Centering the inner experience of autism: development of the self-assessment of autistic traits

Allison Ratto, Julia Bascom, Sharon daVanport, John F. Strang, Laura G. Anthony, Alyssa Verbalis, Cara Pugliese, Nicole Nadwodny, Lydia Brown, Mallory Cruz, Becca Lory Hector, Steven Kenneth Kapp, Morénike Giwa Onaiwu, Dora M. Raymaker, John Elder Robison, Catriona Stewart, Ren Stone, Emma Whetsell, Kevin Pelphrey, Lauren Kenworthy

Research output: Contribution to journalArticlepeer-review

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Abstract

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect: the historical focus of autism research on White, (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of non-autistic clinicians and scientists. The measure was developed under leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT).It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.
Original languageEnglish
Pages (from-to)93-105
Number of pages13
JournalAutism in Adulthood
Volume5
Issue number1
Early online date1 Nov 2022
DOIs
Publication statusPublished - 13 Mar 2023

Keywords

  • autistic traits
  • autistic phenotype
  • Community-Based Participatory Research
  • CBPR
  • self-report
  • autism
  • adults
  • qualitative research

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