Autism

Tom Clarke Excerpts

Tuesday 20th November 2012 Commons Chamber

[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.

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[Jonathan Reynolds (Stalybridge and Hyde) (Lab/Co-op)]

I thank the hon. Member for South Swindon (Mr Buckland) for securing the debate and for his fine speech. I should also like to say how much I value working with him on the all-party group on autism. For many people watching this debate on television, their usual view of Parliament will be the robust exchanges that they see on a Wednesday at Prime Minister’s questions, and I confess that I play a part in that, as Parliamentary Private Secretary to the Leader of the Opposition. For me, however, Parliament is more about debates such as this, when we come together across geographical and party lines to try to progress an issue of great importance to our constituents. Such debates reveal what this Parliament should be all about.

Like the hon. Gentleman, I have to declare an interest in that I have a son with autism. That explains much of my involvement in the issue and in the work of the all-party group. I would like to pay tribute to the work of the National Autistic Society for its campaigning and for the services that it provides, as well as for providing parents with hope and with help when they need it most. When a parent first becomes aware, perhaps through a teacher or through their own intuition, that their child might have autism, the resources of the National Autistic Society will invariably be the first that they access to learn more about it. The role that the society plays is vital.

I welcome the intentions of the Government, as revealed in their Green Paper. We all want a more joined-up system that is easier for parents to access and that makes it easier for young people with autism to get the support they need. I know that a lot of parents have concerns; I hear them from my own constituents as well as from people who contact me as an officer of the all-party group, and I would like to go into those in some detail. As I understand it, however, the Government’s intentions are good.

At present, it is too much of a fight to get what our children need. Parents always tell me that local authorities are reluctant to give a statement, telling them that they do not need it, that they can have the same support without it, and that it is unnecessary because their child is doing fine. That is wrong. Too often, only those people who are really prepared or equipped to take on the system will get what they need, as the hon. Member for Winchester (Steve Brine) pointed out.

[Mr Tom Clarke]

My hon. Friend is making a very well informed speech. With regard to local authorities, does he agree that there are major gaps? For example, only 9% of people with autism are entered into the system for speech therapy, perhaps because their GP has recommended it. Local authorities ought to be defining these matters much more clearly, and we should encourage them in the debate today to take a proper role in these important issues.

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[Mrs Gillan]

Certainly one way to maximise the potential of people with autism is to follow such examples of good practice. The all-party group might want to address these issues in the future. If we want to be hard-nosed about this subject, we could refer to a National Audit Office report published when the Autism Act 2009 was going through this House, which showed that if local services identified and supported just 4% of adults with high-functioning autism and Asperger’s syndrome, the outlay would become cost-neutral over time, and if they did the same for just 8% of such adults, that could save the Government some £67 million a year.

I worked very closely with the NAS during the passage of the Autism Bill, so I know that it strongly supports the Government’s proposed reforms to the special educational needs system. It especially welcomes the introduction of joint co-operation and commissioning duties, the extension of SEN law to cover academies and free schools, and the education, health and care plans for young people up to the age of 25, which will replace the statements.

The NAS has raised some concerns, however, and it speaks from a position of great strength. It runs seven schools for children with autism, and it is setting up an autism free school—in our area, Mr Speaker, of the Thames valley. The new NAS Anderson school in Bristol works with children to address the challenges they face, with the specific aim of helping them move back into community-based mainstream provision. The NAS knows from experience that these new schools are set up in response to great local need and are anchored in their communities. It is essential that children with complex needs can have access to such independent special schools, but I understand there is some concern that under the new system parents may not be able to express a preference for such schools in an education, health and care plan. I urge the Minister to ensure that such schools can be accessed by those who need them.

This debate has focused on the SEN reforms, but the Autism Act 2009 was borne out of a recognition that the specific needs of adults with autism were often overlooked by service designers at the local level and therefore they consistently missed out and did not get the help they needed. Unfortunately, that is reflected in recent NAS research. Some two-thirds of adults with autism are not getting the help they need.

It is vital that we get education provision right. Local authorities must ensure that they not only educate themselves, but implement the Department of Health adult autism strategy in a way that addresses local needs. In working with young people with autism and their families, local authorities must plan at the strategic level for local services and develop individually tailored plans to ensure that children with autism are supported into adulthood and can enter employment and live independently in our communities.

The adult strategy will be reviewed in 2013. That gives us an important opportunity to consider these matters. It also gives us a chance to celebrate improvements —there have been improvements—but we must not ignore the fact that there is still so much more that we need to do. I particularly urge the Minister to take on board the fact that he needs to work with his colleagues at the Department of Health and the Department for Work and Pensions, and with many others, including Members of this House, to ensure that the proposals to reform SEN are fully linked to the work on the autism strategy.

[Mr Tom Clarke]

I am grateful to the right hon. Lady, who has done so much in this field, for giving way. On that point, does she agree that there is something wrong? We have been reminded that only 15% of people with autism are in full-time jobs and only 6% are in part-time jobs, which represents a loss of talent that is wrong not only for the individual but for society.

[Mrs Gillan]

I am grateful for the intervention and am second to none in my admiration for the right hon. Gentleman, who has given far more to this matter over the years than I could ever hope to. His record speaks for itself.

The right hon. Gentleman is absolutely right. When I was preparing my Bill, I talked to an employer who employed high-functioning adults with autism and Asperger’s. I asked how he coped with having employees with Asperger’s, and he said he really liked it because he could be sure that they would do the same task and make the same check over and over again. Quality control was not needed at all because of the excellence of the work of those individuals. We need to recognise that people with autism can be a great benefit to a business or an industry and they are certainly not a liability or somebody who is just taken on to make up the numbers. The right hon. Gentleman’s intervention was very valuable and I wish that more employers would take on people who are on the spectrum.

Finally, parents and people involved in autism often refer to reaching the transition age as falling off a cliff. In my experience, it was less like the romantic idea of falling off a cliff and more like falling into a dark black hole. The Government must continue the work carried out by the previous Government and ensure that the Department of Health and others make sure that when young people with autism reach adulthood their needs are planned for and met by other services so that the black hole does not simply move to the age of 25, as many people fear it might.

We have come a long way in understanding autism, but we have a long way to go in understanding the spectrum and the challenges it presents to Governments and to individuals and their families. The case of Gary McKinnon brought autism back to the forefront of people’s minds and we must ensure that we do not forget the condition. It has been a Cinderella condition; this is the first debate on the subject in three years. We need to cast more light on it and to ensure that as a Government we gain lasting and positive change for people with autism so that they can achieve their full potential in our society. I very much look forward to hearing the Minister’s response.