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 focuses on four key areas of autism research: causes, treatment, diagnosis and the underlying biological basis of autism.

Autism Speaks directs funding to these areas through a range of competitive programmes including pilot projects designed to test new hypotheses about autism, mentored fellowships designed to attract the brightest young recruits to autism research; career development awards for experienced researchers, and programme grants for major studies in key areas. 

Autism Speaks also encourages scientists to work together by supporting a number of international collaborative programmes including the Autism Genome Project, Brain Bank for Autism, and the British Autism Study of Infant Siblings (BASIS).  Pooling effort and findings across larger groups of researchers in a number of countries speeds up the rate of discovery and ensures that research findings reach the widest audience as quickly as possible.

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 850 projects over the last ten years. In 2007, nearly 200 grants were made, including over 50 grants funding pilot projects, 31 fellowship awards, and 29 Family Services Community Grants.

Of the projects supported worldwide, more than 30 have been or are in the UK.

UK researchers are currently leading the second phase of International Autism Genome Project sponsored by Autism Speaks. Researchers in the UK are also active participants of the Autism Tissue Programme, where post-mortem brain tissue can be studied to identify differences in the autistic brain.

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.

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.