Susan's Blog

Monday, May 10, 2010

We just don’t know

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.


Have you ever tried one of those communication devices?? Or even sitting with him at the computer and talking to each other using the device not words?? One of the reasons the OT is pushing my 8yr old to type is that as he ages maybe one or the other could be a communication device. Or, as week keep pushing, many children start talking btwn the ages of 12 and 14, hopefully it is us. BUT, I do know that without a foundation, it isn’t going to happen, so I keep trying to get one put in.

I can confirm little boy knows much more than he’ll ever tell you. That he knows when he’s be left out. That unlike whatever those adult autistics say about it… it’s NOT OK, and it’s very upsetting to here “R do…..” followed by tears.

— added by farmwifetwo on Monday, May 10, 2010 at 7:49 am

Oh, I certainly have tried a lot of communicating techniques with Nat. He’s 20. I definitely have. I am not giving up; in fact, I’m going to redouble my efforts now.

— added by Susan Senator on Monday, May 10, 2010 at 8:17 am

I would love to hear more on this, and if he changes his interaction style with you…this is very intuitive of you, and I think will help take Nat to another level in his communication, although it may be subtle. If you felt it was time to try something new, it probably was. Mom’s just “know” these things.

— added by Candy on Monday, May 10, 2010 at 9:30 am

There are a couple of blogs I’d like to recommend (they’re listed in the side bar of my own blogs in a list of blogs I follow):


— added by Penny on Monday, May 10, 2010 at 9:33 am

Susan, I thought this post was just beautiful. It seems a turning point, in how he is a member of the family, of how he is your son, of his place as an adult, everything seemed to ’tilt’ with this post and this reflection of yours. I found it poignant. I think your statement to him and your apology spoke volumes to him. You are brave, your are a great mother and I am proud to call you my friend.

— added by Penny on Monday, May 10, 2010 at 10:12 am

Thanks, Penny. This really felt like a turning point for me, and I spoke about this when I was there at my mom’s house; everyone agreed with what I was saying, and we all agreed to really view Nat as a young man no matter how tempting it may be to cute-ify him.

— added by Susan Senator on Monday, May 10, 2010 at 10:31 am

Well done. Any young man who routinely brings the laundry deserves gobs of respect. I hope all the mothers who read this blog had a great mothers day, watching my boys play in the sand put a smile on my face all day. Lisa

— added by lisa on Monday, May 10, 2010 at 11:39 am

You are really wonderful with this new insight, Sue. Happy belated Mother’s Day.

— added by Donna on Monday, May 10, 2010 at 11:53 am

Thanks for this, Susan. I’ve recently redoubled my efforts not to “baby” him in the area of self-help skills, trying to remind myself that every time I do something for him that he can do for himself, it’s truly to his detriment. I need to redouble my efforts in “adjusting” my communication levels with him as well.

Boy, it never ends, does it?

— added by kim mccafferty on Monday, May 10, 2010 at 2:26 pm

My child is 10 years old, and I am aware that I can contribute to learned helplessness when I baby her. Maybe I’m acting on a very wrong unconscious belief that she is unable to step up – yet, when I change *me* and allow her opportunities, she steps up. I make this discovery all the time – you’d think I’d have learned that lesson by now.


— added by Penny on Tuesday, May 11, 2010 at 7:19 am

Susan, have you seen these new apps? Does Nat use an iPhone or iPod Touch?

I am always trying to find new ways to capture my son’s true feelings. He has a camera now and loves it. His photos provide insight into what is important to him. He takes them, downloads them onto his computer and sends them to family. I wish we had done this years ago!

— added by Jane in Wisconsin on Wednesday, May 12, 2010 at 12:50 am

I found this post very thought-provoking. I know I tend to baby my boys. For one thing, they are only five, and they don’t do things such as use a spoon or drink well from a cup yet. But their cognition is probably way ahead of their motor skills.

I think a lot of what they hear is garbled and confusing, but I like the idea of assuming they are understanding more of it than I might know. There are so many kids who start typing and their parents suddenly find out how much they really do understand. I’m going to keep it in mind.

— added by Alice on Thursday, May 13, 2010 at 12:20 pm

It boils down to two words: presume competence.
(For 20 years now, a core principle of AutCom, the Autism National Committee.)
More power to you, and Nat, and the rest of your family, in doing so.

— added by Phil Schwarz on Saturday, May 15, 2010 at 2:51 am