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We just don’t know

Posted May 10 2010 3:46am

All this time I’ve been saying that I have to be careful of being too negative about autism, especially around Nat, for fear of hurting him or others with ASD’s.  I’ve talked about the neurodiversity movement, of autistics and non-autistic family members who argue for the right to dignity, acceptance, and accommodation rather than for a cure.  Or, more importantly, they don’t want to talk about autism with disgust because it is a part of them.

I have tried to tread lightly because I don’t want to be part of the problem; I don’t want to hurt autistics who are fighting for civil rights and dignity.  Nor do I want to hurt other parents who are struggling to help and understand their autistic children to feel bad about what they do.  Even if it is to cure autism.  It’s not my business to criticize them; they are another family and you just can’t do that.  You don’t know what it is like for them.  You don’t know what they know.  You don’t know.

This weekend I started asking myself, “what if I were to think and act as if I really don’t know what it is like for Nat?  Eliminate all the years of assumptions, the labels (MR, DD), the interpretations that I’ve been laboring under.  What if I approach Nat the way I approached “A”, my friend’s son , the other day, that is, assuming in a new way?  Assuming that he understands many things?  I’ve been saying all this time that I believe Nat understands a lot, but that he “just has trouble” getting the words out.  I know it is more complicated than that; but what if it is not that much more complicated than that?  What if I think about that statement, and posit that Nat understands 75% of what people say?  Or 50%?  One third?

Let’s say that Nat actually does understand in some ways what is being said around him — and about him — but that he, like “A,” can’t do anything about it.  “A” is inside a physical form that interferes with his self-expression, his conversation, his interactions with the world.  So, many of those who’ve studied autism theorize that there is receptive language but not expressive.  And the more able to converse an autistic person, the more we hear about how they are aware of what goes on around them.

What, then, do I know about Nat’s reality?  He appears “out of it” when he walks around talking to himself.  But if he understands even a third of what we say around him, that is a lot.  That is enough.  That means that he has some recognition that he is different.  But does he know why or how he is different?

He orbits us, walking in and out of my mother’s kitchen this weekend, where the rest of us gathered to drink coffee and talk.  The noise level of several different conversations at once — Senator style — is pretty bad in there.  Nat is long used to not being a part of the talking, because something gets in the way for him.  He is smiling and chatting to himself, and yet when you address him directly, he stops and grows as still as a stone, as serious as a student in a difficult class.  He looks afraid, actually.  He labors for the answer.  What comes out is something that sounds young, it sounds innocent and “babyish,” and so we have come to feel that he is kind of babyish himself.  Our experience of him is that he’s not really a part of what’s going on, not listening, because of what comes out of his mouth.

But what if we are mistaken about Nat and his comprehension?  After talking to “A,” who has CP,  I am certain that we are.  Because this weekend I set aside all of my previous assumptions about Nat and I looked at him the way I look at Max.  Not that they are the same — not at all.  But I decided that I would not say or do anything to Nat that I would not say to Max.  I would not just go up to him, “Natty!”  and hug him.  Yes, I hug Max at times, but it is always with a lot of checking to be sure it is okay.

What did I notice?  That Nat hung around us a lot, watching quietly, until someone noticed him, and then he would start moving again, maybe even leave the room.  He would get more animated in his self-talking, walking away from us, less “reachable.” I wondered if the self-talking was maybe a defense?  A way to block us out — and our painfully confusing words, our talking-down ways — and have something of his own?

I asked this question years ago, when we first took the boys to Disneyland, when Nat was around 5:  What if he knows somehow that he is really different from us in that he cannot participate with us?  What if he knows, but doesn’t know why? What would a person do with that question, and all that it implies, if he didn’t know how to ask?  If he didn’t even have the inward words to work it out?  Nothing but noise, confusion?  What must that be like?

In the last two years I have seen tremendous growth in Nat’s abilities.  He willingly and competently goes to school and work, and learns new things without any trouble.  He controls his anger now, and finds ways to communicate what he needs, even though his speech level is almost like a preschooler’s.  He has friends, sports; he has preferred activities.  He can go and do just about anything you ask him to do.  He may not understand, and he certainly does not know how to ask you to clarify; but he will go and try to find that book you left in your room, or bring down the laundry.  Always.

I asked myself yesterday, in the morning of Mother’s Day, what if he really does understand some of what is being said around him — and about him — but that he can give no indication of this, just the way that “A” cannot make his words clear and sharp.  You have to listen very carefully to “A.” You have to take a lot of time and effort and focus.  So does he.  But you see that it is all there.

I’m not saying that it is all there with Nat.  This is not just about being able to talk.  There are certainly other issues.  I know he has some delays, processing problems, issues with connecting things up in his brain.  I know there are circuitry issues in his neurology.  But if Nat does comprehend some of what we are saying, then that is an entire universe of knowledge.  That has cataclysmic ramifications for us. It means that over the years he has learned ways of withdrawing from us because he does not know how to keep up.  Because he perhaps suspects that people don’t take him seriously.  That a lot of what he gets from me is this amorphous affection.  A lot of explanation, but perhaps in an overly simplistic way.  A lot of forgetting that he is really right there.

I turned to him yesterday and said, “Nat, I am sorry that I have treated you like a baby at times.  I know you have trouble talking, but that you understand a lot.  I am going to try really hard to just talk slower and wait for you to respond.  I am not going to baby you.”

He listened, looked at me, said, okay.  He looked serious, drawn brow.  I don’t know what he thought or felt.  But I do know that he thought or felt something, and that is so much.

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