Over 100 politicians, academics, parents and individuals affected by autism, journalists, supporters and official contacts gathered in Dean's Yard at Westminster on 25th April to celebrate the official launch and early achievements of Research Autism.
Our flagship online resource is now live at www.researchautism.net. This is the world's first comprehensive, impartial validation of the effectiveness of interventions on offer for autism, as evaluated by leading experts. It is intended to be a 'trusted voice' for the many thousands affected by autism, enabling families to be more in control of their decision-making, and health professionals more confident when giving advice.
The Secretary of State of Work and Pensions, Rt. Hon. John Hutton MP lent his support to the organisation.
He gave by giving a compassionate speech acknowledging the enormous scale of the issues facing the autistic community, and the importance of both early intervention and providing tailored support.
He said the inability of many people on the autistic spectrum to fulfil their potential was 'a bodyblow to society' as well as a tragedy for the individuals involved.
Research Autism Chairman Geoffrey Maddrell emphasised how desperately we need more investment in research into interventions, citing the enormous gap between the cost of autism on society and the 'pitiful' amount spent on research.
Geoffrey spoke with much conviction on the enormous challenges that still face families when they are initially given a diagnosis of autism for their child: often left to do their own research, they find millions of search engine entries but remain in the dark as to what is the way forward.
Aspiring to make the enormous breakthroughs that have been made in the field of cancer research, Research Autism is determined to build up a body of knowledge based on world-class quality research to make a real difference to the thousands affected by autism.
Having heard the serious need for more research, it was left to Jacqui Jackson, well-known mother of seven children, five of whom are of the autistic spectrum, to add her personal story of how important the work of Research Autism is to families who are looking for that 'trusted voice' when faced with conflicting advice or persuasive salespeople.
She told amusing and yet heartbreaking stories of the treatments that have been offered to her family over the years: from the expensive experiment with magnet mattresses to the recipe for boiled chicken feet (with an accompanying dead chicken in a box in the post).
Jacqui explained that she has chosen to be a Trustee of Research Autism because she believes passionately in providing impartial scientific information to parents in an online format, accessible in the middle of the night or day.
Whilst going through the features and structure of the new website, Professor Chris Cullen, co-Chair of Research Autism's Scientific and Advisory Committee and a clinical psychologist at North Staffordshire Community Health Trust, spoke of the importance of continuing to initiate and fund new research work where gaps in our knowledge are identified.
In many cases, it is impossible to evaluate the effectiveness of an intervention because no research has been done to evaluate it.
Professor Cullen also stressed that Research Autism is not here to say that one treatment is "the answer".
The key point is that we are providing parents and professionals with scientific validations of the evidence to inform their own decision-making.
As well as the new website, Research Autism was able to use the occasion to launch its first Research Report based on the outcomes of the University of Southampton's SCAmP project, as carried out by Professor Bob Remington and Richard Hastings.
The project was a follow-up study to evaluate the effectiveness of Early Intensive Behavioural Intervention (EIBI), following up the progress of children who had undergone EIBI as pre-schoolers, compared to those whose parents had chosen to follow the normal support on offer from their LEA. The findings were very positive, indicating that the EIBI group had benefited considerably from the intensive tutoring.
There was considerable media interest in the SCAmP findings in the following day's press, with large articles appearing in the Telegraph, Guardian, Times and BBC online. Regional press have shown a lot of interest, and GP magazine (read by 65% of GPs) published an excellent piece on the website.
More about the SCaMP Project
In the coming months, the Research Autism team will be following up on lots of post-launch opportunities that have arisen out of the even.
We hope that all who attended were able to sense both our pride in our early achievements, and our determination to do even more.