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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.

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.

Is DMSA safe and effective?

1 Dec

This is the question posed by Prometheus over at A Photon in the Darkness blog. He blogged this in response to two papers recently published:

Safety and Efficacy of Oral DMSA Therapy for Children with Autism Spectrum Disorders: Part A – Medical Results

Safety and Efficacy of Oral DMSA Therapy for Children with Autism Spectrum Disorders: Part B – Behavioral Results

The short answer is, yes, DMSA is safe and effective. That is, if you have lead poisoning. It is likely safe and effective for other heavy metal exposures as well.

As far as a treatment for autism, well, that is another story entirely. The study authors claim that oral DMSA is “…possibly helpful in reducing some of the symptoms of autism in those children”.

Take a look at Prometheus’ analysis of the study. It is very clear that the study authors used, well, curious methodology. Beyond that, their conclusions are not really supported by their own data.

John’s Hopkins FAQs: The meaning of neuroinflammatory findings in autism

30 Nov

In their recent series on autism the Chicago Tribune exposed how a Johns Hopkins team’s findings of neuroinflammation have been misused to justify unproven autism treatments.

The Tribune included very short piece, Researchers warn against misusing report. The piece includes a link with some very valuable information, but it is unfortunately somewhat obscure. The web address they list (chicagotribune.com/autismstudy) is unlinked, and actually links through to the Hopkins team’s FAQ.

That FAQ is definitely worth reading and referring to when you read or hear “neuroinflammation”.

The FAQ is rather thorough, and I am in danger of just copying the entire thing here. Since I haven’t asked for permission, I’ll quote a small fraction of the FAQ. Yes, I am aware of the irony there–cherry picking information from this team is exactly what has led to the problems the Tribune reported upon. So I’ll say it again: go and read the FAQ for yourself.

Here is part of question 2:

Is neuroinflammation always present in the brain of autistic patients?

NOT necessarily. Since autism is a disorder that is highly variable in the ways it presents, and may be associated with multiple causes, it is possible that our sample of cases does not represent the entire autistic spectrum.

Here’s part of question

Are microglial and astroglial reactions always bad for the brain?

NO. The microglia and astroglia in the CNS may have a two-sided role in the inflammatory responses of the brain: they can act both as direct effectors of injury and on the other hand as protectors of the brain.

I’ll include all of question 12:

If there is neuroinflammation in the brain of some autistic patients, is treatment with anti-inflammatory or immunomodulatory medications indicated?

At present, THERE IS NO indication for using anti-inflammatory medications in patients with autism. Immunomodulatory or anti-inflammatory medications such as steroids (e.g. prednisone or methylprednisolone), immunosupressants (e.g. Azathioprine, methotrexate, cyclophosphamide) or modulators of immune reactions (e.g. intravenous immunoglobulins, IVIG) WOULD NOT HAVE a significant effect on neuroglial activation because these drugs work mostly on adaptive immunity by reducing the production of immunoglobulins, decreasing the production of T cells and limiting the infiltration of inflammatory cells into areas of tissue injury. Our study demonstrated NO EVIDENCE at all for these types of immune reactions. There are ongoing experimental studies to examine the effect of drugs that limit the activation of microglia and astrocytes, but their use in humans must await further evidence of their efficacy and safety

Capitals are in the original.

The Hopkins team is the source when it comes to neuroinflammation in autism. If they chose to write this FAQ and emphasize some points in all capitals, it’s well worth taking them seriously.

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.

Autism treatment: Science hijacked to support alternative therapies

23 Nov

Such is the title of the latest article in the Chicago Tribune by Trine Tsouderos and Patricia Callahan.

The article is subtitled: ‘Researchers’ fears about misuse of their work come true’.

Go now and read it. I’ll pull some examples here, but read the article. Send it to your friends. When a writer tells you to stop reading his own piece and go read something else, he means it.

The article reports on how the alternative medical community in autism has clearly misused some research to create and promote supposed therapies.

The prime example, the misuse of work by a John’s Hopkins team on neuroinflammation in autopsied brains of autistics (e.g. Neuroglial activation and neuroinflammation in the brain of patients with autism. by Vargas , Nascimbene , Krishnan, Zimmerman, and Pardo.)

The John’s Hopkins team showed that neuroinflammation was present in the brains of recently deceased autistics. What they did not show was that this was a cause of autism or that this was injurious to the autistics. As Dr. Pardo told the Tribune:

“We were concerned that the study would raise a lot of controversy and be misused,” Pardo said. “We were right.”

