(7 years, 12 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Mrs Cheryl Gillan (Chesham and Amersham) (Con)
I beg to move,
That this House notes that World Autism Awareness Week was held from 2 to 8 April; believes that there is a lack of understanding of the needs of autistic people and their families; and calls on the Government to improve diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.
We were on recess during World Autism Awareness Week. I want to put on record my thanks to the Backbench Business Committee, which has granted this debate, and to you, Mr Speaker, for indicating that you may be willing to extend the debate because of the demand from people who want to speak in it. I know that there are conflicting Committees going on in other parts of the House, which will cause some problems for people who want to speak in the debate.
I also put on record my thanks, as chairman of the all-party group on autism, for the genuine cross-party view on the subject, and for the help and support I have received from Members of all parties. It is commendable that the House should work in such a way. It is nice to record that the all-party group on autism is, I think, one of the all-party groups that has the largest number of members. That shows the significance of this topic.
In 2015 the National Autistic Society carried out a YouGov poll and found that more than 99.5% of people in the UK had heard of autism. That means that, more or less, we are all aware of autism, which is a jolly good thing. However, just 16% of autistic people and their families whom the National Autistic Society spoke to as part of its recent research said that the public had a meaningful understanding of autism. Despite all the progress that has been made, there remains an enormous gulf between awareness and understanding. The key point here is that although more understanding may seem like a soft issue that everyone across the House can easily get behind without much thought, it is understanding that goes to the core of what people and families who live with autism every day have to deal with.
Catherine West (Hornsey and Wood Green) (Lab)
I congratulate the right hon. Lady on all the work that she has done over the years on this crucial subject. She mentioned the National Autistic Society, and I praise it for its wonderful work. Does she agree that stigma around autism among the general public, in educational institutions and among many employers still holds all of society back?
Mrs Gillan
That is true to an extent, but I want to balance that by saying that in some areas, many people who are on the autism spectrum are welcomed into the world of work, by GCHQ and other organisations that can take advantage of their unique capabilities. The hon. Lady is right in many areas, however, hence the debate.
Kevin Brennan (Cardiff West) (Lab)
I pay tribute to the right hon. Lady for the work that she does. I also thank the Minister, who met some constituents of mine this week; they do not wish to be named in public. The right hon. Lady raised the question of awareness. Does she agree that it is important to have such awareness in our criminal justice system? Adults with autism, in particular, sometimes come into contact with the criminal justice system, and there is an inappropriate level of understanding of issues that may have led to that happening.
Mrs Gillan
That is an astute observation. Later in my speech, I will come to the criminal justice system. I hope to set the scene across a range of areas, because there is not a part of government that autism does not touch. There are a range of implications, particularly in the criminal justice system, in which I believe people with autism are disproportionately represented in many areas.
For people and families who live with autism every day, improving understanding is fundamental to ensuring good levels of health and wellbeing and an ability to participate in society. The implications are all too real. The National Autistic Society survey that I mentioned found that 79% of autistic people feel socially isolated; half of autistic people and families sometimes do not go out because they are worried about how the public will react to them; and 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.
To help to address the lack of understanding and tackle social isolation, the NAS has, as many Members know, launched a three-year campaign called “Too Much Information”, during this year’s World Autism Awareness Week. I was glad to support the launch of that campaign in Parliament. The cornerstone of the campaign is a short film, shot from the point of view of a child with autism, which tries to give the viewer some sense of what it is like to live in the overwhelming world that someone with autism lives in every day. Many parliamentary colleagues joined me for the event, and I am glad to report—this is almost unbelievable, but it is a very good sign—that, to date, the video has been viewed online more than 50 million times. That film marks only the start of the campaign, however, and there is clearly much more that must be done to help tackle social isolation among the nearly 80% of people on the spectrum who say that they feel isolated.
Over the years, Government have shown huge leadership on the awareness of other issues, with more than £2.3 million spent on dementia awareness and £20 million on mental health awareness. [Interruption.] Thank you so much. I wish it was gin.
Mr Walker
While my right hon. Friend avails herself of a relieving glass of water, may I ask her whether she agrees that organisations, such as ASPIE in my constituency, that help people with Asperger’s and people on the spectrum to socialise play a really important role in helping to build their confidence and ensure they have the support they need to go into what can often be a very threatening world?
Mrs Gillan
I am doubly grateful to my hon. Friend. He is absolutely right that the achievements of such organisations and programmes should be congratulated by all of us in the House.
Action is needed for the 700,000 people in the UK who are on the autism spectrum and their families. I am aware that the Government have invested £325,000 on autism awareness work, but that is a drop in the ocean if our aim is to ensure, as I believe it should be, that this generation of autistic children grows up in a world that understands them.
At this point, I want to pay tribute to the Minister. Quite honestly, he has attended every autism meeting and function that I have asked him to attend. He shows a great deal of understanding of this area, so I am looking forward to a really meaningful response from him when he winds up the debate at the end of the afternoon. More leadership is definitely needed from the Government.
Julie Cooper (Burnley) (Lab)
I am very grateful to the right hon. Lady for the work she does on this really important subject. Does she agree that it is extremely worrying that only 15% of adults suffering with autism are in full-time employment? Would it be right and proper for the Government to support the work of organisations, such as Ambitious about Autism, to help them in the transition into work that could be so crucial for so many?
Mrs Gillan
The hon. Lady is absolutely right. I will mention some of the organisations involved at the end of my speech. Ambitious about Autism is just one of the many organisations that are trying to help people with autism into employment. I want to mention that later as well, because it is very important.
To build on the intervention on the criminal justice system by the hon. Member for Cardiff West (Kevin Brennan), I should say that I recently visited Her Majesty’s young offenders institution in Feltham to see at first hand how a deeper understanding of the issues and how some adjustments in the physical environment can help people on the spectrum. The prison recently underwent accreditation from the NAS, and the prison staff’s enthusiasm in, and dedication to, helping the young people in their charge is absolutely admirable and really wonderful to see. I very much hope that members of the all-party group will go there on a visit to see exactly what Feltham has done. Custody can be a really traumatic experience for anyone, but without specific adjustments for those with autism, it is much harder for them to engage in their own rehabilitation. Familiarising staff with autism, allowing prisoners to use communal areas at quieter times, and reducing posters and notices to prevent over-stimulation are just some of the small things that can make a significant difference to the experience of autistic prisoners in custody.
I now want to pay tribute to the Minister for prisons, the Under-Secretary of State for Justice, my hon. Friend the Member for South West Bedfordshire (Andrew Selous), who wrote to every prison in this country asking them to undertake autism accreditation. Currently, over 20 have been in touch with the NAS and its accreditation team and, alongside Feltham, four are going through the process. We want this kind of Government leadership and we want such leadership to be sustained. When I ask the Government to do more on the awareness and understanding of autism, I expect to get this type of response. Far more could be done in the criminal justice system, particular in the Courts Service.
Following the example of Feltham, the public sector can and should do much more to make sure all its services and buildings are more accessible to autistic people, so that they and their families can feel confident that they can visit public buildings and use public services in the same way as everyone else. For example, I was very pleased at the weekend to read that Asda is piloting a “quiet hour” in one of its stores in Manchester, when it will turn off escalators, screens and music for an hour to create a more comfortable shopping experience for those with autism. That is to be commended.
At this point, it would be remiss of me not to mention that Parliament is itself working, under the leadership of Mr Speaker, towards an autism access award and to make sure that autistic visitors to our place of work feel confident that they will be understood and treated well right across the board. In the light of this positive work on the parliamentary estate, I hope the Minister will meet me and representatives from the all-party group and the NAS to discuss how, together, we can build on the early successes of the “Too Much Information” campaign and ensure that all public buildings become accessible to people on the spectrum.
I want to turn to one of the biggest issues facing people with autism and their families, which is the time it takes to get a diagnosis in the first place. I can see from the nods that that rings a bell with everyone in the Chamber. Recent research suggests that, on average, adults have to wait more than two years for a diagnosis. For children, the figure stands at 3.6 years. An autism diagnosis can be life-changing, explain years of feeling different and help to unlock professional advice and support. Government guidelines say that a diagnosis should not be a barrier to putting in place the right support, but 58% of people on the spectrum have told the NAS that a diagnosis led directly to getting new or more support. How can the right support be identified without the clarity of a diagnosis?
Helen Whately (Faversham and Mid Kent) (Con)
It is fabulous that we are having this debate today. I want to back up my right hon. Friend on her point about the delay in diagnosis. I have spoken to many families in my constituency who have waited for months for a diagnosis for a child, while the child could and should have been receiving help for their enormous difficulties, but months if not years have been wasted. Yet we cannot even get the data about diagnosis from either the county council or the NHS. Not only are there delays, but there is a lack of transparency about waiting times for a diagnosis.
Mrs Gillan
Absolutely. It is clear that, despite the best intentions of the Government, getting such a diagnosis is still crucial, as my hon. Friend says.
Mrs Gillan
I will give way for the last time, because I must make some progress.
Norman Lamb
May I join in with the overwhelming tributes that have been made to the right hon. Lady for the work that she has done on this incredibly important subject? I do not know whether she saw the in-depth report in The Economist a couple of weeks ago. It reported that a Swedish study has found that the cost of lifelong care for someone with autism could be cut by two thirds with early diagnosis and treatment. Again, the moral case and the economic case for this are overwhelming.
Mrs Gillan
I agree. NHS England should collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known by their GP to have autism. It should also ensure that waiting times standards on mental health, which are currently in development, reflect national guidance that no one should wait longer than three months between referral and being seen for diagnosis. The Government must share this commitment and ensure that NHS England meets its aims. Timely access to an autism diagnosis should be written into the Government’s mandate to NHS England.
I want to touch on autism and mortality. A recent Autistica report highlighted distressing findings from research in Sweden. The research found that autistic people, taking the population as a whole, have a lower life expectancy than the overall average. The research from Sweden shows that autistic people are at risk of dying younger from almost every cause of death. On average, this is 18 years earlier than the general population. For autistic people with a learning disability, the gap is even larger. The research shows that autistic people with a learning disability in that country die on average 30 years before their time. It also shows that autistic people who also have a learning disability are more likely to die early from epilepsy, and that those without a learning disability are at greater risk of suicide. It is worth remembering that the Swedish healthcare system is different from ours, but given the seriousness of those research findings, it is vital to find out whether they also apply in the UK, and if so, to understand the reasons for that. The Autistica report calls for this to be investigated as a matter of urgency, and I urge the Government to heed that call.
I want to comment briefly about the autism hospital passport, which has been endorsed by the Department of Health. The passport is designed to help people on the autism spectrum to communicate their needs to doctors, nurses and other healthcare professionals. It has been developed by Baroness Angela Browning in collaboration with the NAS. The motivations for starting the project were simple: when it comes to healthcare, the passport enables people on the spectrum and their families to have a much better experience of their interaction with the health service and to gain better, more timely and more fitting healthcare at the right time and in the right place.
I want to touch on various areas that I hope other Members will pick up, so I now turn to education. In specialist schools—the NAS is about to open a new one in the Epping forest area, supported by the Anderson Foundation—we have no fears about teachers’ ability to understand autism. But the training that teachers receive on autism has to be looked at carefully. Nearly 60% of children who responded to a survey said that the single factor that would make school better for them was if teachers understood autism. Teachers agree, and they want that training. A 2013 survey by the NASUWT found that 60% of teachers believed that they did not have enough training in autism. I am aware that work is going on to develop a new framework of core content for initial teacher training courses, but we need to make sure that no teacher enters the classroom without the tools they need to support those in their charge.
An intervention touched on employment, so I turn now to what children on the spectrum want after they leave education. They want the same things we all want out of life: stable, secure and fulfilling opportunities that allow them the same opportunities to lead independent lives. However, currently too few people on the spectrum enjoy the opportunity to find a job to help them maintain that independence. The Government have pledged to halve the disability employment gap—that was welcomed by Members on all sides of the House—and we await the Government’s White Paper, to be published soon; we also note recent assurances from the Secretary of State for Work and Pensions that that is a key priority for him. However, research by Scope has shown that the disability employment gap has remained static over the past year. Clearly the Government cannot rely on an improving economy alone to fix the issue. More will need to be done to close the gap.
The autism employment gap is even worse. The latest data indicate that only 15% of autistic adults are in full-time paid work at all and that 26% of graduates on the autism spectrum are unemployed, by far the highest rate of any disability group. The NAS hears from autistic people that the Government’s mainstream generic programmes do not feel relevant to them and are not addressing the specific and long-term needs of people with autism.
More autism-specific programmes are needed. Research shows them to be more successful. For example, research into one specialist support scheme found that 70% of adults found work when supported by autism professionals. The all-party parliamentary group on autism plans to return to that work later this year. In the meantime, I have several questions. Will the Government’s disability employment White Paper include proposals for ensuring that people on the autism spectrum can access specialist support? Will the Minister report on progress by condition in seeking to halve the disability employment gap, so that low employment rates of people with conditions such as autism can be specifically tackled? Crucially, will he ensure that the new work and health programme records whether someone on the programme is on the autism spectrum?
Autism touches so many areas of Government work that it is difficult to address them all today. For example, I have not discussed social care, mental health issues or benefits. I know many colleagues want to speak and so I do not want to take up too much more time. In summing up, I return to public awareness. Survey after survey of people on the spectrum tells us that better understanding of the condition among both the public and professionals would be the one thing that would help them to feel more secure and allow them to have fulfilling lives. People on the spectrum are reasonable, and do not expect an ordinary member of the public with no knowledge of the condition to be aware of technical details about the diagnostic criteria for autism. However, they feel that just a little more understanding, compassion and awareness would make all the difference to their lives. If we see a child having a meltdown in a supermarket or an adult acting a bit differently on a train, we should stop and think for a moment. They may be autistic, and need our kindness, not our judgment.
I thank all the organisations that have contributed to the knowledge of Members here today, in particular those charities and groups with whom we work closely, including the National Autistic Society, which provides the secretariat for the APPG, Ambitious about Autism, Autistica and the Children’s Services Development Group. I also thank the many individuals who have got in touch with me, and with all other Members here, in the past week. I hope that together we can improve the lives of those with autism and make some real progress in this area.
Several hon. Members rose—
Madam Deputy Speaker (Natascha Engel)
Order. We will start with a time limit of six minutes and see how we get on.
Jon Cruddas (Dagenham and Rainham) (Lab)
Last Saturday, anticipating today’s debate, and in his customary elegant way, Guardian columnist John Harris wrote an excellent summation of some of the issues around autism. He ended his piece with these words:
“Our culture still too often couches autism in terms of pity or fear as an essentially Victorian sensibility lingers on. But we are moving towards a new world in which autistic people and their families advocate for themselves. For them, the current noise about autism perhaps highlights an inevitable phase of any struggle against ignorance: the point at which you know you’ve come a long way but still have light years to go.”
When we consider the debates and the legislation passed in this House regarding autism, we understand that we, too, have come a long way, and a significant reason for that has been the work of the right hon. Member for Chesham and Amersham (Mrs Gillan). I therefore congratulate her on securing this debate and on all her work over many years in this area, not least as chair of the all-party parliamentary group on autism.
In my short contribution I will focus on a few issues. The first is that of diagnosis delay, something that every Member in this House will have countless examples of. It is the focus of the National Autistic Society’s brilliant campaign and is flagged up in the motion. As we have heard, for children the average diagnosis time is now some three and a half years. In my experience, from talking to parents, carers and experts, that is partly down to insufficient training among NHS people and cost pressures within the system. The reality for parents is that if they do not know where to turn and are without a diagnosis, there is not much that they can access.
Secondly, I will focus on what appears to me to be the biggest single problem, which is that people have to deal with a system of immense complexity, which is buckling under the cuts and has no single point of contact marked “autism”. For many, the system is simply bewildering and often very scary.
Finally, I want to highlight the campaign work being done by amazing people at local level, including my constituent Fay Hough, who only last week led a large demonstration outside Havering town hall demanding better services and support for autistic people and their families.
I will also make a couple of points about the nature of research into autism in the UK and how it might be developed, to help both our overall awareness and, most importantly, autistic citizens and their families. Recent figures suggest that roughly 1% of the UK population has an autism spectrum condition, a twentyfold increase in the 50 years since the first epidemiological study. Given that, we need more and better research.
We can detect a dramatic expansion in autism research, especially in the US. For example, the 2006 Combating Autism Act authorised some $950 million for autism research over a five-year period to develop screening, early diagnosis and children’s intervention strategies. It has been estimated that in 2010 alone, investment in autism research in the US exceeded $400 million.
