Think Differently Campaign and Treating Autism

The Independent today published a letter signed by leading members of Treating Autism, [TA] a UK charity which believes that autism is treatable using the biomedical methods championed by Defeat Autism Now!  Their main complaint against the National Autistic Society’s Think Differently Campaign is that it paints too rosy a picture of autism, ignores the suffering of their children and refuses to acknowledge that autism is treatable using the aforementioned biomedical methods. Here is the letter in full, interspersed with my comments

We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet (“Think Differently about Autism”) calling for public understanding of autism, complete with a website of supportive celebs.

Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.

The leaflet does not pretend that autistic people are normal. What is normal about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.” ? The autism model emerging in the United States is just a hypothesis. Nobody disputes the truism that autism results from a combination of genetic and environmental factors. But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature.

What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who “choose not to speak” and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is “normal” and those who believe it is a disability which should be treated.

Actually the leaflet pictures one young adult who “prefers not to speak.” I am certain that the NAS would not have used those words without checking first with the young man in question and his family.

The NAS reflects the diversity of opinion that exists within the world of autism and we have some vigorous debates. But they are conducted with mutual respect by people who continue to work together for the greater good of all autistic people and their families. That is why the NAS has experienced 20 per cent growth this year. Not what you’d expect from an organization “riven with feuding.”

One of our number signed this letter en route to a conference run by the National Autistic Association of America whose speakers include a representative from the US-government National Institute of Health speaking on the part played by the environment in the autism epidemic. Only an ocean but a world away from the patronising claptrap put out by the National Autistic Society of the UK.

This is potentially misleading. Thomas Insel of the NIH is speaking at the NAA conference. But he is not a member of NAA and it is unlikely that he is going there to endorse the NAA opinion that there is an autism epidemic caused by the mercury content of vaccines, which can be cured by chelation.

The  NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change.

Research Autism has been established with NAS support but is independent of the NAS. It seeks to promote evidence based research on the efficacy of interventions for autism. If the US research is not mentioned it is because it does not satisfy Research Autism’s criteria for inclusion.

Autistic people sometimes refer to themselves as coming from another planet and they are not joking. They are made to feel like aliens by the lack of understanding and acceptance that they encounter on a daily basis. If the Think Differently campaign helps to change that, both it and the NAS will have nothing to be ashamed of.

The costs of autism

I am familiar with two studies that make a serious attempt to estimate the costs of autism – one in the USA and one in the UK. These figures look quite alarming: 3.2 million US dollars or 2.4 million UK pounds over a person’s lifetime. The UK figure is used to argue for an increase in our low level of funding for autism research. The US figure is used to defend their significantly higher level of spending. While I support the need for more funding for autism research I have some problems with the way these figures are arrived at and with the way they are used.

These lifetime costs are sometimes used alongside estimates of annual costs to the economy. In the USA this works out at 35 billion dollars. That sounds even more alarming until we remember that

More than 50 million Americans experienced a medically treated injury in 2000, resulting in lifetime costs of $406 billion; $80 billion for medical treatment and $326 billion for lost productivity.

So autism, affecting 2 million people, costs the US economy 35 billion dollars a year. But in a single year, injuries affecting 50 million people  cost the US economy 406 billion dollars. Where are the headlines and congressional commitees on that one?

Regarding the figures, the US study assumes a roughly 50/50 split between severely and mildly affected individuals as defined by their monetary cost to society. The much higher figure for average lifetime costs in the UK may be a reflection of the more generous provision of our welfare state. It is also based on an outdated  75/25 split in favour of severe autism. [3 million UK pounds versus 750,000 UK pounds] Epidemiological evidence suggests that between 15 and 20 per cent of autistic individuals are also mentally retarded. These are the ones who are not only unlikely to work but may also require lifetime care in some sort of group home or supported living arrangement. That is the inverse of the UK assumption. So, on closer examination, maybe the figures are not so alarming after all.

