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§ Linda Perham (Ilford, North)I am delighted to have secured this debate at the beginning of autism awareness year 2002. My initiating it is particularly appropriate because Ivan and Charika Corea, whose initiative autism awareness year is, are my constituents. They live in Buckhurst Hill, Essex, in the London borough of Redbridge with their five-year-old son, Charin, on whose behalf they have fought to access the services that he needs as a child with an autistic spectrum disorder.
Autism is a lifelong developmental disability. This complex condition affects the ability to communicate and socialise with others. Charin is one of an estimated 520,000 individuals in the United Kingdom with autism—60 per 10,000 children under eight, according to the Medical Research Council's "Review of Autism Research: Epidemiology and Causes", which was published last month. It says that
the prevalence of autism in the adult population is not known.Charin was born on 3 February 1996 at the Royal London hospital in Whitechapel by emergency caesarean, because he was suffering from foetal distress. By the age of 21 months, Charin had changed from an active animated baby into a withdrawn child who was unable to speak, made no eye contact and lived in a world of his own.The diagnosis of autistic spectrum disorder began a time of frustration, anger, desperation and exasperation for Ivan and Charika as they battled for appropriate care for Charin. Ivan wrote to me, other Members of Parliament, voluntary organisations, business people and celebrities. I stand here today introducing this debate for autism awareness year 2002 because of his persistence and commitment. There are many calls on an MP's time, as hon. Members well know, and there are many appeals to lobby for more resources for this underfunded service and that worthwhile cause. Before I met Ivan, I was involved with and supported many health campaigns, but my interest and involvement in autism is almost entirely due to Ivan, Charika and their fight for Charin
Autism awareness year 2002 began, Ivan told me, as
a small acorn of an idea in our lounge".It is now the largest ever autism movement in the UK, involving nearly 300 organisations as partners, including the British Institute for Brain Injured Children, the Disabilities Trust, the National Autistic Society, Parents Autism Campaign for Education and Autism London.One of many pleas made by Ivan for support for the year found its target with the British Institute for Brain Injured Children, which took up the challenge to declare the year with the assistance of the Disabilities Trust. They set up a partners meeting for organisations expressing an interest, at the end of which they had an impressive ribbon to mark the year, which I am wearing, from an organisation called Allergy Induced Autism and an invitation to apply for a grant from the Shirley Foundation. It also supports the all-party group on autism
. I must acknowledge the excellent work of that group, which was formed nearly two years ago and is inspirationally led by my hon. Friend the Member for 227WH South Thanet (Dr. Ladyman). We have 145 Members from both Houses, including Ministers and Opposition Front-Bench spokesmen, and our meetings are interesting, informative and well attended
Autism awareness year 2002 is supported by 153 Members of Parliament who signed early-day motion 103 just before the general election last year. As a result of the campaign, the Scottish Parliament held a debate on 6 December 2001 on issues surrounding autism and a website to publicise the events and links of the year was launched by the Minister of State, Department of Health, my hon. Friend the Member for Redditch (Jacqui Smith), at the Labour party conference last October.
The year's events started this week with Autism Sunday on 6 January. January has been designated the month of prayer for autism, and members of churches, mosques, synagogues, gurdwaras and temples will pray together for autists throughout the UK.
On 11 February, the Patrick Gunawardena 2002 Education Awards UK will be held in the House to thank MPs, peers, parent groups, carers, charities and the media for supporting the autistic community. Patrick Gunawardena was a distinguished educationist from South Asia who also taught in the UK. On 14 February, an inaugural conference is scheduled to be held by the prestigious London health charity the King's Fund, followed by nine regional seminars
What is autism awareness year 2002 all about? The mission statement is to raise awareness through partnerships on the issues surrounding autism and to influence and inspire to action those individuals in key positions to facilitate the changes needed. The aims and objectives are to target the political, educational, health and social care decision and policy makers and primary budget holders; to improve awareness in the relevant statutory sectors, giving them much-needed knowledge of what autism is, its effect on the individual concerned and what can be done to bring about improvement; to inspire local authorities to take a long, hard look at autism and to develop and implement clearly defined strategies to deal with the increase in this condition; to influence the Government to ensure equity and equality for autistic individuals; to achieve for parents with children who are autistic the ultimate benefit of being able to gain access to needed services in their local community; to work towards inclusion of those with autism at all levels; and to raise public awareness beyond the myths
Why is it important to have a year-long campaign? When referring to Charin at the beginning of my speech, I said that estimates of people with ASD in the UK are at about the half million mark, but many who work in the autism field believe that that figure could be doubled, as many people are undiagnosed and unknown to the authorities. That is why I strongly support the all-party group's call for clear data gathering by the Government, so that proper planning and provision can be made for the services that ASD people need.
Other important issues relating to autism are illustrated by the following statistics and facts: 33 per cent. of adults with autism have no social involvement; only 12 per cent. of those diagnosed with autism are able to work; ASD often falls into the gap between mental health and learning disabilities; only 38 per cent. Of 228WH people with autism or Asperger's have a community care assessment, and of those only 16 percent. Were offered one; only 45 per cent. of those assessed received the services specified in the assessment; 49 per cent. of adults with autism or Asperger's are still at home with their parents; the average lifetime cost of supporting an autistic person is estimated to be £2.9 million, excluding the loss to the economy of autistic people who cannot live independently or earn their own living. The total cost to the economy is about £1 billion a year.
The British Institute for Brain Injured Children tells me that the Government are already spending a great deal on autism indirectly, for example on tribunals. A survey by Parents Autism Campaign for Education found that a quarter of its sample had to resort to special educational needs tribunals to get the support they need in several examples: administration and specialist time while the duplication of assessments continues; during transition with accommodation costs and mentoring for adults diagnosed late; meeting the cost of mental health problems caused as a result of late or misdiagnosis and family mental health problems; the prosecution through the criminal justice system of undiagnosed adults and adolescents and those with inadequate support in the community; and excluded children. Above all, autism awareness year is a golden opportunity for families, carers and all those working for people with ASD to shout loudly about autists' needs.