Here in the UK, research from the Centre for Research in Autism and Education at University College London suggests that public and private funding organisations invested some £21 million into autism research between 2007 and 2011, amounting to a significant increase. The question is whether that research is focused on the correct issues and whether it tallies with the needs of autistic people and their families.
I refer to an article in Autism, “What should autism research focus upon?”, which suggested that
“research activity should be broadened to reflect the priorities of the UK autism community, focusing in particular on research that helps people live with autism.”
It would appear obvious that research should maximise its impact on the life experiences of those affected—our constituents—so why might this apparently self-evident objective not be the case?
When we look at the debate about autism research, there appears to be a tension between two types of project. On the one hand, there are projects that focus on what we might call the basic science of autism—on neural and cognitive systems, genetics and other risk factors. On the other hand, there is research focused on the understanding and promotion of how families function and the services those families need. Evidence suggests that that tension has been identified in the US and that as a result there is a growing diversity in research funding, to the direct benefit of autistic citizens and their families.
In contrast, evidence from the Centre for Research in Autism and Education suggests that that diversification of funding has not occurred in the UK, and that projects in the areas of biology, the brain and cognition outstrip all other areas of autism research by a vast margin, in terms of both the numbers of projects and the total research grant. The effect is that very little research funding is directed into identifying effective services for autistic people and their families—that is, research on services, treatments, intervention and education.
Obviously, that is not just an academic issue, but relates directly to all the questions about autism awareness discussed this afternoon. Research by the Centre for Research in Autism and Education suggested that the families of autistic people value research into the underlying causes of autism, but need a more balanced distribution that redirects attention on to their daily lives, their needs and the services afforded to them.
Joan Ryan (Enfield North) (Lab)
I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate, and my hon. Friend the Member for Dagenham and Rainham (Jon Cruddas) on his powerful speech. Durants school is a secondary school for young people with autism in my constituency. Its governing body has written to me to express concerns that with the Government consultation on changes to the national school funding formula—including that for high needs—there will be a levelling down and funds will be drawn away from those schools, which would be very damaging.
Jon Cruddas
The issues that some of us planned to raise in the debate that was cancelled on Monday evening concerned precisely some of the pressures on the system, especially for special needs children. That takes us back to a point that I wished to raise about problems with diagnosis, entry points into the system, and the cuts that are being experienced. Those things are all linked to the research base around autism and effective public policy making, and to the concrete problems of commissioning services, the decision-making of front-line staff, and the dilemmas facing autistic people and their families—it is basically the existing evidence base for decisions on autism and public service provision.
I look forward to a reorientation of the research priorities for autism to balance out research funding and projects, as appears to have been achieved in the US. We need to balance scientific research with under- standing the needs of the most effective support offered to autistic citizens and their families, as well as greater co-ordination with autistic research, which again appears to have been achieved through strategic oversight in the US. Finally, we need the involvement of autistic people and their families in those strategic decisions—basic issues of democracy are involved in this debate.
It is great that we are having this debate today, and another sign of progress. To return to the words of my friend John Harris, whose family have tried to navigate through this system for many years, we appear to be at a point at which we know we have come a long way, but we still have light years to go.
Pauline Latham (Mid Derbyshire) (Con)
I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. I realised the importance of this subject just before the last election when I met a group of parents in my constituency who were talking about the problems that they had experienced. I had previously met people with autism, but I had not understood the pressures that parents and families are put under by the diagnosis, or even by not having a diagnosis of their children’s problems.
I met people who had never received a diagnosis and did not think that they would get one because nobody seemed to recognise that their child had autism. However, it was clear from what they said that the children in question were suffering from a form of autism, although it had never been recognised. Those parents were at the end of their tether and did not know where to turn to next. It is not just mums who have this problem; there were also a lot of dads at that meeting. It is not only about children; it is often adults for whom even less support is available. Whole families are affected, and autism can cause such a big strain that it affects the parents’ marriage or partnership. Many of those situations break down when people have one, two or even three children with autism.
I want to focus on local situations in Derby and Derbyshire, where I feel that the system is failing children who need the diagnosis and help in schools. Through an active group in the area—particularly in Spondon—I have met many people who have autism or whose children have autism. Last year and this year the cathedral has been lit up blue to highlight National Autism Week and to show people that there is a problem in that area. I commend it on that.
Hannah Bardell (Livingston) (SNP)
The hon. Lady is making interesting and powerful points and has mentioned the problem that people with autism face. In my office I have employed someone on the autistic spectrum. Does the hon. Lady agree that we need to change the narrative in some respects, because people on the autistic spectrum have specialist and incredible skills, and it is so important that we are positive about those people and the opportunities that they provide to society?
Pauline Latham
I completely agree. There are some incredible people with autism, but I am talking about the problems that they need to overcome to access proper education and help for themselves and their families. We must focus on the fact that it is the system, not the people, that is the problem.
In Derbyshire, families have to wait far too long between getting a referral for autism spectrum disorder and a diagnosis. Local authorities need better training for local authorities and schools regarding education, health and care plans and dealing with ASD pupils. We need a better transition from special educational needs statements to the new EHCP, and that has been badly managed in my area.
ASD behaviour and management strategies should be a mandatory part of the teaching qualification for teachers and teaching assistants. There also seems to be a lack of knowledge by parents on the legal rights and services available to them as a family dealing with autism, and we as a society need to recognise that and put out more information for those who are dealing with autism. Guidelines from the National Institute for Health and Care Excellence recommend a maximum of three months between a referral and first appointment for an autism assessment. It has been estimated that in Derby that takes closer to 12 months, which is far too long when a child is having problems with their behaviour in school and needs help now.
The Children and Families Act 2014 mandated local authorities to move from special educational needs statements, which outlined a child’s needs and how help would be given, to an education, health and care plan for each child. It also reduced the amount of time that children with special educational needs had to wait for an education, health and care plan from 26 weeks to 20. However, in Derby city the average wait is 35 weeks, and that is after people have already waited for 12 months. Derby local authority did not make sufficient plans to prepare itself for that change, and it has been on the back foot ever since. Until February 2016, only 12% of statements had become education, health and care plans, which is really unhelpful for families. That gap causes delays in the child’s educational development, and places additional stress on the families caring for them.
I believe that Derby city is now asking schools to complete the education, health and care plans even though they are not meant to, and the training provided to school staff on changes to the law has been labelled by some parents as “diabolical”. Admin staff at schools do not understand the difference between a special educational needs statement and education, health and care plans, because they often copy and paste them. Without an EHCP, children on the autistic spectrum disorder are managed by inexperienced staff with a fundamental lack of understanding of ASD.
Derby city local authority has to employ consultants who know what they are doing to help make changes, but they cost four times as much as usual school administrative staff. When all local authorities claim that they are short of money, that seems to be a complete waste of money, although if it gets the process completed more quickly for families and children with autism, it is obviously better for them. However, that money could be better spent on mental health care for autistic children and their families.
If local authorities consistently ask schools to carry out the care plans, as is happening in Derby, we must ensure that schools are given the necessary funds and training for that. There is no obvious legal accountability if deadlines are not met. We must support the parents and siblings of children with ASD. Early diagnosis is key to avoiding the mental health problems associated with not knowing what is wrong and being able to deal with it, and we must move faster to help those children and families to deal with their problems.
Brendan O'Hara (Argyll and Bute) (SNP)
I pass on my sincere thanks to the Chair for indulging me by calling me so early in the debate. I have to return home to attend to urgent constituency business this afternoon. I also congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this very important debate.
As we have heard, autism is a spectrum condition, meaning that no two autistic people display the same characteristics. Some people with autism live relatively independent lives, while others, at the other end of the spectrum, might need a lifetime of specialist care and support. That demands that every single person living with autism be treated as an individual and that society affords each individual the respect and dignity they deserve. I have no doubt that we, as a society, aim to do that, but the question is: do we actually do it?
I recently met the National Autistic Society at the launch of its “Too Much Information” campaign, designed to help people recognise autistic behaviour and better understand how they should respond to it. It is an excellent report. It sometimes makes for uncomfortable reading, but I commend it to all Members. In it, the society published figures from a wide-ranging survey it had commissioned to look at public attitudes towards those living with autism. Its findings suggest that we, as a society, have a long way to go in affording people living with autism the respect and dignity they deserve.
Although almost every person in the United Kingdom had heard of, or was aware of, autism, only a fraction actually recognised what it meant. There is a chasm between public awareness and public understanding of autism. It is this lack of public understanding that causes great distress for those living with the condition and their families. The right hon. Lady has given us some of the findings, but they are worth repeating: 87% of parents had experienced people stopping and staring at their children while they were displaying autistic behaviour and 74% had experienced public expressions of disapproval at their children displaying autistic behaviour. Importantly, the NAS also spoke to people living with autism, and what it discovered was pretty depressing: 84% of people living with autism felt they were judged by the rest of society as being “strange”.
Jo Churchill (Bury St Edmunds) (Con)
Would the hon. Gentleman agree that that reaction to people in our society with autism and their families leads to a fear of going out, as my constituent Maureen said, which, particularly for autistic children transitioning into adulthood, can in turn lead to social isolation for them and often their primary carer, which is not adequately recognised across the piece?
Brendan O'Hara
The hon. Lady is absolutely correct, and it is something I will touch on in a moment.
Nearly 70% of people living with autism believe that the public see them as antisocial and almost one third have been asked to leave a public place for displaying behaviour associated with their condition. As a result, as the hon. Lady just alluded to, four in every five people living with autism in the UK feel isolated from society and half do not go out for fear of how people will react to their condition. As I said, those statistics make for pretty depressing reading and should force us all to look at our behaviour and question what we are doing, as a community, to our fellow citizens that makes them prefer social isolation to the way they are treated by the public, ourselves included.
It is not all bad news, however, as the NAS report also contains some good news. Its research shows that with greater knowledge and better understanding, the general public will behave with much greater empathy towards autistic people.
Roger Mullin (Kirkcaldy and Cowdenbeath) (SNP)
One piece of good news is that many areas of Scotland are blessed with specialist speech and language therapists who well understand the condition and give particular support in schools, for example, to those with communication challenges.
Brendan O'Hara
I thank my hon. Friend, who is a specialist in this area, for his intervention, and I commend the great work done throughout Scotland—and, I assume and hope, the UK—in that field.
As I say, there is much to look forward to and to be hopeful about. We have to get the key messages out to the public, and those key messages are: people with autism might need extra time to process information and respond to people; people with autism can become anxious in social situations; people with autism can become anxious when faced with unexpected changes or unscheduled events; people with autism can often be hyper-sensitive to noise, light, smell or colour; and, you know what, when things get too much, people with autism can have a meltdown. Deal with it!
To conclude, I will quote from the Scottish Government’s autism strategy. Their vision is
“that individuals on the autism spectrum are respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives.”
That is something around which the entire House can unite.
Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)
I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on her tireless work over many years to raise awareness of autism and to start to change Government priorities around those in our country who are not neuro-typical beasts.
My hon. Friend the Member for Bury St Edmunds (Jo Churchill) and the hon. Member for Argyll and Bute (Brendan O'Hara) have described movingly some of the experiences of families and those who suffer from autism. As my right hon. Friend’s Autism Act 2009 was going through the House, I was battling to find support and a diagnosis for my eldest young son. It was evident to me that my very bright and articulate son was not like other boys of his age. He had an extraordinary level of concentration and extremely good reading skills and could converse at length with adults in a most unusual way, but he was also very anxious, fearful of noise and bright lights and unable to cope with anything unexpected in his day—the slightest change to the time we left the house, and all hell broke loose.
Once my son started his schooling, at the age of three, his young life and day-to-day experience became increasingly more challenging, and school life, which demands conformity, became something he was entirely unable to cope with. We struggled on for several years, because no one seemed to have any ideas; teachers said nothing except, occasionally, “Well, come and pick him up early if it gets too much”, “Is it all right if I call if he’s getting difficult in class?” or “Will it be all right if I don’t feed him with everyone else because it seems to be a problem in the canteen?”. I was just a mum with a little boy who seemed to have so many talents but could not cope with daily life.
Eventually, my GP, a wonderful man, referred us to a child psychologist in Newcastle, whose failure to correctly diagnose my son as autistic was nothing short of shocking. Not only did he fail to see what was becoming obvious to our family and our friends, who were trying to support us, but he tried to medicate my son with Ritalin, claiming that he suffered from attention deficit hyperactivity disorder—two behavioural traits entirely absent from my son’s behaviour. The doctor had failed to speak with my son’s teachers, having claimed that he had, before making his diagnosis, and it was only because I fought back against the medical profession’s failure that my son was not inappropriately drugged.
Thanks to huge financial support from my family, we eventually found a team of paediatric doctors based at Great Ormond Street hospital in London, 350 miles from our home in Northumberland, who quickly diagnosed my boy as an Asperger’s syndrome sufferer. We received support, understanding and guidance from these wonderful specialists who empowered us, James’s parents, to challenge school rules and regulations in order to get the changes to his learning environment so that he could once again enjoy and thrive in it. We have encountered two or three teachers for whom medals would be inadequate to recognise how they have put themselves out and learned themselves what it means to be an autistic little boy so that they can help other children coming through the system afterwards. As I say, medals will never be enough for them.
Without good friends, good luck and financial support, I know that our son would have fallen out of school by the time he was six or seven. The pressures that normal life put on our autistic children should not be underestimated. No right-thinking person would ask a child with a broken leg to run up the stairs, but the invisibility of autism means that these children are asked to do things that, given their hypersensitivities or gaps in neurological connectivity, simply ask too much of them.
Pauline Latham
My hon. Friend’s son was extremely lucky because he had a mum who was prepared to fight and had the ability to fight. There are many parents like her who will fight for their children, as most parents want to do. However, some parents do not have the ability or the confidence to do that, and these are the ones that are really being let down by the system.
Mrs Trevelyan
I absolutely agree with my hon. Friend. This is part of the reason I am here. I decided that advocacy was needed for those who are unable to access the system, who do not know how to fight back or who are too honest and quiet folk trying to get on with their day, muddling through it with difficult jobs and complex family environments. For such people it is too hard to fight what still today seems to be an implacable system in so many parts of our country.
The legislation of my right hon. Friend the Member for Chesham and Amersham—the Autism Act 2009—has begun to change attitudes towards autism, and I am now 10 years on from the battles I had to fight. The general population is becoming aware, slowly, of this invisible disability. The challenge is its invisibility—until it becomes visible through a crisis.
Many of our greatest artists and scientists have been on the spectrum—men and women who see the world differently from those of us who are “neuro-typical”, as my son always refers to me—mostly as an insult, I suspect, but I take it as it is! As a nation, we should value those who offer an understanding of our world that we neuro-typical folk simply do not have. They are vital to our growth as a nation, both culturally and economically.
The genius of the great Alan Turing brought us the computer—possibly the greatest leap since the steam engine—yet he was shunned and misunderstood throughout his life. We can read about his school years, which were truly awful. The damage that society inflicted on him through a lack of understanding and a blatant disregard for his difference in character highlights what we must reverse, 70 years on, to ensure that no child on the autistic spectrum is lost to us or our nation.
Small changes to the school environment and support for families that are bringing up autistic children with day-to-day tasks, which can reduce their stresses, can lead to positive and thriving outcomes for these wonderful members of our communities. Most importantly, we need a team of paediatric experts across every part of our country who can diagnose autistic children early on, and we need councils and schools that are trained and flexible in supporting these children to fulfilling lives.
I recently met a family in my constituency with three boys, two of whom have been diagnosed. I also have in Alan Carrick, at Northumberland County Council, a passionate advocate for all our special needs children, and he is particularly interested in supporting those on the autistic spectrum. It is difficult for him to meet the needs of each and every autistic child because there is not enough flexibility for him to provide preventive and creative solutions for individual families, which would provide practical support.
If we can reduce the day-to-day pressures on parents through low-cost early interventions, we will increase the chances of these families staying together. There are obvious long-term, value-for-money arguments for investing in these families early on to stop long-term costs to the state of family breakdown if we fail these children and their families at the early stage. I call on our Government to encourage our councils to be creative and forward thinking in their support for our autistic children—most urgently of all by getting speedy diagnosis so that support can hopefully follow.
Matthew Pennycook (Greenwich and Woolwich) (Lab)
It is an absolute pleasure to follow that speech by the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan), and I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate and on her contribution over the years.
