A recent Facebook meme (where you’re supposed to cut and paste something and put it on your status) was about autism. Anyone else notice a variation in the message?
Some people said they prayed (or hoped) for a cure. I could get behind that. Others said people with autism don’t want a cure, they want acceptance.
The latter were either parents of autistic children, or people who were clearly close to the parent of an autistic child (clear because the person was thanking them in the comments and providing this information). So I felt disinclined to do any questioning.
Acceptance is better than rejection. But really, we’re not supposed to want a cure? Has autism become something we’re supposed to embrace? Just another lovely little variation under the umbrella of human diversity? Please, no.
This stirs up the same disturbance I got from a lengthy questionnaire from Cedars-Sinai . It was market research to gauge how a parent would feel about them using leftover samples (stuff that would otherwise get thrown away) to perform research to cure various theoretical (I think) hereditary diseases. I answered yes, yes, yes, for pages and pages. I’d let you keep whatever you wanted; I’d let you do whatever you wanted with it; yes it would be nice if you told me your results but even if you don’t, I won’t hold it against you. Of course, do whatever you can to find a cure it or at least screen.
The disturbance was because they even feel they need to ask. Apparently there are people who don’t want diseases cured; who don’t want an in utero screening method developed so that even if they don’t want to know, others who want to know, can.
Thanks to modern technology, I know a lot about the child I’m carrying: his gender, his chromosomes, his skeletal structure. One thing I can’t find out is whether he will have autism. I am unequivocally certain that I don’t want him to. And if he does, I am just as certain that I want the world to crawl uphill over broken glass if needed to find a way to fix it.
And if he does — my god, am I expected to find a way to feel like it’s a good thing? Please, no. It’s bad enough that women with breast cancer are told to believe the disease improves them. It’s bad enough there are best-selling books telling us if we wish for things hard enough we get them. We can’t give one inch more ground to the insanity of magical thinking.
More and more diseases and behavioral abnormalities are being treated this way. Normalizing “attention deficit disorder” meant that any kid who showed the slightest hint of individualism, creativity, or accelerated ability could be medicated down to the lowest common denominator in public screwel, for instance.
There are behavioral anomalies, and developmental anomalies, for which a cure should be sought. And you’re right, “magical thinking” is a real problem. I’d say more on it but I’m very tempted to rant about loonies I met growing up, and they all, uniformly, came from one specific side of the political spectrum that now happens to be in charge.
Comment by web — January 20, 2010 @ 3:12 pm
Nah, Web, it’s just that the other side is more likely to blame/credit one’s standing with Jesus for everything, rather than New Agey ideas like The Secret.
Both liberals and conservatives seem equally vulnerable to BS about positive thinking. They just come at it a bit differently.
Comment by stone — January 20, 2010 @ 3:23 pm
Freddie wrote on this issue a while back and I think had some good insights.
Autism is a disorder
Difference/disorder
We need a term for high-functioning autism.
Comment by trumwill — January 20, 2010 @ 3:53 pm
Yeah, what ever happened to feeling sorry for people? If my kid has autism, or if I get cancer, I want a nice plush window seat on board the gripe train. I don’t want to have to mentally engineer my common sense out of existence so I can talk about what a *gift* my plight is, to make others feel better. They should feel better by thinking about how they’re not me.
Comment by stone — January 20, 2010 @ 4:11 pm
“If my kid has autism, or if I get cancer, I want a nice plush window seat on board the gripe train.”
Sounds like you already have a plush window seat on the gripe train.
Comment by DaveinHackensack — January 20, 2010 @ 4:14 pm
Damn right on all counts, Sheila. And while we’re at it, why don’t we make post-mortem organ donation an “opt-out” rather than an “opt-in”? I’m not being facetious; it strikes me as the height of selfishness to want your own discarded bodily tissue to rot rather than be used for research or the healthcare benefits of another person.
Comment by Transplanted Lawyer — January 20, 2010 @ 5:05 pm
Part of the problem is that Autism has been viewed as “hard-wired” by the time it’s diagnosed (crazy loonies like Jenny McCarthy who think vaccines cause it and we should just make all kids get polio and measles notwithstanding). In general, most other groups who have “developmental differences” in terms of relationships with other people* generally hate the idea that there is a “treatment” or “cure” for them.
There’s also a major difference between “functional” and “nonfunctional” autistics, and the oddly rare “misunderstood savant” types. Methods of teaching each how to deal with other people are different. An ability to catch the developmental bit, and successfully prevent/limit the impact of the autistic development, would be a godsend to most parents and most likely improve the quality of those kids’ lives.
The danger, of course, is in overdiagnosis. There’ve been people who posit that all self-described “nerds” in any given field have some low-grade autism that allows them to focus on and relate to their chosen subject matter (in essence, “idiot savant lite”). Similarly as I pointed to earlier, there’s a very wrong movement to diagnose every kid on the planet with ADD/ADHD; I’ve lost count of the number of very, very smart kids whose only crime was being bored out of their minds waiting for the class (which always moves at the pace of the slowest idiot) to catch up with them, and whose parents were told that they needed to be put on drugs for “attention deficit” when they were merely BORED.
