Autistic Anxiety

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After several weeks of close observation, Siegel and his colleagues managed to piece together Kapothanasis’ behaviors into a clear diagnosis, based on criteria outlined in the “Diagnostic and Statistical Manual of Mental Disorders.” In addition to his autism, “he was kind of screaming anxiety — if you’re looking for it,” Siegel says. Until then, it seems no one had been. When Kapothanasis entered the clinic, he was on his third antipsychotic medication. Some are approved to treat aggression as a feature of autism, but none treat anxiety. “It’s fair to say that he was not being treated for anxiety,” Siegel says.

There are many reasons it took nearly six years for Kapothanasis to get the help he needed. Doctors may have assumed that his aggression and tendency to hurt himself were part of his autism, Siegel says. Traits that characterize autism — including social deficits, stereotyped movements and restricted interests — can mask or mimic symptoms of anxiety. During a visit to an outpatient clinic, for example, Siegel points out a nonverbal young woman with autism who repeatedly traces a pattern in the air with her hands. At first glance, her gestures resemble ‘stimming,’ the repetitive behaviors often seen in autism. But she does it at specific times, Siegel says, suggesting a ritual related to obsessive-compulsive disorder — a form of anxiety.

Compounding the problem, many people on the spectrum, like Kapothanasis, cannot tell their caregivers or doctors what they are feeling or thinking. Those who can may still struggle to identify and understand their own emotions — a phenomenon called alexithymia — or to articulate them to others. Because of these factors, the clinical questionnaires designed to ferret out anxiety traits in neurotypical individuals are woefully inadequate for many people with autism. The tests may also miss children with autism, who can have unusual phobias, such as a fear of striped couches or exposed pipes.

“People on the spectrum have really unique, distinct ways of perceiving the world, and also have distinct experiences, which is why we’ll see classic things like social phobia and generalized anxiety, but also maybe these more distinct, more autism-related manifestations,” says psychologist Connor Kerns, assistant research professor at the A.J. Drexel Autism Institute in Philadelphia. Kerns and others are working on new ways to measure both ordinary and unusual forms of anxiety in people with autism. This work could help clinicians better detect the anxiety that hides behind autism, reveal the underlying mechanisms and lead to better treatment.

Anxiety may seem to be a prominent feature of autism, but it is not one of the diagnostic criteria. “People say, ‘Oh, it’s just part of autism, everyone with autism has anxiety.’ That is 100 percent not true,” Siegel says. “I’ve got 12 kids sitting outside my door at my hospital right now, and several of them do not have anxiety.”

Studies attempting to pin down the proportion of people with autism who also have clinically significant anxiety have produced a staggeringly broad range, from 11 to 84 percent. The discrepancy in these reported rates is “fundamentally unbelievable,” says Lawrence Scahill, professor of pediatrics at Emory University in Atlanta. “Whenever you see a range like that, you know that it’s driven by the source of the sample, where they got the sample from, the methods used to do the assessment and how quick they were to pull the trigger on a diagnosis.”


What is believable, he says, is that autism and anxiety are not independent conditions that sometimes co-occur. In fact, children with autism may be inherently more likely to develop anxiety than their typical peers. But the overlap in features between the two conditions makes diagnosing anxiety extremely difficult. “I’m convinced that the measurement of anxiety in children with autism has to be different,” Scahill says.

The traditional tests for anxiety, such as the Screen for Child Anxiety-Related Emotional Disorders and the Spence Children’s Anxiety Scale, rarely hold up as well in children with autism as they do in the groups they were designed for. In a 2013 study, Scahill and his colleagues investigated one particular test — the 20-item anxiety scale of the Child and Adolescent Symptom Inventory (CASI) — in parents of 415 children with autism.

How the researchers framed the test’s questions significantly affected how the parents responded. Less than 5 percent of the parents endorsed statements describing anxiety that require a child to express herself — for instance, “worries about physical health” or “complains about feeling sick when separation is expected.” By contrast, parents were most likely to agree with statements that rely on their observations, such as “acts restless or edgy.” This trend was especially true among parents whose children have intellectual disability

In unpublished data, the researchers combined the 52 new questions with the 20 questions on the CASI and gave them to 990 parents of children with autism. Based on the responses, they weeded out 31 items that were either redundant, seemingly irrelevant or rarely endorsed by the parents. Based on the remaining 41 queries, they found that roughly one-quarter of the children in the study have high levels of anxiety, another quarter have low levels of anxiety, and the rest fall somewhere in between.

