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Autism

rose to ask Her Majesty’s Government what steps they are taking to provide support for the families of children with autism. The noble Lord said: My Lords, I start by declaring an interest as the father of a 13 year-old daughter with autism. The number of cases of autism diagnosed in the United Kingdom has increased tenfold over the past decade, and that has led to a growing recognition that support services are vital to people with autistic spectrum disorders and for their families and carers. Sadly, that has been illustrated by the recent tragedies. There is no known cure for autism, but much can be done to support people with the condition and their families. I will refer to autism but mean it to cover all autistic spectrum disorders, as there is a need for provision right across the spectrum. I wish to touch on the range of family support services, including respite and short breaks, shared care and childcare. Such services provide relief for both the carers and the child with autism and can help the child's personal and social development. Research has shown that trying to access services and entitlements during the early years is one of the major causes of stress affecting the family life of a child with autism. Three in five families report significant levels of psychological distress, which is more than twice as high as parents in general. Nine out of 10 of the children in a study had significant mental health needs or behavioural difficulties, which is twice the number of those with learning disabilities and 10 times more than children in general. If family needs are assessed from the first instant a problem is identified, and appropriate support and respite are provided, a great deal will be done to relieve this stress. Yet there are too many examples of failure to deliver such support. The All-Party Group on Autism, of which I am secretary, published a manifesto in 2003 that outlined a vision for autism services in 2013. Its objective for family support is that, "““support and training services will be available for all carers, siblings and families immediately following diagnosis””," and, "““multi-agency teams in every area will be able to provide accurate and sensitive information to families””." A similar vision is laid out in the National Service Framework for Children. The framework’s standard on disabled people states: "““Families are offered a range of appropriate family support services through multi-agency packages of care””." The framework also recognises the need for short breaks, which is particularly acute for the families of children with autism. It recognises that weekends and school holidays are crucial times for short-break services to be delivered. Sadly, the progress of the framework to date has been limited. I hope that the Minister will state that he and his department are still committed to seeing the framework delivered, and that he will be able to give an update on its implementation, particularly of the standard on disabled children and the autism exemplar. A recent audit of local authorities and a variety of stakeholders, which was commissioned by the Department for Education and Skills, emphasised respite services as a priority area with a gap in provision for children with autistic spectrum disorders. This was picked out as an area of high importance and low availability. Can the Minister advise the House on his department’s assessment of the report, particularly of the recommendations on respite and family support? There is further strong evidence that provision of specific types of family support services is insufficient. A survey by the National Autistic Society found that 70 per cent of carers of children with autism say they cannot return to work due to a lack of appropriate care facilities. Only 15 per cent had received any support from social services in their caring role. As I have already mentioned, short breaks are a vital service for children with autism and their families. However, 90 per cent of short-break schemes have waiting lists. Children with autism account for a third of all those on waiting lists. Such services are frequently not accessible to children with autism. The availability of appropriate childcare is a similar problem. The fact that the Childcare Act will pay particular attention to the needs of disabled children is certainly welcome, but there is concern that local authorities will not be able to meet the demand for the significant level of specialist childcare that would be needed for the families of children with autism to take up work. Respite services are needed at certain crucial times, such as during holidays, but, in another survey, almost all parents felt that this need was not being met. Ninety-three per cent of parents did not receive help during holidays, and 87 per cent requested a break from caring. One of the major barriers facing children with autism is a lack of trained professionals to support them. Training is required for all relevant professionals to improve the number and quality of facilities. Many providers of mainstream short-break services, and even of care for disabled children, feel unable to cater for children with autism. Over 80 per cent of service providers want more support and information about autism, and over 60 per cent said they required a specific training package. There is particular difficulty in providing for children with challenging behaviour. Similarly, from the parents’ perspective, understanding autism is the most important criteria in choosing a service for their child. Will the Minister outline what his department is doing to improve the awareness and understanding of autism among providers of social care and childcare? Investment in the workforce and in specialist services is a vital investment. Offering the right service at the right time can prevent families reaching crisis point. To provide services only in crises, on the other hand, is very costly to the local authority, not to mention extremely distressing for the family. Furthermore, failure to provide services for children with autism only stores up trouble for the future. Some families will continue to access few or no services. Many people with autism continue to live with their parents into adulthood. For others, the pressure will lead to family breakdown and longer-term residential provision. This is an issue of quality of life for both the child and the family. Without support, families can feel isolated and that they have no one to turn to. Where autism-specific services are provided, they usually work well. Social skills groups, for example, are a relatively low-cost initiative that not only develop the child’s ability to interact, but provide a regular activity for the child and help to prevent further difficulties. There are examples of good practice: working with the voluntary sector to provide guidance to families as soon as a diagnosis is received; the establishment of respite centres, which are attached to schools but are not only for the use of school pupils; and the provision of in-home support, giving parents a break while the child remains in familiar surroundings. Of course, establishing such services and centres requires investment. The Treasury review of children and young people is a golden opportunity to address these issues and to make recommendations for next year’s spending review to improve support for families with disabled children. I hope the Minister will consider carefully the issues that I have raised and give this important issue the priority it deserves.