asked Her Majesty’s Government what progress has been made in the development of a national strategy for autistic spectrum disorder; and what consultations they are having with the three devolved Administrations.
The noble Lord said: My Lords, I am grateful for this opportunity to speak about autism and am grateful to noble Lords who indicated a willingness to support me. I take this opportunity to thank all of them, especially those who manage to get in on this short debate.
I do not intend to speak about methodologies beyond declaring that my personal experience is that progress for more of those who are on the autistic spectrum can best be made through an eclectic approach; there is no easy, one-size-fits-all solution. Behavioural aspects, sensory difficulties and communication problems must be addressed together. Neither should aspects of co-morbidity be treated separately. We must get away from an approach that labels children and laboriously moves them from what I call one silo to the next.
That is why I want to ask the Government to rethink the provision and planning of autism services and to work to establish and accommodate within a national strategy the best of what is happening in England, in Wales, in Scotland and in Northern Ireland. The voluntary sector within the three devolved entities has found it beneficial to come together with the Irish Republic to establish an autism co-operative: the Celtic Nations Autism Partnership. However, the United Kingdom as a whole and we in this Parliament have an obligation to better manage procedures. Autism services are currently a postcode lottery. Those on the spectrum, their parents/carers and their siblings deserve better. Autism is a family issue.
I was asked in September last by Michael McGimpsey, the Health Minister in Northern Ireland, to chair an independent review of autism services. Without prejudice to what the review team will present within the next month, I want to define some of the shortcomings within our current system. In December 2002, Hall and Elliman published a report entitled Health For All Children—sometimes referred to as Hall 4—in which they endorsed screening and surveillance reviews of babies by health visitors soon after birth and then at roughly monthly intervals until 13 months. Thereafter, they advised only optional contact with parents and “assessment where required” at two years, with nothing further until three to five years.
Now I ask: “assessment where required” by whom? Is that by a first-time mother, with no baseline against which to make her judgment, or by parents in denial that something is not quite what it should be with their child? In Northern Ireland, a previous Chief Medical Officer issued an instruction based on Hall 4, which was:
“Formal universal screening for speech and language delay, global development delay, Autism, and post-natal depression is not recommended”.
I stick my chin out: she and Hall 4 were wrong on this point and that guidance should be amended at once.
There is an irrefutable need for early identification of autistic tendencies, which can be evident when a child is between 18 months and two years. Such identification needs to trigger immediate intervention services concurrent with immediate early assessment and diagnosis. No longer should we have waiting lists that, according to the last Written Answer I received, can be anything up to three years. Those vital three years can never be retrieved. They will be crucial as to whether those with ASD achieve the best possible life outcomes or are destined not to reach their potential.
My number one proposal is that a two-year structured home visit by a health visitor must be put in place and the current two-year optional visit, with better purpose, must be put back until 30 to 33 months. Let me try to define, in real terms, what that involves. Available epidemiological data suggest a prevalence of ASD of around 90 per 10,000 births. With roughly 750,000 births per annum in the United Kingdom, that means about 6,750 children may come on the ASD register each year. Allowing for initial incorrect suspicion, adding, say 25 per cent, we will have closer to 8,500 children referred for specialist assessment and diagnosis. My review group has calculated that specialist diagnostic services will require about 18 hours per child, on average—some more, some much less.
In terms of scoping out diagnostic/assessment service capacity, additional capacity must be factored in because of, first, the backlog of cases currently on waiting lists and, secondly, the potential cohort of older, as yet undetected, cases that are still to arise and present to services; we also—thirdly—need provision to cater for Asperger’s syndrome, which can become apparent in those between five and 10 years of age. On that basis, our review has identified an immediate need to have 13.3—forgive the 0.3—whole-time equivalent specialists for our 1.75 million population in Northern Ireland; for the UK, we would be looking at a figure of around 480 whole-time equivalent specialists.
Should we achieve a situation where we effectively cater for every child as efficiently as is humanly possible through early identification, early assessment and early intervention, I could not promise any reduction in specialist services—there is a huge deficiency in adolescent and adult services. However, I do not have time to deal in detail with transitional services and the transfer of meaningful data across departments. Primary education will necessitate teachers and classroom assistants who are “autism aware”. Some, in both these areas, are outstanding, but too many are, bluntly, “unaware”. In my 23 years in the classroom, I would have been one of the latter.
