(Dis)ability Is in the Eye of the Beholder

I thought about the pity people show toward Bud and his limitations, and I thought about how little Bud pities himself. I wondered who gets to decide what's considered a limitation and what's considered a strength.
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My son Bud and I took a road trip a few weeks ago. Bud is fourteen and has autism and he was doing what he often does on long car rides -- reciting, verbatim and from memory, scripts from television programs that he hasn't seen in years. He wasn't quoting; he was scripting -- full-length, start-to-finish scripts, in which he plays all the roles, mimics all the voices, and recreates all the sound effects.

As he often does, he tried to engage me in his scripts: "What did he say next, Mom?" he'd quiz. "And then what happened?" he'd ask.

When I couldn't answer, which, admittedly, was most of the time, he'd patiently feed me the line, prompt me until I got it right, and then take it from the top so I could practice my newly acquired skill.

Of course, I was far less patient than my son. I flubbed my lines. I struggled to remember what he'd told me, but I failed. I got things backwards, I left things out, and I used all the wrong inflections. Within minutes, I was frustrated and angry and ready to be done.

"Bud, I can't do it," I told him. "I know you want me to, but I can't."

"Just give it a try," he coaxed. "Just re-think it!"

"I can't, Bud," I said. "My brain just doesn't work that way."

"Aw, come on, Mom," he said. "Picture it in your mind. Just picture the words and read them."

"Listen, Bud," I said. "Remember how we said that your brain has autism, and that makes some things easy for you and some things hard?"

"Yes," he said.

"Well, remembering the words to shows is one of the things that is really easy for your brain because you have autism. But I don't have autism, so my brain doesn't know how to do that. No matter how hard I try, I just can't remember all those words."

Bud was quiet for a minute. "You can't?" he asked.

"No," I said. "I can't."

We continued to ride in silence. Then Bud smiled and offered brightly, "I know! I'll pass you some autism!" He rubbed his hand against his forehead, pulled it away with a flourish, then leaned over and rubbed my forehead. "There!" he announced.

"It doesn't work that way, Bud," I said.

"We can put some autism in your brain," he said.

"We can't, Bud," I said. "You have autism and I don't. That's just how it is. You can't give it away and I can't get it."
Bud looked at me with pity. "Maybe we could build you an autism thinking cap," he said.

"No," I answered. "But you could write down the words you want me to know and I could try really hard to learn them."
"Okay," he said, his voice a mix of disappointment and compassion.

As we continued driving, I considered this role reversal. I thought about my son's willingness to provide accommodation for me, but his sadness at the realization that I needed it.

I thought about how often we ask Bud to do things that we think should be easy -- things like having a conversation with a peer, sitting in a crowded auditorium, or playing a game in Phys Ed -- and about how impossible these things feel to him. I cringed as I thought about how often we coax him to give it a try, to re-think his strategies -- as if a little extra effort and the right motivation were all it would take to rewire his brain.

"So, Mom," he said. "Do you have any autism yet?" -- Mary McLaughlin

I thought about the pity people show toward Bud and his limitations, and I thought about how little Bud pities himself. I wondered who gets to decide what's considered a limitation and what's considered a strength.

And as I thought and drove in silence, Bud scripted and scripted and scripted, and he never missed a single word.

A few weeks later, Bud and I were at home. He powered up his laptop and an image from the script he'd been reciting popped on to his screen. He looked at it, paused, then turned to me.

"So, Mom," he said. "Do you have any autism yet?"

"Not yet, Bud," I said.

But I'm working on it. I'm really, really working on it.

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