Autism and Neurodiversity Research Funding

Simon Hoare Excerpts

Tuesday 16th November 2021 Commons Chamber

[Robert Buckland]

I am grateful to my hon. Friend. In 2020, he and I visited his local prison in Winchester, a prison with many challenges and, there is no doubt about it, a share of the population with a brain condition, sometimes undiagnosed and often an acquired brain injury. Many people who are in for offences of violence have themselves been the subject of violence. Those issues are frankly endemic within the criminal justice system.

That is why, when I was Lord Chancellor, in last year’s sentencing White Paper, I announced a call for evidence on neurodiversity in the system. I was hugely grateful to Charlie Taylor, Her Majesty’s Chief Inspector of Prisons, and Justin Russell, Her Majesty’s Chief Inspector of Probation, for leading that independent call for evidence. Charlie Taylor was a public servant who came from the education sector, specifically the special needs sector, had real frontline knowledge and experience of autism and brain conditions and previously ran the Youth Justice Board for England and Wales.

The good news is that, thanks to the published results of the call for evidence, the Government committed—I am pleased to say I committed—to training for frontline staff and the upskilling of those staff right across the criminal and youth justice system, as part of a new custody and detention apprenticeship that is being offered and that will be completed by all prison officers. Her Majesty’s Prison and Probation Service is developing a revised policy framework and guidance all about those issues, but in particular about children in custody with those conditions. This work is carrying on. I will develop those points a little further. I know people are anxious to come in.

[Simon Hoare (North Dorset) (Con)]

rose—

[Sir Robert Neill (Bromley and Chislehurst) (Con)]

rose—

[Robert Buckland]

I will let my hon. Friend the Member for North Dorset (Simon Hoare) in first before my hon. Friend the Member for Bromley and Chislehurst (Sir Robert Neill).

[Simon Hoare]

I echo what our hon. Friend the Member for Winchester (Steve Brine) said in that it is a travesty that my right hon. and learned Friend is not speaking still from the Front Bench, but it is a delight to hear him speak this evening.

To go back to the point made by the hon. Member for Strangford (Jim Shannon), what is my right hon. and learned Friend’s assessment of the impact of covid on diagnosis, assessment, the provision of support and the crucial need to link up the Ministry of Justice, the Department of Health and Social Care, the Department for Education and the Department for Work and Pensions?

[Robert Buckland]

I am very grateful to my hon. Friend. There is no doubt that covid has had an impact on backlogs in all parts of the health system, including diagnosis. Having said that, there are significant advantages in the use of remote technology for people with autism and brain conditions. For them, very often the journey to a clinic, hospital or health centre is in itself traumatic and anxiety forming. I see remote technology as a real liberator for many people with autism, so the potential there is immense.

Sadly, the point my hon. Friend makes about the impact of covid is one that, without increased capacity and increased staffing, we will have to wrestle with for a number of years. On the point he makes about joined-up Government, I well remember saying on many occasions to anybody in Government who wished to listen that Justice could not do this on its own. As a downstream Department, it needed Education, Health, the DWP, the Ministry of Housing, Communities and Local Government and, frankly, all arms of Government to work together to identify some of these problems at the root to prevent them from becoming part of criminal justice, but I will speak more about that in a while.

--- Later in debate ---

[Robert Buckland]

I could not have put it better myself. Levelling up is about people and communities, not things. Things are important and they deliver us levelling up, but levelling up is about people. That is why the Government have to show seriousness of purpose. I am with the Government on these things—I helped to author a lot of the documents on which they will be held to account. This matters, but if we do not focus on people, we are not going to level up. That is the point that my hon. Friend made so well.

I commend the Autistica report to hon. Members, but if I may crave the indulgence of the House for a little longer, I want to outline what Autistica suggests the key stages of support should be that will make a real difference. First, the report made the important point that support for autistic families around and shortly after the time that they receive a diagnosis has to be improved, because it is big news for families. It is a big moment when they get that diagnosis. I remember now the mixture between relief that the system is listening and deep sadness, grief and anger, and all the emotions that someone goes through as a result. These are big moments for families. It sounds axiomatic, but this does not happen, because we do not empower all families of people with autism to understand the diagnosis and to come to terms with what it means for them. This is a moment when services have an opportunity to get to know these families better and to ensure that their personal profile, which should be done, is really understood.

[Simon Hoare]

Does my right hon. and learned Friend share my concern that, very often, as with so many of these things, the children of the—let me use this phrase—“sharp-elbowed middle classes” seem to get a disproportionate amount of attention, care and support and those who are often least comfortable with officialdom and challenging professionals and asking questions usually get the smaller section of the pie? Quite a lot of work needs to be done on that to ensure that we have that uniformity of levelling up.

[Robert Buckland]

Again, that is a really important point. I do not make any criticism of the sharp-elbowed middle classes; these people are doing what they think is right for their children. I have been there and I make no apology for it, but among all those dedicated, wonderful, loving parents and carers, there are many families who do not have that wherewithal, and they often come to our surgeries and offices for help. We are the last port of call and, very often, we can make a difference. Looking back on the plethora of cases that I have dealt with, I am probably most proud—I know that hon. Members will share this feeling—of bumping into families years later and being told, “You helped our son. He has just finished his education and is going to go off and pursue a skill. If you hadn’t intervened six years ago, I don’t know where we’d be.” That is wonderful, but it should not be necessary: that is the big message that I want to convey today.

Rather than just stand here and make a general cri de coeur, my aim is to look at the bigger picture. Individual cases such as the one that the hon. Member for Croydon Central mentioned are symptoms of the problem, but it is all about dealing with the challenge itself. Documents such as the Autistica plan really help to tie the threads together and give us a blueprint that the Government, working with the private and charitable sectors, can run with.