But I have a good news story. I have, during the past six months, visited teacher training colleges the length and breadth of Ireland to discuss what is needed in respect of autism-specific modules. In the true spirit of cross-community co-operation, the principals of our two colleges, St Mary’s and Stranmillis in Belfast, have responded with a working team, planning just such a teacher training provision for the start of the next academic year. This will be factored into existing special needs courses. It is an enormous leap ahead and I am very grateful to principals Peter Finn and Anne Heaslett.
I hope that others will refer to transition and data transfer in a more comprehensive manner than I have time to address—I refer to the transition to secondary and tertiary education and the transition to adolescence and adulthood, where, invariably, those with disability are currently left to fall off the precipice at 18 years of age.
Much can be achieved by a better-directed use of current capabilities and resources. But if we are to have equality of opportunity for those with ASD, we must systematically begin to organise along the lines that I have just outlined. We must have a proper blueprint for action that is properly benchmarked, so that there is accountability within every administrative sector and sub-sector—especially, but not exclusively, within health and education.
My number two proposal would be that, if we cannot achieve consistency and efficiency by persuasion, the Government must legislate specifically for autism. I hope that that will not be necessary.
During my research I have found the most caring parents, the most dedicated individuals within the health service and an enthusiastic voluntary sector—probably the best informed and most aware element of all—but each is searching, competing and despairing as it tries to function in a chaotic system in which government departments are yet to enforce cohesion. There is neither cross-cutting nor co-ordination. Sub-sectors must stop protecting their precious little corners and operating in silos.
I do not want to overrun my time; I simply ask the Minster whether the Government will study our comprehensive review of autism services and seek to give us leadership on this vital issue. Perhaps we could then have a longer and more detailed debate as we plan how quickly and effectively we can move forward.
My Lords, I thank the noble Lord, Lord Maginnis, for securing this important debate on a national strategy for autism.
Autism is no respecter of national boundaries. Its impact is felt by families, carers, people with autism and those who work with them. It is clear that the more we can work together at a cross-national level to share our ideas, policies, skills, experience and knowledge, the greater the chance we have of meeting the challenges of autism that we face within our own nations.
It is therefore highly commendable that the national charities of Wales, Scotland, Northern Ireland and the Republic of Ireland have formed the Celtic Nations Autism Partnership. This Celtic partnership takes a strategic approach to autism within the voluntary sector and serves to engage with the devolved Governments in the UK on autism far more effectively than ever before.
May I bring to the attention of noble Lords the capacity-building towards autism, which is currently being undertaken in Wales? In Wales today, 60,000 people are affected by autism—that consists of those who have autism, their families and those who work with them. The Welsh approach to autism is very strategic.
Autism Cymru, the Welsh autism charity, first inspired, and then worked in partnership with, the Welsh Assembly Government and others to establish an all-age Welsh Assembly Government strategic action plan for autism, which is due to be implemented from April; that is the first of its kind by any Government in the world. In September this year, Autism Cymru, in partnership with the UK research charity Autism Speaks and Cardiff University, is setting up the Wales Autism Research Centre and a chair in autism. This initiative has been supported by the Welsh Assembly Government among others. These are just two out of several examples, which inspire great hope for the future.
The Celtic nations countries have been bold in their approach and are taking the lead in terms of a strategic outlook and practical developments for autism. The message is clear: Governments need to develop long-lasting and consistently applied strategies and policies for autism. I therefore ask the Minister to ensure that the Government expand their vision and engage with the devolved Governments and members of the Celtic Nations Autism Partnership, and start planning for the future as a matter of urgency.
My Lords, I congratulate the noble Lord on bringing forward this debate, which is on a subject of great importance.
I worked many years ago with Professor Sir Michael Rutter at the Maudsley Hospital. He is one of the earliest experts in this field. I had the opportunity to work with the National Autistic Society in my former constituency at one of its residential institutions in Godalming and, more recently, I have been professionally involved with TreeHouse. That remarkable charity, which is chaired by our colleague, the noble Lord, Lord Clement-Jones, provides education for parents and professionals and an advocacy service for people affected by autistic spectrum disorder. I was also pleased to hear the noble Baroness refer to Autism Speaks—that wonderful charity raises money for research and is led by Dame Stephanie Shirley, who is a remarkable, fearless and persistent champion of this cause. Already Autism Speaks provides as much as half of the Medical Research Council funding for autism research, which is a reflection of the inadequate recognition of this very important issue. Perhaps half a million people are affected by autism spectrum disorder—one in 110 children—and are in a situation that needs some form of attention.
