Susan's Blog

Saturday, June 21, 2008


One of the stereotypes about autism I am guilty of perpetrating is that there is a deficit in intuitive knowledge. I have observed in Nat over the years an apparent lack of knowledge about things that I thought were “common sense.” But the more I live with him, the more I understand that with autism, the differences between one person and another are not about my world vs. your world. There is no retreating into another world. The closedness we observe may not be what we think. I have come to believe that there is not “surroundings dumbness” (my term) anymore than there is a “mind-blindness.” As satisfying it was for me to believe in this condition in Nat, I now realize that the blindness was on my part. While it is true that Nat has had to be taught many things that I or my other two sons do more naturally, like reading others’ expressions, it is not because he doesn’t know how to tune into others. It’s more because he does not realize that this practice is important. Or he’s not ready to. They are subtle distinctions, but I believe they are absolutely important ones.

I had that sense about him even when he was very little; that his way of being was not necessarily about a deficit, as much as a lack of desire. Not a willful refusal, either, but rather, a simple but perhaps subconscious understanding he had of himself that this was not for him, not yet, perhaps never. Something like that. I could tell that he knew how to say hi to people, or play with toys. What he did not know was why those were good, desirable things. In some ways, my sister was right when she said so long ago, “So? Why does he have to play with stupid toys anyway?”

I used to plead with his teachers, “Tell me how to get him to like being with other kids, not merely to tolerate being with other kids!” (“Tolerating” something is a big goal in the ABA community. The belief is you get enough tolerance stored up within and you eventually generalize to liking that thing, to choosing that thing. I have found this to be so. But what a drag.)

I despaired over his autism, because I thought that it was getting in the way of his happiness. But it was really getting in the way of mine. But for him, maybe it was just that he was not ready for those kinds of interactions, and did not make them a priority until he was. Now he loves to be with other kids, other people. And still, he doesn’t like talking to them, which is basically all I do with other people I like. So I’ve learned: Nat has his way, I have mine.

What Nat knows and doesn’t know is a bit of a mystery to me. What human is not a mystery to another? We think we know what someone is thinking, we take pleasure in predicting another’s actions, or perverse pleasure in recounting another’s allegedly evil agendas. But how often are we right?

Today we went on a bike ride together and I could see that Nat was very much aware of his surroundings and what to do most of the time, like brake when he got to a stop sign or close to other people. I was breathlessly proud of him, watching him take hills effortlessly without shifting (doesn’t know how, doesn’t need to know how, with those muscular legs), and to see the smile on his face, so like mine. But when we got to a high curb, he clearly did not know how to get his bike down to the street. I had to teach him. I would have thought this was a natural motion to people — the bike lift and lower — but not for Nat. So I showed him. And now he knows. Big deal.

Perhaps it stands out to people, this sort of apparently-obvious thing that is not so obvious to guys like Nat. But the fact is, I have to teach obvious things to Ned, Max, and Ben, too. I have to prompt Ben to answer people who ask him questions. I sometimes whisper, hiss-like, to Ned, “Be nice!” And with Max, I still have to let him know when he has taken someone for granted. And I am constantly learning that I truly do not know the “real” reason someone does something I don’t like. Most of the time it has nothing to do with me at all, it turns out!!

So why should Nat’s be considered a deficit or get a pejorative label? Maybe we can just realize that we can teach people things but sometimes we have to wait until they are ready to learn. And the learning never stops. For him and for me.


Oh, Susan, what a brilliant post.
Thank you for this. Today, I needed this.

— added by Drama Mama on Saturday, June 21, 2008 at 11:28 pm

I was thinking last night as I was watching my D, almost 4, happily arrange his hundreds of letters on the rug in an attempt to recreate the logos from his favorite dvds. He spends most of his day doing this, and is extremely content in his mission. Well the thought crossed my mind as I was pondering the new therapies I have lined up for him…are those therapies for him or more for me? Cause at this stage of the game he is truly happy as a little clam, left to his own devices. Thats how his brain works and thats who he is…and whats so bad about that?

— added by eileen on Sunday, June 22, 2008 at 7:30 am

I also got a lesson in this, this week. I’ve started reading an interesting child development series “Your child (insert age)…”

ABA (before they were removed) told me they had to learn (be trained) to do things. Lately, I’ve been panicking over bathing for little boy… and thinking 8 was late for the eldest to finally master bathing on his own..

Guess what.. 8 is when they master bathing on their own.

Doesn’t mean I won’t keep teaching little boy, it’s a good OT and bodyparts lesson… But I’ll remember children/adults develop at their own rates not someone elses.


