Action For Autism

2006-02-23T12:25:00.000Z

Action For Autism has moved to mikestanton.wordpress.com

If you have come here to follow up on the debate about biomedical interventions published in Communication my original articles are archived here on my new web site.

To read other autism blogs by people who either share my respect for autistic people or are autistic themselves please visit the Autism Hub

For serious discussions about peer reviewed scientific research relating to autism visit Autism Science Discussion

An MMR Rant

2006-02-07T22:06:00.000Z

The Daily Mail (6 February)is still pushing the MMR/Autism myth. The Mail's last attempt to revive its anti-MMR campaign failed miserably when the hapless Melanie Phillips attempted to rubbish the Cochrane Review which concluded that there was no credible evidence for a link between MMR vaccine and autism. IMHO she came off worse in a subsequent exchange with Ben Goldacre whose Bad Science column is the first thing I turn to in the Guardian. Mike Fitzpatrick provides an excellent summary at Spiked Online.

This time round they decided they needed a proper scientist and found Dr Peter Fletcher. According to the Mail, "In the late Seventies, Dr Fletcher served as Chief Scientific Officer at the DoH and Medical Assessor to the Committee on Safety of Medicines, meaning he was responsible for deciding if new vaccines were safe." In 2001 he was a referee for Andrew Wakefield's paper "Through A Glass Darkly," which suggested that the licence for the MMR vaccine had been granted prematurely and serious concerns about its safety had been ignored. Dr Fletcher appeared to concur with this view but still told the BBC that
Dr Wakefield's research paper did not contain any extra evidence to alarm parents, but that this would be the inevitable effect. He said: "Parents should definitely continue to have their children immunised against these illnesses."

Dr Fletcher is made of sterner scientific stuff than Melanie Phillips, or myself for that matter. But he is only one scientist. There are many more who have opposed his support for Andrew Wakefield. See for example this article from the Health Protection Agency. The Department of Health was equally adament in its dismissal of Wakefield's claims.

It is pertinent that Dr Fletcher is an expert witness on behalf of parents of autistic children pursuing claims for compensation against manufacturers of the MMR vaccine. In common with Kenneth Aitken PhD, another expert witness on this subject, he seems to have sacrificed his scientific objectivity in favour of a subjective identification with the concerns of the parents.

While it is easy to dismiss rogue scientists and in some cases point to a financial incentive for their roguery, the fact remains that there are a significant number of scientific and medical experts who are sufficiently persuaded by their contact with disaffected parents of autistic children to become passionate campaigners and abandon their previous commitment to dispassionate research.

Having been through the mill myself, I feel that parents are right to feel disaffected. We are fobbed off with inadequate provision. We are patronised. We are insulted. And, surprise, surprise, this makes us passionate in advocating for our children. So when we find a doctor or a scientist who actually sympathises with us we tend to give them fierce and undying loyalty. Professionals who are seduced by this heady mixture can be forgiven for losing their objectivity.

But when you sacrifice your objectivity you cease to be of any use to the parents you seek to serve. You may find yourself guilty by association with scientific illiterates and no longer a credible supporter or witness for the parents whose cause you have adopted as your own.

So I wonder what Dr. Fletcher makes of previous Mail columns by Ms Philips in which she asserts that evolution is a "flawed theory" while defending faith schools which teach Intelligent (sic) Design or others where she attacks theories of global warming as "global fraud." Come on, Peter! Are you really happy with the company you are keeping?

My final message is for the government.
Have you ever considered why parents turn to bad science? It is because you do so little for us and our children. Government responses to autism are so bad that bad science like Andy Wakefield's theories and snake oil remedies from DAN! seem preferable to some parents. You could make this whole MMR debate irrelevant if you spent a lot more time and money on positive autism specific policies and less defending the present indefensible status quo and producing ill thought out legislation that adds to our difficulties.

Action Against Artism?

