Whose Planet Is It Anyway?

Roses

2010-05-31T12:22:00.004-04:00

When I wrote a post last month about pruning my rosebushes, Clay commented that he'd like to see another photo when they came into bloom. All the cold wet weather in the northeastern United States this year has been good for the plants, whatever else we might have to say about it. The roses are blooming quite nicely:

I've been reflecting on how much our society's understanding of neurodiversity, like my rose garden, has grown over the past five years. At the end of 2004, shortly before I started blogging, typing "neurodiversity" into a search engine yielded very few results. Finding a new self-advocate website or a parent site that wasn't doom and gloom was like discovering an oasis in a vast scorching desert of intolerance.

At that time Kathleen Seidel had just recently set up neurodiversity.com and was busily working on her collection of links, but there weren't many positive sites for her to add. Amy and Gareth Nelson had a forum for parents on Aspies for Freedom, which was also a new site, and were trying to get a constructive dialogue started between autistic rights activists and parents. One of the parents who joined that forum in early 2005 was Kevin Leitch, the Autism Hub's founder. Dave Seidel later took over as administrator of the Hub, with his helpful sidekick HJ, contributing a huge amount of time and energy for which they deserve recognition.

The Hub took a lot of criticism over the years for having an angry tone, frequent arguments that were often less than constructive, too much emphasis on anti-quackery blogging at the expense of other important issues, and lack of effective action to prevent bullying by various individuals and factions. All of these things did indeed happen, and some other annoying stuff besides, as to which I was not blameless and don't claim to be.

But the Hub was also a wildly successful online diversity seminar, quite possibly one of the most successful in history. Its participants and readers came away with their assumptions challenged and their understanding of others' perspectives broadened. After encountering the Hub, many readers became inspired to start their own pro-neurodiversity websites and to work toward improving conditions for autistic people in their communities.

The mainstream media started to notice what was going on. At first there were only a few scattered articles suggesting that the neurodiversity movement was an odd little fringe group. The event that really got their attention was the Ransom Notes protest, described in detail here, which was a successful effort in December 2007 by Hub bloggers and others organized by the Autistic Self Advocacy Network to shut down a very nasty billboard advertising campaign that was comparing autistic children to kidnap victims.

Journalists writing about autism politics soon began interviewing neurodiversity proponents on a regular basis, having now recognized that they were dealing with a fast-growing civil rights movement. Politicians took notice when self-advocates gave testimony before legislative committees and agencies, which led to autistics being appointed to policymaking positions with autism commissions and other entities. Local autism societies made more efforts to ensure self-advocate participation in their leadership. Researchers gave more consideration to the ethical concerns and practical needs within the autistic community.

The implosion of the Autism Hub, although it marks the end of an exciting time when the blogs were at the forefront of a major cultural shift, was not a defeat for autistic civil rights or for the concept of neurodiversity. On the contrary, it's now clear that we won the first battle. We made people understand that they were looking at human beings, not at monsters or changelings. We did an effective job of consciousness-raising in the autistic community.

This blog, in particular, has accomplished everything that I set out to do with it five years ago. Now the time has come, as I wrote in early April, to focus on the less dramatic changes that need to be made—the development of effective educational programs and support structures and employment regulations to ensure that every autistic person can be an equal participant in our society.

To everyone mentioned above, and to the many people I haven't mentioned in this post who also took part in laying the groundwork for a better future, I leave you with a bouquet of virtual roses and my deepest gratitude as I post my last entry here. My best wishes to you all.

Autistic Involvement in Research

2010-05-04T16:32:00.004-04:00

I'm reposting the following announcement from AASPIRE, a research initiative that seeks to involve autistic people as equals and to take into account the views of the autistic community when making decisions about projects. AASPIRE is conducting a new study about healthcare inequities. More details below.

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults. The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

*encourage the inclusion of autistic adults in matters which directly affect them;

*include autistic adults as equal partners in research about autism;

*answer research questions that are considered relevant by the autistic community;

*use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can:

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

Displacing a bit of aggression

2010-04-26T09:26:00.003-04:00

One of the tasks on my spring cleaning list was to cut back some ridiculously overgrown rosebushes behind my deck, which had sprawled out over the concrete walkway. Because I am seriously phobic about power tools, I used a small pair of hand shears to do the whole job. It took a long time, but at least it was a more productive way of dealing with feelings of frustration than getting into useless arguments with trollish types on the Internet. Here's what the bushes look like now; I didn't try to cut them evenly across the top because they grow so fast that they wouldn't stay like that anyway.

The reason they needed so much pruning was because they grew to about twice the size that the catalog said they would, and I suspect that's not even their full growth. That will teach me to do independent research in the future, rather than impulsively ordering plants because they have pretty catalog pictures. They do look good when they're in bloom, though, so I suppose I can't complain too much about the extra maintenance.

I have been enjoying the spring weather. This past winter was so dark and dreary that it just seemed to go on forever. As I commented on Clay's blog in March, on a gloomy, cold, damp afternoon while I was on the highway in southeastern Ohio going toward Wheeling, West Virginia, I noticed a car with the license plate "BE SUNNY," as if the owner might be praying for a reprieve from winter's curse, but without having that prayer answered. Today is another cloudy and chilly day; but at least the winter is finally over, so, as with the roses, I can't complain too much.

Supporting Local Autism Societies

2010-04-05T12:22:00.003-04:00

The Autism Society of Southeastern Ohio will be holding a benefit concert on Friday, April 24, 2009. The proceeds will be used in accordance with the group's mission statement, which provides that it is "committed to increasing opportunities by raising public awareness, outreach, education, collaboration, and community events." If you live in this area, please consider attending the fundraiser; and if you are in another part of the country, keep in mind that your local autism society also depends on events such as this to raise money to provide services and assistance to families and autistic adults and to promote inclusion and acceptance. Autism societies typically receive only small amounts of corporate donations.

Battle Fatigue

2010-04-02T09:53:00.002-04:00

Regular readers of my blog will have noticed that I've been posting less often for the past several months. At first I thought my lack of interest in blogging might have been caused by seasonal depression over the long, gloomy winter. But it's been sunny and warm in my area all week; the birds are chirping merrily, the daffodils are blooming, and the grass is looking much greener; and now I feel, if anything, even less inclined to blog. For now, I just want to get out and enjoy the beautiful weather and be part of the real world, far away from all the pointless bickering that has been going on in the online autistic community.

I had a conversation last year with a friend who described autistic rights bloggers as "always at the barricades." That observation struck me as very accurate. We've had so many enemies to confront over the years that we have become hypervigilant, always looking for the next threat. And if we don't have a real enemy at close range, we're just as likely to lob virtual Molotov cocktails at each other.

That level of combativeness might at one time have been necessary, in the sense in which Malcolm X used the word; but it is not sustainable, either for an individual or for a community. Supporters of autistic civil rights, within the broader landscape of disability rights, now exist in sufficient numbers so that we can and should shift the focus away from Internet wars and toward the less exciting—but far more important—work of making the constructive real-life changes that we need to see in society.

As of now, this blog is on hiatus. When I come across general announcements that may be of interest to my readers I'll continue to repost them, such as the information about the Campaign for Disability Employment that I posted last week. I may write original articles on occasion, mainly about social and cultural issues, if I feel inspired to do so. There will be no more Molotov cocktail entries, though. I'll decide whether to return to posting more regularly after I've had a good long time to decompress and to consider what might be done with this blog in the future.

Wishing all of my readers a good spring, with plenty of time to enjoy the outdoors, and for those in the Southern Hemisphere a pleasant autumn.

Senate Needs to Confirm Ne'eman

2010-03-28T10:08:00.005-04:00

In the wake of the long difficult struggle over health care reform, a large number of President Obama's nominees for administration positions remain in limbo because of holds placed on their confirmation by various senators. The rules of procedure in the Senate allow one lone senator to place such a hold on a presidential nominee, anonymously and for any reason or, sometimes, no reason at all. As reported by Reuters, the White House recently stated that President Obama has a total of 217 nominees pending before the Senate, and 34 of them have been pending for more than six months. Expressing his frustration with this situation, the president announced yesterday that he intends to place some of his nominees in their positions by means of recess appointments, which allow him to avoid the confirmation process by appointing nominees on an interim basis while the Senate is not in session.

It is perhaps not surprising that in this contentious political landscape, the appointment of Ari Ne'eman, founder of the Autistic Self Advocacy Network, to the National Council on Disability (NCD) has been delayed by means of an anonymous hold. It is, however, disappointing to many people in the self-advocate community and the broader disability rights community, who appreciate his tireless work for inclusion and equality of all people with disabilities in society. His record of accomplishment includes advocating for community services and supports to keep people with significant support needs in their homes and out of institutions; for federal legislation to protect students from abuse in their schools; for stronger laws against employment discrimination to better protect autistics and other workers who may experience discrimination because of a disability; and many other public policy issues that fall within the mandate of NCD to guarantee equal opportunity for all individuals with disabilities and to promote full integration into society.

Under the circumstances, Ne'eman was not able to be interviewed for an article in yesterday's New York Times about the hold on his appointment. The article begins by stating that many families with autistic members have positive feelings about his nomination as the first autistic person to serve on the council. Lee Grossman, director of the Autism Society of America, suggests in the article that any disagreement over autism advocacy priorities "may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living." Grossman goes on to say, "We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee."

It is to be hoped that the situation will be resolved without much delay and that Ari Ne'eman will be able to take his position soon.

Campaign for Disability Employment

2010-03-25T09:17:00.004-04:00

I'm reposting a message sent out by the Campaign for Disability Employment, an initiative funded by the Office of Disability Employment Policy at the U.S. Department of Labor, which provides resources to assist employers in recruiting, retaining, and advancing qualified employees with disabilities. The site also has information for workers and young people with disabilities, as well as family and educators. It is a collaborative effort among business and disability advocacy organizations.

Work is fundamental to identity; it offers purpose and the opportunity to lead an independent, self-directed life for all people, including people with disabilities. That’s why we’d like to ask for your support of the Campaign for Disability Employment – a new collaborative effort among several leading disability and business organizations to promote positive employment outcomes for people with disabilities.

The Campaign’s messages and products are framed around the theme of “What Can YOU Do?” In that spirit, here are a few things YOU can do to help promote its messages among people with disabilities:

Post a link to the What Can YOU Do? Web site on your organization’s Web site. For instructions on how to do so, click on “Link to Us” at the bottom of the site.

Feature the Campaign in your organization’s member publication. A quick and easy way to do this is to use one of the Campaign’s drop-in articles. Alternatively, or in addition, you could send an e-blast about the Campaign to your members. In this e-blast, encourage them to share their job skills and talents through the What Can YOU Do? Web site’s micro-blog feature.

Spread the word about the Campaign through your organization’s social media activities. The Campaign offers timely and fresh content for updates on Facebook, Twitter, LinkedIn and other social media outlets. As part of this, encourage your members to become a “fan” of the Campaign for Disability Employment on Facebook and join its network on LinkedIn as a way to stay abreast of disability employment issues.

Print and distribute Campaign materials. The What Can YOU Do? Outreach Toolkit features a variety of fact sheets, posters and other downloadable outreach tools.

View and share the Campaign’s “I Can” PSA!

Thanks in advance for supporting the Campaign for Disability Employment. Working together, we can further the important message that at work, it’s what people CAN do that matters!

Melting Down an Autism Stereotype

2010-03-18T09:17:00.004-04:00

Image: Three Mile Island nuclear power plant

By now, I expect we've all seen plenty of articles, books, and other media depicting the "autistic meltdown," wherein a slight change in routine supposedly triggers some kind of massive brain short-circuit and an instant eruption of violent rage. This image, which a few years ago was found mainly among the haters at FAAAS and other similar bigots, is now being plastered all over the public consciousness by mainstream authors such as Jodi Picoult in her recently released novel House Rules.

The inevitable result is widespread discrimination, of course, when hiring managers and other decision-makers start looking upon autistics as walking nuclear disasters who might explode at any moment. If any other minority group had to contend with a hugely damaging stereotype like this, you can be sure they'd be screaming bloody murder about it. But the autistic community has done very little to oppose it; rather, many of us are continuing to use the word in routine conversation, perhaps trying to redefine it a bit around the edges, but taking for granted that it really does refer to something unique to autistics.

However, there's no scientific evidence to support that belief, no matter how the word might be defined. Nowhere in the diagnostic criteria does anything about "meltdowns" appear. Brain imaging studies have not identified structural differences that would account for them. As far as I know, there haven't even been any research studies—with appropriate controls for the subjects' baseline level of stress and other relevant factors—establishing whether the frequency of "meltdowns" is any different among autistics than among the general population. (If you know of any such studies, please post a link in my comments.) In short, we're talking about a stereotype that is based on nothing more than anecdotal stories.

Of course, I'm not arguing that autistic people don't have unpleasant reactions to stress and overload. Certainly we do. We're only human, after all. But what I'm disputing is the idea that "meltdowns" are something intrinsic to autism, rather than a consequence of what chaoticidealism accurately describes as an "underlying, dangerously-high stress level." What I think happens, in many cases, is that the stress of living in an autistic-unfriendly environment builds up over time; and then the blame for the resulting "meltdowns" ends up being wrongly attributed to some sort of mysterious autistic brain cooties, rather than being placed where it belongs—on the detrimental situation that created the stress.

So let's start recognizing and acting in our own best interest, people. If we want equal opportunity in the schools and workplaces, we're not going to get there by meekly letting ourselves be described in terms that cause school administrators and employers to see every autistic person as a threat to public safety. And if we want accommodations to make our environment more comfortable and reduce our stress levels so that we can be more productive at school and work, we're not going to get those, either, if every time we react badly to a stressful situation it's just presumed to be the way autistic people naturally behave regardless of the circumstances.

Crossposted to Shift Journal.

Robison Squeaks

2010-03-10T10:08:00.001-05:00

Autistic author John Elder Robison has agreed to serve on an advisory board for Autism Speaks. Yes, the same organization that repeatedly makes videos comparing autistic children to dead or kidnapped children; that openly declares its goal to "eradicate" the autistic population; that funds causation research to develop a prenatal test; and that pays bloated executive salaries while allotting only four percent of its budget to family services.

Robison says on his blog that he wants to make a difference in how Autism Speaks allocates its research funds. He plans to advocate for the organization to change its funding priorities in the direction of "work that can lead to better lives for today's autistic population."

Good luck with that, buddy. I'm picturing a little rubber duckie bobbing around on the ocean in front of the Titanic. He can do all the squeaking he likes, but the only thing that's going to change the ship's trajectory is when it finally hits the iceberg and goes down.

Judge Rotenberg Center Investigated

2010-03-03T10:29:00.009-05:00

Cannons on display in Sharpsburg, Maryland.

In response to a joint letter from disability rights organizations, the Civil Rights Division of the U.S. Department of Justice has opened an investigation of the Judge Rotenberg Center, a Massachusetts institution that is infamous for its use of electric shock and other practices widely condemned by disability and human rights advocates. Many efforts have been made to shut the place down under state law, but without success. Now that the "big guns" of a Federal civil rights investigation have been brought out, maybe we'll finally get somewhere; I'm cautiously optimistic.

More articles about the Judge Rotenberg Center investigation can be found at the Boston Herald, the Boston Globe, Mother Jones, WWJ Newsradio 950, WHDH Channel 7, Left Brain/Right Brain, Fox News Boston, WTOV Channel 9, UPI, the Washington Post, the Denver Post, KSTP Channel 5, the Keene Sentinel, Autist's Corner, and Disability Rights Oregon.

Conversations

2010-02-13T13:03:00.008-05:00

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.

Arthur Caplan's Rhetorical Plague

2010-02-05T14:09:00.001-05:00

When I started reading this article on MSNBC.com, I saw the byline of a respected bioethics contributor and thought that I would find a well-written article detailing Andrew Wakefield's many ethical shortcomings. As I expected, the article focused on the widespread fear of vaccines caused in large part by Wakefield's false claims, as well as the "immeasurable harm" done to children by maladies that could have been prevented.

I also found something that I was not expecting to find from an author who certainly should have known better: Language characterizing autism in melodramatic and grossly inaccurate terms such as "dread disease," "epidemic," and "plague."

Given the fact that Arthur Caplan previously has written articles cautioning against eugenics and pointing out the contributions of autistic people to society, I do not interpret this language to mean that he literally views our existence as a plague or that he has an actual dread of us. Rather, I think that he might have been using the language in a rhetorical fashion to illustrate the extent of the parents' fears. That would have been fine if he had put it into the proper context, such as by stating that the exaggerated media coverage of autism caused many parents to think in such terms. But instead, he used broad, unqualified language that gave the misleading impression he was describing facts.

In recent years, as Caplan ought to know, immeasurable harm has been done to autistic people by careless journalism that encourages the public to dread us like the plague. Autistic children are being excluded from schools or put into segregated classrooms in ever-increasing numbers. Job applicants and employees often face discrimination in the workplace because they look autistic. Bullying and abuse are rampant, while the victims get the blame for not being sufficiently normal to make friends with their tormentors.

A correction of the article and a prompt apology to the autistic community are needed. Arthur Caplan can be contacted at the following address:

caplan@mail.med.upenn.edu

Can you relate?

2010-02-02T11:38:00.002-05:00

I've mentioned before that one of the advantages of the Internet is its diversity, which has the salutary effect of correcting misconceptions and prejudiced statements almost as soon as they occur. When someone posts biased or incorrect information about a group of people, it's highly likely that one or more readers will set the record straight.

But sometimes such comments can get rather incongruous. In response to my last two posts, a few people seemed to think (1) that I might be prejudiced against poor whites, Southern whites, and/or hillbillies because I used dialect in describing small-town ignorant attitudes, and (2) regarding my discussion of the Ghost Dance of 1890, that I shouldn't make historical analogies that suggest it is possible for the average person to relate to anybody except whites.

Oy.

I don't disagree with the general observation that a person cannot fully relate to the lives of those who belong to a different nationality, race, time period, and so forth. However, it's also not possible to fully relate to the perspective of the guy who lives down the block. The range of human experience is vast. I believe that it is not only appropriate, but essential, to try to broaden our understanding of how our lives relate to those of others, even though such efforts will always fall short. When we identify ourselves primarily with one group (whether it is defined in terms of race or anything else) and assume that we cannot relate to anyone outside the group, our lives become much the poorer for it.

I'll give you an illustration of where such assumptions can lead. This is a true story, unfortunately. I have an older relative who lives in a part of the city that is no longer safe. There are frequent drug deals and people getting shot at the corner gas station. He won't even consider leaving the area, however, because he only feels comfortable in an all-black neighborhood. If he moved somewhere else, he might have white neighbors; and he is firmly convinced that he can't relate to white people and that it is dangerous to even try. He has on occasion lectured younger family members that they must never socialize with white co-workers after hours because it might just be a ploy to lure them to some isolated area and lynch them. The Internet is never going to change his views because he is highly unlikely to visit any websites that might challenge his prejudices.

When I blog (and in other areas of life too), I try to keep in mind that whatever assumptions I make about other people are likely to be wrong. Of course, any interaction with or discussion of others must necessarily involve making assumptions of one sort or another, given the fact that there's no way to know everything that might be part of another person's thoughts and experiences. As we go through life, we constantly adjust and recalculate our assumptions; but they never disappear entirely, no matter how well we may think we know another person.

To be clear, the previous sentence refers to people in general, not just to autistics. I don't believe that the need to adjust one's assumptions is unique to autistics or that there is some sort of magical social superpower enabling non-autistics to read minds. People may be more accurate in making assumptions about those who have neurological traits similar to their own; but that also can be said about people of the same gender, nationality, or any other subset of human experience.

The extent to which it is possible to relate to others always depends on a great variety of circumstances, some of them changing from one moment to the next. And it is by necessity an imperfect process, full of misunderstandings. As we begin a new decade, however, I am hopeful that the personal connections created by blogging and the Internet will lead to more awareness of social assumptions and more vigilance in correcting them, while recognizing that there will always be more to learn.

Ghost Dance

2010-01-25T09:25:00.005-05:00

The Native American tribes of the Northern Plains, forced onto reservations and near starving in 1890, were drawn in large numbers to a new religion called the Ghost Dance. Led by the shaman Wovoka, this mystical cult sought through ritual dancing to bring about a magical restoration of the world that they once had known. If they performed the dance with a pure heart, Wovoka assured them, it would bring their ancestors' ghosts back to life and bring the great herds of buffalo back to the plains.

The Ghost Dance soon lost its popularity with the tribes when no restoration happened. The buffalo remained on the verge of extinction for many years, and the families on the reservations continued to live in poverty. The tribes lost much of their history and culture when large numbers of children were taken away to boarding schools to learn English and to become assimilated into an America where their skin color would always mark them as second-class citizens.

Now, over a century later, the world we live in bears little resemblance to the one that the Ghost Dance believers sought to restore. Buffalo herds are no longer a rare sight, thanks to bison conservation efforts and commercial ranching, but they no longer have the cultural significance that they had when the tribes relied on hunting for survival. And while a modern lifestyle of burgers and fries, pickup trucks, paychecks and mortgages does indeed have some advantages in that most people nowadays don't have to hunt anything to put food on the table, it also has its constraints. In today's world, we almost never look out over wide-open landscapes, breathe in the magic of a new day and feel confident that the Earth will provide for our needs. We just stop at the local burger joint for a take-out meal.

Sometimes I feel like a ghost blogger, sending forth my words to dance on glowing screens in the hope of restoring a world that has been altered irrevocably. When I write about autistic people and our way of life, I have in mind a social minority culture that existed long before today's labels and diagnostic categories. This culture, the one in which I grew up, strongly encouraged a love of learning and of the natural world. Passionate interests were often discussed at length, not stigmatized as symptoms of an unfortunate disorder. Like the tribespeople when the buffalo still roamed the plains, we felt an almost mystical confidence that there would be a place for us in the world.

This is not, however, the existence that many of our young people know. Like the conquered tribes struggling to survive on the reservations, their natural way of life has been taken from them, forcibly suppressed and branded inferior. Many autistic students attend segregated schools where, like the Native American children in the boarding schools, they are taught that they must change almost everything about themselves before the majority population will grudgingly tolerate their presence.

At some point in the future, mainstream society's greater awareness of autistic differences can be expected to have more positive outcomes. Schools and workplaces will adapt to accommodate our needs. As with other minority groups, our diversity will be accepted and our contributions to society valued. Our right to self-determination will be protected. Our culture and way of life will be recognized as legitimate.

And yet, when this happens, we will no longer be the same people.

Crossposted to Shift Journal.

Good Ol' Boys

2010-01-16T12:31:00.003-05:00

This town's for normal folks, see. You know, the good folks that look and sound and act just like the rest of us. Them others what ain't normal, or got kids what ain't normal, well—they don't none of 'em belong in this town. Let 'em keep to their own kind. And one thing's for sure, they ain't got no business putting their brats in our schools, right next to proper-acting kids. Fact is, them what ain't normal just need a good beatin' to teach 'em their place.

