Autism

Robert Buckland Excerpts

Tuesday 20th November 2012 Commons Chamber

[Mr Robert Buckland (South Swindon) (Con)]

I beg to move,

That this House has considered the matter of autism.

This is a wide-ranging topic for debate, but deliberately so. I hope that we will have time to discuss the varying aspects of this lifelong condition in relation both to children and young people and, of course, to adults.

As is now widely known, the term “autism” covers a range of conditions on the autism spectrum, including Asperger’s syndrome, with a hard “g,” if you please. In this, the 50th anniversary year of the creation of the National Autistic Society, which is now part of a thriving group of organisations and campaigning bodies, today offers an opportunity not merely to look back at the progress that has been made, but, most importantly, to look forward to improvements to the way in which we diagnose, educate and support people with autism.

I believe that I am correct in saying that this is the first time, apart from a 10-minute rule Bill that I introduced last year, that a specific debate on autism has been held on the Floor of the House during this Parliament. The last time that the issue was debated here was during the passage of what is now the Autism Act 2009. It is my pleasure to pay warm tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for her redoubtable stewardship of a private Member’s Bill that, after initial opposition from the then Government, made its way, in amended form, on to the statute book. It required the Government to create an adult autism strategy and to set out guidelines for local authorities and health bodies in England to support adults with autism.

[Mr Lee Scott (Ilford North) (Con)]

Does my hon. Friend agree that we should go down the route of finding work for young people who have autism, Asperger’s or any other special need and getting them into full-time employment when they finish formal education?

[Mr Buckland]

I am grateful to my hon. Friend for that intervention. I pay tribute to the work that he does in his constituency of Ilford North, through a joint initiative with local businesses, to obtain sponsorship and support to help young adults and adults with Asperger’s or autism into the workplace. We need to send out the message loud and clear that, far from looking at people with autism as a problem, we should be celebrating the great gifts that they have and their potential to be constructive members of the workplace.

[Andy Burnham (Leigh) (Lab)]

I am grateful to the hon. Gentleman for giving way. I want to ensure that I did not misinterpret him when I heard him imply that the previous Government were forced to do something. There was a debate about the Bill promoted by the right hon. Member for Chesham and Amersham (Mrs Gillan), but in the end she persuaded the Government and we brought forward the first autism strategy. That has led to improvements on the ground. It is important to say that this has been a cross-party drive, and it is much-needed because there are huge gaps for children and adults with autism. I just want to be clear at the beginning that the right hon. Lady’s drive had full Labour party and cross-party support.

[Mr Buckland]

I want to ensure that today’s debate takes place in that cross-party spirit. Members from all parts of the House warmly supported the provisions of the 2009 Act. I appreciate that Governments have conflicting priorities and pressures on their time. It was through the support of all parts of the House that that private Member’s Bill became law. There is a common purpose in the Chamber today, in relation to both the progress that has been made and our aspirations for our constituents who have autism and their families.

[Huw Irranca-Davies (Ogmore) (Lab)]

I thank the hon. Gentleman and others for securing this debate. Will he note that in Wales, the levels of employment among people with autism are worse, with 7% of those with autism being in full-time employment and a further 6% being in part-time employment? This House should join together in congratulating the Welsh Assembly Government, who have recently appointed an autism employment ambassador to champion the cause of those with autism in employment. That might be something that this Government would like to consider as well.

[Mr Buckland]

I am grateful to the hon. Gentleman. It is concerning to hear that the figures in Wales are dramatically lower than those in England. Clearly, the Welsh Assembly Government have to take their own course. Anything that is designed to promote the interests of young adults and adults with autism and their route into work has to be welcomed. It is early days and I very much hope that we will see a dramatic improvement in those concerning statistics.

[Stephen Metcalfe (South Basildon and East Thurrock) (Con)]

Does my hon. Friend agree that one way to improve the employment situation for people on the autism spectrum, whether in Wales or here in England, is to create greater understanding among adults and among people’s peers at an earlier age? Will he therefore join me in supporting the Anderson Foundation schools challenge, which aims to improve awareness in schools? Will he encourage colleagues to get involved in that and to encourage schools in their constituencies to sign up to it in order to raise and widen awareness of what the condition means to those who suffer from it?

[Mr Buckland]

I welcome my hon. Friend’s intervention. I am, of course, happy to support the Anderson Foundation schools challenge. It is already yielding fruit. Special schools in my constituency are taking part. It seems to be a constructive and practical way not only to raise awareness of autism among the general public, but to engage children and young people with the condition in actively doing things that emphasise the positive aspects of life with autism.

