Patient, advocate helps launch autism awareness campaign

April is Autism Awareness Month and there are a large number of patients treated at Michigan Medicine who have been diagnosed with autism spectrum disorder — a neurodevelopmental condition that delays or reverses development. Currently, it affects one in 68 children and is the fastest-growing developmental disability in the U.S.

While there are resources and programs at Michigan Medicine to help children with the disorder, including the immersive STEPS program, patients with autism often find the transition to adulthood to be challenging.

Chloe Rothschild is one such patient. Rothschild — who has autism and currently serves as a patient advisor for the Office of Patient Experience (OPE) — had been both a pediatric and adult patient at Michigan Medicine for several years when she was brought to the Mott Emergency Department in 2015 due to a medication reaction.

“I was taken through triage at Mott and the nurse sent us back out to the waiting room, which was empty,” Rothschild remembered. “I started calming down, looking at toy panels and the TV. Then a staff member came and told us that we were going to the adult ER because I was too old to be seen at Mott. I didn’t understand and started screaming and crying. The adult ER was full, which led to an experience that seemed overwhelming.”

Ann Oldendorf, M.D., treated Rothschild in her adult urology clinic until recently retiring. She reached out to OPE shortly after the ER visit to figure out how the office could help providers offer more compassionate care to adults with autism.

Members of the multidisciplinary team. Back row, L-R: Susan Rothschild, Maureen Muysenberg, Melissa Cunningham. Front, L-R: Chloe Rothschild, Ann Oldendorf, M.D.

A multidisciplinary project team was pulled together that included Oldendorf, Rothschild and her mother, security staff members Maureen Muysenberg and Nikki Greet, and others from OPE and across the organization.

The team’s primary goal was to ensure that all Michigan Medicine staff members were aware of the resources available for patients with sensory disorders, including iPads, DVD players, sensory toys and therapy dogs. A secondary goal was to improve interventions between security officers and patients on the spectrum.

“When someone struggles with interoception [processing sensory input like feeling hunger or pain] like I do, describing how I feel and where something hurts can be very difficult,” said Rothschild. “People with autism experience things differently than other people do. Things other people might not notice can seem threatening or even scary.”

Educating faculty and staff

When the team formed, Muysenberg and Greet had already developed an autism awareness presentation and sensory kit and were looking for ways to give their presentation to more units and clinics. As part of that effort, the team created a staff education video featuring Rothschild (check out the video above!).

While the team has found success making presentations across the medical school and health system, it is still looking to provide more sensory kits along with identifying, educating and supporting staff members who can serve as “sensory disorder champions” in adult service areas.

“I’m on a mission to help educate medical professionals so that they can help individuals like me who have autism get better care across their entire lifespan,” said Rothschild.

Helping patients with their needs

Want to make sure you’re providing the best care possible to patients with autism? Here are some steps you can take, no matter your role:

• Those on the spectrum rely on predictability, so plan ahead and keep things as routine as possible.

• Learn as much about the patient as possible. Team up with a caregiver/family member — they often know as much about the patient as anyone.

• Take the patient to a private room as soon as possible, away from a busy waiting area.

• Use simple instructions.

• Utilize familiar personnel whenever possible. If patients are comfortable with a staff member, the visit is often more successful.

• Don’t touch patients unless necessary, minimize bright lighting, noise, etc. — all of these can lead to sensory overload.

For more information or to request an autism awareness presentation or sensory kit in your area, email Muysenberg at maukelly@umich.edu.

Thank you for playing your part in ensuring everyone at Michigan Medicine feels comfortable and cared for!