We have touched on autism awareness and autism understanding, but I would like to focus on something not explicitly mentioned so far—autism acceptance. As hon. Members have noted, public awareness of autism has grown dramatically in recent years, aided by a proliferation of books, media articles and not always accurate portrayals of people with autism on television and in film. This explosion of information on autistic spectrum disorders and the incorporation of individuals with autism into everyday culture has helped to familiarise people with the condition, and it is right that we celebrate that achievement.
Essential as it is, however, awareness alone has not necessarily led to greater understanding of ASDs, and it has not prevented the perpetuation of stereotypes and clichés, as even a cursory Google search would attest. Awareness alone has not keep people with autism from being abused, has not helped them find jobs and has not supported them to live independently. In short, we will not overcome ignorance and help those with autism— young and old—to live independent and fulfilling lives simply by increasing awareness alone.
I am lucky enough to have in my constituency a fantastic organisation called Greenwich Parent Voice. It is a group of exceptional parents, some of whom are in the Public Gallery today, who came together to support each other and to fight for a better deal for their children, all of whom have special educational needs or disabilities ranging from the mild to the most profound and complex. They have not only helped to deepen my understanding of ASDs and the challenges faced by those with autism and their parents, but have made it clear to me, over the course of many meetings, that what is really required is acceptance of autism.
Anyone who has sat and listened to parents or carers of children with autism or adults with autism for even a short time will know that the system in place at the moment, despite some improvements, still does not work. Whether it be through the problems in transferring from a statement to education, health and care plans, the difficulties trying to secure specialist support in the care system, or the strain of supporting children with autism into adulthood, the system causes families unimaginable levels of stress and exhaustion.
Ms Karen Buck (Westminster North) (Lab)
In common with other speakers, my hon. Friend is making a very powerful speech about awareness and understanding. Does he agree—I thought his remarks were leading towards this—that we also need to translate such awareness into some hard practical action on service delivery, and that this applies whether it be about education or housing? My hon. Friend, like others, has been dealing with parents of autistic children who are forced to share rooms or to live in 10th or higher storeys in tower blocks because housing policy does not reflect the needs of autistic children. We need to build on greater awareness, but also to resource it and turn it into some practical action that will really assist people.
Matthew Pennycook
My hon. Friend makes a very good point. I have dealt with allocation cases myself, and I agree that detailed policies need to be put in place that are based on recognition of the particular needs of autistic children and their families. As I have said, having to navigate the system as it stands can cause those families unimaginable stress and anxiety.
Those who can grow the sharp elbows necessary to navigate the system often do so at great personal cost, and, as the hon. Member for Mid Derbyshire (Pauline Latham) said, not everyone has the ability to do that. The range of challenges faced by those with autism and their families is vast, and this is not the debate for delving into any particular one in great detail.
My sense is, however, that our collective will and readiness to do something to help people on the spectrum would be stronger if more of us were not only aware of autism and understood it, but were more accepting of it as a society. If we were, I suspect we would be compelled more urgently to address the lack of suitable childcare provision for autistic children and the fact that too many schools are still not autism-friendly and too many children are not getting the support they require. We would be compelled more urgently to address the prevalence of mental health conditions in those with autism, and the isolation that young people with autism too frequently face in school. We would be compelled to address the cliff edge in support—that is what it is—that still faces autistic people in too many parts of the country as they transition to adulthood. We would also be compelled to address the huge challenges that still face autistic adults in terms of diagnosis, employment and housing.
I have no doubt that these challenges will be overcome in time, not least because more and more people with autism and their families, such as those who helped establish Greenwich Parent Voice in my constituency, are advocating more strongly for themselves. I believe that each of us here in this Chamber and in the wider country can hasten the process by working towards a society in which more of us are not only aware of autism and understand it, but accept those with it and indeed celebrate them and their contribution—not only as family members and friends, but as classmates, colleagues and members of our communities.
Mr David Jones (Clwyd West) (Con)
I, too, congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), not only on securing the debate and not only on the excellent work she does as chairman of the all-party parliamentary group, but on her wonderful work in piloting the Autism Act 2009 through the House. It was ground-breaking legislation, and it has done a tremendous amount to improve the lot of adults with autism in England. I must say in passing that it is a matter of concern to me that it has not been followed by similar legislation in Wales, but the good news is that all the parties involved in the current Welsh Assembly elections except, sadly, the Labour party have committed themselves to the introduction of a Welsh autism Bill, and I hope very much that Labour Assembly Members will work with their colleagues to bring that about.
Notwithstanding the passing of the 2009 Act, however, there is still much work to be done to ensure that people with autism and their families receive the support that they need, and, crucially, that understanding of the condition continues to develop. We must bear it in mind that autism was not formally recognised as a condition until the late 1940s, and that serious research on the condition did not begin in earnest until the 1960s. In 1970, an American study concluded that one child in 14,000 was autistic, but more recent US studies have shown that one child in 68 has some form of autism. A very recent study in Korea—the first study of an entire tranche of the school population—concluded that one child in 38 between the ages of seven and 12 had some degree of autism. It is therefore becoming increasingly clear that the condition is far more prevalent than any of us had thought.
As my right hon. Friend mentioned, it is estimated that between 600,000 and 700,000 people in the United Kingdom—approximately 1% of the population—are affected by autism. That has an economic as well as a human cost. A study by the London School of Economics in 2014 estimated that the cost of autism to the British economy was approximately £32.1 billion a year. Let me put that into perspective: the economic cost of cancer is estimated to be about £12 billion a year, while the figures for heart disease and strokes are £8 billion and £5 billion respectively.
As other Members have observed, if we had greater awareness and more understanding of the condition, more of us might recognise that people with autism are a very under-utilised resource. The recent article in The Economist that was mentioned by the right hon. Member for North Norfolk (Norman Lamb) pointed out that high-functioning people with autism often have a high degree of focus that enables them to spot patterns or errors in data that are not readily recognised by other people and that makes them attractive employees for software firms. Even people who are more significantly affected by autism can hold down jobs successfully. They often benefit from working in highly structured environments, sometimes thriving on jobs of a repetitive nature.
Employers need to realise that that resource can be tapped, which will often mean creating conditions in which people with autism can work. For example, they must understand the need for people with autism to require clear instruction. My right hon. Friend mentioned the excellent video produced by the National Autistic Society, “Too Much Information”, which shows a boy with autism being overcome by the general sounds that are experienced in a shopping centre. Employers should start to understand that people with autism may benefit from quieter working conditions: the sound of a telephone or chatter can prove distracting to the extent of being unendurable.
It is clear that more needs to be done to improve understanding of this condition. Since 2014, the Government have spent some £325,000 on limited awareness work, but that is a very small sum. A lack of understanding on the part of employers and potential colleagues presents autistic adults with a major barrier to finding and staying in work. It is therefore encouraging that the Department for Work and Pensions and the Department of Health have set up a joint unit to help people with autism to find and stay in work while also improving their health. Those are important initiatives, but, as I have said, more needs to be done.
More work is needed to try to identify the causes of autism, which are still not well understood. Research on twins suggests that genetic factors may be a cause, but it has also been suggested that there may be environmental causes, such as pre-natal exposure to viruses or air pollution. Continued research is essential. The United Kingdom currently spends just £4 million a year on autism research, compared with £590 million on cancer, £169 million on heart disease, and £32 million on strokes. World Autism Awareness Week gives us an opportunity to reflect on what is clearly a far more widespread condition than was previously thought, and to do more in our power to address it.
Natalie McGarry (Glasgow East) (Ind)
Let me add my voice to those who have already congratulated the right hon. Member for Chesham and Amersham (Mrs Gillan) on initiating the debate, and on the work she has done over the years to raise awareness of autism. Let me also say that it is a pleasure to follow the powerful and informative speeches that have been made by Members on both sides of the House, and, in particular, by the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan).
Autism is a spectrum disorder, which means that there is a wide degree of variation in the way in which it affects people. Every child or adult on the autistic spectrum has unique abilities and symptoms, and experiences various challenges. Some of the many challenges that they may face include difficulty in understanding other people’s feelings and reactions and interpreting non-verbal clues, difficulty in recognising people’s faces, and difficulty in understanding facial expressions. Children and adults with autism spectrum disorders may find it difficult to regulate their emotions or express them appropriately. For instance, they may start to shout, cry or laugh hysterically for no apparent reason. When stressed, they may exhibit disruptive or even aggressive behaviour, breaking things, hitting others or harming themselves.
The condition itself can be isolating enough without society’s reinforcing it through “othering” and stigmatism. Society itself can disable more fully than any condition. The behaviour of people on the autistic spectrum makes it very difficult for them and their families to take part in social events, or to perform everyday tasks such as shopping or using public transport. The pressure of dealing with such situations—which were described so vividly by the hon. Member for Argyll and Bute (Brendan O’Hara)—can be overwhelming for autistic-spectrum people and their families, and, as we have already heard, families often choose to exclude themselves from everyday life in their communities rather than put up with stares and whispered comments.
Autism is so poorly understood—even, in some cases, by health professionals—that children on the spectrum are often seen as being “naughty” or poorly parented. It is widely acknowledged that early diagnosis and therapy are critical to improving autistic-spectrum people’s chances of overcoming developmental delays, but the road to diagnosis is, all too often, very difficult and time consuming. Parents must fight for diagnosis in order to gain access to appropriate services. That places an added burden on stressed, sleep-deprived, struggling families who are already coping with extraordinary pressures and challenges to family life. On average, adults must wait two years for diagnosis and children more than three and a half years after being referred by their GPs. Although guidelines from the National Institute for Health and Care Excellence say that the wait for a diagnosis should be about three months, some children and their families are having to wait for more than 10 times the recommended period. We are failing those children and families.
A rarely mentioned consequence of families’ struggles with challenging and unusual behaviour is the impact that that can have on siblings and family life. The mother of a young autistic-spectrum child in my constituency explained to me recently that if her son was struggling to deal with a birthday party, a noisy branch of McDonald’s or a busy shopping mall, the whole family had to leave.
We must aim to improve the structure, process and outcomes of care for these children and their families. Autism teams conducting assessments of children, young people or adults should be specialist, integrated teams with access to speech and language therapists, occupational therapists, and clinical and educational psychologists. Systematic assessments for conditions that co-exist alongside autism should be part of the diagnostic pathway as required by the Autism Act 2009. This is particularly important because people with autism might have co-existing physical health conditions and/or mental health problems which, if they go unrecognised or untreated, could further impair their psychosocial functioning and place additional pressure on families or carers.
Because of their social communication difficulties, some people with autism may find it particularly difficult to communicate their needs and to access mainstream health and social care services. People with autism should have a personalised plan that is developed and implemented in a partnership between them—and their family and carers, if appropriate—and the autism team. People on the autistic spectrum are unique, sensitive and often highly intelligent individuals who desperately want to be part of their local and wider community. With more support and understanding, that is achievable. We can and must do better to secure better outcomes for adults and children with autism.
John Howell (Henley) (Con)
It has become de rigueur in this debate to congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), and I am absolutely delighted to congratulate her on initiating this debate and on her excellent work on the Autism Act 2009, which was also mentioned by my right hon. Friend the Member for Clwyd West (Mr Jones). I also congratulate her on all the work she has done with the all-party parliamentary group on autism.
I became aware of autism through a lot of activity in my constituency. Towards the north of the constituency, there is a big autism unit in the village of Chinnor. We also have facilities at Thomley Hall in the very north of the constituency, and it is a marvellous place to go to. The organised chaos there is wonderful to see, and it is a great privilege to be part of that and to see the enormous efforts being made by the staff to look after people with autism. In the south of my constituency, around Henley itself, we can see the work of Dame Stephanie Shirley and others.
I would like to pay tribute to a charity in my constituency called Music for Autism, which has spotted a link between music and autism. It is organised by the Orchestra of St John’s, many of whose members spend hours of their time, freely given, going into schools and other places and working with children with autism in order to show the calming effect of music on them and the enormous ability of music to take them forward to the next stage of their development. I pay tribute to them for doing that.
I want to make two points in the debate. They have already been made by other speakers, but I think it is worth reflecting on them and making them again. The first relates to diagnosis. The difficulty with late diagnosis is that people do not know what their situation is. The advantage of early diagnosis is that they are better able to understand the behaviour involved and how the role of partners can influence the way in which we look at people who have had the diagnosis. That is the view of people I have met in my constituency, including a couple I met in a café in Henley who told me about the difficulties they had had with a late diagnosis.
As we have heard, some people are able to lead pretty ordinary lives and manage their condition extremely well. I have met several such people over the years, including a young man I met at the last Conservative party conference who was able to demonstrate that. I agree with the hon. Member for Greenwich and Woolwich (Matthew Pennycook) that public recognition of the condition is not the be all and end all in relation to people’s needs, but it is certainly a good starting point. In order to help people to live a fulfilled life, we need public recognition of the illness. The need for early diagnosis is absolutely crucial, and I urge clinical commissioning groups and NHS England to bring down waiting times in line with the National Institute for Health and Care Excellence guidelines and to work with many different stakeholders to create a more responsive environment of diagnosis and support. Those words were used to describe the situation to me, and I think they do it extremely well.
A significant element is the involvement of health and social care in the care and management of adults with autism. I know that this is a broader point, but it provides a good example of an area in which we need the rapid integration of health and social care within the NHS. It will be much better when all these facilities are together under one roof.
Tom Elliott (Fermanagh and South Tyrone) (UUP)
Is the hon. Gentleman aware that, in Northern Ireland, health and social services form a single body, making it much easier to have an integrated approach? However, we still need integration and co-operation with other groups and organisations, and with statutory agencies such as the Department of Education.
John Howell
The hon. Gentleman makes a valid point. It is absolutely essential that we achieve that level of integration. We need to start by integrating the medical activities of the NHS with social care in the community, because until they are under one roof we will not have the ability to deal with these problems in the way that will be most effective for people who suffer from this condition.
My second point relates to education. I have a wife who, for many years, taught a young man with autism and struggled to provide him with the assistance he needed. She was remarkably successful in doing that. That was done on a private basis, but the vast majority of children with autism—over 70%—are in mainstream education, and it is there that we have to focus our attention. The teacher training programme needs to include enough information on autism to enable teachers to feel empowered to recognise it and deal with it effectively. If we can do that, we will have a much better chance of purposefully dealing with people with autism.
Norman Lamb (North Norfolk) (LD)
I have done it already, but I will do it again because everyone is doing it: I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on her leadership on this matter. What she has been involved with, and what we are all involved with as a society, is learning how to understand autism much better and recognising that we fail people badly through our ignorance of the potential and capacity of people with autism to lead fulfilling lives and to contribute massively to society. The hon. Member for Livingston (Hannah Bardell) and the right hon. Member for Clwyd West (Mr Jones) made the point strongly that there is much that people with autism can do in the employment sphere. They can be fantastic employees, contributing a great deal and leading fulfilling lives, but we often fail them. Also, it costs the Government and the economy a great deal when people with autism end up depending on the state because we have failed to provide them with the necessary support early on. That is the big challenge.
Mrs Gillan
I notice that we have just been joined on the Front Bench by my hon. and learned Friend the Member for South Swindon (Robert Buckland), who was my predecessor as chair of the all-party parliamentary group on autism. I want to pay tribute to the work that he did. I also want to stress that in bringing in the Autism Act 2009 and in securing this debate today, I was supported by many other Members across the House. It was not just me on my own; it was a real team effort.
Norman Lamb
That brings me nicely on to my next point, because I was going to say that this is not one Government’s responsibility; we all have to learn and understand more. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.
Hannah Bardell
The Library briefing paper states that
“the Government does not collect data specifically on employment rates for people with Autistic Spectrum Conditions”.
We should campaign, cross-party, to change that and work with business to get interviews that are friendly to those on the autistic spectrum.
Norman Lamb
I totally agree with that. As a former Minister, I recognised during my time in the Department of Health that, whether it be mental health, autism or learning disabilities, we operate in a fog. There is an absence of data that have been analysed and understood. If we are to make the improvements of which we are capable, we have to understand the evidence, which involves the collection of data.
I want to highlight the failures of society and the extent to which we treat people with autism as second-class citizens by referring to two cases. The case of Connor Sparrowhawk, who tragically lost his life through drowning in July 2013, has been much documented recently, and his mother, Sara Ryan, has been an amazing campaigner, fighting for justice. The Oxford Mail reported this morning about a recently leaked report, produced for the NHS trust some 11 months before Connor lost his life, that demonstrated failures of care in his unit. The article states:
“The report found Slade House was particularly poor, flagging up issues with a ‘lack of clarity of care plans’, ‘no clear understanding of a ‘locked door policy’
and so on. What is the point of commissioning reports at enormous expense if their conclusions and recommendations are ignored?
