BACKGROUND BRIEFING FOR PRESS STATEMENTS & QUERIES - 2007
There are already a number of autism charities. Why the need for one more?
How does Autism Speaks choose the projects which it supports?
How much autism research is currently taking place in the UK/worldwide?
How does funding for autism research compare with other conditions?
How many individual projects is Autism Speaks supporting in the UK/worldwide?
How will research into the causes of autism help those affected by it?
What research objectives does Autism Speaks set itself and in what timescale?
Autism Speaks is linked to a larger US initiative. Why?
Will there be a miracle cure for autism?
What is autism?
Autism is a complex brain disorder that significantly impairs a person's ability to communicate, to respond to his or her surroundings and to form relationships with others. It is often characterized by restricted interests and repetitive behaviours. It was first identified as a distinct condition more than 50 years ago. Autism is typically diagnosed around the age of three and lasts a lifetime. It affects people of all racial, ethnic and socio-economic backgrounds, although boys are affected at four times the rate of girls.
Autism is described as a spectrum disorder because it is manifested by a wide range of symptoms of differing degrees of severity. At one end of the scale are those with no speech and reduced cognitive ability. At the other are people of high IQ, typically highly-focused interests and abilities but impaired ability to form social relationships. Asperger's Syndrome, in which speech and IQ are normal, forms part of the autistic spectrum but is usually diagnosed later.
Around 1% of school age children are now being diagnosed with autism spectrum disorder. There are estimated to be around 540,000 people on the autistic spectrum in the UK.
What causes autism?
No one knows with certainty. Finding the cause (or causes) of autism is one of the most challenging areas of medical science. The absence of a clear understanding about what causes autism makes finding effective therapies very difficult.
It is now widely accepted by scientists that a predisposition to autism is inherited. It is not clear why a genetic predisposition affects some family members and not others. Research is also taking place to establish the part played, if any, by environmental factors either prenatally or after a child is born. There are no biological tests to confirm a diagnosis of autism. Identification of the condition is still based solely on observed behaviours. Autism is no longer attributed, as it once was, to lack of affection in the child's mother.
Levels of autism appear to be rising but that may be the result of improved detection, identification and diagnosis.
How Common is Autism?
Autism is one of the commonest developmental disorders. Studies of large groups of children show that around 1 in 100 children is affected by autism, compared to 1 in 500 affected by cerebral palsy, 1 in 3,000 affected by cystic fibrosis and 1 in 4,000 affected by juvenile diabetes. Around 6,000 children receive a diagnosis of autism in England and Wales a year compared to an annual average of 1,300 diagnoses of childhood cancer including around 360 of childhood leukaemia.
What is Autism Speaks?
Autism Speaks is the only UK charity raising funds for biomedical research to determine and understand the causes of autism and was set up by well-known philanthropist and autism campaigner Dame Stephanie Shirley in 2004.
Autism is one of the most significant but least researched developmental disorders and Autism Speaks has set itself the task of achieving major research breakthroughs within ten years. It believes that the most effective interventions will come from a clear understanding of the causes and biological mechanisms of autism.
It is motivated by the knowledge that autism imposes an extremely heavy burden on those affected, those who care for them and, ultimately, on society.
Autism Speaks is a sister charity of the American charity of the same name. The initiative in bringing the American model to the UK was taken by Dame Stephanie Shirley in the belief that as the world’s biggest non-governmental funder of biomedical autism research, Autism Speaks in the United States has shown itself to be highly effective in raising funds and driving new research. The creation of the transatlantic link is intended to lay the foundation for a global organisation to address a global challenge.
What does Autism Speaks do?
Autism Speaks’ aim is to raise funds 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.
Autism speaks is pushing up the current levels of funding for autism research both through its own fundraising and by increasing the level of support from other major funders, public and private, raising their awareness of the huge impact of autism and how much resource is needed to address this effectively.
There are already a number of autism charities. Why the need for one more?
Most autism charities provide support and services for those affected by autism and their families. Only a small number promote or conduct autism research, primarily into the effectiveness of interventions. Prior to the creation of Autism Speaks in the UK none focused on research into the causes of autism.
How does Autism Speaks choose the projects which it supports?
Autism Speaks is committed to facilitating research that will uncover the causes of autism and develop effective biomedical treatments. We are committed to researching all potential causes of autism and we invite researchers to submit grant proposals covering a wide spectrum of ideas and disciplines.
All research proposals are submitted to rigorous scrutiny by expert scientists and only the best are funded.
Autism Speaks focuses on three particular areas:
Pilot studies that establish whether new ideas and hypotheses are soundly based are critical to attracting larger, multi-year grants from other medical research funding organisations. Such groups fund projects only when preliminary data has been compiled that suggests additional research may break new ground in a particular area of study.
Mentor-based fellowships support and encourage the development of young scientists who benefit from the mentorship of prominent autism researchers, helping to attract and then keep the brightest and best talents in autism research. Investment in autism research training helps to build capacity as many of our fellows later assume teaching roles and join departments around the world which currently have no representation in autism research.