2006-01-25T00:02:00.000Z

There is a very interesting and enjoyable discussion about art and autism on Kevin Leitch's Left Brain/Right Brain blog.After reading that I discovered this item from The Scotsman courtesy of the NAS press office. (One of the perks of being a member of the NAS Council is that I get a daily list of autism related news stories.)

DOES AUTISM MAKE YOU A BETTER ARTIST?

AMONG those given MBEs in this year's New Year Honours was the artist Stephen Wiltshire. A big success, his immensely detailed cityscapes fly off gallery walls. He is also autistic. But are the two connected?

Ioan James, a professor of geometry at Oxford, is writing a book investigating whether Andy Warhol, among other influential figures in the arts, mathematics and history, suffered from Asperger's Syndrome, a mild form of autism. His use of grid patterns, paralysing shyness and tendency to repetitious behaviour may be clues that he did. Michael Fitzgerald's The Genesis of Artistic Creativity: Asperger's Syndrome and the Arts suggests it could also be added to Van Gogh's list of ailments. Likewise, LS Lowry. Seems that Scottish painter Peter Howson, who realised as an adult he was an Asperger's sufferer, is in good company.

James has said characteristics associated with creativity - "perseverance, perfectionism, disregard for social conventions and unconcern about the opinions of others" - are remarkably like those associated with Asperger's."

The references to "suffering from Asperger's" and AS being "a mild form of autism" do grate a little. But this is a piece of journalism so I will pass over these inaccuracies in order to deal with a much more serious misrepresentation.

In Edinburgh, meanwhile, the work of three remarkable young artists is at the Atticsalt Gallery, 50 Thistle Street North East Lane, until next Saturday, to raise funds for the Autism Treatment Trust. Lloyd Allanson, 10, Danielle McLernon, 14 and Louis Larochelle, 9, all suffer from autism to different degrees and all have produced artwork with an unusual degree of attentiveness and maturity.

I am not surprised that Lloyd's paintings show an unusual degree of maturity. After all they were painted by his mother, albeit based upon his drawings, done when he was five.

Exhibition organiser Lorene Amet, Lloyd's mother, says: "A lot of people have autism. Are they more talented than others? I don't think you can be sure. I think their work stands out because it's different, they perceive the world differently."

Lloyd's mother wants to stop people like Lloyd from perceiving the world differently. She is a DAN! practitioner and practises on her son. The exhibition is a fundraiser for a new charity set up by Action Against Autism. All the proceeds from this exhibition are going to fund a treatment centre offering biomedical interventions. Lorene Amet is chair of the Autism Treatment Trust and a director of Action Against Autism.

I expect she will be quick to point out the mistake by the Scotsman in attributing her paintings to her son and look forward to reading a correction in the Scotsman.

I do not expect the members of Action Against Autism to question the morality of taking the artistic endeavours of autistic children and using them to raise money to "cure" the altered perceptions that were responsible for artworks that show "an unusual degree of attentiveness and maturity."

The Pressure on Parents

2006-01-15T22:50:00.000Z

Although I am harsh on the purveyors of false hopes who prey upon the fears of parents of autistic children it is important to remember that those fears are real. They may not be justified. They may be fuelled by the media and unscrupulous researchers and clinicians. But they are real nonetheless and parents need help in dealing with them.

I offer this excerpt from a book I wrote 6 years ago while recovering from my own mental breakdown as a way into analysing parental responses. I welcome any better ideas.

A. Parental responses - the worrier

The worrier parent cannot get over their guilt. They want to know why their child is autistic. Was it their fault? Is there a cure or therapy that can help their child that they are not trying? Whenever the media trumpets another “breakthrough” in the treatment of Autism it adds to the pressure.

They come across the wealth of anecdotal evidence that diets, vitamins and different drugs can help some children with some aspects of their condition. Of course, friends and relatives are always hearing about miracle cures and interventions. These are usually very expensive and only obtainable on the other side of the globe. So, why aren’t you mortgaging your other children’s college fund and your pension to cure your child? Don’t you love him enough? Or perhaps he is not really that autistic? Grrrr!

