My interest in autism medical research began with a literary search to see where the science had got to. That was roundabout the millennium when Asperger’s syndrome was not considered to be part of autism. My charitable foundation then sponsored a series of relevant university studies (some seminal; others that died without trace).
Partly to inform myself, I had served as a trustee for some years on the board of the National Alliance for Autism Research in the States and what is now Autistica started as a subsidiary of NAAR’s successor.
Since my founding of Autistica in 2004, it has become the largest charitable funder of autism research in Europe. Its early work at Birkbeck and Manchester was on the development, starting in utero, of the baby siblings of older children diagnosed as autistic. And setting up Oxford’s Autism Brain Bank which (following the breakdown of the American Brain Bank) is now the largest in the world.
More recently, Autistica has moved to funding applied research – improving outcomes for autistic people through world-class research. With perhaps a bias towards adults since much of the previous research was on children. Indeed, Autistica is developing a number of services to support not just autistic children but adults right through to old age.
There have been 58 projects in 25 UK institutions; involving 47 researchers. The support includes recruiting 11,000 members of the Discover network which hosts global summits focused on areas that the autistic community believes urgently needs further research, so far: Physical health and wellbeing in September 2017; Autism and epilepsy in November 2017; and Autism-enabling environments in June last year.
Autistica is part of the James Lind Alliance Partnership setting up research priorities and an active member of the Association of Medical Research Charities. 40% of Autistica’s staff are themselves autistic – including the Science Director, James Cusack.
It’s important that autistic people should have the same chances in life as anyone else.
1 in 4 autistic people speak few words or are without speech (the politically correct term being the more positive “pre-speech”. Autistica’s language research is funding tools to aid understanding.
Over 70% of autistic people (children and adults) have mental health issues and Autistica is working on personalised therapies and lobbying for better services.
Just 16% of autistic adults are in full-time employment. Autistica’s DARE project brings together autistic people and potential employers in order to improve opportunities. Another of my foundation’s projects was to fund Adam Feinstein’s three-year employment study – which led to Routledge publishing Autism Works.
Some 30-40% of autistic people are also epileptic and a similar percentage of epileptic people are also autistic. In partnership with epilepsy charities, Autistica aims to find out why this is and so develop better treatments.
Impressive! But there is more to come. Via Researchfish, Autistica will soon be starting to report regularly on the impact it is having. By 2021, its impact metrics will be good enough to be incorporated into its Annual Reports. By 2022, the charity aims to launch a fund to cover open-access fees to Autistica-funded publications. And follow this with its updated impact plan.
For more information please go to: www.autistica.org.uk.
She retired in 1993 to concentrate on philanthropic work, since then she has given away at least £68 million of the estimated £150 million wealth she built after selling her IT firm. She continues to give to a range of causes including autism research.