By Briana Brukilacchio, PhD, MEd
In recent years it has become increasingly common for adults who do not carry an official autism diagnosis to self-identify as neurodivergent. This article summarizes several barriers associated with autism evaluations for the adult population and provides context for potential limitations and benefits of self-identifying as neurodivergent without a formal diagnosis.
Several structural and interpersonal factors complicate the path towards an autism evaluation in adulthood. Structural factors include the high cost of autism evaluations (particularly in the United States), very lengthy wait times, and limited availability of qualified clinicians. Survey respondents in one study expressed a concern that healthcare providers may hold stereotypical views of autism or have little understanding of how autism presents differently in adulthood and in individuals who have become highly accomplished at masking. Regarding the evaluation itself, many individuals had difficulty verbalizing specific concerns and explaining why they identified with autism. Others reported that it was difficult to detect the “real meaning” of questions asked in an interview or through rating scales, suggesting that social communication challenges may have impacted their ability to fully participate in the evaluation. Some adults also shared concerns about misdiagnosis, explaining that being diagnosed with a different mental health condition could feel invalidating and unhelpful.
Some individuals find that without a formal autism diagnosis, certain supports are inaccessible to them. For example, formal accommodations provided through universities and employers typically do require documentation of an official diagnosis. Additionally, there can be significant overlap between autism and related conditions such as attention-deficit/hyperactivity disorder, social anxiety disorder, and obsessive-compulsive disorder. Therefore, individuals who do not receive a formal evaluation may be missing information that would help them to better understand their experiences and develop a comprehensive therapeutic plan. Undiagnosed adults who identify as neurodivergent and are having trouble navigating postsecondary education, personal relationships, employment goals, or workplace dynamics are encouraged to explore the wide variety of adult programs offered through Aspire.
Nonetheless, undiagnosed adults do sometimes forgo a formal evaluation process because they find sufficient benefit self-identifying as neurodivergent. For example, self-identifying as neurodivergent can still provide some individuals with an increased sense of self-understanding, access to helpful information, and direct them toward new and more satisfying social opportunities. Self-identification can also be experienced as a cathartic resolution for those who have felt different from neurotypical peers since childhood or adolescence but lacked a framework for understanding and navigating those differences.
- Lewis, L. F. (2016). Exploring the experience of self-diagnosis of autism spectrum disorder in adults. Archives of psychiatric nursing, 30(5), 575-580.
- Lewis, L. F. (2017). A mixed methods study of barriers to formal diagnosis of autism spectrum disorder in adults. Journal of autism and developmental disorders, 47, 2410-2424.
- Brosnan, M. (2020). An exploratory study of a dimensional assessment of the diagnostic criteria for autism. Journal of Autism and Developmental Disorders, 50, 4158-4164.
- Overton, G. L., Marsa-Sambola, F., Martin, R., & Cavenagh, P. (2023). Understanding the Self-identification of Autism in Adults: A Scoping Review. Review Journal of Autism and Developmental Disorders, 1-21.