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Mental Health in the Autism Community

Mental health disorders are conditions that affect our thinking, mood, and/or behavior to the extent that it interferes with our ability to function. These disorders include, but are not limited to, attention-deficit/hyperactivity disorder (ADHD), anxiety, depression, and bipolar disorder. For the general population in the United States, the CDC estimates 20% of adults (or one out of every five) are currently experiencing a mental illness.

For people with autism, the statistics are very different. According to a 2021 Drexel University study, an estimated 78% of children with autism also experience a mental illness. For adults, the rates have been estimated to be as high as 50-70% but untangling the true picture is difficult for a variety of reasons. This blog will detail possible reasons why mental health conditions occur more frequently for people with autism, why there continue to be barriers to diagnosing and treating mental health conditions for autistic individuals, what treatment barriers exist for autistic individuals, and details on how to make treatment more accessible to autistic clients.

Why do individuals with autism seem to experience mental health disorders at such a high rate? Research has identified several key potential reasons why.

First, autistic people (and neurodivergent individuals in general) can struggle to fit into or make sense of a world built largely by and for neurotypical people, which can lead to feelings of depression, anxiety, and isolation. For example, public spaces can be loud, busy, have bright lights and smells, and require any person who is sensitive to these environments to either build “coping skills” or avoid the experience. When we don’t shift to make these environments accessible in these needed ways, we continue to put the burden of coping on the shoulders of our neurodivergent citizens, which can be exhausting day-after-day. Continued stress and responsibility can absolutely contribute to changes in thinking, mood, and behavior, all of which can lead to developing a mental illness.

Second, within the mental health system, there can be significant delays and insurance barriers when trying to get a diagnosis and treatment. Individuals with autism often encounter waitlists for appropriately trained providers and often must travel longer distances to access these supports. Furthermore, diagnostic overshadowing, or incorrectly attributing new symptoms to a diagnosis already known, can be a common pitfall. Individuals with autism may have their experience of anxiety or depression explained away as features of autism rather than separate conditions that would benefit from identification and treatment.

Third, research has taught us two important things about mental illness and autism. People with autism are more likely to experience trauma, stigma, and discrimination than people who do not have autism, all of which take a tremendous toll on mental health. Research has also found biological factors or vulnerabilities that make some people (including those with autism) more susceptible to mental illnesses.

Lastly, if and when autistic individuals do get connected to mental health therapists or counselors, many of these helping professionals are simply not trained in autism. They may use the strategies they use for everyone else, which is often not the best fit for autistic clients. Mental health interventions like cognitive behavioral or “talk” therapy are only best practice in autism when they are autism-informed and include modifications.

 

The Importance of Accessibility

While all the above is true, we also know that when it’s accessible, mental health treatment can be very effective for individuals with autism. What does it mean for treatment to be accessible? And how can we adapt effective treatments to make them accessible for the autism community?

Accessible means easy to understand and use. One of the first steps to making mental health treatment more accessible for people with autism is to provide education about what mental illness looks like when it co-occurs with autism. It’s important to know that people with autism (both those with high and low support needs) can experience all the same mental illnesses as people who do not have autism. What gets tricky is that the characteristics of autism can sometimes change how the characteristics of mental illnesses look, which is one of the reasons why getting a diagnosis can be challenging (remember diagnostic overshadowing?). This is also why it’s so important for anyone providing a diagnosis or treatment to know as much about autism as possible so that they can adapt or adjust their efforts to help the process make sense for the autistic person.

 

Autism and Symptoms of Mental Illness

ADHD and autism occur together across the lifespan at about 39%. ADHD and autism share some similarities: both can impact attention, the ability to organize and sequence information, communication, and behavior. One of the main differences is the type of attention – for individuals with autism, we talk about focused attention and for individuals with ADHD, we think about attention that bounces from one subject to the next. Determining if symptoms are due to ADHD, autism, or both is the role of a skilled clinician, but as a silver lining, there are some clear treatments that are beneficial if you have either diagnosis or both. Behavioral treatment is the primary way to build self and emotion regulation strategies that can help when experiencing either diagnosis (or both). These types of strategies and coping skills can be taught in many supportive environments and can be a key focus of treatment during therapy.

