Autistica is the UK’s national autism research charity. In a 2016 report, Personal tragedies, public crisis, the charity demonstrated that Autistic people are at 2.5 times increased risk of premature death from virtually all causes, resulting in an average life expectancy 16 years lower than the general population. Autistic people also have notably poorer and mental and physical health outcomes than the general population.
In light of this evidence, the Peter Sowerby Foundation awarded Autistica a major grant of £454,256 to support The Sowerby Health Intervention for Autistic People (SHAPe) study.
Co-ordinated by Dr James Cusackand and a consortium of university researchers, the study aims to facilitate annual GP health checks for autistic adults to improve primary health access and address mortality and co-morbidities of people with autism and other cognitive conditions. This includes plans to develop an autism-specific health check in consultation and a pre-appointment digital tool that will overcome the difficulties that autistic people have in processing questions quickly in stressful environments, improving interaction with clinicians.
An additional grant of c.£70,000 will then be used to support campaigning and lobbying work to influence the development of national government policies in this area in order to ensure that the results of this study are rapidly adopted by the NHS.
To date, the following landmark achievements have been reached:
• Autistica has hosted a two-day Global Ageing and Autism Summit attended by 39 delegates from the UK, Europe, Australia and USA which led to the identification of 11 research concepts and the publication of a new report in Autism in Adulthood.
• The Newcastle University team undertook a comprehensive review of the barriers preventing autistic people from accessing primary care, as well as what can facilitate this access. Surveys and interviews gleaned further insights, including that anxiety before and during an appointment and sensory sensitivities in waiting rooms can prove challenging for autistic people, and that some clinicians are not confident in their knowledge of autism.
• Autistica has worked closely with NHS England and the Department of Health & Social Care to make healthchecks for autistic people a key deliverable in the NHS Long Term Plan and national autism strategy. They have been closely involved in NHS efforts to improve data collection needed to underpin the successful roll-out of a future healthcheck.
• The charity has built a wide coalition of support backing the introduction of healthchecks, including all major autism charities, the Royal College of General Practitioners, politicians, civil servants, NHS staff and commissioners
Autistica is redefining the role of small research charities. Its campaigning and lobbying has transformed the autism landscape, placing its core issue of early mortality at the heart of UK and international policymaking and leading to autism becoming an NHS clinical priority alongside cancer, heart disease and mental health.