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First Published Wednesday, 22 October 2008

Should we want to cure autism?

Last Updated: 12.01 BST 22/10/2008

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Two American grandparents are raising the global profile of the condition starting with a controversial debate in London tonight. Cassandra Jardine reports.

Autism might have kept a low profile in the United States, if it hadn’t affected Bob Wright’s grandson, Christian. The chief executive of NBC Universal – the American television and film company – is not the kind of alpha male to take a problem in the family lying down. He’s used to shaking trees, kicking ass, making things happen – and that is exactly what he has done in the five years following his grandson’s regression into autism.

Christian was doing just fine, he and his wife, Suzanne, tell me in between meetings at Downing Street and the House of Commons. “He was talking, he had met all his milestones and he was becoming potty trained. Then, shortly after his second birthday, he started to regress.” Soon they no longer had a grandchild whom they could imagine becoming a world-beater like Wright himself, but a crisis. “The doctor told us it was normal to regress when a new sibling arrives,” he says, evidently still furious. “We lost nine months.”

Once Christian was finally diagnosed, they were horrified to discover that they didn’t know what to do next. “I had nowhere to go for advice,” says Suzanne, “and Bob was running NBC so we thought we were well informed.” When they discovered that one child in 100 is autistic they were even more enraged. “If a cancer struck one in 100,” he continues, “that wouldn’t be allowed.”

Wright set about raising awareness. Boy has he done so. In the three and a half years since he started the charity, Autism Speaks (whose British sister charity is chaired by Dame Stephanie Shirley), he has not just spoken but yelled. The contacts he acquired during 20 years as vice-chairman of General Electric, one of the world’s biggest corporations and parent company of NBC, have been pressed into service. “We don’t just know people,” says his wife. “We don’t take ‘No’ for an answer.”

So far Wright has persuaded advertisers to give $150 million of free air time to a campaign with the slogan: “It’s more prevalent than you think.” American newspapers have provided blanket coverage; $110 million has gone into research; a Combating Autism Bill has been passed through Congress; both Barack Obama and John McCain have publicly pledged to do more. The US Academy of Pediatricians has come “on side”, too. “It is now mandatory to screen for autism, not once but twice at 18 months and 24 months,” says Wright. “Christian was having tantrums and losing speech. These warning signs should have been picked up.”

While Christian, seven, receives treatment for his gastro-intestinal and auto-immune problems, Wright – now 65 and retired – has taken his campaign global. On April 2 the UN held the first annual World Autism Awareness Day; only Aids and diabetes have a similarly high profile. Three weeks ago at a UN General Assembly meeting more than 100 of the leaders’ wives met to hear their battle cry, among them Sarah Brown and Cherie Blair. “We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”

“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

As part of that push, tonight Wright is delivering the first TreeHouse annual lecture, kick-starting a debate entitled: “Are we ambitious enough about autism?”

But anyone who imagines this will be a show of unity leading to a standing ovation for Wright could find their confidence misplaced. His abrasive, individualistic style is not universally popular. “Autism Speaks likes to work on its own,” says Polly Tommey who runs the British magazine Autism File. “Many charities and autism organisations won’t have anything to do with Autism Speaks for this reason.”

She is angry that Wright has not spoken publicly about whether vaccines could be implicated in the increase in cases of autism in recent years. Some say it is merely to do with better, earlier diagnosis. Today he isn’t ducking that issue. “There is no question but that autism is partly genetic and partly environmental, but we don’t know whether environmental factors account for 30, 50 or 60 per cent of cases,” he says. “Unlike cancers which can develop at any age, autism shows fully by the age of three so we ought to be able to zero in on some of the environmental factors in early childhood.

“Vaccines are one of the variables. The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects. When we spend so much money on vaccines, we should be spending money tracking each year group.”

The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?”

Bovill and her ex-husband, writer Nick Hornby, have a 15-year-old son, Danny, who was born autistic. Currently 68 children (including Danny) are receiving intensive specialist teaching at TreeHouse in north London which is transforming them from reclusive, anxiety-racked small children into happy and potentially useful members of society. “I have been able to enjoy my son because we have means and I get breaks – he goes to Nick three nights a week. I want others to have the same. It need not work out more expensive as proper care from an early age improves the children’s prospects and enables parents to work.”

Danny cannot speak but Anya Ustaszewski, a 28-year-old with Asperger’s Syndrome (a variety of autism which does not affect speech), can and will be making her views heard at today’s debate. She works as a disability access officer at the Royal Academy and dislikes Wright’s attitude to autism as a problem to be solved. “I can’t understand facial expressions and body language,” she says. “I find eye contact painful and in stressful situations, like public transport, I use repetitive behaviours to distract myself. But I think autism is a personality type, not a disorder. My ability to hyperfocus has helped me with my studies and my music: I can hear sounds that others can’t. If you take away my autism, you take away me.”

The evening could turn out to be heated, but Bovill believes that getting everyone together in one room to argue is better than “slugging it out on the internet”. On one point, at least, they should agree. The more autism is talked about, and the earlier it is diagnosed, the sooner autistic people and their families may be able to get help.

Source:  http://www.telegraph.co.uk/core/Content/displayPrintable.jhtml;jsessionid=LQYZ0OEF4IO1ZQFIQMGSFFOAVCBQWIV0?xml=/health/2008/10/22/ftautism122.xml&site=13&page=0#form

Highlights of the debate will be shown this week on www.treehouse.org.uk

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