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Disability Coalition Applauds Introduction of Legislation that Protects Students with Disabilities from Abuse

10 Dec

Below is a press release from the Justice for All Action Network and the Autistic Self Advocacy Network. While the topic of seclusion and restraint is painful to write about, it is a pleasure to highlight disability advocacy like this.

This is also discussed on the Education Week blog.

Seclusion and restraint legislation one of 12 items on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.

“There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints,” said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. “The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints.”

While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.

“We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school,” said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.

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. “The fact that our children are still subject to abuse is a disgrace,” said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. “The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions.”

Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point 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 Ari Ne-eman, Autistic Self Advocacy Network, (202) 596-1056;
Andy Imparato, American Association of People with Disabilities, (202) 521-4301

Age of Autism Abandon Pretence

9 Dec

To many of us who have been following the online ‘careers’ of the various people and factions behind Age of ‘Autism’ for many years (at least 7 in my case) this will be no surprise but it still needs pointing out once more:

The Age of ‘Autism’ blog is a repository of and a flag waver for anti-vaccine quackery.

Easy to say and growing easier and easier to demonstrate every day. As of the time of publishing of this post, the latest *six* posts from Age of ‘Autism’ have absolutely nothing to do with autism. These posts are (in reverse order):

1) Counting Offit’s Millions: More on How Merck’s Rotateq Vaccine Made Paul Offit Wealthy
2) Is One Man to Blame for the WorldWide H1N1 Panic?
3) $300K to Banyan Communications from Advisory Commission on Childhood Vaccines?
4) Harvard and CNN Report on Lower than Expected H1N1 Vaccine Uptake
5) Oops. Flu Pandemic May Be The Mildest since Modern Medicine Began Tracking.
6) Kickin’ the Tires of the Green Vaccine Initiative

*All* the above have no relationship to autism. *All* the above have a direct relationship to anti-vaccine beliefs.

One or two stories every now and then that don’t touch on your blog’s core subject is routine and only to be expected – but six in a row? Thats only routine if your core subject is drifting. Or if your *real* core subject is slowly being revealed.

Is Generation Rescue trying to get Airborne to fund junk science?

8 Dec

The latest Generation Rescue newsletter leads me to believe that Airborne may be considering funding Generation Rescue. Here is the latest Generation Rescue newsletter:

Generation Rescue is in the final stages of receiving grant funding for a vaccine research study on the long term effects of the current U.S. recommended schedule. The last thing we need are declarations of support from our community who purchased Airborne Health.

1.) Did you purchase Airborne during May 1, 2001 – November 29, 2007?
2.) Do you support a vaccine research study on the long term effects of the current U.S. schedule?
3.) Do you support a study on vaccinated vs. unvaccinated children?

If you answer yes to all three of these questions, then you are a supporter and can help Generation Rescue provide ground breaking research.

The first 40 respondents will receive a free bag of revitaPOPS for completing a declaration of support.

Airborne is a supplement company that produces a product that claimed to be able to help people fight the common cold. They were involved in a class action lawsuit, resulting in an agreed payment of $23 million to consumers who purchased the product and who could prove they purchased it.

Steve Novella at Science Based Medicine discussed this.

My speculation: there is a big pot of the $23M left over, and Generation Rescue is trying to get Airborne to donate it to fund a vaccinated/unvaccinated study.

Of all the groups to manage such a study, Generation Rescue is way (WAY) down on the bottom of the list.

Generation Rescue has a history of misrepresenting and misusing science to forward their agenda. A few cases: their “phone survey” and their pseudo study on vaccination, childhood mortality and autism around the world.

The deadline to submit claims was December 5, 2009 (4 days ago). It strikes this observer as likely that only a small percentage of Airborne’s customers saved their receipts and were able to be compensated, leaving a large amount of money unclaimed.

I really wonder if Airborne knows what sort of group they are working with in Generation Rescue. Soon Airborne will receive testimonials from people who claim to have purchased their products, who want a Vaccinated/Unvaccinated study done by Generation Rescue.

The very fact that Generation Rescue is paying people to submit testimonials should raise red flags at Airborne.

