Should adults who suspect they may be autistic seek a diagnosis?
4/30/2024
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.
Is Cognitive Behavioral Therapy Appropriate for Autistic Individuals?
11/27/2023
The concept that a person can be both autistic and struggle with mental health disorders is relatively new in the social sciences. This is due in part to the practice of housing autistic people in institutions and denying them the right to be full members of society, and in part due to the recognition of only the most impacted individuals as being autistic until more recent versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM). After the deinstitutionalization movement, which started in the 1960s, and the evolution in understanding of what it means to be autistic, it became clear that not only do autistic people struggle with mental health conditions, they do so at a much higher rate than the general population. For example, a recent meta study found that 70% of autistic individuals qualify for at least one mental health diagnosis and 50% qualify for two or more. Research also shows that untreated anxiety in autistic individuals leads to long-term, negative outcomes
Because the concept that autistic individuals can struggle with their mental health is relatively new, there are no fully evidenced-based interventions for treating mental health diagnoses in autistic individuals. This has led to debates within the autistic and mental health communities due to the lack of clarity regarding what treatment modalities are effective and should be utilized in treatment. The use of cognitive behavioral therapy (CBT) for neurodivergent individuals, or those who are developing outside of what is considered to be the norm, has been questioned by advocates and mental health professionals in regards to its efficacy. An example of this is a popular book written by an autistic clinical psychologist, that states twice that CBT may not be as effective for autistic people as it is for neurotypical people and cites two articles to make this case. Due to the author being both a professional and autistic, these statements about CBT are very powerful. However, by only using two articles, these statements do not fully account for what current research has found regarding the use of CBT with autistic individuals.
So, what does the research say? After reviewing more than two dozen articles on the topic and writing a 26-page paper on the topic of using CBT to treat autistic children with co-occurring anxiety disorders, I found that CBT has been identified as a promising intervention for treating autistic individuals with co-occurring anxiety disorders, but had not had enough time or research to be designated it as being “evidence-based.” The research shows that interventions should include modifications that meet the specific needs of the autistic client population in order to increase the benefits of this modality. While research reflects that modifications are needed, there is no specific data regarding what modifications should be prioritized, and there are few curricula available that have been created specifically for autistic children or adults. There are many additional gaps in the literature, and as a scholar practitioner, I commit to continuing my research in order to provide the best possible mental healthcare for the individuals that I serve.
References
Driscoll, K., Schonberg, M., Stark, M. F., Carter, A. S., & Hirshfeld-Becker, D. (2020). Family-centered cognitive behavioral therapy for anxiety in very young children with autism spectrum disorder. Journal of Autism & Developmental Disorders, 50(11), 3905–3920. https://doi-org.ezproxy.simmons.edu/10.1007/s10803-020-04446-y
Fuselier, M.N., Guzick, A.G., Bakhshaie, J., Wood, J. J., Kendall, P. C., Kerns, C. M., Small, B. J., Goodman, W. K., Storch, E. A., (2023). Examining the relationship between anxiety severity and autism-related challenges during cognitive behavioral therapy for children with autism. Journal of Autism & Developmental Disorders. https://doi-org.ezproxy.simmons.edu/10.1007/s10803-023-05912-z
Guzick, A. G., Schneider, S. C., Kendall, P. C., Wood, J. J., Kerns, C. M., Small, B. J., Park, Y. E., Cepeda, S. L., & Storch, E. A. (2022). Change during cognitive and exposure phases of cognitive–behavioral therapy for autistic youth with anxiety disorders. Journal of Consulting and Clinical Psychology, 90(9), 709–714. https://doi-org.ezproxy.simmons.edu/10.1037/ccp0000755
Hollocks, M. J., Wood, J. J., Storch, E. A., Cho, A., Kerns, C. M., & Kendall, P. C., (2022) Reward sensitivity predicts the response to cognitive behavioral therapy for children with autism and anxiety, Journal of Clinical Child & Adolescent Psychology. DOI: 10.1080/15374416.2022.2025596
Jones, K., Chapman, A., Edwards, P., & Cook, M. (2022). Evaluation of an adapted form of CBT for young people with a diagnosis of autism spectrum disorder (ASD) and anxiety. Clinical Psychology Forum, 359, 29–34. https://doi-org.ezproxy.simmons.edu/10.53841/bpscpf.2022.1.359.29
Lai, MC, Kassee, C, Besney, R, Bonato, S, Hull, L, Mandy, W, Szatmari, P, & Ameis, SH (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. Lancet Psychiatry.
McBride, N. M., Weinzimmer, S. A., La Buissonnière-Ariza, V., Schneider, S. C., Ehrenreich May, J., Lewin, A. B., McGuire, J. F., Goodman, W. K., Wood, J. J., & Storch, E. A. (2020). The impact of comorbidity on cognitive-behavioral therapy response in youth with anxiety and autism spectrum disorder. Child Psychiatry & Human Development, 51(4), 625–635. https://doi-org.ezproxy.simmons.edu/10.1007/s10578-020-00961-2
Perihan, C., Burke, M., Bowman-Perrott, L., Bicer, A., Gallup, J., Thompson, J., & Sallese, M. (2020). Effects of cognitive behavioral therapy for reducing anxiety in children with high functioning ASD: A systematic review and meta-analysis. Journal of Autism & Developmental Disorders, 50(6), 1958–1972. https://doi-org.ezproxy.simmons.edu/10.1007/s10803-019-03949-7
Pickard, K., Blakeley-Smith, A., Boles, R., Duncan, A., Keefer, A., O, K. S., & Reaven, J. (2020). Examining the sustained use of a cognitive behavioral therapy program for youth with autism spectrum disorder and co-occurring anxiety. Research in Autism Spectrum Disorders, 73. https://doi-org.ezproxy.simmons.edu/10.1016/j.rasd.2020.101532
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Wood J.J., Kendall P. C., Wood K. S., Kerns, K. M., Seltzer, M., Small, B. J., Lewin, A. B., Storch, E. A., (2020). Cognitive behavioral treatments for anxiety in children with autism spectrum disorder: A randomized clinical trial. JAMA Psychiatry, 77(5):474–483. doi:10.1001/jamapsychiatry.2019.4160