Something was wrong with Nat.
I got the call about my 25-year-old severely autistic son just as I was parking, about to meet a friend for coffee. It was from Richard, the day program director. Like many adults with significant disabilities, Nat spends his weekdays at a day program, an organization that helps his employer so that he can work — he does carriage return at a local Shaw’s. When Nat is not working at Shaw’s, he is out in the community with support staff and others individuals in his program, volunteering at Meals on Wheels and various activities.
Richard got right to it: “I don’t know how to tell you this. But Nat came in with puffy eyes and was really not himself, you know the way he’s been lately.”
A poisonous feeling started flooding my throat. Oh, I knew.
Richard continued: “He was hanging his head, quiet, not talking to himself, not walking around. I asked him some questions — he started crying a little.”
Nat always talks to himself and paces. Although he can talk a little, for the most part you have to really know him to figure out what he’s trying to say. He is very severely impacted by autism and some developmental delays.
“What questions?” I broke in, wanting to cry myself. But I already kind of knew.
Richard had asked Nat questions about whether someone had been touching him, hurting him.
At the time, this was all we could imagine because he had seemed healthy. He had adjusted well to living in an apartment with his roommate, John.
Nevertheless, Nat had not been himself for a while. He’d been so still. So quiet. And where did I go with that? The worst place possible: worrying that he’d been abused. This is not a frivolous fear, either. I know cases of such abuse. Moreover, the Centers for Disease Control and Prevention reports that “1 in 6 boys are sexually abused at one time or another, and the numbers for individuals with disabilities are even higher.”
Richard told me that he’d asked Nat if something hurt. Nat had gestured to his abdomen, but Richard thought Nat’s hands were pointing kind of close to his crotch. Richard persisted: “Did someone hurt you?” and Nat answered, “Yes.”
One part of my brain just froze. I tried to grab hold of my thoughts, but they had formed a dense cloud in my head. I needed to get off the phone. I needed to think. I needed to figure this out.
I called Ned, my husband, expecting him to be Mr. Rational, as always — to organize my thoughts, tell me not to worry. Bu, for once, he was just as hesitant as I was. “What are we supposed to do?” he kept asking.
“I don’t know,” I kept answering. “There’s going to be an investigation of everyone Nat spends time with. I don’t know,” I said, book-ending my uncertainty.
I drove home, but I didn’t get out of the car. I just sat there, in my driveway, screaming, “Oh, Nat!” and then, “I’m sorry, Nat. No. No way. God, please. No.” My throat got raw. I drove to the day program to talk to Richard, and pick up Nat.
I didn’t get out the car right away; instead, I called Nat’s pediatrician. I love his doctor. She’s a Jewish mother, just like me. She’s known Nat forever — that’s why he still goes to her. The idea of starting over with some adult physician exhausts me.
How would a new doctor understand Nat’s ways of communicating, without a lot of intervention and instruction from me? And how up-to-date would a general internist be about severe autism in adulthood, when only recently have people like Nat been on the medical radar screen? Most of that knowledge centers around autistic children. One 2012 study found that, for example, “The majority of all physician respondents … reported having a lack of training in the care of adults with [autism spectrum disorder].” The same study showed that physicians feel that “54.7 percent of their patients with ASD could not understand and follow medical recommendations.”
Our pediatrician sounded like she was crying when I told her. She asked to be kept in the loop. But what was the loop? Right now it was all a knot.
When I finally got hold of Nat, he was very warm. The heat from his skin was like a heavy blanket. His eyes were not the usual crystal blue. They were a hot Bermudan blue. He was sick. No one had realized this, though. I drove him home.
I asked him in different ways if he was happy, if he was hurt. I asked him what hurt. Where did it hurt, who’d hurt him? But of course it was so hard to get any reliable information. The conversation went like this:
“Does your head hurt?”
“Do your feet hurt?”
Sigh. True? Or just the default answer? “Nat: does the chair hurt?”
“Yes.” Talking is truly the most difficult thing you can ask of Nat.
Not once did I get an answer that was anything like a confirmation of abuse. Finally I asked him about if anyone touched his private parts.
No. Two letters. So definite. So rare with Nat. But with Nat, unlike his “yes,” “no” means no.
A cool wave of relief swept over me. My thoughts cleared for the first time that day: Nat was sick. I gave him Tylenol. He went to sit in the big yellow armchair, in the sunny bay window. I checked on him, while sending around an email update to his whole team, [explaining] that I believed he was actually sick, and not sad. Not hurt.
And then, I thought I saw the flash of teeth. Then, his voice bubbled up: a small curve of laughter. Laughter. Oh God, how beautiful.
But the fever still bothered me. And the dark, silent mood he’d been in that had led Richard to such a dire conclusion. I realized that he was indeed gesturing at his abdomen. The right side. Wait, where is the appendix? Another call to the doctor, and there we were, in the emergency room. We told the doctors there about everything, even the allegation of abuse. They examined Nat thoroughly. At one point Nat giggled at the doctor’s palpation.
He was no longer quiet or still. Whatever it was, it had passed. By now, my husband and I were feeling a bit like overly anxious, newbie parents. But of course we had to check things out — Nat was practically nonverbal. I will always be that over-anxious mother.
An ultrasound and many blood tests later, Nat was deemed fine but gassy. Exhausted, we took Nat home. Our best guess? Some kind of benign virus. But will we ever know for sure? Until medical schools and hospitals learn the specifics of caring for autistic adults (with so many having communication, sensory and behavioral challenges) probably not. And Nat — and the 1 in 45 people like him — will have to live with the consequences of that uncertainty.
This piece originally appeared in WBUR’s blog CommonHealth. It is an excerpt taken with permission from Susan Senator’s book, “Autism Adulthood: Strategies and Insights for a Fulfilling Life,” Skyhorse Publishing, 2016.