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Autism Sunday, UK Style

22 Feb

One of the best things about being British is that whenever there’s something that needs attending or observing you can be assured that Cliff Richard will be there intently attending and observing. [insert personal diety here] save us all, if that other great UK institution (the rain) chances along then Sir Cliff may even threaten to sing at said event!

Alongside His Royal Cliffness on the 14th were lots and lots of politicians at All Saints Church in Woodford Wells – not quite Premier League politicos (Gordon Brown and David Cameron sent best wishes) – but even so, those whose portfolios fell vaguely within the remit of suggesting they had to care about people.

My gently mocking tone might give rise to the idea that I’m anti autism Sunday which isn’t true. I think anything which raises awareness _of the right sort_ is a good thing. I’m not sure if Ivan and Charika Corea who founded Autism Sunday and are parents of an autistic child had any idea beyond stating ‘this is Autism Sunday’ when creating the concept but this year they commendably asked the UK Gvmt to remember that amongst the many many victims in Haiti were autistic victims and that the prosaicly named ‘the Autism Clinic’ (a name which gives rise to the uncomfortable suspicon its the sole one) needs a LOT of help to get itself up and running again. Ivan said:

I am also urging the Government to help re-build the Autism Clinic in Haiti. The clinic was completely demolished by the earthquake. I have contacted the Prime Minister, Foreign Secretary David Miliband and International Development Secretary Douglas Alexander to spend a fraction of the promised £18 million aid package to Haiti to re-build the clinic. My heart sank when I saw the television news of the disabled dying of starvation on the road and there was no one coming to their aid. I kept thinking what if it was my son who was on that road? I appeal to HM Government not to walk by on the other side and help re-build the Autism Clinic in Haiti.

Quite. The terrible images coming out of Haiti and the idiotic media ramblings portraying Haiti as a lawless zone sliding into violence should serve to remind us that autistic people exist everywhere and that our duty as an international autism community don’t end at our own borders. Please urge your politicians, wherever you live, to promise aid for the Autism Clinic directly.

ASAN Update on Restraint & Seclusion Legislation National Call-In Day

15 Jan

I just received the following email from Meg Evans of the Autistic Self Advocacy Network (ASAN). ASAN is working on legislation to reduce seclusion and restraints within the schools. This alert calls for action next Thursday to call your representative (should you be a U.S. citizen) to support upcoming bills.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. To increase support in Congress for the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860), ASAN and APRAIS are asking disability rights advocates and others who favor the legislation to call members of Congress on Thursday, January 21st, and ask them to co-sponsor the bill. You can also help by reposting and distributing the announcement below.

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network
mmevans@woh.rr.com

Here is the letter:

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT). This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress — please distribute this announcement widely.

WHAT YOU CAN DO:

Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

To find out the names of your US Senators and Representative, click here (link to www.congress.org)
Ask for the offices of your US Senators and Representative
Ask to speak to the person working on education issues
Identify yourself as a constituent and the organization that you represent (if any)

Message: ” I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment. Please call on January 21, 2010 and tell your friends and family to join you. If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition

Less evolved creatures

29 Dec

Back in of this year, Wired did a piece called ‘An Epidemic of Fear‘ that exposed some of the anti-vaccine charlatans masquerading as purveyors of science that have infested the autism community in the last 10 years or so.

Amy Wallace’s excellent piece (”An Epidemic of Fear,” issue 17.11) isn’t really even about vaccines. It’s about what Thomas Friedman calls the American “dumb as we wanna be” attitude, which combines stunning intellectual laziness, the erroneous concept that all information is equal, and the Internet to create a witches’ brew that we’re using to commit national suicide.

Sadly not just a national malaise, but an international one, Wallace’s piece provoked outraged indignation from those primarily responsible for stirring the Witches brew. The same people that time and again commit the sin of pride as they tell you that they – a handful of business moguls, big titted starlets and antivax lawyers – know as much about the science of vaccination as well, actual scientists who study vaccination and its side effects. Who can forget Jenny McCarthy’s ego-exhortation: her son *is* her science, a course she passed at Google University.