There has been great focus this week on the importance of the accountability of public bodies following the shocking conclusion of the inquest into the Hillsborough tragedy, but that importance stretches across all public bodies and into healthcare. It is important that organisations recognise their responsibility to involve the families of those who lose their lives in investigations and to have an open and learning culture, rather than a closed culture that excludes families. The trust’s treatment of Sara Ryan in the investigation of Connor’s death has been truly shocking. There must be accountability and a willingness to learn from mistakes and to take account of any recommendations.
As we try to get people out of assessment and treatment units, where they are often left for too long, the Health & Social Care Information Centre has found that 15% of the transforming care cohort, of which the Minister will be aware, have autism and no learning disability and that 23% have autism and a learning disability. When looking at the transforming care partnership plans and the outcomes for individuals, it is important that the Department ensures that the specific needs of autistic people are included and addressed.
Finally, I want to refer to the case of an extraordinary constituent of mine. A nine-year-old boy wrote a letter for his parents to take to a meeting that I had on his behalf with the authorities at Norfolk County Council, and he ended up being interviewed—at the age of nine—on the “Today” programme, and it was a remarkable interview. He movingly wrote in his letter:
“I normally say to myself you have to keep on going. I normally also say ‘is it worth it’. I could just kill myself. I wouldn’t have to face today.”
That comes from a nine-year-old boy. His family has been left waiting some two years for a diagnosis without any real support. They have been told that he does not meet the threshold for care from the Child and Adolescent Mental Health Services. Other hon. Members have highlighted similar cases, with the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) talking movingly about her experience, for example. The family, by borrowing from relatives, have managed to pay for some support for their little boy, but what about all those families who cannot afford it? It is intolerable. We cannot justify a society in which children get help if they have articulate parents or parents with money, but where those without go without.
As we seek to implement maximum waiting time standards in mental health, something which I have made my mission, my plea to the Minister is that we include autism and follow the NICE guidelines that the first diagnostic assessment should start no later than three months after GP referral—not 36 months, as I am told is sometimes the case in Norfolk, or 24 months, as in many other parts of the country. The result will be that society and the Government will save money in the long run if we make the investment in diagnosis and treatment at an early stage.
Mr Robin Walker (Worcester) (Con)
It is a pleasure to follow the right hon. Member for North Norfolk (Norman Lamb), who made the point about the need for earlier diagnosis more powerfully than I possibly could; it is certainly one that I support in today’s motion. I also want to join in the many congratulations to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) and all those from both sides of the House who were involved in securing the Autism Act 2009. It was the beginning of a journey that continues with today’s debate.
I echo the concerns that were powerfully raised by the hon. Member for Argyll and Bute (Brendan O’Hara) and my hon. Friend the Member for Bury St Edmunds (Jo Churchill) about the risks of social isolation for people with autism, and I want to pay tribute to a couple of organisations in my constituency that have made great strides in reducing that isolation. The inspirational Monday Night Club was founded by Laura Gill, a constituent of mine with learning difficulties, and provides a forum for people with all sorts of learning difficulties, including a large number of people with autism, to come together, to socialise and to feel normal in a social setting.
Another organisation is ASPIE, the charity that I mentioned earlier, which was set up by Sarah Micklewright, an inspirational constituent who was on the autism spectrum. Tragically, and illustrating the point that my right hon. Friend the Member for Chesham and Amersham made about the lower life expectancy of people on the spectrum, she died two years ago next week aged only 38, but she has left a remarkable legacy in Worcester. A house was bought by her parents for people on the spectrum to come together, socialise and share ideas. I have been privileged to visit on several occasions and have been teased for my neurotypical behaviour and for my inaccurate birthday cake-cutting, among other things. It is a fantastic organisation that has played a part in not only helping to reduce the risk of social isolation, but inspiring people to come together and believe in themselves and in their capacity to work and to create businesses for people on the spectrum.
Many hon. Members have made powerful points about the talents of people on the spectrum and the need to unleash them, and we heard about the evidence in the article in The Economist. I pay tribute to the founders of an organisation called Wits End Wizardry, a web design company that was launched out of ASPIE in Worcester and entirely staffed by people on the autism spectrum. It discovered that the software programming skills of people on the spectrum are incredibly powerful and that with the right guidance and support and with the right people working with them to provide front-end customer service, they can deliver fantastic websites for all types of businesses and charities. I believe that it has done some important work for various organisations, including Ambitious about Autism, which shows the contribution that people on the spectrum can make.
Mrs Trevelyan
Does my hon. Friend agree that we need to use these great talents—this concentration and extraordinary ability to see the world in different ways? In the north-east, a business called Autism Works is taking on mathematical PhD autistic young men—they are all men—to challenge the big boys in the provision of that scientific and tech support. I think this is the future for our country.
Mr Walker
My hon. Friend is absolutely right about that, and I pay tribute to her for her fantastic speech earlier. She is on to something here; we are seeing this happening in the north-east and in the midlands, as our increasing cyber-security cluster is looking to take on more people with autism. We heard earlier about the incredible contribution of Bletchley Park, and many of the people who contributed to that work were probably on the spectrum. In cyber-security, businesses such as Titania in Worcester are actively going out to recruit people with autism. I want to see more businesses making that effort and creating opportunities for people. As Ambitious about Autism has shown, we need to do things differently. People cannot just be invited in for interview, because the whole process of interview is set up to work with neurotypical people. We need to create an autism-friendly job application process in order to make sure we are making the most of the talents of these people. I pay tribute to the businesses that are making the effort to do that.
I recently held a Disability Confident jobs fair in Worcester and I was very impressed to see Malvern Instruments, another major employer in our area, recruiting. One of the people representing it in its recruitment was somebody whom I had previously met at ASPIE and who is on the autism spectrum. I wish to pay tribute to Justin McKeon who will be running the Worcester 10k to raise funds for ASPIE, and if anyone in the Chamber wants to join me in supporting him after this debate, I would be delighted.
The Government have many programmes to help people to work. We are talking about halving the disability employment gap, and autism is a big area we should be hitting on to try to make sure that that happens. We also have the apprenticeships programme, many aspects of which can be tailored to support people with autism. I have spoken to my hon. Friend the Minister for Skills about this, and I know he answered a question about this during Education questions this week. I am delighted to hear that he is engaging in round-table meetings with the autism charities and organisations to make sure that we can tailor programmes within the apprenticeships programme to suit more people on the spectrum. There is much more work to be done on this and I would like this “A” badge I am wearing, with the “A” standing for apprenticeships, also to stand for ambition, aspiration and achievement for people with autism.
Several hon. Members rose—
Madam Deputy Speaker (Mrs Eleanor Laing)
Order. A great many people still wish to speak, so I am afraid I have to reduce the time limit to five minutes.
John Woodcock (Barrow and Furness) (Lab/Co-op)
I will try to reduce my speech to below five minutes to give others a chance to speak in this excellent debate, Madam Deputy Speaker.
John Woodcock
You are welcome.
We have heard erudite contributions in the debate so far, and I just wish to make two main points. The first is on understanding the scale of the problem. People have talked at length about this, giving some excellent examples, but I want to go further on the fact that we are still far from seeing the true scale of the autism problem in our country. This is partly because although recognition is growing, it remains insufficient among members of the community. It is also because of the number of worrying ways in which the true extent of the lack of capacity in local services is being hidden, and I hope the Minister will take up that point; the extent to which people are being denied is also being masked. The hon. Member for Glasgow East (Natalie McGarry) talked about the long referral times, way beyond the recommended limits. In Cumbria, the time taken is even longer than the average, which shows the problems.
I wish to relate some of the concerns that parents of autistic children consistently raise in their local support group, and when talking with charities and directly to me. They suggest that even the acknowledged level of deficiency of the service does not reflect the true picture. They tell of their repeated frustration at contact just being ignored and how difficult it can be to get service practitioners even to pick up the phone. That is not properly documented. If people cannot even get on the waiting list to be seen, or they cannot get their request to be acknowledged because their contact is not being acknowledged, the problem is even bigger than is stated. Particularly worryingly, parents have a strong sense that people will tell them orally that the service is not sufficient for them but will refuse to put it in writing in a way that could allow them then to escalate it through the system. I would like the Minister to reflect on that and say whether he believes that that is a genuine problem and whether it is a wider problem.
My second point is about my pride in what my constituency has been able to contribute to the wider awareness debate. First, I should mention “The A Word”, which many hon. Members doubtless watch, as it is filmed in Broughton-in-Furness, in the north of my constituency. As Members will see from the programme, it is a fabulous place to go. I commend all involved in that programme for doing important work in a mainstream, prime-time BBC programme that is getting the message out in a really effective way.
I have delayed my congratulations to the right hon. Member for Chesham and Amersham (Mrs Gillan), but I thank her for the way in which she has engaged with my constituent Deborah Brownson, who has produced an excellent book. It is a children’s guide to autism called “He’s Not Naughty”, which she is trying to get into every school she can. I want to thank the Mayor of Barrow, who has financially facilitated, just yesterday, getting it to all the schools in the borough. Ministers on the Front Bench are asking for personal copies, and I would be delighted to help in doing that. I ask anybody listening to this debate who can contribute to her financial drive to get this illustrated book to other schools to do so—all we need is the postage and some of the printing costs covered. It is an excellent illustrated guide that will explain to children just what is going on in the minds of autistic—[Interruption.] I am afraid that I have completely failed in my task and I am on my last five seconds.
Maggie Throup (Erewash) (Con)
I, too, congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) and all the team that she talked about earlier.
In the short time I have been in this place, numerous families have come to my surgery despairing about the time it is taking to get an autism diagnosis for their child. The diagnosis is obvious to those individual parents, and to many of their friends and family, but without the clinical diagnosis these children are trapped. One very moving case recently involved a seven-year-old boy. Almost two years ago now, he was referred to the community paediatrician. His first appointment took nine months to materialise, when he was diagnosed with ADHD. In January this year, he was referred for a communication assessment, and in March his parents received a letter saying there will be a further seven-month delay in accessing this assessment. This little boy’s behaviour means he is excluded from school for more time than he is at school, and I am sure that my hon. Friend the Member for Berwick-upon-Tweed (Mrs Trevelyan) can relate to the story I am telling. The school has tried to support him—it has done its best—but of course it has a duty of care to other children. He is about to move from infant school to junior school, and that in itself is causing a problem. The school he should naturally be going to has refused to take him, as it just cannot cope with his behaviour, yet until he has received that autism diagnosis he is unable to access a special needs school—so this is a Catch-22 situation. This is just one of a number of cases I could highlight, and I am sure it mirrors cases that people from across the Chamber have encountered.
To help another child stuck in the system, I wrote to the Health Minister last July to highlight the unacceptable delays. I got a comprehensive response, but, sadly, nine months on, nothing seems to have changed in Derbyshire. I get the same message from officials time and again that they are still recruiting a community paediatrician and are looking to implement new pathways. I know that the pathways and the services are determined locally, but I ask the Minister to do whatever he can to ensure that the children of Erewash, and indeed of the whole of Derbyshire—my hon. Friend the Member for Mid Derbyshire (Pauline Latham) has also highlighted the issue—get a timely diagnosis for their autism spectrum disorder.
In advance of this debate, I was contacted by a number of constituents. One parent carer of a young man with autism asked me to relay her story. She movingly described how repeatedly being requested to prove that he is autistic and to fill out form after form makes her son’s behaviour “go through the roof”. She says:
“My son’s autism is very complex and I have to speak to him in a certain way, explaining the meaning of words. This is very important because it can lead to violence if you use the wrong words.”
That is violence against her. She says that the tone of her voice and her body language are of the “utmost importance”. She says:
“Please, stop and think, not everyone can be the same. We need understanding as well as policies that help.”
At the moment, they feel that the policies are devastating their lives.
I think that I have managed to reduce the length of my speech quite well. The National Autistic Society’s report “Too Much Information” is aimed at improving the understanding of autism. From the experiences that I have highlighted, we can see that it is not just members of the public who need to have a better understanding of autism, but those who are supporting these vulnerable children and vulnerable young adults. There needs to be a greater awareness of the consequences of not providing the right support at the right time.
Cat Smith (Lancaster and Fleetwood) (Lab)
I wish to touch on three areas today: diagnosis waiting times, employment and public awareness.
We have already heard this afternoon that the time that people have to wait for a diagnosis is unacceptable. That view is certainly reflected in the correspondence that I have received from my constituents on this matter. Janeen Shears from Preesall had to wait almost five years for her son’s diagnosis. She said:
“I was told my son was very complex and while professionals recognised many traits he didn’t ‘fit neatly into one diagnosis box’.”
That is because every autistic person is unique and different. Another constituent, Saffron Warde-Jones, who lives in Lancaster, said this to me:
“I have autism and was only diagnosed aged 44 after a lifetime of struggling.”
Diagnosis opens up a support network, so will the Minister ensure that NHS England’s new autism care pathway includes and reduces diagnosis waiting times?
I have been privileged to work very closely with the local National Autistic Society group, which is chaired by Gill Mann. It was clear early on that one of the big issues facing the group was access to employment, which was reflected in the fact that only 15% of adults on the spectrum are in full-time paid work. That is why, locally, I am working with the NAS to put on a jobs fair to implore employers to take on autistic people. I am also looking forward to the Government publishing their White Paper on disability and employment, which will
“set out reforms to improve support for people with health conditions and disabilities, including exploring the roles of employers to further reduce the disability employment gap and promote integration across health and employment.”
Can the Minister give us any indication of when to expect that White Paper, as I am aware that the date has been moving around?
We know anecdotally that autistic people feel that the current employment support services do not meet their needs, but the current system does not record their participation in or their outcomes from the Work programme. Going forward, I want to see more robust data on autistic people to understand how provision is working for them. Furthermore, what are we doing to support young people with autism in making the transition from education to the world of work? My constituent, Brian Simpson, said that his son gets a lot of support from school, but he is really worried about what will happen when his son finishes his education.
The Government have committed to replacing the current Work programme and Work Choice with a new Work and Health Programme for people with health conditions and disabilities. That presents us with an important opportunity to do more to support autistic people to find and to stay in work.
In relation to the new Work and Health Programme, can the Minister tell me on what date the tender document will be published, and from what date the programme will be operational? Will the specification for the programme require that the conditions of the claimants, including autism, be recorded by both providers and Jobcentre Plus, and what discussions has he had about the conditions that will be recorded?
On awareness funding, my constituent Janeen told me that people often think that people with autism have a “genius talent”. She said that they do not really understand the “meltdown” in someone’s behaviour. It is just used to describe any kind of naughty behaviour. The Government should take a lead in tackling this lack of understanding.
Half of all people on the autistic spectrum tell the NAS that they do not go out because they are worried about people’s reactions to their autism. A quarter of them have been asked to leave a public place because of the behaviour associated with their autism. How do parents cope with that? They respond by not taking their children to places where they do not feel they will be accepted, which makes their children’s world a little bit small. They cannot enjoy the public space that we all take for granted—the parks, the museums and the shopping centres.
The NAS video, which has had 50 million views online, has a fantastic way of describing just how difficult it is for parents of an autistic child. The Government can do a lot more. Around 800,000 people in this country are affected by dementia, and the Government have shown great bravery in trying to change public attitudes by spending more than £2 million on awareness campaigns. The same work needs to be done for people on the autistic spectrum. I am aware of the Government’s £340,000 programme in this area, and I am looking forward to hearing the Minister’s remarks, telling us more about the scope of this project. With programmes such as “The A Word” on the BBC and the books and articles that are out there, now is the time for the Government to turn this awareness of autism into a true understanding.
Huw Merriman (Bexhill and Battle) (Con)
Although I am aware that my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) is not in her place, I start by thanking her for her work in this area. I am aware from my constituents that she has bestowed so many rights on them through legislation and that she has started this whole chain. I pay tribute to her and give her my thanks on behalf of my constituents.
I was elected only 12 months ago. Before the election, I had no direct experience of autism. On being selected, a group of mothers who had autistic children or children with Asperger’s reached out to me and explained how difficult their lives were, what they needed and how hard it was to navigate through the system. I made a pledge to do all I could to help people with very special children.
On election, I was faced with one of my first cases. A mother told me how she had applied to the Driver and Vehicle Licensing Agency for a blue badge because her child, who was six, had such a difficult condition. Whenever he saw anybody in the street, he just collapsed on to the floor. As a result, she had to carry her child everywhere. She applied for a blue badge, but because the DVLA’s tick-box system did not register any physical disability her application was turned down. We had to fight on her behalf. We were fortunate to be able to go in at a higher level and get somebody to understand the complex needs of her child. That taught me that those with autism, who have such unique and differing needs, do not fit into the tick-box system. I ask the Minister whether he can find some way of ensuring that anybody who works in a tick-box employment system—or a Q and A system—has autism training. It is often impossible for the families of autistic children to navigate the system.
