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August 19, 2012 2:33 am

Dame Stephanie ‘Steve’ Shirley on Business, Autism and Israel

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Dame Stephanie Shirley. Photo: Vimeo.

Dame Stephanie “Steve” Shirley is not only a pioneer in business technology, but also a mother who learned first-hand the challenges of raising a severely autistic child. Her son, Giles, who died in 1998 at the age of 35 during an epileptic fit, served as her inspiration to devote much of her hard-earned wealth to autism research and philanthropy over the last 20 years.

In the 1950s and ’60s the computing and IT industries were in their nascent stages. It proved to be an exciting frontier for Shirley, who excelled in mathematics, both professionally and ethically. She decided to employ only women at her software company, now called Xansa, which in 2007 incurred revenue of over 379 million pounds.

“When I started my company in 1962 people laughed at me,” says Shirley, 78, dressed in a chic white suit during an interview with in a hotel lobby in Jerusalem. “They laughed because it was a women’s company.”

But after 31 years of running the business, Shirley eventually employed 8,500 people. As a businesswoman in a very different era, she recalls that women weren’t even allowed to open a bank account or go on the stock exchange.

“Somehow it certainly made a difference when I started calling myself ‘Steve,'” the British philanthropist says. The name allowed her to move forward and even process simple transactions.

Shirley visited Israel this month to be the keynote speaker at the ICare4autism international conference. Her story, coming out officially in her memoirs in October, does not start in 1962, but rather in 1933 in Dortmund, Germany, where she was born to a Jewish father and non-Jewish mother. At age 5 in 1939, just before the outbreak of World War II, her parents sent her on the Kindertransport rescue mission to England, where a childless Christian couple raised her. Though she was reunited with her parents and sister after the war, she has said that she never really bonded with them and never lived with them again.

“[My] foster parents welcomed me into their homes and heart and I’m their child really,” Shirley says.

Though she attended a Roman Catholic school, Shirley says it is not a religious faith that motivates her giving. “I don’t have any faith,” she says.

Rather, it is Shirley’s life experiences that drive her, and it is philanthropy that brought her to the Jewish state.

“The legacy of that traumatic childhood is just as strong 70 years on as it was then,” she says. “When that happened to me I was left with several things… to live a life worth saving.”

Though acknowledging that it is too late for her son, Shirley speaks optimistically about research to better understand autism and help those affected manage the disorder and become productive in society. “These are people, these are citizens and they really have to become part of the collective,” she says.

Now roughly 50 years into learning about the disorder, Shirley says a study she financed in 1999 and 2007, which found that autism costs some 28 billion sterling annually to Britain and 14 percent of a family’s income, showed the disorder’s incredible drain on society in human and financial terms.

Her husband’s career as a physician was in effect ruined by their son’s condition, she says, since his job required him to move. “We just dare not move because we’ve got our support service around for our son.”

For 11 years, Giles, who was learning-disabled and could be violent, lived in a home that Shirley founded. Today, 50 people live there.

Another study, she says, engineered genes in mice so they would possess some autistic characteristics, including losing their squeak, cowering in the corner and being anti-social from other mice. On the creatures, they have been able to reverse the qualities using medication. “That’s the most hopeful thing in the world,” she says. While she always wished her own son could be cured, she realizes there are many who have a high intellect and simply need to manage their disorder.

Realizing that autism is genetic is distressing for a parent, and Shirley experienced guilt and anxiety over it.

“You’re always wondering could I have done better,” she says. “You start off thinking is there something in me, because we know it’s genetic.”

Shirley has reached the conclusion that we all exist on the autism spectrum. “I have an autistic quotient. You have an autistic quotient,” she says. “If you think of it as just an extreme version of the human condition a little bit of us can understand a little bit of them.”

At the conference, Shirley spoke about a goal she set in 2001 to fund nearly $1 billion in research to understand autism by 2012. Though the goal has not been met, much has been learned and she has no plans of slowing down, as many questions remain, including why women are under-diagnosed and why autistic women die younger, she says.

“Whenever I find an issue that [is] not just more of the same, no matter how worthy, then I will support it,” says Shirley, who in 2009 served as the UK’s first National Ambassador for Philanthropy, traveling the world to encourage other nations to give. That year she also founded the organization Ambassadors for Philanthropy.

“It is contagious,” she says of giving. “The ideal model is if I can start something, show that it works… then government will take it and employ and cascade it down through. That’s one of the roles of philanthropists—to take risks. Philanthropists lead and governments follow.”

Israel, she says, is still in the early stages of building a “culture of philanthropy,” a topic she spoke about with the Jewish Funders Network earlier this year. It is still a recipient country to international giving and those Israelis who do give, she says, tend to give privately. She cites Jewish culture, for its emphasis on anonymous giving as being on a higher level, but adds that Israelis do not yet believe that once they are established, it’s time to start looking after others.

“Mature countries have people complement what government and taxation can provide,” she says.

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  • Heretic

    Janice… NO.

    The vast bulk of research has pointed at autism as a primarily genetic disease affected by pre-natal (in the womb) environment. Please take the time to type ‘autism’ into any major science/medical journal like pubmed. You’ll notice that vaccines haven’t been pursued as a cause for ASD in about seven years, since all the work showing it as a congenital problem came to light about 2000 and later.

    And ‘single autism gene’ when autism itself is such a widely varying condition? No, but science has found a host of genes that play a part in autism, which you appear to be ignorant of. I suggest again: read real science journals. Simply type in autism and genetics to see a host of papers published in the past few years that show specific gene involvment in the condition and how in utero environment affects the odds of being autistic. Then you can run a search on how autism can be detected in birth in some cases, and how autistic kids generally suffer from a host of other congential and co-morbid issues caused by the same uterine conditions an genetic problems that caused their autism.

    It’s unlikely there will be a cure for autism. Maybe prevention by attending to maternal nutrition and health before and during pregnancy, maybe genetic screening, but an autistic kid is autistic at birth and it’s unlikely that completely altering someones brain function will be possibly without some seriously sci-fi technology.

  • Janice Loughran

    Whilst Dame Shirley is to be commended and lauded for her peronal understanding of autism as well as for her contribution to finding a ’cause’ for autism and possibly a ‘cure’, the only research in the world today that is pointing to that cause is the environnment – i.e, vaccination (too much), pesticides/organophospates and a whole host of other toxic substances.

    Our children with autism are like canaries in a coalmine – their immune systems are shot and successively wait until that final blow that causes them to descend into autism.

    Please contribute your money and time/attention Dame Shirley, to the research which is day and daily, uncovering the real evidence as to the cause of autism. A gene is not and has not come anywhere near being ‘found’. Autism prevalence is rising for a reason. Not better diagnosis, just easier diagnosis! – doctors cannot ignore it anymore when children who are clearly autistic are walking into their offices.