Forty percent of individuals with autism also have an anxiety diagnosis and/or obsessive-compulsive disorder (OCD). When left untreated, anxiety symptoms can lead to the development of other mental disorders like depression, aggression, and self-injury. It can make transitioning through a typical day incredibly challenging and exhausting for the autistic individual and lead to a great deal of suffering. When anxiety occurs with autism, it can come in the form of specific phobias and fears, intrusive thoughts, social anxiety, and worry about events. And while there are a lot of medications on the market to treat anxiety (many of which are often prescribed to autistic individuals), there is not a lot of research done on these medications for those all along the autism spectrum – sometimes finding the right “fit” can take time. Like other mental illnesses, adapted cognitive behavioral therapy can be a tremendous support for an anxiety disorder. We’ll share some things to think of when adapting treatment later in this article.

Depression is the most common mental illness in the adult population. People with autism are four times as likely to have depression than people who do not have autism but it’s often a diagnosis that goes unrecognized and therefore untreated. Depression for individuals with autism can sometimes look like typical depression: low mood, disinterest in things that were once enjoyable, difficulty concentrating, and decreased self-care to name a few symptoms. But for people with autism, these symptoms might be hard for others to observe and challenging for autistic individuals to report. For folks with autism, it may also look like a limited number of friendships and connections, experience of rejection or bullying, strong preference to be alone or isolated from others, and rumination on past events. It also may come out through reports of tiredness, physical pain, irritability, or behavioral changes that other people notice. For depression (like anxiety), medication is often a method of treatment, but individual and group therapies can also be incredibly effective and beneficial provided they are adapted to meet the person with autism’s individual needs.

 

Adapting Treatment

One way that we can make treatment accessible to people with autism is to encourage therapists to be flexible in their approaches. Many therapists use cognitive behavioral interventions that include Cognitive Behavioral Therapy (or CBT for short) and Dialectical Behavioral Therapy (or DBT for short). Strategies from these interventions can be incredibly helpful to focus on what parts of life create suffering and how to begin to make changes. CBT tends to focus on the client-therapist relationship and can be almost entirely verbal; the treatment sessions often focus on reporting symptoms or recent events and discussing thoughts, feelings, and behaviors that resulted. For folks with autism, this entirely verbal set-up can be incredibly unsuccessful, exhausting, and challenging to do.

From the beginning, to make therapy as effective as possible for someone with autism, the therapist should get an understanding of the person, how they best learn and process information, and what their preferences are. Do they enjoy verbal discussion but need visuals to stay on track, like an agenda for the session? Do they benefit from someone drawing out what they’re discussing so they can review it and confirm if that’s what they’re trying to explain? Do they prefer worksheet-led discussions where they can put their thoughts on paper rather than discuss them entirely verbally? Do they benefit from an agenda ahead of time to know what to expect during the next session? Does telehealth work or do they do their best in person? Once therapists know these preferences and needs, it’s incredibly important that they honor them as much as possible. And therapists should be prepared to be flexible when teaching new skills. If your first way of teaching wasn’t effective, try a different strategy!

It’s also important to recognize that the human experience is complex and filled with “gray” areas that can be challenging for someone with a social-communication disorder like autism. Part of the therapist focus in treatment can be on making abstract information more concrete; in other words, therapists can help demystify some aspects of the life experience by finding ways to make it easier to make sense of. Strategies to effectively do this will vary for each individual with autism; making information visual is a big first step toward this. If a therapist is attempting to identify what parts of friendship are easy or hard, rather than asking an open-ended question they might prepare a sorting activity with pre-loaded answers or examples. Instead of asking “how do you feel?” a therapist might instead provide possible answers and have the client choose which feel accurate. A therapist might also focus less on the name of the emotion and more on how it feels in the body, which is an excellent precursor to teaching coping and relaxation skills for clients of any age. While all of these strategies can be done with zero cost to the therapist, there are also curriculums developed by a variety of skilled professionals in the autism field that are shared with other resources at the end of this article.

