Next to the fridge in Hilda Ruiz’s kitchen, a calendar reminds her 12-year-old-son Daniel of upcoming appointments—swimming lessons for him and his two siblings, twice-a-week therapist visits, a dermatologist appointment, a baby shower.
The calendar helps keep her entire family in the know, but for Daniel, it helps manage anxiety.
The Grand Prairie family has known since Daniel was a baby that he fell on the autism spectrum. (He was diagnosed at age 2.) They’ve since learned that changes in his daily routine lead to troubling, anxious behaviors. He repeatedly asks about scheduled events coming up, and sometimes he refuses to do things that aren’t on the calendar.
“A therapist comes [to our home] once a week, but one time she had to change the day she came, and I forgot to make the change on the calendar,” Ruiz says. “He freaked out. He has to know [about changes] ahead of time,
otherwise he gets very anxious.”
Though he hasn’t been officially diagnosed with an anxiety disorder, Daniel, who falls on the low-functioning end of the autism spectrum, is one of a large percentage of children with autism who exhibit anxiety behaviors.
Growing evidence suggests there’s a strong link between the two disorders. Anxiety is considered a comorbid disorder of autism, meaning patients often have the two simultaneously. In fact, research published in the journal Neuropsychology found that up to 80 percent of children with
autism spectrum disorder (ASD) experience clinically significant anxiety, particularly social phobia, generalized anxiety disorder (GAD), obsessive-compulsive disorder (OCD) and separation anxiety disorder (SAD).
That’s a far larger percentage than in the general population, says Patricia Evans, a neurologist at the Center for Autism and Developmental Disabilities at Children’s Health in Dallas and professor of pediatrics, neurology and psychiatry at UT Southwestern Medical Center. “Children on the spectrum tend to exhibit much more anxiety [than neurotypical children], and it tends to show up in unusual ways,” she says. For example, a child with autism might be more likely to exhibit anxiety through repetitive movements, like flapping their hands or flicking their fingers.
But while research and expert knowledge on the two disorders are gaining traction, managing—and even detecting—anxiety in kids on the autism spectrum remains a challenge.
Symptom, or Something More?
Ruiz says anxiety has always been a part of her son Daniel’s autism. “Kids with autism, they look for comfort,” she says. “And to comfort themselves, they do repetitive behaviors. I think anxiety is part of the autism.”
When he’s anxious, Daniel repeats words like “home,” a signal that he is uncomfortable and wants to go home but can’t explain what’s wrong.
Because repetitive behavior is an inherent part of autism, experts admit it’s incredibly hard to differentiate between anxiety disorders and expected
Behavioral analyst and licensed counselor Kimberlee Flatt does research on repetitive behaviors and works as the adult intervention coordinator at the University of North Texas Kristin Farmer Autism Center. Flatt, who has a high-functioning 15-year-old with autism, explains that autism often looks like anxiety.
“We see little kids all the time, they’ll pick up a train and instead of playing with the toy the way it’s designed to be played with, they’ll just play with the wheels or isolate one part in a restrictive or repetitive way,” she says. “In those instances, it’s not necessarily related to anxiety. It’s just a selfstimulatory way to play with a toy.
“Other times we see obsessive rearranging of things or reordering things, and that’s also hard to tell because sometimes it’s just a preference or the way they choose to spend their downtime. It can be a fun hobby or a manifestation of
anxiety,” she says.
Flatt adds that a child’s verbal ability and genetics and whether their parents have anxiety traits can also increase the chances of exhibiting anxiety behaviors.
Anxiety in the ASD population looks different from person to person, but it can manifest in a wide range of behaviors, including obsessive repetition, aggression, lack of patience, constant worry and even depression; and it can
sometimes bring about physical symptoms, like headaches, tremors and muscle aches.
