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.

Thank You, President Obama

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!!!

Eradicate Autism Speaks

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

Protesters Attacked by Flying Burrito Wrap

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!

Taking to the Streets

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

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.

Money Speaks

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

From the Autism Science Foundation blog:


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

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


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

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

A Brief History of Cassandra

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.

Tony Attwood FAAAS Poetry Slam

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.

Turning Trolls into Stone

… 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

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.

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

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.

Tony Attwood and Isabelle Hénault, the World Is Watching

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

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!

Abuse and Behaviorism

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."

Action Items for New Jersey Residents

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.

Advocacy: the Good, the Bad, and the Ugly

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

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.

Reminder: IACC Comments Due

Today is the last day to submit comments to the Services Subcommittee of the Inter-Agency Autism Coordinating Committee on issues relating to services for the autistic population. The official notice can be found at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html, and comments should be sent to iaccservices@mail.nih.gov.

The fact that the committee is requesting comments on services is a direct consequence of all the pressure it has gotten from neurodiversity activists. When it was first established in 2006, the IACC was basically Curebie Central, focused entirely on cure and prevention research. It is now showing much more willingness to pay attention to the needs and concerns of autistic people. We need to take advantage of this opportunity and get as many comments submitted as we reasonably can.

The Autistic Self Advocacy Network has prepared a list of talking points to help with putting together last-minute comments on service-related issues. Responses should be limited to one page and should contain NOT-MH-08-016 in the subject line.

Judge Rotenberg Center Abroad

Although there are many who would describe Dr. Matthew Israel of the Judge Rotenberg Center as a profoundly evil man, it's clear that he does not lack business and political savvy. Despite ever-increasing public condemnation of his use of electric shock on children with disabilities, he has repeatedly evaded both legislative and administrative efforts to shut down JRC over the past several years.

The handwriting is on the wall, though. The coalition of civil rights groups lobbying against JRC's abuses is growing stronger, and every time the Massachusetts Legislature votes on a bill to ban behavioral aversives (that is, the deliberate infliction of pain for behavior-management purposes), the vote gets narrower. One day soon, the legislation will surely pass, and that will be the end of the Shock Doc's lucrative marketing of sadistic child abuse for profit—at least in Massachusetts.

He can't simply pack up and move JRC to another state that has not yet banned aversives, either. Disability rights and anti-abuse groups such as APRAIS are active in all parts of the United States, and given JRC's horrific reputation, any attempt to apply for licensure in another state would surely meet with so much opposition that it would be a political impossibility.

So what options are there for America's most infamous behaviorist? Well, the obvious answer is that he will seek to move JRC abroad, to a country where its reputation has not preceded it. And there are indications that this is exactly what may be happening.

In mid-July, the Shock Doc gave a lecture about JRC to a group of Israeli behaviorists who invited him to speak at the Zisman College. Although this was purportedly an unplanned event that took place during a private visit, I have my suspicions that it was intended as a "trial balloon" to determine how well the relocation of JRC to Israel would be received.

The self-advocate organization Autistic Community of Israel (ACI) promptly took action by sending letters and information about JRC to those involved with the lecture. ACI succeeded in getting an advertisement removed from a website, but several behaviorists failed to respond to ACI's letters. As a consequence, ACI informed Michael Ben-Zvi, the secretary of the behaviorists' association that arranged for the lecture, that he was no longer welcome to speak at a symposium presented by ACI.

This incident demonstrates the need for the international autistic community to work together in solidarity to combat abusive behaviorist programs and other threats. We need to make it clear that there will be no safe havens anywhere on the planet for those who profit from the mistreatment of autistic children and adults.

Ari Ne'eman, president of the Autistic Self Advocacy Network (ASAN), is currently in Israel and met with representatives of ACI on Friday to discuss this situation and to offer assistance. ACI has indicated that correspondence from ASAN to Israeli organizations would help to focus attention on the global nature of the autistic community's concerns.

Since its expansion into Australia earlier this year, ASAN has had a consistent track record of being aware and involved in matters of concern to the worldwide autistic community. It's good to see this level of international understanding and commitment.