A step closer

Out in Iowa, I met a writer, Joe Blair, whose thirteen year old son Michael is autistic.  Michael has just learned to choose.

He makes his wants known by choosing between offered options. 

Before, if you asked him if he wanted a hamburger or a hot dog, he would respond, “Hamburgerhotdog, hamburgerhotdog!”  You could tell by his enthusiasm and his smile that he wanted one or the other, maybe both, but you had to guess which.

Now, when you show him a small set of choices, he can move through the options, narrowing things down until he arrives at what he really wants.

Seems a simple thing.

Babies learn to do this early.  Dog can be taught it.  And once upon a time and still in too many places non-autistic people---the neurotypical---would (and do) think about this in terms of babies and dogs, as a first, infantile step, as a clever trick.

They would (and do) think of the autist as having learned that there are choices, that this is different from that and one might be preferable to the other.  Another small, rudimentary skill that makes life for the autists and those who care for them a little bit more manageable.

And their thinking about what it means stops there.

But that’s not it at all.

Autists like Michael make choices all the time.

In their heads.

They know, have known perhaps since infancy, that this is different from that and not only that one may be preferable to the other but which they actually prefer and why.

They make choices.

They can’t make their choices known.

Their eyes don’t aim at the chosen item.  Their fingers shoot out to point…in the wrong direction.  Their feet walk away with them leaving the already chosen and desperately preferred thing behind.  They will make sounds that are meant to sound like This not that but those sounds come out as No no no or as grunts or shrieks or nonsense or as nothing at all.

Autism was---and still is---seen as a form of mental retardation and autists have been given up on from the beginning as hopelessly lost within their own very narrow and simple inner worlds.  They weren’t taught, they were trained, and trained to not be trouble. 

But autism, as more and more autists have learned to be able to tell us themselves, isn’t a deficiency, it’s a disconnect.  Brain and body can’t communicate.

Autists’ brains send out signals to their bodies and those signals never arrive or the arrive garbled or they are delivered to the wrong muscle or limb.

Signals get sent that the autists’ didn’t mean to send, that they aren’t even aware of sending.

One of the most heartbreaking---and frightening---moments in the movie Wretches & Jabberers is when a journalist asks Tracy Thresher, one of the two autists whose travels around the world are chronicled in the film, what it means to him to be autistic.

Tracy, whose only education when he was a child was to be left by himself to do puzzles all day, who did not speak until he was in his thirties, and who now “talks” by typing, says that it’s being “trapped inside a body that doesn’t work right.”

Trapped.

Asked a similar question, Larry Bissonette, who grew up in an institution, who was not taught but trained and that training accomplished by force and abuse, who like Tracy didn’t talk until he was middle-aged and who now “talks” by typing, says it’s like being trapped in a cage with a wild beast, which is even scarier.

It suggests that the autist can see what other people are seeing when they look at him.

It suggests a constant, terrible struggle against a second, monstrous self.

It suggests fear, pain, and despair.

But what both men’s answers don’t just suggest, they declare, is that there is a consciousness inside there, an awareness, a person who knows himself and knows what is happening to him, inside and outside.  A someone! 

Someone with needs and wants and thoughts and feelings all his own.  Which is what loving relatives and caring friends know.

They know because from time to time they’ve seen that person.

There have been moments of calm, of stillness, of quiet, when their eyes have met and locked and they’ve seen!

Someone is looking back.

Some one.

There’s somebody there trying to reach out to them, somebody they desperately want to reach, take hold of, pull free, save.

But they’ve been told by professionals this is wishful thinking.

Now, think about this.

The autist learns how to make choices.

How to make his choices known.

He chooses a hot dog not a hamburger.

He chooses mustard instead of relative.

He chooses French fries over cole slaw.

Simple choices, but he is telling you something complex about himself.  He is this person not that one.  He is not simply hungry, he is hungry for the things he likes.

This is a conversation.

Perhaps your first real one with him.

The choices can get more complicated, more interesting over time.  The lists you move through together can get longer. 

There’s more to hope for too.

These choices can’t get made, these conversations can’t happen, unless the autist has mastered some self-control.

He has found a way to force the right signals to get through.

For autists like Michael and for their families and caregivers, being able to choose, to focus, control their motions, stay still just long enough to make a choice known, to say by a set of actions “I am the person who prefers this to that” isn’t a baby step forward.

It’s a step closer.

_____________________

Joe and his wife Deb have recently moved their family back to Iowa after a what proved to be a temporary relocation to Massachusetts.  Joe wrote about their reason for the move for the New York Times.

In the piece he talks about their reasons for the move, but he also quotes Deb trying to explain to Michael’s twin sister, who was worried that her new teachers would think she was like him, how it is to be Michael:

One evening Michael’s twin sister, Lucy, said to Deb and me: “The teachers will think I’m stupid. Like Mike.”

“Mike is not stupid,” Deb said.

“Mom,” Lucy said, patiently. “You know what I mean.”

“Yes,” Deb said. “I know what you mean. But you’ve got to know what I mean, too. Imagine if you found yourself in the middle of China somewhere. And everyone was trying to talk to you. But you couldn’t understand them. And everyone thought you were stupid. But you were still just like you are. How would you feel?”

Read the whole essay, For the Boy Who Makes Waves.

And this past January Joe wrote a piece for Salon about Michael’s habit of running away and one of his recent “escapes,” My autistic son vanishes (again).

You’ll note that one of the Blairs’ neighbors identifies Michael as their “mentally retarded kid.”

Comments

[Rebecca Clayton]

I'm no expert on developmental disabilities, but I've spent quite a bit of time with special needs kids in my local school system, and, whatever the nature of their disability, it seems to me that there's always someone "in there" trying to get past the barriers that keep them from participating fully in the world.

Cerebral palsy, autism, Down's syndrome, or a vague diagnosis which includes low IQ and social deficits, the kids seem to be struggling to reach the regular world.

Parents of autistic children want hope and understanding for their children, but we often hear them say their kids are not like "those retarded kids" who will never get better, but perhaps don't feel pain and frustration at their deficits.

I think they all want hope and understanding.

[Ken Muldrew]

I don't know the first thing about what it's like to be autistic, but I do know how intensely frustrating it is to be alone among people who speak a different language. You think that with some good will and gestures you can get by, but that only works when you have the luxury of dealing with people who have time on their hands. Most people don't. They make an effort but it's not enough. Communication requires some small amount of information to be exchanged and an acknowledgment made to assure the other party of success, otherwise the conversation never takes flight. As the foreigner, you feel stupid and impotent with your lack of ability to engage the people in a conversation, but on a one-to-one basis, the situation is perfectly symmetrical.

I imagine it's much, much worse for autists because the relief one feels when returning to the company of others with whom one shares a language is so overwhelmingly joyful that I shudder to think of being denied that salvation. And, of course, I realize that this is just an analogy and that the autist is worse off than a tourist in a strange land. Speaking personally, though, it's a good analogy, because I've struggled with Lance's previous descriptions of Asperger's, and one feels churlish for not feeling empathetic because there is a will to feel it, but no understanding.