Today has been designated as the first World Autism Awareness Day. You'll likely hear a lot about the topic today; CNN is devoting a day to a lot of coverage (unfortunately, some portion of it is going to be crap, for reasons I'll explore in a moment).
The image above is representative--like most awareness ribbons and images--of a view on autism. You have likely seen the puzzle ribbon. It implies that autism is a puzzle and that persons with autism are puzzle pieces. This is a pretty externalized view of autism. Ilse and I much prefer designs like the mobius rainbow above. They emphasize the neurodiversity of autistic persons, and the mobius imagery says a great deal about integrating autism into the spectrum of things that happen to peoples' brains.
As I've said in other posts, our son Bam-Bam has been diagnosed with a condition that falls on the autistic spectrum. The diagnosis is pervasive developmental disorder-not otherwise specified, aka PDD-NOS. I'm picky about the language I choose when I characterize Bam-Bam in a serious way; the "autism" label is applied to a broad spectrum of diagnoses, and that spectrum widened considerably in the 1990s when the diagnostic classifications were changed.
That change, along with an increase in awareness and improvements in screening and diagnosis, led to a dramatic increase in the incidence of autism. The figure of 1 person in 150 has been bandied about as fact; I'm not an epidemiologist and I have no particular axe to grind with that figure. I do have an axe to grind with characterizations of an "epidemic", and with attempts to explain the incidence that do not acknowledge the massive increase in reported incidence that have resulted from the above-noted factors. I am being kind when I say that those characterizations are deeply misguided and not rooted in science or a valid reasoning process. To be further kind, they are best understood as springing from the well of the aggrieved, or of those who would take advantage of the aggrieved. There's no shortage of this.
The other key takeaway here is that there are a lot of clinical diagnoses, ranging from crippling to inconvenient, that constitute autism. The autism label is not a single-size affair.
Another autism-related misconception is that vaccines cause autism. Senator McCain, who is not a scientist, caused a brief stir when he made a fairly strong statement to the effect that there is strong evidence of a causative connection (I'm still being kind--McCain actually said there's strong evidence that vaccines cause autism). He showed a spark of intellect when he backpedalled, presumably having received further scientific advice from person not best characterized as quacks.
There is no causal connection between vaccines and autism. Period. A parade of large and well-controlled studies has thoroughly dispelled the notions that preservatives in vaccines or vaccines themselves cause autism. As even antivaccinationists (who are, seriously, completely insane--they truly do not give a flying fuck if your child or any child dies of measles or pertussis, and actually deny that vaccines have improved public health, putting them in precisely the same category of mental health and reasoning ability as Holocaust deniers) acknowledge, the reported incidence of autism did not decrease after their pet preservative, thimerosol, was removed almost entirely from vaccines given to children in 2001/2002.
The evidence that people cite on vaccines and autism--usually in a frantic tone that kicks you in the nads, accompanied by a shrill invocation that your dumb ass would understand this if you had a child with autism--amounts to this: "I noticed that my child was autistic after s/he had his/her vaccines." Call bullshit on those who push a connection between vaccines and autism; remind them that it's precisely as demonstrable that diapers, teddy bears, and pacifiers cause autism. And piss on news organizations that insist on presenting this as a balanced and reasonable debate with two sides; it's as factually controversial as the Earth orbiting the Sun.
Another common misconception is that diets can cure autism. Autism tends toward comorbidity with a number of other conditions, many of which are gastrointestinal (there's an extremely high co-morbidity with celiac disease in particular). There's a tremendous amount of quackery related to this, and while it's great to help a kid with celiac disease or some other GI condition feel better with dietary improvements, it is a grave disservice to persons with autism to pretend that a gluten-free or casein-free diet cures autism.
In fact, let's just leave aside the notion that anything can cure autism, because the topic is depressing as hell. The best recent scientific work on autism is focused on genetics; the science of that, the mutability of genes that appear to be related to autism, is way too complex for me to discuss here, and my fundamental knowledge of genetics (unlike my fundamental understanding of medicine) doesn't give me the underpinning I need to cleanly sort out what's going on there.
Also related is the notion that maybe autism is a diverse condition, rather than a disorder, and that the best thing we can do for persons with autism is help them integrate, with reasonable comfort for all concerned, into a civilization that is not well suited to their integration. There are significant communities of adult autistics devoted to precisely this, and to helping the rest of us understand that they're not disordered, they're just different. My best hope for Bam-Bam is that he will function at a level that allows him to enjoy such peerage.
So, CNN, which is doing a day of "comprehensive coverage" on autism. Allow me to summarize: Larry King's guests this evening are Jenny McCarthy, who apparently went to the Google Medical School, and trumpets that her autistic child has been cured through his casein-free, gluten-free diet (it's plain from the evidence that she makes available that the child's tummy is feeling better, but remains as autistic as he ever was, and is developing along a path consistent with an autism diagnosis), and David Kirby, a muckraking charlatan (and dear friend of wackjob Arianna Huffington) whose money-making book trumpeting a connection between vaccines and autism has been thoroughly discredited (which doesn't stop him from manipulating evidence, misquoting, backpedalling, changing his pitch, hortating, and outright lying). Can't we just keep this kind of shit on Fox News, where it belongs?
Finally: I'm not a big fan of Pay Attention To My Cause Day. But as many of you know, this is a topic about which I've grown increasingly agitated of late. And I won't deny my ability to seize an opportunity. I have mixed feelings about the utility of Autism Awareness Day; there's so much misleading and downright harmful information out there, and it's hard for people to sort out, especially when the issue has no particular significance to them. Thanks for staying with my humble effort to help with the sorting.
And fuck you, David Kirby.
Update (6:15 PM): Holy shit, my wife blogs. Who the fuck knew?
Thanks also to my buddy Whispers, the astoundingly awesome Kimmah, and especially the suavely understated, Patrick Macnee-like, and very nearly famous bDr for the shoutouts.
Where the fuck are you, Sasha?
1 week ago