We also have to offset the figures for severe autism with the similar numbers of autistic individuals who may eventually become “indistinguishable  from their peers” at least in respect of their need for services and support. Tony Attwood (slide 13) argued that maybe 20 percent of autistic children move “up” and possibly “off” the spectrum over their lifetime at the NAS International Conference in London in 2005. And recent research on diagnostic stability tends to support him.

attwood

And then there is the nagging question of the CDC enquiry into the

Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment

This found the following lifetime costs.
Table 1

If you add the totals for four children, one each with MR, CP, hearing loss and vision impariment, it is very close to the alleged cost for a single autistic child! Someone is egging the pudding here!

Some of the elements within the figures are open to question. The US figures include 200,000 US dollars for ABA included in medical costs alongside 150,000 US dollars for education. Are these actual or notional figures? How many autistic children get ABA? How many get additional funding for their special educational needs? I have met very few prents who are satisfied with the level of provison for their autistic child. 

1.8 million US dollars is almost equally divided between indirect societal costs attributable to the autistic person and  indirect societal costs attributable their carers. This seems to be almost entirely based upon loss of earnings and lost productivity.  But where are the measures that account for the positive impact of autism on the economy in terms of employing such a vast array of therapists and stimulating so much research into the human brain with unquantifiable impact on the whole area of neurological reasearch? I could also find no indication in either study that that they had attempted to factor in the positive contribution that autistic people might make to the economy.

Yes we do need more money for autism reasearch. But we also need more money for autism services. Presenting autism as a drain on the economy to frighten governments into funding more research into possible prevention and cure does nothing to help existing autistics and their families find support services in the here and now. And if the lifetime costs are so high where is this money going? Why are autistic people and their families so often left leading miserable lives?

If ABA and education do cost a combined 350,000 US dollars for every autistic child why not just write a cheque on the day of diagnosis? Let us see if the parents can spend it more wisely and more productively than the state. At the very least there would be a saving on lawyers fees (on all sides) for contested IEP meetings. And if it costs society 1.8 million US dollars in lost productivity for autistics and their carers just put half a million dollars in trust for every autistic child on the day of their diagnosis. At 5% interest that should yield around 1 million US dollars over 15 years. If we are going to spend so much money on autism, let us spend it effectively.

FOOTNOTE

Joseph blogged the US study a year ago. Please read “Debunking the costs of Autism.”

Autism Parents and Celebrity Endorsements

Now that the Jenny McCarthy bandwagon appears to be slowing down it is as well to remember that lots of parents are writing intelligent, heart warming and thought provoking accounts of their experience in raising a child with autism. Lacking McCarthy’s dubious claims to fame and fortune, not many of them get the chance to publish a book or be courted by Oprah or People Magazine. These parents are all intervening to help their children. But unlike McCarthy they do not subscribe to the view that,

“……as long as autism is considered a mental disorder or genetic disorder, then the list of referral specialists is quite predictable: neurologists, geneticists, behavioral pediatrician, psychiatrist, and therapist for mom, since most of the issues are her fault anyway.  But, you know what, despite all the evaluations and platitudes, the child somehow improves only minimally, if at all.Autism, as I see it, steals the soul from the child; then, if allowed, relentlessly sucks life’s marrow out of the family members one by one…….”

Nice, eh? A typical rant from one of mercury malicia? Not exactly. It is part of the forward to McCarthy’s book. The author is Jerry Kartzinel MD, the medical director of paediatric services at Andrew Wakefield’s Thoughtful House Clinic in Austin, Texas. Their website is down at the moment because it has exceeded its bandwidth. I would like to think their server has been overwhelmed with angry parents seeking to complain about Kartzinel’s dehumanizing comments about autism. But it is more likely that the Jerry and Jenny media roadshow has sent them a whole new raft of hopefuls looking for a magic cure.  There is a lively discussion about Kartzinel’s remarks over on Left Brain/Right Brain.

But back to autism parents.

As well as the members of the autism hub there are lots of others out there. Thanks to McCarthy for bringing these to my attention.

The Quirk Factor: Resistance is Futile

Mommyhood – the Adventures of Kim and Alex 

And here is another parent blog that is well worth reading and seems to be a McCarthy free zone. :-)

Mother of Shrek

Celebrity Endorsements

If we go beyond the mutual backslapping of Kartzinel and McCarthy, it is true that there are so many books, methods and programmes out there that we often rely on other people’s endorsements to guide our choices. If an acknowledged expert in the field is quoted on the dust jacket or writes a favourable review it can only help sales. We also have autistic celebrities, who may not be autism experts but speak with some authority because they have written and spoken about their autism in ways that connect to the experience of others on the autistic spectrum and their families.

