took video
with his cell phone before getting off the bus, when he was
discovered by a transportation worker. His grandmother
was contacted at 11:15am and took him to the hospital,
concerned about the effects of the cold weather on his
The Fullerton County School District
fired the bus driver.
31 5/1/15 Daly City, CA 9 y/o When a boy with autism was riding a school bus, the driver
instructed him to move to the front of the bus. When he
refused, the driver grabbed him by the hood of his jacket,
pushed him down, then grabbed him again and pushed
him into a seat. When the boy’s grandmother met him at
the bus stop, he seemed afraid. The boy’s father requested
to see the bus video, but the San Mateo County School
District, police, district attorney, and private bus company
Durham School Services denied his request. The father
contacted a local news station. With pressure from the
news reporters, Durham School Services allowed the father
to view the video. The father considered the driver’s
actions toward his son to be abusive. The San Mateo
County District Attorney’s office said that the investigation
was difficult because the boy would or could not tell
investigators what happened. However, the boy told the
news team that he does not like sitting in the front of the
bus with the girls; he wants to sit at the back with his
The Durham School Services private
bus company fired the driver. The San
Mateo County District Attorney’s office
determined that the driver’s actions,
while inappropriate, were not criminal
conduct. Five months later, after the
father viewed the video, the district
attorney agreed to the father’s request
that they “take a second look” at
whether criminal charges should be
filed, as the video that was initially
reviewed did not have sound.
Date Location Age Description Outcome
32 7/27/15 Richmond,
24 y/o A man with autism was left inside a GRTC Care Van for five
hours in 87-degree weather. The man was supposed to be
transported from his group home to an adult day services
program, but he fell asleep on the way. The driver failed to
check the van for remaining passengers and left the van
parked in a Greater Richmond Transit Company (GRTC)
parking lot. The day services program called the man’s
mother when he did not show up. She tried to contact
GRTC and was told by MV Transportation, the private
company contracted by GRTC to provide drivers and
dispatchers, that the transportation log could not be
checked because the dispatcher was on break. The mother
then contacted the police. The man was found when
another driver was preparing to use the van. When the
man was discovered, the driver took him to his group
home rather than to receive medical attention. He later
received medical treatment for low blood pressure and
The private bus company MV
Transportation said that protocol was
not followed and that the driver and
dispatcher were suspended. GRTC
spokesperson said that they were
working closely with MV
Transportation in investigating the
33 7/29/15 Gilbert, AZ 6 y/o A boy with autism was mistakenly put on a school bus
instead of being sent to an after-school program on his
campus. He was let off of the bus in his neighborhood in
100+ degree heat. An hour after school ended, the after-
school program called the boy’s mother, wondering where
he was. The mother left work to search for her son in his
neighborhood. In the meantime, the family’s neighbor, a
DPS officer, saw the boy wandering around the
neighborhood, picked him up, and called his mother. The
mother reports that when she spoke to the person working
at the front desk at the school, she was “waived off” and
told that it was the boy’s fault. The mother contacted a
local news station and emailed the Higley Unified School
The Higley Unified School District
issued a statement saying that they
were in close communication with all
parties to ensure the situation was
Date Location Age Description Outcome
34 9/3/15 Lake
5 y/o A boy with autism was taken on his school bus to the
wrong elementary school, 12 miles from the school where
he was supposed to be dropped off. When the bus initially
stopped at his school, he did not get off. While the bus
monitor was helping another student, the driver allowed
other students to board the bus, and the boy went
unnoticed. Two hours later, the boy’s parents found out
that their son had not arrived at his school.
The principal promised to institute a
two check system, first by the bus
monitor and then by a teacher
assistant who will board the bus to
double check that no children
remained on the bus.
35 9/11/15 Whittier, CA 19 y/o A “nonverbal” young man with autism was found dead in
the aisle of a hot school bus parked in a Whittier Unified
School District parking lot. He took the bus from home to
school that morning, where he attended a transition
program. His parents believe that he stayed on the bus
because there was a substitute driver, and the usual driver
always gave the young man a specific verbal cue to get off
the bus (“Let’s go, [name]!”). The young man stayed on the
bus all day, in almost 100-degree heat. When he did not
arrive home at 4:00, his mother called the school, which
called the private bus company, Pupil Transportation
Cooperative. A driver went to the bus yard and found the
young man slumped in the aisle, alone and unresponsive.
