New York Times-The Kids Who Beat Autism

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http://mobile.nytimes.com/2014/08/03/ma ... .html?_r=0

Sorry it's a mobile link.

Cliff notes...severely autistic kid becomes *cured* with a mind numbing amount of cash thrown on a boat load of therapies.

I really hate the word *cured*. I think the kids just learned how to cope better. My husband's sensory issues are just as terrible as when he was 7. Instead of melting down, he isolates or tolerates them. I wouldn't call that cured.

Enjoy or not...

Thank you! I agree with your assessment of the idea of "curing" anyone on the spectrum.

My diagnostician told me in January that "Congratulations! You appear to have cured yourself of whatever Asperger charateristics you might have had when you were younger. But, I can't diagnose you as having anything but GAD and OCD, because you can cope with the AS symptoms." I tried to convince her that my initial, emotional reactions to certain conditions are the same as when I was a kid and had no "coping" skills (not to mention my lifelong characteristics and recent screening-test scores), and that my masking or "coping" is extremely exhausting.

People (like Autism $peaks) who think learning to adapt or mask is a "cure" are just kidding themselves, and appear to me to be making a mess of the good work that we and our allies are trying to accomplish in accommodating our lives. No amount of cash will change that fact.

Imagine the title, the black kid that beat blackness.


Seriously how about something like the kid that refused to be defined by stereotypes.

But me lets keep the stereotype that autism is an affliction going.

Thats a terrible terrible analogy. What are you thinking man?

its extreme but it highlights my point fairly I believe.

Viewing autism as something that needs to be exterminated isn't something I is cool with.

Did you read the whole article? It's not a pro-cure article at all. It's an article discussing exactly what you're complaining about...

"Ne?eman and others strongly support treatments that improve communication and help people develop cognitive, social and independent-living skills. But they deeply resent the focus on erasing autism altogether. Why is no longer being autistic more of an optimal outcome than being an autistic person who lives independently, has friends and a job and is a contributing member of society?...Indeed, Ne?eman argues that just as gay people ?cured? of homosexuality are simply hiding their real self, people deemed no longer autistic have simply become quite good at passing, an illusion that comes at a psychic cost. " that's a quote from the article.

My opinion is that I would love my LF kids to learn how to communicate, and have even some independence. I think it's sad that I will probably NEVER know what my son is thinking. I know that's highly offensive to people on WP (who already can communicate...). Do I think there is a cure? No. Do I wish there was one? Sure, if it meant they would learn how to communicate. I'm not hung up on the mild aspects like hand-flapping, just the disabling parts of it.

I thought it was a very interesting article.

No, it's a terrible analogy. Even if you think autism is the greatest thing ever, it's still a terrible analogy. Autism is a difference at the very least. Black people are not different than white people. They are no more different than people with in-bellybuttons compared to people with out-bellybuttons.

I believe that parents should be active in the advancement of their autistic children's abilities, and will, in most such cases, benefit their children with better self supports to assist them throughout life. Unfortunately, while this report was balanced in its inclusion of those who believe that seeking a cure for autism is unreasonable and, in most cases, unethical, it also featured those who have convinced themselves and, in some cases, their autistic children that a strenuous focus on the advancement of their abilities is enough to "beat" autism; even the report's headline boasted as much.

So, there was a substantial amount of boosterism of the idea of a cure with no evidence offered to the reader that such enthusiasm is warranted beyond the anecdotal life stories. While the author states unequivocally that "no evidence indicates that any of them can alleviate any of the core symptoms of autism, let alone eradicate it[,]" the author also makes little attempt to hide the possibility.

It was this held-out hope that I believe should have been examined much more closely than the day-in-the-life descriptions. After all, Carl Sagan reminded everyone that "[e]xtraordinary claims require extraordinary evidence." My concern in this instance was that, while extraordinary claims were strongly hinted at, the extraordinary evidence was never presented.

I think the point of the article was to discuss the different views... you can't do that if you only include one view point. And the article ENDS with the child who received crazy amount of therapy but didn't "recover".

"The idea that Matthew won?t recover no longer pains Jackie. ?At some point,? she told me, ?I realized he was never going to be normal. He?s his own normal. And I realized Matthew?s autism wasn?t the enemy; it?s what he is. I had to make peace with that. If Matthew was still unhappy, I?d still be fighting. But he?s happy. Frankly, he?s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He?s very cuddly. He gives us endless kisses. I consider all that a victory.?"

There is a reason why that was the concluding paragraph. It just doesn't strike me as "pro-cure"...

That is a good analogy for the exact reason you are offended. It is such a preposterously racist statement that is so offensive nobody who values their career would dare write it. But similar language is written about autistics everyday.

As for the article itself their are enough parents who claim they have "cured", "recovered" etc their kid to make it a newsworthy topic. But the Autism "is a difference" viewpoint was explained in more depth then I have ever seen in a mainstream publication

Last edited by ASPartOfMe on 02 Aug 2014, 4:24 pm, edited 1 time in total.

The media loves to take published scientific articles and sensationalize them. They'll either magnify uncertainty or, as in this case, magnify conclusiveness.

Where the line is drawn by DSM writers for what constitutes autism is subjective. The original study acknowledged its own weaknesses.

Autism is both a disability and a personality/identity. Unfortunately, many pro-cure people are unable to grasp ideas with multiple layers.

I was "cured" of autism for years, decades actually. I was pretty much only"me" when I was caring for my children, which was much of the time. Through years of practice and study, I actually[ for a short period of time], became a woman many women {NTwomen] wished to be like [that is what I was told] Sometimes, I would get a "someday people are going to see who you really are and your entire life will fall apart" feeling that I would brush aside.

Someday happened. For me, there was a point that I could no longer pretend, especially to myself. The ramifications were/are devastating.

We need to be our authentic selves in a place where we are accepted,embraced,appreciated. And then we will SHINE. And that is one of the reasons that I started AutHaven,why I am involved with Ocate cliffs and other projects. It is the reason I am trying to put together an Autistic community within an already existing community. It is why I facillitate a group for other Autistic ACONS [Adult children of Narcississts] and why I am researching entrepreneurship and business partnerships for Autistics.

I am Vicky. I still hurt a lot [ I cry several hours a day] But I am a proud Autistic. I want my Autistic brothers and sisters to see how awesome and likeable they are. I detest even the thought of burying self to emulate a stranger a cure.

Yet we are constantly told by many of those people that it is we who can't see the big picture. It is considered a key autistic trait.

Where the hell are the parents? Why are these kids beating up AS people?

It's just peppered with nauseating bull. The curebie POV. The idea that parents of autistic kids "lost" an NT child who can be "recovered." (It talks about how ABA helped one mom "reclaim her son"... in which case, who/what was the autistic kid? A changeling?) The focus on caregivers' perspectives rather than the autistics'. The idea that not showing a behavior due to years of constant work and training must mean that you grew out of it rather than that you're constantly putting huge amounts of concentration and effort into not doing it. (I've been self-training to look at people's noses to simulate eye contact. I still have to remind myself, and I still feel awkward.) The idea that we on the spectrum can't possibly be cheerful people or try to make friends. I honestly couldn't finish the article; it made me stew and nearly throw up at the same time.

Yeah, I thought it was a great analogy. The article is disgusting - even if it does say they're not really "cured" but better at hiding it - the whole thing's about how hard it is for the poor parents who just want a normal kid and start training them to behave how they want them to be, because having an autistic kid is too uncomfortable for them. Eww.