No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.At Autism, Brenna B. Maddox and colleagues have an article titled "“I wouldn’t know where to start”: Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults."
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.From the article:
At the systems level, a major barrier is the disconnect between the developmental disabilities and the mental health systems. All three stakeholder groups described the problems that occur because the developmental disabilities and mental health systems have very little integration. These problems begin as early as when an autistic adult decides to seek help for a mental health problem, but is turned away due to his or her autism diagnosis and is instead referred to the developmental disabilities system. Although developmental disabilities services may be helpful for a range of concerns, they typically do not focus on mental health conditions. Thus, when an autistic adult contacts a developmental disabilities clinic and expresses a desire for mental health treatment, he or she may be referred back to the mental health division. This phenomenon of autistic adults being “punted” between the developmental disabilities and mental health systems in the United States has been described in previous work (Maddox & Gaus, 2019), and parents of young adults on the spectrum find the task of navigating different service systems intimidating and time-consuming (Anderson and Butt, 2018).
- 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. doi:10.1007/s10803-018-3673-z
- 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. doi:10.1089/aut.2018.0006