I beg to move,
That this House
notes that World Autism Awareness Week 2018 runs from
believes that there is a lack of understanding of the needs of autistic people and their families;
and calls on the Government to improve the support provided to autistic children in school and to autistic adults in or seeking employment, to reduce waiting times for autism diagnosis, and to promote a public awareness campaign so people can make the changes necessary for the UK to become autism-friendly.
I welcome to the Front Bench the Minister for Care, who will be responding to the debate. I gather that she chaired an autism accountability meeting on Monday, so she brings knowledge of that to the debate, and I look forward to hearing what she has to say. I thank the Backbench Business Committee for granting this debate during World Autism Awareness Week itself.
I want to put on record my great pride at chairing the all-party group on autism, which is a really good cross-party group that embraces people from both sides of the Chamber. It is important that we continue this debate on a cross-party basis because, as we must remind ourselves, in each Member’s constituency we probably have approximately 1,000 autistic people. The accepted statistic is about one in 100 people. This is therefore a subject that we share between us, and one on which we can make good progress when we all work together.
I am also aware that many Members have family members who are on the autism spectrum. I wish to put on record my thanks to colleagues who have shared their own experiences, because those experiences add to the body of knowledge and to the effective way in which we can improve situations for people with autism and their families.
The fact that this is such an important issue is reflected particularly in the National Autistic Society’s Too Much Information campaign, with which many of us will be familiar. Only 16% of autistic people and their family members think that the public really understand autism in any meaningful way. As a result, an alarming number of people—79% of autistic people and 70% of families—feel socially isolated. At a time when our Prime Minister has put in place a Minister for loneliness, we must not forget the isolation that can be caused for autistic people through behaviour or a lack of understanding in this area. Half of autistic people and their families sometimes do not even go out because they are worried about how people will react to autism, while 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.
Does the right hon. Lady agree that the situation is also very frustrating for those who fail to get a diagnosis of autism, particularly when their local authority is not able to provide one, or says that it does not have the resources to do so? Even if a person pays privately for one, the local authority will not accept that as a diagnosis.
The hon. Gentleman makes a valid point, and I will come on to diagnosis a bit later in my speech.
May I put it on record that while many people associate autism with mental health, it is in fact a developmental condition—a lifelong developmental condition—and not necessarily a mental health condition? Autistic people are as likely to suffer from a mental health problem as anybody else—any neurotypical person. I really want to make sure that nobody in this House ever confuses that, and I hope that that puts the record straight.
I wish to touch on the Autism Act 2009. Almost 10 years ago, I was very privileged to draw No. 1 in the ballot for private Members’ Bills and then to take through the Bill that became that Act. We are coming up to the 10th anniversary of the Act, which is really important. A key element of the Act was to mandate the Government to produce an adult autism strategy, and the 10-year anniversary will coincide with a year in which that strategy is up for review. The all-party group is working towards holding to account every Government Department involved, and making sure that their feet are held to the fire, because this affects almost every area of public life and public policy. Ahead of the review, I want all areas of our Government to consider how they can better support people with autism and people on the autism spectrum.
It is also important to look at the good that that Act has done. Almost 10 years on, the National Autistic Society had a look at this, and it is worth reflecting on the fact that autism really is on the agenda now for an awful lot of people, and locally as well. Almost everyone is aware of autism. NAS polling showed that 99.5% of people were aware of autism, and almost every council—93% of them—has an autism lead.
The right hon. Lady does the House a great service by bringing forward this debate on autism. Can she tell me—perhaps she does not have the figures—about employers’ attitude to employing people with autism? Are there any statistics on that?
The hon. Gentleman anticipates another bit of my speech. That is really important, because people with autism are disproportionately not being taken off the unemployment register. In fact only yesterday, with the all-party group for disability, I had a joint meeting with the Minister for Apprenticeships and Skills to look at the problems and consider how, working with employers’ organisations and the Government, we can try to improve the situation.
More councils now include autism in their joint strategic needs assessment, and almost every local area has a diagnostic pathway—those that do not will know who they are, but all but three are covered. That is really significant progress, but let us face it there is not a person in the House who does not know that we need to make more progress in this area, so I do not say that with any sense of complacency whatsoever.
I want to touch on a few areas, but I have only limited time. I have been very impressed by the number of Members on both sides of the House who have put in to speak, and it is really important that I hear from them.
I will start by talking briefly about education. My hon. Friends the Members for Bexhill and Battle (Huw Merriman) and for Lewes (Maria Caulfield) recently chaired an inquiry into autism and education under the umbrella of the APPG. They did some fantastic work, looking at how the education system in England currently works for children. The inquiry involved evidence sessions and surveys, and took additional evidence from more than 3,000 parents, professionals and people on the autism spectrum. It found that children are being held back from achieving their full potential because they are autistic. In our surveys, nearly 70% of parents told us that they had waited for more than six months for support at school, and 50% had waited for more than a year.
I congratulate my right hon. Friend on leading this debate. As a distinguished former Cabinet Minister, she could be drinking piña coladas in her garden in Amersham, yet she dedicates her life to helping with autism. Is she aware that autistic children are four times more likely to be permanently excluded than other children?
My right hon. Friend, who chairs the Education Committee with distinction, is absolutely right. That is why I am so pleased that this year, for the first time, the Government are putting a compulsory autism module into initial teacher training. That is significant, and I hope that my right hon. Friend’s Committee might look into that provision.
The inquiry of my hon. Friends the Members for Bexhill and Battle and for Lewes also found that four in 10 families were initially turned away when asking for the extra help that their child needs. To address these challenges, we have recommended that the Department for Education develops an autism strategy. That call has been enthusiastically taken up by the National Autistic Society and Ambitious about Autism, which launched the Held Back campaign to support the report’s recommendations.
More than 20,000 people, including 70 Members of this House and the House of Lords, have signed an open letter to the Secretary of State for Education calling for the report’s recommendations to be implemented. It is really important that Lord Agnew, the Under-Secretary of State for the school system, comes forward with the Department’s response, as it has confirmed that it will respond to the inquiry. It will be good to hear what it is doing to make improvements in this area.
I turn to the autism employment gap, which is a major problem.
I thank the right hon. Lady for the work that she does on the APPG, which is much needed and welcomed. I agreed with what she said about children in school, and I think that everybody here knows of such cases. My constituent, Lucy, has a bright seven-year-old son who is in year 4 but is working at year 1 level because he has not had his diagnosis. That an absolute disgrace for the child, who is missing out on his education, but Lucy also wrote to me to say, “I am exhausted”. She is fighting with all her energy, but says,
“I still have fight in me, but the whole family is exhausted” because they feel that there is a barrier at every step.
That is a common theme for parents who face this continuous battle. That is why we need to provide assistance. Every Member must know which routes they can take to provide as much assistance as possible.
I am grateful. I hesitate to intervene on the right hon. Lady because she is making a powerful point, but before she moves on to employment, will she agree that any new system has to take account of the frustration that parents feel as they attempt to get appropriate support for their children? In some cases, that frustration is overpowering.
I agree entirely. The right hon. Gentleman shows that there is great understanding of the issue on both sides of the House.
Some 60% of employers worry about getting support for an autistic employee wrong, and 60% of do not know who to ask for advice or support about employing an autistic person. Given the huge success of the Government’s Access to Work programme, it is a real shame that there is not better awareness of it among employers. I want to hear about that from Front Benchers. The NAS recommends that we ensure that Jobcentre Plus staff, work coaches and disability employment advisers all receive training in how to deal with autistic people.
I apologise to the House that I am losing my voice. My right hon. Friend is being extremely generous with her time. She quite rightly points out that Access to Work is a valuable initiative that helps people, but in my experience it helps people once they already have a job. Does she agree that it would be wonderful if that sort of initiative and expertise were brought forward to help people with autism to prepare for work so that they were less intimidated by applying for jobs?
I am also afraid that I am slightly losing my voice; I am sounding a bit Fenella Fielding. It is important that the Government promote the positives of employing autistic people and ensure that advice about supporting autistic people at work is made available to employers.
In the recent Command Paper “Improving Lives: The Future of Work, Health and Disability”, the Government acknowledged that autistic people were one of the groups that struggled most with employment. I would welcome the Minister addressing this point when she winds up, as well as giving us an update on the potential progress towards putting autism into the labour force survey, which would be an important step.
I want to touch on three other points: criminal justice; diagnosis waiting times; and access to democracy. The subject of people with autism in the criminal justice system does not often get the profile that it deserves. Because of the nature of autism, autistic people can find themselves being caught up in the criminal justice system inadvertently. We need to work hard to ensure that we are doing all that we can to support people not to enter the system in the first place, and we also need to get it right by ensuring that we do the best we can by those people when they do enter the system.
I have always been very impressed by Feltham young offenders institution, which has achieved accreditation from the NAS as an autism-friendly institution. I understood that 20 others prisons were going through accreditation. Will the Minister update us on what is happening with the autism accreditation system? Furthermore, we would like to see training for professionals across the criminal justice system. Will she take that point on board and give us an update on what progress the Government are making? The APPG will be launching a call for evidence on criminal justice over the next few weeks and I urge every Member of this House to get in touch with the secretary of the group if they have case studies and examples of autism and the criminal justice system to share.
As Mark Tami mentioned in his intervention, waiting times for diagnosis are critical. Diagnosis is a critical milestone for people on the spectrum, but individuals are having to wait far too long for an autism diagnosis. Research by Goldsmiths and City, University of London, shows that the average wait for children for an autism diagnosis is over three and a half years, while adults receive a diagnosis after around two years. The Government have committed to record and publish waiting times. Recording will start in April and publication will begin next year. That is incredibly important, and I hope that the Minister will update us on that.
Finally, I want to talk about autism and access to democracy. I sit on the Public Administration and Constitutional Affairs Committee, and our inquiry into the work of the Electoral Commission has just touched on this subject. Research suggests that voter turnout among those with a disability is much lower than that of the general population, and the Government, rightly, have a duty to close that gap and ensure that everyone is able to cast their vote. There are special access requirements around buildings, and the Government also commission guides on voting for people with different disabilities, such as those with a learning disability. However, I would welcome clarity from the Government on whether the adjustments that autistic people may need are considered in the Electoral Commission guidance, and on whether the Government are planning any autism-friendly guides for voters on the spectrum.
Autism affects so many areas of government that it is difficult to address them all in one speech. I am being held to about 15 minutes, but I could stand here for the next half hour and opine on where we need to go, what is happening, and where we need to have the drivers.
I want finally to return to World Autism Awareness Week and the reason why we are all here today. Autistic people tell the National Autistic Society that the thing that would make the biggest difference to their day-to-day lives would be if people understood autism. I have a personal aim that all those who play a role in public services, no matter where in this country, should be trained to appreciate the challenges faced by autistic people in the workplace, in schools, on public transport, and in other public places. If we all show just a little more awareness of how autism can affect others, we can make great strides in making autistic people feel at home and more welcome in all our communities.
Thank you very much, Mr Deputy Speaker.
I got involved with the autism cause, if I can call it that, very largely because of Dame Cheryl Gillan, who really paved the way with her private Member’s Bill and everything she has done with the all-party parliamentary group on autism. When I was Chair of the Education Committee and then the Children, Schools and Families Committee for 10 years, we looked at special educational needs in some depth, but I never persuaded my Committee to drill down into the autism area strongly enough, so I always had a guilty conscience about that.
After finishing as Chair of the Select Committee and indeed finding that one of the members of my large family is on the autism spectrum, I was energised to get more involved. Working harmoniously with the all-party group, I and others founded the Westminster Commission on Autism. We have already, in a very short period, produced two reports. One of those, “A spectrum of obstacles: an inquiry into access to healthcare for autistic people”, has already brought about substantial changes in how people perceive such healthcare. We found out how worried people on the autism spectrum were about going into an A&E, with the busyness, the lights and the noise, or even going to a GP. Access to healthcare is strictly limited for many people on the autism spectrum. I am delighted that the report has had such a great influence.
Does my hon. Friend agree that initiatives such as the autism hour promoted by the National Autistic Society last year—where shops opened for an hour with their lights dimmed and drew attention to how, exactly as he describes, going into a busy place can be difficult—are very good ways to raise public awareness?