I commend to the House the recent report by TreeHouse suggesting that the aggregate annual cost of supporting people with autistic spectrum disorders is around £27.5 billion; £16.25 billion is for services, £10 billion for lost earnings—either for the individuals or their families—and £1.25 billion is for family expenses. If only there was better diagnosis, more appropriate support and better understanding much of that cost and suffering could be reduced. I support those who say that now is the time to look towards a national strategy with increased funding for research into the causes, the diagnosis and the treatment of autism, thus bringing forward the development of effective therapies.
We need to mandate early development checks on young children that look for signs of autism, and I endorse the comments made by the noble Lord and by David Cameron about the importance of health visitors. We need clear standards for diagnosis, access to early intervention and goals for educational services. It is not acceptable that there are 6,500 fewer state special school places now than 10 years ago. In that time, 147 special state schools have closed, yet these are children who it is extremely difficult to integrate in mainstream education. We need to improve professional training and set standards for social services provisions that recognise the lifelong nature of autism. We need to establish employment support mechanisms specific to autism that allow people with autism to find work that exploits their strengths rather than exposes their weaknesses. We need to monitor and encourage, if not enforce, national standards of provision.
Now is a timely moment for this debate, which is so overcrowded that we have all had to condense our comments not to just a minute, but to three minutes. I hope the Government will take seriously the messages from it and will act.
My Lords, I congratulate the noble Lord on securing this debate. I shall make some brief comments from my experience over the years in general practice in community health, as chair of social services in my borough and from my time as a ward councillor and a Member of Parliament. I am sad to say that in all those roles I met many constituents with children in the autistic spectrum and the children themselves, of course. There was poor provision then as now, despite the Government's worthy statement of intent in 2006 entitled Better Services for People with an Autistic Spectrum Disorder. The combination of difficulties in social interaction, communication and social imagination is notoriously difficult to pick up in the milder cases that are sometimes thought to be due to poor management of the child by the family, which can lead to a big delay in diagnosis. There is often confusion about who is best able to deal with the problem, and the lack of joined-up working between health services, education and mental health services needs to be addressed urgently. There are still many areas in this country with no designated person for autistic spectrum disorder advice and support, let alone a team. As the noble Lord, Lord Maginnis, said, we need teachers in every school who have had training in recognising this disorder.
Last week, I was disturbed to hear a senior forensic expert at Scotland Yard call for recording the DNA of children who may be at risk of falling into criminality. If that happened, I wonder how many children with an autistic spectrum disorder, who did not have educated and battling parents supporting them and demanding treatment and care, would be seen as just naughty, antisocial and unresponsive, and be marked as future criminals and recorded as such.
Every area needs a clear strategy and varied facilities for children with ASD, as we have heard. We needed them 20 years ago, and they are still lacking. Finally, I wish to put in a plea for the many families, and mothers, in particular, who have a child with a severe form of autism. It often means family break up: the father leaves because he cannot stand the stress and siblings become difficult and often frightened. If I had time, I could relate many cases where that happened. Mothers face a lifelong commitment to a child, and subsequent adult, with whom they cannot communicate and for whom they can do very little to help. In concentrating on provision for autism, let us not neglect the rest of the family who need so much support.
My Lords, I too am grateful to my noble friend for inaugurating this debate. I join him in pressing the Government to take seriously an overall strategy for the whole of the United Kingdom. However, there are certain difficulties. It is generally quite helpful and illuminating to talk about people on the autistic spectrum, but there is a huge difference between those at the severe end and those at the milder end. Overall, in the United Kingdom, autistic people at the severe end are, up to a point, well looked after educationally in special schools or special units. It is those at the milder end—the Asperger's children—with whom I am particularly concerned, as they really suffer.
