Sunday, July 25, 2010

In Their Own Words

I want to draw attention to another post made by Kerry Magro on the Autism Speaks blog. Mr. Magro, who apparently is interning for Autism Speaks and will be a senior at Seton Hall this coming year, outlines some of the challenges involved in obtaining “reasonable accommodations” in a college setting. During his description, he provides many helpful insights from his own experience of striving towards independence, with and without support.

Mr. Magro's post is straightforward, accurate and informative, which puts it in stark contrast to nearly all the other posts made on the Autism Speaks blog, including many posts made by non-autistic individuals under the banner of “In Their Own Words” (oh, the irony of it all). These other posts have dealt primarily with such matters as the challenge of being a parent to an autistic individual, the challenge of being the sibling of an autistic individual, the challenge of being an autism researcher working with mouse models, and the challenge of baking autism advocacy cookies. But when it comes to addressing the actual challenges and rewards of autism itself, that mantle is successfully assumed only when Autism Speaks resorts to that rarest of events, publishing the words that come straight from an autistic individual (oh, the doubled-back irony of it all).

It would be hard for me to overemphasize how much this culture can actually learn about autism simply by allowing autistic individuals to speak for themselves and in their own words. Hey, Autism Speaks, are you really listening?

Saturday, July 17, 2010

Shocking Words

In a certain sense I of course agree with the many responses given to my recent post that expressed extreme displeasure with that post's choice of words. The use of words such as “cure” and “eradication” to describe individuals and their characteristics is always offensive, insulting, and inexcusable. Count me as guilty. Express your outrage. It's a reasonable thing to do.

But of course I did not choose either those words or the target of those words idly. Ms. Stagliano, her supporters and Autism Speaks all routinely employ words such as “cure” and “eradication” to describe autistic individuals and their characteristics, and the application of those words against autistic individuals is no less offensive, insulting and outrageous than in any other instance. I only wish that those who are so quick to take umbrage at my remarks about Ms. Stagliano would be as equally quick to take umbrage when she and others apply such terms to autistic individuals. If that were to happen more frequently, I would gladly accept any humbling that is my due.

It is interesting to note that a similar course of events has already played out for the most part in the homosexual community. Forty to fifty years ago it was a routine practice to describe homosexuals as in need of a cure and to target their characteristics for eradication. Homosexual individuals quite rightly took offense to such terms and ideas, fought long and hard to overcome them, and today such phrases and efforts have all but disappeared from the culture. The few holdouts who continue to spew mindless invective against homosexuality are now widely recognized as being bigoted and narrow-minded; they are actively spoken out against, they are no longer tacitly approved. (And if someone were to suggest to these homophobic individuals that they were the ones in need of a cure and it was their intolerance that was in need of eradication, you can be sure it would be they and their supporters who would be the first to holler about being insulted and offended.)

If one wants to be treated with respect and dignity, then the place to begin is by treating others with respect and dignity—all others. This is a lesson the autism advocacy community is badly in need of learning, because the number one issue facing that community is its ongoing lack of respect and understanding for autistic individuals. The whole point of my original post was to impress upon the members of that community their need to treat autistic individuals with more acceptance and to see the situation more often from the perspective of autistic individuals. My rhetoric might seem a little too shocking and harsh at times, but if this culture is ever going to rise to the level of treating its autistic members with the dignity and respect they deserve, the autism advocacy community is going to have to be disturbed out of its currently offensive, insulting, and mindless ways. Maybe I go too far at times, but sometimes it's of more value to be a prod than to be polite.

Saturday, July 10, 2010

The Ugly Face of Autism

I agree with Kim Stagliano absolutely. Her latest post, in its entirety, would make an excellent choice for an Autism Speaks advertisement. All the essential ingredients are there:

  • A picture of a beautiful autistic child engaged in an interesting, meaningful and no doubt productive activity for her—clearly delighted to no end.
  • A hovering, disapproving parent describing the entire tableau as “pain,” bemoaning the family's autism fate to the entire world, and wishing for someone—anyone—to do something—anything—to bring this horrible ordeal to an end.

Yes, that captures the ugly face of autism in a nutshell, and Autism Speaks would do well to consider it for its next public service announcement. Now if we could only get Autism Speaks to sponsor some form of cure against the Ms. Staglianos of the world (it can be biomedical, pharmaceutical or behavioral—I really don't care) I might find myself supporting that organization's eradicating mission.

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.