I first found out about this project through those commercials where actors from Law & Order: SVU say in deep, tragic voices: "You know the numbers of autism... blah-blah ... go to AutismSpeaks.org." First of all, it feels not a little disturbing that the project would choose actors from a show that concentrates on sexual crimes, pedophilia, and child molestation to talk about autism. Is there some connection they are trying to promote between autism and sexual crimes? I sincerely hope not, but it always made me wonder.
Another thing that annoyed me about Autism Speaks is the language they use to refer to autism. They insist on talking about an autism epidemic but fail to give any proof for its existence. In fact, there is NO "autism epidemic." The only thing that is changing is the emergence of better tools to diagnose autism. But, of course, talking about it in terms of an epidemic maintains the idea that autism is a scary disease (The word disease actually keeps getting repeated over and over at the project's website.) They also refer to autism as "an urgent and growing public health crisis." This kind of unhealthy fear-mongering is beyond frustrating. It makes people treat autistics as some sort of diseased, scary objects, rather than people who simply are a certain way (and might actually be pretty content with it).
I saw this documentary about people with Asperger's** where a mother (evidently brainwashed by projects like Autism Speaks) learns that her son has been diagnosed with Asperger's. Her reaction to this was beyond unhealthy. She started howling (I mean it, people, there is no other way to describe it) about how horrible it was to find out that her son's life was over and that he will never experience anything good the way "normal" children do. Anybody who is even marginally familiar with Asperger's knows that it does not mean your life is over and that it does not have to lead people to mourn you as if you were on your deathbed. When I read the article that Autism Speaks dedicates to Asperger's, though, I realized why some people might see this diagnosis in such tragic terms. "Disorder, difficult, challenging, impossible,obssessive, awkward, daily challenges, isolated, overwhelmed, misunderstood, minefields, frustration, despair, etc., etc." are just some of the terms this pretty short article uses to brainwash people into thinking that if they have Asperger's, their life is, indeed, over.
My honest belief is that all this overexaggerated autism-is-a-horrible-scary-disease hysteria is being promoted by some pharmaceutical company that is planning to release a bunch of drugs and is preparing the ground to make people believe that we need to buy their junk.
** I don't speak about Asperger's so much because I think it's less deserving of attention than other forms of autism. It is simply what I know best and, unlike people at Autism Speaks, I dislike pontificating about subjects that are completely unfamiliar and alien to me.
6 comments:
rates have gone up 12 fold in 30 years, and while increased diagnosis may explain some it doesn't negate the possibility of an increase. More to the point early intervention means everything and we are aware of more children who need help regardless of of the rate of increase. So little is understood that research is very important. There has been more and more support for a genetic model, but we don't know how complicated this is by environmental models. Science has supported that certain diets do seem to help.
Most recently there has been a link made between genetic mutation forming far more often in fathers over 40. (I couldn't tell from the study if this can be passed on through the generations.) We already knew about the link between women and a variety of disorders being increased in risk over 30 and increasingly thereafter.
It may be a bit obvious but I have to wonder if increased rates may in part be to women putting off childbirth for ten to twenty years than former generations.
Our 3 year old was just diagnosed and we are trying to see it less as negative and more of a paradigm shift, but I don't underestimate how terrible a burden it can be for some parents or for people with severe autism. Recently a man killed himself and his autistic son. They had been sent away from a hospital. The boy had screamed for 24 hours straight and they didn't have the resources or know how to help him. Research and support is needed.
I will not even address all the lies and distortions that are present in every single line of your comment. I just have one question: what led you to believe that my blog is a good place for you to spread your vicious propaganda?
Dear Clarissa,
I believe that there is a whole spectrum of intensity of autism or Asperger's syndrom manifestations. Therefore, what worked for you, or what you now think could work for you (based on your later post) may not work for other people. I am afraid that for every asperger who made it to professor of Spanish (or physics), there are many more who did not.
