We have made a gigantic discovery about Nate — both wonderful and frustrating at the same time. When Nate’s autism first started appearing (it is almost as if it wasn’t there and then, the next day, it was), he hit his head randomly. On the floor, the wall, the furniture — anything that was hard and, as we now know, would give him “feedback,” sensation in his body. Since his sensory system is dampened (he doesn’t feel pain like everyone else), he whacked his head hard on these items and it didn’t phase him a bit. For a long time, it felt as if he was always sporting a forehead bruise as an accessory. Through lots of work in therapy, in particular through the awesome assistance of Miss Katy, Nate’s occupational therapist, and his many Board Certified Behavior Analysts (BCBA), we curbed the behavior….or so we thought. It would go away but then would start showing up randomly, completely unexplained. And when it came back, it was with a vengeance. For weeks at a time, Nate couldn’t be left alone. I could only go to the bathroom when he was asleep or when therapists were in the house. It was bad. But then, it would go away again and we could breathe a tentative sigh of relief.
A few months ago, we realized that Nate started hitting his head when he had an ear infection — a nondescript irritation in his head region, not really something that he can “point” to the cause of. His ear infections are never accompanied by a fever or any other symptom — just headbanging. So, when he started to hit his head, we’d jump in the four-wheel-drive sleigh for a visit to Dr. Syd’s. Dodging the flailing arms and the fake crying, he’d peek in Nate’s ear and pass over a script for antibiotics. And I’d do a happy dance knowing that the self-injurious behavior was not behavioral but rather physically derived.
Right around Christmas time, the fierce headbanging came back and was accompanied by a new behavior: head punching. Nate would hit his own temples very hard so shielding him from hard surfaces became a moot point. So we drove to Dr. Syd’s, who took a peek in his ears and found…NOTHING. Crap. So we figured the headbanging would go away. (Please go away, please go away….) But it didn’t. It progressed in frequency so, the next week, I took Nate back to Dr. Syd’s and told them he must have an ear infection – go in his ear and find it. Again, nothing. In fact, without an ear infection, Nate was quite pleased to have his ears examined. He didn’t kick, scream, holler, flail. He just rested his head on my shoulder. He was fine.
But the headbanging continued — and started outside of our home. We were getting reports from school and therapy visits at school that it was happening there, too. Out of sheer and utter fear that the behavior was returning and spreading to new locations (he usually only exhibits this behavior in our home), we went back to the only place we knew: collecting data. Every time (and I do mean, every time) Nate hit his head, we had to write down the Antecedent (what happened before he did it), the Behavior (he hit his head), and the Consequence (how Nate’s caregiver managed the situation). It’s known as the ABC system and helps us figure out the true root of the behavior. For instance, when we used this system at the start of therapy, we learned that headbanging was Nate’s way of calling me or Chad. If he hit his head, we’d come running to stop him — but he just thought he got us to come visit. To fix that, we installed wireless doorbells on his baby gates, which he now rings if he needs an adult to come and get him. (Though we can always see him when we’ve stepped away….we can never go far away.)
So we’re taking data and the headbanging is getting worse and we’re beside ourselves. It’s the holiday time and we won’t see our BCBA for three weeks or our OT for two, and they’re the main line of defense in these situations. What to do? At the same time, we realize Nate’s got a diaper rash. He’s never really had one before but he’s got one now and it’s angry, which makes Nate angry when we change his diaper. He had one a few weeks prior that was so bad that Dr. Syd thought it was strep (on his butt!, which is apparently more common than I realized), but it wasn’t. That rash went away but here was another one. Diaper cream didn’t work; in fact, it made Nate cry tears. Nate was twisting so much to get away from us during diaper changes that the insides of his thighs were turning black and blue. And his tush was in so much duress that he couldn’t sleep through the night. So, we called Dr. Syd. Dr. Syd, what to do? His office said it was probably fungal (gross) and we should put lotrimin on it, the same stuff used for jock itch. And, if it isn’t markedly improved in 24 hours, call Dr. Syd for further instruction.
There was no generic lotrimin available at CVS so Chad purchased one ounce (which is hardly a dab of cream) for $22. We used it all in less than 24 hours, after which his tushy was slightly better but not “markedly improved.” It was New Year’s Eve, a Saturday. It was time to page Dr. Syd at home.
Dr. Syd prescribed Nystatin, drops to go in Nate’s soy milk or what have you, which should clear up the fungal (again, yuck) infection from the inside out. Guess what? It did. Guess what else? Headbanging stopped. Totally 100% went away. A few days later, we had a happy boy. It was like night and day; suddenly Nate was a wee ray of sunshine, blinding everyone with his smile. Chad and I cheered about getting our boy back
It seems clear now but was not clear in the moment: Nate has adapted headbanging to say, “I Don’t Feel Good.” And not just “my ear hurts” or “I stubbed my toe” but an overall everything-feels-like-crap. When you lack words and any other way to truly communicate, there’s no way to tell folks this except for, I guess, banging your head. When Nate hits his head, we come to him, we help him, we comfort him. He remains frustrated (really frustrated) that he can’t tell us anything beyond “Hey, get over here, people!” but at least he figured out the first step.
So, lessons learned? Self-injurious behavior as a hobby (knock on wood) seems to have been extinguished and now only exists as a way to communicate physical ailments that can’t be described by pointing (i.e. my tummy hurts). How to help him communicate this in a more healthy way? We’re getting a “I Don’t Feel Good” picture card. The problem is that we don’t quite know what to do after that (i.e. I can’t just go to the doctor’s every five minutes and say, “He gave me this card. Fix him.”) but at least it’s a first step.
nate is great 
Argh! and Phew! This all sounds very familiar. We’ve gone through many similar roller coaster rides of head banging, head slapping and even head punching with Noa, and it can be sooooo stressful and frustrating to try to figure out what is going on when you can’t get those verbal cues. Sign language has helped a lot, but when it’s pain or illness I think – as you point out – a dampened sense of pain may make it more difficult for Nate to figure it out too. Great detective work!