Why I have donated more than £50 million to autism projects
Giving is a private expression of personal beliefs. The motives hardly matter. The fact is that people give; it’s a defining characteristic of the human species. Money alone is seldom the answer. I try to make giving a committed act of love and do not accept the established vision of the world as a vicious jungle where only the fittest and most selfish survive. I support, and only support, things I know and care about. And autism is one of these things.
Worldwide, the face of autism research is being changed by the sharing of results and open reporting, boosted by strategic mapping projects and increased investment across both public and private funders. It is only the big institutional funders that can do things such as large scale cohort studies or mining health databases, and so help develop the robustness that autism research often lacks.
Already, the better identification of autism is leading to a worldwide surge in demand for services – wildly beyond the capacity of existing budgets. The relatively recent recognition that there are large numbers of autistic adults without diagnoses is exacerbating these pressures even further.
One of the things a donor wants is to provide what the eventual beneficiaries of the research want. We look for measures of project outcomes – at the difference that projects will make – not at what is to be physically provided in terms of equipment or people’s time. How will the research change people’s lives?
Autism, which blurs all social codes, certainly provides a grand challenge. Each new finding has to be independently verified if it is to advance our knowledge. And every new finding seems to raise new questions, almost widening the gaps in our knowledge. It’s a shared voyage of discovery, the purpose of which is to inform action.
It seems to me that much more autism research needs to be focussed on what the social workers call “the hard end”. As the experience of my late son Giles suggests, researchers and ethics bodies must find better ways to study children and adults who are unable to give informed consent. We need always to distinguish between subject assent, parental permission, legal authority and moral responsibility. The biggest disservice is when we pitch our expectations too low.
It is useful to approach the various activities involved in supporting people with autism from a respectful point of view. In 2001, the first ever review of autism literature brought out the need for researchers to share their work so that others could benefit, and to know what others were doing (and respect what they have done) so as to avoid duplication. After all, even failed projects can be a source of learning and innovation.
Maverick views are always likely to get exaggerated attention, while solid, staid research often gets ignored. However, randomised trials are important in both laboratory research and clinical trials. Our theories of what works can be badly wrong. Different experts think they “know” things that are mutually contradictory. Without good evidence, without respect for the basic scientific method, we gamble with people’s lives.
Successful projects are most likely to be interdisciplinary, so we need to do all we can to enable team working and accord respect to colleagues of all disciplines. Quality projects rely on rigorous peer review, so everyone needs to put their own research up for validation. Wishful thinking is always being tested. Research is humbling.
The focus of our education system seems to have changed in recent times from knowledge to skills – and skills last while knowledge fades. This is particularly true of special education. But are educators given the best chance? Do they have the tools for the task?
Autism brings into sharp focus what it means to be human. The neurology of someone on the autistic spectrum is different and if we really seek to understand the autistic mind, we will respect that difference and stop using our own neurotypical yardsticks.
It is not enough to choose the best interventions for the child. They must be the best for both carer and child. If not, as happened to me, the carer can break down and be unable to continue caring at all. Vulnerable people – those who know the fragility of being a person – bring out the best in most of us, most of the time. However, their demanding needs can unmask our own weaknesses. Parents can bankrupt themselves, both financially and emotionally, chasing after something (anything) to help their child.
Cost and opportunity
The national cost of autism to the UK economy is estimated to be a staggering £32 billion a year. Only seven per cent of this goes on education, with the main costs coming from lost employment, both in terms of the individual with autism and in family carers’ much reduced earning capacity.
While autism research is growing, its scope remains tiny in relation to its impact on the country and to the effort and resources expended on other conditions. If the human and financial costs of autism are to be reduced, laboratory findings have to translate into practice. This makes it all the more important that available funds are directed to areas likely to produce the greatest benefits.
One of the greatest challenges for people who are disadvantaged in any way is for society to accept what they have to offer the world. The drivers of progress in this area – once only the professionals – now include families and latterly the vocal groups of people with autism who advocate for themselves.
Even in today’s austere financial climate, some organisations are successfully employing people with autism and there’s no doubt that people on the spectrum can become loyal, hardworking and effective staff. Their approach is straightforward and honest. They may have excellent technical skills and a good knowledge of facts and figures. ITC jobs, for example, are often well suited to people with autism, who sometimes relate better to the consistency of computers than to unpredictable human beings.
My age makes me conscious of how much progress has already been made in the field of autism research and awareness. Of course, even with money – and I’ve invested over £50 million in various autism projects – results are not always positive. As many people have found, research is slow and expensive. It demands involvement and cannot be delegated very far. The best planning in the world gives perhaps only a one in ten chance of a particular research project finding anything that will have a real impact.
Having said all this, though, I’m delighted with how things are moving on with autism research. No-one expects a dramatic breakthrough, but rather we seek a series of incremental advances. Such steady work is both important and urgent. Crucially, it is leading to less invasive interventions and, in many countries at least, more respect for those on the autistic spectrum.
Dame Stephanie Shirley was a computing pioneer who set up a software house in 1962. Her commitment to autism stems from her late son Giles, who was autistic. Through The Shirley Foundation, she founded the Kingwood Trust, Prior’s Court School, Autism Cymru and the autism research charity Autistica.
A Champion of the Autism Alliance, she joined the National Autistic Society on its foundation and received the Research Advocate Award at the International Meeting for Autism Research in 2013. This year, Dame Stephanie launched the National Autism Project which will provide recommendations on UK autism research and practice and seek to raise autism awareness:
Dame Stephanie Shirley’s autobiography, Let IT Go, is available from Amazon.