My hon. Friend is absolutely right. Indeed, I would urge Members of Parliament to encourage autism-friendly environments in their constituencies. Having soft lighting and not too much noise can make a very big difference to accessibility.
This is World Autism Awareness Week. As I said, the Westminster Commission on Autism works very closely with the all-party group. Indeed, the right hon. Member for Chesham and Amersham is a member of the commission. Yesterday, we were proud to launch a report called, “A spectrum of harmful interventions for autism”. Many people in this country—very wicked people—play on people’s stress, worries and concerns and sell treatments for autism that really should be banned. They use social media. It is a disgrace in our society that people prey on very stressed families with children or other members with autism. We took evidence on this, and it was really upsetting to hear about the kinds of treatments and therapies that were on offer. It is a very interesting area, because it is unclear whether it is covered by the food regulator or the medical regulator, so no one is quite sure who to complain to. Our report has the answer. It is very important, and I hope that hon. Members in all parts of the House will promulgate it.
The most serious thing that we have to address is what happens when someone—usually both parents, but a mother nearly always knows earlier—notices very early on that something is not quite right. Then there is the frustration of not knowing who to talk to, where to go and where the support is. I am not going to be political at all, but one little thing is that children’s services are deeply under pressure in every local authority.
Does my hon. Friend agree that another crucial time is when someone moves from children’s services to adult services? That can be a very traumatic period if it is not handled properly.
Absolutely. All my experience suggests that most work now needs to be put into early family support, in every way. People feel so isolated and bereft of support, and bereft of knowledge. Thanks to the right hon. Lady and others, there is a lot of information out there, but how do people get it when they have never even really understood what autism means?
I increasingly get families with autistic children in my surgeries complaining about bad housing conditions in the private rented sector, with overcrowding, really appalling conditions, infestations, noise and so on, but there is also a problem with temporary accommodation and families being moved on. This creates particular stress for autistic children. Does my hon. Friend agree that those making housing assessments should take more account of autism?
My hon. Friend is absolutely right. Interestingly, as has been said, this goes right across the whole spectrum. Of course, having access to healthcare is important. Access to education is important, especially when there is a very supportive environment for a child on the autism spectrum at primary school and then going to “big school” is a very big challenge for them. We need to get this right, and support families to support the child at that time.
Recently, many Members were part of the campaign for Lauri Love, a severely autistic, wonderful young man who was in danger of being extradited to the United States. Anyone who met Lauri Love and understood his condition was sympathetic. At the moment, it looks as though we have been successful in supporting Lauri, so that is a great victory.
I was actually at Glasgow University at the same time as Lauri Love, and I remember him well from those days. The situation that my hon. Friend mentions is critical and exactly what we now need to tackle in the UK. We need a national approach, including engaging with the devolved Administrations, to ensure that there is a proper policy framework to safeguard the rights of autistic people across the workplace and in other forms of public life.
My hon. Friend is right. We need to spread the knowledge. We need to get the Government, right across the piece—there almost ought to be a Minister for autism—making sure that seamlessly, across all Departments, there is a high level of awareness.
On early diagnosis, the commission heard evidence on what happens in Sweden. Sweden seems to be one of the places that one looks to: I believe that the professor we interviewed was the man who actually minted the expression, “the autism spectrum”. The evidence we were given was that every child in Sweden is evaluated to see whether they are on the spectrum very early on—at seven years of age, I think—so why not every child in the United Kingdom? That is what we should be looking for—early diagnosis and early support of the family.
A lot of people on the autism spectrum fall foul of the criminal justice system. A person on the autism spectrum can get on a bus in a normal way in the morning, then if the bus is cancelled or something else happens that disturbs their routine, that has a very big impact on them. They may behave rather antisocially. The police may be called and they end up in a cell. I have heard this story so many times. The criminal justice system has to look very carefully at the needs of people on the autism spectrum.
The right hon. Lady knows that I accept that wholeheartedly.
I want to finish by saying that it is wonderful that we are having a short debate on autism, but we have to keep coming back to this. It is a very important part of all our lives as Members of Parliament. We must know more, do more and help more, and if that is part of what we manage to achieve this week, I will be very proud of this House.
Every time we have a debate on autism, we bring the issue forward, as Mr Sheerman pointed out.
As someone who has family experience of this—my wonderful 18-year-old son, who has been through the mill, has Asperger’s—constituents are starting to contact me and come and talk to me. They are stepping out into the light and saying, “How do I cope?” Having these debates is genuinely giving confidence to families, particularly mothers, to ask for help and ask how they might find support. As ever, I add my continued gratitude to my right hon. Friend Dame Cheryl Gillan for all the work she is doing.
My hon. Friend gives me a good opportunity to say to all those people who email me and contact me on social media that I cannot deal with all the questions and issues that come into my inbox, but I encourage those people to contact their MPs directly, because it is their own MPs who can help them—
Order. This is a very important debate. I put a seven-minute limit on speeches to try to give everybody a chance to speak. Given the interventions, I will have to drop the limit for Members lower down the list. I do not think it is fair. Interventions have to be short, and Members should think about whether they need to intervene—especially when they are summing up at the end.
Thank you, Mr Deputy Speaker.
I want to discuss waiting times for diagnosis, which are getting better. In the case of my son James, we could not get any kind of diagnosis within the NHS and had to go private. There is not yet the capacity within local areas to ensure that when there is something different with a child early on, there is somewhere to go. I contend the use of language by the hon. Member for Huddersfield—it is not that there is something not right, but that there is something different, and that use of language is important. I say that as someone who has shouted at a lot of people when my son has had a meltdown and said, “If you don’t understand what’s going on, could you kindly go away and keep your opinions to yourself?” That is not normally how I phrase it when I am in a supermarket.
I want to throw something into the mix. As we move forward with so much more work going on across Departments, we might look at having a regional centre of excellence on diagnostics for children on the spectrum, so that we can ensure that wherever we are—whether in the north-east, the south-west, the north-west or Scotland—we know as MPs that we can direct people to a centre of excellence that will be able to help to identify children’s particular needs and so that we never get into the question whether this is about mental health.
Autism is a permanent, different way of being, whether for profoundly autistic children, for whom a great deal of support is required, or those at the high-functioning end of the spectrum—the Asperger’s part—who can be incredibly successful. Some of our greatest inventors and businesspeople are in that space, but if people cannot make it through the basic education system because their needs are not met early on and they fall out of it, that will not happen. Early diagnosis is so important, and I ask the Minister to think about that.
That is very generous. Does the hon. Lady agree that early diagnosis has a huge impact on families? I have a constituent who was told that her son had autism at the age of 18 months but did not secure a diagnosis until he was five years old. That had a huge impact.
The hon. Lady is absolutely right. Not every council needs a child psychologist who is an expert in the identification of autism, but it would be great if there were one or two across the north-east, in my region, whom we knew we could always tap into. There have not been for years. The situation is getting better, but it is not good enough. We need to think more intelligently about how we provide that resource for families.
I want to talk in more detail about interventions. It is so exciting that the teacher training module will come into the system from September. Before I talk about that, I want to read from a letter sent to me by one of my constituents, a lady called Skye. I have not met her; I have knocked on her door, but there has never been anyone in. She wrote to me about her son, who is four years old and has complex needs. He attends our special school in Berwick. She says:
“Every day so many simple things in life that we all take for granted become a moment of stress, worry and concern”.
She says that could give a vast list of examples of the stresses her child undergoes every day. My heart goes out to her; I was there some 15 years ago, too. She highlights one particular issue:
“Shopping trolleys with child seats are designed for toddlers. My little/big man squeezes into this trolley with pain and distress. I have to lift him above my head because I am only a 5ft mummy.”
Those are the sort of practical things that day-to-day life can throw at mums who are having to deal with this. She goes on to say that
“many younger autism sufferers…have no boundaries, no understanding of the consequence of their actions, and if they have a crisis moment could injure themselves” by falling out of the trolley or running away. I lost James once in a supermarket, and it was possibly the worst half-hour of my life. She says:
“Being confined to a safe space (trolley seat) is safer for them. It provides an object reference”, as well as security, as a pram does for a much smaller child. That is a really interesting challenge to us, to think about how we might encourage the tools that can help a family in those public spaces where we go every week.
I almost never took James shopping until recently, as part of our plastics challenge, which I am sure the Minister will join us in. We went shopping and I said, “I’m not buying plastics.” He wanted a particular cheese that only came wrapped in plastic, so he had to buy it himself. There is a lesson for an 18-year-old boy who has never been shopping before: he gets taken shopping, and his mother then makes him do his own shopping.
The reality is that the tools to help people get over the crisis points are vital. I really hope that as the autism module rolls out, teachers are given those tools. James had an amazing teacher when he was six years old. He was not diagnosed, but she could see his meltdowns coming. She told me to bring a beanbag into school, which she put behind her desk. She said to James that whenever it all got too much for him—which was quite often, when somebody was prodding him, he was sitting in the wrong place or he could not see or hear—he was allowed to get up and leave his desk or wherever he was and go and sit in the beanbag behind the desk. The teacher knew where he was, because that is where he always went. The other children did not know or care; they carried on with their school activities. It gave him a safe place that was invisible to everybody else, but they knew he was safe, and then the moment passed.
This is a child who got three A-levels last year and is going to Newcastle to read zoology in September, but when he was seven or eight years old and undiagnosed, nobody thought he would be mainstreamed. He was mainstreamed because teachers thought about how they might give him the tools to get around those moments. We need the teacher training framework to think about the practicalities. These children are simply different, and we have to understand what not being neurotypical means. It is hard for those of us who are neurotypical to understand it.
We must give teachers the opportunity to ask questions. For many teachers in busy classrooms, if one or two children are struggling, the exclusion line is the one that is followed. The behavioural problem kicks in because the child is under a great deal of stress, entirely unnecessarily, and we find those children suffering huge long-term educational failure as a result of the teacher’s inability to intervene early on with something quite simple that can give the child time to recover.
My hon. Friend is absolutely right. It is fantastic news that special educational needs and autism are finally part of initial teacher training. Does she agree that, to make a really big difference, we need to ensure that autism training is a core part of continuing professional development for teachers, so that we can get it into all classrooms?
I completely agree with my hon. Friend. That is exactly the challenge. If we can embed understanding that these children simply see the world and react to it in a different way and that those different ways of looking at a classroom space can be all that is required, we can ensure that we get the very best out of every child.
As I often say, if we look at some of our great inventors, we see that the autistic mind is wired differently and therefore sees the world differently. They are an incredibly valuable part of our society’s intellectual value. Without them, we all think the same way. Group-think and moving in a single direction are not where the great stages of improvements come from. We need minds that look at the world in a completely different way. It does not make any sense to me half the time, but that is fantastic, because it throws in something completely different. They can direct change in a way that very few of us who are neurotypical will ever do, and to lose that by allowing these children to fall out of the education system early on is a great loss to society and to our intellectual value as a nation. I hope very much that the Minister will feed that back.
I reiterate that not being able to access support and a diagnosis is a continuing pressure for families that we should not be allowing to go on. When a doctor says, “I can tell you what it is with your child that you haven’t understood: it’s that they’re on the autistic spectrum,” it is like having a weight lifted off your shoulders. At that point, the world makes sense. As the hon. Member for Huddersfield said, you start to understand and be able to educate yourself as a family and bring others in. You still have to shout at people, because not everybody understands yet, but that is okay. You are empowered as a family member, and as grannies and grandpas, because you can understand why this child is not quite like others in the family. You can then move forwards and value them, and really give them the tools, so that they can be the great success that we know they can be.
It is a great pleasure to follow Mrs Trevelyan, whose speech was interesting, intelligent and very passionate, born of personal experience. I must also congratulate Dame Cheryl Gillan on securing and leading this important debate, which follows her great innovation of the Autism Act 2009.
As I am sure other Members did, I watched the excellent Channel 4 TV programme on autism yesterday evening. Its focus was primarily on a number of high-functioning, lively, intelligent and indeed charming younger people, illustrating the enormous breadth of the autistic spectrum. It is clear that the spectrum is not simply linear, but more of a patchwork of very varied and quite different behavioural characteristics. My concern today is about those who suffer more serious symptoms, as well as about their families and carers, who sometimes have to cope with very challenging behaviours, but my main focus will be on the possible causes of autism and how they might be addressed.
