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Examining the challenges faced by parents of children with autism in their advocacy efforts: a field study

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Examining the challenges faced by parents of children with autism in their advocacy efforts: a field study

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Content Examining the Challenges Faced by
Parents of Children with Autism in Their Advocacy Efforts:
A Field Study
Alexandria Bravo
Rossier School of Education
University of Southern California
A dissertation submitted to the faculty
in partial fulfillment of the requirements for the degree of
Doctor of Education
May 2024

© Copyright by Alexandria Bravo 2024
All Rights Reserved

The Committee for Alexandra Bravo certifies the approval of this Dissertation
Kimberly Hirabayashi, Committee Member
Patricia Tobey, Committee Member
Wayne Combs, Committee Chair
Rossier School of Education
University of Southern California
2024

iv
Abstract
This study examines the challenges and strategies involved in parental advocacy for children with
autism spectrum disorder (ASD), aiming to address gaps in knowledge, motivation, and resource
understanding. Through a comprehensive literature review, it identifies multifaceted obstacles
faced by parents, including societal stigma, time constraints, and financial limitations, while also
exploring their perceptions of advocacy roles and strategies employed. Utilizing the knowledge,
motivation and organization framework and modified gap analysis, the research sheds light on
areas where parental support and intervention are most needed, emphasizing the critical role of
healthcare professionals and organizations. Specifically focusing on parents of children under 18
with autism, the study advocates for tailored support programs and greater involvement of parents
in healthcare decision-making processes. Overall, the findings underscore the resilience and
dedication of parents in advocating for their children, while highlighting the need for
comprehensive interventions to address the unique challenges faced by families in rural areas,
ultimately aiming to enhance the well-being and outcomes of individuals with autism and their
families.

v
Acknowledgment
Being a mother has been my greatest gift. Being a mother of a child with autism has been
the greatest blessing. I dedicate this research to my firstborn son, Daniel Alexander Wing Bravo,
who was diagnosed with autism at 3 years of age. He has taught me more about life and love than
anybody ever will. I also dedicate this research to his younger brother, my youngest son, Dylan
Andrew Wing Bravo, for being the best sibling one could ever ask for. Being on this journey with
his brother and parents, quickly learned to adapt, adjust, and be compassionate without even
knowing it as a baby. He is my hero and such a blessing. To my husband, Danny Bravo, for being
my rock. Thank you for supporting my personal and professional goals and growing with me
through life. None of this would have been possible without him and his unwavering support. To
my mother, my number one cheerleader, fan, supporter and once-in-a-lifetime best friend,
Agustina Cristina Wing. The Latina homemaker who taught me to be strong and fierce and not
settle for less in any aspect of my life has taught me so much about life and leadership. To my
father, Juan J. Wing Larner, who raised me to be curious and have a love of learning, and who
called me Dr. Alexandria Wing since the day I was born. My entire life, I always wanted to make
him proud. I know this is one of those moments. My greatest motivation comes from my love for
my family and my desire to create change for our autism community. I aim to create hope and
change so that those with autism are treated as equals and included in our society. I know there is a
better future tomorrow for my boys and all the families out there, praying for a better future for
their loved ones with different abilities. We all have the power to make a difference in our
communities. I challenge everybody to #bethechange.

vi
Table of Contents
Abstract ....................................................................................................................................... iv
Acknowledgment .......................................................................................................................... v
List of Tables............................................................................................................................. viii
List of Figures.............................................................................................................................. ix
Introduction to Problem of Practice ............................................................................................... 1
Importance of Addressing the Problem.............................................................................. 1
Importance of the Evaluation............................................................................................. 2
Purpose of the Project and Research Questions.................................................................. 3
Review of the Literature................................................................................................................ 5
Historical Context.............................................................................................................. 5
Autism Prevalence ............................................................................................................ 6
The Role of Parental Advocacy ......................................................................................... 7
Knowledge, Motivation, and Organizational Influences................................................... 15
Theoretical Framework.................................................................................................... 22
Instrumentation and Data Collection ........................................................................................... 24
Instrumentation................................................................................................................ 24
Data Collection Procedures.............................................................................................. 28
Findings...................................................................................................................................... 31
Knowledge Influences..................................................................................................... 31
Motivation Influences...................................................................................................... 34
Organizational Influences................................................................................................ 37
Solutions and Recommendations................................................................................................. 42

vii
Knowledge Recommendations......................................................................................... 43
Motivation Recommendations ......................................................................................... 45
Organizational Recommendations ................................................................................... 47
Limitations and Delimitations.......................................................................................... 51
Recommendations for Future Research............................................................................ 52
Ethical Considerations..................................................................................................... 54
Conclusion ...................................................................................................................... 55
References .................................................................................................................................. 58
Appendix A: Interview Protocols................................................................................................ 71

viii
List of Tables
Table 1: Knowledge Influences................................................................................................... 16
Table 2: Motivation Influences.................................................................................................... 18
Table 3: Organizational Influences.............................................................................................. 21
Table 4: Participants.................................................................................................................... 29
Table 5: Summary of Knowledge Influences and Recommendations........................................... 44
Table 6: Summary of Motivation Influences and Recommendations............................................ 46
Table 7: Summary of Organizational Influences and Recommendations...................................... 48

ix
List of Figures
Figure 1: Conceptual Framework ................................................................................................ 23

1
Introduction to Problem of Practice
Autism, or autism spectrum disorder (ASD), is a broad range of conditions characterized by
challenges with social skills, repetitive behaviors, speech, and nonverbal communication (Autism
Speaks [AS], 2021). Autism impacts approximately 1 in 44 children across the United States
today, according to the Centers for Disease Control and Prevention (CDC, 2022). According to
research by Francis et al. (2021), while there is no cure for autism, early intervention for
individuals with autism is critical. Early intervention aids in attaining positive outcomes later in the
lifetime of individuals with autism. The problem of practice for this study is the challenges parents
face when advocating for their child with autism. The absence of appropriate strategies and tools
can hinder the implementation of early intervention and support for children with autism (Sapiets
et al., 2021), potentially limiting their developmental trajectories and overall well-being.
Importance of Addressing the Problem
To ensure children with autism obtain the proper diagnosis and services, parents must
provide their perceptions of their child’s health conditions to health professionals (Locke et al.,
2020). Parents who have children with autism face a variety of challenges, such as social
stigmatization for having autistic children, the time commitment of parenting and inadequate
support (Shattnawi et al., 2021). A study by Shahzadi et al. (2023) found that having a child with
autism resulted in parents feeling isolated because of society’s lack of understanding and support.
There are a variety of ways families with a child with autism are impacted, including marital,
social, financial and sibling relationships (Sherifi, 2021). Difficulties with marriage can lead to a
divorce and higher levels of stress that can impact a parent’s mental health (Sherifi, 2021). It was
found that parents are hesitant to advocate for their children at school due to a lack of knowledge
(Goldman et al., 2020).

2
Advocacy, according to (Ewles et al., 2014), is described in the research literature as “any
action taken by a parent on behalf of their child or other children with an autism spectrum disorder
to ensure adequate support, the proper level of care, and basic human rights.” Parents are
committed to the well-being of children with autism and are assumed to be natural advocates of
their autistic children (Ahmad, 2020). Advocating for their child also serves as a coping
mechanism (Ahmad, 2020). While many attempt to support their child, not all parents are as
effective in intervening on their children’s behalf (Ewles et al., 2014). They face and must
overcome many challenges.
Parents of autistic children rely on having advocacy skills, including knowing how to
manage difficult situations with their child and organizing clear and effective communication
(Smith et al., 2022). Factors such as education actions and skill set of parents, time commitment,
financial status, and child conditions with autism may increase or decrease the advocacy efforts of
parents over time (Ashcraft et al., 2019).
Importance of the Evaluation
ASD is a neurodevelopmental condition that presents specific obstacles and requirements
throughout individuals’ lives (AS, 2021). Parents raising kids with ASD serve as key figures,
fighting for their children’s health, schooling, and integration into broader society (Wright Stein et
al., 2022). Despite these significant attempts at advocacy, parents encounter several challenges
hindering their efforts to advocate for their children with autism.
The focus of this field study is to examine the experiences parents of children with ASD
face when advocating for their children. The problem of practice involves examining various
challenges parents of children with ASD face when supporting their parental rights. According to
Sherifi (2021), these limitations that emerge from sources as diverse as societal misunderstandings,

3
condition of the child with autism, restricted availability of means, time commitments of parents,
education and skill sets of parents and financial restrictions hinder the potential ability of parents to
ensure their children obtain the requisite care, provisions and possibilities required to achieve wellrounded growth. The stakeholders of this study include the parents of children with autism under
the age of 18 years old. Identifying and understanding these challenges assist in creating focused
treatments, guiding principles, and aid designs that encourage parents to advocate for their children
with autism.
Purpose of the Project and Research Questions
This study explores the advocacy efforts through the journey of parents of children with
autism. The research identifies the challenges parents of children with autism face and the
strategies used to address some of these challenges while advocating for their child. The study
findings identify support skills used by parents as they advocate for their child with autism.
Research has shown that while there is no cure for autism, early intervention for individuals with
autism is critical and may result in positive outcomes later in their lifetime (Leadbitter et al., 2021).
The research questions that guide the study are as follows:
1. How do parents perceive the challenges they encounter in advocating for the needs of
their children with autism?
2. What strategies do parents employ to overcome these challenges in advocating for
autistic children?
3. How do parents perceive the role of organizations (e.g. non-profit organizations,
government agencies, schools and educational institutions) when advocating for
children with autism?

4
The study applies a modified gap analysis framework to address the problem of practice
and examine the varying levels of parental knowledge, skill, motivation, and familiarity with
available organizational resources utilized in advocating for their child with autism. While many
stakeholders play a critical role in the success of autistic children, such as teachers and special
educators, therapists, medical professionals, school administrations and staff, and advocacy
groups, among others (Snell-Rood et al., 2020), this study focuses on parents of children with
autism under 18 years of age. Many social theories offer frameworks to inform studies. However,
for this research, the grassroots theory of change model suggests that individuals with the same
challenge or problem can jointly create social change by implementing specific strategies such as
creating awareness, capacity building and mobilizing (Stachowiak, 2013).

5
Review of the Literature
In 1940, autism was referred to as a severe disability (Nazeer et al., 2019). Over the past
60+ years, much activity has been related to autism and understanding why children struggle with
relationships, friendships, playing, communicating, and more (Drüsedau et al., 2023). Autism is a
neurological disorder evident in children by age (Schnabel et al., 2020). It affects males 4 to 5
times more than females. Many children with autism have limitations in IQ, have behavioral
issues, and meet the criteria for intellectual disability (Schnabel et al., 2020).
Historical Context
In 1943, Leo Kanner, a psychiatrist and physician best known for his work on autism,
described those with autism as unable to relate to themselves or others (Sterwald & Baker, 2019).
The term autism was created and originated from the root word auto meaning “self” (Bartolotta &
Rizzolo, 2019). In the current context, according to Rowland (2020), autism has been redefined by
the Diagnostic and Statistical Manual of Mental Disorders as a pervasive developmental disorder
having three classic behavioral features for its diagnosis: the presence of markedly abnormal or
impaired development in social interaction and communication and a significantly restricted range
of activity and interests.
According to Zeidan et al. (2022), ASD is complex and refers to individuals with
characteristics typical of autism. The diseases range from severe to less severe forms known as
pervasive developmental disorder/not otherwise specified (PDD-NOS) and what was referred to as
Aspergers (Tanner & Dounavi, 2021). The diagnosis of autism is not identified through a
diagnostic test, but, rather, it is based on behavioral indices (Althiabi, 2021). Children diagnosed
during preschool qualify for special education through the Individuals with Disabilities Education
Act (IDEA). It was found that the classrooms were not equipped to support the educational needs

6
of the students with autism (Al Jaffal, 2022). Individualized Education Plans (IEPs) were
inadequate, with no added benefits to the student’s academic progress. Education inequality was
one central area that sparked advocacy efforts by many guardians (Vorlíček, 2023). Healthcare
facilities did not understand the needs of autistic children, frustrating parents’ efforts to help and
enable their children.
Autism Prevalence
Various studies and data suggest that the prevalence of diagnosed autism has substantially
increased over the past decade. According to data collected by the U.S. Department of Education,
children between 6-21 years of age diagnosed with autism have increased by over 500% over the
last ten years (General Office of Accountability, 2021). Research by Papadopoulos (2021) found
that approximately 70%-80% of individuals on the spectrum continue to have social impairments
into adulthood. Children with autism find it challenging to transition into adulthood as there is a
need for services to help them with their developmental disabilities (Chun et al., 2023). They
depend on their parents to ease the way for them, and the parents also face a barrage of limitations.
Developing skills to be independent, navigate through postsecondary education, obtain
employment, and integrate into the community is critically important (Sefotho & Onyishi, 2021),
and parents struggle to ensure their children have access to the same resources as their peers.
The Health Resources Commission (HRC, 2008) emphasized that because individuals with
ASD exhibit unique characteristics, there is no universal treatment approach for all ASD patients.
Consequently, therapies are customized to suit the specific needs of each patient and their family.
The available interventions encompass various psycho-educational, speech, occupational, and
physical therapy techniques, incorporating behavioral, developmental, and educational approaches
(HRC, 2008).