In my opinion, if, for whatever reason, Airborne wants such a study done, they should find a group other than Generation Rescue to manage it. Funding Generation Rescue in this effort is just throwing money away. Airborne would do much better to fund something that could make a real impact in the lives of autistics.

Edit to add

1) Note that Airborne made no admission of fault in this settlement.

2) Here is a section from the settlement document, noting that money left over could be donated to a non-profit group

If the aggregate value of Valid Claims by Settlement Class Members is less than the amount of the Net Settlement Fund, the balance of the Net Settlement Fund, after payment of all Valid Claims of Settlement Class Members, shall be distributed cy pres to non-profit organizations. Class Counsel shall nominate the non-profit organization(s) that will be recipients of any cy pres funds, which shall then be subject to the consent of Defendants (which Defendants shall not unreasonably withhold) and approval by the Court. For purposes of this paragraph, Defendants agree
that in order to validly withhold consent, Defendants must demonstrate that including a non-profit organization as a recipient would substantially
undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or
politically motivated. Plaintiff agrees that the Center for Science in the Public Interest will not be a recipient of cy pres funds.

It appears to this reader that the class action lawyers (Center for Science in the Public Interest ) get to nominate the possible non-proffits, and that Airborne has the right to reject. In order to reject a non-profit, Airborne would have to claim that the donation “would substantially undermine Defendants’ legitimate business interest or is otherwise improper, and that Defendants’ refusal to consent is not philosophically or politically motivated”

I wonder if class counsel has to prove that the nominations are not philosophically or politically motivated?

IACC full meeting this Friday

7 Dec

The announcement is below:

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Friday, December 11, 2009 from 9:00 AM – 1:00 PM ET. The meeting will be conducted via telephone conference call and webinar only.

The purpose of the IACC meeting is to continue discussing recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research.

The meeting will be conducted and available to the public via a telephone conference call phone number and a webinar conducted using a web presentation tool on the Internet. Registration is not required. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

To access the conference call:

USA/Canada Phone Number: 888-455-2920
Access code: 9984461

To view the webinar:

https://www2.gotomeeting.com/register/906979171

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the web presentation tool or conference call, please-mail IACCTechSupport@acclaroresearch.com.

The latest information about the meeting can be found at: http://www.iacc.hhs.gov/events/2009/full-committee-mtg-announcement-December11.shtml

AMA newsletter:Many autism therapies seen as unproven, risky.

7 Dec

The lead article in today’s AMA (American Medical Association) Newsletter refers to the recent articles in the LA Times,

Many autism therapies seen as unproven, risky.

In a series exploring autism and its treatments, the Los Angeles Times (12/7, Tsouderos, Callahan) reports that “after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.” According to results of the investigation, “the therapies often go beyond harmless New Age folly,” with many being “unproven and risky, based on flawed, preliminary or misconstrued scientific research.” Moreover, “lab tests used to justify therapies are often misleading and misinterpreted,” and “the few clinical trials conducted to evaluate the treatments objectively” have yielded “disappointing results.”

The Los Angeles Times (12/7, Tsouderos, Callahan) reports that “up to three-quarters of families with children who have autism try at least some alternative therapies.” While some physicians and people in the autism “recovery movement…say their treatment protocols rest on a foundation of solid science,” the Tribune discovered “otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony.”

Chelation seen as emblematic of alternative therapies for autism. The Los Angeles Times (12/7, Tsouderos, Callahan) reports, “No treatment is more emblematic of the world of alternative therapies for autism than chelation.” But, according to “pediatric toxicology experts…all chelation” medications “carry risks — even when used to treat severely lead-poisoned children.” Barbara Strupp, PhD, of Cornell University, said that when “rats with no lead exposure were treated with succimer, a common chelator given to children with autism, the animals showed lasting impairments of cognitive function and emotional regulation.” In fact, after Strupp “learned that the National Institutes of Health planned to conduct a clinical trial of chelation in children with autism, she alerted the researchers to her findings,” and the “study was later canceled.”

