Archive | Science RSS feed for this section

Mark and David Geier promise its true

4 May

The South Jersey Courier Post carries a story today concerning the father and son team of Mark and David Geier.

They have presented at the branch meeting of the U.S. Autism & Asperger Association concerning their own branch of autism related woo – treatment with Lupron. A process that has led them to stretch the truth beyond breaking point numerous times, claiming false affiliations and using friends and family as members of review bodies in order to pass ethical regulations. In a wider world of autism related woo, this is a particularly sordid story.

The Geiers say excess testosterone increases the toxicity of mercury, which they claim is the primary cause of autism, and that the suppression of testosterone production improves the ability to remove the poisonous mercury — a method often referred to as chelation therapy.

The drug Lupron, or leuprolide acetate, lowers testosterone in autistic children, which then frees up the toxic mercury, the Geiers say. The Geiers, who operate eight offices nationwide under the name “Genetic Consultants,” found that testosterone blocks the body’s ability to make glutathione and that mercury binds to glutathione.

So, the Geier’s are still clinging grimly to the mercury = autism belief. A belief for which there is no sound science whatsoever and so much against it would take too long to discuss in one blog entry.

And they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

Lupron lowers testosterone and…

To prove there is a hormonal connection to autistic children, the Geiers displayed several studies that showed a major side effect of high testosterone in children is precocious (or premature) puberty. The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Weird stats. When I searched PubMed for ‘precocious puberty autism’ I got one result back:

This is a presentation and discussion of clinical and laboratory data obtained on 13 girls with Rett syndrome…..Precocious puberty and respiratory alkalosis were not found in our patients

Huh. Fancy that. Not found. And here the Geier’s are claiming an 80% correlation rate between autism and precocious puberty. Maybe that results from the test they’re using.

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development…

And yet they somehow failed to perform the very simple and definitive test for precocious puberty – an xray of the wrist. If bone age is one year older than their chronological age then they have precocious puberty. Simple. And not done by the Geier’s. You have to wonder why.

And here we have more hidden science.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways.

Next time someone tells you that ‘big pharma’ are using unindependant research, tell them this: science published in a mainstream journal has its methods and results clearly published so that other scientists can attempt to replicate them. That’s about as independent as you can get. Here we have the Geier’s simply saying these kids improved. No methods, no results, no science is shown. We’re just expected to take their word for it. That’s about as unindependent as you can get. Anyone would think the Geier’s have a vested interest in Lupron doing well.

Insurance companies start to abandon quack autism “cures”

3 May

Some good news. Mary Ann Roser reports on the investigations by major health insurers that are creating funding difficulties for autism clinics which specialised in unproven and dubious treatments for autism:

The owner of an Austin-area clinic that treats children with autism — using techniques that are controversial in mainstream medicine — says investigations by three major insurers have left it with a pile of unpaid claims and a crisis: She’s had to lay off most of her staff and drastically reduce the clinic’s hours.

In addition, Kazuko Grace Curtin said the Texas Medical Board is investigating her medical director. She and the doctor — Jesus Caquias — say the investigation is a way of harassing them because they offer nontraditional care for autism patients.
[…]
CARE Clinics is struggling now because Aetna stopped paying claims in August and is questioning “about $1 million” in claims, Curtin said. Cigna and United Healthcare stopped payments in October and are disputing smaller amounts that Curtin declined to reveal. United is paying again but at a lower rate, she said.

“What they were saying is, autism treatment is not established, it’s experimental,” Curtin said.

Spokeswomen for Cigna and United said the reviews were routine to ensure proper payments. Aetna declined to comment.

Curtin said she closed the two clinics in January to cope with the amount of paperwork she had to produce when the three insurance companies challenged charges for all patients treated in October, November and December. She reopened the Austin clinic March 6, but now it’s open 10 days a month instead of 20 and has 10 employees instead of 40, she said. The Tampa clinic won’t reopen until May, she said.

She also is delaying indefinitely a 30,000-square-foot medical building, school, corporate offices, sports facility, lodge and conference center in Dripping Springs.

“I need some funds,” Curtin said, declining to release specific financial details about her business. “I don’t know how long we can survive.”

The bad news is that while CARE Clinics extract money from increasing skeptical insurers, Thoughtful House is careful to extract the money directly from vunerable parents. Read the whole article for the other non-finanicial pressures on such clinics, and the pleas of victimisation from their owners.

