Diagnosis as Experience: Why Diagnostic Revision is Needed
The DSM-V and the DSM-V-TR don't phrase autism diagnosis through symptoms, so much as outward signs. That is, symptoms can be understood as manifest through someone's experience, while signs are manifest through what is seen from the outside. While it is necessary for diagnosticians to look from the outside, the limited view as phrased in assessments is not suggestive at all of the autistic experience. There is a problem in that autistic individuals rarely "see themselves" through the description of signs, and I believe that many people--especially adults--would experience less ambiguity and be better able to self-diagnose if there were a criteria that showed ASD through symptoms, not just signs.
This shouldn’t be so medical
Much like other populations that are marginalized, I believe that autistics would benefit by being able to describe themselves, rather than medical descriptions that are written from the point of view of the general population; there is a lack of information about autism written by autistics (Umagami, Remington, Lloyd-Evans, Davies, & Crane, 2022). While ASD can be accompanied by learning disabilities, the truth is that ASD itself mainly disables a person only through societal constructs. There is nothing inherently "wrong" with an autistic person; however, our bottom-up thinking style and lack of expected socialization leads to disabilities in daily life. For example autistic people have a much harder time attaining and retaining employment (Coleman & Adams, 2018), with some estimates stating that up to 85% of autistic people with a college degree are unemployed (Ohl, Grice Sheff, Small, Nguyen, Paskor, & Zanjirian, 2017).
Would ASD assessments be more effective with criteria written by autistic individuals describing the experience of being autistic?
One of the biggest problems that autistics face is the neurotypical-centered worldview that the autistic way of thinking and communicating is deficient and that the autistic must adapt to neurotypical norms; simply put this is not possible in the longterm. Our point of view is not only valid, but advantageous in offering diverse perspectives. While we can mask to fit neurotypical social styles to a point, the cognitive effort that it takes for an ASD person to mimic the communication style that is instinctive to neurotypical is not sustainable and no amount of education or support is going to make a lasting change to this condition. Instead, a conceptual understanding of autism must include the autistic experience so that neurotypical people can adapt their own thinking to understand the intent and impact of autistic communication in order to better integrate autistics into the system of power. I believe that this change can and should start with the diagnostic criteria.
Coleman, D. M., & Adams, J. B. (2018). Survey of vocational experiences of adults with Autism Spectrum Disorders, and recommendations on improving their employment. Journal of Vocational Rehabilitation, 49(1), 67–78. https://doi-org.ezproxy.snhu.edu/10.3233/JVR-180955
Ohl A, Grice Sheff M, Small S, Nguyen J, Paskor K, Zanjirian A. (2017). Predictors of employment status among adults with Autism Spectrum Disorder. Work. 2017;56(2):345-355. doi: 10.3233/WOR-172492. PMID: 28211841.
Umagami, K., Remington, A., Lloyd-Evans, B., Davies, J., & Crane, L. (2022). Loneliness in Autistic Adults: A Systematic Review. Autism: The International Journal of Research and Practice, 26(8), 2117–2135. https://doi-org.ezproxy.snhu.edu/10.1177/13623613221077721