'Course, we know they ain't never gonna be normal, however much we beat tar outta 'em. See, they ain't really human like us. But we just like to whup on 'em anyway, 'cause it's fun, and maybe if we do it enough we'll finally beat some sense into their thick ree-tard skulls and run 'em outta town.

Just now heard tell there's some agitatin' in Congress about seclusion and restraint in the schools. Seems we got us some damn fools who think it's cruel to lock ree-tards in broom closets or duct tape 'em to chairs. They even set up a National Call-In Day to do more agitatin' about it. Hoo-ee, ain't they ever gonna stop yappin' about civil rights and interferin' with the way regular folks do things? It was bad enough when we had to let the Nee-groes into our schools, and of course they started gettin' too friendly with our daughters, and now we got us a moo-latto in the White House. Country's goin' to hell in a handbasket, I tell you. Ain't no wonder we got troublemakers as want to be nice to ree-tards.

Don't let 'em fool you with all their agitatin' about civil rights. You know, that's just a code word for the Satan-worshiping commie Illuminati conspiracy to set up a world government, take away all our guns, and burn all our Bibles. Well, I got plenty guns in the cellar, and even a Bible down there somewhere under all the ammo, and anyone fool enough to come for my guns is gonna be pure-dee daid. Got me a rope for any ree-tard what tries to get too friendly with my daughter, too, and a big ol' tree picked out to hang him from.

Now, if any good normal folks want to find me before the Klan meetin' tonight, I'll be out on the lake fishin' with a bottle of Jim Beam…

Behavior and Respect

2010-01-08T17:24:00.004-05:00

Just read an interesting post by Mark Stairwalt about the management of workers in fields such as information technology and library cataloguing, where an autistic cognitive style is prominent. He cites a Computerworld article by Jeff Ello, which points out that among such employees, a workplace culture has developed that places much more value on getting the job done accurately than on social pleasantries. Others who lack understanding of this culture often stereotype the workers in terms similar to those often applied to autistic people, calling them egocentric, antisocial, and so forth. Such behaviors, however, are usually a reaction to incompetence in the organization. When managers take the time to learn what kinds of internal procedures and structures make the work flow smoothly, they are likely to find that their employees are much easier to manage. In the same way, those who describe autistics in terms of stereotyped behavior problems lack understanding and respect, which gives rise to many frustrated reactions that would not otherwise have occurred. As stated by Dr. Morton Ann Gernsbacher, reciprocity needs to be mutual and symmetrical.

To elaborate further on this point, although social skills often are defined to mean the set of scripted behaviors preferred by the majority, that's really not what genuine social competence is about at all. Rather, a socially competent person is one who understands that there are many different subcultures with their own social preferences, and who makes a respectful effort to understand those differences and to interact with others in ways that they prefer. Instead of sending autistic people to social skills workshops to learn how to behave as if they were not autistic, we ought to be sending everyone to cultural competence workshops to learn that they shouldn't expect everyone to behave the same way. We've learned this lesson, for the most part, with ethnic minorities; it's time to apply the same principles of respect and inclusion to neurological minorities as well.

A particularly egregious example of what happens when autistic people are stereotyped as nothing but a collection of behavioral deficits can be found in the case of Zakhqurey Price, an 11-year-old boy who has been charged with felony assault based on resisting restraint at school. ASAN has created an action alert describing what you can do to help protect this boy's rights—a concerted effort by our community is needed here, so please take action.

Autism Speaks Loses UK Affiliate

2010-01-03T22:38:00.003-05:00

Hat tip to Socrates at The New Republic.

This latest misadventure of Autism Speaks has demonstrated, yet again, arrogance and ineptitude on a truly epic scale. When Autism Speaks finally ends up in the history books (where, less than four years ago, it declared its intent to put the world's entire autistic population), the tale of its demise will be one of hubris befitting a classical Greek tragedy.

To briefly sum up the debacle, before releasing the I Am Autism video in September to widespread condemnation from disability rights groups, Autism Speaks had presented its text as a "poem" at a May meeting with British supporters in London, where it was received with about as much enthusiasm as a heap of decomposing Thames flotsam. After that, having apparently concluded that it didn't matter what the Brits thought and that no propaganda was too extreme for the United States, Autism Speaks went ahead and created the video anyway. Not only did it suffer a major media embarrassment as a result, it also lost an international affiliate, as the UK nonprofit group that had been a branch of Autism Speaks has now formally cut its ties with its former parent organization and has renamed itself Autistica.

Although the newly renamed group seems to be just as interested in genetic research as the old one, it seems to have at least enough sense not to openly advocate eugenics. Its mission statement describes its purpose as follows:

Autistica seeks to use biomedical research to bring benefits to individuals and families affected by autism spectrum disorders.

Autistica is dedicated to raising and investing funds to support high-quality peer reviewed research which focuses on determining the causes and biological basis of autism spectrum disorders; improving diagnosis; and advancing and evaluating new treatments and interventions. We are committed to ensuring that increased understanding and new scientific knowledge will improve the quality of life for all those affected.

Autism is one of the most significant but least researched developmental disorders and Autistica has set itself the task of achieving major breakthroughs within ten years.

Nothing in there about prevention, eradication, prenatal screening, or putting autistic people in the history books. Fancy that.

Culture and Happiness

2009-12-26T12:32:00.003-05:00

I've been reading an interesting discussion on the blog A Grand Illusion, which began by asking what's wrong with wanting a cure if someone feels that they can't do what they want to do because of their autism. A commenter posted a snarky reply along the lines of "get over yourself, there are plenty of starving peasants living in huts who are much worse off than you." By way of rebuttal, the next few posts had to do with indigenous cultures and how happiness is perceived in different places across the world. Global surveys asking people to rate their level of happiness have shown that peasants living in dung huts in isolated villages feel significantly happier, on average, than the urban poor in wealthy countries.

Happiness, it seems, is more about cultural expectations than it is about material wealth in the abstract. When people feel that they have as much as the others in their society, they are happy; but when their culture dictates that they ought to have something else, they're likely to complain about whatever they don't have and to see themselves as unfairly deprived. People tend to take for granted many things that make their lives easier—such as electricity and running water—if everyone around them also has these things, and they don't feel happier because of having them. On the other hand, peasants who have never had such conveniences in their villages don't have any reason to think about it.

I would take this point even farther and say that it effectively answers not only the snarky commenter, but also the original question of why autistic people have different levels of satisfaction with their lives. There are some who feel like the urban poor in the surveys, believing that if they weren't autistic they could accomplish more in modern society. Others have an attitude more like the contented peasants, never having thought of themselves or their autistic family members as lacking anything in particular, and taking offense when those who don't share their perspective find fault with their way of life.

When people have different cultural expectations, arguing about how they ought to feel isn't likely to change anyone's point of view. As with any such differences between groups of people, it's often more useful simply to discuss what they feel without being overly judgmental about it, while working toward a more constructive mutual understanding.

Wishing a happy New Year to all!

Thank You, President Obama

2009-12-17T15:30:00.001-05:00

When I endorsed Barack Obama's presidential candidacy on this blog in early 2007, it was because I judged him to be an enlightened and progressive thinker who would be capable of seeing the autistic population from a multicultural perspective—not as a plague to be fought and eradicated, but as a minority constituency made up of human beings and worthy of the same respect and representation as any other citizens.

I can't think of a time when I've been happier to learn that my first impression was accurate. President Obama made it clear that he is indeed a good friend of the autistic community when, as announced in this White House press release yesterday, he nominated Ari Ne'eman of the Autistic Self Advocacy Network to serve as a member of the National Council on Disability.

Here's an excerpt from the press release:

President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

YEE-HAW!!!

Autism Speaks to Hurricane Victims: What, You Thought We Cared?

2009-12-09T10:10:00.003-05:00

I'm reposting, in its entirety and with the author's permission, an e-mail from a New Orleans mom whose family lost their home to Hurricane Katrina. After seeing an Autism Speaks page that asked for donations to help families with autistic children who were homeless after the hurricane, she made the mistake of calling to ask for help and got nothing but grief.

Thank you for posting this information about Autism Speaks' impressive generosity . . . to its staff, bankers, and PR people. It doesn't surprise me that Autism Speaks shovels piles of money at their executives and their Park Avenue rent. In 2005, I personally found out just how eager they really are to help the families they claim to raise money for.

Our family was displaced by Hurricane Katrina and lost half of our household goods in the flood, including a car. We evacuated to New England, where we had some relatives, but we were otherwise completely isolated from everyone we knew. I searched online to try to find out what happened to a New Orleans friend, another parent of a child with autism. I was thrilled to find her mentioned on a page for "AutismCares," a project that Autism Speaks was asking people to donate to, so they could help families like ours who were homeless and trying to help our children with autism cope with all the upheaval. The website was featuring my friend, who was supposed to open a school for kids with autism, but Katrina hit the city on the day it was to open, and the school building was totally destroyed. Give to AutismCares, the site asked, so we can help deserving people like this.

I sent an e-mail to the contact person listed on the site, asking them to forward my contact information to my friend, so we could provide each other with emotional support. I also applied for some assistance because we were about to move back to New Orleans from Massachusetts. I spoke on the phone with an AutismCares woman who wanted to know exactly how much money we were requesting, and what it would be used for. She would have to be able to justify the expenses to her boss, she said, so she would need us to fax her an itemized estimate before they could even consider sending any funds.

We had to get a trailer hitch for our car because we were going to tow a small trailer with goods that family friends had donated, so that we could start over. We knew from many summer trips back and forth between New Orleans and the relatives' house that the drive would take 2 1/2 days (driving 8-10 hours a day), so we were hoping that AutismCares could help us pay for two motel nights--we're not talking about the Hilton, mind you. Comfort Inn, Quality Inn. All in all, we were only asking for about $300.

The AutismCARES woman I spoke to took the most uncaring tone of anyone I had dealt with so far, and I'm comparing her to FEMA operators and Red Cross operators, two other organizations that were supposed to help us, but didn't, despite hours spent on the phone and multiple calls. The AutismCARES lady implied that we had no right to be hauling anything across country. If we had so much stuff, we couldn't be that bad off. (The only reason we had any of these things was because it was donated; we sure didn't have the money to replace what we had lost. Even if we could afford it, very few stores were even open in New Orleans yet.) She questioned why we needed to stay two nights in hotels. When I explained that we had driven the route many times before and knew how long it took, she told me in an exasperated voice that SHE routinely drove from Philadelphia to Florida in 18 hours. When I said that with two young kids, one with autism, such long days weren't really an option. Well, she said, SHE made the PA - FL drive with two young kids AND a cat, AND she did ALL the driving.

At that point, I gave up. There was obviously no convincing this angry lunatic that we deserved any help. From her tone, she clearly thought we were just leeches. I had too many other things to do in order to move out from our temporary lodgings and prepare for a cross-country drive. I couldn't waste any more time begging for help from someone who wouldn't do anything for me but make me cry.

Only later, as we made the drive, did I realize how much shorter a trip from Philly to Florida would be, straight down the eastern seaboard. We were going diagonally across half the country. Just getting from eastern Massachusetts to the far side of New York City takes most of one day. Driving from Philadelphia, she didn't have to deal with New York at all.

Later still, after we were resettled in New Orleans, I finally tracked down my friend, who had also made it back. We had a great reunion, and I eventually asked her if the lovely people at AutismCares had ever forwarded my e-mail to her. She looked like she wanted to scream. No, they had not, she said, but that didn't surprise her. They had been using her story to promote their cause, panhandling for donations so they could help all the families displaced by Hurricanes Katrina and Rita, implying that they were going to provide her with a huge donation so she could re-establish the school she had worked so long and hard to open.

"They never gave me a cent!" she said. "Not a penny!" When it finally became apparent that they had no intention of helping her, she had to contact them repeatedly before they took her name and story off their website.

Autism Speaks. Appropriate name. They are ALL TALK when it comes to directly assisting the families they claim to care about so much.

While I was verifying the accuracy of the above statements, I contacted the friend whose school was destroyed. She told me that it is all true, that Autism Speaks used her story for promotional purposes without ever giving her any money for her school, and that it went beyond that...

I was opening a school for autistic children the day Katrina devastated New Orleans. Not only was the school totally destroyed but I lost my home and all of my personal possessions, as did my parents, aunt, and everyone in my neighborhood. We couldn't access money from the bank and had to figure out where we were going to go and what we were going to do. I discovered that Autism Speaks or Autism Cares was in the area helping families. I called one of the people who now works for Autism Speaks and lived in Baton Rouge at the time. She said they would provide me with money, clothing, etc. I have a family of 5 and we all had 2 days worth of clothing, which is normal when evacuating. When I gave her my cousin's address in a well established, safe neighborhood in Baton Rouge and she discovered it was a predominately African American neighborhood, she said she didn't go to neighborhoods like that...

My family of 5 and I were sponsored by a church and autism organization in Austin, Texas where we spent 15 months being displaced before we could return to New Orleans. I was told they would help with the school. Well, we received nothing. Once I returned to New Orleans to rebuild my home and the school, I contacted Autism Speaks which was much larger by then to see if there was any money for school equipment, etc. I was told to look on the website and see if there was any grant I was eligible for. Well, there wasn't. I never heard from them again and was pretty much brushed off. I don't know of anyone that money went to or organization here in New Orleans trying to make a difference.

There is more I can say but I think this answers your question. All I can say is that Autism Speaks, doesn't speak for me.

Holiday Cheer

2009-12-05T14:19:00.006-05:00

Although I have a general rule of not endorsing products on this blog, I am making a one-time exception (for which I am not being paid in any way) to let my readers know about the beautiful handcrafted Christmas ornaments sold by Highland Roses Design.

Its founder, who blogs at Cheaper than Therapy, describes Highland Roses Design as "a collaborative craft studio to help market the creations of adults who have disabilities and their family caregivers in an effort to help them become more financially independent. If they aren't mobile or prefer to work in their own homes, we pick up and deliver the supplies to them. Every step of the process is a collaborative effort."

She mentions on the Highland Roses Design website that people who have mental illnesses or developmental disabilities sometimes do not qualify for disability assistance but are unable to work without accommodations in a traditional employment setting.

Of course, the Americans with Disabilities Act requires employers to provide reasonable accommodations to qualified workers who have disabilities, but in recent years many workers could not assert their legal rights because of lax enforcement by the Bush Administration and conservative court decisions that greatly narrowed the scope of the law's protections. Although things are changing for the better as a result of Congress' passage last year of amendments to the ADA and a new administration that actually seems to be listening to self-advocates' concerns, at present there are still many people with disabilities who are unemployed because of discrimination, and craft projects such as making holiday ornaments can help such individuals to gain work experience. If you are considering buying handcrafted ornaments this year, please check out the Highland Roses site.

Hard Times for Autism Speaks

2009-12-02T18:15:00.006-05:00

It appears that Autism Speaks may be feeling the financial consequences of having chosen to use fear-mongering ads as a fundraising tactic, to fund research aimed at eradicating autistic people instead of giving families any meaningful help, and to exclude autistics from participation in its decision-making process. Due to budgetary constraints, all of its 2009 grants, including those already awarded, have been cut by 15 percent, with the exception of pilot and fellowship grants.

This hasn't been accompanied by a reduction of Autism Speaks' hefty executive salaries, however, as pointed out in a recent editorial by former walk organizer Cindy Waeltermann entitled Autism Speaks. It’s a Living. After reviewing the expense information on the IRS Form 990 on the Autism Speaks website, she wrote:

Now I ask you, does this look like an organization that is suffering? It looks, to me, to be an organization that cares more about highly paid salaries, posh offices on #2 Park Avenue in New York, pricey fundraisers and getting its name in the newspaper. They seem to exist solely to pay salaries and throw parties…

…Autism Speaks is gaining quite a reputation in the autism community. They come into a town near you with their sweeping public relations teams, hold their annual “walk for autism” dog and pony show, sucking every last dollar out of the community, only to take it back to those posh #2 Park Avenue offices. While it may seem like a noble cause, the main result of Autism Speaks’ tactics is that LOCAL organizations that actually HELP people in your very own community by providing services and supports end up begging for funding. How long are we, as an autism community, going to close our eyes to what’s really going on here? The big corporate New York “show” organization is going from town to town like an infestation of locusts sucking out every last dollar that they can in order to pay 68% of its income in salaries and overhead.

In advising her readers to just "walk off," she also mentions that Autism Speaks has been protested and picketed by autistic adults and that it has been widely condemned for its spending, its scare tactics, and its treatment of autistic people.

I'll add to her observations that according to Autism Speaks' annual report, only 4% of its grants went toward family services anyway, even before the budget reductions. It was only a matter of time before parents started to realize that they had been duped. No organization can get away with a greedy scheme like that for very long.

But hate speech is free, unfortunately, so we're not likely to see any cutbacks there.

The Language of Disability

2009-11-25T16:06:00.005-05:00

As an interdisciplinary field of study, Disability Studies explores concepts of disability from many perspectives, seeking to identify social, cultural, historical, political, and economic factors that influence how disability is conceptualized and how people respond to it. This inquiry also involves examining the words and symbols that are commonly used to describe disability, and rhetorical methods are well suited to such an analysis. For those who may be interested in contributing to the discourse in this way, I'm reposting a call for papers addressing the topic of disability and rhetoric:

Call for Papers for a Special Issue of the Disability Studies Quarterly: Disability and Rhetoric

The profound insight of Disability Studies is its conception of disability as a representational system rather than as a medical problem, a deficit, or a personal tragedy (Thomson, 1997). In this view, disability is regarded not as a settled physical or cognitive fact but rather as a discourse, a collection of figures and narratives, tropes and topoi, speakers and audiences that suggest identities and positions in the world to those participating in the discourse. The analysis of disability, then, necessarily goes beyond medical and psychological perspectives to consider how words and other symbols may be used, recalling Kenneth Burke (1969), by human agents, “to form attitudes or to induce actions in other human agents” (41). Disability, to say it another way, is inherently rhetorical and may best be understood through methods of rhetorical inquiry and analysis.

To that end, a special issue of the Disability Studies Quarterly (DSQ) will address the topic of rhetoric and disability. While Disability Studies has revealed the essentially discursive nature of disability, rhetorical theory and analysis promise to further the discussion by contributing a unique set of methods, terms, and concepts. Rhetorical method is a particularly important concern, and we are especially interested in essays that illustrate diverse methods and modes of rhetorical analysis as these relate to disability. Essays may analyze the workings of rhetoric in printed works about disability but also in other media, including film, music, web-texts, graphic novels, and other forms of sound and image.

We define “disability” broadly to include physical, cognitive, and intellectual difference. The ideal essays will enrich understandings of the relationship of rhetoric and disability, but will also serve as models for future scholarship in studies of symbolic representations of disability. Potential issues or topics may include, but are not limited to, the following:

- Disability as, in, or and rhetoric
- Disability and or as trope
- Disability rhetorics in the media
- Disability rhetorics in the classroom, workplace, or home
- Disability rhetorics and narrative
- Disability and digital rhetorics
- Activism and rhetoric
- Disability and audience
- Disability and rhetorical appeals, the rhetorical canons, and/or the rhetorical triangle
- Disability and legal/governmental rhetorics
- Rhetorics of accessibility
- Rhetorical constructions of disabled identity

Timeline
Queries or abstracts sent by February 1, 2010
Full submissions due July 1, 2010
Final revisions due November 31, 2010
Publication in the Winter 2011 issue of DSQ.

Submission guidelines
Manuscripts must be in the form of a Word document and:

- Have a cover page that includes the author's name, institutional affiliation, and contact information
- Have an abstract of 100-150 words
- Be between 3,000-6,000 words in length (approximately 10-20 double-spaced pages)
- Provide full references for all citations
- Include a brief biography of the author (50-100 words)
- Follow DSQ guidelines: http://www.dsq-sds.org/about/submissions#authorGuidelines

Please send queries and submissions to John Duffy (jduffy@nd.edu) and Melanie Yergeau (yergeau.1@osu.edu).

References
Burke, K. (1969). A rhetoric of motives. Berkeley: University of California Press.

Thomson, R. G. (1997). Disability, identity, and representation: An introduction. In R.G. Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 5-18.

Ending Waitlists

2009-11-17T22:46:00.002-05:00

Community services and supports for people with developmental disabilities in the United States often have extremely long waiting lists because the states have not provided sufficient funding for these programs. After a person finally starts to receive services and supports, which can take years, they will be lost again if the person moves to another state. Federal action is needed as part of the health care reform effort to put an end to this inexcusable situation.

One group that has been active in lobbying to keep federal lawmakers' attention focused on the waiting list problem is NOEWAIT, the National Organization to End the Waitlists, which has been circulating a petition to federal lawmakers. I signed it some time ago and meant to blog about it, but got busy with other things and did not write a post about it until now, after Stephanie mentioned it—thanks for the reminder Stephanie!

NOEWAIT is currently looking for people to get involved in their network across the United States. I've reposted an excerpt from a recent message below:

NOEWAIT (National Organization to End the Waitlists) IS SEEKING COORDINATORS TO ASSIST IN EXPANDING NETWORK

We now have NOEWAIT state coordinators and representatives in the following states:

AL, AR, AZ, CO, CT, FL, GA, IL, IN, MA, MD, ME, MO, NC, NE, NJ, PA, TN, TX

But we have no coordinators or representatives from other states.

This volunteer position will assist in circulating information on ending the waitlist for services and gaining portability of services for Individuals with Intellectual and Developmental Disabilities by building the NOEWAIT network and developing relationships with and communicating with families, self advocates, the community, local, state and federal elected and appointed officials.

The requirements are:

Enthusiasm, organizational ability, a mission to end waitlists in your state and across the country and communication skills.

NOEWAIT will provide you with lists of individuals in your state who have indicated an interest in solving the waitlist crisis, and additional resources and ideas.

This volunteer position may, at times, require up to several hours per week, but you can adjust the work flow to meet your needs. You will be a participant in an email listserv with other state coordinators and representatives, sharing ideas and solving challenges.

We need individuals from every state, the District of Columbia and the Territory of Puerto Rico to volunteer to take on this endeavor. If interested in helping to end the waitlist and gain portability of services, please contact:

Denver Fox, Ed.D.
Moderator, National Organization to End the Waitlist
Noewait@Noewait.net

Eradicate Autism Speaks

2009-11-13T16:40:00.005-05:00

Apparently in today's America, you can be hailed as a philanthropist if you are seeking to "eradicate" a minority group. Of course, it helps if your husband recently was the CEO of the media entity responsible for publishing this Goebbels-esque propaganda. Many of us already knew what a genocidal loon Suzanne Wright is, but just in case anyone needs more proof, here it is:

Philanthropist wages fight to eradicate autism

(Update: After I wrote this post, the title of the article was altered to read "Philanthropist wages fight to cure autism.")

