It All Become Too Much

Normal Day to Overwhelming

On a hot July Day, Gregory Kapothanasis went to his day program for adults with developmental disabilities; just he had for the past four years. He had never had any trouble before, but on that particular day, he came unglued and grabbed a staff member by the arm hard enough to cause bruises. During the daily field trip, he began screaming and hitting his bus seat.

No Outlet for Explanation

Kapothanasis has autism and can speak only a few words. Thus, he cannot explain what had set him off that morning. He also has a history of outbursts that had reached a peak during his late teens. His teachers sent him to Spring Harbor Hospital’s inpatient clinic, where he was eventually diagnosed with anxiety.

Anxiety Diagnosis in Autism

Difficult to Diagnose When Non-Verbal

Diagnosing anxiety in an autistic person can be difficult, especially if they are non-verbal like Kapothanasis. Even verbal people with autism, however, often have a condition called alexithymia that impairs their ability to understand, identify or express their emotions. Consequently, the questionnaires designed to help identify symptoms of an anxiety disorder are often of limited use for a patient with autism.

What is Stimming?

Many autistic patients also engage in repetitive behaviors called “stimming,” and stimming can look a lot like the ritualistic behaviors seen in obsessive-compulsive disorder. Researchers like Dr. Connor Kerns, a psychologist at the A.J. Drexel Autism Institute in Philadelphia, are looking for ways to better identify anxiety in people with autism.

Anxiety, Autism, or Both?

Variance in Diagnostic Criteria

While anxiety seems to be common in people with autism, it is not one of the diagnostic criteria. Studies are trying to identify the percentage of autistic patients with anxiety have produced an unbelievably broad range of 11 to 84 percent. According to Lawrence Scahill, a professor of pediatrics at Emory University in Atlanta, such numbers point to problems with the methodologies of the various studies.

Autism and Anxiety Similarities

To make matters more difficult, autism and anxiety share common traits, which can make it challenging to diagnose anxiety in children with autism. Scahill, therefore, argues that doctors need new ways to measure anxiety in patients with autism, for the current tests, like the Spence Children’s Anxiety Scale, don’t work very well for autistic children.

Child and Adolescent Symptom Inventory Study

In 2013, Scahill and his colleagues conducted a study of the Child and Adolescent Symptom Inventory (CASI). They surveyed the parents of 415. The team found that fewer than five percent of the parents agreed with statements that involved their child verbally expressing himself/herself but much more agreed with statements that described non-verbal manifestations of anxiety or stress like edgy or restless behavior.

Working with Parents

Scahill and his colleagues then asked the parents to help them develop a measure of anxiety just for autistic children. They worked especially closely with the parents of 45 children who had been diagnosed with both autism and anxiety. The researchers asked the parents for descriptions of their child’s behavior. They had to carefully determine which behaviors were exclusive to anxiety and which weren’t. Meltdowns, for example, could be caused by extreme anxiety or by problems related to autism. Expressions of anxiety, by contrast, included continually fretting about things that could go wrong.

Scahill’s team produced 52 new questions with CASI’s 20 questions and gave them to 990 parents of autistic children. The parents agreed with 41 of the questions but dismissed the other 31 as irrelevant or redundant. The researchers used those 41 questions to determine that about 25 percent of the children were highly anxious, another 25 percent were rarely anxious, and the remaining 50 percent were somewhere between the two extremes.

Science of Anxiety

Interviewing Children and Parents

In 2014, Dr. Kerns and her colleagues interviewed 59 autistic children and their parents, and they found that many of the children displayed atypical signs and symptoms of anxiety. Such symptoms included unusual phobias, fear of uncertainty, extreme worry about being able to pursue a special interest, and fear of social situations not related to fear of humiliation. Dr. Kerns and her team thus modified the Anxiety Disorders Interview Schedule (ADIS) to include questions about such items like how a child reacts to change. They also added questions about a child’s reasons for their anxiety. For example, a child might fear social gatherings because they’re worried about the school bully as being one of the attendees.

Prospective Strategy

Scientists also want to find less subjective ways to measure anxiety in autistic patients. For example, John Herrington at the Children’s Hospital of Philadelphia is using various physiological and imaging techniques to detect stress in children with autism. They are using brain imaging technology to study the amygdala, a region of the brain that controls fear. The researchers are also studying physiological signs of stress like sweat levels and heart rates.

Treatments for Anxiety in Autistic Children

Practicing Mindfulness

Treating anxiety in an autistic person can be difficult. The best-documented method, cognitive behavioral therapy (CBT), emphasizes practicing mindfulness. It combines talk therapy with desensitizing the patient to a source of fear through repeated exposure.

Unfortunately, CBT does not always work for children with autism. Even when it does, the effects don’t always last. Also, children with autism have trouble applying lessons learned in therapy to other parts of their lives. Experts thus recommend including caregivers in the therapy sessions, so they can encourage the children to do so.

A group of researchers at the University of California, Los Angeles (UCLA) have developed a modified form of the CBT. It recommends helping a child master social skills before thrusting them into a frightening social situation. A small 2009 study demonstrated the modified form of CBT to be effective in treating autistic children.

No Medications Approved for Treatment

So far, there are no medications approved for treating anxiety in autistic children. Roma Vasa, a psychiatrist at the Kennedy Krieger Institute in Baltimore, recommends that doctors who decide to use medicines raise doses slowly, for some of the drugs can increase irritability.

Kapothanasis’ doctors prescribed anti-anxiety medications for him, and the results have been quite beneficial. They also worked on his communication skills; while he can’t talk, he can point to photographs of things in his daily life and study pictures to keep track of his schedule.