If you are the parent of a child with severe eating or sleeping problems, destructive or self-injurious behaviours, tantrums or prolonged periods of distress, and you are getting little or no professional support or advice that actually works for your child then you will try anything. Without serious research into the worthwhile interventions they have to bid for credibility alongside the shysters and hucksters promoting their snake oil remedies.

The National Autistic Society has published a booklet which describes over 40 different approaches; some are dietary, medical or educational and some are just plain weird. Most are worthy of attention (NAS 1997). But there are very few people “on the ground” to whom parents can turn for guidance. In the UK parents who approach their local health providers for “alternative” therapies are often viewed as cranks. In the USA these treatments are more widely available if your health insurance is prepared to pay. So the worried parent has to face the prospect of confronting an unsympathetic medical establishment or living with the guilt that they are not doing enough for their child. This sort of dilemma can lead to passivity, resentment and bitterness directed at more assertive parents who should be your natural allies, thus increasing your isolation.

B. Parental responses - the warrior

The Warrior represents the other side of the coin. They are going to get the best there is for their autistic child. They have their rights and if something is not done someone is going to pay. There is nothing wrong with trying to get the best there is for your child so long as you do not lose your way. My own trajectory from worrier to warrior was fuelled by guilt at not being assertive enough and then overcompensating by taking up a completely adversarial position. With hindsight it sometimes appears that I was less concerned with what was right for my son than I was with the desire to get the faceless bureaucrat whom I blamed for all our grief.

C. Breakdown and Conflict

It is easy to see how this can happen. The parents notice something about their child. Their fears are dismissed. They read an article about Autism and recognize their child in the article. They research the subject. They pester the authorities. They become a problem to be dealt with while the child’s needs are ignored...

D. Partnership

Both warriors and worriers can become overprotective towards their children. Because of this the children may learn to define themselves by their condition. One example might be the child with a learning disability who could manage to achieve a reasonable level of independence in adult life. But if given a sick role to play they may learn to play it to perfection and always be dependent on others for things they ought to be capable of themselves.

It is easy to see how this could happen. The parent is told their child has a problem but receives very little support in coping with the news. For some the child becomes their permanent baby that they will love and look after for ever and ever. Such parents are very loving but can impede a child’s progress by doing everything for them and spoiling them completely.

These children have a genuine difficulty and parents who want was is best for them. The parents just need some guidance and reassurance. No professional is allowed to be alone in a room with children until they have completed their training. Parents of children with special needs are expected to get by on their own with no training. As primary caregivers we ought to feature prominently in the in-service training budget of every agency that deals with autism. Because if we cannot cope you are going to have to train someone else to replace us and pay them as well.

Often aspects of both warrior and worrier are present in the same person at the same time. We are used to living with contradictory ideas. It is only when the contradictions become too acute that breakdown occurs and many parents do experience breakdowns.

So those dealing with parents need to be aware that we have special needs as well. Health and education officials ought to develop a ‘bedside manner’ and be gentle and supportive. Above all what we need is honesty. If the provision is not there because of cuts in government expenditure and the authority cannot afford what is best for my son, tell me! Do not pretend that you can meet his needs within existing provision when it is patently obvious that you cannot.

Parents do want a partnership with professional agencies to help our children. If the system needs a shake up we can do the shaking. We are not constrained by professional etiquette. We can court publicity in ways that might be inappropriate for public servants and state employees. Both worrier and warrior can be positive if we worry about the things that matter and go to war against the right targets. We can be your friends in low places, humbling the mighty.

So, to all who have dealings with the children with Autism I make this appeal.

Take the parents into your confidence, as we take you into ours by entrusting you with our children’s future. Do not patronise us, dismiss us or attempt to pigeonhole us. We may not always know what is best for our children. But, rest assured, we always want was is best for them.

Taken from "Learning to Live with High Functioning Autism" by Mike Stanton.