Alternative therapies seen as getting undeserved credit. The Los Angeles Times (12/7, Tsouderos, Callahan) reports that stories of “children who could suddenly speak” are, “for many parents…more persuasive than what experts say.” Nevertheless, “in evaluating a therapy, the challenge is determining how much, if any, of the progress can be credited to the treatment,” because, “over time, children with autism do develop, said” pediatric neurologist and autism expert Max Wiznitzer, MD.” In fact, “between 10% and 20% of children with autism who were diagnosed early may make so much progress that they are indistinguishable from peers,” and whether or not they are “undergoing alternative therapies,” said Susan Levy, MD, of the Children’s Hospital of Philadelphia, progress which parents may attribute to alternative therapies.

Los Angeles Times picks up Tribune stories on autism alternative medicine

7 Dec

The recent series of stories on alternative medical approaches to treating autism caused quite a stir in the online autism community. Somehow, the groups that responded negatively appear to have failed in preventing other outlets from picking these stories up.


Chelation based on faulty premise
The risky treatment for autism that removes metals from patients’ bodies is often prompted by results from an uncertain test.

This article discusses chelation and how it is often justified using “challenge” testing. Challenge testing is not accepted by actual toxicologists. The story quotes an expert in environmental toxicology on

“That is exactly the wrong way to do it,” said Dr. Carl R. Baum, director of the Center for Children’s Environmental Toxicology at Yale-New Haven Children’s Hospital.

Also, they note that the American Collenge of Medical Toxicology has issued a statement that challenge testing is not valid:

Alarmed by the rise in the use of this test to justify chelation, the American College of Medical Toxicology this summer criticized its use as “fraught with many misunderstandings, pitfalls and risks.”

The story also notes that there is ecidence, both animal research and anecdotal, indicating that chelation therapy is not always safe. They refer to one of the Autism Omnibus Proceeding test cases, that of young Colten Snyder:

Colten Snyder, another child whose case was evaluated in vaccine court, underwent chelation after tests on his blood and hair over six years came back normal for mercury, court records state.

Given that the boy was immunized with vaccines containing thimerosal, “his hair mercury was exceptionally low,” said his physician, Dr. J. Jeff Bradstreet of Florida. “That’s pathological.”

Colten went “berserk” after being given a chelator, according to a nurse whose notes were cited in court records. He also had incontinence, night sweats, headaches and back pain. Bradstreet testified that the boy did not do well with chelation but later said it is “impossible to know” what caused the problems.

In her decision, special master Denise Vowell criticized Bradstreet: “The more disturbing question is why chelation was performed at all, in view of the normal levels of mercury found in the hair, blood and urine, its apparent lack of efficacy in treating Colten’s symptoms and the adverse side effects it apparently caused.”

They note the recent study indicating where rats without real heavy metal poisoning were given a chelator. The chelation therapy resulted in a reduction in intelligence to the rats. The implication is clear: challenge testing may be used to justify chelating non-poisoned children. There is a serious question of whether this is resulting in harm.

When rats with no lead exposure were treated with succimer, a common chelator given to children with autism, the animals showed lasting impairments of cognitive function and emotional regulation, said the study’s lead researcher, Barbara Strupp at Cornell University.

She said that finding raises concerns about administering chelators to children with autism unless they clearly have elevated levels of heavy metals. “I was just astounded and concerned for these kids,” she said.

After she learned that the National Institutes of Health planned to conduct a clinical trial of chelation in children with autism, she alerted the researchers to her findings. The study was later canceled.

“Really,” Baum said, “[parents] are putting their children at serious risk.”

Other stories echoing the recent Tribune stories:

Autism therapies can get undeserved credit

Autism: Kids put at risk


Four autism treatments that worry physicians


On shaky ground with alternative treatments to autism
Doctors and others who support experimental therapies such as hyperbaric chambers cite validity of the science. But the misuse of studies, lack of clinical trials and safety issues tell another story.

In a bit of irony, Google ads keeps linking chelationists, HBOT clinics and other alt-med groups to these stories.

Giving up on DAN. A personal story.

5 Dec

The recent discussions on the series in the Chicago Tribune have been therapeutic for me.