Two of the most famous examples are Temple Grandin and Donna Williams. Sharon has blogged about a recent lecture in Belfast by Donna Williams. Sharon noted all her points of agreement with Donna Williams.

As the lecture progressed however, I was noting more things that I didn’t agree with. First she spoke about cranial sacral therapy, saying it benefited her, which I don’t doubt. She suggested it could benefit other autistic people too, and again, maybe it could. But as a technique, there’s no evidence of any effectiveness and the claims made sound rather like, oh what’s that word…quackery.She also mentioned all sorts of medical problems, and again either stated or implied (I can’t remember) that these are common place in autistic people. She mentioned her own issues; salicylate intolerance, immune deficiency, gluten and dairy intolerance. She recommended that anyone thinking that their children may be affected by such issues, should investigate GF/CF diets, low sugar and low salicylate diets. She referred to the ‘leaky gut’ theory, stating that for many autistic people, gluten and casein can act like opiates. In fact, when one woman asked for advice on her son’s habit of head banging, Donna again mentioned this, saying this is sometimes a symptom of what she termed ‘brain fog’, that is, undigested enzymes crossing the blood-brain barrier.What was missing from all these discussions of medical issues, both in the main lecture and while answering questions from the audience later, was any mention of doctors or dietitians. Donna mentioned naturopaths, chiropractors, reflexologists and osteopaths. These are not practitioners of evidence based therapies.

Sharon wrote another post about the sponsors of Donna Williams’ lecture – P2P Autism – who are trying to spread the DAN! message in Ireland. Donna Williams appeared in the comments section to defend her position and  Sharon has another post in which she deals with all Donna’s points.

The last time I heard Temple Grandin speak she ended her talk with an endorsement for the ARI website.  The website does contain an interesting FAQ by Temple Grandin about sensory sensitivities and aspects of autistic behaviour. It also contains a guide for new parents co-authored by Temple Grandin, Bernard Rimland, Stephen M. Edelson and James B. Adams. The only significant point of difference between them is that Temple Grandin supports the selective use of psychiatric medicines in older children and adults.

The various topics covered in this overview paper for parents of young autistic children represent, for the most part, a consensus of the views, based on research and personal experience, of all four authors.  However, the authors differ in their opinions on the role of psychoactive drugs should play.  We will present you with the conflicting opinions, so you can decide for yourself.

Grandin has a relatively accepting position on the use of psychiatric medications in autistic children.  She feels  that it is worthwhile to consider drugs as a viable and useful treatment.  Rimland and Edelson, on the other hand, are strongly opposed to the use of drugs except as a possible last resort, etc.  – They feel the risks are great and consistently outweigh the benefits.  Adams has an intermediate view. 

But regarding the DAN! protocol (safe and innovative ) and ABA (most effective ) they were all agreed. On the question of vaccines they were not fully committed.

The possible causative role of vaccinations, many of which were added to the vaccination schedule in the 1980’s, is a matter of considerable controversy at present.

That was then.  ARI is firmly committed to the autism/vaccine hypothesis now.

Autism is a complex disorder with many contributing factors. While there are many theories as to the cause of the increase, ARI believes environmental factors—including unprecedented exposure to toxic substances and over-vaccination of infants and young children—are the key factors triggering this devastating epidemic. Emerging research supports this fact, making it clear that autism is a whole-body illness triggering a biological brain disorder and ARI continues investigating various possible causal factors.

Kenneth Bock fully endorses the vaccine hypothesis, as he makes clear on his website. He is also a big wheel within ARI/DAN! who speaks at international conferences and is president of the American College for Advancement in Medicine. ACAM is actually a trade organization for chelationists and other ‘alternative’ health practitioners. Bock has written a book outlining his views which received this glowing testimonial

“An easy-to-read commonsense guide to beneficial biomedical treatments such as diets and supplements. Dr. Bock clearly explains the different options and provides case histories of treatment successes.”
–Temple Grandin, author of Thinking in Pictures

Both Donna Williams and Temple Grandin have added greatly to our understanding of autism from their autobiographical accounts and their public lectures. But their support for the idea that alternative medical interventions can help  some childen and adults gives credibility to the pseudoscience that informs these interventions, especially in the eyes of parents. I think it is time to challenge them on this. Thank you to Sharon for making an excellent start.

