Autism News Beat – A Round Up

NEW BLOGS FOR OLD

There is a new blog on the block. Autism News Beat opened with this.

“I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story.”

The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding  ABA. This is akin to backing Stephen Dawkins in an argument against  intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]

RDI

Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to “cure” his autism. He was loved and accepted by  a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.

Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem’s mother, Sabelle Jelani and to her proposed school.

PC  VERSUS FC?

Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am  thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.

DISABILITY RIGHTS KNOWS NO BOUNDARIES.

Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome  The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:

‘Not to worry, there are plenty of places for children like him.’ And she said, ‘In any case, they don’t live long.'”

Attitudes have changed, as the article makes clear.

“Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down’s syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life.”

Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to  decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.

DISABLED SEX LIVES!

I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships?  If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.

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Another window opens

Early diagnosis of autism brings obvious benefits. It means you can make an early start to understanding your child and meeting their needs. Early intervention is generally agreed to be A Good Thing. Some people take it further and argue that early intervention is The Only Thing. There is supposed to be a limited window of opportunity while the young child’s brain is still developing. During this time intensive behavioural interventions are supposed to have the best chance of success. Success in this context usually means recovery or normalization in which the child becomes indistinguishable from their peers and loses their diagnosis.

There are several reasons to question this scenario. E.g. the window is larger than we think. Brain development continues into adolescence. People who suffer accidental brain damage often manage to regain lost functionality despite loss of brain cells. Brain cells can regenerate, even in adult life. How this relates to autism is not clear cut. But if our brains can change and develop throughout our lives we should expect change and development in the brains and lives of autistic people as well.

I have seen this in the children I teach.  Severely autistic 3 year olds in our nursery  often make amazing progress as they develop and mature. Their degree of cognitive impairment seems a more important predictor of future outcomes than the severity of their autistic symptoms. I see regression as well, especially in the teenage years when the pace of change can trigger all sorts of crises.  It is often temporary, with balance restored by the time they leave us as young adults.

All of this is anecdotal – the impression gained from a quarter of a century in special ed. But a recent study, Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder,   provides data to support my impression and extend it into adult life.

Paul Shattuck and his research partners studied a group of 241 autistic people over 54 months. It was a varied group, ranging in age from 1o to 52. The mean age was only 22 so the sample must have contained proportionately more younger than older autistics. The abstract refers to subjects with an autism spectrum disorder and so presumably includes subjects across the spectrum. We learn that 69 per cent have some degree of mental retardation, which suggest there were rather more people with Autistic Disorder than with PDD-NOS or Aspergers.

According to the abstract and the press release from George Washington University the significant findings were that:

  • Although many individuals’ symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms.
  • Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time.
  • Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.

Why some people improve is being investigated as part of the ongoing study. But as it stands this is tremendous news. It means that parents of children who get a late diagnosis have not necessarily missed the boat. Parents of newly diagnosed children also do not need to rush into anything. The window is bigger than you think. Take time to gaze into the window. Learn about your child and choose wisely from the range of options before you.  

This is also good news for autistic adults. The older ones made the most signficant gains. Growing up might be hard but being a grown up is better.

I only hope that the numpties behind anti-vaccine outfits like Safe Minds, Generation Rescue and NAA do not resort to the same lies that they heaped onto Paul Shattuck the last time he published a piece of scientific research that contradicted their prejudices.

A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

New Scientist and the Autism Omnibus

New Scientist has published an interesting commentary on the Autism Omnibus  proceedings that are taking place in the United States Court of Federal Claims.  They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question  over whether or not she is the victim of vaccine damage.

New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.

Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ‘big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.

Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.

One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner  Harris, a reporter with the New York Times observed that:

It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.

I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.

It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.

The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.

And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.

He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.

So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.

Last time out he did not do so well. According to his biography on Wikipedia:

Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case[12] regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.

Amongst the criticisms in the judge’s decisions,[13] Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”

The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.

New Scientist also mentions Robert Nataf, a French chemist.

One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).

While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.

If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.

Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.

New Scientist concludes:

While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?

Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”

Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.

Downs but not out.

Down’s syndrome novel tugs at America’s heartstrings

Moving tale that highlights genetic condition becomes sleeper hit of the year

Paul Harris in New York
Sunday June 17, 2007
The Observer

Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite – or perhaps because – it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.

According to the Observer

The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.

This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.

Apparently many prospective parents of Downs children do not believe that their child will be happy.  Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.

The relevance to autism

With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.

A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.

This is damaging for a number of reasons.

  1. If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
  2. To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
  3. If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
  4. Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.

As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.

Science, fiction and factions

THE APPLIANCE OF SCIENCE

Kev has just blogged about a piece of research that examines the effects of Rhesus immune globulin (RhIg) on mothers of autistic children. RhIg is routinely given to pregnant women who are Rhesus negative to stop their immune systems from attacking their unborn babies. Because RhIg used to contain thimerosal, anti vaccine pressure groups who blame thimerosal for causing autism, have tried to implicate RhIg as well. A recent attempt to link an RhIg called Rhogam and Autism collapsed when the judge decided that the expert witnesses in the case were not up to the required standard. Kev blogged this as did Autism Diva, Orac, and Prometheus while Kathleen provided a HTML version of the decision on neurodiversity.com

According to a press release issued by the University of Missouri-Columbia

The results showed that in children with autism, Rh negative status was no higher in their mothers than in the general population, that exposure to RhIg (preserved with thimerosal) before birth was no higher and that pregnancies were not more likely to be Rh incompatible.