My 16 year-old child is severely effected by autism. Xe is self-injurious, destructive and aggressive. Xyr language has never developed past that of a 2 year-old. Outside of the behaviors that come from OCDs, xe is a happy child and a loved child.

Jeff Bradstreet was xyr doctor when we lived in Florida. When I first met Jeff he was on disability and selling vitamins from a small back office in his wife’s dental clinic. He was not yet one of the DAN! leading acts. Secretin was yet to come to the forefront and make the DAN! docs rich.

Jeff Bradstreet was a very nice man and generous with his time. He and I disagreed often with his approach to my child’s treatment. I still trusted the neurologists and the immunologists more than the DAN! docs. When all went the direction of chelation, I took my child away from DAN!, and I never looked back.

I believed my child was injured by xyr vaccinations when xe was 12 months old. I never thought there was a “measles infection in xyr gut” condition nor a mercury toxicity situation. I just thought xe had an autoimmine reaction. I reported xyr vaccines to the FDA in 1996, and I filed a lawsuit as an individual in 199#. Jeff Bradstreet asked me why he was not asked to submit any evidence in xyr lawsuit. I did not want his name on my child’s case.

I appreciate the time and energy you take to expose what should be obvious.

I worked very hard for what I thought would benefit my child. I travelled all over the US with xyr to see doctors and have medical tests done. I brought in experts to evaluate xyr. I hired attorneys for xyr IEPs. I quit my job and focused on xyr and xyr health and education. Part of that was research that led me to walk away from DAN! and all that it offers. I chose not to chelate xyr. I chose no IVIG treatments.

My child is still severely autistic.

So I am offended at comments about parents leading their children down a path to institutionalization. I am offended that parents believe they rescued their children from a life of head-banging and middle of the night laughter. Because as parents and grandparents of autistic children, they should be more sensitive to children who are autistic and display these behaviors. Do not all autistic children deserve to be valued? Are they telling me that my child is less because xe was not “saved”?

“Real children’s lives are consumed” was the battle cry this weekend from Mark Blaxill. What hypocracy. DAN! doctors are experimenting on autistic children everyday.

I don’t post to your website because I don’t write well. But, here is a final comment.

In 1995 my child at age 2 started at a pre-school for autistic children. After a few months, xe was transferred to another classroom because xe was not making the progress of the other children. Those boys were succeeding at picture exchange, following one-step commands, showing skill in expressive language.

The DAN! protocol wasn’t around in 1995. How did those boys make that progress?

Here in the US there is a British writer for The Atlantic – Andrew Sullivan – who has made it his quest to expose Sarah Palin for the absurd fraud that she is. Right now, that is how I feel about Kim Stagliano.

Many years ago I was on the front lines of the anti-vaxers. I would go to DAN! conferences and hang out with Mark Blaxill, Jane El-Dahr, Holly Bortfeld et-al. I called the vaccination program “government mandated child abuse”. Okay, I was excited at the time. But Kevin, I do think the assembly line approach to immunizing children has gotten out of hand. When I lived in Florida, the pediatrician and I agreed after serious consideration that my now 13 year-old child could go without immunizations. He signed all waivers. That was a medical decision between me and a physician. Why does it have to be so regulated and administered by school districts and health departments? (Note this was also 2 years before the hysteria of Wakefield’s paper).

I did believe then, and at times I still believe that my child had a reaction to xyr vaccinations when xe was 12 months old. I have a report dated 1998 from Michael Chez MD stating he is impressed with xyr reaction to the MMR because it could have cause an autoimmune reaction and breakdown of the blood brain barrier. I have always been interested in more research into the autoimmune reaction of vaccination – like that being done by Dr Bonnie Dunbar in Houston. But her work was overshadowed by the discovery of thimerosal in vaccines.

I never believed my child had measles in xyr gut. I never thought xe had mercury in xyr brain.

I met a lot up parents up to 1999 that said their child regressed post MMR. In 1999, I saw a lot of their stories change to meet symptoms of mercury toxicity from Hep B. I saw a lot of parents that did not believe there was a vaccine injury become convinced that there was a vaccine injury.

