§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Mike Hall.]
1.30 am§ Dr. Stephen Ladyman (South Thanet)I apologise to you, Mr. Deputy Speaker, to the Minister of State, Department of Health, my hon. Friend the Member for Barrow and Furness (Mr. Hutton), and to my other parliamentary colleagues for keeping you all here at this time of night. However, having apologised, let me point out that this week is autism awareness week, so it is important to highlight autism and the important issues surrounding the condition. I am therefore delighted to have obtained tonight's Adjournment debate.
I am especially pleased because on Monday evening, in the Jubilee Room off Westminster Hall, we held the public launch of the parliamentary all-party autism group, which I have the honour to chair. My hon. Friend the Minister has already addressed the group, and I am grateful to him for doing so. Its membership, which is still growing, includes more than 130 parliamentarians from all parties and both Houses. The group has received several dozen letters of support from parliamentarians who are not able to join, including members of all the Front-Bench teams and the Prime Minister himself. That is a remarkable display of support for a new specialist parliamentary group.
The group is being generously sponsored by the Shirley Foundation—it is proper to place that support on the record and to acknowledge the generosity of the foundation and its founder, Dame Stephanie Shirley. Also providing support and advice for the group is a team comprising people from the National Autistic Society, the Parents Autism Campaign for Education, leading academics, and other individuals with an interest in autism.
All those parliamentarians and strangers have come together because of their deep conviction that the causes and occurrence of and the support for autism require urgent review, and that such a review will reveal a need for the Government to increase the level of support available to autistic people. For the sake of clarity, let me state that, tonight, I shall use the word "incidence" to indicate the annual occurrence of autism within a given population, and "prevalence" to indicate the total number of autistic people in the population at any one time. "Autism" will be used to refer to the whole spectrum of autistic disorders, including Asperger syndrome.
There is a great deal of anecdotal evidence that the incidence of autism is increasing, and several studies by scientists of repute point to an increase. One such study suggested that, in one region of the United Kingdom, the increase in incidence might be as high as 25 per cent. compounded annually. In passing, I note that, in its 1998-99 annual report, the special educational needs tribunal reported a 360 per cent. increase in hearings related to autism during the preceding four years, making autism the second most common disability with which the tribunal deals.
Some of the perceived increase is, no doubt, because of improved diagnosis or a broader classification of autism. However, in my view and, more significantly, in the view of most of the experts to whom I have spoken, the 307 underlying incidence of autism is increasing and the apparent increase is not just the product of better diagnosis. Some factor is causing the increase. My hon. Friend the Minister will be aware that many parents and even some academics believe that the mumps, measles and rubella vaccine or other vaccines are responsible; most clinicians and scientists disagree.
I have written to several leading academics and some degree of consensus has emerged that an individual's potential to develop autism involves several genes, not one; and that different factors might be at work in establishing that potential. The expression of autism must be triggered in an individual with a predisposition towards it, and several different triggers may be involved.
The condition may arise, therefore, in different people as a result of different mechanisms. At this stage, there are several environmental factors, including the vaccination programme, that cannot be ruled out as factors for at least a subgroup of the population of people who have autism.
Given that complexity and the view in the scientific community, it must surely be the duty of Government to initiate studies that can finally decide the controversy. We need to answer the question, "Is the incidence of autism increasing?" If the answer is yes, we must isolate the factors that are at work.
It must also be the job of Government to ensure that support for autistic people is planned for. To do so, we must know the prevalence of the condition. On 14 January 1999, in a written answer to me, the Minister of State, Department of Health, my hon. Friend the Member for Barrow and Furness (Mr. Hutton), told me that his Department did not collate data in respect of the number of autistic people, but relied on local authorities to do so.
I can tell my hon. Friend that recent inquiries by individuals and voluntary organisations indicate that many local authorities do not collate that data, so we do not know, nationally or locally, how many autistic people there are. How can we plan adequately, when we do not know how many people we are planning for?
Let me summarise. We do not know how many autistic people there are and how many there will be. We cannot therefore be sure whether we as a society are doing something to cause the condition. We do not know whether we could reduce the incidence by doing something differently, by stopping doing something or by starting to do something. We cannot plan adequately for supporting autistic people, as we do not know accurately, locally or nationally, how many people have the condition.
We can make some estimates. A study by Wing and Gould carried out in Camberwell was published in 1979. Another study in Gothenburg by Ehlers and Gillberg was published in 1993. Using those studies, the National Autistic Society estimates that 91 in 10,000 people have conditions on the autistic spectrum.
At the launch of the all-party group on Monday night, Dr. Fiona Scott of Cambridge university announced her recent findings, which are to be published in The Lancet in the next week or two. They indicate that one in 175 children in Cambridgeshire is autistic.
