Autism: What are the ethics of treating disability?

A row about the correct response to the condition – acceptance or treatment – is dividing campaigners and carers. Jeremy Laurance reports on a bitter ideological war

Friday 16 November 2007 01:00 GMT

Battle has been joined between leading organisations in the autism field and Lara Hawkings is in the thick of it. She is the mother of a four-year-old, Edward, who has been diagnosed with autism – and she is cross. What has sparked her ire is a campaign by the National Autistic Society (NAS), backed by a bevy of celebrities, to encourage greater understanding of the condition that affects her son. It is not understanding that she needs, she says. It is help.

"The attitude in Britain is 'Oh dear, nothing can be done.' Hundreds of thousands of people are affected and the response to that is, it doesn't really matter, we have to put up with it.

"In America it is completely different. There they have massive conferences on the subject, lots of research and lots of children being treated. It is widely accepted that a lot can be done for these children."

Mrs Hawkings, 37, is not alone. She was one of 25 signatories to a letter published in The Independent last week attacking the 18,000-member NAS and demanding withdrawal of its latest leaflet, "Think Differently About Autism", which aims to increase public awareness of the lifelong disability.

The NAS's view is that the problem lies not with autism but with the public response to it. People with autism are stigmatised and discriminated against and the NAS's aim is to prevent the damage that can cause by raising awareness of the condition.

Its approach is summarised by Jane Asher, president of the society, and 20 celebrities who have put their names to the campaign, including the actresses Helena Bonham Carter, Sheila Hancock and Prunella Scales and the chef Antony Worrall Thompson.

Ms Asher said: "The lack of understanding about autism among we so-called 'normal' people is one of the major causes of the unhappiness and isolation of those affected by this potentially devastating condition. It would be wonderful to think the NAS's campaign could change attitudes."

That is not good enough for Mrs Hawkings. Her son Edward's autism has improved, not from "greater public understanding" but thanks to medical advice which led her to cut out gluten, wheat and dairy foods from his diet, she said. Like many autistic children, Edward suffered severe gastrointestinal problems which have now been largely resolved.

"He had massive distended tummies, constipation, diarrhoea. He had private tests which you can't get on the NHS which showed he had a 'leaky' gut. A lot of doctors say it's rubbish, but it has helped Edward," said Mrs Hawkings.

She and her colleagues, members of the rival organisation Treating Autism, organised last week's letter to The Independent. Treating Autism is a charity that promotes therapy for children with autism and insists it works. "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 that is pouring out of the United States," its letter said. It accused the NAS of being "on another planet".

It was the first salvo in the latest round of hostilities in the autism movement. Similar disputes have been seen in other areas of disability between those who believe it is best to accept the condition and adapt to it, and those who insist on fighting for research funding and treatments.

But autism is different. It exerts a grip on the public imagination because it disturbs something that is core to being human. That is why it fascinates. In the social world in which we live, the capacity to read social situations and respond appropriately can mean the difference between popularity and loneliness and smooth the route to professional and social success. Autistic people lack this capacity – the uniquely human skill of forging relationships – and can face a lifetime of loneliness and isolation as a result.

Sally Eva, chief author of the Treating Autism letter and mother of a 15-year-old daughter, Edith, diagnosed with autism, said: "People with autism range from those at the severe end who can't tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in "neurodiversity" – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating."

Others have since joined the battle in The Independent's letter columns. On Wednesday, Paul Wady, 43, who was diagnosed as on the autistic spectrum two years ago, and is employed by the NAS, described the demand from Treating Autism as "sheer lunacy".

Later Mr Wady said: "Of course if you can treat someone with autism so that they are more functional and they can progress to adulthood, that is great. But denying someone their nature – that is wrong and stigmatising. It is the idea of eliminating faulty genes that cause the condition that is so objectionable. We are what we are."

In the 64 years since Leo Kanner, who first described autism in 1943, said it was a developmental disorder characterised by "extreme autistic loneliness" and an "obsessional desire for the maintenance of sameness", debate about what it is, what causes it and how (or whether) it can be treated has continued to rage.

One of the most basic, yet still unanswered questions is how common it is. A disorder characterised by "an inability to read social situations" is not easy to diagnose. In some people autism is disguised by high intelligence and may go unrecognised throughout their lives. They are the brilliant but eccentric professors who, when not investigating Etruscan archaeological remains or complex mathematical formulae, are playing quietly with their train sets in the attic.

Classic autism, the severest kind, is thought to affect 30,000 people in the UK. This figure has remained largely unchanged over several decades. However, more than 500,000 are said to have autistic spectrum disorders, including Asperger's syndrome, a mild version of autism, sometimes described as "mind blindness". This more elastic definition has expanded over the years and most experts say this accounts for the supposed rise in autism, because there are no clear boundaries to it.

Uncertainty about the definition of autism and disagreement about the number of people affected lies at the heart of the dispute. Members of Treating Autism, mainly parents of affected children, are desperate for assistance with offspring who may be destroying their homes and any semblance of family life.

The NAS insists it supports everyone with autism and that different individuals have different needs. Benet Middleton, director of communications, said: "The fact that it is a disability doesn't mean that there are not interventions that can help. Treating Autism seems to imply that we shouldn't talk about raising awareness of the problems people face because by doing so we imply nothing can be done."

He said the key question was what worked. "There is an issue about evidence. There are interventions to support people live their lives but there is very little peer-reviewed evidence for those interventions. What works for one person doesn't necessarily work for somebody else."

Famous faces backing the National Autistic Society campaign

Helena Bonham Carter, actress

"Lots of people don't realise that autism is a life-long condition. I strongly believe that with improved understanding, a great deal more could be done to help people with autism to fulfil their potential in life, work and happiness."

Sheila Hancock, actress

"Very few people understand the profound impact autism can have on whole families, affecting every area in their lives. I hope the NAS campaign can achieve greater tolerance, understanding and support for those affected."

Antony Worrall Thompson, chef and broadcaster

"If you consider the number of people with autism and their families, that makes more than two million people affected by the condition. They need access to support and services to help them in their everyday lives. We must do everything we can to help."

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