About Us

THE LAUNCH OF AUTISM SPEAKS IN THE UK – MARCH 9 2006

Why is more funding needed for autism research?

Determining and understanding the causes of autism is an essential precursor to developing effective educational, social and medical responses that predictably and consistently improve the quality of life of those affected; and rigorous, evidence-based, peer-reviewed research is the only way to achieve this essential understanding.

Current estimates suggest that 1 in c.166 people worldwide has an autistic spectrum disorder (ASD). There are estimated to be around half a million people with ASD’s in the UK. If the families of people with an ASD and those who help to care for, teach and support them are taken into account, perhaps 1 in 20 people is directly touched by autism.

Yet autism is one of the least researched disorders. Despite its prevalence and the high cost of supporting people with autism, it attracts less than 1% of state medical research funding even in developed countries such as the US and UK. However this limited funding - coupled with advances in understanding of particularly the human genome and neuroscience underpinned by state-of-the-art computing and imaging technology - is yielding evidence that accelerating autism research could transform our understanding of autism and lead to the more effective interventions and treatments so much desired.

What is autism?

Autism is a complex brain disorder that significantly impairs a person’s ability to communicate, respond to their surroundings and form relationships with others. First identified more than 50 years ago, autism is typically diagnosed by the age of two or three (later for Asperger’s syndrome) and lasts a lifetime, without remission. It affects people of all racial, ethnic and socio-economic backgrounds, although boys are affected at four times the rate of girls. Autism is considered a spectrum disorder because symptoms and severity vary from individual to individual, ranging from those with no speech and limited cognitive ability to those of high IQ and typically highly-focused interests and abilities.

The exact cause or causes of autism are at present unknown, although scientists believe that there is a genetic component or predisposition to autism (the probability of both twins being affected is very much higher where these are identical rather than fraternal). Also unknown is the effect, if any, of environmental influences. There are no biological markers or specific medical treatments for autism and diagnosis is still based solely on observed behaviours.

Levels of autism appear to be rising, but it is unclear at present whether this is as a result of improved identification and diagnosis or whether there are other factors involved.

What is the impact of autism?

The economic impact of autism is only now beginning to be assessed. Research published in 2001 and now being updated suggests that the cost to the UK of autism exceeds £1bn per year, with the average additional lifetime costs for living support and education being estimated at nearly £3m per person. Given limited state provision, much of this burden falls in effect upon the families of people with autism, who must find for themselves the necessary financial and service support, much of it provided by the charitable sector.

The emotional impact of autism can be devastating for the families of those affected, and even in the case of high-functioning people with autism such as those with Asperger’s Syndrome levels of mental health problems and depression are high as individuals struggle to cope in everyday society. Many adults with an ASD have been (mis)treated for conditions such as schizophrenia because of inaccurate diagnosis. Whilst autism is not a disease and there are those who argue that people with autism should be regarded simply as different rather than disordered, there is plentiful evidence of the very real distress that autism causes.

What is Autism Speaks in the UK?

Autism Speaks is the new name of the National Alliance for Autism Research UK, a charity set up by Dame Stephanie Shirley in 2004 to act as a catalyst in increasing the funds available for biomedical autism research in the UK. Through The Shirley Foundation, Dame Stephanie has already committed over £35m to autism projects and has successfully established and then spun off a number of charities providing educational and supported living services for children and adults with autism.

Autism Speaks’ primary objective is to raise funds in the UK to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected. It is the first organisation with this specific causal focus in the UK and as such is complementary to existing autism charities that provide support services for people with ASD’s and their families and those that lobby for better recognition, education and support. It also complements the very small number of charities in the UK that sponsor or conduct research into autism, largely through seeking more effective interventions. During its first year of activity NAAR (UK) has developed strong links with these organisations and is working actively and collaboratively with them.

What is Autism Speaks in the US?

Dame Stephanie was prompted to establish NAAR (UK) as a result of the success achieved by the well-established National Alliance for Autism Research, a US-based charity to which NAAR UK was initially affiliated. NAAR US was the oldest and largest non-governmental organisation in the world dedicated to funding biomedical autism research. Established in 1994 by parents of children with autism concerned about the lack of research funding, NAAR successfully brought the disorder to the attention of clinical and basic scientists and funding agencies worldwide.

At the end of January 2006 NAAR merged with Autism Speaks Inc, a new charity co-founded by Suzanne and Bob Wright in February 2005 in response to the diagnosis of their grandson. Bob Wright is chairman and CEO of NBC Universal and is vice chairman and executive officer of General Electric. The organisation's guiding principles have been to raise public awareness about autism and its impact on individuals, families, and society, and to raise funds to support effective biomedical research in autism. In the year since its launch Autism Speaks Inc has raised more than £15 million.

What has Autism Speaks achieved?

To date, NAAR and Autism Speaks have committed more than $30m (£16m) to autism research, with even higher funding in the pipeline. NAAR in particular stimulated a significant increase in the funding given to autism research by the National Institutes of Health, the principal public funding agency for medical research in the United States.

In 2004 NAAR launched the International Campaign for Autism Research, a £25m five-year collaborative programme of research aimed at discovering early detection tools and medical therapies that could vastly improve the lives of millions of families. This programme comprises a number of elements including the Autism Genome Project, the largest international research collaboration ever assembled to study the genetics of autism. A second project focuses on the infant siblings of children diagnosed with autism in order to identify behavioural and biological markers for the disorder, and to identify high risk children early enabling prognosis-improving intervention. A third project seeks to understand the unusual communication impairments of children with autism. The capacity of the research community to study autism is also stimulated through pilot projects and the mentoring of young academics by experienced autism researchers.