— added by farmwifetwo on Sunday, June 22, 2008 at 7:32 am

I have my own brand of “my-blindness” where John is concerned. I often find myself thinking that his autism is “getting in the way” of potential happiness, but he shows me daily that he’s far from unhappy. I am so grateful that you share your experiences with Nat – in a way, it helps light the path for me. Thanks.

— added by KAL on Sunday, June 22, 2008 at 9:58 am

I just love your sister’s comment “why does he have to play with stupid toys anyway?”

What a refreshing way to think.

— added by Mom to JBG on Monday, June 23, 2008 at 12:48 am

Beautiful and powerful post, Sue.
You describe the insights you reached about “my-blindness” eloquently. And accessibly.

So much of this is exactly what autistic self-advocates and their allies have been trying to get non-autistic parents, professionals, and policymakers to see and understand, all these many years since Jim Sinclair wrote “Don’t Mourn For Us”.

Andrew Solomon, in his recent New York Magazine article, mischaracterized (misunderstood?) “Don’t Mourn For Us” as polemic. It’s not. What it is, is a verbal Rohrschach. Some parents find it affirming and a springboard for hope; others find it hostile.

I think the diverging pattern of reactions has a lot to do with one’s internal reaction to the notion that one has been “my-blind”. If one is ready to move beyond it, “Don’t Mourn” does not come across as hostile. OTOH, if the notion that one has been “my-blind” engenders defensiveness about having been wrong somehow, or feelings (no matter whether unjustified) of guilt — then “Don’t Mourn” is likely to be an uncomfortable read at least.

I think that the more you can say about how you got to the point where you could look “my-blindness” squarely in the eye, and move beyond it, the more it will help parents who are struggling with the things that keep them from seeing the message of hope and optimism in “Don’t Mourn”.

And that keep them from joining forces with the self-advocates and allies, who, as Bev Harp so eloquently describes, are working on the issues that will matter more and more as their kids grow into adolescence and adulthood.

— added by Phil Schwarz on Monday, June 23, 2008 at 1:04 am

Sort of like when I am presenting to students about autism, one thing I always say is, “Everyone stims, non autistics just stim in more socially accepted ways.”

Great post. I may have to print that out and give it to the students next time I present.

— added by ASDmomNC on Monday, June 23, 2008 at 7:07 am

I’d rather hang out with a flapper than a leg-shaker. -Tina G.

— added by Anonymous on Monday, June 23, 2008 at 7:42 am

“I despaired over his autism, because I thought that it was getting in the way of his happiness. But it was really getting in the way of mine.”

Hammer. Nail. Head.

You can’t force something you have little control over.

— added by Someone Said on Monday, June 23, 2008 at 11:29 am

Great post Susan. Generally, I hate LEGO. It seemed so pointless to me that we take 100 pieces of anything, assemble them once, and then eternally pick up, step on, vaccuum up, and pry from dog’s and/or Jared’s mouth. Yikes, who needs it? Well, after Jared assembled the police car/motorcycle/fire truck boat that limped along on two wheels – I saw the light. That light blinded me when Jared calmly rejected Dollar General offers, and asked for LEGO. You should see that police car/motorcycle/fire truck now. I’m on board Jared’s ship, and it feels great. Lisa

— added by Anonymous on Monday, June 23, 2008 at 11:36 am

Oh my, this post was so right on! I often have thought the same things of my son. I have a sister who is obsessively social, and an Occupational Therapist to boot. You can imagine the pushing I get from her as far as social skills classes, stories, groups, etc. I kinda feel he will learn as he goes. I don’t know, when my husband admitted to me that when he was a kid, and friends would knock at the door to play, and he’d send them away so he could listen to his radio or read, I have to wonder! Like you said, maybe all the social stuff is more important to me than my son, and it really helps to think about it in this way. Thank you for putting it into perspective!

— added by Bonnie on Monday, June 23, 2008 at 3:38 pm

Right on. A few weeks ago at my son’s IEP meeting, I almost wept during a mini-discussion about getting him to “engage” during recess more when his OT said something like “I think we need to be careful about forcing him to constantly engage with other kids. He’s happy out there, walking around with his shades on, why can’t we just let him be who he is…a slightly quirky yet definitely happy and well-adjusted kid?” What a refreshing point of view.

— added by AudraE on Monday, June 23, 2008 at 3:40 pm

Still struggling with this Susan. I’m trying. Really, I am …

— added by Judith U. on Tuesday, June 24, 2008 at 9:32 pm

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