Money Speaks

No, this post isn't about the salaries of Autism Speaks' executives, although that interesting detail does seem to get mentioned a lot. Rather, it's about the online discussion of why autistic people don't like Autism Speaks, which—after more than three years—finally drew a response from Alison Singer on just what she was thinking when she made that infamous statement about driving off the George Washington Bridge with her autistic daughter Jodie in the car:

From the Autism Science Foundation blog:


The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did…

…After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options.


Assuming for the sake of argument that her explanation was sincere and that she genuinely was distraught about the lack of adequate schools, I'd say that she chose a very unproductive way of addressing that concern. Whatever one may think about the likelihood of a prenatal test or other eugenic nastiness resulting from the genetic research funded by Autism Speaks and ASF, it's indisputable that these genetic studies do nothing whatsoever to combat the social barriers faced by today's autistic citizens and our families. They will not improve educational opportunities for Jodie—or any other child like her—one iota. They are counterproductive because they soak up funds that might otherwise be put toward improving education and services.

Earlier this year, ASAN issued a statement calling on organizations that fund autism research, such as Autism Speaks and ASF, to show their commitment to improving the lives of autistic people by shifting their research funds away from genetic studies and toward projects that yield practical benefits. In short, these organizations are being asked to put their money where their mouth is, rather than just vaguely claiming that they are somehow advancing our futures. When it comes to judging their intentions, money speaks a lot louder than words.

Alison Tepper Singer Grows Up

Be careful what you wish for
'Cause you just might get it
You just might get it...

— The Pussycat Dolls, When I Grow Up


Last week, Alison Tepper Singer resigned from Autism Speaks, leaving a high-profile position as the organization's executive vice president of communications and awareness, because of what she describes as a difference of opinion regarding vaccines. She claims that she left voluntarily, standing on principle and defending the cause of science, because she was opposed to wasting money on vaccine-related research after many studies had shown no link between vaccines and autism.

Perhaps she did indeed choose to leave, or perhaps—in light of her history of strong support for genetic research—the Wrights decided to give her the boot so that they could attract more donations from those in the anti-vaccine camp. To put it more bluntly, the Wrights appear to be trying to bamboozle the anti-vaccine folks by making a few vague promises of research into vaccine safety, while their eugenic steamroller continues merrily on its way. I expect we'll never know the whole truth, but it seems likely that her departure may not be as voluntary as she asserts.

Here's the lesson that I hope she takes away from all this:

When you work in the pity industry, for an organization that is so totally devoid of ethics that it sees nothing wrong with using fantasies of child murder for marketing purposes, then you shouldn't be surprised when—after getting more public attention than you ever really wanted to have—you end up getting thrown under the bus just like your kid.

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.

Social Interaction and Cure

I wrote a post in September about defining curebie-ism, in which I said that a parent's attitude toward his or her child determines whether that parent is a curebie, rather than the choice of any particular treatment or therapy. At the conclusion of the post, I wrote, "If you care whether your autistic child thinks you are a curebie—you're not one."

Wade Rankin responded by pointing out that all parents have to make choices that will change their children's development in one way or another, regardless of whether the children approve. At first glance, that seems like a sensible enough point, and one that is true whether or not a child is autistic. When you stop a toddler from wandering away, for instance, you don't worry about whether you're stifling her adventurous spirit. Parents are constantly shaping their children's personalities by making everyday decisions; it would be impossible to do otherwise.

I gave the question some more thought after reading Tera's recent post about the attitude shown by Alison Tepper Singer (of Autism Every Day infamy) toward her daughter and the idea of cure. Singer opined that her daughter had no abilities and that there was no reason to be concerned about squashing the child's natural personality. That's curebie-ism at its worst: a total lack of acknowledgment that an autistic child even has any feelings and thoughts that are worthy of concern.