We have to move away from faux-science. It is ironic that the alties denigration of the core values of real science is only matched by their desire to take on the peripheral trappings of science. This ‘wannabe’ desire for respectability, while denigrating actual, existing, respectable science can confuse non-scientists. This may be their intention. It seems to have worked with  the Autism Society of America. CEO Leo Grossman has recently endorsed a book by Bryan Jepson, one of Jerry Kartzinel’s partners in crime at Thoughtful House.

Lee Grossman, parent of an autistic child; President and CEO, Autism Society of America
“The new PDR of autism for parents and physicians. An important book that everyone dealing with autism must own.”

There is no science worthy of the name to support the biomedical, curebie position on autism. A combination of clever PR and behind the scenes politicking has elevated the biomed lobby to a position beyond their station. It is time to prick the bubble.

Landmark parental choice ruling over autistic boy

 This comes from the Foundation f0r People with Learning Disabilities website. Thanks to Norman from the NAS for sending me the link. In the UK we often get inter-agency disputes over funding issues. Health, education and social services are all funded out of the public purse but they guard their budgets ferociously. I recall a case involving a former pupil of mine in which the health authority was resisting a three way split with education and social services to cover the cost of a residential placement. They insisted that they would only pay for health care costs. The other agencies were glad to agree when it emerged that health care accounted for the majority of the costs!

These disputes are particularly galling when social services and education argue over funding as both are departments of the same local government body. This may be changing as child and family services and local education authorities are increasingly merging with each other. Meanwhile judgements like this set a welcome precedent for parents who argue their case for making the best use of the public purse free from inter-departmental rivalry and cost cutting.

The mother of an autistic boy with special educational needs won a groundbreaking ruling in the High Court today which could give greater weight to parental choice of schools for disabled children.

Solicitors for the family welcomed the ruling, saying it would provide “a more holistic approach” to children’s services.

The case arose after the London borough of Lewisham, the local education authority (LEA), identified a day special school as suitable to meet the needs of “O”.

O, who cannot be named, has complex and severe learning difficulties.

But his mother wanted the 12-year-old to board at a special school maintained by another LEA.

Her lawyers challenged the stance taken by Lewisham education chiefs before a Special Educational Needs and Disciplinary Tribunal(SENDIST).

They asked that O’s statement of special educational needs be amended to reflect her preference.

But the tribunal decided in February this year that the school chosen by Lewisham, where O became a pupil in September 2006, could meet his educational needs and, essentially, that the more expensive residential place could not be justified.

Today Andrew Nicol QC, sitting as a deputy High Court judge, allowed the mother’s appeal and said the tribunal had erred in law over the question of cost.

The tribunal found that the difference between the day school and boarding school was around £20,000 a year.

It said that, although the residential school chosen by the mother was a very good school, it would be “an inefficient use of resources” under the Education Act 1996.

David Wolfe, appearing for the mother’s solicitors, argued that Lewisham social services was providing £16,588 worth of respite care for the mother while O remained at day school.

That would not have to be provided if O went to boarding school, and the real difference in costs to Lewisham would be less than £3,500 a year.

Mark Roscoe, for Lewisham, argued that the Education Act did not allow the tribunal to take account of the social services expenditure as it was not an education department cost.

But today Judge Nicol disagreed and held that it was a relevant cost under Section 9 of the Act and amounted to “public expenditure” which could be taken into account.

Allowing the mother’s appeal, the judge urged that the tribunal should consider the case afresh as soon as possible.

Later the family’s solicitor, Emily Gent, of the firm Maxwell Gillott, said the ruling was significant because parental preference has generally been denied in SENDIST appeals “where a tribunal accepts that a cheaper adequate alternative that meets educational need is available – even if there are other costs to public bodies which could be saved if the more expensive school place is chosen”.

