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Understanding the Lived Experiences of Autistic Adults New edition [Mīkstie vāki]

  • Formāts: Paperback / softback, 228 pages, height x width: 225x150 mm, weight: 355 g, 6 Illustrations
  • Sērija : Disability Studies in Education 27
  • Izdošanas datums: 25-Jan-2023
  • Izdevniecība: Peter Lang Publishing Inc
  • ISBN-10: 143319919X
  • ISBN-13: 9781433199196
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  • Mīkstie vāki
  • Cena: 39,11 €
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  • Pievienot vēlmju sarakstam
  • Formāts: Paperback / softback, 228 pages, height x width: 225x150 mm, weight: 355 g, 6 Illustrations
  • Sērija : Disability Studies in Education 27
  • Izdošanas datums: 25-Jan-2023
  • Izdevniecība: Peter Lang Publishing Inc
  • ISBN-10: 143319919X
  • ISBN-13: 9781433199196
Citas grāmatas par šo tēmu:
"Research related to transition and support needs for autistic adults remains limited. The purpose of this study was to understand the hopes, dreams, aspirations, challenges, and lived experiences of autistic adults. Academic literature has largely emphasized autism as a medical deficit, and use of first-person narratives to understand needs of people on the autism spectrum is rare. To fill this gap, this narrative study was conducted through a social model of disability lens and centered voices of autistic individuals. This research recognized that only someone who is autistic can be considered a true expert on autism; thus, it is imperative researchers consult with and collaborate with autistic individuals to develop the most useful support services possible. By including autistic people in research design, implementation, and support services, academics and therapists can learn from the neurodivergent about problems that the social and cultural worlds present them with, thereby moving toward a more socially just society. 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"--

Research related to transition and support needs for autistic adults remains limited. The purpose of this study was to understand the hopes, dreams, aspirations, challenges, and lived experiences of autistic adults. Academic literature has largely emphasized autism as a medical deficit, and use of first-person narratives to understand needs of people on the autism spectrum is rare. To fill this gap, this narrative study was conducted through a social model of disability lens and centered voices of autistic individuals. This research recognized that only someone who is autistic can be considered a true expert on autism; thus, it is imperative researchers consult with and collaborate with autistic individuals to develop the most useful support services possible. By including autistic people in research design, implementation, and support services, academics and therapists can learn from the neurodivergent about problems that the social and cultural worlds present them with, thereby moving toward a more socially just society.

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



This book details a narrative study conducted through a social model of disability lens that centers voices of autistic individuals. By including autistic people in research design, implementation, and support services, academics and therapists can learn from the neurodivergent and move toward a more socially just praxis.

Recenzijas

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. Its 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 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

List of Tables
ix
List of Figure
xi
List of Abbreviations
xiii
Acknowledgments xv
I Introduction to Literature, Theoretical Framework, and Methodology
1 Introduction
3(20)
Background
4(2)
Adulthood and Autism
6(3)
Literature Review
9(7)
Autobiographical Research
16(2)
Study Objectives
18(3)
Conclusion
21(2)
2 Methodology and Theoretical Framework
23(34)
Trustworthiness
25(4)
Research Questions
29(1)
Theoretical Framework: Social Model of Disability
29(4)
Methodological Frameworks
33(1)
Narrative Inquiry
33(4)
Disability Life Writing
37(1)
Data Collection
38(2)
Data Analysis
40(8)
Constant Comparison Model
48(2)
Researcher Positionality
50(3)
Conclusion
53(4)
II Redefining Experts: Adam's Story
3 Childhood Memories
57(6)
4 Adolescence
63(10)
5 Transitioning to Adulthood
73(12)
College Experiences
74(4)
Employment
78(4)
Living Alone
82(3)
6 Life in Orange County, California
85(24)
Employment
89(12)
Friendships and Romantic Relationships
101(4)
Relationship With Parents
105(1)
Concluding Thoughts
106(3)
III What Does This Mean?
7 A Thematic Analysis of Adam's Story and Autobiographical Accounts
109(68)
Isolation
111(19)
Mental Health
117(5)
Societal Expectations
122(6)
Medical Treatment and Diagnosis
128(2)
Influence of Parents
130(6)
Differences in Needs: Examples From Education and Employment
136(14)
Examples From Education
138(7)
Examples From Employment
145(4)
Differences in Needs
149(1)
Empowerment
150(15)
Understanding One's Own Behaviors Through ASD Diagnosis...
156(9)
Relationships
165(9)
Friendships
166(4)
Romantic Relationships
170(3)
Parenting
173(1)
Conclusion
174(3)
8 Findings
177(16)
Neurodiversity Paradigm
178(7)
Monotropism Theory
185(8)
9 Discussion and Conclusion
193(24)
Research Questions and Interpretation of Findings
194(3)
Isolation (Mental Health, Societal Expectations, Medical Treatment and Diagnosis)
195(1)
Influence of Parents
196(1)
Differences in Needs: Examples From Education and Employment
196(1)
Empowerment (Understanding Behavior via ASD Diagnosis, Sensory Experiences)
197(1)
Relationships (Friendships, Romantic Relationships, Parenting)
197(1)
Recommendations From Autistic Authors
197(11)
So What?
208(4)
Researchers
209(1)
Teachers, Therapists, Psychologists, and Psychiatrists
209(1)
Parents and Families
210(1)
General Society
210(1)
Board Certified Behavior Analysts
211(1)
Limitations of Study
212(1)
Future Research
213(1)
Significance of Study
214(1)
Call to Action
215(2)
References 217(8)
About the Authors 225
Sneha Kohli Mathur, Ph.D., BCBA is a faculty member in the Psychology Department of the University of Southern California. Sneha started Spectrum Success, LLC in order to support individuals on the autism spectrum, while educating "neuro typicals" on how to create a socially inclusive community. What makes Snehas research, teaching, and consulting unique is her expertise in two very distinct areas, applied behavior analysis and disabilities studies.









Adam Paul Valerius, Autistic Advocate, is a young adult who was diagnosed with Asperger Syndrome at the age of 12. Enthusiastic, keen to learn, and very insightful as to how his Asperger Syndrome effects his struggles with employment, Adam is excited for the opportunity to help others on the Autism Spectrum.