Several factors have led to a general improvement in the outcomes of children and adolescents as they become adults. Both earlier diagnosis and better treatments play important roles in this improved outcome, although it must also be noted that a minority of individuals remain significantly intellectually disabled and in need of care (Howlin and Magiati 2017). More and more young adults are pursuing job training or college (White, Brewe1, et al. 2023). However, available data suggest that adults with ASD are underemployed and, when employed, are often underemployed, i.e., earning less than would be expected given their educational attainment/training (Solomon 2020).
As the title of this article implies, the challenges facing those of us who work with or who are adults with ASD come both from the research and service provision side (the latter ideally being informed by good research (Volkmar, Reichow, et al. 2024). Although adults with ASD have been with us for decades, autism research that focuses specifically on adults is rather limited. A recent paper on federal funding (Heinrich, Colomer, et al., 2023) reminds us that very little federal support is available. If one looks at the other side of the equation, i.e., the research that stems from funding, the picture is equally dismal. For example, for many years, I was able to tell my students to read the article by Piven and Rabns (2011), and they would have essentially mastered the field of work on autism and aging – i.e., it was basically limited to this one article. Fortunately, this is beginning to change e.g. (Roestorf, Bowler et al. 2019), and now there are nearly 2000 titles in an online search for articles with the words “adults and autism” or “ASD” in the title!
There are a few exceptions to be noted, e.g., psychopharmacology (Thom, Thom, et al. 2024), where adult populations are easier to engage in the research enterprise. More work is being done on supporting students with ASD in college (White, Brewe1, et al., 2023). Also, there are some important new or recently adapted areas of work, for example, the work on social skills training in adults (Laugerson, Ruth, et al. 2024) and new work on adapting cognitive behavior therapy for the anxiety and depression so common in adults with ASD (S.W., Golt, et al. 2024).
From a personal perspective, having recently retired after 40 years of very active clinical practice, I’ve seen several generations of young children with ASD grow up and sometimes do very well. This has been gratifying, but as I hear from these young adults and their parents, the lack of effective services and knowledge about such services and ASD itself is frustrating. Having retired from active clinical work at Yale, I am now heading the autism center at Southern Connecticut State University, where we have been actively engaged in a wide range of efforts to spread knowledge not only to teachers but to parents, college students, and adults. We’ve engaged in first responder training as well as offering drivers with autism the ability to experience a ‘practice’ police traffic stop (Grindle, Sassu, et al. 2024) using the new Connecticut blue envelope program. We are addressing the needs of students at our own University and doing outreach to community colleges and high schools.
In an effort to address these needs, my colleagues and I have designed a virtual, synchronous workshop series this fall and winter on topics related to the needs of adults with ASD – these include talks on medical and mental health issues, social skills support, dating, romantic relationships, and recreational skills supports as well as behavioral and legal issues as well as the with use of technology support and vocational issues and lastly dealing with environmental sensitivities. This series of talks is designed for practitioners, parents, and adults with ASD. Many of these speakers have contributed to a recent book edited by me and several colleagues on the topic of adults with ASD (Volkmar, Reichow et al. 2024).
On the one hand, it has been a source of tremendous gratification to see the improving outcomes for many individuals with ASD, who are now much more fully included in our communities and daily lives. On the other hand, it’s also frustrating that so little of what we know has been accurately transmitted. Hopefully, this series of talks and the growing attention paid to the needs of adults will begin to address this important topic. We will be holding a workshop in April 2025 on Adults with Autism. Check our website for updates later this year: SouthernCT.edu/OWLL. We hope you will join us!
Fred R. Volkmar, MD, is the Dorothy B. Goodwin Family Chair in Special Education at Southern Connecticut State University in New Haven, CT, and the Irving B. Harris Professor Emeritus at Yale University in New Haven, CT. For more information, email Volkmarf1@southernct.edu, call (203) 392-5929, or visit southernct.edu/asd-center.
References
Grindle, H., K. A. Sassu, J. M. Dooley, E. B. Farmer and F. R. Volkmar (2024). “Facilitating Interaction with Police During Routine Traffic Stops for Persons with ASD.” Journal of Autism & Developmental Disorders.
Heinrich, C. J., A. Colomer and M. Hieronimus (2023). “Minding the gap: Evidence, implementation and funding gaps in mental health services delivery for school-aged children.” Child Youth Serv Rev.
Howlin, P. and I. Magiati (2017). “Autism spectrum disorder: outcomes in adulthood.” Current Opinion in Psychiatry 30(2): 69-76.
Laugerson, E., E. Ruth and J. A. Estabillo (2024). “Social Skills Training for Autistic Adolescents and Adults.” Adolescents and Adults with Autism, edited by F. R. Volkmar, B. Reichow and J. McPartland. New York, NY, Springer 75-102.
Piven, J. and P. Rabins (2011). “Autism spectrum disorders in older adults: Toward defining a research agenda.” Journal of the American Geriatrics Society 59(11): 2151-2155.
Roestorf, A., D. M. Bowler, M. K. Deserno, P. Howlin, L. Klinger, H. McConachie, J. R. Parr, P. Powell, B. F. C. Van Heijst and H. M. Geurts (2019). “Older Adults with ASD: The Consequences of Aging.” Insights from a series of special interest group meetings held at the International Society for Autism Research 2016-2017.” Research in Autism Spectrum Disorders 63: 3-12.
S.W., W., J. Golt, F. Musich and D. Spain (2024). “Psychotherapeutic Approaches for Autistic Adolescents and Adults.” Adolescents and Adults with Autism Spectrum Disorders. New York, NY, Springer Publishing 405-438.
Solomon, C. (2020). “Autism and Employment: Implications for Employers and Adults with ASD.” Journal of Autism & Developmental Disorders. 15(11): 15.
Thom, R. K., R. P. Thom and C. J. McDougle (2024). “Pharmacotherapy of Behavioral Symptoms and Psychiatric Comorbidities in Adolescents and Adults with Autism Spectrum Disorders.” Adolescents and Adults with Autism Spectrum Disorders. F. Volkmar, B. Reichow and J. McPartland. New York, NY, Springer Publishing 207-248.
Volkmar, F., B. Reichow and J. McPartland (2024). Adolescents and Adults with Autism. New York, Springer.
White, S., A. M. Brewe1, N. Powell1 and A. B. McClain (2023). “Supporting Autistic Students in College.” Adolescents and Adults with Autism. F. R. Volkmar, B. Reichow and J. McPartland. New York, Springer In Press.
