Understanding the Lived Experiences of Autistic Adults
Summary
This study included both academic literature and autobiographies written by autistic authors. The coauthor in this study is also an autistic adult who presented his life experiences for a central narrative. In contrast to the Diagnostic and Statistical Manual of Mental Disorders (DSM), which conceptualizes autism as a list of deficits, a number of powerful themes emerged from analysis of autistic authors’ lives: Isolation, Influence of Parents, Differences in Needs: Education and Employment, Empowerment, and Relationships. These themes were contextualized via theories of neurodiversity paradigm, monotropism theory, and the double empathy problem, to better understand autistic experiences and needs.
“Mathur and Valerius provide an articulate view into the lived experiences of individuals diagnosed with autism spectrum disorder. As an ABA practitioner and scholar, it made me think deeply about how clinicians may go about the implementation of compassionate ABA services. This book is a timely and significant contribution relevant for anyone with that goal in mind.”—Adel C. Najdowski, PhD, BCBA-D, Program Director, MS Applied Behavior Analysis, Pepperdine University, Los Angeles, California
“Adam and Sneha have created a beautiful and very much-needed book. Reading this book brings me hope. While my lived experience is different than that of Adam, I see so many recurring themes in my own life and in the lives of the learners who I support. The combination of narrative and research is engaging and makes a convincing argument for qualitative, lived-experience research. This work is mirrored by current and emerging research on Community-Informed Practice and Neurodiversity Affirming Practice. It is my opinion that this book needs to be included as essential reading for any person, autistic and allistic, who interacts with autistics (which really is everyone). But this book should be included in the required reading for any person who provides support for autistics in any setting.”—Brian Middleton, M.Ed., IBA, BCBA, LBA, The “Bearded Behaviorist,” Autistic Advocate
“Dr. Mathur and Mr. Valerius have crafted a critical and engaging book that amplifies the voices of autistics through vibrant qualitative research. As a psychologist, I found this to be enlightening, highly educational and a vital contribution to the literature as it addresses the lack of representation of autistic voices. It’s an insightful and useful tool and an essential addition to any clinician's library. As a mother of an autistic child and consumer of ABA services, this encouraging book resonates with me on a personal level, and I believe it is required reading for anyone who loves, works with and supports autistics, particularly if ABA is part of their journey.”—Madeeha Mir, Ph.D., Counseling Psychologist and Instructor, New York University
Excerpt
Table Of Contents
- Cover
- Advance Praise
- Title
- Copyright
- About the authors
- About the book
- This eBook can be cited
- Contents
- List of Tables
- List of Figure
- List of Abbreviations
- Acknowledgments
- I. Introduction to Literature, Theoretical Framework, and Methodology
- 1. Introduction
- Background
- Adulthood and Autism
- Literature Review
- Autobiographical Research
- Study Objectives
- Conclusion
- 2. Methodology and Theoretical Framework
- Trustworthiness
- Research Questions
- Theoretical Framework: Social Model of Disability
- Methodological Frameworks
- Narrative Inquiry
- Disability Life Writing
- Data Collection
- Data Analysis
- Constant Comparison Model
- Researcher Positionality
- Conclusion
- II. Redefining Experts: Adam’s Story
- 3. Childhood Memories
- 4. Adolescence
- 5. Transitioning to Adulthood
- College Experiences
- Employment
- Living Alone
- 6. Life in Orange County, California
- Employment
- Friendships and Romantic Relationships
- Relationship With Parents
- Concluding Thoughts
- III. What Does This Mean?
- 7. A Thematic Analysis of Adam’s Story and Autobiographical Accounts
- Isolation
- Mental Health
- Societal Expectations
- Medical Treatment and Diagnosis
- Influence of Parents
- Differences in Needs: Examples From Education and Employment
- Examples From Education
- Examples From Employment
- Differences in Needs
- Empowerment
- Understanding One’s Own Behaviors Through ASD Diagnosis
- Relationships
- Friendships
- Romantic Relationships
- Parenting
- Conclusion
- 8. Findings
- Neurodiversity Paradigm
- Monotropism Theory
- 9. Discussion and Conclusion
- Research Questions and Interpretation of Findings
- Isolation (Mental Health, Societal Expectations, Medical Treatment and Diagnosis)
- Influence of Parents
- Differences in Needs: Examples From Education and Employment
- Empowerment (Understanding Behavior via ASD Diagnosis, Sensory Experiences)
- Relationships (Friendships, Romantic Relationships, Parenting)
- Recommendations From Autistic Authors
- So What?
