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Autism

My Lords, I congratulate the noble Lord, Lord Astor, on initiating this very important debate today, and declare an interest as chairman of TreeHouse, an autism education charity that runs a school for primary and secondary school children with autism spectrum disorders in north London. Like the noble Lord, I declare an interest as vice-chairman of the All-Party Group on Autism. The noble Lord did not mention some of the tragic cases that have arisen as a result of the failure—indeed, absence—of respite care for families with autism, but it is quite clear that tragic cases, such as that of Alison and Ryan Davies, will occur unless these services are provided. It is part of the purpose of today’s debate to lay the ground for the Comprehensive Spending Review in the way in which the noble Lord described. Autism presents a unique challenge. Children with autism spectrum conditions have fallen through gaps in services, as they do not always fit entirely into one definition of need. For instance, they can fall through the gaps of eligibility for either learning difficulty or mental health services. Sometimes they fall into neither category. The breadth of the autism spectrum and the complexity of potential impairments mean that professionals often have little idea of how to meet the needs of people with autism. Even if we assume that an individual with autism succeeds in overcoming the barriers thrown up to access for an assessment, people with autism often find that the services on offer are inappropriate and inadequate, as the noble Lord described. They are inadequate in terms of quantity or quality, or both. The noble Lord referred in particular to respite placement. My colleagues at TreeHouse hear from parents all over the country. From the calls and e-mails that it receives, it is clear, and rather alarming, just how many families fight even to get an assessment of need. Once their needs are assessed, they are made to feel lucky if they are given just two hours’ respite per week or even per fortnight. These are families where the child needs care and surveillance round the clock. The child may sleep for only a few hours a night, may have no sense of danger, may be particularly fascinated by open windows or naked flames or may not be able to tolerate routine family activities, such as trips to local shops. The young person may be in need of social skills training in order to help them to access local leisure facilities or social networks, or to access the outside world that their typically developing peers take for granted. The absence of these services makes life a misery, prevents the inclusion of a young person in society and may inhibit his or her chances of long-term independence. TreeHouse also hears of cases where social services have said that there is no funding assigned or service available to enable a disabled child to stay at home with adequate respite and short breaks; none the less, money is available to support a residential school, or to place a child in care, which is at far greater human and financial cost. That is indicative of the systemic failure to support families of children with autism. It is the notion that, to get anything at all, families must slot into local authority practices and budget categories, whereas social care professionals should be anticipating need and responding flexibly and willingly to families. Training is vital. Parents with whom TreeHouse is in contact often report that the workforce is not equipped with strategies to support sometimes very challenging young people. Ordinary care staff find it difficult to address the profound communication and behaviour needs of children with ASD. TreeHouse knows of situations that have broken down after only the second two-hour session, where respite workers fail to show up after the first attempt, or when special leisure facilities report that they cannot cope with the young person with ASD. The challenges relate to the undifferentiated nature of current respite services. Often standard respite services are inappropriate. The NAS ““make school make sense”” survey in particular highlights the under-provision of social skills trainers tailored to young people with high-functioning autistic spectrum disorder/Asperger’s syndrome. Of course, many parents have had suspicion falsely cast on their parenting, and—even worse—there have been allegations of abuse, perhaps because of the unexpected behaviour of their children or even, perhaps, because the parents draw attention to the inadequacy of the services on offer. What is so sad about such cases is that they set up fear and cynicism among parents who become despairing about social services, frightened to ask for help and scared of being labelled. I am loathe to portray a situation that is all bleak, but life with autism is not easy. We should have a social care system that provides a proper, effective safety net and lifts temporarily some of the weight of caring for a person with autism. However, I believe that a significant problem has over the past few years been increasingly recognised, at least at national level, and at a slow but increasing level by local authorities. We now have the National Service Framework for Children, which contains a standard on disabled children and their families. We can take encouragement from a number of other initiatives, such as the joint Treasury and DfES cross-cutting review of children's services, which was recently launched at TreeHouse. These, I hope, are combining to create momentum for change. However, three key points need to be made. First, social care for families of children with autism must be made a priority for funding. As the Disabilities Trust said in a recent briefing, autism funding now often comes from a general pot under a heading such as ““learning disability””. It believes, and I agree, that this unique and complex provision should be recognised and that ring-fenced funding should be available. Without this, Government policies such as the NSF simply will not be implemented. Secondly, social care services need to be designed around the needs of individuals with autism and not made to fit into slots created by local authorities. Finally, specialist autism training must become mandatory for every member of staff and decision maker who works in social care. The recent report by Professor Gillian Baird in the Lancet showing that we now have one in 100 children on the autistic spectrum demonstrates that this is a growing problem that we need to tackle as a matter of urgency.