Skip to main content
Intended for healthcare professionals
Skip to main content
Restricted access
Research article
First published online November 1, 2019

“I wouldn’t know where to start”: Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults

Abstract

Most autistic adults struggle with mental health problems, and traditional mental health services generally do not meet their needs. This study used qualitative methods to identify ways to improve community mental health services for autistic adults for treatment of their co-occurring psychiatric conditions. We conducted semistructured, open-ended interviews with 22 autistic adults with mental healthcare experience, 44 community mental health clinicians, and 11 community mental health agency leaders in the United States. The participants identified clinician-, client-, and systems-level barriers and facilitators to providing quality mental healthcare to autistic adults. Across all three stakeholder groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems, which can result in autistic adults being turned away from services when they contact the mental health division and disclose their autism diagnosis during the intake process. Further efforts are needed to train clinicians to work more effectively with autistic adults and to increase coordination between the mental health and developmental disabilities systems.

Lay Abstract

Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options.

Get full access to this article

View all access and purchase options for this article.

References

Anderson C., Butt C. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders, 48, 3912–3925.
Beidas R. S., Edmunds J. M., Marcus S. C., Kendall P. C. (2012). Training and consultation to promote implementation of an empirically supported treatment: A randomized trial. Psychiatric Services, 63, 660–665.
Bradley E. H., Curry L. A., Devers K. J. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Services Research, 42, 1758–1772.
Braun V., Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
Brookman-Frazee L. I., Drahota A., Stadnick N. (2012). Training community mental health therapists to deliver a package of evidence-based practice strategies for school-age children with autism spectrum disorders: A pilot study. Journal of Autism and Developmental Disorders, 42, 1651–1661.
Brookman-Frazee L. I., Drahota A., Stadnick N., Palinkas L. A. (2012). Therapist perspectives on community mental health services for children with autism spectrum disorders. Administration and Policy in Mental Health and Mental Health Services Research, 39, 365–373.
Buck T. R., Viskochil J., Farley M., Coon H., McMahon W. M., Morgan J., Bilder D. A. (2014). Psychiatric comorbidity and medication use in adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44, 3063–3071.
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, 23, 1431–1441.
Crane L., Adams F., Harper G., Welch J., Pellicano E. (2019). “Something needs to change”: Mental health experiences of young autistic adults in England. Autism, 23, 477–493.
Crane L., Davidson I., Prosser R., Pellicano E. (2019). Understanding psychiatrists’ knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: Online survey. BJPsych Open, 5, e33.
Croen L. A., Zerbo O., Qian Y., Massolo M. L., Rich S., Sidney S., Kripke C. (2015). The health status of adults on the autism spectrum. Autism, 19, 814–823.
Farley M. A., Cottle K. J., Bilder D., Viskochil J., Coon H., McMahon W. (2018). Mid-life social outcomes for a population-based sample of adults with ASD. Autism Research, 11, 142–152.
Farley M. A., McMahon W. M., Fombonne E., Jenson W. R., Miller J., Gardner M., . . . Coon H. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2, 109–118.
Gillberg I. C., Helles A., Billstedt E., Gillberg C. (2016). Boys with Asperger syndrome grow up: Psychiatric and neurodevelopmental disorders 20 years after initial diagnosis. Journal of Autism and Developmental Disorders, 46, 74–82.
Hofvander B., Delorme R., Chaste P., Nydén A., Wentz E., Ståhlberg O., . . . Leboyer M. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry, 9, Article 35.