7
Furthermore, Kanner (1971) observed significant variations among the children he studied
with ASD, with some displaying more pronounced symptoms and distinct disease progression
patterns. A common trait among these children was their difficulty forming social connections,
often finding solace in solitary pursuits while remaining unaware of their surroundings (Kanner,
1971). Given the diverse symptomatology associated with autism, it poses a challenge in treatment
and necessitates the utilization of multiple therapeutic approaches.
The Role of Parental Advocacy
In the pursuit of comprehending the intricacies of parental advocacy within the context of
raising children with ASD, the study explores the multifaceted journey of parents (Brown, 2022).
Offering a unique perspective, the researcher adopted a thematic approach to illuminate the
intricate pathways traversed by parents advocating for their children and youth diagnosed with
ASD (Onwukwe-Nwagwu, 2022). According to Onwukwe-Nwagwu (2022), this narrative serves
to depict the “when,” “how,” and “why” of parental advocacy efforts as parents navigate an
intricate landscape complete with challenges and supportive elements within the medical,
educational, and social domains of their children’s environment.
According to James and Smith (2020), parents are often the primary advocates for their
children across these services and programs. Research by James and Smith (2020) found that
autistic children require various health educational services and support like specialized schools
with special educators, speech and occupational therapy programs to improve communication, and
behavioral therapy interventions to promote positive interactions.
Dickinson et al. (2023) examined the challenges and strategies parents deploy in their
relentless pursuit of effective advocacy for their children with ASD. The study delved into the

8
evolving skill set that parents nurture to fortify their resolve as they embark on a lifelong advocacy
journey, steadfastly championing their children’s welfare.
The findings from Anderson et al. (2021) unveiled a dynamic portrayal of parental
advocacy, characterized by the ever-present backdrop of uncertainty. Parents navigate this
landscape by seeking assistance, acquiring essential services, and disseminating awareness.
Throughout their journey, parents persistently surmount challenges and uncertainties, harnessing
their roles as advocates to gain access to vital services within healthcare, education, and the
broader community (Cleary et al., 2023). Their aim in raising awareness was twofold: to share
personal experiences and enlighten others, thereby catalyzing advocacy for fellow parents of
children and youth diagnosed with ASD, thus fostering improved lifelong outcomes.
The findings from Pearson and Meadan, (2021) aligned with the collective body of work in
this field. It is known that parents of children with ASD, as well as those facing chronic conditions
or disabilities, employ advocacy as a coping mechanism, wielding it as a means of gaining control
amid the ever-present uncertainties. Acknowledging the hurdles they confront in their advocacy
work, this research accentuates various aspects, including the time commitments necessitated by
parenting a child with ASD, financial challenges, deficiencies in knowledge and support from
service providers and external sources, service availability limitations, bureaucratic hurdles, and
the perceived stigma associated with their child’s ASD diagnosis (Pearson & Meadan, 2021).
Furthermore, it is noteworthy that there exists an online advocacy tool tailored to parents of
children with ASD (Szlamka et al., 2022), emphasizing the significance of imparting self-advocacy
skills to both parents and children across the ASD life course.

9
Grassroots Theory of Change Model in Advocacy
Social psychology theories extend a comprehensive framework for informing advocacy and
policy alteration endeavors. The grassroots theory of change model suggests that individuals
affected by a particular issue can collectively instigate social transformation by deploying
strategies such as mobilization, training, awareness cultivation, and capacity-building (Reinholz &
Andrews, 2020). The study’s results attest to parents’ active involvement in their advocacy
endeavors, revealing how they can raise public awareness of ASD (Reinholz & Andrews, 2020).
Therefore, service providers must encourage parents’ participation in available advocacy training
programs, a key element in achieving the necessary educational and healthcare policy changes.
This study highlights parents’ challenges to pursuing effective advocacy and underscores
the importance of mitigating these challenges. Notable research in the United States investigating
advocacy training programs for parents of children with disabilities, including ASD, has revealed
substantial gains in motivation, empowerment, knowledge of special education, and legislative
rights (Rios & Burke, 2021). Studies examining volunteer advocacy projects (VAPs) also shed
light on factors influencing families’ propensity to seek an advocate, such as urban residence and
elementary school attendance. A pilot study of a particular education advocacy program targeting
Latinx-minority parents of children with ASD revealed a positive impact on parental knowledge.
Still, it did not significantly enhance self-perceptions of empowerment and advocacy (Luelmo et
al., 2021). This indicates the potential need for further support in parental advocacy.
Acknowledging the strengths and limitations of this study, it recognizes the contributions
of the thematic representation of parents’ advocacy journeys. This study enhances understanding
of the advocacy skills parents must cultivate when faced with obstacles in diagnosing and treating
their children with ASD. Nevertheless, it is essential to acknowledge that the qualitative study

10
sample was restricted to parents with children under the age of 18 with autism. These unique
demographics may qualify the generalizability of the findings.
To provide a comprehensive view of this issue, future research endeavors may explore the
experiences of service providers, policymakers, and adults with ASD, gaining insights into their
perspectives regarding the strengths and limitations of the ASD service delivery system and
strategies to bolster parental advocacy (Rios & Burke, 2021). Furthermore, potential interventions
focusing on augmenting parental advocacy, thereby boosting parents’ confidence in their advocacy
capabilities and fostering self-advocacy in adults throughout their ASD condition, warrant
consideration in future research pursuits.
Challenges to Parental Advocacy
Parental advocacy is necessary to ensure children are not left out in developmental policies
or any areas of their lives. Parental advocacy efforts have many challenges that emerge. Some
challenges to parental advocacy are outlined below.
Education and Skill Set of Parents
Parent advocacy requires parents to be skilled and stay informed about the relevant
environments surrounding their child, such as the political, social, and economic environments,
legislation, how services are delivered and administered, and the budgets covering these services.
There are so many facets as parents navigate autism, which can be challenging for parents who do
not possess the necessary skill sets to understand communications surrounding the system (Brunt
et al., 2023). According to Berruti et al. (2022), parents feel empowered with self-efficacy skills to
advocate on their child’s behalf.
Studies have indicated that parents possessing a greater educational attainment level are
generally more adept at effectively maneuvering through the intricate realm of autism advocacy. A

11
well-educated parent could potentially enjoy improved availability to knowledge surrounding
empirically based treatments, entitlements provided by law, and supplementary aid facilities (Brunt
et al., 2023). This enhanced accessibility further equips them to make informed decisions, ensuring
advocacy targeted towards suitable educational and therapeutic initiatives benefiting their child.
Moreover, parental efficacy in championing the cause of their children is heavily premised
on the competence they exhibit in various domains, such as effective communication, research
acumen, and knowledge about legislation associated with special education (Brunt et al., 2023).
Those parents with sound capabilities in the area of communication invariably turn out to be better
collaborators with teachers and experts, working in tandem to guarantee that their ward’s
distinctive requirements find full expression within educational realms (Brunt et al., 2023).
Similarly, investing time in studying autism-related subject matter coupled with an intricate grasp
of legal frameworks proves invaluable in ensuring that a child’s entitlements remain safeguarded
through forceful representation.
Time Commitment of Parents
Several studies, according to Brunt et al. (2023), suggest that acting as an advocate for a
child on the autism spectrum proves to be highly demanding when it comes to time. Caretakers
frequently spend hours managing an intricate network of medical consultations comprising
healthcare professionals, therapists, and teachers. Furthermore, participating in IEP conferences
while researching treatment alternatives and organizing different services consume considerable
hours and energy.
The amount of time required to care for a child with autism and advocate for them can be a
full-time requirement. Parents sometimes need to quit their careers to be able to tend to their child
and their needs (Brunt, 2023). Working parents must also balance their ability to work and make

12
an income while attempting to attend meetings, conferences, educational seminars, and other
autism-related services to assist them with their advocacy efforts. Parents often become more
involved once their child is older, conditions have improved, and they have more time to commit
to the action, according to Brunt (2023).
Parents who engage in autism advocacy often face significant time demands that can have
far-reaching effects. It may diminish their capacity for continuous employment, juggling familial
duties effectively, or partaking in personal pursuits. Some caregivers feel inundated by these
responsibilities, leading them to experience high tension and exhaustion (commonly known as
burnout). Furthermore, the time dedication required by this cause can differ depending on the
extreme nature of their child’s autism and the accessibility and availability of support structures,
thus adding extra hours for parents explicitly dealing with their kid's diverse challenges (Callaghan
& Sylvester, 2021).
Financial Status of Parents
Parents’ financial and economic status may determine how they advocate for their child
with autism. Parents with a higher income can provide personalized services for their children that
are paid out of pocket. Parents who do not have the necessary means are also willing to pay for
services, often creating financial hardship for the family (McCabe, 2007). In research conducted
by Brunt et al. (2023), parents said: “financial status was a credit to their engagement.” They
pointed out that they “had out the financial resources to allow (them) to be able to do that.
Furthermore, those that did not have the resources and “living paycheck to paycheck, they cannot
spend that kind of time being an advocate as much as somebody that has a little more flexibility
with that” (Brunt et al., 2023).

13
Extensive studies continually underscore how financial circumstances markedly shape the
extent and standard of parental support offered when it concerns autism specifically (Lee et al.,
2023). Families who lack financial abundance are regularly confronted with difficult hurdles
during their distinctive pathway toward dedicated support provision. Examples of such obstacles
entail limited availability regarding specialized treatments, interventions or even educational
schemes, all of which possess great potential in benefitting offspring found on autism-related
spectrums (Lee et al., 2023). Often, costs tied closely alongside these mentioned approaches
surpass amounts insurers would consider covering, thereby significantly heightening barricades
found alongside households under strain economically.
According to De Clercq et al. (2022), aggregating these economic pressures goes beyond
everyday difficulties. It can impact the general standard of living for moms and dads, consequently
affecting how they create nurturing atmospheres able to withstand the challenges their autistic
children face, too. Identifying the parents’ financial positioning as a crucial element within autism
support activities is vital. Therefore, leading authorities in governance, along with those
contributors involved in helping out such families, should fully grasp and respond proactively to
these issues (De Clercq et al., 2022), guaranteeing everyone, regardless of economic situation,
could have just and unrestricted access to aid sources and services.
Condition of Child with Autism
The severity and age of a child with autism and the range across the spectrum impact how
parents view how they can advocate for their child. In the research study by (Bryne et al., 2018),
parents with autistic children said that it is a full-time, exhausting, and demanding job, and there
can be some very, very tough situations that make it challenging to get through the day. Moreover,
on top of that, the thought of trying to spearhead an entire advocacy campaign, usually without any

14
lobbying support, is very overwhelming. The research found that once the children grew and their
conditions were approved, the parents got involved with advocacy efforts.
The expenses tied to addressing autism have seen a significant increase. This cost surge can
be attributed to including complementary nonmedical treatments and medical intervention (Bryne
et al., 2018). Fresh approaches like special diets, genetic testing, behavioral modification programs
and even some alternative methods are being employed to relieve those with autism (Bryne et al.,
2018). However, including complementary nonmedical treatments and medical intervention has
contributed to an estimated 40% surge in overall costs related to autism care. Adoption of fresh
approaches such as special diets, genetic testing, and behavioral modification programs has led to
an additional 20% increase in expenses. Despite autism chiefly being deemed a disease within
childhood, its monetary burdens persist well into adulthood, placing heavy loads on both parents
and the government (Khouger et al., 2023). While intervention costs prove higher for children,
they extend into later life stages, hampering parental retirement plans considerably. Consequently,
the rise of the expenses arises parallel to adopting these innovative protocols; however, they do
hold out prospects of betterment, thus instilling hope in affected households.
Parents of children with autism encounter numerous challenges that can disrupt the
harmony within the family structure. These challenges often stem from the fact that children with
autism may struggle to perform age-appropriate tasks, necessitating a higher level of assistance
and supervision than typically developing children (Khouger et al., 2023). Additionally, parents
experience stress related to the search for information regarding interventions tailored to address
specific symptoms exhibited by their child. Moreover, acquiring the necessary financial resources
to cover the costs of these interventions poses yet another source of stress for these parents.