We know that autism comes in many forms, and although it is an unusual neurological condition, it can vary enormously—from those with behaviours that can be challenging to high-functioning individuals who sometimes have astonishing talents and abilities. Only yesterday, there were media reports about a brilliant young schoolboy with extraordinary musical abilities who seems destined for a great career as a concert pianist; even now, he is already composing.
As I have said, my particular concern is to look at the possible causes of autism and to address some possible factors in autism in its more distressing forms. I must emphasise that I am no expert in neurology, but I have long taken a thoughtful amateur interest in the subject. I am sure that much, indeed most, autism derives from genetic factors, and as the human genome is explored, some of this will be explained.
Some environmental factors, however, must also play a part in a range of human conditions. For example, it is well known that a deficiency in folic acid during pregnancy can be a contributory factor in certain birth defects, and vitamin D deficiency is at the root of much ill health. Even more worrying are the effects of some prescribed medications given in pregnancy, which have been demonstrated to cause foetal problems and lifetime difficulties for some babies.
I have to say that I have a specific interest in the influence of alcohol consumed in pregnancy, and I have long been an active member of the all-party group on foetal alcohol spectrum disorder. Most significantly, questions have been asked about the possibility that alcohol is a factor in some cases of autism. In preparing for this debate, I looked online at what research had been undertaken in order to discover whether there was a causal link between alcohol consumed in pregnancy and some—I emphasise, some—cases of autism. I found abstracts of six research reports dating from 2005 to 2012, in which the researchers have concluded that FASD and autism do exhibit similarities, although it is difficult to show that they are exactly the same. It is of course important to distinguish correlations and observed similarities from causal relationships.
The finding of one piece of research is that FASD and autism share similarities in social and communicative functioning. A more detailed report has illustrated a strong overlap between behavioural characteristics in FASD and in autism. That piece of research compared behaviours for 10 different conditions, including attention deficit hyperactivity disorder, bipolar disorder and depression, as well as autism and FASD. Some 39 characteristic behaviours for FASD were compared with the other conditions, and of them, 20 were also typical of autism, 24 of bipolar disorder, 17 of depression and 12 of ADHD. There were also differences between FASD and autism disorders, but it remains a possibility that there is a link between the two. Indeed, some individuals have in the past been diagnosed as autistic when they had actually been affected by alcohol and had FASD.
It is known that people with extreme cases of FASD exhibit facial dysmorphology, but researchers have found that FASD children are equally sensitive intellectually, regardless of whether or not they have facial dysmorphology. Such factors can make it more difficult to distinguish FASD from autism, and there are of course cases of individuals having both autism and FASD.
More research clearly needs to be carried out, and I have probably only scratched the surface of the research already done. However, if alcohol is a factor in some cases of autism, this would be very significant, and it would surely make the case for abstaining from alcohol in pregnancy overwhelming. Indeed, any substance, especially a medication, that is known to cause foetal damage should be avoided around the time of conception and during pregnancy. We all know that, but not enough is done to publicise it.
Even if it is eventually found that FASD and autism are entirely separate conditions, reducing the incidence of FASD—a terrible affliction in itself—is surely a vital and urgent matter that must be more seriously addressed by the Government. A number of Governments in Canada, Denmark and elsewhere are far ahead of Britain in taking steps to reduce the incidence of FASD, and we must follow their good practice. Many thousands of people will in future benefit in life-enhancing ways if those of us in politics do much more to reduce levels of the distressing forms of autism and of FASD. If we do this, we shall certainly have achieved something of immense significance, and indeed, I believe that we shall have added to the sum total of human happiness.
I am hugely grateful for the opportunity to speak in this important debate, and I again congratulate my right hon. Friend Dame Cheryl Gillan on her work in this area. I particularly want to pay tribute to the work of organisations that support autistic people, such as PACT for Autism in my constituency of Harlow. It started off as a small charity, but has now become a national one, and it has done so much to educate me about autism and to support families with autistic children across my constituency and elsewhere.
Ensuring that all children are able to access supportive, high-quality education and post-16 opportunities is essential for their life chances and for enabling them to climb the education ladder of opportunity. Our Education Committee is currently holding an inquiry into alternative provision, and we are likely to do an inquiry in the future into the role of special needs in education.
Children in alternative provision are the most vulnerable children. Compared to their peers, they are seven times more likely to have a special educational need, 10 times more likely to have a recognised mental health problem and, as I said to my right hon. Friend earlier, four times more likely to be permanently excluded from school than any other child. We have a real problem with the number of exclusions in our country. We are excluding a classroom-plus—35 children—from school every day.
We have heard all sorts of stories about exclusions in schools, and I think there is a wild west of exclusions out there. This is why our Committee is looking into it and undertaking an inquiry, and we have heard what my hon. Friend has said.
Does the right hon. Gentleman share my frustration at the fact that, while the strategies for making life as easy and pleasant as possible for such children in schools are available to everyone, the dissemination of that knowledge and its take-up by schools and authorities are so lacking?
The hon. Gentleman makes an important point. I will mention this later, but when my right hon. Friend the Member for Chesham and Amersham opened the debate, she talked about the increased training that is taking place, and the Government are doing a fair bit to try to change this situation.
As I have said, our Committee has heard that the number of exclusions is rising and that increasing numbers of children are being educated in alternative provision, but in some cases this is not the most appropriate place for children to be educated. We have heard that children with special educational needs and disability may have unrecognised or unmet needs early on in their school career—possibly speech, language and communication needs or, indeed, autism.
These children do not engage with their learning, and their struggle to engage and their unmet needs affect their behaviour and they get caught up in the school’s disciplinary procedures. Earlier intervention and support may well enable the children to continue to learn with their peers, or to be moved to more specialist provision, without the need for exclusion and the distress and disruption that this creates for the child and their family.
As Martin Whitfield pointed out, teachers need to be supported and trained to identify where pupils have additional needs and require extra support in the classroom. According to the National Autistic Society, only one in four teachers say that they received any autism training when completing their teaching qualification. Nearly eight in 10 say that they have received some autism training since qualifying, but fewer than half say they feel confident about supporting a child on the autism spectrum in their class. That is why projects such as The Difference, which aims to train school leaders to support pupils with mental health issues and autism, and reduce exclusion from school, are important. Such leadership is essential.
Our Committee heard from Drew Povey, headteacher of Harrop Fold school. He said that they consider education to be about preparing a pupil for life, and that
“as a result of that, we shifted our mindset to move from ‘we cannot exclude young people’, to, ‘we do not exclude’”.
Indeed, that school excludes no one. Drew Povey went on:
“That was extremely powerful for us as a school, and we are proud to say that we have not excluded a student, fixed term or permanently, now for over 10 years.”
What a remarkable school and remarkable headteacher.
We need to get post-16 opportunities right for young people so that they can continue to climb the ladder of opportunity when they leave school. I served alongside the Minister in one of her previous roles, and she is passionate about apprenticeships. Autistic young people should be able to benefit properly from opportunities such as apprenticeships, and I urge the Government to come up with specific proposals. They are doing a lot for people with disabilities, and to attract more women and people from the black and minority ethnic community, but we need a specific programme to help and encourage businesses to employ apprentices who have autism. I think that a levy would be a good financial incentive, and we should set aside money to create a specific apprenticeship social justice fund to support organisations such as the Prince’s Trust that bridge the gap between school and apprenticeships, and help vulnerable people.
These are issues of social justice, and all members of the Education Committee are committed to helping children and young people climb that educational ladder of opportunity. All children should have equal life chances, and be able to learn in schools that meet their needs and support them to thrive. However, being able to climb that ladder of opportunity is not sufficient if young people are not then able to move into the world of work. I welcome the Government’s commitment to approving alternative provision for young people, and I am heartened that a review of exclusion is being led by the brilliant former Minister, Ed Timpson. There must be more focus on ensuring that those children do not drop off the cliff edge of support when they leave school.
My constituency team has put making the world an autism-friendly place at the heart of what we do. We have held an autism-specific constituency surgery, and we encourage other MPs to do the same. We have run a roundtable for employers, and I speak to businesses about what they can do to increase access to jobs for people with autism. We work closely with the National Autistic Society and local organisations such as the Bristol Autism Spectrum Service, SEND a Welcome, and Autism Independence.
My hon. Friend and neighbour has set a wonderful example in Bristol of how we can work with autism services. I will hold my first autism-friendly surgery next Friday in Bristol with the help of the same organisations she mentioned, and I encourage other MPs to see whether they can do the same.
I am delighted that my hon. Friend is following the example of Bristol West in Bristol East. I have a member of staff who is allocated to lead for me on autism, and we are pushing the council and cultural institutions to work towards the National Autistic Society autism-friendly award. We support children with autism and their parents to get the educational support they need, and we do that because we believe that people on the autistic spectrum should be able to participate fully in our social, cultural, economic and public lives. We believe that all aspects of our lives are better when autistic people are included, and that is true for neurotypical people, as well as for autistic people and their families.
However, too many autistic people are excluded. Too many—far too many, as the right hon. Member for Chesham and Amersham knows—feel excluded, unwelcome, or unable to participate in the world around them as it is. They therefore feel isolated and lonely, and that is bad for us all. It is worst, of course, for children and adults with autism who experience that loneliness. New information from the National Autistic Society estimates that autistic people are four times as likely to be lonely as the general public. Four out of five autistic people who responded to the NAS survey said that they felt lonely and socially isolated some of the time. That is shocking and upsetting.
Such isolation is also bad for the parents of children with autism, who told the National Autistic Society that they fear going out because of public ignorance, or they have experienced being judged because of the behaviour of their child—some hon. Members have already mentioned that, in particular Mrs Trevelyan, who spoke so movingly. Such isolation is also bad for the rest of us, because we lose out on the untapped potential that autistic people have to offer as friends, colleagues, participants in civic society, and leaders. Loneliness hurts. Loneliness hurts health, and it keeps too many autistic people from fulfilling their potential.
The Jo Cox Commission on Loneliness has done sterling work on this issue, and recently, Tracey Crouch was charged with taking on the Government’s loneliness strategy. As they, and the all-party group on loneliness recognise, leaving people to loneliness diminishes all of our humanity. The survey by the National Autistic Society found that 55% of autistic adults want help with social skills, but only 10% actually receive such help; 53% would like employment support, but only 10% receive it; and 70% of autistic adults told the NAS that with more support they would feel less isolated.
Autistic adults experience significant under-employment—only 16% are in full-time work, and a further 16% are in part-time employment. Of the remainder who are not employed, nearly four out of five want to work. Most of us get our daily social interaction from work, and chronic unemployment increases autistic people’s loneliness, as well as keeping them on low incomes and making it harder for them to pursue other interests or travel to meet up with friends, thereby becoming less lonely. A lack of understanding by employers, educational institutions and others is often behind such under-employment and unemployment. I do not wish to repeat what other hon. Members have said, but I refer those listening to the debate to those earlier remarks.
I welcome the appointment of a Minister with responsibility for loneliness, who will be committed to developing a strategy, measurements, and funding for activities to prevent loneliness. Given the high risk of loneliness among autistic people and the parents of autistic children, may I ask the Minister to do everything she can to ensure that the loneliness strategy attends specifically to the needs of autistic people? I further ask her to urge all her colleagues to consult people with autism on that strategy.
Will the Minister tell the House what the Government are doing to help public awareness of autism, and to help and assist employers to review, and if necessary change, their recruitment procedures? We should encourage public and private organisations to make their spaces truly autism friendly and, as I have said before in this place, perhaps we should start by doing everything we can to make our buildings here on the estate, and our working practices—that will be a challenge for me—more autism friendly, perhaps by thinking about the noises and interventions that we sometimes make.
Exactly. My hon. Friend virtually predicted what I was about to say because we would all benefit from a more autism-friendly country. I will do my best to finish well under time, and taking interventions may impact on other people’s time.