The family questioned how their son, 5’11” and 300 lbs.,
could be overlooked, especially on a bus that only
transported 4 students.
The driver was held for questioning
and later released. The Whittier
Unified School District claimed that
protocols, such as doing head counts
and checking the bus for remaining
students, are ultimately the
responsibility of the private bus
company, Pupil Transportation
Cooperative. The bus company
reported that they were in the process
of reviewing their protocols. The family
filed a lawsuit against both the district
and bus company, both of which
denied responsibility. Five months
later, in a discovery document, Pupil
Transportation Cooperative admitted
that the driver was responsible for the
young man’s death and thus the
company was partially liable. Pupil
Transportation Cooperative also
claimed that Whittier School District
was partially liable, as they failed to
“receive him” when the bus arrived at
the school. A spokesperson from the
bus company said that a “Child Check-
Mate” system was being installed in
buses to require drivers to swipe a
Date Location Age Description Outcome
device in the back of the bus before
36 9/18/15 Staten
5 y/o A boy with autism was on a school bus that went ‘missing’
for five hours while the driver and matron were lost. It was
the boy’s first day to take the bus. When he did not arrive
home, his mother called the New York Department of
Education and was repeatedly told the bus would arrive in
20 more minutes. No one knew where the bus was. The
mother said that her son does not want to get back on the
The mother reports that neither the
New York City Department of
Education nor the private Reliant Bus
Company apologized or gave her an
37 9/18/15 Paterson, NJ 8 y/o A boy with autism was left alone outside his house,
dropped off by the school bus driver without an adult to
meet him, 15 minutes before the scheduled drop-off time.
When his mother arrived home minutes later, she found
her son alone, frightened but unharmed, standing near
their house. The protocol is that drivers must keep special
needs students on the bus unless their parent is there to
The Paterson School District said that
the private bus company Mercy was
fired from that route, but they did not
say whether the company would
continue transporting Paterson School
District students on other routes. A
district spokeswoman referred the
reporter to Essex Regional Educational
Services, which was managing the
busing program under a $618,000
contract, hired after a series of
problematic busing incidents involving
special needs students. The
spokeswoman said that the Paterson
School District had previously
expressed concerns to Essex about the
Mercy Bus Company.
38 10/15/15 Linden, NJ 12 y/o A boy with autism was bullied on a school bus. Other
students made fun of his new basketball shoes, called him
names, punched him, broke his glasses, and gave him a
split lip and bruises. Linden Fire Department EMTs treated
the boy for injuries then drove him home. They then
surprised the boy at his home with new basketball shoes, a
t-shirt, socks, and a wooden American flag.
The boy’s mother said he had been
bullied on the bus before, and that the
firefighters had helped to turn
something negative into something
positive. The boy told reporters that he
wanted to be a firefighter when he
Date Location Age Description Outcome
39 10/22/15 Middlesex,
6 y/o A boy with autism was left on a school bus for more than 7
hours. That morning, the bus picked him up, but he was
never helped off of the bus when it arrived at school. The
driver returned the bus to the Barker Bus Company bus
yard, where it remained parked for the day with the boy
inside. Another driver found the boy 7 hours later when
boarding the bus for the afternoon route. The driver
alerted the Barker Company owners, and the child was
returned to school at 4:00pm, where the school nurse
The Edison School Superintendent
reportedly contacted the
prosecutor’s office about the
incident. The driver and aide were
charged with endangering the
welfare of a child. A spokeswoman
for the Barker Bus Company declined
comment. The company will no
longer service that bus route.
40 11/20/15 Bibb County,
6 y/o A “nonverbal” boy with autism was physically abused by a
school bus monitor. The bus monitor dragged the boy by
the legs, shouted at him, grabbed him by his foot and
hand, and carried him across the road and dropped him in
the grass. The boy typically took the bus from school to
afternoon daycare, and the daycare workers had
previously alerted his mother that they suspected abuse by
the bus monitor. The mother arrived early and secretly
took cell phone video, which shows the abuse. The mother
showed the video to the Bibb County Sheriff’s Office, but
they sent her to the board of education police.
The Bibb County School District said
that they were investigating and that
the monitor was put on administrative
41 1/29/16 Lantana, FL 9 y/o A boy with autism was asleep on a charter bus that had
just returned from a school field trip. The driver drove off
without checking the bus for remaining students. The boy’s
parents were at the school waiting to pick him up. The
parents and principal realized what had happened just as
the bus was driving off. The boy’s father quickly drove after
the bus, stopped it, and retrieved his son.