Going Through the Motions

2006-01-12T17:10:00.000Z

What are you to do if you operate on the fringes of evidence based treatments for autism? You feel you are at the cutting edge but the medical establishment do not support your theories and treatment protocols? Well, you could go in for double blind placebo controlled studies and publish in peer reviewed journals. After all, one of the biggest complaints from proponents of biomedical interventions is that these sort of studies have not been carried out properly for the vaccines they blame for their alleged autism epidemic.

And you do not have to believe their claims about vaccines in order to sympathize with objections to the routine prescribing of powerful psychiatric drugs to autistics of all ages. Even if you question the evidence, nobody was ever harmed by dropping dairy or gluten products from their diet. But where is the evidence for Ritalin, SSRIs, Risperidone etc? We know they can have severe side-effects and are not licenced for the treatment of autism. APANA or Autistic People Against Neuroleptic Abuse has long campaigned against the misuse of such drugs as a substitute for offering proper support to autistics.

So it is surprising that mega doses of vitamins, chelating agents, anti fungal treatments etc. are embraced so enthusiastically by those who would rightly condemn the drug companies if they introduced new treatments on the basis of anecdotal evidence, individual case studies and small scale trials. And then they are surprised when their evidence is rejected. Action Against Autism(AAA) should have been chastened by their recent experience at the Cross Party Group on Autistic Spectrum Disorder

"Mr Welsh (Chairmen of AAA) noted that 50% of people with autism have inflammatory bowel disorder and questioned why this has not been brought forward.

Dr McClure stated that there are concerns over the presentations children make and that more evidence is needed. The SIGN group has followed a process and procured the evidence it has. It may be that studies mentioned by Mr Welsh do not meet the quality of evidence that the group is working with. He added that he would be happy if Mr Welsh investigated this.

Mr Welsh stated that at a recent conference scientists from the USA and France were asked if autism was treatable to which they replied ‘yes’. Mr Welsh asked for Dr McClure’s opinion.

Dr McClure replied that no-one in the SIGN group would inhibit research which would find answers to help children. Part of the process is about safety on the basis of evidence. He stated that in his work he, personally, prescribes to the principle of ‘do no harm’. Dr McClure remarked that the problem with the studies to which Mr Welsh refers is that they do not meet the quality of evidence threshold. That is not to say that he is not interested in these inquiries but he would like there to be more research carried out properly."

But never mind that your research does not meet the quality of evidence threshold. Never mind about peer review. Why not go for parliamentary review instead? Murdo FraserMSP, one of two parliamentary advisors to Action for Autism has proposed the following motion.

S2M-3487 Murdo Fraser: Autism-Specific Medical Treatment Centre—That the Parliament congratulates the charity, Action Against Autism, for bringing to Scotland, at the Royal College of Physicians, six of the world’s leading medical doctors practising in the field of autism, who articulated to delegates from over ten countries that autism can be treated by the introduction of safe and proven interventions for the often painful and distressing underlying medical conditions which courageous children with autism are experiencing, and believes that the Scottish Executive should give consideration to the establishment of an Autism-Specific Medical Treatment Centre in Scotland to address the needs of the 3,400 primary school children and others who have been identified as suffering from this devastating condition. R

Who are these "leading medical doctors practising in the field of autism?"

Dr Neubrander
Dr Nataf
Dr Skorupka
Dr Aitken
Dr McCandless
Dr Haley

I suppose 4 medical doctors out of 6 is not bad. But "leading?" Well they are not on my A List.

Another MSP has proposed a similar motion asking the Scottish Parliament to "recognize the expertise" and endorse "credible evidence" that has no credibility amongst mainstream scientists and doctors.

S2M-3422# Carolyn Leckie: Treating Autism—That the Parliament congratulates Action Against Autism for organising the pioneering conference, "Autism is Treatable", which took place on 15 October 2005; recognises the expertise demonstrated by the international scientists and medical professionals who led most sessions, especially since their work has been developed within a climate of hostility, and believes that the credible evidence of varying levels of recovery from the characteristics of autism in medically-treated US children should not be dismissed and that further efforts to explore the bio-medical model of autism in Scotland deserve the support of the Scottish Executive and the medical establishment.