The courses of action identified by groups and individuals who have contacted me include an urgent need for routine screening of young children before going to school and throughout their education; more investment in research into the causes of autism with ring-fenced funding to ensure that it is given the priority it deserves; more investment in schools, specialist units, early intervention and support services including residential and respite care, again with designated funds; increasing awareness of accompanying physical problems, including food allergies and bowel disorders; the need for a diagnostic one-day one-stop shop to prevent concerned families from being passed to a succession of different professionals to secure a clear diagnosis; establishing a clear pathway from diagnosis to intervention to give families proper support; an initiative to promote autism awareness and skills training for all who work with people with autism; recognition of and provision for adult autists; access to appropriate education from pre-school onwards; consistency and equity in funding allocation—the PACE survey found that over a third of parents of autistic children reported difficulties in obtaining LEA funding and a fifth of over-fives received no funding at all; budget pooling by local agencies; the need for autism to have its own classification and not be categorised as a learning difficulty; and increasing the availability of qualified experts including specialist teachers, educational psychologists and speech and language therapists, which has been a particular problem in my area for some time. A number of worried families have contacted me and I have raised their concerns with the local health and education authorities and in the House
Redbridge primary care trust has arranged a series of meetings for parents and carers, including one tomorrow. Furthermore, Ivan and Charika have heard that there is a local education panel meeting tomorrow to discuss the future of Charin's specialist speech 229WH therapy and educational support. They, like so many other parents and carers, feel that they should not have to keep battling for their child's rights. I agree with them.
I pay tribute to the work of local groups that have provided me with information and whose members are tireless in their support for others as well as coping with their own children's needs—some have several ASD children themselves. Redbridge Parents in Partnership, with which I have a long association dating back to my time as a local councillor, celebrates its 10th anniversary in May and I must acknowledge the work of Redbridge Autistic Families Together, Parents of Autistic Children Together and the Autism Professional Interest Group, which are compiling a Redbridge guide to social and communication difficulties services.
In particular, I acknowledge the assistance given to me for the debate by Fiona Loynes, the policy researcher for the all-party autism group; Pam Brooks from the British Institute for Brain Injured Children; and Milena Inzani from Autism London. I leave almost the last word to my constituent, Ivan Corea, whose dream for autism awareness year 2002 has been realised:
I am really excited by it all. I have worked so hard to raise awareness of the condition as a result of the stress and trauma we went through regarding Charin. It's been so exhausting, but it's worth it. It's wonderful to see it all happening.I know that the Government and the Minister are prepared to listen and that progress has been made in the past few years on several concerns of those who work to improve the lives of autistic people. I hope that autism awareness year 2002 will act as a springboard for real and sustained advances in the treatment and understanding of those with autistic spectrum disorders, so that those special individuals can achieve their true potential
§ Mrs. Angela Browning (Tiverton and Honiton)First, I declare a non-remunerated position as a special councillor on the national council of the National Autistic Society. I congratulate the hon. Member for Ilford, North (Linda Perham). In bringing the debate to the Chamber, she does a service to us all, particularly people with autism and their parents.
Autism is now almost a mainstream issue in the Houses of Parliament. A huge amount of progress has been made, and I congratulate the hon. Lady and the hon. Member for South Thanet (Dr. Ladyman), who chairs the all-party group, on their role in ensuring that when MPs receive constituency casework, as we all do, they not only have a better understanding of autism, but are able to stand shoulder to shoulder with their constituents, as the hon. Lady has done this morning. We must ensure that the support that we give our constituents helps to improve their lives.
Autism is a complex condition, primarily because it covers such a wide spectrum. That in itself can cause difficulties. I shall concentrate on the aspects that I believe should be given priority during autism awareness year to ensure that awareness is translated into appropriate action and support.
230WH It is sometimes said that autism is a rare condition, yet it is estimated that autistic spectrum disorders are approximately four times more common than cerebral palsy and 17 times more common than Down's syndrome. Autism touches the lives of 500,000 families in the UK, and many health, education, social services and other professionals routinely come across people with autism. Problems arise if the professionals do not recognise or suspect autism. If they disregard the significance of the symptoms presented to them or, even worse, make an inappropriate referral or treat the child or adult for something other than autism, that can lead to a downward spiral for the patient. That is the worst-case scenario.
In autism awareness year, we must ensure that the general public are more aware and we need them to be more tolerant when they come across someone with an autistic spectrum disorder. Prejudice in any form is to be abhorred, and it prevents true integration for those with autism. Bullying at school and unkind remarks are still severe problems for children with autism.
Autistic children grow into autistic adults, and a difficulty is that what most people might consider to be odd behaviour—I am always cautious about the use of language and I hope that I have chosen the right words—is sometimes thought rather threatening. Adults will tolerate inappropriate behaviour in a young child, but they are less sympathetic to a strapping young lad in his late teens or an adult in his 20s. They may see the behaviour as threatening, but those of us who deal with autism in our daily lives know that it is just normal autistic behaviour. The general public must develop a much wider tolerance and understanding of people with autism.
I shall touch on professionals and the role that they can play in autism awareness year. It is disheartening when parents take their child to a GP or a hospital specialist and their knowledge of the child is dismissed. Professionals sometimes think that parents become over-emotional, but parents are emotional about their children—I become emotional about my 32-year-old—and that never changes, even when they are 50. Parents may be able to make an important contribution to a diagnosis, and that should not be dismissed because they are emotional about their child. Living with autistic children is not easy and it is not surprising that their parents are sometimes emotional. The professionals should be open minded when parents attend a GP's surgery or a hospital with a child who may be autistic.
We rightly demand of medical professionals that they err on the side of caution if they are unsure and refer the child or adult—late diagnosis is not uncommon—to someone with experience of working with and diagnosing autism. It is different from many other conditions, so a degree of specialism from the medical profession is required to ensure that the diagnosis is accurate and to obtain a clear picture of where the sufferer is on the autism spectrum. That is important in drawing up a programme to help sufferers and their parents or carers. I hope that autism awareness year is recognised by all professionals and the medical profession in particular
During an Adjournment debate on Asperger syndrome, I flagged up a matter of great concern and I hope that you will indulge me, Mr. McWilliam, if I do so again. Adult sufferers, particularly those at the more 231WH able end of the spectrum, often develop mental health problems on top of the autistic condition. The hon. Member for Ilford, North referred to that. When such people come under the remit of mental health professionals, the autism may not be recognised. If there is a misdiagnosis, the patient may be sectioned under the Mental Health Acts or be given inappropriate drug treatment for a condition other than autism.