Since then, I have dealt with more cases, and I have been involved in some very special groups dealing with autism in my constituency of Bexhill and Battle. I have two points on which I wish to focus: education and the workplace.
I am fortunate that in Bexhill we have two very special schools that cater for those with autism, as well as those with other conditions. The first is Glyne Gap School, a day school which is rated “outstanding” in all areas. The Ofsted report in 2015 referred to
“the inspirational leadership of the headteacher and assistant headteachers”,
with the result that
“all staff have an uncompromising focus on the quality of learning for all pupils.”
Surely that must be the goal of every school that looks after children with autism.
The second school is St Mary’s, also in Bexhill, where young people do not just learn, but live. The school has had a difficult time owing to a crisis of confidence in the chief executive. I visited the school the day the chief executive left and I was amazed at how caring, supportive and dedicated those teachers were to children with incredibly difficult and challenging conditions. I take my hat off to all who work in that environment. The school still requires improvement, but I believe that better times are ahead.
Constituents have raised with me a number of points in respect of schools. I have two very good schools but, as I mentioned, autistic children have individual and different needs and often need a different school to cater for them, but my council, East Sussex County Council, tends to favour just one school. As a result, it is very difficult for parents to get their choice of school. I would like to see more freedom. I welcome the fact that we have trained 90,000 teachers in autism, but another comment that I have had is that a child was felt by their parents to have been isolated and restrained, rather than experiencing positive handling strategies, which Team Teach and other strategies provide. As has been mentioned, my constituents struggle because of the long time it takes to get a diagnosis.
I have only 30 seconds left, but I want to mention employment. Tomorrow I have a jobs and apprenticeships fair, and I am delighted that St Mary’s in Bexhill will be bringing its young people down so that we can try and get them apprenticeships. I am fortunate to have in my constituency an organisation called Little Gate Farm, which helps people find employment opportunities. It tries to bridge the gap between school and employment in rural communities. I salute what that organisation does, and I salute what everybody does in my constituency for those very special and gifted people.
Marion Fellows (Motherwell and Wishaw) (SNP)
Two weeks ago I would not have been able to speak in this debate, but because of a pressing constituency issue I have found myself suddenly having to read up and listen, and I have learned so much today about autism. My only previous experience was teaching some autistic young men who passed through my hands when I was a further education lecturer.
I have become more and more aware of the crying need to raise awareness of autism at all levels—in the general public as well as in public authorities. My hon. Friend the Member for Argyll and Bute (Brendan O'Hara) mentioned the Scottish Government’s plans for autism and their strategy. As part of that strategy, they opened six centres across Scotland to provide a one-stop shop experience for parents and people with autism. The one-stop shop in Motherwell will probably close in June this year. Since that has been announced, I have had innumerable emails from people in my constituency and outwith it, because the shop covers the whole of Lanarkshire. There are two local authorities involved—North Lanarkshire Council and South Lanarkshire Council—which will no longer fund those services. As hon. Members can imagine, that is a devastating blow to my constituents and people across Lanarkshire.
The one-stop shop provides workshops, training for parents and professionals, and support services for those who have autism. Those services are available even before diagnosis: anyone who thinks there may be an issue can go there and get advice. The shop was planning to run further courses for girls with autism, which is a very important area, and it was hoping also to run other specific and technical courses for parents and professionals.
My local authority, North Lanarkshire Council, has indicated that it will continue to fund an organisation called HOPE for Autism, which does good work with families in North Lanarkshire. However, the organisation’s services can be accessed only after diagnosis and its work focuses mainly on socialising and is for children only. There is also an annual fee per child for parents who join.
The reduction in services is devastating news. I do not want to stand in this place and denigrate anything that HOPE for Autism in North Lanarkshire has done and will continue to do, but it does not provide a range of services that parents can access at present. That is causing great distress.
I was unable to attend a meeting at the one-stop shop on Monday, but my office manager went and came back almost in tears at some of the stories that she heard. She said she found it most moving when parents said that they almost wished that their children had a visible disability, or they wished their children had something else, because then they would get more help and more hope and people would understand what was happening with their children. That heartfelt wish brought home to my office manager how little she knew about autism.
I do not think for one moment that North Lanarkshire Council’s motives are bad. I know that there are funding difficulties all over the UK, but I do not think the council understands what the one-stop shop provided. I have a list of some of the wonderful work that it has done. It ran workshops on visual issues and autism, workshops on sleep strategies by Sleep Scotland, workshops on support for young carers, on autism and diet by NHS Lanarkshire, and on autism and play by a Scottish Autism support team, a workshop on demand avoidant behaviour by the paediatric autism consultancy team, and a safe talk autism awareness training workshop by the Richmond Fellowship. All that will be lost in my area.
Mrs Gillan
I hope I am buying the hon. Lady an extra minute. What she is saying is very important. Does she think there is any possibility of that decision being reversed, as she is making such a powerful case for keeping the one-stop shop open for her constituents and people beyond her constituency?
Marion Fellows
I thank the right hon. Lady for her intervention and the time it may buy me. As she can imagine, the parents are fighting hard to retain the shop and to convince both North and South Lanarkshire Councils that the service must be funded, because of the great work that it does and the benefit that it brings to anyone in North or South Lanarkshire who is affected by autism. Some of the emails that I have had are heart-wrenching, telling of social isolation and nine-year-old children trying to kill themselves. Those emails are full of praise for the help that has been received, the work that has been done and the staff in the one-stop shop, two of whom are seconded from Scottish Autism and two of whom will lose their jobs. I will go on and fight for that very valuable shop in Motherwell.
Mike Wood (Dudley South) (Con)
I am proud to be a governor at Halesbury School, which has become a specialist autism school where more than a third of pupils have autism, many undiagnosed when they join the school. I am grateful to the deputy head, Amanda Appleby-Payne, for the insight she offered ahead of this debate.
Two special schools in my constituency are doing excellent work for children with autism. The Brier School has been rated “outstanding” in every category in its two most recent Ofsted inspections, and Pens Meadow provides an incredible level of education, care and support for children with very severe and complex special needs. I was pleased to open its new post-16 facility last autumn, which means that more young people with autism will be able to access further and vocational education.
Autism is a lifelong condition that affects people very differently. It affects how they communicate and how they make sense of the world around them. While many people live largely independent lives, others need more specialist support. Unfortunately, many people live a life full of anxiety, depression, mental health issues and sensory sensitivities that make it extremely difficult for them to function or to access the normal situations and public services we take for granted.
A 2012 study found that about 1.1% of adults were on the autistic spectrum, and a later study found a similar prevalence among children. If this House is representative of the population at large, therefore, we would expect at least seven Members to be on the autistic spectrum.
Unfortunately, the excellent support and education provided to children with autism at Halesbury, The Brier and Pens Meadow are not always reflected in the education system as a whole. There are 120,000 school-age children in England on the autistic spectrum, more than 70% of whom are in mainstream education. The implication is that many teachers in mainstream schools are likely to have children with autism in their classes—if they do not at the moment, they almost certainly will at some stage during their careers.
I pay tribute to the NASUWT for the valuable work it has done on this issue and particularly for the report my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) referred to, which showed that 60% of teachers do not believe they have enough training to meet the needs of pupils with ASD.
Mrs Gillan
My hon. Friend is making some powerful points about the education of young people with autism. Is he aware of the work being done by Ambitious about Autism, which shows that the number of special educational needs appeals at tribunals went up from over 1,000 in 1995 to over 4,000 in 2014? Among the most common types of appeal are those involving autism.
Mike Wood
Having met Ambitious about Autism and discussed that very point, I certainly recognise the challenge to which my right hon. Friend refers.
Difficulties in the classroom and for families of children with autism often arise because of a lack of knowledge and understanding about the condition. Children on the autistic spectrum often get chastised for not behaving in exactly the same way as other children. Their exclusion rates are extremely high, and figures from the Department for Education show that autistic pupils are four times more likely to be excluded than pupils with no special educational needs.
Teacher training must equip teachers with the knowledge and tools they need to provide all pupils with the best possible support throughout their time in education. That is why I support the call by Ambitious about Autism and the National Autistic Society for autism to be included in the new teacher training framework.
If I may, I will conclude with the words of Mr and Mrs Whitmore, the parents of a pupil at Halesbury:
“We want our son to be accepted—and for him to be accepted equally as a citizen of this country, as his peers are...Autism is only a small fraction of our son; it is not everything he is. Will is so much more than the label society has given him.”
It is for people such as Will and the families who are working to make sure their children and everybody affected by autism can have the best possible chance to fulfil their full potential, whether that is in the workplace or in society as a whole, that we are having this debate. This debate is a huge and positive step forward, and we have seen the quality of the contributions that have been made. I therefore look forward to hearing the Minister’s response.
Helen Hayes (Dulwich and West Norwood) (Lab)
I am grateful for the opportunity to speak in the debate, and I too pay tribute to the right hon. Member for Chesham and Amersham (Mrs Gillan) for securing it and for her long-standing commitment and hard work on this issue.
Over the past year, I have been contacted by several parents of children with autism—parents who are proud of their children’s abilities and who, like any parent, simply want their children to receive the support they need to live the best life possible.
I have been contacted by enough parents to be able to see what some of the problems and challenges are—they are many, and they cut across different areas of public sector responsibility. I have represented parents of autistic children who are struggling to get a diagnosis for their son or daughter, which is a significant problem. Just as worrying, however, are the families whose child has a diagnosis but who are still struggling to secure the additional resources and support they need, whether that is support in the classroom, transport to get to and from school, help to access housing that is appropriate to their needs, or help with the welfare system or healthcare.
Across the public sector, there is a lack of understanding of autism and its impact on families. Families face stigma and stereotyping. The complexity of autism is not understood, and that results in parents facing weekly and sometimes daily battles on behalf of their children, just to secure the basics.
Earlier this year, I was privileged to meet Isabelle and Robin Garnett, whose 15-year-old son Matthew has autism. Isabelle came to see me at my surgery to tell me about the terrible experiences Matthew was having because of his mental health needs. I would like to focus today on the particular problems of people with autism who also have mental health needs.
Last summer, Matthew Garnett’s behaviour and level of distress deteriorated, and his family were finding it more and more difficult to cope. Eventually, Matthew assaulted his father, resulting in his parents calling the police—an absolutely heart-breaking situation for any family. Matthew was sectioned under the Mental Health Act and taken to a psychiatric intensive care unit in Woking, many miles from his south London home.
Psychiatric intensive care units are for short-term assessment; they are designed to diagnose a patient and to determine the treatment and support they need, and then to make an onward referral within six to eight weeks. Matthew’s doctors quickly identified that the most appropriate place for him was a unit at St Andrew’s, Northampton. St Andrew’s accepted the referral, but to Isabelle and Robin’s great distress, Matthew remained in Woking for a further six months, moving to Northampton only after a persistent campaign by his family, and after I had repeatedly raised the case in Parliament and with the Minister.
I am grateful to the Minister for meeting me and Matthew’s family, for recognising the extent of their suffering and the many serious issues with Matthew’s care, and for initiating a review of his case. I look forward to seeing the results of the review and to discussing it with the Minister.
One of the most troubling aspects of Matthew Garnett’s situation was the absolute absence of autism awareness or specialism from the care he received while he was in Woking for six months. There was no recognition of his need for routine and structure, of the impact of his diet on his condition or of the detrimental impact of too much screen time on his mood and level of anxiety. As a consequence, his physical and mental condition deteriorated while he was in Woking. He gained weight, became more withdrawn and broke his wrist; his social skills and reading ability regressed; and he became more anxious and frightened.
Matthew’s parents launched a brave campaign to get him the treatment he needed. In doing so, they engaged with many other parents of children with autism and mental health needs. Working with the National Autistic Society, they launched a questionnaire for parents of children with autism and mental health needs. Within a few days, more than 800 parents had filled out the questionnaire, and the results are very troubling. Almost half the respondents said that, prior to their child being admitted to hospital, they had received no support in the community for autism or mental health needs. Some 85% of those whose child had been admitted to hospital said they had received no autism-specific support. Almost half said they did not feel consulted about, or involved in, decisions about their child’s care when they were in hospital. Finally, 61% said that, after their child was discharged, no arrangements at all were made for suitable support back in the community.
Children with autism, and their parents and carers, deserve better than this. While I am grateful to the Minister for his engagement with Matthew Garnett’s family to date, I urge him to pick up the wider set of issues and challenges in the mental health care system and across other areas of the public sector and to ensure we have a fairer deal for families who face these daily, heart-breaking struggles and appropriate resourcing of the support they need.
Fiona Bruce (Congleton) (Con)
It is said that a society is judged by the way it treats its most vulnerable. Among our most vulnerable are children with special educational needs, including those on the autism spectrum. I therefore want to give a voice to just a few of the many parents who have come to me over the past six years, including the Middlewich parents and carers support group, to describe their challenges in trying to get appropriate support for their autistic children. The situation is described by far too many with these words:
“every day feels like a fight.”
Time prevents me from quoting all the material I have available to describe their struggles of seeking often inadequate, slow or no diagnoses; of insufficient teacher training; of a feeling as parents that they have little voice or are inadequate, or worse, not believed; of struggles with bureaucracy, with too many different organisations; of, as one said, being pushed from pillar to post; of funding and resource frustrations; and of being, as another said,
“at a loss as to what to do.”
We need to do better for them.
One says:
“We have two children who have autism and face huge challenges getting the understanding and support they need.”
Another says,
“teachers in my child’s school in charge of special educational needs do not have sufficiently specialised training.”
Another says:
“Teachers are given…very little training. Many teachers have had only half a day’s training to cover all SEN.”
One said that more training is needed so teachers can help older children in secondary school to understand themselves when there may be an onset of distress and how to get help early. Another said:
“my son has had difficulties in school, and what hasn’t helped is that…the educational psychologist and the school, I am being told I should not say he is autistic spectrum…rather…he is a ‘complex child with complex needs’. The letter from the community paediatrician does say he has a diagnosis of ASD”.
One mother, like a number of parents, says:
“all the experts in the field of ASD would tell you that children can hold in their anxieties and control their behaviour at school, in order to ‘fit in’; but when they come home to an environment where they can be themselves, they act completely differently.”
Another said:
“I had three uniforms for him. These were all ripped when he returned home due to what had gone on during the day.”
Yet doctors often listen more to the opinion of teachers than parents. Another parent said that parents are made to feel that they are not believed—that they are
“bad parents and trouble makers. Yet what parents would want to go to so much effort to ‘pretend’ that their child has a disability?”
Another said that, as we have heard:
“The diagnosis process is not working…waiting times for diagnosis are too long…some children are being deliberated over for too long or even discharged, when there is clearly an issue which requires diagnosis.”
Another said that too much attention is paid to the opinion of teachers and not enough to parents. One mother told me she has spent three years trying to get her son statemented, but because they did not have a statement they could not get any support at primary school because money comes with the statement. He is now 12, at senior school, and has ASD as diagnosed by a paediatrician but is still not statemented.
Tom Elliott
One line from one of the parents the hon. Lady has mentioned has captured what this debate is about:
“every day feels like a fight.”
We have talked about this for so long. Surely there should be more progress to try to get more co-operation between the statutory agencies and Government Departments to ensure that every day is not a fight for parents and for those affected.
Fiona Bruce
The hon. Gentleman is correct. As long ago as 2009, following the Autism Act 2009, the Department for Health published an autism strategy that focused on five core areas of activity, one of which was the importance of
“developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a personalised needs assessment.”
That was for adults. How much more important is it that this happens for children, and at the earliest possible age and stage? Waiting times for assessment should follow the NICE guidelines of three months. That is a long time in a childhood; three years is an eternity.
One parent wrote that when diagnosis occurs there needs to be a greater understanding of the different ways in which autism presents itself between girls and boys. She said that
“there is not enough knowledge about girls on the spectrum...It is now recognised there are far more girls with ASD than previously thought. Girls develop the ability to mask their condition much more effectively. However, this knowledge is not being passed through the system. Far more training is needed for…professionals in the field, to ensure that our girls get equal access to assessment and diagnosis...my son was diagnosed locally by the paediatrician, yet the same doctor had quite evidently decided my daughter was not on the spectrum, without really investigating the possibility...So I had to take my daughter privately to a psychologist who was much more well informed...this needs to be addressed…we are doing our girls a disservice at present.”