Joshi G., Petty C., Wozniak J., Henin A., Fried R., Galdo M., . . . Biederman J. (2010). The heavy burden of psychiatric comorbidity in youth with autism spectrum disorders: A large comparative study of a psychiatrically referred population. Journal of Autism and Developmental Disorders, 40, 1361–1370.
Kerns C. M., Roux A. M., Connell J. E., Shattuck P. T. (2016). Adapting cognitive behavioral techniques to address anxiety and depression in cognitively able emerging adults on the autism spectrum. Cognitive and Behavioral Practice, 23, 329–340.
Lipinski S., Blanke E. S., Suenkel U., Dziobek I. (2019). Outpatient psychotherapy for adults with high-functioning autism spectrum condition: Utilization, treatment satisfaction, and preferred modifications. Journal of Autism and Developmental Disorders, 49, 1154–1168.
Maddox B. B., Gaus V. L. (2019). Community mental health services for autistic adults: Good news and bad news. Autism in Adulthood, 1, 13–17.
Mandell D. S., Walrath C. M., Manteuffel B., Sgro G., Pinto-Martin J. (2005). Characteristics of children with autistic spectrum disorders served in comprehensive community-based mental health settings. Journal of Autism and Developmental Disorders, 35, 313–321.
Nicolaidis C., Raymaker D. M., McDonald K. E., Baggs A. E. V., Dern S., Kapp S. K., . . . Ashkenazy E. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19, 824–831.
Proctor E. K., Landsverk J., Aarons G., Chambers D., Glisson C., Mittman B. (2009). Implementation research in mental health services: An emerging science with conceptual, methodological, and training challenges. Administration and Policy in Mental Health and Mental Health Services Research, 36, 24–34.
Raymaker D. M., McDonald K. E., Ashkenazy E., Gerrity M., Baggs A. M., Kripke C., . . . Nicolaidis C. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21, 972–984.
Rosenbaum S., Tolbert J., Sharac J., Shin P., Gunsalus R., Zur J. (2018, March). Community health centers: Growing importance in a changing health care system. Retrieved from https://www.kff.org/report-section/community-health-centers-growing-importance-in-a-changing-health-care-system-issue-brief/
Roux A. M., Rast J. E., Anderson K. A., Shattuck P. T. (2017). National autism indicators report: Developmental disability services and outcomes in adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
Roux A. M., Shattuck P. T., Rast J. E., Rava J. A., Anderson K. A. (2015). National autism indicators report: Transition into young adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.
Shattuck P. T., Narendorf S. C., Cooper B., Sterzing P. R., Wagner M., Taylor J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129, 1042–1049.
Shattuck P. T., Wagner M., Narendorf S., Sterzing P., Hensley M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics & Adolescent Medicine, 165, 141–146.
Spain D., Sin J., Chalder T., Murphy D., Happé F. (2015). Cognitive behaviour therapy for adults with autism spectrum disorders and psychiatric co-morbidity: A review. Research in Autism Spectrum Disorders, 9, 151–162.
Tint A., Weiss J. A. (2018). A qualitative study of the service experiences of women with autism spectrum disorder. Autism, 22, 928–937.
Tong A., Sainsbury P., Craig J. (2007). Consolidated Criteria for Reporting Qualitative Research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349–357.
White S. W., Conner C. M., Maddox B. B. (2017). Behavioral treatments for anxiety in adults with autism spectrum disorder. In Kerns C. M., Renno P., Storch E. A., Kendall P. C., Wood J. J. (Eds.), Anxiety in children and adolescents with autism spectrum disorder: Evidence-based assessment and treatment (pp. 171-192). London, England: Elsevier.
White S. W., Simmons G. L., Gotham K. O., Conner C. M., Smith I. C., Beck K. B., Mazefsky C. A. (2018). Psychosocial treatments targeting anxiety and depression in adolescents and adults on the autism spectrum: Review of the latest research and recommended future directions. Current Psychiatry Reports, 20, 82.
Wood J. J., McLeod B. D., Klebanoff S., Brookman-Frazee L. (2015). Toward the implementation of evidence-based interventions for youth with autism spectrum disorders in schools and community agencies. Behavior Therapy, 46, 83–95.
Zerbo O., Massolo M. L., Qian Y., Croen L. A. (2015). A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. Journal of Autism and Developmental Disorders, 45, 4002–4014.