For Nat’s entire life I have worried about the fact that he cannot communicate well enough to tell me he is sick. Many autism parents face this and do not know what to do. These days I guess it is pretty common to take your child to a GI specialist and get a work up, because it does kind of seem like a lot of people in general are having gluten or other intolerances. We all know people with autism who are on some kind of special diet. Whether this is a scientifically proven solution or not to me the important thing is to get your child checked out as you would a non-autistic child. In other words, don’t assume it’s “just a behavior.”
I think, though, that I worry so much that Nat might be sick sometimes that I overlook the possibility that he is indeed (perhaps) stimming. It is so hard to get it right. Just yesterday around 5pm he started burping and burping; swallowing air and making himself burp. We all kept commenting on it, mostly reminding him to say, “excuse me.” At one point Max thought that Nat was just kind of making himself burp in a self-stimulatory way. We were all feeling that way. I don’t know who said it first — it may have been my mom — but it occurred to us that Nat was definitely uncomfortable.
I took him aside, into the kitchen, and I asked him if something hurt. I was anticipating the age-old Nat response, “Yes.” Even when it might not be true. But it might be true this time, and so I felt my heart sinking even while I was trying anyway. “Nat, where does it hurt?” He thumped his chest high up and said, “Froat.” So then I said, “Your throat?” to which he replied, “Yes.” Then I had to test his accuracy: “Your stomach?” “Yes.”
“Nat,” I said firmly, “Is it your throat or your stomach?”
“Your stomach or your throat?”
Ah! Great! It seemed like it was his throat/chest. “Maybe it’s indigestion,” offered my mom.
Yes! Heartburn always makes you want to burp to get rid of the pressure. Then I remembered that Max recently had had that for weeks and I took him to the doctor and he started taking Alka-Seltzer, then Prilosec or something like that and it went away. Max could tell me exactly how it felt, and when it was getting worse, and then better. Oh, what a relief it is.
But with Nat, it is a delicate operation of asking and re-asking questions; of even thinking up the right questions to begin with. I still wonder if indeed his stomach is involved. It is in the back of my mind to get him a GI workup with Tim Buie at some point soon, anyway. Just to make sure.
So I gave Nat the Prilosec and soon after he did stop burping! So I told him that he had indigestion and asked him to say it: Indigestion. I also told him that if he felt that again he should tell his staff. I named each staff person and kept saying, “Indigestion” and making him repeat it.
Today I was handing him over to John, our dear interim house manager, and I explained to John about the indigestion, and that it might return. I turned to Nat and asked him what it was called, and he said something that was kind of like “indigestion,” but pretty much indecipherable to anyone else. Ned had him say it correctly and then I let him go. I felt a little bit okay, though, because somehow I feel tonight like Nat made a connection, by experiencing the burping, having us take it seriously and figure it out — with him in that question-and-answer way. And then he took the Prilosec and we commented on how it went away. Today he remembered the word, kind of.
Maybe, just maybe he will be able to tell somebody next time, sometime, someday.