[Mark Pritchard (The Wrekin) (Con)]

I congratulate my hon. Friend on securing this debate; he is generous in allowing interventions. Does he agree that although councils, local education authorities and primary care trusts or their successors mostly do a good job, they need to co-ordinate their activities a little more and work closely together to ensure that people with autism—especially teenagers who have autism and physical disabilities—and their parents and families, get all the support they need?

[Mr Buckland]

My hon. Friend touches on a number of themes that I will develop in my speech, but his point about the complexity of conditions with which people present to the authorities is important and does not affect only autism. Often, complex physical and other conditions will present with autism, and I cannot emphasise enough the need for joined-up commissioning and thinking.

I was talking about the adult autism strategy, which is due to be reviewed by the Government next year. It focuses on improved training, the development of local autism schemes, and a better way to plan and commission services for people with autism. Importantly, it emphasises the involvement of service users and their families—that perhaps sounds a bit trite, but it is often overlooked when services are developed. Services will be unhelpful if they are not developed with the full involvement and consent of those who use them.

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

The hon. Gentleman is making a very constructive speech. When considering these problems as a whole, does he agree that more focus should be placed on the role of carers than has been the case so far? The National Autistic Society pointed out that only one in five carers has had the assessment involving local authorities to which they are entitled by law. Does the hon. Gentleman agree that we must change that?

[Mr Buckland]

I pay tribute to the right hon. Gentleman’s tireless efforts for people with disabilities, including autism, over many years. He is right to say that we overlook the role of carers at our peril and we must all face up to and address the amount of work that carers do and the pressure they are put under, as well as the lack of support they have had to get used to. Comments about joined-up thinking immediately make me consider the role of carers, and when developing health and social care legislation we must remember that not only care for elderly people but lifetime care for people with disabilities cannot be overlooked.

I was talking about the review of the adult autism strategy and my message to the Department of Health, and the Minister responsible for that review, is that we must ensure the National Audit Office report that was published earlier this summer is fully addressed. Although that report noted encouraging progress in many areas of the adult autism strategy, it stated that much more needs to be done to improve access to diagnostic services, personal budgets and social care assessments for people with autism.

Let me set out some facts for the House. More than half a million people in this country have autism—about one in 100. If we include the families and carers of people with autism, more than 2 million people will be affected in some way. That is about 3,000 people in an average parliamentary constituency, according to studies by the Information Centre for Health and Social Care. As the parent of a child on the autism spectrum—like some other Members of this House—I am firmly in that category.

Perhaps I should pause a moment to share with the House some of my experiences as a parent that have driven me to do everything I can, while I have the honour of being a Member of this place, to campaign for the interests of people with autism. It took quite a while for us, as parents, to acknowledge that things were not quite as we had expected with our child. People go through denial, guilt, anger and shame. However, we went through the difficult process with a firm realisation that we would do everything we could for our child. Like millions of other parents, I have been through that mill and come out on the other side, but I am left with the feeling that the system does not work. We are still very much obsessed with process and not outcome, and we seemingly encourage the creation of categories to fit children into rather than the other way around. Until we nail that problem, I am not sure that any of the changes we make, however well intentioned, will bring real change.

Having said that, I remain an eternal optimist about our public services. I pay warm tribute to the legions of teachers, teaching assistants, speech and language therapists, health professionals, child psychologists and all the other people in the special needs field who work so hard day in, day out to help and support people who need their services. We are lucky in this country to have such a dedicated range of professionals.

An estimated 88,000 school-age children have autism in England alone—that is about 1% of the total school population. Autistic children form the largest group of children in receipt of statements of special educational needs. The proposals in the children and families Bill will therefore affect them significantly.

[Stephen Metcalfe]

Is that 1% increasing or decreasing? My understanding is that, with better diagnosis and better understanding of who fits on the spectrum, the number is increasing. It is therefore vital that we get those services right.

[Mr Buckland]

My local experience, which I am sure is shared by many hon. Members, is that the rate of diagnosis is increasing. Some years ago, when my daughter was diagnosed, I was startled to learn that, in certain parts of the country, there were no diagnoses of girls with autism. That was not because there were no girls with autism, but because the specialisations needed to make the diagnosis were not there. I am afraid that that patchiness applies today. We are at the early stages of fully identifying the range of needs. I accept that, at times, diagnoses are made in the wrong category and that children with other conditions are diagnosed as autistic, but that is inevitable when the system seeks to ensure that the needs of children are addressed in an increasingly sophisticated way.