Another said that autism is a spectrum of conditions and every one requires an individual solution, particularly as autism can be accompanied by another condition. As we have heard, a further problem arises when, as parents tell me, their child reaches late teens and falls between child and adult care. One mother told me that children with autism have an adolescence lasting 10 years longer than anyone else, but at 16 to 18 schools and colleges stop talking to you, but your child still needs support for a very long time. Another said:
“there are so many stumbling blocks on the way”
that it is no wonder that some of the children end up in the juvenile justice system, or self-harm.
Then there is the problem of employment. A mother told me of the struggles she is having trying to find employment for her son with mild Asperger’s syndrome. There is no support available and there are huge levels of ignorance among potential employers.
Given the right help, appropriate support can be really effective. Surely, we want for every child, including those with autism, the best start in life, and it can be achieved.
Jess Phillips (Birmingham, Yardley) (Lab)
I speak as a mother currently on the long waiting list for diagnosis. I thank everybody for their comments today.
I am delighted to speak in this debate. Like everybody else, I commend the right hon. Member for Chesham and Amersham (Mrs Gillan), who is a tireless campaigner on this issue—a subject incredibly close to my heart. So many misconceptions about autistic people get thrown around, such as “Everyone is somewhere on the spectrum”, which I am sure we hear a lot in this place, or my favourite, which is that people with people with autism have some sort of superpower or special gift. I can tell everyone now that they do not.
Last Friday, I watched the newly released DVD of “Star Wars: the Force Awakens” with my sons and their lovely autistic friend. Between us we decided that what appeared as the teenage tantrums of the new Dark Lord, Kylo Ren, was perhaps just him needing a bit of a “time out”. We concluded that perhaps he was autistic and just could not fit into the world he found himself in. Perhaps the new Death Star was just too noisy and made him feel stressed out. We thought he might wear the mask because he did not like eye contact. I am not sure that this was the film-maker’s intention, but it softened us to him. The group of people I was with “get” autism and ASD—they live with it every day—so they can see how a person’s behaviour might alter if things start to kick off. To all of us, it is not the person with autism who has the problem—it is the rest of the world. We have to think differently about people who think differently.
On every street I visit in Yardley, I meet families struggling with autism in adulthood or in their children. My postbag is full of heart-breaking cases of how much autistic people are struggling. In my constituency there is an amazing autism support group called Spectrum, where every meeting is packed with parents who want a break. This is not a minority issue—it is a growing issue, and we are not keeping pace with our provision, our awareness or our attitudes.
Today I want to focus on how the world needs to think differently about employment for people with autism. Only 15% of working-age people with autism are currently in work, according to the National Autistic Society. For any parent with a child with autism, this presents a heart-breaking and bleak future—but it does not need to be. Ambitious about Autism has identified that in fact 99% of young people with autism want to work.
So what can we do? The Department for Work and Pensions has made some impressive commitments over the past few years in saying that Jobcentre Plus will implement autism awareness and autism networks. I welcome all this, but in reality it is not what people in my constituency are experiencing. One constituent told me: “I do not blame the staff, but it comes down to a lack of understanding of autism. The support the jobcentre claim to be providing is not there. I was treated as though I had no disability and left to my own devices. That is the problem of having an invisible disability.”
Melanie Onn (Great Grimsby) (Lab)
At a meeting last week, somebody raised the issue of jobcentres specifically regarding the personal independence payment and self-assessment of people with autism or Asperger’s as being incredibly difficult. Why does that continue to be part of the process?
Jess Phillips
I could not agree more. Another of my constituents told me just this week how the jobcentre had failed to recognise the need for his mother to be able to attend meetings about his PIP arrangements and to change his benefits. That has resulted in frequent incidents of faltering benefits, which has made him incredibly vulnerable and left him with totally insecure finances.
On another occasion I heard of a mother who wanted to access a bus pass from the local authority for a home-to-school scheme, in order to get her son travel-ready for when he leaves school in a few years’ time so that he will be able to go on the bus on his own. She was given a “computer says no” answer and told to come back in the few years when it would actually matter. However, because she is a mum with an autistic child, she knows it is going to take time and training.
We have got to be bold and flexible. We have got to think differently about how we make our services and the world’s jobs available to people on the autistic spectrum. Although things are not perfect, we have come a long way from the days when a person in a wheelchair could not have a job because they could not access the building. Autistic people may not face a physical barrier like a staircase, but the barrier effect is exactly the same.
Not providing fair and equal access to these people is not only wrong; it is also illegal, and we have got to make sure that employers know that. We need employers to understand how an interview might feel to somebody with autism. It is terrifying enough for somebody who is neuro-typical, so I ask Members to imagine for a second that they do not want to look someone in the eye, find talking in front of strangers impossible, or find it impossible if two people speak over each other.
Ambitious about Autism has just launched its “Employ Autism” campaign to transform the employability of young people with autism. I ask everyone in this place to do as I have done and offer to provide work experience to young people with autism. I imagine that I will learn as much as my placement, possibly more. I also encourage Members to ask our local business improvement districts, chambers, local enterprise partnerships and businesses to offer tailored work placements and apprenticeships. That will help us all to think differently.
I want to stand here and say with confidence to every young person with autism and every parent with a child on the autistic spectrum: you can do anything. I want to say: your future is bright. I want to say it to myself, for my son. I want to say it to my son’s “Star Wars” fan friend. But I can’t. I don’t know what the future will be like for them. So let’s try to change it. Let’s think differently.
Ronnie Cowan (Inverclyde) (SNP)
I thank the right hon. Member for Chesham and Amersham (Mrs Gillan) for bringing forward this debate. I am grateful for the opportunity to speak in it and to put my full support behind the motion.
As I prepared my speaking notes, it became obvious that, while Members in this Chamber have an important role to play in raising awareness of autism, the most valuable insights will always come from those with direct experience of the condition. They are the ones who know whether services are working effectively and they know through experience what changes we should make to create a more autism-friendly society. It is, therefore, appropriate to make sure that their voices are heard in the House of Commons today. There are two people in particular that I will highlight. The first is a constituent of mine whose son has autism, and the second is Vicki McCarthy, the founder of Reach for Autism, a non-profit organisation operating in my constituency of Inverclyde.
I have a constituent who moved to Inverclyde with her six-year-old son in 2003, and her experiences raise a number of concerns. She raised a concern with me regarding an inconsistency among school staff: some worked very well with autistic children, while others lacked a basic understanding of situations that could make an autistic child uncomfortable. She also highlighted a lack of age-appropriate activities for teenagers with autism. Teenage years can be a difficult time for anyone, let alone those with autism. My constituent believes that greater co-ordination between social services and parents could lead to activities that better reflect the needs of their teenage children.
My constituent also raised concerns about the bureaucracy and poor communication of local social services. She felt that, while access to information was easily obtained through schools, contacting social services was a laborious process, with no guarantee of assistance at the end of it. My constituent summarised the situation best when she said:
“I would describe our life as one big battle for every tiny scrap of help and as someone who is naturally quite a shy person this has brought its own difficulties.”
Many parents with an autistic child will undoubtedly relate to those concerns, and we must recognise their commitment in continuing to campaign tirelessly for greater support to be made available.
One such organisation offering that support is Reach for Autism, which was established in Inverclyde by Vicki McCarthy. Reach for Autism offers a wide range of support, from teacher training to mentoring programmes. It currently supports more than 60 autistic people, including 44 children, eight young adults, four volunteers and a member of staff. It is difficult to overstate the importance of those services, not only for autistic people, but for their families. Lifeline services such as those established by Vicki can transform people’s lives.
If we invest in people with autism from a young age, we can decrease the chances of autistic people suffering from mental health problems as a result of social isolation or low self-esteem. That investment ensures that people with autism feel valued and respected, are prepared for employment and can live more independent lives.
Yet establishing and maintaining that support has been difficult. Reach for Autism has no core funding, and running costs are met entirely through donations and its own fundraising. The organisation and its vital services simply would not exist without the energetic support of volunteers and the determined efforts of Vicki. Whether it is individuals and their families or organisations themselves, those touched by autism are faced with the same obstacles: a lack of funding; a lack of certainty over future support; and a lack of public understanding of the condition.
I hope that other Members will join me in declaring that people with autism, their families and the organisations that support them deserve better than this never-ending uphill struggle. All people, including those with autism, deserve the chance to realise their full potential, and by increasing awareness we can take important steps towards becoming a more autism-friendly society. I know that I am better for my increased knowledge and would like to thank Vicki and all those who have raised my awareness and understanding.
Patricia Gibson (North Ayrshire and Arran) (SNP)
I, too, would like to add my voice to the clamour—the chorus—of appreciation to the right hon. Member for Chesham and Amersham (Mrs Gillan) not just for securing this debate, but for all the work she has done in this area over the years.
This subject is very close to my heart. I speak as a former teacher of English for more than 20 years who witnessed at first hand some of the challenges and obstacles that young people living with autism face. This debate is important not just because of the challenges that those living with autism have to cope with, but because of the isolation and the sometimes bullying and judgmental attitudes they face from a society that too often simply does not comprehend the condition. That is why we all—there is consensus on this—need to work hard to raise not just awareness of the condition, but understanding of it. In the long term, society’s lack of understanding can leave an individual with autism emotionally scarred, and in the longer term it can lead to difficulties accessing employment and the means to a fulfilling life.
The scale of those affected by the condition is significant. It is thought that more than one person in every 100 may be autistic, and behind each individual case, as we have heard, are families, loved ones and friends who also live with the condition. A study in 2008 revealed that as many as 71% of children with autism also live with a mental health condition, such as anxiety, depression or obsessive compulsive disorder. The Association of Graduate Careers Advisory Services found that 26% of graduates on the autism spectrum are unemployed. That is by far the highest rate of any disability group and more than double the average unemployment rate for disabled adults. 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 are more than twice as likely as their peers in the wider population to die prematurely.
It is important to recognise, as we have heard today, that no two people with autism are the same. There is a whole spectrum within the condition, which may explain the gaps in the understanding of it among the wider population, but we know that it can be quite debilitating for the individual involved, as well as his or her family, if they suffer from it with any severity. Progress has been made, but it is important that as much work as possible continues to be undertaken to promote, as I have said, not only awareness but understanding. Recent work undertaken by the National Autistic Society found that only 16% of autistic people and their families felt that the general public had a meaningful understanding of the condition.
I believe that folk, on the whole, at heart are decent. If we can help to raise awareness and understanding of the condition—this debate is a small part of that—the wider public will display more sensitivity, more kindness and more compassion towards those living with this condition.
Tom Tugendhat (Tonbridge and Malling) (Con)
I welcome the hon. Lady’s speech, and she speaks with great passion and eloquence. Does she also welcome the fact that schools do so much not only to improve the understanding in the local community, but to help their children who are on the autism spectrum to interact with the world as it is? Much is being done by schools such as Grange Park School in my constituency and, I am sure, by schools in the hon. Lady’s constituency.
Patricia Gibson
I take on board the hon. Gentleman’s important point. We have heard today that in some schools, there is a deficit of understanding and a deficit of support, but there are also excellent examples of teachers who have had thorough training in autism, who can support children in a specialised way and help them to access the curriculum in a meaningful way that would not otherwise be possible. We must recognise that and share such good practice, wherever it exists, around the UK.
When we raise understanding of autism, we will help to remove the shadow of loneliness and isolation that, far too often, those living with autism and their families experience. Loneliness and isolation have a negative impact on the general health and wellbeing of those affected by them, and loneliness is considered to be as damaging to health as smoking. That brings into sharp focus the importance of such work.
Before I finish, I want to pay tribute to the work that is being done in in my constituency. During the Easter recess, I attended an event in Ardrossan library—I attended a similar event last year—where people with autism and their families come together to share stories about the challenges that they face and the coping strategies that they use. I pay tribute to Suzanne Fernando, who organises those events and does so much to promote understanding of autism. I am quite proud of the work that is going on in Scotland. The Scottish Government have launched the Scottish strategy for autism, through which they have put the issue on the agenda, raised awareness of it and put resources into it. When children, young people and adults with autism lose out, they are a loss to our society, and we need to be more inclusive and mindful of that.
Melanie Onn (Great Grimsby) (Lab)
I join in the congratulations to the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on all her work on this issue. Last week, I was invited to Grimsby autism forum, which was held at Open Door. It is a fantastic group that helps to give people with autism and their families a voice in the many different systems that they find themselves thrust into.
I would like to raise some of the issues that were shared with me at the forum. There seem to be two main areas of concern: problems with diagnosing autism and Asperger’s, and a lack of post-diagnosis support and subsequent pathways. From speaking to the parents, I got the impression that diagnosis was seen as something of a golden ticket to the support and help that they are desperate for, but they really have to work for it. It sounds as though there is a hurdle every step of the way.
There is the fundamental problem, at least in Grimsby, that no one knows who is responsible for diagnosis. There is no clear division of responsibility between the clinical commissioning group and the child and adolescent mental health services. The issue is particularly acute for 16 to 18-year-olds. As a support worker put it to me, “If you are 16 to 18, you can forget about being diagnosed”. I would be grateful to the Minister if he clarified which body has the legal responsibility for diagnosis for people between those ages, and if he explained why they are not currently being diagnosed.
Many parents feel that schools, the local authority and the clinical commissioning group are reluctant to statement children, which prevents them from accessing the additional services they need. Does the Minister believe that there may be an issue in that councils and schools are not as proactive as they could be in diagnosing children? Some people have complained about assessments being done out of area. If long journeys are likely to exacerbate the worst symptoms of the condition, some people simply will not take their children, who will therefore miss out on the help they so desperately need.
Autism and Asperger’s on their own can be difficult conditions for people and their carers to cope with, but as was said by the hon. Member for Congleton (Fiona Bruce), who is no longer in her place, comorbidity is very common and can make diagnosis even less likely. It is a real frustration for carers when people receive help for ADHD or anxiety depression, for example, before they even receive a diagnosis for what they feel is the core problem. Obviously, help for co-existing conditions is welcome and necessary, but when it supersedes autism or Asperger’s support, it is simply seen as messing around at the edges.
Whether or not children have been successfully diagnosed with autism or Asperger’s, they are still held back in their education and find it difficult to break into the jobs market. Too often autistic children are put in the naughty box at school. NASUWT research shows that most teachers do not feel they have had adequate training to teach children with autism, which is worrying given that 70% of autistic children are educated in mainstream schools. I believe that children with autism can absolutely succeed at school, but if teachers are not properly equipped to help them, they are too often simply written off. I find it shocking that, as the hon. Member for Dudley South (Mike Wood) mentioned, the majority of school exclusions are for children with special educational needs, yet they account for only 15% of all students. How can that be compatible with section 85 of the Equality Act 2010, which specifically prohibits discrimination against a pupil
“by excluding the pupil from the school”?
On leaving school, young people with Asperger’s and autism often struggle to maintain long-term employment, or even to get a job in the first place. Navigo, a charity in Grimsby, runs shops and garden centres that provide opportunities for work and training for people with mental health conditions. It is a really valuable scheme, and as my hon. Friend the Member for Birmingham, Yardley (Jess Phillips) mentioned, I would like more employers from outside the charity sector to do the same. I am sure there is plenty that the Government could do to promote employment for people with mental health conditions in the public sector, as well as to incentivise private sector firms to do so.
Of course, some employers already do a lot to encourage disabled people to apply for jobs with them—for instance, by including the “Positive about Disabled People” symbol in their job adverts. Although disabled people are advised to look for that symbol in adverts, I do not understand why jobcentres do not hold lists of employers in the local area that are so certified. Surely that would be a relatively simple and helpful step for jobseekers with autism and Asperger’s. I hope the Minister will join me in calling on my local jobcentre to collect such information and start sharing it with autistic jobseekers.
Overall, there needs to be a better understanding of autism and Asperger’s across society, diagnosis needs to be much more common and the process for parents who are seeking a diagnosis needs to be made much easier.
Jonathan Reynolds (Stalybridge and Hyde) (Lab/Co-op)
I, too, thank the right hon. Member for Chesham and Amersham (Mrs Gillan) for securing this vital and much-needed debate. Like her, I thank the Solicitor General, the hon. and learned Member for South Swindon (Robert Buckland), who I am sure would be speaking today if he was able to do so.
I speak not just as the vice-chair of the all-party group on autism and as an MP who has dealt with many pieces of casework involving families touched by autism, but as the father of an autistic child with learning difficulties. I wanted to share some personal insights into living with a family member with autism, but I realised that, unfortunately, the speech I brought with me would probably have lasted for the full duration of the debate, so I am not able to give it. However, I want to pay tribute to some of the excellent national and local organisations that help to support children and adults with autism, and to say a little about how I want services in my area of Greater Manchester to develop in the future.
