Whose Planet Is It Anyway?

Monday, April 02, 2007

It's Not Just the Internet

There's a popular analogy that compares the use of the Internet by autistic people to the use of sign language by the Deaf. According to this view, the widespread online presence of autistics in the past few years has happened because the Internet made it possible for autistics to communicate as never before.

And to that I say: Nice catchy dramatic image, but it's not even close to what really happened.

Yes, the Internet is a wondrous tool that enables people worldwide who have common interests to get together and share ideas easily—but this is equally true for all interest groups. And yes, autistics often can communicate more effectively in writing than in speech, but many of us who grew up in the pre-Internet era had no problem expressing ourselves by means of a typewriter, or even a good old-fashioned pen and paper.

So why have thousands of autistic people joined forums and created blogs and other websites in the past few years? In a word: self-preservation. The rise of the Internet took place, coincidentally, at the same time when a very broad expansion of the diagnostic criteria for autism occurred. Before then, most people who today would be considered autistic were living in a state of blissful naiveté, entirely unaware that they soon would become targets of worldwide prejudice and discrimination.

The concept of the "autism spectrum" wasn't in the diagnostic parlance until 1994, when Asperger's and the other so-called spectrum classifications were added to the DSM-IV. Previously, the term "autism" had a much narrower meaning, was used much less often, and was applied mainly to nonverbal children. What this effectively meant was that, by fiat, a small group of psychologists in the early 1990s (whose pharmaceutical company sponsors no doubt had visions of a lucrative new drug market dancing in their heads) reclassified millions of people throughout the world from the "normal" category to the "mentally disordered" category.

But most of us didn't know it at the time. We were just going about our ordinary lives, working or attending school or raising families, like everyone else around us. We might have noticed that some things were harder for us than for our peers, while other things were easier, but we just chalked that up to natural variation and didn't give it much thought.

Two other ominous developments in the mid-1990s should have given us cause for concern, but we were ignorant of their possible implications for us. First, there was the ever-increasing use of genetic research to develop prenatal screening tests. Although the Down Syndrome prenatal test already had been in use for two decades, most people were not aware that hundreds of tests for other conditions were being developed. This was by design. Fundraising organizations kept their eugenic agenda very carefully hidden. I have to confess that I gave money in response to a solicitation for cystic fibrosis research, naively believing the claim that it would be used to develop gene therapy to cure suffering children. Within just a few years, however, 95 percent of fetuses identified with CF were being aborted—and the children featured in those fundraising ads all grew up without ever getting the promised genetic cure.

Another event that gave some of us a delayed wake-up call, several years afterward, was the genocide in Rwanda. Although two tribes in that country had lived peacefully together for generations, a sudden, intense propaganda campaign made the majority tribe turn violently against the minority. People happily slaughtered their neighbors and co-workers. In families where there had been inter-tribal marriages, some people even killed their own relatives. Women viciously hacked and beat to death little children who had been their kids' playmates, often in front of their kids, while still thinking of themselves as loving mothers the entire time. The rest of the world was so taken aback by this paroxysm of savagery that almost no effort was made to stop it. When it was over and Rwanda lay in ruins, most folks in other parts of the world just shook their heads in pity, feeling secure in the belief that it would never happen in their own countries. At the time, very few of us actually understood the lesson of what had happened there: No matter how completely integrated into the mainstream of society a minority group may be, all it takes is a well-crafted propaganda effort characterizing them as a devastating threat to society, and large numbers of otherwise decent and rational people will start clamoring for their extermination.

Although the Internet existed (albeit in a more limited form) in the late 1990s, most autistics just used it the same way everyone else did, for general information and mindless entertainment. It wasn't until the current decade began that the danger of our situation became apparent. By then, many autistic parents were being told by school officials that their children (whose behavior often was very similar to that of the parents at the same age) were mentally disordered and ought to be put in segregated classrooms. "Autism awareness" propaganda declared that very few autistics would ever be able to hold jobs, marry, or do anything productive (this blithely ignored the fact that many autistics already had jobs and families); that the existence of autistics was a huge burden to society; and that cure or "prevention" was imperative. Not surprisingly, in this climate of mass hysteria, large numbers of quack practitioners began peddling dangerous "treatments" to families with autistic children.

Then we began to see "disease control" agencies establishing mandatory registries of autistic citizens, all too reminiscent of the Nazi bureaucracies that kept registries of Jews. Genetic researchers and their funding groups started openly admitting that they sought a prenatal test for autism. Editors of several otherwise respectable journals saw nothing wrong with printing articles suggesting that autistic workers were undesirable and should not be hired. The ultimate goal has been stated very clearly by the most influential fundraising group, Autism Speaks: it is a world in which autism—that is, the global autistic population consisting of some 50 to 60 million human beings—is "a word for the history books."

And that's why autistic adults are blogging in record numbers. It's not because there's anything magical about the Internet that enables autistics to communicate. Rather, it's a response to the genocidal situation surrounding us. If we didn't have the Internet, many of us (myself included) would be frantically typing up fliers and making thousands of copies, putting them on front porches and car windshields and stapling them to telephone poles. We'd be holding meetings, organizing demonstrations, and waving banners on street corners. In short, we'd be doing all the same things that civil rights activists did before the Internet existed. There's no doubt that the Internet makes it much easier for us to organize and get ourselves heard without the personal risks and significant costs and difficulties of pre-Internet civil rights activism, but that is the nature of the medium itself, not anything unique to autistic self-expression. Autistic people are all over the Internet because, as Club 166 starkly (and accurately) put it in a recent post, silence equals death.

