The University of Leicester is leading on a national study to calculate the number of adults with autism, it has been announced today.
Professor Terry Brugha, Professor of Psychiatry in the Department of Health Sciences is spearheading the study in conjunction with a team of research experts including the the National Centre for Social Research (NatCen), Research Autism and Professor Simon Baron-Cohen of the Autism Research Centre. It will report in 2009.
Care services Minister Ivan Lewis announced an additional investment of £500,000 for Government research into the numbers of adults with autism and their specific transitions needs. This prevalence study will inform the first ever Government strategy on adults with autism and Asperger's syndrome.
The number of children with autism is as high as 1 in 100 (according to studies by Prof Howard Meltzer of the University of Leicester and Prof. Baird's 2006 study). The new prevalence study now underway will give the first ever accurate picture of how many adults have the condition. Part of the new research will focus on the period of transition to adult life and will inform service planning for adults with Autistic Spectrum Disorders (ASDs). This will be led by Prof. Baird and it will examine the lessons and challenges in the transition process and focus on areas such as mental health, social care, housing and further education needs.
Professor Brugha is Director of Research, Department of Health Sciences, University of Leicester and Honorary Consultant Adult General Psychiatrist, Leicestershire Partnership NHS Trust. He operates an NHS assessment clinic for adults who may have Autism Spectrum Disorder and liaise with adult mental health services throughout Leicester and Leicestershire, also providing training to professional staff and teams.
His area of research is psychiatric epidemiology in adulthood. He is also currently developing and testing methods for the prevention of depression.
Professor Brugha said: “This will be the world’s first ever study looking at the number of adults in the community who have an autism spectrum disorder.
“There is growing recognition that this is a group of people with unrecognised ‘invisible’ needs but who also often have strengths to offer to society that go largely untapped.
“The cost of autism in Great Britain in children and adults has been estimated to run into many billions of pounds some of which may be due to unnecessary economic inactivity and also dependency on services that do not know how to recognise and support their needs appropriately.
“The survey involves interviews and examinations of a random sample of people who may have the condition and where possible the collection of information from family and carers. Statistical methods are then used to summarise the data and estimate how many people have the condition and what are their circumstances. The results will appear in published reports for the government, public health and local health and social care services and articles in scientific journals. The Government has stated that the information will be used to develop a national plan to support these people.”
Ivan Lewis said: "Adults with autism and Asperger's syndrome are too often abandoned by services with their families left to struggle alone. Equally, people are frequently misappropriately referred to either mental health or learning disability services
"This study will inform the development of a national strategy designed to ensure that adults with autism and Asperger's syndrome are supported to have full lives."
"We still don't know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families. One of the key gaps in our knowledge is simple - we don't know how many people have the condition in any given area. That is why I am ordering a study to address this. "
The prevalence study will make use of new data collected in 2007 by NatCen and Professor Brugha’s team to record the number of adults with Asperger's syndrome and high functioning autism. There will also be an additional part to the study on the number of people with autism who have more complex needs and learning disabilities. The aim of the combined research will provide good epidemiological information in terms of prevalence and the characteristics and problems of this group.
This work, including research into transitions, is being commissioned and funded jointly with the Department for Children, Schools and Families. An autism expert will be appointed within the Department of Health to take both studies forward.
Mark Lever, chief executive of The National Autistic Society said: "We warmly welcome today's announcement from the Department of Health. Through our I Exist report, adults with autism told us they feel isolated and ignored, we are therefore delighted that the government has listened and is taking action . The Government has committed to establishing an autism specialist post and to undertake research into the number of adults with autism. We hope this will mark a turning point in the way that the needs of people with autism are recognised and met."
CONTACTS: For more information, contact Professor Brugha at 0116 258 4395.
Notes to Editors
1. The transitions research will focus on young peoples' experiences, including their mental health needs, their social care and housing needs, further education needs, opportunities for leisure and access to transport, and the ease of access to services. Transition planning was highlighted in the Children and Maternities National Service Framework and we wish to identify good practice as well as barriers experienced in accessing provision.
2. For both parts of this research, the teams to bring together a number of researchers and practitioners who are highly eminent in the field of autism and who have already made a substantial contribution to our understanding and treatment of individuals with Autism Spectrum Disorders (ASDs).
3. The announcement comes after the NAS I Exist campaign revealed a desperate reality where 63% of a small group of adults known to have autism do not have enough support, with at least 1 in experiencing severe mental health difficulties due to a lack of support. With 40% living at home and being almost entirely dependent on their families, the campaign report, I Exist, found a shocking 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.
DoH press Release: http://nds.coi.gov.uk/Content/Detail.asp?ReleaseID=366876&NewsAreaID=2
National Autistic Society Press Release: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=824&a=16356