Wired go on to say:

…We got more mail about our cover story, “An Epidemic of Fear,” than any other piece we’ve published. Dozens of medical professionals commended Amy Wallace’s feature on the fallacies promulgated by the anti-vaccine movement. Meanwhile the anti-vaxers flooded our mailboxes with stories of children injured by vaccinations, chain letters, misogynistic rants, threats, and just plain crazytown (”Sodomite editors should go get AIDS at the Folsom Street Fair,” advised one less-evolved creature).

Less evolved creatues permeate the rank, file and leadership of the autism/antivax community. From the creatures that are proud of the baby eating pieces on Age of Autism to the creatures like Dr Sherri Tenpenny who think its OK for kids to die of the flu:

Study these numbers. We’ve had SARS, Bird flu and Swine flu. On average, approx. 190 children/year die from the flu. Considering there are about 62M kids under the 14 years of age in the US, this is NOT “statistically signficant” and should not even make the radar screen.

In 2010, the less evolved creatures should be given less and less weight. Let them carry on making their noises to themselves and we – the autism community – can carry on talking about things that matter.

So, what is autism, culturally?

20 Dec

To some autism is a disability. To some autism is a difference. To most, including me, I’m betting its both. Its not always bad, its not always good. It leaves some people virtually unable to communicate in an NT world and it increases other peoples intellectual ability to the point of near genius.

Some see it as a gift, and others as a curse. Some, including me, see it as neither but as simply something that is. Like the colour brown, or the shape of a circle it exists above others perceptions and therefore is amoral as oppose to moral or immoral.

Some see it as something that needs research into its origins. Others see it as something that needs research into how it can be stopped. Some, including me, see it as something that needs research into how best we support autistic people as they become – and continue to be – adults. How we help them with housing, employment, education etc.

Some people would be shocked that others don’t see research into a cure as the number one priority – or even as a priority at all – and others would be shocked that others don’t seem able to see autism as anything but a state that medically affects children.

As we enter the last year of the first decade of the new millenium, the question needs to be asked: where do we go from here?

Autreat 2010 Call for Proposals

2 Dec

Autreat is a retreat-style conference run by Autism Network International (www.ani.ac), for autistic people and our families,friends, supporters, and interested professionals. We are accepting presentation proposals for Autreat 2010, to be held Monday-Friday, June 28-July 2, 2010, in Bradford, Pennsylvania (approximately 80 miles from the nearest major airport at Buffalo, New York).

FOR HELP PREPARING A PROPOSAL:

If you want to submit a proposal but you have trouble reading these instructions and putting your proposal in the requested format, contactcfp-help (at) autreat.com for help. Please send only plain text messages, with no attachments.

WHAT KINDS OF WORKSHOPS ARE WANTED AT AUTREAT?

Autreat is very different from typical autism conferences:

WHEN PREPARING A PROPOSAL FOR CONSIDERATION, BE AWARE THAT THE *PRIMARY* AUDIENCE AT AUTREAT IS AUTISTIC PEOPLE.

Parents and professionals do attend, and most who attend find the presentations to be of interest, but Autreat is basically autistic space.

Be sure your information is being presented in a manner that is both helpful to and respectful of autistic people.

We expect that you will be speaking *to* us, not speaking to non-autistic people *about* us.

We are interested in presentations, by either autistic or non-autistic people, about POSITIVE WAYS OF LIVING WITH AUTISM, about functioning as autistic people in a neurotypical world, and about the disability movement and its significance for autistic people.

We are interested in educational and informative presentations, not in sales pitches for a presenter?s products or services. If you are representing a commercial enterprise and would like a forum to sell products or services at Autreat, please contact exhibitors (at) autreat.com for information about attending Autreat as a vendor.

We are *not* interested in presentations about how to cure, prevent, or overcome autism.

We do *not* appreciate having non-autistic people come into our space to talk to each other about how difficult we are to deal with, or how heroic they are for putting up with us.