Most parents who talk about "curing" their children are not in that category. They're not trying to change their kid into a completely different person, they say; rather, they just want the kid to have more ability to communicate and interact with society. While that's a reasonable goal in itself, sometimes it seems as if these parents overlook the fact that their autistic children already are interacting with society. Wade's post, for example, describes how he imagines his son, if "cured," might behave:

Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

Wade, I have to ask: do you really believe that autistic teenagers have to be "cured" before they are capable of interacting with friends and complaining about their parents? Because if that's what you believe, I take it you haven't looked at the Aspies for Freedom (AFF) forum recently, or any of the other websites where thousands of autistic teens are venting—quite vociferously indeed—about how society and their parents have treated them. And they're not "cured" by any stretch of the imagination.

Before I go any farther on this topic, I want to make it clear that I do not share the attitudes I'm about to discuss. My parents always respected my individuality and treated me as a worthwhile human being; I have no grudges against them whatsoever. I also don't intend this post to be a personal rant against Wade or any other parent who has expressed a desire to "cure" a child, but I feel that it's necessary to bring certain unfortunate facts to their attention.

In the decade since the Asperger diagnosis came into common use, large numbers of autistic youths—mostly male—have grown up feeling profoundly alienated from society. Many of them spent their childhood sitting in segregated classrooms, swallowing daily doses of behavior control meds, going from one therapy to another, and hearing themselves described as tragically defective sufferers whose existence should have been prevented by means of prenatal testing. They are full of rage and despair at a society that they believe has not only rejected them utterly, but has also turned their parents against them. This is not the typical teenage angst that many of us remember, nor is it an irrational creation of disordered minds. It is a corrosive, soul-crushing despair that has grown out of actual experiences.

The following poem by "kai," recently posted on the AFF site, illustrates the raw depth of such feelings:

ME

it's hard for me to sleep...i fear my dreams
it's hard for me to live..i fear my life
i fear feeling too much
or at all
even the happy feelings bind with strife
and all the joy is tainted with a sting
and all the light is faded with a gray
all the drugs are based in an addiction
and hopes that they could take the pain away
and if somebody feels we call it crazy
and if i feel i tell myself to stop
if i dream i wake up kind of shaky
and if i live i tell myself to not
then i run somewhere i haven't been yet
and promise things will turn out right this time
take another pill to make it better
and find myself inside this paradigm
everywhere i go i build with dreams
and the dreams are everything i couldn't be
those dreams become a prison that i hide in
and that prison that i hide in
becomes me

Amy and Gareth Nelson, the administrators of AFF, have repeatedly stated that they do not advocate, and will not condone, any violent or illegal acts. But sometimes their efforts remind me of the story of the little Dutch boy with his finger in the dike, trying to hold back a flood. They had to talk one guy out of a suicide terrorist attack on the Judge Rotenberg Center. Someone else posted that he was thinking about immolating himself to protest society's abuse of autistics, like the Buddhist monks who committed suicide during the Vietnam War. And this was posted just yesterday, in reference to what could be done to stop eugenic abortion:

A bit of C4, some matches for the data, and some .50 cal bullets for the researchers will do the trick.

Frankly, I'm surprised that there hasn't been any terrorism committed by autistics. If any other minority group were this close to genocide, there's no doubt a "liberation army" would consider itself morally justified in fighting back by any means. Although autistics are often considered to be more analytical and less emotional than the general population, we do have a broad range of personality types, and not all of us have a natural inclination toward calmly seeking peaceful solutions.

I don't advocate or condone violence either, and I really hope it doesn't happen. (Edited for more emphasis: If anyone reading this post has been thinking about committing a terrorist act, DON'T DO IT.) But we need to face the fact that we now have a social minority underclass of angry youths with little or no hope for the future, who grew up being treated as damaged goods and who are likely to remain unemployed because of discrimination; and historically, that always has been a recipe for disaster.

Wade—I don't know anything about your family situation, and I am not claiming that this is how your son feels. I wouldn't presume to suggest that, and for both his sake and yours, I hope it isn't so. However, under the circumstances, it's likely that when he starts complaining about his life to his friends, you will not find that to be an occasion for "grinning from ear to ear."

I recommend reading the short story "Poor Little Black Fellow," written by Langston Hughes and published in 1934 as part of the collection The Ways of White Folks. It's about a young African-American man who travels to Paris with the well-meaning white couple who raised him. For the first time in his life, he finds himself in an environment where he is seen as a human being like everyone else, rather than as a "Negro." When he decides to stay in Paris, his foster parents are dismayed, believing him to be ungrateful for failing to appreciate their efforts to help him deal with his disadvantages and make the best of his status in American society.