I am extremely blessed to be the father of four beautiful children. My eldest child, Jack, was born when I was a new graduate in my early 20s. I remember listening to the radio while driving home from the hospital, the day after his birth, when Elton John’s “Circle of Life” came on, and feeling tremendous excitement, as all new parents do, as well as a healthy dose of nervousness about life never being quite the same again.
As we were young parents—in particular, we were the first in our peer group to have children by several years—I suppose that, in hindsight, we missed the early signs that something was not quite right. Jack’s mother and I unfortunately separated just a year after his birth, and many of the things we saw we understandably attributed to the difficulties of having two homes and two different families. But slowly we came to see that everything was not quite as it should be, particularly when taking him to things like football and swimming, where he could not follow the rules and societal norms of the situation he was in.
Receiving the news of that diagnosis is a very hard moment. There is no denying that there is a sense of anger and of guilt, and sometimes a sense of shame. But there is also a sense of relief, and many parents—some are perhaps watching this—who are struggling for that diagnosis themselves will be looking for the sense of relief it brings.
Of course, there are big consequences for family life. We have heard about families feeling difficulty in going out because of the reaction that they get. Members can imagine that that is particularly hard when you are the local MP in attendance at large noisy civic occasions that are really mandatory for the job. As well as everything that has been said on diagnosis, on provision of healthcare and on mental healthcare provision in particular, the challenge we face is to make our society more autism-friendly.
There are some brilliant people who are doing that in this country. I commend the work of the National Autistic Society and its recent campaign, “Too Much Information”, which I believe is its most powerful yet. I was touched by the film shot entirely from the perspective of a child with autism walking through a shopping centre, which gives in about a minute an insight into the discomfort, sensory overload and claustrophobia that are normal for many people with autism. When the child ultimately has a meltdown the viewer understands why. There are many other organisations I would like to have had the time to talk about, including Ambitious about Autism, and Autistica and the work it funds in medical research into the causes, diagnosis and treatment of autism.
I see tremendous work in this country not just from the third sector but from companies. The example of Asda has been given. Many cinema chains are now embracing autism-friendly screenings, which I find absolutely fantastic. My own beloved football club, Sunderland, has built a new sensory room in the stadium for autistic fans, so something may now available to me that never had been before, that feeling of taking my son to a football match. I will probably wait until next season before I take advantage of that.
Another company leading the way is Manchester Airports Group. It now fast-tracks families with autistic children through the stressful environment of airport security. It has created videos and booklets that help prepare people for what to expect from their airport experience. Its thoughtfulness is literally helping to open up access to a much wider world for people with autism in Greater Manchester and beyond.
That brings me to my final point, which I will not quite have the time to go into. Greater Manchester is already performing well in the national NHS strategy for autism. My hope is that, with the devolution of health provision, we can make Greater Manchester the world’s first autism-friendly city region. I want to see more of our public spaces accessible to people with autism, more of our public servants empowered as autism champions and an ambitious strategy for education and employability. I want Greater Manchester to be a beacon of best practice for autism across the world. I hope that the Minister will share that ambition.
Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)
I congratulate the Backbench Business Committee on granting this debate, and the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing it and on being an autism champion. As a clinical psychologist I have worked with many people who have autistic spectrum disorder. I put on the record that it is a privilege to be a member of the all-party parliamentary group on autism and to be a co-sponsor of the debate.
Autistic spectrum disorder is a pervasive lifelong developmental disorder that affects people’s social interactions. It impacts on how people communicate with others, how they relate to people and how they experience the world around them. Being a professional is one thing, but the key lesson we must learn is that the greatest insights come from those who have autistic spectrum disorder and their families. We must listen very carefully to what they tell us.
We know that how we interact with individuals with ASD and their families can have a huge impact on their quality of life. Negative public reactions can encourage people and their families to avoid situations and social contact, leading to their becoming socially isolated and experiencing mental health difficulties.
Dr Philippa Whitford (Central Ayrshire) (SNP)
The debate has covered a lot of the structural and supportive things that need to be done, but does it not also throw down the gauntlet to us about the need to change our view? We think of people with autism as finding it difficult to see the world as we see it. We actually need to see the world as they see it.
Dr Cameron
As usual, my hon. Friend makes an excellent point. We must focus not on the difficulties faced by those with autistic spectrum disorders but on their full potential, and we should have greater awareness of the world as they view it.
Research indicates that 66% of autistic people, and 68% of their families, have reported feeling socially isolated, and 70% of autistic individuals are reported to have mental health disorders such as anxiety or depression. Autistic adults have been reported to be nine times more likely to die from suicide. There is a clear need to address comorbidity, and particularly mental health difficulties.
One constituent who contacted me advised that the “Too Much Information” video and campaign, which must be commended, had resonated with her. Her eight-year-old daughter has autism, and she shared with me some of her personal experiences. Her daughter is extremely vulnerable and sensitive to everyday sights, sounds, touches and smells, which cause her anxiety, panic or obsessive worries and despair. She cannot cope with changes to her environment, and she is prone to becoming distressed in public. As a result, she has experienced negative community responses, including from school peers. Her reaction has been reluctance to go back to school, and withdrawal from her extracurricular activities. Sadly, that means that she is at risk of becoming further isolated, and it is clear from this story—such stories were common among those who contacted me—that we all need to do more in many areas.
I recently attended Milton Primary School in my constituency, where the lack of understanding about pupils with autism among peers and their parents was highlighted to me. The headteacher is now engaged in good work to increase understanding through planned awareness sessions, and I commend her on that fantastic local development. Again, that highlights how teacher training and awareness in schools is key.
As has been mentioned, we must raise awareness and understanding among employers to help support people with autism into employment. Having a job is about earning a living, but it also contributes to psychological wellbeing. It can provide people with a sense of belonging and purpose, and build confidence and self-esteem. The autism employment gap is even bigger than the general disability employment gap, and only 15% of autistic adults in the UK are in full-time work. The Association of Graduate Careers Advisory Services has reported that 26% of graduates on the autistic spectrum are unemployed. Mainstream employment programmes currently on offer are failing to capitalise on the potential of those with autism. I urge the Minister to ensure appropriate support for people with autism, and for that to be covered by proposals in the disability and employment White Paper.
In 2011 the SNP Scottish Government launched the Scottish strategy for autism, and declared that autism is a national priority. That strategy attempts to improve diagnosis and assessment, and to create consistent service standards. It also helped to establish one-stop shops. We must continue to support that issue, and I offer my full co-operation and involvement with my hon. Friend the Member for Motherwell and Wishaw (Marion Fellows) to save our local one-stop shop.
We must all be champions of autism, and I ask the Minister to support an awareness campaign, promote training for teachers and local authority staff, tackle issues raised in the White Paper, ensure that more clinicians are trained, and consider waiting time guidelines. Society must not continue to fail people with autistic spectrum disorder, so let us do all that we can together to ensure that we succeed.
Liz McInnes (Heywood and Middleton) (Lab)
It is a pleasure to be the final Back-Bench speaker in this fantastic debate. I have been here for the whole of it, and I particularly thank my hon. Friends the Members for Birmingham, Yardley (Jess Phillips) and for Stalybridge and Hyde (Jonathan Reynolds) for their amazingly personal speeches, which brought home to everybody what it is like being the parent of an autistic child. It would be remiss of me not to thank also the right hon. Member for Chesham and Amersham (Mrs Gillan) for securing the debate and for all her brilliant work. [Interruption.] She is indicating she wants me to get on, so I will.
I could not help but compare the incidence of autism to that of dementia. The figures are very similar: an estimated 800,000 people live with dementia in the UK, compared to an estimated 700,000 on the autistic spectrum. While I would not wish to play one off against the other, it is significant that the Government spend on autism awareness is £325,000, whereas the spend on dementia awareness, at £2.3 million, is significantly more—although campaigners would probably say it is not enough. I pay tribute to the National Autistic Society, which has done fantastic work to raise awareness of autism, and, like many hon. Members, I welcome the “Too Much Information” campaign.
Many Members have mentioned waiting times for diagnosis, which is a really important part of dealing with autism as it helps people to take control of their lives and to unlock barriers to essential support and services, and it enables families to better understand their child and to explain to them their many years of feeling different. We have talked about how long adults and children have to wait for a diagnosis. The NICE quality standard on autism is clear that, once referred, people should wait no longer than three months for their first diagnostic appointment, but that is clearly not being consistently met across the country. The NAS calls on the Government and NHS England to prioritise reducing waiting times for autism diagnoses, which would also help the NHS to reach its own goals of preventing mental illness. Will the Minister task NHS England with monitoring diagnosis waiting times for each clinical commissioning group, in order to reduce health inequalities for autistic people in line with NHS England’s mandate?
I will touch on teacher training, although much of what I wanted to say has been said. The vast majority of autistic children—over 70%—are in mainstream education, meaning that every teacher is likely to have children with autism in their classes during their career. A constituent of mine, Julie Atkins, got in touch when she heard I was taking part in the debate. She said:
“My son attends mainstream secondary school…and although he has a certain level of good support, there are a number of teachers who do not ‘get him’. Every child on the spectrum is different and an hour’s ASD training does not give people the understanding they need. There is no rule book and more empathy and understanding of sensory issues would help teachers to understand why my son may be fine one day and not the next.”
I support the call for autism awareness training to be included in the new teacher training framework. The words of my constituent explain why it is necessary.
I was pleased to see the initiative at the Asda store in my neighbouring constituency of Blackley and Broughton. The store manager, Simon Lea, said he wanted to help, having seen a boy with autism struggling to cope in the shop. On Saturday 7 May, therefore, in order to help autistic and disabled shoppers, the store will open an hour early, with no electronic distractions, such as escalators, music and televisions, and the public address system will not be used for announcements. I might well go there myself.
Mike Weir (Angus) (SNP)
I, too, congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate. Like the hon. Members for Berwick-upon-Tweed (Mrs Trevelyan), for Birmingham, Yardley (Jess Phillips) and for Stalybridge and Hyde (Jonathan Reynolds), I want to add the perspective of a parent of a child with autism.
My younger daughter, now in her 20s, is autistic, with associated learning and communication difficulties. I, too, went to the launch of the booklet, “Too Much Information”; it is excellent and I recognise much of what appears in it. There are two telling statistics on page 2: 87% of families living with autism say that people stare at their child’s autistic behaviour; and 74% say people tut and make disapproving noises. Over the years, I have experienced both of these. Like many parents, I developed a very thick skin. I know one parent who said that the worst thing for her was that people who she knew and spoke to regularly would ignore her when they met her and she was accompanied by her autistic son. How hurtful can that be?
One of my constituents, Karen, contacted me ahead of this debate and asked me to say something about her experience. This is what she said:
“I have two children with autism who find going out overwhelming. I have one that will try and hide while the other will shout, become aggressive or laugh hysterically. We are stared at by the public and comments are made regarding my ability to parent or that my children are spoiled. My eldest is becoming aware of these comments and this causes her psychological distress.”
Many parents will recognise that.
As parents we find different strategies to deal with our children’s behaviour. It is often the unexpected that hits us. Our daughter was, and still is, fascinated by Disney cartoons. When she was younger, her favourite was “Cinderella”, especially the mice that were Cinderella’s friends, Jaq, Gus and Suzy. She has soft toys from the Disney store, and she carries them everywhere. We took her on holiday to Disneyland Paris. On the first day there, Cinderella was out and about, and we took her to meet her and her friends—but, of course, the mice she met were not the small characters she expected. They were bigger than her, and she simply could not cope with that—it was not what she expected. Like other families, we spent the rest of the holidays checking where the characters would be on each day—but they to go and meet them, us to discover ways and routes to avoid meeting them.
We face a similar problem every year with summer fairs, coffee mornings and similar events, now that so many have face painting for children. Our daughter simply cannot comprehend what is happening when children have their faces painted to look like a tiger, a cat or some other animal, and she will freak out if she sees it. We have to carefully avoid taking her to such events.
My daughter still loves her cartoons, particularly “Thomas the Tank Engine”, which she watches on video so she can pause, rewind and watch repeatedly small sections that appeal to her. Frankly, after 20 years of this, I could cheerfully strangle the Fat Controller, but I also live in fear of the day when the video machine finally gives up the ghost, because such machines are not so easy to get hold of these days.
In many ways we are lucky: we live in a small town and most people know us; our daughter is well known in the local shops and particularly in the charity shops throughout Angus where she hunts for videos. She is accepted, and no one really bats an eyelid at her sometimes seemingly odd behaviour. In common with many autistic people, my daughter needs the comfort of routine. When we go shopping, we go round the shops in a specific order. It may not be a logical order to anyone else, but that is the order in which it must be done. If it is not, there will be trouble.
If we are going to do something different from our usual routine, we need to lay the groundwork well in advance, explain what we are doing, when we are doing it and why, and let our daughter think through it and mull it over for some time, discussing the implications with her. Sometimes we can manage to do that.
I am conscious of the fact that this may all sound a little depressing, but as with any child, there are joys as well as challenges. One of the things my daughter’s school did was to take her to Riding for the Disabled—and she took to it like a duck to water. Neither I nor my wife had any background with horses, but our daughter was captivated and formed a real bond with the horse. It is quite incredible and joyful to see her on a horse, concentrating on what she is doing and on the direction of the instructor as she guides a horse around the course, making it trot and being very much in charge. I remember going up to the stable on one occasion to find her being given a frightening-looking instrument to hoick stones out of the hooves of a horse. My daughter was cheerfully doing that—something I would never have attempted.
I was a practising solicitor at the time, and my wife—rather ironically, perhaps—had been a teacher of children with special educational needs, yet we had difficulty in negotiating the system and securing education that was suitable for our daughter. We first had to obtain a record of needs, which, at that time, was a passport to the provision of the educational resources required. It sounds easy, but we faced the apparent reluctance of professionals to give a clear diagnosis of what was wrong with our daughter. That is an experience that many other Members have described. The education department involved said that a child should not be labelled; the cynic in me wonders whether that was because once a record of needs had been granted, the facilities would have to be put in place and costs incurred.
After that, we needed to find a suitable school. We looked at many before we found one that we felt understood the difficulties and offered a way forward. It was not within our local authority area, although it was close to our home, and we had to negotiate around that to ensure that funding was available. A deal was done, which required us to arrange transport to the school ourselves. That school made a great difference to our daughter. It was a small school attended by other children with special needs, and it had an excellent speech therapist. Our daughter flourished, and, as I said earlier, it was there that she got into horse-riding.
Are things better today? Yes, I think they are. Are they perfect? No, of course they are not: there is a huge amount still to be done. As some of my hon. Friends have pointed out, the Scottish Government have a strategy for autism, which is a real attempt to bring services together and ensure that autistic people are given the assistance that they need. That does not apply only in the public sector, but I should mention that in Arbroath we now have a fantastic community dentist. We had great difficulty in persuading anyone to look at our daughter’s teeth, although not because it was thought that she might bite them if they tried! The community dentist, however, had been trained in providing dental care for autistic people. Our daughter was introduced to the dentist’s surgery gradually: she was taken into the waiting room first, and was taken gradually onwards. The dentist managed to look at her teeth, and they were fine, which is just as well.
As I have said, however, the Scottish Government’s strategy does not involve just the public sector. A few years ago Aberdeen airport introduced a similar scheme, allowing autistic people to visit the airport and become used to it before their first flight. Cinemas and theatres are now putting on special shows for autistic people: the sound is lowered and the lighting increased to make the experience easier. However, difficulties remain, and many other Members have spoken of them.
In my experience, the transition from education to life after education is very difficult. In many instances, there are not many facilities for autistic people. It can be very difficult, especially in rural areas, to find somewhere to move on to after school, and the future is uncertain when it comes to such matters as housing. At our age, our thoughts begin to turn to what will happen when we are gone. What housing and other help are available to people like my daughter, who will never be able to lead an independent life? All authorities must consider that growing problem.
If there is one thing that I would ask of those who are watching the debate, or who will read the report of it, I would ask them to get hold of the National Autistic Society’s excellent booklet. The next time they see a child being loud or inappropriate, or a parent having difficulty controlling a child, they should not assume that it is a case of bad parenting or bad behaviour, as my constituent Karen said. Something else may be going on, and it could well be autism.
Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)
I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan), and the other sponsors of the debate, on enabling the House to discuss the important issue of autism. Let me echo a remark that was made by my hon. Friend the Member for Heywood and Middleton (Liz McInnes). We have heard many excellent speeches, but I am particularly grateful for the contributions of Members who have shared their experiences as parents of children with autism. That added greatly to our discussion.