We have often been told, especially by my noble friend Lord Rix, who is not in his place, not to muddle up mental illness and special educational needs. In general, I am sure that is good advice, but in the case of people suffering from Asperger's syndrome, the distinction may come to seem artificial. The special needs of the Asperger's child, while consisting of sometimes patchy and unequally distributed abilities, lie more crucially in the area of social and emotional intelligence. That child's inability to understand other people, their conventions, their jokes, their metaphors and, above all, physical contact with them makes his life in a mainstream school often little short of torment. In turn, that very often leads to severe depression, self-harm and general anxiety symptoms. When she replies, I would like the Minister to tell the House whether there is any progress on setting up small schools where an Asperger's child will be known to all the teachers and where he will know all the teachers and the other staff. I am convinced by all the schools that I have visited, which are many, that that is the only educational environment within which such children, often eccentric, often highly gifted, but living in a state of constant anxiety, can genuinely feel part of the school and included. I would also like to know whether there has been an increase in the number of special schools that specialise in this disability.
Finally, I call your Lordships' attention the extreme difficulties that autistic spectrum adults find in getting treatment if they also suffer from depression or obsessive or anxious behaviour. They seem to fall between the responsibilities of the medical and the social services. Nowhere is co-operation between the services more badly needed.
My Lords, I thank the noble Lord, Lord Maginnis, and support his call for a national strategy. I declare my interest as a trustee of Autism Speaks UK, and I commend the words of the noble Baroness, Lady Bottomley, about Dame Shirley. She is a unique champion. I am the mother of Shamim Uddin, and I have talked about him before. It is that experience that colours all my opinions on this matter. I should say how wonderful it is to perceive so much common ground across the Floor on this. We have been complementary to each other's arguments, which has made for a strong debate. I take this opportunity to commend the UN Secretary-General and the General Assembly for launching the first World Autism Awareness Day on the recommendation of Qatar, and I congratulate Qatar on leading it. I am confident that such events will be a further catalyst to changing some of the experiences of more than 60 million people with autism around the world, particularly the 500,000 or so people in the UK.
I am like a broken record in that I want to restate what great strides we have made. It would be remiss of me not to commend the Prime Minister, Ed Balls and, of course, my noble friend Lord Adonis for their consistent attention and support on this issue. However, the fact remains that we have to acknowledge that, as has already been stated, huge disparity prevails in parents trying to access education, health, specialist speech therapy and respite care. There is some excellent provision, as the noble Baroness, Lady Bottomley, mentioned—TreeHouse is a fantastic example—but such facilities are few and far between. These benefit primarily children and in no way translate into provision for adults. After my last Question in the House, I was inundated with letters and e-mails explaining to me in detail how many parents are continuing to struggle with adult sons and daughters. Time does not permit me to acknowledge some of their experiences. However, I would like to acknowledge and reiterate my support for the efforts of Ivan and Charika Corea, the parents of 12 year-old Charin Corea, who launched the autism awareness campaign in 2000.
I would like to see the Chinese wall dismantled where parents continue to suffer from disjointed services and a postcode lottery. This is nothing new, but we seriously need to address the inequality of provision, particularly for those over 18. Therefore I remain persistent in my call for an autism task force which will provide us with a better rationale for a 10-year strategic plan. On this occasion, I rest my case and ask my noble friend the Minister to say whether we can expect this from her and whether she supports the call for a national strategy.
My Lords, I declare an interest as the father of an autistic daughter. Like the noble Baroness, Lady Uddin, that very much dictates my views on autism.
I believe that more could be done at both a national and local level to help people with ASD and their families and carers. A strategy along the lines of the learning disability White Paper, Valuing People, would be a significant step in ensuring that people with autism receive the support that they need.
I am concerned by new findings from the National Autistic Society. Its report, I Exist, showed that almost two-thirds of adults with autism do not have enough support to meet their needs. More than nine in 10 parents were worried about their adult son’s or daughter’s future when they are no longer able to support them. One of these parents, a mother of an adult daughter with autism, expressed her concern about the future by saying:
“My daughter has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we’re gone?”.
I am sure that we all feel for this family and for families like them. I hope we can also be united in our agreement that there is an urgent need for the Government to take action to help transform the lives of people such as these.
We still do not know how many adults there are with autism in the UK as there have been no prevalence studies into the number of adults with autism. This lack of information has a negative impact on the planning of services. Seventy-seven per cent of primary care trusts do not keep a record of how many adults with autism there are in their area and 86 per cent of local authorities say that if they had more information about the number of adults with autism in their area it would help with long-term planning.
