Susan's Blog

Wednesday, August 14, 2013

Heart Burn

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.




I can relate to your experience with Nat. My adult daughter with Autism struggles with indicating pain to me and even more with group home staff, accuracy is an issue as whell. My daughter who is not reliably verbal, has a Dynavox which we are using as an aid to help her indicate pain and communicate more clearly, loudly and more often. She has a hiatal hernia as well as acid reflux and takes Protonix as well. Her period discomfort is pretty intense. We do as you did with Nat, during her period we use her Dynavox to talk daily about what she is experiencing ie cramps, bloating, grumpy, need to rest, I need Tylenol. After 6 months of use, my daughter spontaneously verbally indicated: I need Tylenol to staff, and recently said I have cramps to me. The joy and relief I experienced from the fact that my daughter was starting to indicate pain was worth all the hard work we put in on practicing on the Dynavox.

Pain Communication Aid – Speaking of Speech:

— added by Rowena on Thursday, August 15, 2013 at 10:13 am

Always a worry. We too experience this with our young adult who is limited verbally. He once went months with undiagnosed strep. Although he made attempts through augmentative means. Repeated visits at his doctor’s failed to get answers and condescending attitudes were prevalent when I asked for further testing and refused to let it go. We had to go on to a major hospital and other specialists to get appropriate treatment. His primary is supportive now but appropriate care has always been a challenging course with parents having to interpret behavior or “off days” and draw on knowledge of their children etc. it’s quite scary to think of them without that parent or trusted knowlegeable adult looking out for them. We now advocate for our son’s communication system to train on expressing feelings and pain curriculum. .. ongoing training is a must, as well as taking time to listen….and hopefully next time, sometime , someday.

— added by Paula on Friday, August 16, 2013 at 11:40 pm

We struggle with this with Charlie, too. He has been on prevacid since he was 6. We also have a hard time pinning down what’s wrong with him. It’s hard to diagnose when he is very agreeable and tends to tell us what we want to hear.

— added by Mom on Monday, August 19, 2013 at 9:37 am

Justin is almost completely non-verbal, so we play a lot of “guess what’s wrong”. We’re working on having him pinpoint body parts with his iPad, hoping one day that translates into his ability to tell us what’s wrong. Fingers crossed…

— added by kim mccafferty on Tuesday, August 20, 2013 at 11:08 am

Just wanted to thank you for your book-Making Peace with Autism. I have a 3yr old diagnosed in May with autism. I have read numerous book on autism since her diagnosis but your book has impacted me the most. I could see Megan throughout your book as you wrote about Nat. Megan is a tall slender beautiful blond blue eyed little girl. It took my husband, a physician and myself a RN over of year of saying Megan is in her own world before we had her tested. Megan is nonverbal, throws everything-I could see her throwing beanie babies over a balcony. She tears paper. She is physically coordinated. she loves to do somersaults, flip… I couldn’t help but see Megan as I read this book I know you wrote this book some time ago but it is very real to me today. I would love to tell you more about Megan. We have just started our journey with an autistic child. Thank you for sharing your story of Nat.

— added by Brenda on Tuesday, August 20, 2013 at 10:02 pm