The principal said that the driver did
not follow protocol. The Palm Beach
County School District said that the
driver was facing disciplinary action
from the private Academy Bus
Company, which declined to comment.
Conclusion and Implications
I've always felt that it is impossible to engage properly with a place or a person
without engaging with all of the stories of that place and that person.
--Chimamanda Ngozi Adichie, The Danger of a Single Story
This critical ethnographic study aims to contribute to the current ‘critical
moment’ in occupational science, in which scholars are using a diverse set of
theoretical approaches and methodologies to situate occupation in relation to power
and uncover hidden assumptions and commonsense understandings that play a role in
maintaining unequal power relations (Farias & Laliberte Rudman, 2016). This research
aims to align with critical approaches in occupational science by situating the
experiences of the Latino parents in the study within a broader sociocultural, political
economic context, showing how discursive ideologies influence their experiences of
managing their children’s autism services. In presenting the “multiple stories” (Adichie,
2009) of Latino families’ experiences of their children’s autism services, this research
aims to disrupt stereotypes and assumptions that could influence how professionals,
administrators, researchers, and policymakers understand and engage with Latino
parents of children with autism.
Manuscript 1: ‘Doing Family’
The findings of Manuscript 1 provide a more nuanced understanding of
population-level statistics of autism service disparities in California (Zarembo, 2011;
see also Broder-Fingert, Shui, Pulcini, Kurowski, & Perrin, 2013; Liptak et al., 2008;
Magaña et al., 2012; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). An
Adichie, C. N. (2009). The danger of a single story. Retrieved February 16, 2016, from
institutional assumption that lower rates of participation of Latino children with
autism in “evidence-based” interventions such as applied behavior analysis (ABA) are
due to their parents’ lack of knowledge about the benefits of ABA will influence how
the state attempts to remediate the problem. The California DDS has already begun to
try to address the problem of disparities in autism services. The Taskforce on Equity
and Diversity for Regional Center Autism Services was organized by the California
Senate Select Committee on Autism and Related Disorders in 2012 to determine how
to provide “culturally and linguistically competent services” that will enable “fair and
equal access to regional center services for families and consumers with autism
spectrum disorders (ASD)” (Vismara et al., 2013, p. 2). The Taskforce, which was
initiated in response to the Los Angeles Times article (Zarembo, 2011) that reported
racial and ethnic disparities in the California regional center system, reported that
“person-centered planning” necessitates “flexibility” and “creativity” (Vismara et al.,
2013, p. 17).
While these recommendations appear in some ways to be relevant to the
findings of Manuscript 1, the term “consumer” suggests that the service delivery model
aligns with a pattern of global neoliberal-influenced “healthcare reform,” in which
patients are increasingly seen as consumers of goods (Tritter, Koivusalo, Ollila, &
Dorfman, 2010). As “person-centered planning” is implemented for regional center
“consumers,” a question to be asked is how flexible and creative service delivery
models can be when still subsumed under a system guided by market rationality, in
which families are viewed as consumers, treated as “self-interested individual[s]
embedded primarily in economic relationships” (Brennan, Cass, Himmelweit, &
Szebehely, 2012, p. 378).
Part of this push toward “consumerism” in healthcare is a “choice agenda”
(Tritter et al., 2010, p. 5-6; see also Brennan et al., 2012; McGregor, 2001).
Anthropologist Annemarie Mol (2008) critically analyzed the increased emphasis on
patient choice in healthcare in her ethnographic study of people in the Netherlands
being treated for and living with diabetes. Mol argues that when patient choice is
‘generalized’ to all aspects of healthcare delivery, what suffers is patient care,
particularly when activities of ‘curing’ are distinguished from activities of ‘caring.’ She
points out that for chronic diseases, cure and care are not entirely different, as
individuals cannot be cured but must learn to live with the disease. “A so-called cure of
such [chronic] conditions does not lead to recovery but instead makes life more
bearable: It is a form of care” (Mol, 2008, p. 1). Mol argues that just because patients
have a greater number of choices about their healthcare, these choices will not
necessarily map onto the contours of their daily lives, improving their lives as lived
with the disease. Rather, she argues, for patients living with a disease, traditions and
practices of care will better support them.
