News and Knowledge

“I don’t know where to turn for help.” I have heard this exact sentence from countless autistic individuals and their family members across the country, and it breaks my heart every time. Many autistic children, adolescents, and adults have mental health concerns, such as anxiety or depression. Unfortunately, finding appropriate supports or resources is often challenging, leading to frustration and discouragement. I have heard distressing stories from autistic individuals and their families about struggling to find a mental health professional who has training in autism. A mismatch between an autistic person and the mental health professional can lead to the professional causing unintentional harm through miscommunication, misunderstanding, or other problems.

We have a long way to go in the mental health field to address these issues, but meanwhile, autistic individuals need helpful mental health supports now. If you are looking for professional help, I offer the following tips and resources:

1. Join autism-related support and advocacy networks and look for word-of-mouth referrals from other autistic individuals or family members who have had success with local mental health professionals. Check out these resources to locate therapists and support groups:
   • Autistic Self Advocacy Network (ASAN). See if there is an affiliate group of ASAN in your geographical area.
   • Asperger/Autism Network (AANE). AANE maintains a directory of clinicians who specialize in the diagnosis of autism spectrum disorder; many of these clinicians may also provide mental health therapy for co-occurring mental health conditions or be able to refer you to another clinician for mental health therapy.
   • Autism Society. The Autism Society maintains referral listings through the Autism Source Resource Database, and you can narrow the search to mental health professionals. It also has a National Helpline that offers trained information and referral specialists to help navigate resources, services, and supports across the country.
   • Global and Regional Asperger Syndrome Partnership (GRASP). GRASP offers referral services, support groups, and online community groups.

2. Search for a therapist. If you are interested in starting individual or group therapy with a mental health therapist, search for therapists who have the core skills needed to treat the presenting problem at hand, even if they are not experts in autism. For example, if you have impairing anxiety and want your therapist to focus on anxiety improvement, you could use “anxiety” as a keyword in your search and select therapists with corresponding expertise to start narrowing the options. You can then call the therapist’s office to learn more about the therapist’s experience working with autistic individuals. When talking with the therapist or office staff, it is important to emphasize that autism is not the reason for seeking treatment (which most generally trained mental health therapists feel is outside their area of expertise). Explain that you are calling for mental health services for co-occurring anxiety, depression, post-traumatic stress disorder, or whichever mental health condition is of primary concern to you.

3. Help your therapist understand autism. If you find a positively reviewed mental health therapist with expertise in your mental health condition, but not in autism, ask them if they are open to learning more about autism and how it is part of you (or your family member). If they are open to learning more, it’s a good sign that they are willing to tailor their therapeutic approaches for autistic individuals.
   • Two good books about autism and mental health that you can suggest to them are Aspies on Mental Health: Speaking for Ourselves, edited by Luke Beardon and Dean Worton and Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder: Second Edition, by Dr. Valerie Gaus.
   • Some therapists may even be interested in attending a training or participating in a learning collaborative to improve their understanding of autism (ECHO Autism, for example, has a virtual learning network)
   • You can also share one or more of the following toolkits to highlight important points about working effectively with autistic individuals:
     • Crisis Supports for the Autism Community
     • Supporting Autistic Children and Young People through Crisis
     • Autism Resource for Warning Signs of Suicide: Considerations for the Autism Community
     • Supporting Individuals with Autism through Uncertain Times

In summary, there is a significant shortage of mental health professionals who specialize in autism, and oftentimes autistic individuals and their families spend a great deal of time and energy advocating for appropriate and beneficial mental health services. There is much work left to be done to address these disparities in mental healthcare. In the meantime, I hope that the above recommendations are helpful for you. Prioritizing your mental health shouldn’t wait.

Note: Some of these recommendations were informed by my collaboration with Dr. Valerie Gaus: Maddox, B. B., & Gaus, V. L. (2018). Community mental health services for autistic adults: Good news and bad news. Autism in Adulthood, 1, 13-17. doi:10.1089/aut.2018.0006

Dr. Brenna Maddox is an assistant professor in the Department of Psychiatry at the University of North Carolina-Chapel Hill. As the implementation scientist for the TEACCH Autism Program, her work focuses on improving community services for autistic people across the lifespan. She is particularly interested in training community mental health clinicians, modifying evidence-based mental health interventions for autistic people with anxiety or depression, and preventing suicide in this population. Dr. Maddox is also a clinical psychologist, a deputy editor for the journal Autism in Adulthood, and a co-chair of the American Association of Suicidology’s Autism and Suicide Committee.