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  • Thanks, AB, for the link.

    I'm not one to see conspiracies behind everything, but I do feel that we are at a place in time in history when a lot of really "primitive" human instincts are being aided and abetted by modern scientific methods.

    Instincts such as the fear of the unknown and those who are "other". Instincts such as wanting to foster "the survival of the fittest", and defining the fittest very narrowly, as did Nazi hierarchy in WWII.

    I used to think that when Jews would say "Never Forget" regarding the Holocaust, that the saying was kind of strange. Who could ever forget such a shocking reminder of what man could do to each other? But increasingly we forget, deny, and don't teach the Holocaust.

    And autistics are killed by "well meaning" parents and "overworked" caregivers, shuffled aside in education and the workforce, and now researchers are searching for "socially acceptable" ways of eliminating autistics from society. And "our own" society (Autism Speaks), who one would think would be on our side, buys into this line of thinking hook, line, and sinker.

    Who will speak for autistics, if the ones organized "for their benefit" fail to do so?

    I wish we could come up with a simple saying, such as the "Silence=Death" that the gay community came up with. Something that immediately brings recognition and a higher profile for autistic adults. Something that shines a bright light on the collective humanity in the autism community. Something that is a cold slap in the face to those who espouse eradication of autistics.

    By Blogger Club 166, at 5:35 PM  

  • abfh:

    You have a dangerous mind...versus the plundering masses who swallow the propaganda without thinking (it seems to be the N.T. way), you see right through the B.S.

    I saw an autismspeaks advertisement on Arianna Huffingtons (Democratic politico in California) post and about puked. They are everywhere...

    I also visited the Holocaust museum and saw that it all began with one book. It just reiterates what you are saying.

    By Blogger Usethebrains Godgiveyou, at 7:58 AM  

  • Club 166: I agree with you that much of it is opportunism, rather than premeditated conspiracy, but it's ugly nonetheless.

    As for Autism Speaks, it never was "our own." It wanted to eliminate autistics from society from the get-go. The claim of being organized for our benefit is a pretense, a fraud. I don't know if you read the "Pearls before Swine" comic strip, but if so, you might enjoy a post I wrote last fall comparing Autism Speaks to the crocodiles.

    As for a simple saying -- I think we've made a good start with "neurodiversity," a word that clearly identifies the main issue.

    By Blogger abfh, at 8:24 AM  

  • Rose: Yes, they are everywhere. Arianna Huffington has been a strong supporter of the biomed crowd for several years.

    Although I haven't commented on your blog in a long time, I do admire the work you're doing with your students. I hope there are people like us everywhere, too, who see what is happening around us and who are working to change society.

    By Blogger abfh, at 8:30 AM  

  • Bollox

    I was using the internet before I was diagnosed, because I like it and found it useful, nothing to do with perceived threats.

    My Kingdom has been there since 1997 and I was not diagnosed till 1999

    By Blogger Larry Arnold PhD FRSA, at 9:15 AM  

  • Larry: Yes, many autistics were using the Internet in the 1990s because it was fun and useful, but very few were identifying as autistics online or writing about civil rights or disability rights issues -- that came later.

    By Blogger abfh, at 10:24 AM  

  • It was toward the beginning of 1999 that I started reading about autism on line and I got my dx later that year, however before that point I was writing about dyspraxia and dyslexia and disability rights in general

    It was only natural for me after my dx of that year to take up autistic advocacy however since I had been a disability activist long before that and none of the eugenic stuff is particularly new to me, I have seen it all before and been opposed to it a long time.

    People often forget that autistic advocacy is part of a larger movement of disability and civil rights advocacy and solidarity is essential. That is why the "aspie" supremacists worry me because I see some of the aspergian myths as much the same as the Nazi myths of racial origin(whoops is that Godwins law there.

    By Blogger Larry Arnold PhD FRSA, at 6:31 PM  

  • Being a letter writer kind of marked you as a little strange. After all, why would anyone write a letter when it was so much easier and expedient to simply communicate in person or by phone? Others were less likely to engage you or take you seriously.

    When the internet came along, it changed things; writing became acceptable again. Email and instant messaging brought something to the table we never had before: the ability to connect with large groups of people you might never have encountered before. Going online didn't make you strange; you were affording yourself of this unique opportunity. But for many of us, it was our prefered method of communication for other reasons.

    As someone who grew up in the pre-internet era, I can confidently say that the internet DID open up a world that never existed for me before.

    Thanks, ABFH. I know the point I addressed wasn't the main thrust of your article, but I wanted to address it anyway.

    By Blogger Chasmatazz, at 9:37 AM  

  • Chasmatazz: I was thinking more about such things as newsletters and posters in civil rights campaigns, but you're quite right that the invention of the telephone put autistics at a disadvantage in connecting with large groups of people and that the Internet has remedied that situation.

    One of my current projects is an essay about the history of autistic culture in Western civilization -- I hope you won't mind if I include this point in it!

    By Blogger abfh, at 1:40 PM  

  • I neither started using the Internet or started writing about autism because of the eugenics propaganda. That came later, and when I found out about it, I responded to it with the tools available to me. It takes me on average one month to post a letter and two months to make a phone call, so offline advocacy would not have been an option for me.

    By Blogger elmindreda, at 8:22 AM  

  • ABFH:

    You don't even have to ask.



    By Blogger Chasmatazz, at 8:51 AM  

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