The psychiatrist and researcher discusses why it can be difficult to diagnose anxiety in people with autism and describes some of the most effective treatments.
Many people with autism experience anxiety. In fact, it’s one of the most common conditions to occur together with autism. Among the SPARK participant community, 45 percent of independent adults with autism also report a professional diagnosis of anxiety.
Antonio Hardan, director of the Autism and Developmental Disorders Clinic at Lucile Packard Children’s Hospital at Stanford, in California, began treating anxiety in individuals with autism nearly 20 years ago. He is both a psychiatrist who treats patients and a scientist who studies the effectiveness of different interventions.
Hardan talked with SPARK about the typical symptoms of anxiety in people with autism and discussed some of the best-studied treatments. For more on this topic, check out Hardan’s webinar for SPARK.
SPARK: How common is anxiety in people with autism?
Anxiety is one of the most prevalent conditions to occur along with autism. Some studies estimate that more than 80 percent of people with autism also have anxiety. When I see a new individual with autism, anxiety is one of the first things I try to assess.
How has our understanding of anxiety in autism changed in the last 5 or 10 years?
The most important step to date is becoming more aware of the presence of anxiety symptoms in children with autism. When I started in the field about 20 years ago, few people were talking about it. Now there are lots of publications and lots of conference sessions on autism and anxiety. Insight is a very good first step. If you don’t have insight into what’s going on, you can’t study it.
Why are people with autism also prone to anxiety?
There are two possibilities: anxiety might be part of autism itself or it might occur along with the condition. A large number of individuals with autism have symptoms of anxiety. So it’s possible that the same biological changes that lead to the disorder might lead to anxiety. It’s also possible that people with autism develop anxiety as a consequence of social or sensory differences. For example, if someone has social deficits, they might have social anxiety because they don’t have the skills to interact with others. Someone with sensory sensitivity might be anxious when in an environment that is too stimulating.
How does anxiety differ among people with autism?
Scientists are starting to learn more about the different types of anxiety that people with autism have. Some kids have unusual and specific fears, such as fear of a baby crying or fear of a song, like “Happy Birthday.” One child I treated had a significant fear of butterflies. He wouldn’t go outside because of it.
Behavioral symptoms of anxiety in people with autism include pacing, flapping, and an increase in other repetitive behaviors, temper tantrums, moodiness, a lower tolerance of frustration, sleep disturbances, difficulty concentrating and crying easily.
Is it difficult to diagnose anxiety in people with autism?
It’s challenging to diagnose because anxiety has two main components: internal and behavioral. The behavioral component often doesn’t manifest until symptoms are severe. The internal state consists of feelings that cannot be observed by others — you worry or your heart pounds, for example. Individuals with autism have a limited ability to express their inner state. So they may have a hard time describing the more internal symptoms of anxiety. In people with autism, we often see anxiety manifest in behavior, such as throwing a tantrum or running away from a loud environment.
Doctors often assess anxiety via questionnaires. These questions are designed for typically developing people and may focus more on the internal symptoms than the behavioral ones. For example, typical surveys for measuring anxiety don’t ask about specific fears, like fear of butterflies.
Some researchers are developing an autism-specific scale for assessing anxiety, where we can identify and quantify these symptoms more accurately. Once we do that, we can try to understand the underlying biological mechanisms. People are using heart rate monitoring, sweating, breathing, and skin conductance to try to study the biology and ultimately develop better treatment.
Given those challenges, how do you diagnose it?
The most important first step is for the clinician to be mindful of the prevalence of anxiety, so that they can look for it and ask questions that will identify anxiety symptoms. When clinicians see these kinds of behaviors, they can talk with the family about whether they are related to anxiety. Sometimes kids with autism come in because they are hyper. The family might wonder if their child has ADHD. But that hyperactivity is sometimes related to anxiety. If the child is treated for ADHD and symptoms don’t improve, you might need to reconsider the diagnosis and try treating for anxiety.
