I read with interest a recent study finding that young adults on the autism spectrum have less access to health care transition services than do other special needs populations. The study found that young people with ASD need better services in transitioning from a pediatrician to an adult doctor. Their health needs get much less attention in adulthood than in childhood. This caught my eye because we're navigating that transition now with Reilly.
I suspect other parents of ASD children share my frequent frustration with our health care system. When Reilly was a toddler, I heard about a pediatrician in our area with a reputation for working well with special needs children. I moved all three kids to that practice, with mixed results. It was a large, well-regarded practice, and although we had one primary doctor, it was next to impossible to get an appointment with her when one of the kids was sick. When we did get in to see her, she seemed hurried and frazzled and I never felt like we got enough of her time and attention.
Like most ASD children, Reilly had a host of “comorbidities” (what an awful word!). Frequent ear infections, strep infections, gastrointestinal issues, debilitating migraines, allergies, learning disabilities … What we really needed was a medical team, yet I had trouble keeping the attention of one doctor. Sadly, it is pretty much up to parents to search out the services and treatments for our children, with little or no guidance. At least, that was my experience. I often thought the right doctor, or treatment, or drug, or school, or therapist was out there—I just hadn't found it yet.
The truth, I think, is that what I needed for Reilly didn't exist. Maybe it still doesn't. And now he's an adult and refuses to go to the “little kid doctor.” I have recently switched to a new general practitioner myself, a woman that I like a lot. There is a young-ish male doctor in her practice who I thought might be a good fit for Reilly. I made an appointment during his winter break from school, two appointments, actually. The first was sort of a meet-and-greet session, for the doctor to get to know Reilly, and for Reilly to get a little more comfortable before the actual physical exam. I sat in, giving the doctor Reilly's somewhat complicated history. Reilly didn't engage in the process, and didn't like us talking about him as if he weren't there. Maybe I should have met with the doctor privately to go over the history. On the other hand, I thought it was time Reilly started to own his body, his health, his “disorder.” He needed to hear it all.
The physical was a few days later. Reilly went, grudgingly. Going to the doctor, twice, during his winter vacation definitely was not on his agenda. I sat in again, thinking that at some point the doctor would kick me out so he could talk to Reilly privately. He didn't, but maybe that's for another appointment. Again, Reilly remained passive, as if this didn't have much to do with him.
I liked the doctor. He's a believer in a holistic approach and stressed the importance of nutrition and nutritional supplements in treating many issues. He sent us home with magnesium capsules, and recommended B vitamins, Omega 3 and probiotics, for starters. He ordered blood tests and said he might have more recommendations when the results came back.
Reilly refused to take the handful of capsules we ended up with. He couldn't really explain why. He simply didn't want to. He's never been happy about taking vitamins, and I don't push—gotta pick my battles wisely! He's not very compliant about taking his medication at school and I realized he likely wouldn't be any better with vitamins. I explained that these supplements could help him feel better and more energetic; they could help his tics and his ability to pay attention in school.
I packaged each day's pills together in little bags, to make it easier for him. He said he would take them, mostly to get me off his back, I think. When we talk now, I always ask, “Are you taking your vitamins?” He gives me an exasperated “yes.” I have my doubts. In September, I sent him a 90-day supply of his tic medicine. Much of it came back home with him at Christmas. I could give his medication to the school nurse to dispense, but that makes him feel like a baby.
The issue, I suspect, is that taking his medicine, or even the vitamins, is a reminder to him that he isn't “normal.” I don't know how to fix that. And the bigger, more long-term problem, as the study suggests, is getting Reilly to own his health care—to learn to take care of himself, to eat well, take his medicine, get some exercise, go to the dentist and doctor regularly. I won't be here to coordinate all of that forever.
The University of Missouri study suggests that pediatricians begin to talk about the transition to adult services when their patients are about 12 years old. It also recommends that young ASD patients, their parents, pediatricians and adult primary care doctors meet to discuss the young person's needs when it is time to transition. Do busy doctors today really do this? Maybe it happens more often for kids who are more impaired than my son. Our pediatrician offered no help in making the move to an adult doctor. I did ask for a recommendation, and she scrawled a couple of names on her prescription pad on her way out the door.
The author of the study concludes that “most people with ASD are younger than age 18 right now, so in the next decade we're going to get an influx of adults with ASD. Our health care system is currently unprepared to treat their needs.”
I would agree.