Awareness, Education, and Counseling: Supporting mental health for adults with autism
by Anne Roux and Connor Kerns
March 30, 2016
Approximately 70% of the autistic population has at least one, if not multiple, co-occurring mental health issues. That figure comes from studies of children and adolescents, but we have no reason to believe that the prevalence of mental health conditions would decrease in adulthood. In fact, we’d expect that the numbers might be higher in adults, as social anxiety and depression often emerge during adolescence and are more common in adolescents with autism than in those with other types of disabilities. The symptoms of mental health conditions like anxiety, though, sometimes go unrecognized in people with autism, as the symptoms are sometimes falsely attributed to being part of what autism looks like.
When mental health issues go undiagnosed and unaddressed, their effects can accumulate across the life course. Mental health issues can impede follow-through on recommendations and can affect acquisition of life skills. Maybe a person neglects that recommendation to visit the disability supports office at college, or maybe she is too anxious to attempt to learn to drive. Trying to improve quality of life for people with autism who are dealing with untreated mental health issues is as difficult as trying to help a person lose weight if they’re depressed - unless you also address the depression.
Anxiety, in particular, is known to add to functional impairments in those with autism. Co-occurring anxiety increases self-injurious behaviors, suicidal ideation, poor social functioning, and family stress. But studies of children and adolescents suggest that when we treat anxiety, we may see improvement in symptoms of autism as a whole. This makes anxiety an appealing target for intervention. Let’s take our focus on anxiety a step further.
Anxiety can have a substantial impact on an individual’s day-to-day functioning. Fears of social rejection may lead to social isolation and may add to struggles with things like applying and interviewing for jobs, requesting help when needed or when in danger, making doctor appointments, expressing an opinion, advocating and defending oneself, and even ordering food from a restaurant. Phobias about the sound of toilets, dogs, or the sight of men with beards may prevent an individual from using a public restroom. When extreme, anxieties and phobias may prevent a person from leaving their home. Worries about the state of the world, the daily schedule, one’s performance, the safety of others, the uncertain future and other generalized concerns can disrupt sleep and cause headaches, muscle tension, stomach upset, distraction and paralyzing indecision.
In addition to these functional concerns, anxiety and other mental health concerns, like depression, add suffering, self-doubt and self-degradation to the challenges already faced by individuals on the autism spectrum. Anxiety and depression spur feelings of inadequacy, incompetence and hopelessness that limit coping and discourage the learning of new skills and the pursuit of new experiences. Anxiety tells individuals to fear mistakes, change, and moving forward, though all are essential elements of development. Anxiety interferes with the attainment of perseverance and mastery, and the ability to actively live rather than simply survive one’s life.
Fortunately, in addition to pharmacological treatment, we have evidence suggesting that cognitive behavior therapy (CBT) reduces co-occurring anxiety in children and adolescents with autism. There is no reason to suspect CBT doesn’t also have similar effects in adults. The problem is that most of the people who deliver services for adults with autism - including the many family members who are the primary daily support providers for adults - are not trained in CBT.
It’s a circular problem. Few people realize there are answers for improving life for those with anxiety and autism, because few people recognize that anxiety exists separately from autism. So, what steps could we take to support mental health for adults with autism?
We think the answer is three-pronged. Transition-age youth and young adults with autism need to have access to awareness, education, and counseling about identification and management of co-occurring mental health conditions to ease the transition into adulthood and functioning as an adult. Service providers, educators, and family and friends who interact frequently with youth and adults with autism should be able to recognize co-occurring mental health issues, know when to refer to a psychologist for intensive treatment, and know steps for immediate interventions (e.g., coping strategies). Trained counselors should be available who understand autism, co-occurring mental health issues, and successful treatment/coping strategies for this population.
It is unlikely that we will ever have enough specialized psychiatric providers to meet the needs of so many adults with autism. But there are concrete steps that could be taken to increase the capacity of people in the community to at least provide mental health first aid. Here are a few:
- Increase awareness of adolescents and adults with autism and their family members about anxiety, depression, and other emotional struggles, and increase their comfort in communicating these concerns to others without stigma.
- Teach adults with autism how to tell if anxiety and depression are occurring, and how to tell when they’ve become problematic in and of themselves versus when they may be reactions to a situation.
- For people with higher levels of impairment, educate families and providers about what anxiety/depression look like in more affected individuals.
- Train service providers and educators in how to recognize co-occurring mental health symptoms, when to refer to a psychologist, and what to do for immediate, first level interventions.
- Counsel adolescents during transition to teach self-awareness of mental health issues and improve coping strategies, beginning with reducing stigma around sharing with others that you feel anxious and depressed.
- Encourage youth and adults to pursue help. Therapy can be focused on dealing with anxiety, but can also focus on helping the individual better understand themselves, their goals, and their personal development.
- Help youth and young adults to determine when and how to disclose information about mental health issues to others.
- Learn from adults on the spectrum about supports and strategies they find useful. Peer-to-peer support models are a key ingredient for managing anxiety for some people and have proven to be effective in dealing with severe mental illness. What else can we learn and adapt from those who have experience coping with anxiety and autism?
Finding comprehensive solutions for addressing the needs of those with the highest level of mental health needs will undoubtedly continue to be a tough problem to solve. But as the population of adults with autism continues to increase, recognizing co-occurring mental health issues and developing capacity to address them within our current resources, is an important first step.
Anne Roux, MPH, MA is a nationally renowned autism researcher, author and family advocate. She leads the production of our National Autism Indicators Report series and other publications.
Connor Kerns, PhD, is an Assistant Research Professor of psychology at the A.J. Drexel Autism Institute. Her present research focuses on the overlap, assessment and treatment of anxiety and autism spectrum disorders.