Autism does not have to be a devastating condition. There is plenty that would help.

Early identification and diagnosis
Support and training for parents in how to raise their autistic child
Safe and supportive school environments free from the bullies who tried to wreck my son's life
An end to the isolation of adults who do not fit the current service models of learning disability and mental illness
A benefits system that recognized autism
Support for housing and employment
Care for the autistic elderly

It is lack of these essentials that devastates lives and we need Action FOR Autism in order to get them.

Beyond Our Ken

2005-12-22T01:03:00.000Z

Ken Aitken is a clinical psychologist who co-authored a text book on autism. (Trevarthen et al. 1996). The book acknowledges that rubella in pregnant women is a cause of autism but notes that, “greater awareness of the disorder and widespread inoculation have virtually eradicated rubella as a significant cause of autism.” (page 91)

Five years later Aitken appeared as an expert witness before an enquiry into the safety of MMR vaccine called by the Scottish parliament. But instead of supporting a vaccine that had helped to eliminate “a significant cause of autism” he supported the connection between the MMR vaccine and autism. He specifically rejected the suggestion that mercury might be to blame in the UK because, compared to the USA, there are negligible amounts of mercury in our vaccines. (Aitken 2001)

So, when Aitken addressed the Treating Autism Conference in Edinburgh, held on 14 - 15 October 2005 I was surprised to see a slide attacking mercury in his presentation. (Aitken 2005) Has the amount of mercury in our vaccines suddenly increased? Is Aitken a mercury convert because the case against MMR has collapsed? Or was he playing to the gallery because he knew that his audience was sympathetic to the mercury hypothesis?

Whatever the reason, his present position is in marked contrast to the views expressed in his book. Then he argued that, “It now seems certain that the brains of person’s who became autistic in their early childhood already had microscopic faults in their development in early intra-uterine life, probably expressed among cells of the early embryo, in the first month.” (page 80)

Now he argues that
There is a dramatic increase in autism that is caused by new forms of autism that occur in normally developing children who regress after an environmental insult in early childhood.
Regressive autism now dwarfs other forms of autism.

Is there an increase in numbers?
More and more people are being diagnosed. But as early as 1979 the Camberwell Study suggested that autism was far more prevalent than people had previously thought. It found rates around 20 in 10000 in children with learning difficulties. (Wing and Gould 1979). This is identical to the prevalence rate in California that is cited as evidence for an “autism epidemic” In the 1990s.

“The cumulative prevalence of autism in California increased from 7.5 per 10,000 for the sample 1983-85 birth cohort to 20.2 per 10,000 for the 1993-95 birth cohort, an increase of 269 percent.” (CDDC 2003)

Scotland is the one part of the United Kingdom where there is a system in place for recording all known cases of autism. Aitken acknowledges that if we accept official estimates of a prevalence rate of 60 in 10000 only 44% of cases are diagnosed. (PHIS 1991) So what is going on? A diagnostic rate of 26 in 10000 in Scotland is evidence of under diagnosis. A diagnostic rate of 20 in 10000 in California is evidence of an epidemic.

Is there an increase in regressive autism?

Aitken believes that cases of regressive autism have “grown to dwarf those with more ‘typical’ presentations.” Published research shows that the proportion of cases of regressive autism have not changed. (Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. (page 394))
Aitken knows this because he cites the same paper as evidence of a link between bowel problems and regressive autism.

“…bowel problems were reported more frequently in children with regression than in those without, 31 of 118 (26%) and 49 of 351 (14%) respectively (P = 0.002).”

