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Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, 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.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

An open letter to Jenny McCarthy

9 Mar

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just _too_ kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for _years_ – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

…

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is _afraid_ of autism recovery Ms McCarthy but I’ll tell you what some of us _are_ afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: _who_ says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like _all_ medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given _about_ the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

…the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

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.

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