Diagnosing these behaviors is further complicated by communication difficulties, says Fort Worth psychologist Nesli Chandler, who conducts assessments for learning disabilities, including autism and anxiety. “The way we diagnose anxiety is through self-reported measures; we get feedback about
how the child is functioning,” she says. “But children with autism often have verbal delays, so they can’t communicate that to us. I think that’s the biggest obstacle that we face as clinicians.”
For that reason, it can go “unrecognized or misdiagnosed,” according to a 2009 study published in Research in Autism Spectrum Disorders.
So how do parents and, most important, experts tell the difference? The diagnostic criteria for autism include restrictive or repetitive behaviors, Chandler says. “That can be things they do with their bodies, or if they do the same thing over and over again, and the restrictive part is if they become obsessed with something, like become hyperfocused on baseball,” she says. “A lot of that can overlap with anxiety, so it’s hard to tease out.”
Flatt says she can usually spot anxiety in a child with autism if they become anxious or exhibit repetitive, obsessive behaviors at specific times or in specific places. Refusal and protest behaviors can also be early warning signs that anxiety is a factor. But “when [those behaviors are] constant or across all settings, it’s less likely to be indicative of anxiety,” and is probably just an autism behavior, she says.
Chandler says doctors look at diagnosis as a pathway to help patients. Is the anxiety so prevalent that it requires specific attention in addition to autism treatment? If so, that’s when a separate diagnosis of anxiety is needed.
Cameron Lorzadeh’s anxiety can get so bad that the 24-year-old acts out, throwing a tantrum or sometimes hitting himself. But his mother, Pam Lorzadeh, who lives in Frisco, says those problem behaviors didn’t get serious until Cameron was 19, the year his father (Lorzadeh’s husband) passed away.
“There was a lot going on,” she explains. “His dad went through a lot of medical issues at the end that Cameron had to be exposed to. When his dad
died, I was overwhelmed.”
Both Flatt and Evans say that prominent anxiety doesn’t always manifest in a child’s early years and that it can show up in the child’s teen years or even early 20s, triggered by hormonal changes associated with puberty, stressful
events or life changes. Those factors were at play in Cameron’s life—shortly after Cameron’s dad died, Lorzadeh’s family (her other son, 25-year-old Doran, has autism too) uprooted from Katy to Frisco, another life change.
It’s been trial and error to calm Cameron’s anxiety. A change in his routine can be devastating.
“I interrupted his routine one day for lunch, and he had this huge meltdown,” Lorzadeh says. “He started picking at his skin around that time. That was probably four years ago.”
(Dermatillomania, a disorder characterized by repetitive picking of one’s own skin, has close ties to both OCD, which is a form of anxiety, and autism.)
Lorzadeh realized that in trying to help her son become less dependent on routine, she was just contibuting to his anxiety. “The more I started trying to
change his routine to make him more flexible, the more anxious he would get,” she says.
He has other anxiety behaviors too. When the family eats out, he wants to eat exactly eight chicken nuggets, for instance, and he acts out when he can’t. Now that he lives in a group home, he gets very anxious about when he’ll get to visit his mother, Lorzadeh says. A calendar helps him keep track of how many days are left until he gets to go home.
The hardest part about Cameron’s anxiety? He’s on the lowfunctioning end of the spectrum, and he can’t communicate his anxieties. “He’ll get frustrated and anxious because people want him to communicate, but he can’t,” his mom says.
This isn’t uncommon. In children or adolescents on the lowfunctioning end of the spectrum, “we can’t always figure out what the triggers are,” Flatt says.
That can turn into a vicious cycle: A child’s comprehension and communication difficulties can fuel even more anxiety and worry, Flatt says.
That’s where experts can help.
Ease Their Worried Minds
Many children with autism use ABA, or applied behavior analysis, which can help improve social skills and generally ease autism behaviors, including
anxious behaviors like self-injury. But Chandler says people with autism and anxiety might also benefit from CBT, or cognitive behavioral therapy. “CBT is not indicated for people with autism, but it does help anxiety,” Chandler says. However, because CBT relies on talking through issues, the therapy is only ideal for people on the spectrum with strong verbal abilities.