I mentioned the need for parliamentarians and society to start viewing people with autism as people with huge potential. In a few years’ time, I want to stand here in the Chamber—or anywhere—and say that, in this country, we have cracked the code and ensured genuine opportunity for all people with autism and autism spectrum conditions.

[Steve Brine (Winchester) (Con)]

I congratulate my hon. Friend on securing this debate—he does such good work in this field. He has spoken very eloquently of his experiences as a parent. I have lost count of the number of parents who come to my surgery with an enormous folder after working so hard on behalf of their child. They are the ones with the sharp elbows, the time and the wherewithal to do all the reading and understanding, and to battle their child through the system. This debate is about the millions of children in this country who do not have such parental support, such as children in care, getting the same access to services as children whose parents can drive their way through the system.

[Mr Buckland]

I am grateful to my hon. Friend. I am reminded of the famous quotation from F. E. Smith about the world offering glittering prizes to those with stout hearts and sharp swords—I think “sharp elbows” was the phrase my hon. Friend used. He is absolutely right. We need to move to a system where parents do not need to shout at the top of their voice to obtain provision for their child, or bang on the nearest door as loudly as possible or kick out at the authorities to get what they believe is in the best interests of their child. He is absolutely right about that.

[Pat Glass (North West Durham) (Lab)]

Is it not a sad indictment that, in my experience and the experience of many who work in this field, our behavioural schools are packed full of children from families that do not have sharp elbows? Those children are labelled behavioural, whereas children from families that have the ability to get a diagnosis are labelled autistic.

[Mr Buckland]

The hon. Lady has great experience in this field and it has been a pleasure to work with her since we entered Parliament together. She is right. The category of behavioural difficulty is so often used as a repository for children who, in another context, would be treated differently. That is why, when it comes to diagnosis and identification of need, we have to do it better. We have to get better and better to ensure that children are in the right stream, the right school and the right environment. My worry—I know that she shares it—is that in labelling too many children in a behavioural category, we end up with children side by side in an inappropriate environment and in an unsuitable way that can be damaging to the child. I am grateful for her intervention.

[Andy Burnham]

The hon. Gentleman is making a powerful speech. I just want to say that I am sorry that I cannot stay much longer, but I wanted to be here to show my support for what he has said.

Following on from the previous intervention, does the hon. Gentleman agree that there is a role for educating health service practitioners to understand the early signs of autism, particularly Asperger’s? Is he as shocked as I am to hear of cases in my constituency of people being diagnosed with Asperger’s in their 50s, 60s, and even in their 70s? As my hon. Friend the Member for North West Durham (Pat Glass) said, that is an indictment of a system that is not working at the moment.

[Mr Buckland]

I am grateful to the right hon. Gentleman. Like him, I know of many cases of people who have been diagnosed in late middle age. What a missed opportunity for those individuals. That is not just a waste for them, but a waste of resources when it comes to how Government agencies plan provision for autism and related conditions.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I join in congratulating my hon. Friend on securing the debate. The right hon. Member for Leigh (Andy Burnham) is absolutely right to raise the issue of the definition of autism. Regarding the explanatory notes to the Autism Act, it is important to remember that part of the intention of the review process of the autism strategy was to deal with the definitional issue and keep it under continual review so that we could respond more quickly to new developments than if the definition was included in primary legislation. I hope my hon. Friend will support me in ensuring that the Government visit and revisit this, so that the issue raised by the hon. Member for North West Durham (Pat Glass) is considered seriously, and that we move on.

[Mr Buckland]

I am grateful to my right hon. Friend. We should all acknowledge that with increasing expertise and medical evidence the definitions will change and the way we approach autism will alter. Therefore, a statutory instrument is a more flexible mechanism than having to use parliamentary time to deal with all the concomitant difficulties involved in enshrining definitions in primary legislation. Superficially attractive though that often is, it can be a disadvantage to those with the condition.

[Mark Lazarowicz (Edinburgh North and Leith) (Lab/Co-op)]

I thank the hon. Gentleman for giving way—he is being very generous with his time—and I congratulate him on securing this debate.

Moving away from the Autism Act but on to the subject of people diagnosed with autism at a later stage, one issue that comes up is access to benefits and people’s encounters with the benefits system. I would be interested to hear the hon. Gentleman’s thoughts on how that aspect of provision could be improved to reflect the needs of people with autism, particularly older people whose condition has been recognised late.

