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Asperger Syndrome

1.29 pm

Mrs. Angela Browning (Tiverton and Honiton): I declare a non-remunerated interest: I am a special councillor on the national council of the National Autistic Society.

I believe that this is the first time that the House has considered a debate specifically dedicated to Asperger syndrome. I am aware, of course, that many Members of Parliament have raised individual cases from their constituencies—all too often when a crisis has occurred and an MP's help has been sought.

Asperger syndrome was first described in the 1940s by Hans Asperger, but received little attention in this country until the late 1980s and early 1990s. It is part of the autistic spectrum, affecting some 71 people in 10,000. It is characterised by qualitative impairment in social interaction and restrictive, repetitive and stereotyped patterns of behaviour, interests and activities. There is a serious risk of mental health problems, particularly in the late teens and adulthood. The syndrome is also characterised by autistic behaviour, which can present a challenge and often be misinterpreted as a mental disorder.

What characterises people with Asperger syndrome compared to others with autism is that they usually have good language skills and often have an average or above average IQ. Contrary to the stereotype of a person with autism being withdrawn, a person with Asperger syndrome may talk on and on, regardless of the listener's interest. A two-way conversation may be restricted simply to the giving and receiving of specific pieces of information. Because of their IQ, people with the syndrome can obtain educational qualifications, in some cases at degree level.

Initially, all that may sound rather quirky, but not like a major disability. I initiated the debate to tell Ministers that we now know enough about Asperger syndrome to identify good practice where it exists and to provide services and support. Throughout the country, unfortunately, there is still very much a lottery. People with the syndrome may just happen to live in a part of the country where expertise and support services are available.

The key requirements are recognition of the condition, appropriate support before a crisis occurs, and an understanding by professionals and statutory bodies that they cannot provide services in the short term and then walk away. The situation deteriorates quickly. Perhaps I can put that in context and explain why, as with an iceberg, what you see on the surface belies the depth of the problem underneath.

I shall focus on the over-18s. Education and support at school are important. However, many adults with Asperger syndrome may be well educated but unable to manage cooking or even to seek appropriate help if they have a physical medical condition. It is rare for people with the syndrome to marry. Indeed, I know of none who has. The inability to form social relationships denies them friends and permanent relationships. They are only too aware that they miss out in their teens and adulthood on what they clearly see is normal interaction among their siblings and peer group.

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Equally, the communication impairment affects people's position in the workplace, if they are fortunate enough to have a job. Many suffer bullying at school, which affects their self-esteem and often stays with them for the rest of their lives. Inappropriate behaviour, which is often a normal autistic response, is frequently seen by other adults as intimidating. At worst, mental health professionals misdiagnose it.

It is not uncommon for adults with Asperger syndrome to be sectioned under the Mental Health Act or prescribed drugs, because their autistic behaviour is not recognised as such but is misdiagnosed as a mental health problem. That is not to disregard the fact that mental health problems occur, and one does not have to be a psychiatrist to understand why. Factors include growing into adulthood with no friends, having no social life while peer groups go through the usual growing up periods such as going out at weekends, never forming personal relationships that lead to marriage, poor job opportunities and, for some, being denied the opportunity to drive a car because they have difficulty in anticipating dangerous situations, which means that they are obviously not allowed to hold a driving licence. All those issues come together in young people who have average or above average IQs and who are desperate to be part of life. Their daily battle denies them what we take for granted. It is no wonder that depression is common, that mental health problems develop on top of autism and that the suicide rate is high.

A report published earlier this year by the National Autistic Society found an 8 per cent. suicide or attempted suicide rate among a group that it surveyed. The Government are interested in reducing suicide rates across the board. It would be helpful if we could identify how many suicides, especially those involving young men, are autism based. It is tragic when somebody contemplates, attempts or commits suicide, but we know that there are circumstances in which people do so as a cry for help because they have reached rock bottom. People with autism do not think like that. Cause and effect is not part of their thinking. When a person with autism decides to take their life it is not because they hope that somebody will come and rescue them; it is because they have had enough of life. I hope that the Department of Health will consider the shocking figures for suicide attempts and suicides with the help of a group of people who are aware of the difference between those with Asperger syndrome and those around them.