In 2014, Kerns and her colleagues developed an adapted version of the Anxiety Disorders Interview Schedule (ADIS) — a one- to two-hour clinical interview with both parents and children, designed to flag anxiety. Based on interviews with 59 children who have autism and their parents, the researchers documented examples of anxiety that don’t fit the standard definition. Although nearly half of the children had traditional forms of anxiety, 18 of them also showed signs of non-traditional anxiety; another 9 children showed only the unusual forms of anxiety, such as an intolerance of uncertainty.

So Kerns and her colleagues expanded their ‘ASD-specific addendum’ to flag non-traditional anxiety traits that the standard screen might miss: fear of novelty or uncertainty; fear of social situations for reasons other than social ridicule; excessive worry about being able to engage in a special interest; and unusual phobias. The section on fearing change asks, for example, “Does your child react if the change is positive (e.g., getting out of school early)?” The addendum also includes questions about a child’s social skills, sensory sensitivities and repetitive behaviors to help clinicians differentiate anxiety from autism features. For instance, it asks about a child’s history with bullying or social rejection to clarify whether a child is avoiding social events for a good reason — because her bully might attend — or because she is so traumatized by bullying that she fears any social outing. Only the latter would qualify as anxiety. “We want to look for when anxiety has overgrown the actual threat,” Kerns says. Her work solidifies what many clinicians knew anecdotally. “[Kerns] put a description to something that we had been seeing but didn’t have a word for,” Siegel says.

Why a fear of the unknown is a strong feature of autism is less clear. Some researchers speculate that people with autism have trouble predicting future events, heightening their sense of uncertainty. Other work implicates sensory sensitivities and poor verbal comprehension, suggesting that different aspects of autism feed into this type of anxiety.

Scientists are also looking for less subjective ways to measure anxiety in autism using various physiological and brain-imaging methods. John Herrington at the Children’s Hospital of Philadelphia and his colleagues are in the midst of a long-term study of 150 children, roughly half of whom have autism, looking at measures of stress, such as heart rate variability and sweat levels. They are also using a technology that tracks where someone is looking to try to distinguish a lack of social interest from social anxiety. Initial findings from their brain-imaging data suggest that the amygdala, a brain region involved in making fearful associations, is smaller in children with autism and anxiety than in those with autism alone.

Another team is also homing in on the amygdala. Mikle South’s team at Brigham Young University is exploring the theory that instead of having an overactive fear response, people with autism have trouble finding a ‘safe space’ and, as a result, are afraid of everything. To test that idea, he is interviewing some adults with autism about their specific fears and scanning others’ brains. More than half of the people he talks to are consumed with worry, he says. “They worry about so much all of the time, they worry about everything,” South says. “There’s nothing they’re not worrying about.”

Breaking the cycle of fear is never easy, but it may be especially difficult for someone with autism. For Chaston, help came from what he considered an unexpected source — a self-help book on mindfulness that his mother foisted on him. Practicing mindfulness helped him develop strategies to deal with things that annoyed him. The best-documented approach for treating anxiety in children with autism, cognitive behavioral therapy (CBT), works on similar principles. CBT combines talk therapy with repeated exposures to the source of the fear to change unhelpful thought patterns and behaviors.

That said, many children with autism may not benefit from traditional forms of CBT, says Eric Storch, professor of psychology at the University of South Florida in Tampa. Storch’s team has found that children with autism who benefit from CBT do not always maintain those gains: Those who improve only a little sometimes do much better one to two years later, whereas some of those who respond well later relapse. “It wasn’t sticking the way we would predict,” Storch says. The findings suggest that children with autism need therapy for longer, and with more follow-up, than their typical peers — “a critical difference in the treatment approach,” he says.

There are no drugs approved for treating anxiety in autism. Last year, Vasa and her colleagues published a set of recommendations for clinicians who prescribe anxiety drugs to children on the spectrum. Among her guidelines: Raise doses slowly, as these drugs may exacerbate irritability.

There are approved drugs for autistic anxiety - the low dose is specific to ASD, even if the drugs are for both populations. NTs need higher doses:
https://www.scientificamerican.com/arti ... at-autism/

Low dose Clonazapam (aka Klonopin) worked brilliantly for me. Raised the GABA levels just enough for me to go from anxious striving to calm thriving.