The Shirley Foundation

[call me jaded]

Looking for autism answers

(Filed: 30/06/2005)

 

 

 

The facts

 

 

 

Philanthropist Dame Steve Shirley is leading the fight to understand autism, reports Cassandra Jardine

 

When she was young, Dame Steve Shirley is explaining, cancer was referred to as the "Big C". Different types of cancer were lumped together in one general, frightening concept. "That's where we are with autism now," she says.

 

 

A life dedicated: Dame Steve Shirley, whose son Giles died in 1998. 'What I remember most about him was his smile'

 

Fifty years on, the various types of cancer - their causes, patterns and treatments - are much better understood as a result of co-ordinated worldwide research and patients' chances of survival have improved considerably.

 

She would like the same to happen with autism, which is why she has dedicated not just her time, but �50 million of her own money to improving our understanding of the disorder.

 

When Giles, her only child, was diagnosed in the Sixties, Dame Steve had never even heard of autism. Looking back, she suspects that her father, a high court judge who was fascinated by railway timetables, might have been on the autistic spectrum, but in those days, it was scarcely known, and she received little help.

 

In 1998, Giles died while having an epileptic fit. He was 35. For each of those years, her life was dominated by the struggle to care for him. Her only escape was in running the software company - formerly FI, now Xansa Plc - which made her one of the richest women in Britain, and prompted her to change her name, for business purposes, from Stephanie to Steve. "The only time I could forget Giles was when I was working," she says. "And the only time I could forget work was when I was with Giles."

 

He was difficult to care for. Even as a baby, he did not respond to her or her physicist husband, Derek. By the time he was three, he was violent and uncontrollable. For a woman who is wearing a pale pink suit, and works from a flat in Henley, decorated entirely in pastels, it must have been hell having a child who wrecked everything, head-butted her, and threw his food on the floor.

 

As Giles grew older, he lost what little speech he once had. "He was a distraught, unhappy child who knew only pain," she says and, by the time he was 13, she was so worn down by looking after him during the day and working - mostly at night - that she had a breakdown. For the next 11 years, he lived in a hospital. "It was him or me," she says, but she doesn't feel guilty because she did all she could, including starting a therapeutic home in which he lived for the last 11 years of his life.

 

The home, her first charitable involvement with autism, is now the Kingswood Trust, which cares for 39 profoundly disabled young adults. Next, she set up Prior's Park, a school which equips severely autistic children for simple work.

 

Driven by survivor's guilt - as a half-Jewish child, she came to England from Germany on a Kindertransport - she has always put her gifts to full use. Now, aged 71 and retired, she is using her business experience to create a coherent, rigorous and strategic approach to autism.

 

"What do we have to do," she asked herself, "to get at the causes of autism?" Her answer has been to become the driving force behind the National Alliance for Autism Research. Last year, she used her charitable Shirley Foundation to commission a survey of all the research in the field. She found that much of it was bitty, duplicated and dealing with outlying issues.

 

This week, one of the first signs of this more strategic approach was evident when she brought together academics from Britain and the US. In the august surroundings of the Royal Institution, renowned names like Simon Baron-Cohen (whose recent book described autism as an extreme form of maleness) talked of the areas of the brain affected, the genes that appear to be responsible, and the studies currently under way.

 

The recent sharp increase in autism has led to fierce debate: is this due to better awareness or a real increase? Those who believe it to be an epidemic have cited possible causes: vaccinations, antibiotics, medicines taken by pregnant women, or dietary factors.

 

Dame Steve believes that, as with cancer, it will soon be possible to unpick the many differing disorders, currently bracketed together under Autism Spectrum Disorders. It would cost �400 million to fund the research: "That's way beyond my means," she says, so her plan is to raise awareness in Government through a walk in Windsor Great park on July 10, at which 300,000 are expected.

 

In his last years, Giles was doing well - he could paint, look at pictures, and was less frustrated, because he had been taught how to communicate yes and no, non-verbally. "What I remember most about him was his smile," she says.

 

When he died, she thought she would never be happy again, but her mission has given her a new purpose. "When Giles was alive, 99 per cent of my efforts went on being his mother. Now, I can concentrate on being a friend to autism. I'm happier than I've ever been, because I'm not just giving away money, I'm getting so much from it."

 

 

cassandra.jardine@telegraph.co.uk

 

For further information, see www.naar-uk.org; 01491 412311

The facts

 

Autism is a complex brain disorder that often inhibits a person's ability to communicate, to respond to surroundings, or form relationships.

 

First identified more than 50 years ago, it is typically diagnosed by the age of two or three, and affects people of all racial, ethnic and socio-economic backgrounds. It is four times more common in males than females. While some are mildly affected, most people with the condition will require lifelong supervision and care, and have significant language impairments. Since there is no definitive blood test or scan, diagnosis is based on observation of behaviour. Despite increasing national interest and high prevalence - one in 167 is widely accepted - autism research receives less funding than many less common medical problems.

 

http://www.telegraph.co.uk/health/main.jht...30/ixhmain.html

[Lucas]

What I fear most is that she will find exactly what she is looking for, as has always been the case with Autism since the year dot.

 

Has she asked an Autistic what makes us all different and the same? I remember my finger-flicking causing my hearing to improve, then it stopped working(ruling out power of suggestion) and then it started working again. Would this be considered one of the Autistic disorders?

 

Autism is set up so different people will look at it in different ways and see different things, even those looking out from the inside. This doesn't mean Autism is a lot of different conditions.

 

I do like it when an article says Autism is a complex disorder, then gives a simplistic explaination of it:

 

Autism is a complex brain disorder that often inhibits a person's ability to communicate, to respond to surroundings, or form relationships.

[call me jaded]

Anybody else going on the walk?

 

http://www.naar-uk.org/Downloads/NAAR%20flyer.pdf

 

http://www.naar-uk.org/

 

I do like it when an article says Autism is a complex disorder, then gives a simplistic explaination of it:

 

 

QUOTE 

Autism is a complex brain disorder that often inhibits a person's ability to communicate, to respond to surroundings, or form relationships. 

 

A rehash of the triad by a junior journalist.

 

I applaud anybody giving �50million of their own money to autism research.

[Lucas]

But what is the research for? The article has pointed in a direction that I'm a little frightened by.

 

I'll say again how all questions about Autism fall into the same pit fall as the questions about existence put to Deep Thought which gave the answer as '42' after thousands of years calculating. All questions fail to get a sufficient answer because the questions themselves are insufficient.