It is important that mental health specialists—there are very few who specialise in autism—are able to look through the mental health problems to what we would describe as normal autistic behaviour. The two are often confused and if sufferers get into a downward spiral of mental health treatment with drugs and in-patient stays—it is traumatic for people with autism to go into any hospital, particularly a mental health hospital—their problems are compounded. I say to the health, social services and education professionals, "Autism awareness year is your year as well." It is a year for professionals to make appropriate referrals and to understand that providing the best educational opportunities—many sufferers have huge potential—requires more than just a little more one-to-one attention. It requires understanding, case by case, of the way in which the condition manifests itself and best practice in maximising each child's potential.
The hon. Member for Ilford, North made two comments that rang a bell with me. First, she rightly said that services are patchy. Where someone lives should not affect whether they have access to appropriate services, and standards must be raised uniformly throughout the country. Secondly, she referred to the experience of her constituents in the case of Charin, using the words "fought" and "battled". As Members of Parliament and hardened politicians, we are used to fighting our corner and fighting battles, but far too often weary parents have to fight too great a battle. They are frequently at a loss over how best to deal with a child and serve its best interests. It should not be that way, and I hope that by the end of this year the battle will have been fought and won.
§ Dr. Stephen Ladyman (South Thanet)It is an honour to speak in this timely debate at the beginning of autism awareness year, and I congratulate my hon. Friend the Member for Ilford, North (Linda Perham) on securing it. I also congratulate her on many aspects of her contribution. Seldom have I heard such a good summary of the conditions that affect autistic people and the patchiness of service provision in this country.
It is also an honour to follow the hon. Member for Tiverton and Honiton (Mrs. Browning), who is a constant battler on behalf of autistic people. As she said, today's contribution is not her first in such debates, and it will not be her last. My hon. Friend and the hon. Lady were kind enough to say good things about the all-party group on autism, which I have the honour to chair, and they also said some nice things about me, although I should point out that the group's successes are ours, not mine.
In the two years since the group was set up, my admiration for fellow Members of the House has grown tremendously. Not once has anyone attempted to use this issue or the group for party advantage. Everyone 232WH has worked together closely, criticism of the Government has been constructive, praise has been given where due and everyone has offered both criticism and praise. In turn, the Government have responded in the way that we would like Governments to respond always. They have been open, taken up some of our ideas, been prepared to discuss matters with us and helped to move the agenda forward.
The success of the all-party autism group also owes a great deal to the steering group and those outside the House who support us and work with us to ensure that we have information. Thanks to the readiness with which the Government have accepted our ideas in the past two years, we have, in effect, been pushing at an open door, and they should be congratulated on that. A huge task remains ahead of us, however.
I pay tribute to Ivan, Charika and Charin Corea, who have fought hard in the past few months to establish autism awareness year, and it is wonderful that my hon. Friend the Member for Ilford, North has secured this debate, given that she is their Member of Parliament. This year is also the 40th anniversary of the National Autistic Society, and I hope that the events associated with that celebration and with autism awareness year enable us to do a great service for autistic people by raising awareness of autism to new levels by the end of the year, not just in the House and among the Government, but throughout the whole country. I also congratulate The Times, which ran its Christmas appeal in aid of the National Autistic Society. In the past month, it has published a series of excellent and informative articles on autism, and it has done a great deal to raise awareness of the issue in the run-up to autism awareness year.
What is important, however, is not how we start the year, but how we end it. We should judge the year on whether we have moved the agenda forward, got more resources into helping autistic people and put an end to the patchy services throughout the country. I am glad that the Under-Secretary of State for Health, my hon. Friend the Member for Pontefract and Castleford (Yvette Cooper), is responding to the debate, as I believe that she has the ear of a man at the Treasury who has the ear of an even bigger man at the Treasury. As my hon. Friend the Member for Ilford, North said, autism has an economic dimension. It costs £1 billion a year and has a lifetime cost that is pocket change short of £3 million per autistic person. Those costs can be reduced, but only by putting resources in early.
The all-party group has found that assessment in schools is far from adequate or uniform. All children should be assessed as toddlers to discover whether they have autistic tendencies, and as soon as those are picked up, resources must be put in to help. The more we intervene early and the more resources we put in, as day follows night we will get better outcomes. People will need less support later in life and will be able to make a bigger and more viable contribution to supporting themselves and to the country. We must put money up front to save it at the end. That will eventually involve joined-up thinking between social services, health and education authorities, the Treasury and the Department for Work and Pensions to ensure that everyone works together to create a uniform service.
233WH I want briefly to tell hon. Members the story of a constituent of mine who introduced me to the problems of autistic people, but I am afraid that it does not have a happy ending. About four years ago, two mums and a dad came to see me. All had recently found that their children were autistic as toddlers and decided that they wanted their child to have a therapy called the Lovaas technique. However, they were denied that therapy by the local education authority.
The parents decided that one of them would take a test case to the SEN tribunal, and they came to see me about a week before to tell me what was going on. After hearing the case, the tribunal decided that the LEA was within its rights to deny Lovaas therapy, because it was not proven to be better than any other therapy that might be available.
Having won the case, the LEA decided to be generous. It gave Lovaas therapy to two of the families, but not to the one that brought the test case, because that case had been rejected. Those parents had to provide Lovass therapy from their own financial resources. As a result, the family was brought to the brink of financial ruin. A few months ago, the grandmother approached me to update me on the situation. She said that the child had made great progress over the past few years through Lovaas therapy, entirely financed by the family, and they had concluded that it might be possible for the child to have a mainstream school place. That would have been impossible without that privately provided intensive therapy.