Those are frightening figures. Some people with an interest in the condition have started to speak of an epidemic. The figures must surely concern and may even 308 frighten the Government. The figures suggest that on average, every English and Northern Irish Member of Parliament has more than 800 constituents with an autistic spectrum disorder. Every Scottish or Welsh Member of Parliament must have more than 600 autistic constituents. Accurate figures are needed to plan support and care. The Government should initiate such research urgently.
If those figures alone do not frighten my hon. Friend, let me tell him the recent estimate of the cost of autism. The real cost of autism, we all know, is in heartache, but let us consider the financial implications. The average lifetime cost of supporting an autistic person has been estimated at £2.9 million. That excludes the loss to the economy as a result of autistic people who cannot live independently and earn their own living. The total cost to the economy is about £1 billion a year. Those figures should start appearing on the Chancellor's radar screen, never mind my hon. Friend's in the Department of Health.
If the condition were better understood and causal factors could be reduced, the costs could be reduced. If those who develop the condition receive early diagnosis and intervention, and if they get the right support and the right education package, diet and health care, many will make huge progress and will eventually be able to live independent and productive lives.
§ Mr. Bob Blizzard (Waveney)I am grateful to my hon. Friend for giving way. I agree with him about the importance of early intervention, but on the basis of inquiries that I have made in my area, following a number of case studies brought to me by a couple with an autistic child, I can tell him that early intervention is not taking place in my area because of the difficulty in recruiting specialist staff, the lack of co-ordination between various parts of the health service and between the NHS and the education service, and the failure of one body to take a sufficient lead in promoting early intervention.
§ Dr. LadymanMy hon. Friend is absolutely right. One of my key points is that, without planning and co-ordinated work, there will be cases such as my hon. Friend described in every constituency and every hon. Member will come across constituents in exactly that predicament.
We need good planning. However, without accurate data, it is difficult to ascertain how we can achieve that. Diagnosis and treatment are patchy at best, and regional standards are highly variable. Best world practice should be identified and used throughout the United Kingdom. If diets or nutritional supplements are shown to have benefits, the National Institute for Clinical Excellence should say so, and health authorities should make them available on the national health service.
Educational provision is often poor and inappropriate. People with Asperger syndrome are often very bright but they are treated in the same way as those with profound learning difficulties. Many parents have to fight like tigers to have their children statemented and to find an appropriate school place.
One of my constituents was in a mainstream school until he was bullied. He was transferred to a special school, where he had a violent episode, which was almost certainly the result of the upheaval. He was excluded and is no longer acceptable in any school. He is effectively a prisoner in his own home. That is true not only of him but of his parents because they have to stay at home and look after him.
309 Best practice must be identified and implemented throughout the United Kingdom. I am pleased that the Government have already been involved in setting up a working group to establish and disseminate best practice on education for autistic children. However, there is a long way to go.
Residential provision for school children and autistic adults is often far from family and of variable quality. We must make sure that high quality provision is plentiful and available. Local government has statutory responsibility to provide for the care of autistic people, but the care is often unplanned and of poor quality. If local authorities do not even count the people they care for, how can they plan it adequately?
Regional variations must be ironed out and local authorities called to account. If ever a subject required joined-up Government, it is autism. We desperately need research into incidence and prevalence, followed by joined-up planning of services throughout the UK. The Department of Health, the Department for Education and Employment, local government, voluntary organisations and charities, the Medical Research Council and other research funders, the clinical, academic and scientific communities must be brought together to work on the matter.
Autism is a huge and growing problem. It causes misery, heartache and massive costs. I know from previous meetings with my hon. Friend the Minister that he and the Government recognise and sympathise with the problems. I hope to hear soon that they will act aggressively to deal with some of them. The misery caused by the condition has sometimes brought tears to my eyes. It is difficult enough to experience a parent's pain second hand, but imagine the stress and distress that the families of some autistic people experience as they fight for diagnosis, battle for a statement for their child, struggle for treatment, education and support for a loved one. Sometimes they cannot see the light at the end of the tunnel.
There is no reason why we should not aspire to the best standards in the world: the best practice in diagnosis, the best standard of treatment, the best practice in early intervention, education, support and long-term care.
If I had one wish—I do not expect my hon. Friend to grant it tonight because that is not the way in which Adjournment debates work—it would be for him to tackle prevalence and incidence by initiating the required research for accurate data. He could instruct local authorities to collate their data using a standard diagnostic model and report them to him annually. That quick and cheap fix would at least get us started. With the research councils, he could also plan appropriate studies of incidence and potential causal factors. They would take much longer, but the sooner they start, the sooner they would report.
If I had a second wish, it would be for my hon. Friend to pull the other Departments together, begin a programme to identify best practice in health, education and support for autistic people and consider how and where we could introduce change. Such a project may even be a suitable candidate for Cabinet Office co-ordination as it would cross so many departmental boundaries. If he cannot give such commitments tonight, perhaps he could offer them to me in writing in a few days, after he has discussed the report of the debate with his officials.