We can all help to reduce loneliness for people with autism and the parents of children with autism. Autistic people and their families experience loneliness as a result of things that we can change. Let us all go from this place today determined to lead that change. We are leaders in our communities, so let us lead the change to make the UK truly autism friendly. Let us start today.
It is a great pleasure to follow Thangam Debbonaire and all my other colleagues who have spoken on this matter. I congratulate my right hon. Friend Dame Cheryl Gillan. I am very pleased to support World Autism Awareness Week.
I have a constituency interest and a personal interest in this issue. The constituency has a large number of centres that provide support to those with autism. We also have a spectacular charity, Music for Autism. I was interested to hear the comments on the link between music and those with autism, which has been enormously helpful. I hope to come on to my personal interest in due course.
Young people and adults with autism are some of the most loyal and hardworking people I have ever come across. All they need is a chance, and that chance comes through early diagnosis. The more I have looked at this issue, the more I have become attached to the idea of one-stop shops for parents or guardians. Provision varies depending on where one is in the UK. I refer Members to the Department for Education report that covers that, by our former colleague Lee Scott.
On school exclusions, what has shocked me the most is that young people with autism face more exclusions than any other group. That is a frightening thing to take on board. It is perhaps not surprising when we have heard that some schools are excluding people when they know that Ofsted is coming—a disgraceful use of the system.
My personal interest is as an ambassador for a scheme that goes by the names of the Glyn Hopkin Foundation, the Sycamore Trust, and Space—Supporting People with Autism into Continued Employment. The charity does a lot of the work that hon. Members have been talking about the Government providing. It not only provides people who are fully ready for work; it provides advice to employers on how they should go about changing their own operations to make them autism friendly. What I have taken away from its work is a reminder that minor, easy adjustments to recruitment and the workplace can make a huge difference. I am currently trying to take a young person with autism into my office here in the House of Commons to work alongside me, initially for a few weeks on my first attempt. It is a great privilege to be involved in this area.
I will finish a little earlier for similar reasons to those given by the hon. Member for Bristol West, but I will say that the Department for Education has done great work over many years. This is not a question of funding, but attitude. It is a question of getting the attitude right in the Department to face this opportunity to make the most out of those with autism, so that they can better contribute to our society.
Teaching has been mentioned. I am very appreciative of all that has been said about the provision of training for teachers, but actually I would not blame the teachers at all on this issue. I blame a number of local education authorities. It is currently very hit and miss as to whether a local education authority is autism friendly, and can cope and provide all the support services. There are many good examples, but I will not name them now.
Does my hon. Friend agree that not only is it important that schools do not exclude a pupil with autism when the Ofsted inspectors are coming into the school, but that those Ofsted inspectors should be fully trained to understand autism? They could then inspect a real class in a real situation and see how the school handled it.
My right hon. Friend makes a very good point. I expect Ofsted inspectors to be trained to ask the question, “Who has been excluded who has an autistic condition?” That should be fundamental to what an Ofsted inspector asks before beginning an examination. My criticism of local education authorities includes the fact that many do not pass on all the funding given to them by central Government. There is a great need for ring-fencing such funds so that LEAs can carry out what we are asking them to do.
It is a pleasure to follow John Howell, who made excellent points in his very detailed speech. I thank the Backbench Business Committee for once again prioritising autism in this Chamber. It is extremely important for autism to be raised, not just this week but throughout the year.
There are many faces here that I recognise from previous debates on this subject. There are champions across the House and across parties for autism and autism awareness. I thank hon. Members for their contributions and I look forward to hearing some more. In particular, I thank Dame Cheryl Gillan. She is an excellent chair of the all-party group on autism. She has led the way on this issue for many years, from the Autism Act 2009 to the present day. I enjoy working with her very much and hope to continue to do so. Research indicates that there are approximately 100,000 children with autism and 700,000 on the autistic spectrum, including children and adults. That is a large part of our population and it is apt that we discuss their needs and issues, and how to ensure that they achieve their full potential.
I want to touch on access to diagnosis, which other hon. Members have raised, for both adults and children. Unfortunately, this continues to be a postcode lottery across the United Kingdom. It has been raised repeatedly in evidence to the Health Committee and I am aware from my own constituency surgeries that there are still barriers to families, children and adults attaining a diagnosis within an appropriate time span. It has been mentioned that as MPs we are leaders. It is therefore important that, locally, we seek to help constituents to overcome those challenges. I recently wrote to the chief executive of our local NHS trust to find out about waiting times for adults and children. I was pleased with the response, which presented quite an optimistic picture. However, that is not commensurate with people’s experience on the frontline so we then have to go back and look at the difference between what services should deliver and are expected to deliver, and what they say they are delivering and can deliver. What additional support can we give to the services? What are the challenges preventing children and families on the frontline from accessing the services in the way that they should and as we expect? Those challenges are still in the system and it is important to overcome them.
I thank the hon. Lady and my colleague on the Health and Social Care Committee, who always brings such expertise and experience to these debates and to the Committee. Does she agree that it is not just the variation around autism, but the scale of that variation that is so striking? Children cannot access any of the other services that might be available without the initial diagnosis.
That is an apt intervention, and I agree entirely. It is not just the postcode lottery, but the widespread variation right across the United Kingdom. Through the all-party group, we hear that people from different parts of the UK feel that they have to battle the system repeatedly at every stage. This is very important. In Health questions, I have asked the Secretary of State whether the Department might consider putting individuals who can diagnose autism into every child and adolescent mental health services team. I know that the Department is looking at data and waiting times. That is so important to getting some degree of stability in the services provided and to ensure that everyone has adequate access moving forward. Knowing where we are to start with can only be a good thing when we look at the progress being made.
As has been mentioned, autism spectrum disorder affects people across their lifespan, so it has to be at the core of policy across many Departments, including those responsible for education and community. This is also about our surgeries. I have taken on the excellent points made by Thangam Debbonaire and I will start my own such surgery in the near future. We have discussed it since our last debate on this subject and it is an excellent idea. I recommend that, as MPs, we all move forward in the same manner, walking the walk, not just talking the talk.
The management of our local shopping centres have been positive about having autism-friendly opening hours so that families can come at particular times. The setting will be made appropriate and people will feel included and relaxed when they go about their daily life. There is so much more to be done. On employment, the autism employment gap is so much higher than the disability employment gap. We must take that forward.
Has the hon. Lady heard about the autism exchange programme, which Ambitious about Autism developed in partnership with the civil service? It has found that employers are pleasantly surprised at the benefits they get from employing people with autism.
That sounds like an absolutely wonderful initiative, and I hope that it is rolled out to many more organisations. We should all be working with local business communities to champion the potential of people with autism in the workplace. They have great skills to offer and should certainly be given the opportunity to be part of our workforce.
Before I finish, I want to touch on mental health and criminal justice. The last such debate that I took part in in the Chamber was about people who have not only autism, but mental health issues. That is extremely important; it is another reason why they should not be excluded from services—they need quick access as a priority. The Royal College of Psychiatrists estimates that those on the autistic spectrum are seven and a half times more likely to commit suicide. That is an absolutely startling statistic. If we put up barriers before people get to services and support, that figure can only rise. I ask the Minister to address access to services and the understanding of comorbidity within primary care.
On criminal justice, I recently met the Minister of State, Ministry of Justice, to discuss this issue, because I feel that those on the autistic spectrum are often lost in the criminal justice system and are very vulnerable within it. They are subject to bullying and have difficulty adapting and coping in that situation. We must do all that we can, so I was pleased to meet him and discuss some issues and practices from Scotland, and to share best practice right across the United Kingdom on special witness measures, support for those going through a court process and pre-arrest. In my constituency, we have a wonderful police training college at Jackton. I spoke to Police Scotland, which assures me that all its officers have undertaken mental health training and autism awareness training. That is excellent and just what is needed. We must continue to build on that.
I am pleased to speak in this debate, but the more I speak about autism, the more I realise how much more work we have to do. I am pleased to be moving forward on a cross-party basis. I will always be a champion for autism in my constituency and I like to work with like-minded Members across the House, of whom there are many and of whom I am very proud.
Like many colleagues, I suspect, I started to take a particular interest in how we as a society deal with those who have autism as a result of parents coming to my constituency surgery to describe the challenges that they face, and the obstacles that they must overcome to ensure that their children receive what we all want for our children: a good education, healthcare and so on. What struck me was the strength and determination of those parents. They felt that they had to be strong, determined and sometimes—I am sure that they will not mind me saying this—downright difficult to get the best for their children. We need to ensure that they do not have to be downright difficult to get what their children need, and that we provide for their needs—not necessarily without question, but certainly not in a way that appears obstructive.
Meeting these parents encouraged me to bring forward my ten-minute rule Bill in November 2016. As the motion said, it was a Bill
“to make provision about the access to education, school admissions and support for special educational needs, with particular reference to children diagnosed with autism”.
I noted in my speech that the Equality Act 2010 exists to protect people of all ages from discrimination. It should prevent disabled people from being treated unfairly because of their disability, but in some respects, sadly, there is still a long way to go. I went on to note what an irony it was that the Equality Act was being used to discriminate against children with autism. The National Autistic Society told me at the time that it believed that too many schools did not fully understand their duties towards children and young people with the condition. The law requires them to make reasonable adjustments for disabled and special educational needs pupils so that they may achieve their full potential. “Reasonable adjustments” mean ensuring that a disabled child or one with special needs can do what their non-disabled peers do, and it is important to recognise that while children with autism may behave in a manner that looks like bad behaviour, it is often an expression of anxiety. Unfortunately, as has been said, not all teachers have received specialist training that would enable them to identify it as such.
I had made a note that Department for Education figures show that autistic children are three times more likely to be excluded than children who do not have special educational needs, but the Chair of the Education Committee, my right hon. Friend Robert Halfon, said earlier that they were four times more likely to be excluded. I suspect he is even better informed than the report from which I obtained my figure.
After presenting my Bill, I had a meeting with the then Minister, Edward Timpson, who launched a consultation on whether changes to the guidelines were needed. It would be nice to think that whatever changes resulted have cured the problem, and things might have improved, but cases in my Cleethorpes constituency indicate that it is not clear that that has indeed happened.
In that speech that I made 16 months ago, I said:
“There appears to be a loophole in the law that does not consider challenging behaviour linked to a child’s disability as an impairment. If their disability could result in aggressive behaviour towards others in the school, the law on disability discrimination does not help them, and some governing bodies use ‘tendency to physical abuse of others’ as a reason not to meet the needs of an autistic child”.—[Official Report,
Vol. 616, c. 810.]
Sadly, it is then much easier to exclude such children. Of course governors have a duty to others in the school, but exclusion is sometimes the easy option.
This week I received letter from a constituent, who wrote:
“my daughter has been banned from the end of school Prom because she has ‘physically assaulted teachers and students’, no offer of being chaperoned was offered. I feel that the school has let her down by restricting her studies and as a result she is only taking four GCSE’s whereas prior to the school’s action she could have potentially got 5 pass grades.”
As I said, I received that letter only this week, so I have not yet had an opportunity to take the matter up with the school, but the fact that a parent felt it necessary to contact their MP about it rather than discussing it as part of the normal processes does not bode well.
A recent article in my local newspaper, the Grimsby Telegraph, set out the problems faced by parents of autistic children. It reported:
“Parents have…hit out at what they perceive as local services blaming them for the condition of their children, often being told that they are just poorly behaved, with the parents being told that they would have to go on a parenting course before they could get an autism assessment”.
That is unacceptable. The report continued:
“The main criticism has been levied against CAMHs, the national service commissioned by North East Lincolnshire Council that is meant to provide an autism pathway to help support children…Parents feel that while this service is meant to be available, they have had numerous troubles in trying to access it…Cora Leeson”— a constituent of mine—
“has been campaigning for better autism services in the area for a number of years, and believes that a recent freedom of information request she has received a response to shows that there has been a very low number of people in the area actually receiving a diagnosis of being on the autism spectrum.
Her figures showed that from September 1, 2016, to May 31, 2017, there were 36 assessments…carried out by CAMHS…Only seven of these resulted in a diagnosis of autism.”