I contacted the local education authority and received a letter in December saying that it had identified a mainstream school place for the child and would hold a multi-agency meeting, which takes place next week, to discuss how to support the child's return to mainstream school. The fact that the child can return to school is entirely due to the family's independent private financing of Lovaas therapy, at no expense to the LEA. Having sent the letter to the parents, I found that they knew nothing about the meeting. The LEA had not even told them that discussions were going on or that the meeting was to take place next week—all that was done without their involvement. Nevertheless, they were delighted.
Unfortunately, this week the father telephoned me to say that their marriage has finally broken up. The strain and financial consequences of providing the care proved to be too much of a struggle. That is the result of lack of support for a family that we, through the local education authority and the state, should provide. Consequently, the child will not make progress, the costs to the nation will be higher and the personal costs to the family are enormous. At the end of autism awareness year, we must be in a position whereby such families get the support that they need from the moment that they are identified as having an autistic child right through to their education and throughout adulthood.
Let us not forget the plight of autistic adults in this country. For example, 60 per cent. of autistic adults do not find out that they are autistic until they are 16. By that time, they have been through school and they have 234WH lost the opportunity to get the support that they need. They become more dependent on the state after that, and we must deal with the problem
I conclude with this brief analogy, which I have used several times, including at the all-party group's last meeting. Every Member of Parliament knows the syndrome represented by what I call the shopping bag lady. She comes to an MP's surgery with a plastic shopping bag full of letters. In my experience, such people are either involved in a court case that they have taken through every court in the land— nobody can understand it, but they think that their MP can help—or they are mums with autistic children, which means that the shopping bag is full of letters that they have had to write over the years in an attempt to get either recognition for the problems that they face or the right sort of support or to get their doctors to recognise the condition. Some have to struggle to get the child's dad to recognise the condition, as mum often spots it before dad.
For many months, such a woman will be told by her GP that she is "a silly worrying mother", which means that mum must battle with the GP to get recognition. Having obtained recognition from the GP, she must battle with the education authority and the health authority. Eventually, when the child gets older, she will battle with the Benefits Agency on his or her behalf. Those plastic bags are full of letters that such women have to write to get services that ought to be automatic and available everywhere. If we start to change the way that agencies provide support for autistic people so that fewer shopping bag ladies have to attend our surgeries, autism awareness year will have done its job.
§ Liz Blackman (Erewash)I begin by congratulating my hon. Friend the Member for Ilford, North (Linda Perham) on introducing the debate. I also congratulate her and my hon. Friend the Member for South Thanet (Dr. Ladyman) and the hon. Member for Tiverton and Honiton (Mrs. Browning), on raising parliamentary awareness of autism.
As Members of Parliament, we have all touched the lives of the families of those who have the condition known as autism. There are common denominators in every case with which I have dealt. There is always a high level of frustration centring on diagnosis, as well as wrangling or battling—a common theme this morning—about responsibility and funding between different statutory bodies and about the appropriateness and quality of support. I deal with parents, carers, professionals and people with the condition who come into my surgery. That experience was described by my hon. Friend the Member for South Thanet.
The hon. Member for Tiverton and Honiton reminded me of a recent case involving a young person who has Asperger's syndrome whose social worker had gone off on long-term sick leave and not been replaced. I intervened, and another social worker was appointed. I had cause to speak to the new social worker, who had a specialism in disability. When I asked, "What do you know about Asperger's syndrome?" she looked me in the eye and said, "I'll be quite honest, absolutely nothing." She knew about other disabilities, but not AS, so I handed her a copy of the Adjournment debate 235WH introduced by the hon. Lady, because it set out so well not only the symptoms but the difficulties faced by young people with AS.
I pay tribute to the tremendous work by the National Autistic Society. Its interrelationship with the work being done in Westminster has been vital to moving the agenda on. Members of Parliament, professionals, and—to a degree—the public are now more aware of the condition of autism, but awareness must be further raised, so this year is important.
Many statistics and much information about autism have been provided by the previous three speakers, and I fully endorse everything that they said. I decided that from the outset I would concentrate on the specific disability of Asperger's syndrome. AS often baffles parents, carers, professionals and colleagues—if the individual is lucky enough to be in work—more than other disabilities on the autistic spectrum because it is high functioning autism. Many people with AS have qualifications and good language skills, so without spending some time with them and going beneath the surface, it is not necessarily possible to pick up the fact that there is a problem or disability. It is so easy to assume that such individuals are functioning, but so wrong to do so.
The behaviour of people with AS is characterised by huge difficulties with social interaction and by rigid thought patterns. They find it immensely hard to read social cues and they display obsessive behaviour. When they reach adult life, they have tremendous difficulty integrating. Life is much harder as an adult: as the hon. Member for Tiverton and Honiton said, a young person or child is allowed certain quirks or oddities, but allowances or tolerance for such behaviour disappear for adults. People with AS have great difficulty in holding down a job: as my hon. Friend the Member for Ilford, North said, only 12 per cent. are in full-time employment and almost 25 per cent. of adults with AS do nothing at all. They are often housebound because they do not possess the confidence or social skills to go out, make contacts, have friendships and establish emotional relationships
In effect, AS puts individuals betwixt and between because they display no apparent physical difficulties and are coherent on the surface. The intolerance of other adults towards adults with AS is hurtful to those with the condition. They are often ridiculed, shunned and bullied. Life is cruel to them. Their intelligence, which is often average or above average, enables them to compare themselves with their siblings and peer group more effectively than other young people with autism. They know that they are unable to achieve the rites of passage of their peers and siblings, and they can predict what life holds in store for them with a fair degree of certainty. They know that they will be lonely, that they will not establish friendships, and that they will not be able to form a long-lasting relationship or marry
It is hardly surprising that such people have low self-esteem, and that they are often clinically depressed and have mental health problems. It is also unsurprising that about 8 per cent. of this group commit suicide. I would be interested to know whether Government statistics state how many suicides are committed by young people with AS. I suspect that the number is high.
§ Mrs. BrowningThe hon. Lady will recall that I asked the Under-Secretary of State for Health, the hon. 236WH Member for Salford (Ms Blears), to examine that question in my Adjournment debate on Asperger's syndrome. I hope that the Department of Health will consider it. A suicide or attempted suicide rate of 8 per cent. among that group is unacceptable. As the hon. Lady and other hon. Members know well, many such incidents are preventable.
