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Meet the autism pioneer with the drive to find out more

Janet Snell talks to a philanthropist Dame Stephanie Shirley, whose work was inspired by her struggle to find adequate care for her son

Janet Snell talks to a philanthropist Dame Stephanie Shirley, whose work was inspired by her struggle to find adequate care for her son


Music sessions are held at Prior's Court School
Picture: Prior's Court School

When Dame Stephanie Shirley’s son Giles was diagnosed with autism and ended up spending ten traumatic years in a long-stay hospital, she vowed to try to provide an alternative for him and others like him.

Using a legacy and cash from her successful business she began by setting up a support service for people with severe autism, then a school and, in 2004, the charity Autistica, which funds and campaigns for research to understand the causes of autism. Now aged 85, Dame Stephanie is winding up the Shirley Foundation, which has given more than £50 million in grants to pioneering projects. But she is still active on the lecture circuit, raising money for her charities and a passionate advocate for people with autism.

She arrived in this country from Germany in 1939 as an unaccompanied child refugee, later marrying and setting up the IT company that was to make her fortune and provide the financial backing for her philanthropic work.

It was after she received the ‘bombshell’ news that her son had severe autism that she became interested in the causes of autism and what can be done to support those diagnosed as on the spectrum.

Stuck in hospital

About 700,000

people in the UK have autism (1:100 of the population). Source: National Autistic Society

‘To be honest I used to be an intellectual snob but I’ve come to have a huge respect for people with autism,’ says Dame Stephanie. ‘I’m glad to say much has changed since Giles was born in 1963. In those days they thought only boys had autism and that institutional care was all they could hope for. But I’m horrified that even today many healthy people with autism are stuck in hospital when they don’t need to be.’

Giles was admitted to Borocourt Hospital in Berkshire when he was 13 and didn’t leave until he was 23. ‘In fact both of us ended up in hospital as the stress caused me to have a breakdown,’ says Dame Stephanie. ‘I came home, but Giles didn’t, and at the time I thought he would be in there for life. They called it a hospital for the subnormal and although at the beginning we thought it was what was best we came to realise he was losing his human rights, and we needed to get him out.’

The family was able to use money bequeathed by Dame Stephanie’s late mother to buy a small cottage for Giles and he was joined by another young man with autism. Support staff helped to look after them and this proved to be the precursor of the charity Autism at Kingwood.


Dame Stephanie Shirley. Picture: Alamy

A place he could call home

‘We began gradually, at first just letting Giles stay overnight in the cottage. It became a place that he could call home. He had become very institutionalised so we took small steps, but once the other young man settled in we were able to move on from there.’

It became a registered charity in 1994 and now specialises in supported living and has a transition college for young people aged 18 to 25. Its ethos is to help people with autism and Asperger’s ‘to live the lives they choose'.

600

staff at Prior’s Court School, including 3.5 full-time equivalent nursing posts plus two teaching robots

It was when Dame Stephanie accompanied the charity’s chief executive on a visit to the United States that she had the idea of opening a school for people with autism. ‘We went to the Boston Higashi School, which is run according to Japanese principles with a regime built on respect, learning to overcome obstacles and the use of exercise to combat stress,' she says. 'On my return I went to the Department for Education and said: “Why can’t we have a school like that here?” But in the end I set it up myself.’

It took 22 months from the initial concept to opening Prior’s Court residential school in a Grade II listed building in the Berkshire countryside near Newbury.

'I’m leaving my brain and body to medical research because I believe it’s the last gift you can give'

‘We fitted out the building using a design that focused on safety but with a compassionate, non-institutional feel,’ says Dame Stephanie. ‘I’ve filled the place with original works of art and people are astonished by that. But when these young people are given a beautiful place to live they rise to the occasion. Prior’s Court is physically, spiritually and intellectually the school that I would have wanted for Giles. I couldn’t do better than that school’.

125

adults with profound autism are supported at Autism at Kingwood, which employs almost 300 staff

After the success of Prior’s Court and Autism at Kingwood, Dame Stephanie was still bursting with ideas and her next venture was launching the charity Autistica in 2004 to promote research. This was instrumental in setting up the UK Brain Bank for Autism in Oxford, which has 200 brains for post-mortem medical studies. Giles died at the age of 35 following an epileptic seizure. Dame Stephanie says she is proud that his brain is there. ‘I’m leaving my brain and body to medical research because I believe it’s the last gift you can give,' she says. 'How else are they ever going to make a breakthrough? We’re still a long way from understanding the genetic make-up of people with autism.’

Autistica also enabled the setting up of the Discover network to encourage people with autism to get involved with research projects. ‘Of all my projects Autistica could end up being the one that makes the most difference to most lives.  But the initiative I’m most proud of is Prior’s Court’. 


Prior's Court is 'focused on safety but with a compassionate, non-institutional feel'
Picture: Prior's Court School

A voice for those without a voice

In October 2018, Prior’s Court hit the headlines when one of its minibuses was bringing some young people home from their work placement and it was involved in a motorway crash. Three members of staff died. Dame Stephanie describes it as ‘a terrible blow'. ‘But once we’ve fully recovered from the tragedy we have plans to expand and set up a new school on another site.’

Despite all the setbacks and tough times along the way, Dame Stephanie remains irrepressible. Her most recent initiative is backing a group of people with autism to set up the National Autistic Task Force, which aims to ‘act as a voice for those without a voice’.

‘I don’t think society is ready yet to accommodate people with severe autism or severe learning disabilities, but we must keep on striving to try and change that and support people with autism to fulfil their potential,' she says. ‘I’ve personally done my utmost to make a difference to this sector and to promote the cause so people with autism can enjoy full rights as a citizen. That’s what I want my legacy to be.’

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