Dame Stephanie Shirley

Women’s Medical Foundation, House of Lords Gala Dinner

Women's Medical Federation
House of Lords Gala Dinner

11 November 2011

Dame Stephanie Shirley

President, ladies. In a hungry world we are lucky to eat and drink so well. And in such a wonderful setting. Thank you for inviting me to join you tonight.

200 years ago, it was Margaret Bulkley who, dressed as a man, became Britain's first woman doctor. 150 years ago Elizabeth Blackwell followed in the States. And this April we had the first Solomon Island woman doctor. I salute them all. As I admire each of your personal achievements and all that this federation is doing.

I've been asked to share my story, which I tell with pride and equal humility.

My childhood was different. My father was a Jewish judge in Dortmund near Berlin, during a time of horrendous discrimination. In 1933 he was fired by edict of the so-called Third Reich and the bad times began with the family moving round Europe trying to find a safe place. I was too young to remember the worst and my parents did a very brave thing – when I was five years old, they organised for me to come to England, on a Kindertransport from Vienna, into the arms of strangers, thinking never to see me again.

That was the largest ever recorded migration of children (aged up to 16). There's a plaque in the House of Commons giving a public Thank You to Britain for taking us in. We were called Friendly Enemy Aliens. At five, I was one of the youngest on my train of about a thousand children (with two adults) though there were some babes-in-arms, cared for by girls (16+) who had committed themselves to return to almost certain death. (I did not know this at the time but now record their heroism).

We had lost all human rights. Hitler had taken nationality away from Jewish families so I was one of 10,000 unaccompanied child refugees, stateless, penniless and without a word of English. Actually my father had taught me some useful phrases "slow combustion stove" and "windscreen wiper" but I didn't know (excuse me) how to ask to go to the bathroom.

My Jewish star is now in the Holocaust Museum. And Ruth, the doll who travelled with me on the 2½ day journey, is safe in the Bethnal Green Toy Museum.

Of course pain allows you to grow. I was lucky to be fostered by a wonderful Christian couple who brought me up as they would their own. Doubly lucky to be later reunited with my birth parents. But I learnt as a child to deal with change because tomorrow is always different; and I try not to fritter the days away, to make each day worthwhile, to make my life merit saving. We never know what life holds for us.

Post-traumatic stress was unrecognised in those days. A colleague suggested the Tavistock clinic to me. I attended it for 6 years – and what I now know was a Jungian analyst starting 3 sessions a week and reducing after some time and eventually phasing out, guided me out of my survivor guilt depression.

* * * * * * *

My business life was also different. In 1962 I founded an early computer software company. It couldn't have started smaller – with less than £100 in today's terms and on our dining room table. My reasons were negative (the glass ceiling) but I came to enjoy the freedom and intellectual challenge of business.

It was a company driven by social considerations. A company of women. A company for women. I recruited professionally qualified women who had left the computer industry on marriage or when their first child was expected. And structured them into a home-working organisation. That crusade for women was the founding philosophy.

I'm often asked for the secrets of commercial success. One secret is to choose your partner very carefully. The other day, when I said, "My husband's an angel", a woman complained, "You're lucky, mine's still alive".

13 years from start-up, Equal Opportunities legislation made my company's positive discrimination illegal. We started to employ men (if they were good enough!). And the company gradually became well balanced between the sexes.

I came to be one of the wealthiest women in Britain but am more proud to have given away enough to take me out of the Rich List. I was on Desert Island Discs last year. My husband need never worry were I to be marooned. Several charities would quickly come and find me!

Having been the recipient of charity, I'm sensitive to issues in a way that people who have always had enough money, enough not to be hungry anyway, find hard to imagine. The emptier your stomach, the more love you have in your heart.

Most business does not put profit in front of everything else and is highly ethical. But I did have to dissemble – to get a response to my business development letters, I didn't sign them Stephanie but rather Steve so as to get through the door before anyone realised he was a she! I'm often asked if I'm a feminist. The answer is No. But I'm a humanist, committed to valuing each human being and convinced that every single person can make a difference.

