Conversations

Reflecting on Mark Stairwalt's post about autism as a family reunion, I have to confess that I can't wholly relate to his well-crafted analogy from my own experience because my family never has held large gatherings. But I had what might be called a mini-reunion when I had lunch with my mom at a nearby restaurant on Thursday, catching up on the latest family gossip about who cheated on whom, and so forth.

We also briefly talked about the proposed changes in the autism diagnostic criteria. I mentioned that I thought we would see more changes in the future as researchers identify biomarkers, such as in this study showing a significant delay in auditory processing.

"That's interesting," said my mom, lowering her voice almost to a whisper as she confided, "I never thought of myself as autistic, but I do seem to have a delay in hearing and understanding speech."

I replied that it was only to be expected that family members would have somewhat similar traits, and then the conversation moved on to a more general discussion of genetics.

After reading the New York Times article by Roy Richard Grinker on the diagnostic changes, I've been picturing similar conversations taking place in many families. I'm very pleased to see how far Grinker's views have evolved in just the three years since the release of his book Unstrange Minds, which I reviewed on this blog. I noted in my review that although Grinker, a cultural anthropologist, is very well aware of the socially constructed nature of autism, he nevertheless made a number of unfounded assumptions about his daughter based entirely on the prevailing stereotypes in Western culture. Now, just a few years later, those assumptions—such as that his daughter would never leave home or marry—are nowhere to be seen, replaced by this enlightened observation: "Narrow diagnostic categories do not help us understand the way a person will develop over time."

Of course, as with all improvements in society's perception of a minority group, some of its more privileged members have made clear that they would rather keep the stereotypes and prejudice because they can't deal with the prospect of losing what they perceive as their elite status within the group. In Bev's post Angry Aspies, Please Go Away, she calls out two of the usual suspects by name, including (no surprise there) Michael John Carley, who is up to his usual divisive tricks. Clay's blog entry on the topic mentions another culprit. This was only to be expected; and as Clay accurately states, the autistic community needs to have this conversation. Still, it's odious when people make clear that their idea of dealing with stigma is to deflect it onto somebody else instead of working to end it altogether; and I sincerely hope that those who are displaying such attitudes will either grow up or, as Bev says, just go away.


Edit: More posts written from an anti-elitist perspective can be found at LB/RB, Ballastexistenz, Reports from a Resident Alien, Cat in a Dog's World, Journeys with Autism, Uncle Sam's Cabin, The Standard Review, Life with Joey, I'm Somewhere Else, Susan Senator's Blog, Autism Street, Heatherbabes, Homo Autistic, Astrid's Journal, A Time Will Come... and AspieWeb.

Carley Fighting Autism

More news from the Quisling-watch front: The autistic community's most notorious collaborator, Michael John Carley, who apparently has never seen a speaker's fee or a scrap of publicity that he wouldn't stand up on his hind legs and beg for, will be giving a presentation Monday evening as part of an autism web conference series for "parents, teachers and professionals." There's no mention of autistics in the intended audience, which is not at all surprising, given the fact that the sponsor is a group called "Moms Fighting Autism."

Here's the URL:

momsfightingautism.com/teleseminar

As they say in the courtroom: Res ipsa loquitur—the thing speaks for itself.

On Becoming a Bitch

There isn't much that merits a response in this comment by Michael John Carley on my recent guest post on Wrong Planet. But on this New Year's Eve, as I reflect on the Spirit of Blogging Past, there's one point that could use a little clarification—I've never explained my reasons for choosing my screen name.

Before I started writing this blog, I had different online identities that generally reflected a positive and, sometimes, a ridiculously optimistic outlook on the world. For the most part, I went through my days in blissful ignorance of how much evil was still lurking out there. I really believed that the human species had evolved far enough so that we were only a few years away from a rational, civilized society where war and other horrors would disappear forever.

Then two things happened that completely knocked my naive worldview for a loop. The first was 9/11. The second was the anti-autism witch hunt and discovering that I belonged to a minority group that had been targeted for eugenic extermination. Both of these events had approximately the same emotional effect on me. Every morning when I woke up, for a moment the world seemed to be the same as always. Then I would remember, and I just wanted to curl up somewhere and hide, thinking: This can't be real.