Collaborative programmes and research consortia unite scientists working towards a common goal and speed up the rate of discovery. Autism Speaks supports collaborations and consortia in a number of areas of autism research working with both private and public funders. These include autism genetics (through the International Autism Genome Project); neuroimaging studies that analyse differences in the structure and functioning of the brain in people with autism; studies of the younger siblings of children with autism who are at higher risk of also being affected; and studies of human brain tissue.
How much autism research is currently taking place in the UK/worldwide?
Autism Speaks estimates that in 2007 around £3m from all sources was spent on autism research in the UK. This is less than the extra lifetime costs incurred by one person with autism and equates to £6 per person with autism per year.
General research developments in the fields of neuroscience, neuroimaging and genetics are also relevant to autism.
The main centres of autism research worldwide are in the US, UK, Canada, mainland Europe (particularly Scandinavia, Germany and Holland), Japan, Australia and Israel.
How does funding for autism research compare with other conditions?
Levels of funding for autism research compare very badly with other disorders of childhood or with similar prevalence.
For example in England and Wales around 6,000 children are diagnosed with autism each year…..yet the total spend on autism research in 2007 was around £3m, some £500 for each child diagnosed. Just over a quarter of these (c.360 p.a.) are for childhood leukaemia.; Yet total research expenditure on autism was no more than £m in 2005 - some £333 for each child diagnosed. The single charity Children with Leukemia spends around £7m p.a. on research, nearly £20,000 per child diagnosed.
Cystic fibrosis occurs in 1 in 3,000 live births compared to around 1 in 100 for autism giving a diagnosis rate of 215 p.a. in England and Wales.; In total it affects 7,500 people in the UK compared to over half a million with autism.; Yet the Medical Research Council's annual spend is about the same for both at around £1.5m and the Cystic Fibrosis Trust spends around £4m a year on biomedical research - an expenditure of £18,500 per child diagnosed.
How many individual projects is Autism Speaks supporting in the UK/worldwide?
Worldwide Autism Speaks has supported nearly 300 projects over the last ten years. In 2006 124 grants were made in total including nearly 100 under the Pilot Project and Mentored Fellowship schemes Of the projects supported worldwide, more than 30 have been or are in the UK with eleven new grants awarded during 2006.
UK scientists are currently leading the second phase of International Autism Genome Project sponsored by Autism Speaks.
A number of proposals for major research projects in the UK are currently in development.
How will research into the causes of autism help those affected by it?
It is already known that certain behavioural and educational interventions do benefit some children with autism and it is generally thought that the sooner they begin the better. Autism Speaks believes however that if we do not understand the biological mechanisms involved in autism then all interventions, and particularly biomedical interventions such as drugs or diet, are essentially experimental. If we do not understand why an intervention works for one child or person we cannot predict whether it will benefit another. If we can base interventions on a clear understanding of what causes autism they are more likely to be appropriate and effective for a larger number of those affected.
What research objectives does Autism Speaks set itself and in what timescale?
Based on our deepening understanding of the genetics of autism and of differences in the autistic brain, Autism Speaks believes that significant progress in determining and understanding the causes of autism will be made over the next ten years.
Research on the baby siblings of children affected by autism, who are known to be at higher risk, is bringing forward the point at which early signs of unusual development can be detected to around one year of age. This research has the potential for opening an early window of opportunity for effective intervention.
Autism Speaks in the UK has a particular objective to increase autism research capacity in the UK through the encouragement of additional fellowships and new senior academic positions.
If the main sources of money are big funders like Government and charities, how important is the contribution of individual supporters and events like the Walk for Autism Research?
They are vitally important, as funding through government and grant giving trusts will always be constrained by the many other calls on these funds. In its first ten years, the vast majority of funds raised by Autism Speaks in the US came from local fundraising. While Autism Speaks in the UK is working with other funders to accelerate autism research here more quickly we also need to show that we have the support of the autism community in the UK and events such as Walk for Autism Research are an opportunity for families to show this. They are also fun!
Research is also expensive and it is only by engaging as many supporters as possible in its funding that we will achieve the rapid results that so many people want to see.
Autism Speaks is linked to a larger US initiative. Why?
Quite simply, we believe that Autism Speaks provides the best model for tackling the under funding of autism research. The critical element for any charity raising funds for medical research is to ensure the quality of the research it pays for. The only way to do this is through a robust peer review process, involving the rigorous scrutiny of grant applications by expert scientists. Autism Speaks in the US has just such a process built up over time and engaging many of the world’s leading autism scientists. Through its partnership with the US initiative Autism Speaks in the UK is able to share and contribute to the peer review process, which can also be offered to other potential funders. The excellence of this process has contributed significantly to the development of high quality autism research worldwide.
Some people with autism and their families are concerned that research into the causes of autism will lead to pressure on them to prevent or cure what some regard simply as a difference rather than a disorder. What is Autism Speaks' position on this?
Our focus is on understanding what causes autism. Without that understanding people cannot make informed choices about what interventions may be helpful and appropriate to their particular circumstances.
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 autistic spectrum disorder have been (mis)treated for other conditions 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.
Will there be a miracle cure for autism?
We already know that autism is a complex disorder and that it is unlikely to have a single or simple cause. Whilst ‘eureka’ moments in medical research do occur, progress in understanding and treating autism is much more likely to come from an accumulation of knowledge and understanding.