Autistica - Autism Research and Campaigning

Autistica is the UK’s leading autism research and campaigning charity, working to ensure autistic people can live happier, healthier and longer lives. It serves autistic people of all ages, their families, and the wider ecosystem of clinicians, employers and policymakers whose decisions affect autistic lives, with a research programme that spans mental health, physical health, education, employment and public attitudes. Rather than positioning itself as a direct service provider, Autistica works upstream — funding studies, building evidence, and translating findings into tools and campaigns that others can use.

The charity was founded in 2004 by Dame Stephanie Shirley, a technology entrepreneur whose son Giles was autistic and died in 1998 at the age of 35. That loss shaped the organisation’s founding purpose: to close the gap between how little was understood about autistic health and wellbeing and how much difference better evidence could make. Dame Stephanie built her flagship philanthropic project around this aim through the Shirley Foundation, and remained associated with Autistica until her death in August 2025. The charity states that research spending on autism remains strikingly low relative to prevalence — it cites a figure of around one in 68 UK residents being autistic against annual research spend of only £6.60 per autistic person — and frames its own work as a direct response to that shortfall.

Autistica’s research agenda is set in partnership with autistic people rather than imposed from outside. Community input comes through structures such as the Autistica Network and the Autistica Insight Group, and the charity reports that the large majority of autistic people it has surveyed want to take part in research that could shape future services. Priority areas include anxiety and mental health support, physical healthcare — including work on tailored health checks — and the long-standing employment gap facing autistic adults, which the charity has set out to narrow through evidence-based workplace tools. It also funds work on accessibility of public spaces and on shifting public attitudes and stigma, treating these as legitimate targets for research rather than purely a communications exercise.

Alongside funding studies, Autistica has built a small number of practical resources drawn from that research base. These include the Autistica Tips Hub, a free app collecting evidence-based, practical tips for autistic people and those who support them; Molehill Mountain, an app for self-managing anxiety aimed at autistic users; and the ICF Toolkit, a personalised assessment tool intended to capture an individual’s strengths and support needs rather than relying on a single diagnostic label. On the employment side, the Neurodiversity Employers Index gives organisations a way to assess and benchmark their workplace inclusion practice, sitting alongside the charity’s stated ambition to help increase the autistic employment rate.

Campaigning and policy work run in parallel with the research programme. Autistica has run initiatives such as Break The Cycle, aimed at breaking patterns of poor outcomes across autistic people’s lives, and takes part in awareness moments such as World Autism Acceptance Month, using these as vehicles for evidence-led public engagement rather than one-off publicity. The charity also publishes policy briefings intended to influence decision-makers on health, education and employment issues affecting autistic people, and describes a set of long-term goals to 2030 that were developed with autistic community input covering areas such as employment, access to support and public understanding. Membership of the Association of Medical Research Charities situates Autistica within the broader UK medical research charity sector, distinguishing its work from that of service-delivery or campaigning-only organisations.