Is it autism? Mental illness? Both? How to navigate double diagnosis
Is this autism? Is this anxiety? ADHD? Depression? A behavioral disorder?
For parents of kids with autism, often the answer in day-to-day life is a combination of those things.
Recent studies show a strong link between autism and a mental health condition.
Last year, the University of British Columbia's department of psychology and the AJ Drexel Autism Institute at Drexel University published a study of more than 42,000 caregivers of children. It found that 77.7% of children with autism also had a mental health condition and 49.1% had two or more. The most common type was behavior or conduct problems, 60.8%; followed by attention-deficit/hyperactivity disorder, 48.4%; anxiety, 39.5%; and depression 15.7%.
By comparison, that same study found that only 14.1% of children without an autism diagnosis had a mental health condition.
The prevalence of mental health disorders in children with autism increased as they got older, with 44.8% of preschoolers (ages 3-5) with autism having one mental health condition, but 85% of adolescents (ages 12-17) with autism having a mental health condition.
Additional studies back up these findings, including a study this year from Denmark that found a three times higher rate of a suicide attempt or death by suicide in people with autism.
Why would this be? We don't really know, said Rebecca Farrell, program coordinator with National Alliance on Mental Illness Central Texas.
"Social isolation can contribute to depression and anxiety," she said, and that might be on the rise with the pandemic as more people were isolated and as autism services were delivered virtually. People with autism often have difficulty connecting or attaching to others and can become socially isolated.
COVID-19 treatment:Autism center moves to telemedicine during the pandemic
With the return to in-person school and the change in daily structure, parents might notice a rise in behavioral symptoms that they didn't see last year.
Some of the symptoms people are experiencing might have been attributed to autism previously, but as we know more about mental health and as the mental health condition becomes more prominent, it's an added layer, said Claire Schutte, a clinical psychologist and certified behavior analyst with Action Behavior Centers.
Schutte is not surprised by the studies that have found a link between autism and mental health disorders and that the likelihood increases with age.
"I've seen it in individuals I've worked with," she said.
She mostly sees attention disorders, anxiety and depression, she said, and she believes often as kids with autism get older they also see their differences. It's like: "This is really hard. I want to make friends, but I'm struggling," she said. That can influence depressive symptoms or social anxiety, she said.
In most kids with both autism and a mental health condition, the autism diagnosis comes first. But sometimes kids are diagnosed with ADHD or anxiety, and because they are considered high functioning, the autism gets missed until later.
How can parents tell whether a behavior is autism or something else?
"There's a ton of overlap," Schutte said, and that is why it has often been hard to recognize that there is more than autism happening. Some of the anxiety, obsessive-compulsive disorder or ADHD symptoms can be seen in autism, but it's the degree of the symptoms and how much of a disturbance the symptoms are causing in daily lives, she said. "It's beyond what we see in autism," she said.
Schutte said it's about noticing anything out of the norm or something new that develops. Clear signs of mood changes should be a red flag to parents, she said.
Parents can start with some of the professionals already in their orbit, such as a pediatrician, a special education teacher or a school counselor to help get a clearer diagnosis. Sometimes a behavior therapist a child is already seeing can help with some of the symptoms, such as obsessive-compulsive behaviors or attention disorders, but often a new specialist such as a psychologist or a psychiatrist needs to be added.
Looking for answers:Austin family's mystery turns into diagnosis, walk to treat Angelman syndrome
Look for professionals who also have a specialty in treating people with autism. Increasingly, Schutte said, there are psychiatrists and psychologists who are trained in working with people with autism, and that didn't used to be the case.
NAMI Central Texas can help people find resources, including specialists who know how to work with people with autism and specifically with people who are nonverbal. Their tools could be things such as using pictures to communicate or giving directions one step at a time, said Quevarra Moten, deputy executive director of NAMI Central Texas.
NAMI Central Texas also can help provide caregiver resources such as support classes for understanding mental illness.
"We've had an influx of parents that have children with autism, and they don't know the resources are for them, too," Moten said.