Should adults seek out an autism diagnosis?
As the understanding of autism has evolved, it has become clear that there are many adults who have autism, but did not receive formal diagnoses as children. This is often more true for autistic women, girls, and gender diverse individuals due to the history of research on the subject, which utilized primarily male samples. Because of this, many of the tests designed to identify autism were normed for males, meaning that the tests are less sensitive to non-male presentations of autism. Additionally, there is evidence that women tend to internalize their autistic traits, which leads to others being unaware of, or missing the signs of autism.
So, should adults who suspect they may be autistic get a diagnosis? Based on the research, there are multiple reasons why receiving an autism diagnosis may be important. One reason is that it may be of benefit to the individual’s mental health (MH). Autistic individuals much have higher rates of MH diagnoses that the general population with as many as 70% of individuals qualifying for at least one MH diagnosis and 50% qualifying for two or more. Additionally, autistic individuals are at a higher risk of suicidality. Due to this increased risk, knowing that you have autism may help you and your doctors and mental health providers be on the lookout for some of these risk factors. It will also help them tailor medical and mental health interventions for your unique, neurodiverse needs. In addition, research shows that receiving a diagnosis of ASD has generally been shown to relieve some MH symptoms and lead to greater insight into self as well as greater self-acceptance. Not only that, but once a person has an official diagnosis, they may benefit from and be entitled to additional supports at work and school.
Despite the benefits, there are often barriers for adults receiving an autism diagnosis. Many medical and mental health professionals hold ableist views of autism that may lead them to encourage individuals not to seek a diagnosis due to beliefs that it will stigmatize them. They may also hold ableist beliefs that a person cannot possibly be autistic because they have a job, degree, family, etc. This is of course not true; Dr. Stephen M. Shore comes to mind as an example of an autistic adult who has all of these things. Unfortunately, there is still a prevalent attitude that ‘clinically significant impairment’ means that one cannot be successful in the eyes of society and also be autistic. Additionally, there are barriers related to cost and accessibility. Testing is very expensive and insurance often does not cover it. If a person can afford testing, finding a clinical psychologist who is familiar with what autism looks like in adults can be very difficult, especially if you live outside of urban centers.
So back to the question of whether or not adults who think they may be autistic should be tested. In a perfect world, the answer would be yes. This will help increase the person and their support system’s insight, will likely improve mental health, and will help inform needed supports for the individuals in multiple settings such as education, work, and the mental and physical health systems. Unfortunately, we do not live in a perfect world, which is why self-diagnosis is widely accepted as valid in the autism community. I encourage people to create a list of pros and cons and discuss this with their support system. Is seeking a diagnosis worth the cost and effort? That is a question only you can answer.
References
Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of Autism and Developmental Disorders, 48(2), 473.
Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). “People like me don’t get support”: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism: The International Journal of Research & Practice, 23(6), 1431–1441.
De Broize, M., Evans, K., Whitehouse, A. J. O., Wray, J., Eapen, V., & Urbanowicz, A. (2022). Exploring the Experience of Seeking an Autism Diagnosis as an Adult. Autism in Adulthood, 4(2), 130–140.
Huang, Y., Arnold, S. R., Foley, K.-R., & Trollor, J. N. (2020). Diagnosis of autism in adulthood: A scoping review. Autism: The International Journal of Research & Practice, 24(6), 1311–1327.
Jellett, R., & Muggleton, J. (2022). Implications of Applying “Clinically Significant Impairment” to Autism Assessment: Commentary on Six Problems Encountered in Clinical Practice. Journal of Autism and Developmental Disorders, 52(3), 1412. https://link-springer-com.ezproxy.simmons.edu/article/10.1007/s10803-021-04988-9
Lai, MC, Kassee, C, Besney, R, Bonato, S, Hull, L, Mandy, W, Szatmari, P, & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. Lancet Psychiatry.
Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). “I was exhausted trying to figure it out”: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism: The International Journal of Research & Practice, 24(1), 135–146.
Lewis, L. (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults. Journal of Autism & Developmental Disorders, 47(8), 2410–2424.