In one example from the article, Dr. Rossignol, one of the luminaries of the autism alternative medicine movement wrote a letter to support the use of intravenous immunoglobulin (IVIG) to treat an autistic child. He cites the Pardo study.

From the Tribune story:

Rossignol did not mention that Pardo’s team had written in its online primer, using capital letters for emphasis, that intravenous immunoglobulin “WOULD NOT HAVE a significant effect” on what they saw in the brains of people with autism.

“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the team wrote.

Another of the Hopkins team, Dr. Zimmerman is quoted:

Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”

Another alternative-medical practitioner, and colleague of Dr. Rossignol, Dr. Bradstreet is not deterred by the experts in the field who warn him off of applying this experimental and possibly (likely?) useless treatment.

“Every kid with autism should have a trial of IVIG if money was not an option and IVIG was abundant,” Bradstreet said. “It makes sense to try and would be ideal to give every young child a chance at it.”

The Pardo paper has also been used to promote hyperbaric oxygen therapy (HBOT). Another big name in the alt-med world, Dr. Neubrander uses the Pardo study in his presentations and claims that HBOT will reduce inflamation.

Dr. Neubrander appears to acknowlege the slim backing he has on science. In the Tribune article:

“Science is slow,” he said. “I will use the safety of the science and, no, I will not throw the science out the window. But the science has to be balanced against the wisdom. And science says, ‘There is no wisdom from you, the mothers or fathers of the world, who depend on anecdote. Only science has wisdom.’ “

I am at a loss as to how to respond to that statement other than to point out that Dr. Neubrander (and Dr. Bradstreet and Dr. Rossignol) will never, ever be allowed to treat my child.

Again from the Tribune:

Few treatments are completely benign, said Dr. Steven Goodman of the Johns Hopkins Berman Institute of Bioethics. “Even an ineffective therapy is rarely harmless,” he said, “and sometimes that harm is worse than the disease.”

As an example, the Tribune article discusses how pure oxygen, assumed to be only beneficial, was given to premature babies. That is, until it was shown that it was causing blindness in a significant number of children.

The Tribune article concludes by acknowledging the fact that there is not a complete description of what is autism, or how or if it can be treated.

Research into autism has yet to find solid answers, but there is reason for hope, said Zimmerman, a co-author on Pardo’s paper.

“In the last five years, there has been a tremendous upsurge of activity,” he said. “It gives us a lot of new prospects. I think we will solve this problem in the next 10 to 15 years.”

And though autism advocates in the movement say they cannot wait that long for answers, a lack of options isn’t a valid reason to try something, bioethicists say.

“You have a duty to make sure there is good reason to believe it might work and not hurt your child,” said Douglas Diekema, a bioethicist at Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute.

It is difficult to be patient while science does its work, Zimmerman said. But, he added: “Above all, do no harm.”

This is one in a series of articles on alternative medicine and autism from the Tribune. I hope to backtrack and discuss the previous articles soon. But, the responses are already coming in. Many frame the Tribune as anti-parent, anti-progress, biased…all sorts of things that the article is clearly not. The Tribune obviously took a lot of time to prepare these articles. They cite the experts in the field.

Let’s face it, the supposed experts in the alternative medical “treatment” of autism are clearly misunderstanding or misrepresenting the research they rely upon. The Tribune did the work, talked to the experts and clearly showed this.

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.

Hyperbaric Oxygen Therapy Ineffective Treatment for Children with Autism

13 Nov

Hyperbaric Oxygen Therapy (HBOT) has grown in popularity over the last few years. This growth has occurred without any evidence that HBOT is at all beneficial.

A recent study, published in the journal Research in Autism Spectrum Disorders entitled Randomized trial of hyperbaric oxygen therapy for children with autism, explores this question.

The study was performed by CARD, the Center for Autism and Related Disorders and ICDRC the International Child Development Resource Center. CARD is a very large ABA provider run by Doreen Granpeesheh. Dr. Granpeesheh is also associated with Thoughful House, the Clinic founded by Dr. Andrew Wakefield. Dr. Wakefield, is the prime proponent of the notion that the MMR vaccine causes autism. ICDRC is the clinic run by Dr. Jeffrey Bradstreet, a prominent name in the autism alternative medical community.

As you might surmise from their press release, Center for Autism and Related Disorders Study Finds Hyperbaric Oxygen Therapy Ineffective Treatment for Children with Autism, they did not find HBOT to be effective.