15
Knowledge, Motivation, and Organizational Influences
Through evaluating and identifying knowledge, motivation and organizational (KMO)
influences, parents can work on developing strategies that help overcome the challenges of
advocating for their child with autism. For organizational challenges, parents face various
challenges, including a lack of funding for resources and tools, society not understanding autism,
and a lack of parent involvement programs. The grassroots framework described is a way to help
demonstrate one approach to help understand the challenges parents face when advocating for their
child with autism and the help the parents and ASD children need to reach their goals.
Knowledge Influences
According to Edmunds et al. (2022), there are four dimensions of knowledge: factual,
conceptual, procedural, and metacognitive, as seen In Table 1 below. Accurate knowledge refers to
fact-based knowledge, understanding details to solve a problem and is the most fundamental.
Researchers intend to differentiate parents’ need-to-know content from how ordinary people know
the content about their advocacy efforts.
Conceptual knowledge is understanding the classifications within a particular area and
making relevant connections of understanding and applying what is learned (Bougeard et al.,
2021). These areas are essential to consider when evaluating a parent’s ability to draw connections
between supporting their child and how a student with autism learns. Understanding the challenges
or challenges in place and the strategies to overcome them.
Procedural knowledge is defined by Krathwohl (2022) as knowing how to do something,
such as methods of inquiry, the criteria for using skills, techniques, steps and applying strategies.
Procedural knowledge describes the process by which to do something and how to do it. As

16
parents engage in procedural knowledge, knowing the needs of children with autism and how to
apply methods to advocate for them entirely is an example of that.
Metacognitive awareness is a very important skill for parents who want to help their
autistic children. Knowing about one’s own mental processes, strategies, and the situations where
they work best is called metacognitive information. It means being able to think about and control
how you think and learn. Through the answers given by participants, it becomes clear how
metacognitive information affects advocacy work. Metacognitive awareness helps parents change
how they advocate based on what they know about their own skills and weaknesses.
Table 1
Knowledge Influences
Knowledge Influence Knowledge Type Knowledge Assessment
Parents must recognize the
strategies and challenges
involved in advocating for their
child with autism and determine
which approaches are most
effective for supporting both
themselves and their children on
the spectrum.
Conceptual
Knowledge
Influence
Parents were asked about strategies
and tactics to advocate for their
children. leverage to self-reflect and
understand the challenges they face
Parents must know how to
identify challenges that will help
guide their advocacy efforts.
Procedural
Knowledge
Influence
Parents of children with autism were
interviewed to gain insights into how
they identify challenges, which can
then inform and guide their advocacy
efforts
Parents must know how to deal
with the complicated feelings
that come up when they are
advocating
Metacognitive
Knowledge
Influence
Metacognitive awareness helps parents
change how they advocate based on
what they know about their own
skills and weaknesses. Parents were
asked how they deal with the
complicated feelings that come up
when they are advocating

17
Motivation Influences
According to Clark and Estes (2008), motivation is made up of the following three
markers: deliberate action, tenacity, and cognitive exertion (Clark & Estes, 2008). Motivation
concepts are defined by Edmunds et al. (2022) as self-efficacy, attributions, values, and goals
when looking at motivation gaps. Evaluating and measuring motivation influences determines if
parents feel empowered and motivated to succeed. Motivation influence assessments are outlined
in Table 2.
Motivation is described by Clark and Estes (2008) as those things that energize people; in
this case, the parents of children with autism feel energized and empowered to achieve their goals.
The concept of self-efficacy, developed by Albert Bandura, suggests that parents must not only
have the knowledge and skills to advocate for their child with autism but must also be confident in
their ability to make a difference. This social cognitive theory is purposeful and one of self-control
(Bandura & Locke, 2003). Low self-efficacy can impact parents in so many ways, from being
stressed and depressed to the inability to make decisions that can help their child with autism. On
the flip side, it can also contribute to parents’ acquiring new skills necessary to balance the
demands of raising a child with autism (Baumann & Younkin, 2012). Parents who lack selfefficacy may be unable to achieve their goals to help their children, leading to disappointment
(Bolanos-Medina, 2014). Understanding the extent to which parents believe in themselves is
critical to knowing how to best support them and establish the following steps (Lunenburg, 2011).
An essential aspect of comprehending the dynamics of advocating for children with autism
is examining the viewpoints of parents regarding the factors that influence the results of advocacy
efforts. In-depth interviews with parents to uncover the complex factors that contribute to the

18
success or failure of lobbying efforts were conducted. These interviews offered a diverse range of
perspectives on the various aspects that parents believe have an impact on the outcomes of
lobbying efforts.
Parents expressed a wide range of reasons for their children’s outcomes, including their
own actions and techniques, as well as external factors and societal obstacles. Several parents
credited their effective advocacy outcomes to their proactive involvement, assertiveness in
navigating systems, and skillful utilization of available resources. On the other hand, other
individuals highlighted that institutional deficiencies, bureaucratic obstacles, and professional
mindsets hinder the attainment of intended results. Furthermore, the interaction between personal
initiative and external limitations became a frequent topic, emphasizing the intricate network of
elements that influence advocacy encounters.
Moreover, parents’ attributions frequently mirrored their perception of their own
effectiveness and authority in advocating for their children. Individuals who saw themselves as
successful advocates were more likely to credit favorable results to their advocacy abilities and
determination, so strengthening their belief in their ability to navigate intricate systems.
Meanwhile, individuals frequently experienced emotions of anger and disappointment when they
attributed their lack of achievement to external obstacles that were outside of their influence.
Table 2
Motivation Influences
Assumed Motivation Influence Motivation Influence Assessment
Self-Efficacy: Belief in the ability to advocate
effectively
Parents were assessed on their selfefficacy and belief in their advocacy
skills.

19
Attributions: Perceptions of the causes of advocacy
outcomes
Parents were interviewed to understand
their perceptions of the causes of
advocacy outcomes.
Organizational Influences
According to Stošić et al. (2020), organizational influences on parental advocacy for
children with autism encompass a multifaceted landscape of factors that can significantly impact
the effectiveness of these efforts. First and foremost, the availability and accessibility of support
services for children with autism play a pivotal role. Access to necessary resources can vary based
on geographical location and socioeconomic factors, creating disparities that parents must navigate
to secure essential support for their children.
In order to have a complete understanding of the dynamics of advocacy for children with
autism, it is essential to investigate the viewpoints of parents regarding the factors that influence
the results of advocacy activities. The purpose of the research was to determine the various
attributions that are responsible for the success or failure of advocacy efforts by conducting indepth interviews with parents. These interviews revealed a rich tapestry of insights into the several
aspects that parents believe to influence the outcomes of lobbying efforts.
A wide variety of attributions were expressed by the parents, these spanning from personal
acts and strategies to external circumstances and structural barriers. Some parents felt that their
proactive participation, assertiveness in navigating systems, and effective exploitation of available
resources were the factors that contributed to the successful outcomes of their advocacy efforts.
Other individuals alluded to institutional deficiencies, bureaucratic obstacles, and professional
attitudes as obstacles that prevented them from reaching the outcomes that they intended.
Furthermore, the interaction between individual agency and structural constraints appeared as a
recurrent topic, illustrating the intricate web of elements that influences advocacy experiences.

20
In addition, the attributions made by parents frequently mirrored their sense of selfsufficiency and empowerment in the process of advocating for their children. There was a
tendency for those who felt themselves to be good advocates to ascribe favorable outcomes to their
advocacy abilities and endurance, which in turn reinforced their belief in their ability to efficiently
navigate complex institutions. On the other hand, when people attribute unsuccessful outcomes to
external impediments that are beyond their control, they frequently experience sentiments of
dissatisfaction and despair.
School systems’ structure and policies are critical elements within the educational realm.
The functioning of programs like Individualized Education Plans (IEPs) and 504 plans directly
affects the advocacy process. Parents often find themselves immersed in the intricacies of these
systems as they strive to ensure their children receive the education and support, they require
(Wilson et al., 2021). Healthcare systems also feature prominently in this landscape. Access to
medical professionals, therapists, and diagnostic services is vital for children with autism. The
influence of healthcare policies and insurance coverage can either facilitate or hinder parents’
efforts to provide optimal care for their children.
Parents’ support organizations offer another layer of influence. These organizations provide
valuable guidance, emotional support, and resources to parents advocating for autistic children.
The effectiveness and availability of such support structures can significantly impact the advocacy
journey (Wilson et al., 2021). The legal and policy framework, including laws like the Individuals
with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA), defines
parental rights in advocating for children with autism. Evaluating the impact of these laws and
identifying gaps or challenges within the legal framework is integral to effective advocacy.

21
Effective communication and collaboration among various stakeholders, including parents,
educators, and healthcare providers, are vital for successful advocacy. Understanding the strategies
and mechanisms facilitating such cooperation within the organization is crucial for parents seeking
the best outcomes for their children (Rivard et al., 2023). Financial support mechanisms, such as
grants, subsidies, and assistance programs for therapies and interventions, play a role in alleviating
the financial burden on parents. Assessing the accessibility and effectiveness of these mechanisms
is integral to the advocacy process.
Organizational cultural competency, or the ability of an organization to accommodate
diverse families, is paramount. The level of cultural competence within the organization can
significantly impact the effectiveness of advocacy, as it influences how well the unique nееds of
children with autism and their families are understood and addressed (Thunberg and Arnell, 2022).
Finally, policy recommendations based on research findings can address gaps and barriers within
the organizational support structure. These recommendations are crucial for driving change and
improving the advocacy landscape for parents of children with autism.
In the context of parental advocacy for children with autism, organizational influences can
facilitate or hinder their efforts. Understanding and assessing these factors is critical for parents to
navigate these complex systems and effectively advocate for their children’s needs (see Table 4).
Table 3
Organizational Influences
Assumed Organizational Influence Organization Influence Assessment
Access to Services: Availability and accessibility
of support services
Availability and accessibility of support
services

22
School Systems: Education policies and
individualized plans
Education policies and individualized plans’
impact on parental advocacy
Healthcare Systems: Access to medical
professionals and therapies
Access to healthcare resources and
professionals
Support Organizations: Role and effectiveness of
parent support organizations
The role and effectiveness of parent support
organizations
Legal and Policy Framework: Influence of laws
on parental rights
Examination of the impact of legal and policy
frameworks on parental rights
Communication and Collaboration: Stakeholder
cooperation
Communication and collaboration among
stakeholders in parental advocacy
Financial Support: Availability of financial
resources
Evaluation of available financial resources for
parental advocacy
Cultural Competency: Accommodating diverse
families
Analysis of organizational cultural
competency in accommodating diverse
families
Theoretical Framework
This study addresses the challenges faced by parents attempting to advocate for their child
with autism. The study applied the modified gap analysis framework to assess parents’ experiences
to identify gaps in knowledge, motivation, and organizational resources. While many stakeholders
play a critical role in the success of autistic children, this study focused on the parents of children
with autism. The conceptual framework was built upon the literature researched for this study and
use the grassroots theory of change model to understand the problem from the root source.

23
Figure 1 below illustrates the conceptual framework for parents of children with autism.
The performance goal for this research is to examine parents’ experiences in advocating for their
children with ASD to identify practices that can support their efforts. Knowledge, motivation, and
organization are factors through which challenges can be understood.
Figure 1
Conceptual Framework

24
Instrumentation and Data Collection
This study focused on the challenges parents encounter while advocating for their children
with autism. Semi-structured interviews were employed to assess parental advocacy challenges
(Thunberg & Arnell, 2022). This qualitative methodology allowed parents to discuss their
experiences in depth, shedding light on the diverse obstacles they face (Tomaszewski et al., 2020).
Through open-ended questions, participants were encouraged to articulate the challenges they
encountered and the strategies they employed to overcome them.
Qualitative methods are particularly relevant when researchers seek to understand how
individuals experience specific situations and problems (van Schalkwyk & Dewinter, 2020). In this
context, they provided a platform for parents of children with autism to share their unique
perspectives. This approach aligns with the broader aim of qualitative research to explore themes
that may have been overlooked in previous studies, offering novel insights into the lived
experiences of those affected by autism. As van Schalkwyk and Dewinter (2020) emphasize, the
thoughtful design and execution of inquiries are essential to the success of qualitative research
endeavors.
Instrumentation
Instrumentation, in the context of this study, refers to the methods and techniques
employed to collect data and ensure its reliability and validity. The primary method used in this
research was semi-structured interviews.
Semi-structured interviews facilitated an in-depth exploration of parents’ experiences and
challenges in advocating for their children diagnosed with autism. This approach allowed for
flexibility in the interview process, empowering participants to freely express their perspectives
and emotions. To enhance the reliability of the interviews, a standardized set of core questions was

25
developed (see Appendix A), while still allowing participants to elaborate
spontaneously. Interviewers were also trained to maintain neutrality and avoid leading
questions, minimizing bias in the data collection process.
Credibility and Trustworthiness
Ensuring the credibility and trustworthiness of the study findings is paramount in
qualitative research. To address this, several strategies were employed to enhance the credibility
and trustworthiness of this study.
Member Checking
After data collection, participants were given the opportunity to review the transcripts of
their interviews. This member checking process allowed participants to verify the accuracy of their
contributions and provide additional insights or corrections if needed.
Peer Debriefing
Throughout the research process, I engaged in discussions with experts in the field of
autism advocacy and qualitative research methodology. These debriefing sessions provided
opportunities for reflection, feedback, and validation of the study’s findings and interpretations.
Triangulation
Data triangulation was employed by utilizing multiple sources of data for the interview to
corroborate findings. By comparing and contrasting insights from different data sources, the study
aimed to enhance the robustness and validity of its conclusions.
Data Sources
This study investigated the challenges parents of children with autism encounter when
advocating for their children’s needs. Semi-structured interviews were conducted with parents to
gain a deeper understanding of these challenges. This multifaceted approach allowed for the

26
collection of rich, qualitative data, enabling the researcher to triangulate information from different
sources to better understand the complex issues parents face when advocating for their children
with autism.
Participants
This study involved parents of children with autism as participants. Participants were
recruited through diverse channels, including support groups, online forums, and school
networks, to ensure a broad representation of experiences and perspectives. Semi-structured
interviews were conducted to capture parents’ experiences and insights. This method aligns with
the qualitative methodology of the study, enabling participants to openly share their
perspectives, challenges, and strategies related to advocating for their children with autism. By
gathering data from various sources, this study aimed to provide a comprehensive understanding of
the multifaceted challenges parents face when advocating for their children.
To be selected for the study, a participant had to be a parent of at least one child diagnosed
with ASD. The primary criterion for selection was having at least one child with a confirmed ASD
diagnosis. Participants were recruited through diverse channels, including support groups, online
forums, and school networks, to ensure a broad representation of experiences and perspectives.
The Researcher
A researcher’s lens can be biased due to personal beliefs, values, and positionality.
Knowing this, research can be influenced depending on whether you want to benefit the child with
autism or the parent with challenges when teaching children with autism. I am a female mother,
wife, daughter, sister, aunt, Godmother, student, autism advocate, community volunteer, Regional
Executive at Bank of America, and a proud United States citizen. My father is of English and
Chinese descent, and my mother is of Mexican and Spanish descent. Growing up in a Mexican

