First, an apology.
My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.
When reading the comments I noticed a number of common themes. Liz summed up a lot of these themes in an insightful comment:
I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!
There are four main ideas here.
Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.
Consequently they claim that there are no answers to autism.
Parents are not impressed by this and look elsewhere.
They find their own answers and their children make progress.
These are very important points. When you get diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.
Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.
This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.
Prevalence: up to 90/10,000 of those <16yrs old - estimates vary considerably. Sex ratio M/F = 3.
Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.
70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence. 15% will lead an independent life.
Apply for benefits (disability allowance if in UK).”
Fitzpatrick goes on to write,
“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”
Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.
NO HOPE or FALSE HOPE?
Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like ”there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.
CAUSE and EFFECT
Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve. I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified
Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.
Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.
This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:
We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.
COMMONSENSE versus SCIENCE
There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:
The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.
Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.
Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.
When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.
But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.
Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.
“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)
We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.
Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.
JENNY and I.
Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!
Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.
YOU and I
I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.
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.]
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.
A recent report in the Guardian provoked some furious responses in their Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in the womb carries a predisposition to autism. The furore came in response to the final paragraphs.
If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.
“There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”
This is my summary of the criticism generated by Simon Baron-Cohen’s statement.
The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support and are going to end up in life-long residential care?
And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.
Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote
Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.
Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,
mogrammy – no, sorry – that’s twaddle. It is a neurological condition – and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.
Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.
I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.
I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.
After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.
It confirmed that there are not just two camps – the curebie fanatics and the neurodiverse – slugging it out with each other in the blogosphere. The question is more complex than that.
I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)
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 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, 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.
This week’s New Scientist contains the first major discussion of the Autism Omnibus Proceedings that I have seen in the UK media. There are a few minor inaccuracies. For example the Omnibus is not just about thimerosal. There are three theories of general causation proposed by the Petitioners Steering Committee: thimerosal; MMR; thimerosal and MMR combined. And the case of Michelle Cedillo with which the proceeedings have opened is based on the final hypothesis, that thimerosal containing vaccines administered in the first year of life damaged her immune system to such an extent that the MMR caused her to become autistic.
Leaving aside the particulars of individual cases the New Scientist makes some important points. After outlining the preponderance of scientific opinion against thimerosal as a causative factor in autism the New Scientist editorial goes on to say,
On the surface then, this looks like a battle between the reasoned arguments of experts and irrational parents. This is how health officials have interpreted vaccine disputes in the past, but in so doing they alienated the people they are meant to be advising.
In the UK, a similar debate kicked off in 1998, when scientist and doctor Andrew Wakefield cast doubt on the safety of the measles, mumps and rubella (MMR) vaccine. The response of the medical establishment was well intentioned but disastrous. Experts met behind closed doors and emerged to tell the public the vaccine was safe. Leaflets gave celebrity endorsements of MMR. Rather than examine Wakefield’s claims, which were shaky at the time and are now widely discredited, the government merely told parents not to be silly. Not surprisingly, parents did not buy it. Take-up of MMR fell from 92 to 82 per cent, close to the minimum level needed if isolated cases are to be prevented from developing into epidemics.
At the time of the MMR crisis I remember feeling patronized and my intelligence insulted by what seemed like another attempt to replace serious debate with a public relations spin job by the government and their officials. They made me want to believe Wakefield. And for a while I very nearly did.
Let me be clear. I am not denying. that a small number of children do have adverse reactions to vaccines, sometimes with disasterous consequences. But prior to vaccines every child had adverse reactions to the diseases we vaccinate against and many of the outcomes were tragic. I speak as a survivor of measles, mumps and whooping cough. Today’s parents may be forgiven for failing to appreciate just how serious these diseases can be. The very success of the vaccine programme has led to complacency in this respect.
It has also contributed to the high level of risk aversion in the affluent societies of the world. In my grandparents time it was expected that some children would die. Around 100 years ago infant mortality rates in the USA and the UK were horrendous. One in ten children died before their first birthday. That would put the UK and the USA in the top ten for infant mortality today ahead of countries like Ethiopia and Sudan.
Vaccination rates have contributed to the steady decline in infant mortality. As it happens the current US figure of just under 7 children in a thousand for infant mortality is slighter higher than their rate for autism.
But parents do not consider statistical probabilities when making decisions about their child. When you sit in the doctor’s waiting room with a healthy 18 month old infant in your arms the chances of them dying in infancy are miniscule compared to the chance that they might develop autism. And if there were the tiniest doubt in your mind about the safety of childhood vaccines you would walk out of that waiting room.
In reality most parents have vaccinated their children with overwhelmingly positive outcomes. But for a minority of parents the doubt has been planted post hoc and some of them have thus been led into the logical fallacy of post hoc ergo propter hoc and blame the vaccines for causing their child’s autism.