Children were given 80 1 hour sessions in a Vitaeris 320 inflatable chamber (a model used commonly in HBOT treatment). 6-10 sessions/week were performed. Children were split into two groups matched by age and number of ABA hours already received. Parameters like supplement use and diets remained unchanged during the time of the study. For the treatment group the chambers were inflated to 1.3 atm, with enriched oxygen air (24-28% O2, compared to 21% for regular air).

The children were given multiple assessments:

All assessments were conducted by trained assessors who were blind to group assignment. To maximize the study’s ability to detect change in any symptom area relevant to autism, a large variety of assessments were used, including the following: the ABC (Aman & Singh, 1994), ADOS (Lord et al., 1999), Behavior Rating Inventory of Executive Functioning (BRIEF; Gioia, Isquith, Guy, & Kenworthy, 2000), Clinical Global Impression Scale (CGI; Guy, 1976), Parent Stress Index (PSI; Abidin, 1995), Peabody Picture Vocabulary Test (PPVT-III; Dunn & Dunn, 1997), Repetitive Behavior Scale (RBS; Bodfish, Symons, & Lewis, 1999), SRS, Vineland Adaptive Behavior Scales—Second Edition (VABS-II; Sparrow, Cicchetti, & Balla, 2005), and the Beery-Buktenica Developmental Test of Visual-Motor Integration—5th edition (VMI-5; Berry and Berry, 2004 K.E. Berry and N.A. Berry, The Berry-Buktenica developmental test of visual-motor integration: Administration, score, and teaching manual, NCS Pearson, Minneapolis, MN (2004).Berry & Berry, 2004). The ADOS, BRIEF, PPVT-III, SRS, VABS, and VMI-5 were administered pre and post-treatment. The ABC, CGI, and RBS were administered weekly. The PSI was administered four times, once at baseline, twice during treatment, and once at completion.

The study was relatively small, with 46 participants.

Forty six participants began the study and 12 withdrew, resulting in 18 previous HBOT participants and 16 placebo participants completing all 80 sessions and follow-up measures. The primary reason reported for withdrawal was the travel required to the clinic. One participant in the placebo group withdrew after having a seizure for the first time. Mean participant age was 6.18 (previous HBOT 6.11; placebo 6.25) and mean number of ABA treatment hours per month was 109 (previous HBOT 114.7; placebo 103.3).

I won’t go into details about the specific outcomes, but the conclusion was pretty straightforward: HBOT had no effect.

No significant differences between the previous tHBOT and placebo groups were found on any of the outcome measures. Thus, the results of this study indicate that previous HBOT delivering 24% oxygen at 1.3 atm did not produce a therapeutic effect for the children who participated in our study. Therefore, previous HBOT at this dose is not recommended for the treatment of ASD symptoms.

I found it interesting how they referred to a previous HBOT study by Rossignal (another prominent member of the autism alternative medical community):

The results of this study corroborate the findings of the only other published study on previous termHBOTnext term which included a control group (Rossignol et al., 2009 D.A. Rossignol, L.W. Rossignol, S. Smith, C. Schneider, S. Logerquist and A. Usman et al., Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial, BMC Pediatrics 9 (2009) 10.1186/1471-2431-9-21.Rossignol et al., 2009)—albeit, not the study authors’ interpretations of their findings. In both the Rossignol et al. (2009) study and the current study, both treatment and control groups improved over time, but the difference in improvement between groups appeared insignificant. In addition, the current study employed dependent measures which were far more comprehensive than in previous research on previous HBOT for ASDs, thereby increasing the probability that a therapeutic effect would have been detected if indeed one had been present.

Yes, the current study is consistent with the Rossignol group’s results, just not their interpretation.

Commentary:

There was much discussion and excitement earlier this year when the Rossignol group study came out. Do’C at the Autism Street blog compiled a list of many of the skeptical discussions. There has not been anywhere near the interest in the newer CARD study.

Will this mean the end of HBOT treatments for Autism? I sincerely doubt it. Take a look at Dr. Bradstreet’s website (Dr. Bradstreet being one of the coauthors of the current study showing no effect). The first page of the site still links to the older study by Dr. Rossignol’s group (claiming that HBOT is effective) and not his own study (which shows HBOT to be not effective).

Of course, it is all the more complicated since Dr. Rossignol is also one of the ICDRC doctors. The alternative-medical community is a pretty small pond, isn’t it?

Back to the question: will this mean the end of HBOT in autism? I wish I could make bets this safe. Of course not. No alternative therapy is abandoned. As shown above, one of the authors of this study showing that HBOT is not effective for treating autism and he hasn’t stopped.

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