Autism and anxiety in adults

Studies show that up to 50% of autistic adults have an anxiety disorder – twice that of neurotypical adults – making it one of the most common co-occurring conditions of autism spectrum disorder. Symptoms can include restlessness, difficulty concentrating, sleep problems, headaches, stomachaches and even increased heartrate and rapid breathing. But even things like withdrawal, nail biting, obsessive thoughts and an inability to eat can be signs of anxiety. What makes identification tricky is that traits that characterize autism, including social deficits and restricted interests, can mimic symptoms of anxiety. Compounding the problem is that diagnostics to screen for anxiety were developed for neurotypical people, leaving many autistic people misunderstood and/or under- or misdiagnosed.

The risk: untreated and poorly treated anxiety in autistic adults is known to lead to depression, aggression and even self-harm.

One possible solution: autism-specific anxiety management. Recently neuroscientists discovered structural differences in autistic people’s amygdala, the brain’s emotion and fear center, that indicate anxiety is different for those with ASD than it is for everyone else. It only makes sense then that management would be different for autistic people.

What does this look like? Unfortunately, few studies have been conducted on the treatment of anxiety in autistic adults, and fewer useful conclusions around best practices have been made. So we went straight to the source and asked a panel of autistic adults, all whom have been dealing with anxiety since childhood. Below they share their experiences, both positive and negative, with popular and alternative strategies. They also share a collective message: there is no one-size-fits-all strategy to manage your anxiety, so explore and try different options.

Strategies to help reduce anxiety in autistic adults

Cognitive Behavioral Therapy (CBT)

CBT is a common type of talk psychotherapy. Working with a therapist you work to identify negative thinking so you can view situations differently and respond to them more effectively. CBT is not adapted for autism though many autistic people try it.

“When I started going to counseling in my late teens, I didn’t find CBT very helpful,” said Lydia Wayman, self-advocate, author and frequent contributor to Autism Speaks. She also sought help for handling her emotions through dialectical behavioral therapy (DBT), which is based on CBT. “I learned about changing my thoughts in cognitive behavioral therapy. But I don’t treat anxiety as a thought. Instead of a feeling, I now recognize it as a change in how my brain is processing information.”

She admitted though as she has gotten older, she has learned that it is worth it to revisit strategies that didn’t work in the past.

Read more about how Lydia learned to recognize and manager her anxiety.

“I couldn’t put the CBT and DBT skills to use when I was learning about them, but I now find concepts such as cognitive distortions, mindfulness, and distress tolerance to be helpful in daily life,” she said.

Interoception Therapy

Interoception is the ability to notice and connect bodily sensations with emotions. It is an important in developing self-regulation skills. An example is feeling hungry or thirsty and knowing to go eat or drink. Individuals with ASD often have lower level of interoceptive awareness than their neurotypical peers. For instance, it is not uncommon to hear an autistic person say they forgot to eat or set alarms to eat so they remember to do so.

Interoceptive therapy is a form of exposure therapy used in CBT. It’s aim is to tackle the senses, rather than thoughts or beliefs. A therapist will encourage you to talk about how anxiety makes you feel physically, mentally and emotionally. You may then work on recreating those sensations through controlled exercises. For example, if anxiety causes your heart to race, your therapist may have you do some jumping jacks or run in place to physical activity to purposely get your heart beating faster, gradually increasing your exposure over time. The ultimate goal is to disassociate your racing heart to anxiety.

“I used to have trouble feeling my body and realizing that I was getting upset or anxious before I got to 100,” said Chloe, an autistic adult and self-professed walking, talking encyclopedia of coping strategies who found it difficult to recall them when she needed them. “I worked with an occupational therapist using Dr. Kelly Mahler’s "The Interoception Curriculum." It took time, but I was able to learn to recognize body signals and then connect the body signals to emotions, eventually connecting the emotions to an action to help me feel better.”

Applied Behavior Analysis (ABA)

ABA therapy involves many techniques for understanding and changing behavior. Positive reinforcement is one of the main strategies used in ABA.

“I am a huge participant in selecting the goals and being a part of decisions in ABA therapy,” said Chloe. “It is very person centered. It is about helping me cope and be the best me I can be so I can accomplish the things I want. It’s not about fixing me.”

In ABA she learned strategies that help her better accept change. For example, she boxes issues. In Box 1 she will puts issues that she can control, like her own behavior. In Box 2 she will put issues she cannot control.

