Thursday, July 8, 2010

The Cup Half Full

I want to comment quickly on two positive Internet posts that have appeared today in two very negative Internet locations.

The first post is a brief essay entitled Coming Out: Autism in College, written by an autistic individual, Kerry Magro. It appears under the heading In Their Own Words on the Autism Speaks blog, which is something of a doubled-back irony since it is an extremely rare event for the In Their Own Words section to actually incorporate the words of autistic individuals. (Autism Speaks seems to think that phrase means non-autistic individuals speaking for autistic individuals, which although par for the course for Autism Speaks, is both illogical and offensive under the heading In Their Own Words.) And Mr. Magro's post demonstrates quite effectively why it is such a terribly bad idea to have non-autistic individuals speaking for autistic individuals, because Mr. Magro—speaking quite capably for himself—demonstrates that autistic individuals—when allowed to speak for themselves—can be uncommonly articulate, insightful and courageous. Addressing both the challenges and the triumphs of his condition with a precision an outsider could never dream to muster, Mr. Magro manages to expose the relentless pity- and fear-mongering of Autism Speaks as little more than an outrageous lie.

I don't always agree with what autistic individuals have to say. I undoubtedly would not agree with everything Mr. Magro might have to say. In some instances (Jonathan Mitchell comes readily to mind), I might not agree with much of anything at all. But I can't stress strongly enough how important it is that we actually hear those autistic voices and that we provide autistic individuals with every possible opportunity to speak for themselves. It is an atrocity—an offensive atrocity—to have non-autistic individuals speaking as mouthpieces on behalf of autistic individuals. I would note that Mr. Magro is described as a staffer for Autism Speaks. He might want to consider questioning his organization about why that organization seems so intent on putting words into his own mouth, when Mr. Magro is so clearly capable of speaking eloquently and rightfully for himself.

The second positive post coming from a negative location arrives courtesy of Mark Blaxill and the Age of Autism web site. In his lengthy report New Autism Consortium Study Proves (Again) that Inherited Genes Don't Cause Autism, Mr. Blaxill outlines the many reasons for his skepticism regarding the recently publicized report in Nature regarding autism genetics. Mr. Blaxill has done this kind of thing before (and I have commented upon it), and as hard as it might be to believe, he's actually getting better at it. This most recent post is detailed, well researched, sanely reasoned, and even manages to avoid (for the most part) Mr. Blaxill's rather unfortunate and common tendency to descend into ad hominem and other lazy forms of argument. Although I wouldn't go so far as to say his use of logic and scientific analysis rises to the standards of say a Michelle Dawson, it does come within a reasonable shouting distance, and it makes a telling contrast to the commentary supplied for instance at Respectful Insolence, a blog for which I have a much greater philosophical affinity in general, but which seems, at least in this instance, to be willing to take traditional scientists at their word instead of looking more carefully at their data. (A skeptic who is skeptical only of opposing points of view is not really a skeptic).

It's not lost on me of course that this is Mark Blaxill we're talking about. It remains utterly dumbfounding to me that someone who can be so thorough and insightful in criticizing a report on autism genetics can also be so willfully dense when it comes to analyzing his own perspective. For instance I shudder to imagine what gobs of illogical and non-scientific drivel will most likely ooze out of Mr. Blaxill's forthcoming book The Age of Autism: Mercury, Medicine, and a Manmade Epidemic (co-authored with Dan Olmsted). Or to consider it another way, if we could only take Mr. Blaxill's post and substitute the word “vaccines” for “genes” and the phrase “environmental toxins” for “copy number variants,” I am sure we would have the perfect outline for an accurate criticism of Mr. Blaxill's own form of autism science.