§ Liz BlackmanI agree. That harks back to my point that the clarity of thought of young people with AS and the way in which they are able clearly to assess their life chances drive them to such a desperate state.
Such people have the right to have their needs assessed by local authorities, but only 38 per cent. receive a community care assessment, only 16 per cent. are offered one as of right—the rest must fight to get one—and only 50 per cent. receive appropriate services. For young people with Asperger's syndrome, a key stage of life comes at the age of 18, marking the transition from adolescence to adulthood. However, only slightly more than half had a transition plan in place at that stage, and 65 per cent. of adults had no community care plan. Parents are confused and do not know which statutory service is responsible—indeed, the responsibility often falls between agencies, and because no lead agency is identified, people constantly fall into the gap between mental health and learning disability services.
The Government have made significant progress in their work for people with autism and Asperger syndrome. The White Paper "Valuing People: A New Strategy for Learning Disability for the 21st Century" does not preclude those with AS from benefiting from such services if that is the best way to meet their needs. Prominent in the guidance is the fact that young people with AS may require an assessment of their social functioning to establish their level of need. That principle is sound, but everything is dependent on practice
I would like to explore the statistic that only 12 per cent. of young autists are in work. Attention must be and is beginning to be paid to access opportunities for employment and to continuous support for young people in employment. Local authorities have just produced the first of three annual investment plans on welfare to work for disabled people, but the proof of the pudding will be in the eating.
I dealt recently with two cases involving young people with Asperger's syndrome. They came under the remit of the Employment Service disability team and the Interwork scheme. One should be entering the scheme in the next few days, albeit after a long haul. The other is currently in the scheme, but problems have developed and that young person cannot contact the Remploy Interwork job coach. He is depressed about certain events at work, but his job coach is inaccessible. I am sure that the scheme works well for many young people, but it must work well for them all. The case illustrates the fact that greater rigour is needed in the systems to support those young people
I acknowledge that there is good practice on the ground, but I smiled when other hon. Members used the same words—"patchy" and "battling"—as I had written when preparing my speech. Such words are typical of the cases that Members of Parliament deal 237WH with. Without a coherent strategy, I am not convinced that people with autism and Asperger's will get appropriate services. The key is Government guidance to local authorities, health authorities and other statutory bodies to clear up the confusion surrounding the appropriate support services and their responsibilities. People need unified support packages, but those are not currently being assembled consistently.
Life can be better for those young people when, rather than the current squabbling, there is adequate awareness, good training, unified support packages, clear lines of responsibility for funding and action and an identifiable gateway to services. Many parents do not know where to start and there must be a clear gateway of access. There is an absolute need for a transition plan from adolescence to adulthood, when continuous support is needed. The key is resources and the rigorous monitoring of the system, so that we know where it works, where there is good practice and where there are gaps.
Every young person with AS whom I have met has a great deal to give to their local community and to society. Their talents are being wasted and they are being consigned to loneliness and despair. That cannot and should not be tolerated. As my hon. Friend the Member for South Thanet said, autistic awareness being so high on the agenda this year gives us a golden opportunity to make progress on the issues raised in this debate.
§ Mr. Andrew Turner (Isle of Wight)I did not intend to speak, but I want to congratulate the hon. Member for Ilford, North (Linda Perham) on securing the debate and to recount my experience of autism.
One learns a great deal when one becomes a Member of Parliament—that is what is great about the job. I was a teacher before I became an MP. When I started teaching in 1979, one lad in my class was described as autistic. Fortunately, he had full-time support in the class, but I had little opportunity to speak to his assistant and little knowledge of the condition, as I was given no background information about it. It was not until two or three years ago when I became a parliamentary candidate and constituents came to see me that I began to understand what autism is. That was 18 years after spending seven or eight years as a teacher and many more in the education profession. That is a frightening deficit—I hope that it is not so bad for teachers now. In retrospect, I realise how gaping was the void of my knowledge of the condition.
I learned more about the condition because people came to me for help. I pay tribute to Claire Franklin: she works tirelessly not only for her own child, but for others by attending special educational needs tribunals on their behalf, although she is less able to do so now because she fears the way in which the LEA will treat her child as a consequence. That is frightening. Jimmy Spence, who was a councillor on the Isle of Wight, first raised the issue with me. I also pay tribute to my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning), who visited the island two or three years ago and met a large group of people, mainly mothers with children who suffer from autistic spectrum disorder.
238WH My great interest is education, so I shall confine my remarks to how we can treat children better in the education system. I will also lean heavily on the remarks made by the hon. Member for Erewash (Liz Blackman), who pointed to the need for a single gateway. As a former teacher and someone who has worked for an LEA in London, I see a great problem with the special educational needs legislation. The education service is required to take action, but other services "may" do so—"may" is a word that appears all too frequently in the legislation.
What goes on in the classroom and the school is only a small part of the education that the child needs. Especially in the case of a child who suffers from an autism spectrum disorder, it is no good to concentrate only on what goes on in the classroom. All too often, the SEN statement sets out only what the LEA must provide in the classroom and the school. It may refer to what the health authority or the social services authority do, but the LEA has no obligation to provide those services. The statement seldom provides for what goes on before and after school, or even on the way to school, and it almost certainly will not refer to the child's needs in the holidays, let alone to the needs of parents or of siblings, who often come second to the child with the greatest need.
I have a suggestion: in respect of SEN statements, the education service should take a leading role and accept the responsibility for meeting the financial needs of a child with an autistic spectrum disorder, whether that provision is made through education, the health service or social services. If a child needs language support, it is no good the health service saying —as happens all too Frequently—that it does not have the money and cannot provide the service. That would not be acceptable for the education service, and should not be acceptable for the health service. If parents need social services support in the holidays to provide respite care, or care for their other children, it should not be acceptable for the social services authority to say that it cannot afford that, any more than such an explanation is acceptable for the education authority. I hope that that single suggestion gives the Minister food for thought.