- Researchers
- Teachers, Therapists, Psychologists, and Psychiatrists
- Parents and Families
- General Society
- Board Certified Behavior Analysts
- Limitations of Study
- Future Research
- Significance of Study
- Call to Action
- References
- About the Authors
List of Tables
Table 1. Academic Literature Search Results
Table 2. Neurodiversity Paradigm
Table 4. Demographic Information
Table 5. Advice from Autistics About Autism
←ix | x→List of Abbreviations
|
Abbreviation |
Meaning |
|---|---|
|
ABA ACLU |
Applied Behavior Analysis American Civil Liberties Union |
|
ADD |
Attention Deficit Disorder |
|
ADHD |
Attention Deficit Hyperactivity Disorder |
|
ASD |
Autism Spectrum Disorder |
|
AS |
Asperger Syndrome |
|
DoR |
Department of Rehabilitation |
|
DS |
Disability Studies |
|
DSM |
Diagnostic and Statistical Manual of Mental Disorders |
|
HCBDDS |
Hamilton County Board of Developmental Disabilities Services |
|
HFA |
High Functioning Autism |
|
ICC |
Intensive Care Center |
|
ICD-10 |
International Statistical Classification of Diseases |
|
IEP |
Individualized Education Plan |
|
IRB |
Internal Review Board |
|
JVS |
Jewish Vocational Services |
|
MDC |
My Day Counts |
|
NAMI |
National Alliance of Mental Illness |
|
NOS |
Not Otherwise Specified |
|
NT |
Neurotypical |
|
PDD-NOS |
Pervasive Developmental Disorder-Not Otherwise Specified SBH Severely Behaviorally Handicapped |
|
TAG |
Talented and Gifted |
Acknowledgments
Sneha
My successes during my professional career thus far have, in large part, been due to support and encouragement of my family, friends, peers, and colleagues. To Adam, coauthor of this study, I am humbled you trusted me with your story and feel privileged to have learned from you and work alongside you. You are a resourceful and hardworking person, and the courage you have shown by sharing your story is inspirational.
To my professional and personal mentors and advisors, who helped shape my understanding of the academic world in so many ways, I thank you for helping me develop skills I need to better myself as a researcher and clinician: Dr. Scot Danforth, Dr. Lilia Monzo, Dr. Amy Jane Griffiths, Dr. Dawn Hunter, Dr. Jonathan Tarbox, Kristine Rodriguez, Dr. Cynthia Woelfel, Dr. Madeeha Mir, and Dr. Peter Gerhardt.
To my family, I would not be who I am or where I am without you. Mom and Dad, you have always encouraged me to follow my dreams, and when I tell you my new goals, your response is always, how can we ←xv | xvi→help? You have set an example for me on how to work hard to achieve my dreams, to value and appreciate everything I have earned, and to also appreciate the journey. You have instilled in me a strong work ethic and, perhaps most importantly, you have taught me the importance of having work–life balance. To my sister, Sonali, you have dealt with more in the last year than many people have to deal with in a lifetime. I admire your strength, resilience, honesty, and commitment to working toward causes you believe in. Your work ethic is unparalleled and the passion you have toward creating an equitable future for today’s youth is inspirational. Thank you for your continual love and support. Sister Code!
To my husband, Neil, I dream many dreams, but with you by my side I know those dreams can come true. Thank you for the sacrifices you’ve made so I can achieve my dreams, for encouraging me and pushing me to continue working when I wanted to give up, and, most of all, for never doubting I could achieve this milestone. To the cosmos and back. Finally, to my son, Rohan, amid a global pandemic, you had to share your mommy with writing this book and I am so proud of how you handled the many sudden transitions over the last 2 years. I am continually amazed by your humor, compassion, and desire to include everyone in your activities.
Seeing the world through your eyes is truly my life’s greatest privilege. My hope for you is that you grow up in, and contribute to, an inclusive world that values everyone’s differences.
Adam
The process of this book was overwhelming for me, many-a-time, because of the memories I had to recall to put together this work of art. I get told that I am an inspiration and I bring hope to mental health consumers, and autism parents. What I hope to achieve by sharing my story is to spread that same hope to a broader range of people who I may never meet face to face. When I tell some people what I’m doing with my life they admit they didn’t think someone with this condition could do most of these things because the media stereotypes and ←xvi | xvii→portrayal of autism. I want to break the stereotypes. I am writing this book with Sneha, who to me represents an autism advocate. I want to educate people how difficult it actually is for someone with autism to be accepted in the neurotypical mainstream workplace and society. I feel more catharsis from legitimizing my story by writing a book rather than posting on social media where I usually get ignored or attacked. Sneha helped me put my story into words and I am proud of my story and my life.
Details
- Pages
- XX, 228
- ISBN (PDF)
- 9781433199172
- ISBN (ePUB)
- 9781433199189
- ISBN (Softcover)
- 9781433199196
- DOI
- 10.3726/b20299
- Language
- English
- Publication date
- 2023 (January)
- Keywords
- Autism Spectrum Disorder Autistic Adults Neurodivergent Neurodiversity Monotropism Inclusion Double Empathy Problem Neurotypical Social Model of Disability Medical Model of Disability Lived Experiences Understanding the Lived Experiences of Autistic Adults Sneha Kohli Mathur Adam Paul Valerius
- Published
- New York, Berlin, Bruxelles, Lausanne, Oxford, 2023. XX, 228 pp., 1 b/w ill., 5 tables.
