Date Published: July 8, 2020
This is part one of a two-part series on anxiety and autism. View part two, Diagnosing and Treating Anxiety in People with Autism.
As a child, Trudi Sullivan would become very anxious by changes in her routine. No matter how hard she tried, she could not calm herself when that happened. Many years later, she was diagnosed with both autism and an anxiety disorder. She doesn’t believe that’s a coincidence. “I think it’s all connected,” she says.
Anxiety is one of the most common mental health disorders affecting children and adults on the autism spectrum. Anxiety can cause extreme fear and dread, sweating, restlessness, and even chest pain. “A lot of us do experience anxiety, and we struggle with it in our own ways,” says Jairo E. Arana. Like Sullivan, Arana is an autistic member of the Community Advisory Council for SPARK, the largest study of autism.
Anxiety takes an unusually large toll. About 40 percent of youth with autism — and up to half of autistic adults — meet the clinical criteria of an anxiety disorder, such as social anxiety, phobia, panic disorder, or generalized anxiety, according to research studies.1-7 Among SPARK participants who have autism, anxiety disorders affect 18 percent of children, 34 percent of adults who have a guardian, and 52 percent of independent adults. By comparison, in the general U.S. population, 7 percent of children and 19 percent of adults have anxiety disorders, according to federal health statistics.
Children who have autism may express anxiety by avoiding new tasks, running away, hitting, and having tantrums, explained child psychiatrist Antonio Y. Hardan, M.D., in a presentation for SPARK members.8 As many parents and teachers know, those are some of the same behaviors that are considered common to children with autism. So how do you separate autism from anxiety? And what can be done to help?
Growing up with Autism and Anxiety
When Lindsay Gilroy was a child, she desperately wanted things to remain the same. “Insistence on sameness” is a symptom of autism, which Gilroy has, but it also may be related to anxiety.9 Gilroy would get very upset if her mother closed the kitchen cabinet doors, or if she left her sight. “The world was so unknown and stressful to her. I was her safety net,” explains her mother and guardian, Susan Gilroy, of Massachusetts.
Lindsay Gilroy’s anxiety got worse with age. “In her late teens, things really started falling apart,” her mother says. Lindsay, who is now 41, learned coping strategies, such as deep breathing and counting exercises, and clenching her hands when anxious. She also began taking anti-anxiety medication. “We’ve seen a marked improvement, and in my mind, it’s about a better quality of life for her,” Susan Gilroy says.
As Gilroy’s experience shows, symptoms of anxiety and autism may overlap. Does a child have a tantrum when separated from a parent because he has separation anxiety — a type of anxiety disorder — or because he does not like change, an autism symptom? Does a teenager stay in her room because she’s not particularly interested in socializing — a sign of autism — or because she has social anxiety?
Theories about Anxiety and Autism
In the webinar for SPARK, Hardan, the psychiatrist, described three ways of thinking about anxiety and autism:
- Anxiety is separate from autism. It looks exactly the same in people with autism as it does in others. Or,
- Autism increases the risk of anxiety. Difficulties in understanding the social world, or bullying, can trigger anxiety.10 Being overly sensitive to loud noises, bright lights, or other sensory input – also common to autism – can make someone feel anxious. Or perhaps,
- Anxiety is simply part of autism, contributing to the need for sameness and predictability, and the avoidance of social situations.
That last theory is the subject of debate, Hardan says. As he and others explained, anxiety and autism are treated differently.
If you believe anxiety is part of autism, “there might be a tendency to overlook the anxiety and not treat it,” says Roma A. Vasa, M.D., a child psychiatrist who specializes in both anxiety and autism at Kennedy Krieger Institute in Maryland. “The standard treatments for autism — speech therapy, occupational therapy, and special education — are not going to target fears and anxiety.”
It is important to recognize and treat anxiety, she says. “Anxiety can make autism symptoms worse. It can interfere with [educational] programming and cause behavioral disturbances in children. In adults, it can interfere with job placement and independent living,” Vasa says.
What are Anxiety Disorders?
Anxiety describes a collection of disorders that involve excessive fearfulness of things or situations. Some anxiety disorders are:
- Social anxiety disorder involves a fear of being around other people, having conversations, and being judged. This is relatively common in people who have anxiety and autism.11-12
- Generalized anxiety disorder is excessive worry about various things, such as school or work. Symptoms include being restless, distracted, unable to sleep, tense, and irritable.
- Panic disorder occurs when someone has recurring and sometimes unexpected attacks of intense fear, trembling, sweating, and other symptoms, which can last several minutes.
- Phobias are extreme fears of things that a person then avoids, such as animals, heights, or blood.
- Separation anxiety disorder involves an intense worry about being away from family or home.
Children with autism may have textbook symptoms of anxiety, but sometimes their symptoms and fears may be different than expected. Some may have anxiety about minor changes in routine, the happy birthday song, losing access to a favorite item, or bubbles, according to one small study.13
Social Disinterest or Social Anxiety?
Social anxiety, which involves a fear of being judged and humiliated, also may look different in autism. Some people who have autism worry about making social mistakes and being labeled as “not normal.”14 But others may dread or avoid social situations without necessarily fearing rejection. They may have “other specified anxiety disorder,” which is anxiety that does not fit neatly into another category, say some researchers.15
Social anxiety can affect schooling. One study of children with autism found that those who had symptoms of social anxiety made less progress in elementary school than those who did not.16 Youth also may have had bad experiences that cause anxiety about social situations. For example, children on the spectrum are more likely to be bullied than other children.17
Navigating a social world that is not geared to you can trigger anxiety, say some adults on the spectrum. “You don’t pick up on social cues, and you run into conflict with people. They don’t get you, and you don’t get them, and that triggers anxiety, too,” explains Trudi Sullivan, of California.
Breaking an unwritten social rule can have harsh consequences, says James Williams, an autistic member of SPARK’s Community Advisory Council. “When you are losing friends and being rejected — which to you seems out of the blue and you don’t understand why it’s happening — that can cause anxiety in anyone. You wake up every morning and wonder if someone will still be your friend,” he says.
Having an anxiety disorder can be difficult. Do children and adults with autism face additional challenges with getting an anxiety diagnosis or treatment? See part two of this series, Diagnosing and Treating Anxiety in People with Autism.
This is an updated version of an article that appeared on IANcommunity.org in December 2017.
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