In addition to making therapy more concrete from the beginning, it’s also recommended that any therapist consider the length of time that is most effective for that person for each session. Typical therapy sessions are 50 minutes long. Does this length of time work for this client? If not, what does work best for them? For individuals with intellectual and developmental disabilities including autism, research also shows that progress tends to take longer, so more sessions of therapy over a longer length of time are recommended.

And lastly, therapists should take time to build a strong trusting relationship with autistic clients. The type of relationship a client is to have with a therapist can be quite confusing – how is this different than a friendship? What information do I tell them, and how is this different than what I might tell my boss, my friend, or my parent? To answer these questions, it can be incredibly helpful to provide visual information (written, diagrams, pictures) to clients to concretely and explicitly show them what the therapist role is, what the therapist can and cannot do, and what to expect throughout treatment. In this way, therapists are taking areas that are unclear or unspoken and attempting to make them very clear. Therapists will also likely need to revisit these boundaries as treatment progresses, providing reminders (and even showing the visual that was created) about what the therapist role is and how that might be similar and different from other relationships the client has.

 

Resources

In North Carolina, there are some key resources to review and use for individuals who have diagnoses of mental illness and autism (or other intellectual and developmental disabilities).

  • For children, the NC Department of Health and Human Services considers them “children with complex needs” and has a website with resources and information found here: https://complexmhidd-nc.org
  • North Carolina Systemic, Therapeutic, Assessment, Resources and Treatment (NC START) is a community-based crisis prevention and intervention support for anyone with autism or an I/DD who also has high behavioral needs and/or a mental health diagnosis. The program is statewide and you can found out more specifics as well as how to get on the waitlist for support at https://www.ncdhhs.gov/media/7933/open
  • The TEACCH Autism Program through UNC provides diagnosis as well as treatment across the lifespan, including adapted cognitive behavioral interventions for children and adults. You can get connected to your closest TEACCH center through their website at https://teacch.com
  • The Duke Center for Autism and Brain Development provides diagnosis, treatment, and medication support for individuals with autism. To learn more, visit their website at https://autismcenter.duke.edu/
  • FACES For Autism at NC State is a program that functions to specifically support black families raising children with autism. On the FACES website you can find recent research completed by FACES-affiliated professionals, community outreach opportunities, resources, and training: https://sites.google.com/ncsu.edu/facesprogram/home (also follow them on Instagram for quick visual reminders of upcoming community trainings or activities!)
  • Psychology Today has an online resource listing of therapists in your area. You can search by “issue” (autism) and what type of insurance the therapist accepts. This can be a great way to find local providers who report they can provide therapy to someone with autism – we always recommend you verify if/when you call that they have the training needed and that they accept your insurance: https://www.psychologytoday.com/us
  • The Social Thinking curriculum can be a helpful way to support understanding of the nuances of social environments and relationships by making information visual and more concrete. To learn more about Social Thinking, visit their website: https://www.socialthinking.com/
  • For anyone with autism and a mental illness, we recommend you connect with your local Managed Care Organization (MCO) to see if there are any additional resources to help. You can find the MCO that works in your county at this link: https://www.ncdhhs.gov/providers/lme-mco-directory

 

Upcoming Webinar: Autism & Mental Health / Autismo y Salud Mental

Join us on November 17 at 11:30am as we address the topic of autism and mental health in our live webinar. Note: This live webinar will be simultaneously translated into Spanish. Register: https://us06web.zoom.us/webinar/register/WN_XnBkqDz_T2CVJ86A9qDxKQ

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