In the interview, this was her response to a question about how long Autism Speaks plans to host celebrity fundraising events: "Hopefully until we eradicate autism. Once we finish autism, then we’re not doing this anymore."

Well, you know what, Suzanne, if decent people eradicate your repulsive organization first, you won't be doing this anymore either. And it may not be long before that happens. On Tuesday, ASAN will have protesters at a much publicized Autism Speaks celebrity event in New York City. I've reposted the ASAN announcement below.

By Ari Ne'eman, ASAN President.

We'll be gathering at Seventh Avenue and 57th Street, 154 West 57th Street in New York City from 6 PM to 8 PM this coming Tuesday, November 17th, to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld. Come join us! Please RSVP to aneeman@autisticadvocacy.org or go to the facebook event page here: http://www.facebook.com/event.php?invites&eid=205191180125

Please distribute to your friends, contacts and listservs!

WHY ARE WE DOING THIS?

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part this is due to Autism Speaks' public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their "Autism Every Day" film in 2005. Indeed, throughout Autism Speaks' fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks' budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks' research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Link to our Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61

Community and Respect

2009-11-10T15:20:00.002-05:00

In the military, as Clay describes in the first post of an excellent series on leadership training and respect, officers salute not only other officers but also enlisted personnel. This is not simply because of regulations and tradition, but because the salute signifies mutual respect between people working together toward a common goal. There is, however, a considerable difference between the rote show of respect for the uniform and the more meaningful respect that must be earned throughout the career of the person wearing it.

Applying this point more broadly to groups other than the military, I would say that meaningful participation in a community is not a matter of symbolic representations of group status such as a uniform or document issued to signify a person's membership in the group. Rather, a community and its culture arise from the many ways in which its people work together, communicate about their shared interests and mutual concerns, and show understanding and good will toward one another. When we pay more attention to symbols than we do to the community that they are supposed to represent, we risk losing the true respect and understanding that should be at the center of the community.

This is particularly the case when the identifying symbols are issued by others who are not part of the community, as Mark Stairwalt discusses in a recent article that draws the distinction vividly by means of a retold story involving tribal identification cards issued by the federal government. I won't quote any of that story here because I don't want to spoil it for readers, but I'll say that it has a powerful impact and that it is well worth following the link. The article goes on to make an analogy to the autistic community and the idea that having official diagnostic papers is what makes a person autistic:

…only some of us are “registered Indians.” Rather than a BIA identification card, some autistic bloggers have been reduced to posting a scan of their autism diagnosis, a “note from the doctor” in order to prove that they know whereof they speak. Others are derided and discredited for speaking about autism from the perspective of self-diagnosis. Most of the demand for this sort of “certification” may come from those who do not identify as autistic (at least not openly), but insofar as any of us take such demands seriously, we remain a house divided, by our own hands.

Protesters Attacked by Flying Burrito Wrap

2009-11-03T20:37:00.010-05:00

The ASAN members and cross-disability activists who protested at the Autism $peaks walk in Washington DC on Saturday, October 31st, resisted the temptation to dress in ghoulish Halloween costumes. Not everyone at the walk showed their level of maturity, however, as reported by a protester named Stan:

"I was watching the first large group of Autism Speaks walkers, and one guy looked at us and threw a burrito wrap sandwich at us. It looked like he was throwing a burrito at us. It was like watching a Monty Python burrito attack."

When I mentioned that I thought this deserved a blog post, another person suggested that I should not write negative stuff about the burrito-tosser because he was just a frustrated parent. Given the fact that Autism $peaks goes to great lengths to induce feelings of helplessness, frustration, and despair in parents for their own financial gain, I'd say that guess is probably accurate, so I'll refrain from writing a Monty Python parody of Sir Tossalot. You'll just have to imagine what it would look like.

Instead, I'll list a few reasons why I think a flying burrito wrap would be an excellent mascot for the organization. Their blue puzzle piece is getting old, and any marketing consultant will tell you that new logos and rebranding campaigns are a great way to stir up interest. Why a burrito? Well, it suits Aut$peaks in so many ways... they're cheesy, they're full of beans, and too much ingestion of their propaganda is likely to cause major gastrointestinal distress.

I'm picturing Burrito Bob with a flowing burrito-wrap cape and a big $ on his chest. I was going to sketch him for this post, but I had too much indecision about what his head ought to look like. So many snarky possibilities abound. I decided, instead, to invite those of my readers who enjoy art to design a suitable flying burrito wrap mascot. Post him on a website somewhere and put a link in my comments to give Aut$peaks some well deserved ridicule!

Edit, November 6: Neil Kapit, an autistic cartoonist who has a blog and a DeviantArt page, contributed the Burrito Bob sketch below. Thanks Neil!

Second edit, November 14: Maddy McEwen of Whitterer on Autism, who proudly looks at life through rose-colored spectacles, contributed Rosy the Flying Burrito (stuffed with cash). Much appreciated Maddy!

Segregated Workplaces

2009-10-31T20:19:00.009-04:00

I've seen many blog and forum posts and articles about Specialisterne, the Danish company that recruits autistic workers for software testing positions, and similar enterprises that seek to hire autistics for jobs thought to be especially well suited to their talents. Quite often, these companies are described in glowing terms, along the lines of, "Look, wow, there's a business that actually hires autistics!"

Well, okay, it's good that these companies have hired autistic workers who had been denied jobs elsewhere. But should it be seen as a fabulous, wow-inducing event when an employer simply obeys the law by giving fair consideration to, and then hiring, a qualified applicant with a disability? The focus of this conversation, as I see it, is grossly misplaced. Rather than being all about the nice guys at Specialisterne who hire autistics, it should be on the prejudiced employers who don't, and on what can be done to meaningfully enforce the equal employment opportunity laws and drag every one of those bigots kicking and screaming into the twenty-first century.

Also, to the extent that companies specifically seeking to employ autistics have been described as engaging in affirmative action, that's not what the concept is supposed to be about. Affirmative action was never meant to result in segregated workplaces where increased efforts were made to hire minorities to work in separate locations. It's about changing attitudes in mainstream workplaces to make them more welcoming places for minority employees. Separate but equal just doesn't cut it.

I'm reminded of an incident that occurred in the mid-1980s, when racial integration in American society was nowhere near what it is today. At a predominantly white university, an African-American student was graduating with a degree in engineering after years of having had bricks thrown at his head from dorm windows, occasionally being flunked by bigoted professors when he had done as much work as his white classmates, and so forth.

A recruiter for a major technology company interviewed him on campus and expressed great interest in having him visit the company for a second interview. He was at first quite excited at the prospect of what looked like an excellent job opportunity. As it turned out, however, the location that he was invited to visit was not the company's main building, but was instead a segregated facility for minority engineers. In its promotional materials, the company tried to dress it up in nice pretty flowery terms as a place where tomorrow's leaders could gain experience, et cetera. That didn't do much to hide what was really going on there.

The young engineer ended up taking a job with a smaller company instead, where although the starting pay was less than he would have gotten at the larger company, he was treated the same as all the other employees. Within a few years, his skills and diligence had impressed management enough so that he was promoted to a position of greater responsibility and much better pay.

Moral of the story: Don't settle for a segregated workplace. Those who praise such facilities for autistic workers often cite statistics purporting to show that very few autistics could find jobs otherwise. I've been arguing for years that such statistics are grossly inaccurate because they do not take into account the large number of employed autistic adults who never got a diagnosis, which often happens because a worker does not know that he or she is autistic, or perhaps because the worker is afraid of discrimination and has decided to stay "in the closet."

A recent British study, discussed in detail by Joseph at the Natural Variation blog, shows that despite rampant stereotypes to the contrary, most autistic adults are in fact employed. Rather than simply interviewing people who already had an autism spectrum diagnosis, the authors of the study took their research subjects from the general population and then evaluated all of the study participants to determine how many of them met the criteria for a diagnosis. This approach resulted in much more accurate figures than previous studies because it removed all of the confounding factors having to do with how and why a diagnosis might have been made.

Although the autistic participants in the study had a lower rate of employment than their non-autistic counterparts, the disparity was nowhere near as large as the previous studies had indicated. What this means to me is that, yes, we need to do more to ensure that every autistic job-seeker has a fair opportunity to find work; but we don't need to go about it by setting up segregated workplaces that reinforce stereotypes, while letting prejudiced mainstream employers go merrily on their bigoted way.

Autism Speaks, We Need Answers

2009-10-23T14:44:00.002-04:00

Autism Speaks, which still hasn't learned its lesson about fear-mongering advertising and seems incapable of doing so, has decided to exploit a recent study of autism prevalence in the United States to incite even more false epidemic hysteria by way of a new fundraising campaign called "We Need Answers."

autismspeaks.org/donate/we_need_answers.php

The study found a parent-reported autism prevalence rate higher than previous US estimates, although not significantly different from the figures found in studies from the UK and other countries. Notwithstanding the fact that this new study merely brings autism prevalence estimates in the United States more in line with those from other parts of the world, Autism Speaks howls on its web page, "These new findings reinforce that autism is an urgent and growing public health crisis…"

Well, no, these findings don't prove anything of the sort. About all that's being reinforced here is Autism Speaks' penchant for unethical advertising based on distorting the facts, which isn't anything new either. But I have to agree with them on one point: We need answers. No, not to the question of why there are so many autistic people in the world, which is a question that I consider just as obnoxious as if it had been asked about any other minority group. Here are just a few of the questions I'd like to see them answer:

(1) Autism Speaks, how long do you think you're going to be able to keep large numbers of parents obediently marching in your fundraising walks to pay your executives' hefty salaries and to fund your eugenics-loving researchers, when it's increasingly obvious that almost none of the money raised goes back to communities for family services?

(2) When large numbers of disability groups take the almost unprecedented step of publicly condemning an advocacy organization's harmful advertising and unrepresentative practices, doesn't that suggest it might be a good idea for said organization to rethink its approach?

(3) Do you really expect that nobody is going to notice when, instead of encouraging meaningful participation in decision-making by those on whose behalf you pretend to speak, you curse self-advocates and claim that they don't exist?

We're never going to see any responses to these questions, of course—but Autism Speaks' stonewalling doesn't change the fact that we need answers.

Taking to the Streets

2009-10-14T09:52:00.003-04:00

People who don't understand that autism prevalence has remained stable often ask how there can't be an epidemic when they have seen large numbers of autistic children only in recent years. Where were all the autistic people before now?

Of course, before the diagnostic criteria were broadened, most were not identified as autistic and were looked upon as part of the general population. Others were rarely or never seen in public because they were kept hidden away at home by their families or were sent to institutions.

As reported by Hard Won Wisdom, it appears that at least one older autistic person is taking part in the ADAPT protests in Atlanta, Georgia, which began on Sunday, challenging the state's failure to close down institutions and to provide community services and supports instead. A protester who calls herself "Spitfire" and who was thought to be autistic as a girl in the 1950s talked about how ADAPT had saved her from a nursing home. She described her participation in numerous protest actions since then.

In Columbus, Ohio, members of the Autistic Self Advocacy Network also held a protest this past Sunday, holding signs and handing out leaflets at an Autism Speaks walk to inform the participants about Autism Speaks' hateful advertising, exclusion of self-advocates from leadership positions, eugenic aims, and minimal services for families. You can find articles about the protest on the ASAN Central Ohio blog and also on the ASAN Southwest Ohio blog. And here's a video of the protest:

I expect that in the near future, as we see more autistic people coming out of the closet and onto the streets to demand equal rights, there won't be so many questions about where the older autistics are.

Supporting Allies

2009-10-07T14:35:00.004-04:00

This morning, the Autistic Self Advocacy Network released a joint letter from over 60 disability rights organizations calling on sponsors, donors, and supporters of Autism Speaks to end their support for the organization because of Autism Speaks' hateful attitudes and exploitative practices. ASAN also issued a press release and set up a petition site where individuals can endorse the letter.

The disability rights advocates who are supporting ASAN and the autistic community in this effort are not receiving any financial benefit whatsoever from doing so. Rather, they are standing in solidarity with our community because it is the right thing to do. In the interest of reciprocating, and to advance the rights of people with disabilities everywhere, I suggest that the members of our community read the list of signatories to the joint letter and provide assistance to their advocacy efforts. In particular, ADAPT has an event planned in Georgia beginning this Sunday. If at all possible, go there and help out! Details below:

COMMUNITY ADVISORY

Community Choice is a Civil Right: Disability Rights Direct Action Arrives in Atlanta

Who: 400 ADAPT activists from Georgia and across the United States
What: ADAPT Fall National Action 2009
When: October 11-14
Where: ATLANTA, GEORGIA!

Links: www.adapt.org and http://www.disabilitylink.org/docs/adapt.html

Direct action is about to strike the hometown of the Reverend Martin Luther King, Jr. As the nation continues to struggle with health care reform, ADAPT grassroots disability rights and senior activists continue to advocate for the end of the institutional bias in Medicaid and a revolution in community choice.

Over 62,000 Georgians with disabilities live in nursing homes and institutions. The 1999 Olmstead Supreme Court case, fought by Georgians, guarantees that no one has to live in a nursing facility or institution against their will---it is a civil rights violation. Now, ten years past Olmstead, Georgia remains out of compliance and thousands of Georgians with disabilities lack adequate access to community supports, like millions across the nation. The percentage of Georgians with disabilities under age 65 who live in nursing homes is on the rise. When the system doesn’t work, it’s time for the people to take action.

Neither of Georgia’s Senators officially support the Community Choice Act or Community First Option. Adequate funding for Georgia disability programs is currently in danger. Federal institutional bias affects every single state. Through Atlanta, we will expose to the nation how nursing homes and institutions steal the lives of people with disabilities and seniors.

We are kicking off on Sunday, October 11, with an afternoon Community Choice March through Atlanta. We will follow up with three days of direct action. Stay up to the minute with Twitter updates and action alerts starting Sunday. Follow Nationaladapt on Twitter or go to www.adapt.org and hit the ADAPT Twitter button to check out our tweets.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

Alfonso Cuarón Praises Child Rapist

2009-10-04T20:01:00.007-04:00

The video I Am Autism—created by Alfonso Cuarón and Billy Mann for Autism Speaks—first describes autistic children as embarrassing, family-destroying burdens who don't belong in public places and then proclaims itself to be an expression of "love for our children."

As if that weren't sick and twisted enough, Cuarón made it clear how little interest he really has in the welfare of children by signing a petition in support of Roman Polanski, the infamous child molester who fled from justice in 1978 after admitting that he had drugged and raped a 13-year-old girl. Polanski was arrested last weekend while traveling from France to Switzerland. The text of the petition trivializes the crime as "a case of morals," praises Polanski's achievements as a film director, offers him "support and friendship," and ends by declaring that the petition's signatories "demand the immediate release of Roman Polanski."

That's so disgusting, it just boggles the mind. Cuarón seems to believe that autistic people should be kept locked away forever, as indicated by the statement in the video that it is "virtually impossible" for autistics to go out in public, but at the same time Cuarón evidently thinks it would be just fine to turn a confessed child rapist loose to prey on other vulnerable little girls.

The despicable attitudes toward children shown by Alfonso Cuarón and Autism Speaks have no place in our community.

Marc Sirkin, Apologist for Hate

2009-10-01T14:05:00.003-04:00

Over the past few days, the clumsy attempts at damage control by Autism Speaks' chief community officer Marc Sirkin have reminded me of a certain former Iraqi Information Minister who acquired the colorful nickname Baghdad Bob as a result of his absurd propaganda during the US invasion in 2003, stubbornly insisting that American forces were surrendering even as the tanks rumbled through the city.

In honor of Sirkin's bumbling, I've created a parody skit in which Clueless Marc, the host of the We Hate Autistics Community Radio Show, has a conversation with a caller:

CLUELESS MARC: Hello and welcome to We Hate Autistics Community Radio. I suppose that, like the many parents I've just been discussing, you want to talk about the excellent I Am Autism video and how accurately it reflects your life.

CALLER: You know, Marc, not everyone who has an interest in autism issues is a parent.

CLUELESS MARC: Well, of course not. Grandparents, siblings, and other relatives all have to deal with autism's awful burden and embarrassment too…

[angry crowd chanting]

CALLER: Gee, Marc, it sounds like you might have some protesters outside your studio.

CLUELESS MARC: No, that's just Suzanne Wright watching her soap operas in her cushy office. She likes melodramatic storylines and often turns the volume up too loud.

CALLER: Yeah, I've noticed that.

CLUELESS MARC: Let me tell you about how much support Autism Speaks has gained from people all across the world recently! Our walks and our public relations efforts have been going wonderfully well.

[squeaky wood noises]

CALLER: That wouldn't happen to be the sound of your nose growing, would it?

CLUELESS MARC: Of course not. I had my nose perfectly sculpted by one of the finest plastic surgeons in New York.

CALLER: Word has it, Marc, that you admitted in an interview with New Scientist about the controversy that there's no factual basis whatsoever for the video's claim that having an autistic child is sure to make a marriage fail. What's up with that?

CLUELESS MARC: The video was just a personal poem from a father's perspective and was not intended to reflect Autism Speaks' views.

[tires screeching, two icky-sounding splats]

CALLER: That's Billy Mann and Alfonso Cuarón getting thrown under the bus as Autism Speaks frantically backpedals on the video, disclaiming all responsibility for its extensive involvement, from Suzanne Wright's personal solicitation of video footage to Autism Speaks' much-publicized showing of the video at a United Nations conference. Aren't you starting to worry about your job, Marc? After all, being a new hire and a very visible face in the community, you're the next logical sacrifice when the furor gets stronger.

CLUELESS MARC: Gah, I'll have to go back to working from my basement as a consultant, barely able to pay my greens fees! Um, I mean, of course there's no reason for me to be worried about my job, Autism Speaks is a tremendously strong organization and always has shown great loyalty to its people.

[printer starts churning out resumes]

CALLER: Well, good luck finding another gig, Marc.

CLUELESS MARC: La, la, la, I can't hear you! This call must have accidentally gotten disconnected by some strange fluke! And now, I'm excited to introduce the next guest on the We Hate Autistics Community Radio Show, a clever fellow by the name of Bernie Madoff who has several insightful things to say about Autism Speaks' business model…

Disabled World editorial blasts Autism Speaks

2009-09-29T15:56:00.002-04:00

Thomas C. Weiss, a regular columnist for Disabled World, has weighed in on the controversy surrounding Autism Speaks' video "I Am Autism" with an editorial entitled Autism Speaks: Friend or Foe?

Although Mr. Weiss indicates in the article that he had been a supporter of Autism Speaks in the past, he also makes it very clear that after watching the "I Am Autism" video, he now sees the organization as anti-disability:

"I Am Autism speaks so badly of the current leadership at Autism Speaks that I have to wonder how long the likes of Mark Roithmayr and Elizabeth Emken can remain in their current positions. The organization of Autism Speaks as a whole will most likely experience a reduction in donations from the public at large due to this horrendous production…"

Mr. Weiss further goes on to liken Autism Speaks' hateful message to the Nazis' attitude toward disabilities, bluntly stating that he finds Autism Speaks' international influence to be terrifying in light of its destructive message:

"…the organization Autism Speaks would have people believe that People with Autism are plague-carriers. Autism Speaks likens People with Autism to family-destroying, misery-creating, hope-crushing, woe-enhancing, sleep-depriving, marriage-killing monsters. Autism Speaks presents People with Autism as being an instant ride to bankruptcy.

Not since reading about Nazi Germany have I seen such an outright negative portrayal of People with Disabilities. The fact that Autism Speaks is *supposed* to be supportive of People with Autism makes me absolutely shudder with disgust. I am not alone where this dismay at an organization that declares itself to be promoters of Autism and People with Autism yet presents such a hateful and destructive message is concerned…

…Instead of placing value on people with autism, Autism Speaks has presented them as some kind of horrifying monsters, loose in society and bent on destruction. Autism Speaks wields immense amounts of money and power, with the ability to sway massive numbers of people in societies across the planet in relation to Autism. They are not using these abilities to the benefit of People with Autism."

Many thanks to Mr. Weiss and Disabled World, as well as the many cross-disability organizations and individual activists who have expressed their opposition to Autism Speaks' hate speech, for standing with the Autistic Community in solidarity.

Autism Speaks Falsely Claims Video Removed

2009-09-28T10:27:00.004-04:00

After numerous concerned people wrote to Autism Speaks stating their objections to the "I Am Autism" video, the organization's chief science officer, Geri Dawson, prepared a form reply in which she claims that Autism Speaks understands the criticism and has removed the video from its site in order to be more respectful toward autistics. But in fact, the video is still there.

Dear [name],

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

Seems to me she'd be a lot more convincing if Autism Speaks hadn't been consistently describing autistic kids as horrible burdens for years, beginning with the Autism Every Day film in 2006. And what's more, the I Am Autism video was still on the Autism Speaks website when I looked just now, very prominently featured on a page that boasts of how it was created especially for a United Nations event that Autism Speaks' co-founder Suzanne Wright hosted.

autismspeaks.org/press/united_nations_world_focus_on_autism_2009.php

If you're going to lie to us, Geri, you could at least try to get your story straight…

Edit, October 1: Autism Speaks finally wised up and removed the page mentioned above. Sure took them long enough...

Solidarity

2009-09-26T20:01:00.034-04:00

Image: Unionists challenge the Communist regime in Poland, 1981

In response to the despicable "I Am Autism" video by Autism Speaks, the autistic and cross-disability communities have been standing strong in their united opposition. Today in Portland, Oregon, 15 activists organized by ASAN's Portland chapter protested at an Autism Speaks walk and got local news coverage on two channels. [Edit: After mentioning the protest on the 6 PM news, TV station KOIN 6 followed up with an interview of ASAN chapter leader Elesia Ashkenazy, which was the lead story at 11 PM. Way to go, ASAN-Portland! Also, more coverage of the protest on FOX 12 can be seen here.]

Video parodists, bloggers, and others are all over the Internet showing their outrage. I've compiled a list of websites critical of the video below. Please feel free to copy and repost elsewhere to show your solidarity, too.

Parody/Response Videos on YouTube

I Am Autism Speaks

I Am Autism (Hatred and the Autistic Community)

I'm Autistic: Parody of Autism Speaks Video "I Am Autism"

I Am Socks - video response to "I Am Autism"

I Am Socks response to I Am Autism (short version)

I Am Socks response to I Am Autism (no music, clearer audio)

You Are Not Autism. I Am.

We Are the Real Autism

I Am Autism (I Am Nobody)

Blog Posts and Other Articles

When Will They Listen?

Autism Speaks & Alfonso Cuaron: Full of Fail

I Am Autism & The Embarrassment Trope

Harry Potter and the Bigoted Charity

Who Does Autism Speaks Speak For?

