Levels of autism research in the UK fall way behind those of the US, finds new research published today by the Centre for Research in Autism and Education (CRAE) at the Institute of Education (IOE), London and King's College London's Institute of Psychiatry.
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.
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."
Professor Tony Charman, Chair in Clinical Child Psychology at King's College London's Institute of Psychiatry, 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".
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 report 'A future made together: shaping autism research in the UK' was launched today, 18 June, at a reception in the House of Lords.
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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 centre was established in 2009 with a mission to improve the research evidence for effective interventions, education and outcomes for children and young people with autism. We aim to produce research findings that will influence health and education policy and practice in the UK and internationally. CRAE is a partnership between the Institute of Education and Ambitious about Autism, the national charity for autism education.
The Institute of Education is a college of the University of London that specialises in education and related areas of social science and professional practice. In the most recent Research Assessment Exercise two-thirds of the Institute's research activity was judged to be internationally significant and over a third was judged to be "world leading". The Institute was recognised by Ofsted in 2010 for its "high quality" initial teacher training programmes that inspire its students "to want to be outstanding teachers". The IOE is a member of the 1994 Group, which brings together 11 internationally renowned, research-intensive universities. www.ioe.ac.uk
King's College London is one of the top 30 universities in the world (2012/13 QS international world rankings), and was The Sunday Times 'University of the Year 2010/11', and the fourth oldest in England. A research-led university based in the heart of London, King's has more than 25,000 students (of whom more than 10,000 are graduate students) from nearly 140 countries, and more than 6,500 employees. King's is in the second phase of a £1 billion redevelopment programme which is transforming its estate.
King's has an outstanding reputation for providing world-class teaching and cutting-edge research. In the 2008 Research Assessment Exercise for British universities, 23 departments were ranked in the top quartile of British universities; over half of our academic staff work in departments that are in the top 10 per cent in the UK in their field and can thus be classed as world leading. The College is in the top seven UK universities for research earnings and has an overall annual income of nearly £525 million (year ending 31 July 2011).
King's has a particularly distinguished reputation in the humanities, law, the sciences (including a wide range of health areas such as psychiatry, medicine, nursing and dentistry) and social sciences including international affairs. It has played a major role in many of the advances that have shaped modern life, such as the discovery of the structure of DNA and research that led to the development of radio, television, mobile phones and radar.
King's College London and Guy's and St Thomas', King's College Hospital and South London and Maudsley NHS Foundation Trusts are part of King's Health Partners. King's Health Partners Academic Health Sciences Centre (AHSC) is a pioneering global collaboration between one of the world's leading research-led universities and three of London's most successful NHS Foundation Trusts, including leading teaching hospitals and comprehensive mental health services. For more information, visit: www.kingshealthpartners.org.
The College is in the midst of a five-year, £500 million fundraising campaign - World questions|King's answers - created to address some of the most pressing challenges facing humanity as quickly as feasible. The campaign's five priority areas are neuroscience and mental health, leadership and society, cancer, global power and children's health. More information about the campaign is available at www.kcl.ac.uk/kingsanswers.
Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Its Information Centre is informed by world experts and accredited by the NHS Information Standard, an independent kite-mark of reliability and quality. It guides people through the minefield of interventions on offer, allowing them to make informed decisions based on impartial, factual information, including risks and hazards. Its research programme is derived from the priorities of autistic people and families and addresses areas that affect everyday life.