Though it would have been more honest to quote the whole paragraph:

“Although neither bowel problems nor regression was related to MMR vaccination, bowel problems were reported more frequently in children with regression than in those without, 31 of 118 (26%) and 49 of 351(14%), respectively (P = 0.002). This relationship between bowel problems and regression did not significantly vary by type of bowel problem (P = 0.35).
For the 31 children with both bowel symptoms and regression, there was also no association with MMR vaccination (P = 0.20) and no association with year of
birth (1.01, 0.92 to 1.11; P = 0.79).”
Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. (page 395)

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)

So, Aitken has taken research that contradicts his previous position on the connection between MMR, bowel problems and regressive autism and selectively quoted from it to support his view that there is a connection between bowel problems and regressive autism, while ignoring the authors’ qualifying remarks about the reliability of parental memories concerning regression. There’s more. Aitken misrepresents a pilot study for a screening checklist as if it were an authoritative measure of autism incidence among 18 month old children. (Baird G, Charman T, Baron-Cohen S, Swettenham J, Wheelwright S, Drew A 2000)

This study successfully predicted autism in 10 subjects out of 16,235 children but failed to identify a further 40 autistic children. Finding 6 in 10000 out of an actual incidence of 30 in 10000 in a particular birth cohort does not prove that the other children are victims of regression. This was a just pilot study for a screening test, not a full scale case finding exercise using the latest diagnostic techniques. Aitken uses it to support his thesis that regressive autism dwarfs traditional autism. What utter nonsense!

These are just a few of the problems I have with Aitken’s presentation. Another feature of his theory is that if there is a new form of autism there has to be a really low rate of autism in populations born prior to the alleged autism epidemic. Aitken uses these sources as proof.

Burd and colleagues in North Dakota estimated 3.26 per 10,000 in those born between1967 and 1983 (Burd, Fisher & Kerbeshian 1987; Burd, Kerbeshian, Klug &McCulloch 2000). In Sweden, Nylander and Gillberg (2001) found a prevalence rate of 2.7 per 10,000, screening previously
undiagnosed adult psychiatric outpatients.

The problem is that Burd (1987) was using DSM III criteria that were highly restrictive compared to the present DSM IV(R) criteria. There is an interesting discussion about diagnostic criteria, autism epidemics and the perils of comparing prevalence rates over time that Aitken ought to read (Medscape 2005)

The second study by Burd et al. was actually a follow up to assess the methodology used in the original study and using the same methodology the authors found another autistic individual whom they had missed in 1987. This was not a study to assess the prevalence of autism in North Dakota in 2000.

The study by Nylander and Gillberg (2001) actually found

“at least 19 patients in this population (1.4%) had a definite ASD. Seventeen of the ASD patients had been previously diagnosed with other psychiatric disorders, most frequently schizophrenia (n=5). Of patients attending a treatment centre for severe psychiatric disabilities (n=499), 3.2% had an ASD.”

So where did Aitken find his figure of 2.7 per 10,000? Perhaps he reads the British Medical Journal. Mark Blaxhill, a board member of Safe Minds, the acronym for the snappily named Sensible Action For Ending Mercury-Induced Neurological Disorders. Blaxhill wrote to the BMJ citing these same three references as proof that there was no “hidden horde” of previously undiagnosed adults.(Blaxhill 2002) Has Aitken read any of the studies he cites or does he just accept the citations given to him by the “mercury moms” and their supporters?

REFERENCES

Aitken 2001 http://www.show.scot.nhs.uk/mmrexpertgroup/Aitken-rep.htm

Aitken 2005 http://www.actagainstautism.org.uk/presentations/14th/aitken.pdf

Baird G, Charman T, Baron-Cohen S, Swettenham J, Wheelwright S, Drew A (2000) A screening instrument for autism at 18 months of age: a 6-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 2000 Jun, 39(6):694-702

Blaxhill 2002) Letter to the editor. British Medical Journal Volume 324 2 February 2002 page 296

Burd L. Fisher W. Kerbeshian J. (1987) A prevalence study of pervasive developmental disorders in North Dakota. Journal of American Academy of Child and Adolescent Psychiatry, 1987, Vol. 26(5), pp. 700-703

Burd L, Kerbeshian J, Klug MG, McCulloch K. (2000) A prevalence methodology for mental illness and developmental disorders in rural and frontier settings. Int J Circumpolar Health. 2000 Jan;59(1):74-86.

