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This ‘crusade against autism’ will do more harm than good

The author of the new book Defeating Autism: A Damaging Delusion asks why autism has sidelined even Joe the Plumber in the US election.

Dr Michael Fitzpatrick

Topics Politics

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‘I cannot recall a single disorder ever becoming so prominent in a national election as autism has been in 2008. Not cancer, not AIDS, not heart disease.’ David Kirby, ‘Last night’s autism debate – who will win the special needs vote?’, Huffington Post, 20 October

‘These moms needed someone with balls, someone who could actually get booked on a chat show, and more important, a mom who went to hell and back for her kid.’ Jenny McCarthy, Mother Warriors: A Nation of Parents Healing Autism Against All Odds, 2008

‘As we struggled to understand autism and help our grandson, our personal quest became a public crusade.’ Bob Wright, ‘Autism speaks. It’s time for the world to listen’, The Times, 23 October

Forget ‘Joe the Plumber’. According to David Kirby, leading propagandist of the vaccine-autism campaign in the USA, in the great John McCain vs Barack Obama TV debate, the ‘real winner was autism’. Referring to his running mate Sarah Palin’s experience of having a child with special needs (Down’s syndrome), McCain pledged to ‘spend the money, research, to find the cause of autism’. Obama emphasised the need to find ‘additional funding, if we’re going to get serious in terms of research’. Both presidential candidates were responding to the growing pressure in the USA from campaigners blaming vaccines for causing an ‘epidemic’ of autism and promoting a range of alternative treatments.

Jenny McCarthy, model, actress, author, and self-styled ‘Warrior Mom’ on behalf of her autistic son Evan, believes that giving him vaccines made him autistic, and that she has ‘recovered’ him through treatment with diet, and a cocktail of vitamins and supplements. After divorcing Evan’s father, McCarthy has taken up with film star Jim Carrey to give a celebrity profile to the anti-vaccine campaign. They have stormed the TV chat shows, organised an anti-vaccine rally in Washington and a fundraising event attended by stars in Hollywood. While struggling to contain outbreaks of measles around the country, American paediatricians and public health doctors have been thrown on the defensive.


Dr Michael Fitzpatrick’s new book
published this month by Routledge

Bob Wright, former top executive with General Electric and NBC, founded Autism Speaks, a major advocacy and research charity, with his wife Suzanne, when they discovered that their grandson Christian was autistic. After recently addressing the wives of world leaders at a UN General Assembly meeting, Wright last week gave a lecture in London after visiting Downing Street and the House of Commons. Channel 4’s Jon Snow introduced Wright as a man of great wealth and importance, and prominent figures in the world of autism fawned on him like British politicians on the yacht of a Russian billionaire. It was left to people with autism in the audience to challenge his crass parallel between autism and cancer (a more comprehensive response was later published by National Autistic Society councillor Mike Stanton on his blog) (1).

Many people with autism and families affected by autism are troubled by the pejorative depictions of autism and the military metaphors used by these self-appointed advocates and campaigners (though, in fairness, it should be acknowledged that Jenny McCarthy believes that she was chosen by God to represent ‘autism moms’). The very concept of a ‘crusade’, with its legacy of prejudice, division and strife, seems a most unfortunate choice of metaphor for the quest to improve the position of people with autism in society.

The most damaging aspect of the crusade against autism espoused by campaigners such as Kirby, McCarthy and Wright is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. In the article accompanying his London lecture, Wright described the ‘personal tragedy’, the ‘emotional burden’, the ‘devastating’ impact of having an autistic child in the family. Parents who identify with this outlook often describe their own predicament in terms of grief and loss and as one of unremitting battle against the corrosive impact of autism on their child, their marital relationship and on their wider family. This rhetorical excess implicitly disparages and dehumanises people with autism. It is not surprising that such a negative attitude towards autism sometimes seems to lead to a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease.

Though Autism Speaks has in the past at least remained aloof from vaccine-autism controversies, it was alarming to hear Bob Wright in London echoing the themes of the Jenny McCarthy anti-vaccine campaign in the US. (It is well known that Wright’s daughter, Katie, Christian’s mother, blames vaccines for his autism and is a firm believer in alternative treatments.) From the floor, I was able to make the points – as the parent of a child with autism and as a doctor in Hackney where we have had more than 300 cases of measles in the past 12 months – that though there was not a shred of scientific evidence for these links they had caused guilt and distress to parents of children with autism, and risked damaging child health more broadly (by threatening the child immunisation programme).