If your presentation is geared toward the interests of parents or professionals, it should focus on positive ways of appreciating and supporting autistic people, not on reinforcing negative attitudes about autism and autistic people.

AUTREAT AIMS TO BE WELCOMING AND RELEVANT TO THE BROADEST POSSIBLE CROSS-SECTION OF THE AUTISTIC POPULATION.

Autreat is attended by autistic people who speak and by autistic people who do not speak;

by autistic people who communicate fluently and by autistic people who have limited communication;

by autistic people who live independently and by autistic people who need intensive support with daily living;

by autistic people who have jobs and by autistic people who live on disability benefits;

by autistic people who are able to present as “socially acceptable” and by autistic people who require support to help them manage their behavior;

by autistic people who have been labeled “high-functioning” and by autistic people who have been labeled “low-functioning”?including some autistic people who have had *both* labels, at different times or under different circumstances.

While it is not expected that any one presentation will be of interest to each and every autistic person, we do look for presentations that will appeal to the widest possible audience.

We are *not* interested in presentations that reinforce what we consider to be artificial distinctions between members of our community who are labeled “low-” vs.”high-functioning.”

A NOTE ABOUT “PERSONAL EXPERIENCE” PRESENTATIONS:

Be aware that everyone at Autreat either knows what it’s like to be autistic, or knows what it’s like to care about someone who is autistic.

All of us have our own personal stories. Presentations about the presenters’ personal stories are not going to generate much interest, unless you’re able to use your story in a way that will help other people to share and understand their own experiences in a new way.

Your proposal should describe what participants can expect to get out of your presentation, not just what personal experiences you’re going to talk about.

TO LEARN MORE ABOUT PRESENTATION TOPICS OF INTEREST

Please review the ANI web site (www.ani.ac) and the past Autreat brochures (http://www.ani.ac/past-workshops.htm), to get an idea of ANI’s philosophy and what Autreat is about. This will help you create the kind of presentation most likely to interest Autreat participants.

If you have never attended Autreat before, you may wish to consider attending first, before submitting a proposal to give a presentation. In our experience, presentations usually get more positive feedback when presenters have some familiarity with Autreat and its participants, before they give presentations there. Active participation in ANI?s online community, and attendance at other self-advocacy events run by and for autistic people, are other good ways to get a feel for how Autreat is different from typical autism conferences. If you wish to submit a proposal and you?ve never been to Autreat before, please give us as much information as possible about your past experience with other autistic-run activities and events.

WHAT IS EXPECTED OF PRESENTERS?

If you submit a proposal, we expect you to be available to attend Autreat if we accept your proposal, and to give your presentation on the day and time scheduled. We make every effort to accommodate presenters’ preferences in setting the Autreat schedule, but it is not always possible to give every presenter his or her preferred time slot.

Presenters are expected to send advance copies of any handouts or slides they plan to use, so that we can prepare alternate format copies for print-impaired attendees.

Presenters are expected to consent for their presentations to be recorded, and for the recordings to be sold by Autism Network International.

Presenters are invited to attend all of Autreat. If presenters opt not to attend the entire event, they are expected to arrive on-site by 8:30 a.m. for afternoon presentations, and to arrive the night before for morning presentations.

Please be prepared to meet these expectations if you decide to submit a proposal.

Presenters are also encouraged to submit an article on their topic for inclusion in the program book. Like handouts and visual aids, articles need to be submitted in a timely manner, so we can prepare copies in alternate formats.

WHAT’S IN IT FOR THE PRESENTERS?

Individual Autreat presenters receive free registration for Autreat,including on-site meals and lodging in a shared (2-person) room. (A private room may be available at the presenter?s own expense.) This free registration is for the presenter *only*, not for a presenter?s family members or support staff.

In the case of panel presentations consisting of three or more presenters, we offer one complete four-day Autreat registration, plus a single-day registration (including three meals and one overnight, if desired) for each additional panelist. Therefore, a panel of X presenters is entitled to a total of 4+(X-1) free days/overnights. Panelists may divide these free days amongst their members as they wish. Panel presenters are of course welcome to register and stay for additional days if they wish.

