"The Kids Who Beat Autism"

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I'm really bothered by articles in mainstream publications, like this recent New York Times Article, that paint autism as being primarily a behavioural disorder.

I think it's really great that some parents can be taught how to communicate with their non-verbal children well enough to teach them how to communicate, but I'm really worried about what will happen to these kids when they come of age and real life knocks the wind out of them. Having been "cured," in childhood only to "regress" in adulthood sounds like a horrible way to grow up and get old.

I think the heart of the matter is in the line from this article,
"..either the child received a misdiagnosis to begin with or the recovery wasn?t as complete as claimed."
Definition, diagnosis, philosophy...

At this point, I believe that the wrong-headed questions surrounding autism today are similar to the antique notion of "senility" which, as it turns out, is not a specific disease but a set of symptoms that can be caused by any number of things (life style, diet, medication, depression, or disease such as alzheimer's or stroke) some of which are treatable and some are not. If something as simple as improving the patient's diet makes the dementia go away. is that proof that the person wasn't really senile?

I think the word "autism" is still useful, but the definition should be "functionally autistic," with the understanding that we don't really know about any given individual what the causes might be or what might help.

Personally, I don't believe that ABA really made the difference, that for most autistic kids it does more harm than good, and that those children would have grown up anyway. Tons of kids in the older generations did, with no professional intervention at all. But that's another story.

In context, what this particular article actually says is:


Just to be clear on what the article is claiming.

I think ABA does sometimes help, a lot. That's what the research shows. Just because one doesn't like the way it can be conducted doesn't mean it makes no difference.

What bothers me is, yes, the idea of pursuing a cure. Who is harmed when I flap my hands or arms? No one. And IMO both neurotypical parents and kids with autism are harmed by the pursuit of cure, and sense of failure if that's not achieved.

The need to control too much to look a certain way becomes more and more important the better you're doing and it's exhausting, and I think that pressure to conform or you're a failure gets worse as you get older, I find less and less acceptance too.

IMO functionally autistic or grown out of it isn't a helpful divide except for measuring support needs because there's always the extra effort, because some of us remain different and there are too many areas of functioning that can all be different, and because when it comes to having children, we should if we want is my belief, but it would be a lie to pretend one has grown out of it because one looks good on the outside. As far as the risk of children having ASD goes....that risk is there because you have it. Not saying people shouldn't have children, just saying if you can pass it on, it isn't really gone, is it?

I NEVER want my daughter who has AS to think she needs to be cured. I have high standards for her, but that's something I hope she never has to go through. I sometimes get that from people, that I need to be fixed and mustn't be me. I wish I could ignore it, but I can't. Yes, some kids learn to talk, find alternatives to constant stimming, learn to engage with the world and that's all great. But cure really is a dirty word, that's why there've been so many threads about the issue.

I agree with this, and I think that all therapies that actually do help autistic individuals function outside of their bedrooms are good and should be (appropriately) pursued.

My only problem here is with the labeling of this as "beating autism," because those individuals who "got better" are still suffering inside from the very real differences in how they experience our world -- differences which they are being taught are not real by this policy of treating autism as nothing but a set of behaviors that can be corrected through training.

I think it's mean and setting them up for failure later in life.

Are you referring to autistic burnout (having a breakdown from all the energy needed to act normal)?

Kind of. The biggest issue here is that kids and teens are being "cured" while they're in this environment where things are being done for them; food, shelter, education and safety are all being taken care of by adults (parents, teachers, etc.), which is completely normal for kids and teens, BUT: Adulthood is a whole different ball game.

A person who is well and truly "cured" of autism would have no more trouble with adult life than any other person, but a person who just looked cured when they were younger because they had a relatively low-stress life without adult responsibilities is going to have a horrible time coping with adult life when it hits.

On top of this, since their disorder had been treated as a behavioral and developmental disorder up to that point -- treated like it can be cured just by teaching new behaviors and will, with treatment, go away in adulthood -- that person is likely to blame themselves for any and all failures in life. It's just sad.

A better comparison would be to the old-time treatment of left-handed people, like my grandmother. Can you force a child to use his right hand, thus creating the illusion of right-handedness? Yes. Whether you SHOULD is another question. The attempt causes neurological damage, stuttering, psychological damage, all for a petty cosmetic issue that was never a problem at all.

Part two: because of my grandmother's experience, my mother went to the opposite extreme. Three of her five children were lefties but, in hind-sight, she now believes they were closer to ambidextrous and could have been nudged in either direction.

I'll acknowledge that, in severe cases, desperate times call for desperate measures. If you're dealing with violence or smearing or something that really is a problem, you do what you need to do. However, for something harmless like flapping, it's better to wait until that child has developed enough to care what people think, at which point he can chose for himself. If he never reaches that point, then it will never matter anyway. Forcing it is never right.

I think the biggest horror is in the attitude that you have to do something in infancy, and that you have NOTHING TO LOSE by trying. That the life of a hand-flapper is not worth living, and that it doesn't matter if the child is crippled by the brutal attempt to cure.

There's not much of a line, but I think the demand to act normal can lead to burnout, but these are separate.

Isn't this thead more about pushing kids who don't generalize well to act and function normally (or how others see normal) in certain situations, function as children and teens that is, and than looking and saying "see, normal!" Puts a lot of pressure on the child and parents. And maybe as an adult can do fine, but there are all kinds of new demands, and if the person has trouble with them, their need is for support and understanding of where they are which is difficult to find when being mistaken for neurotypical because of the huge investment in time, money, as well as emotionally in "being" normal.

It's sad to put so much pressure on a young person to be not quite themself. And I'm not saying ABA is bad, I don't think it has to be. But the idea that you have to beat autism, or at least try really hard.....that's not what I think. Because under stress aspects are always there. And how we see ourselves depends a lot on whether the autism integral to who we are is part of us or something to be killed.

I think all of us can attest to the fact that one with autism can learn to behave like NT's regarding socialization and learning common sense, and just by not voicing our obsessive interests all the time, but we're still autistic.

I beat autism every day by punching myself.

It seems to work well enough.

So no bias here, then?

She talks about being "pressed" into becoming nonautistic, as if it's a choice! People seem to have the arrogant opinion that if a disorder is not perceptible to them, then it is of no concern. So people who suffer from such should do their best to hide it and not complain even though our very identity is being rejected.

She can get stuffed.

Don't ask, don't tell.

I always go nuts whenever I have to take a dump. But when I am done taking a dump I feel normal, almost as if I beat Autism. I bet this kid took a pretty big dump.