Autism Community: Mental Health and Suicide

Luciana Berger Excerpts

Thursday 30th November 2017 Commons Chamber

[Dr Cameron]

I wholeheartedly agree. As I said, the police are on the frontline. They face the crux of the matter when it comes to matters of life or death. They are doing their very best with the training and resources that they have, but there requires to be a clearer pathway so that people who are at that crisis stage can access health services—and probably crisis health services—and so that the police have somewhere to ensure that the clinical needs of those people are met. It is unfair for our police to have to take care of people’s clinical needs when that is not what their training provides for.

In 2016, an academic study in Sweden, which was published in the British Journal of Psychiatry, found that people with autistic spectrum disorder were nine times more likely to die by suicide than the rest of the population. The latest research indicates that people with autistic spectrum disorder account for a harrowing proportion of suicides in the UK. There is a 16-year gap in life expectancy between people with autistic spectrum disorder and the general population. To put it all very bluntly, people with autistic spectrum disorder are 28 times more likely to consider suicide than the average population —28 times. The statistics make one thing abundantly clear: what we are doing now to support people with autistic spectrum disorder is not working and is not enough. Research shows that almost seven in 10 people with autistic spectrum disorder experience mental health issues, including anxiety and depression. Services must be in place to ensure that people are cared for holistically. We have to meet all their clinical needs, which may mean their autism or their learning difficulties, but they will almost certainly have mental health issues. Quite frankly, we do not have services in place today that take account of the complexity of such needs.

What types of things are going wrong for people at the frontline? It is difficult for people with autistic spectrum disorder to access mental health support through the usual routes. For most of us, that might mean going to our GP as a first point of contact for primary care for mental health problems, but a GP practice is a daunting, unfamiliar place for people with autistic spectrum disorder. One young man wrote to me and described a recent trip, saying that it was

“quite hard for me to access the GP anyway. The whole environment is difficult. It’s noisy, there’s often children, it’s very hot. There’s also a loud beep when they call the next person that I find really quite painful. When you’re feeling emotionally poorly that becomes almost impossible.”

GP surgeries make reasonable adjustments for wheelchair users every day—simple changes that make the life of the patient easier—so the same policies should be implemented for people with autistic spectrum disorder. We need training to raise GP awareness. Access needs to be easier. We need to ensure that GPs know who on their register has a diagnosis of autistic spectrum disorder.

If an autistic person bypasses the GP and goes straight to mental health services, they may face unprecedented waiting times or they may simply be refused treatment. When individuals do attend services, they may find that they are discharged without any follow-up. At the Health Committee last week, we heard how a young autistic boy was turned away by child and adolescent mental health services four times, despite feeling suicidal, because he had not yet attempted to take his own life. Things have hit crisis point, and we need to ensure that we engage in prevention. Someone attempting to take their own life should not be the point at which they receive treatment. We need early intervention to pinpoint the symptoms of difficulty and where we should be aiming the treatment.

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I thank the hon. Lady for securing this very important debate. We both sit on the Health Committee, and during the inquiry into suicide prevention we heard that the point at which someone is most likely to take their own life is, tragically, when they are discharged from in-patient care. The Committee’s recommendation was that everyone should be contacted within at least three days, and we are waiting for the Government to respond that. Does she agree that everything should be done to ensure that the most vulnerable, including people with autistic spectrum disorder, should be supported in that period when they are extremely vulnerable to ensure that they do not take their own life?

[Dr Cameron]

I agree. That is an extremely valid point. If people arrive at A&E for crisis intervention and are admitted for a period of time, it is important that they are discharged with some follow-up. People often return to the same circumstances that led to the difficulties in the first place, and if they do not have some support to deal with those difficult circumstances, they may be in a vulnerable situation and may try to self-harm or take their own life once again.

If a person with autistic spectrum disorder feels unable to go to the GP or to reach out to services in their local community, they might try to ring a suicide helpline. However, that can be extremely difficult in itself for a person with autistic spectrum disorder who finds communication and social interaction difficult. They might be able to verbalise only some of their difficulties, and they may then find there is no follow up from that service, either. Early access points and early intervention are crucial to preventing suicide and preventing mental health problems being exacerbated. Much more has to be done at that critical early intervention stage to ensure access to services.

If a person with autistic spectrum disorder reaches a health professional, they often find that their mental health problems are overlooked or misdiagnosed, which might be because they present an extremely complex case. They might also have concomitant learning difficulties, and they might not present the symptomatology that would usually be expected for anxiety or depression per se because their symptoms are complicated by their autistic spectrum disorder. It is extremely important that mental health practitioners have training in autistic spectrum disorder, in the types of presentation that they might need to identify and, particularly, in risk issues.

Diagnosis is still a postcode lottery. I hope to continue working with the Minister on that issue, because we need an understanding of who is appropriately trained in diagnosis of autistic spectrum disorder and what level of specialty we have in different professions. What is the workforce plan to ensure that this very great need is addressed across our society? This is so important. People with autistic spectrum disorder say they do not know where to go locally. As a member of the Select Committee on Health, I have asked services about that, and they say, “We don’t really have a map of who can diagnose and who can provide specialist intervention in a given area of NHS England.” Streamlined services would make it so much easier for people to gain that initial access.

I do not want to take up the whole debate, so I will provide a brief overview before letting others speak. Many Members want to contribute to this important debate, but I wish to touch on a few other important issues.

I request that the Minister look at what mental health therapies work specifically for people with autistic spectrum disorder who have concomitant mental health difficulties. There is no adequate research base yet, but we know it is critical—it is lifesaving—so we need to prioritise funding. Traditional mental health therapies might not work in the same way for people with autistic spectrum disorder. If one of us presented at a GP surgery, we might be offered cognitive behavioural therapy, but we do not know whether that is the best option for a person with autistic spectrum disorder, or whether some kind of adapted therapy would be more appropriate. That important work should be undertaken, and undertaken quickly, to engage people in appropriate therapies and save lives.

I have been contacted by a couple of individuals whose poignant accounts have struck me. One is an individual from my constituency who says that she has continually tried to access CAMHS for her daughter, who has been repeatedly self-harming. It has placed the family in such a stressful situation over a lengthy period that the family, including the mother and carers, now feel that their own mental health is under stress.

It is extremely important that we ensure not just that individuals can access the system but that we preserve family life, that we support carers and families, and that we do not place an additional burden on the NHS and other services. Families and parents may go on to develop their own depression and anxiety when dealing with an intractable situation because they do not know how to cope. If we do not address the problem at its root, we will multiply the problem for services across the UK.

--- Later in debate ---

[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.