Autism

Barry Sheerman Excerpts

Thursday 29th March 2018 Commons Chamber

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

Thank you very much, Mr Deputy Speaker.

I got involved with the autism cause, if I can call it that, very largely because of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who really paved the way with her private Member’s Bill and everything she has done with the all-party parliamentary group on autism. When I was Chair of the Education Committee and then the Children, Schools and Families Committee for 10 years, we looked at special educational needs in some depth, but I never persuaded my Committee to drill down into the autism area strongly enough, so I always had a guilty conscience about that.

After finishing as Chair of the Select Committee and indeed finding that one of the members of my large family is on the autism spectrum, I was energised to get more involved. Working harmoniously with the all-party group, I and others founded the Westminster Commission on Autism. We have already, in a very short period, produced two reports. One of those, “A spectrum of obstacles: an inquiry into access to healthcare for autistic people”, has already brought about substantial changes in how people perceive such healthcare. We found out how worried people on the autism spectrum were about going into an A&E, with the busyness, the lights and the noise, or even going to a GP. Access to healthcare is strictly limited for many people on the autism spectrum. I am delighted that the report has had such a great influence.

[Daniel Zeichner (Cambridge) (Lab)]

Does my hon. Friend agree that initiatives such as the autism hour promoted by the National Autistic Society last year—where shops opened for an hour with their lights dimmed and drew attention to how, exactly as he describes, going into a busy place can be difficult—are very good ways to raise public awareness?

[Mr Sheerman]

My hon. Friend is absolutely right. Indeed, I would urge Members of Parliament to encourage autism-friendly environments in their constituencies. Having soft lighting and not too much noise can make a very big difference to accessibility.

This is World Autism Awareness Week. As I said, the Westminster Commission on Autism works very closely with the all-party group. Indeed, the right hon. Member for Chesham and Amersham is a member of the commission. Yesterday, we were proud to launch a report called, “A spectrum of harmful interventions for autism”. Many people in this country—very wicked people—play on people’s stress, worries and concerns and sell treatments for autism that really should be banned. They use social media. It is a disgrace in our society that people prey on very stressed families with children or other members with autism. We took evidence on this, and it was really upsetting to hear about the kinds of treatments and therapies that were on offer. It is a very interesting area, because it is unclear whether it is covered by the food regulator or the medical regulator, so no one is quite sure who to complain to. Our report has the answer. It is very important, and I hope that hon. Members in all parts of the House will promulgate it.

The most serious thing that we have to address is what happens when someone—usually both parents, but a mother nearly always knows earlier—notices very early on that something is not quite right. Then there is the frustration of not knowing who to talk to, where to go and where the support is. I am not going to be political at all, but one little thing is that children’s services are deeply under pressure in every local authority.

[Mark Tami]

Does my hon. Friend agree that another crucial time is when someone moves from children’s services to adult services? That can be a very traumatic period if it is not handled properly.

[Mr Sheerman]

Absolutely. All my experience suggests that most work now needs to be put into early family support, in every way. People feel so isolated and bereft of support, and bereft of knowledge. Thanks to the right hon. Member for Chesham and Amersham and others, there is a lot of information out there, but how do people get it when they have never even really understood what autism means?

[Andy Slaughter (Hammersmith) (Lab)]

I increasingly get families with autistic children in my surgeries complaining about bad housing conditions in the private rented sector, with overcrowding, really appalling conditions, infestations, noise and so on, but there is also a problem with temporary accommodation and families being moved on. This creates particular stress for autistic children. Does my hon. Friend agree that those making housing assessments should take more account of autism?

[Mr Sheerman]

My hon. Friend is absolutely right. Interestingly, as has been said, this goes right across the whole spectrum. Of course, having access to healthcare is important. Access to education is important, especially when there is a very supportive environment for a child on the autism spectrum at primary school and then going to “big school” is a very big challenge for them. We need to get this right, and support families to support the child at that time.

Recently, many Members were part of the campaign for Lauri Love, a severely autistic, wonderful young man who was in danger of being extradited to the United States. Anyone who met Lauri Love and understood his condition was sympathetic. At the moment, it looks as though we have been successful in supporting Lauri, so that is a great victory.

[Mr Paul Sweeney (Glasgow North East) (Lab/Co-op)]

I was actually at Glasgow University at the same time as Lauri Love, and I remember him well from those days. The situation that my hon. Friend mentions is critical and exactly what we now need to tackle in the UK. We need a national approach, including engaging with the devolved Administrations, to ensure that there is a proper policy framework to safeguard the rights of autistic people across the workplace and in other forms of public life.