The New Scientist suggests that the way to avoid this in the future is for scientists to be
open, and admitting what science does not know. It takes time and effort, but the alternative is that parents and health officials talk past each other.
I can see their point. For a long time science has been presented as the infallible source of truth, not by scientists but by opinion makers in politics and the media. A minority of scientists may have been seduced by this and others have challenged it. But I suspect that most have got on with the job, oblivious to the impact that reports of their work have on public opinion.
However, I am not convinced. Most people’s perceptions of science are not based on what scientists say, but on media reports of what they say. And the standards of science reporting in the popular media are frankly terrible.
This is caused by a mixture of ignorance and laziness that even affects magazines like New Scientist, for whom scientific ignorance should not be an issue. Yet too often they carry short reports based on pilot studies that are not yet ready for public consumption. These are then picked up by the non-scientific media and presented as “proof positive” when no such proof exists.
As an example of laziness, their main article on the Autism Omnibus proceedings contains a reference to mercury as “a known neurotoxin.” Amongst the anti-vaxers this carries the subtext, “They knowingly injected a neurotoxin into our children.” They did it on purpose, dammit!
Is there any circumstance in which New Scientist reporters would describe a substance as an unknown neuro-toxin? The phrase, known neurotoxin, is code for a whole set of assumptions to which New Scientist certainly does not subscribe, but to which it gives unwitting approval by the careless use of language.
Overall, the New Scientist coverage is informed by support for the standards of scientific proof and rigorous criticism for those who fall short of those standards. At the same time it respects the sensibilities of those for whom autism and its causation is not primarily a discussion of scientific principle but a very personal and immediate issue. This discussion has focused primarily upon the issues raised by the New Scientist editorial. I hope to return to the substantive article tomorrow.
After 5 years of delays and legal wrangling the Autism Omnibus proceedings have finally begun. Arthur Allen has blogged about the trial and in one of his posts asks the question, Are they seriously trying to win this case? This is a good question. There are nearly 5000 children involved in the Autism Omnibus proceedings whose parents claim that either
- Thimerosal containing vaccines (TCVs),
- or a combination of the two
are responsible for their child’s autism. The omnibus amalgamates all their claims. The special masters presiding over the vaccine court will hear three test cases for each of these three potential causes. As I understand it they will decide whether these individual cases are the result of vaccine damage and award compensation accordingly. They will also decide whether the evidence in these cases supports the general theories of causation presented by expert witnesses for the claimants. If they do it will greatly ease the path of all the remaining claimants for compensation and probably bankrupt the vaccine manufacturers unless they are bailed out by the US government.
So you would expect the family selected to bat first for the claimants to represent their best shot, to be the most straightforward, indisputable case they had. You would also expect the expert witnesses in the case to be fully prepared and briefed for what is in effect a class action suit on behalf of nearly 5000 families.
Sadly, for the Cedillo family who stepped up to the mark for this historic hearing, this seems not to be the case. Left Brain/RightBrain and Autism Diva have written detailed discussions with extensive references to the transcripts of this opening case, which expose the weakness of the case presented by expert witnesses for Michelle Cedillo.
Michelle Cedillo’s is a tragic case. According to Arthur Allen
Michelle is very ill. In addition to her autism she suffers from inflammatory bowel disease, a seizure disorder and chronic eye inflammations that have left her 90 percent blind. She was pushed into the courtroom in a wheelchair because arthritis has left her unsteady on her feet, her mother testified.
But even if she wins, how can such an obviously sick child support a general theory of causation amongst autistic children who are not blind, suffering from IBS, siezures and crippled by arthritis? And it is a big if. The testimony of her expert witnesses is less than convincing. On the balance of evidence presented so far Michelle Cedillo could easily lose her case.
And what then for the family? Their daughter is seriously ill. Someone has persuaded them that her problems are vaccine related and that by pursuing this claim they will obtain the compensation that will guarantee their child’s future. The family have my complete sympathy. I do not blame the parents for believing their lawyers’ arguments and accepting the claims of these so-called experts. But if those lawyers and their expert witnesses are laughed out of court what will happen to the Cedillo family and all the other families relying on their case? Do the anti vax campaigners have their own Anti-Vaccine Injury Compensation Fund to help the families left high and dry in the wake of their failed agenda?
Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation.
I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe.
Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ language is English? Does the confusion change with an arguably more complex language such as Portuguese?
A genetic study of autism in Costa Rica reported that one of the major hurdles to overcome was that the standard research instruments (ADI-R, and ADOS) were only available in English and were unlikely to be translated by the intellectual property owners because of a perceived lack of market to repay their investment. A similar problem exists for IQ tests where no norms exist for Latin American countries.
