Open Letter to a Publisher

Dear Unnamed Publisher:

One of your marketing people sent me an e-mail recently, offering to give me an advance copy of a "true story of autism" for my review.

I ought to have known better than to click on the "more info" link. After all, insanity as defined by Albert Einstein consists of doing the same thing over and over again, while expecting different results. And I've seen enough of the publishing industry's exploitation of autism so that the results of clicking on that link were all too predictable. Still, I had a tiny speck of hope that perhaps there might be something different this time—something other than the usual melodramatic litany of an agonizing disease with hellish symptoms, a puzzling and ever-worsening medical mystery, et cetera. That hope was, of course, promptly dashed.

No doubt stories like that are quite profitable for your company. You wouldn't be printing them otherwise. And of course, your readers would have no interest in a true story of an autistic person who was just as happy with his or her life as anyone else. They'd die of boredom reading about the very ordinary day I had yesterday: After work, I watered my ordinary suburban lawn for a few hours, pulled some weeds, bought a new pair of oven mitts, cooked dinner, and watched the first half of Monday Night Football.

Your shareholders probably would toss you out on your ear if you ever jeopardized their profits by considering the social implications of what you print. Like any other company, you're in business to make money, regardless of who gets trampled in the process. Why should you care if an autistic child gets excluded from school because the administrators, caught up in mass hysteria, are afraid to have him in their classrooms? It's none of your concern, is it, when an autistic job applicant is rejected because the hiring manager assumes that she is a tragic sufferer with hellish symptoms and would surely cost too much to accommodate? What does it matter to you if a landlord evicts an autistic tenant because of unfounded prejudices?

I'm sure that in a few more years, when the market for autism horror stories has been saturated, you'll cheerfully move on to whatever the next fad may be. You won't even give a moment's thought to the millions of people worldwide who will have to spend the rest of their lives struggling against the prejudices that you took part in creating. In fact, you probably stopped reading this letter several paragraphs ago because you decided that your time could be spent more profitably. There's always someone else to exploit, after all.

The Best of Times, The Worst of Times

I finished reading Unstrange Minds about three weeks ago, but I've only just now gotten around to writing a review of the book, in part because it took me some time to ponder the contradictions.

I'm not referring to factual contradictions. All of the historical and cultural information is meticulously researched, and its logical presentation supports Professor Grinker's conclusion that the recent increase in autism prevalence is due to a broader application of the diagnostic label, rather than an actual increase in the number of people with autistic traits.

When it comes to the personal views Grinker expresses, however, the book is a turbulent microcosm of society's ambivalent and conflicting attitudes toward the autistic population. In the introduction, Grinker frames the discussion in these paradoxical terms (p. 6):


"Autism is a terrible, lifelong disorder, but it's a better time than ever to be autistic."


As Grinker sees it, this is the best of times because our society has more understanding of neurological differences than ever before. Far more children are being identified as autistic, often at younger ages; and more services, special education classes, and vocational training programs are available for these children. Their parents are no longer being blamed by psychoanalysts for causing their autism by being neglectful or aloof. Most of the abusive institutions that once existed have been replaced by modern group homes. Better medications are available, and governments and nonprofit organizations are providing much more funding for research to improve our scientific knowledge about autism.

I'll acknowledge that these points are all true, in and of themselves. However, in the context of the prevailing cultural attitude that "autism is a terrible, lifelong disorder," one could also argue that it is the worst of times to be autistic. This is how I see it:

Far more children are now victims of society's prejudices against autism than ever before, taught from earliest childhood to think of themselves as disordered and defective. Their parents often are driven to panic and despair by a widespread mass hysteria that declares their very existence to be a devastating tragedy. They may be placed in unsuitable special education programs that do not meet their needs, and they may be given only the most basic vocational training. Although many institutions have been shut down, some still exist, and a group home can be just as isolating for residents who may be shunned or taunted when they venture outside.

The myth of Refrigerator Mother has been replaced by other myths that are equally damaging to families, such as the urban legend about vaccines causing autism, which has spawned an entire industry of conscienceless quacks who prey on parents by convincing them that they must immediately buy all sorts of bogus treatments to save their child from a terrible fate. Behaviorists also put enormous pressure on parents to go into debt to pay for intensive therapies that are touted as vital for "early intervention," although the science isn't there to support those claims. Although psychiatric medications have been improved in recent years, they also have been prescribed much more broadly and indiscriminately to autistic children who may not need them and who may not be able to tell anyone about painful or distressing side effects. And yes, there is more autism research these days, but much of it consists of eugenics research to develop a prenatal test.

I'm not sure if Grinker made a conscious choice to gloss over these controversial topics to avoid alienating potential buyers of his book or if he just hasn't given some of them much thought.

As a cultural anthropologist, Grinker is well aware that disorders are socially constructed. Indeed, the book explicitly states as much in several places, including this passage (p. 11):


"...autism, like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it..."


Grinker gives us many interesting glimpses into different cultural constructions of autism, from a South African tribal culture where autistic children often are thought to be cursed and are taken to witch doctors, to the status-conscious Korean cities where children with developmental disabilities are largely ignored, to the families in India who prefer a diagnosis of mental retardation because there is so much stigma and ignorance surrounding autism.