CDDC (2003) AUTISTIC SPECTRUM DISORDERS Changes In The California Caseload An Update: 1999 Through 2002
http://www.dds.ca.gov/autism/pdf/AutismReport2003.pdf

Medscape 2005 http://www.medscape.com/viewarticle/508429

MRC (2001) http://www.mrc.ac.uk/pdf-autism-report.pdf

Nylander L. Gillberg C. (2001) Screening for autism spectrum disorders in adult psychiatric out-patients: a preliminary report. Acta Psychiatrica Scandinavica, 2001, June, Vol. 103 (6), pp. 428-434

PHIS (1991) Autistic Spectrum Disorders Needs Assessment Report
http://www.phis.org.uk/pdf.pl?file=publications/Autistic%20Spectrum%20Disorders.pdf

Taylor, Miller, Lingam, Andrews, Simmons & Stowe (2002) Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study British Medical Journal, 2002, Vol. 324, pp. 393-396

Trevarthen, C., Jacqueline Robarts, J., Despina Papoudi, D. and Aitken, K. (1998) Children with Autism Diagnosis and Intervention to Meet Their Needs. Jessica Kingsley Publishers London.

Wing, L. & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. Journal of Autism & Developmental Disorders, 9, pp. 11-29.

MMR again.

2005-12-01T18:56:00.000Z

Well done to Mike Fitzpatrick for setting out the issues so clearly in yesterday's Guardian. This paragraph in particular summed up the essence of the argument for me.

"Over the past decade popular discontents have raged around a range of political issues - fuel prices, student loans, blood sports and the invasion of Iraq. Yet MMR provided a focus for protest that was both intensely personal and political. It brought together issues of health and child welfare that were already central preoccupations of a highly individuated society. The controversy over immunisation allowed scope for individual initiative - at least in the form of a gesture of defiance - that was generally lacking in the public sphere. If you could do nothing about the demise of politics, the apparent decline in social cohesion and civility, and the threat of bioterrorism and war, at least you could take a stand on the issue of MMR."

Now the anti vaccine impetus has moved away from MMR. It is focused on a form of mercury known as thimerosol in the USA or thiomersal to the rest of the world that is used as a preservative in some vaccines. This has given some campaigners a renewed opportunity to vilify George Bush and vaccines at the same time.

To adapt Mike Fitzpatrick,

"They also can do nothing about the demise of politics, the apparent decline in social cohesion and civility, and the threat of bioterrorism and war. But at least they can take a stand on the issue of Thiomersal."
This poster is accompanied by two Bushisms:

‘ Rarely is the question asked: “Is our children learning ?” ’
George W. Bush, January 11th, 2000

and

“They misunderestimated me.”
G.W.Bush, no date

They came at the start of a recent presentation by erstwhile MMR advocate Dr Ken Aitken. Our Ken used to back MMR as a cause of autism and is a recent convert to mercury. I will return to Dr Aitken in a later post. But this neatly illustrates the tactic of linking popular mistrust of politicians to the anti vaccine bandwagon. Has Leo Blair had his mercury shots?

Biomedical Interventions Part 2

2005-11-30T01:05:00.000Z

My article on biomedical interventions for autism in Communication has provoked a largely hostile response. Some people disagreed with me. That is fine. I welcome debate. Others thought the NAS was wrong to publish my article at all.

My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time next time if they feel so strongly.

I do support medical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be properly tested first.

I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism.

I have not read any research that persuades me that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that has not been tested and approved for therapeutic use with young children. It is used to treat heavy metal poisoning. It is not a treatment for autism.

I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.

Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.

Biomedical Interventions

2005-11-13T20:52:00.000Z

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