* * * * * * *

Let me tell you about my learning disabled son, Giles.

Giles was our only child, a beautiful baby. I know every mother believes that. After my own traumatic childhood, I'd aimed to give him a quiet, secure life and he was so contented as a baby that at first I thought we were doing rather well.

At eight months I took him to the doctor because I had concerns about his lack of progress. He'd be totally absorbed in some trivial thing, like the sticky label on a toy, rather than the toy itself. He was late in walking and late in talking.

Then he lost the few words he had and (like the changeling in the fairy story) turned into a wild, unmanageable toddler.

And then the diagnosis; Giles was severely autistic.

Autism strikes at the very heart of what we mean by humanity with:

  • A failure to interact or relate socially
  • Or to use language to communicate
  • And an obsessive desire for sameness

Autism is a spectrum disorder. Many of those affected are not like Giles but have high intellect. They remain extremely vulnerable, finding it hard to make friends, hard to get into employment.

Worldwide recognition of the disorder varies: the WHO lumps it under Mental Health and Substance Abuse. Saudi Arabia tends to put it under the umbrella of cerebral palsy (this is to appease parents who see autism as a stigma).

An estimated 65 million people are affected worldwide, half a million in this country, the majority of them male. Is this because of underdiagnosis for females – as happens in a number of areas - or because autism is indeed "extreme maleness"? Certainly studies show increased testosterone in the serum of foetuses who later turn out to have autistic traits.

I got Giles into a decent primary school for non-communicating children. It was the other end of the county and an ambulance service used to collect him on Monday morning and bring him back on Friday afternoon.

You may be interested to know that the existing emergency ambulances with their cramped treatment space and unhygienic design have been redesigned with side-loading trolley layout to give 360˚ access to the patient and built-in washing facilities. These will replace the existing ambulances as they become obsolete.

Giles became increasingly difficult, banging his head repetitively and sometimes lashing out at us. He needed constant attention and care. Like other parents of a learning disabled child – even those with less vulnerability – his disorder dominated our lives. To make things worse, puberty hit early for Giles and he couldn't take it at all. It was then that he also developed epilepsy.

He enjoyed rude health but anything that did go wrong was always put down to his autism. Similarly, unusual sensory experiences are still listed as an associated, rather than essential, feature of autism in diagnostic classifications.

Great Ormond Street Hospital eventually diagnosed Autism (at that time considered to be a very rare disorder). Nowadays it has a national Centre for High Functioning Autism Spectrum Disorder, trains autism professionals, is starting a study into transitions from primary to secondary education and into the adult world; and a training pack for teachers and parents. And – what Giles and I would have found so useful – is planning trained support workers to help all their patients with autism.

Too often researchers don't talk to clinicians and clinicians don't talk to educators. And no-one seems to listen to the parents, experts in their own children.

Those were also awful, ghastly years and eventually (when Giles was 13) I cracked up and we were both hospitalised. Me for a month (I was back at work within the year) but Giles for 11 years in an old style subnormality hospital.

As those years passed, Giles lost most of his human rights. We decided to remove him from his locked ward and look after him again ourselves, this time with paid help. Progress was slow, but in between his extreme and challenging behaviour, he was a charming innocent, (the Victorian term) who loved simple jigsaws and pussy cats.

When Giles was 35, he died. Suddenly and unexpectedly during his first ever night time seizure. It was bittersweet. We miss him terribly. But it is a relief not to have him survive us. Altho nobody ever quite recovers from the death of a child (I have shafts of insupportable pain even after 12 years), I have now learnt to live without Giles, without his need of me. Autism has become an on-going focus of my life. And the more money I give away, the richer that life seems to become.

I believe in post-traumatic growth: having learnt the meaning of life I have no choice but to reflect on what it is that I really want to do with mine.

In order to make a difference, in order to create something sustainable, I use my time and wealth to pioneer new projects that wouldn't otherwise happen and that, if successful, (and pioneering projects can and do fail) but if successful make a real difference.