Chandler says experts, even if they are not psychologists who use CBT, should be able to treat all symptoms of a child’s autism, including anxiety. And if you turn to a therapist who specializes in anxiety, they need to have autism experience too, Flatt says. “There are tons of counselors who treat anxiety across the board, but you definitely would have to find someone who has expertise in autism because there are differences in how you implement. [People on the spectrum] may need more visual support; they may not have
the verbal skills.”
While Ruiz’s son Daniel has never been diagnosed with anxiety, the family has worked with professionals who’ve offered treatment that seems to be working.
Ruiz has learned how to help her son Daniel cope with and prevent anxiety after years of trial and error. “You have to tell him exactly what’s happening and put everything on a calendar,” she says. “Sometimes [when we’re out], we go from one place to another, and you expect them to be OK with changes. But for them, it’s not what they want. It’s very hard to cope with change.”
Nonetheless, Ruiz says they’ve learned to manage her son’s anxiety triggers by keeping to a routine. On the other hand, sometimes it’s much harder to manage the repetitive, obsessive behaviors that characterize anxiety.
Right now, there’s no FDA-approved medication specifically designed to treat symptoms of autism. But anxiety medications like Abilify are often prescribed
for people on the spectrum who also have anxiety behaviors.
Pam Lorzadeh put Cameron on medication four years ago—first Depakote, a seizure medication that is used in the ASD population to help address
impulsive behavior, aggression and problems with language and social interaction, and later duloxetine and Abilify. The results? Inconclusive.
“I can’t tell you for sure if the medication is helping,” Lorzadeh says.
But there may be a more effective medication out there. In a 2016 study in which Evans (the Children’s Health neurologist) participated, researchers found that buspirone, another anxiety medication, reduced anxiety in some children with ASD. Buspirone works by increasing serotonin activity in the brain. “Children who have autism typically do not have sufficient serotonin in their brains for the first 10 years of life,” Evans says. “We know that serotonin is an important neurotransmitter that, in reducing anxiety, prompts young children to learn new things, especially language and social skills.” The study looked at the impact of buspirone on autistic behaviors, as well as social competence, repetitive behaviors, language, sensory dysfunction and anxiety, in children ages 2 through 6 with ASD.
However, experts, including Evans, say medication should be a last resort only if treatment programs don’t ease symptoms of anxiety and autism. Often,
therapy is enough.
And Flatt says early intervention is key to long-term success. “It’s easier to treat children than adults,” she says. “These aren’t traits that go away without treating them. There’s no less exposure.”
Given that anxiety is one of the most common traits researchers see in the ASD population, experts agree more research is needed on the connection between the two, including proven methods to diagnose and treat the comorbidity.
But Flatt says there are a few things parents can do: First, try to identify the root problem. If your child exhibits anxiety when using a public bathroom, try to figure out why. If your teen has anxiety over driving, what is it about the
experience of driving that fuels the worry? Second, implement a regular
schedule with predictable hours for eating and sleeping and a system your child can rely on, like Ruiz’s calendar. Creating an environment that’s not overly stimulating can also go a long way, Evans adds.
Another part is realizing that your child can’t manage anxiety or autism on their own or even just with one person’s help. “A big part of our job as parents is to teach them to build a support network,” Flatt says. “[Teach them] how to contact their doctors, reach out to people that aren’t just mom, talk to friends
and counselors at school. You’re teaching them to use this support network because no one manages it on their own.”
Lorzadeh says Cameron is doing much better these days. He recently moved from a group home in Fort Worth to a home in Little Elm, where his schedule
is much more routine and where he’s given the opportunity to be more independent.
“I don’t see him as anxious. I see him a little more relaxed and happy,” she says. “I hope the environmental change was good for him.”