Dr. Gary Stobbe, MD, is an associate professor of Neurology and Psychiatry and Behavioral Sciences at the Neurology Clinic and director of the Adult Autism Clinic at UW Medical Center and the UW Medicine Multiple Sclerosis Center. He also directs Adult Transition Services at Seattle Children’s Autism Center.
"What worked was my willingness to look beyond behavior, to really understand people, and understand what’s underneath..." - Dr. Stobbe on how he empowers and pushes his patients
1. What sparked your interest in working with disabled individuals, specifically autistic individuals?
I’ve always wanted to go into neurology, which stemmed from interest in biology of human behavior. l was always very interested in the biological basis of behavior. My UCLA neurology residency was very steeped in that. During residency, I met some people in the realm of autism. When I had gotten into private practice I felt unsatisfied... I was very interested in healthcare delivery systems, equity and access to healthcare. Both drew my interest in how autism is also interesting from a science perspective. Also my interest in need and fulfilling this need drew me to the field...
2. How do you approach your work with intellectually disabled/developmentally disabled patients
What worked was my willingness to look beyond behavior, to really understand people, and understand what’s underneath...In the ICU when you do evaluations of people under coma you don’t actually know how much are they aware of at the time, don’t ever assume that they aren’t aware. How can you know their internal state? Yet you discover that some of these individuals are in there. With [autistic] patients, if you take the approach that this child is able to exhibit age appropriate behaviors, then you can see those strengths emerge from underneath the surface. Parents always say “my child has never done that before!” When we asked for feedback from adult self advocates, “what would you recommend to parents, teachers, and clinicians knowing what you know now?” They wish we wouldn’t focus so much on the negatives, which happens in the clinic during clinical exams... Instead, we have to highlight the positive, what are their strengths, what do are they doing well. Teaching self advocacy skills is very important. Even though it’s always easier to tie their shoe lace than to have them tie it themselves, The sooner we teach them how to advocate for themselves, the sooner they can learn.
3. Why do you think there are so many fewer support systems for adult care than child care in the realm of disabilities and how do we close this gap?
The numbers are getting larger, most of the supports are community based like school and community programs. School is an entitlement so children have access as needed, but public schools only go up to age 21. I would be an advocate for public entitlements for post secondary education so institutions could serve across the spectrum of all humans. Intellectually disabled people would be able to continue their education and gain employment opportunities. There is good evidence for improvement in symptoms and output. The question is how do we go and prove these things that are costly upfront as investments such that if you invest in these institutional systems of support you improve the quality of life of the individual and population health. There’s also not enough opportunities for [provider] training, there’s not a lot of opportunities to work with adults because there’s not enough funding for these people..not enough providers do this type of work.
4. How can we increase disability visibility amongst medical students and create institutional systems where disability is talked about?
I saw a really cool program in Tulane in their culinary arts program which is part of their med school. These medical students do classes with just your average person, like a bus driver or a line cook. It’s a great opportunity for them to learn to be culturally sensitive. I’ve thought about our Alyssa Burnett program which offers lifelong learning for adults with DD and having medical students serving as peer mentors… providing those sorts of opportunities would be really helpful for our medical students and having these conversations early.