A third theme promoted by Wright is the urgency of early diagnosis and intensive intervention. As he told the Daily Telegraph, he is ‘still furious’ at the delay in Christian’s diagnosis: ‘We lost nine months.’ (2) Hence he is now recommending screening tests for all children at the ages of 18 and 24 months – the sort of screening tests that have been rejected by national screening authorities in Britain. This is partly because currently available tests have proven unsatisfactory in pilots, but more importantly, because, as Michael Rutter, Britain’s senior autism authority, told a recent conference, there is ‘no convincing evidence that benefits of psychological intervention are contingent on either very early or very intensive intervention’ (3). While some activists with Asperger’s syndrome are fearful of the eugenic implications of antenatal screening for autism, this remains more of a science fiction scenario than a serious prospect in the foreseeable future. Meanwhile, extravagant claims for the effectiveness of early intervention programmes intensify the anger and anxiety of families affected by autism – as Wright’s personal experience illustrates.

Many families affected by autism welcome the higher public profile of autism, as reflected in the US election campaign. If this leads to greater resources to enable children with autism to get appropriate schooling and for affected families to get the support that they need, then that will be progress. If, however, resources are diverted into the pursuit of phantom environmental causes – such as vaccines – or the promotion of quack treatments or fad therapies, this is likely to have damaging consequences for all concerned. What we need is not a crusade but to move beyond discourses of blame based on irrational views about autism.

HEALTH TESTING

‘Doc, I need a complete check-up.’ This is one of the most depressing openings to a medical consultation in general practice – all the more so because it is increasingly commonly heard from younger and younger patients.

The problem is not only that the demand for a check-up leads to investigations that are more likely to cause anxiety (‘false positives’) and beget further investigations and unnecessary treatments, than they are to provide reassurance. The deeper problem is the mindset underlying the demand, the belief that health is a state that can only be achieved through a combination of an ascetic lifestyle and regular subordination to medical examination and investigation.

So I am delighted to hear that the question of health testing is being opened up to public scrutiny. Following up the excellent pamphlet, Making Sense of Testing, Sense About Science and the Royal College of Pathologists are staging a debate as part of National Pathology Week. Andrew Vallance-Owen will be speaking on behalf of BUPA, the organisation that has done more than any other to promote useless tests for healthy people – and to convince both employers and employees that these are useful. He will face my GP colleague Margaret McCartney whose column in the Financial Times has put forward a critical and rational approach on this and on other issues. The debate will also feature chemical pathologist Danielle Freedman, another contributor to the Sense About Science pamphlet, and the Liberal Democrat MP Evan Harris, a veteran of the MMR wars. Let the testing wars begin!

Health testing: what’s in it for you? will take place on 6 November 2008 from 6.30pm at The Royal College of Pathologists, 2 Carlton House Terrace, London SW1Y 5AF. For more information, click here or contact {encode=”ruth.semple@rcpath.org” title=”Ruth Semple”} to reserve a place.

Dr Michael Fitzpatrick is a GP working in Hackney, east London. His new book, Defeating Autism: A Damaging Delusion, was published this month by Routledge. (Buy this book from Amazon(UK) or Amazon(USA).) He is speaking in the session Boozy Britain at the Battle of Ideas festival on 2 November at the Royal College of Art.

Previously on spiked

Dr Michael Fitzpatrick showed how measles outbreaks in London were the results of a rash panic, revealed how the anti-MMR gravy train had been derailed, took a look at autism-lit and called for a halt to the witch-hunting of Dr Andrew Wakefield. Or read more at spiked issue MMR and autism.

(1) Mike Stanton, Bob Wright – Autism Speaks in London

(2) Cassandra Jardine, Should we want to cure autism?, Telegraph, 22 October 2008

(3) Michael Rutter, Historical perspectives: what have we learned from research, Powerpoint presentation for National Autistic Society conference

To enquire about republishing spiked’s content, a right to reply or to request a correction, please contact the managing editor, Viv Regan.

Topics Politics

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