The situation does not have to be this bad. If appropriate services are provided and support is sustained, many people with Asperger syndrome can have a vastly improved quality of life and can be supported to live with a degree of independence. Unfortunately, tapping into such services is crisis-driven. It is a postcode lottery whether services are available locally or a great distance away. All too often, elderly carers look after an adult child, and getting to the point where a crisis becomes serious enough to warrant consideration of a package of care places a huge burden not only on the person with Asperger syndrome, but on carers and those who take immediate responsibility.

I have not called this debate because I want to raise awareness of Asperger syndrome. There is greater awareness of Asperger syndrome than there was 10 years ago, which is good, but we have reached a stage

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where I am looking for action, which is why I have asked hon. Members to consider the matter today. I welcome bringing together health and social services because communication between the various agencies is important in identifying appropriate support packages. All too often social services departments have to find packages of support in a crisis, which means that such packages are necessarily expensive. That puts health and social services off Asperger syndrome. They are terrified whenever they see that there is another case of Asperger syndrome or autism to consider, because they know it will cost them a great deal of money. It costs tens of thousands of pounds a year to support somebody who presents in crisis.

If social services departments were to take advice from those who specialise in the condition to set up a strategy to support adults with Asperger syndrome, they would find that lurching from crisis to crisis is not the only option. There are ways of supporting people and improving their quality of life. However, input is needed before the crisis occurs. I am sure that the economics of that, notwithstanding the humanitarian benefits, would prove to be more beneficial to the statutory bodies.

The Government recently published a strategy for learning disabilities entitled "Valuing People: A New Strategy for Learning Disability for the 21st Century", and I flag up some concerns about the document. Over a year ago—before the report was published—I corresponded with the Minister of State, Department of Health. He assured me that the Government had started to develop a national strategy for learning disabilities, and that matters relating to autism and learning disabilities among those with an IQ of more than 70 would be considered. However, I am worried by what I read in the document.

Section 8.42 of the document states:

The section specifically addresses autism and recognises that person-centred planning should make it possible for individuals to exercise choice about the provision of their housing and support. However, section 1.6 of the document states that the definition of a learning disability

I do not disagree with that. However, the report continues:

That is discrimination, and I say that as somebody who willingly sat on the Committee on the Bill that set up the Disability Rights Commission.

I ask the Minister to examine the document seriously because it singles out people with Asperger syndrome who are, apparently, not to share in the document's aims

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of dealing with the problems and challenges of learning disabilities. I ask the Government to issue clear guidelines to social services and those involved in health, mental health and education as a matter of urgency to ensure that the statutory services do not deny people with Asperger syndrome their rights purely because they have an IQ of over 70.

I shall put life for a person with Asperger syndrome in context by referring to a report by the National Autistic Society, which was published earlier this year for autism awareness week. In a survey, the NAS identified that only 12 per cent. of such people are in full-time paid employment. Many do nothing but help around the house. Late diagnosis is an on-going problem: 46 per cent. of people did not receive a diagnosis until after the age of 16. There is on-going confusion between the statutory agencies about which has responsibility for funding because, all too often, the responsibility falls between the various agencies. When mental health agencies take responsibility, people are ineligible for help because of their IQ, until they suffer a breakdown in their mental health.

It is difficult to know which statutory agency to approach for help for an individual with Asperger syndrome. I receive a huge amount of post from all over the country about the subject, and can comment about a young man who suffered a severe mental breakdown. The mental health service responded, "Sorry, we can't do anything for him; he has GCSEs." If a person with Asperger syndrome has GCSEs, it does not mean, that they are necessarily a person whom the statutory services should ignore or deny appropriate services to.

I want the Government to recognise what the NAS has concluded: that people with Asperger syndrome are marginalised and excluded. Sufferers carry no white stick, and on a good day, one would wonder whether they had a problem at all. Those who suffer from Asperger syndrome are discriminated against because they have a life-long disability, but are also intelligent. Since when has IQ prevented the recognition of a disability? Do we not recognise those who have no sight but are intelligent? Do we discount wheelchair users who have an IQ of more than 70? Of course not, but that is what happens to those who suffer from Asperger syndrome. It is time to rectify a gross injustice against some of the most vulnerable and socially excluded people in society.

1.45 pm

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears ): I congratulate the hon. Member for Tiverton and Honiton (Mrs. Browning) on securing a debate on such an important subject, and for presenting it so passionately. She has a tremendous personal commitment to the issue. Today's debate ought to raise the profile of Asperger syndrome across the piece, and I congratulate her on that.

