Autism Community: Mental Health and Suicide

Anne-Marie Trevelyan Excerpts

Thursday 30th November 2017 Commons Chamber

[Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

It is a pleasure and honour to speak in this debate, secured by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), because it is such an important issue. It is critical to make sure that those on the autistic spectrum are absolutely wrapped up in our mental health and medical services so that we no longer need even to raise this issue in the House. To that effect, the Government have put mental health on the political agenda as no Government have before. We have invested more in mental health than any previous Government, hired tens of thousands of staff and, most importantly, enshrined the parity of esteem of mental and physical health into law. The Prime Minister took a big step forward last month by opening a review of the Mental Health Act 1983, because too many people are still suffering discrimination.

[Luciana Berger]

I do not seek to be partisan in these sorts of debates, but it is important to note for the record that the amendment to introduce parity of esteem for mental health into the Health and Social Care Act 2012 was tabled by Labour peers in the House of Lords, and unfortunately Tory peers voted against it. I would not like the Government to seek to claim credit for the fact that parity of esteem is now enshrined in law.

[Mrs Trevelyan]

I thank the hon. Lady for her comments.

Despite the cross-party efforts of all those for whom this is a passionate policy area—for 18 years I have cared for my son, who is now a young adult with autism—there are some people who are having a miserable time in the mental health system and are not yet benefiting from improved access to core therapies and services: men and women throughout the country on the autistic spectrum. We must do better.

Across the board, a quarter of us will experience mental ill health during our lives, but within the autism community that rises to eight in 10—of those diagnosed as autistic, eight in 10 suffer from mental ill health. To those of us familiar with autism, that is sadly not a surprise. Society is designed for us neuro-typicals, as my son likes to call me—I am not sure it is meant as a compliment—so almost everything designed for us can cause stress or worry for those who are wired differently. A different perspective on the world has huge potential benefits for our society and economy, and we fail all those on the autistic spectrum to the detriment of not only the individual but society more widely.

We are failing these individuals. When I did some research for this debate—as I always do, if I can, for anything relating to this subject—I was appalled to discover the scale of suicide across the autism community. Autistica, the UK’s autism research charity, revealed international findings that autistic people without a learning disability are nine times more likely to die by suicide than the rest of the population. The charity’s research is now beginning to uncover almost identical rates in the UK as it starts to build the research database. As a parent, that is just awful to hear; but as an MP, it is a rallying cry. The exact causes are still being researched. We live in a complex environment and people are complex anyway. If we stick them in an environment that is often alien, it is not surprising that it is sometimes too hard to cope.

There are three clear ways in which our mental health services are letting our autistic citizens down now, and we have a duty to address them. First, we know that autistic people’s mental health problems are often misdiagnosed or missed completely. Despite mental health problems being the norm, there are no systematic mental health checks for autistic people. These problems can often present very differently, partly because so many become practised at masking their feelings to fit in. If someone is severely autistic, it is perhaps almost easier to identify them as sufferers, but those who are managing to live in a mainstream environment have learned some extraordinarily clever, adaptable ways to cope with our neuro-typical world and to their own very severe mental ill health. What is truly traumatic for one autistic person might not be for another, so when they do seek help, as the hon. Member for East Kilbride, Strathaven and Lesmahagow highlighted, autistic people can often find that their worries are dismissed out of hand. They are missed or misunderstood.

The NHS Five Year Forward View for mental health recommends the development of autistic-specific care pathways for mental ill health. That work, as I understand it, is supposed to begin in 2018, but we have heard nothing about it since February. Perhaps the Minister will be kind enough to update us on the project: is it still taking place; who is leading it; what is its scope; and how will autistic people be involved in helping to design it to make sure that we are not missing some very obvious things? Those things might not necessarily be obvious to those of us who are neuro-typical, but we must think in the different way that our wonderful autistic community so often does. This is a crucial opportunity to begin transforming care for autistic people, but we must get it right.

Secondly, we know that autistic people can struggle to find the support that works for them. It is assumed that what works for us neuro-typicals will also work for them. Autistic people may benefit from cognitive behavioural therapy but, as the hon. Lady who is an expert in providing such support says, being made to group work with strangers can be entirely counter-productive. We need to think about how we can adjust that support. The idea that someone who has issues with understanding, with being able to read faces, with processing information would in any way feel supported when they are in a state of deep stress shows a complete gap in understanding. The stresses and the symptomatic problems of people with autism make it more difficult for them to cope.

[Dr Cameron]

The hon. Lady is making an extremely powerful speech, as she is speaking from very personal experience, which is extremely valuable in this Chamber. I have also heard some disturbing accounts in the past few weeks of people with autistic spectrum disorder being referred to group-based therapies, which also shows a lack of awareness of symptoms, as they have issues with being able to interact socially and to communicate. That would place an individual with autistic spectrum disorder under even greater stress than if they underwent a different form of therapy.

[Mrs Trevelyan]

I absolutely agree. I work closely in my constituency with the families who are supporting their autistic children. Clearly, dealing with strangers, with the unfamiliar, and with group dynamics is possibly one of the most difficult things to ask an autistic young person—or indeed an older person—to take on.

We have for too long neglected the research into mental health therapies for our autistic community, even though that tops the list of research priorities if we ask those in that sector. I very much hope that the Government will look to support those who are doing this work. In our manifesto, we said that we

“will address the need for better treatments across the whole spectrum of mental health conditions”—

by—

“making the UK the leading research and technology economy in the world for mental health, bringing together public, private and charitable investment.”

I support those words wholeheartedly and hope that the Minister will be encouraging and will help us to do much more.

Thirdly, let me mention NHS data gathering—this is an issue that comes up in any number of NHS-related debates, but it is critical in this one. GPs are so often the first port of call for those with mental ill health. Going to a GP can be really, really difficult for autistic people. It is an environment with unfamiliar lighting, sounds and rules that cannot be escaped. The hon. Lady’s example of a bell going off is a classic one. It is the unfamiliarity and the pitch of the unexpected sound. There is a lack of understanding by neuro-typicals about what certain pitches of sound can do to those who have hyper-sensitivities. To an autistic young boy or girl, it can be like a bomb going off. We need to consider the impact of such things on those with these heightened sensitivities, especially when they are in a strange place and already in a state of anxiety. Strip lighting in public spaces is another thing that creates enormous tension.

[Paula Sherriff]

The hon. Lady is making an incredibly powerful speech. Some supermarkets, including Sainsbury’s, do an autism hour—every month, I think—which is great, as it provides literature in store for people, and staff also gain a better understanding. If a child or young person is having a meltdown, people should not think automatically that they are naughty but consider that they might be experiencing difficulties relating to their autism.

[Mrs Trevelyan]

The hon. Lady is exactly right. I have experienced many times the meltdown of a small child in a supermarket aisle and had people either offer a word of support or—usually—criticise me for being a bad parent. The line I always used was, “You tell me when you have an autistic child and take them shopping, and I’ll tell you what the problem is”. It is very difficult to understand. We need to provide places of calm. Cinemas do it, and we can do it too. I ask that the Minister take this forward and take on the challenge of getting those quality and outcomes frameworks to work so that our GPs can provide the support that people need.

[Several hon. Members rose—]