§ Paul Holmes (Chesterfield)The debate has been considered and issues relating to autism have been carefully analysed. The hon. Members for Ilford, North (Linda Perham), for Tiverton and Honiton (Mrs. Browning), for Erewash (Liz Blackman) and for Isle of Wight (Mr. Turner) made eloquent cases and gave moving personal examples from their experience of people with autism.
Autism is a condition that has been fully recognised and brought to the attention of professionals and politicians only in recent years. That is due to the efforts of parents and families of those with autism, and they deserve praise. Those families and self-help groups have much in common with those who are fighting to raise awareness of other issues such as attention deficit disorder or endometriosis, which have not had medical and professional recognition until recently.
Before the election in June, I spent 22 years as a secondary school teacher, when I gradually became aware of the condition of autism. I taught several 239WH children with autistic syndromes in an 11–18 school, and last year I taught a girl in year 7 who had fragile X syndrome. My experience mirrors the research findings of the groups involved in raising awareness of autism: according to them, 70 per cent. of teachers have taught children with autism. During my career, I taught four who had clear diagnoses of autism and several others whose autism was suspected but whose parents were struggling to prove it.
The research shows that during teacher training only 5 per cent. of teachers have been taught how to recognise and deal with the syndrome—when I trained, 22 years ago, I received no special needs education training—and that a further 5 per cent. have been on a training day linked to autism at some point in their careers. I was one of the 90 per cent. who did not receive any basic training in autism awareness. The teaching profession needs to address that issue. We did receive training from the special needs department, which circulated information when children with the syndrome arrived, but that is no substitute for proper training.
§ Dr. LadymanI agree with the hon. Gentleman and I am grateful that he raises the question of teacher awareness. The National Autistic Society documented the story of a little girl with an autistic spectrum disorder who was disruptive during literacy hours when the children sat in a circle. An autistic-aware teacher, who had received training, realised that putting a coloured carpet tile in the same place each day for the girl to sit on was all that was needed to solve the problem, which went away.
§ Paul HolmesI am grateful to the hon. Gentleman for that example. I taught a child who was regarded as "a problem child" because of his behaviour. He was very intelligent, but his behaviour was getting in the way of his education and that of his class. After three years, it was recognised that he might be autistic. As a result of that awareness and subsequent staff training, he completed his A-levels successfully and went on to university.
Increasing early awareness by screening at nursery school would make a huge difference to children's life experience. Integration in mainstream schools can work, as it does in so many areas of special educational needs. One eloquent example of that was featured in the question and answer session on The Times website on 4 December. A family posted this statement:
My daughter, Beatrice, is timid, obsessional and falls very clearly within the autistic spectrum. She has been educated at our local primary and secondary school with the full-time support of an LSA. Despite initial reluctance from some members of staff, she integrated very well and took part as fully as she could in school activities. The other children became aware of how to relate to someone whose social interaction was different from theirs and gradually relished the responsibility that this brought. The staff appreciated that teaching styles could be adjusted in a way that was beneficial to the rest of the class … I strongly believe that this approach is what charity is all about. Far too often people feel genuinely that all they need to do is to sign a cheque or put their hands in their pockets and that will be enough. It is not.Autistic people need their different behaviours to be recognised so that they are not left in complete isolation. This requires a willingness to re-evaluate attitudes and adopt a positive approach to those who do not conform to normal social codes. If The Times Christmas Appeal can get this message across I am sure autistic families will be extremely grateful. 240WH Working and learning alongside people who are "different" is rewarding for both adults and children. Integration can work, but it carries a bill. That example involved a full-time learning support assistant, and a cost was attached to that.
In the new year and beyond, we must raise awareness of autism and deal with the funding of relevant professionals, the educational process and support in adult life. We also need more research into the causes of autism, which remain uncertain. Recently, controversy has raged over a potential link with measles, mumps, rubella vaccination. The Government, working with the medical profession, should fund further research into the causes. Important research is due to be published later this year. We need effective screening of young children even before they start formal schooling. Pilot schemes have provided good examples: CHAT, the checklist for autism in toddlers, is an excellent guide. Good practice should be adopted nationally. We need a clear diagnostic definition of the symptoms of autism so that people can recognise it. It is often a long time before autism is recognised, and parents often have to battle to convince health and educational professionals that autism is indeed the problem.
The Centre for Social and Communication Disorders piloted the diagnostic one-stop shop, which has been shown to work. I hope that the Minister will tell us that the pilot justifies rolling the scheme out across the country. What measures will the Government undertake as a result of increased awareness of autism? Funding remains important, and ring-fenced funding has been proposed to ensure that the money is not lost in the wider morass of social services funding.
§ 12.6 pm
§ Tim Loughton (East Worthing and Shoreham)This has been an excellent debate in which we have heard many well-informed contributions from people with experience and pedigree. I congratulate the hon. Member for Ilford, North (Linda Perham) on securing this timely debate at the beginning of the year. Autism is topical for the wrong reasons—the recent publicity about the MMR vaccination has sidelined the real problems of autism, whatever its causes.
I am particularly interested in this subject in my roles as Opposition Front-Bench spokesman on health and vice-chairman of the all-party group on autism. I join the general love-in by paying tribute to the group's chairman, the hon. Member for South Thanet (Dr. Ladyman), who showed such effort and determination in setting the group up. He has achieved much in promoting understanding of autism. I also congratulate the National Autistic Society, which has distributed little ribbons today, albeit not yet to me. In its 40th year, I congratulate the society on promoting awareness of autism, establishing educational centres and providing support to families and local authorities, setting up help lines, producing literature, training and encouraging research. It provides a huge amount of help.
In common with other hon. Members, I became more aware of autism and Asperger's when desperate cases came to light at my constituency surgery. I realised that the problem was more prevalent than I had believed. It is estimated that every constituency in England has an 241WH average of 848 people with an autism spectrum disorder. Autism affects perhaps 500,000 families in this country at a cost of more than £1 billion. It remains too little understood, though the position is improving.
