Autism Community: Mental Health and Suicide

Lisa Cameron Excerpts

Thursday 30th November 2017 Commons Chamber

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

I beg to move,

That this House has considered the support available for autistic people experiencing mental health problems; calls on the Government to ensure that the NICE-recommended indicator for autism in GP registers is included in the Quality and Outcomes Framework; and further calls on the Government to ensure NHS England works closely with the autism community to develop effective and research-based mental health pathway.

I thank everyone across the House, no matter what side of the Chamber they sit on, who supported the application for this important debate to the Backbench Business Committee. It is truly a cross-party endeavour to raise the profile of this issue, awareness of mental health issues within the autism community, difficulties about access to services, the importance of funding adequate support, and the progress we all must make across the UK for this population.

I thank the many autism charities, mental health charities and research groups that have reached out to me over the past few weeks.

[Paula Sherriff (Dewsbury) (Lab)]

Will the hon. Lady join me in thanking the Whole Autism Family, a charity run by Anne-Marie and Martin Kilgallon in my constituency, who have two autistic boys and who do so much to support other families, who can find it difficult to access medical and other healthcare?

[Dr Cameron]

I thank the hon. Lady for her important words. The bedrock of much of the work undertaken across the UK is such small charities, often run by those who have personal experience and know what works and what needs to be done.

The level of interest in the debate shows the importance of the issue. It is important to so many across the UK, including charities such as those already mentioned. Many charities have contacted me with important recommendations, including Autistica, the National Autistic Society, the Royal College of Psychiatrists and the British Psychological Society.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate the hon. Lady on securing this debate. Will she join me in congratulating women’s organisations in Coventry that are very much involved in mental health issues among younger people and older people in particular? What help can they get? Often, women act as carers and the Government should do something about that and give proper grants to those organisations.

[Dr Cameron]

That is an extremely important point. We must bear it in mind that for young people with autistic spectrum disorder, there is often a family-systemic approach, with carers are at the forefront of providing support, and they need the best resources possible.

I also thank the many citizens from across these isles who have contacted me to give their own poignant personal accounts. These accounts have been harrowing to read—and more harrowing for them to experience—and make us realise just how absolutely vital this debate is.

I also want to extend a personal warm welcome to the youth patrons up in the Gallery today representing Ambitious About Autism. Their recent campaign and research project, “Know your normal”, has been helping many people and raising important awareness. I pay specific thanks to the hon. Member for South Cambridgeshire (Heidi Allen) and the right hon. Member for Chesham and Amersham (Mrs Gillan), who have worked tremendously hard on this debate, on behalf of people with autistic spectrum disorder, through the all-party group over many years.

As a psychologist, I know that progress has been made on autism and mental health over the many years since I started in 1990, when waiting lists were extremely long—possibly a year and more—and services were very limited. However, much more must be done across the United Kingdom.

[Mr Kevan Jones (North Durham) (Lab)]

I accept the point that the hon. Lady is making, but I have to tell her that waiting lists in Durham are still two years long.

[Dr Cameron]

That is an excellent point, and that situation is clearly unacceptable. The Scottish Government and the United Kingdom Government are introducing waiting times initiatives across the United Kingdom. We are finding that the experience on the ground for young people with autism and their families, and indeed across the lifespan, is that, despite the waiting times initiatives, the waiting times that are expected to be in place are not the reality. We need to address that issue seriously.

[Kevin Brennan (Cardiff West) (Lab)]

Does the hon. Lady agree that mental health issues for adults with autism can arise out of the way in which they are treated when they encounter the criminal justice system? The behaviours that sometimes accompany autism can be misinterpreted by people in the criminal justice system. Does she agree that we need not only to get the health provision right but to ensure that the people working in the criminal justice system understand about autism and take it into account when they meet adults with the condition?

[Dr Cameron]

Yes, I wholeheartedly agree with that point. I have personal clinical experience of that through working across a variety of secure hospitals and prisons in my practice with the NHS. People with autistic spectrum disorder often find themselves caught up in the criminal justice system, which has little awareness of their needs or of the support that they require. When they get caught up in the system, it is difficult for them to move on and rehabilitate because the provision simply is not there.

[Mr Jim Cunningham]

Following on from the point made by my hon. Friend the Member for Cardiff West (Kevin Brennan), there is an argument that the police lack the training to handle some of these young people because they do not understand the nature of their mental illness. Does the hon. Lady agree that something needs to be done to provide the police with the necessary training?

[Dr Cameron]

I agree. Our police are on the frontline and they deserve the utmost respect for the work they do, but yes, it is correct to say that they require further training and also further support. There requires to be a clearer pathway when people exhibit challenging behaviours in the community, from the point at which the police are put into contact with them right through to the provision of adequate support in the health system, without their being caught up in the criminal justice system in between.

[Mrs Madeleine Moon (Bridgend) (Lab)]

The hon. Lady will be aware that the societal body that is most likely to come into contact with someone who is likely to take their own life is the police. The police, and particularly the British Transport police, are doing critical work in assessing how staff can be trained to identify potential suicides and to take action to take people back at a time of crisis in their life in order to prevent them from taking forward a suicide. We should not knock the police too much. They are doing fantastic work in this area.

[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.

