Journal article
Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion
Autism : the international journal of research and practice
18 Nov 2024
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Autism research and services have historically focused on individuals with a formal autism diagnosis. However, activists and self-advocates in the United States recognize that there are financial and clinical barriers impeding access to formal diagnostic evaluations for autism. Research also suggests that groups on the margins of autism, specifically those who are not White, young, or assigned male at birth, receive later diagnoses, if diagnosed at all. In particular, individuals who are autistic and LGTBQ+ are likely to not be afforded opportunities to be assessed and diagnosed. We conducted interviews with 65 queer and transgender autistic adults who either self-identified as autistic or had a formal autism diagnosis about their experiences with and perceptions of autism diagnosis. We found that participants derived a sense of meaning and affirmation from their autistic diagnosis and/or identity, faced significant barriers and deterrents to diagnosis, and experienced invalidation as both a barrier to and product of diagnosis. We argue that self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people. We offer recommendations for research and services, specifically that many should not require formal autism diagnoses of participants. Lay abstract Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.
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Details
- Title
- Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion
- Creators
- Katherine Ardeleanu - Drexel UniversityHillary Steinberg - Drexel UniversityTamara Garfield - Drexel UniversitySamuelle Voltaire - Drexel UniversityLindsay Shea - Drexel UniversityMaci Brown - Drexel UniversityKyle Chvasta - Drexel UniversityCatherine Do Tan - Vassar College
- Publication Details
- Autism : the international journal of research and practice
- Publisher
- Sage
- Number of pages
- 12
- Grant note
- Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS): UT6MC45902
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Eagles Autism Challenge provided material support and funding for this research. This project was supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) under cooperative agreement UT6MC45902 Autism Transitions Research Project. The information, content, and/or conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the US Government.
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute
- Web of Science ID
- WOS:001356714500001
- Scopus ID
- 2-s2.0-85209649164
- Other Identifier
- 991021961702304721
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Psychology, Developmental