Susan's Blog

Friday, May 17, 2013

Nat’s first visit to an adult primary care physician

I took Nat to an adult primary care physician today — my own — for his annual checkup. We have loved our pediatrician for almost 20 years. She grew up with us.  I learned from her all about childcare and she learned from me about autism care.

I thought that because Nat is now 23, he should be going to a doctor for adults. My doctor is a lovely man whom Ned and I both see and have for years, and I knew he’d be deft at handling an appointment with Nat. Now I know that using the words “deft” and “handling” implies that Nat is difficult at the doctor’s. No, far from it. He is a very compliant patient. The problem is that he is too compliant. He always answers “yes.”

It was quite an awkward problem, explaining to the doctor right in front of Nat that sometimes Nat does not answer accurately. What I said was, “Nat, you sometimes have a hard time answering some questions,” to which he replied — of course — “yes.” But that interaction alone told my doctor a lot. God bless the man, I watched him look at Nat with each question, then subtly slide his eyes to me, and record my answer. His eyes were inquisitive, not at all frustrated or impatient. No judgements.

Why should I expect frustration or impatience or judgements with a medical professional? With anyone for that matter? Because I have lived on the planet for 50 years and I know that the speed of people and communication is so fast. There are so many things that need to get done in this world, that even the kindest of us sometimes must bulldoze the slower and struggling. Today, this did not happen, because my doctor is very respectful and because well, we were paying for his time, after all.

I realized, as I watched the doctor examine Nat, and figure out about him, that it is an incredibly hard thing to receive good medical care if you have a communication and cognitive deficit. You depend on the others to decipher, describe, and decode. The human body can reveal some of its mysteries, but certainly not all. You can’t shine a little penlight into the brain to check for bad headaches. You can’t see cancer in a stomach without a huge intrusive test.  You can’t detect pain in someone else’s joints. No one does MRIs at a routine check-up, but sometimes I wonder how can we not with guys like Nat? What I’m saying is not new to many autism parents, and autistics themselves, I would bet. The fact that we cannot know for certain how our developmentally delayed loved one is feeling is nothing short of torture. And what is it like for Nat himself?

I had prepared Nat in the usual way for this exam: “This will be a new doctor. But he will examine you just like Dr. R does. Listen to your heart. Take your blood pressure. Weigh you on the scale…” And smiley Nat was just as smiley as 18-month-old Nat was getting his MMR vaccine in 1991. I remember how the doctor said, “Oh, you’re still smiling at me!” after the shot was over.  (Sometimes, even though that infamous vaccine has been exonerated, this story still makes me a little sad. I will leave it to everyone else to interpret that.) Dr. L seemed particularly relieved to finally move to the plain old examining part of the appointment, rather than the Q and A about Nat’s health in general. But even here, Nat did not understand what was wanted of him. “Deep breaths,” the doctor said. “ho ho ho,” Nat kept saying. Perhaps that was what they do in yoga with him? Does he even take yoga? “Swallow,” the doctor said. Nat just kept mushing around his mouth. “Look straight ahead,” the doctor said. Nat would look very earnestly right at the doctor. D’oh!

Nat usually does better than this at exams but I realize that he was probably thrown off by the newness of the experience: this doctor, this office, etc. I felt a little sad about just how much comprehension was missing on both sides — Nat and the doctor’s. Because Dr. R, the pediatrician, has seen Nat grow up and improve in so many ways, somehow the exam always feels like a triumph, a cause for celebration. At the end of this one, I wanted to lie down. Not because anyone had failed, but because communication is just so tough for Nat, and yet so important.

But I am certain that this was a success, nevertheless. When I asked Dr. L if I could also bring Max into his (already full) practice, he said, without hesitation,”Oh, sure.” I assured him that Max was “easier,” and then felt very ashamed of myself for that. But what I meant was, no forms for Max, and pretty forthright conversation. No judgement. He then sat down with the 10-page sheath of forms the DDS requires him to fill out for Nat, and very graciously joked that we must be so bored waiting for him to sign all these. No, boredom was not what I was feeling.




I found this heart-wrenching as we are about to make the same transition with our son. While our son is more communicative than Nat, the same feelings and fears are already bubbling up inside me. Our son is well known and liked at our pediatric clinic, but he is becoming more and more out of place there. This saddens me greatly. I fear that the same doctor/patient rapport will never again be there. I hope I am wrong.

— added by Susan Miles on Friday, May 17, 2013 at 4:31 pm

Not knowing if one of my boys was feeling unwell has been my own personal hell at times. When they have those tears and you think “does your head hurt? your stomach? what???” – it just completely rips me up. And I totally hear you about the MMR – I have such strong memories of telling my pediatrician “yes, give them the flu shot”, when my boys were so young. It’s a little stab in my heart now. This posts reminds me a bit of another of your posts “Experience Breeds Ability” – which I have bookmarked on my computer. Hopefully, this was a good experience for Nat and future visits will feel more like triumphs.

— added by Suzette on Friday, May 17, 2013 at 5:31 pm

Something I am so not looking forward to. Our Ped is the best. Dh’s Dr is brisk, mine brushes my concerns off. Definitely, don’t want my non-verbal son going to either of them.

Do you find Nat answers “yes” regularly to medical questions? I think Russ does it because if he says “yes” then he can’t be feeling poorly. Most of the time I can get a proper yes/no response, it’s only when we ask if he’s sick we can’t.

— added by farmwifetwo on Friday, May 17, 2013 at 6:55 pm

Nat answers “yes” routinely to medical and most other questions.

— added by Susan Senator on Friday, May 17, 2013 at 6:59 pm

I find that doctors seem to often lack social and personal skills themselves, particularly when dealing with children. I think they should have a course added to their degrees on “bedside manners”!

— added by Drakon Tea on Monday, July 22, 2013 at 5:52 pm