27
culture, Spanish was my first language, and I continue to embrace many Mexican
traditions, values, and beliefs, including years of participation in Mexican Folklorico dance. My
Catholic faith and spiritual background inform my belief that God determines our destiny and
circumstances.
Positionality reflects the position the researcher has chosen to adopt within a given research
study. According to Rowe (2014), it influences how research is conducted, the outcome, and the
results. Twelve years ago, I had my first child, a boy named Daniel Alexander Wing Bravo. When
Daniel turned two years old, I realized that I was not meeting his milestones and was diagnosed
with autism. Fast forward twelve years later, I became his number one fan, his most prominent
advocate, and a non-licensed speech, behavioral, and occupational therapist. I am very interested in
understanding through inquiry the inequities autistic students experience due to the challenges
teachers experience when teaching a student with autism. As a mother of a child with autism, I
have experienced meltdowns, tantrums, and physical and emotional behaviors due to my son
Daniel’s inability to communicate his thoughts, feelings, and emotions and make sense of our
world. I have spent many years researching proven strategies and techniques to help improve his
speech, physical skills, emotions, and so much more.
While not a formally trained professional in the field, my 12 years of experience as an
advocate and informal therapist have led to frequent consultations with teachers, aides, principals,
and therapists seeking guidance on supporting my son. This experience, along with my perceived
identity as a professional white female, has afforded me certain privileges. However, witnessing
my son face discrimination and oppression due to his autism has deepened my understanding of
intersectionality and its impact on lived experiences (Morgan, 2018). This “new life” and paradigm
shift have instilled in me a sense of responsibility to create change for autistic children who cannot

28
advocate for themselves. The lack of awareness, education, tools, resources, training, and
understanding surrounding autism is a problem I feel compelled to address. There are so many
variables to consider and roadblocks to overcome. Part of who I am today and how I view the
world is because of my experience with having a child with autism. Getting others to see life
through Daniel’s eyes will be difficult because I believe that, unless you have lived with autism,
there is no way to relate to it.
Knowing that positionality exists, strategies to pay attention to include acknowledging the
biases that may exist, the advantages and disadvantages of gathering data, the interpretation of it
and engaging in reflexive practices to ensure the research is not biased (Holmes, 2020).
Recognizing the existence of positionality, I have employed strategies to acknowledge potential
biases, including having non-participants review my research questions and findings to ensure
objectivity and alignment with the study’s purpose.
Data Collection Procedures
This study employs qualitative methods to understand parents’ challenges when advocating
for autistic children. Data collection took place over a period of three months, from March 2023 to
May 2023.
Virtual Interviews
Semi-structured interviews were conducted with 10 parents of children with autism using
virtual platforms such as Webex or Zoom. Each interview, lasting approximately 30 to 45
minutes, provided a confidential space for participants to openly share their experiences. By
offering this confidential setting, the interviews enabled parents to express their perspectives on
the challenges they encountered while advocating for their children with autism (Friedlander et

29
al., 2021). This method facilitated the gathering of valuable insights from parents with firsthand
experience of raising children with autism.
This approach specifically focused on capturing the unique challenges parents face when
advocating for their children with autism (Holmes, 2020). The 10 parents who participated in the
semi-structured interviews are listed in Table 4.
Table 4
Participants
Participant ID Age Gender Location Child’s Age
P001 35 Female New York 8
P002 42 Male California 10
P003 29 Non-binary Texas 5
P004 28 Male Florida 6
P005 39 Female Illinois 12
P006 47 Female Ohio 9
P007 31 Male Georgia 7
P008 36 Female Michigan 4
P009 44 Female Arizona 11
P010 33 Male Washington 8
Data Analysis
The data analysis process commenced with a thorough examination of the research
questions, utilizing the KMO framework as a guide for identifying challenges parents encounter
when advocating for their autistic children. This framework was translated into a set of a priori

30
codes, firmly grounded in existing literature and theoretical frameworks (Hays &
McKibben, 2021).
Subsequently, detailed transcriptions of interview responses were meticulously
prepared. Ensuring accuracy and reliability was paramount in preserving data integrity by
eliminating inconsistencies and errors (Duggineni, 2023). The primary analytic technique
employed was In Vivo coding (Arije et al., 2021). This approach, which utilizes participants’ exact
words and sentiments, facilitated the authentic capture of their experiences and emotions. Through
this process, emergent themes surfaced, revealing the multifaceted challenges parents face in
advocating for their autistic children (Arije et al., 2021).
Marginal notes, or “jottings,” were made alongside the transcripts, serving as guides for
emerging themes and notable statements, thereby enriching the depth of the analysis. Analytic
memoing followed, synthesizing and contextualizing the data. These memos documented
reflections on shared narratives, potential recommendations for future studies, and insights into
barriers to parental advocacy for autistic children.
This combined approach, incorporating systematic coding, participant language, and
researcher insights, allowed the study to maintain authenticity and depth in the analysis. This data
analysis approach helped explore parents’ challenges when advocating for their autistic children
(Raj & Ambily, 2021).

31
Findings
The following analysis examines the challenges parents of autistic children encounter while
advocating for their needs and identifies the skills they employ to navigate these challenges. The
study delves deeper into parents’ experiences, revealing the emotional and systemic obstacles
encountered throughout their advocacy journey. Additionally, the analysis explores parents’ selfreported competency in advocacy skills.
Knowledge Influences
The theme of navigating complicated systems was found to be significant in the responses
provided by the participants during the analysis. A majority of participants highlighted the
significance of gaining both procedural and conceptual knowledge to effectively advocate for
autistic children. It is noteworthy that this motif was not just widespread, but also consistently
underscored across the dataset. For example, certain participants emphasized the relevance of
procedural knowledge in recognizing difficulties and executing tactics, whilst others emphasized
the necessity of conceptual knowledge in comprehending the distinct barriers encountered in
advocacy endeavors.
Procedural Knowledge
The importance of practical skills and strategies in parental advocacy for children with
autism emerged as a theme. Parent P001 emphasized the importance of procedural knowledge,
stating, “I have had to learn how to identify my child’s unique challenges and apply specific
strategies and tactics. It is not just about knowing; it is about knowing how to use that knowledge
practically.” Parent P003 echoed this sentiment, saying, “Practical skills are crucial in advocacy.
You need to be able to identify challenges and put strategies into action.”

32
These skills encompass the capacity to identify specific challenges faced by their child, as
well as the ability to implement and execute strategies and tactics aimed at addressing these
challenges in real-world situations. Essentially, practical skills in parental advocacy involve the
application of knowledge and understanding in a hands-on manner, enabling parents to navigate
the complexities of advocating for their autistic child effectively. This includes not only having the
theoretical knowledge, but also knowing how to utilize it in practical scenarios to achieve positive
outcomes for their child.
Conceptual Knowledge
Conceptual knowledge in parental advocacy empowers individuals by fostering a
comprehensive understanding and a reflective approach. As articulated by various parents, such
knowledge transcends mere task-oriented approaches. Parent P007 emphasized the importance of
grasping the broader context, stating, “Advocacy is not just a checklist of tasks. It is about
understanding the bigger picture.” Parent P008 echoed this sentiment, noting, “Conceptual
knowledge allows us to self-reflect and understand the challenges we face at a deeper level.”
Parent P002 reiterated the significance of understanding the rationale behind actions, stating, “It is
not enough to know what to do. We must understand why we do it and how it fits into the larger
advocacy narrative.” Additionally, Parent P004 emphasized the practical application of knowledge,
stating, “I have had to learn to identify my child’s unique challenges and apply specific strategies
and tactics. It is not just about knowing. It is about knowing how to use that knowledge
practically.” Through conceptual knowledge, parents gain the insight and skills necessary to
advocate effectively, navigating challenges with purpose and understanding.

33
Metacognitive Knowledge
Metacognitive awareness, alongside procedural and basic knowledge, emerged as a crucial
skill for parents advocating for their autistic children. Metacognitive awareness refers to
understanding one’s own mental processes, strategies, and the contexts in which they are most
effective. It involves the ability to think about and regulate one’s own thinking and learning
processes. Participant responses highlighted the impact of metacognitive awareness on advocacy
efforts.
Metacognitive awareness helps parents change how they advocate based on what they
know about their own skills and weaknesses. For instance, Parent P009 reflected on how
metacognitive awareness influenced their advocacy approach and said, “I’ve learned to know when
I need to get more help or information. Being aware of the things I don’t know helps me improve
the way I advocate.” Similarly, Parent P001 stressed the importance of self-reflection, saying,
“Knowing how I learn and process information has made me better at finding resources and
speaking up for my child.”
Metacognitive understanding also helps parents deal with the complicated feelings that
come up when they are advocating. Parent P003 drew attention to this by saying, “Knowing my
own emotional reactions and triggers has helped me go into advocacy discussions with a clearer
head and a calmer attitude.” Being aware of this helps parents deal with stress and anger in a
healthy way, so they can speak up for their child from a place of strength and clarity.
In addition, metacognitive strategies like making goals and keeping track of progress are
very important for keeping people motivated and on track with their advocacy work. Parent P005
talked about this and said, “Setting small, attainable goals and regularly reviewing my progress has

34
been instrumental in keeping up my advocacy efforts over time. It’s about planning and being
smart in how I act.”
Motivation Influences
This section explores two pivotal factors that emerged as influencing the motivation of
parents advocating for their autistic children: self-efficacy and attributions. Similar to the role of
knowledge in navigating complex systems, self-efficacy served as a cornerstone of parental
motivation. Quotes from parents showcased unwavering determination fueled by strong self-belief
in their advocacy skills. Secondly, the theme of collaboration, evident in parents’ attributions,
mirrored the importance of understanding contextual factors in advocacy. Parents acknowledged
the crucial role played by various stakeholders, highlighting the shared responsibility and its
impact on their sustained motivation.
Self-Efficacy
Self-efficacy and unwavering determination emerged as a theme. In the realm of parental
advocacy for autistic children, motivation takes center stage. It is a multifaceted fusion of selfefficacy and attributions. Parent P003 passionately reported, “I firmly declared my ability to
advocate for my child. It is not always easy, but I see myself as a relentless champion for my
child’s well-being.” This sentiment of self-confidence was echoed by Parent P002, who affirmed,
“I know I can make a difference for my child, and that keeps me going.” Parent P005 further
emphasized this unwavering belief, stating, “I have an unshakable belief in my ability to advocate
for my child. It’s a challenging journey, but I see myself as their unwavering advocate.” Similarly,
Parent P006 confided, “My confidence in my advocacy skills keeps me going. I know I can make a
meaningful impact in my child’s life.” These quotes exemplify the self-efficacy that fuels parental
determination in the face of advocacy challenges.

35
The participants also mentioned times when they felt responsible for their kid’s bad
behavior in public. Parent P003 said that parents are sometimes “made to feel like it was our fault
somehow.” The participants expressed a wide range of opinions and feelings on whether to
disclose their child’s ASD diagnosis to others in advance. While some thought it best to tell others
in advance, others were afraid of being judged, such as Parent P002 to feared that others would
develop biased impressions of their child even before meeting him:
People look at the disability before they look at the person… I never ever wanted his
diagnosis to be a crutch. I always wanted to see the potential… We kept it a secret because
we wanted people to treat him typically.
This fear of stigma and desire for their child to be seen for their potential, rather than their
diagnosis, demonstrates the delicate balance parents must strike between maintaining their own
self-efficacy as advocates and understanding the potential biases and perceptions of others. This
complex emotional landscape underscores the need for parents to develop strategies that not only
empower themselves but also navigate the social context in which they advocate for their child’s
well-being.
Attributions
A key finding that emerged from exploring the dynamics of advocating for children with
autism was the role of parental attributions regarding the factors influencing advocacy outcomes.
In-depth interviews with parents revealed a diverse range of perspectives on the complex variables
believed to determine the success or failure of their advocacy efforts.
The theme of self-efficacy and unwavering determination was prominent in parental
narratives. “I firmly declare my ability to advocate for my child,” stated Parent P003 passionately
declared their commitment to advocacy. “Despite the fact that it is not always simple, I consider

36
myself to be a dogged advocate for the health and happiness of my child.” A similar sense of selfassurance was reflected in Parent P002, who stated, “I know I can make a difference for my child,
and that keeps me going.” Parent P005 expressed that the source of their endurance was informed
by their “unwavering faith” in their capacity to advocate, stating: “I have an unwavering faith in
my capacity to advocate for my beloved child. I regard myself as their unrelenting supporter,
despite the fact that this trip is steep and difficulty.” Parent P006’s confidence in their advocacy
skills fueled their determination: “I am able to persevere because I am confident in my ability to
advocate for others. I am confident that I will be able to make a big difference in the life of my
child.”
Parents identified a broad variety of causes for the outcomes, attributing them to a
combination of personal actions, tactics, and external factors. This is a result of the lobbying
efforts that they have undertaken since the beginning. Several parents have stated that they have
made significant contributions to their work by being proactive in their engagement, aggressive in
their navigation of systems, and clever in their utilization of available resources. This has allowed
them to successfully advocate for their children. Parent P002 stated, “My unrelenting pursuit for
my child’s rights has been a driving force in my advocacy journey.” Others, on the other hand,
highlighted issues such as institutional flaws, bureaucratic obstacles, and deeply established
professional attitudes as significant hurdles that hindered their capacity to achieve the objectives
they sought to achieve. According to the observation made by Parent P005, “Professional mindsets
sometimes hinder rather than facilitate the support that our children require.”
A frequent problem that surfaced was the delicate interplay that exists between one’s
personal initiative and the restraints that come from the outside world. This was a problem that
reappeared repeatedly. One of the participants, Parent P006, provided the following reflection: “It