My aim is not to be critical of North East Lincolnshire Council or the local clinical commissioning group. Improvements have been made, many people are working hard to deliver a better service, and I recognise that there are resource implications. Moreover, society has moved a long way in improving the lives of those with disabilities or special needs. Nevertheless, in my constituency and elsewhere, there is clearly more to be done. A system that is designed—as it has to be—to provide for a vast range of people and needs must have enough flexibility to enable the needs of all to be dealt with. I welcome the opportunity to highlight once again the needs of those with autism.
I am pleased to be able to contribute to this important debate. I thank Dame Cheryl Gillan for securing it, and for all her work in Parliament over many years on behalf of autistic people.
My engagement with autism comes through the many constituents who have contacted me since my election in 2015, through the experiences of friends with autistic children, and through the especially harrowing case of my constituent Matthew Garnett. I first met Matthew’s mother Isabelle in February 2016, when she came to my surgery. Isabelle told me that that Matthew, who was then 15, had been sectioned after a crisis in which he had attacked his father at home. He had been admitted to a psychiatric intensive care unit at Cygnet hospital in Woking, a private unit designed for assessment, diagnosis and onward transfer in which patients should stay for no longer than six weeks, but where Matthew had been for several months. The unit had no specialism in autism, and it has subsequently been closed after the Care Quality Commission found serious failings.
Matthew’s family, in their desperation to see him moved from Woking, had identified St Andrew’s hospital in Northampton as a specialist unit that appeared to have the expertise to meet his needs. I helped them to secure a place there. Soon after Matthew’s move to St Andrew’s, his parents began to express serious concerns about the treatment that he was receiving. There was little evidence that he was participating in any therapeutic or educational activities, he seemed distressed and withdrawn and, most worryingly, he had started to lose weight extremely quickly. When I visited him in St Andrew’s with his family, I was shocked at both the condition he was in, and the attitude and behaviour of some of the senior clinical staff whom I met. The subsequent complaints that his parents and I made, combined with a “Dispatches” documentary on his case and those of others at St Andrew’s, led to investigations, including one by the General Medical Council. I understand that some changes have now been implemented there.
Matthew’s family again identified an alternative provision for their son: Alderwood, also based in Northampton. This time, things worked out well. Matthew is living in supported housing with other young people. He is well and thriving, taking minimal medication, volunteering at the local football club, and participating in his local community. This could not be more different from the time that he spent in hospital, held under section.
I raise Matthew’s case again today because there is still unfinished business arising from it, and because although, thankfully, Matthew is now well and thriving, the experiences that he and his family have had resonate in many different ways with the experiences of autistic people up and down the country, including many of my other constituents.
For too many families, there is a constant struggle to access support. The then Minister responsible for mental health, Alistair Burt, commissioned a review of Matthew’s case from Dr Michael Marsh, and the report was published in June 2016. It catalogues a constant struggle on the part of Matthew’s family with every public service with which they had interacted since he was two years old to secure the support that he needed.
As other Members have said, there is a lack of expertise and understanding of autism across health and education services. I have heard from many parents that the experience of their autistic children in education is only as good as the expertise that any given teacher has in any given year. Mrs Trevelyan spoke of her son’s experience of one particular teacher. The support given to autistic children in school should not depend on accident—on the experience of a given teacher.
In particular, there is a lack of understanding of the relationship between anxiety and behaviour in autistic children. Disciplinary measures do not work if a child’s behaviour results from that child’s being scared or anxious. Such measures will only traumatise children further in those circumstances. I echo what others have said today: not only do we need training for new teachers coming through the system, but we urgently need additional training for existing teachers. They need to learn what autism is and how best to support autistic children in their classrooms.
There is a lack of funding for assessment, diagnosis and SEND support. Too many families are waiting too long for assessment and diagnosis. I have heard many head teachers say that even when families have a diagnosis, it is often still insufficient to draw down the additional support that is needed because of constraints on resources. This is a false economy for families. If we fail children in the education system by failing to give them the support that they need, we condemn them to a life of struggle, often to mental ill health, and often to interactions with the criminal justice system. Moreover, that will certainly lead to much more public sector expenditure in a negative rather than a positive way.
Too many avoidable crises are experienced by people with autism, and that brings me to the importance of community provision. I recently visited a centre called Lifelong Family Links. It is in a neighbouring constituency, but supports many of my constituents with autism. It is a day school and after-school club for young people with autism. It runs on a shoestring, and is now at risk of closure because of funding cuts. The families there to whom I spoke told me that many of their children would be in the criminal justice system—and, in one case, a foster placement would have broken down—without the support provided by Lifelong Family Links.
Again, it is a false economy when in the current atmosphere of austerity we are unable to provide the tiny amounts for what community-based services provide—they deliver so much. There is too much hospitalisation of young people with autism, and that is often in the private sector, with very little scrutiny of the effectiveness of the care and treatment that is provided. Matthew’s private hospital bed cost £12,000 a week of NHS money for care that was making his health worse, and I support Matthew’s parents’ campaign for homes not hospitals for autistic young people.
I wrote to the Minister responsible for mental health and inequalities when she was new in post, and then again in November 2017 to request a meeting to review Matthew’s case and the lessons that can be learned from it, but a meeting has not been forthcoming. I therefore want to end by asking the Minister for Care, who is on the Front Bench today, if she will agree to meet me and Matthew’s family so that we can ensure that the suffering that he experienced was not in vain, and we can deliver the change we need for families with autistic children across the country.
As everyone here today knows, autism takes many forms and it is sometimes not physically obvious. That is probably why some people are not diagnosed when they are children. However, most are, so I want to talk about one of them.
In the early 1970s, my parents ran a home for children with special needs at Chinley in the Peak district. My superb younger sister Alison Stewart, now Mrs Alison Collier, had just finished school and was living with my mother and father before starting further education. I remember that one of the young boys in the care of my parents was called Frankie. He was autistic. Of course, Alison also helped to look after the children when she could.
Frankie seemed to adore and trust my sister, and Alison, for her part, liked and helped the boy a lot. The problem came when my sister went off to college in Leeds. Alison knew that it would be very upsetting for Frankie, so to help to calm him my mother took him along when she drove Alison to start her university course. Together the three of them went to Alison’s allocated room in the college. They started unpacking her luggage. As they did so, Frankie kept returning Alison’s belongings to her suitcases. He was clearly not accepting the situation and simply did not want things to change. I gather that that is typical behaviour for some people with autism and, of course, Alison had to stay in Leeds.
When my mother returned to Chinley, it was clear that Frankie was very upset. Apparently, he sat in Alison’s room, rocking backwards and forwards in agitation. He was clearly very sad. For her part, Alison knew very well how upset Frankie would be by her departure. She telephoned home and spoke to my parents. Then one of my parents handed the receiver to Frankie, and, for the first time ever, he used the phone. He was desperate to communicate with Alison, and, by a supreme effort, he spoke to her. It was an achievement that my parents always remembered with pride until they died.
For Alison, her experience of caring for and helping Frankie was crucial in deciding her future career. After university, she trained to teach people with additional needs, and until this day she still does just that.
I gather that autistic people do not normally have learning difficulties. Indeed, they are often very intelligent. They can also have skills that are unique. That is certainly the case with the artist Stephen Wiltshire, who suffers from autism. His particular talent is drawing lifelike, accurate representations of cities, sometimes having only seen them briefly. They are amazing pictures, and I suspect that most honourable colleagues have seen them. Stephen studied fine art at the City & Guilds college and was awarded the MBE for services to the art world in 2006. His work is popular all over the world, and he clearly is, or should be, a poster boy for autism.
Autism impacts on people in many ways, yet it has nothing to do with ability to learn and it is certainly not visible. As we have heard today, it is an all-life disorder and there is no cure for it. If there is a common condition among the varieties of autism, it is probably that people have difficulty with social interaction. Often, they do not like change in their lives or routine, like Frankie when my sister Alison left home to go to university. They also feel, and sometimes look, isolated and withdrawn.
As my good friend, my right hon. Friend Dame Cheryl Gillan—who is in the Chamber rather than drinking piña coladas in Amersham, as was suggested earlier—has said, autism hits about one in a hundred people, so it is pretty common. Thank goodness that it is also a condition that is increasingly being understood, and I hope very much that a debate such as ours today will increase people’s understanding and support for those with autism even more. I will finish there, Madam Deputy Speaker, so that others can speak for longer.
Somebody on Twitter recently asked which film made in Hollywood best bears watching over and again. Of course, I answered “Groundhog Day”. Sometimes, when we have such debates, it can feel a bit like groundhog day, because the same sorts of issues are repeated over and again. What is really important is that they generate some raising of awareness, which they do, and action from the Government.
I hope that having listened to today’s debate the Minister will take away some of the issues that have been raised and try to turn them into some sort of Government action. Hon. Members have been right to raise a number of issues, including that of exclusions, which was mentioned by the hon. Members for Henley (John Howell) and for Cleethorpes (Martin Vickers). What is disappointing is that if we look at the statistics, we can see that exclusions were dropping in the noughties. As an ex-Minister, I can tell hon. Members why they were dropping: they were given serious attention at the centre of government and there was a real grip on bringing down the rate of exclusions, both permanent and temporary, for all children, including children with autism.
One problem—although I understand why the Government did this—of atomising our schools system by making them more and more independent and bringing in accountability measures that encourage sometimes perverse and unethical actions from headteachers is that, in my view, it leads to a rise in exclusions. It is generally thought better to get someone out of the way when the Ofsted inspection comes along, as the hon. Member for Henley said, or to have them excluded from the school if they would bring down the GCSE results. That is unethical, especially without a system in place for those children to be properly educated elsewhere. I appeal to Ministers to look very carefully at what is happening to those exclusion statistics and to get a grip of them from the centre.
It is understandable that the focus of most of the debates on autism tends to be about how it impacts on children. That is completely understandable, but we must not forget, and many hon. Members have not forgotten, that autism does not cease to be an issue when someone turns 18 and becomes an adult. Many of the services that might be available to children with autism fall away when they become adults. Parents get older and it is often more difficult for them to cope. Adults with autism face a complex world when they leave full-time education, if, as we hope, they have not been excluded from it, and the behaviours and traits associated with autism are often poorly understood, misinterpreted and sometimes even mistaken, as we have heard, for criminality.
A key problem is the difficulty in ensuring that services are joined up across the Government—across the Department of Health and Social Care, the Ministry of Justice, the Attorney General’s Office, the Home Office, the Department for Work and Pensions and the Department for Education. We had a debate on this very subject on
The Minister will be about the third Minister to respond to a debate on autism that I have participated in recently, and I hope that she will go away and talk to other Ministers to ensure that they are thinking about how they can work to bring Government policy together on tackling the issues around autism. I hope that she will take seriously the suggestion from a Conservative Member in a recent debate that they should bring together a board or working group of Ministers from different Departments across the Government to tackle some of these issues with ministerial leadership.
When I spoke in that Westminster Hall debate at the end of January, I focused on how adults with autism were affected by the criminal justice system. That has also been mentioned by the chair of the all-party parliamentary group on autism, Dame Cheryl Gillan, and I very much welcome her call for evidence to the group. I encourage other hon. Members to respond. I will certainly do so, and I will encourage my constituents to participate as well.
Some of the behaviours associated with autism, such as stimming—the repetitive physical movement that helps to reinstate a sense of calm in people with autism—are often misunderstood. This is particularly the case for a constituent of mine when he is in a crowded public space or travelling on public transport. When adults on the autistic spectrum come under suspicion of criminal behaviour, safeguarding becomes absolutely crucial, and I referred to that constituent’s case in the Westminster Hall debate. The safeguards in the criminal justice system did not protect him as they should have done under current policy and practice. His stimming was misinterpreted while travelling in crowded conditions on public transport, and that led to his arrest.
I appeal to the Government to look specifically at what happens to adults with autism when they come into contact with the criminal justice system and to find ways to ensure that the police—particularly the British Transport police—are properly trained and that all the services know how to deal with autistic people when they are arrested. I hope that Ministers will consider setting up that joint group. I do not expect her to commit to that today, but I hope that she will commit to taking the idea away and considering it further with other Ministers and reporting back to the House at an appropriate time, so that our debates do not just become groundhog day.