HBOT quackery maims 4 year old

2 May

So it turns out that four year old Francesco Pio Martinisi had Cerebral Palsy.

HBOT is not a valid treatment for CP and there is no quality science to support the idea that it may be one day.

There is growing interest in the use of hyperbaric oxygen therapy (HBO2) for children with cerebral palsy. Although there is no rigorous evidence to support this management, private hyperbaric centers have been established throughout the United States and Canada….

They are Italian and in an echo of Tariq Nadama, came to the US for a treatment not offered in their home country. CBS4 states they have spent ‘hundreds of thousands’ of dollars on HBOT ‘treatment’.

Nobody knows why the fire started but one thing is sure. There was no medically indicated reason for Francesco to be in that chamber. This was another totally unnecessary accident.

Woman and child hurt in HBOT explosion

1 May

CBS4 is reporting that a woman and child have been hurt in a HBOT Chamber explosion.

There is no indication that the child was receiving HBOT as part of ‘treatment’ for autism. In fact, there’s no indication the clinic in question practice HBOT for autism at all.

Or thats what I thought until I read this page. Recognise the lead name there?

Dr. Rashid Buttar, D.O., FAAPM, FACAM, FAAIM
Broken Pathway in Autism: The Mercury Poisoning of our Children and Their Inability to Detoxify

The very same Rashid Buttar who I wrote about in 2006? Yes. The same Rashid Buttar who has been subject to numerous disciplinary hearings? Yes.

The owners of this HBOT installation describe Buttar as ‘forward thinking’. Hmm.

And so, I have to wonder – was this child autistic and undergoing a totally pointless HBOT session when the chamber exploded? Time will tell..

EDIT

Orlando Sentinel say:

The boy was flown to Broward General Medical Center. Broward Sheriff Fire-Rescue spokesman Mike Jachles said the boy was badly burned and is in critical condition.

If you’re a praying person, then pray for this boy. If you’re not, then hope for the best outcome.

Two new genetic studies – care required

30 Apr

Its always interesting to read about new quality science and two new genetic oriented studies in Nature give us just that – quality science.

The first of two Nature studies released today found that 65 percent of autistic participants shared a variation between cadherin 10 and cadherin 9, a region of the genome that controls cell-adhesion molecules in the brain. Those molecules help brain cells connect, and autism researchers have long suspected that trouble there may be linked to the disorder.

…

The second study suggested a link between autism and an excess of genetic material associated with ubiquitin, a protein involved with cell-adhesion molecules and connections between brain cells.

Truly fascinating stuff it looks like and yet I think the time is fast approaching when the need for an ethics debate about this becomes paramount.

I am on record as saying that I do not think science could be (as oppose to should be) curtailed when following research interests. In other words, we couldn’t stop an autism researcher from finding a cause or cure even if we wished to. Politics and research science are a bad mix.

However, that should not ever stop us from debating how to use (if at all) such a thing and the following statement from one of the research members is – to me – a bugle call to start thinking of ways we (the autistic community and the scientific community) can do this and remain on good terms:

If we could remove this variant from the population, just take it away … as much as 25 percent of autism would disappear, which is highly significant,” Hakonarson said.

It is indeed, highly significant. It opens up not only a world of scientific possibility bit it must also open up a genuine debate about the ethical issues surrounding this. But before we do this we need to clarify statements like this. 25% of the entire ASD population? 25% of an individual? 25% of the more disabling aspects of autism? 25% of what exactly?

So we need to clarify things like this. Lets hope we can do this very soon and start a respectful debate between two camps who have worked well together up till now – science and neurodiversity.

The problem with the IACC is…

27 Apr

…that Tom Insel is too nice.

OK, that is as oversimplification, but bear with me. Dr. Insel is the director of the NIMH (National Institutes of Mental Health) and the chair of the IACC (Interagency Autism Coordinating Committee). As chair, he gets to run the meetings. Lucky him!

I say that with tongue planted firmly in cheek. Dr. Insel has a tough job trying to manage the IACC.

Let’s back up a little bit. The IACC committee meets regularly to work on producing a plan for the government’s research effort in autism. The idea is simple–gather together a lot of people who can bring their expertise to the table and work together to build a good plan.