As I have suggested in other places, what both Mr. Blaxill and many autism research scientists need to do is take a step back from their entrenched positions and find out what they actually have in common. Because in point of fact everyone is beginning from the same place. Neuroscientists assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for brain dysfunction—and get essentially nowhere. Genetic researchers assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for genetic defects—and get essentially nowhere. Mr. Blaxill and his supporters assume that autism is the evidence of something gone horribly wrong and begin looking all over the place for environmental toxins—and get essentially nowhere. My question is, how long do we allow these groups to get essentially nowhere before we begin wondering if perhaps autism is not the evidence of something gone horribly wrong?

Which brings us back to Mr. Magro and his post at Autism Speaks. It is clear from his words (his own words, not the words of others) that it has been impressed upon him quite frequently that his autism is the evidence of something gone horribly wrong. But there remains something defiant in Mr. Magro's words (his own words, not the words of others). There is a defiance in his content, in his tone, in his execution. It is almost as if Mr. Magro is forcing us to address that question, what can possibly be so horribly wrong about an individual who is so hopeful, insightful, courageous and eloquent? And the answer of course is obvious: there is not one damn thing wrong with that individual.

Perhaps it is time to consider autism as the evidence of something gone remarkably right.


jonathan said...

Thanks for the plug, Alan. However, not having lived Mr. Magro's life, nor mine, nor any autistic individual's yourself included since you apparently don't have autism but are the parent of someone who has not yet reached adulthood (or probably adolescence) so you can't possibly know what life is like for those of us who are 21 plus years of age and how we have lived and why autism might be something terribly gone wrong.

Also, since you might welcome criticism of autism speaks. I wonder what you think of the autism in the workplace videos dog and pony show that AS puts on, yet they don't have one person with autism as a paid employee in their organization, not even as a minimum wage file clerk with a job coach. Nor have they ever helped a person with autism gain employment, except possibly helping Michelle Dawson improve her CV so she might get a paid research position even if Mottron does not pay her anything. though she clearly detests this organization that she accepts funding from.

I wonder why you and the other autism speaks haters have never criticized autism speaks for this reason. I sure believe they deserve villification for not having secured employment for any autistic persons yet acting like they care about the issue.

jonathan said...

Also, one other thought. Aren't you throwing stones from a house made of fragile glass. Seems to me you are a nonautistic individual trying to speak for autistic people and telling us we are fine the way we are, when you don't have the condition yourself?

Alan Griswold said...

I'll try to explain the obvious to Jonathan:

I do not (and cannot) speak for others, whether they are autistic or not. I speak only for myself. At the same time, I frequently speak about others. So does Jonathan. So does just about everyone. That's normal human discourse, I fail to see anything remarkable about it. Normal human discourse leads to agreements and disagreements—so what?

Autism Speaks, on the other hand, routinely engages in, encourages, and condones the practice of non-autistic individuals inventing words and putting them into the mouths of autistic individuals, or into the mouth of a concocted bogeyman called Autism. That practice is despicable, and is appropriate only in the sense that it reveals Autism Speaks for what it truly is.

No self-respecting group of individuals allows others to speak for it. Homosexuals no longer tolerate non-homosexuals speaking for them. Women no longer tolerate men speaking for them. Even parents cannot properly speak for their children. Parents may be required at times to speak on their children's behalf, but that's not really the same thing. Indeed, one of the primary duties of parents is to help their children speak for themselves. That duty is not abrogated for the parents of autistic children.

Or in case I have not yet made myself perfectly clear, let me explain the contrast to Jonathan in this way: I agree with almost nothing that Jonathan has to say about his autism, but I would fight to the bitter end for his right and opportunity to say it.

Katja said...
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Anonymous said...

I think I disagree slightly with your take on the genetics paper. I don't have the expertise to evaluate its merits, but my understanding is that the researchers in question were searching for evidence of genetic abnormalities, and that a genetic abnormality can not in or of itself be harmful. Whether it is considered harmful, neutral, or beneficial depends on circumstance, and is more so a value-based judgment on the part of someone observing the end results. From my perspective, I don't think that it would follow from the uncontested presence of a genetic abnormality that Down Syndrome, for example, is a sign of something gone horribly wrong.