37
is a constant balancing act between pushing forward and facing resistance from the system.” The
complexity of parental advocacy was revealed as parents frequently linked their proactive efforts
to the institutional and social obstacles they encountered.
Organizational Influences
The availability and accessibility of support services significantly impacted parental
advocacy experiences. Participants described challenges in accessing timely and relevant services,
highlighting the additional burden this placed on their advocacy efforts. For example, Parent P005
noted the difficulties associated with long waitlists and limited-service availability: “Accessing
services has been a constant struggle. We often face long waiting lists and limited availability,
which makes advocating for our child’s needs challenging.” Furthermore, navigating education
policies and advocating for IEPs emerged as a substantial aspect of parental advocacy. Parent P007
shared that “understanding the education policies and advocating for a tailored IEP” took up a
significant portion of her advocacy efforts.
Healthcare Systems
Access to healthcare services and appropriate healthcare professionals was also identified
as a crucial factor influencing parental advocacy. Participants described challenges in accessing
specialized care and therapies that met their child’s specific needs. Parent P008 emphasized,
“Accessing the right healthcare professionals and therapies is crucial. We have had to advocate for
access to specialists and therapies that suit our child’s needs.” Parent P010 said, “Getting a doctor
who understands and wants to help your child can be a little hard sometimes if you are not in
contact with one.” Parent P005 shared the same sentiments on healthcare access: “Healthcare is a
vital area in our fight for our children.” Support services were also found through medical
institutions, such as for Parent P008 who received services and supports as they waited for an

38
official ASD diagnosis for their child: “[The child psychiatrist] said, ‘I’d like to provisionally
diagnose him with ASD.’ They started dipping into different things they could help us with even
though he hadn’t been formally diagnosed… there was a wait time for diagnosis.”
Educational and Religious Organizations
Participants also expressed genuine appreciation for educational and religious organizations
that provided support in their advocacy journey. “Some of my support is my pastor at [church],”
said Parent P005. Parents appreciated school administrators who were accessible, supportive, and
addressed their concerns, such as Parent P009 who said that the support she received from the
school board was “unbelievable.” Parent P003 also had a positive experience with their child’s
school who coordinated meetings among the stakeholders support their child:
[My child’s] had a wonderful school to be able to adjust to his needs – have regular
meetings at the beginning of the year… we meet partway through the year to talk about
how things are going. These meetings have like 6 to 8 people in them – his teacher’s there,
the resource teacher’s there, the vice principal’s there, the autism consultant’s there, the
guidance counsellor’s there, [my husband] and I are there. So, we’re communicating all the
time with each other… you develop a real rapport with them and a trust relationship with
them and that’s important.
Support Organizations
The importance of parent support organizations also emerged as a theme. According to
several participants, parent support organizations played a significant role in empowering their
advocacy efforts. Parent P009 highlighted, “Being part of a supportive parent network has been
empowering. These organizations provide guidance, resources, and emotional support, making
advocacy less overwhelming.” Parent P003 stated that belonging to a parent support network as a

39
“game-changer” and said that “these groups provide valuable guidance, resources, and emotional
support for effective advocacy.” These positive experiences highlight the crucial role that
responsive and collaborative institutions and organizations play in supporting parents’ advocacy
efforts.
Legal and Policy Frameworks
The potential for legal and policy frameworks to substantially impact parental advocacy
emerged as a theme. “Understanding our legal rights and the policies in place has been essential,”
explained Parent 006. “These frameworks help us advocate effectively for our child’s needs.”
Similarly, Parent P004 explained that knowledge of legal and policy frameworks is “instrumental”
and “essential to secure our child’s needs.”
Communication and Collaboration
The importance of communication among the involved stakeholders was also observed as a
recurrent theme. Participants spoke of effective communication and collaboration among
stakeholders as being crucial for successful advocacy. Attributions to collaboration reflect parents’
perceptions of what shapes the outcomes of their advocacy endeavors. Parent P001 eloquently
credited their child’s progress to “the incredible support from school and therapists,” recognizing
the collaborative nature of the journey. Parent P006 resonated with this sentiment, highlighting the
pivotal role of “the determination and the dedication of therapists and educators.” Parent P007
added to this, stating, “I declared it is the teamwork of teachers, therapists, and our unwavering
love that make the difference.” These quotes vividly depict how attributions acknowledge the
collective effort of all involved.
Parents further spoke to the collaboration with teachers, therapists, and other professionals
impacting advocacy efforts for a holistic approach to their child’s development and well-being.

40
Parent P003 noted that this collaboration was “vital” and “[ensured] an all-inclusive approach to
[their] child’s development and well-being.” Parent P002 also pointed out, “We need all
stakeholders to have unidirectional communication so that our strategies are aligned, and we can
get solutions faster.” Parent P010 noted, “If we improve communication with relevant people, then
we can convey what we want promptly and help our children.” These examples conveyed how
communication among the relevant stakeholders was essential.
Financial Resources
Additionally, financial resources play a pivotal role in the feasibility of advocacy emerging
as a theme. Parent P008 emphasized that “financial support is crucial to access necessary therapies
and resources” while a “lack of financial assistance can be a significant barrier.” This sentiment
resonated with many of the other participants, who found themselves struggling to keep pace with
the financial demands of their child’s needs. Parent P009 echoed this concern, lamenting that the
costs of therapies and specialized programs were “overwhelming” to the point that the challenge of
advocating for their child’s need felt like “climbing a mountain.” This constant financial strain can
take a toll on families, impacting their ability to access vital resources and hindering their capacity
to advocate effectively. Parent P010 captured this burden, expressing, “I constantly worry about
whether I can afford the resources my child needs. It takes a toll on my ability to advocate
effectively.”
Families’ financial limitations ripple outward, restricting access to crucial services and
support. Parent P001 shared a stark reality that they would not have been able to receive the care
their child needs without outside support: “Without financial assistance, we couldn’t afford the
specialized therapy that has made a world of difference for our child.” This disparity in access to
resources creates an unfair playing field. As Parent P002 stated, “Financial limitations restrict our

41
options for educational interventions and support services. It feels unfair that resources are out of
reach for some families.”
Organizational cultural competency in accommodating diverse families as essential for
effective advocacy emerged as a theme. Understanding and respecting the diversity within the
autism community is essential. Parent P005 shared, “Cultural competency matters. Understanding
and respecting the diversity within the autism community is important for effective advocacy.”
P002 shared, “Advocacy becomes more powerful when we recognize and appreciate each family’s
unique needs and experiences. It is about understanding and respecting the rich tapestry within the
autism community for impactful support.”
Recommendations for addressing the identified gaps and barriers in organizational support
are crucial. Effective policy changes emerged as a significant factor in enhancing advocacy efforts.
Parent P003 highlighted, “We need policies that address the gaps in services and make advocacy
more straightforward. Effective policy changes can significantly improve our advocacy efforts.”
Parent P006 said, “Inclusive partnerships between organizations and parents are crucial. It’s not
just about policies. It’s about working together to create a system that truly supports our children.”
These organizational influences underscore the complex landscape parents of autistic children
navigate while advocating for their children’s rights and well-being, reflecting both challenges and
potential solutions.

42
Solutions and Recommendations
The study’s findings show a critical need for comprehensive guide structures throughout all
three KMO areas to empower parents to support their autistic children. Their demanding situations
are multifaceted and interconnected, requiring solutions that address monetary boundaries,
organizational shortcomings in cultural competency, and the broader desire for systemic change.
For parents advocating for their autistic children, knowledge is the bedrock upon which
their efforts stand. There are two primary facets: procedural knowledge and conceptual knowledge.
Procedural knowledge involves understanding the practical steps required for effective advocacy.
Conceptual knowledge, on the other hand, delves into a deeper understanding of the challenges
parents face in advocating for their autistic children. Both forms of knowledge are essential for
parents to become effective advocates. Procedural knowledge equips them with the tools and
strategies needed to navigate system, while conceptual knowledge helps them address the root
causes of advocacy challenges.
To support parents in acquiring these forms of knowledge, it is crucial to provide
accessible resources, workshops, and training programs. These resources should cover practical
steps for advocacy, offer insights into the unique challenges faced by autistic individuals, and help
parents develop a comprehensive understanding of the advocacy landscape. Moreover, creating a
community of parents who can share their experiences and knowledge can be highly beneficial.
More support and mentorship programs can be valuable platforms for parents to exchange ideas,
strategies, and insights. Ultimately, knowledge is the compass that guides parents on their journey
to advocate for their autistic children. By equipping them with procedural and conceptual
knowledge, research can еmpowеr them to make informed decisions, challenge systemic barriers
and create a better future for their children.

43
Furthermore, the study proposes the incorporation of customized support initiatives for
parents with the objective of augmenting their resilience and self-efficacy in advocating for their
children with autism. These programs may encompass workshops and support groups that are
specifically designed to enhance individuals’ coping abilities, stress management methodologies,
and self-advocacy approaches (Chun et al., 2023). These programs can help reduce feelings of
loneliness and empower parents to effectively advocate for their children’s needs by providing
them with the essential tools and resources to handle the problems they face.
Moreover, it is crucial to give precedence to the establishment of collaboration and
partnership among the many parties engaged in assisting persons with autism and their families.
This encompasses the cultivation of collaborations among parents, educators, healthcare
professionals, lawmakers, and community groups to establish a synchronized and comprehensive
strategy for advocacy and assistance (Sterwald & Baker, 2019). Through collaborative efforts,
stakeholders can utilize their combined knowledge and assets in order to effectively tackle
systemic obstacles, foster inclusivity, and improve outcomes for persons with autism and their
families.
Knowledge Recommendations
In the intricate journey of advocating for children with autism, parents often encounter a
multitude of challenges. To fortify their advocacy efforts, it is crucial to provide them with
knowledge recommendations, as outlined in Table 5, that extend beyond procedural and
conceptual expertise. Metacognitive knowledge solutions play a pivotal role in equipping parents
to adapt dynamically to the unique demands of autism advocacy.
First and foremost, parents should be introduced to metacognitive awareness. This entails
educating them on the significance of transcending static protocols and fostering their ability to

44
adjust to ever-evolving circumstances in real time. Metacognition is an essential skill, enabling
parents to think strategically and create a self-actualizing environment, as suggested by Looman
(2003).
Table 5
Summary of Knowledge Influences and Recommendations
Knowledge Influence Knowledge Type Knowledge Recommendations
Lack comprehensive, consistent
understanding of the
challenges in advocating for
their autistic children
Declarative Provide training programs to parents
Difficulty connecting parents’
goals and objectives to the
specific needs of their child’s
advocacy
Metacognitive Organize educational meetings and
record historical videos on autism
The recommendations included in Table 5 for improving knowledge directly pertain to the
study’s findings, which emphasize the need to offer parents extensive assistance to strengthen their
advocacy endeavors for children with autism. The highlighted deficiencies in knowledge, such as
the absence of a uniform understanding of advocacy difficulties and the difficulty in aligning
personal objectives with advocacy requirements, emphasize the necessity for treatments that
surpass mere procedural and conceptual proficiency.
Training Programs
Training programs for parents should incorporate metacognitive techniques. These
programs should guide parents in applying metacognitive knowledge to navigate their child’s
distinctive challenges (Drogomyretska et al., 2020). Parents should be motivated to contemplate

45
their advocacy journey and understand that confusion and uncertainty are integral to the process,
leading to more questions, skepticism, and creative problem-solving.
Organized Meetings
Meetings and discussions should be organized to create a platform for parents to share their
experiences and insights (Koslouski & Stark, 2021). This collaborative approach encourages
parents to explore different perspectives and develop metacognitive skills. Practical examples and
case studies can be provided to demonstrate the real-life application of metacognitive knowledge.
Recorded Narratives and Videos
Additionally, recorded histories and videos can serve as valuable learning tools,
showcasing instances where metacognition has been a driving force in effective advocacy.
According to Booker (2021), by embracing these metacognitive knowledge solutions, parents
advocating for children with autism can enhance their adaptability, problem-solving abilities, and
informed decision-making throughout their advocacy journey, ensuring the best support for their
children.
Motivation Recommendations
Recommendations for strengthening parental motivation in autism advocacy listed in Table
6 illustrate the barriers that hinder parents’ motivation in their advocacy efforts for children with
autism. Clark and Estes (2008) emphasized that a positive emotional environment is crucial for
sustaining motivation. During the interviews, it became evident that many parents expressed
frustration due to the myriads of challenges they encountered. These challenges often entailed
competing priorities and struggling to effectively organize and prioritize their advocacy work
amidst constantly changing circumstances.