Unfortunately, Lyn Redwood apparently didn’t get that memo. Ms. Redwood represents her organization (Safe Minds) as well as the views of a number of other autism organizations who promote the idea that vaccines caused an epidemic of autism.

Lyn Redwood spends each meeting as though it is held for everyone to listen to her talk about vaccines. I know that sounds like an exaggeration–it isn’t. Here is a quote from another member of the IACC committee from a recent meeting, speaking about an effort by Lyn Redwood to insert a large amount of new language into the Strategic Plan.

I’m just a little perplexed as to why we are actually looking at this. Because we worked so hard over many months as a committee and..you know..and as one person in the field who is constantly seeing more and more children with autism this sense of urgency seems to sabotaged by this constant barrage of another opportunity for one person of this committee to constantly try to rewrite the Plan. It doesn’t seem to be the correct process.

Dr. Insel then commented “There are heads shaking here.” “Heads Shaking” is what Dr. Insel says when people are nodding in agreement during a meeting. In other words–a large portion of the IACC agreed with the idea that Lyn Redwood was hijacking the process again!

The problem is, to say it again, Tom Insel is too nice. He gives Lyn Redwood a LOT of leeway to talk about…well, whatever she wants to talk about. Unfortunately, she spends a lot of time talking vaccines. Lots of time. The IACC doesn’t have lot’s of time to spend on any one subject. Especially a subject like vaccines that the rest of the committee clearly isn’t interested in discussing. To make matters worse, many of the discussions are nearly meaningless. “Should we phrase this noncommittal statement this way or that way?”

Another person draining a lot of valuable time from the IACC is Mark Blaxill. Mr. Blaxill is not on the main IACC committee. He is in one of the working groups (think advisory group to the main committee). While, luckily, he doesn’t get to vote in the main committee, in his own way he is worse than Ms. Redwood. He makes long speeches, filled with insults to the other committee members, calling those who don’t agree with him “Epidemic Denialists”.

It strikes this listener that Ms. Redwood and Mr. Blaxill are trying desperately to engage the other IACC people in a debate on the autism vaccine question. Ms. Redwood has offered to bring in papers supporting her position. Thankfully, Dr. Insel avoided that mess. I can easily imagine many of the researchers on the IACC thinking, “Gad! I already wasted part of my life on that junk science when I read it the first time. Can’t we just get something accomplished for people with autism here?” I mean, seriously, does Ms. Redwood think that people haven’t read the papers she leans on? The implications sounds like, “You don’t agree with me. That means you haven’t read these studies.” What she doesn’t understand is that pretty much everyone has read the studies she uses as support for the “mercury and vaccines caused an autism epimic” idea. Everyone has read them, and most who have read them find them to be really bad science. The academics could use them as examples of bad science for their students. Those studies are that bad.

Here’s some much needed background. The IACC committee is made up of a number of professionals and stakeholders. People fly in from all over the US to attend meetings–most of which are only a day long. The agendas are packed; there isn’t much time to waste.

Rather than accept that IACC meeting time is limited and precious, with many topics to cover, both Ms. Redwood and Mr. Blaxill act as though they are in one of Senator Dan Burton’s hearings, where the goal was to get as much of the idea that vaccines cause autism into the public record as possible–whether the science was good or not.

So, what’s happening while Ms. Redwood or Mr. Blaxill are talking? This is where the “Tom Insel is too nice” bit comes into play. Dr. Insel, chair of the IACC, allows them all the time they want to take (and they want a lot of time) to talk about vaccines. I don’t know how much of it is Dr. Insel being polite or how much is an effort to stave off future complaints that the vaccine lobby was excluded from the process. There are likely multiple reasons. Net result–lots of time taken up talking about vaccines.

Well, that’s not really accurate. There is a lot of time lecturing about the supposed vaccine/autism link. You see, there is almost no discussion amongst the commitee. Just the one-sided presentations by Lyn Redwood and Mark Blaxill. The rest of the IACC members often (almost always) remain silent. My guess is that they are just too smart to get dragged into the discussions. Yes, too smart. What purpose would it serve?

