Why I’m Glad Charlie Doesn’t Have to See a Doctor Too Much

I was sitting at the pool talking to another mother whose son is in Charlie’s classroom and the conversation turned to medical issues, and then to medication (Charlie takes Zoloft and Risperdal), and then to what doctor we take him to.

I could see my friend reaching for a pen and paper to note his name; then I said “he’s with Children’s Hospital of Philadelphia”—-we live in central New Jersey and, while it takes just over an hour to get to the doctor’s office, it is not exactly convenient. This doctor was the first—-and, I think more and more, is the only—-doctor that Jim and I have been able to establish a good rapport and understanding with (in part because he has personal experience raising special needs children). As the doctor himself said to Charlie at our last visit, “We go way back.”

Doctors’ appointments have never been easy for Charlie, or for us. All the waiting—in the waiting room, in the exam room—is a built-in difficulty. The necessary poking in the ears and with the stethoscope are not easy and have meant me holding onto a wriggling child; Charlie has gotten better with these as he has gotten older (we were finally able to take his blood pressure on the first try this year—-he always takes off the cuff—-and he also sat to have a splinter removed and to get a shot). Fortunately, Charlie is generally healthy, so, aside from regular check-ups, we do not find ourselves too often in the waiting room.

I was not surprised to read about a study by researchers from the University of Minnesota Medical School according to which autistic children do not receive the same quality of primary care as do other special needs children. As noted in Medical News Today:

Specifically, [Allison] Brachlow [M.D., a research fellow in the Department of Pediatrics] found that parents of children with autism were less likely to report their child’s care was family-centered, comprehensive, or coordinated. For example, parents of children with autism were less likely to report that their child’s primary care provider spent adequate time with them, offered understandable explanations, or discussed outside services, such as speech and occupational therapies. Furthermore, parents of children with autism were more likely to report difficulties obtaining subspecialty care, such as referrals to a gastroenterologist or other subspecialty doctor.

The study is published in the Archives of Pediatrics and Adolescent Medicine.

Feeling that a doctor spends “adequate time” with them, has “understandable explanations,” mentions “outside services”: These are things that are essential to families seeking answers to help a child who is not yet or newly diagnosed; for a child who (like my son) has little language and cannot talk about how his body feels. One hopes very much that the results of this study can be addressed for doctors-in-training and highlighted for doctors today—-and that there will be more doctors like Charlie’s neurologist whom Charlie has a good rapport with.