Date Published: July 9, 2020
This is part two of a two-part series on anxiety and autism. View part one, Anxiety’s Toll on Children and Adults with Autism.
Children and adults on the autism spectrum are more likely to have an anxiety disorder than others. And research suggests they also may face challenges with getting an anxiety diagnosis and treatment.
For some, the social and communication challenges at the heart of autism may complicate the process of being diagnosed with anxiety. A psychiatric diagnosis often relies, at least in part, on patients’ ability to describe their symptoms. Some youth with autism have language or learning problems that make it harder for them to discuss their symptoms and emotions.1 Even those who speak fluently may have trouble identifying and describing their feelings, a condition called alexithymia.2
Also, the standard questionnaires and assessments used to diagnose anxiety may not work as well in youth who have autism spectrum disorder (ASD).1 As one group of researchers concluded in 2014, “measuring anxiety in ASD is fraught with uncertainty.”3
Fortunately, researchers are developing tools that will make it easier to diagnose anxiety in children and teens on the spectrum, says Roma A. Vasa, M.D., a child psychiatrist who specializes in both anxiety and autism at the Kennedy Krieger Institute in Maryland.
The new tools will help doctors with their task of separating autism from anxiety symptoms. “There are overlapping symptoms between the two,” she explains. For instance, does a child become upset when his routine changes because he dislikes change, or because he is scared about what will happen now that something has changed?
Anxiety takes a heavy toll on people who have autism. About 40 percent of youth – and up to half of adults – meet the clinical criteria of an anxiety disorder.4 By comparison, 7 percent of children and 19 percent of adults in the general population have an anxiety disorder, according to U.S. government health statistics.
Helping Doctors Spot Anxiety in Youth with Autism
To help primary care doctors, Vasa and doctors in the Autism Treatment Network published recommendations for diagnosing and treating anxiety in youth who have autism.1 They recommend that doctors:
- Look for physical signs, such as tremors, restlessness, sweating, body aches, and sleep problems.
- Ask the child, parents, and teachers about possible signs of anxiety. Does the child’s behavior change in certain situations?
- Address school and home problems that trigger anxiety. Bullying, learning and speech problems, and inadequate help at school may be fueling anxiety. Families under stress may need help finding respite care and behavioral therapy for their child.
- Address medical conditions, such as insomnia, or medications that may fuel anxiety.
- Consider how much anxiety interferes with daily life, and whether it occurs in different places.
After an Anxiety Diagnosis, What’s Next for People Who Have Autism?
Once someone is diagnosed with an anxiety disorder, the next step is finding treatment. Do anxiety medications and therapies, which were developed for people who do not have autism, work equally well for people on the spectrum?
That question is hard to answer. Research into anxiety treatments for children and adults on the spectrum is limited. There are no major clinical trials or proven methods to guide patients, families, or doctors as to which medications work best, for which symptoms, and in which patients who have autism. Of course, that does not mean that effective treatment is not available.
In a medical journal article, Vasa and other pediatric doctors offered advice for treating children and teenagers. For anxiety symptoms, they listed four possible selective serotonin reuptake inhibitor antidepressants. Their list was based upon data for typically developing youth.1 Some antidepressants are used to treat anxiety and obsessive-compulsive disorders. Children and teens who have autism often report one particular side effect from those drugs: “behavioral activation,” such as hyperactivity, impulsiveness, or trouble sleeping.5
Vasa’s team recommends caution. “We don’t have much data about how we should go about prescribing these medications in autism, so we recommended ‘starting low and going slow,'” and monitoring the child’s reactions, she explains. “These kids are very vulnerable to side effects.”
Other possible side effects, which are not unique to autism, are suicidal thoughts and behaviors in teens, or a worsening of mood problems in people with bipolar disorder. These drugs “should be prescribed cautiously in youth with ASD, with close monitoring,” Vasa’s team advises.1
A few small studies of autistic adults found that one antidepressant may help with obsessive-compulsive behavior, and another one with anxiety, according to another group of scientists.6 Decisions about these drugs should be made on a case-by-case basis, they concluded.
A Behavioral Treatment for Anxiety in People with Autism
One non-drug anxiety treatment has been a more frequent topic of autism research. Researchers have been testing some changes to Cognitive Behavioral Therapy, or CBT, for use with children and teens who have autism.