Autism Speaks has already funded and continues to fund a number of research projects in the UK, including those contributing to the Autism Genome Project and a collaboration between the Institute of Child Health in London and Massachusetts Institute of Technology. Other UK organisations that receive or have received funding include the Institute of Psychiatry at King’s College London, the universities of Cambridge, London and Aberdeen, the Open University, the Newcomen Centre, and the St. Thomas & Guy’s Hospitals NHS Trust.

Why fund more research in the UK?

A major review of autism research by the Medical Research Council (MRC) in 2001 and later work by the Institute of Child Health on behalf of the National Autistic Society (NAS) and Parents Autism Campaign for Education (PACE) in March 2004, and by The Shirley Foundation in November 2004, show that there is much more that could be done. The MRC was successful in winning an additional £2.75m of autism research funding from the UK government to supplement its own funding stream as a result of its 2001 report, but this is now fully allocated. Recent analysis shows that proportionally less research into autism is carried out in the UK compared to the United States, particularly through private funding, and that research is better co-ordinated in the US. Whilst studies that analyse symptoms to identify genetic and environmental risk factors are strong in the UK, there appear to be particular weaknesses in the UK (compared to other research communities) in relation to researching the causes of autism and interventions. Yet research into causes and interventions are the highest ranked priorities for both researchers and those with autism and their families in the UK and the rest of the world.

A number of key challenges in the field of autism research have also been identified relating to:

Ø establishing prevalence

Ø the need for early reliable diagnosis

Ø identifying susceptibility genes

Ø mapping differences in the autistic brain

Ø improving intervention and treatment

Ø sharing resources and information

Ø ethical considerations in childhood treatment research

Ø translating research findings into robust and reliable clinical tools

Ø engaging the biotechnology and pharmaceutical industries.

The UK has many of the world’s leading public and private research organisations and researchers, including a number of the world’s leading scientists specialising in autism, amongst them Autism Speaks patron Prof Sir Michael Rutter. The UK research community is able to respond flexibly to movements in funding and priorities, and is strongly positioned to increase its contribution to autism research as additional funding becomes available.

What is Autism Speaks working on in the UK?

Autism Speaks is both actively raising funds in its own right and seeking to stimulate increased funding from other sources including government and the private sector. At present, state funding for autism research in the UK comes primarily from the MRC with small amounts from the Biotechnology and Biological Sciences Research Council, the Economic and Social Research Council and NHS/DOH Research and Development. Private funding comes primarily from the Wellcome Trust and The Shirley Foundation, with smaller contributions from around half a dozen other charities. To date the pharmaceutical industry has dedicated relatively little research to autism, as the pharmaceuticals currently used to alleviate symptoms of autism such as depression or obsessive/compulsive disorder, address a wider range of conditions. However once the mechanisms of autism are understood, the pharmaceutical companies can be expected to show much greater interest in the development of treatments that are autism-specific.

Autism Speaks raises its own funds through fundraising activities such as its Walks for Autism Research, already well-established in the US, which help to raise awareness as well as generate income. Two large walks are in planning for 2006. Donations are also being sought from wealthy individuals, from charitable trusts and from corporate sponsors. In many cases this means persuading organisations to open new streams of funding, because autism research currently falls between the stools of pure medical research and social and educational support.

Equally important, however, is the work that Autism Speaks is undertaking to encourage trusts, charities and funding agencies to co-operate on supporting multi-year and perhaps multi-centre projects. It is a member of the Autism Research Co-ordination Group (chaired by the Department for Education and Skills), of the Mental Health Research Funders Group (chaired by the Department of Health) and of the Advisory Group to the All-Party Parliamentary Group on Autism.

In biomedical research robust assessment procedures are needed to ensure that research projects are subject to competition and that applications for research are appropriately reviewed. Autism Speaks has a well-established international scientific advisory board based in the US that acts as a peer review system to ensure that funding is only made available to research proposals that meet stringent criteria in terms of feasibility, quality, creativity and lack of duplication. Autism Speaks in the UK both relies on this board and takes advice from appropriately qualified advisers in the UK on UK proposals.

Autism Speaks seeks the views of those with autism, their families and the organisations that represent them to ensure that the research funded reflects their priorities as well as those of the research community. In return, Autism Speaks is already receiving their support in creating awareness of the need for and the benefits of research amongst politicians, policy makers, government departments and local authorities in order to stimulate additional state funding. Autism Speaks also communicates significant scientific advances achieved through its programmes to the widest possible audience, and acts responsibly in setting reasonable expectations for its research.

Why support Autism Speaks?

Autism Speaks is the first organisation to dedicate itself to increasing funding for biomedical research into the causes of autism in the UK. It is supported by key individuals in both the public and private sectors with an interest in seeing the social, emotional and financial impact of autism in the UK reduced. It is affiliated to the US charity that has been most effective in both raising funds and stimulating state support for autism research in the United States. It has well-established relationships with key funders such as the MRC and the Wellcome Trust, as well as with the leading autism charities such as NAS and Research Autism which focus on supporting those with autism and their families and on the effectiveness of interventions respectively. Its founder, Dame Stephanie Shirley, has dedicated her extensive philanthropy to first alleviating and then establishing the causes of autism.

In short Autism Speaks has the pedigree for success.

By increasing the funding dedicated to autism research Autism Speaks will allow the UK biomedical research community to play a significantly increased and distinctive role in determining the causes of autism, and through this in developing effective interventions. These may well have substantial spin-off benefits for UK institutions, organisations and companies.

What is the bottom line?

But the bottom line, and what drives Autism Speaks, is the challenge of improving the quality of life of all those affected by autism.