And research is indeed needed to help those people. Not all of them do not want to be helped. Or are you treating the issue by analogy with homosexuality, so that you consider the very idea of curing autism or Asperger's (as opposed to just adapting to it and accepting it) so offensive? I'd say - let there be cure, so people could make informed decisions if they want to be cured or if they are happy the way they are.
Or did you react to the "antifeminist" idea that higher incidence of autism may be related to increasing average age of giving birth?
Sorry if I have offended you anyhow...
"I believe that there is a whole spectrum of intensity of autism or Asperger's syndrom manifestations. Therefore, what worked for you, or what you now think could work for you (based on your later post) may not work for other people."
-But that's exactly what I say in my later post.
"I am afraid that for every asperger who made it to professor of Spanish (or physics), there are many more who did not. "
-Not every neurotypical person does this either. :-) And definitely not everybody even wants to.
"I'd say - let there be cure, so people could make informed decisions if they want to be cured or if they are happy the way they are."
-For now, the only treatments that exist are profoundly barbaric. Besides, I honestly haven't met or read online (as I have been doing a lot) any autistics clamoring for a "cure." For myself, I do find the very idea of a "cure" offensive because I don't consider myself sick. Mostly, the people wo are clamoring for a cure are parents who want to make their children be more like themselves. Whether being like them is such a great thing is not a question they asked themselves.
The short answer to what I find offensive about the first comment in the thread is every word.
If I were this person's child, I would totally understand the desire to scream for 24 hours straight.
You haven't offended me in any way, but this person definitely did. "Coming out" about this is not easy and it's very discouraging when this is the first reaction you get.
----But that's exactly what I say in my later post.
But here you have blasted a person who has different opinion because you just suspected she may be more interested in shaping her child according to her taste than in helping her child (and other children with autism)?.. I understand I may be unable to fully understand your reaction because I did not have such bad experiences with people trying to reshape me, because my symptoms were milder in the first place, and I am sorry for being insensitive, but I do not dig your reaction to the first comment.
---Mostly, the people wo are clamoring for a cure are parents who want to make their children be more like themselves.
I probably will sound like one person we both dislike, but you are looking at that problem only from the child's perspective. Yes, there surely are parents who's main interest is (consciously or subconsciously) to shape an autistic child into a more comfortable mold. But there are many who's primary interest is in helping their child. And the last time I checked, helping the one's child is not even a question of choice, but parental responsibility. Leaving disorders (pardon me for not using some other word) completely untreated because later the child may decide she is happy this way is, in my opinion, dangerously close to leaving it up to the Lord for religious reasons. And, if anything, more research is needed to know where the border between things one should treat and the things one should adapt to is.
On a related note, this discussion inspired some weird thoughts... Suppose sexual orientation could be changed by some very simple means, like a pill, or a simple operation like vasectomy... Without side effects? It is interesting, how many would choose to use it, and how many will stay the way they are? How will the perception of homosexuality change in the society? Will it be considered more or less a disorder if it is "curable"?
"But here you have blasted a person who has different opinion because you just suspected she may be more interested in shaping her child according to her taste "
-That commenter is not on any part of the spectrum, from what I understand.
"Leaving disorders (pardon me for not using some other word) completely untreated because later the child may decide she is happy this way is, in my opinion, dangerously close to leaving it up to the Lord for religious reasons. "
-There is no "cure" for autism. The only treatments that exist are simply barbaric. I personally beelieve that if the helicopter mommies eased up on the poor children, that would be the most helpful thing they could do. Autism Speaks promotes the view of autism as an epidemic and a health crisis. An epidemic suggests that it might even be contagious in nature. Which is patently untrue. I strongly believe this wole hysteria is just aimed at selling more anti-depressants.
I don't insist that you (or anybody else) should find the first comment equally offensive. But I do. Every word in it enrages me. I thank god that this person is not my parent.
As for your last question, the only reason why people might have wanted to take such a pill is because they don't want to deal with hatred and discrimination any more. Homosexuality is not a problem, hatred is. That is what should be eliminated.
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