I mentioned support around diagnosis. The document has some very interesting proposals for pilots and initiatives relating to how we can improve what is referred to as the diagnostic pathway. At the moment, there is a lot of ambiguity about precisely what is offered and what works, but the time of diagnosis is not a time for ambiguity. It is no good making educated guesses at that point; we want to know with certainty what pathways work. Families embarking on this new journey need that certainty, so I strongly commend to the Minister the document’s recommendations, particularly in relation to the work of the National Institute for Health Research.

As stage one, we need a framework that can be applied nationally, rather than relying on purely local initiative. Stage two, as the document describes it, is preparing for the future: after diagnosis, what systems do we have to match the needs of people with autism and brain conditions with the right therapies and services? We need to make those connections better; we need to connect people to safe practical advice, particularly from people who have been through the system. Peer-to-peer support works in so many contexts, and particularly in this one.

What we and Autistica are asking for is not a finger in the air, but evidence-led systems. It is no good just saying that the needs of autistic people are diverse. They are diverse, believe me: when you have met one person with autism, you have met one person with autism. They are all wonderfully unique, in my experience, but that should not be an excuse to say, “We’ll let a million flowers bloom and see complete diversity.” We need less of an unguided mêlée and much more of a framework—a mechanism by which, with evidence, we can ensure better support for people as they prepare for life and work out the pathway.

Finally, the third element of the report is meeting in a realistic and feasible way—we are not trying to create something totally out of this world—the evolving, ever-changing needs of people with autism. That is particularly important at the transitions, be they from primary to secondary, from secondary to tertiary, or from tertiary out of education. Age 25 is a big time for people who have an education and healthcare plan, because it is the moment when it stops—and what’s next? All such transitions can feed anxieties that if left unchecked can develop into a co-morbid mental health problem, with the concomitant waste that I spoke about at the beginning of my speech.

The truth is that the needs of people with autism and their families fluctuate and change. Instead of inviting crisis, let us plan for it and avert it. The support that the report envisages is all about services that will be there if things start to get a bit heavy, but that can be light-touch in other circumstances. The suggestions about nurturing expertise in the NHS and social care with hubs of expertise to deliver specialised services seem the most sensible way of developing those service models.

This is going to take investment, but, as I have said, I do not believe that it should begin and end with Government, which, hopefully, is good news for my hon. Friend the Minister. If she has had a chance to see the report that I mentioned—it was published only today, but I know that her officials will be familiar with it, because Autistica works very well with the Department, and I commend those officials for working with it so constructively—she will know that it sets out a costed programme, in which Autistica itself declares it will invest, or partner, to the tune of nearly £16 million. That is money from the third sector, but we ask the Government to step up, because the total cost of the projects that Autistica envisages in its list is just over £65 million. All those projects are designed to improve the evidence base and hence to improve the way in which we can deal with each of those three stages, and I warmly commend them to my hon. Friend.

What, finally, is the context in which we should work? I have talked—at the risk of stating the bleeding obvious—about the need for Government Departments to come together: the Department for Work and Pensions on employment, the Department for Education on exclusions, the Minister’s own Department on diagnostics and care, and my former Department on criminal justice. As I have said, however, this will require an effort from all sections of society, and the private sector must step up as well.

It is in businesses’ interest to get this right, if they are to unleash the talent of autistic people not just because it is good, but because it is damn sensible. It is to that sort of enlightened self-interest in the wider community that I want, through the House, to appeal tonight. I think that the offer of finance from Autistica is significant, although I want to see it scaled up. I think that the work we need to do outside this place to harness philanthropy and the support of the private sector could start to bring us much closer to the levels of research investment that we see in, for example, the United States, which, although it does not enjoy the wonderful national health service that we have in our country, is very far ahead of what we are doing here in terms of research investment.

If we are to succeed, that partnership between the third sector, the private sector and the public sector will be essential. The quid pro quo for Government is that our wonderful officials must remember that they do not have a monopoly on wisdom. I have sat in the Minister’s seat and worked with officials and worked well with them, but sometimes there is an institutional reluctance to go outside the tent because of fears about control, whatever form it may take, and, inevitably, about accountability. We must overcome that, because Government alone will not be able to crack this.

The last two years have, in many ways, opened our eyes to the potential that Government can offer. Government-led support and declarations of Government funding meant that we were able to create a vaccine manufacturing capacity virtually from scratch. I am about to see 250 jobs come to Swindon—jobs that would not have existed a few years ago, without the terrible crisis that we have all had to live through. The Government rose to the challenge, and I was proud to see them do so, underwriting, in effect, many of these initiatives.

We heard words such as “moonshot”, did we not? We heard about the Government’s big ambition to deal with the threat posed by the pandemic, and rightly so. Let us remember that. Let us bottle it and use it here. Let us have our autism moonshot; let us have our neurodiversity moonshot. Let use the power of Government—its convening power—to kick-start this research, and to lead our society in the improvement of research. Through the gathering of that evidence and Autistica’s work, we can reach some of Autistica’s 2030 goals. Its realisable ambitions for 2030 include: halving the employment gap for people with autism; services truly centred around the person with autism; proven support from day one; public spaces being more accessible for neurodivergent people; tailored health checks for people with neurodivergence; and, yes, screening at an early age, whether in the health system or the education system. That is a wider application of the principle that I wanted to see in our criminal justice system.

This could be a decade of achievement. It is up to all of us and the Government to make it happen.