"I Am Autism" -- Awareness video by Alfonso Cuarón -- "Ransom" Reprise

Autism Speaks - the sound and the fury

Autistic Community Condemns Autism Speaks

Taking Action Against "I Am Autism"

News Coverage of Autism Speaks Controversy

Groups Outraged Over Video Released By Autism Speaks

You aren't autism. We are. Shut up and listen.

Autism Speaks Hits A New Low

3 O'Clock in the morning

Autism Sells

No, I Am Autism

Autism Speaks, but What is it Saying?

Autism: responsible for divorce, financial ruin, war, tooth decay, and so on

Hare About Autism Speaks

Awareness versus propaganda

Autistic Community Condemns Autism Speaks

I Am Autism Speaks

Autism Speaks PR Meltdown (Updated)

Responding to "I Am Autism"

Autism Speaks Gets It Wrong Again: I Am Autism Video

"I Am Autism" Video: Autistic Community Condemns Autism Speaks' Campaign

Taking Action Against "I Am Autism" Video

The Way Things Get Said

Enemies of Autism Speaks

Autism Speaks has done it again.

Don't Speak for Me

I Am Autism Video (Autism Speaks Gets It Wrong Again)

Response to Autism Speaks "I Am Autism" Video

News Coverage of Autism Speaks Controversy

Warning to Autism Speaks

Autism Speaks media campaign…I am autism

The Autism Speaks bait and switch with I am Autism

Why I don't like "I Am Autism"

I am Autism Speaks

Our Message To Suzanne Wright

Autism Speaks and the Underpants Curse

Autism Speaks Deceives Parents

I Am Pissed

Autism Speaks reaches a new low

An Open Letter to Geraldine Dawson

An Open Letter to Laurent Mottron

What if someone did this with, say, Down's Syndrome?

Calling All Celebrities: Please Stop Supporting Autism Speaks!

Tis NOT My Life!

Facebook: Protesting Autism Speaks "I am Autism" Video

"I Am Autism" -- Awareness video by Alfonso Cuarón -- "Ransom" Reprise

I am Autism Controversial Video

"Autism Speaks" again attacks autistics with neurodiversity insensitive advertisements

Autism Speaks Should Learn When to Shut the Hell Up: I am Autism. Not.

ASAN protests new Autism Speaks "I am Autism" campaign

Autism Speaks: it just got worse

Autism Speaks PSA "I Am Autism" faces major backlash

Autism is a color

To the leadership of Autism Speaks

The Latest Propaganda from Autism Speaks and My Response

Autistic Self Advocacy Network, Australia

Autism Speaks' Unethical Video Condemned

Autism Speaks Does Not Speak For Me

Autism Speaks Once Again Demonizes Autism

Backlash and a Few Days Out of the Loop

Autistic Speaker-less

ASAN issues press release condemning Autism Speaks

An Open Letter to Suzanne Wright of Autism Speaks

Help Fight Back Against Autism Speaks' Attempts to Speak for Autistic People!

Autism the boy is Alex Bain - Autism Speaks is just so Wrong

How's Your Day Going?

Two Opposing Views of Autism: Which Strikes a Chord with You?

AUTISM SPEAKS DOES NOT SPEAK FOR ME

It's Not an Entity that steals your children. I am Autism propaganda

Autistic Self Advocacy Network, United Kingdom

National Autistic Society (UK) Response to I Am Autism

I Am Autism, We Are Furious

Autism Speaks Hits a New Low

Autism Speaks: Don't Speak for My Family

“I am Autism” Isn’t

Autistic Community Condemns Autism Speaks' "I Am Autism" Campaign

Worldwide Resistance to Autism Speaks

blah, blah, blah

I Am Autism - Autism Truth from the inside looking out

Autism Speaks Stupidly

Autism Speaks and the Underpants Curse

Autism Speaks Deceives Parents

Don't Support Autism Speaks: Let Autistics Speak for Themselves!

Autistic Self Advocacy Network UK - Cambridge

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

ASAN Protests Autism Speaks "I am Autism" Campaign

Angels all around us so be careful what you do

Tell Bruce Springsteen Autism Speaks Doesn't Speak For Us!

Latest attack from Autism Speaks

New Autism Speaks video

Rethinking Autism

Autism Speaks posts disgusting Video

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

Responding to "I Am Autism"

No Representation Without Representation!

Scots Every Day

Autism Speaks ‘I am Autism’: A short response.

PRESS RELEASE: Autistic Community Condemns Autism Speaks "I Am Autism" Campaign

I Am Autism, and Autism Is Me

From Birth of a Nation to I Am Autism

Quit the Prevarication, That Video Deserves Elimination!

What Celebrities Need to Know about Autism Speaks

An Open Letter to Geri Dawson

Late to the Party

For You

I Am Autism, Autism Speaks Once Again Shows Their True Colors

The Failure of Autism Speaks' E=m*c Squared

"I Am Autism" Autism Speaks Fear-mongering Again

Autism Speaks - Friend or Foe?

'Poetic' autism film divides campaigners

I Am Autism - I'm what happens when you cannot accept Autism

Autism Speaks to confusion within its ranks

Of course, the videos and articles listed above are not a complete list. In fact, they're not even a tiny percentage of the firestorm raging across the Web. While looking at Sphere, an aggregator site, I noticed the following message:

29,238 results found related to the I Am Autism Video by Autism Speaks Controversy

[Edit: As VAB points out in the comments, Sphere apparently made an error. However, there are certainly a great many posts and videos relating to the controversy, whatever the actual number may be.]

Autism Speaks Deceives Parents

2009-09-25T00:26:00.003-04:00

As a recent post on the Left Brain/Right Brain blog pointed out, Autism Speaks engaged in a "bait and switch" when Suzanne Wright asked parents to contribute video footage of their autistic children for a new project, without disclosing any of the nasty details of what she planned to do with it. Would the contributors to the "I Am Autism" video have agreed to participate if Autism Speaks had admitted at the outset that it was planning to demonize autistic kids as embarrassing burdens who destroy their parents' marriages and dreams?

Well, at least one parent who posted a comment on the video's YouTube page, under the name BarrysDaughter, made it quite plain that she felt deceived by Autism Speaks' request for video contributions from parents. She wrote:

"I do have 2 autistic children and a husband on the spectrum. When they first suggested a video I was eager to send them one till they outlined what they wanted.

My children and husband don't want or need to be CURED what they do want is people to treat them the same as anyone else, stop the bullying and put more staff in schools to support them…"

How has Autism Speaks managed to get away with exploiting so many parents and taking their support for granted, while draining large amounts of money away from their communities and increasing the stigma and prejudice faced by their families? The answer seems to be that Autism Speaks has artfully packaged the fundraising walks as feel-good social events, thus creating pressure for people to attend because their friends are doing so, and never mentioning the fact that almost none of the money raised goes toward community services and supports. Here's a quote from a blog post written by a mother, Ange, explaining her reasons for participating in Autism Speaks walks:

"Our Autism Speaks walk is coming up soon. In the past I have had very conflicted feelings about this walk since I pretty much can't stand the organization's scare tactics. But I have walked to support my friends and their families more than anything else. I don't know if can do it anymore. I can't just write this off as fundraising anymore or ignore it while I support my friends. I can't ask friends or family to donate to an organization that makes my children look like they have some deplorable, deathly communicable disease that is spreading through the air. Nor can I in good conscience make my children participate in the walk, enforcing a message that they had no part in creating."

For Ange and other parents in her situation, I'd like to make a suggestion: It's quite possible that your friends and their families have the same concerns about Autism Speaks that you have described. Maybe, in the past, they walked to support you and their other friends more than anything else, while ignoring their qualms about the organization for the same reasons you did. It's understandable that you would worry about how your friends might respond if you said anything to them about your conflicted feelings; but you may very well discover, if you do spend a few minutes talking with them about it, that they're just as upset about Autism Speaks' scare tactics as you are.

There is power in numbers, as we know, and that power doesn't have to stay on Autism Speaks' side forever. If just a few courageous parents take the initiative to start a conversation with their friends about why fear-mongering tactics don't deserve their support, and a few of the friends do the same, and so on—then it won't take long, at all, for the voices of reason and decency to prevail.

Autism Speaks and the Underpants Curse

2009-09-24T11:43:00.004-04:00

Guest post by Rita Skeeter, award-winning journalist and ultra-reliable source for all the dirt you've ever wanted to read.

That was the name we gave it when I was a schoolgirl at Hogwarts, although the dry dusty textbook simply described it as a spell to reveal the embarrassing truth about someone. I shan't go into the details of the spell on a Muggle blog, but I'll say that it was quite popular with the students because its hapless target might suddenly find himself standing in front of the classroom in nothing but his brightly colored cartoon-print underpants.

When wielded by a more adept and sophisticated user of magic, such as yours truly, the spell has many subtler uses. I've often found it helpful for such purposes as inducing a corrupt Ministry official to make a misstep, thus giving me fodder for another of my highly acclaimed investigative reports while also providing a valuable public service.

I recently put the Underpants Curse on two ridiculously arrogant Muggles who were overdue for some public exposure of the less flattering sort. The first was Suzanne Wright of Autism Speaks, whose atrocious attitude I've mentioned before. She had been putting on a halfway convincing pretense of caring about autistic people, by means of high-profile lobbying for mandatory insurance coverage; why, she'd even managed to go more than a year without spewing any of her usual vitriolic rhetoric about eradicating autistic people. When she appealed to parents to donate video footage of their children for a new promotional campaign, she didn't raise much suspicion as to her intentions.

As for Alfonso Cuarón, the other arrogant fool I put the curse on—well, that inept excuse for a filmmaker has offended so many high-placed people in magical society that I'm surprised he hasn't gotten an Unforgivable Curse put on him yet. If it weren't bad enough that he caricatured our lives for the entertainment of common Muggles, he didn't even pay any attention to the details. I mean, really, who doesn't know that werewolves have hair? And showing that unkempt, ill-mannered little hooligan Hermione Granger as a paragon of fashion. Puh-leeze!

Now, I'm quite clever if I do say so myself. But even though my outstanding talents are widely renowned, I wasn't expecting when I put the Underpants Curse on Wright and Cuarón that both of them would reveal their true selves so thoroughly in one fell swoop. What could they have been thinking when they decided to make their "I Am Autism" video, which—just like the short-lived and widely condemned Ransom Notes ad campaign—portrays autistics as kidnapped by an evil monster and intolerable burdens on society? This explanation is as good as any (though I must say it's rather disrespectful toward my stellar reporting).

Whatever their reasoning or lack thereof might have been, their Bigots-R-Us store-brand underpants are now on display for the whole world to see. Nobody who watches that video will ever again think of Cuarón as anything but a third-rate propagandist. As for Suzanne Wright, if enough outraged autistics and their friends and family members take action, this might finally be the moment where Autism Speaks' true colors as a hate group become so obvious that its sponsors all jump off the sinking ship with their little furry tails twitching anxiously as they swim off into the sunset.

Stay tuned—there's more to come. A lot more.

Cultural Symptoms

2009-09-21T15:44:00.001-04:00

Over the weekend, I got into a discussion about whether a scientifically based argument could be made to convince researchers and other professionals not to use disease-oriented language like "symptoms" in discussing autism. Although I have seen several articles that take the approach of citing research studies that show autistics to have superior cognitive and perceptual abilities in some respects, and then going on to argue that it does not make sense to describe superior abilities as symptoms, I think that's a dubious approach because identifying superior abilities is not a scientific way of determining whether or not something is a disease or disorder. Rather, it depends on how society values the particular set of abilities being measured, which is based on the cultural expectations of the majority population. If autistics were in the majority, for instance, it's likely that written language would be valued more highly than speech, and being chatty might be labeled a symptom of a disorder.

Ultimately, whether or not something is a disease or disorder isn't a matter of scientific fact, but is instead a social value judgment on the desirability of the characteristics at issue. In the book Unstrange Minds, cultural anthropologist Roy Richard Grinker makes this point quite clearly (page 11) when he states that "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..."

Throughout history, diseases have been defined as a matter of popular consensus. Often, as with cancer and influenza, it was based on simply observing that people were dying or in serious pain. In other instances, cultural beliefs led to the popular acceptance of such things as demonic possession and witches' curses. But although modern medical science has studied many conditions in great detail, identifying their particular characteristics to an extent unimaginable in more primitive times, the underlying determination of whether or not something is a disease is no less a cultural one.

So there's really no way to prove by scientific means that autism is, or is not, a disease or disorder. The argument against using language based in the disease model is fundamentally one of ethics: Should a group of people be labeled as disordered if they themselves do not agree with that characterization? This is the same argument made a few decades ago by gay rights activists who successfully argued against the medicalization of homosexuality, and society ought to respond to it in the same way.

Money Speaks

2009-09-15T13:49:00.003-04:00

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.

Susan Moreno of MAAP, Cassandra Cult Recruiter

2009-09-08T10:36:00.002-04:00

Now that the hate group FAAAS has been quite thoroughly exposed on numerous Internet sites with regard to its nasty claim that autistics are unfit for family life, there hasn't been much obvious activity from its supporters in recent months. Unfortunately, that does not mean Cassandra adherents in the United States have come to their senses; it simply means that their propaganda efforts have gone underground, so to speak.

A conference entitled Knowledge is Power will be presented on October 10-11 in Kansas City by MAAP Services and the Autism Asperger Publishing Company. One of the scheduled activities is a "spouse workshop" by Susan Moreno, director of MAAP, and consultant Julie Donnelly. Autistic individuals will be excluded from this workshop, according to its description, so that "candid discussions" can take place.

Presumably Ms. Moreno thought that by avoiding any mention of Cassandra or Maxine Aston or FAAAS in the conference materials, she could entice unsuspecting spouses to sit through a presentation of their repulsive ideology, while also flying under the bloggers' radar. However, as we all know, a person's associations can be quickly searched with a few keystrokes. Take a look at this page on the FAAAS website detailing the content of a previous Moreno-led spouse workshop (as usual, it's a partial URL because I don't give active links to their hate site).

faaas.org/doc.php?40,288

After claiming that autistic people commonly cause our spouses to suffer "embarrassment and isolation," the description of the previous workshop went on to state explicitly that it was a Cassandra presentation:

Cassandra Syndrome, Cassandra Affective Disorder or the Cassandra Phenomenon was named to describe the symptoms of stress (low self esteem, depression, anxiety, often seen in partners of individuals with an autism spectrum disorder. Other symptoms partners may experience include lethargy, loss of libido, changes in mood and a weaken immune system. CAD was named after a mythical princess who was granted the gift of prophecy but cursed with the fact that no one would believe her even though she was right. Experts such as Maxine Aston feel it is brought on by emotional deprivation.

After highlighting the above issues in the presentation successful techniques and strategies to address these issues will be presented…

I've noticed that recruiters for the Cassandra cult always follow the same basic script. First, they lure non-spectrum partners into relationship workshops from which the autistic partner is excluded; after that, they lead a group whinefest complaining about all the faults, real and imagined, of autistic partners; and then they finish the presentation with a hard sell for Cassandra books and future workshops, which they claim are absolutely essential to recovering from the hideous depression and misery caused by living with an autistic partner. Never mind the pesky little detail that their marks weren't feeling particularly depressed or miserable before the Cassandra gang got them in its clutches.

This is pretty much the same modus operandi followed by exploitative cults of all sorts. Cult indoctrination tactics generally begin with deception of the potential recruit, such as by describing a workshop or other presentation in very bland and innocuous terms, so that he or she doesn't suspect there is anything out of the ordinary going on. The next step is isolating the person from family members, such as by holding an event in an out-of-the-way location where telephone use is not allowed, or (as with Susan Moreno's workshop) by specifying that family members may not attend. The group leader then encourages recruits to vent about their problems, for which the cult's ideology is presented as the only real solution, while becoming increasingly emotional about it. Because of the social pressure to agree with the group, the highly charged emotional language, and the isolation from family, the recruits end up being much more vulnerable to the cult's sales pitch than they might otherwise have been.

The way to counteract such groups' influence is, of course, to shine a very bright spotlight on their devious schemes and make those cockroaches go scuttling for cover. To any of my readers who might have been thinking about attending the conference, I suggest that you stay away; MAAP doesn't deserve a penny of your money. If you have a friend or family member who is considering going, warn them about the spouse workshop. And if you have already registered or have a specific reason to attend, well, then, you may want to stop by the spouse workshop for a few minutes and give Susan Moreno and Julie Donnelly some candid discussions of quite another sort.

After all… knowledge is power.

Our Big Fat Intolerant Society

2009-09-01T15:44:00.006-04:00

An article in Newsweek addresses the issue of why there is so much prejudice against heavy people in the United States, even though most of the population is either overweight or obese. The authors observe that weight gain is generally seen as a consequence of personal failings such as gluttony and lack of willpower, even though a modern sedentary lifestyle makes weight management quite difficult and many people have a genetic predisposition toward obesity. Some of the hostility toward the obese, they suggest, could be misplaced anger arising from the frustration that many people feel as a result of struggling to lose weight. People tend to attribute their own failings to their circumstances, while blaming others for having made bad choices. And there's also a bit of general mob mentality thrown in, the authors conclude:

What is it about fat people that makes us so mad? As it turns out, we kind of like it. "People actually enjoy feeling angry," says Ryan Martin, associate professor of psychology at the University of Wisconsin, Green Bay, who cites studies done on people's emotions. "It makes them feel powerful, it makes them feel greater control, and they appreciate it for that reason." And with fat people designated as acceptable targets of rage—and with the prevalence of fat people in our lives, both in the malls and on the news—it's easy to find a target for some soul-clearing, ego-boosting ranting.

The authors also point out that public statements and articles describing obesity as a burden to the health care system have contributed to a widespread perception that the obese are consuming more than their fair share of resources. At the end of the article, health policy expert Deborah Levine is quoted as stating that although the goal of efforts to raise awareness about obesity as a medical problem has been to fight obesity and not obese people, "it's very hard for many people to disentangle the two."

When I read this article, I was struck by how closely it parallels what autistic rights activists have been writing about the "war on autism" rhetoric and the use of cost statistics in awareness campaigns. One might say that the human species has not advanced as far beyond primitive tribalism as we like to think. When social issues are framed in terms of battling against a dangerous enemy, such language incites fear and anger on a mostly subconscious level. We react instinctively as if we were our prehistoric ancestors going to war to defend the tribe's scarce resources against invaders.

It's not simply, as the article suggests, that people scapegoat and attack unpopular minority groups just because we "enjoy feeling angry." Somewhere in the less evolved depths of our brains, we actually feel that we are righteous warriors protecting the tribe. Because battlefield imagery evokes such strong emotional responses, it works very effectively as a tool of demagogues and unscrupulous fundraising campaigns. Logical arguments often fail to have any effect in countering such rhetoric because of its inherently irrational nature.

So what's the answer? Well, frankly, I think our society needs to grow up—to become self-aware enough so that we can avoid being manipulated by propaganda of this sort. With just a smidge more maturity, it shouldn't be too difficult to comprehend that autistics, the obese, and other stigmatized groups are not wicked enemies stealing our resources. Rather, they are our neighbors, our co-workers, our family members—and, quite often, ourselves.

Senator Dick Durbin Urges Employers to Hire Autistic Workers

2009-08-25T20:21:00.004-04:00

As reported by the Justice for All disability rights blog, Sen. Dick Durbin, who currently holds the influential position of Senate Majority Whip, recently spoke at Illinois Wesleyan University regarding equal employment opportunity for people with disabilities. He discussed the high unemployment rate in this population and urged employers not to let myths and stereotypes affect their hiring decisions, pointing out that the cost of providing workplace accommodations is very low and that the most common request is for flex time, which costs the employer nothing:

...hiring workers with disabilities is not an act of charity. The companies that learn first how to recruit and retain talented employees with disabilities are going to have an advantage in the marketplace. They are going to have a wider choice of employees to choose from when it comes to filling critical vacancies.

Sen. Durbin went on to speak about autism in particular, mentioning that some characteristics of autism can contribute to professional success. He quoted economist Vernon Smith, who won a Nobel Prize in 2002 and who has attributed his success in part to the autistic capacity for deep concentration and willingness to explore unconventional approaches. While observing that not all autistics can achieve this level of success, Sen. Durbin stated that autistics and others with disabilities can contribute to society in various ways, and he further quoted Smith on neurodiversity:

Vernon Smith... compares the struggle for disability rights to the struggle for civil rights. He says: "We’ve lost a lot of the barriers that have to do with skin color and various other characteristics. But there’s still not sufficient recognition of mental diversities." He adds, "We don’t all have to think alike to be communal and to live in a productive and satisfying world."

Ripping, Running, and Advocating

2009-08-21T11:44:00.002-04:00

Like many people, I usually get busy toward the end of the summer and have a lot of distracting errands that interrupt my routine; there's an expression "ripping and running," which describes such days. For others who might also have been busy and not had the time to put together comments for the Interagency Autism Coordinating Committee (IACC), I'm taking a few minutes to post this quick reminder that IACC comments are due today. (Details here.)

Even if you don't have time to write long detailed comments, please take a few minutes to put something together. It's important to make sure we get enough responses from self-advocates and pro-neurodiversity allies that the IACC knows it can't just ignore us. If you're stuck wondering what to write, here's a link to last year's ASAN comment, which has some useful talking points.

Edit: Here's a guest comment (thanks Katie!) to show how creative some of our folks are.

By Katie Miller

I did mine this morning. Here is a humorous excerpt:

What are the new opportunities and needs for advancing research and knowledge about ASD in section IV. "Which treatments and interventions will help?"

Instead of wasting money to prove once again that vaccines are not linked to autism, I think you should study why people believe in conspiracy theories, and what we can do to cure and prevent it. Research treatments and interventions that have helped holocaust and AIDS deniers. Establish a genetic bank of conspiracy theorist cell and tissue samples to identify risk factors and eventually lead to prevention and/or cure. Is believing in anti-vaccine theory linked to intelligence, emotional instability, or other genetic risk factors? Does it strike all populations equally? What can we do to help these people have a better quality of life? It is an enormous financial and psychological burden to care for an anti-vaccine theorist. The money they spend on dangerous, ineffective treatments for their children is enough to bankrupt a family, costing over $4 million across the lifespan of the theorist. Their numbers are increasing to epidemic proportions. Action is needed now.

End of Week Stupid Roundup

2009-08-14T21:09:00.008-04:00

Sometimes the stupid runs so deep that instead of blogging about it, I just want to scrape up its stinking carcass with a shovel and chuck it into the woods to rot in peace. For instance, it ought to be obvious to everyone—except the most prejudiced jerks—that the fact that mass murderers are antisocial creeps does not mean they are autistic. However, looking at the comments on a recent post on Sarah's blog goes to show that there's no shortage of prejudiced jerks.