“There are volcano-sized problems and pebble-sized problems, even though sometimes pebble sized problems can really feel like volcano problems on the inside,” she adds. “I’ve also learned to ask for a break when I need a minute and so much more.”

Alternative Augmentative Communication (AAC)

AAC can involve unaided communication, such as sign language, or aided communication, like tablets. But they are not just for non-verbal people. They are useful for anyone who has difficulty communicating, a hallmark of autism and source of anxiety.

“I’m verbal, very verbal, but sometimes when I get anxious, frustrated or overwhelmed it can be hard to get the words out,” said Chloe who has used AAC of some kind for the past 11 years. “I use Proloquo2go on my iPad. I have pre-programmed visual pictures and phrases that I can select. I can also type in what I am thinking or feeling. I have an “anxious” folder where I can request or choose one of my coping strategies or ask a support person for help.”

Sensory Diets

Sensory Diets are tools or supports used to increase or decrease the amount of direct sensory input to your body. Noise canceling headphones and wireless earbuds playing soft music are both examples of tools that can directly change the sensory input you get from your sense of hearing. These tools also work in different ways with one adding additional sounds and the other tool restricting noise. You can use the different supports to either maintain a calm state or to change your state out of a less desirable one such as being anxious.

“I use a weighted blanket to sleep every single night because the weight helps my body and I am unable to sleep well without using it,” said Autism Speaks contributor Brigid Rankowski. She also eats specific foods for breakfast every day. The predictable sensory experience helps keep her in a calm state first thing in the morning. “It keeps me from having to make choices or decisions when I'm still waking up.”

Chloe employs similar sensory strategies proactively throughout her day. “I need to have a break where I don’t have to mask and hold it in and can just get the input my body needs” she said. “I swing, jump, jump onto a crash pad, lay under a weighted blanket, listen to therapeutic listening music, wear noise canceling headphones. All of these things help lessen my anxiety.”

She also uses schedules, visuals and social stories to help lessen her anxiety, so she knows what to expect. For instance, she plans meals on a chart that uses pictures because she does best with visuals.

Expressive Art Therapy

Studies show that expressive art therapy, including music, visual arts, creative writing, and dance, among others, can help relieve anxiety by calming your nervous system and distracting you from ruminating thoughts. At the very least they can teach you other skills that promote creativity and resiliency and self-awareness, all which indirectly address anxiety.

“Art therapy is one of the best tools to destress, relax and learn something about yourself even if it’s learning what activity you like to do,” said Brigid, who is also a professional Mermaid and executive director of The Way We Move, a social circus program that brings circus arts to marginalized communities.

Exercise

Putting on a pair of shoes and going for a walk, like Lydia likes to do, may be the single best non-medical solution available for preventing and treating anxiety. Just moving your body decreases body tension and in turn lowers the feeling of anxiety. Experts say if you can get your heart rate up doing so, you can even change your brain chemistry by increasing the availability of anti-anxiety neurochemicals. Chloe’s jumping and crash pad landings count towards that, as does the aquatic therapy favored by our favorite Mermaid, Brigid. Spending 30 minutes in the water doing laps or even just floating is a proven to reduce anxiety. Swimming's added bonus: it encourages a cyclical breathing pattern which relaxes the mind and muscles and in turn improves organ function.

Medicine

Medicine for autism is a complicated topic, especially when it comes to prescription drugs. A class of antidepressants called selective serontonin reuptake inhibitors (SSRIs) are commonly prescribed to autistic adults to treat anxiety. But they do not work for everyone and all medicines have side effects. Qualified medical professionals should always be consulted first when taking any prescription medicine.

Several complementary and alternative medicines (CAM) like melatonin for sleep and Chinese herbal medicines for digestion have also been used to treat symptoms of anxiety.

“I'm a medical cannabis patient and I need to medicate specifically to be able to eat. I even have multiple alarms reminding me to take it as I lose track of time,” said Brigid. “It is the same thing for me as a medication because often I will be having a lot of symptoms around anxiety or pain and start to feel worse until I remember I can take something for it. I think it's like how other people may use aspirin or ibuprofen.”

Experts agree that CAM and cannabis products hold promise as therapeutic alternatives to treat symptoms of autism, like anxiety. But just like prescriptions, they do not work for everyone and can have adverse effects. More scientifc studies are needed to make specific determinations. Autism Speaks held a consensus conference in 2018 to encourage discussion about the state of the research on cannabis and autism.

For more discussion among autistic adults on the subject of anxiety check out our podcast: Adulting on the Spectrum: Dealing with anxiety and navigating autistic spaces.