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Autism

My Lords, I am sure we are all grateful to the noble Lord, Lord Astor, for prompting this important debate. I know that the noble Lord has personal experience, and I pay tribute to the work he has done through his involvement with the All-Party Group on Autism. From my time as a director of social services, I understand and appreciate that having a child with autism can add phenomenally to the normal stresses and strains of family life. For children with autism, the world can appear a mystifying and frightening place. They can react with challenging behaviour so that their parents can barely take their eyes off them for a moment. I understand these issues; supporting autistic children and their families is a responsibility that the Government take very seriously indeed. A number of noble Lords asked how many children we are talking about. We recognise that the size of the cohort of children with autism and their families seems to be growing. Fifteen or 20 years ago, the standard prevalence rate for children with autism was thought to be four to five per 10,000. A report we commissioned in 2001 from the Medical Research Council on the epidemiology and causes of autism found some agreement with recent prevalence estimates of 60 per 10,000 of children under eight with autism spectrum disorder. I am aware of the research mentioned by the noble Lord, Lord Clement-Jones, undertaken by Dr Gillian Baird—whom I know personally—published in the Lancet last week, on the prevalence of autism spectrum disorders in children in the south Thames region. This is an important piece of research: it found a prevalence rate of around 40 per 10,000 for autism and 77 per 10,000 for the full spectrum. This is much closer to the prevalence rate that the National Autistic Society has suggested. The south Thames study suggested that much of the increase in the number being identified on the autism spectrum can be put down to greater awareness, better identification and a broadening of diagnostic criteria. However, it looks as though this is a true rise in incidence, a possibility which cannot be ruled out. I am sure that this new prevalence information will be helpful to colleagues in the Treasury and the DfES who are conducting the cross-cutting review. Like other noble Lords, I am aware of some tragic events involving parents and their autistic children, and I take this opportunity to express my heartfelt sadness and sympathy to all those involved. We must ensure that parents of children with autism can access services in their own right and that their needs are properly considered. I think particularly of the mental health problems that can be triggered by caring for an autistic child and the feeling that one is coping alone with no support, points to which a number of noble Lords have drawn attention. We are trying hard to make sure that services are in place to help. Community mental health teams offer specialist assessment, treatment and care to adults with mental health problems in their own homes. They may also provide a whole range of community-based services, or be complemented by other community-based teams providing specific functions, such as those of assertive outreach teams. Parents need to know that the services exist and feel able and comfortable to use them. In 2001, we published an evidence-based guideline to help GPs and other health and social care professionals know more about the most effective treatments for particular conditions. We also published in 2001 a booklet for service users and carers, Choosing Talking Therapies?, to help them know which questions to ask. We have embarked on a new programme to provide more effective and timely access to psychological therapies by connecting interventions currently or potentially available in the workplace, in primary care and other community resources, and to provide rapid access to more specialist services for those who need them. We are working on two demonstration sites in Doncaster and Newham, and on a network of smaller regional projects in this area, which will bring together key programmes in the NHS, the voluntary sector and local employers to test various models that could be implemented nationally. They will be of help. We have learnt from parents that a break from caring is very important to them, as a number of noble Lords have mentioned. That is why we introduced the carers grant. It is worth £185 million in 2005-06. Children's services account for approximately 20 per cent of the grant, including services for carers of children with disabilities. As parents, we all know that however much we love our children we would sometimes welcome a break from looking after them. We also know how important an uninterrupted night’s sleep can be. How much harder that is for the parents of a disabled child who demands much greater effort and energy from his or her parents and where alternative care or babysitting arrangements are harder to come by. We know that some of the children most likely to be waiting for short-break services are those with autistic spectrum disorders. The report in March from the Shared Care Network, Still Waiting, reconfirmed this. There are many reasons for the difficulty in recruiting short-break carers, but we are making some progress. The proportion of children who are waiting to receive services has decreased since 1999: it is now about a third rather than a half. I do not want to claim that that is a great achievement, but it is a movement in the right direction. This is far better than it was, but it is far from being good enough. DfES recently published the