Understanding the Lived Experiences of Autistic Adults

Author

Sneha Kohli Mathur, Chapman UniversityFollow

Date of Award

Summer 8-2021

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Education

First Advisor

Scot Danforth

Second Advisor

Lilia Monzo

Third Advisor

Phil Ferguson

Abstract

Although there is a plethora of autism-related research, 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, I conducted a narrative study through a social model of disability lens and centered voices of autistic individuals. The narrative component of this research allowed readers to understand the subjective experiences of individuals directly from the source. 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. By using grounded theory analysis, these themes were contextualized via theories of neurodiversity paradigm and monotropism theory to better understand autistic experiences and needs. Furthermore, Milton’s (2012) double empathy problem reconceptualizes autistic experiences as a mutual lack of understanding of other’s behaviors by neurodiverse and neurotypical people, and the appropriate form of treatment would be to work toward understanding these dichotomous behaviors. 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 neurodiverse about problems that the social and cultural worlds present them with, thereby moving toward a more socially just society.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

Recommended Citation

Mathur, S. K. (2021). Understanding the lived experienced of autistic adults. [Doctoral Dissertation, Chapman University]. Chapman University Digital Commons. https://doi.org/10.36837/chapman.000296