I would be interested to hear from the noble Baroness whether the Government have carried out any research into the number of adults with autism. I would also like to hear how the Government intend to ensure that adults with autism are explicitly included in the joint strategic needs assessment that local authorities and primary care trusts are now required to produce.
The NAS report highlighted the desire of local authorities and primary care trusts for assistance from the Government to help them to support adults with autism. I am pleased that the Government issued Better Services for People with an Autistic Spectrum Disorder in 2006. However, that publication only clarified how existing government policies applied to people with autism. It did not attempt to produce a coherent strategy to meet the needs of people with autism.
Even after the publication of Better Services, 98 per cent of local authorities and 100 per cent of primary care trusts said that the Government could provide them with more guidance and assistance to support adults with autism. This near universal demand for more support highlights that the Better Services report is not in itself sufficient in tackling the social exclusion experienced by adults with autism.
My Lords, I thank my noble friend Lord Maginnis of Drumglass.
The impact of having a child with autism is not understood by many, including professionals who are responsible for providing services for autistic children and their families. Parents are often blamed for failing to discipline a child when in fact they are doing their very best. Unthinking remarks made when parents are exhausted and at the end of their tether are extremely hurtful. Organising life around a severely autistic child who has no verbal communication, rarely sleeps and who has to be watched every moment is more than most of us could cope with. Parents of such children have my admiration and respect and deserve all the practical and emotional support that society can provide.
Parents usually know what helps their child most. Often they are not listened to. There is a sub-group of autistic children who suffer extremely painful inflammatory bowel disease. Many children cannot express their pain in words, but parents know that their child is suffering dreadfully. Children who can explain their symptoms are often ignored. I have many letters from distraught parents who describe their experiences in doctors’ surgeries and clinics. Some of these letters are so harrowing that I wonder how members of the medical profession can be so callous. It can take many months, or even years, for an accurate diagnosis to be given. Parents trail from doctor to doctor, here and in the USA, in an attempt to obtain relief for their sick child. Very often it is in the States that a diagnosis is made and medication prescribed.
These children are sometimes difficult to examine and may wreak havoc in a surgery, but there is no excuse for a doctor’s refusal to listen to a troubled and exhausted parent or to examine a child who is reported to be sick. I ask the Minister what advice she would give to parents who find themselves in this predicament. It should not be necessary for them to mortgage their homes or to borrow from relatives in order to go to the USA for definitive treatment.
Some parents have found that their child’s symptoms are relieved by dietary changes. Anecdotal evidence indicates that a gluten-free or a casein-free diet may be particularly helpful for some autistic children. However, it is expensive. Until the science catches up, is there any reason why gluten-free or casein-free foods should not be prescribed for children who are shown to benefit, as they are for coeliac patients?
While provision for children with severe autism is far from perfect, there is a crevasse into which they fall when they reach adulthood, as other noble Lords have mentioned. There are very little, if any, social services or medical support, and respite care seems a distant dream. The whole family lives in the constant fear of what will happen if the parents die before the child. Society already marginalises them and few have a support network of friends and relations. There is an urgent need for structured provisions to be made to support autistic people throughout their lives and the lives of their parents on to their own demise.
As we have already heard, change is an anathema to many autistic people. Time is necessary to enable them to build a relationship with a new person or group. They should be confident that the emotional, social and physical support does not disappear at crucial moments in their lives. We know that proper provision in Wales, Scotland and Northern Ireland is progressing apace. Will the Minister tell the House what progress is being made in England?
My Lords, I, too, am grateful to my colleague, the noble Lord, Lord Maginnis of Drumglass, for initiating this debate on autism services today.
The shock of discovering that one has to deal with autism is all too often magnified by the sense of hopelessness that results from trying to deal with disparate and detached agencies. The Audit Commission reported five years ago on autism. That report stated:
“We found: a lottery of provision, dependent on where people live, and how hard they can push for the services they need; too little being provided, too late, with long waits for information, equipment and treatment; a maze of services, that frustrates and confuses families; and pockets of good and innovative practice, and service champions”.
Little has changed, and that is why the current review being chaired by my colleague is so terribly important. One matter that I know he proposes, but obviously did not have time to speak about tonight, is his “one-stop shop” concept.