An unprecedented amount of money has been spent in the last decade on Anglo-centric autism research including more than $100 million in 2006. A new study to understand autism in the non-Anglo world has recently begun yet the research is limited to countries on the Asian continent. There is currently a dearth of research on autism from a Latin American perspective and this is a huge gap in knowledge.
The importance of this gap can be brought into clearer focus by consideration of the tens of billions of dollars that are spent in the US annually on ‘special education’, the increasing proportion of students from Hispanic origins in the public school system and the unfortunate prevalence of significant misdiagnosis of special education needs of minority students.
I would be very interested in hearing thoughts, opinions, diatribes, etc on this issue.
So would I. Is there any research into how different mother tongues might affect the presentation of the language difficulties in autism? As an example, I do not know if such a language exists, but you could not have pronoun reversal in a language that had no personal pronouns.Social and cultural aspects of autism including, but not restricted to language differences, are potentially as important as the genetic and medical aspects that get most of the attention. Roy Grinker, in his new book, Unstrange Minds, looks at autism as a world wide phenomena and includes an extensive section on Korea, where Reactive Affective Disorder, which is essentially blamed on bad parenting, is actually preferred as a diagnosis over autism. An interview with the Guardian reported that,
In such a setting, reactive attachment disorder is a popular diagnosis, Grinker believes, because the condition simply blames the mother: That’s the more culturally appropriate diagnosis, you see, because it means there’s just this one person – the mother – who’s to blame.”
The alternative, to admit to a genetic element, would bring shame on all the family. This may be a factor affecting the perception of autism in other communities were family traditions are strong and women traditionally have a subordinate role. This excerpt from Roy Grinker’s website shows how serious the problem is. And also how things are changing for he better.
Milal School. This is a wonderful school for children with autism called Milal School in an area of Seoul called Ilwon-dong. For me, it is a symbol of how things are changing for the better in Korea. When it was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism. Today, the Milal school is a jewel in the Ilwon-dong neighborhood where hundreds of neighbors volunteer. The architect was given an award for the building. And the gym is used for community events, such as concerts and church services. In the afternoon, when school lets out, families come by to pick up their children and sometimes take a leisurely walk in the neighborhood, for all to see.
Cultural differences may be a factor in other aspects of autism research. When I attended the NAS International Conference in London two years ago a delegate from South Africa pointed out that nearly all of the genetic research was based on North American and European data with virtually no input from the southern hemisphere.
More recently, supporters of the link between vaccines and autism have tried to cast doubts on the validity of research by Eric Fombonne that demonstrated no connection between MMR and autism. They did this because he combined data on autism from anglophone districts of Canada with data on vaccines from francophone districts. There is a full discussion of the critique of Fombonne’s study at Interverbal; Reviews of Autism Statements and Research.
While it is extremely unlikely that language differences affect reactions to the MMR vaccine could cultural differences impact upon the diagnosis levels in francophone and anglophone parts of Canada? This is not an idle question. Autisme Europe won a case against France before the European Commitee of Social Rights in Strasbourg, in part because the cultural dominance of psychodynamic theory in France was instrumental in denying French autistic children an appropriate education. Could such a bias affect francophone communities around the world? It is worth noting that Fombonne is a French psychiatrist who does not adhere to psychodynamic theories of autism.
So, thank you, Michael Danatos. Your question raises all sorts of interesting possibilities.
AUTISM IN CANADA
Regular readers of Michelle Dawson’s blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas, to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.
These self appointed ‘autism advocates’ argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline figures for autism prevalence and suggest that all of these are victims of an epidemic that robs children of their humanity and condemns them to live out a worthless existence unless they can be recovered. They ignore the existence of Canada’s autistic adults and when adults like Michelle Dawson challenge them and speak out for recognition and acceptance, she is vilified.
So I was pleased to read today of this research project in Canada
Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism.The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger’s syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.
Positive aspects of autism? what will Canada’s ‘autism advocates’ have to say about that? When they publish their results,
the team hopes to dispel some of the stereotypes in mainstream media and pop culture.
Many of these stereotypes are being reinforced all the time by the propaganda coming from the mainstream autism societies. It is good to see that while they may be setting the political agenda regarding autism in Canada, there is still an independent tradition of enquiry amongst Canadian academe.
THE AUTISM ACCEPTANCE PROJECT
This is as good a time as any to remind people of The Autism Acceptance Project, [TAAP] which is also based in Canada. The website has just had a makeover and carries the inspiring title, “Tapping into Human Potential and Dignity.” and remember to add TAAP founder Estee Klar Wolfond’s blog to your feed along with Michelle Dawson’s.