What are some of the most effective treatments for anxiety in people with autism?
The top treatment for individuals with autism and strong verbal skills is cognitive behavioral therapy. There have been a couple of review studies supporting its effectiveness in this group.
What is cognitive behavioral therapy?
Cognitive behavioral therapy aims at helping patients understand the thoughts and feelings that influence their behaviors. For every feeling, there is a thought that triggers it. Some thoughts are appropriate and some are distorted. The premise of cognitive behavioral therapy is to identify the thought linked to a feeling and determine whether it’s appropriate or distorted. The therapist works with the individual to challenge the distorted thought and associate a more appropriate thought with that feeling.
For example, say you’re walking down the street and see a friend and wave at them, and they don’t wave back. You might think the person doesn’t care about you or is angry with you. The idea is to take that thought and try to challenge it. Ask yourself, what are other scenarios to explain why they didn’t say hi? Perhaps they didn’t see you or they were preoccupied and did not notice you. Cognitive behavioral therapy helps train the individual to consider other possibilities than the automatic negative thoughts that an individual might be used to considering first. The approach doesn’t work for everyone with autism and strong verbal skills, however. It generally works best in people who have good social awareness and cognitive function.
What about for people who have poor verbal skills or lower levels of social awareness and cognitive function?
A few approaches include using systematic desensitization, modeling, and reinforcement. For example, if a kid is afraid of going to a restaurant, a clinician will work with families to develop a step-by-step approach to slowly expose him to that fear. They might start by parking near the restaurant for a few minutes without going in and staying for longer and longer stretches of time. Next they might walk around the restaurant, taking progressively longer walks. Then they might go into the restaurant but not order anything. In other situations, parents might use gentle pressure, progressively encouraging their child to do the anxiety-provoking activities and rewarding them when they do the desired behavior. Acknowledging feelings of anxiety and role-playing can also be helpful.
These techniques have not been assessed in randomized controlled trials [the gold standard for measuring a treatment’s effectiveness] because these kinds of studies are more difficult to do in people with poorer verbal skills.
Medications can also be effective, as is a combination of medication and behavioral therapy. I think that’s where the future should be — combined treatment.
When should families consider drug therapy?
I usually recommend cognitive behavioral therapy for individuals with strong verbal skills. If that has limited success, I’ll try medication. Many children with autism take anxiety medication. One recent survey estimated that at least 25 percent of kids with autism are receiving antidepressants, which often also treat anxiety. However, the evidence for treating anxiety in people with autism with drugs is not as strong as that for cognitive behavioral therapy. We use medications because our clinical experience suggests that anti-anxiety antidepressants work. But we don’t have strong scientific evidence to support that. Large randomized trials using these medications are needed to help guide clinical practice.
What role can parents play?
Educating themselves about anxiety is important. It’s helpful to recognize that people with autism can express anxiety in very different ways. Parents can then bring their observations to the attention of the team they work with. Parents should make sure their kids are receiving appropriate therapies, such as cognitive behavioral therapy. Checking a clinician’s credentials to make sure they are trained in cognitive behavioral therapy is important, especially if their child is not getting better.
With regard to treatment, parents can help a lot but need guidance from a therapist or physician. For example, I work closely with families on progressive desensitization, one of the basic principles of treating anxiety. Children who come to our clinic are sometimes afraid of having their blood pressure measured. We ask parents to buy a cuff and let kids play with it. Then the kid practices taking the parents’ blood pressure, then tries wearing the cuff. We have some kids who would scream when we first tried to take their blood pressure. Six months later, they come to the exam room and extend their arm. It works like magic for some kids.
How do you hope the field of anxiety and autism will evolve in the next few years?
We need more studies to better understand anxiety in autism and to develop more effective treatments. We can treat anxiety in typically developing individuals quite effectively, so there is hope for treating it in people with autism. While we are waiting for interventions to treat the core features of autism, we can for sure develop interventions to treat anxiety.