[Mr Sheerman]

My hon. Friend is right. We need to spread the knowledge. We need to get the Government, right across the piece—there almost ought to be a Minister for autism—making sure that seamlessly, across all Departments, there is a high level of awareness.

On early diagnosis, the commission heard evidence on what happens in Sweden. Sweden seems to be one of the places that one looks to: I believe that the professor we interviewed was the man who actually minted the expression, “the autism spectrum”. The evidence we were given was that every child in Sweden is evaluated to see whether they are on the spectrum very early on—at seven years of age, I think—so why not every child in the United Kingdom? That is what we should be looking for—early diagnosis and early support of the family.

A lot of people on the autism spectrum fall foul of the criminal justice system. A person on the autism spectrum can get on a bus in a normal way in the morning, then if the bus is cancelled or something else happens that disturbs their routine, that has a very big impact on them. They may behave rather antisocially. The police may be called and they end up in a cell. I have heard this story so many times. The criminal justice system has to look very carefully at the needs of people on the autism spectrum.

[Dame Cheryl Gillan]

I wonder whether the hon. Gentleman has seen the National Autistic Society’s latest film, “Too Much Information”, which is about exactly that problem of somebody being overwhelmed when they are travelling on public transport.

[Mr Sheerman]

The right hon. Lady knows that I accept that wholeheartedly.

I want to finish by saying that it is wonderful that we are having a short debate on autism, but we have to keep coming back to this. It is a very important part of all our lives as Members of Parliament. We must know more, do more and help more, and if that is part of what we manage to achieve this week, I will be very proud of this House.

--- Later in debate ---

[Patricia Gibson]

As the right hon. Lady’s intervention shows, meeting the challenge will not be easy. We still have huge mountains to climb to make life better for people living with this condition.

All these challenges show why we must continue to highlight the condition. It is important not just that people living with this condition can access the support they need but that they feel supported and that they live in a society that does not overlook, shun or ignore them, as has happened too often in the past. The challenges facing those living with autism are not inevitable. With work and education, and by raising awareness and understanding of autism in our communities, much can be done to counteract the negative outcomes they too often face. That is why I want to put on the record the sterling work done in my constituency by community campaigners Suzanne Fernando and her family, Jordan, Arron and Kester. The Fernando family live with autism every day and have worked tirelessly to raise awareness of the condition in their local community of Ardrossan and beyond, and have met with considerable success in doing so. Every year, they put in a huge amount of work to hold a coffee morning to disseminate information on the issue and offer support to those in the community living with the challenges of autism every day. As I have said, we know how isolating this condition can be.

[Mr Sheerman]

We are very impressed by the work that the hon. Lady’s group is doing, but I am slightly nervous about one thing that I am picking up in her speech. A lot of people I meet in the autism community do not like the word “condition”, because it presupposes that it is an illness, which it is not.

[Patricia Gibson]

The hon. Gentleman makes an excellent point. I shall try to refrain from using that word in the future, as I am sure we all will.

If we raise awareness and understanding of autism, the wider public will necessarily display more sensitivity, kindness and compassion towards those living with this condition, and it is this that will help to remove the shadow of loneliness and isolation that autism too often brings. We know that loneliness and isolation are very damaging to general health and wellbeing—their corrosive effects are as damaging as smoking cigarettes—so we could actually be saving lives.

It is not all bad news, however—progress has been made. I am proud that the Scottish Government in 2011 launched the Scottish strategy for autism, declaring that autism was a national priority. But the job is not done—not by a long way. We know that there is no room for complacency, and we can all play our part in developing our awareness and displaying understanding of the challenges and difficulties that those living with autism face every day. I hope that this debate and World Autism Awareness Week have played some small part in that, and that they demonstrate how seriously the House takes the issue.

--- Later in debate ---

[Caroline Dinenage]

My right hon. Friend is as honourable and modest as ever. I also want to thank all the other Members who have worked long and hard on this over a number of years, and those who have contributed so beautifully today. This high-quality debate has included strong personal stories and great examples of fantastic constituency work.

I thank the Backbench Business Committee for enabling this debate to happen during World Autism Awareness Week. It has given us the opportunity to draw much-needed attention to the challenges that autistic people, and their families and carers, face on a daily basis. Members who have spoken are absolutely right to say that we need to understand more about autism across all sectors of society and in all parts of government. I share their determination to address this important issue.

