§ Mr. Hartley Booth (Finchley)I pay tribute to the patient parents of autistic children, the fine work of care workers and teachers of autistic children, the outstanding work of the North East London Autistic Society and the pioneering work of the National Autistic Society. I should like to speak, most of all, on behalf of those thousands of people who cannot speak for themselves—those who suffer from autism. I intend to refer to the definition of autism, its history, research into it and recently published reports, and to make some recommendations.
Autism is a controversial disorder, but certain factors are agreed upon. It is a human disability or disorder that is biologically based, but is believed to be caused by organic brain damage. It is a developmental disorder, but lasts throughout life. It is found in those with all levels of IQ, but is commonly accompanied by mental handicap. It is described by Lorna Wing, an acknowledged expert, as
a severe disorder of communication, socialisation and imagination.It is estimated that 1 million families in Britain are affected by autism, which affects far more boys than girls. It is found among those of all races, nationalities and social background, but it is reported that it is subject to cultural concealment in some groups.The way in which autism manifests itself varies, but typical features include resistance to change, wandering about smiling—no reference to politicians—obsessional or ritualistic behaviour such head shaking or spinning, stereotyped movements, high levels of anxiety, lack of motivation, inability to transfer skills from one setting to another, vulnerability and susceptibility to exploitation, anger, depression, challenging behaviour, disregard of people with a closer attention to objects and self-injury. That is quite a daunting list.
The National Autistic Society has summed up what it calls the triad of impairments in autism as the absence or impairment of two-way social interaction; the absence or impairment of comprehension and the use of language and non-verbal communication; and the absence or impairment of true, flexible, imaginative activity, with the substitution of a narrow range of repetitive, stereotyped pursuits.
A psychologist at one of the departments of psychiatry in London, Simon Baron-Cohen, has summed up the condition as one that affects some children from birth or infancy and leaves them unable to form a normal social relationship or develop normal communication. As a result, the child may become isolated from human conduct and absorbed in a world of repetitive obsessional activities.
A parent, Mrs. X, has summed up what it is like to have an autistic child. She said that one has to have a sense of humour, otherwise one would go under. She also said:
It's being able to eat Sunday lunch while sprinting around the house at a very quick pace. It's telling yourself that nobody has ever died with lack of sleep and life is too short to lie in bed anyway. It's being able to look calm in a packed shop when your child is having a major temper tantrum on the floor. It's being able to smile and be pleasant to people when really you could scream and shout. It's being able to pretend you're deaf when everyone around you is tutting at your child's behaviour. It's being able to say, 'Yes, my child looks beautiful, but that will never make him/her normal, so what does that matter.' And mostly, at the end of a very long day, when you look at your child asleep in bed, it's being able to say, 'I love you'.309 So speaks the mother of a young child, but what of an adult with autism? A case study of a young man called Christopher, aged 24, has just been produced by the National Autistic Society. It says:Picture a handsome young 24-year-old accompanying his mother to Sainsbury's to do the weekly shopping. Imagine … the alarmed reaction of other shoppers and the acute embarrassment of his mother when Christopher decides to leap down the isles with the trolley, yelling exuberantly the chemical formula for manure ('S H one T' for the uninitiated)".I hope that that last remark did not pass as unparliamentary language and that it is permitted in the context. The report also asks people to imagine what it is like when that young man, who as a child hated being cuddled or restrained in any way, now wants, in his 20s, to drape his 6 ft 2 in frame over the 5 ft 2 in frame of his mother. It asks us to consider how complete strangers feel when he decides to creep up behind them and shout "hairdryer" very loudly just for the fun of seeing their astonished reaction.In total, there are about 25,000 children and 120,000 adults with autism in the United Kingdom. I want to consider how we can help them best. Autism was first diagnosed in 1943 by an Austrian psychiatrist, Leo Kamer. Its subsequent study has been dogged by as much misunderstanding as illumination. Autism is not caused as a result of emotional deprivation or emotional stress. It is not a withdrawal into a fantasy world or founded on a wish to avoid social contact. It is not due to parental rejection or "refrigerator" parents. It is not a middle-class disorder. It is not a mental illness, nor is it linked to genius or simply another word for mental handicap or a learning disability.
Although autism is widespread and is an important topic, there has, sadly, never been a debate in the House on it before today. Since 1971, the National Autistic Society has placed several reports in the Library of the House, but it was not until recently that a significant number of parliamentary questions have been tabled on it and reference made to it in debate. It was not, however, mentioned specifically in the Education Acts of 1981 and 1993, or in the code of practice.