In the case of Latino families who are ‘doing family’ with a child with autism, the
questions raised by Mol (2008) are important ones to consider. The parents in the
study were limited in the kind of behavior services they could receive for their children
because of increasing emphasis on ‘evidence-based’ service provision (Gordon, 2006).
However, research has found that parents of children with autism may face an
overwhelming number of choices about their children’s autism treatment (Valentine,
2010). “Parents are nonetheless placed in the paradoxical situation of being asked to
make choices about treatment even in the context of limited availability of services”
(Valentine, 2010, p. 953). Mol’s (2008) findings lead one to question whether greater
choice would truly support their daily efforts to ‘do family.’ What would a ‘logic of care’
(Mol, 2008; see also Barnes, 2012) look like in the case of these families, and what kind
of support from the state would best aide families in facilitating their children’s
development while also supporting their capability (Sen, 1999) to ‘do family?’
Returning to the story from the Prologue with Fabiana and her children at Target, it is
clear that the family’s need for support lay in the everyday challenges of keeping their
children with autism safe and supporting their development within the ebb and flow of
family life. If social policy is “a means by which a society protects and enhances human
life and dignity” (McGregor, 2001, p. 82), what kind of social policy promotes
flourishing for the child, in the context of her family (Segal & Frank, 1998; Segal,
2004)? An occupational analysis of family life could aide in further examination of
Manuscript 2: “You Have to be Ready for Battle”
The findings of Manuscript 2 reveal ways that some of the Latino parents in the
study acted in line with the ‘autism parent’ paradigm, and describe the reasons that
other parents chose not to, aiming to disrupt stereotypes about Latino parents as
unaware or passive. A question of greater concern, however, is why parents felt forced
to fight for publicly available services in the first place. This critical question comes
from some of the parents themselves. As quoted in Manuscript 2, parents like Fabiana,
Elizabeth, Sofia and Daniel, and Sabine and Kyle essentially ask, ‘Why does it have to be
this way?’ Fabiana said:
We were ready to pay a lawyer. Why do we have to get lawyers involved?
Why do we have to get advocates involved? Why do we even have to tell the
special education director?
In Manuscript 2, I address these questions in the context of neoliberal policies
and practices, not only in healthcare or regional center service delivery but also the
public education system in the U.S. (Apple, 2004; Douglas, 2010). This creates the
conditions of austerity that parents encountered, including decreasing funding for
But neoliberal rationality shaped the parents’ experiences with school services
in other ways, too. The parents faced a dilemma in being expected to aggressively
‘fight’ for the support they felt their child needed at school, while also making sure that
the child ‘liked’ enough to be treated well. In the 1980s, there was a shift in the public
education system “from legislation and policies based upon principles of equity, social
progress and altruism, to new legislation underpinned by a market-place philosophy
based on principles of academic excellence, choice and competition” (Rouse & Florian,
1997, p. 324). The dilemma the parents faced is rooted in conflicting logics of
competition and care (e.g., Brennan et al., 2012; Mol, 2008). This perspective gives
deeper dimensions to previous findings that parents of children with disabilities want
to know that the professionals who work with their children ‘like’ the children (Lawlor
& Mattingly, 1998). The Latino parents in the study also wanted to know that
professionals ‘liked’ their children, but this was challenging to achieve in the face of the
mandate to aggressively ‘fight’ to prove their children to be ‘service-worthy’ (Hansen,
Bourgois, & Drucker, 2014; Marvasti, 2002), behavior that they feared would lead
professionals to, even if unconsciously, like their children less.
This tension is similar to Angell and Solomon’s (2014) findings that African
American parents of children with autism faced an imperative to appear ‘professional’
with regards to their children’s autism services at school. From their ethnographic
data, Angell and Solomon described a mother in the study who had learned that to be
taken seriously by school district staff and officials, her written request to call an IEP
for her child must be in the form of a formal, typed letter. The mother recalled the way
that she had previously requested an IEP via a handwritten note, scrawled in red ink
on a scrap of paper as she sat on a bench outside her son’s school. The contrasting
images, of a typed, formal letter folded neatly into a crisp envelope, versus a
handwritten note on a crumpled scrap of paper, perhaps pulled from the bottom of a
mother’s purse or jotted down on the back of a grocery list, are powerful symbols of
these competing logics of competition and care. The handwritten note could be viewed
as the personal and intimate communication between a mother and teacher, and it
echoes the Latino parents’ priotity of ensuring that their children were well cared for.