310 Those wishes are not unreasonable. I hope that my hon. Friend will grant them to me and, more importantly, to autistic people and their families around the country. The problem is massive and growing. The real cost is heartache and blighted lives. Autism represents an urgent case for action.
§ The Minister of State, Department of Health (Mr. John Hutton)I warmly congratulate my hon. Friend the Member for South Thanet (Dr. Ladyman) on securing a debate on what every Member of the House accepts are important issues. Many Members, including me, have recently met parents of autistic children in their constituencies and heard a familiar litany of concern about the provision and adequacy of services. Let me make it clear that we take these matters very seriously. We are happy to work with others to make progress on a range of issues to improve the services that we provide for autistic people.
Before I respond to some of the specific concerns raised by my hon. Friend, I pay tribute—in autism awareness week—to the valuable work done by the National Autistic Society and other organisations to raise awareness of the needs of children and adults with autistic spectrum conditions. The formation of the new all-party autism group is testimony to their effectiveness in bringing together those with a common interest in improving services for people with autistic spectrum disorder. I look forward to working with the all-party group. Over the years, the Department of Health has given substantial grants to support the National Autistic Society's work and, together with colleagues in the Department for Education and Employment, officials continue to engage in dialogue over the full range of concerns. That will continue.
We are all aware that the number of children identified as having autism is increasing. My hon. Friend reminded us of that, although the full explanation is not clear. It may be due, at least in part, to welcome improvements in diagnosis and to changes in the way in which autistic spectrum disorder is identified. I acknowledge that autism is a matter of increasing concern in this country and abroad. There have been considerable increases in awareness and our knowledge and understanding continue to grow, so we need to ensure that policy is properly re-evaluated in the light of the latest evidence.
As my hon. Friend said, estimates of the prevalence of autistic spectrum disorder vary. That is partly due to variations in definition, although most people seem to agree that the prevalence of classic autism is four to five cases per 10,000 of the population. The prevalence of Asperger syndrome is less certain. A recent estimate given to the Department is that it appears to affect 29 children in every 10,000. The prevalence of all autistic spectrum disorders is more difficult to estimate, but, as he informed us, it could be as high as 91 per cases per 10,000.
The Department has recently been in dialogue with the National Autistic Society over prevalence—about which my hon. Friend, like me, is substantially concerned—and we look forward to the meeting of experts, which will discuss that issue and which we understand the society will convene in the near future. We shall consider what further action we should take in the light of the meeting. We recognise that we need to know more about the 311 prevalence of autism and any changes in prevalence. This is a complex issue, as he rightly said, and we need to work together to identify the best way forward.
Establishing the cause of autism will help to prevent, identify and treat that distressing condition. My hon. Friend will be interested to know that, last month, the Medical Research Council, which is funded by the Government, announced that it has provided £344,000 to fund one of the largest autism studies ever attempted.
The two-year study, to be led by Professor Andrew Hall of the London School of Hygiene and Tropical Medicine, will attempt to find out what causes the condition. The researchers will study whether autistic children have a history of other conditions or medical problems, such as problems during birth. They will look at whether viral infections in the womb or soon after birth appear to play a role in producing autism. By examining a representative sample of health records drawn from more than 2 million people registered with 300 general practices across the UK, the researchers will also be able to examine any possible association between autism and the MMR vaccine. That substantial piece of research will, I hope, constitute a landmark that will help us to understand autism better.
Experts agree that treatment for autistic children should preferably be begun early. My hon. Friend made that point. The Government recognise the importance of collaboration between health, social services and education agencies to facilitate early identification and effective intervention, and we are acting in a number of key areas to ensure such facilitation. We have launched the quality protects programme, involving investment of £375 million to improve services radically for children in need. The programme is developing and supporting partnerships between local authorities, health services and the voluntary sector. My hon. Friend called for all those things. It is also improving assessment, care planning, record keeping and quality assurance systems. Children with autism will be among those benefiting from this major new investment.
The Government are also investing £452 million in sure start, which involves 250 local programmes in deprived areas for families with a child under four. Two of the key programme objectives are to improve children's social and emotional development by providing early identification of, and support for, children with emotional and behavioural difficulties, and to improve children's ability to learn—for example, through early identification and support of children with learning difficulties.
The Government have also increased investment in child and adolescent mental health services by £90 million between 1999 and 2001-02 to improve the provision of appropriate, high-quality care and treatment for children and young people, by building up locally based services. My hon. Friend the Member for Waveney (Mr. Blizzard) said that he felt that services in his constituency were not adequate. If he is prepared to write to me, I shall be happy to look into the circumstances that he has described: they are clearly not acceptable.
