The Autism Care Network works to improve mental health among autistic youth

Research shows that people with autism are more likely to have other mental health conditions that affect their overall health and well-being. According to a 2019 study, as many as 28% of autistic people have ADHD, 20% have an anxiety disorder, 13% have a sleep disorder, 12% have a behavioral disorder, 11% have depression, 9% have OCD, 5% have bipolar disorder and 4% have schizophrenia.

Careful assessment and treatment of these mental health conditions is essential to quality care for people on the autism spectrum. This is especially true of autistic children and adolescents who may be struggling with the added stress and uncertainty of the pandemic.

In this Q&A, Dr. Eric M. Butter, Ph.D., co-chair of the Autism Care Network Steering Committee and Behavioral Sciences Committee, highlights how the Network is working to improve treatment for mental health issues among autistic youth.

Q: A recent report from the Surgeon General shows a mental health crisis among youth in the U.S. How is the Network working to improve mental health outcomes among autistic youth?

The Network is working to treat three common conditions often associated with autism: ADHD, anxiety and irritability. All three of these can exacerbate depression and suicidality among children and adolescents.

We are specifically working on improving the assessment of these conditions over time by understanding which measures are effective at evaluating the autistic population. We’ve learned that assessing anxiety is still very difficult among autistic children, particularly those with limited verbal skills. How can you tell something is creating anxiety or worry for a kid if they can’t talk about how they’re feeling? To overcome these challenges, we have a small team of researchers working to develop better anxiety assessments for non-verbal children.

At Nationwide Children’s Hospital, we’ve also incorporated suicide risk assessments for all of our patients, and we’ve set the age at which we screen for suicide risk younger for children with autism (age 8) than our non-ASD population (age 10). In addition, some Network sites are modifying and adapting their risk assessment processes so they’re more concrete, more visual and easier for children with autism to understand.

Q: What are you doing to innovate treatments for ADHD, anxiety and irritability?

The treatments available for these conditions need to be better understood, so we’re working hard to monitor the treatments that we are using across the Network and evaluate whether they are working or not. Every child that attends a Network site is enrolled in our learning registry where we track their symptoms over time, contributing to our clinical understanding of these treatments.

For example, we’ve known for a long time that we can treat irritability very well with medicines. Our network prescribers are using these medications and we’re monitoring how well they reduce irritability in kids. But we’ve learned that when we combine that approach with evidence-based behavioral interventions, we can expand the impact while reducing the unwanted side effects of certain medications.

In particular, we have seen value in using parent training as a behavioral intervention. Our network has adopted the RUBI parent training program to address anxiety, ADHD and irritability in autistic children and adolescents. We’ve worked hard to train more than 150 clinicians across the U.S. and Canada in 18 months in this intervention.

Q: How has the Network supported autistic youth throughout COVID-19?

We innovated significantly during the pandemic. Most of the Network sites were rapidly able to build telehealth and teleassessment models that allowed us to reliably diagnose kids through video conferencing. Most of the kids who were fortunate enough to get a diagnosis have moved on to treatment. The pandemic has only made early access to diagnosis and treatment harder for kids, so our ability to improve access to services through technology has been a huge success.