Numerous examples from the data reveal this logic of care from which parents
operated, like Sabine wondering if school staff helped her son Jayden to open his lunch
containers or noticed how much he ate; Fabiana’s distress when she witnessed Mateo
Jr.’s teacher mis-read a situation and wrongly blamed him for being pushing into
another child; Nicole’s outrage that Rafael Jr.’s teachers put his underwear on inside his
diaper, a perhaps absent-minded action that left him with a diaper rash; or Sarah
wondering if her daughter Gabriela’s preschool was ‘kicking her out’ because they
‘wanted to get rid of her.’
These examples of parents’ fears that their children were not being well cared
for are not intended to represent all of their experineces. Indeed, there were also
stories of children being cared for in a personal way, like Olivia’s teachers who did not
object to and even delighted in her desire to wear puffy pink princess dresses and
tiaras to school every day; the aides in Rafael Jr.’s classroom fostering “aunt-like”
relationships with him, creating a nurturing enviornment where his parents felt that he
“thrived;” Gabriela’s preschool teachers gently trying to translate her ‘odd’ behavior to
her typically developing classmates in order to encourage them to engage with her;
and the occupational therapist who ‘saw something’ in Danny and helped to secure a
one-to-one aide for him at school so that he would not get “lost in the system.” Both
kinds of stories mark the practices of care that the parents hoped would guide
professionals’ behavior and relationships with their children. The analysis of
Manuscript 2 shows the conflicting values of care and competition that parents faced,
and how market logic shaped the competitive, adversarial mandate of the ‘autism
Manuscript 3: School Bus Stories
Manuscript 3 presents an urgent and potentially life-threatening issue for
children with autism. It aims to show, from the perspectives of parents, the ways that
the cultural imperative for ‘independence’ can be in conflict with parents’ sense that
their child is safe. The ‘independence’ discourse, as I argued in Manuscript 3, in
practice supported a neoliberal imperative to reduce or limit service provision. As
argued by the parents, safety and independence are not mutually exclusive, and
solutions to problems around children’s safety on school buses need to attend to both.
The issues of responsibility and accountability in the case of children with autism
being endangered on school transportation vehicles intersect with the current political
economic climate. School districts and bus companies, fearing lawsuits after incidents such
as those in Table 2, appeared in many news stories to attempt to shirk blame. While
courtrooms may determine that bus companies are liable in specific cases, according to
educators Mathis and Jimerson (2008), school districts are ultimately responsible for the
safety of their students. As I argued in Manuscript 3, the privatized school transportation
model may contribute to the problems detailed in Table 2 by enabling school district
officials to evade blame, or even to sincerely believe that they are not responsible for
incidents that occur to their students while they are under the care of private companies
contracted with the school district.
Of course, public school districts that employ their own drivers will not necessarily
or automatically provide them with adequate training; however, school district officials
have a vested interest in upholding the reputation of the school district in their community.
Social policy scholar Brennan and colleagues (2012) argue that with the marketization of
care, wherein for-profit providers are inserted into ‘care’ sectors previously or originally
intended for non-profits, there is a risk that quality will suffer. “For a commodity such as
care, whose quality is hard to assess without direct experience, non-profits are likely to be
more trusted to use higher fees to produce higher quality” (Brennan et al., 2010, p. 380).
As is evident in both the data and the news stories, the vulnerability of children with
autism necessitates school transportation service delivery that is grounded in an ethics of
care (Barnes, 2012), and ‘commodified’ care under privatized transportation models is
questionable as a means of ensuring that children are transported and cared for.
Solomon and Lawlor’s (2013) account of African American mothers’ narratives of
the “wandering” and “elopement” of their children with autism serves as a cautionary tale
for the current situation regarding school transportation for children with autism. In their
analysis of mother’s narrative accounts of elopement and wandering, Solomon and Lawlor
warn of the potential consequences when institutions evade responsibility for addressing
the wandering of children with autism: “The health care and the autism services systems
have been reticent to claim the problem as their responsibility while the law enforcement
has been fully engaged with it (Hall, Godwin, Wright & Abramson, 2007)” (Solomon &
Lawlor, 2013, p. 112). In Maryland in 2012, an 11-year-old boy with autism was handcuffed
by police on his school bus ride home (see Table 2, source 12). The boy had escaped from
his seat belt and bit the driver, aide, and other students. Unable to manage his behavior, the
driver called the police, who kept the boy handcuffed for the remainder of the ride home.
