Pediatricians get virtual expert help on how to care for children with autism

From St. Louis Post-Dispatch, May 14, 2015

Mounting research shows intervening early can improve outcomes of children with autism, yet in Missouri and across the country, the wait to see physicians specializing in autism can be six months to a year.

To alleviate this burden on specialists and families, the University of Missouri has created a way to share the expertise of specialists with primary care providers like pediatricians and nurse practitioners through bimonthly virtual training sessions.

The training gives general practitioners tools to manage symptoms while patients are on waiting lists and aims to give the doctors confidence in treating typical medical issues in children with autism.

“We have to come up with different ways to alleviate the bottleneck and get kids help before they waste an entire year,” said Kristin Sohl, medical director for the university’s Thompson Center for Autism and Neurodevelopmental Disorders. “We can actually create a bigger system to take care of these children.”

Autism Spectrum Disorder is a group of developmental disabilities that cause mild to severe social, communication and behavioral challenges. Federal statistics show that 1 in 68 children in the U.S. are on the autism spectrum, a 30 percent increase since 2012. Most are diagnosed after age 4, though the disorder can be diagnosed as early as age 2.

Pediatricians are often the first to hear parents’ concerns, yet they spend less than a month of their residency learning about developmental disorders such as autism, Sohl said. Family doctors — the only doctor in many rural areas — spend even less time. Too often, she added, primary care providers refer straight-forward medical issues to specialists because they lack confidence in caring for children with autism. That, in turn, also increases waiting times.

Sohl leads a team of experts to train general practitioners across the state through interactive video conferencing.

During two-hour sessions held twice a month, physicians can discuss their patient cases with an expert panel and one another. The panel includes a child psychiatrist, psychologist, social worker, dietitian and a parent of a child with autism.

Participants also receive training in many common issues among children with autism such as sleep problems, constipation, poor diet and side effects of behavioral medications.

“Not every child with autism will present the same or have the same problems. Each child brings us unique challenges,” said Dr. Sandy McKay, a pediatrician at Mercy Children’s Hospital St. Louis who is participating in the training. “It gives me the opportunity to reach out to a group of providers to find out the best way of meeting patients’ needs.”

McKay knows it can take months before a patient she suspects of having autism to be evaluated and diagnosed by a specialist, but she can prescribe therapies to address concerns in the meantime.

“The last thing I want to see for one of my patients is that we could’ve been doing six months of speech therapy before they saw a specialist,” she said.

The virtual training is called ECHO Autism and is based on the successful ECHO (Extension for Community Healthcare Outcomes) model that began at the University of New Mexico as a way for specialists to share their expertise to doctors across the state in caring or patients with Hepatitis C. Now, several ECHO programs exist in areas such as addiction, HIV/AIDS, epilepsy and chronic pain. The Missouri-led ECHO is the first to focus on autism.

“When I found out about ECHO, I immediately thought of autism,” Sohl said. “The system is currently designed for primary care doctors to recognize the problem and then refer to an academic medical center.”

Yet, at the Thomspon Center, she said, 350 patients are on the waiting list for a diagnostic evaluation. Families in rural areas travel as far as four hours one way for appointments, which means missing work and school. Medicaid, the public health insurance program for the poor, must cover the travel costs.

“One of the things that is most powerful is that you are moving knowledge rather than moving patients,” Sohl said. “ECHO moves specialists’ knowledge to them in their home community, and that is a cool way to think about it.”

The free bimonthly sessions began in March and will continue as long as funding is available, with surveys done every six months to measure effectiveness. Funding is provided by the state Medicaid program and Autism Speaks’ Autism Treatment Network, a collaboration of 14 autism specialty centers across the country, which includes the Thompson Center.

McKay said the training has helped her better understand the social and emotional needs of the parents of her patients, and learn more about other helpful services in the community.

She said, “When a family is in my office, they need help now; that’s why they are there.”