IMFAR, San Sebastian, Spain
IMFAR Annual Meeting
Kursaal Centre in Donastia, San Sebastián
2 May 2013
Dame Stephanie Shirley
INSAR 2013 Research Advocate
President, ladies and gentlemen.
It is a delight and honour to receive this year's INSAR Research Advocate Award. I have long been aware of the Society's collaborative approach to improve the lives of individuals and families living with ASD. May I publicly applaud:
- its global reach
- emphasis on high quality
- and determination to transition science into service delivery.
As I describe in my memoir, Let IT Go, [you can get it from Amazon!] all my wealth is self-made. So why and how do I choose to give it away? Giving is a social and cultural activity not merely a financial transaction. Money alone is seldom the answer. Sure, it can be a compassionate act of detachment. 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 the most selfish survive.
Giving, giving is always 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.
I support, and only support, things I know and care about. And autism is one such.
* * * * * * *
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.
When it comes to public funding, it's taking more than a billion euro for about 80 research institutes (mainly from the European Union) to take part in The Human Brain Project. And $100m was announced by President Obama on WAAD last month to research how the brain's individual cells interact.
It's only the big institutional funders which 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 recent recognition that there are large numbers of autistic adults without diagnosis will increase these pressures even further.
So how does a private funder sort out what to support?
* * * * * * *
My late son Giles was born in 1963 - learning disabled, epileptic, without speech, regressively (indeed aggressively) autistic. Like many parents of a child with autism, the disorder came to dominate my life. For 35 years I was involved with the daily experiences of caring. But despite all the love in the world, the quality of his life was desperately poor.
Earlier today I was on Autistica's Poster Session showing the results of a recent UK survey of families and individuals with autism. Parents' top priorities for research are:
- Earlier diagnosis
- Understanding the causes of autism and
- Addressing the difficulties which go with autism.
Families are in dire need of results. Delay means lost opportunity.
So understand how parents can bankrupt themselves, (financially, emotionally) chasing after something, anything to help their child. Of course researchers may work for the intellectual joy of creation. Perhaps gathering knowledge for knowledge's sake.
Not that anyone expects a dramatic breakthrough; but rather seek a series of incremental advances. But know that your work is both important and urgent.
* * * * * * *
What can a generalist like me add to this meeting of specialists? Let me try to give you some understanding to help in your fundraising.
You'll be encouraged to know that there are always, but always, trusts and major donors looking for good projects to support.
Autism is one of many competing fields. It would be good if researchers could also become activists and promote getting more money for autism research.
There's no ought or should about giving. Givers tend to work in a focused, professional way, to projects and organisations that may not be the most needy but that fit their mission.
My work is Pioneering – never more of the same, no matter how worthy and Strategic – what do I mean by that? Projects that, if successful, make a real difference; that produce tangible results against the sea of need.
I like to do new things and make new things happen.
One of the things a donor wants is to provide what the beneficiaries want. We look for measures of project Outcome – what difference does it make; not what is to be physically provided in terms of equipment or people's time, but what were the resulting changes to the beneficiaries? What was the Impact made to society generally?
When people understand the difference a given donation makes they will give three, or even 33, times as much!
How do we define success? Of course there's an element of due diligence – was the money well spent on what it was supposed to be? It's necessary to demonstrate good housekeeping.
There's an element of practicality: how much hassle is there getting the reports in on time? Donors don't give to be thanked; there's no need to grovel your gratitude. But it doesn't encourage investment in autism research that fund acknowledgement in our field is only 36%. Conversely, is donor anonymity respected when it's asked for?
How do we define failure? It could even be cancellation:
- for tardiness (not starting for six months, say)
- because the work turns out to be badly designed, of poor quality or demonstrably not going anywhere
- or if key personnel leave
Funders see themselves as stakeholders who want to be kept informed as to progress - good or bad. So do not fear going back and asking for an extension if that's what is needed on an otherwise good project.
* * * * * * *
Autism – which blurs all social codes – certainly provides a Grand Challenge. Research is humbling. Each new finding has to be independently verified if it's to advance knowledge created in the past. Each will similarly be subsumed or overtaken by others. Every new finding seems to raise new questions, almost widening the gaps in our knowledge. It's a shared voyage of discovery whose purpose is to inform action.
New treatments are being tried all the time, but research has not shown that they work better than placebo. Nor if they are safe. It's important to have a concerted and vigorous effort to benchmark interventions, perhaps tailored to unique sub-sets of autism populations. Is it one disorder or are there many separate but related disorders?
It seems to me that more research, much more research, needs to be focussed on what the social workers call "the hard end". Thinking back to my Giles, researchers and ethics bodies must find better ways to study children and adults unable to give informed consent. We need always to distinguish between subject assent, parental permission, legal authority and moral responsibility.
I believe we need more work on autism gender issues. A 2010 Swedish study showed females to have a significantly higher mortality rate. How does that come to be?
I'd also like to see projects addressing why so many people with autism find the sensory world impossibly difficult to manage, and what can be learnt from their sometimes extraordinary responses to tried and tested medications.
* * * * * * *
Hope for the autism community lies in quality, peer-reviewed, research into the nature, diagnosis, causes and treatment of autism. Autism research calls on different skills so there's potential for many of us to have the beautiful but frightening excitement of being the first to know something.
The success of this conference, with speakers having different perspectives and new ideas, depends on your attendance and attention yes, but also on the unstructured discussions between people of different disciplines and cultures, which take place outside of the formal sessions. Engagement leads to learning and sharing. To thinking outside of the box.
* * * * * * *
The laboratories of the 21st century are in partnerships, alliances, associations, affiliates, consortia, networks, joint ventures.
Progress will accelerate as people work cooperatively rather than competitively; and as the pharma get more involved.
Excellent models from other sectors show how research collaboratives can accelerate the pace of discovery. Despite the vastly different fields, the basic journey is generic:
discover – gather – analyse – create – share.
Ladies and gentlemen, it is always a privilege for me to interact with researchers passionate about their roles and the future. I have infinite faith in science and its advance and wish you all success in your projects.
I thank the Society for this recognition and hope that my commitment will encourage others. Will anything come of my advocacy? Who can say?
Nothing can guarantee progress because research cannot be rushed and even with the best of planning, there's only a one in ten chance of any particular project making any difference.
But what I do know is that it's worth trying and there's nothing I would rather have done.
Thank you all.
Copyright May 2013
Dame Stephanie Shirley
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