It's time: MUSC leaders push for autism-friendly health care

When 22-year-old Michael Jauch heard that his father, Edward Jauch, M.D., was creating an autism-friendly room in the adult emergency department at the Medical University of South Carolina, he got busy making a list of suggestions. He read his ideas aloud while sitting in the room’s comfy reclining chair.

“Dinosaur books, Disney books, train books, marine animal books, African animal books,” Michael said. “DVDs - to name a few, I’d put in ‘Finding Nemo,’ ‘Minions,’ Disney movies like ‘Snow White and the Seven Dwarfs,’ ‘Dumbo.’”

He’s in a good position to know. Michael Jauch is among the estimated 1 in every 68 people in the U.S. with autism spectrum disorders, which can cause problems with social interaction, verbal and nonverbal communication issues and repetitive behaviors. 

People on the autism spectrum are increasingly showing up in emergency departments - a recent report in theJournal of Autism and Developmental Disorders found the rate doubled between 2006 and 2011. Some need their medications adjusted to help manage their behavior. Others have seizures and gastrointestinal problems that can be a part of autism. They also deal with health crises that can affect anybody, such as appendicitis. Almost all find emergency departments, with their bustle and bright lights, overwhelming.

Hospital leaders are taking notice. At MUSC, members of the Department of Pediatrics are developing a program called Autism Aware Healthcare to help health care providers across the country do a better job of treating patients on the autism spectrum.

The new autism-friendly room in the adult emergency department is already open. Jauch and Jane Charles, M.D., were the perfect team to design it. Jauch is not only the father of a young man on the autism spectrum, he also directs the Division of Emergency Medicine and routinely sees how difficult being in the emergency department can be for patients with autism spectrum disorders. Charles is a faculty member in the Division of Developmental Behavioral Pediatrics and a nationally known researcher and expert on autism.

“Ninety percent of the time, they’re here because of outbursts or behavioral management challenges they have,” Jauch said. “All of a sudden, mom or dad or school says, ‘They’re aggressive toward us. They hit mom.’ That’s what we had with a patient last weekend. So they’ll bring them in here. Where else do you go? Take them to the ED so they can be evaluated.”

But the ED itself can cause problems for people with autism spectrum disorders who have sensory problems. The autism-friendly room at MUSC addresses that. “The goals were to get people away from the noisy environment and the ambulance bay because of the sensory overload they would experience,” Jauch said.

The room is in a relatively quiet part of the emergency department, a new area called the D Pod. In addition to the reclining chair, the room has a light dimmer switch, a thermostat and a TV to make patients as comfortable as possible. There’s also a cover to protect the medical equipment built into the room if a patient is having an emotional outburst.  

Jauch said the room’s sensory cart, filled with everything from headphones to books to art supplies, will help as well. “They typically have something that comforts them. Our goal when we encounter each one of them is to say, ‘What’s your child’s thing that comforts them?’ Oftentimes they’re very consistent thematically. Trains, elephants, specific music, things like that.”

He’s glad that leaders at MUSC see the importance of autism-friendly health care for patients throughout their lives. “There’s a fair amount of pediatric resources for people on the spectrum, but once you transition to adulthood, who’s their doctor?” Jauch said. The sensory room was an expense for the hospital but one that leaders said they were glad to take on.

“There aren’t many internal medicine doctors who have been specifically trained on the autism spectrum, partly because it’s relatively recent that we’ve come to appreciate the magnitude of the problem," Jauch said. "We haven’t created the necessary health care resources for the adult autism community.”

That’s changing at MUSC. In addition to the autism-friendly room and the Autism Aware Healthcare program, it has an epilepsy clinic for adults with autism spectrum disorders and Project Rex, a treatment program for young adults on the autism spectrum.

There's also a push to educate doctors and nurses at MUSC and other health care facilities about autism. A recent Pediatric Grand Rounds at MUSC, which is a form of continuing medical education, featured a discussion called "Autism spectrum disorders surveillance: Key findings and trends."

The overall idea is to raise awareness and create systems that will help people with autism spectrum disorders navigate the world, no matter how young or old they are. Department of Pediatrics Chairwoman Rita Ryan, M.D., one of the leaders of the Autism Aware Healthcare effort, said it’s important for MUSC to be a leader in this area.

“It’s the right thing to do for our patients and our community,” Ryan said.

Edward and Michael Jauch couldn’t agree more. They know Michael, who recently graduated from Wando High School in the top third of his class and has taken some college classes, will still need help throughout his life. 

“Michael is big, 6 feet 1 inch tall and 265 pounds, and it is a challenge to get him to exercise as much as he should," Edward said. "Sooner or later, he’s going to be at risk for diabetes, hypertension and hyperlipidemia, so he’ll need to get blood drawn to check his cholesterol, glucose, etc., when he’s relatively young." His son will also need the understanding of dentists, eye doctors and all the other specialists people need to see as they age.

For now, the Emergency Department’s sensory room is a good first step, Edward said. Michael agreed, even though he thinks it still needs some work – like getting the DVD player installed and an iPad in place. 

“It needs a Wii U game,” Michael said. “Video games with Super Mario 3 Worlds. You have to make sure videos are G to PG.”

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Autism Aware Healthcare goals

This program, in development at MUSC, will ultimately provide a curriculum and then certification of a health care facility as "Autism Aware," showing that it has completed the steps necessary for improving care for people with autism spectrum disorders. Among other things, it will encourage health care providers to:

• Identify people with special needs and make a note in their records, including what makes them most comfortable
• Help caregivers understand that it's relatively easy and important to set up legal guardianship so they can get medical information about adult children 
• Create spaces that aren’t overstimulating to people with sensory issues
• Use communication boards to help patients express their thoughts when needed
• Set up protocols for helping caregivers understand what may happen during medical treatment, including the use of medication and restraints
• Educate staff so fewer patients with autism spectrum disorders are mislabeled as psychiatric cases
• Help patients with autism spectrum disorders and their families transition from pediatric to adult care

For more information about or to support Autism Aware Healthcare, contact Dr. Jane Charles at charlesj@musc.edu.