World Autism Awareness Week

Cheryl Gillan Excerpts

Thursday 28th April 2016 Commons Chamber

[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 Robin Walker (Worcester) (Con)]

rose—

[Mrs Gillan]

At last—the relief of Mafeking.

[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?

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[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.

[Norman Lamb (North Norfolk) (LD)]

Will the right hon. Lady give way?

[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—]

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[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.

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[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.

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[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.