And where might one expect to find an article that advocates killing off people with disabilities to save money for health care for everyone else? If you guessed a neo-Nazi newsletter or a Klan website, that would be a logical enough guess, but wrong. Actually, to the great disgust of many, it appeared in the New York Times Magazine. You know, when governments run short on money for highway maintenance, you don't see mainstream publications printing articles that suggest killing off rural folks to save the wear on the roads... and when the fire department needs a new truck, nobody proposes whacking a few smokers to reduce the number of fires...

Did you think we'd seen the last of billboards describing autistic children as kidnap victims when the Ransom Notes ads were taken down in 2007? Well, as Joe just blogged, there's plenty more of the putrefying stupid where that came from. This time, the culprit is the York, PA chapter of the Autism Society of America. E-mail address is pa-york@autismsocietyofamerica.org and the chapter president is Amy Wallace. Time to let her know what we think of that tired old stolen child changeling garbage.

Edit, August 16: ASA York has agreed to take down the billboards—many thanks to ASAN and to everyone who wrote about the billboards!

A Bit of Neighborly Advice

2009-08-08T11:42:00.004-04:00

Guest post by Rita Skeeter, award-winning journalist and ultra-reliable source for all the dirt you've ever wanted to read.

Whilst slumming in the dismal wasteland that is Muggle television, I came across an ad by Autism Speaks called Neighbors, which makes the rather astounding suggestion that providing more therapies to autistic children would result in their having more friends. This can be done, according to the ad, through insurance mandate legislation.

Now, some therapies ought indeed to be made more widely available. Physical, occupational, and speech therapy can be very helpful to many children. In magical society, it's a matter of considerable importance to ensure that our little ones are provided with these therapies at an early age, if the need arises. After all, the study of witchcraft and wizardry can be quite difficult if one cannot hold magical objects firmly and recite spells clearly. If a young Hogwarts pupil stumbled over the words of an incantation, she might end up turning her hair into snakes, or something equally unpleasant. Even after the spell was reversed, I found it dreadfully scaly and hard to comb for weeks afterward. But I digress.

To be nothing but Muggle pretenders, Autism Speaks and Dr. Lovaas certainly have an overinflated idea of their own abilities. If there really were some sort of alchemy that could magically transform anyone into a friend, well, we'd all be drinking tea and playing friendly games of Quidditch with He-Who-Must-Not-Be-Named, and I expect I'd be out of work. Granted, there are love potions and such, but they soon wear off. Turning people into true friends is a matter of time, effort, and shared interests—not of aping their mannerisms. There are no shortcuts or magical behavioral charms.

Besides, we all know why some children have no interest in befriending certain others, don't we? It's the same reason why so many witches and wizards from our most illustrious families have no use for Mudbloods—plain, simple, old-fashioned prejudice. There's no way to magically transform intolerance into something else by putting its targets in behavioral therapy for several hours a day, either. If the goal really is that all children should be friends and play happily with each other in their neighborhoods—well, they're going to have to be taught to accept and appreciate diversity, rather than excluding and abusing those who are different.

As long as we are on the subject of teaching children not to abuse others, if your little horrors—er, I meant to say little darlings—are the sort who like to stomp on insects, you should teach them to show kindness to all God's creatures. Even a beetle can suffer a nasty case of post-traumatic stress when it comes within millimeters of being squashed by a little boy's wretched smelly shoe. Especially if the beetle just happens to be an Animagus—not that I would have any firsthand experience of shape-shifting, of course…

Rex Reed Spouts Disgusting Bigotry

2009-07-31T17:09:00.008-04:00

For those who are fortunate enough never to have heard of the jerk, Rex Reed is a movie critic with a history of making ignorant and prejudiced remarks. His latest attack, in a review of the movie Adam in the New York Observer, is beyond the pale:

Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves...

…It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

observer.com/2009/movies/hugh-dancy-his-way-superstardom

(as usual, I do not post active links to hate speech; you'll need to copy and paste into your browser)

Perhaps nothing better should have been expected from Reed, whose past history amply—and quite ironically—demonstrates how little he cares about others' feelings, etc., especially if those others happen to belong to a minority group. But the Observer certainly should have known better than to print such a revolting display of bigotry, in total disregard of every modern code of journalistic ethics.

Time to fire up those keyboards, folks, and write to editorial@observer.com to let the Observer know what we think. As indicated on their website, letters should be addressed "To the Editor," must include the writer's address or telephone number, and should not exceed 250 words.

Edit, August 18: In response to pressure from ASAN, working with self-advocates and parent allies, FOX Searchlight has taken down its link to the Rex Reed review. Way to go! They really ought to go farther and condemn the review, but it's a start...

IACC Season Again

2009-07-29T23:42:00.007-04:00

Otherwise known as the season when good patriotic folks go hunting for ignorant anti-autistic prejudice in the US government, armed (figuratively, of course) with everything from bows and arrows to Thelma's shotgun. For those who have been wondering, I am not an author of that blog, but it does crack me up.

The dates for IACC comments are not actually the same each year, or even in the same season. I still haven't figured out if the committee members are just hopelessly disorganized or if it's some nefarious plot to confuse the auties. Anyway, I've reposted the commenting notice below. As usual, I hope my readers will make it crystal-clear to the IACC that there will be Nothing About Us Without Us.

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the National Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act. The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members. The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders. The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?
II. How can I understand what is happening?
III. What caused this to happen and can this be prevented?
IV. Which treatments and interventions will help?
V. Where can I turn for services?
VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record. You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

Context and Consequences

2009-07-25T13:21:00.004-04:00

In response to a recent guest post in the New York Times "Motherlode" blog, which used language such as "nightmare" to describe raising an autistic child, blogger Sarah of Cat in a Dog's World wrote an e-mail pointing out that such descriptions were hurtful to autistic people reading them. Her reply was published as a separate article on Motherlode and received numerous comments, some of which suggested that the mother who wrote the original guest post should not be criticized for honestly expressing her feelings and that it was natural for a parent to feel stressed by a child's disability. Sarah then wrote an entry on her blog in which she explained that she was not accusing the mother of intentionally trying to harm the child; rather, she was addressing the broader issue of the impact of such words in a culture that frequently represents the existence of autistic people as a burden and tragedy.

Looking at these posts and comments, I was reminded of a news article I read many years ago about five little Korean girls who attempted suicide because they felt unwanted after a younger brother was born into their family. The sisters overheard their father, on many occasions, talking about how glad he was to finally have a son after so many years of having had only daughters. Believing that their father did not value them as they were, the girls concluded that he would be happier if they were dead.

The reporter did not interview the father for the article, but I would guess that he did not in fact have any ill-will toward his daughters and that he was horrified by what happened. He probably never had any idea that his daughters could feel hurt by his words; after all, wasn't it entirely natural for a father to want a son?

And indeed, many parents want children who are like themselves—whether we are talking about a father who longs for a son, a ballet-loving mother who wishes her athletic daughter were more feminine, or a non-autistic parent who would prefer a highly social child. Having such expectations is not at all unusual, and parents often do find it stressful and confusing when a child turns out to be different from what they had anticipated.

In most such cases, the prevailing cultural expectation is that the parents will quickly put aside their feelings of disappointment and accept the child that they actually have. Descriptions of life with a child who differs from one's expectations as a "nightmare," or similar extreme language, would not as a general rule be considered socially acceptable and would not appear in the mainstream media unless the article had to do with learning to appreciate and value a child's differences. The potential for harm would be immediately recognized.

But as Sarah's blog entry discusses, although modern society has recognized as a general rule the importance of understanding and accommodating diversity, the autistic population often does not get the benefit of the rules that apply to everyone else. Numerous articles have described autistic people in derogatory terms that would never make it into print if applied to any other minority group. The excuse usually given for publishing such articles is that parents naturally feel that way.

It's not a very good excuse.

Turnabout

2009-07-23T18:28:00.000-04:00

In my last post, I described a phone conversation involving a Cassandra group leader who saw nothing wrong with diagnosing a woman's husband with Asperger syndrome over the phone, based entirely on the wife's description of their marital problems and without ever talking to her husband, who was in fact not autistic.

There's more to the story. The husband separately contacted a Cassandra counselor, who was closely affiliated with the person to whom his wife had spoken. He described the problems in their marriage from his point of view. The counselor told him that she understood completely and that his wife's undiagnosed Asperger syndrome was clearly the cause of all the difficulties in the marriage. (In reality, she's not autistic either.)

The counselor invited the husband to attend a partner support group meeting to gain more insight into what he could do to alleviate his suffering from Cassandra disorder. Once there, he was encouraged to tell the group all about his wife's inability to understand how normal people felt, the misery that her affliction had brought upon him, and so forth. The group members told him that they had sympathy and compassion for him and that sharing his experiences was a necessary part of healing. Then they ranted about how incapable their own spouses were of giving them any emotional support.

And of course, nothing said could be disputed, no matter how hateful or absurd, as it was so important to validate the experiences of the poor Cassandra sufferers who had endured so many years of never being believed…

Cassandra Promoter Punked

2009-07-20T09:42:00.003-04:00

I recently learned via e-mail that a Cassandra group leader was drawn into a long and very revealing conversation by way of a prank phone call from a neurodiversity supporter. The woman who made the call pretended that she thought she might be suffering from CADD because of her husband's undiagnosed Asperger syndrome. (In fact, he is clearly not autistic.)

She accurately described problems at various times in their marriage and her feelings of stress and depression. The Cassandra counselor assured her that all of her experiences were very typical of women in relationships with AS men and that there was no doubt her husband (whom the counselor had, of course, never met) had AS.

Like all such men, he was incapable of understanding his wife's feelings because of his disorder, the Cassandra group leader declared authoritatively. It wasn't his fault of course, but he had no empathy. That was the reason for all her suffering. To get on a path to healing, she would have to learn more about CADD and start taking back her life from the havoc caused by her husband's tragic disorder.

And of course, there would be many workshops, books, DVDs, etc., available to help her on this long journey, all quite affordably priced…

The Pinocchio Podcast

2009-07-14T16:34:00.003-04:00

For my readers' amusement, I've put together a short list of famous lies in recent history:

-- Bill Clinton, "I did not have sexual relations with that woman," 1998.

-- Richard Nixon's denial of any knowledge about the Watergate break-in, 1972.

-- Barry Bonds' claim that he never used steroids, 2003.

-- Tony Attwood, in Donna Williams' recent podcast, only slightly exaggerated for parody purposes: "I have never used the term CADD, and anyone who says otherwise is a militant extremist and jealous of my success, and it was just too hard for me to find Ari Ne'eman's very prominently posted contact information."

Gee Tony, do you think your nose will still fit through the conference center doors?

A Brief History of Cassandra

2009-07-09T15:28:00.005-04:00

As Tony Attwood begins his US speaking tour at a conference in Hartford, Connecticut, where he is scheduled to appear tomorrow, autistic rights advocates from ASAN New England are making it clear that the bogus concept of "Cassandra Affective Deprivation Disorder" is discrimination based entirely on neurology and that the autistic community cannot stand for that.

Because some people are still wondering what the controversy is about, I'm providing a brief explanation of the history and nature of this purported disorder, directly from a primary source: The Asperger Couple's Workbook (Maxine Aston, Tony Attwood; Jessica Kingsley Publishers, 2009).

Chapter 9 of the book (viewable in part through Google Books) explains that the term "Cassandra" comes from a Greek myth and refers to a prophet who was cursed with never being believed. You can find more information here about the Cassandra story and the actual characteristics that were attributed to Cassandra and Apollo in classical mythology. I've quoted a short excerpt (which is fair use under US copyright law) from the book below:

"This feeling of not being believed is typical of how many NTs feel when living with a person with undiagnosed Asperger Syndrome.

Over the years the terminology for the effect of Cassandra has changed. Before Cassandra it was referred to as the mirror syndrome by the Families of Adults Affected by Asperger Syndrome (FAAAS) and then referred to as the Cassandra phenomenon (Rodman 2003). Terminology has since progressed from Cassandra affective disorder and now more appropriately Cassandra affective. The Cassandra phenomenon was first made public at the Families of Adults Affected by Asperger Syndrome (FAAAS) conference in 2003 as Cassandra affective disorder (CAD) (Aston 2003b) and finally Cassandra affective deprivation disorder (CADD) (Aston 2007).

…CADD is the result of emotional deprivation due to the fact that one partner, affected by Asperger syndrome, is unable to provide the emotional support the NT partner needs to stay healthy within the relationship."

It bears repeating that no legitimate research has ever been conducted to support "Cassandra Affective Deprivation Disorder." Maxine Aston simply made it up. Although it's likely that she never would have gotten into print and would have been widely dismissed as a crank if she had made such claims on her own, her association with Tony Attwood over the years has enabled her to feed off his professional reputation and thereby gain an appearance of credibility.

And sadly, judging by Attwood's continued unwillingness to repudiate the crankery and bigotry of Aston and FAAAS, it seems he's a willing participant in their schemes.

Dowries, Trust Funds, and Independence

2009-07-04T14:58:00.004-04:00

I read an article by Kristina Chew yesterday discussing new legislation in West Virginia that will give tax credits to parents who contribute to trust funds for their autistic children's support as adults. Autism professional Barbara Becker-Cottrill gave an interview discussing parents' worries about what will happen to their children as adults, stating that trust funds can provide families with a sense of security.

In seeking to help families who worry about their children's future, this legislation addresses what has become a widespread concern. Because today's society is so poorly adapted to the needs of its autistic citizens, a trust fund often can be a reasonable option. I once wrote a post on this blog suggesting that parents who were spending large amounts of money in pursuit of miracle cures would be much better advised to put that money into trust funds instead.

From a broader cultural perspective, however, the idea that it could become routine to create a trust fund for the lifelong care of every autistic child leaves me feeling very uneasy. Such a system would be based on the assumption that children labeled autistic could not become self-supporting. By characterizing autism itself as the sole source of the problems encountered by autistic people in our culture, this would divert society's attention away from the many areas where it ought to be focused—miseducation, discrimination, ignorance, and lack of suitable accommodations. These are not the result of autism, but of socially constructed prejudice.

The practical effect of such a system would resemble the old custom of providing a dowry for a daughter so that she would not be left destitute if her husband died. In those days, it was taken for granted that a woman was not capable of supporting herself. Being an independent woman, to the extent that it was possible to be one, meant having inherited money from a husband or other male relative.

For many of us in the modern world, it's hard to imagine that there was once a time when a young girl, simply because of her gender, was thought to be inevitably destined to a lifetime of never being able to provide for herself. That idea seems absurdly primitive now. And yet, there are many people today who see nothing wrong with making the same assumption about a young autistic child. As we celebrate Independence Day here in the United States, I'd say that it is time to give that assumption a lot more critical scrutiny.

Another Resignation at Autism Speaks

2009-06-30T18:30:00.004-04:00

From Dr. Eric London.

Dr. Eric London has announced his resignation from the Autism Speaks Scientific Affairs Committee. London is the Director of the Autism Treatment Laboratory at the New York State Insitute for Basic Research in Developmental Disabilities. He is also Director of the New York State Autism Consortium and a member of the Autism Science Foundation's Scientific Advisory Board. He is the co-founder of the National Alliance for Autism Research (NAAR).

Dr. London's letter of resignation is below:

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert—that the parents need even further assurances and there might be rare cases of "biologically plausible" vaccine involvement—are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents' doubts. By preferentially investing and advocating for the use of limited financial resources on the "biological plausibility" argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks' misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely,
Eric London, MD

Tony Attwood FAAAS Poetry Slam

2009-06-23T17:04:00.003-04:00

There has been a lot of discussion on Wrong Planet and other sites about ASAN's petition calling on Tony Attwood to stop associating with FAAAS and Maxine Aston, to which Attwood replied by attempting to defend those associations via a form letter on the FAAAS website and other places. ASAN reposted and critiqued the letter, and by now this online war of words has been going on for two months. Attwood still hasn't seen fit to simply pick up the phone and call Ari Ne'eman, which gives the rather unfortunate impression that he can't bring himself to speak with a self-advocate as an equal.

As several people have pointed out, the petition was never intended as a personal attack on Tony Attwood, but as a constructive criticism. To be clear, my posting on the subject isn't motivated by any grudge either; in fact, I have to give him credit for his high level of energy, chutzpah, and crowd-pleasing skills. He is a masterful promoter. Because he has been so successful in positioning himself as a trusted figure in our community, however, I feel very strongly that Attwood has an ethical responsibility not to abuse that trust by associating with those who would harm our community.

The content of his website clearly reveals that such associations are still ongoing. As of today, a Google search showed 39 results for FAAAS on Tony Attwood's website. On one of his pages, Attwood touts an anthology of horrid poetry and essays called "The Book of FAAAS," which includes an article comparing autistics to prickly cacti and their non-autistic partners to wilting affection-starved roses. I'm not going to quote from it, out of consideration for readers who might not have a barf bag handy.

But it got me thinking, why should FAAAS have a monopoly on bad writing and ridiculous analogies? As I see it, we should create our own collection of sorta kinda poetic stuff making clear what we think of the situation. Feel free to post 'em in the comments, dear readers. Literary talent is definitely not required. Here's my contribution to get things started:

SKUNK CABBAGE

In yonder swamp skunk cabbage grows,
With shiny leaves of gleaming green.
The stench makes plain it's not a rose,
No matter how much it may preen.
Its foul reek assails the nose,
And many voices call for change.
Will Attwood listen? No one knows.
His lack of action's mighty strange.

Rethinking Autism in Vanity Fair

2009-06-21T10:38:00.003-04:00

Vanity Fair has a short article about a new website, Rethinking Autism, which can briefly be described as a satirical pro-neurodiversity site featuring sexy videos that mock celebrity endorsements related to autism. These clever videos are a perfectly targeted and totally hilarious send-up of a certain former Playboy bunny's autism profiteering, and they had me rolling on the floor laughing. I've reposted one of them below. Jenny, you've met your match this time.

Autistic Parents: Not Such Rare Birds

2009-06-11T19:39:00.001-04:00

Melody, the administrator of the AS Parenting website and forum, has announced that she is seeking new members and contributors. The site had been inactive for the past few months because of her family's move to Dallas. She says that she envisions the site as "all encompassing. Not only for parenting tips, but general life tips and for policy/politics."

I hope that those of my autistic readers who are parents will consider participating in this very worthwhile effort to provide an online community and positive resources for parents on the spectrum. At present there is a great dearth of such resources, not because autistic parents are uninterested in them or exist in numbers too small to benefit from them, but because the widespread stereotypes to that effect have discouraged their development.

We've all seen claims that autistic parents are as rare as unicorns, but it's actually quite common for a parent to be identified as autistic after his or her child has been so identified. The flourishing autistic community on the Internet has made autistic parents, through their presence on websites, much more visible; I'll note that the Autism Hub alone has at least ten autistic bloggers who are parents. As for the small but vociferous group of haters in the Maxine Aston/FAAAS orbit who contend that many children are growing up neglected by autistic parents, their unfounded stereotypes also can be effectively rebutted by the existence of positive parenting communities like AS Parenting.

It's pretty hard to stereotype autistic parents either as near-nonexistent or as cold and unfeeling when many of them are actively posting on parent community forums and seeking advice on their kids' playdates and homework, just like their non-autistic neighbors in suburbia.

FAAAS Social Work Seminars: Lessons in Hate

2009-06-03T19:45:00.018-04:00

Before I slog once again into the fetid swamp that is FAAAS, I'm first going to mention a recent advocacy success in Maryland, where new legislation has been passed to safeguard the rights of citizens with disabilities regarding child custody and adoption proceedings. The fact that a person has a disability, whether mental or physical, now cannot be a reason for finding that the person is unable to care for a child, in the absence of specific evidence relevant to the family's circumstances and the child's best interests.

Meanwhile, in the less enlightened state of Massachusetts, which is ground zero for the hatred and destruction of families wrought by FAAAS, true believers in Maxine Aston's Cassandra cult are teaching continuing education seminars that indoctrinate social workers to treat autistics as defective and unfit to live in families. FAAAS member Harriet Simons regularly teaches such seminars at the Massachusetts School of Professional Psychology, such as this course in April. A similar program was presented in December by Grace Myhill, a social worker who is currently leading Aston-based support groups that are, to my great disgust, sponsored by the Asperger's Association of New England (AANE). Here's a link to the program's ugly content, from which I quote briefly:

"When a woman attempts to work through a problem in the relationship, the man with AS may respond to his partner’s feedback, expectations, requests or demands with denial, withdrawal, or even verbal or physical abuse. His rage or depression, problems with stable employment, or limited ability to parent then become additional stressors for the wife."

Nasty stereotypes like this have a long history of leading to actual discrimination against people with disabilities, including the serious issue of discriminatory treatment in child custody matters that the Maryland law addressed. Those who call themselves autism advocates while endangering our families by promoting the bigoted views of FAAAS and Maxine Aston in their associations, such as Dania Jekel of AANE and Stephen Shore (who recently wrote the foreword for Kathy Marshack's repulsive book that compares a relationship with an autistic person to living in prison, a war zone, and "a black hole of nothingness"), should be aware that they do so at the risk of losing whatever respect they might have had in our community.

Edit, June 4: I have just been informed that an Australian law firm, LAC Lawyers, has a page on its website advertising family law services "for people who have been affected by someone with Asperger's" and quoting extensively from the Potential for Abuse article that was recently removed from the ASPIA website in response to international condemnation.

http://www.laclawyers.com.au/legal/Asperger%27s-Syndrome.aspx

To take action against this blatant appeal to prejudice and disability stereotyping, I've provided a link to a site that explains how to file professional disciplinary complaints against lawyers in New South Wales.

A Diagnostic Label Is Not an Insult

2009-05-29T19:56:00.007-04:00

At best, a label is a means of enabling people to get useful services for their particular needs. Although the system does not always work as it should, at the very least a label ought to be simply a descriptive term, rather than being used as an insult by people who do not have the diagnosis. Unfortunately, we all know that such language is used all the time:

"That was such a retarded thing to do."

"He's so clueless, what is he, autistic or something?"

"You're acting like a total spaz."

Now, I'm fairly sure that most of the people who talk like this are being thoughtless, rather than intentionally hateful. If they had ever considered the possibility that they might be overheard by someone who actually had a diagnosis of Mental Retardation, or Autism, or Spastic Cerebral Palsy, they'd have chosen their words more carefully. But such language is so widespread in our society that millions of people just repeat it without thinking about it.

And then there's what I would call the flip side of using a label as an insult: Taking great offense to any criticism of one's behavior, out of fear that others might suspect that one has Big Bad Behavioral Disorder Cooties. Here are a few examples of that:

"How dare you slander me by saying that I have problems controlling my temper! I'm perfectly sane and nothing at all like Those People who go to anger management counseling!"

"Someone told me I was being passive aggressive in a conversation. I'm extremely insulted by that because there is an official psychiatric category of passive aggressive personality disorder."

"What do you mean, I'm too defensive? Are you suggesting I'm some kind of psycho?"

