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Parent Input Builds Better Care for Children with Autism Spectrum Disorder

From Children’s Hospitals Today

child with autism receives care at chocChildren’s hospital emphasizes community outreach, multidisciplinary approach to caring for children with autism.

When CHOC Children’s in Orange, California, opened the doors to its new Thompson Autism Center last year, the goal was to expand and improve care for children with autism spectrum disorder (ASD) and related neurodevelopmental conditions in the southern California region. The center offers state-of-the-art facilities, program initiatives and a multidisciplinary team, but its most important asset may go beyond CHOC’s walls.

“The best ideas for individualized therapies have sometimes come from the parents—they’ve taught me some of the most amazing tactics they’ve developed to help their kids,” says J. Tom Megerian, M.D., pediatric neurologist and medical director of the Thompson Autism Center at CHOC. “Parents who come up with these ingenious ideas to reach their children are such a great resource for other parents—and an untapped resource we want to utilize more.”

Megerian and his team have made significant efforts to cultivate the human capital available within its community, including parent navigators—part-time paid positions for experienced parents of ASD patients.

Consolidating appointments benefits patients and their families

It begins with the Thompson Autism Center. It’s housed in a renovated medical office building near CHOC. The lead architect has an autistic son, so the design elements reflect the needs of ASD patients. The added space allows for comprehensive multidisciplinary clinical care for ASD patients—particularly useful in instances of common co-occurring conditions including epilepsy, sleep disorders, gastrointestinal issues and mental and behavioral health concerns.

According to Megerian, this helps parents consolidate multiple specialist appointments into a single visit—giving ASD patients a true medical home. “We really want to make it a ‘one-stop shop’ for parents,” Megerian says. “We want them to feel like they’ve got a place they can go and get help with every aspect of their child’s care.”

Helping primary care providers assume a more prominent role in autism care

Early diagnosis of ASD is critical to successful treatment, so Megerian says it’s vital to expand CHOC’s influence beyond just the patients it sees firsthand. An important piece of CHOC’s mission is to collaborate with primary care providers in recognizing ASD in young children.

To alleviate added burdens on well-visit schedules, the Thompson Center aims to offer training and telehealth support to primary care physicians to help diagnose children with ASD. Megerian estimates as many as a third of ASD cases could be diagnosed sooner in this way, easing the backlog of patients awaiting visits with a specialist and getting them into Applied Behavior Analysis (ABA) care sooner.

“We need to come up with scalable solutions, and we’re trying to build that kind of a program here with the community clinicians,” Megerian says. “We need to make it easier for them and give them the confidence to make the diagnosis when they can.”

In addition, CHOC assists ABA providers who care for kids diagnosed with ASD. Not only does the center have highly trained board-certified behavior analysts focused on working with children with challenging behaviors, they also offer consultation with current ABA providers to provide collaborative advice for kids whose improvement may have stalled.

Looking to the future

In conjunction with the Thompson Policy Institute at Chapman University, the center’s director of Families, Agencies and Schools Together (FAST), Elissa Kaustinen, has begun developing transition planning services at the Thompson Center. “From partnering with parents and schools to help ensure students with ASD are learning the skills they need to be successful adults, to helping adolescents prepare for higher education, vocational and life-skill learning opportunities, this program is designed to ensure that every individual can live up to their full potential,” Megerian says.

CHOC built the Thompson Autism Center with future expansion in mind, so the building—and the program—will be ready to meet the community’s evolving needs. ASD patients and their parents will not only be the primary beneficiaries but continue as key partners in its growth.

“They are the biggest resource we can bring to help other people,” Megerian says. “We’re really excited to have them as part of our program.”