Whose Planet Is It Anyway?

Monday, May 31, 2010


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.

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Tuesday, May 04, 2010

Autistic Involvement in Research

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


Monday, April 26, 2010

Displacing a bit of aggression

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.


Monday, April 05, 2010

Supporting Local Autism Societies

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.


Friday, April 02, 2010

Battle Fatigue

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.

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Sunday, March 28, 2010

Senate Needs to Confirm Ne'eman

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.

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Thursday, March 25, 2010

Campaign for Disability Employment

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!

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Thursday, March 18, 2010

Melting Down an Autism Stereotype

Three Mile Island
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.


Wednesday, March 10, 2010

Robison Squeaks

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.


Wednesday, March 03, 2010

Judge Rotenberg Center Investigated

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.

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