Once again, I think that in most such cases, it's a matter of thoughtlessness and not outright hate. The person who took such umbrage to the words "passive aggressive" probably never stopped to consider the social implications of insisting so vehemently that she wasn't at all like those with an official diagnosis. I'm sure it never even occurred to her that by equating a diagnostic category—which no one had suggested that she actually belonged in—to an insult, she was adding to the stigma against those who really were diagnosed in that category. That's often the way stigma works; it's like a children's game of Hot Potato, where everyone is so anxious to get it away from themselves that they don't care who ends up with it.

Sometimes, people just need to stop and think before they speak.

Lovaas Safari Tours at Erik's Ranch

2009-05-18T12:51:00.006-04:00

Guest post by Rita Skeeter, award-winning journalist and ultra-reliable source for all the dirt you've ever wanted to read.

You're probably wondering what a journalist of my incomparable reputation is doing on a lowly Muggle blog. Well, yesterday while I was working on a much more important article about the Ministry of Magic's investigation of marauding trolls in the countryside, I just happened to come across a blogger trying to fight off three trolls who had been lurking under a bridge. Of course, all I had to do was flap my lips a few times, and the trolls ran away screaming. I don't know why you inept Muggles can't manage that.

Out of the kindness of my heart, I took the blogger to a nearby tea shop and bought her a nice cup of tea to settle her nerves. Then I slipped a few drops of a truth potion into her cup when she wasn't looking. I never go anywhere without it, naturally. A few minutes later I had this blog's password, and I took the opportunity to do a bit of snooping. Well, wouldn't anybody?

In the drafts folder, I found a half-finished post about a proposed residential facility in Montana for autistic adults, called Erik's Ranch, whose advisory board includes the well known behaviorist Dr. Lovaas. Of course, he's not as well known as I am. Because I'm of the mind that all Mudbloods belong in institutions, I decided to rewrite the post to include a few of my own keen insights.

It seems that Dr. Lovaas' public image has been refurbished somewhat since the days when he boasted that he could cure autistic kids by slapping and screaming at them. Even the cleverly named Autism Speaks, which has never actually had any autistic people speaking for it, has jumped on the rickety old Lovaas bandwagon by touting ABA-centric autism insurance legislation. Now, I told the Wrights they ought to hire a witch or wizard to put a repair spell on that old bandwagon before the wheels fall off. Even a first-year Hogwarts student could do that. But did they listen to me? Nooooo, like all Muggles, they're much too full of themselves.

This morning, just because I don't like being ignored, I stuck a few pins into a voodoo doll where Suzanne Wright's heart ought to be. I still haven't figured out why it had no effect whatsoever. Not that I care what happens to anybody who's as incompetent as she is. I'll just point out here that You-Know-Who does a much more effective job of eradicating bothersome minority groups, as well as dealing with obvious Mudblood sympathizers like Brian Reichow of Vanderbilt University, who, along with his co-authors in a 2008 study, had this to say about autism treatment hype: “There have been a number of different reviews of evidence-based practices of treatments for young children with autism. Reviews which have critically evaluated the empirical evidence have not found any treatments that can be considered evidence-based.”

Humph!

Anyway, back to Erik's Ranch, which is described on its website as "a structured environment for lifelong learning that encourages participation by residents, and serves as a destination location to attract family and friends to share experiences with their loved one. The ranch will offer horseback riding, photo safaris and other ecotourism adventures…"

The website is full of nice warm fuzzy cheerful happy-sounding buzzwords like community, inclusion, and the often repeated phrase "lifelong learning." However, there's no mention of what happens when residents decide that they don't want to stay there lifelong. Too bad for them, I guess. They should've made more of an effort to become indistinguishable from their peers. Then they wouldn't have had to face the consequences of being, in the website's own terms, "children who didn’t make it to the recovery we all hoped for."

Residents will be given "work" opportunities (the website's authors are the ones who put the term "work" in quotes, which shows what they think of it) and will be placed in jobs as groundskeepers, tour guides, and other service positions. Visitors to the ranch will enjoy this fascinating opportunity to create photos and videos of the lovely Montana scenery and wildlife—and, presumably, of the curious behaviors of the savage autistic natives on the reservation. It'll be just like taking photos on an old-timey colonial safari a century ago, when the sun never set on the British Empire, and when nobody except common riff-raff cared about such foolishness as human rights and respecting the dignity of other cultures.

If I were in charge of running Erik's Ranch, though, I'd have better sense than to let the general public roam randomly around with video cameras. After all, what if a slapping and screaming incident, or some other abuse or molestation of a resident, ended up on the evening news? No hype-mongers worth their salt would risk letting their public image get out of control like that. It's all about careful manipulation of the media, people. But then Muggles can't be expected to have the natural journalistic savvy of a brilliant reporter such as myself. I figure they'll just have to learn the hard way.

Gotta run now—there's a hot new rumor about Harry Potter to investigate! I'll just put a Confundus Charm on this blog so that abfh will be too confused to notice the new post. Silly Muggles are always so easy to fool.

Morningside Elementary, St. Lucie School Board, Stop the Hate

2009-05-12T18:43:00.003-04:00

In September 1957, after a federal court had ordered racial desegregation of the schools in Little Rock, Arkansas, an angry white mob surrounded Little Rock High School in an attempt to prevent nine African-American students from entering the building. When Arkansas officials failed to restore order, President Eisenhower sent in federal troops to protect the students, who came to be known as the Little Rock Nine. While attending the school, the students faced vicious bullying not only from racist classmates, but also from some teachers and other school employees. One of the students, Melba Pattillo Beals, later wrote a harrowing memoir entitled Warriors Don't Cry.

While this may seem like ancient history and something that could never happen again, even now in the 21st century some families with autistic children are enduring bullying and harassment from bigots who want to segregate their children. Melissa Barton, who successfully brought a complaint that resulted in the suspension of the teacher who incited a group of kindergartners to vote her son out of class, has faced ugly retaliation as a result of defending her son. Her children also have been attacked by haters. I have reposted an open letter from Ms. Barton along with her appeal to the school board and superintendent for decency, proper enforcement of the law, and respect for her family's civil rights:

I am not sending this to you so that you may have sympathy for our family but be aware of what retaliation comes with defending your child. If this is happening to you as well, do not fear. A wise friend once told me: Wishing you a day without retaliatory behavior, if that is possible. One of my inspirational quotes from Gandhi to you: First they ignore you. Then they laugh at you. Next, they fight you. Finally, you win.

Since my defending Alex our family has been bullied beyond anything I could have ever imagined. The bullies are not children but their parents, teachers, law enforcement and a Vice Principal.

As I write this to you I almost do not know where to begin. First, my son Kyle who is ten is in the gifted program at the very school that treated Alex so cruelly. This is the only gifted program in my area so I have no other choice.

In the beginning of the year I received a letter from the principal of the school warning me to leave. Within a few days my ten year old had been pushed physically by the Vice Principal of the school right in front of me! The police said that there was nothing that they could do, then it happened again.......still nothing. Later, Kyle, my ten year old had been given grades that were not accurate after a letter from my attorney they improved within days ten points or more. In January, I received a notice from the school that they were pursuing a truancy case against me for Kyle who had only missed five days of school all with notes. The truancy officer was shocked to find that the school wasted her time and mine. During all of this I have been fighting for a IEP for Alex and battling the district for a FAPE under IDEA Law - still not one service to date - In February, Wendy Portillo decided to appeal her punishment as a teacher by the district : http://www.tcpalm.com/news/2009/jan/29/alex-barton-teachers-suspension-appeal-be-heard-mo/ The very night the above article came out in our local news, I received six hang up phone calls from the school number.

At the appeal for Wendy Portillo, teachers from Morningside heckled me and my oldest child infront of media. One teacher in particular seemed like he had mental issues and a breakdown was taking place in the parking lot of the appeal building. When I phoned police to speak to the School Resource Officer Division, I was treated very poorly and told that it was not their liability to protect my son at school.

I can handle the snares from teachers, staff and parents at the school. I can handle letters to our local news paper from parents at the school with nasty comments. I can handle calling the school and being hung up on nearly every time I call to speak about my son Kyle's education. But I have to draw the line somewhere:
Last Friday http://www.cbs12.com/news/barton-4717586-says-school.html

When I called the SRO to the school about the incident, she wrote a police report that was bias and claimed that there was nothing that could be done. She did not even question the other mother until late in the day as she felt it best to wait until she got off of work. In the report the SRO writes that I did not appear to be pregnant, although I am clearly six months along. The woman was never questioned about stalking me as she said she had been.

We have had police officers drive to our home and run the plate of visitors for no apparent reason. I have been followed by these same officers to and from the school every day. The SRO's Sargent referred to me as a con artist to a dear friend of mine and the list goes on and on.

But, it hasn't even gotten bad yet. Yesterday, I was forced to send the following email to the school board, and superintendent:

Mr Lannon, Mrs Renew and members of the board:

My name is Melissa Barton,

The reason I am contacting you today is a serious issue.

My oldest child Kyle Barton is a 4th grader at Morningside in the gifted program as it is the only one in my zone. From the beginning of this year there have been miscellaneous incidents with staff members at Morningside Elementary directed at my son Kyle due to a separate ongoing issue with my other son from members of Morningside and now parents of the school.

Recently a parent came up to me and told me that she had been following me. She also made threats to harm me and my unborn child on school property with no consequence to her. SEE: http://www.cbs12.com/news/barton-4717586-says-school.html

Today, I went to pick up Kyle from school as I do everyday, with my younger son in tow. When I arrived at Morningside I immediately was approached by a woman holding a picket sign ( I started to snap photos with my cell phone). As we pulled into the parent pickup line where all the children stand to wait to get into their parents cars my young six year old son with autism and I noticed several other possible parents/others holding picketing signs that stated "Our children love Morningside" "We love Morningside" and other like worded things regarding teachers at Morningside. This took place on school property just three feet or less from my son Kyle. One of the picketers heckled my young autistic son as he sat scared in the front seat of my car. My son Kyle got into our car with tears running down his cheeks. We also noticed was several staff members and one volunteer from Morningside standing directly next to the picketers. Of the staff I witnessed ESE Coordinator, Cathy Oliver and Patricia Gascogine, Assistant Principal names are the ones I know. Other staff were camped out just inside the doors of the school watching the protest about our family.

Here are my concerns:

Parents that are strangers were feet away from my son Kyle and other children making remarks about me while your staff stood idly by. Not only was his safety at risk but his mental well being as well. Additionally, these picketers on school grounds were taunting my autistic son as we drove past to get Kyle. These actions will impact my children for years to come.

I sincerely hope you consider this to be a VERY SERIOUS occurrence and take the appropriate measures to make sure it never happens again in your district and to make an example in general of the staff like Mrs. Oliver and Mrs. Gascogine. There is something seriously wrong with the picket being allowed take place while staff stand by and do nothing all on school grounds.

I am sickened, outraged and utterly beyond words. This is not only morally wrong but legally as well.

I expect to be contacted within the next three school days with an apology for my children and what steps you are going to take to discipline the staff involved and prevent those parents involved from coming onto school property for the purpose of bulling, harassment or retaliation.

I hope we can expeditiously come to an agreeable solution.

Sincerely,

Melissa Barton

Turning Trolls into Stone

2009-05-08T16:24:00.007-04:00

… or, failing that, into cash.

Last year, Barack Obama's campaign website attracted a very active and enthusiastic blogging community that encouraged visitors to support the campaign. There was just one problem: Trolls who visited the site to post negative comments on the blogs. On such a busy website, it wasn't practical to identify and delete all posts from trolls, and putting comments in a moderation queue would have interfered too much with the free-flowing discussion.

So the community came up with an innovative solution: Respond to the trolls not by arguing with them, but by making additional donations to the campaign. Whenever a troll showed up and wrote a negative comment, several regular posters would promptly respond by informing the troll that they had just made an extra donation in his/her honor. This had a salutary effect in convincing the trolls to take their disruptive attacks elsewhere.

I've been inspired to start a similar effort in the autistic community as a result of some particularly egregious rabble-rousing attempts by the usual cast of suspects. After they learned that Ari Ne'eman of ASAN will be featured in an upcoming Newsweek piece, Jake Crosby at Age of Autism and John Best at Hating Autism, along with a few other ignoramuses of the blogiverse, went into furious tirades urging their readers (what few they have) to write to Newsweek and complain. John Best, who somehow hasn't yet been locked up despite his long history of inciting terrorism, also made a death threat against Ari just for kicks.

Instead of just getting mad about it, I think it's high time for us to get even. So I'm encouraging everyone who supports neurodiversity and ASAN's advocacy efforts to take part in a new anti-troll initiative: Whenever you see ignorant drivel from the haters, make a donation to ASAN to help educate the public, and post about it on blogs and forums to let others know that we're fighting back against the trolls. I've just mailed a contribution of $ 50 to ASAN to kick off this campaign (that's $ 25 for each of you, Jake and John) and I also created an anti-troll fundraising page on change.org for online donations, as well as a pledge to support this effort. ASAN's mailing address is 1025 Vermont Avenue, NW, Suite 300, Washington, DC 20005, for those who prefer to donate by check.

In addition, if you wish to contact Newsweek to thank them for writing favorably about the neurodiversity movement, letters@newsweek.com is the address for letters to the editor for the US print edition and webeditors@newsweek.com is the address for the online magazine.

Edit, May 16: The Newsweek article has been published online.

Edit, July 28: The mailing address for ASAN as shown above has been updated.

Cassandra's Impact on Autistic Victims of Domestic Violence

2009-05-06T13:32:00.007-04:00

Much of the criticism surrounding the faux Cassandra disorder invented by Maxine Aston, wherein she claims that being in a romantic relationship with an autistic person causes psychological harm to a non-autistic partner, has focused on the efforts of associated hate groups such as FAAAS to stereotype autistics as violent and unfit for family life. This false portrayal reflects a longstanding prejudice, recently addressed by ASAN President Ari Ne'eman, that people with disabilities are "inherently unfit as spouses or parents." To the extent this baseless prejudice is given credence by family law judges and social workers, it endangers the basic human right to marry and raise children. I received an e-mail just this morning, discussing the Cassandra scam and the harm caused by disability stereotypes, from a woman who wrote that "until I was 24 I wouldn't have been allowed to get married in many states in the USA. Why? Because I am epileptic."

Such stereotypes can be especially dangerous to autistic victims of domestic violence. Like other people with disabilities, many autistic people who are victims of abusive relationships are particularly vulnerable and may have great difficulty escaping from a life-threatening situation. If, because of the bigoted stereotype that the autistic partner is always to blame for family problems, an abused autistic's cries for help go unanswered, this could result in her death at the hands of her abuser. The feminist disability rights group F.R.I.D.A. points out that domestic violence against women with disabilities is widespread and that much more action needs to be taken to stop it. (For those of my readers who are in Illinois, there will be a F.R.I.D.A. rally at the State Capitol in Springfield on May 22, 2009, from 1:00 to 5:00 PM, addressing the issue of domestic violence against women with disabilities; please consider attending the rally to show your support if you can do so.)

I have reprinted below, with permission, a statement from an autistic woman who wrote of her struggle to escape a violent marriage and how difficult it was for her to explain the abuse to others. Fortunately, she was able to escape safely and to find people to help her. Others in her situation have not been so lucky.

I am having a very hard time explaining why I stayed so long, etc., because NTs do not seem to understand why a person with my apparent intelligence believed so many lies. I know this is a common thing among battered women, but trying to explain how an abuser would manipulate an intelligent woman's gullibility and social anxiety so well is very hard any time I have to deal with anyone who is not experienced with autistics or battered women in general. He is already using my inability to process information quickly to manipulate the court process by changing potential settlements at the last minute, while we are in court, so that I can't comprehend them in a meaningful way while I am on a time limit to sign. I have a very good attorney (legal aid turned us down so I had to pay for my own which is going to be very problematic financially since having a very good one is crucial and not cheap). We are very lucky to have one CPS finding against him and irrefutable evidence of infidelity (which is more useful than undocumented testimony about physical abuse, since he is of course lying about the extent of the abuse and trying to take advantage of the fact that the children are too young to go to court).

I am astounded by the lack of information on abuse against autistic partners right now and so saddened by the whole "cassandra" myth. My husband used my quirks as excuses for beating and cheating on me although from his perspective, having a wife who was afraid of conflict, absolutely faithful, very easy to lie to, easy to isolate so that no one else would know about the abuse and report it, and unable to conceal anything (including hidden bank accounts that I tried unsuccessfully to use to get out), was a huge plus. I have a friend who is a former attorney and battered women's advocate and is trying to help me communicate with my lawyer right now, which has been very difficult so far, but I am still very scared. Thankfully we have already gotten an agreement for no unsupervised visitation but it will still be very hard to endure the rest of the proceedings which may last a year or more.

The thing that gets me is that I know that as typical as I am of women on the spectrum in so many ways, I am sure there are a lot of people in my position who are suffering in silence. I was lucky that there are two staff members at the shelter with autistic family members who have helped advocate for me when the group living situation has become unbearable, but I don't know how it is in other shelters and suspect many other autistics in similar situations may not be so lucky.

I will have to look for that book next time I am at the library. It was a Gavin De Becker book that finally helped me read the nonverbal signs well enough to recognize the risk and get out quickly the day that I am sure I would have ended up dead or too injured to get the kids out in time. I continue to think the fact that I managed to find homes for the pets, get access to the car (I have never been allowed to have my own), and get the kids out of the house in less than two hours that day was a miracle.

Edit, June 27: Here is a link to a post by chaoticidealism on this topic, Cassandra's Opposite.

Community Choice Act Needs High Priority

2009-05-01T14:08:00.006-04:00

During his campaign last year, President Obama promised the disability community that if elected, he would work for prompt passage of the Community Choice Act. This legislation would reform Medicaid to end the current institutional bias and increase access to community-based services and supports. It would provide those in institutions and nursing homes the option to receive community-based services, allowing them to leave the institutions and to live empowered lives within the community, and would address the problem of extremely long waiting lists by providing guaranteed access to a community-based benefit within the Medicaid system.

Instead of working to accomplish prompt passage of the Community Choice Act, however, the Obama administration has indicated that it wants to address health care reform first. This is unacceptable to disability rights advocacy groups such as ADAPT, which protested in Washington on Monday regarding President Obama's failure to keep his campaign promise to take action quickly on this important issue.

There are many people with disabilities who have been on waiting lists for community-based services for years, and in some cases decades. Some people ended up waiting so long that they died in institutions. This is not just another political issue that can be pushed aside, depending on how the winds blow. It is a matter of basic human rights and needs to be treated as such. Write to the President and your members of Congress to make it clear where you stand. For Change.org members, you can send e-mails quickly and easily by going to this action alert.

Ari Ne'eman, Dora Raymaker Present Self-Advocate Views

2009-04-29T18:08:00.004-04:00

While being interviewed for a Salon.com article, ASAN President Ari Ne'eman and Change.org blogger Dora Raymaker both indicated that more access to services and accommodations in society would greatly benefit the autistic population. Dora Raymaker gave the example of how much easier it is for her to communicate through text chat instead of telephone conversations, explaining that an instant-message conversation allows her to work around her speech disability. Ari Ne'eman explained that cure-oriented research has taken funding away from vitally needed services and that a focus on causation tends to imply that autistic people are less valuable members of society.

As discussed by Sharon on the Family Voyage blog, the article has some flaws, of which the most glaring is a completely groundless assertion that autistic rights advocates in the United States are engaged in court battles to stop treatment programs from receiving government money. No such court cases exist. To the contrary, ASAN and other pro-neurodiversity groups have lobbied vigorously to expand the range of services and therapies made available through government programs and insurance mandates, while also pointing out that the focus of such programs should be on teaching useful skills rather than suppressing harmless differences. Michelle Dawson explains on her blog that the article misrepresented her intervention in a Canadian case several years ago.

The article also would have benefited from a discussion of the social model of disability. Although the author does mention that some families believe "safeguarding a child's dignity and teaching him to navigate a neurotypical world… don't have to be mutually exclusive," the article gives the misleading impression that this is a minority view among autistic culture proponents, when in fact the non-exclusiveness of respect for autistic differences and enabling autistics to interact effectively with others is central to the neurodiversity philosophy.

Overall, though, I am glad to see that self-advocates now are being interviewed for articles about autism much more often than in previous years, rather than being left out of the discussion altogether. The media seem to be moving in the right direction.

Our Community Remembers

2009-04-25T22:42:00.003-04:00

The recent death of Alyric, who was an impassioned blogger and a strong voice for justice, was a great loss to the autistic community. I first encountered Alyric's writings on autistic civil rights and feminism in 2005, when I came across her blog A Touch of Alyricism. (Her family members have kindly allowed the blog to remain online as a resource for the community.) I thought it was a lovely and original name for a blog, and so well matched to the creative and insightful nature of its author.

Over the years, Alyric posted many thoughtful, in-depth essays addressing matters of importance to the autistic community. She wrote about junk science and the marketing of bogus cures, the ABA controversy, and the false and harmful 'autism epidemic' rhetoric. She is generally credited with having been the first to publicly post an exposé of the hate groups that arose from Maxine Aston's promotion of the fictitious Cassandra Disorder. Her writings were always well researched and often included many references. She will be greatly missed.

Here are several links to other memorial blog entries:

In Memory of Alyric
In Memoriam
RIP Alyric
Alyric

Tony Attwood and Isabelle Hénault, the World Is Watching

2009-04-20T08:33:00.010-04:00

Clinical psychologists Tony Attwood and Isabelle Hénault have been very successful in book sales, speaking tours, and other presentations regarding autism. Unfortunately, they also are very closely associated with both Maxine Aston, inventor of the bogus Cassandra disorder, and the infamous Massachusetts hate group FAAAS, which has repeatedly claimed that autistics are violent by nature and abuse their family members. Both Attwood and Hénault are members of FAAAS' professional advisory board and presented at FAAAS conferences for several years beginning in 2000.

Conference photo, a.k.a. Tony Attwood's Hall of Shame

(l-r: Karen Rodman of FAAAS, Hénault, Attwood, Aston)

In March, both Attwood and Hénault gave presentations at a conference in Sydney, Australia, sponsored by a group called ASPIA, which claims to be a support group for people involved in relationships with autistics. Sound familiar? Yup, it's another hate group peddling the same old garbage. I posted a blog entry last month illustrating the hypocrisy, bigotry, and total lack of ethics in such groups and how they destroy relationships. Nonetheless, Attwood and Hénault have continued to appear at these events, no doubt because their association with the Cassandra cult has been very lucrative over the years. The Cassandra groups have provided them with buyers for their books, conference fee money, and increased name recognition. In return, the presence of credentialed psychologists at these events has given the Cassandra cultists an appearance of legitimacy, which has helped them to suck in new converts. Seems like a win-win situation—except for bothersome little details like integrity, decency, and the human rights of autistics and people with disabilities.