Autism spectrum disorder can necessitate working with social security services, speech therapists, occupational therapists, paediatricians and psychiatrists. Doing all that and trying to cope, a parent may indeed have to give up work. There is all that to begin with, and then, depending on the degree of co-morbidity, there is liaising with other medical disciplines. Later there may be a similar need for additional liaising with others in the educational sector.
Would the Government be sympathetic to a concept where local government would equip and provide six to 10 facilities with phones and computer terminals, where direct links could be established and co-ordinated with specialists and consultants who themselves may be scattered around clinics, hospitals and offices? This is a nightmare for any young mother. I have seen mothers having to trail around to social security offices where the young person at the desk has not even heard of autism. Voluntary groups could be contracted to man such centres, as could retired experts. There is a huge wealth of talent out there waiting and willing to be utilised. The noble Lord, Lord Maginnis of Drumglass, said that there is so much good will out there, willing to help and just wanting to be asked. That could happen in every town with a population of, say, 15,000 to 20,000, and could be established to meet local needs. It is essential to have a single point of refuge and help for families under this pressure, and such a facility could have a host of other multidisciplinary uses. Finally, would the Minister be willing to investigate how this could be set up and made to work for the benefit of the many?
My Lords, we must thank the noble Lord, Lord Maginnis, for bringing this subject to our attention and hope that we can go into slightly more detail at some later point because, due to time, I am afraid that we are skating over the surface. I will take some of the background here as read, as other noble Lords have covered it. I will simply quote and paraphrase a small section from the policy summary on page 15 of Better Services for People with an Autistic Spectrum Disorder. It goes on about who is responsible for helping a person, asking:
“Does the person have: An eligible need for support? A diagnosed, or undiagnosed, mental health need? (Mental health services should take financial responsibility)? A learning disability? (Learning disability services should take financial responsibility). A physical disability or sensory impairment? (Physical disability services should take financial responsibility)?”.
The silos that the noble Lord talked about here are brought beautifully forward. The next part says that they should pool the resources and pay for it. That is the administrative equivalent of water going uphill, and everyone here knows it. Everyone here knows that organisations defend their budgets. We would like to hear how big a stick the Government are going to take to these organisations, because there does not seem to be a carrot in the world that will make them do it.
Moving on to the National Autistic Society’s document I Exist, I will go back to the examples that the noble Lord, Lord Astor, spoke about. Ninety-eight per cent of local authorities and 100 per cent of primary care trusts said that they needed more guidance. Let us go through that again. We shall take the call for extra funding as read in both cases. Some 81 per cent of local services wanted more training and professional development—75 per cent of the primacy care trusts. Of primary care trusts, 88 per cent want specific guidance. It is only 64 per cent for local authorities.
It is clear that those bodies that have to administer this system do not think that they have the tools available. Can the Government give us some description of what they are doing to bring these bodies together? If the Celtic fringe has an example of better practice, when are we going to implement it? The most depressing part of this is the incredible similarities between the struggle to get the right help to the right people in this group—those with autistic spectrum disorder—and every other description that I have heard about any group with a disability. It is the same every time social services come to dyslexia, which of course is the one that I know best, although the conditions are almost diametrically opposed in some aspects. The administrative chase is almost the same. Have the Government not learned enough to be able to avoid that at least?
My Lords, let me say immediately to the noble Lord, Lord Maginnis, that I have very considerable sympathy for his case. We are dealing here with a condition—autism—on which the corpus of knowledge remains exceedingly slim. That very basic point argues, in my book, for a sharing of best practice and a joined-up approach to policy-making, based on the best available evidence. This is not to question devolution; it is to highlight the need for strategic consistency in an area where services are patchy and the cost to the nation enormous.
Policy-making on services for autistic people straddles departmental boundaries. It straddles the boundaries between government and the voluntary sector—let us remember that much of the voluntary sector operates UK-wide—and between different local authorities. I pay tribute to the Government in what they have done to pull together the various strands of policy and good practice in this area. In November 2006, the Department of Health published Better Services for People with an Autistic Spectrum Disorder, which encourages those in the health and social care fields to develop local action plans to meet the needs of older children and adults with autism. There are other initiatives too, at a national level, which we can applaud: good practice guidance, the inclusion development programme and transition support for the over-16s.