Autism still suffers from the "naughty child on the bus" syndrome. Unlike a child who cannot walk, for example, a child with autism may have no physical signs of any disability. Autistic children often play up, as ably described by my hon. Friend the Member for Tiverton and Honiton (Mrs. Browning), but the problem is often dismissed as mothers being unable to keep their children under control. We must educate people that there is more to autism. We must understand that is it not just bad behaviour simply because we cannot see a physical disability.
The hon. Member for South Thanet mentioned The Times Christmas appeal. The articles were exceedingly helpful, in that they gave real-life examples of what it means to look after an autistic child growing into adulthood. It is difficult to determine whether the prevalence of autism is increasing or whether diagnosis is improving, but it is clear that early diagnosis is vital and that long-term pathways for treatment and care must be identified at an early stage. Only then can we provide the appropriate support that people desperately need and ensure that problems are noticed before they worsen.
We heard the statistics about lifetime extra costs and emotional strain on families. Joined-up provision is the vital key. PACE refers to the responsibility vacuum between the resources required and what is on offer from local education and health authorities. A common constituency problem we encounter is that of parents of autistic children who have no clear gateways—as the hon. Member for Erewash (Liz Blackman) said, they do not know to whom they should go. The polite term is "ambiguity around responsibility", but the real term is buck passing.
Often, there is a vicious triangle. How many times have we dealt with the local education authority first, then the local council's social services department and, finally, the primary care trust within the national health service? The need might be for speech therapists, social workers, or extra support in the classroom. It is so difficult to obtain one third of the funding from each of three bodies; in some cases, it requires a great deal of work, and the effort, time and money wasted in getting to that point is intolerable. That is the battle—the word on everyone's lips—in which we politicians have to engage.
Disaster can result if such efforts are not successful: the police may become involved, or mental health problems may arise. I know one mother who had her autistic son arrested for stealing the family car, simply to jolt the local authority into providing her with the help that she desperately needed. Children or adults with extreme cases of Asperger's may be sectioned under the Mental Health Acts or given inappropriate medication, which may trigger a downward spiral. The hon. Member for Ilford, North gave us the statistics: people with autism disorders are five times more likely to commit suicide, one in 30 people with autism has felt suicidal, and one third of autistic adults suffer from depression.
242WH Autism awareness year is important. A whole year is a good step up from the autism awareness week of previous years. Many events are planned. I pay tribute to the BIBIC for taking on the campaign and acting as facilitator, as well as to the Corea family—I am not sure how many times the hon. Lady mentioned her constituents—for the great determination that they have shown on behalf of their child. I am sure that the year will be successful and will bring enormous benefits for many thousands, perhaps tens of thousands, of families who have children with autistic disorders.
We parliamentarians can also take some credit, not only for the work of the all-party group, but for the 153 MPs who signed the early-day motion and for the support that we have had in the House of Lords. With the NAS and the 250 organisations that have added their support to autism awareness year, we can take some credit for raising the profile of the issue. Much else is happening besides the King's Fund conference on 14 February. The success of the year will be judged not by the number of people who turn up at individual events, but by its legacy of awareness among professionals and the public at large. That is what is important.
We must concentrate on five areas. The first is assessing the problem's extent, because we do not have up-to-date prevalence figures. There are too many differentials between counties'—let alone countries'—experiences, perhaps owing to different expertise and provision in different counties and their ability to assess the scale of the problem. We must have much better data and better ways of collecting and assessing data. There are different impacts at different ages in a child's development.
Secondly, we need to do more research into causes and to have a greater public awareness campaign. As the hon. Member for Ilford, North said, we need to dispel the myths. Unique among her colleagues, the Minister has been exceedingly wise and brave in indicating what she was prepared to do in terms of ensuring that her children have the MMR vaccination. Vaccination in parts of the country is down to 72 per cent., which may have an enormous impact. Measles is a killer. I have a 41-year-old constituent who suffered severe brain damage as a result of contracting measles at an early age. We need to educate the public much more, not merely flag up a possible link between autism and MMR. There is much more to it.
Thirdly, we need to do much better on early diagnosis. The average age for diagnosis of autism is six, four years after most parents seek help. We must treat early and provide suitable support to avoid regression into severe autistic behaviour. That is not necessarily difficult. The hon. Member for Chesterfield (Paul Holmes) mentioned the CHAT technique, developed at Cambridge university, which should be more extensively available.
Who takes the lead in spotting the signs of autism early? That is the problem. Is it the health visitor, the GP, other health or education officials or the specialist teacher when the child starts nursery or school? Often a family friend who knows a little about the subject notices something. I echo the comments of my hon. Friend the Member for Tiverton and Honiton: for goodness' sake, listen to parents—they know quite a lot, however emotional they may be when they turn up at a 243WH GP's surgery. In addition, it would be much more helpful if diagnosis were regarded as a signpost, not a label.
Fourthly, as my hon. Friend the Member for Isle of Wight (Mr. Turner) illustrated so clearly from his experience, there should be much better support at school, both in the classroom and on the way to and from it. The problem is that autism is a broad spectrum with a high diversity of need. Inadequate statements are often given, which lead to long wrangles through tribunals. Learning difficulty tags often apply only to people with IQs of less than 70, but we have heard that many people with Asperger's have higher and often above average intelligence. As my hon. Friend the Member for Tiverton and Honiton says, autism is an iceberg condition: at least two thirds is below the surface. We must tackle the enormous divergence in the experiences of LEAs and the availability of specialist teachers, particularly specialist speech therapists. We need many more special autism awareness units in mainstream schools, and we must strengthen the SEN code of practice.
Finally, we must provide support for the extended families and carers who deal with people with autism and who face the enormous emotional impact of doing so. The hon. Member for South Thanet talked about marriage breakdown; I have seen in my constituency how common that is, because of all the pressures. Furthermore, the economic consequences are severe. It is much more difficult to diagnose autism and Asperger's in adults than in children, because there are fewer contexts in which identification might occur, but only after diagnosis can suitable treatment be made available.
It is vital to support parents. The Sussex Autistic Society, with which I do some work, has get-togethers for parents and professionals. The children can be taken off their hands and entertained in specialist light and sound rooms, while the adults share their experiences. Training should be available for parents, and respite care is essential to give them a break from the constant pressure. We do not value carers enough, but we should make their job as easy as possible because they take so much of the burden off the state.