By the same token, “autism” seems to be getting overdiagnosed these days, in much the same way as ADD/ADHD; other conditions got “relabeled” to be part of them, and an overenthusiasm for labeling kids has hit. After all, parents react better to being told their kid has Autism or ADHD than being told their kid is either (A) just slow to develop (everyone wants their kids to be friggin’ supergeniuses; this explains a lot of the overdiagnoses of “low grade” autism or “autism-like” diagnoses) or (B) a troublemaker because the parents are unfit parents who haven’t taught the kid how to friggin’ behave himself.
*Yes, I’m dancing around the wording for a reason, and it’s to not allow things to get into THAT discussion.
Comment by web — January 20, 2010 @ 5:28 pm
TL, have you read “Nudge”? They recommend that in there. It’s a really interesting book. I’ve read about a third of it so far. It’s one of those books that you can read one chapter at a time.
Comment by trumwill — January 20, 2010 @ 7:30 pm
Diagnosing children with autism or ADHD can make them eligible for all sorts of special assistance in school. This creates an incentive for over-diagnosis.
Comment by Peter — January 20, 2010 @ 8:42 pm
I’ve not read that book yet, but as it happens I just finished “Roughing It” and was looking for something new to read. Fortuitous timing!
Comment by Transplanted Lawyer — January 20, 2010 @ 9:00 pm
TL wrote:
…it strikes me as the height of selfishness to want your own discarded bodily tissue to rot rather than be used for research or the healthcare benefits of another person.
I’m always amazed at how people knowingly give their bodies to UT’s “body farm”.
http://video.nationalgeographic.com/video/player/science/health-human-body-sci/human-body/body-farm-sci.html
Comment by kirk — January 21, 2010 @ 12:04 am
…I know a lot about the child I’m carrying…
I have got to start reading the filed by lines at the top of posts. I thought we just learned something very interesting about Trumwill or Webguy.
Stone’s correct about magical thinking spanning the political spectrum: there really is no difference between praying real hard to Jesus to give you stuff and praying real hard to the Universe.
A big push for autism is not a disease comes from self-diagnosed autists on the web who, if they actually have autism, have so mild a case that they can communicate. The retard autists are strapped down somewhere so they don’t bash their brains out headbanging. Those people don’t talk about they have a difference, not a disorder. Cuz they don’t talk.
Comment by rob — January 21, 2010 @ 7:21 am
One more thing, for incurable disorders, the choice now isn’t a between a cure and and acceptance. The options are being accepted or being a paraiah. The problem with ‘acceptance’ is people start acting as if they believe the propaganda, and it hurts research into treatments and prevention.
I don’t think any parents of autists actually believe the acceptance jargon. The ones who think vaccines caused the autism never get on tv and say, “I just want to thank the pharmaceutical companies for giving my family the gift of an autistic child.”
Comment by rob — January 21, 2010 @ 7:29 am
Rob, the parents I’m thinking of have kids who seem to fall in between the two categories. I see their other Facebook updates — they mention difficulties they have with the kids’ autism, such as not being able to go to Disneyland because of overstimulation, or kid being thrown out of activity center because of well-meaning but inappropriate behavior. They don’t seem like they really want second helpings of this. Yet somehow someone convinced them to post *against* a cure.
Comment by stone — January 21, 2010 @ 8:11 am
“Stone’s correct about magical thinking spanning the political spectrum: there really is no difference between praying real hard to Jesus to give you stuff and praying real hard to the Universe.”
Well there is one pretty significant difference - one of those ways of thinking helped create the greatest societies the world has ever seen, and the other is currently in the process of destroying them.
Comment by john — January 22, 2010 @ 11:16 am
John,
Prayers, even Christian prayers, have been around for a long-ass time. Great civilizations are far younger. Great societies were not created by prayers to Jesus. QED. Crap, that was easy.
Granted that argument does break down with the Church of England. It is pretty obvious to anyone with a lick of sense that the world would be a fantastic place if everyone were an Episcopalian.
Stone,
The women (I assume these people are mostly women, right?) who post against a cure, do they reject pharmaceutical treatment for their own children?
Apparently there are people who don’t want diseases cured; who don’t want an in utero screening method developed so that even if they don’t want to know, others who want to know, can.
Are those people on the left, right or basically apathetic? I can see rightwingers opposing in utero screening because it will increase the abortion rate. And it would, Downs syndrome is almost gone.
Comment by rob — January 22, 2010 @ 12:32 pm
It is pretty obvious to anyone with a lick of sense that the world would be a fantastic place if everyone were an Episcopalian.
Right on!
Comment by trumwill — January 22, 2010 @ 1:26 pm