Local priority-setting based on guidance is right. The question that the noble Lord, Lord Maginnis, is asking is whether, on a matter like autism, it is enough. In January, he asked the noble Lord, Lord Adonis, whether the Government would support the Celtic Nations Autism Partnership, which is trying to create a joined-up approach to service provision across administrative boundaries. The answer that he got was that:
“If there are lessons that we can learn for practice in England, we will do so”.—[Official Report, 16/1/08; col. 1293.]
Again, that is fine, but it slightly misses the point, which is not simply whether England has something to learn from the devolved Administrations, but whether we can usefully share our own knowledge and best practice with them.
The “I Exist” campaign by the National Autistic Society is based on the finding that nearly two-thirds of adults with autism in England do not have enough support to meet their needs. Some 76 per cent of teachers said that the lack of appropriate professional development is a barrier to teaching children with ASD. These are the sorts of reasons why TreeHouse and the Autism Awareness Campaign run by Ivan and Charika Corea have campaigned so vocally for the kind of strategic approach that the noble Lord, Lord Maginnis, is asking for. The big question for the Government is whether the collaborative joined-up way of working, which they urge on others, is something that they themselves are willing to embrace at a national level. I hope that the Minister will treat the idea seriously.
My Lords, I begin by thanking the noble Lord, Lord Maginnis, for initiating this debate and other noble Lords and Baronesses for their contributions.
Autism is devastating, leaving autistic people isolated and their families afraid for their future, and it is a condition about which not enough is understood. I know that this fact will be highlighted on World Autism Awareness Day on 2 April. My noble friend Baroness Uddin, among others, has been active in campaigning for the Government to take even more action, urging us to consider a national strategy and taskforce.
One point I think that we can all agree, and it has been eloquently expressed by the noble Lord, Lord Maginnis, is that early diagnosis and early intervention is increasingly being recognised as very important for improving the outcomes for children and into later life. I learnt this, in particular, when I worked for ICAN, the organisation that works for children with communication disabilities, including autism.
Mentioning all the considerable work that is going on and answering all the questions raised in the debate will be difficult, but I shall do my best and write to noble Lords if necessary.
The noble Lord, Lord Maginnis, the noble Baroness, Lady Tonge, and others mentioned early years. The 2002 guidance includes pointers to good practice on early years. The special educational needs code of practice promotes early intervention. Under the Education Act 1996, local authorities can make provision for children up to their second birthday and, where necessary, must assess and draw up special educational needs statements for children from that birthday onwards.
The Early Support programme is the central government mechanism for improving the consistency and co-ordination of services for young disabled children and their families across England at national, regional and local level. Included in the information that Early Support makes available to parents is information for the parents of children who have just been diagnosed with autism or who are being diagnosed. The autism information booklet for parents was drawn up with the National Autistic Society and TreeHouse. It has been revised again in consultation with NAS and TreeHouse. According to the latest figure that we have, more than 75,000 copies have been distributed. The joint National Health Service and DCSF exemplar sets out what should happen in early years, describes what joined-up support should be necessary and takes us on the journey that a child and their family should follow.
The DCSF is providing £200,000 over three years to the National Autistic Society to help parents whose children have recently been diagnosed with autism, so that NAS can offer one-day as well as six-session courses. The NAS has found that people from rural areas—for example, fathers—have found it difficult to attend the six-session courses. The programmes provide parents with an overview of autistic spectrum disorders; strategies on improving communication; guidance on educational rights and access to services and benefits.
As my noble friend Lady Gale explained, work is certainly afoot in Wales and the other Celtic nations. We welcome the opportunity to be involved in the consultation on the strategy being taken forward by the Welsh Assembly. I have stated that we are in discussion with Welsh Assembly officials and will monitor closely the implementation of the strategy to see what lessons may be learnt. England and the devolved Administrations are involved in the European Agency for Development in Special Needs Education. The group has a chance to discuss autism provision at the European agency level.
I turn to services for children with ASD. The Department for Children, Schools and Families has a well established programme to improve teachers’ skills in meeting children’s special educational needs, including those with autism, and we are working with partners to bring about improvements—there is no doubt that that is necessary. In November last year, Ministers launched the Autism Education Trust, which is being established by the National Autistic Society, the TreeHouse Trust and the Council for Disabled Children. I know that the noble Lord, Lord Clement-Jones, has been closely involved with TreeHouse. The DCSF has given the Autism Education Trust £160,000 in the current financial year to help it become established. The trust aims to involve all those from the voluntary, independent and statutory sectors who have an interest in autism education and to promote improvements in it.