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!)

Sick. Sick. Sick. Sick.

Excuse my echolalia.

Not only has Autism Speaks shown no remorse whatsoever for condoning child murder in that abominable video, now the perpetrator—er, producer—of the Autism Every Day video, Lauren Thierry, has given an interview in which she makes the appalling claim that fantasies of child murder are perfectly normal for parents of autistic kids. This is what Thierry had to say when the interviewer asked her to comment on the widespread outrage and disgust that gave rise to suggestions that Alison Tepper Singer's children should be removed from her custody:

If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. "If this is not your reality, then God bless you," she says.

Ballastexistenz wrote that she wasn't even going to dignify that idea with a response, and indeed, it's so outrageous it doesn't deserve one. But if you look at parent blogs such as Autism Vox, you'll find comments along the lines of "despicable" and "How DARE she try to speak for me?" from pissed-off autism parents and grandparents, including Mike McCarron, who wrote that "Moms that love their children... don’t deserve to be typecast as anything but good Moms."

As if we needed any more evidence of Thierry's complete lack of anything resembling human decency, she also called Alison Tepper Singer "gutsy and courageous." Most of us would choose other words to describe a woman who would say, right in front of her young daughter, that she had thought about killing her daughter but decided not to do it because her other child needed her. Words like "sick" and "evil" come to mind, as well as quite a few other four-letter words.

Once again, Autism Speaks has demonstrated that it does not speak for anyone except bigots, child abusers, and eugenicists.

Hate Speech Every Day

Before I start ranting about the literally murderous attitude expressed in that godawful video from Autism Speaks (and no, I'm not providing a link, as I wouldn't want to be responsible for anyone feeling compelled to wash their brain out with soap), I'm going to make a true confession here: I wasn't always the easiest kid to take care of, either. I wandered off, played in traffic, and had no sense of danger. I climbed trees, large rocks, the furniture, and anything else that was climbable. I thought it was great fun to sneak into a highway bridge construction site and walk across a steel girder high above a river. I also didn't see anything wrong with floating out to the middle of said river on two boards—in February, when the water was ice cold—and, after being rescued by worried neighbors, cheerfully telling another neighbor that the person he thought he had seen walking on the water was Jesus Christ on a raft. Then I got quite indignant when my mom disagreed with my opinion that I hadn't done anything wrong and grounded me for a month.

But you know what? I did manage to grow up and become a reasonably well-adjusted adult. Naturally. Without benefit of psychiatric drugs, behavioral programs, or quacky alternative medicine bullshit therapies to cleanse my body of its toxins. Kids grow up. Duh.

Parenting is hard work every day, no matter what sort of neurology a kid has. In olden times, people understood this simple fact. That's where the expression "it takes a village to raise a child" came from. Others in the community were always available to help parents with an autistic child who wandered into dangerous places, or an excessively social child who ditched school to hang out with friends, or a child with any kind of problem. (And by the way, there is no such thing as a perfect child who never has any problems.)

Nowadays, most parents don't have a village to rely on when they need help with their kids. Instead of having a large extended family close by, parents often live in cities or new suburban developments, far from anyone they know. They have to contend with judgmental neighbors, inadequate schools, financial pressures, an environment that is often stressful and dangerous to children, and the what's-in-it-for-me attitude of the modern world. Rather than understanding that these are structural problems in our society, parents often blame themselves or their kids because life always seems so hard. They get burned out, frustrated, angry, and depressed.

At that point, they become easy targets for the propaganda of hate groups such as Autism Speaks, which exhorts them to blame their child's autism for everything that is wrong with their lives. They get the message that, if only they donate enough to research (and the fact that it is actually eugenics research is never mentioned), the yellow brick road will lead them to the Promised Land and all their troubles will magically melt away.

And if that doesn't work, well, as the video suggests, there's always murder.

This is what I have to say to the Wrights, Alison Wack-Job Singer, and their viciously manipulative collaborators: If a mother drives off a bridge with her child after watching that video, their blood will be on your hands.