Interview

Great Dame
Dame Stephanie Shirley is an entrepreneur turned ardent philanthropist who has given millions of pounds to autismrelated research and education. Gillian Loughran talks to her about her work and extraordinary life
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We met at the Royal Society of Medicine, just off Londons Oxford Street. It seemed appropriate because most of my meeting with Dame Stephanie Shirley was spent talking about autism research, which this leading philanthropist has generously funded. The former technology entrepreneur has given 67 million to various causes, but says a whopping 75 per cent has gone to autism-related projects. She threw
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a lifeline to parents when she set up Priors Court, an independent special school for students with autism in West Berkshire. There are considerably more autism causes fuelled by The Shirley Foundation, which she established in 1996. I helped set up the All Party Parliamentary Group on Autism, she casually throws into the conversation. In fact, she helped set up similar initiatives in the Scottish Parliament and the Welsh Assembly, too. Im donating my brain to autism research, she declares proudly and a little loudly, but it doesnt raise an eyebrow among the medics sitting nearby. This brings us to her establishment and presidency of Autistica, the charity that raises funds for medical research and which seed funds a brain tissue bank at Oxford University. She has also funded research at The University of Edinburgh that is making exciting breakthroughs; however, she has regrettably failed in her stated ambition of finding the cause of autism by 2014. Now aged 80, she embraces the somewhat controversial prenatal testing approach to autism, which is quietly gathering ground around the world, because parents should have a right to choose, she says. There are concerns about the cost of autism, she snaps in a boardroom-like fashion. She draws attention to the lifetime cost of someone with the condition, which she puts at almost 1 million. I present an opposing view of prenatal testing, expressing the concern of those who fear the introduction of unethical practices even a whiff of eugenics creeping into the world of autism.

What agonies lay behind these inscrutable outbursts? I can only wonder and weep
of just 35 on 17 October 1998. The books cover says it is The Story of the Entrepreneur Turned Ardent Philanthropist, which I think sells it short. Its much more than that: its the stuff that film scripts are made of. Her remarkable life story charts her unaccompanied arrival in England as a refugee at the age of five, just before the outbreak of World War II. She went on to set up a technology company with just 6 and in the 1980s was reported to be worth 150 million. It is also an important book for the autism word because it conveys, in heart-breaking detail, what life can be like for families impacted by the condition. She had a nervous breakdown, her marriage almost broke down as well and she admits bravely to a big taboo in the autism world: contemplating suicide on more than one occasion. This is an admittance that will no doubt resonate with many autism mothers who have walked in her shoes. The books Let It Go title appears to have been chosen because it reflects the importance Dame Stephanie places on the need to let go of things in life not just giving millions of pounds to charitable causes, but also control

of what she establishes. She likes to set things up and then step back so that she can empower others who run them. But one senses in her book that, as with many parents of a child with autism, there are things that she understandably finds impossible to let go, or to forget. She kept hold of Giless school reports, which she shares in her book. They are of the kind that would make many parents despair on reading them. The stress of it all had Dame Stephanie smoking 60 cigarettes a day. Giless home-school book talks of him head butting, hitting himself, shouting and roaring and going into trance-like states and theres more which, as the mother of a child with autism myself, I found hard to read. We feel her anguish when she writes: No amount of habituation lessens the pain that a mother feels on witnessing, or even being told about such episodes in her sons life. Elsewhere, she says that stabs of sympathetic misery seem scarcely less intense when I read about them now, and: What agonies lay behind these inscrutable outbursts? I can only wonder and weep.

Rare insight
Let it Go offers a rare insight into the plight of parents at a time when Bruno Bettelheims refrigerator mother theory of autism was widely accepted by the medical establishment and the public. As Dame Stephanie recounts, it was also a time when children such as Giles were considered by the state to be uneducatable. After saying goodbye, I glance back at this youthful-looking octogenarian, an icon in the autism world. She is walking briskly on to her next appointment, trying to help where she can, keeping Giless memory alive in the good she does and still wanting answers to what she terms the big question: what causes autism.
Let It Go is published by Andrews UK, 8.99 Au t i s m | e y e I s s u e 1 2 2 0 1 3 15

Moving account
Are you sure you dont want a pastry? she injects, before asking: Have you finished the book? On the table is my well-thumbed copy of Let It Go, her memoir, which charts her extraordinary life. The book gives a moving account of her experience of caring for her son, Giles, who was severely impacted by autism. He died after an epileptic fit at the age
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