Capturing the Autistic Experience: Self-Advocates Develop Self-Assessment Tools to Inform Autism Diagnosis and Validate Neuroimaging Findings across the Gender Spectrum

Background: Current gold standard tools for identifying and studying autism have been critiqued for their lack of specificity and sensitivity, especially in older, higher IQ, and non-male individuals (e.g. Lai et al, 2015). For example, evidence from an epidemiological study indicates that females are diagnosed later than males, and females without intellectual disability (ID) are diagnosed significantly later than both females with ID and males without ID (Shattuck et al., 2009).Information from autistic people about their own experience of autism represents an undertapped resource for enhancing diagnostic and phenotyping tools. To fully capture the inner experience of autism, however, autistic people need to define the questions asked, as well as the answers given.

Objectives: Leverage a collaborative team of autistic self-advocates, clinicians and researchers to develop: an ADOS-2, Module 4 participant feedback questionnaire; a self-report autism trait questionnaire and a self-report questionnaire to validate neuroimaging findings with the inner experience of the imaging participants themselves.

Methods: As part of a multi-site NIMH Autism Center of Excellence Network study of gender in autism, and using participatory research techniques, autistic self-advocates have partnered with autism researchers and clinicians to develop and collect self-report measures on a suite of autism evaluation tools for diagnostic and research purposes. These are:

• A participant feedback questionnaire to capture the inner experience of people receiving the ADOS-2, Module 4, in order to inform its findings. Feedback will also be collected after the research appointment about the experience of participants in the study overall.
• A self-report autism trait questionnaire constructed with items identified by an iterative process consisting of: conducting an environmental scan of internet postings of autistic peoples’ descriptions of their autism; condensing those descriptions into an item list; and revising the item list through a modified Delphi procedure conducted with a diverse panel of autistic experts (e.g. speaking and non-speaking, full gender spectrum).
• A self-report questionnaire to validate and inform resting-state neuroimaging findings from the Autism Center of Excellence network study with the self-concept of the imaging participants themselves.

Results: The development of the ADOS feedback questionnaire has identified important issues such as the level of effort expended to participate in the ADOS interview and whether any of the participants’ comments had been previously rehearsed or practiced. The self-report autism trait questionnaire, based on a review of the on-line self-advocacy literature, addresses aspects of the autistic experience that are not captured with current assessment tools, such as “autistic inertia”, pleasure in word play/scripting, and variability in skills/abilities related to overwhelm and burnout. The neuroimaging validation questionnaire includes 20 items developed through iterative discussion between self-advocates and neuroimagers regarding the functional correlates of previously collected resting-state findings. It translates specific brain functions into plain English (items include: “I find it is easy to pick the right word when I talk.”; “Watching things move interests me.”).

Conclusions: Participatory research techniques with autistic partners as co-investigators leading researchers and clinicians in the development of new assessment tools yields measures which introduce previously unrecognized aspects of the autistic experience.