The first ever published report on the facilities for autistic children in any region—north London—was published a fortnight ago. It was entitled "Going the Distance". I am pleased to see that my colleague from north London, the hon. Member for Hornsey and Wood Green (Mrs. Roche), is present. I wrote that report and I was ably assisted by Jonathan Bartley. A copy of it has been placed in the Library.
The report covers 52 constituencies in north London. We gathered evidence from 100 different sources, which revealed that there were about 1,500 cases of autism in a population of nearly 1 million. When certain facts are discounted, that means that one child in 450 under the age of 18 suffers from autism. We discounted those suffering from Asperger's syndrome, which is a similar disorder, but included all levels of autism. Of the number recorded, 75 per cent. have severe learning difficulties. That means that 1,100 children need specialist treatment in north London, but there are just 350 places for care. That means that the parents of those children have just a one in three chance of having their difficult children, whom they love, properly helped.
What is desperately needed is a broader knowledge of autism. We must identify what is needed. It is unsatisfactory that Barking and Dagenham, Brent, 310 Camden, Hackney, Haringey, Harrow, Havering, Kensington and Chelsea, Redbridge, Tower Hamlets and Westminster have no specialist facilities. That means that 11 out of 20 north London boroughs offer no facilities for autistic children. Barnet has taken the lead with such care, but, unfortunately, its provision is one third below the London average.
I should like to pay tribute to the outstanding work of teachers and care workers in my constituency. The recent work carried out at Oakleigh school was first class. Peter Carney, the head of Oak Lodge school for the past 20 years, has been outstanding in his work to assist autistic children. This morning, he told me that the expertise of his unit needs to expand to cover all age groups.
It is sad to note that the local council in Barnet treated my report as one about a fringe interest. That is especially sad, because its work for autistic children has been excellent in the past. The report condemns the distances covered by the parents of autistic children and describes it as a national scandal.
What can be done? First, early diagnosis is vital. It permits assessment and proper specialist remedial help, which can dramatically mitigate the effects of autism. Failure to recognise the condition early denies a child the chance to benefit from what help is available, and all too often condemns that child to severely life-limiting effects of the condition. It also sentences the community to paying much higher bills to care for what will be a bigger problem in later life, and condemns thousands of marriages to huge stress while disturbing thousands of siblings.
Secondly, as the report makes clear, far more day and residential facilities for autistic children are needed, in the right place. I was prompted to write the report by the story of a child, Matty Solomon, who was taken on a day's journey to the midlands for his treatment. Others beg, borrow and sell their possessions to send their children to the Higashi unit in Boston, in the United States, or spend seven hours a day travelling across London to take their children to the only help that is available—or, indeed, travel only as far as the waiting rooms provided by local authorities, where they are told that there is no help.
Let me tell the Minister that we need more help in this country now. We need more residential educational facilities, and more respite for parents; we also need to provide more day provision for autistic adults. The Government must begin by reviewing the needs of the forgotten children. I know that my hon. Friend the Minister is concerned about this topic; I hope that he will be able to promise the representatives of autistic children who are listening in the Public Gallery, and others who will hear the debate, that the Government will undertake a proper national review of all care needs for autistic children that goes beyond the report begun in 1992 by Jones and Newson, only the first stage of which was ever produced for the Library of the House.
It is now clear that more early care can be provided and paid for from savings made by early assessment and provision. The Government should use the Cabinet Office to co-ordinate the work of the many Departments that should be involved—the Department of Health, the Department for Education, the Department of Social Security and, indeed, the Department of the Environment, which funds local authorities. I have pledged to raise the money for more residential educational facilities in north London, and—along with colleagues who attended the 311 launch—promised to keep autistic children in the eye of Parliament. They may have been forgotten once, but they must never be forgotten again.
§ The Minister of State, Department for Education (Mr. Eric Forth)I am grateful to my hon. Friend the Member for Finchley (Mr. Booth) for raising this important issue. I acknowledge that—as my hon. Friend pointed out—it is surprising and disappointing to many that it has not been considered here before; he deserves credit for raising it today.
My officials and I have looked at the recent report "Going the Distance", which my hon. Friend co-authored. I, too, sympathise with the difficulties experienced by relatives and friends of those who suffer from the condition: they need the maximum support and help from schools, local authorities, Government and others.