Ms Gent said: “The tribunal, and local education authorities, can now take into account money saved from other sources that would be used to meet non-educational needs.

“This encourages a holistic approach to provision of services to children in line with the Every Child Matters framework constructed after the Climbie inquiry.”

Release Date 11/09/2007

Source Press Association

Who is to blame for our son’s death?

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2007/07/30/hasper130.xml&page=1

This story is so sad and so avoidable. My son is not so different from Tim Whattler. He is doing OK at the moment.  But this was not always the case. We are not so different from Tim’s parents. We fought similar battles on our son’s behalf. Often we lost. We couldn’t understand it either.

We are lucky. Our son has survived. But it should not be about luck. Tim’s death is a waste; such a loss. It is not a tragedy. It is a crime, though I doubt there will ever be a guilty verdict.

Autism Omnibus – a disaster for the families

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

  1. Thimerosal containing vaccines (TCVs),
  2. MMR,
  3. 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?

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.

Biomedical Interventions

The key features of the ‘biomedical movement’ are that it is parent-driven and that parental concerns are dismissed by mainstream professionals. Those professionals who do take up the parents’ case often gain iconic status among parents. They are ignored by the mainstream scientific community at first, but expect to be vindicated eventually.

It is parents who have been instrumental in changing attitudes to autism over the last 50 years. Autism is not caused by bad parenting, is not a form of mental illness and our children are not ineducable. We won these battles and we often find ourselves fighting similar battles today with professionals, who think they know autism but do not know our children.

This explains why so many of us are prepared to give the benefit of the doubt to parents who support biomedical interventions. But it is not a coherent movement.

The ‘Mercury Moms’ argue that their child’s autistic are not ‘real’ autism but are the result of an environmental insult whose effects are reversible; they have been poisoned by the mercury content of the vaccines, routinely administered in the USA.

IMMUNE SYSTEM

Others accept that their child is autistic, but argue that whatever caused their child’s genetic predisposition to autism has given them a weakened immune system that cannot cope with environmental insults, such as vaccines, infections or allergies.

There are those that view autism as a metabolic disorder that will be alleviated by special diets and/or vitamin supplements. Then there are attempts to synthesize all these diverse and sometimes contradictory ideas into an overarching theory.

A number of features of the biomedical movement also persuade me that it is not comparable to the autism movement as a whole.

Those of us in the wider autism movement tend to be open to new ideas but sceptical as well. People in the biomedical camp often seem to have made up their minds and are just looking for the evidence to back up their opinions.

There is debate and differences are freely discussed at our conferences and in our journals. Biomedical conferences seem less open to criticism. Every point of view is equally valid except the one that suggests they might be wrong.

Biomedical research is funded by parent organizations. When independent research contradicts them they claim that it is tainted by government influence or the drug companies.

Our pioneers made sacrifices to prove their point. Many biomedical experts profit by selling their own therapies to the grateful parents whose prejudices are confirmed by their research. To his credit, Paul Shattock, Director of the Autism Research Unit, has not pursued any commercial advantage from his work on biomedical causes of autism.

But let’s not dismiss the whole shebang as being about gullible parents who are ripped off by snake oil merchants. Some children do regress after an apparently normal early life. Autistic people do experience atypical responses to all sorts of environmental inputs, including medications. Autistic children do contract painful gut disorders. Some autistic people do benefit from restricted diets.

REAL SYMPTOMS

The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Andrew Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment.

The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.

Anyone with an autism diagnosis should be given a full medical work up in case there any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions. To subject children to treatment of questionable benefit and unquantifiable risk, because of a hypothetical possibility that their autism might have some connection with a biomedical disorder, is unacceptable. As such, chelation should be roundly condemned as a therapeutic intervention.

Autism can be a devastating blow to individuals and their families. But it can be positive as well. The NAS approach is all about maximizing the positives, minimizing the negatives and standing up for the welfare of autistic individuals, above all else. Most of the time we can stand together with parents on this. But, when it does come to a choice between the wishes of some parents and the welfare of autistic people we must have the courage to put autistic people first.

Mike Stanton – Communication Vol 39, No 3, pp36 – 37