46
Table 6
Summary of Motivation Influences and Recommendations
Motivation Influence Principle Recommendation Context-Specific
Recommendation(s)
Self-Efficacy (Belief in
Advocacy Skills)
Enhancing parents’ belief in
their advocacy skills
(Koslouski & Stark, 2021)
Encourage participation in support
groups and workshops to build
self-confidence.
Share success stories and
testimonials from experienced
parents.
Attribution of Advocacy
Outcomes
Shaping parents’ perceptions
of the causes of advocacy
outcomes (Thunberg and
Arnell, 2022)
Conduct interviews to understand
parents’ attributions regarding
advocacy outcomes.
Provide guidance to help parents
reframe attributions positively,
emphasizing learning from
setbacks and recognizing
collective efforts in their child’s
development.
Several key strategies can be implemented to bolster parents’ motivation in advocating for
their children with autism.
Self-Efficacy Enhancement
One effective approach is to foster self-efficacy, the belief in one’s ability to advocate
effectively. Organizing regular support groups and workshops can serve as safe spaces for parents
to share their experiences, learn from others, and gain confidence in their advocacy skills
(Koslouski & Stark, 2021). Additionally, sharing success stories and testimonials from
experienced parents can provide inspiring examples of what can be achieved through effective
advocacy.

47
Attribution Reframing
Understanding parents’ perceptions of the causes of advocacy outcomes is crucial.
Conducting interviews and open dialogues with parents can facilitate this (Thunberg & Arnell,
2022). It is essential to create an environment where parents feel comfortable expressing their
thoughts and beliefs regarding their advocacy efforts and outcomes (de Villiers et al., 2022).
Furthermore, encouraging parents to view setbacks as opportunities for growth and emphasizing
the collective efforts of professionals, teachers, and therapists involved in their child’s
development can lead to a more optimistic and motivated outlook.
This study suggests that parental advocacy is an ever-changing process characterized by a
lack of certainty, seeking help, obtaining assistance, and increasing awareness. By implementing
these strategies, parents can feel more empowered, motivated, and confident in their role as
advocates for their children with autism. This, in turn, can lead to more effective and impactful
advocacy efforts, ultimately benefiting the autistic children and their development (Brunt et al.,
2023).
Organizational Recommendations
To address the organizational challenges parents face in advocating for their children with
autism, a series of strategic recommendations is essential. These recommendations aim to create a
more supportive and inclusive environment that empowers parents to advocate effectively and
access necessary resources.
Table 7 outlines the key barriers that parents commonly face when advocating for their
autistic children, as identified through qualitative interviews and supported by relevant literature.
These barriers often hinder the practical realization of advocacy goals and addressing them is
crucial for improving the support system for these parents.

48
Table 7
Summary of Organizational Influences and Recommendations
Assumed Organization Influence:
Cause, Need, or Asset Principle Recommendations Context-Specific
Recommendation(s)
Access to Services: Availability and
accessibility of support services
Availability and accessibility
of support services (Adeoye
& Olenik, 2021)
Assess the gaps in access to
support services and
collaborate with relevant
organizations to enhance
availability and accessibility.
School Systems: Education policies
and individualized plans
Analysis of education policies
and individualized plans’
impact on parental advocacy.
(Ní Bhroin & King, 2020)
Review education policies to
ensure they align with the
needs of autistic children
and support parents in their
advocacy efforts.
Healthcare Systems: Access to
medical professionals and
therapies
Assessment of access to
healthcare resources and
professionals (Mason et al.,
2019)
Identify areas with limited
access to medical
professionals and medicines
and work to improve
availability.
Support Organizations: Role and
effectiveness of parent support
organizations
Evaluation of the role and
effectiveness of parent
support organizations
(Weisenmuller & Hilton,
2021)
Collaborate with parent
support organizations to
enhance their effectiveness
in assisting parents of
children with autism.
Legal and Policy Framework:
Influence of laws on parental
rights
Examination of the impact of
legal and policy frameworks
on parental rights (Mason et
al., 2019)
Advocate for changes in
policies or rules that hinder
parental rights and advocacy
for children with autism.
Communication and Collaboration:
Stakeholder cooperation
Assessment of communication
and collaboration among
stakeholders in parental
advocacy (Weisenmuller &
Facilitate communication and
collaboration among
stakeholders to streamline
advocacy efforts.

49
Hilton, 2021)
Financial Support: Availability of
financial resources
Evaluation of available
financial resources for
parental advocacy
(Drogomyretska et al., 2020).
Identify financial gaps and
explore opportunities for
securing resources to
support parents in their
advocacy.
Cultural Competency:
Accommodating diverse families
Analysis of organizational
cultural competency in
accommodating diverse
families (Drogomyretska et
al., 2020).
Develop cultural competency
training for organizations to
better serve diverse families
advocating for children with
autism.
Policy Recommendations: Proposed
solutions to organizational
challenges
Recommendations for
addressing gaps and barriers
in administrative support
(Divan et al., 2021).
Implement policy
recommendations to
improve administrative
support for parents of
children with autism.
Empowering Advocacy through Enhanced Access to Support Services
Organizations should conduct comprehensive assessments of the availability and
accessibility of support services. Identifying gaps in service provision and collaborating with
relevant agencies and stakeholders can bridge disparities (Adeoye & Olenik, 2021). Ensuring that
essential support services are readily available to all families is crucial for empowering parents in
their advocacy efforts.
Advocating for Effective Education Policies
Organizations must critically review education policies to ensure alignment with the
diverse needs of children with autism (Ní Bhroin & King, 2020). Creating policies that facilitate
individualized education plans, accommodations, and resources is essential for empowering
parents to advocate effectively for their child’s education.

50
Improve Healthcare Access
Evaluating access to medical professionals and therapies for autistic children is essential
(Mason et al., 2019). Identifying and addressing limitations in healthcare access ensure that
necessary medical and therapeutic support is readily available for parents and their children.
Strengthen Parent Support Organizations
The role and effect of parent support organizations should be evaluated. Collaborating with
these organizations to enhance their capacity to provide valuable resources, guidance, and
emotional support to parents is vital (Weisenmuller and Hilton, 2021). Effective parent support
networks are pivotal for navigating the challenges of autism advocacy.
Advocate for Parental Rights
The impact of legal and policy frameworks on parental rights should be examined.
According to Divan et al. (2021), organizations should proactively advocate for changes in laws
and policies that may hinder parental rights and their ability to effectively provide support for their
children.
Facilitate Stakeholder Cooperation
Evaluating the communication and collaboration among various stakeholders involved in
parental advocacy is crucial. According to Weisenmuller and Hilton (2021), facilitating effective
communication and cooperation among educators, healthcare providers, support organizations, and
parents ensures a more streamlined and cohesive advocacy process.
Secure Financial Resources
Evaluating the availability of financial resources for parental advocacy is essential.
According to Drogomyretska et al. (2020), it is critical to identify gaps in financial support and
explore opportunities for securing funding or grants to assist parents in their advocacy efforts.

51
Cultural Competency Training
According to Drogomyretska et al. (2020), developing cultural competency training
programs within organizations is essential to accommodate the diverse backgrounds and nееds of
families advocating for autistic children. This ensures that all parents receive culturally sensitive
support.
Implementing these recommendations may еmpowеr parents and create a more inclusive
and supportive environment for advocating for autistic children. Organizations need to work
collaboratively to enhance the advocacy experience for these parents and, ultimately, improve the
well-being of children with autism.
Limitations and Delimitations
Limitations
Wiersma (2000) states that it is challenging to duplicate studies because qualitative research is
conducted in genuine environments. In qualitative research, a limitation is related to validity and
reliability. When selecting this study and the methods and design in which to research, there are
limitations that the researcher may have little to no control over.
The extent to which the findings of this study may be applied to a broader population may
be constrained by its specific emphasis on parents who are raising children under the age of 18
who are diagnosed with ASD. The findings of this study may not be applicable to parents who are
caring for adult autistic persons or those with different neurological challenges. Furthermore, the
process of data collecting is dependent on the self-reported data provided by parents, so
introducing the potential for self-reporting bias and the subsequent risk of inaccuracy. Moreover,
the study’s emphasis on a wide-ranging population may fail to consider geographical or cultural
disparities that might impact the difficulties encountered by parents of children with autism. The

52
obstacles faced by parents campaigning for their children with autism can be strongly influenced
by regional subtleties and cultural influences. Additionally, it is important to consider temporal
issues, since the limitations of performing this study during a certain timeframe may not
adequately portray the progressive evolution of obstacles encountered by advocates over time. As
a result, it is possible that the findings may not comprehensively capture the broader trends or
changes in the long-term scope of autism support activities. Finally, it is important to consider the
potential presence of selection bias in the recruitment process, as those who choose to participate
may be more inclined to possess a greater likelihood of having encountered difficulties and
developed perspectives via their advocacy for children with autism.
Delimitations
Delimitations outline the specific boundaries and parameters set by the researcher that
define the scope of the study. In this study, delimitations include the specific focus on parents
raising children under the age of 18 diagnosed with ASD, excluding parents of adult autistic
individuals or those with different neurological challenges. Additionally, the study is delimited to
the use of self-reported data from parents, acknowledging the potential for bias and limitations in
the accuracy of information provided. Geographical and cultural variations are also delimitations,
with the study focusing on a broad population without accounting for regional nuances and cultural
influences that may affect advocacy challenges. Finally, the study is delimited by its timeframe
constraints, which may limit the ability to capture long-term trends or changes in the challenges
faced by advocates over time.
Recommendations for Future Research
Future research should explore the complexities and nuances of the barriers faced by
parents of children with autism as they engage in advocacy. Qualitative studies would be of value

53
in explaining the emotional and psychological consequences of advocacy for parents (Salleh et al.,
2020). Focusing on coping strategies and resilience for these parents, as well as the factors that
enable them to manage in their role as advocates, would inform interventions for parents in their
access to coping resources and strategies available to them (Salleh et al., 2020). Longitudinal
research is needed to identify how the challenges of advocacy change over time, and cross-cultural
or regional analysis should help identify any regional or cultural differences in parent experiences
of advocacy (Hannon et al., 2022). Investigation of the effects of policy and support is also
essential, as are mixed methods designs and advanced analytical techniques.
The implementation of longitudinal studies that monitor the advocacy encounters of parents
with children diagnosed with autism over an extended duration would yield significant findings
regarding the progression of advocacy obstacles and approaches as children progress through
various educational and developmental phases (Hannon et al., 2022). Furthermore, the utilization
of comparative analysis has the potential to make substantial contributions by examining the
advocacy encounters of parents in diverse nations or locations characterized by distinct healthcare
and educational frameworks (Kibria & Becerra, 2021). Through the analysis of cross-cultural
variations in advocacy obstacles and support structures, scholars can acquire a more profound
comprehension of the contextual elements that impact parental advocacy.
Conducting comprehensive interviews with a varied cohort of parents of children with
autism might provide valuable perspectives on the obstacles they encounter in their endeavors to
advocate for their children (Nwora, 2023). Researchers can effectively gather varied perspectives
on advocacy problems by utilizing open-ended questions and providing parents with the
opportunity to openly communicate their experiences and feelings. Through the inclusion of
persons diagnosed with autism in the study process, a fuller comprehension of advocacy concerns

54
may be attained. The viewpoints and distinctive encounters of individuals can provide distinct
perspectives on the intricacies of advocating for those within the autistic spectrum.
An essential area of study is examining the efficacy of professionals, educators, and
support staff in advocating for children with autism inside the system. Gaining insight into the
influence of their responsibilities on the advocacy process and child outcomes can provide
valuable knowledge for enhancing support services. According to Taylor et al. (2023), intervention
studies that focus on augmenting the advocacy skills and resources accessible to parents of
children with autism can yield noteworthy consequences in terms of promoting overall well-being.
Researchers have the ability to evaluate the efficacy of treatments or programs in meeting the
varied requirements of parents and children through the process of development and testing.
A key field of future investigation is examining the involvement of siblings and extended
family members in advocacy, as well as investigating the impact of family dynamics and support
networks on advocacy efforts and outcomes. Furthermore, a comprehensive analysis of the
utilization of technology interventions, such as mobile applications or online platforms, in
bolstering parental advocacy endeavors might provide significant findings about novel strategies
for providing advocacy assistance (Taylor et al., 2023). The examination of the effects of policy
modifications pertaining to autistic spectrum disorders on advocacy endeavors and the evaluation
of the repercussions of policy changes on families’ ability to obtain resources and assistance are of
utmost importance in shaping advocacy tactics within a dynamic policy environment.
Ethical Considerations
The study is conducted with the utmost ethical considerations, including informed consent
and privacy protection. However, ethical constraints may impact the depth of data collection and
analysis. Ethical limitations within research can confine the extent of data compilation and

55
examination as they entail regulations regarding the kinds of data that are gatherable and methods
for utilization—all enacted with participant rights and welfare safeguarding purposes in mind
(Lobe et al., 2020). Despite these limitations, this research provides valuable insights into parents’
challenges in advocating for their autistic children. It offers a foundation for further studies and
informed interventions to support these families effectively.
Conclusion
In summary, this research study investigated the domain of parental advocacy for children
diagnosed with autism, providing perspectives on the complex and ever-evolving nature of such
advocacy efforts. By conducting a thorough analysis, it reveals the numerous difficulties that
parents face every day, highlighting their steadfast commitment to obtaining necessary resources
and promoting a deeper comprehension of autism in society. Significantly, the study emphasizes
the necessity of enabling parents to actively participate in decision-making processes within
healthcare environments, while arguing for customized support initiatives that address the distinct
requirements of families residing in rural regions. In anticipation of future research, this study
functions as a compelling appeal for more inquiries that encompass a wide range of viewpoints and
promote therapies designed to enhance parental advocacy abilities and cultivate self-advocacy
among individuals diagnosed with autism. In conclusion, this study not only enhances our
comprehension of the challenging process done by parents in advocating for their children with
autism, but also emphasizes the urgent necessity for ongoing investigation and advancement in this
crucial domain.
This research primarily examined the complex dynamics of parental advocacy,
emphasizing the enduring and dynamic character of this undertaking. Through an analysis of the
experiences of parents who are parenting children with autism, a rich array of difficulties emerged,