6th INTERNATIONAL MEETING FOR AUTISM RESEARCH [IMFAR]
Michelle Dawson is not only a campaigner for the rights of autistic people. She is also a researcher and will feature at IMFAR this year with one oral and two poster presentations. You can read the abstracts on Michelle’s blog:
THE AUTISM AWARENESS CENTRE
I know very little about Maureen Bennie, except that she is the driving force behind the Autism Awareness Centre,
Canada’s National Provider of ASD Conferences
Leading the Way for Change!
She is also a parent of two autistic children and is running home programmes of Intensive Behavioural Intervention with both of them. I checked out the website because I am going to one of their conferences in the UK this year. I was pleasantly surprised. Maureen reviews a lot of books on the website and has some positive things to say about autism.
How To Understand Autism the Easy Way requires a beginning-to-end read because all of the chapters hinge on the first chapter’s explanation of social and computer thinking. The author does a beautiful job of explaining what it is like to autistic through the concept of social and computer thinking. The writing resonates respect and a positive outlook on this disorder. It is clear that Alex Durig feels a sense of awe about these individuals. The reader will feel this awe and develop a new awareness of autistic perception not explored in other books. [How to Understand Autism - The Easy Way by Alex Durig]
Norm Ledgin successfully puts to rest the negative connotations an Asperger’s diagnosis usually has. He’s devoted his literary energy into seeing the positive aspects of Asperger’s Syndrome. Society generally looks upon people with different or unusual traits as abnormal, but Ledgin sees the Asperger’s traits as great gifts. He uses famous role models to emphasize the point of what these unusual traits have contributed to society and have made us richer for it. [Asperger's and Self-Esteem: Insight and Hope by Norm Ledgin]
Readers can empathize and smile at the joys of life this young man has experienced in his short lifetime. You will realize autism does not have to be a deficit but a different way in which to view the world. [The Mind Tree by Tito Rajarshi Mukhopadhyay ]
Rett Syndrome is unusual amongst autistic spectrum disorders for two reasons
- It is far more common in girls than in boys.
- 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.
A while ago I wrote a book (Learning to Live with High Functioning Autism. Jessica Kingsley Publishers 1999) about autism in which I said,
“The third thing that I have noticed is how diverse the personalities of adults with Autism are. Abrasive, apologetic, sympathetic to others, self centred, shy, confident. Just like the rest of us, with strengths and weaknesses. Each personality emerges unique, often after immense struggles. And, when you read the life stories there is often very little clue in a person’s childhood about the way they will turn out.
One young woman with Autism described two children, identical in every respect. They have the same problems. They inhabit the same environment. But they react in different ways and their conditions are interpreted differently. One is labelled autistic, the other is gifted but odd. In other words, there is no point in trying to pick the winners or match services to projected outcomes. The only way to pick a winner is to back them all. “
I was quite pleased with this passage from my book when I wrote it back in 1998. Now I am not so sure. I thought I was advocating equal rights for all autistics but the justification for this was the questionable premise that this was the only way to discover all the gifted and talented autistics who would benefit society. Once we have identified the “winners” what happens to the “losers” after that?
That thought never occurred to me when I wrote the passage above. I was arguing for services for all autistic children and had not thought really about the situation for autistic adults apart from arguing that,
“any adult services that are put in place need long term planning and adult services do need to be put in place. As I mentioned earlier, parents should not be expected to assume the burden of adult care. And the more independence the adult with Autism can achieve the easier the transition that will have to be made after the parents have died.”
In retrospect this looks quite horrible: glittering prizes for the few and the “burden” of community services for the rest, apart from those who will need even more burdensome insitutional care. That was not my conscious intention. I was writing from a parent’s point of view, a poor put upon parent who was forced to fill the gaps in a creaking system that was failing to provide the services that I wanted to meet my agenda for my child. My agenda at that time was to teach my son how to please other people, fit in at school and stay out of trouble so he could join the priveleged few who made it through the system. It was only much later that I learned to listen to my son. As I pointed out in another book (Asperger Syndrome in Adolescence edited by Liane Holliday Willey, Jessica Kingsley Publishers 2003)
“The best advice that Mattie got was from Dave, a clinical psychologist, who asked him to think about what he wanted. Prior to this Mattie had always been encouraged “ [by me as much as any teacher or other professional] “to meet other people’s demands and expectations. Dave was the first person to give Mattie permission to put his desires before our expectations.”
So, if I am anything to go by, even well intentioned parents who think they respect autistic culture and have some understanding of autism can get it wrong. It is easy to beome entrenched in our thinking when taking up cudgels on behalf of our children. The danger is that we define our ideas in terms of what we are fighting against. But sometimes we need to reflect on and modify our thinking about what we are fighting for.