From what I can see, the rest of the IACC “gets it”. They “get it” in the fact that they already understand the vaccine debate. I don’t see the point in taking up committee and working group time with Lyn Redwood or Mark Blaxill pretending to be trying to educate the other members. The rest of the IACC also “gets it” in the fact that they understand to avoid getting sucked into the debate. Mark Blaxill would likely enjoy some blog fodder. The likes of David Kirby and Robert Kennedy Jr. would love to take everything out of context and misinterpret it for their own blog readers. All this would come at the cost of people with autism.

Dr. Insel could, I guess, limit the time that Ms. Redwood and Mr. Blaxill use. To be honest, he does manage their time somewhat, but much more would help keep the meetings productive. Dr. Insel is in a hard spot–even a reasonable level of limiting the discussion would obviously be used to fuel complaints that the vaccine debate is being quashed or the process is corrupt.

So, in the end, Dr. Insel plays the nice guy. What else can he do? Lyn Redwood and Mark Blaxill take advantage of it and, in the end, it is people with autism who pay the price when the IACC meetings are hijacked and the sense of urgency is lost as one person tries to rewrite the strategic plan.

Professor Simon Baron-Cohen Speaks

22 Apr

Professor Simon Baron-Cohen of Cambridge University’s autism research team wrote a piece for New Scientist recently about media distortion:

WHEN media reports state that scientist X of Y university has discovered that A is linked to B, we ought to be able to trust them. Sadly, as many researchers know, we can’t.

He talks about the Observer debacle of 2007 and how that paper made a total hash of leaked data. At the time Baron-Cohen said:

The draft report, he says, “is as accurate as jottings in a notebook”

The big furore was that the paper was working on prevalence rates and mentioned a few rates of autism from 1 in 58 to 1 in 200. Guess which one the Observer decided was the more newsworthy? Baron-Cohen again:

Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers.

So it was really a total non-story. Some scientists were working on a paper about prevalence and had some unadjusted figures. At that point, someone in the team decided to leak the unadjusted report to the press who swallowed it hook, line and sinker.

Fast forward to last month and the Daily Mail runs a story:

Researchers now believe as many as one in 60 children has some form of the condition.

Up and down the blogosphere at the more credulous blogs and news pages the 1 in 60 figure is touted about. Indeed, only yesterday on the Age of Autism John Stone was claiming Baron-Cohen’s silence about the Daily mail article in his New Scientist piece as proof definite that the 1 in 60 figure was accurate:

The most significant thing about Simon Baron-Cohen’s recent New Scientist grouse about media irresponsibility and science (HERE) was that he did not mention the publication just a few days earlier in the Daily Mail of his latest – if long delayed – figure for the prevalence of autism in the UK school population of 1 in 60….

Given the importance of this figure – a true rate 66% higher than formerly acknowledged – the long term reticence of Baron-Cohen and the study’s sponsor Autism Speaks UK is dismaying – indeed Science Media Centre and Autism Speaks UK were still apparently trying to deny it to the Mail ahead of publication of the article.* But the silence of all these parties, and most particularly of Baron-Cohen after the Daily Mail article came out suggests that they did not have a leg to stand on.

When John Stone speaks with certainty in his voice, that is a certain clue that something is not as it seems. So I decided to email Professor Baron-Cohen to get his take on the Daily Mail. After a chat about what it meant he obliged me with an exclusive quote:

The Daily Mail was irresponsible in reporting on the results of our study before it was published in a scientific, peer-reviewed journal and where the details of the study are publicly available for scrutiny. The study will be published in the British Journal of Psychiatry on June 1st 2009.

My own opinion based on the discussion we had and that quote is that the paper might not be quite what it appears from the abstract posted at IMFAR. At any rate Professor Baron-Cohen is right that the Daily Mail have – just like the Observer – acted very irresponsibly. So are those that are reporting a UK prevalence of 1 in 60. Irresponsible and very previous.

Thrown under the bus…but for a good cause, right?

21 Apr

America is a wonderful place. Where else can someone publish absolute garbage, refuse to retract it, accuse the government of being involved in a massive conspiracy–and still end up on a government committee?

I am speaking of Lyn Redwood. She is one of the coauthors on ‘Autism: a novel form of mercury poisoning’. This was ‘published’ in Medical Hypotheses. I put ‘published’ in quotes because Medical Hypotheses is a pay-to-publish pseudo-journal that has no review (peer or otherwise) at all. OK, the editor does check that the authors are talking about something medical, and makes sure that some sort of narrative is put together. But, scientifically? No review. Too many people, especially those parents with new autism diagnoses for their children, are unaware that “Medical Hypotheses” ‘papers’ have no place next to actual research papers.