[Mr Buckland]

rose—

[Mr Speaker]

Order. Just before that intervention is answered by the hon. Member for South Swindon (Mr Buckland), to whom I always listen with huge interest and respect, I know that he will not mind if I point out to him and the House that nine Back Benchers and a couple of Front Benchers are still to contribute. I am keen to accommodate as many people as possible, consistent with hearing the continuation and conclusion of his excellent speech.

[Mr Buckland]

I can assure you, Mr Speaker, that I am watching the clock anxiously, and I will now make progress. I am grateful to hon. Members for their interventions.

The hon. Member for Edinburgh North and Leith (Mark Lazarowicz) is right about the problem he illustrated: diagnosis is one thing but provision for older people with autism is another. Many older people to whom I speak tell me that, having had the diagnosis, they turn around and say, “Well, what now?” Very little happens after a diagnosis. Other speakers will deal with the point about assessment for benefits, but the message has to go out loud and clear that more training must be given to those responsible for conducting benefit assessments, so that what I call invisible conditions, such as autism, are fully understood by those conducting the assessments. I am sure that he, like me, will have had cases where that invisible condition was not recognised.

I am grateful that the Under-Secretary of State for Education, my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), who has responsibility for the draft Children and Families Bill, is in his place. I want to highlight a report prepared last year by the all-party group on autism, which I have the honour of chairing. I know that he has been listening carefully to the points and recommendations made in the report, and I welcome his approach in listening to the points made and already making changes to some of the provisions in the Bill—for example, the inclusion of apprenticeships as part of the future education, health and social care plans. I approach my remarks today in that spirit of engagement and listening.

I mentioned the all-party group’s report. Our inquiry included an online survey in which nearly 1,000 respondents took part. It is, I believe, an authoritative and useful source of information when it comes to the development of policy. Among other things, we recommended that local authorities establish local training needs for special needs and identify where specialist autism knowledge is available to local schools. The funding for specialist training programmes for teachers has to be an important part of that, and we look to the Government for their continued support.

We were concerned about the exclusion of children and young people with autism. They often result, sadly, in lives that turn into criminal justice issues, huge wasted opportunities and expensive mistakes that cost our country dear. We are concerned that schools with a high number of exclusions, permanent or fixed-term, should not be graded as outstanding or good in terms of behaviour, because we regard exclusions as a badge of failure. I say that with respect to all the professionals involved. I understand that it is often difficult to manage young people with autism and other conditions, but exclusions are not the way to deal with the problem. All they do is push the problem on to another agency. It is the equivalent of kicking the can down the road. That is a phrase we often here in this place, but it is what is happening to young people with these conditions far too often.

The all-party group also emphasised that the new system should ensure that all children with autism, whether they have a statement or not, have access to the necessary support, and that there be a lead teacher for autism in every school. We must not forget that children currently in receipt of help under the school action or school action plus schemes might not have needs that are acute enough to merit a statement or an education, health and social care plan, but their needs will remain none the less. I would be interested to hear the Minister’s observations about children in that category.

[Mr Mark Williams (Ceredigion) (LD)]

Will the hon. Gentleman give way?

[Mr Buckland]

I am afraid I need to press on.

There is also a need for joint commissioning of services, which is something that other contributors have touched on. In Swindon, which I represent, joint commissioning is already happening—we are seeing joined-up thinking, working and action—but in many places there remains a dislocation between health and education. Putting it bluntly, without the proper involvement of local health agencies, these reforms just will not work. The role of health and wellbeing boards, which were set up under recent health legislation, will be pivotal in ensuring proper joint working. I therefore urge my hon. Friend to do all he can as an Education Minister to ensure that other arms of government are doing all they can to ensure that education, health and social care plans knit together and provide a continuum of care.

I wanted to talk about accountability; very briefly, I will say this. Unless parents and carers feel that there are proper lines of accountability in decisions about their children, the system will not get the confidence it needs. Therefore, a proper and effective complaints system, encompassing all state-funded schools, must be put in place. I accept that school governors and Ofsted will have a role to play in the process, but personal action plans—agreements that will provide objective measurements of progress for parents to measure their schools against—are essential. This is not about bureaucracy for the sake of it; it is simply about ensuring that we can harness the earnest energy of parents to ensure the system works as best it can.

I welcome the proposals for local offers on SEN. I accept that local agencies will need to develop their own services, but I caution the Government in this respect. A national framework within which local offers can be developed will be necessary. The analogy I draw is between the system we have in health—where guidelines from the National Institute for Health and Clinical Excellence provide a framework within which local commissioners can develop services—and a system that I believe could work well in education. Such a system would ensure that parents and carers knew there was a basic standard to which the local offer would be made.