Asperger syndrome is a complex and distressing condition, and the Government are conscious that services must be responsive to sufferers' needs. I sympathise with those who care for family members affected by Asperger syndrome. Caring for someone with any disorder from the spectrum of autisms is a life-long commitment that continues even when the person lives away from the family home. Carers make a vital

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contribution to the lives of those with autism, often providing most of the support that the sufferer needs. The Government's determination to improve support for carers—particularly in such fields—is made clear in the report, "Caring about Carers: A national strategy for carers", which sets out our approach.

Asperger syndrome is a form of autism characterised by abnormalities of reciprocal interaction. The hon. Lady explained it graphically, and in more human language, when she described the difficulty that sufferers have in gaining social skills and learning to respond to others in ways that we might take for granted. It is also characterised by a restricted, stereotyped and repetitive repertoire of activities, although language and cognitive development are not delayed. Many sufferers, as the hon. Lady said, are highly intelligent. That is why it was difficult to identify the syndrome for many years; there was little evidence of how prevalent it was.

A report commissioned by the Department of Health from Dr. Tony Holland of Cambridge university suggests that one in 350 people have Asperger syndrome. In that case, there would be approximately 140,000 sufferers in England. It is not clear why there has been such an increase in the number of sufferers in recent years, but I think that that is partly due to improvements in diagnosis in the past 30 or 40 years.

Asperger syndrome has received much media attention recently, and rightly so. I must compliment the NAS for raising the syndrome's profile. I also thank the all-party autism group, which has raised the issue with the Department of Health, the Department for Education and Skills and the Department for Work and Pensions. The all-party group has been active across the piece to make sure that the Government are aware of the issue.

We recognise that some, like the hon. Lady, are disappointed that "Valuing People: A New Strategy for Learning Disability for the 21st Century", the White Paper on learning disabilities published in March, only deals with adults with autism who also have a learning disability. The White Paper focuses primarily on those with learning disabilities, many of whom also have autism. That is not to say that we are not doing anything for those with Asperger syndrome, which is a higher functioning autism. "Valuing People" brings together health, social care and educational agencies, and helps us to improve opportunities and services for people from across the autistic spectrum.

I want to make it clear that "Valuing People" does not preclude those with Asperger syndrome from benefiting from learning disabilities services if that is the best way of meeting their needs in their local community. We made that point prominently in the guidance that was issued on 31 August. Representations from the National Autistic Society caused us to issue that guidance, in which we stated explicitly that people with Asperger syndrome may require an assessment of their social functioning and social skills in order to establish their level of need. It is the most explicit statement on the importance of caring for people with Asperger syndrome that has ever been included in departmental guidance. I recognise that the hon. Lady is impatient for action and wants to see much more done. It is to her credit, and to the credit of others acting on this issue,

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that, for the first time, there is such explicit recognition in the departmental guidance, on which I am sure she will want to build in the coming months.

Diagnosis is an important first step for those with autism. The hon. Lady has made some important points about the effectiveness of early intervention when early diagnosis is made. It is clear from the report of the National Autistic Society that early interventions—whether in education, social skills or opportunities for employment—were much more effective than waiting until the syndrome had been diagnosed at a later age.

One of our top priorities must be to raise the awareness of the syndrome among professionals in primary care and in all services. Raising awareness was the reason for the commissioning of Tony Holland's report. It has now been shared with a wide range of interested bodies including nursing, paediatrics and child health bodies, the Royal College of Psychiatrists, the British Psychological Society and the National Autistic Society. Dr. Holland has taken account of their comments, and copies of the final report are now available from the university of Cambridge. Dr. Holland's recommendations relate to a wide range of issues: the need for professional groups to develop their awareness of Asperger syndrome; the roles of health, social and other services to work together; and the need for population-based studies in both children and adults to try to establish the prevalence and range of disabilities in people who meet the criteria for this condition.

I acknowledge the hon. Lady's remark that we already have the research on prevalence and that what we need now is action. It is right, however, that we continue to gather and refine as much information as we can to support the action that we want to take. That is why we have tried to improve the information on prevalence, and on 5 March 2001 we commissioned the Medical Research Council to undertake a detailed review of the current state of knowledge about autism and to suggest possible areas for further research. The review panel is being chaired by Professor Eve Johnstone, who is an eminent psychiatrist at the university of Edinburgh and chair of the Medical Research Council's neurosciences and mental health board.