But when he describes his life with his autistic daughter, Isabel, it's not at all clear that Grinker understands the extent to which his own attitudes have been shaped by our society's prejudices. Clearly he is a loving father who dotes on Isabel, even taking her to visit France when she develops a strong interest in Monet's garden. However, he seems to assume without question that Isabel will never leave home or marry (p. 24) even though he proudly describes her school successes, her extensive knowledge of wildlife, and her ambition to become a zookeeper (p. 300).

As mentioned by Autism Diva in a recent post, Grinker already has acknowledged that he erred in failing to interview autistic adults when he researched the book, so I won't belabor that point. It appears that, after the book went to press, Grinker became more aware of autistic self-advocacy and the extent to which his culturally-based assumptions about autistic people might be in need of some adjustment.

It just goes to show that none of us, however well educated, can step outside the constraints of our own cultural assumptions and analyze them objectively, no matter how much we believe we can.

If you've bought Unstrange Minds, or are about to buy it (and it's a good read, especially for those who are interested in history and the social sciences), I suggest that you buckle up your mental seat belt. You're in for a bumpy but fascinating ride.

Prejudice (Undiagnosed)

Barbarian dreams of book-burning


Ballastexistenz, who collects books by autistic authors, recently commented on a book entitled The Feeling's Unmutual, which has the subtitle Growing Up With Asperger Syndrome (Undiagnosed). She wrote that she liked the book because it reflected the author's genuine feelings (albeit of confusion and self-loathing) rather than being "doctored to the stereotypes."

I have great respect for Ballastexistenz (and if she ever writes a book, I'll be first in line to buy it), but I have to differ with her view of autie-biographies in general. I find the whole genre patronizing and exploitative, whether or not the stereotypes are exaggerated. As I see it, there's not much difference between autie-biographies and, looking back a century or so, the abominable genre of poetry and short stories written in dialect by African-American authors who described the humble joys of their cotton-pickin' lives. Perhaps the authors of those works were indeed happy with their lives (although I doubt it) but the very fact of their publication reinforced the stereotypes, whether or not that was the authors' intent.

I followed this link from the Ballastexistenz site to an online bookstore that sells The Feeling's Unmutual. One of the reviewers on that site wrote that the author's

"fascinating and compulsively readable book offers a powerful insight into fears and horrors more chilling than anything portrayed in fiction, and into his courage in coping with them."

Urk. Bleah. What an image for the consumption of the unwashed masses—a poor pitiful autistic sufferer coping heroically with the fearsome, horrible, and chilling contents of his disordered thoughts. No doubt many of the readers will come away feeling charitably inspired to make generous donations to CAN and NAAR's eugenic abortion research in order to save all future autistics from the awful pain of existing.

You want fears and horrors more chilling than anything portrayed in fiction? Try discovering that you're part of a minority group targeted for an international genocide, as described by elmindreda on her blog. She writes:

"It is a feeling that I find very difficult to convey to most people, since they cannot for example visit the websites of organisations that explain what a terrible burden people like them are to families and society in general, but that there is hope that doctors will soon be able to prevent more people like them from being born."

Again, I don't intend any criticism of Ballastexistenz for reading or recommending The Feeling's Unmutual. However, I lack both the patience and the intestinal fortitude to slog through too much of that sort of stuff. Until recently, I had one book by an autistic author on my bookshelf, Temple Grandin's Thinking in Pictures, which was a gift from my stepmother. When I found out Grandin was in favor of eugenics to remove nonverbal autistics from the human gene pool, I tossed her book into a box in my basement. The only reason it didn't go straight in the trash is because I was raised to believe that people who destroy books are barbarians.

But I'm starting to have second thoughts about that after seeing the vast amount of anti-autistic propaganda being churned out by the mass media. I have to confess, I would not be at all upset to see an enormous bonfire containing almost every book that was ever printed about autism, with the DSM-IV used as kindling. I'm having barbarian dreams of book-burning.

And when I see a book with a subtitle like Growing Up With Asperger Syndrome (Undiagnosed), I just have to wonder why so many aspies are meekly surrendering to society's negative labels. Almost all of us over age 30 grew up undiagnosed, for the simple reason that Asperger Syndrome didn't exist before the psychologists put it into the DSM-IV in 1994. There were other names for us—nerds, geeks, bookworms—which weren't particularly nice either, but at least we could recognize the bullying for what it was. Many of us eventually found careers that suited our interests and were accepted by society as healthy and intelligent people.

Now that the psychologists have, in effect, deprived millions of us of our civil rights by fiat, there are far too many aspies who lack any semblance of self-respect or willingness to question authority. They are obediently sewing that scarlet A, that yellow star, onto their sackcloth and ashes while they go about loudly bewailing their youthful lack of understanding of their disorders and deficits. Frankly, it makes me sick.

This is what I have to say to autistics who think of themselves as courageously coping sufferers who grew up with Asperger Syndrome (undiagnosed): I may not have the credentials of the so-called psychological experts, but I damn sure know how to diagnose prejudice when I see it.