Children with autism and their families will also benefit from more than £430 million of funding for the Aiming High for Disabled Children Programme. In particular, it should bring about improvements to the provision of short breaks and the transition support programme mentioned by several noble Lords.
Moreover, this Government are committed to independent living for all disabled adults, including those with autism. Independent living is an important part of enabling disabled people to attain equality and social inclusion, to fulfil the roles and responsibilities of citizenship and to have choice and control over the way they live their lives.
The Office for Disability Issues launched a cross-government independent living strategy on 3 March. The aim of the five-year strategy is for disabled people, including adults with autism, who need support in going about their daily lives to have greater choice and control over how the support is provided. It aims for disabled adults to have greater access to housing, education, employment, leisure and transport opportunities, and to participation in communal and family life.
In 2006, the Department of Health published Better Services for People with an Autistic Spectrum Disorder, which improves guidance and points to better provision for adults with autism. I am delighted to say that the department’s specialist adviser on autism, Sarah Austin, will be one of the advisers on the beacon scheme on independent living for disabled adults. I am pleased that she is also working with the department to produce guidance for professionals who commission services for adults with ASDs. This will be published in the coming months. It is important to remember that commissioners in mainstream services have a role in this.
Research was mentioned. I am pleased to report that the Autism Research Co-ordination Group’s first annual report states that autism research funding should be focused on identifying the gaps around biomedical research, interventions in research—especially in adults—quality of life and economic impact.
The noble Lord, Lord Maginnis, raised universal screening. The national autism plan for children drawn up by the Royal Colleges of Psychiatrists and of Paediatrics and Child Health did not recommend universal screening, because, at the time of writing it, they felt that screening instruments were not precise enough.
The noble Lord quite properly raised teacher training. We have a programme to improve teachers’ and early-years providers’ skills in meeting children’s special educational needs, including those with autism. We are working with partners to bring about improvements. The next phase of this programme, beginning in April, will focus on ASD.
The noble Lord also asked how many specialists there are. We do not collect the data centrally, but there should be a multidisciplinary team in every locality with an expertise on autism, including Asperger’s, as was recommended in the autism exemplar to which I have already referred.
The noble Baroness, Lady Bottomley, referred to the closure of specialist schools. Decisions on closures are made locally and not by central government. Closures need to be balanced by the opening of other units or provision. During the last few years, 18,000 children have been in such provision, receiving behavioural, emotional and other support. Autism is a significant part of this provision.
The noble Baroness, Lady Warnock, mentioned children with Asperger’s and whether there are enough local schools. As she will know, it is up to local authorities and voluntary and independent groups to decide on new provision for children with autism. Guidance last year encouraged local authorities to develop a range of provisions to meet the range of children with disorders. The Autistic Spectrum Disorders—Good Practice Guidance also recommends this range of provision.
The noble Lord, Lord Astor, asked what happens to adults on the ASD spectrum. He quite rightly raises the need for greater co-ordination locally and the problems of transition. There is no doubt that more work needs to be done and more pressure brought to make sure that there is greater uniformity of provision.
This debate would not be complete were I not to mention some of the organisations who work so hard for autistic children and adults. The National Autistic Society recently launched its adult campaign, “I Exist”, and Ivan Lewis, Minister for Care Services, spoke at the launch. In researching this debate I read the study of the economic impact of autism kindly sent to me by Dame Steve Shirley, whose support for research is both remarkable and far-sighted. I agree with the noble Baronesses, Lady Bottomley and Lady Uddin, on that. The Government welcome the report on the economic consequences of autism in the UK as a useful contribution to the body of knowledge. I had the privilege of visiting the TreeHouse school last year and pay tribute to its pioneering work, both for the children in the school and across the piece as a national champion. I would certainly like to receive the review of the noble Lord, Lord Maginnis, and will make sure that it goes to the right places for consideration.
I hope I have been able to reassure noble Lords of this Government’s continued commitment to improve the response that autistic children, adults and their families receive. There is much more to do—of course there is. We all need to continue to strive to deliver a modern, responsive social care and education system that supports people with autism and to make sure that they have greater choice and control in their lives, greater empowerment and the ability to lead fulfilling lives.