It is a pleasure to follow Kevin Brennan. I want first to place on record the fact that many of my constituents have contacted my office and urged me to attend this debate. Many of them have sent emails expressing how much it would mean to them if their Member of Parliament were to attend the debate. I am glad to see so many other hon. Members here as well.
When I was first elected, one of the first things I introduced in my constituency was a surgery specifically for carers. That is important for carers of people with autism, because they often face issues in isolation, including education, social and social security issues. Sometimes, those issues are not faced in isolation; they can become combined. That is why I introduced a specific surgery for carers, so that we could look at all those issues in combination, rather than dealing with them separately.
I want to raise a matter that has not yet been mentioned—namely, the difficulties that those with autism and their carers have when navigating their way through the social security system, particularly the personal independence payment application process. I have a constituent, Mrs Geraldine Lynch, who attended a PIP assessment with her son Jordan, who has autism. Mrs Lynch has said that the descriptions of her son in the reports that came back from the assessment process and the mandatory reconsideration process were unrecognisable. Perhaps they were the wrong files, describing the wrong individual, or perhaps my constituent was misdiagnosed and not given a proper PIP assessment.
My real fear about the PIP process is that far too often there is a lack of specialism among the assessors and a lack of understanding of specific conditions. My experience of my constituency workload tells me that that also affects those who suffer from autism. I encourage the Government to look specifically at ensuring that assessors of PIP, employment and support allowance and other benefits include a specialist on autism and related conditions. That is very important if we are to help those people.
There have been some positive developments in my constituency. One of them relates to my constituents Debbie Elliott and Claire Ellis, who have launched a support group called the Triple A Parents and Carers Support Group in Govan, and I would like to thank the Govan Housing Association for providing free space in its hub to allow the group to organise. It runs a drop-in every Friday. The purpose of the group is to allow parents and carers facing the same issues to share their experiences and to give each other advice, information and support. It is important that carers of those with autism and other related conditions have that kind of support, and the number of support groups is growing in my constituency and elsewhere. They allow support and the sharing of information and experiences, which helps other individuals. Added to that, on the Pollok side of my constituency, Differabled Scotland is organising a parent-to-parent peer support group for parents and carers of children, young people and adults.
My hon. Friend has mentioned Differabled Scotland. Some of the people who run that organisation are constituents of mine, and I had a powerful meeting with them during the general election campaign last year. It is clear that the amount of support needed for people with autism is growing, and the work of Differabled Scotland is particularly valuable because it provides a peer support network of parents and carers of children of all ages. It does very valuable work.
I thank my hon. Friend for that intervention. I, too, met organisers from Differabled Scotland a couple of weeks ago, and it was an excellent meeting. It is quite inspiring that there is peer-to-peer support and that people are sharing their experiences. Both the organisations that have been launched in my constituency are important.
It is also important for people to have access to welfare rights officers, and those officers are in attendance when these groups meet to help people to navigate their way through the various issues that I have mentioned, particularly those relating to social security support. Those groups that are now getting up and running also need funding, and I would like to ask the Minister what kind of funding the Government are planning to put in place to help those peer support groups to grow. What kind of finance will be available to them? I pledge to help them to get the necessary finances, so that they can continue to support carers and parents and help their organisations to grow.
It is an honour to speak in this important debate. My constituent, 14-year-old Zachary Saunders-Love, has a severe intellectual disability, autistic spectrum disorder and sensory and communication issues. Zachary is a wonderful young boy, physically strong but often unco-ordinated and unco-operative. The week before Christmas, he made a clumsy grab at one of his teaching assistants at his special school, and accidentally fractured her collarbone. It was an awful thing to happen, for Zachary, his family and the teaching staff. As a result, Zachary was permanently excluded from his special school. Since then, he has been stuck at home, being cared for by his father, Mark, who is losing hope of finding a suitable alternative facility nearby able to handle children of his size and with his complex needs. Mark told me:
“My son and many like him have a life limiting condition that will last for their entire time on Earth. Many won’t improve. None of them will get better. They will never be numerate or literate and they will never give back to society in real terms. Because of this they are not welcome in schools who are ultimately in competition with each other for results, and resources.”
A recent Ofsted report showed that Bedford Borough Council had significant challenges with special educational needs and disability provision. I know that it is working hard to make the necessary improvements, and I will be meeting with local authority leaders as soon as possible to discuss this important issue. I was pleased to hear the Secretary of State addressing the all-party group on autism recently about the need for a review of the shockingly high exclusion rates among SEND children. Will the Minister update us on when this review will take place, and will she agree to meet with Mark Love, who only wants to give his son the education he deserves and has some fantastic ideas for easing the burden on the SEND service?
Like all the speakers who have gone before me, I am delighted to speak in this important debate on autism, particularly as it takes place during World Autism Awareness Week. In common with colleagues across the House, I also want to put on the record my thanks to Dame Cheryl Gillan, who has blazed a trail in this area.
Today’s debate is important because for far too many people living with autism there is not just the actual condition to cope with, but, as we have heard, the isolation and often bullying and judgmental attitudes from a society or community that too often does not comprehend the condition. That is why we all need to work hard to raise awareness of it. In the longer term, the challenges that the condition brings can leave those living with it emotionally scarred, which in turn can lead to difficulties accessing employment and living a fulfilling life.
We know that 700,000 people in the UK are autistic, but many others we do not know about will be awaiting a diagnosis. Even if we take the 700,000 figure, however, and then factor in the relatives, it means that living with autism is a fact of life every single day for 2.8 million people. It is right and proper, therefore, particularly during World Autism Awareness Week, that we debate this important matter and recognise the challenges of the condition and how much more we must do as a society to meet them. Attitudes towards and awareness of autism are changing, but we still have some way to go.
We also need to understand, as the right hon. Lady pointed out, that autism is not a mental health condition. That said, as many as 71% of children with autism also live with a mental health challenge, such as anxiety, depression or obsessive compulsive disorder. Such mental health challenges are not inevitable, however, but the result, it seems, of the social isolation that autism too often brings. The Association of Graduate Careers Advisory Services found that 26% of graduates on the autism spectrum were unemployed—by far the highest rate of any disability group and more than double the average unemployment rate for disabled adults—and, although figures are hard to establish, it is thought that only 15% of autistic adults in the UK are in full-time work.
A large scale study in the British Journal of Psychiatry in November 2015 found that people with autism were more than twice as likely as their peers in the wider population to die prematurely, and recent work by the National Autistic Society found that only 16% of those living with autism and their families felt that the general public had a meaningful understanding of autism. Moreover, young people with autism are 28 times more likely than their peers who do not live with autism to have suicidal thoughts. That is the scale of the challenge; we have a significant way to go, despite having made some progress.
I do not know if, in common with me, the hon. Lady received a briefing from the Royal College of Psychiatrists for this debate, but I was surprised to find that one in 10 psychiatry consultant posts were unfilled. We have a shortage of psychiatrists, which inhibits progress in this area, particularly in diagnosis and treatment.
As the right hon. Lady’s intervention shows, meeting the challenge will not be easy. We still have huge mountains to climb to make life better for people living with this condition.
All these challenges show why we must continue to highlight the condition. It is important not just that people living with this condition can access the support they need but that they feel supported and that they live in a society that does not overlook, shun or ignore them, as has happened too often in the past. The challenges facing those living with autism are not inevitable. With work and education, and by raising awareness and understanding of autism in our communities, much can be done to counteract the negative outcomes they too often face. That is why I want to put on the record the sterling work done in my constituency by community campaigners Suzanne Fernando and her family, Jordan, Arron and Kester. The Fernando family live with autism every day and have worked tirelessly to raise awareness of the condition in their local community of Ardrossan and beyond, and have met with considerable success in doing so. Every year, they put in a huge amount of work to hold a coffee morning to disseminate information on the issue and offer support to those in the community living with the challenges of autism every day. As I have said, we know how isolating this condition can be.
We are very impressed by the work that the hon. Lady’s group is doing, but I am slightly nervous about one thing that I am picking up in her speech. A lot of people I meet in the autism community do not like the word “condition”, because it presupposes that it is an illness, which it is not.
The hon. Gentleman makes an excellent point. I shall try to refrain from using that word in the future, as I am sure we all will.
If we raise awareness and understanding of autism, the wider public will necessarily display more sensitivity, kindness and compassion towards those living with this condition, and it is this that will help to remove the shadow of loneliness and isolation that autism too often brings. We know that loneliness and isolation are very damaging to general health and wellbeing—their corrosive effects are as damaging as smoking cigarettes—so we could actually be saving lives.
It is not all bad news, however—progress has been made. I am proud that the Scottish Government in 2011 launched the Scottish strategy for autism, declaring that autism was a national priority. But the job is not done—not by a long way. We know that there is no room for complacency, and we can all play our part in developing our awareness and displaying understanding of the challenges and difficulties that those living with autism face every day. I hope that this debate and World Autism Awareness Week have played some small part in that, and that they demonstrate how seriously the House takes the issue.
I congratulate Dame Cheryl Gillan on bringing this debate to the Floor of the House, and I thank all the right hon. and hon. Members who have made significant and wonderful contributions, including personal points of view, to this debate. World Autism Awareness Day is designed to highlight autism and, more importantly, the struggles that those who have autism go through and how we as a society can help them. We certainly are making strides towards that. The Minister will be able to highlight some of the things that we have done and, to be fair, some of the things that we still need to do.
Some local churches in my community allow local autism groups to use their facilities as a safe space to meet and have fun with the children in a controlled atmosphere. The Moviehouse chain of cinemas in Northern Ireland screens autism-friendly screenings on the first Friday of every month, making certain changes to make the experience more enjoyable for the child and their families, including having the sound and lights on low and no trailers, giving people the freedom to move around and take their own food and drink, and offering free entry for carers with a valid CEA card. Odeon cinemas also offer certain autism-friendly screenings.
I want to say a public thanks to those chains and to my own local cinema, Movieland Newtownards—now part of IMC chain since the sad passing of Ernie Watson—which has plans to begin autism-friendly screenings in my constituency. I suggest that other hon. Members have a chat with their local cinemas to see whether they will do the same. Such screenings may not make the most money—that is not what they are about—because people are allowed to bring in their own snacks for their children to eat and because there are no adverts, but they provide a service that is appreciated by families throughout the community. The life of an autistic child can be somewhat isolated, and the nature of the complex needs of the child can also mean an isolated family life for those who live with the experience every day.
Research cited by the Royal College of Psychiatrists that has been mentioned by others highlights the high levels of suicide among autistic people. Roughly 40% of autistic young people have symptoms of at least one anxiety disorder, compared with 15% in the general population. Chris Stephens, who has just left the Chamber, referred to the welfare changes, and I want to put on the record my concerns about them. Autistic children and adults are affected by changes to ESA, work capability assessments and PIP. Assessors need to be aware of what it is to have autism. With respect, if they had that ability, it would make things a lot easier.
Constituents have told me that they are absolutely terrified by the assessment process, so does the hon. Gentleman agree that there needs to be a far more sensitive and direct approach to dealing with people with autism?
The hon. Gentleman is absolutely right, and he and I regularly share comparisons between our constituencies. Assessors need to be sensitive, reactive and understanding.
Autism is a massive issue for schools to deal with, and only a seasoned teacher may be able to spot the signs of autism in a child. Mrs Trevelyan referred to a child who was able to go and sit on a cushion behind a desk, and that shows an understanding teacher who knows how to deal with such issues. We cannot reach out and cure the situation as such, but it is important that we build in the support systems. While there has been significant improvement in the number of diagnostic assessments, and many hon. Members have referred to early diagnosis—the hon. Member for Berwick-upon-Tweed referred to her own circumstances in a personal and honest way, and it is important that we listened to that—coverage is still very patchy. Will the Minister outline how the Government are ensuring equity of access across the country? Have discussions been held with the Northern Ireland Department of Health to ensure parity of accessibility?
Northern Ireland has a slightly different system in that we have the Autism Act (Northern Ireland) 2011, and Patricia Gibson referred to the Scottish legislation, which also came into force in 2011. The regions across the United Kingdom have some really good stuff in place and have done significant work, and I suggest that we should be exchanging that good practice. If we do that, I think we will all gain. Northern Ireland has gained from what has been done in Scotland, and Scotland and Northern Ireland can gain from what you do in England. I again suggest very gently that you could really gain from what has been done—[Interruption.] Sorry, Madam Deputy Speaker, not you; I meant the Minister. Someday I will learn not to use that word—you live in hope.
