Susan's Blog

Thursday, July 31, 2014

Is De-Auticizing the Goal?

This New York Times piece came my way, and frankly I’m pretty disappointed. “Kids Who ‘Beat’ Autism” is the title, so right away you can see the bias. The author, Ruth Padawer, obviously thinks she is onto something new (decades-old Applied Behavioral Analysis, ABA, of all things) by showing that sometimes such treatments “work” and the kids lose all their autism symptoms. But what she is not seeing is the harm such a viewpoint can unintentionally cause.

The thrust of the article is to draw our sympathy for the families whose kids do not de-auticize, no matter how hard they tried; I don’t even know where to start with this. I understand how hard having autism can be — not firsthand, because I don’t have it — because I have witnessed my own autistic son struggle with it. But to be more precise, he struggles with communication and processing issues that have gotten in the way of his understanding mainstream behavior and interaction. In fact, typical interaction is so puzzling for him that he is often silent. When you do talk to him, it takes long moments for him to find the words. Sometimes it seems like he doesn’t even want you to talk to him, and I have to assume that is because of the effort it takes him.

I do feel for Nat, and I do feel for my family’s and other families’ struggles with disability. Disability can often mean hardship of one kind or another. Blame it on the disability or blame it on an overly complicated intolerant mainstream human race — any way you slice it, having autism is something a person does struggle with at some point or maybe all of his life. It is hard to be a square peg in a round hole.

But the author of this article reminds me of the person who comes to an Internet joke that went around years ago, and passes it along to everyone she knows as the most clever thing ever. Wow, cats with captions! Who knew? In this case, imagine, behavioral modification and positive reinforcement can be effective in squelching certain ways of acting! And oh how tragic it is — why it is downright a puzzle piece — that the other kid just smiles and makes noises. What the heck is wrong with him?  (fist shake at the world that did me wrong.)

And yet!  I empathize with that mother because I do want Nat to be able to talk, I think it would help him lead an easier life and be more independent and that is a value of mine. But he just might not be able to do more than he does, ever, and that is that.  And I’ll never be a UN interpreter or a ballerina. I will never be able to run regularly because of my knees. I will always struggle with depression, no matter how hard I try. And how about you? Does your lack of autism make you happy? Or is there something that makes you less than perfect, and struggle?

Should you feel sorry for me because Nat is fairly severely autistic after all this time? Should you pity him? No! If you read this blog regularly, you love him! You’re proud of him. And your own kid.

We must be able to move on to, “Well, I will try to help him lead the best life he can, and most of all, I want him to be safe and happy.”

What’s more, to tell you the truth I sympathized a little also with the kid who is now “no longer autistic.” He had so many aspects of his behavior taken over by others, so that he could learn how not to monopolize a conversation or be one-tracked. Sure, he can now be in mainstream society. But there are so many messages he may have learned about himself along the way, that the way he does things naturally is not acceptable. His mom was “ecstatic,”when the doctor said he could find no more autistic symptoms in her son, and to be honest, I would be too. Because maybe doors would open more for Nat. But he also has so many doors open for him, from his own growth and sweet personality. You can’t say that about a lot of so-called verbal people.

The author of the article writes the piece as if there is unquestionably no other way to feel about autism except that those that “beat” it are the kids you feel happy about, and the others are kids you feel sorry for. What kind of a message, then, is she conveying about lifelong disability? When are we ever going to get passed this quest for perfection?



Friday, July 11, 2014

Loving Nat

Loving Nat — The Jewish Advocate, July 11, 2014

My day suddenly became very dark when I got the call: “Nat’s had an incident.”

This happened when he was at his most anxious, and we did not know why. He was biting himself. Yelling, stomping. He’d punched a wall, apparently. He had to leave the store he was in. No, Nat, no! I moaned in my head. Not after all your hard work.

Nat is 24 and has autism, alleged developmental delay, possible sensory issues, suspected processing disorders, really a whole smorgasbord of challenges and disabilities. He also has a keen eye for detail, an open mind, and he’s very, very beautiful. That’s neither here nor there, but I mention it because I hate giving a whole dirty laundry list of his troubles and casting him in that light, when truly, Nat shines in a light all his own. Autism has been called a kidnapper, a scourge, a monster-creator. But the real truth about it – the worst thing about autism – is that it casts a very long shadow. People see it, and not the person.

But here’s something interesting: Shadow isn’t a bad thing. Shadow just is. It exists because of light. Shadow and light together help us see something. But when Nat’s behavior is inexplicable and aggressive, I feel like he disappears inside the shadow and I can’t see him. I forget that shadow is a part of everything. Light needs dark. Yin and yang. Chiaroscuro.

For the first time in a long while, I prayed. My way of praying is not in Hebrew. I kind of just talk to G-d. I try to connect with Him, just like I do with Nat. I think of G-d as a person who knows so much, but I don’t know what he knows. Perhaps G-d has His own brand of autism: He’s all there, but it takes a lot to feel that you are communicating effectively. And also, I feel love for G-d, without question. It just is, like my love for my children.

I did what I could in my fashion of praying for Nat to come out of this dark moment. I talked until I felt done. Then real life took over again, as we got a phone call after phone call from Nat’s group home manager, into the night, to let us know that Nat was not himself, that he was getting out of bed, obsessing about other people’s routines. We all slept badly.

Morning came, and so did another call. The word was, Nat was not “stable enough” to go to his day program. This had never happened before, in two years. What was it, Nat? Please, don’t go back to those days when you were 17 and biting, jumping, screaming! I didn’t even know what it was about then.

But I heard from the autism community a long time ago that we need to check these “behaviors” out. We should always get our children examined when they “act out” and be absolutely sure they are not sick. Thank goodness others know that, even if I cower under the covers and shudder with the thought, “It’s baaaack.”

Here and there we’d been hearing from the house manager and also maybe it was the day-hab director that they had asked Nat if he was feeling sick he’d said, “froat.” I was skeptical; whenever Nat is asked about his health, he just seems to say what he thinks you want to hear. I always tell medical professionals that he is unreliable that way, inaccurate. Still, I take him – of course I do.

The house manager told us this morning that he was taking Nat to the doctor, and did I want to come? Did I want to come! Within a few minutes, I had taken over. First we’d take Nat out for a treat – to Starbucks – and then to the doctor. We got to Starbucks and sat on one of those bench tables, right near two women who were deep in conversation. Nat chewed his chocolate-chocolate cookie and I sipped my creamy drink. Ned had a smoothie.

Nat seemed strangely calm. He wanted to see the doctor – that was clear. His spirit seemed soft once more. I hoped that the crisis might be over, that it was an aberration, all because he was sick. Later on we would learn that he did indeed have strep throat. Good for you, Nat, for telling us all. I will never doubt him again. He had been getting sick, and he’d been very uncomfortable, and he had acted it. His behavior was perfectly natural, given the circumstances.

But even before the affirmation from the positive strep test, I knew that “ it” wasn’t back.He was back.

He’d never gone. He’d just retreated into the shadows while he was sick, like we all do.

Looking down at his cookie, he put his hand through his hair and ruffled it. I absentmindedly reached out and straightened it. The woman next to me suddenly said, “He’s got great hair.”

“Oh, thanks,” I said. I often say “thank you” for Nat. I looked at Nat. His hair, thick, soft and golden like a chick’s feathers.

“Really, he’s beautiful,” the woman said. “He’s lucky to have been born that way,” she said.

And as I sat there, basking in my son’s light, I kind of felt like, yeah, it is definitely worth it, trying to connect with someone you love – whether it is your child, or even G-d.