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Age of Autism pull offensive blog post

4 Dec

Recently, the Age of Autism blog put out a piece of “satire” where they showed a badly photoshopped image of the people they like to demonize sitting down to a thanksgiving dinner, with a baby as the main course.

It was disgusting. I said so then.

Orac at Respectful Insolence blogged it, as did Kim at Countering Age of Autism and Turner and Kowalski.

Follow the link, and you get nothing now.

http://www.ageofautism.com/2009/11/pass-the-maalox-an-aoa-thanksgiving-nightmare.html.

Thank you for pulling the piece. An apology, to the autism community and to the individuals you maligned would be in order. A public one. AoA, take the link above, and replace the post with an apology.

I am not holding my breath.

Ari Ne’eman of ASAN testifies to the US Equal Employment Opportunity Commission

3 Dec

Ari Ne’eman, of ASAN (the Autistic Self Advocacy Network), recently testified on ADAAA Proposed Regulations before the US Equal Employment Opportunity Commission. The transcript is below.

Testimony given to the US Equal Employment Opportunity Commission and Department of Justice Civil Rights Division, Town Hall Listening Session on the ADAAA Proposed Regulations, Philadelphia, PA, 10/30/09; Stuart Ishimaru, Acting Chairman of the Equal Employment Opportunity Commission, presiding.

MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.

ARI NE’EMAN: Thank you very much and thank you for the chance.

I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.

For too long, prior to the passage of the ADA Amendments Act, the approach of addressing discrimination and of viewing the difficulties that those on the autism spectrum face through the context of discrimination rather than merely through the context of impairment or charity was one that was all too often not taken in the autism world. With the passage of the ADA Amendments Act, and the promulgation of regulations implemented with a unique view to building a culture of civil rights that coincides with the growing rights on the autism spectrum, those who desire to speak for themselves and take an active role in how we are viewed in society are trying to address the ways in which the society still poses obstacles.

We’re very pleased by the regulations proposed in order to implement the ADA Amendments Act. And we have three broad suggestions in terms of how to improve them for adults and youth on the autism spectrum seeking to find and maintain, and avoid discrimination in the context of, employment.

First, we note that autism was included amongst the list of examples of impairments that will consistently meet the definition of disabilities. We would like to suggest that this be somewhat clarified to broaden the term to autism spectrum disability, rather than just simply autism, seeing as the term autism is commonly understood to refer to five diagnoses in the DSM-IV: Autistic disorder, Asperger syndrome, and others on the autism spectrum. Now, these different diagnoses have somewhat different characteristics, but they all substantially limit communicating, interacting with others and learning. As a matter of fact, in the DSM-V, the next edition, it has been proposed that these diagnoses be combined into a single autism spectrum disorder or autism spectrum disability diagnosis reflecting the fact that for more individuals, the particular autism spectrum disability diagnosis they receive is largely dependent upon what professional they visited or what region of the country they should happen to live in. We believe that clarifying the language to reflect autism spectrum disability will ensure that all autism diagnoses are covered.

Second, we also believe that in respect to the “regarded as” from the symptoms of impairment leading to adverse actions by employers, when this is brought up, that some consideration for the needs of people with invisible disabilities must be addressed in respect to the facts for people with invisible disabilities. One of the greatest difficulties is that our symptoms of impairment are extent to a lesser extent in the general population. We propose that a phrase be added in the section under actions taken based on symptoms of an impairment or based on use of mitigating measures, clarifying that an action taken on the basis of behavioral symptoms also present in the general population also constitutes an action covered under the “regarded as” prong. For example, an individual who is dismissed from a data entry job because he or she does not make eye contact with their supervisor, even if the employer is unaware of the autism spectrum disorder or disability, should still be covered under the “regarded as” prong of this definition.