In Northern Ireland, one in 40 or 2.5% of children have a diagnosis of autism. Accurate prevalence figures for adults can be difficult because many adults with autism do not have a formal diagnosis so the statistics are misleading, but 25% of individuals with autism have an accompanying learning disability. It is not just the autism but the spin-offs such as anxiety disorders and learning disabilities. Their education may be a wee step behind, but we have heard good things today about the results for children when effort and time are put in.
The fact that four males are diagnosed with autism for every one female is perhaps an indication that we might need to address the gender issue. However, we know that it is sometimes harder to diagnose females with autism, so the statistics may hide the true number of autistic females.
Statistics show that 16% of autistic adults are in full-time employment, despite individuals with autism having ability. Again, it is important to put the issue of employment on the record. Many autistic people, especially those diagnosed in adulthood, have little or no access to post-diagnosis support, as Kevin Brennan also mentioned. Young adults with autism should not be forgotten, so what are we doing nationwide?
Diagnoses of autism are as different as snowflakes, which means that a one-size-fits-all approach simply does not work. We have to look at it individually and not collectively, because that is not how it is done. We must diagnose the level of each individual and provide appropriate support not simply to them but to their family. It must also be highlighted that, although one in four people with autism has a learning disability, three in four do not. Whether or not there is a learning disability, we must do more to support all of them to reach their full potential rather than be held back by a lack of understanding from society in general.
Our job in this House, through the Minister, whom we are pleased to see and to support, is to ensure that adequate support services are in place and to raise awareness to foster greater understanding among the general public.
It is a pleasure to speak in this debate on a condition that affects more than 700,000 people in the UK but that is often misunderstood.
I welcome World Autism Awareness Week and the opportunity to have this debate in the Chamber. I thank all the contributors, and I will acknowledge each in turn, but I particularly thank Jim Shannon, who rightly outlined that some of the welfare changes have had a detrimental impact on those with autism. Thangam Debbonaire highlighted that this Parliament could benefit from being autism friendly, which would be a benefit to all.
I thank my hon. Friends the Members for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), for Glasgow South West (Chris Stephens) and for North Ayrshire and Arran (Patricia Gibson) for their initiatives in their local communities and for their carer-friendly and autism-friendly surgeries. I hope to be able to follow in their footsteps.
The hon. Lady will be pleased to know that Parliament has been accredited as an autism-friendly destination, of which we are very proud. We want to try to maintain that across the board, so we are constantly keeping the administrative authorities up to their mettle so we retain that accreditation.
I was just about to champion the right hon. Lady and celebrate her championing of those with autism and her work with the APPG. Lastly, Mrs Trevelyan, in one of today’s most valuable contributions, spoke of her son’s experience.
As we have heard, the National Autistic Society estimates that 16% of working-age people with autism are in full-time employment and only 32% are in any kind of paid work. Furthermore, 79% of people with autism are currently on benefits. One thing we could do in World Autism Awareness Week is consider how policies affect individuals with autism.
My constituent Macoist Fordyce, about whom I have spoken previously, has Asperger’s syndrome and recently applied for universal credit with the help of his mother, who felt compelled to highlight the treatment they both faced at their local jobcentre. I am not saying this to be political, as I simply want to inform the Government and give them an opportunity to address it, because that is exactly what this debate should do. Although my constituent had received an email at the time asking whether he had any physical disabilities, no consideration was given to what someone with autism may face. They were greeted by two advisers on arrival, who were behind a glass panel, knew nothing of Macoist’s autism and stated that he would meet a work coach on his next appointment. Mrs Fordyce tells me that she explained in detail how Asperger’s syndrome affected her son, including the difficulties involved in attending that initial appointment, but was informed that he would have to attend or his claim would not be processed.
Let us take a moment to think about how different and less stressful this situation could have been if the jobcentre staff had some training in autism awareness. Let us imagine the original appointment email had not just asked about physical disabilities but had asked whether there were any barriers that would prevent Macoist from attending. Let us imagine that on receiving the information that Macoist has Asperger’s syndrome, the jobcentre had sent through full details of what to expect at the appointment, including that a quiet room would be made available to try alleviate some of the anxieties he experienced. Let us imagine that the frontline advisers had read his application, in order to be aware of his disability, and then knew how to put in place the appropriate strategies to conduct the interview accordingly as they understood what my constituent might have had difficulty with, given that he had outlined that he had autism and that a neurodiversity toolkit is in place. I am sure Members will agree that Macoist and his mother could have had a more positive experience.
The “About Me” disability passport is an excellent idea that could certainly ease some of the issues faced by those with an autistic spectrum disorder. However, I question whether the Minister’s good intention in bringing forward this passport with access hosted on the websites of charities and other third sector organisations has actually come to fruition over the past year. I recognise that work is being done, but we can promote that work further and this is a prime opportunity to review those processes and make sure that we are doing this—certainly my constituent had never heard of it or come across it.
Mrs Fordyce reports that her son’s second appointment with the work coach was even more challenging. Again, no attempts were made to accommodate Macoist’s disabilities, resulting in a panic that might have been avoided if his first experience had been taken on board and referred to for the second meeting. The work coach was also unaware of Macoist’s autism, and was unaware that Mrs Fordyce was his appointee and refused to let her assist her son with his answers. No allowances were made for the challenges Macoist would face in completing his work commitment or holding down a position of employment, and they were told that he had to seek and be available for work or his claim would not be processed.
Sadly, the difficulties faced by my constituent in the welfare system are not confined to the jobcentre. On the work capability assessment, despite a phone call to check that Macoist would be seen at his 3 pm appointment and again checking on arrival at reception, at 4.20 pm Mrs Fordyce was called back to reception to be told that, after they had looked at Macoist’s assessment form, they had found there was no one with a specialised report of his assessment that would be able to do the assessment and that it would probably have to take place in a few weeks’ time.
In the course of my casework, I have submitted many complaints to both Independent Assessment Services and the Centre for Health and Disability Assessments. I have been told on many occasions that health professionals have to be trained and accredited experts approved by the Secretary of State, and it is not a requirement for them to be a specialist in any particular field. Perhaps simply expanding autism awareness training to those who work on a day-to-day basis in this area would be a starting point. This particular complaint has not yet been resolved, but it again highlights how the problems faced by those with autism in the social security system could easily be tackled by simply expanding on some of the brilliant initiatives and programmes that already exist.
Of course, in the Scottish Government’s work and in Northern Ireland there are many prime examples of areas where both the devolved nations and Administrations are doing things differently, and we can all learn from this across the board. On that basis, I ask the Minister simply to consider the work being done by the Scottish Government, and I recognise the work of the UK Government in this area. Many aims, strategies and initiatives to improve the lives of those with autistic spectrum disorder are already in place, but a key point to remember from this debate is that there is of course more that we can do. For an individual with autism, there is no benefit to the current system. I encourage the Minister to revisit the aims of the hidden impairments toolkit, the autism and neurodiversity toolkit and the “About Me” passport, and ensure that the targets are being met.
I congratulate Dame Cheryl Gillan on securing this debate and thank the Backbench Business Committee for providing the time for it. It is an important debate because, as we have heard, there are several hundred thousand people with autism, and of course millions of people will be in a family with one of those autistic people. It is important to thank Autistica, the National Autistic Society, Ambitious about Autism and all the other charities and organisations in the sector for the work that they do and the support that they give to those with autism. I also wish to recognise the Whole Autism Family in my constituency, which is run by Anne-Marie and Martin Kilgallon. They have two sons with autism and provide amazing support to other families in the area.
It is important to say that, although I am the shadow Mental Health Minister, as we have heard this afternoon autism is not a mental health condition. It is entirely possible for people with autism to have good mental health, but, sadly, for too many that is not always the case. As we heard from Patricia Gibson, it is estimated that between 70% and 80% of autistic people develop mental health problems such as anxiety and depression, and four out of 10 children with autism have at least two mental health challenges. Indeed, Autistica highlighted mental health as the top concern facing people with autism and their families.
It is clear that more needs to be done to support the mental health needs of people living with autism. The reduction of the health inequalities experienced by people living with autism is a priority for the NHS mandate for 2017-18. That is of course welcome, but to tackle the disparities it is necessary to ensure access to appropriate mental health care.
The motion rightly highlights diagnosis—the vital first step towards getting support for people with autism. As we heard in the excellent contributions from Robert Halfon and my hon. Friend Mark Tami, getting a diagnosis is the first hurdle that children with autism and their parents need to get over to secure the support and education to which they are entitled. The NICE quality standard on autism recommends a maximum wait of three months from referral to first diagnostic appointment. It is clear that currently that standard is too often breached, and that the waiting time can be gamed by delaying later appointments. Some children have quite literally been left waiting to wait.
My constituent Patrick Samuel had to wait nine years before he was diagnosed with autism. It was only when he was diagnosed that he got the drugs and support that he needed. He is now a flourishing, successful artist. Does my hon. Friend agree that it is totally unacceptable for someone to have to wait for nine years?
I think all Members would concur that waiting nine years is absolutely unacceptable. To be fair, that is at one end of the waiting-time limit, but it is clear that there are many delays in many areas, often running to years. One local authority has recently admitted that it has delays of 125 weeks. Collectively, Members from all parties need to work together to try to bring down delays of that length, because they mean that support and intervention may be less effective when it arrives, and lead to parents losing confidence in the system. As with many other conditions, illnesses or whatever we call them—it is difficult to find a suitable noun that actually describes autism—early intervention is absolutely the key.
There is clear evidence that a positive experience in the diagnostic process is associated with lower levels of stress and more effective coping strategies for families. We have heard in previous debates about the lack of data on waiting times. This April is meant to see the start of new standards on the collation and publication of such data. I hope the Minister will update the House on where we are with that. There is a need for better data on the number of diagnoses and who is being diagnosed with autism, so that we can identify where there are gaps. The National Autistic Society has reported that more than three quarters of people who use its adult services are male, but there is a concern that that may be related to a lack of recognition for women and girls with autism. Similarly, there is a generation of people for whom autism was not a recognised condition when they were younger.
I rise in support of the hon. Lady’s point. I bet there are a heck of a lot of people who have autism, and no one can really understand that they have it—they probably do not understand it—but a lot of people are like that and they are adults.
I thank the hon. Gentleman for his intervention.
NICE recently recommended the creation of an autism register so that areas where autism may be under-diagnosed can be identified. Following that, the Government committed to including autism in the primary care register. Will the Minister update the House on the implementation plans for this scheme?
We must also ensure that post-diagnosis support is in place. We know that parents have raised concerns about being left with no support during and after the diagnostic process, not being signposted to other advice and help, and not even getting a written report of the diagnosis. Too often, there are significant barriers to accessing the right treatment. In a previous debate, we heard the shocking case of a young boy who was having suicidal thoughts, but was rejected four times for treatment because he had not yet made an attempt to take his own life. The Children’s Commissioner for England confirmed concerns about that issue when she stated to the Health Committee that this type of situation was now “the norm” within children’s mental health services. That is worrying for children’s wellbeing generally, but particularly so for those living with autism.
Does my hon. Friend agree that we need increased support in schools? Nearly 77% of parents say that their child has to wait more than six months for support at school. It is just as important that a child gets support at school as well as in the health system.
Once again, I absolutely agree with my hon. Friend. I will go on to talk about that matter in a moment.
GPs may also need to tailor the way in which they communicate with patients. For instance, they may need to use clear language, or to find ways to communicate with somebody who does not speak. To do that, GPs must be able to access detailed and accurate records about their patients’ needs. Currently, GPs often do not record much information about their autistic patients, and may not even record at all that a patient is autistic. The five year forward view for mental health recommended that NHS England should develop autism-specific mental health care pathways. If the Minister could give us any more information on that I would be very grateful indeed.