I welcome one of the central calls in the motion, the call for an enhanced national awareness campaign. Raising the profile and public understanding of autism would break down some of the stigma, tackle the prejudices, and make it easier to explain autism to those who remain unaware of the realities of the condition. I pay tribute to the charities working in this field, including the National Autistic Society, Autistica, and Ambitious about Autism, which are fighting for people with autism and their families. They are campaigning for proper diagnosis, decent treatment, social acceptance and full, productive and dignified lives for people with autism. I also commend the many organisations, campaigns, towns and cities that are doing so much to raise awareness. There have been many contributors to the debate, but I have only eight minutes so I hope that hon. Members will forgive me if I do not mention them all.
The National Autistic Society has brought some important survey evidence to our attention. It has already been mentioned in the debate, but it is worth reiterating that although almost the entire population of this country has heard of autism, only 16% have any real understanding of the condition. That reveals a huge gulf between awareness and understanding, which is why a national campaign to develop better awareness of the realities of autism would be a welcome development. It should be led by, and involve fully, people with autism and their families, so that the campaign can be authentic and focus on the issues that really matter. Research by Ambitious about Autism has highlighted two specific audiences for such a campaign: teachers—40% of whom say that they lack the knowledge they need—and employers and jobcentres. While 99% of young people with autism say that they want to work, only 15% of adults with autism are in employment.
It is clear that people with autism and their families face terrible prejudice and stigma. The figures in the National Autistic Society survey show that too many people with autism and their families feel socially isolated or do not go out because they are worried about how the public will react to their autism. My hon. Friend the Member for Lancaster and Fleetwood (Cat Smith) shared the fact that people do not understand what a meltdown is. People are sometimes asked to leave a public space because of behaviour associated with their autism. This paints a picture of social isolation and daily humiliation. Autism is a condition in which people have difficulty interpreting the world around them, and that is compounded by the reactions and hostility of other people.
It is obvious that we are a long way from having public spaces that are safe for all people with autism. I welcome the fact that my own city, Liverpool, has started a bid to become one of the first autism-friendly cities, but we need to become an autism-friendly nation. [Interruption.] The Minister for Community and Social Care, mentions Manchester from a sedentary position, and I note the remarks made by my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds) in that context. I hope that the Minister will address the issues of awareness, stigma and prejudice. I hope that he will also commit to supporting the Autism Access Award, to ensure that our public buildings and spaces are autism friendly. I am pleased that the House of Commons started work on this earlier in the year, and I hope that we can make progress to ensure that our workplace also becomes autism friendly.
Many hon. Members have mentioned the challenges relating to the Department of Health. Will the Minister tell us what efforts individual Departments and agencies beyond the Department of Health are making to support people with autism and which Departments and agencies have an up-to-date strategy for dealing with autism? What commitment will he make today to ensure that any that do not have such a strategy will adopt one?
The second substantive part of the motion relates to the length of time it takes to diagnose someone with autism. Many Members on both sides of the House have talked about this today. Autism requires an early diagnosis to enable individuals with autism and their families to be properly supported. As we have heard, however, adults are having to wait more than two years for a diagnosis, and for children, the figure now stands at 3.6 years. On my weekly visits across the country, I hear many of the stories that have been echoed in the Chamber today. In my own city, Liverpool, there are no fewer than 700 families waiting for an assessment. That is totally unacceptable; it is far too long. The long wait compounds the condition and makes a bad situation worse.
I have heard at first hand from the Liverpool Autistic Children’s Alliance, a parent support group that meets in my constituency, the difficulties experienced while waiting for a diagnosis, particularly in relation to education. The parents talk about not getting an education, health and care plan and therefore having no access to training to help them to support their children. They also speak of challenges in accessing appropriate education. We have heard that the NICE quality standard on autism makes it clear that people should wait no longer than three months, once referred, for their first diagnostic appointment. That standard is clearly not being met across the country, meaning that thousands of people are being let down. Given the importance of prompt, accurate diagnosis, I hope that the Minister will commit to asking NHS England to report on autism diagnosis waiting times for every clinical commissioning group in the country and then to hold them to account when the waits are too long. I hope that he will also ensure that NHS England’s new autism care pathway includes and reduces those diagnostic waiting times.
Research presented by Autistica and drawn up by the London School of Economics shows that the costs associated with autism are more than those of cancer, heart disease and stroke combined. They are at least £32 billion a year and include expenditure on hospital services, home healthcare, special educational facilities and respite care and lost earnings for both people with autism and their parents. Despite the costs, the outcomes for people with autism remain so poor. We heard during the debate about co-morbidities, extremely high rates of mental illness, poor physical health, social exclusion, lack of opportunities for employment and education, and, tragically, early deaths. Several contributions discussed the amount spent on awareness, but research also has the power to improve all those poor outcomes. Research spending on autism remains incredibly low at just £3 million a year, which is paltry given the scale of the challenge.
As shadow mental health Minister, I am aware that mental illness is also a huge challenge for people with autism, who are far more likely to have at least one mental health condition. The burden of anxiety and depression on people with autism is vast, about which we heard many personal accounts during today’s debate and which I hope the Minister will address in his remarks.
I will conclude on an important point about the fact that too many people with autism in our country are dying too young. The figures are startling. If we look at the research that was in the press only a few months ago, we see that people on the autistic spectrum die on average 18 years earlier than the general population. For autistic people with a learning disability, that figure rises to 30 years. That cannot be acceptable in this country in 2016. People with learning disabilities are at greater risk of suicide, and the most disturbing statistic is that the risk of people with autism committing suicide is nine times higher than that for the typical population, which is a scandal. I raise it during this debate because, as we have heard in some contributions, it is a particularly specific and pertinent issue that needs addressing, particularly in the light of the fact that suicide prevention organisations are not providing autism-appropriate services. From representations from many autism organisations, I know that phone lines for those who might be having suicidal thoughts are not appropriate for someone with autism. I hope that the Minister will address suicide prevention strategies and ensure that they are appropriate for people with autism.
I welcome today’s debate and its many superb, thoughtful speeches. I hope that the families listening to our discussions will feel that we are addressing their many concerns. I look forward to the Minister’s reply.
The Minister for Community and Social Care (Alistair Burt)
It is just about 24 years since I first walked into Richmond House as Parliamentary Under-Secretary at the then Department of Social Security. In that time, I have had the privilege of being involved in many debates that belie the common view outside this place that we either know nothing about a subject or are not personally involved and do not care. I would put this debate right up there with the very best that demonstrate that neither of those things is true.
We have heard remarkable speeches, including 25 Back- Bench contributions, which is a tribute both to colleagues and to the Chair. As the hon. Member for Liverpool, Wavertree (Luciana Berger) mentioned, it is impossible to cover everything, or even everyone’s speech, as we normally do, but the contributions from my hon. Friend the Member for Berwick-upon-Tweed (Mrs Trevelyan) and the hon. Members for Birmingham, Yardley (Jess Phillips), for Stalybridge and Hyde (Jonathan Reynolds) and for Angus (Mike Weir) were particularly noteworthy in giving a sense of what things must be like. We are indebted to all of them for being able to say what they said in the way that they did.
I want to mention a couple of other speeches, such as that of the right hon. Member for North Norfolk (Norman Lamb). I am trying to do something about the fog, and I will mention that a little later, and many of us heard the moving and difficult story of the nine-year-old boy. The hon. Member for Barrow and Furness (John Woodcock) talked about the media response, and both the programme and the book he mentioned will make a significant contribution. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for the way in which she brought the young man’s case to me, and I assure her that it is not all done and dusted yet. Some very difficult aspects of that case worried me hugely, and we will be talking about it further. I made absolutely certain that the parents were involved in the case review, because, as she and the right hon. Member for North Norfolk said, all too often people are not involved and are somehow excluded, and that has got to stop. It is vital that people will be thoroughly engaged.
I wish to start by commending the Member who moved the motion—I cannot remember who that was now. [Laughter.] Let me add my congratulations to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on the extraordinary work she has done over the years in this area. We really are all indebted to her. In a recent Adjournment debate, I recognised the need for a fuller discussion and mentioned that we could do with this debate, and I am grateful that we have had that opportunity today.
A number of hon. Members have highlighted the importance of recognising that autism is not a person’s defining characteristic. Many colleagues, particularly those with children, made moving points about the qualities that autistic people have, and that is very important. In a couple of weeks’ time, I am going to the Hitchin LEGO club, which was started by parents of a child whose particular skills related to detail and the bits and pieces the club does. I am looking forward to going to see that. It is important that we do not just define people in this way, and the changes we make every day to attitudes, services and facilities can mean the difference between ambition thwarted and opportunity fulfilled. The best campaigns, at least those intended for the benefit of the common good, are led not from the top or from some central point of government, but by people on the ground.
Autism awareness is being addressed directly by the National Autistic Society in its excellent new campaign, which was launched during world autism awareness week and to which I gave my support. I went to see not only the little boy who is the subject of the film, but his family, because there are often siblings of those who have autism and they need to be cared for and valued as well. Sometimes issues can arise in that regard. It was nice to see the whole family and it is a remarkable piece of film. I also wish to highlight the work the Department of Health has taken forward with the Autism Alliance UK, a large network of autism charities, on the “Connect to Autism” project, which encourages local organisations, services and companies to become autism champions by training staff in autism awareness—there is a lot more to do.
I have no time to deal with all the subjects that have been raised, but in accordance with what has become my usual practice, because I seem to speak in vastly oversubscribed debates, I will pick out the questions that colleagues have raised and answer them by letter. If colleagues do not mind, I will answer them in the same letter and then put a copy in the Library, so that everybody will get a chance to see all the answers to the various questions that have been raised, which my hard-working team have noted. Let me just say a couple of things in answer on the key issues of what the Government are doing, and of diagnosis and data.
First, although it is easy sometimes to be overwhelmed by what there is still to do, it is important to recognise where we have come from—many Members made that point—and to realise what we are doing on a day-to-day basis. I commend to the House the “Progress Report on Think Autism: the updated strategy for adults with autism in England” which was published in January. I put that together along with the Under-Secretary of State for Disabled People, my hon. Friend the Member for North Swindon (Justin Tomlinson), the Minister for Children and Families, my hon. Friend the Member for Crewe and Nantwich (Edward Timpson) and the Under-Secretary of State for Justice, my hon. Friend the Member for South West Bedfordshire (Andrew Selous), who deals with prisons, probation, rehabilitation and sentencing. It sets out progress against 33 of the “Think Autism” actions and describes some of the work going on across government, because it absolutely involves education, employment and all sorts of other things. The report details case studies and it demonstrates what is being done in different places around the country.
Let me come straight to the challenge of diagnosis, which is so important to many Members. There is no doubt that, in some parts of the country, the demand placed on services—it is often the sheer weight of numbers—means that the NHS and its partners can struggle to meet the standards set out by NICE. The Department of Health’s mandate to NHS England for 2016-17 calls on the NHS to reduce health inequality for people with autism. Waiting too long for a diagnosis can be one of the health inequalities that autistic people face. The mandate has already got that, and it is very important that it relates to autism.
Clinical commissioning groups and NHS England are working to bring down the waits in line with NICE guidelines. What is happening right at this moment is that the Department of Health and NHS England, supported by the Association of Directors of Adult Social Services, have initiated a series of visits to CCGs and local authorities. The visits aim to develop a better strategic oversight of the challenges in securing timely diagnosis across all ages and to share good practice. In essence, that means that we should look at the variability in diagnosis times and do something about it. Sometimes there is an issue of capacity. It is not a question of just pulling a lever and the waiting times will come down. For waiting times to make any sense, we must recognise the capacity to deal with them. NHS England is trying to understand the difference in variation in order to do something about it.
NHS England will complete its work this month and then report to the cross-Government Adult Autism Programme Board in June. That report and the discussion at the board will be made public. The Department of Health is also funding the University of York to report on the type of support that is available after a diagnosis.
My right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) asked that NHS England should collect, publish and monitor key information on how long people are waiting for diagnosis and how many people are known to their GP to have autism. She said that waiting times standards on mental health, which are currently in development, should reflect national guidance that no one waits longer than three months between referral and being seen for diagnosis. I can assure Members that I am keen to ensure that we collect more data and that the data are made public. I am keen that the NHS collects what is known locally and finds a way in which we can use that nationally. New datasets have been put in place—I will say something about them in a minute—but it is important that we acquire more data. I have been made aware of that matter and I am trying to do something about it.
Alistair Burt
I will take just this one intervention, because I am on a tight timetable.
Norman Lamb
Will the Minister consider setting a maximum waiting time standard of three months to enter diagnosis? We all know that once we set a standard, the system responds to it, and we need that for anything to change.
Alistair Burt
I do understand that, but, equally, the capacity has to be there to do the job. It is a fine balance. To set a waiting time limit as some sort of token, knowing that it cannot be reached, would not work. Equally, the pressure on the system through collecting data, asking for data, and seeking transparency has its effect as well. There is a real sense in the Department that we have to meet that challenge, and I am looking at what data can best be collected, what data need not be collected centrally, but can be handled locally, and how we make the difference and how that is transparent and made known.
The Department of Health does not set out how NHS England should monitor waiting times. How NHS England holds commissioners to account is for it to determine, though it will need to demonstrate effectiveness in meeting the mandate requirement through which we expect NHS England to strive to reduce the health gap between people with mental health problems, learning disabilities and autism and the population as a whole. Even now, in the configuration of the NHS, the NHS does not directly report to me on this particular issue. I am really interested in how the NHS ensures that CCGs are doing their job, and I suspect that Members of the House are very interested, too. I can use that concern and interest and make sure that that monitoring job is done and that it is transparent.
My right hon. Friend also mentioned GPs. GPs already maintain a register of people with learning disabilities, which may include patients on their lists who also have autism where this has been diagnosed. As a number of Members mentioned, autism may not be the only condition that an individual may have.
The Royal College of General Practitioners’ autism initiative, part-funded by my Department, is looking at the idea of an autism indicator in general practice. That work is at an early stage. I hope that is helpful to my right hon. Friend. As recommended by the independent Mental Health Taskforce, the Department of Health is developing a five-year plan for the development of mental health data, to be published by the end of this year. The plan will set out future data requirements and timings for developing data to inform pathways of care, which will include data requirements for autism. This will be of great interest to the hon. Member for Liverpool, Wavertree, and I will make sure that she keeps up to date with data, as she keeps me up to date with data requests.
This has been a terrific debate which has covered many different aspects. To sum up, autism should never be a barrier to enjoying the access and opportunity afforded to others. The National Autistic Society, the Autism Alliance, the all-party parliamentary group on autism and many other charities are doing great work, helping more of us realise that sometimes we are the barrier, beyond legislation. It is only through empathy and understanding that true progress can be made and sustained.
Finally, there are two quotes that everyone should take from this debate—first, “Everybody feels like it’s a fight.” I have heard that too often, as too many of us have. Everything the Department does must make that sense of fight a little easier, until no one needs to fight because their needs are taken for granted. Secondly, “Think differently about thinking differently”—absolutely. That is what we should all do. I hope that that is a message from a very consensual House of Commons this afternoon.
Mrs Gillan
The debate has had an instant effect. A green card was brought to me with the message, “Thank you so much, but please don’t let it just be kids, kids, kids. Don’t forget the older adults.”
This debate has brought out the best in Parliament and in parliamentarians across the board. There have been important contributions and some amazing personal testimony from Members who are clearly concerned about the subject and about what is happening to their constituents. There is no doubt that progress has been made, but the theme of the debate has been that there is not enough support and understanding. That has come across only too clearly.
I thank all the colleagues who have participated in the debate. I know that the Government are listening. I raised with a Cabinet Minister the lack of people on the autistic spectrum being put forward for public appointments. Yesterday I received a letter saying that he had asked the Centre for Public Appointments to work with Departments across Whitehall to improve diversity and the representation of autistic candidates. That means that people on the autism spectrum can achieve right to the top of our system.
I thank the Minister particularly for his assurances on data collection. I look forward to reading his letter, which he is placing in the Library for all of us. I thank him for the work that he has done but, more importantly, I thank him for the work that is yet to come.
Question put and agreed to.
Resolved,
That this House notes that World Autism Awareness Week was held from 2 to 8 April; believes that there is a lack of understanding of the needs of autistic people and their families; and calls on the Government to improve diagnosis waiting time and support a public awareness campaign so that people can make the changes that will help the UK become autism-friendly.