Since the introduction of the autism strategy in 2010, it has done much to improve the lives of those living with autism, but we know that there is still much to be done. As hon. Members may be aware, we have recently put in place revised governance arrangements to continue taking forward the strategy. On Monday I had the pleasure of chairing the first annual accountability meeting, where I heard from key stakeholders, self-advocates and partners about the challenges facing autistic adults across England and how we can keep making progress in realising the ambitious autism strategy.

[Mr Sheerman]

Will the Minister give way?

[Caroline Dinenage]

May I make a little bit of progress? I will take questions if I manage to get through this wad of paper.

In reference to a point made by the hon. Members for Huddersfield (Mr Sheerman) and for Cardiff West (Kevin Brennan), there were representatives at that meeting from all the other Government Departments, including the Department for Transport, the Department for Work and Pensions, the Department for Education and the Home Office. The hon. Gentlemen were absolutely right to point out that this subject reaches all Government Departments. It was clear that the complexity of autism and the multifaceted nature of the needs of those on the spectrum pose particularly challenging questions. Frequently this results in regional disparities that are far too wide in autism diagnosis waiting times and in the services someone can access once they have a diagnosis. Some areas are doing well, but others are not, and we need to ensure that good practice is identified and shared across all areas.

Many Members have highlighted particular challenges that autistic children face in school. My hon. Friend the Member for Henley (John Howell) explained exactly why it is important that autistic children are well supported in their education if we are to raise their attainment and improve their life chances. The Government congratulate the all-party group on autism on its report about education in England, which was published in November. It is really important that support for young people with autism is targeted where it will be most effective. The recommendations of that report are being considered by the Department for Education and will be key to its plans. As my hon. Friend said, all teachers are now trained to help children with conditions such as autism as part of their teacher training. Since 2011, we have funded the Autism Education Trust to provide autism awareness training for more than 150,000 education staff—not just headteachers, teachers and teaching assistants, but support staff such as receptionists and dinner ladies, thereby encouraging a whole-school approach to supporting children.

Exclusions were mentioned by a number of Members, including my hon. Friend the Member for Henley, my right hon. Friend the Member for Harlow (Robert Halfon), my hon. Friend the Member for Cleethorpes (Martin Vickers) and the hon. Members for Cardiff West and for Bedford (Mohammad Yasin). We are funding work via the Autism Education Trust to provide advice to parents and professionals on trying to cut down the number of exclusions. We have introduced the biggest reforms to special educational needs and disability support in a generation; introduced education, health and care plans that are tailored to a child’s needs; and given councils £223 million extra funding to help them to introduce these significant reforms.

Diagnosis was mentioned by many hon. Members. Adults and children should not have to face long waiting times for autism diagnosis. We will continue to work with partners to try to address these long waiting times. This is also a key part of the task and finish group that is being led by NHS England. We have included autism indicators in the mental health services dataset, with data beginning to be collected from 1 April this year. This is a real step forward. We need such robust, comparable data to be regularly collected and monitored so that we can be certain of the true extent of the problems not just on waiting times for diagnosis, but on post-diagnostic outcomes. In the Think Autism strategy, we are clear that there should be a pathway to diagnosis, care and support in every local area so that we improve recognition, speed up the process of diagnosis, and meet individuals’ advice and support needs.

I have previously described my hon. Friend the Member for Berwick-upon-Tweed (Mrs Trevelyan) as a force of nature, and today we saw another example of that. She spoke about regional centres of excellence—a fabulous idea—and said that there is nothing wrong with people with autism; they are just different. I had the pleasure of meeting her different and fabulous son James for an evening in Edinburgh last summer. I would hate to be on the receiving end as somebody she encountered in a shop giving her fine young gentleman a hard time.

[Mr Sheerman]

Will the Minister give way before she concludes, as she said she would?

[Caroline Dinenage]

If you will give me a little extra time to complete my remarks, Madam Deputy Speaker, yes.

[Mr Sheerman]

I am grateful to the Minister, who is making an excellent speech. I just wanted to get her to say something about the report we launched yesterday—I know she could not make the event—about people selling harmful interventions to individuals on the autism spectrum. Does she believe that that is a problem?

