Frequently Asked Questions
There are already a number of autism charities. Why the need for one more?
How does Autistica 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 Autistica supporting in the UK/worldwide?
How will research into the causes of autism help those affected by it?
What research objectives does Autistica set itself and in what timescale?
Will there be a "miracle cure" for autism?
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 Autistica none focused on research into the causes of autism.
How does Autistica choose the projects which it supports?
Autistica seeks to use biomedical research to bring benefits to individuals and families affected by autism spectrum disorders. We support all areas of research that will help us to achieve this mission 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 those demonstrating the highest level of scientific quality are funded.
Autistica 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 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. Autistica supports collaborations and consortia in a number of areas of autism research working with both private and public funders.
How much autism research is currently taking place in the UK/worldwide?
Autistica estimates that around £5m from all sources is currently spent per year on autism research in the UK. This is equivalent to the extra lifetime costs incurred by just one person with autism and equates to £10 per person with autism per year.
The highest spender on autism research is the United States where around £150m is currently spent annually, split 75:25 between public and private funders.
Developments in the fields of neuroscience, neuro-imaging and genetics are also relevant to autism.
The main centres of autism research worldwide are in the US, UK, Canada, 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 compared with an annual average of 1,300 childhood diagnoses for all forms of cancer. Just over a quarter of these cancer diagnoses (c.360 p.a.) are for childhood leukaemia. Yet UK research expenditure on autism was no more than £5m in 2008 - a tiny fraction of the £500m total spend on cancer research. The single charity that funds research into childhood leukaemia spends around £7m p.a. on research, nearly £20,000 per affected child.
Cystic fibrosis is much rarer than autism affecting some 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 £2.5m and the Cystic Fibrosis Trust spends around £4m a year on biomedical research – an expenditure of £300 per person per year compared to £10 per person for autism.
How many individual projects is Autistica supporting in the UK/worldwide?
Autistica is currently supporting a number of key projects in the UK, including research into the genetics of autism through DNA analysis and twin studies, how autism develops in the young child, how the brain differs structurally and functionally in people with autism, and differing sensory responses in people with autism. The charity issued its first open call for proposals in July 2009.
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 that the sooner they begin the better the outcome. However these interventions require significant input from both the family and professionals and do not help all children. Autistica believes 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 Autistica set itself and in what timescale?
Based on our deepening understanding of the genetics of autism and of differences in the autistic brain which have advanced rapidly over the last five years, Autistica believes that significant progress in determining and understanding the causes and biological basis of autism will be made over the next ten years.
Research on the baby siblings of children with autism is also helping us to understand how autism develops in the young child, making detection and earlier effective intervention possible. Autistica has a particular objective to increase autism research capacity in the UK through the encouragement of additional fellowships and new senior academic positions and to build collaborations and research infrastructure (such as biological samples) that maximise the value of the research conducted.
Will there be a miracle cure for autism?
Although much loved by the media the term "cure" is increasingly seen as irrelevant in complex disorders such as autism that do not have single or simple causes. The aim of research is to develop a level of understanding of autism that will ensure that appropriate and effective interventions and therapies are available to those that will benefit from them.