Classically Giles had been the first resident in the first home of the first charity that I set up: Kingwood. This now supports around 50 adults with autism and challenging needs. It took 17 years to reach financial independence – a salutary reminder that it's not enough to "do good", it has to be sustainable.

I believe that giving, giving is a social and cultural activity not merely a duty or financial transaction. Money alone is not the answer. Sure, giving can be a compassionate act of detachment. I try to make it a committed act of love. Giving and the service of others have given me something to get up for each day. And meaning to my life, the life that was saved.

I've got actively involved in several schools for pupils with autism. Prior's Court School has been the largest of my charitable projects, both financially (£30m) and in time and effort (it took me 5 years). The pupil profile was modelled on my Giles: autism with moderate to severe (most people would say profound) learning disability. Few pupils have any speech.

Wherever I found a gap I tried to help. Autism Cymru for bi-lingual Wales led to the world's first national plan for autism to be implemented there from 2008. Music for Autism, the economic aspects of autism, the All-Party Parliamentary Group on Autism is now the second largest All-Party Group. The first is Beer!

* * * * * * *

Perhaps inevitably – because it's the most strategic, I'm committed to research into the causes of autism. An estimated cost way beyond my personal resources. Over £2 million has gone in so far. So as part of a global initiative I founded Autistica to use science in the service of autism. Its role is to raise new money to find the causes of what we now believe to be different autisms; what they are as distinct from what they look like.

Not sometime. But in time to benefit today's children.

I also fund Autistica's infrastructure costs. It has a number of projects. The international search for the genes that, if not causing autism, rather confer susceptibility, augers exciting prospects for future work that will support the diagnosis and treatment of autism. Science has moved on from behaviour to biology.

The next 5-10 years can also be expected to delivery significant advances in brain imaging. Discovering how the brain works is one of the grand challenges in human health. The Autism Brain Bank at Oxford, linked with the Autism Tissue Project in the US, makes donated tissue available to approved researchers worldwide. It is only through this post mortem work that the fine detail of brain function and development can be understood. The brain donations made so far have used in over 800 projects. Giles' brain is there. My own brain, indeed whole body, is to go to medical research. Control tissue is important.

Autistica funds pilot studies and mentored Fellowships to increase the UK's research capacity. Most researchers use adults with Asperger syndrome as subjects. But there is a crying need to work with those more gravely affected. Whatever it is that you seek to do, it's important to try for child assent, get parental permission, have legal authority and always be morally responsible.

Autistica funded a new Chair in autism at Cardiff University. Also working to fund a Fellowship in Scotland. And internationally, to date with Saudi Arabia and India... People are always asking if we can't do more. No one has ever complained that we do too much.

Parents seek desperately for a cause: something to blame. To answer your unspoken question: study after expensive study has shown a resoundingly negative link with MMR.

It's not necessarily a bad thing when the science community changes its mind. Science is always progressing the forefront of our knowledge despite the vastly different fields of research, the basic journey is generic: discover – gather – analyse – create – share.

But as many people have found: Research is slow. Research is expensive. The best planning in the word gives perhaps only a 1 in 10 chance of a particular research project finding anything that will make a difference. Progress depends on research, yes, but also vigorous information exchange amongst researchers; and translation of their findings into service provision.

Ladies, those people – children and adults – with autism whom you have seen, or know, or love stand for countless others around the globe. For parents, the social and educational aspects are more important than the medical ones. A child not responding to its name at one year is an early warning sign. But diagnosis can only be done by you, the medics.

Autism is no longer something that can remain on the fringes of policymaking, provision and importantly knowledge. It is a mainstream and very serious concern. It has recently been rebranded as AQ, the autistic quotient, implying that it is an inherent human condition. Autism strikes at the very centre of what we think of as being human. To understand the autistic mind and allow lives of equal citizenship is a major and crucial problem.

Copyright November 2011

Dame Stephanie Shirley

Tel: +44 (0) 1491 579004
Fax: +44 (0) 1491 574995
Email: steve@steveshirley.com
Website: www.steveshirley.com

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