Before dealing with the position in north London, let me say a little about the broader context. As my hon. Friend has acknowledged, the assessment of autistic children for a statement of special educational need, and then the identification of a suitable school for them, is a statutory responsibility of the local education authority in whose area they live. That is not simply an administrative matter. My hon. Friend's report rightly recognises that autistic children, like others with special educational needs, have widely differing requirements, depending on the nature and severity of their disorder. They require a range of provision to meet those needs; decisions about the provision can only be made locally, in the light of a careful assessment of the needs of each child by professionals who know the child. I am sure that that much is common ground.
As my hon. Friend said, it is not always easy to diagnose children with autism. In cases of severe disorder it is usually clear early in the child's development that something is wrong, and diagnosis may come quickly; for others, however, it may take much longer. Once the condition has been diagnosed, children may be educated in local education authority or grant-maintained special or mainstream schools, or in autistic units attached to special or mainstream schools. They may be educated in independent schools, such as those run by the National Autistic Society, or in non-maintained special schools. Placements at independent and non-maintained special schools are paid for by the LEA when that provision is specified in a child's SEN statement.
The majority of autistic children attend schools and units capable of meeting the needs of children with a range of special educational needs; perhaps one child in eight attends a school or unit that specialises solely in teaching children with autism. It does not necessarily follow that the provision for the majority of autistic children is not appropriate. In particular—as I am sure my hon. Friend is aware—the pros and cons of residential placement for autistic children remain the subject of much professional consideration and discussion.
My hon. Friend's report recommends a Government inquiry into the needs of autistic children, and he repeated that request today. As I know he is aware, the Department of Health and my Department have been sponsoring research by the university of Nottingham into current interventions for children with autism. Stage 1 of the project identified facilities and services in England and Wales that cater for children and adults, and summarised 312 information on the current arrangements for the education, treatment and handling of those with autism. A copy of the report of stage 1 was placed in the Library of the House in 1993.
Stage 2 of the research—which goes more deeply into the main characteristics of the forms of education and treatment identified in stage 1 and evaluates the effects of these approaches on the behaviour and skills of autistic children—is now in its final stages. I hope that the team's report of that work will be available later in the year. My officials and those from the Department of Health are in contact with the NAS about taking forward the results.
The evidence on which my hon. Friend draws is up to date. The fact is, however, that, while his inquiries were being undertaken, schools and LEAs began to revise their procedures to match the new code of practice on the identification and assessment of special educational needs. The code came into force in September last year. It incorporates tight time limits on the procedures under which LEAs and other professionals have to assess children and make statements of SEN where appropriate. In particular, the new arrangements under the Education Act 1993 give parents powerful rights in the selection of the school to be named in their child's statement.
When parents are not satisfied with the statement or with the school named by the LEA, they can appeal to the independent SEN tribunal. Since last September, the tribunal has been handling the first appeals made by parents dissatisfied with aspects of the statementing process, including the school named for their child by the LEA. Although I do not wish to diminish the importance of the case made by my hon. Friend, it is a fact that, of the 559 appeals to the tribunal up to the beginning of May, just 1 per cent. have concerned autistic children. I do not know what conclusions we should draw from that; I simply state it as a fact.
§ Sir Michael Neubert (Romford)Does my hon. Friend agree that that appeals procedure is very important to autistic children and their parents? A case in my constituency, involving Terry Murray junior, involved a tremendous tussle between the parents and the local authority. In making both assessment and provision, an authority can be both judge and jury, and that issue needs to be tackled.
§ Mr. ForthIndeed. That is why the tribunal was established. It is now an independent and impartial body, to which parents who are not happy with what has happened can go and obtain a judgment independent of the local education authority. Early suggestions are that it will be an enormous step forward, providing new justice and fair treatment for parents of children with differing special educational needs, including autistic children. It goes further than that because part of the code of practice requires that needs specified in a child's statement must be mirrored by a clear statement of the provision that the authority is to make for that child. The link between needs and provision is more clearly established, and LEAs are better placed to judge the extent of any shortfall in provision than ever before.
I want to stress to my hon. Friend that I believe that what is new since last September—although it is early days to judge—is that a new clarity will emerge in the nature, effectiveness, use and targeting of moneys that LEAs establish for special needs provision, both at authority level and in schools. In time, there will emerge a new 313 understanding at every level of the availability of funds and the availability and provision of places for conditions such as autism. We are now in new territory, and an increasing amount of information will be available of the sort that my hon. Friend will be able to use—and we shall want to look at—to carry forward cases such as the one that we are considering today.