Third, we also encourage that in respect to section 1630.10, discussing qualification testing and qualification tests, that particular focus be given in the example of a specific example of the ways in which personality tests are administered by many employers. As a matter of fact, a 2003 survey by Management Recruiters International found that 30% of American companies use personality tests, which often act to serve as an obstacle to the full access and the equal consideration in employment and hiring decisions for people with social communication disabilities. As such, we propose the inclusion of an example, to make this section more actionable for those of us with invisible disabilities and for those of us with communication disabilities and focusing on whether or not employees are asked questions as a condition of hiring or relating to social relationships or anxiety in social or other contexts. We feel that this will have an effect on employment discrimination in hiring and promotion for people with invisible disabilities.

Overall, we were extremely pleased by the quality of these regulations. And our community is looking forward to working with the Equal Employment Opportunity Commission and working with the broader civil rights community to help build a culture of civil rights and a culture of ADA enforcement in the autism spectrum disability community and beyond.

Thank you very much for your time and I would be glad to answer any questions.

MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.

MR. ISHIMARU: I actually have one. On the personality tests, do you have a feel of how often they’re used and for people with autism spectrum disability issues, are they … will they always root out people who have the disability or does it happen more often than not?

ARI NE’EMAN: Well, this is something that’s a growing concern in the human resources context. And one of the issues is that the use of personality testing is growing significantly, with 30% of American companies utilizing them in one form or another. There’s a tremendous amount of diversity in terms of what personality tests are being utilized, the level of science that might back them and there’s actually been in the disability context and we know in the context of social communication disabilities, in large part, because of the very issues that led to the passage of the ADA … very little consideration as to the extent to which these personality tests are focusing on job-related tasks that would be covered by a matter of business necessity. We believe the anecdotal experience of many of our members and those of us on the autism spectrum show that these tests do tend to screen out adults on the autism spectrum. Particularly, because they’re being applied in contexts that do not necessarily have those particular skill sets within the essential functions of that job. It’s one thing if these tests are being applied in the context of sales force determination. It’s another thing to be applied in an engineering context or in a data entry job or in another type of job. So we know that these are relatively widespread and we do know that they tend to, because they are generally focused on the nature of the employee’s social interaction, the nature of the employee’s private life, the nature of the prospective employee, to screen out many individuals on the autism spectrum and with other social communication disabilities or with other invisible disabilities.

MR. ISHIMARU: Very good. Thank you very much. Very helpful.

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?

Age of Autism to Autism Families: Make your children suffer

24 Nov

Your pretty red house is engulfed in a roaring fire. You keep feeding the fire. Maybe petrol will help. Pour it on. Maybe some oil. Pour that on too. You don’t know. Nobody knows. Some guy you met on the internet tells you he’s a fireman and that the best way to stop a fire is to try and smother it with bone dry hay.

Your burns are bad. Your kids burns are worse. Do you throw them out of a window where a few other ‘firemen’ are holding on to a sheet made of melting plastic? Or do you push them down the stairs, where the rest of the injured and dead families are?

Thats my response to the utterly asinine response Kim Stagliano posted on the Age of Autism blog today to the Chicago Tribune’s series of articles on the quacks and hacks infesting the autism community. She wheels out the same old strawmen…

That’s my response to the Chicago Tribune accusing us of performing “uncontrolled studies” on our kids. (Our medical doctors are thorough and safe, by the way.)

I know of at least two doctors associated with the biomed movement who are on sex offenders registers. I know of one DAN! doc who is associated with the death of a child. I know of one other who hospitlaised a child. I know another who performed exorcism on autistic kids. I know another who is under investigation for more than one complaint.

And why does it bother journalists like Trine Tsouderos and Pat Callahan that some of us are improving our children’s lives?