National Audit of Support, Services and Provision for Children with Low Incidence Needs, which included children at the severe end of the autistic spectrum. It confirmed that family support and respite care are the biggest issues that need to be addressed for families of children with autism. However, it gave some examples of good practice where things are working well. For example, a Northamptonshire local authority provides an autism family support team of five which works in the family home and community outside nine-to-five hours and gives access to short breaks of three to four days. We need to build on local examples of good practice like this and have all parts of the country providing these services. Northamptonshire and others have shown that it can be done. It is about the will which exists at the local level to make some of these things happen. What is required is more and better partnership work between professionals and agencies to help families. A number of noble Lords have drawn attention to this. A good example of how these partnerships can improve matters is the DfES-funded West Midlands SEN Regional Partnership, which has focused on autism. Over the years, the partnership has mapped provision for autistic children and their families in the region, produced a parent information pack to support parents and, last month, a training policy and framework for those in education, social care, health and the independent and voluntary sector. As a number of noble Lords have said, more professionals and more agencies need to understand the needs of parents of children with autism and provide services that meet people’s needs, rather than trying to squeeze people into the framework of services that are available. Areas such as the West Midlands have shown that one can make progress where people choose to work together. We need to encourage that. The noble Earl, Lord Howe, drew attention to research. We accept that good quality research is critical. Following the Medical Research Council’s report which I mentioned earlier, my department gave £2.5 million to the MRC for autism research. With further funding from the Chief Scientist’s Office, Scotland and the MRC, this amount has been topped up to more than £3 million. Six major research projects are now funded. One of them is a£1.3 million pre-school autism communication trial. This is the first large-scale intervention study of its kind and it will look at the effectiveness of a treatment to enhance parent/child communication and the social and language development of the child. It is too early for there to be lessons to learn from these projects, but we are keen that research in this area informs policy. An autism research co-ordination group has been established, hosted by DfES, which will publish its first annual report at the end of this month. The aim of the group is to keep Ministers aware of current research activity and its policy implications and to highlight gaps in current research activity. There is now a raft of policy initiatives across government for improving services for children. Noble Lords have drawn attention to some of them. One of the exemplars published under the National Service Framework for Children was on autism. It set out an optimal pathway for a boy starting at age three and moving from initial concern, through multi-agency assessment and diagnosis, an ongoing family support plan and early educational intervention, and on through transitions from primary to secondary school and into adult life. Led by the local primary care trust in Islington, a project has been running to implement parts of the exemplar around clarifying the diagnosis and identifying needs for the families. We need to learn the lessons from what has been a largely successful project. This is a good example of that exemplar being tried out on the ground. The Early Support programme is a joint DfES, Sure Start and Department of Health initiative. It is the central government mechanism for achieving better co-ordinated family-focused services for young disabled children and their families. The programme produced a series of disability-specific booklets, including a parents’ guide on autistic spectrum disorders in 2004. This was produced with a great deal of help from the National Autistic Society and a group called the Parents Autism Campaign for Education, which is now part of the TreeHouse Trust, of which the noble Lord, Lord Clement-Jones, is the chair of trustees. He has done a great deal of important work in this area to which I pay tribute. The guidance gives information to parents about autism and getting help, and it is available from the DfES Publications Centre. We know that more than 46,000 copies have been distributed and are being used. We have increased the amount of money being spent on children’s social services. I do not have time to go through a great deal of this, but I draw attention to the DfES’s provision of funding to Contact a Family, a national charity providing support, advice and information to families with disabled children. This has been of great help to Contact a Family, which has been able to double the number of families it reaches to 18,000. An external evaluation found that 99 per cent of respondents were satisfied with the service. I am not in a position to respond to the important points raised by the noble Lord, Lord Maginnis, but I shall draw them to the attention of my right honourable friend the Secretary of State for Northern Ireland. This has been an important and valuable debate. I shall take away the points to which I have not been able to provide an adequate response and write to noble Lords.