Tuesday, August 27, 2013

Autism Diaries: the eccentric child inside

When it comes to autism, there is no normal child locked inside. Instead, there may be a highly interesting child in there; much more interesting than you can possibly imagine until you start turning the locks.

This, of course, is especially true of children who are minimally verbal. After all, it is the phrases people speak that most clearly reveal the thoughts they think. Plus, when it comes to the more complex thoughts, like thinking about what other people are thinking, it is only by acquiring the more complex linguistic structures, like sentences embedded inside of sentences, that people are able to have these thoughts in the first place.

Unlocking a highly autistic child, then, doesn't entail Bettelheimian psychoanalysis; or chelation therapy; or gluten-free diets; or horseback riding and swimming with dolphins. Except for children with severe speech apraxia, it does not even entail alternative communication devices. Instead, it entails intensive instruction in language--instruction that is intensive and systematic enough to make for what the child hasn't picked up, as other children do, through normal social immersion.

Intensive instruction in language, particularly in grammar, is what has unlocked J. It is what's enabled me, most recently, to ascertain his thoughts on genetic engineering.

"Do you think some day people will be able to fix bad genes?" he asked me, recently, as we walked through a wildlife refuge along the Jersey shore.

"That's already possible. And some day, people will be able to genetically engineer things like deafness." I pause. But J has asked me so many annoying, repetitive questions that I hesitate only a moment. "If your deafness could be genetically engineered away, would you choose for that to happen?"

He answers immediately. "Yes."

I pause again. "What about if people could genetically engineer away your autism?"

He pauses. Is he going to ignore the question and change the subject back to ceiling fans?

He speaks. "I would be worried that my personality would change. I would be worried that I would lose my memories."

I pause. "What if it only changed a small part of you? What if it only changed the part of you that asks annoying questions and bothers people?"

He doesn't pause. "I would be worried that it would be a sudden change."

"What if it's gradual?"

"I would be worried that some good stuff would change along with the bad stuff. Like when people destroy an old building. Do they take all the good stuff out of the building before they destroy it?"

"What if you know that only the bad stuff will be engineered away?"

"What if that's not possible?"

Autism, according to one theory, involves an "absent self"--a deep inability to introspect. But perhaps this only describes those who remain unlocked. How many neurotypical 17-year-olds can so quickly identify the two most fundamental aspects of selfhood, and of self-preservation: persistence of memory and gradualness of change? Or the entanglement, within the self and within condemned buildings, of the good with the bad?


Anonymous said...

In an ideal world, we'd have not only an autism cure, but a neurotypicality cure, that would, likewise, engineer away the bad stuff and only the bad stuff about the person! :)

Deirdre Mundy said...

To be fair, I know a lot of non-autistic people who ask annoying questions. It's just they run more to "Why do you have so many kids? Aren't you done yet" Instead of "How many fans do you have in your house?"

Personally, I prefer the autistic questions.

Katharine Beals said...

Good points!

Auntie Ann said...

You've got a smart kid there!