If that piece of junk science wasn’t enough, Ms. Redwood was also a co-author on another less-than-worthless Medical Hypotheses ‘paper’, Thimerosal and autism? A plausible hypothesis that should not be dismissed. The first author on that “paper” was Mark Blaxill. Truly, one of the scary moments in the Omnibus proceeding came when the research head of ARI (Autism Research Institute) referred to Mark Blaxill as “brilliant”. No exaggeration–that was a frightening thought to this listener. Mr. Blaxill is probably rather bright and likely good at whatever he does professionally. But the idea that the information is traveling from him to the research head of the Autism Research Institute rather than the other way around is just scary.

The time to pay-to-publish retractions of these papers was years ago. Yet, both papers are still out there, and new parents usually won’t find out for a long time that those papers a junk.

Besides promoting bad science, what do Ms. Redwood and Mr. Blaxill have in common? Well, the Interagency Autism Coordinating Committee, for one thing.

Ms. Redwood sits on the Interagency Autism Coordinating Committee. This group helps coordinate the US Government’s research efforts on autism. Rather that fight for better understanding and services for, say, adults, the poor, or minorities with autism, Ms. Redwood filled meeting after meeting (after meeting) with struggles to get the wording of the Strategic Plan as close as possible to a government admission that vaccines cause autism.

Mark Blaxill sits on one of the working groups for the IACC, probably placed there by Ms. Redwood. Mr. Blaxill, also a co-author on a number of papers that any reasonable person would have retracted by now, has wasted considerable meeting time with long, insulting ramblings. I know there are people who appreciated Mr. Blaxill’s speeches, but I consider likening the other people on the committee to holocaust denialists insulting. Maybe I misinterpreted his repeated use of the phrase “Epidemic Denialists”. If so, I bet I’m not the only one. Somehow, I don’t think I’m wrong. It appears to be an insulting and deliberate choice of phrases.

Unfortunately for the undercounted communities like adults with autism, the poor with autism, minorities with autism–a number of our own–they present an “inconvenient truth” to people like Mark Blaxill and Lyn Redwood. They demonstrate that the numbers groups like SafeMinds use to promote the faux autism epidemic are terribly flawed. If we are still under counting people with autism in the U.S., how can we use the counts from the California Regional Centers or from education data so far as “evidence” of an “epidemic”?

I know I wrote about this issue recently. But, reading the expert report by Dr. Rodier, and writing about it, I realized anew that a few individuals have caused this harm. And, those few individuals could (and should) work hard to correct that harm.

So, in place of calling on the IACC to fund research that could help the under counted, Ms. Redwood and Mr. Blaxill got this paragraph:

Research on environmental risk factors is also underway. An Institute of Medicine workshop held in 2007 summarized what is known and what is needed in this field (Institute of Medicine of the National Academies, 2007). Numerous epidemiological studies have found no relationship between ASD and vaccines containing the mercury based preservative, thimerosal (Immunization Safety Review Committee, 2004). These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder. Public comment to the Committee reflected opposing views on vaccines as a potential environmental cause. Those who are convinced by current data that vaccines do not play a causal role in autism argue against using a large proportion of limited autism research funding toward vaccine studies when many other scientific avenues remain to be explored. At the same time, those who believe that prior studies of the possible role of vaccines in ASD have been insufficient argue that investigation of a possible vaccine/ASD link should be a high priority for research (e.g., a large-scale study comparing vaccinated and unvaccinated groups). A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

Let’s just pull that last sentence out for emphasis, shall we?

A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD.

It’s odd to me–I would have fought that language if I were Lyn Redwood. I would have pointed out that I have a broader perspective than just vaccines, and that I also care about development of effective treatments, services and supports. Isn’t it just a little sad that the people who are pushing the vaccine connection don’t have the view that effective treatments, services and supports for those with ASD’s are a top priority?

But, it wasn’t their top priority. It still isn’t. In the end, Lyn Redwood and Mark Blaxill, people who are on the IACC to represent the interests of the entire stakeholder community, threw the underrepresented autistic communities under the bus.

Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

Tags: , , ,

← Older Entries
Newer Entries →