The Autistic Self Advocacy Network has posted an online petition calling on Tony Attwood and Isabelle Hénault to renounce their Aston/FAAAS/ASPIA connections and to make a public apology to the autistic community, as well as to the cross-disability community regarding FAAAS' insinuations that all people with neurological disabilities are likely to be abusive. This is not the first time members of our community have raised the issue with Attwood and Hénault. Several concerned people have tried to discuss it with them in private. However, their usual mode of response has been to make nice soothing sounds, wait for the pesky autistics to go away, and then go right back to consorting with Aston and FAAAS. Not surprising, given Tony Attwood's history of minstrel show attitudes toward autistics. Now that it is all out in the open, we'll see if they respond in a more meaningful way.

I have stated before on this blog that minority communities, such as the autistic community, have both the right and the responsibility to police themselves and to ensure that those who seek to exploit their people under the guise of providing services are not allowed to do so. As we have seen with other civil rights movements, minority groups who struggle against intolerance can exert significant economic power by refusing to patronize vendors who knowingly spread intolerance. When professionals claim to have expertise in meeting the needs of the community's members, but are in fact spreading harmful stereotypes for financial gain, the community would be well within its rights to say to them: You're fired. Whether that happens with Attwood and Hénault will depend on their willingness, now that their unsavory associations have become widely known, to change their ways and make a genuine apology for the harm caused by their associations.

More Positive Autism Awareness: No Myths PSA

2009-04-16T20:32:00.006-04:00

The Florida-based Dan Marino Foundation and the Autistic Self Advocacy Network sponsored the No Myths public service announcement (PSA), which was filmed by Kent Creative in the Parthenon in Nashville, Tennessee. Inside this full-scale replica of the ancient Greek temple, myths about autism are laid to rest by an autistic cast consisting of Ari Ne'eman, Dena Gassner, Ben Liske, and Jacob Pratt.

A captioned version of No Myths is available at http://www.overstream.net/view.php?oid=udtvrbt0rlao

More information can be found at http://www.nomyths.org/ about the film and its production. That site states, "The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way." Many thanks to all involved in the making of this excellent PSA, which does a very effective job of dispelling autism myths and stereotypes!

World Autism Awareness Day: "Promoting positive perceptions about autism"

2009-04-02T18:16:00.002-04:00

United Nations Secretary-General Ban Ki-moon gets it. He understands, as shown by his World Autism Awareness Day statement, that the autism issues we really need to be aware of are issues of social perceptions and human rights. The statement is so refreshingly positive that I've reprinted it in its entirety below:

To Enable Children and Persons with Autism to Lead Full and Meaningful Lives is Not a Far-Off Dream

By designating 2 April as World Autism Awareness Day, the United Nations General Assembly has helped to galvanize international efforts to promote greater understanding about autism. This year's observance is being marked with lectures, briefings, screenings, musical performances, video conferences, art installations and other activities carried out by the UN family and a full constellation of partners.

I welcome this growing international chorus of voices calling for action to enable children and persons with autism to lead full and meaningful lives. This is not a far-off dream; it is a reality that can be attained by promoting positive perceptions about autism as well as a greater social understanding of this growing challenge.

I have seen what caring people who work tirelessly for this goal can achieve. Last year, the United Nations hosted a rock concert by Rudely Interrupted, whose members have various disabilities, including on the autism spectrum. They brought the audience to its feet with warm, communicative songs and showed, through the sheer joy of their performance, how much people with disabilities can offer the world.

The words of lead singer Rory Burnside were especially inspiring. "My advice", he said, "to kids who have some form of disability is: don't let it stop you. Use it as your strength; don't use it as your weakness. One red light can lead to a whole bunch of green lights, with a few orange lights thrown in. And the red lights are just a bit of a test. There are definitely more green and orange".

On World Autism Awareness Day, let us capture and share this spirit, and let us intensify global efforts to ensure that children and persons with autism everywhere can benefit from the supportive environment they need to reach their full potential and contribute to society.

Thank you, Mr. Secretary-General, for raising a voice of sanity and decency that is much needed in today's world.

BBDO New York, How About Some Real Respect

2009-03-31T19:06:00.011-04:00

Special Olympics sponsored rallies and other events today to promote its Spread the Word to End the Word campaign, which asks people to respect individuals with cognitive disabilities and to refrain from using the cruel and dehumanizing word "retard."

The advertising agency BBDO New York contributed posters supporting this campaign, in which the R-word is explicitly compared to ethnic and other slurs. (Edit: these posters are pretty strong stuff—thanks to cripchick for suggesting that I add a trigger warning for this link.)

Unfortunately, the agency's history demonstrates that its concern for avoiding offensive descriptions of people with disabilities may be less than genuine. As many of us will recall, BBDO New York was responsible for the Ransom Notes advertisements in December 2007, which compared autistic children and others with disabilities to tragic kidnap victims whose lives were being destroyed. Those ads were so full of offensive disability stereotypes that they were withdrawn in response to public outrage less than three weeks after their release. BBDO New York was also responsible for the Autism Speaks television ads that compared the odds of having an autistic child to dying in a car crash, being hit by lightning, and other such imagery carefully crafted to give the impression that an autistic child was about the same as a dead one.

Although BBDO New York would no doubt like to convince us that it has had a genuine change of heart, I'm more inclined to believe—especially after reading this New York Times article published yesterday—that its Special Olympics ads are merely part of a cynical strategy to "pay attention to the disabled" so as to appear more responsible during the economic downturn. The agency's CEO, Andrew Robertson, has been a board member of Autism Speaks for the past two years. I'm not aware of any efforts he has made to end the routine use of cruel and dehumanizing language by Autism Speaks in describing autistic people. How about ending the hypocrisy too, Mr. Robertson?

Affirmation and Impairment

2009-03-27T08:56:00.001-04:00

Dora Raymaker recently wrote a thoughtful post on the Change.org autism blog contrasting the social model of disability with the medical model and discussing a proposed new model of disability, which is called the affirmation model. She explains that although the social model views disability as arising from barriers in society rather than from medical conditions, it may not go far enough toward affirming that disability need not be a tragedy or a misfortune.

The affirmation model speaks of people with impairments, rather than people with disabilities, and seeks to promote personal acceptance of impairment. Under the affirmation model, Dora writes, "we are fine with who we are as we are: our impairments are an important part of ourselves and our lives."

I certainly agree that all people should feel empowered to accept themselves as they are; however, it seems to me that the word "impairment" is not useful for advancing this goal because of its inherently negative connotations. The dictionary on my bookshelf lacks a separate listing for impairment, but it defines "impaired" as follows:

adj: being in a less than perfect or whole condition: as a: handicapped or functionally defective…

Granted, my dictionary is a few years out of date; it's a 2001 Webster's Collegiate that I haven't gotten around to replacing. However, I expect that this definition, or something quite similar, is still the first thought that comes into most people's minds when someone mentions impairment.

Under the commonly referenced definition put forth by the World Health Organization, impairment is a "loss or abnormality of psychological, physiological, or anatomical structure or function." While this language isn't as bad as Webster's, it still frames the concept in negative terms.

It should also be noted that neither of these definitions—nor any other definition of which I am aware—provides an objective way to determine whether or not particular characteristics are impairments. Instead, that determination is made by reference to whether a characteristic is seen as normal or abnormal, which is always a subjective concept and often changes as society's values shift.

Thus, using the word "impairment" to describe a personal trait implicitly acknowledges as legitimate—and further perpetuates—the practice of classifying certain kinds of human characteristics as abnormal on the basis of society's prevailing prejudices. It is not conducive to critical discussion of whether such a distinction should exist in the first place.

We are never going to reach the point where disability is seen as a normal part of life if we continue to define the underlying personal characteristics as the opposite of normal.

Empathy and Autism/Asperger Research

2009-03-20T16:53:00.006-04:00

As part of the ongoing effort to debunk the damaging myth that autistics lack empathy, I'm posting a citation to a research study that addressed the issue: Rogers K, Dziobek I, Hassenstab J, Wolf OT, Convit A. Who cares? Revisiting empathy in Asperger syndrome. J Autism Dev Disord. 2007 Apr; 37(4):709-15.

This is not a new study, as can be seen from the date of the citation, but I don't recall having read any articles on the neurodiversity blogs discussing it. (If anyone wrote a blog entry that I overlooked, feel free to post a link to it in my comments.) The abstract describes the study's findings as follows:

Abstract A deficit in empathy has consistently been cited as a central characteristic of Asperger syndrome (AS), but previous research on adults has predominantly focused on cognitive empathy, effectively ignoring the role of affective empathy. We administered the Interpersonal Reactivity Index (IRI), a multi-dimensional measure of empathy, and the Strange Stories test to 21 adults with AS and 21 matched controls. Our data show that while the AS group scored lower on the measures of cognitive empathy and theory of mind, they were no different from controls on one affective empathy scale of the IRI (empathic concern), and scored higher than controls on the other (personal distress). Therefore, we propose that the issue of empathy in AS should be revisited.

The authors explain that "cognitive empathy" refers to the process of understanding another person's perspective, while "affective empathy" is an observer's emotional response to the affective state of others.

In other words, the autistic participants in the study displayed less understanding of others' perspectives than the control group; they showed about the same amount of sympathy and compassion toward others; and they experienced higher levels of personal distress when observing others in distressing situations.

As I have mentioned in previous posts on this blog, tests measuring cognitive empathy and theory of mind are both culturally and linguistically dependent. That is to say, in order to understand others' perspectives accurately, it is first necessary to share common cultural points of reference and to have a sufficiently similar understanding of the words used. The more that a minority community diverges from the majority in its culture and its use of language, the lower its members will score on such tests.

I rather suspect that if anyone were to conduct a research study measuring the ability to understand perspectives that are commonly found in the autistic community, the autistic participants in the study would show more understanding than the non-autistic participants.

Lindt Chocolate Nomination Protest

2009-03-09T15:40:00.004-04:00

Recently, Lindt Chocolate made an unwise business decision when it chose to donate 10 cents from the sale of each Gold Bunny (an Easter candy product) to Autism Speaks. Lindt is now the target of a boycott by the autistic community. You can read more about this boycott on several autistic civil rights blogs. To sign a petition asking Lindt to withdraw its support for Autism Speaks, please visit the ASAN petition page on Change.org.

Lindt also is sponsoring a competition called Unsung Heroes of Autism, which "recognizes and honors individuals who are making a difference in the lives of others." I presume that the reference to "others" means that the individuals to be recognized are non-autistics who are busily campaigning to eradicate autism and that, in accordance with the usual pattern of denial shown by Autism Speaks and its supporters, nobody at Lindt contemplated the possibility that any autistics might submit entries. For the benefit of those who would like to expand Lindt's horizons, I've reprinted the contest information below:

Between February 26 and March 11, 2009, you can nominate yourself or someone you know to be one of two UNSUNG HEROES OF AUTISM who will be honored at a celebratory event at the New York Palace Hotel on April 1st to kick off Autism Awareness Month.

$5,000 towards their efforts and initiatives to help the cause.
Personal highlight featured in the June issue of Cookie magazine.
Travel for two, to and from the Lindt UNSUNG HEROES OF AUTISM Event in New York City.
Two night stay at the Palace Hotel for the Lindt UNSUNG HEROES OF AUTISM Event.

To nominate yourself or someone you know, please submit a 250-500 word description of how the nominee embodies an UNSUNG HERO OF AUTISM. A panel of judges representing Lindt & Sprüngli and Cookie magazine will review the submissions based on the following criteria:

Demonstration of a strong and sustained commitment to the autism cause, including a personal sacrifice.
Illustration of a creative and innovative concept that furthers the goals of fighting autism, raising awareness and increasing research initiatives in his or her community.
Impact of individual contributions on the lives of others or on their community who are affected by autism.
Identifiable changes that have been the result of his or her activities.

I'd like to encourage my readers to go to the Unsung Heroes site (lindtunsungheroes.com) and nominate autistic civil rights advocates who have made personal sacrifices in fighting bigotry, who have been involved in creative and innovative protests, whose individual efforts have increased society's respect for neurological diversity, and whose efforts have led to identifiable changes in the behavior of organizations that have been targeted by our protests—including, it is to be hoped, Lindt Chocolate.

Edit: Act quickly—nominations are being accepted only until 11:59 PM ET on Wednesday 3/11/09.

Cassandra Cult Victim Speaks Out

2009-03-01T17:31:00.002-05:00

I wrote a post in September discussing the phony Cassandra disorder invented by Maxine Aston and perpetuated by various hate groups. According to the Cassandra cultists, being in a relationship with an autistic person causes a depressive disorder. It's a convenient excuse for vengeful ex-spouses to blame everything in their lives on their autistic former partner, and quite lucrative for Aston and other unethical counselors who profit from allegedly treating the nonexistent disorder.

Recently, I received an e-mail from a woman who described in detail—from her own firsthand experience—the bigotry and hypocrisy of the Cassandra crowd, and the wreckage they cause to marriages and families. I have edited the letter slightly for clarity and to remove personally identifying details; otherwise, the letter as posted below has not been altered.

My marriage was broken up by a woman who runs an aspergers "partners support group." She convinced my husband I have aspergers syndrome and encouraged him to leave me and move in with her. He is suffering from Cassandra disease, she has told him. I had no idea he was involved with her in any way until he announced to me on the phone from her house that he had decided to end our marriage for a woman he claimed at the time to have just met, and move in with her. But it turns out they had a long term secret involvement.

I have NEVER had a diagnosis of aspergers, and have since been told by professionals that I do not have aspergers at all. Even been asked by professionals, "who on earth put that idea into your head?" But even if I did have, this behaviour is very very wrong. Before his involvement with her everyone, including me, thought we had an ideal perfect marriage. So you see why this turn around all came as such a traumatic shock to me. And why I'm so devastated by this adultery and family devastation. What has happened (and is still ongoing) is atrocious and caused me and our daughter so much pain and devastation.

They have even gone as far as to claim I left him. So many lies have been told about me in top of all the pain and the cruel betrayal. She is extremely manipulative and has an enormous amount of control over my husband. I find this woman's actions with my husband to be highly unethical. She claims he was a member of her partners support group and she was supporting and helping him to get out of his marriage due to aspergers.

We had NO marital issues that he had ever spoken of regarding me, before she convinced him I was "defective" and he would be better off with her being an "NT." She refers to herself and my husband as "NTs" and uses terms like "we" are like this, and "they" (people with aspergers) are like that. And "they don't understand how we normal people think" or "not normal like us."

She divorced her own husband after he had a new diagnosis of aspergers, breaking up a long-term marriage and separating the children from their father. He is now happily married to a woman who appreciates him just as he is and for who he is. From what I have heard he is a good man; however she says he wouldn't agree to the treatment she wanted him to undergo after she gave him an ultimatum. I think she found it shocking to suddenly know he was considered to be "defective" being a person with aspergers.

My heart is still so broken as is our daughter's, as even though this is terrible behaviour of my husband with this woman, I still love him very much as I always have. Our family and marriage are shattered. He told me on the phone when he announced to me about being with her, that she had "counselled him" to divorce me. She claims that she is not advising people to end their marriages... but THIS IS NOT TRUE! Privately she advises people to do such things.

She has gotten a lot of support from being linked to other sites, and people tend to find her and think she is some sort of expert, as she presents that way. She makes some very broad and sweeping unfounded statements and conclusions. I so believe this needs to be exposed for what's going on. This woman even advises partners of people with aspergers not to have children with their spouses, lest they bring "another one" into the world! I see her as not unlike Hitler, but you would never dream it from how she presents. Sounds so sympathetic to the aspergers cause, or "supportive" of aspergers marriages. Please believe me SHE IS NOT! She is a self seeking fraud and a very good actor with her own personal agenda.

Support groups should not be hate groups for NT "victims" who empower each other in abuse of and play cruel mind games with their unsuspecting partners. This woman encourages the "partners" in her group to NOT disclose to the spouses they are attending her hate groups. I know this for a fact, and believe encouraging deception and secrets between marrieds is dangerous to the marriage and detrimental to any real marital intimacy. She runs her group like it's a domestic violence victims group. Very unhealthy. I believe it's rather serious to treat a certain group of people as if they are subhuman or defective, and not even deserving of their own spouses, who loved them enough to marry them in the first place (you would think).

There's much more to this very sad story, than I can put here right now...

Abuse and Behaviorism

2009-02-24T16:47:00.008-05:00

Disability rights groups such as TASH and NDRN have been seeking to bring more attention to the serious problem of restraints, seclusion, and other abuse of students with disabilities in America's schools. Among other approaches to dealing with this problem, they have suggested implementing positive approaches to discipline in schools and school districts. They have cited Positive Behavioral Supports (PBS) as an example of such an approach.

These disability organizations are not advocating the use of PBS as a treatment for autism. Rather, they are suggesting that school-wide and district-wide programs, which are called PBIS (this stands for Positive Behavioral Interventions & Supports) and are intended to apply equally to all students, can improve the overall disciplinary environment and thereby help to prevent abuse and bullying of students with disabilities.

The Autistic Self Advocacy Network has been considering whether, and to what extent, it should support anti-abuse initiatives that promote the use of PBIS programs. Because the behavioral assessment methods used in PBS/PBIS have their roots in ABA, which has a long and sordid history of shoddy research and unethical practices when used as a treatment for autism (as thoroughly documented by Michelle Dawson on her website and blog), some members of the autistic community have questioned whether ASAN should support such initiatives.

The disability organizations that favor the use of PBIS are not relying on the ABA/autism research literature to support their position, however, but on data showing reduced disciplinary incidents among the entire student body in schools and districts that have adopted PBIS programs. Whether or not ABA should be used as a treatment for autism is irrelevant to an analysis of the use of PBIS for general disciplinary purposes. Moreover, many school districts do not even employ psychologists to run these programs, but instead arrange for district personnel to receive training from PBIS consultants. A school district that has a PBIS discipline program is using that program for purposes unrelated to autism and, in most cases, is not employing anyone who has ever used ABA as a treatment for autism.

Of course, in evaluating the effects of PBIS programs on students with disabilities, there are other factors that should be considered in addition to disciplinary incident data. It would be helpful to interview autistic students and their families regarding their experiences with such programs, taking into account a broad variety of quality of life issues. Also, as Ed discussed in a recent post, behavioral programs in the schools should "be critically scrutinized in order to see that their direction is productive and encourages more creativity rather than fewer freedoms."

Poof! The Vaccine Lawsuit

2009-02-12T13:37:00.005-05:00

My graveyard now has a new resident—the vaccine lawsuit, along with the profiteering quacks who spawned it:

For the occasion, I've composed a new version of "Puff, the Magic Dragon" by Peter, Paul & Mary. Enjoy.

[Chorus:]
Poof! The vaccine lawsuit
Lacked all sanity
Deluded schemers dreamed of loot
In the land of fantasy.

Without a shred of science
The rascals spewed out guff
Tied up with strings and sealing wax
And other fancy stuff.

[Chorus]

Together they would travel
In search of easy marks
To conferences and parent groups
Just like so many sharks.

Autism societies
Would bow to their brash claims
Publishers would print their trash
When the editors saw their names.

[Chorus]

Some urban legends live forever
But not so greedy quacks
Whose marketing plan was nothing but
Junk science and nasty attacks.

One fine day it happened
The court knew that they lied
And Poof! The vaccine lawsuit
Shriveled up and died.

With no more easy targets
To cheat and abuse
The quacks no longer could invent
False epidemic news.

Now known for what they were
Their lies could not shock
So all those slimy quacks just
Crawled back under their rock.

[Chorus]

Autistic Monster Ad Yanked

2009-02-09T20:24:00.003-05:00

After two and a half weeks of bluster and increasingly frantic and contradictory excuses for its disgusting "Dan's Story" advertisement depicting an autistic boy as a monster, Action for Children has finally (well, sort of) pulled its head out of its hindquarters and faced up to the reality that an ad campaign defaming autistic people wasn't a plus for its public image. The television ad has been withdrawn in response to the firestorm of protest from the British and international autistic community.

As Mike Stanton observes, however, Action for Children still won't admit the obvious fact that this ignorant ad campaign was a colossal blunder. The charity is now trying to save face by pretending that yesterday was the ad's scheduled ending date, despite previous statements that it would run longer.

By way of comparison, the protest against NYU's Ransom Notes ads in December 2007 was met with similar denials and excuses before the ads were taken down two weeks into their run. But at least NYU issued a statement acknowledging that the ads were being withdrawn in response to the concerns of the community. Action for Children hasn't even bothered with the pretense of caring what our community thinks.

Many thanks to all the bloggers and activists who relentlessly pressed to end this ad campaign, including Socrates, Sharon, Mike Stanton, the Autistic Self Advocacy Network, Dora Raymaker, Bev, and many others. Great work, everyone!

Edit, February 10: A British marketing magazine has published an article on the controversy. Let's hope that ad agencies will learn the right lessons from this debacle and will know better than to create stereotyped and insulting portrayals of autism in the future.

Employers, Think Before You Discriminate

2009-02-06T12:50:00.003-05:00

The United States Court of Appeals for the Third Circuit ruled last week in an Americans with Disabilities Act (ADA) case, Eshelman v. Agere Systems, that an employee was illegally terminated based on her employer's perception that she was substantially limited in the major life activities of working and thinking. The employee did not claim that she was actually disabled within the meaning of the ADA but contended that her termination was based on the employer’s belief that she was disabled or, alternatively, on her record of impairment.

The employee had undergone chemotherapy for breast cancer, which left her with short-term memory loss. She became disoriented at times while driving. After returning to work, she coped successfully with these problems by carrying a notebook, taking frequent notes, and riding with coworkers instead of driving. She received the highest possible performance rating on her appraisals for the two years following her return to work. She was promoted to a higher managerial position and earned raises and bonuses.

During a reduction in force, the facility where she worked was shut down. Supervisors planned to transfer her to another facility, based on her excellent performance history. However, when she mentioned her difficulty with driving and discussed the possibility of telecommuting, her performance rating was changed to one of the lowest scores and she was terminated. She was not given any opportunity to challenge this decision.

At trial, a supervisor testified that the change in the employee's performance rating was based in part on the employer’s perception that she would be unable to travel because of the residual effects of her chemotherapy and that she lacked the ability to perform the job. The jury found the employer liable for disability discrimination under the ADA. The Court of Appeals ruled that the evidence was sufficient to allow the jury to conclude that the employer had terminated the employee based on its perception that she was substantially limited in a major life activity.

The Court of Appeals noted that driving is not classified as a major life activity, which means that employees are not protected under the ADA from discrimination based on lack of driving ability. However, the jury reasonably could have inferred that the employer's concerns extended more generally to a belief that the employee was substantially limited in working and thinking, which are major life activities. Alternatively, the jury reasonably could have concluded that the decision to terminate the employee was based on her past history of having had such impairments. The Court of Appeals specifically stated that because the claim was based on the employer's perception of the employee's abilities, it was irrelevant whether the employee actually was disabled under the ADA.