[Caroline Dinenage]

The hon. Gentleman is absolutely right to raise this; I know that he has done so at Health questions in the past. The Department of Health and Social Care does not in any way condone any of the so-called cures or remedial substances that are being proffered. We do not think that any of them are any good whatsoever.

Last year, NICE’s indicator advisory committee recommended including autism diagnosis in a menu of GP indicators. A review of the quality and outcomes framework is being undertaken by NHS England, and it will conclude later this spring. NHS England has confirmed that the GP autism register will be considered in the context of this work.

We know that there are sometimes issues with the health gap. The hon. Member for Dulwich and West Norwood (Helen Hayes) raised the case of her constituent, Matthew, which shows how horrible things can be when they do go wrong. I will be very happy to meet her to ensure that Matthew’s experience is not in vain.

Many Members raised issues around employment. We know that having a job is not just about earning a living, as it also contributes to people’s wellbeing, gives them a sense of belonging and purpose, and builds self-confidence and self-esteem. Through the Disability Confident scheme, the Department for Work and Pensions is engaging with employers and helping to promote the skills, talents, abilities and value of people with autism. Additionally, Access to Work has a hidden impairment support team that gives advice and guidance to help employers to support employees with conditions such as autism, to offer eligible people an assessment to find out their needs at work, and to help to develop a support plan.

My right hon. Friend the Member for Harlow, the brilliant Chair of the Education Committee, who is passionate about apprenticeships, made a brilliant point about the need for more focus on ensuring that children do not drop off the edge when they leave school. We will certainly take that forward. In December, the DWP published “Improving Lives: The Future of Work, Health and Disability”, which set out how it will deliver on its ambitious plan to help 1 million more people with a range of disabilities into work.

On the civil service becoming an autism-friendly employer, we have committed to support the autism exchange programme, and the civil service is working with Ambitious about Autism to provide work placement opportunities for young people.

On access to democracy, under Representation of the People Acts, polling stations must be as accessible as possible to disabled voters. We recognise that there might be specific challenges, and we will explore with the Electoral Commission what further adjustments can be made.

A few Members talked about the criminal justice system. The Ministry of Justice is working with the Home Office and the Crown Prosecution Service to develop a guide to help officers to identify people with autism. That is now included as part of all police training. NHS England has also issued a revised liaison and diversion specification, which includes autism. To date, eight prisons and young offenders institutions, including Feltham, where the programme started, are part of the criminal justice accreditation scheme, and another 35 are currently looking at the process.

I am really disappointed to hear examples from Members across the House of bad experiences with jobcentre staff, PIP, work capability assessments and so on. All healthcare professionals conducting work capability assessments and other things receive extensive training regarding autism spectrum disorder as part of their new entrant training. All work coaches in jobcentres receive the same training, but I will pass those comments on to the Department for Work and Pensions.

The hon. Member for Bristol West (Thangam Debbonaire) is clearly a true champion for autism in her local area, and I give her massive credit for what she does. She mentioned loneliness. I will be working closely with the Under-Secretary of State for Digital, Culture, Media and Sport, my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch), in developing the cross-Government strategy on loneliness, which is supported by the Prime Minister.

We have heard wonderful examples of great community projects offering fantastic support in different Members’ local areas, and I should give a shout-out to the incredible Marvels and Meltdowns in my constituency—a blatant plug.

The hon. Member for North Ayrshire and Arran (Patricia Gibson) mentioned poor mental health. Obviously that is not an inevitable consequence of autism, but if someone has autism and a mental health problem, it is essential that they can get the appropriate help and support.

The hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) highlighted worrying figures about suicide. We are committed to tackling suicide in every community and for everyone who is at risk, and we updated the national suicide prevention strategy last year to strengthen delivery on key areas.

I want to join the hon. Member for Dewsbury (Paula Sherriff) in paying tribute to the National Autistic Society and its Too Much Information campaign, Autism Alliance, Autistica and various other charities throughout the country that do fantastic work to raise awareness and offer support.

We all want to live in a world and in a country where autism is never a barrier to the opportunity afforded to others. World Autism Awareness Week enables us to continue keeping this issue high on the agenda and in the minds of policy makers, professionals and members of the public alike, which is where it should be.

Question put and agreed to.

Resolved,

That this House notes that World Autism Awareness Week 2018 runs from 26 March to 2 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 the support provided to autistic children in school and to autistic adults in or seeking employment, to reduce waiting times for autism diagnosis, and to promote a public awareness campaign so people can make the changes necessary for the UK to become autism-friendly.