I can’t speak for these journalists but I’ll speak as the parent (and step-parent) of two autistic kids. You’re not improving your childs autism. Thats the claim that these journalists are challenging. I challenge Kim Stagliano or Mark Blaxill to show the autism community where a biomed treatment discussed by the Tribune led to a measurable and scientifically documented improvement in their child’s autism. In fact, I can’t think of a child belonging to the founders of Autism FAIR Media, Generation Rescue, Age of Autism, SAFE MINDS or the NAA that has either been cured of their autism or made any sort of progress towards that end result as a sole consequence of biomed treatments. Why? Because in terms of curing/recovering/treating autism *they do nothing* . As a direct consequence of that obvious fact, parents continuing with detox, urine injections, exorcism et al are – as the Tribune indicate – experimenting on their children.

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.

Thoughtful House acknowledges that chelation can be dangerous and not effective

14 Nov

IV Chelation could cause death, and Thoughtful House acknowledges it:

From a recent story in the Austin Statesman:

Thoughtful House’s IV chelation consent form, which Juli Martinez provided to the American-Statesman, includes a long list of possible side effects that include intestinal disorders, joint pain and, in rare cases, “allergy, anaphylaxis, arrhythmia and even death.” It adds that the treatment offers no guarantee of success.

Wow, Thoughtful House admits that IV chelation, even as performed by them, could cause death.

I have read so many apologists for the doctor who killed Tariq Nadama with chelation. They typically read, “the doctor made a mistake” or “the doctor used the wrong drug” followed by statements that chelation is perfectly safe. And, yet, Thoughtful House seems to be saying that even the correct drug could result in death.

And there is no guarantee of success.

Parents in lawsuit over Thoughtful House treatement

14 Nov

Father takes ex-wife to court over son’s autism treatment is the title of a recent story on Statesman.com. The subtitle: Mother says intravenous treatment at Thoughtful House is unproven and too dangerous..

Yes, it’s about chelation. The kid has been undergoing chelation (suppository), but the father wants to do IV chelation. From the Statesman:

Mario Martinez wants his wife’s consent to let their 7-year-old son, William, undergo intravenous chelation — the use of chemicals to remove metals, such as lead and mercury, from the body. Martinez, 39, said he thinks his son is making steady progress at the Thoughtful House Center for Children in Austin by undergoing a less invasive form of chelation and wants the boy to start IV chelation.

The parents are divorced, with the father having primary care of the child. However, Thoughtful House requires both parents to consent to IV chelation.

The mother states that the suppository chelation has been ongoing for two years (yes, years) without progress, but with adverse side effects:

Juli Martinez said in an interview that her son has been receiving chelation in suppository form for two years, which she claims has made him ill. She said chelation hasn’t helped his autism but being in a regular classroom has.

The father has taken the mother to court to get the approval for the IV chelation.

Chelation is the process of removing metals from the body through drugs. Alternative medical practitioners (such as Thoughftul House) use chelation on the assumption that “heavy metal toxicity” is a factor in autism.

It isn’t. This is based on an incredibly bad hyptohesis (Autism is a “novel” form of mercury poisoning), and idea that actual medical toxicologists reject.

Chelation therapy for real heavy metal toxicity is not a prolonged process. Two years is very long. Chelation by suppository is a relatively inexpensive therapy. By contrast, IV chelation at thoughtful house involves $400 every two weeks in testing:

While there may not be scientific proof that chelation helps autism, anecdotal evidence exists, Mario Martinez said. He is willing to spend an extra $400 every two weeks on tests to make sure the twice-monthly IVs are safe, he said.

The father says that the IV chelation is great:

Mario Martinez, who has had primary custody of the couple’s two children since their 2007 divorce, disputes that chelation has made William ill and said that the boy had an IV chelation test that showed he easily tolerated it. He said it brought “immediate, dramatic results,” in which his learning and behavior improved.

I wonder what an “IV Chelation test” is? Did they do a round of IV chelation, without the mother’s consent? What about their rules that the mother has to approve?

Frankly, the mother should be the one taking the father to court.

The court proceeding has been put off until Dr. Jepson of Thoughful House can appear or give a deposition.

The mother is representing herself. Frankly, a medical toxicologist should step in to offer her some support to end this travesty.

Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

11 Nov

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

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