There hasn't been much case law on the issue of thinking as a basis for a disability discrimination claim. However, because the recent amendments to the ADA have clarified that employees are protected from discrimination based on actual or perceived impairments in thinking, I expect that such lawsuits are likely to be brought more often.

Now, this is what I have to say to those who don't like the way their autistic workers think: Any employer who doesn't see a problem with discrimination on the basis of cognitive differences would be well advised to think twice about that.

Dan the Torpedoes, Full Monster Ahead

2009-02-03T19:05:00.007-05:00

The British charity Action for Children is stubbornly continuing to run its Dan the Autistic Monster advertisements, despite widespread outrage in the autistic community and unequivocal condemnation from autism researchers and professionals including Simon Baron-Cohen, Tony Attwood, and Mitzi Waltz. Evidently, Action for Children has made a calculated decision to ignore the public fury about the ad, hoping that it will all be forgotten shortly. It's up to us to make sure that doesn't happen.

Dora Raymaker has written a post on Change.org with links and information about action alerts to complain to the UK's Advertising Standards Authority and to other authorities (with directions for how to make the action alert work from non-US addresses) regarding the ad. If you haven't already responded to this, please do so. Also, you can find contact information for the charity's major corporate supporters here, and a group on Facebook is protesting the ad. For those who blog, please write some more posts about the controversy and let your readers know how they can show their disgust with this hateful and exploitative ad.

Edit, February 5: Yesterday the ITV network cut from the ad's line "I used to lash out" to someone being punched in the face in an unrelated ad, during a football (soccer) game. You can find a video of it here (thanks to Socrates for the link). As if the ad hadn't already done quite enough to stereotype autistic people as violent monsters...

Action Items for New Jersey Residents

2009-01-30T15:49:00.006-05:00

The New Jersey Adults with Autism Task Force is currently conducting an informational survey to determine how the state can better provide services. The survey includes responses from autistics, parents, and others. Most of the responses received to date have been from parents. Although parent responses can be helpful, it is also important for self-advocates in New Jersey to respond to the survey to ensure that the concerns of autistics are represented sufficiently. Here is the link:

http://www.surveymonkey.com/s.aspx?sm=x33lcx4bxbMZ6Bwm55ApOQ_3d_3d

In addition, New Jersey is considering legislation that would close most of its institutions and provide funding for people with developmental disabilities to live in their communities. The Autistic Self Advocacy Network has issued a statement, reposted below, asking New Jersey residents to write to their state legislators in support of the bill.

Hello,

As many of you recall, earlier this month we worked with NJ Assemblyman Louis Greenwald and NJACP to introduce legislation which, if passed, will close five of New Jersey's seven institutions and shift the funds into community services. This effort has the potential to empower thousands of individuals with developmental disabilities, including many autistic adults, to live in the community. You can see a press conference announcing the legislation here, the bill text here and an endorsement from the New Jersey Star Ledger and the Philadelphia Inquirer here and here. This bill is an extremely important step towards ensuring a future with quality of life for thousands of adults with developmental disabilities living in New Jersey. Currently, the state ranks near to last in the country in regards to community services for adults with disabilities and uses institutions at one of the highest rates of any state. New Jersey ranks 49th out of 50 in terms of the average number of individuals segregated into institutions yet also ranks 40th out of 50 in terms of the amount of money allocated to community services funding. Click here for a comprehensive briefing paper on why A3625 is so important, providing supporting data, facts and analysis explaining why A3625 will lead to a better life for adults with developmental disabilities in New Jersey.

Ten years after the Olmstead v. L.C. decision ruling that people with disabilities have a right to receive services in the community rather than in segregated institutions, we still have a long way to go. No one should have to live in an institution. Today, we as a society possess the ability, the expertise and the sense of justice to end this system of segregation. In order to do that, we need your help. This action alert will use your zip code to send your letter supporting A3625 directly to your state legislators. Unfortunately, only New Jersey zip codes apply. If you live in New Jersey and are unsure as to your zip code, feel free to look it up by going to this link.

Please help support this effort by posting this message to your mailing lists, blogs, websites and other distribution mechanisms. Together we can empower people with disabilities everywhere.

Nothing About Us, Without Us!

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Although much more can—and should—be done to protect the civil rights of people with developmental disabilities and to enable the most disadvantaged to speak on their own behalf, this legislation is a significant step toward community inclusion. I urge New Jersey residents to take the time to respond to this action alert and, in the future, to keep a watchful eye on state legislators to ensure that more progress will be made.

Destroying the Intolerance Monster

2009-01-25T09:37:00.005-05:00

A charity in the UK called Action for Children has created a truly appalling short film called Dan's Story, which is being shown on TV as an advertisement. It depicts a boy as having been eaten by a wicked autism monster and suggests that the monster must be destroyed. Several bloggers already have written about this horrid imagery, including Mike Stanton, Socrates, Bev, Sharon, and Shiva.

Socrates posted contact information on his blog for Gary Day, Head of Supporter Care at Action for Children: gary.day@actionforchildren.org.uk

Unfortunately, it appears that Mr. Day does not understand (or perhaps does not care) how grossly offensive this advertising campaign is to the autistic community. His mass-mailed response to our complaints, which is posted in Socrates' comments, asserts that the ad is acceptable because "Dan tells his own story in his own words," and goes on to say that anyone who does not like it can complain to the UK's advertising standards authority.

The dismissive tone of his message strongly reminds me of the mass response sent out by Dr. Harold Koplewicz of the NYU Child Study Center a few days after the Ransom Notes protest began. Dr. Koplewicz also claimed that he was just trying to raise awareness and help children. Less than two weeks later, after thousands of blog entries and protest e-mails, a joint letter prepared by ASAN and signed by thirteen other disability organizations, and media coverage, Dr. Koplewicz conceded defeat and withdrew the advertisements.

During the campaign against the Ransom Notes ads, contact information was posted for prominent NYU Child Study Center donors, and protest letters were copied to these donors so that they would understand the harm that was being done with their money and would put pressure on NYU to withdraw the ads. The same thing needs to be done here. I am not familiar enough with British job titles to know exactly what a "Head of Supporter Care" might be (and would appreciate it if my British readers would enlighten me in the comments). If supporters are the same as donors, and if Mr. Day's job consists of keeping them happy so that they will give more money, then the next logical step would be to post e-mail addresses for the charity's main supporters and make them as unhappy with the charity's actions as possible (if you have such info, please post it here). A joint letter signed by several UK disability rights groups, similar to what was done with Ransom Notes, would also help, with media coverage if possible.

As for the argument that the ad came from Dan's own words, I recommend reading a post on Ballastexistenz entitled Why Students Praise the Judge Rotenberg Center, which describes in detail how children with disabilities can be conditioned (brainwashed) to think of themselves as unworthy of having any say in their own lives and to make only positive statements about their caretakers, no matter what is done to them.

We can destroy the intolerance monster. The campaign against Ransom Notes shows exactly how to do it. Let's get busy.

Edit, January 26: ASAN has set up an Action Alert on Change.org, which provides a basic template for letters protesting these advertisements and automatically sends them.

An extensive list of contact information for corporate supporters, etc., can be found on Socrates' blog.

Alison Tepper Singer Grows Up

2009-01-23T17:21:00.015-05:00

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.

Merryl Tisch, Distinguished Torturer

2009-01-20T17:39:00.002-05:00

Education Update magazine has made plans to host a second New York Citywide Special Education Conference on Saturday, February 28, 2009. The conference is also sponsored by Hunter College, NYU, and District 75. The agenda includes the presentation of a "Distinguished Leader in Special Education" award to Merryl Tisch, the vice chancellor of the New York State Board of Regents.

In her capacity as the head of the Board of Regents' VESID (Vocational and Special Education for Individuals with Disabilities) Committee, Tisch bears responsibility for the infamous "emergency regulations" adopted by the Board of Regents in June 2006, which authorized aversive behavioral interventions, restraints, and seclusion to be used on students with disabilities. Wrightslaw listed the aversives authorized under these regulations as follows:

* noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes
* noxious, painful or intrusive spray, inhalant or tastes
* withholding sleep, shelter, bedding, bathroom facilities or clothing; withholding meals, limiting essential nutrition or hydration
* movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices
* placing a child unsupervised or unobserved in a room from which the student cannot exit without assistance

"Strangling" was not a typo… and it's no coincidence that "electric skin shock" was the first item listed. These regulations were passed after an investigation of the Judge Rotenberg Center was conducted in April and May of 2006 by the New York State Education Department. After the report describing the investigation's findings proved to be highly critical of the JRC's practices, including its use of shock devices and other aversives on children with disabilities, Merryl Tisch and other supporters of the JRC took "emergency" action to ensure that students from New York could legally continue to be sent there.

Thereafter, in September 2006 and again in October 2006, Tisch along with other Regents voted to extend the regulations. Although a public outcry led to the removal of the most egregious language, such as "strangling," from the regulations, New York still allows the use of unlimited restraint and seclusion as a result of Tisch's efforts. The head of the NYS Assembly Health Committee compared the situation to Abu Ghraib in a letter asking the Regents to do the right thing. His request, along with others from major civil rights and disabilities organizations, was rebuffed.

In short, if Tisch deserves any official recognition for her "distinguished" career in special education, a tribunal investigating her for crimes against humanity would be more appropriate for her "distinguished" accomplishments. Letters, e-mails, and telephone calls protesting this shameful choice for the award should be directed to:

Dr. Pola Rosen
Publisher and Editor in Chief
Education Update
695 Park Avenue
Suite E1509
New York, NY 10065-5024
Tel: 917-375-0497
Fax: 212-772-4769
ednews1@aol.com

Carley Fighting Autism

2009-01-18T09:05:00.005-05:00

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.

Advocacy: the Good, the Bad, and the Ugly

2009-01-16T22:49:00.006-05:00

Here's a brief roundup of a few items I've noticed recently in the news, related to autism and disability advocacy.

The Good: Disability rights organizations are continuing to make themselves heard, through well-orchestrated presentations to Congress and the Obama administration, regarding policy decisions. The National Disability Rights Network presented Congress with a report documenting the abuse of children in the schools by means of restraint and seclusion, and advocating specific policy changes to protect children with disabilities. Also, a coalition of disability rights organizations sent an expansive list of policy recommendations to President-elect Obama. Both of these initiatives were supported by the Autistic Self Advocacy Network.

The Bad: As blogged by Bev on Asperger Square 8, a British newspaper, the Daily Mail, has printed an article advocating eugenic abortion of autistic children because they supposedly wreck their parents' lives. The Mail is an infamous bigoted rag and not to be taken seriously; however, the article got a large number of disgusting comments from people who agreed with it.

The Ugly: The Academy of Motion Picture Arts and Sciences has decided to give its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony in February to — Jerry Lewis. Yes, that Jerry Lewis, the misogynistic, gay-hating, narcissistic slimeball who has been pissing off disability rights activists for the past four decades with his annual Muscular Dystrophy Pityfest. About two thousand people already have signed an online petition protesting that abominable choice.

Making Policy the Right Way

2009-01-07T12:08:00.004-05:00

Although President-elect Barack Obama has not yet taken office, he already has begun to make good on his campaign promises to consider a wide variety of viewpoints and to empower people with disabilities. The Obama transition team's disability coordinator, Kareem Dale, met last Friday with six advocacy organizations, including the Autistic Self Advocacy Network, to discuss autism policy issues. The new administration is seeking to identify high-priority issues within the autism community.

As our new president prepares to take office in these difficult times, with so many urgent matters that require his attention, it is heartening to see that he recognizes the importance of consulting with autistic self-advocates as essential stakeholders in the development of policy on autism-related issues.

Autism Blogging on Change.org

2009-01-05T20:41:00.005-05:00

The social networking site Change.org, which was created to enable people to take effective action for social change as citizens of the world, asks its members on its home page "What do you want to change in the world?" The site contains blogs that address many important issues of modern society.

A blog featuring autism issues was recently added to the site. The Change.org management, aware of the importance of empowering minorities and people with disabilities to speak on their own behalf, interviewed several autistic bloggers for the position and hired Dora Raymaker, who is a board member of the Autistic Self Advocacy Network and a co-director of the Academic Autistic Spectrum Partnership in Research and Education. She is part of a team with prolific parent blogger Kristina Chew.

Change.org deserves some hearty New Year's cheers for recognizing that it would be a good idea to include an autistic blogger's perspective in the public dialogue about autism.

On Becoming a Bitch

2008-12-31T23:06:00.003-05:00

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.

End of Year Action Items

2008-12-29T18:49:00.002-05:00

Here are two opportunities for the autistic community to make its voice heard before the end of the year. Change.org is inviting people to vote on ideas for change, with the top results to be presented to the Obama Administration on Inauguration Day and advanced in Congress thereafter. The competition ends on Wednesday, December 31st. Unfortunately, there are some icky autism proposals that are full of devastation rhetoric. By voting for other ideas, we can make it less likely that one of them will be selected. It is necessary to sign up as a member of Change.org to vote; please consider doing this if you have the time. These three proposals would be helpful to the autistic community and have a reasonable chance of getting into the next round if they can get some more votes:

Fully Fund Medicaid Waivers for the Developmentally Disabled
Replace No Child Left Behind With a Strong Education Policy
Independence and Services for Disabilities and Autism

Also, the Obama Transition Team's outreach efforts include a virtual health care policy discussion to be completed by Wednesday. Details below:

Attendees of the AS Community Health Care Discussion this past Saturday in Staten Island, NY unanimously agreed to extend the opportunity to participate to the virtual domain.

Participation will require about 1 to 1 ½ hours. Participants will be asked to read a five page pdf Participant Guide provided by the Presidential Transition Team. A set of 7 open-ended questions and 3 multiple choice questions need to be answered. In answering the open-ended questions, place an emphasis on health care issues related to AS. Answers to the questions will be used to prepare a report to be reviewed by Senator Tom Daschle and the Presidential Transition Team.

Participants will be encouraged to have a brief telephone conversation with Doug Hanway, the discussion moderator. The purpose of this conversation will be to integrate each individual's ideas and stories with those of the other participants. The role of the moderator is to listen, facilitate discussion, and answer any questions on the process. The moderator is not there to tell the attendees what to do or offer suggestions. The goal of the process is to respect, empower, and include every participant. The Presidential Transition Team has explicitly requested that the discussions are not occasions for "experts" to listen to "everyday people" and then decide what is best. They are an opportunity for attendees to come together to diagnose the health care problems facing their community and propose solutions.

The final submission needs to be sent to the Transition Team by the end of Wednesday, December 31. Therefore, participants need to complete their input and talk to Doug Hanway by noon on the 31st. The Presidential Transition Team has explicitly requested to strive to incorporate everyone's concerns and opinions in the discussion and submission. Each attendee's views matter – whatever their background, beliefs, or previous political involvement. Even when there is disagreement, we strive to find common ground.

To participate, email Doug Hanway at dhanway75@hotmail.com Doug will send you the Participant Guide pdf. From there, study the pdf and answer the questions. You will also be given a few open ended questions on AS and health care which you may choose to answer. Then set up a time to chat with Doug before noon on Wednesday. He will provide you his contact number in the email. If it is not possible for you to participate by phone, an email chat can be arranged.

The Lessons of Autism Awareness

2008-12-18T12:41:00.004-05:00

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.

Mandatory Autism Registry Proposed

2008-12-09T18:09:00.000-05:00

The state of New Jersey is currently considering a proposal to create a mandatory autism registry as part of a "birth defects registry." The public comment period began in mid-November and will continue until January 16, 2009. I've reposted the notice of proposal below:

The Division of Family Health Services in the Public Health Services Branch of the Department of Health and Senior Services proposes new rules and amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.

The proposal would establish an autism registry and a severe neonatal jaundice registry.

This proposal would require health care professionals to report diagnoses of autism in children from birth through twenty-one years of age. N.J.S.A. 26:2-187 requires the Department of Health and Senior Services to implement the reporting of autism and to establish an autism registry. Autism is a developmental disorder of brain function that is typically manifested by impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests.

Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child's parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information.

The proposal would require clinical laboratories to report newborns with severe neonatal jaundice, a condition that is caused by a buildup of bilirubin, an orange-yellow pigment found in bile. Toxic levels of bilirubin can cause severe neurological damage called kernicterus. N.J.S.A. 26:8-40.21 requires the Department to establish a severe neonatal jaundice registry.

The proposal would also make the reporting requirements for congenital conditions more consistent with the Centers for Disease Control and Prevention (CDC) Guidelines, and extend the reporting requirements for congenital conditions from birth through five years of age.

Under the proposal, the information on individuals with these conditions that is reported to these registries would remain confidential. The data contained in these registries would be used for public health research, needs assessments, and public health investigations.

The notice of proposal appears in the November 17, 2008 issue of the New Jersey Register.

The public has until January 16, 2009 to comment on the proposals. Persons wishing to comment on the proposals must submit their comments in writing to Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ 08625. Written comments on the proposals must be postmarked on or before January 16, 2009, which is the close of the 60-day public comment period for the proposals.

You know what to do, people. Let's get those keyboards clacking! Be sure to get your comments written well in advance of the deadline, as they must be submitted through snail mail. The Autistic Self Advocacy Network also will be submitting a comment, and Ari Ne'eman has requested that members of the autistic community send suggestions to him regarding what should be included in that comment. He can be reached at aneeman@autisticadvocacy.org and would appreciate your input.

Researchers Identify Autism Biomarker

2008-12-02T19:05:00.002-05:00

A study presented at a meeting of the Radiological Society of North America indicates that it may be possible to accurately identify autistic children at a very early age by measuring brain wave patterns to determine if a child has a significant lag in auditory processing. As reported in an Associated Press article:

The brain wave study used noninvasive technology called magnetoencephalography, MEG for short. It measures magnetic fields generated by electrical currents in brain nerve cells, and records brain activity in real time.

Researchers at Children's Hospital of Philadelphia had 64 autistic children ages 6 to 15 listen through headphones to a series of rapid beeps while under the helmet-like device, which recorded the brain's response to the sounds. Those brain waves, shown as highlighted areas on an imaging screen, were compared with responses in a group of non-autistic children.

In autistic children, response to each sound was delayed by one-fiftieth of a second.

"We tend to speak at four syllables per second," said Timothy Roberts, the study's lead author and the hospital's vice chairman of research. If an autistic brain "is slow in processing a change in a syllable ... it could easily get to the point of being overloaded."

Although the study did not include younger children, the researchers believe that it may be possible to use the same method of brain wave measurement for diagnostic purposes in very young children.

The reporter suggested that the benefit of using this biomarker for diagnosis would be that "it could mean behavior treatment much sooner." But as I see it, a diagnostic biomarker would be valuable for precisely the opposite reason—because it would take autism out of the subjective realm of behavioral observations and define the condition, for the first time, in terms of hard science. Autistic children would receive more of the services that they need from speech and language professionals, instead of spending large amounts of time in intensive behavioral programs that lack solid research to support their practices.

Although reasonable people can differ on the issue of whether some autistic children may be helped by behavioral therapies, it is a fact that behavioral practitioners are not trained or licensed to provide speech therapy or related services. If autism is to be defined in terms of auditory processing differences, then I believe the logical conclusion is that services for autistic children should be provided primarily by, or under the direction of, speech and language professionals.

Rejecting Eugenics

2008-11-25T13:51:00.000-05:00

After prenatal screening for Down's syndrome and other genetic conditions became a routine practice, abortion statistics in some countries showed termination rates as high as 90% or more after a positive test result. Many people assumed that such children would be doomed to endure a life of tragic suffering and that abortion was therefore a compassionate choice.

Advocates sought to change this perception by showing the positive aspects of their families' lives and working for full social and educational inclusion. They believed that, as with other minority groups, integration would lead to greater understanding and acceptance.

A recent study in the UK, conducted by the Down's Syndrome Association, indicates that this approach has been effective in changing public views:

The number of babies in England and Wales being born with Down's syndrome has risen to a higher level than in 1989 when serum pre-natal screening was widely introduced - with two births a day according to the latest figures.

And in an attempt to understand why more women are opting to go ahead with their pregnancies the Down's Syndrome Association has consulted parent members. The results, released in a Radio 4 documentary, "Born with Down's Syndrome," show that many believe the quality of life for people with Down's syndrome will be better than in the past and that those with Down's syndrome are more accepted in society.

Following the introduction of screening for Down's syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade.

Since 2000 the birth rate has increased, reaching 749 births of children with Down's syndrome by 2006, the latest year for which figures are available.

The study suggests that when differences and disabilities are simply seen as part of everyday life, people are less likely to have negative expectations or to make decisions based on fear. Some of the parents mentioned that they knew a person with Down's syndrome or another disability and that this had influenced their views.

I expect a similar improvement in public attitudes toward autism as we achieve greater integration in schools and workplaces. There's more discussion of this study at the Left Brain/Right Brain blog.

Sausages and Legislation

2008-11-19T13:56:00.001-05:00

…and the diagnostic categories in the Diagnostic and Statistical Manual of Mental Disorders (DSM) all have one thing in common: You will be seriously disgusted if you look too closely at how any of them are made.

In a Los Angeles Times article, Christopher Lane, a Northwestern University professor, describes an ongoing controversy among psychiatrists as to whether the next revision of the DSM should be open for public discussion or whether it should be a secretive, closed-door process. Lane writes:

Hanging in the balance is whether, four years from now, a set of questionable behaviors with names such as "Apathy Disorder," "Parental Alienation Syndrome," "Premenstrual Dysphoric Disorder," "Compulsive Buying Disorder," "Internet Addiction" and "Relational Disorder" will be considered full-fledged psychiatric illnesses.

This may sound like an arcane, insignificant spat about nomenclature. But the manual is in fact terribly important, and the debates taking place have far-reaching consequences...

...Because large numbers of countries, including the United States, treat the DSM as gospel, it's no exaggeration to say that minor changes and additions have powerful ripple effects on mental health diagnoses around the world.

Behind the dispute about transparency is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders.

Lane writes that he is concerned about the lack of solid science, the lack of proper oversight, and the need for a vigorous debate about the validity of any proposed disorders. He describes, in scary detail, the chaotic and scientifically unsupported discussion that went into the creation of new diagnostic labels in previous editions.

This is how I see it: At present, we live in a society where large numbers of our citizens, without any say in the matter, have been assigned mental disorder classifications on the basis of scientifically questionable and often biased research studies. We face widespread prejudice and discrimination as a result of these arbitrary classifications and the resulting stereotypes. Our psychiatric emperors and their drug-company courtiers wield vast power over our lives, while their scientific nakedness usually goes unmentioned. It's time for concerned citizens to put an end to the ugly and morally indefensible caste system that they have created in secret.