CBT works by helping someone change distorted thoughts he has about himself and his life. Its goal is to reduce negative feelings and unhealthy responses. This therapy has been found to be effective for depression, generalized anxiety disorder, and panic disorder in people who do not have autism.7
Researchers are adapting CBT to address some of the common characteristics of autism. These changes include using pictures, concrete language, lists, videos, or social stories, and tapping into the special interests that many people with autism have.
An analysis of 14 studies involving a total of 511 autistic youth found that individual and group CBT therapy decreased anxiety symptoms moderately.8 The studies all involved children and teens who did not have intellectual disability. The CBT programs, which had names like Cool Kids and Facing Fears, typically lasted from 12 to 16 weeks.8 In another small study of adapted CBT, almost a third of children with autism who completed group therapy at a hospital were found to be “free of their primary anxiety diagnoses.”9
“What’s been exciting is that other research groups are now trying to extend this therapy and adapt it for people with intellectual disability and for younger populations,” Vasa says.
Researchers are also looking at two characteristics that may fuel anxiety: having trouble with regulating emotions and with tolerating uncertainty, such as not knowing what will happen in the future.10 Addressing those issues may improve treatment results, Vasa says.
A small study of autistic adults found a link between higher anxiety levels and difficulties with regulating, identifying, and understanding their emotions. Those researchers said that therapies based on mindfulness may help.2 In mindfulness treatment, people may learn special breathing and relaxation techniques, meditation, and other exercises.
A few studies suggest that mindfulness and CBT are promising anxiety treatments for autistic adults. But much more work needs to be done, according to two researchers in the United Kingdom. After reviewing studies on anxiety and autism, they recommended focusing more research attention on treatment, particularly for adults and for people who also have intellectual disability.11
All in the Past
Many people on the spectrum are able to find anxiety treatments that work for them.
Trudi Sullivan, a SPARK participant, says medication, along with therapy and breathing exercises, have helped her anxiety symptoms. She used to become upset and anxious by changes in her routine. “Since I began taking medication, I no longer get upset and can’t calm down. That’s all in the past,” she says.
Finding a Mental Health Specialist
If you suspect an anxiety disorder in yourself or your child, you may talk with your doctor, who can refer you to a specialist. To find a psychiatrist, psychologist, or CBT therapist near you, see these online resources.
- The American Academy of Child and Adolescent Psychiatrists has a child and adolescent psychiatrist finder.
- The American Psychiatric Association has an adult psychiatrist finder.
- The American Psychological Association has a psychologist finder.
- To locate a CBT provider, see the Association for Behavioral and Cognitive Therapies’ therapist finder.
- Advice for primary care providers can be found in Pediatrics, Assessment and Treatment of Anxiety in Youth with Autism Spectrum Disorders.
See part one of this series, Anxiety’s Toll on Children and Adults with Autism.
This is an updated version of an article that appeared on IANcommunity.org in January 2018.
- Vasa R.A. et al. Pediatrics 137, S115-123 (2016) PubMed
- Maisel M.E. et al. J. Abnorm. Psychol. 125, 692-703 (2016) PubMed
- Lecavalier L. et al. J. Autism Dev. Disord. 44, 1128‐1143 (2014) PubMed
- van Steensel F.J. et al. Clin. Child Fam. Psychol. Rev. 14, 302-317 (2011) PubMed
- Walkup J. and M. Labellarte J. Child Adolesc. Psychopharmacol. 11, 1-4 (2001) Abstract
- Williams K. et al. Cochrane Database of Systematic Reviews 8(2013) Abstract
- Butler A.C. et al. Clin. Psychol. Rev. 26, 17-31 (2006) PubMed
- Ung D. et al. Child Psychiatry Hum. Dev.46, 533-547 (2015) PubMed
- Kilburn T.R. et al. J. Autism Dev. Disord. Epub ahead of print (2020) PubMed
- Uljarevic M. et al. Mol. Autism 8, 36 (2017) PubMed
- Rodgers J. and A. Ofield Curr. Dev. Disord. Rep. 5, 58-64 (2018) PubMed