56
encompassing the navigation of intricate healthcare systems and the battle against social
misunderstandings. The results of the study aligned with the everyday challenges encountered by
parents, highlighting their ability to persevere and resolve in surmounting barriers in order to
guarantee that their children obtain the necessary assistance and resources.
The research makes a significant addition to the field by highlighting the significance of
parental engagement in decision-making processes within healthcare environments. This study
promotes a collaborative and patient-centered approach to healthcare delivery by empowering
parents and encouraging their involvement in conversations about their children’s treatment.
Furthermore, the study emphasizes the crucial significance of customized assistance initiatives
designed to meet the specific requirements of families residing in rural regions, where there may
be restricted availability of resources and services.
This study sets the stage for more inquiries aimed at expanding our comprehension of
parental advocacy from other viewpoints. Future study can provide complete insights into the
problems and possibilities of advocating for persons on the autism spectrum by incorporating the
perspectives of parents, healthcare professionals, educators, and individuals with autism
themselves. Furthermore, this research highlights the necessity of implementing treatments that
target the improvement of parental advocacy abilities and the cultivation of self-advocacy among
people diagnosed with autism. By doing so, individuals are empowered to assertively argue for
their own needs and preferences.
This research signifies a notable advancement in our collaborative endeavors to assist
families impacted by autism. By illuminating the intricate process performed by parents in
campaigning for their children, it serves as a source of inspiration for us to intensify our endeavors
in establishing a society that is more inclusive and supportive for those diagnosed with ASD. As

57
we persist in investigating and advancing in this crucial domain, may we maintain unwavering
dedication to enabling families and individuals with autism to prosper and thrive.

58
References
Adeoye‐Olatunde, O. A., & Olenik, N. L. (2021). Research and scholarly methods: Semi‐
structured interviews. Journal of the American College of Clinical Pharmacy, 4(10), 1358-
1367.
Ahmad, E. (2020). The challenges faced by the parents of autistic children in Jordan. Journal of
Education and Practice, 11(28), 74-82.
Al Jaffal, M. (2022). General education teachers face challenges regarding the inclusion of
students with autism. Frontiers in Psychology, 13, 873248.
Althiabi, Y. (2021). Attitude, anxiety and perceived mental health care needs among parents of
children with Autism Spectrum Disorder (ASD) in Saudi Arabia during COVID-19
pandemic. Research in Developmental Disabilities, 111, 103873.
Anderson, C., Butt, C., & Sarsony, C. (2021). Young adults on the autism spectrum and early
employment-related experiences: Aspirations and obstacles. Journal of autism and
developmental disorders, 51, 88-105.
Arije, O. O., Oyedun, O. O., & Omisile, I. O. (2021). Synthesizing qualitative research evidence
from complex interventions by inductive thematic content analysis using modified in-vivo
coding. Acad Lett, 2011(10.20935).
Ashcraft, L. E., Asato, M., Houtrow, A. J., Kavalieratos, D., Miller, E., & Ray, K. N. (2019).
Parent empowerment in pediatric healthcare settings: a systematic review of observational
studies. The Patient-Patient-Centered Outcomes Research, 12, 199-212.
Autism Speaks. (2021). What is Autism? www.autismspeaks.org
Bandura, A., & Locke, E. A. (2003). Negative self-efficacy and goal effects revisited. Journal of
Applied Psychology, 88(1), 87.

59
Bartolotta, T., & Rizzolo, D. (2019). Recognizing autism spectrum disorder. JAAPA, 32(8), 22-26.
Berruti, A.S., Schaaf, R.C., Jones, E.A., Ridgway, E., Dumont, R.L., Leiby, B., Sancimino, C., Yi,
M. and Molholm, S. (2022). Notes from an epicenter: navigating behavioral clinical trials
on autism spectrum disorder amid the COVID-19 pandemic in the Bronx. Trials, 23(1), 1-
9.
Bolaños-Medina, A. (2014). Self-efficacy in translation. Translation and Interpreting Studies. The
Journal of the American Translation and Interpreting Studies Association, 9(2), 197-218.
Booker, A. L. (2021). “What Do I Do Now?” A Multisystemic Parent Training Program Focusing
on Parental Advocacy, Psychoeducation, and Support for Raising a Child with Autism
Spectrum Disorder [Doctoral dissertation, Capella University].
Bougeard, C., Picarel-Blanchot, F., Schmid, R., Campbell, R., & Buitelaar, J. (2021). Prevalence
of autism spectrum disorder and co-morbidities in children and adolescents: a systematic
literature review. Frontiers in psychiatry, 12, 744709.
Brown, F. L. (2022). Urban Families Parenting a Child with Autism: A Qualitative Investigation
[Doctoral dissertation, Capella University].
Brown, G., Reed, P., & Raymond, C. M. (2020). Mapping place values: 10 lessons from two
decades of public participation GIS empirical research. Applied Geography, 116, 102156.
Brunt, S., Nevill, R., & Mazurek, M. O. (2023). Associations Among Autism Symptom Domains
and Facets of Caregiver Strain. Journal of Autism and Developmental Disorders, 1-10.
Bumann, M. and Younkin, S. (2022) Applying self-efficacy theory to increase interpersonal
effectiveness in teamwork. Journal of Invitation Theory and Practice, 18(2023).
https://doi.org/10.26522/jitp.v18i.3772

60
Burke, M. M., Lee, C. E., & Rios, K. (2019). A pilot evaluation of an advocacy program on
knowledge, empowerment, family–school partnership and parent well‐being. Journal of
Intellectual Disability Research, 63(8), 969-980.
Byrne, G., Sarma, K. M., Hendler, J., & O’Connell, A. (2018). On the spectrum, off the beaten
path. A qualitative study of Irish parents’ experiences of raising a child with autism
spectrum conditions. British Journal of Learning Disabilities, 46(3), 182-192.
Callaghan, T., & Sylvester, S. (2021). Private citizens as policy entrepreneurs: Evidence from
autism mandates and parental political mobilization. Policy Studies Journal, 49(1), 123-
145.
Centers for Disease Control and Prevention. (2022). Autism Spectrum Disorder.
Chun, J., Kuo, H. J., Curtiss, S. L., Lee, G. K., Lee, H., & Awadu, J. (2023). The interplay of
supports and challenges during the transition to adulthood for youth on the autism
spectrum. Disability and Rehabilitation, 45(18), 2879-2889.
Clark, R. E., & Estes, F. (2008). Turning research into results: A guide to selecting the right
performance solutions. https://lccn.loc.gov/2002005552
Cleary, M., West, S., & Mclean, L. (2023). From ‘refrigerator mothers’ to empowered advocates:
The evolution of the autism parent. Issues in Mental Health Nursing, 44(1), 64-70.
De Clercq, L. E., Prinzie, P., Swerts, C., Ortibus, E., & De Pauw, S. S. (2022). “Tell me about your
child, the relationship with your child and your parental experiences”: a qualitative study of
spontaneous speech samples among parents raising a child with and without Autism
Spectrum Disorder, cerebral palsy or Down syndrome. Journal of Developmental and
Physical Disabilities, 34(2), 295-329.

61
De Villiers, J., Fine, J., Ginsberg, G., Vaccarella, L., & Szatmari, P. (2007). Brief report: A scale
for rating conversational impairment in autism spectrum disorder. Journal of Autism and
Developmental Disorders, 37, 1375-1380.
Dickinson, H., Smith, C., Yates, S., & Faulkner, A. (2023). Taking the first step in an inclusive
life: Experiences of Australian early childhood education and care.
Divan, G., Bhavnani, S., Leadbitter, K., Ellis, C., Dasgupta, J., Abubakar, A., Elsabbagh, M.,
Hamdani, S.U., Servili, C., Patel, V. and Green, J., 2021. Annual Research Review:
Achieving universal health coverage for young children with autism spectrum disorder in
low‐and middle‐income countries: A review of reviews. Journal of Child Psychology and
Psychiatry, 62(5), 514-535.
Douglas, B. D., Ewell, P. J., & Brauer, M. (2023). Data quality in online human-subjects research:
Comparisons between MTurk, Prolific, CloudResearch, Qualtrics, and SONA. Plos one,
18(3), e0279720.
Drogomyretska, K., Fox, R., & Colbert, D. (2020). Brief report: stress and perceived social support
in parents of children with ASD. Journal of autism and developmental disorders, 50, 4176-
4182.
Drüsedau, L. L., Götz, A., Kleine Büning, L., Conzelmann, A., Renner, T. J., & Barth, G. M.
(2023). Tübinger Training for Autism Spectrum Disorders (TüTASS): a structured group
intervention on self-perception and social skills of children with autism spectrum disorder
(ASD). European Archives of Psychiatry and Clinical Neuroscience, 1-15.
Duggineni, M. (2023). Deep learning for neurodegenerative disorder (2016 to 2022): A systematic
review. Biomedical Signal Processing and Control, 80, 104223.

62
Ewles, G., Clifford, T., & Minnes, P. (2014). Predictors of advocacy in parents of children with
autism spectrum disorders. Journal on Developmental Disabilities, 20(1), 73.
Francis, K., Karantanos, G., Al-Ozairi, A., & AlKhadhari, S. (2021). Prevention in autism
spectrum disorder: A lifelong focused approach. Brain Sciences, 11(2), 151.
Friedlander, R., & Proulx, F. (2023). Autism: Current practices and controversies. We’re here
when you’re ready. BC Medical Journal, 65(8) 283-290.
Goldman, S. E., Burke, M. M., Casale, E. G., Frazier, M. A., & Hodapp, R. M. (2020). Families
requesting advocates for children with disabilities: The who, what, when, where, why, and
how of special education advocacy. Intellectual and developmental disabilities, 58(2), 158-
169.
Hannon, L., & O’Donnell, G. M. (2022). Teachers, parents, and family-school partnerships:
emotions, experiences, and advocacy. Journal of Education for Teaching, 48(2), 241-255.
Hays, D. G., & McKibben, W. B. (2021). Promoting rigorous research: Generalizability and
qualitative research. Journal of Counseling & Development, 99(2), 178-188.
Heney, R. (2023). dis/Humanity and Autism: Dehumanizing and Rehumanizing [Doctoral
dissertation, University of Saskatchewan].
Holmes, A. (2020). Researcher positionality: A consideration of its influence and place in
qualitative research - A new researcher guide.” Shanlax International Journal of
Education, 8(4), 1-10. https://nces.ed.gov/
James, S. N., & Smith, C. J. (2020, October). Early autism diagnosis in the primary care setting. In
Seminars in Pediatric Neurology, 35, 100827. WB Saunders.
Kanner, L. (1971). Follow-up study of eleven autistic children originally reported in 1943. Journal
of autism and childhood schizophrenia, 1(2), 119-145.

63
Katrompas, A., & Metsis, V. (2021, January). Rate my professors: A study of bias and
inaccuracies in anonymous self-reporting. In 2021 2nd International Conference on
Computing and Data Science (CDS) pp. 536-542). IEEE.
Kibria, N., & Becerra, W. S. (2021). Deserving immigrants and good advocate mothers: Immigrant
mothers’ negotiations of unique education systems for children with disabilities. Social
problems, 68(3), 591-607.
Koslouski, J. B., & Stark, K. (2021). Promoting learning for students experiencing adversity and
trauma: the everyday, yet profound, actions of teachers. The Elementary School Journal,
121(3), 430-453.
Krathwohl, D. R. (2022). A revision of Bloom’s taxonomy: An overview. Theory into Practice,
41(4), 212–218. https://doi.org/10.1207/s15430421tip4104_2
Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the
neurodiversity movement: Implications for autism early intervention research and practice.
Frontiers in Psychology, 12, 782.
Lee, H., Lee, G. K., Chun, J., Kuo, H. J., Curtiss, S. L., & Okyere, C. (2023). Perspectives of
autistic emerging adults, parents, and practitioners on transitioning to adulthood. Journal of
Child and Family Studies, 32(3), 938-950.
Lobe, B., Morgan, D., & Hoffman, K. A. (2020). Qualitative data collection in an era of social
distancing. International journal of qualitative methods, 19, 1609406920937875.
Locke, J., Ibanez, L. V., Posner, E., Frederick, L., Carpentier, P., & Stone, W. L. (2020). Parent
perceptions about communicating with providers regarding early autism concerns.
Pediatrics, 145(Supplement_1), S72-S80.

