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Autism

My Lords, no one is better qualified than my noble friend Lord Astor to speak on this extremely vexed and emotive subject. I congratulate him on having summarised so well the problems that all too often beset the families who struggle to live with autism in their midst. I completely agree with all that he and other noble Lords have said about the lack of adequate support services for autistic people and their carers. The National Autistic Society has a great deal to say about those shortcomings, which nowadays apply right across the country. As an Opposition spokesman, I am regularly contacted by anguished parents whose attempts to obtain the correct help for an autistic child have continued for many months and sometimes even for years. Not infrequently, those efforts end in disappointment and failure. Lest there be any doubt, autism is no longer an issue that can remain on the fringes of policy-making. It is a mainstream and very serious concern; it needs confronting, and it requires resources. What do we need to be doing? My noble friend mentioned a number of practical steps, such as making sure that needs assessments are available to all those who require them—they are not at present—providing more and better respite services, and appropriate childcare. I often think that one of the worst aspects of living with an autistic child is the isolation. The need for people to feel that they are not alone in having to contend with the sometimes unbearable stress of daily living in such circumstances is very real. Parents desperately want their predicament to be understood; they desperately want advice and recognition. The trouble is, the number of professionals sufficiently qualified to provide such help is inadequate, and teacher training does not include enough about children with disabilities. The noble Lord, Lord Addington, was absolutely right about that. Indeed, so widespread is the ignorance about autistic spectrum disorders that if a child presents at school with behavioural abnormalities associated with autism, it is often the quality of parenting that falls under the spotlight, rather than the needs of the child. Instead of understanding and help, parents find themselves referred to the child protection unit of social services. Even where a child has been statemented for special educational needs, local authorities will often fight tooth and nail against providing the support that is needed. I agreed wholeheartedly with the noble Baroness, Lady Thomas, on that topic. Research by Brunel University involving 750 parents found that most of them viewed dealing with LEAs as a confrontational exercise and that the whole process was a source of extreme stress. Parents are stressed enough without that. We really should be worried by research findings such as those. The Government say many of the right things about the importance of meeting the needs of children with SEN, but the reality is quite different. A few days ago, the Education and Skills Committee in another place published a report. Its view, which I share, is that special schools are invaluable for many pupils with behavioural and learning difficulties. Yet the number of special schools went down by 7 per cent between 1977 and last year. This reduction has occurred at a time when demand for SEN services has gone up dramatically. The committee made several trenchant criticisms of the Government: the lack of clarity about what is meant by the word ““inclusion””, a fundamental confusion which has directly resulted in the closure of special schools; the lack of clear strategic direction about the value and the role of special schools; and the complete failure to address the flaws in the SEN system identified by the Audit Commission in 2002 and by Ofsted in 2004. The Audit Commission and Ofsted both pointed to serious inconsistencies in provision, inequality of access to schools, over-complexity in the statementing process and poor outcomes. Here we are in 2006, and we are no further forward in these areas. The committee says that where good practice exists in local authorities, the level of parental satisfaction improves greatly. That is wonderful, but if it is so, the obvious questions to the Government are: who is spreading this best practice, and if it is not happening, how best should it be made to happen? Again, the White Paper Our health, our care, our say says a lot of good things. It speaks of local councils and the NHS working together to provide joined-up care plans for those who need them. It speaks of offering support for carers, including emergency respite care. How will those good aspirations be targeted towards children and young people with autistic spectrum disorders, and what precisely is being done to implement them? We are living in a time of real financial stringency in the health service and local government. But if we believe that families should be entitled to respite care when they need it; if we believe in streamlining the statementing process; if we believe in placing weight on the preferences that parents express in favour of special schools, then these things need defining explicitly and they need to become universal. In the longer term, what will be of most benefit to families and those afflicted with autism is getting closer to the science. The causal mechanisms behind ASD are not known. I have seen a recent Written Answer about research funded by the MRC in this area. How much of this work is directly related to the possible causal mechanisms and to treatments which may ameliorate the worst manifestations of autistic behaviour? This work desperately needs to be done. I am sorry to say that the controversy over the safety of MMR, which I find deeply regrettable, has tended to overshadow the more open questions that we should be asking. What, precisely, is damaging the brains of young children at an early age? Why are the numbers of autistic children going up as steeply as they appear to be doing? What can we do to relieve sufferers and their families from the extreme distress and despair that they feel? Until we make autism a mainstream health issue, we are bound to see a repeat of tragedies such as that of Alison Davies and her son. The lack of support, the absence of advice and the dearth of understanding cannot be allowed to continue.