ANI is a volunteer-run, member-supported grassroots organization with minimal funding. We cannot reimburse for off-site expenses, nor can we pay travel expenses or honoraria. If your proposal is accepted, we will send you a formal letter of invitation if this would help you in raising your own travel funds.

Presenters are entitled to receive one free copy of the recording of their presentations.

PROPOSALS SHOULD INCLUDE:

* Your name and title (if any) exactly as you want them listed in program materials should your proposal be accepted

* Contact information (address, phone, fax and/or email if you have them)

* Title of your proposed presentation

* Detailed description for consideration by the Planning Committee

* Brief (5 sentences or less) abstract exactly as you want it listed in program materials should your proposal be accepted

* Indicate ONE theme that BEST relates to your proposed presentation:

[ ] Advocacy skills
[ ] Life skills/adaptive strategies
[ ] Helpful support services
[ ] Communication
[ ] Social/interpersonal issues
[ ] Personal/self-awareness/self-development issues
[ ] Autistic community and culture
[ ] Education
[ ] Employment
[ ] Family issues
[ ] Residential issues
[ ] Disability rights and politics
[ ] Autism research and theory
[ ] Other (describe):

* Indicate which group(s) you believe would find your proposed presentation of interest. Check as many as apply. Briefly describe what your presentation would offer to each group:

[ ] Autistic adults
[ ] Autistic teenagers
[ ] Family members of autistic people
[ ] Educators
[ ] Clinicians
[ ] Service providers
[ ] Other (specify):

* Brief (5 sentences or less) presenter bio exactly as you want it listed in program materials should your proposal be accepted

* Any audiovisual equipment you would need for your presentation

* If you have never presented at Autreat before, please also include an introduction for the Planning Committee summarizing your relevant experience, including any presentations or other education/advocacy activities elsewhere, and the nature of your interest in autism and/or in general disability issues.

PROPOSAL DEADLINE:

January 20, 2010

HOW TO SUBMIT A PROPOSAL

Proposals can be submitted via email to proposals (at) autreat.com, or submitted online at http://www.ani.ac/aut10cfp.php , or sent via postal mail to

Autism Network International
P.O. Box 35448
Syracuse NY 13235
USA

When your proposal is received, you will be sent a brief acknowledgment confirming that we have received your proposal. If you have not received this confirmation within 48 hours of submitting your proposal, then we may not have received your proposal! If you haven?t received confirmation within 48 hours, please contact proposals (at) autreat.com and let us know. Please save a copy of your proposal, so you can resend it if necessary.

WHAT IF I DON’T WANT TO PRESENT, BUT I HAVE AN IDEA FOR A PRESENTATION I’D LIKE TO SEE?

If you want to make suggestions for Autreat presentations, or make comments about previous presentations or presenters, please fill out the questionnaire available at http://www.ani.ac/autplan2.php.

WHAT IF I WANT MORE INFORMATION ABOUT AUTREAT?

You can find a lot of general information, including a link to join the Autreat Information mailing list, at http://www.autreat.com. If you have specific questions and can’t find the answers on the web page, you may send email to info (at) autreat.com.

A quicker guide to the ‘Green Vaccines’ Initiative

30 Nov

Some music to accompany this entry.

Over at AoA, Kent Heckenlively must be making the rest of the crew nervoous. Maybe you haven’t read his brand new idea for making the ‘green our vaccines’ initiative a political…um…’force’. To whit:

We’re not going to get anywhere with our current legal system because everything gets funneled into Vaccine Court. We’re not going to get far with the current media because they’re so heavily funded by pharmaceutical drug ads. We’re not going to get far with the medical community because they’re part of the machinery.

And don’t even get me started on the politicians. On one hand you have pharma handing out millions of dollars to politicians, and on the other you have parents of children with autism who are slowly bankrupted by this disease. Who do you think is going to have more money to ‘support’ the politician of their choice?