As I alluded to earlier, early intervention is key for communication and language skills, which are closely linked to life chances for people with autism. Perhaps the Minister could address the new communication therapies that are being trialled, such as pre-school autism communication therapy, and the pilot studies in Plymouth and Bangor to test new post-diagnosis support programmes. If these programmes are successful, what steps will the Government take to ensure that they are rolled out?
In education, children with autism and other special needs are all too often paying the price for cuts. The first real-terms cuts in school budgets for a generation have put enormous pressure on schools. The vast majority of school budgets are spent on staff costs, and that makes it hard for schools to keep their current staff and maintain the necessary level of pastoral provision. As a constituency MP, I know how the cuts have hit my own borough of Kirklees. The Government’s new funding formula leaves councils needing to take money for central high-needs funding from the amount allocated to schools. That means that schools may now face a cut of up to 1.5% in per-pupil funding.
More than 4,000 children in England with approved education, health and care plans still receive no provision. There was an increase from 1,710 in 2016 to 4,050 in 2017, which was five times the number in 2010. The impact on children with autism was laid bare by the recent inquiry by the all-party group. More than four in 10 families have been turned away when asking for the extra help that their child needs, and 70% of parents said that their child waited more than six months for support at school, with 50% waiting more than a year. I could go on with yet more shocking statistics, but I think the reality is evident. Does the Minister have any response to the all-party group’s recommendations?
If we let down children with autism in education, the impact is felt when they become adults seeking employment, as we have heard from a number of Members this afternoon. In 2015, the Government pledged to halve the disability employment gap, but they watered that down in their 2017 manifesto. Analysis from the TUC found that the Government were years behind schedule on their 2015 manifesto commitment to halve the disability employment gap, and at current rates of progress that would take until 2030 to achieve.
There is an urgent need for improved in-work support for people with disabilities. The Government must act to strengthen and enforce workplace rights, and to improve support for employers to help their employees to stay in work. That would be good for everyone, because a 10% rise in the rate of disability employment would represent a £12 billion gain to the Exchequer.
The autism employment gap is even wider than the disability employment gap. Over the past 10 years, there has been no real change in the numbers of autistic people in full-time work, with the percentage rising from 15% to just 16%. The National Autistic Society found that less than a third of autistic adults were in some kind of paid work, even though more than three quarters wanted to work. There are concerns that this is not even monitored, so perhaps the Minister will address that point. The NAS has also called for an autism employment pathway, an awareness programme for employers and targets for getting people with autism into work. I hope that the Minister can tell us how the Government intend to respond.
Finally, there is the simple question of awareness, which we have touched on a number of times this afternoon, with contributions from my hon. Friends the Members for Bristol West (Thangam Debbonaire), for Cardiff West (Kevin Brennan) and for Coventry South (Mr Cunningham), my right hon. Friend Mr Howarth, the hon. Members for Luton North (Kelvin Hopkins), for Berwick-upon-Tweed (Mrs Trevelyan) and for Cleethorpes (Martin Vickers), and my hon. Friend and neighbour Mr Sheerman. The research shows that only a small minority of people with autism feel that the condition is widely understood. The work of the charities and other organisations in this area is commendable, and hon. Members who have spoken today have done their bit to raise awareness. Will the Minister tell us how the Government will do the same?
The testimonies that we have heard from Members this afternoon starkly show just how crucial it is that more is done on the issue. The power to make meaningful change is in the Government’s hands. I hope that they have listened and will act accordingly.
I will start by heaping praise on my right hon. Friend Dame Cheryl Gillan for securing this important debate and her incredible work over many years to raise the awareness of autism both within and outside this place. It is thanks to her ground-breaking private Member’s Bill on autism that we now have an adult autism strategy. Next year, it will be 10 years since her Bill became the Autism Act 2009, transforming services for autistic adults and having a huge impact on public awareness of autism. That is entirely down to her.
I am not going to give way too much because I have a lot to get through, but I will definitely give way to my right hon. Friend.
I thank the Minister and other Members who have acknowledged that I have had a part to play in this. She is sitting next to my hon. and learned Friend Robert Buckland; he and Members of all parties have contributed to this work. I assure the Minister that no one MP can do this on her own. My tribute is to all those people who have done the hard work and the heavy lifting.
My right hon. Friend is as honourable and modest as ever. I also want to thank all the other Members who have worked long and hard on this over a number of years, and those who have contributed so beautifully today. This high-quality debate has included strong personal stories and great examples of fantastic constituency work.
I thank the Backbench Business Committee for enabling this debate to happen during World Autism Awareness Week. It has given us the opportunity to draw much-needed attention to the challenges that autistic people, and their families and carers, face on a daily basis. Members who have spoken are absolutely right to say that we need to understand more about autism across all sectors of society and in all parts of government. I share their determination to address this important issue.
Since the introduction of the autism strategy in 2010, it has done much to improve the lives of those living with autism, but we know that there is still much to be done. As hon. Members may be aware, we have recently put in place revised governance arrangements to continue taking forward the strategy. On Monday I had the pleasure of chairing the first annual accountability meeting, where I heard from key stakeholders, self-advocates and partners about the challenges facing autistic adults across England and how we can keep making progress in realising the ambitious autism strategy.
May I make a little bit of progress? I will take questions if I manage to get through this wad of paper.
In reference to a point made by the hon. Members for Huddersfield (Mr Sheerman) and for Cardiff West (Kevin Brennan), there were representatives at that meeting from all the other Government Departments, including the Department for Transport, the Department for Work and Pensions, the Department for Education and the Home Office. The hon. Gentlemen were absolutely right to point out that this subject reaches all Government Departments. It was clear that the complexity of autism and the multifaceted nature of the needs of those on the spectrum pose particularly challenging questions. Frequently this results in regional disparities that are far too wide in autism diagnosis waiting times and in the services someone can access once they have a diagnosis. Some areas are doing well, but others are not, and we need to ensure that good practice is identified and shared across all areas.
Many Members have highlighted particular challenges that autistic children face in school. My hon. Friend John Howell explained exactly why it is important that autistic children are well supported in their education if we are to raise their attainment and improve their life chances. The Government congratulate the all-party group on autism on its report about education in England, which was published in November. It is really important that support for young people with autism is targeted where it will be most effective. The recommendations of that report are being considered by the Department for Education and will be key to its plans. As my hon. Friend said, all teachers are now trained to help children with conditions such as autism as part of their teacher training. Since 2011, we have funded the Autism Education Trust to provide autism awareness training for more than 150,000 education staff—not just head teachers, teachers and teaching assistants, but support staff such as receptionists and dinner ladies, thereby encouraging a whole-school approach to supporting children.
Exclusions were mentioned by a number of Members, including my hon. Friend Robert Halfon, my hon. Friend Martin Vickers and the hon. Members for Cardiff West and for Bedford (Mohammad Yasin). We are funding work via the Autism Education Trust to provide advice to parents and professionals on trying to cut down the number of exclusions. We have introduced the biggest reforms to special educational needs and disability support in a generation; introduced education, health and care plans that are tailored to a child’s needs; and given councils £223 million extra funding to help them to introduce these significant reforms.
Diagnosis was mentioned by many hon. Members. Adults and children should not have to face long waiting times for autism diagnosis. We will continue to work with partners to try to address these long waiting times. This is also a key part of the task and finish group that is being led by NHS England. We have included autism indicators in the mental health services dataset, with data beginning to be collected from
I have previously described my hon. Friend Mrs Trevelyan as a force of nature, and today we saw another example of that. She spoke about regional centres of excellence—a fabulous idea—and said that there is nothing wrong with people with autism; they are just different. I had the pleasure of meeting her different and fabulous son James for an evening in Edinburgh last summer. I would hate to be on the receiving end as somebody she encountered in a shop giving her fine young gentleman a hard time.
I am grateful to the Minister, who is making an excellent speech. I just wanted to get her to say something about the report we launched yesterday—I know she could not make the event—about people selling harmful interventions to individuals on the autism spectrum. Does she believe that that is a problem?
The hon. Gentleman is absolutely right to raise this; I know that he has done so at Health questions in the past. The Department of Health and Social Care does not in any way condone any of the so-called cures or remedial substances that are being proffered. We do not think that any of them are any good whatsoever.
Last year, NICE’s indicator advisory committee recommended including autism diagnosis in a menu of GP indicators. A review of the quality and outcomes framework is being undertaken by NHS England, and it will conclude later this spring. NHS England has confirmed that the GP autism register will be considered in the context of this work.
We know that there are sometimes issues with the health gap. Helen Hayes raised the case of her constituent, Matthew, which shows how horrible things can be when they do go wrong. I will be very happy to meet her to ensure that Matthew’s experience is not in vain.
Many Members raised issues around employment. We know that having a job is not just about earning a living, as it also contributes to people’s wellbeing, gives them a sense of belonging and purpose, and builds self-confidence and self-esteem. Through the Disability Confident scheme, the Department for Work and Pensions is engaging with employers and helping to promote the skills, talents, abilities and value of people with autism. Additionally, Access to Work has a hidden impairment support team that gives advice and guidance to help employers to support employees with conditions such as autism, to offer eligible people an assessment to find out their needs at work, and to help to develop a support plan.
My right hon. Friend the Member for Harlow, the brilliant Chair of the Education Committee, who is passionate about apprenticeships, made a brilliant point about the need for more focus on ensuring that children do not drop off the edge when they leave school. We will certainly take that forward. In December, the DWP published “Improving Lives: The Future of Work, Health and Disability”, which set out how it will deliver on its ambitious plan to help 1 million more people with a range of disabilities into work.
On the civil service becoming an autism-friendly employer, we have committed to support the autism exchange programme, and the civil service is working with Ambitious about Autism to provide work placement opportunities for young people.
On access to democracy, under Representation of the People Acts, polling stations must be as accessible as possible to disabled voters. We recognise that there might be specific challenges, and we will explore with the Electoral Commission what further adjustments can be made.
A few Members talked about the criminal justice system. The Ministry of Justice is working with the Home Office and the Crown Prosecution Service to develop a guide to help officers to identify people with autism. That is now included as part of all police training. NHS England has also issued a revised liaison and diversion specification, which includes autism. To date, eight prisons and young offenders institutions, including Feltham, where the programme started, are part of the criminal justice accreditation scheme, and another 35 are currently looking at the process.
I am really disappointed to hear examples from Members across the House of bad experiences with jobcentre staff, PIP, work capability assessments and so on. All healthcare professionals conducting work capability assessments and other things receive extensive training regarding autism spectrum disorder as part of their new entrant training. All work coaches in jobcentres receive the same training, but I will pass those comments on to the Department for Work and Pensions.
Thangam Debbonaire is clearly a true champion for autism in her local area, and I give her massive credit for what she does. She mentioned loneliness. I will be working closely with the Under-Secretary of State for Digital, Culture, Media and Sport, my hon. Friend Tracey Crouch, in developing the cross-Government strategy on loneliness, which is supported by the Prime Minister.
We have heard wonderful examples of great community projects offering fantastic support in different Members’ local areas, and I should give a shout-out to the incredible Marvels and Meltdowns in my constituency—a blatant plug.
Patricia Gibson mentioned poor mental health. Obviously that is not an inevitable consequence of autism, but if someone has autism and a mental health problem, it is essential that they can get the appropriate help and support.
Dr Cameron highlighted worrying figures about suicide. We are committed to tackling suicide in every community and for everyone who is at risk, and we updated the national suicide prevention strategy last year to strengthen delivery on key areas.
I want to join Paula Sherriff in paying tribute to the National Autistic Society and its Too Much Information campaign, Autism Alliance, Autistica and various other charities throughout the country that do fantastic work to raise awareness and offer support.
We all want to live in a world and in a country where autism is never a barrier to the opportunity afforded to others. World Autism Awareness Week enables us to continue keeping this issue high on the agenda and in the minds of policy makers, professionals and members of the public alike, which is where it should be.
Question put and agreed to.
That this House
notes that World Autism Awareness Week 2018 runs from
believes that there is a lack of understanding of the needs of autistic people and their families;
and calls on the Government to improve the support provided to autistic children in school and to autistic adults in or seeking employment, to reduce waiting times for autism diagnosis, and to promote a public awareness campaign so people can make the changes necessary for the UK to become autism-friendly.