64
Locke, K. D., & Bandura, G. E. (2003). Self-perceptions, parent-perceptions, and meta-perceptions
of the interpersonal efficacy of adolescents with autism spectrum disorder. Research in
Autism Spectrum Disorders, 31, 19-29.
Looman, M. D. (2003). Reflective leadership: strategic planning from the heart and soul.
Consulting Psychology Journal: Practice and Research, 55(4), 215–221.
https://doi.org/10.1037/1061-4087.55.4.215
Luelmo, P., Kasari, C., & Fiesta Educativa, Inc (2021). Randomized pilot study of a special
education advocacy program for Latinx/minority parents of children with autism spectrum
disorder. Autism: the international journal of research and practice, 25(6), 1809–1815.
https://doi.org/10.1177/1362361321998561
Lunenburg, P., (2011). Limitations in social anticipation are independent of imaginative and
Theory of Mind abilities in children with autism but not in typically developing
children. Autism, 19(5), 604-612.
Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown,
T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of what
barriers and facilitators prevent and enable physical healthcare services access for autistic
adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400.
https://doi.org/10.1007/s10803-019-04049-2
McCabe, H. (2007). Parent advocacy in the face of adversity: Autism and families in the People’s
Republic of China. Focus on Autism and Other Developmental Disabilities, 22(1), 39-50.
McDougal, E., Riby, D., Hanley, M. (2020). Teacher insights into the challenges and facilitators of
learning in autism. Research in Autism Spectrum Disorders, 79, 2020, 101674, ISSN 1750-
9467, https://doi.org/10.1016/j.rasd.2020.101674.

65
Morgan, B. R., (2018). Characterization of autism spectrum disorder across the age span by
intrinsic network patterns. Brain Topography, 32, 461-471.
Nazeer, A., Hashemi, N., Imran, N., & Azeem, M. W. (2019). Autism spectrum disorder: a
concept in evolution. Psychiatric Annals, 49(3), 103-108.
Ní Bhroin, Ó., & King, F. (2020). Teacher education for inclusive education: a framework for
developing collaboration for the inclusion of students with support plans. European
Journal of Teacher Education, 43(1), 38-63.
Nwora, C. (2023). Qualitative Case Study of Parental Engagement of Immigrant Parents From
West Africa Who Have Children With Special Needs [Doctoral dissertation, Northcentral
University].
Onwukwe-Nwagwu, N. C. (2022). Perceived Support Needs of Families of Children with Autism:
A Qualitative Descriptive Study [Doctoral dissertation, Northcentral University].
Opie, C. (2019). Research approaches. Getting Started in Your Educational Research: Design,
Data Production and Analysis, 137.
Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism
spectrum disorder: A qualitative study. Brain sciences, 11(3), 309.
Pearson, J. N., & Meadan, H. (2021). FACES: An advocacy intervention for African-American
parents of children with autism. Intellectual and developmental disabilities, 59(2), 155-171.
Raj, A., & Ambily, P. (2021). Critical analysis for a comprehensive framework.
Reinholz, D. L., & Andrews, T. C. (2020). Change theory and theory of change: What is the
difference anyway? International Journal of STEM Education, 7(1), 1-12.

66
Rios, K., & Burke, M. M. (2021). Facilitators and challenges to positive exceptional education
experiences and health among Latino families of children with disabilities: Two systematic
literature reviews. Review Journal of Autism and Developmental Disorders, 8, 299-311.
Rivard, M., Morin, D., Coulombe, P., Morin, M., & Mello, C. (2023). The diagnostic period for
Autism: Risk and protective factors for Family Quality of Life in Early Childhood. Journal
of Autism and Developmental Disorders, 53(10), 3755-3769.
Rivers, M. L., Dunlosky, J., & Persky, A. M. (2020). Measuring metacognitive knowledge,
monitoring, and control in the pharmacy classroom and experiential settings. American
Journal of Pharmaceutical Education, 84(5).
Rowe, W. E. (2014). Positionality. In D. Coghlan, & M. Brydon-Miller, (Eds.), The SAGE
encyclopedia of action research. Sage.
Rowland, D. (2020). Redefining autism. Journal of Neurology, Psychiatry and Brain Research,
2020(01).
Ruck, L. (2020). Ethics in research: What is the IRB? University of Indiana. Conversations in
Science at Indiana University.
Salleh, N. S., Abdullah, K. L., Yoong, T. L., Jayanath, S., & Husain, M. (2020). Parents’
experiences of affiliate stigma when caring for a child with autism spectrum disorder
(ASD): A meta-synthesis of qualitative studies. Journal of Pediatric Nursing, 55, 174-183.
Sapiets, S. J., Totsika, V., & Hastings, R. P. (2021). Factors influencing access to early
intervention for families of children with developmental disabilities: A narrative review.
Journal of Applied Research in Intellectual Disabilities, 34(3), 695-711.

67
Schnabel, A., Youssef, G. J., Hallford, D. J., Hartley, E. J., McGillivray, J. A., Stewart, M., ... &
Austin, D. W. (2020). Psychopathology in parents of children with autism spectrum
disorder: A systematic review and meta-analysis of prevalence. Autism, 24(1), 26-40.
Stachowiak, E. K. (2013). Maternal obesity induced by a high fat diet causes altered cellular
development in fetal brains suggestive of a predisposition of offspring to neurological
disorders in later life. Metabolic brain disease, 28, 721-725.
Sefotho, M. M., & Onyishi, C. N. (2021). Transition to Higher Education for Students with
Autism: Challenges and Support Needs. International Journal of Higher Education, 10(1),
201-213.
Shahzadi, M., Yousaf, A., Ashraf, L., Abbas, S., & Latif, F. (2023). Development and Validation
of Indigenous Measure of Maternal Tolerance in Children with Autism. Journal of
Behavioural Sciences, 33(2), 94.
Shattnawi, K. K., Bani, Saeed, W. A. M., Al-Natour, A., Al-Hammouri, M. M., Al-Azzam, M., &
Joseph, R. A. (2021). Parenting a child with autism spectrum disorder: Perspective of
Jordanian mothers. Journal of Transcultural Nursing, 32(5), 474-483.
Sherifi, E. (2021). The impact of the autistic child on his family. BJES, 1.
Simon, D., & Goes, B. A. (2012). Verbal ability, social stress, and anxiety in children with autistic
disorder. Autism, 16(2), 123-138.
Smith, J., Rabba, A. S., Cong, L., Datta, P., Dresens, E., Hall, G., Heyworth, M., Lawson,
W., Lee, P., Lilley, R., Syeda, N., Ma, E., Wang, J., Wang, R., Yeow, C., & Pellicano, E.
(2022). “They Were Saying That I Was a Typical Chinese Mum”: Chinese parents’
experiences of parent-teacher partnerships for their autistic children. Journal of Autism and
Developmental Disorders, 1-13.

68
Snell-Rood, C., Ruble, L., Kleinert, H., McGrew, J. H., Adams, M., Rodgers, A., Odom, J., Wong,
W. H., & Yu, Y. (2020). Stakeholder perspectives on transition planning, implementation,
and outcomes for students with autism spectrum disorder. Autism, 24(5), 1164-1176.
Sterwald, C., & Baker, J. (2019). Frosted intellectuals: How Dr. Leo Kanner constructed the
autistic family. Perspectives in biology and medicine, 62(4), 690-709.
Stošić, J., Frey Škrinjar, J., & Preece, D. (2020). Families of children on the autism spectrum:
experience of daily life and impact of parent education. Support for Learning, 35(2), 205-
221.
Szlamka, Z., Tekola, B., Hoekstra, R., & Hanlon, C. (2022). The role of advocacy and
empowerment in shaping service development for families raising children with
developmental disabilities. Health Expectations, 25(4), 1882-1891.
Tanner, A., & Dounavi, K. (2021). The emergence of autism symptoms before 18 months of age:
A systematic literature review. Journal of Autism and Developmental Disorders, 51(3),
973-993.
Taylor, J. L., DaWalt, L. S., Burke, M. M., Slaughter, J. C., & Xu, M. (2023). Improving parents’
ability to advocate for services for youth with autism: A randomized clinical trial. Autism
Research, 16(10), 1976-1988.
Thunberg, S., & Arnell, L. (2022). Pioneering the use of technologies in qualitative research–A
research review of digital interviews. International Journal of Social Research
Methodology, 25(6), 757-768.

69
Tomaszewski, L. E., Zarestky, J., & Gonzalez, E. (2020). Planning qualitative research: Design
and decision making for new researchers. International Journal of Qualitative Methods, 19,
1609406920967174.
van Schalkwyk, G. I., & Dewinter, J. (2020). Qualitative research in the journal of autism and
developmental disorders. Journal of Autism and Developmental Disorders, 50, 2280-2282.
Vorlíček, R. (2023). Inclusion of a pupil with autism spectrum disorder in mainstream education in
the Czech Republic. European Journal of Special Needs Education, 38(3), 440-449.
Walton, K. M., & Tiede, G. (2020). Brief report: Does “healthy” family functioning look different
for families who have a child with autism? Research in Autism Spectrum Disorders, 72,
101527.
Weisenmuller, C., & Hilton, D. (2021). Barriers to access, implementation, and utilization of
parenting interventions: Considerations for research and clinical applications. American
Psychologist, 76(1), 104.
Wiersma, D. (2008). Brief report: Adults with mild autism spectrum disorders (ASD): Scores on
the autism spectrum quotient (AQ) and comorbid psychopathology. Journal of Autism and
Developmental Disorders, 38, 176-180.
Wilson, M., Whelan, T., Milne, L., Hamilton, D., Jacobs, D., & Pilkington, P. (2021). A thematic
analysis of influences on parents’ autism intervention decisions. Research in
Developmental Disabilities, 117, 104035.
Wright Stein, S., Alexander, R., Mann, J., Schneider, C., Zhang, S., Gibson, B. E., Gabison, S.,
Jachyra, P., & Mosleh, D. (2022). Understanding disability in healthcare: exploring the
perceptions of parents of young people with autism spectrum disorder. Disability and
rehabilitation, 44(19), 5623–5630. https://doi.org/10.1080/09638288.2021.1948114

70
Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A., Shih, A.,
& Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism
Research, 15(5), 778-790.

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Appendix A
Interview Protocols
Interview Protocol Interviewee (Name and Title): ___________________________________
Identifier: _____________________________
Date: ________________________________
Script
“Would you mind if I recorded our discussion?”
“Good morning/afternoon! Thank you so much for agreeing to meet and participate in my
research. I am interviewing parents of children with autism to identify what challenges they face
when advocating for their child. If you agree, I wanted to spend some time going through your
role, background, the challenges you face to advocate for your child with autism, the solutions you
may think would be helpful, and learning more in terms of the support you need. Typically, these
interviews are recorded, and I wanted to ensure you were comfortable with that. Are you good to
move forward with the interview? Please know that this conversation is completely confidential,
and your personal information will not be available to anybody else but me. I have leveraged my
laptop to gather data, which is pin-protected. I am the only person with the pin. The recording of
these interviews will not be kept or destroyed following my research. The purpose of recording is

72
to ensure I accurately represent your responses and answers in my paper. Do you have any
questions?”
Research Questions
1. How do parents perceive the challenges they encounter in advocating for the needs of
their children with autism?
2. What strategies do parents employ to overcome these challenges in advocating for
autistic children?
3. How do parents perceive the role of organizations (e.g. non-profit organizations,
government agencies, schools and educational institutions) when advocating for
children with autism?
Interview Questions
• What obstacles have you faced in championing the cause of your child with autism?
• How have you endeavored to overcome these hurdles and advocate successfully?
• Have you encountered any complications when dealing with legal or administrative
processes while advocating for your child’s needs?
• In managing both the emotional burden of advocating for your child and fulfilling other
responsibilities, how do you cope?
• To what extent does the support provided by your child’s school impact your advocacy
endeavors, and what form does it take?
• Have there been any communication challenges with educators or other professionals
involved in your child’s education that you have come across?
• Have financial constraints posed difficulties in pursuing effective advocacy measures for
your child?

73
• Are there any resources or tools that, in your opinion, would augment your ability to
advocate on behalf of your child more effectively?
• How do you balance exerting effort towards advocacy and attending to other elements of
life like work and family obligations?
• Drawing upon personal experiences, what advice would you offer to fellow parents
navigating through the hardships associated with advocating on behalf of their children
with autism?
Parent Information
Parent/Guardian (A) Name:
Last:___________________________First________________________________
Relationship to Student : _________Student Date of Birth:_________________________
Address:________________________________________________________________
City:__________State:______________Zipcode:_______________County:__________
Ethnicity (optional)_____________________Gender(optional)_______________________
Contact Info: Home Phone: ___________________________
Cell Phone: ______________________E-mail: ____________________________________
Number of Children: _________________ Education: What is the highest degree or level of
school you have completed? Diploma Bachelor’s Degree Master’s Degree Doctorate
Form completed by: _______________________________________________________
(Signature)

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Asset Metadata

Creator Bravo, Alexandria I. (author)

Core Title Examining the challenges faced by parents of children with autism in their advocacy efforts: a field study

School Rossier School of Education

Degree Doctor of Education

Degree Program Organizational Change and Leadership (On Line)

Degree Conferral Date 2024-05

Publication Date 06/13/2024

Defense Date 06/12/2024

Publisher Los Angeles, California (original), University of Southern California (original), University of Southern California. Libraries (digital)

Tag advocacy,autism,diversity,Education,inclusion,Love,OAI-PMH Harvest,support,understanding

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Language English

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Advisor Combs, Wayne (committee chair), Hirabayashi, Kimberly (committee member), Tobey, Patricia (committee member)

Creator Email aibravo@usc.edu,alexandriabravo@gmail.com

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