The aim of that research is to get a clear and comprehensive picture of what is currently known about the incidence, prevalence and causes of autism and the strength of the evidence that underpins that knowledge. That research will be crucial in helping us to develop further projects that will enable us to tackle the problems faced by people with the syndrome.

The Medical Research Council's review group will consider current knowledge about those with Asperger syndrome to identify gaps and to examine possible areas for developing that knowledge. It is actively involving lay persons' understanding and experience of autism, as well as that of recognised experts, which is a real move forward. It is not merely looking to the scientific community, but is talking to carers and families about their experience of the syndrome. The report's time scale is challenging: it is supposed to report by the end of November. I understand that it is still on track to do so, and I am sure that the hon. Lady will take a close interest in its recommendations.

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There is also an independent national initiative on autism, chaired by Professor Le Couteur. The Department of Health and the Department for Education and Skills are both represented on that body and are taking a keen interest in its recommendations. In addition to the research, it is important that we take action throughout health and social services, and that we try to give people access to employment opportunities. As part of our welfare-to-work strategy, local authorities have just produced the first of three annual joint investment plans on welfare-to-work for disabled people. The hon. Lady explained clearly the difficulties that people with the syndrome have in accessing employment. We hope that the welfare-to-work plans for disabled people can provide specific help and assistance for people with the syndrome who want to work, stay in work or move closer to the world of work through a transition process. There is also quality protects, a huge new five-year programme that is underpinned by £450 million of funding, as well as £60 million for spending on services for disabled children and their families that has been specifically ring-fenced from the children's grant.

An extra £85 million is going into child and adolescent mental health services. As the hon. Lady said, many people with the syndrome also suffer from mental health problems as a result of exclusion and isolation due to the lack of relationships that they experience in their lives. Therefore improving mental health services has to be a top priority. It is also important to help people to improve their social skills so that they can begin to make relationships.

Mrs. Browning : Something as basic as a befriending scheme, which does not cost very much, is simple yet very effective. It is true that people with Asperger syndrome can improve their social skills. However, I think it would be rather over-optimistic to think that their social skills would improve to the extent that they were able to form relationships with other people. I am not aware of any sort of support that would go that far, but there are simple low-cost types of support like befriending schemes. Just to be able to go out for a drink once a week with someone of one's own age can make a world of difference between total isolation and taking a course that teaches systematic social skills.

Ms Blears : The hon. Lady is right. I have some experience of incredibly successful befriending schemes,

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from which the person being befriended and the befriender can gain equally. They find such schemes a really worthwhile and enjoyable experience; simple things like going out for a drink, going bowling and the other activities that everybody else takes for granted are vital. Social services at a local level already provide those schemes in many areas, but trying to provide extra funding for support for young people through the quality protects programme can go a long way to putting in place simple, effective services.

A balance is needed between getting the science right—doing the research on incidence, prevalence and filling in the gaps in our knowledge—and the practical things that we can do to help people in the community, as well as their families and carers, who bear much of the responsibility for looking after people. I assure the hon. Lady that the Government are keen to take action on both fronts. We want to establish the science and get a base of proper evidence. We do not mean to use that to delay action but to take action now, where we can, so that in the future, properly informed by research, our projects can be even more effective in supporting this group of people who are desperately in need.

The hon. Lady raised an important point about the number of suicides among young men. There is a higher incidence of suicide among young men in the population generally, often connected with depression, lack of self-esteem, lack of self-confidence, and a feeling that they do not have a role in the world. We should consider some of the real issues behind those statistics to see whether there is a link. We must not simply take the bald statistics but look at the issues that give rise to people becoming so desperate and so much in despair that they would take a decision of such tragic proportions.

The Government are determined that services for everyone with autism, including those with the Asperger syndrome, should continue to improve. We are sure that they will be among the many groups that will benefit from the positive action that is already taking place. In conclusion, the hon. Lady and others like her have done a great service to people with autism, and Asperger syndrome in particular, in moving the issue up the Government's agenda. It is not an issue that is going to go away. We hope to work with partners, including the National Autistic Society, to develop first class services and make sure that this group of people are treated with equity, respect and dignity.

Question put and agreed to.

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