National priorities guidance issued to health and social services makes it clear that they should be improving staffing levels and training provision, and also improving 312 liaison between primary care, specialist child and adolescent mental health services, social services and other agencies.
We are particularly concerned—my hon. Friend did the House a service in drawing attention to this—about reports of delays that beset families who are worried about their child's development. Sometimes there is insufficient co-operation between child development centres and child and adolescent mental health services. While families in some parts of the country must put up with delays of months and even years, in other parts of the country there has been joint planning between health and social services, the child development centre and CAMHS, so that children with suspected communication difficulties can have prompt access to local assessment services.
We must recognise that there are difficulties in recruiting child psychiatrists and other mental health professionals in some parts of the country, but it is clearly not acceptable for families to wait for long periods for assessment and treatment, which often represent the crucial stage in a young person's development. CAMHS development strategies are now required from health and social services authorities, and will be expected to tackle problems of delay. If we can provide a prompt and effective service in one part of the country, it should be possible to do so everywhere.
By improving the general level of services for children, including those with disabilities or mental health problems, we are trying to provide the infrastructure to deliver better services for children and young people with autism. Similarly, the steps that we are taking to modernise health and social services for adults, and to make them more responsive to individual need, will benefit autistic people and their families. For instance, the new flexibilities introduced in the Health Act 1999 should help to ensure closer co-operation between the various agencies involved in identifying and meeting the needs of autistic people. My hon. Friend the Member for South Thanet was entirely right that the best services would be properly joined up and linked across local organisational boundaries.
Within the context of our more general initiatives, we have been taking action to improve services for autistic people: both those with a learning disability and those without. For example, in 1998, we published "Signposts for Success", good practice guidance on commissioning and providing health services for children and adults with learning disabilities, including those with autism. Last year, we followed that up with "Once a Day", a booklet setting out good practice for primary health care teams, which includes a reminder to those working in the teams that autistic disorders occur frequently with a learning disability.
Last year, as I am sure my hon. Friend will be aware, my right hon. Friend the Secretary of State for Health announced that we were starting work on developing a national learning disability strategy. That strategy will cover everyone with a learning disability: children as well as adults. Many, but of course not all, will also have autism.
We are involving a wide range of interests in the development of the strategy through working groups, seminars and formal and informal meetings with individuals and organisations. Later in the summer, we will consult the National Autistic Society specifically on children's issues relating to the strategy.
313 Although that will be primarily a strategy for health and social services, clearly, it is important that the needs of people with learning disabilities should be addressed as a whole. Consequently, we are involving other Government Departments, as my hon. Friend wants us to do, including the Department for Education and Employment, the Department of Social Security and the Department of the Environment, Transport and the Regions, in the strategy's development. Our aim is to launch it by the end of the year.
We have been undertaking some work on the needs of autistic people who do not have a learning disability. Late last year, we commissioned Dr. Tony Holland to undertake a review of the current issues surrounding the diagnosis, management and treatment of children and adults with Asperger syndrome. We have received his report and are considering his recommendations. The views of the National Autistic Society, the Royal College of Psychiatrists and other interested organisations will be fully taken into account as we decide on the way forward.
There are many other things that I should like to say, but, sadly, I think that I will not be able to say all of them. I accept my hon. Friend's point about the importance of education services and the need to ensure that the Department for Education and Employment and the Department of Health work closely in continuing to find ways to improve the services that we provide to children with autism and to their families. There is much work for us to do in that area.
My hon. Friend might be interested to know that the report by the National Autistic Society entitled "Inclusion and Autism: Is It Working?" found that an increasing number of parents of autistic children said that they were satisfied with the education offered to their children. Compared with two years ago, 40 per cent. more parents 314 said that they were satisfied with their child's education. Eighty per cent. said that their child was better served in mainstream schools.
My hon. Friend has done his constituents, the House and everyone with autism a service in raising those important issues. It is clear from what he said—and probably from what I have said, too—that, although we have made a positive start, there is still, as I am sure all hon. Members who are present in the Chamber will accept, much to do. We accept that point. We are looking seriously at the issues that he has raised, particularly issues about the data with which we can better plan services.
My hon. Friend is right. If we are to develop effective policies and services locally, and to ensure that the extra investment that is going in is effectively spent, we will need better information about the prevalence of autism. As I have said, we are working closely with the National Autistic Society to find the best way in which to take that work forward.
We accept that that is a perfectly valid criticism of the present situation. It is not a good situation in which to find ourselves. Obviously, good research information is the essential underpinning to ensure that policy development is effective and well targeted, but, with his support and that of other hon. Members, we have a special opportunity to develop services effectively.
We are certainly up for that. As I have said, we look forward to working with all people of good will who share our ambition to improve the range of services that we provide to people with autism and their families. That is the right thing to do. It is certainly what the Government want to do.
§ Question put and agreed to.
§ Adjourned accordingly at one minute to Two o'clock.