I heard a lot of parents swear that it was child abuse to give your kids gluten. I read the science that showed the opioid excess theory is total and complete BS.

I’ve had enough of all things DAN!

The Chicago Tribune writes a responsible piece saying that there is no scientific evidence that IVIG works on neuroinflammation. Instead of providing scientific evidence that IVIG works on neuroinflammation the DAN! zealots attack in every direction they can.

Michael Specter gives vaccine rejectionism a deserved whack upside the head.

5 Dec

So says Autism News Beat. Check out his post, and check out the video below.

OK, he isn’t any real expert. He’s not a doctor or scientist. He’s an author. But it is interesting to listen to what he has to say. From my perspective, it is interesting that vaccine rejectionism is the main example of denialism.

<td style='padding:2px 1px 0px 5px;' colspan='2'Michael Specter
The Daily Show With Jon Stewart Mon – Thurs 11p / 10c
www.thedailyshow.com
http://media.mtvnservices.com/mgid:cms:item:comedycentral.com:257694
Daily Show
Full Episodes		 Political Humor Health Care Crisis

The pseudoscientific glycine-glutathione homeostasis model of autism

4 Dec

You may be wondering why I am blogging this again so soon. Well, one comment showed me that the subject had already been covered, much better than I did.

If you have questions about the glycine/glutathione imbalance hypothesis from the recent press release, check out these two posts:

Hey! Pseudoscientists! Leave them kids alone!

and

A new nonsense afoot

With gratitude to Emily for taking the “science” of this idea on.

Is there a way to stop the junk science?

4 Dec

A recent press release caught my eye. Not for being good, far from it. It is yet another junk science approach to autism.

Perhaps you read it. The title was “Scientific Link to Autism Identified”. In it, a self labeled “think tank” called The Center for Modeling Optimal Outcomes, announced that “homeostasis” was the cause of autism.

The “full” press release is on their website. To the non scientist, especially on a quick read, it sounds convincing. But, in reality, it appears to be written by someone with a high-school biology education.

It has some excellent hooks to convince the casual reader. They present themselves as very successful in a separate field, and claim they stumbled upon a very important idea: that substances within the body exist in pairs. When these pairs are imbalanced, homeostasis is broken, resulting in chronic disease.

Autism, according the “The Center” is caused by an imbalance, or lack of homeostasis, in glycine and glutamate.

How does this cause the condition we know as autism? Unexplained. Somehow, glycine and glutamate “control the rate of cellular absorption”. Absorption of what? Unexplained. How does this cause autism? Unexplained.

But, it all sounds nice and official.

How do glycine and glutamate get away from “homeostasis”? Vaccines. I know, you are stunned that vaccines are implicated in causing autism. The “think tank” looked at the work of Andrew Wakefield and came away with the idea that MMR causes autism. What’s in an MMR shot? Hydrolized gelatin, which, in turn, contains glycine.

Of course, this is an important finding and controversial:

“Undoubtedly, this finding based on the application of the model for homeostasis will cause immense controversy. Our Life Sciences group is prepared to meet with members of the scientific community to explain the model as well as the variables that create the ‘perfect storm’ that results in autism.”

The controversy statement is a good one to make this appear real to many readers.

Perhaps the “think tank” could have done a bit more research into the autism alternative medical community. What are two of the most common supplements recommended by DAN!? TMG and DMG–trimethyl and dimethyl….glycine. Pure glycine is a supplement, sometimes recommended in the autism alt-med world (also here). But, somehow, we are supposed to believe that a small amount in an MMR shot causes the lifelong condition we call autism?

While it appears easy for some to sit back and point out that this press release, this homeostasis model of glycine and glutathione, is junk science, we must also recognize that it is not easy for everyone. The press release is wrapped in just enough jargon to make a convincing argument for many readers.

As Autism News Beat points out,

Health care fraud is a $100 billion a year racket in the US, and the bad guys know about autism.

Is the “The Center for Modeling Optimal Outcomes” part of the “bad guys” or are they just helping them? They don’t seem to be trying to profit from their junk science.

In the end, I don’t really care. I just wish they would take their junk science and apply it elsewhere.

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