Today's debate and the work that will be done throughout the year are important to getting the message across to the public and increasing awareness of autism; only then will we be able to secure a co-ordinated approach. We must increase awareness among health and education officials and social services, and reflect the issue in employment policies. We need to reveal much more of the iceberg and to cut down the number of shopping bag ladies. Only after that has been done will we be able to have a debate that does not feature words such as "battling" and "patchy". The campaign has got off to an excellent start and I wish it well.
§ The Parliamentary Under-Secretary of State for Health (Yvette Cooper)I, too, congratulate my hon. Friend the Member for Ilford, North (Linda Perham) on securing a debate on this important issue in autism awareness year, and on voicing her constituents' concerns so powerfully. We have heard some passionate 244WH speeches from Members on both sides of the Chamber. They have extensive experience and expertise and they are right to feel very strongly about the issue. I also pay tribute to the all-party group: we often underestimate the influence and achievements of such groups. The all-party group on breast cancer, for example, has done a great deal to raise awareness of that condition.
As the hon. Member for Tiverton and Honiton (Mrs. Browning) said, autism has, in effect, been mainstreamed in the House of Commons and the House of Lords, and we need to do the same throughout society. Too little is known about autism, not only in society in general but among professionals and experts. During this debate, many important points have been made extremely well, and they should be followed up. The key themes that have emerged are the need for more and better research; improved diagnosis and early intervention; improved medical and professional recognition and understanding of autism; better partnership working among the various agencies that provide support for those with autism and their families; ways to tackle the patchiness of services; better support for and greater involvement of parents; and recognition of the individual needs of those with autism and their families.
It is important that we acknowledge that autism is a complex condition that affects not only the individuals with the condition, but their families, siblings, parents, carers, teachers and school mates. It is not a simple problem to which there are simple solutions. The Government warmly welcome autism awareness year. I pay tribute to the efforts of the Corea family, who are constituents of my hon. Friend the Member for Ilford, North, in getting it under way. I also pay tribute to the extensive work done for many years by the National Autistic Society in raising awareness and expertise.
Progress is already being made in respect of many of the themes that have been identified, such as improved multi-agency working, improved partnerships and research, and increased emphasis on early diagnosis. I shall mention a few of the measures that are already contributing to improving the situation of those with autism and their families, and highlight some of the next steps and key opportunities arising from autism awareness year, especially the development of the national service framework for children. In responding to some of the points raised by hon. Members, I shall point out the steps that are already being taken and the areas in which we need to go further.
Research was mentioned by the hon. Member for Chesterfield (Paul Holmes), among others. It is clear that we need to know more about the causes and prevalence of autism. That is why last year the Government asked the Medical Research Council to undertake a major and detailed review of current knowledge about autism, and to suggest possible areas of further research. NAS and PACE were involved in that work and I thank them for their contribution.
The MRC published the report of its detailed review on 13 December last year. It provides a clear, authoritative picture of the latest state of scientific research, and reflects acceptance of the fact that autism is not as rare as was previously thought, although it notes that the apparent increase in the prevalence of autism is likely to have resulted from better diagnosis and clearer definition, as well as from increased 245WH awareness. The report suggests that many factors play a role in causing autism, and that the strongest evidence to date is that there is a major genetic component. In line with other independent expert reviews, the MRC group confirmed that the evidence does not support a causal link between MMR vaccination and autism.
The fact that the MRC carried out the review considerably strengthens the case for fresh autism research, as does establishing a highlighting notice relating to autism and mapping out the key areas for the most fruitful research. I hope that strong research proposals will emerge in many of the areas that the MRC identified.
Many hon. Members concentrated on services for those with autism. An important first step is diagnosis. We heard about the need for one-stop shops and a single gateway to improve diagnosis and early intervention, and that must be the way forward. We must make it much easier for parents to navigate an often complex network of consultations surrounding diagnosis. In many areas that is done successfully, and one of the challenges is to ensure that best practice in those areas is adopted across the board.
We are taking a close interest in an independent initiative, the national initiative on autism, which is chaired by Professor Ann Le Couteur and is investigating screening, diagnosis and early intervention. It is expected to report this year and we will take its conclusions extremely seriously. The Department of Health commissioned Tony Holland to produce a report on Asperger's syndrome. That report includes recommendations on professional groups increasing their awareness, the need for health and social services to work together, and the need for population-based studies in adults and children to establish prevalence. Work is under way to implement "Valuing People" and to provide services for people with a learning disability, concentrating on improving co-ordination between agencies to supply the focused and individual services that people with learning disabilities, including autism, may need.
246WH Improvements are taking place in education. The revised SEN code of practice has been in place since 1 January, and the guidance on assessing the different areas of children's SEN specifically highlights autistic spectrum disorders. In 2002, the Department for Education and Skills autism working group will publish its good practice guidance, which will be important to raising awareness across education and improving best practice. The quality protects programme is also making a contribution.
§ Mr. Andrew TurnerWill the Minister give way?
§ Yvette CooperI am short of time, so I cannot.
The area that I want to focus on in the short time that I have left—I apologise for rushing through the issues—is the national service framework for children, which is just beginning its work and will consider not only health, but partnerships between health and social services and between health and education.
The framework will deal with every aspect of children's health; it will not be able to single out every condition and disease for detailed attention. However, the Minister of State, Department of Health, my hon. Friend the Member for Redditch (Jacqui Smith), and I have decided that autism is particularly important and we want to use it as an example of the way in which services should be provided. We want to make autism an exemplar under the national service framework, so that when the framework is concluded people will be able to see how services should be provided—usually through partnerships and covering many of the aspects that we have discussed today, including early diagnosis—to provide the best quality services for those with autism.
I strongly urge hon. Members with an interest in this issue to become involved in the debate on the national service framework for children. I have a strong regard for the national service framework because it is having a powerful impact on improving services and setting national standards throughout the NHS. It provides a great opportunity for those with an interest in autism.
I apologise for not being able to cover many of the matters raised, including issues relating to adulthood.
§ Mr. Bill O'Brien (in the Chair)Time is up. We must move on to the next debate.