Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits

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

doi:10.1089/aut.2021.0099

Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits

Autism Adulthood. 2023 Mar 1;5(1):93-105. doi: 10.1089/aut.2021.0099. Epub 2023 Mar 13.

Authors

Allison B Ratto¹, Julia Bascom², Sharon daVanport³, John F Strang⁴, Laura G Anthony⁵, Alyssa Verbalis¹, Cara Pugliese¹, Nicole Nadwodny⁶, Lydia X Z Brown⁷, Mallory Cruz⁸, Becca Lory Hector⁹, Steven K Kapp¹⁰, Morénike Giwa Onaiwu¹¹, Dora M Raymaker¹², John Elder Robison¹³, Catriona Stewart¹⁴, Ren Stone¹⁵, Emma Whetsell¹⁶, Kevin Pelphrey¹⁷, Lauren Kenworthy¹

Affiliations

¹ Center for Autism Spectrum Disorders, Division of Neuropsychology, Children's National Hospital, Washington, DC, USA.
² Autistic Self Advocacy Network, Washington, DC, USA.
³ Autistic Women & Nonbinary Network, Lincoln, NE, USA.
⁴ Gender and Autism Program, Children's National Hospital, Washington, DC, USA.
⁵ Department of Psychiatry, University of Colorado School of Medicine, Anschutz Medical Campus, Denver, CO, USA.
⁶ Department of Developmental Medicine, Boston Children's Hospital, Brookline, MA, USA.
⁷ Departments of Disability Studies and Women's and Gender Studies, Georgetown University, Washington, DC, USA.
⁸ Private Consultant, Hitachiomiya, Ibaraki, Japan.
⁹ DEIB and Disability Consultant, Evolving Skye, LLC, Levant, ME, USA.
¹⁰ Department of Psychology, University of Portsmouth, Portsmouth, UK.
¹¹ Center for the Study of Women, Gender, and Sexuality, Rice University, & Autistic Women & Nonbinary Network, Houston, TX, USA.
¹² School of Social Work, Portland State University, Portland, OR, USA.
¹³ Neurodiversity Working Group, The College of William and Mary, Williamsburg, VA, USA.
¹⁴ Private Consultant, Ashfield, Dunblane, Scotland.
¹⁵ Autistic Women & Nonbinary Network, Washington, DC, USA.
¹⁶ Private Consultant, Portland, OR, USA.
¹⁷ Department of Neurology, University of Virginia, Charlottesville, VA, USA.

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 following: 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 nonautistic clinicians and scientists. The measure was developed under the 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.

Keywords: CBPR; adults; autism; autistic phenotype; autistic traits; community-based participatory research; qualitative research; self-report.

Plain language summary

Why is this topic important?: Some people, especially older people, and those who can “mask” their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism.

What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people.

What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said.

How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement.

What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles.

How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.