African American and Latino boys and young men with autism are situated at the
intersection of multiple marginalized identities (Hancock, 2004; Hill Collins, 2000; Solomon
& Lawlor, 2013), making their behavior, including autism-related behavior challenges,
vulnerable to stereotypes and assumptions, e.g., their behavior could be viewed as ‘violent’
and addressed punitively, or it could be seen as an ‘autism-related behavior challenge’ and
be de-escalated by trained professionals. When institutions and systems of care fail to step
forward to claim responsibility for supporting children with autism as they travel on school
buses or ‘wander’ away from their homes or schools, law enforcement may be the only
institution to take responsibility (Solomon & Lawlor, 2013). How well police officers are
trained to “de-escalate” situations with individuals with developmental disabilities or
mental illness has been a topic of much recent debate in the U.S. Laura Usher, Crisis
Intervention Training (CIT) program manager at the National Alliance on Mental Illness
(NAMI) headquarters told an Atlantic reporter that in most cases, law enforcement
agencies train only a few specialized officers to deal with crisis issues rather than having
mandatory mental health training for all officers (Pauly, 2013). In March 2016, the Los
Angeles Times reported that more than a third of all people shot by Los Angeles police last
year had documented signs of mental illness, according to a review conducted by the Los
Angeles Police Department (Mather & Queally, 2016). Because law enforcement officers
may become involved in incidents involving children and young adults with autism on
school transportation, but may not be well-trained to de-escalate such situations, this
pressing public health and public policy issue is even more urgent.
Managing Autism Services as an Issue Relevant to Occupational Justice
The three manuscripts of this dissertation document the challenges parents faced
when trying to manage their children’s autism services within the context of ‘doing family.’
As captured through the narrative phenomenology framework and ethnographic approach
(Mattingly, 2010), I have argued that this occupation is often invisible; requires a
significant amount of work, skill acquisition, and dedication from parents; and is carried
out within the flow of family life and therefore must align with the contours of family
routines, patterns, and activities. I argue, along with Magasi, (2012), that occupations such
as navigating systems of care and managing services are of great importance in the lives of
individuals with disabilities and their families and often support their occupational and
community participation. Therefore, barriers to accessing services, or challenges that
individuals or families face in managing publicly funded services, are problems that are
relevant to the concerns of occupational justice (Durocher, Gibson, et al., 2013; Whiteford &
In putting parents’ experiences of their children’s autism services as the focal point
of this analysis (Mattingly, 2010), this occupation was central to parents’ hoped-for futures
for their children. Parents viewed their children’s autism services as holding the potential
to support the children’s developmental trajectory to lead ‘successful,’ independent,
fulfilling lives. The work carried out by parents was always driven by the desire to create a
‘good life’ for their children, both now and in the years to come.
Further, as was shown by the critical analyses of discourses that shape parents’
experiences of their children’s autism services, systems of care that provide funding for
children with autism must grapple with the ways in which services for children always flow
through the family (Segal & Frank, 1998; Segal, 2004). Such a critical analysis is important
for uncovering assumptions embedded in service delivery models, including public
education, that have increasingly mapped neoliberal rationality onto the delivery of care
(Brennan et al., 2012; Mol, 2008; see also Apple, 2004; McGregor, 2001). A critical
approach is important for understanding service disparities so that access to services alone
is not taken for granted as the solution to the problem of disparities (see Manuscript 1).
Instead, a critical occupational science perspective on service disparities can investigate
how service delivery models are influenced by market logic, how this affects families’ and
individuals’ daily lives, and how systems of care embedded in traditions and a ‘logic of care’
(Mol, 2008; see also Brennan et al., 2012) could better address families’ and individual’s
The three manuscripts that make up this dissertation address social discourses
about Latino parents of children with autism, aiming to deconstruct the taken-for-granted,
uncover operations of power behind supposedly neutral assumptions, and link everyday
experience to political economy. The aim of this critical approach is to produce “really
useful knowledge,” “from a standpoint which implicates us in moral questions about
desirable forms of social relations and ways of living” (Jordan & Yeomans, 1995, p. 196). In
these three analyses, my aim has been to raise questions about wellbeing and human
flourishing (Nussbaum, 2002; Sen, 1999), questions that occupational science is well-suited
to address (Frank, 2012), from the vantage point of family experience (e.g., Lawlor, 2003).
