Autism and Neurodiversity Research Funding

Gillian Keegan Excerpts

Tuesday 16th November 2021 Commons Chamber

[The Minister for Care and Mental Health (Gillian Keegan)]

I thank my right hon. and learned Friend the Member for South Swindon (Robert Buckland) for securing this important debate on funding for autism and neurodiversity research and for such a wonderful, heartfelt speech. It is truly my honour to respond. I commend him on the incredible work that he has done throughout his career to improve the lives of the nearly 560,000 autistic people and about 5 million neurodivergent people across the country. In his previous roles as Lord Chancellor and chair of the all-party parliamentary group on autism, he has been instrumental in driving improved awareness and understanding of autism across Government.

We know that too many autistic people and neurodivergent people more generally are ending up in the criminal justice system and that much more needs to be done to improve people’s experiences. The review that my right hon. and learned Friend commissioned as Lord Chancellor in 2020 looked at this important issue and, as a direct result of his contribution, I expect our newly published national autism strategy will make a big difference to the lives of autistic and neurodivergent people who come into contact with the criminal and youth justice systems. We know that the strategy needs to improve autistic people’s lives. It was informed by a national call for evidence and incorporated the views of more than 2,700 autistic people, their families and carers. It is underpinned by an implementation plan for year one—that is 2021-22—and backed by over £74 million for the first year alone. It sets out our vision for what we want autistic people’s lives to be like by 2026. Over the next five years, we will improve understanding in society, reduce diagnosis waiting times and improve access to high quality health and social care for autistic people.

My right hon. and learned Friend mentioned social care, and that will be a key part of the White Paper along with the social care needs of working-age adults. We will also publish further implementation plans for year two and beyond that will build on our actions this year. They will set out how we will drive improvements across health and care, employment, education and the criminal justice system.

We have made important strides across England in the last decade since the introduction of the landmark Autism Act 2009. I pay tribute to our friend Dame Cheryl Gillan for all her work in this area. The Act includes improvements in public awareness of autism and the availability of diagnostic services. To date, we remain one of the only countries in the world to have such legislation—I know that we are proud of that—but we know that we still need to do more to ensure that autistic people have equal access to services across their lives.

One of the biggest challenges that we face is, as my right hon. and learned Friend outlined, gaps in our evidence about what services and support work best for autistic people. I saw the real-life impact of that recently when I was interviewed by an impressive young woman called Immie. She told me about her struggle and how long it took her to get diagnosed with autism as well as the struggles faced by women and girls in getting the right support due to under-diagnosis. While we know that that is an issue and are taking action to address it, we need better evidence about the effects of masking and under-diagnosis of autism for women and girls.

When I was the Apprenticeships and Skills Minister, I met many young autistic people who told me they struggled to find and get into work. Recently, at the start of UK Parliament Week, I visited Littlegreen Academy in my constituency, which specialises in providing education to boys aged seven to 16 with autism. Pretty much every single one of them asked whether I would help them to get some work experience, to help them get on the ladder towards employment. Like my right hon. Friend the Member for Tunbridge Wells (Greg Clark), I took that as my action from the meeting.

Through our new autism strategy we are strengthening and promoting pathways to employment, such as supported internships, traineeships and apprenticeships, but to make further headway on closing the unacceptable autism employment gap we need to better understand the barriers to employment and the other barriers faced by people with autism.

We know that we have not reduced fast enough the number of people with an autism diagnosis in in-patient care, which is important, as my right hon. and learned Friend the Member for South Swindon said. There are many reasons for that number, but a main reason is that people are being diagnosed as autistic after they are admitted. We need to make sure the number of autistic people in such settings is reduced, as in many cases they are not the right settings. We set up a delivery board across Government and across system partners to make sure we monitor progress, identify blockers and propose actions so that people are better supported in their community, not in inappropriate in-patient care.

Many hon. Members mentioned the lack of understanding, and it is so important that we have more general understanding. I am sure many hon. Members remember the autism training that MPs and their offices received, again at the behest of Dame Cheryl Gillan, who pushed and encouraged us all to do that. I certainly learned a lot.

As set out in the “Right to be heard” publication in 2019, we are also trialling the Oliver McGowan mandatory training in learning disability and autism for all health and social care staff, backed by £1.4 million of funding. The trials are under way, and three providers are currently delivering the training. Hundreds of staff have already been trained. There will be a final evaluation report, which is due in the spring, and the outcomes will inform the wider roll-out of the Oliver McGowan mandatory training. We are working with his parents, Paula and Tom, to introduce the training.

As part of our new autism strategy, we will publish a cross-Government research action plan that lays out the steps we will take to improve and embed a culture of autism research by 2026. We know that we need a strategic approach to ensure that areas currently receiving less research investment, such as care and support—my right hon. and learned Friend mentioned the postcode lottery—are prioritised in future. We also need to make sure we are prioritising the right areas for research and that the research delivers the right change.

We will work with autistic people and their families, the research and voluntary sectors and NHS England to carry out this research action plan, which will ensure that we are building on the important work already happening in autism research. For example, we have already provided £81 million for autism and neurodiversity research in the past five years, which includes funding for a study on the impact of covid-19 on autistic people, a project to improve the accuracy of adult autism assessments and a systematic review to understand what mental health support works for autistic people.

In addition, we were delighted to announce this year a three-year partnership between the National Institute for Health Research and the UK’s leading autism research charity Autistica—which my right hon. and learned Friend mentioned—to fund research into the social care that works for autistic people. The partnership will encourage and support more research applications in this important subject area and we encourage many people to make such applications. I am glad we have had the opportunity today to hear about Autistica’s fantastic work and to welcome its new support plan. I am due to meet Autistica next week—that gives me some time to read the report—and I look forward to working with it on the development of our research action plan to transform the autism research funding landscape over the next few years.

I again thank my right hon. and learned Friend for securing this important debate and all Members for their contributions. I recognise that we must ensure that the actions we take to support and improve the lives of autistic people and their families are grounded in evidence. Through our new autism strategy and research action plan, we will level up support for autistic people throughout the country. I look forward to working with my right hon. and learned Friend and other Members to make that happen.

Question put and agreed to.