[Mr Jim Cunningham]

I met a number of carers some months ago, and one thing that struck me was that from time to time they were extremely distressed. Some of them could not afford a holiday and they do not get very much help, to say the least,—they are not even paid as carers—so there is an effect on the mental health of the carers sometimes as well.

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[Dr Cameron]

Yes, that is exactly the point I am making. We are exacerbating the problem for families, and they are at grave risk of having their own mental health difficulties or separations if placed under significant stresses over a period of time. Such things can be avoided if supports are put in at an early stage, and we can address the difficulties and give them the help they need in that way.

The other case that struck me this week was that of an individual who contacted me last night to say that they hoped this debate would make a difference. They had been struggling for a long time to access services for their daughter, who had been self-harming over many years and in the past few weeks had tried to throw herself on to a dual carriageway under a number of cars. She had been feeling at crisis point—breaking point—and had been feeling isolated, having a lack of peer support and of clinical help at the time of need. This individual had been discharged from CAMHS a number of times after referral for assessment. I understand that if an individual comes to a CAMHS service and does not fit a diagnosis initially, it can be difficult to think of the types of services or follow-up they need, and they may be discharged. However, that has to be looked at, because young people in this situation have grave clinical need. They might not fit a clinical or diagnostic box, but they do have clinical needs that require following up. These young individuals are falling through the gaps, and this family was concerned that their young person would literally be falling under a car and they would be losing them for good. That just cannot be something we allow to happen in today’s society. As I say, this is a crucial issue—it will be life-saving if the Minister can show the leadership that we need today.

The five year forward view for mental health recommends that NHS England should develop a referral-to-treatment pathway for people with autistic spectrum disorder. That would be a vital step, as things are too complicated; people do not know where to access services and they do not know where to go. Even the services themselves do not know the best route forward for people after they present, so this has to be streamlined and we need to see progress in this regard.

As has been mentioned, we also need to look not only at children with autistic spectrum disorder but across the lifespan, at adults. It is very important that adults who may have autistic spectrum disorder have access to a diagnosis in the first place, and that if they present with mental health issues they are able to receive the support they need. This care pathway has to straddle the lifespan, so that none of our constituents, right across the UK, fall through these gaps.

It will be important to ensure that we undertake the GP registers, which are recommended by the National Institute for Health and Care Excellence, whereby individuals with autism are highlighted to GPs on these registers so that they can signpost them to correct supports. That is an extremely important issue. Last time this issue was debated, the Minister at the time said that the Government were “open” to these suggestions about the registers, and it would be important to hear an update on that today.

The Scottish Government have launched their own Scottish strategy for autism in 2011, declaring autism a “national priority”. I concur with that, as it is a national priority. This means more than simply diagnosing autism; it means that we must think about people with autistic spectrum disorder right across our communities, and about their access to services, to community services and to shopping centres—their access to society at large. This is bigger than just health, so I would like to know how the Minister is going to liaise with other Departments to make sure that we do not leave people with autism behind and to ensure that that message is embedded in all Government policy.

I have written to the Scottish Government to ask for an update, because I have read their policy thoroughly and it is extremely good, but constituents still contact me to say that, with respect to the implementation on the ground, they are having the same difficulties accessing services and that things are not working as they should. Perhaps the Scottish, Welsh and UK Governments can work together to ensure that best practice is in place for people with autism right across the United Kingdom.

I really hope that the Minister will listen to at least some of the recommendations raised in this debate. Other Members from all parties will have extremely important accounts to give. I welcome all the accounts given and interventions made. This is a vital issue of concern, so it is important that we work together, across party lines, to ensure that people with autistic spectrum disorder and mental health problems do not fall through the gaps but have the services they deserve.

[Several hon. Members rose—]

--- Later in debate ---

[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.

--- Later in debate ---

[Dr Cameron]

This has been a wonderful debate. It has been truly cross-party and collegiate, and we must work together to improve the lives of people across the autistic spectrum and the services that we provide for them. This is about lifespan, so it involves a number of services for all aspects of the lifespan. It is also about streamlining the transfer from child to adult services. This is a multi-departmental matter, and I urge the Minister to speak to other Departments to ensure that the autism strategy is embedded in all their policies. As has been said, we need more early diagnosis, awareness and support in schools, and treatments that can be adapted. There is also vital research to be done, and we could be world leaders in that regard. That is a key aspiration that we should endeavour to meet. People with autism need support from school to the workplace, and carers and families also need support. We also desperately need to provide crisis services. Parliament must be inclusive, and I am keen to hear more about what we can do as individual MPs, both in our surgeries and through Parliament, to take these issues forward. We need to make our surgeries autism-friendly places, to ensure that we are role models in service development.

The Minister has many issues to take forward, and I am thankful for her response. I am glad that her door is open, because I might be coming through it on numerous occasions. I am also keen to visit the projects that she has described, which are going to pave the way for progress. It is vital that we take this forward and save lives. Let us work together and do this right across the United Kingdom. Finally, I would like to wish everyone a happy St Andrew’s day.

[Madam Deputy Speaker (Mrs Eleanor Laing)]

Happy St Andrew’s day.

Question put and agreed to.

Resolved,

That this House has considered the support available for autistic people experiencing mental health problems; calls on the Government to ensure that the NICE-recommended indicator for autism in GP registers is included in the Quality and Outcomes Framework; and further calls on the Government to ensure NHS England works closely with the autism community to develop effective and research-based mental health pathways.