Autism Speaks UK Visits House of Commons
Autism Speaks UK held its second annual reception at the House of Commons in London on May 23, 2007. Dame Stephanie Shirley, founder of Autism Speaks UK, addressed the crowd of scientists, doctors, parents and members of Parliament, sharing highlights from the past year and challenges for years ahead.
Among the accomplishments cited by Dame Stephanie was the leadership of Oxford University researcher Tony Monaco, who along with Anthony Bailey, also of Oxford, are guiding the second of the Autism Speaks-sponsored Autism Genome Project. She also noted the sponsoring role of Autism Speaks cited by many of the 200 autism researchers who gathered at a UK meeting earlier in the month.
In addition, Dame Stephanie pointed to the active role UK researchers are playing in a global epidemiological network, as well as the collaborative work between UK and North American behavioral and neuroscientists in the study of infant siblings of children with autism.
Among the challenges Dame Stephanie posed to the gathering were to account for the rapid rise in the autism incidence rate, to collaborate on diagnosis research, and to understand the disorder better and identify the genes responsible.
Dame Stephanie closed by encouraging all those in attendance to become activists and demand and answer to the big question – what causes autism?
Dame Stephanie Shirley Speaks at House of Commons
The following are remarks presented by Dame Stephanie Shirley, Founder of Autism Speaks UK, on May 23, 2007 at the House of Commons.
The timing is perfect to report on progress in autism research, as the 2007 International Meeting for Autism Research was only a couple of weeks ago in Seattle. This attracted more than 900 scientists, clinicians, psychologists, psychiatrists, geneticists, neuroscientists, educators and parents from more than 30 countries around the world.
Now you may think UK researchers would have found this sufficient, but no – nearly 200 delegates assembled at the Open University just the following weekend to report progress on research here – many acknowledging the sponsoring role of Autism Speaks.
It would be wonderful to tell you that there was some major breakthrough in our understanding of what causes autism or that consistent new ways of improving the quality of life for all those affected are just around the corner. But that’s not here yet. What does emerge from these meetings is that it’s the gradual and most importantly accelerating accretion of knowledge across many streams of research – genetic, neurological, psychological, biological – and insights that one lends to the other, that will solve the puzzle of autism.
Many of the findings reported are preliminary and researchers need either to work up the data more or wait for their study to be confirmed independently by others. But this is all part of robust scientific enquiry and is necessary to ensure research findings (and their interpretation) are based on solid ground. So from year to year, it can seem as though some areas of research are not advancing as fast as we’d like. But in reality it reflects that as preliminary findings are built on, probed and exploited, you and I can grow in confidence about their interpretation.
I spoke at the Open University about the major challenges to autism research and one of the things I called on researchers to do was not to duplicate research that has already been shown to be solid but also, vitally, to publish all results, including negative ones. It can be important to know that something didn’t work. As James Joyce put it “mistakes are the portal of discovery”.
But let me update you on how researchers are responding to the challenges we’ve identified:
The first challenge is to account for the apparently rapid rise in the number of people with autism. How much is due to more sensitive measurement and redefinition or is there a true increase in the disorder?
This year in Seattle Autism Speaks sponsored an International Epidemiology Meeting attracting representatives from over 20 countries. The goal is to encourage more rapid and accurate global epidemiological efforts through a network of researchers willing to standardise procedures and share data. Understanding what’s happening in different territories is vital to understanding potential causes – and pooling knowledge is the key to achieving this. I’m pleased to say that UK researchers are playing an active role in this network.
Our second challenge is that a major obstacle to progress is that diagnosis still relies on behaviour rather than basic biology. So how can we reliably diagnose autism as early as possible?
Much excellent work is now being done in studying the infant siblings of children with autism by networks of collaborating behavioural and neuroscientists in North America and the UK. These higher risk babies and toddlers are a vital source of information about the earliest signs of autism, language learning and the social brain. And where (sadly) a prognosis appears, they are the group in which we are starting to test the impact of intervening at the very earliest opportunity. We still have no biological markers for autism – we still do not know what it is as opposed to what it looks like – but we can look forward to translating what is being learnt into real benefits for families.