Social theorist Andrew Sayer (2009) argues that too often, critical approaches
merely deconstruct but do not take an evaluative stance. In other words, to simply state
that “things could be different,” but evade making normative claims, is to risk cultural
relativism and fail to address human flourishing. Sayer (2009) claims that it is customary in
the social sciences to declare “freedom,” or “emancipation,” as the basis of a critical
approach. An unexamined standpoint of “freedom,” however, could in truth reflect an
individualistic, neoliberal ideology, because in human experience, constraint is not always
the opposite of freedom. As is evident in Manuscript 3, ‘constraint’ in the form of
“dependency relationships” (Kittay, 1998a, 1998b, 1999), or responsibility toward others,
often enhances our lives.
There are multiple ways of flourishing, and the multiple stories and experiences of
the families in the study reflect this. The narratives of the Latino families in this study,
however, and critical analysis of the discourses that they encountered in their engagement
with systems of care, point to values of care and interdependency. As these analyses have
shown, ‘the good life’ is found not in complete freedom or independence but in a balance of
independence and interdependence, and in responsibility toward and care for one another.
This is visible in the ways that the Latino parents in the study prioritized the needs of the
entire family (Manuscript 1); critiqued of systems of care that required a ‘fight’ rather than
collaboration (Manuscript 2); and insisted on school professionals’ acknowledgement of
children’s interdependence (Manuscript 3).
Anthropologist and social theorist Sherry Ortner (2006) writes, “Social
transformation works in part through the constant production, contestation, and
transformation of public culture, of media and other representations of all kinds,
embodying and seeking to shape old and new thoughts, feelings, and ideologies” (Ortner,
2006, p. 18). In presenting Latino families’ multiple stories, and placing emphasis on
stereotypes, assumptions, and institutional and media depictions of Latino families of
children with autism, this critical ethnographic study aims to highlight and contribute to
the ways that the parents themselves embody, embrace, resist, defy, alter, and transform
their social and cultural identities, in their quest for services that will prepare their
children to live a ‘good life.’
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Phase 1 Interview Guides
Interview Guide 1: Parent/Caregiver
Please tell me about (child’s name).
Can you tell me the story of when you first noticed that (child’s name) might have a
o How old was he/she?
o What concerns did you have, and why?
o Did other (family members, friends, neighbors, teachers, or someone else)
have concerns? What were their concerns? How did you respond to them?
o Do you remember what you were thinking/feeling at that time?
Can you tell me the story about when (child’s name) was diagnosed?
o How old was s/he?
o When and where did your child receive a diagnosis?
o Who gave him/her the diagnosis?
o Can you remember which tests they used?
o Take me through the process; what was it like for you?
o How did (child’s name) respond during the process? What do you think it
was like for him/her?
Please tell me about the services (child’s name) received initially.
o What services or interventions were recommended?
o What did you think of the services?
o How did (child’s name) respond to them?
Please tell me about the services (child’s name) is receiving now.
o How did he/she come to get these services?
What concerns about (child’s name) do you have now?
Interview Guide 2: Parent/Caregiver
I’ve drawn this timeline according to the stories you told me during the first
interview, as I understood them. Could you walk me through this?
o Please correct or clarify anything. Here are pens and pencils so we can write
in whatever we want to.
o I’d like us to add as much to it as we can. If anything jogs your memory to tell
another story, please feel free to share.
Five timelines were chosen to represent a range of experiences. All names and initials are
pseudonyms, and all dates have been removed to maintain strict confidentiality. The
timelines are presented in landscape view for clarity, starting on the following page.
Figure B1: Timeline Key
Figure B2: Timeline for Ben
Figure B3: Timeline for Gabriela
Figure B4: Timeline for Jayden
Figure B5: Timeline for Mateo Jr.
