From 2000 to 2010, autism diagnoses among American children doubled. A significant number of those individuals are now adults, but they have largely been left out of a health care system that focuses on pediatric autism. A 2012 study from Oregon Health & Science University found that adults with autism had “significantly worse” health care experiences than their counterparts without autism. They had “greater unmet health care needs,” used the emergency department more often and saw a doctor for preventive services less than non-autistic adults.
“They go from a pediatric setting where there’s a support structure built around them and doctors they’ve known for a long time, to an adult care setting where the support, structure and culture are different,” says Christopher Hanks, M.D., a clinical assistant professor and primary care physician at the Ohio State University Wexner Medical Center in Columbus.
Last April, with help from colleagues “at every level” of the hospital and funding from a local benefactor, Hanks launched a clinic specifically designed to provide primary care to autistic adults. The Center for Autism Services and Transition, or CAST, provides patients with primary and specialty care from physicians trained in treating autistic adults. It also offers counseling, dental care, nutrition and pharmacy services. And it trains medical residents in communicating with and treating autistic adults.
Braden Gertz, 24, is a high-functioning person with autism. He has a college degree, holds down a job as an education specialist with autistic kids, teaches swimming and does his own laundry in his own apartment. But his visit to CAST in July was the first time he’d seen a doctor in quite some time.
Worried about Gertz’s blood pressure, Hanks encouraged him to eat more fruits and vegetables and give up his favorite low-calorie frozen dinners that are high in sodium.
For high-functioning patients like Gertz, finding and transitioning to new doctors can be difficult. “Any 18-, 19- or 20-year-old, even someone without autism, is going to struggle to some extent in many settings with the process of medical care,” Hanks says. “Setting up appointments, refilling medications, going into a physician’s office and saying, ‘Here’s what’s wrong with me and here’s what I need.’ When you add in the component of autism with social anxiety, it can be incredibly overwhelming.”
For lower-functioning patients, talking face-to-face can cause severe, sometimes paralyzing, anxiety; so can sitting in the waiting room, or entering a building through the main entrance.
Gertz learned to bring his medical summary records to doctor visits so he can pull them out if he can’t remember something. “That’s the level we work on with him,” Hanks says, “whereas with others, it’s more basic: ‘Oh, wow, you’re living at home, sitting on a computer all day not doing anything. How do we find opportunities to get you out into the community and have social interaction again?’ ”
Many physicians struggle with how to communicate with autistic patients. Autistic patients “don’t catch the nuance of conversation,” Hanks says. “You need a very direct communication approach where you say, ‘I’m going to do this. I’m going to examine your ears now, and then I’m going to examine your throat’ — really guiding them through each step.” Jokes or sarcasm, “which physicians often use to make the situation more comfortable or diffuse some of the tension,” don’t go over well, he adds.
In September, CAST had 65 patients, with plans to expand to 200 by 2015. Some come through word of mouth, others from CAST’s close work with the children’s hospital to transition autistic patients who are aging out of pediatrics.
For the time being, the center doubles as Hanks’ primary care office, so autistic patients do end up encountering a waiting room. The hope someday is to make the physical space more accommodating.
On the other hand, Hanks says, “this is something that can be done in a regular office that doesn’t require thousands of dollars of special equipment. When we began, all we really had was the willingness to spend a little bit of effort and time.”