We have already touched on the problems and challenges facing young adults with autism going into the world of work. We have heard some depressing statistics in Wales. In England, one in four children with autism obtains some form of education or training after leaving school. That means that three out of every four do not have those opportunities. Some 25% of graduates with autism are unemployed, which is the highest proportion among any disability group. Fewer than one in seven adults with autism are in full-time employment, which is why I am encouraged that the Government are to extend the regime of education, health and social care plans right up to the age of 25. That is vital and acknowledges the fact that many young people with autism develop very much at their own pace—in a way that does not conform to the primary, secondary and tertiary stages of education—and it does so in a way that will allow them to develop and mature into adulthood. However, we do not want to move the cliff edge from 19 to 25. We have to ensure that the transition into adulthood after 25—after the end of the plans—is smooth and planned, and inspires confidence not only among those young adults, but among their families and carers.

The age in which people with these conditions are categorised as needing to be dealt with in a little box in the corner has ended, but we are now in a transitional phase. We have not yet created the systems that will allow the integration of such people into the mainstream of our national, social, economic and political life. I very much hope that today’s debate will, in some small way, be yet another milestone along that important road, so that in the years ahead, we as parliamentarians can say that we did all that we could to ensure that a minority with so much to offer was allowed to play its part at the heart of our life.

--- Later in debate ---

[Mr Timpson]

The legislation we have is in draft form and is undergoing pre-legislative scrutiny. We are listening carefully to all the concerns raised by parents and others to make sure that, as all speakers have said this afternoon, we get it right. Where it is not clear, we are happy to look and to make sure that it is absolutely clear. Of course, with the code of practice and regulation to come, we have the opportunity to set out in more detail how everything will hang together and play out on the ground for parents. I was pleased to hear the hon. Member for Washington and Sunderland West (Mrs Hodgson) say that the Opposition want to play a role in developing that.

[Mr Buckland]

Will my hon. Friend carefully consider the point I made about the need to make sure that the code of practice is enshrined in secondary legislation, so that there can be both certainty and, if and when it needs to change, flexibility, as it will be a living document?

[Mr Timpson]

I understand my hon. Friend’s point. He knows that the current code of practice, because of the parliamentary resolution required, has not been changed since 2001, and that creates anomalies—for example, it refers to agencies, such as the Learning and Skills Council, that no longer exist. To make it a living document, we need to be able to keep it up to date and in the proper form that reflects current practice. I shall consider his point and I am sure that we can take it up as the Bill goes through Parliament.

I was trying to give some impression of the thrust of individual Members’ contributions. I want to address some of the points raised by my right hon. Friend the Member for Chesham and Amersham, particularly in relation to independent special schools and the ability of young people and parents to have a preference in their plan. That was also raised by the hon. Members for Newcastle upon Tyne North (Catherine McKinnell) and for Washington and Sunderland West (Mrs Hodgson). As I told the Education Committee, we are working closely with independent special schools to try to get over the hurdle of the legal difficulties and the definition. We hope to resolve those difficulties, because there is a growing consensus that we should have as much involvement with all the schools that parents might want to send their children to as the most appropriate places for them to be educated and to have the support they need. We are hopeful about resolving that, so I hope that reassures hon. Members that it is something we are working on. As I have said previously, we want to ensure that we get that right and do not end up with something that proves undeliverable, as that would not be in the best interests of the children we are trying to help.

In relation to the adult autism strategy, I again pay tribute to my right hon. Friend the Member for Chesham and Amersham for the work she has done. The review is coming up next year, between March and October, and I want to re-emphasise the importance of a cross-departmental effort to ensure that the strategy develops in as co-ordinated a way as possible across Government and that it is not simply taken up by one or two Departments. I am happy to talk with her about how we can achieve that and ensure that every Department plays its part.

Several Members, including my right hon. Friend, mentioned the work capability assessments and Atos. That is obviously something that has been running for some time. The third independent review of how the assessments are functioning has now been published by Professor Malcolm Harrington. It states that real progress on improving the assessment is

“beginning to change positively in the best interests of the individual”.

There are ongoing concerns, as hon. Members have mentioned, and I will be happy to write to the relevant Minister in the Department for Work and Pensions so that they can consider the points that have been raised. The health professionals recruited by Atos or Capita must demonstrate the appropriate skill in assessing people with conditions affecting mental health and intellectual and cognitive functions, and that includes taking into account their history and observing their ability to perform relevant tasks. That should also include those with autism. I take on board the point that has been raised and am happy to share that with the relevant Minister in the Department for Work and Pensions.