Figure B6: Timeline for Tanok
There is a lack of agreement regarding the most appropriate terminology for people of
Latin American or Hispanic descent living in the United States. The U.S. government
frequently uses the term “Hispanic” (Alcoff, 2005), such as in the Centers for Disease
Control and Prevention (2014) autism prevalence report and historically in the U.S. Census,
which only began using “Latino” alongside “Hispanic” in 2000 (Guzman, 2001; Humes,
Jones, & Ramirez, 2011). The use of “Hispanic” by the U.S. government emphasizes culture
or language rather than nationality, which de-emphasizes colonial histories and de-links
individuals from Latin American countries living in the United States to their countries of
origin (Alcoff, 2005). Alcoff (2005) argues that this terminological choice serves, even if
unintentionally, to benefit the U.S. government during U.S. military invasions of Latin
American countries. In using the term “Latino,” I refer to individuals living in the United
States who have familial origins from a Latin American country, despite ethnicity (Hispanic
or non-Hispanic) or race, as this describes the vast majority of people in the United States
who originated from Spanish-speaking countries (Hayes-Bautista & Chapa, 2002). The
choice of “Latino” also preserves histories of political relationships between the United
States and Latin America and acknowledges the relevance of colonial histories for the
present experiences of Latinos in the United States (Alcoff, 2005).
The phrase “systems of care” refers here to the public school system and the state
regional center system. The latter is made up of 21 nonprofit agencies that provide case
management for individuals with disabilities who live in each regional center’s catchment
area, funded by the California Department of Developmental Services. These systems of
care funded the majority of services that the children in this study received. Although such
systems typically provide children with autism with interventions that have biomedical
origins, such as physical, occupational, and speech therapies, the therapies take place in
educational, rather than medical, settings, which can be viewed as ‘clinicalizing’ autism
education (Hodgetts et al., 2013; National Research Council, 2001). California followed a
number of other states in 2012 to pass SB 946, a law which requires medical insurance
companies to cover certain autism treatments like behavior therapy (Autism Speaks, 2016;
California Senate, 2011), but only a few of the study participants received behavior therapy
through their medical insurance. Most of the families’ stories of “battles” were with school
districts, their primary (and in some cases only) means of obtaining therapies and
interventions for their children.
The news stories in Table 2 were systematically gathered via an online search using a
combination of terms (i.e., autism, developmental disability, school bus, bus, public transit,
public transportation). Initially, 63 news stories of incidents involving the transportation of
individuals with autism or other developmental disabilities were identified. After
eliminating stories outside of the United States, eliminating duplicate stories, combining
related incidents (see item 10 in the table), and selecting the most reputable media sources
available (e.g., local news websites), the final search yielded 41 stories. Of these, three
stories (7%) involve public transit or paratransit services, while 93% involve students on
school buses. The majority of the stories (95%) involve individuals under the age of 20. The
majority of the stories (83%) occurred in the past five years. There was a marked increase
in the number of reports since 2008, while no stories dated before 2003 were identified.
While this may not indicate a true increase in these incidents (e.g., other potential
contributing factors are increasing news media Internet presence and changes in
documenting and reporting of school transportation related incidents), it nevertheless
indicates a recent increase in public awareness of such incidents and constitutes an urgent
safety issue for children and young adults with autism and other developmental
University of Southern California Dissertations and Theses
Unpacking experiences and narratives: life changing, changing life, or merely taking a trip
Mothers’ perspectives on everyday life with children with autism: Mealtimes explored
An ethnographic study of men fathering children with disabilities
Machos y malinchistas: Chicano/Latino gang narratives, masculinity, & affect
Developmental trajectories of sensory patterns in young children with and without autism spectrum disorder: a longitudinal population-based study from infancy to school age
Historically Latino/a-based fraternities/sororities: understanding Latino/a student experiences in a historically White-dominated system
Acculturation team-based clinical program: pilot program to address acculturative stress and mental health in the Latino community
The psychosociocultural model as it relates to Latino/a college students and their academic success: a literature review
The role of critical literacy and the school-to-prison pipeline: what was learned from the life histories and literacy experiences of formerly incarcerated young Latino males
The role of protective factors on outcomes for Latinos with schizophrenia
Immigrated Latino/a students' general education teachers' mind frames and pedagogy
Occupation in the lives of adults with schizophrenia: creations of hope
Immigrants at a loss: the need for services that promote child well-being among Latino families with child welfare contact
Activity engagement of young adults with autoimmune arthritis: a multi-method approach
A mixed method examination of available supports for secondary school students’ college and military aspirations
Examining Latino parents' perspective on parent involvement at the secondary level: why should we care
Administrator reflective practice to support Latino youth in Orange County public schools
Perceptions of accessing Part C early intervention services
Finding home: the migration and incorporation of undocumented, unparented Latino youth in the US
Seeking difference: Latino-White relations in a Los Angeles bilingual school
Understanding bilingual Latino parents’ experiences of their children’s autism services in Los Angeles: a critical ethnography
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