The press release quotes researcher, Judith Miles as saying,

We hope this report of no association between autism, Rh negativity and thimerosal exposure during pregnancy will offset some of the decreased compliance with immunization recommendations which is known to increase morbidity and mortality from childhood infectious diseases.

KNEE JERK REACTION AND FOOT IN MOUTH

This has produced a predictable response from Safe Minds spokesman, Mark Blaxhill, which Kev has demolished. But others are even more intemperate. Take Michael Wagnitz, for example. Writing online for the American Chronicle, in the space of 500 words he manages to imply that:

  • The researchers have been bought off by Johnson and Johnson to fabricate results that will aid them in vaccine damage litigation. Specifically he accuses them of suppressing data.
    • Originally, it was stated that the study contained 47 mothers with more than one child with autism. The published study lists only 16 such cases. Where did the other 31 cases go? Did they just disappear because they did not support her conclusion? Is this proper scientific ethics? This “data adjusting” is becoming quite common by mainstream autism researchers
  • They are deliberately sacrificing the interests of autistic children to promote their careers.
    • As a major player in the autism is a psychiatric condition caused by some unknown gene, the author knows that billions of dollars in research money is out there to be had. What will become of these “mercury apologists” if these kids ever receive proper treatment for what is causing their illness? Their multi-million dollars of funding will dry up. Their arrogant, controlling power trips will be over. They will become irrelevant.
  • A previous paper was “solicited” by Pediatrics and contained serious factual errors 
    • One paper cited, Nelson and Bauman 2003, was a paper solicited by Pediatrics to say that thimerosal does not cause autism. This paper was received and published on the same day. Did this paper even go through the peer review process? This paper is infamous for stating that ethyl mercury does not enter the brain.

Wagnitz is either ignorant or a liar. Here is a quote from the original paper.

 The passage of methyl mercury across the blood-brain barrier is facilitated by an active transport mechanism, whereas the passage of ethyl mercury into the brain does not have such a transport system and is further hindered by its larger molecular size and faster decomposition.32 At equivalent doses, higher levels of mercury have been found in the blood and less in brain following administration of ethyl mercury than methyl mercury.33 These findings support the observation that the risk of toxicity from ethyl mercury is overestimated by comparison with the risk of intoxication from methyl mercury.34 Ethyl mercury exposure has been reported to be more likely than methyl mercury to produce lesions of the spinal cord, skeletal muscle, and myocardium.8

In other words, Nelson and Bauman were arguing that exposure to ethyl mercury delivers less mercury to the brain than methyl mercury, not no mercury. Now, according to his byline on the American Chronicle, Michael Wagnitz has over 20 years experience evaluating materials for toxic metals. He currently works as a chemist in the toxicology section of a public health lab evaluating biological samples for lead and mercury. So I assume he knows how to read a journal article. Perhaps he was distracted by thoughts of his own vaccine damage case on behalf of his autistic child. This is a potential conflict of interest that he fails to mention in any of his articles about mercury and autism.

THE CURIOUS CASE OF …

Now, it is a curious fact that, while the mercury malicia automatically cast doubt on the credibility of any scientist whose work contradicts their case on the grounds that all scientists have sold their souls to big pharma and big government, if on the other hand a scientist can be persuaded to support their case, his or her scientific credentials are trumpeted to the heavens as incontrovertible proof of their reliability, impartiality and all round good guy credibility. Thuswise is Michael Wagnitz elevated to stardom by Ginger Taylor who gushes over the fact that Michael Wagnitz is an actual chemist who understands mercury.

AND FINALLY

Science operates via peer review. Someone or somebody’s research team suggests a hypothesis. Someone else comes up with an idea to test it. Somebody does the test and presents their work for publication. Fellow professional do the peer review. They look at the work and decide if it is worth publishing. It is. LUCKY YOU!

Peer review does not operate via bullying, lying, smear tactics or any other strawman or ad hominen attacks. This is in stark contrast to most of the outpourings of the litiginous mercury malicia. They are distorting science with their unreal and unscientific demand for certainty. They demand answers. Mostly all we have at present are questions.

Rett reversal and neurodiversity

Rett Syndrome is unusual amongst autistic spectrum disorders for two reasons

  1. It is far more common in girls than in boys.
  2. We know what causes it – a mutation of the gene MECP2 on the X-chromosome.

