Expert Q&A: Dr. Vanessa Bal discusses gaps in mental health care for autistic adults

Mental health is the defining public health crisis of our time, according to U.S. surgeon general Dr. Vivek Murthy. Recent research shows that approximately 70% of people with autism spectrum disorder (ASD) have at least one, if not multiple, co-occurring mental health conditions.  Services to address this overwhelming concern are still lacking and those that are available can be hard to access.

In this Q&A, Dr. Vanessa Bal discusses the biggest gaps in the care available for autistic adults with co-occurring mental health conditions, and shares potential directions for future research.

Dr. Vanessa Bal is the Karmazin & Lillard chair in adult autism and an associate professor at the Graduate School of Applied & Professional Psychology at Rutgers University. She is a licensed clinical psychologist and director of the Rutgers Center for Adult Autism Services Psychological Services Clinic. She currently sits on the Autism Speaks Early Career Investigators Advisory Subcommittee. Dr. Bal’s research focuses on advancing the understanding of autism in adulthood.

How does age of ASD diagnosis affect mental health outcomes?

Cross-sectional research shows that adults diagnosed later in life have higher rates of co-occurring mental health conditions, though it’s hard to know whether these are true co-occurrences or inaccurate diagnoses that they received before they got their ASD diagnosis. Child data suggests similar patterns, where children diagnosed later in childhood tend to have more co-occurring diagnoses.

From talking to lots of adults diagnosed in adulthood, there’s good reason to believe that co-occurring anxiety and depression in particular could be a result of spending many decades of life feeling stigmatized and not understanding the difficulties that they had in certain areas. The uncertainty of not having an autism diagnosis as a way to understand their experience could contribute to higher rates of these conditions.

The flip side of that is it’s possible that getting an autism diagnosis in childhood could result in diagnostic overshadowing where everything is put into the context of autism, meaning that those diagnosed with ASD as children may be less likely to also be diagnosed with co-occurring conditions because it is assumed that the specific behaviors or difficulties are related to their autism (when really it is anxiety, depression etc).

Why do you think that the rates of psychiatric issues are so high?

There are so many factors that go into the high rates of co-occurring mental health conditions. Autistic people are navigating a world that generally does not understand autism. You can find pockets of people who are very supportive and accommodating, but in general, the world wasn’t designed for them. That can certainly contribute to the problem.

There are also biological factors that may play a role. If a person has a genetic predisposition for a difference in how their brain works or processes information, that could very well increase their risk for depression and anxiety alongside increasing their likelihood of autism.

Lastly, many autistic people try to access care through non-specialty settings. They go to general mental health professionals, and there are studies in the field that show many of those mental health professionals don’t feel equipped to support autistic people. Often, if a person has an autism diagnosis, they get turned down because the provider claims they don’t have knowledge or capacity in that area. Even if they get treated, they can end up in patterns where their depression or anxiety isn’t getting better because the provider doesn’t understand all of the factors that may be affecting that person or isn’t sure how to best adapt their treatment protocols. So, the care they receive is not always as effective, and/or people are sitting on very long waitlists to access specialty care.

What could we do on a systems level to better support autistic adults?

To improve mental health outcomes for autistic adults, we need to continue on the path of improving access to autism diagnosis, awareness, understanding and appreciation for strengths, difficulties and differences across the ability range.

There’s a lot to be said for increasing true understanding of autism and encouraging organizations to embrace universal design principles. Instead of focusing on the challenges that autistic people might face in a certain environment, the goal should be to make the environment more inclusive across the board.

We’ve made huge strides in early diagnosis, but we also need to do a much better job of training our general practitioners in the mental health field to be prepared to see autistic adults. Typically, adult psychiatrists, adult psychologists and adult social workers don’t receive training in autism; if covered at all, autism is often embedded in pediatric or child/family tracks in training programs. If primary care physicians know anything about autism, it’s because they’re pediatricians or have sought out training.

So, I think we need to do better offering autism training across all the full field of psychology (and healthcare more broadly). Given the prevalence of ASD is at 2.8% for children in the U.S., autism should be as common in the training as depression and anxiety so that providers are aware of it and have some skills in making that diagnosis. We simply do not have the capacity as a specialty field to assess and diagnose all the people who need to be seen, and so we need to find other ways. Some people will continue to benefit from specialty care, but there ought to be a subset of people who can go and get a diagnosis from a more general mental health professional who has enough training to help them map out their path forward.

What are the biggest areas of need for future research in this area?

There are a number of research studies going on to try to adapt different mental health interventions for autistic people, and the hope would be that those would get disseminated to non-specialist providers. But I think it’s important to think about a tiered approach to mental health. It’s one thing to develop autism-appropriate interventions for people with clinically significant depression or anxiety, and it’s another to try to intervene beforehand. What are some things we can do to improve people’s mental health before they develop these conditions?

For example, we developed A Mental Health Guide for Autistic College Students that was designed to help incoming college students anticipate the things that might stress them out and prepare them to cope with those challenges before arriving in college. This guide allows students to take a more proactive approach to their mental health.We also really need to think more about mental health screening and monitoring in primary care and other settings that autistic adults might already be getting supports.  

Another gap that barely gets addressed is thinking about the mental health of people who are not as able to express their emotions, thoughts and feelings—particularly adults with autism who also have intellectual disability or are minimally verbal. It’s so important to understand the ways in which someone who has difficulty verbally expressing their feelings/experiences might display anxiety or depression. Parents know because they know their son or daughter really well, but untrained community providers don’t always know, and that can cause a lot of challenges.

Learn more:

• The Autism Speaks Autism Care Network works to improve mental health among autistic youth
• Autism Speaks CEO Keith Wargo addresses the crisis in access to autism care
• Watch Dr. Bal's presentation on mental health at the Autism Speaks Thought Leadership Summit on Autism and Aging: