Woman and baby together being observed by webcam

The urgent need for greater investment in autism social care research

Autistic adults are too often left behind and current research does not provide long-term solutions. We must urgently invest in practical social care research to improve this vulnerable community’s health, wellbeing, and quality of life, and to save their lives that are being lost too soon.

Woman and baby together being observed by webcam

Bluntly, too few funders support social care research leading to few researchers focusing on it. As a result, we have very little high-quality evidence about how best to support autistic adults to live happy, fulfilling and autonomous lives. This is why we at the CareTech Foundation are delighted to be supporting the new Social Care Action Fund, established by Autistica and supported by the National Institute of Health Research (NIHR).

Research clearly shows that autistic people often face poor mental and physical health throughout their lives, much higher rates of early death, one of the highest rates of unemployment in society and limited social inclusion. The half of autistic people who have a learning disability are more likely to die young, have a reduced quality of life and live with multiple conditions, such as epilepsy or ADHD.

Despite often having a high level of support needs, there has been a historic under-investment in autism social care research. This is particularly true for autistic people who also have a learning disability; despite their greater needs, autistic people with a learning disability account for only 6% of autistic research participants.

The Social Care Action Fund, supported by Autistica’s reputation and track record for funding research that leads to tangible outcomes, and paired with the NIHR’s world-leading peer review process, will ensure only the highest quality projects most likely to have a practical impact are funded. The research supported by the Fund aims to identify ways to ensure autistic people are at the heart of decisions about their care, and that services are personalised, safe and effective.

The CareTech Foundation’s support for the Fund fits well with our support of Birkbeck University of London’s world-first ToddlerLab research facility. Using cutting-edge technology more usually seen in Hollywood studios, ToddlerLab will enable breakthroughs in the understanding of the development of autism and other behavioural conditions by allowing researchers to study toddlers while they engage in games and other everyday behaviours. The research could lead to new interventions, transforming the outlook for people with these conditions.

The CareTech Foundation is honoured to support the Social Care Action Fund and to be able to lend our expertise to the chosen research projects. Beyond this, we hope that this powerful new funding stream will attract other investment and stimulate the long-term growth of a research community in this key field.

Developing practical solutions to improve care provision for those with autism, especially those with learning disabilities, is essential. We cannot allow ignorance to lead to poor care outcomes for autistic people.

More details of the Social Care Action Fund and how to apply are available here

More details of Birkbeck University of London’s ToddlerLab are available here

First published by Care Agenda