Because it is genetic, Rett parents have not been chasing cures like some autism parents. This has made Rett syndrome a relatively quack free zone, so far. On Thursday a team of researchers led by Dr. Bird of the University of Edinburgh announced that they had successfully activated the MECP2 gene in mice using Tamoxifen and that this had led to a reversal of Rett like symptoms and an improvement in brain function. Kev and Kassiane have both blogged their concerns that the purveyors of autism quackery will try to exploit this and I share their concerns. Fortunately Dr. Bird is not only a very good scientist. He is also an able communicator. The Rett Syndrome Research Foundation have published a video of Dr. Bird talking about this research in which he says, 

Tamoxifen only works in this context because the mice have been set up to respond to it by activating the MECP2 gene. But in order to get them to do that it was necessary to alter the struture of the gene in specific ways. It would have absolutely no effect in humans.

So, why all the fuss?

Firstly, this confirms the work of Dr. Huda Zoghbi who discovered the link between MECP2 and Rett Syndrome in 1999. I find this particularly satisfying because it was Dr. Bird who discovered the MECP2 gene in 1990. More importantly it suggests that if scientists can find out how to correct the mutation in the MECP2 gene in humans it may be possible to reverse the symptoms of Rett Syndrome. Girls have two copies of the X-chromosome, one from each parent. Research suggests that most of the mutations are inherited from the father. If scientists could find a way to inactivate the chromosome carrying the mutated gene and activate the normal back up would it work like the mouse experiment? That is the hope and the expectation expressed by Dr. Bird. It is still a long way off. The paper concludes that

The experiments do not suggest an immediate therapeutic approach to RTT, but they establish the principle of reversability in a mouse model and therefore raise the possibility  that neurological defects seen in this and related human disorders are not irrevocable.

Autism Acceptance and Neurodiversity

Rett parents have long practised acceptance out of necessity and got on with the job of seeking those treatments and therapies that help their children. In the broader autism movement there have been similar arguments from necessity. Time spent seeking a non-existent cure is lost time. It is much better to get on with the job of relating to your autistic child and finding ways to help them. The quest for a normal child can impede that relationship and the child may feel your disappointment and be affected by it. The most terrible thing my son ever said to me was, “I wish I could have been the little boy you never had.” There is every possibility that non-verbal, apparently low functioning autistic children may harbour similar thoughts. So autism acceptance may be therapeutic, both for children and their caregivers

There are also arguments from diversity. These have arisen from within the autistic community, based on the concept of neurodiversity. Autism is seen, not as a defective way of being, but as a different way of being. There are autistic strengths as well as weaknesses. But science continues to see autism purely in terms of deficit. We should seek to celebrate diversity instead of trying to stifle it.

Some would go further and argue that autism is neither a medical nor a scientific phenomenon. Rather it is a social construct with a history that is open to deconstruction and reinterpretation. Larry Arnold discusses these ideas on his blog, most recently in his entry Autism, it’s not what you think, it’s how you do.  

The ideas of neurodiversity speak to a wider audience than just parents. Though parents like myself have been persuaded by their arguments. Autistic adults are campaigning over human rights, not just for themselves but on behalf of autistics who are subject to questionable treatment in schools and institutions. Clinicians and researchers are being encouraged to move away from a disease model of autism and to start from a position of respect for the autistic condition. Autism organizations are being asked to take account of the opinions of autistic people and to include autistic people in their governing bodies. The National Autistic Society has made great strides in this respect. The page on their website entitled “Is there a cure?” begins with this quote from Joshua Muggleton, an autisic teen.

 “We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don’t kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know, that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us.”

The page ends like this.

Although this page has been written primarily for the parents of newly-diagnosed children, it may be helpful to note the viewpoints of some adults with autistic spectrum disorders. There is a growing movement amongst autism activists who don’t think in terms of ‘curing’ a ‘disorder’ but instead of celebrating difference. Please take time to read their viewpoints below.

It then links to stories about the Autistic Liberation Front, to Autistics.org, Neurodiversity.com and Don’t Mourn For Us.  Whenever I get impatient with how slowly the NAS is moving I return to that page before turning to Michelle Dawson’s blog that documents the uphill battle with Canadian autism advocates who see normalization as the only option for all autistics whether they want it or not.

Is our position under threat?

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices. 

Neurodiversity has  nothing to fear from sound research like Dr Bird’s. It helps to clarify our understanding of autism and adds to our understanding of neurology. Rett itself is a spectrum condition. Kerr et al  have identified both strengths and weaknesses in Rett Syndrome and discuss the complexity of the symptom mix. Rett Syndrome has always seemed a very atypical pervasive developmental disorder. Whereas most PDDs are diagnosed on the basis of behaviour, Rett has distinct physical symptoms. These can be very distressing and potentially life threatening. I see no contradiction between wanting to relieve those symptoms and valuing diversity.

Part of the problem is that a lot of our thinking about neurodiversity has been shaped by our opposition to those who have sought to demonize autism and to eradicate it by any means necessary. Autism Diva has compared their position with the more positive attitude of Rett parents prior to Dr Bird’s research.  And now there is hope for a possible cure they are not crying out to Cure Rett’s Now! In a video of parental responses one father expressed a hope that he might hear his daughter speak before he died, even if he had to wait until he was eighty.

Dr. Bird’s research raises important questions about getting the balance right when discussing treatments and cures in the context of respect for neurodiversity. It is a challenge, not a threat, and one that I welcome.