Enfield has recently increased its provision for autistic children; Islington is proposing to increase provision so that it can make regional provision for autistic children in north London. I have heard that yet another LEA in the area may propose to establish a unit for autistic children at a school for pupils with moderate learning difficulties. There is some suggestion that steps are already being taken—I should think partly as a result of the clarity provided by the code of practice.
§ Mr. Jeremy Corbyn (Islington, North)I apologise to the House for not being present for the speech of the hon. Member for Finchley (Mr. Booth).
The Minister of State is talking about expansion facilities. He will be aware that Harborough school in my constituency does excellent work with autistic children, and is a wonderful school in many ways. There are proposals to expand its provisions. What is the Government's attitude towards the expansion of provision to give better facilities? I am well aware that many people successfully appeal against the non-provision of places, but there is no special school available. Although the appeal process is welcome, it is limited if, ultimately, there are no places to be found.
§ Mr. ForthThe hon. Gentleman makes a fair point. The Government's attitude is that we would want to give support and a fair wind to any authority that comes forward with sensible, positive proposals to deal with such need. It is rightly a matter for the authority, with its local knowledge, to decide what should be done. We would not want to stand in the way of well-thought-out and properly designed proposals that meet a clearly identified need in the locality or beyond. I hope that there will be no problem.
Given the spectrum of needs and the range of provision that may be appropriate, it is difficult to pin down a shortfall in the way suggested by my hon. Friend the Member for Finchley. Although many LEAs maintain their own specialist provision for children with autism, there is a danger that some will be tempted to place their own children first. If that means that other autistic pupils are on lengthy waiting lists, the LEAs responsible for those children will have to give serious and early consideration to whether there are alternative approaches to meeting their needs.
Not every LEA will be able to, or need to, make its own specialist provision. In some cases, collaboration between LEAs may well be desirable; but, in the first instance, it is for each LEA to satisfy itself about the adequacy of provision for the children for whom it has responsibility. It would be open to, say, the National Autistic Society to convene discussions with LEAs to seek a common view of the position locally. If those discussions led one or more LEAs to publish statutory proposals for new schools or units, the Secretary of State would want to consider 314 them carefully, together with any associated bids for capital support—the point made by the hon. Member for Islington, North (Mr. Corbyn).
Another factor in the equation is that 11 of the boroughs in north London are at stage 2 or 3 of the grant-maintained process. That means that the Funding Agency for Schools may also be able to propose new provision. I understand that the FAS is considering carrying out a survey of special educational needs units at grant-maintained schools. If a need were established for more autistic provision, the FAS could have a role in considering how such provision should be made. In any event, I would hope that the FAS could be associated with any local discussions on that subject. Such discussions could be fruitful for all parties involved, and I hope that they will consider that proposal with some urgency.
Another route would be for voluntary bodies or charities to consider establishing, or expanding existing, non-maintained special schools to cater for children with autism. Those are schools run by voluntary bodies on a non-profit-making basis. The voluntary body would need to apply to the Secretary of State to open a school or change the status of an existing school. Such applications are considered sympathetically, but stringently. A non-maintained special school can apply to the Secretary of State for capital grants to improve existing buildings or to build new premises, although I must stress—nobody will be surprised to hear me say it—that the money for such purposes is, of necessity, limited. We try to use it in the most effective way. I would therefore expect most of the money in those cases to come from the charity's private income. The running costs of such schools are normally covered by payments from LEAs that place children at them.
I hope that I have demonstrated to my hon. Friend the Member for Finchley that the Government are well aware of the importance of appropriate provision for autistic children. The Government's job is to ensure that there is a clear framework in which local authorities and other professional services, together with parents, can work out solutions to match each child's needs and to ensure that information is available nationally to help authorities determine best practice. We have achieved that in the Education Act 1993 and the code of practice.
We now have the opportunity to identify the needs more clearly and to match them to the provision. We can judge more clearly the effectiveness of existing funds at every level. There is scope for further action to be taken—perhaps headed by the NAS, and no doubt helped by my hon. Friend the Member for Finchley. That action would involve the LEAs and the FAS and would carry forward my hon. Friend's work, for which I praise him. We must ensure that the provision for this vulnerable group of school-age children—and those who are older—is the best available. We must give every support, not only to the young people involved but to their families. I am sure that we all share that aim.
I hope that my brief remarks have contained some hopeful signs for the future. I wish my hon. Friend well in pursuing the interests that he has brought before the House today.
§ .Sitting suspended.
315 2.30 pm§ On resuming—
§ It being half past Two o 'clock, the motion for the Adjournment of the House lapsed, pursuant to Order [19 December].