So Kent wants to tackle the legal system, the media, the medical community and politicians. And how?

In the months leading up to this announcement I’ve spent a lot of time thinking about the necessary ingredients for a successful rebellion. Reading books on our own American Revolution has given me some guidance…

Cool. Nifty idea Kent. Tackle the legal system, the medical system, the political system and the media by reading a few books on the American Revolution. I think this is definitely a winner.

I’ve carefully scanned the article a few times (whilst wiping the tears of laughter away) but yep – that seems to be about it. And really, if we (god save us) look at this seriously for a moment what is it? Its a tacit admission that Kent doesn;t like the fact that these systems he wants to change don’t agree with him and his loon friends that vaccines cause autism. In fact, take a look at the comments and you’ll see its moved beyond autism to outright anti-vaxx. Is Kent proposing the very first anti-vaxx based political party? Some choice comments:

…thank you for the opportunity your statement gave us to refine the expression of our opposition to any form of vaccination.

I will never vaccinate again…

I no longer think any vaccine is safe…

There are no green vaccines. I am convinced.

I am in the camp that you can’t make vaccine safe ever

Finished listening to Pink Floyd yet? Good isn’t it?

Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

Bye bye Aspergers?

4 Nov

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

Temple thinks that the AS community is too large and too vocal to simply disappear but I think she’s missing the point somewhat. The point is (in my opinion) neatly encapsulated by Ari. He points out that AS isn’t disappearing, its simply formally becoming ‘part’ of autism. Something the vast majority of the autism and autistic community have always known it is. To answer Temple directly, the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism community.

NB: this post first erroneously stated Temple Grandin had an AS diagnosis. This is now corrected.

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

Federal judge stops IHSS cuts in California

20 Oct

California is facing severe budget shortfalls. High on the chopping block for cost-cutting are services to the disabled.

One form of support is IHSS (In Home Supportive Services).

The IHSS Program will help pay for services provided to you so that you can remain safely in your own home. To be eligible, you must be over 65 years of age, or disabled, or blind. Disabled children are also eligible for IHSS. IHSS is considered an alternative to out-of-home care, such as nursing homes or board and care facilities.

Here is an update from CDCAN, the California Disability Community Action Network.

OAKLAND, CALIF (CDCAN) [Updated 10/19/09 12:10 PM (Pacific Time)- Federal District Court Judge Claudia Wilken in Oakland blocked the state from implementing cuts to eligibility and services under the In-Home Supportive Services (IHSS) program,
granting a preliminary injunction requested by attorneys representing persons who receive In-Home Supportive Services, saying from the bench that substantial harm, damage and injury which would result if the cuts went forward.

The judge’s order represented a sweeping major victory for advocates for persons with Disabilities, mental health needs, the blind, low income seniors, their families, IHSS Workers and advocacy groups.

The judge’s order blocks the State from implementing major cuts to eligibility based on a person’s “functional index score” and reductions in domestic and related services based on a person’s “functional index rankings”.

Judge Wilken said that the State’s use of the “functional index rankings” and “functional index scores” were clearly not based on need, that essential services could be withdrawn arbitrarily, and that “people could lose something irreplaceable – the ability to remain safely in their homes.”

The judge issued her injunction that stopped the cuts from going forward as scheduled Because she believed that the plaintiffs – the persons with disabilities and others who filed the lawsuit were likely to win in a the trial that the cuts to services under IHSS using the “functional index score” and “functional index rankings” as the basis to make cuts to eligibility and domestic and related services violated federal law. The judge denied a request (motion) from the State to “stay” (delay effect date of her injunction) until her ruling can be appealed (“staying” her injunction would have allowed the cuts to go forward until the case could be heard in the US 9th Circuit Court of Appeals)

The judge issued her ruling from the bench from a two hour hearing this morning.

More details later today.

In other words–the cuts to IHSS are on hold during the state’s appeal. The alternative, make the cuts while the state appeals, would have surely meant that some people would have lost their ability to stay “in home”.

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