The third challenge to autism research is understanding whether there is one disorder or are there many separate but related conditions. How do we identify the susceptibility genes?
Collaborations such as the International Autism Genome Project and the Autism Genetic Resource Exchange allow large volumes of genetic material to be collected – necessary to evidence the susceptibility genes that are now emerging. Technology to “fine-map” genes means that we can predict rapid progress over the next couple of years and there’s a real sense amongst genetic researchers that they are at a tipping point of discovery. We’re of course very proud that Autism Speaks is a major sponsor of the Autism Genome Project and that the second phase of the research now underway is led by Prof Tony Monaco here in the UK.
My fourth challenge is what is different about the autism brain and what is the role of neuroimaging in understanding the clearly altered information processing of people with autism?
Prof Tony Bailey of Oxford University spoke in Seattle about the new imaging tools that allow us to study both abnormalities in neural function and differences between the way normally developing and autistic children process information.
But brain tissue research is also vital to understanding autism on a cellular and molecular level and this is hampered by a shortage of post-mortem brains.
The Autism Brain Atlas Project, funded by Autism Speaks, is the largest cohort of brain tissue from age-matched people with and without autism ever assembled. This is revealing meaningful structural differences in autism brains. But more must be done and we have plans to strengthen autism brain tissue research here in the UK in collaboration with the Medical Research Council and Oxford University.
Challenge 5 is how to bring research resources and information together in an integrated strategy?
Information and imaging technologies clearly have a vital role to play here and there are excellent models from other research sectors showing how research collaboratives have accelerated the pace of discovery. While we’re excited by the many streams of autism research now underway, there’s a risk that, like people with autism themselves, by concentrating too much on areas of behavioural, genetic, environmental or neurological detail, we may not see the wood for the trees. We need some new integrative, as well as detailed, thinking. And next January’s workshop on the neurobiology of autism (on which Autism Speaks is working with the Wellcome Trust) will be a key opportunity to stimulate this.
My penultimate challenge is how do we optimise current interventions and integrate new research into clinical applications. There’s a dearth of professionals able to advise families on both intervention and indeed general healthcare problems – often dismissed as being “part of the autism”. Vital clues to the nature of autism may be missed because we fail to see the significance of these associated conditions. State-funded health research in the UK is being restructured to emphasise the direct translation of laboratory findings into treatment trials. There’s scope for autism here, as the new programme grant to Prof Declan Murphy at the Institute of Psychiatry has shown.
The supreme challenge to autism research lies not in the research itself but in the vulnerability of the people that we study. Autism research must have integrity and we currently focus too much on high-functioning adults. Researchers and ethics bodies must find ways of studying children and low-functioning adults so that our understanding spans the full spectrum.
My personal mission is that the causes of the various autisms should be understood by 2012 and the global costs of autism spectrum disorders halved by 2020. Hugely ambitious aims that are frankly beyond the reach, and indeed the means, of the autism community. To achieve them we must engage the public. So far their engagement has been linked only to controversy such as MMR and mercury in vaccines. As study after study fails to establish significant associations, much money has been spent on reassuring the public, money that might have gone into work of greater real impact. But engage the public we must as we are one research area amongst many. Perhaps Prof Martin Knapp’s quite astonishing findings, the national cost of autism is £28bn a year, a figure reinforced by economic research in Australia, will be the catalyst we have been waiting for.
Ladies and gentlemen it would be wonderful if all of you here today: researchers, families, politicians, autism charities, even civil servants, were to join us in becoming activists in demanding answers to the Big Question of what causes autism. That way lies hope, lies funding, lies effective intervention, choice and ultimately a reduction in the enormous burden laid by autism not only on individual families but society as a whole.