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?




The author also noted that one of the parents stayed home after taking an additional $100,000 mortgage on their house to pay for treatment. Gosh, if only people would just do that.

Like you I’d love for my son to be able to talk to us, or at least develop the savvy to properly communicate with us, and to negotiate the world around him. But where does he start and the autism begin, and how intertwined are they?

— added by Ed P. on Thursday, July 31, 2014 at 6:38 pm

I was so pleased to see you’d written about this piece. I got a sick feeling when I first saw the headline.

The studies she references seem to suggest there is no rhyme or reason to the small number of kids who “shed” their diagnosis (some didn’t do intensive ABA).

I thought the comments from the mom who moved her family after the son’s autism diagnosis was removed to start “new,” and thereafter kept their son’s autism experience a “secret” from people, was telling.

It is always dangerous and wrong to imply that parents control the ‘outcome’ of any disability. And, as you say, to position cure as the only acceptable “outcome” is damaging and small-minded. I loved hearing the mom’s description at the end of the young man who lives in a group home and is happy.

— added by Louise at BLOOM on Thursday, July 31, 2014 at 6:52 pm

FEIN asked me at IACC “what is elopement?”

She has no credibility what so ever.

I can believe some people with severely expressed ASD can evolve to possible AS diagnosis however, I do not believe anyone is ‘cured’ or that it should be an objective. Will they work? Will they marry? If they are trying to navigate the world without their autism identity, it’s highly unlikely. The study is premature in it’s projection. She acknowledged in her presentation that phobias and anxiety still manifest. What will happen when they hit that wall of high school, college, employment, marriage? They will have no identity or community to fall back on.
And “not qualifying” means no services.
Be careful what you ask for.
Do I want to see less suffering? Less pain (especially sensory)? YES> But that’s not the same as “indistinguishable from peers”.

— added by Dena Gassner on Thursday, July 31, 2014 at 9:20 pm

Your response to this writer’s “big discovery” made me laugh out loud. I too have mixed feelings about behavior modification techniques but do believe it has its place. Can’t live and die by these theories and methods. Too much focus on every little thing makes us lose our perspective on the whole person. Thanks for making me laugh!

— added by Lisa C on Friday, August 1, 2014 at 9:54 am

My takeaway from it was also that throwing more money at autism is surely the cure. I mean, I stay at home, so that obviously isn’t it. Here is another thing, I read about this from another source and in that facebook post, a friend of the kiddo’s mom came on and said that the mom would be outraged at the reaction of the parents who were basically calling Bullshit.

If your kid is suddenly non-autistic after all these years, you have no room to be outraged. All you can be is grateful that something worked, because, for the rest of us, it’s autism 364 for the rest of our lives and hope to God we live forever, or who is going to take care of our kid(s) who have autism for good?


— added by JanB on Friday, August 1, 2014 at 11:34 am

When I chanced upon that article yesterday, I couldn’t bear to do anything but skim it. I read so many “My child is CURED!” stories when my now-17 year old was a preschooler, and I don’t need to read any more of them, been there, done that, as they say. But I suppose every new cohort has to go through that phase. There will probably always be an audience eager for the cure story. I though, am long cured of needing cure stories.

I thought about not reading it, about stopping halfway, but I trudged on, knowing somebody or another was going to email it to me or bring it up — and someone did this morning — and I might need to know what the article said before I launched into my usual “there are many different autisms, all with their own etiologies and prognoses, so it is not surprising that one type responds well to the existing interventions.” Which is what I repeated for the x millionth time this morning.

Anyway, thank you for putting into words so clearly many of my inchoate feelings about the premises the article is based on. And as someone who is married to someone who could certainly fit the “He’s beaten it!” criteria, I can confirm my husband did hear “many messages…about himself along the way, that the way he does things naturally is not acceptable,” and those messages do have very long-term effects.

— added by Another mom on Friday, August 1, 2014 at 5:23 pm

The thing is, Jan, I would never scoff at the progress the child has made. Any progress towards skills that will give one an easier life is probably a good thing. BUT we have to be sure that there is not a negative consequence to acquiring those skills, like feeling like everything you do is wrong.

— added by Susan Senator on Friday, August 1, 2014 at 5:26 pm

I like the saying “When you’ve met one person with Autism, you’ve met one person with Autism”…sort of the same with the “cure” idea. I believe you can’t cure Autism, if you really have it you will always have it to some degree.

— added by Barbara on Saturday, August 2, 2014 at 1:15 pm

The “no longer autistic” still have “issues”. I “cured” one, but he’s not “normal”.

The anti-cure crowd equates it to a brain transplant but it’s not. It’s simply speech and education skills that therefore lead to being able to function in the real world.

But it’s not perfect, and it’s the social part that’s still wrong. As I mention to people about my eldest “he passes for normal”.

— added by farmwifetwo on Saturday, August 2, 2014 at 7:15 pm


— added by jess on Tuesday, September 9, 2014 at 2:07 pm

Short of an actual brain transplant – a procedure or procedures where the totality of the autistic individual is removed by main force – no autist (irrespective of seeming functioning in society) will ever truly ‘belong’.

Belonging is a consequence of being altogether ‘Normal’, which is having the correct instincts operating in the social realm. This ultimately shows forth as both ‘Normal’ behaviors AND ‘Normal’ patterns of brainwaves – the combination of which causes the ‘fully-normal’ individual to both know and accept his or her appropriate (magical, if one speaks of the unconscious) place in the ‘Great Chain of Being’.

If an autist is named ‘Low Functioning’, its place is somewhere between a plague-bearing rat and an eyesore; and the less such an evil is seen, the better.

If an autist is named ‘High Functioning’ – much as I am – then its place is utterly outside that entire hierarchy – and those evils (because of their greater cursedness) must be destroyed without mercy.

The continued existence of all autistic individuals pollutes the magickal purity of mankind; and once those evils are destroyed, then the ‘Race’ shall regain its lost purpose and power.

Note: this is the unconscious belief common to many, perhaps most Normal persons. If this talk of ‘Magic’ sounds a bit much, then read Frazer’s ‘Golden Bough’, followed by Jung’s ‘Red Book’. Both documents are available online in .PDF form (though the files are quite large…)

— added by dennis on Wednesday, November 12, 2014 at 4:28 pm

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