The research, undertaken on behalf of Research Autism, found that the US spends an average of 18 times the amount the UK does on autism research in accordance with population size. The US spent the equivalent of £75.79 per person with autism in 2010, while the UK spent just £4.26.
US research is also relatively evenly distributed across a range of autism areas, including diagnosis, support services and causes, whereas UK research is dominated by work on biology, brain and cognition, which makes up 53% of all autism research nationally.
Furthermore, the study found that autistic people and their families often felt excluded from the research process. Many said they had no say in how research projects are designed, conducted and publicised. They were especially concerned that the balance of research topics in the UK is gravely uneven and fails to match up to what they want for their or their families’ lives. For example, of more than 100 UK funded autism research projects between 2007 and 2011, only 21 explicitly included adults and just 11 focused specifically on adult needs.
Professor Tony Charman, Chair in Clinical Child Psychology at the IoP at King’s, said: “Without better strategic oversight and targeted investment the world class research into autism that is being done in the UK will not deliver the most benefit for autistic people, their families and society as a whole. The gap between the aspirations of the autism community and the research that is being funded and published in the UK is very wide and the research we have published today needs to act as a wake-up call for funding agencies and UK autism researchers.”
Dr Liz Pellicano, Director of CRAE, said: “As far as research in the UK is concerned, too often people with autism are treated as if their opinions don’t matter. This report shows that there is a huge gulf between what autistic people and their families would like to see, and what is actually being researched. We have to turn that around.”
“Most importantly, we need to listen to autistic people and their families. Research investment needs to reflect people’s everyday concerns. It needs to be refocused towards enhancing people’s life chances, understanding how they think and learn, and how we can develop public services that better serve autistic people and their families.”
Deepa Korea, Chief Executive of Research Autism, said: “Research Autism is delighted to have commissioned this important report into the state of autism research in the UK and beyond. The messages from the report are loud and clear – we need to listen to people with autism; we need better targeted investment; and we need a more co-ordinated approach to the delivery of autism research. This report represents a clear call to action for autism researchers and funders, and Research Autism looks forward to leading the way in ensuring that the recommendations in this report are implemented in the months and years ahead.”
The Research surveyed the funding portfolios of 20 UK grant-giving organisations for the period of 2007 – 2011 and analysed over 6,000 journal articles published in 2001 or 2011. More than 1,600 people responded to an online survey designed specifically for the project and more than 70 people spoke to researchers in-depth, either face-to-face or on the telephone.
The report ‘A future made together: shaping autism research in the UK’ was launched today, 18 June, at a reception in the House of Lords.
For further information, please contact Seil Collins, Press Officer, Institute of Psychiatry, King’s College London, email: [email protected] or tel: (+44) 0207 848 5377