And then I decided to fight back.

I chose my screen name to show attitude. The word "bitch" often has been used to dehumanize assertive women by suggesting that they are little more than yelping mutts, incapable of intelligent human conversation. I intended to make it very clear that I would not be silenced by such tactics: So you don't like what this uppity autistic woman has to say? Well, too bad for you, buddy, because I'm going to give you uppity times ten. Deal with it.

Of course, the oppressive language used by Autism Speaks and its minions is not as straightforward in its bigotry as a curse word like "bitch." Instead, when they claim that autistics are incapable of contributing productive opinions to the social discourse, they suggest that it's because we are tragic victims of our neurology. When we express ourselves on matters of public interest, we can't really have thought about the issues and developed intelligent opinions; rather, we are unable to comprehend the issues and are simply reacting out of anxiety, depression, or some other unfortunate psychological impairment.

It comes as no surprise to see dismissive statements like this from Autism Speaks; after all, their very name indicates that they believe autistics are incapable of speaking for ourselves. But to see such language used by a man who claims to represent the interests of autistic self-advocates is very troubling indeed.

The Lessons of Autism Awareness

In September of this year, Autism Speaks started a new program to encourage preschool teachers to talk with parents if they notice signs of autism in their students. According to Autism Speaks' executive vice-president Alison Tepper Singer, its purpose is to "ensure that kids who may have a developmental delay get the services they need as early as possible." Unfortunately, the reality does not always match the description.

I have a four-year-old nephew who started preschool in September. He is a sweet kid and very curious and intelligent, but he has some difficulty understanding and following spoken directions. It wasn't long before the teachers identified him as having autistic characteristics.

Did the teachers start a conversation about how they could better meet his needs? Did their increased awareness result in more services being provided to my nephew in their school? Well, no. What actually happened was that my sister was given two days' notice to remove him from the school. He had not been destructive or violent in any way, but the school apparently did not want to have any child with the scarlet "A" on its premises.

After looking into the available options, my sister enrolled him in a special-education preschool where he receives speech and occupational therapy. He seems happy in his new school, and I expect the therapy will be helpful, so it may work out all right. Still, there is something very wrong with our society when a young child's introduction to preschool turns out to be a firsthand lesson in the meaning of segregation.


More on Autism Speaks and Alison Tepper Singer: I've written a guest post on Wrong Planet about Singer's close relationship with Michael John Carley of GRASP, who circulated an e-mail yesterday asking autistics and others to send letters praising Singer to Autism Speaks' president Mark Roithmayr. My advice to the autistic community: Steer clear of GRASP and Carley's collaborationist scheming.

Endorsement

Back in 2006, when Michael John Carley of GRASP collaborated (in more than one sense of the word) with Alison Tepper Singer in composing so-called "articles of understanding," I wrote a blog post mocking his naive foolishness in giving the benefit of the doubt to our mortal enemy, Autism Speaks.

Now it's become apparent that Carley had a significant personal financial interest in sucking up to Autism Speaks and that I was, in fact, the naive one for giving Carley the benefit of the doubt as to his motives. In a promotional e-mail recently sent to GRASP members, Carley announced that he has written a book that is due to be released in a few weeks. He bragged about his "unbelievable advance reviews," profusely thanked the professionals who wrote them, and provided a link to these reviews on Amazon.com. While reading through them, I noticed this endorsement:


"Michael John Carley is an articulate and passionate advocate for people with Asperger's Syndrome. His engaging book offers a thoughtful and creative roadmap for people with Aspergers and their loved ones."

--Mark Roithmayr, President, Autism Speaks


Evidently, not only did Carley willingly accept this "unbelievable" endorsement—he was very pleased to get it. No doubt Autism Speaks will be of great help to him in marketing his book to the curebies. It looks like he's getting repaid quite handsomely for writing that article two years ago.

By way of contrast, I'm reminded of a brief exchange that occurred in the last Democratic presidential debate, on the subject of what to do with endorsements received from anti-Semites and other bigots. Barack Obama said that he denounced the bigotry. Hillary Clinton argued that she went farther by rejecting the endorsement. In response to that, Obama told Clinton that he didn't see much of a difference between those words and that if she thought there was, he would both reject and denounce.

That's what an ethical person would do if he got endorsed by haters who openly admit that they seek to eradicate a minority group. That's what anyone with a shred of decency would do.
But I suspect we'll all be snowboarding in hell before we see Carley reject and denounce Roithmayr's endorsement.

Articles of Tasty Prey

The comic strip Pearls Before Swine features a wacky assortment of animal characters, including a group of crocodiles with impaired hunting skills. Instead of catching their meat the old-fashioned way, they concoct elaborate schemes to convince their "zeeba" prey (the crocs aren't very good spellers, either) that they are nice, friendly neighbors and would never dream of eating any "zeeba" who might come over to visit.



I'm reminded of certain articles of understanding recently perpetrated in the autistic community. Here's the comic strip version:

The crocodiles all got together, formed a nonprofit group called Zeebas Speak, and created public service ads declaring that the tragic existence of large numbers of zebras was an unsustainable burden to the environment and that more predation would be in the zebras' best interest. Somehow the crocs managed to persuade an earnest but overly credulous group of zebras, who called themselves the Prey Animal Partnership (PAP), to have a friendly dialogue about the use of the word "kill" and to exchange the following articles of understanding about it:


PAP, and the Word "Kill"

When we discovered that we were prey animals, we had no idea how many different viewpoints there were in the world of predation. And these conflicts are probably a good thing, for in the grand scheme of things, we still know very little about all this predation stuff. We want the debates to be less divisive so that we don't hurt the feelings of well-meaning crocs.

Many of us believe that all the zebras in our community are part of the same herd and should not be separated. On the other side of the debate are those who believe that the slower and weaker zebras should be split out from the herd and eaten. Splitters use the word "kill" believing that slowness is a terrible thing to happen to a zebra, whereas being a zebra who can keep up with the herd is believed to be not so terrible.

The authors of the Crocodile Manual of Prey, Fourth Edition (CMP-IV) describe several categories of prey animals. But we believe the descriptions in the CMP-IV can't be taken into consideration with 100 percent accuracy. After all, there are many different opinions about predation among biologists, and some slow and weak zebras can be quite content with their lives.

The crocodiles also have potentially traumatizing burdens: hunger, deteriorating marriages, long and difficult hunts. It's probably very traumatic for a hungry croc to be lectured on the wrongness of killing a young zebra. But almost every one of our folks admits feeling unwanted to some degree when a well-meaning croc tells them they hope to make a good tasty kill. We are all going to have to be very flexible, what with all the suffering that everyone in the predation community is enduring. Parallel stories of coping, meanwhile, will help.

Signed by prey animals Larry, Carley, and Moe.


Zeebas Speak: "Kill" is Not a Four-Letter Word

At the far end of the herd we often find lower functioning zeebas who cannot run fast enough to escape predators, while at the other end there are zeebas who struggle with other issues. When we at Zeebas Speak use the word "kill," we are most often focused on the tasty little morsels we can catch.

** offstage whispers **

"Mmm... tender juicy young zeeba..."
"Bob! Quit drooling!"

The pain of these poor weak little zeebas is heartbreaking. We do not use the word "kill" to insult other zeebas. We use it because we hope that one day, the weakest zeebas will no longer have to struggle every day in their world and will know a different, pain-free existence as part of our world.

(Handwritten note by crocs in margin: Hee hee! We gonna digest em! Tee hee hee!)

At Zeebas Speak, we want to bring a voice to all struggling zeebas. Our goal is to do this by funding new research on ways of culling the herd. In fact, in our last round of grants, we funded several projects focused on high functioning zeebas. We know that such zeebas have different needs than the lower functioning ones, but when it comes to predation, we all need more options and new opportunities.

Signed with paw prints by crocs.

(oo, lookit what big claws we got! The better to hug you with, my dears!)