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Autism

My Lords, my interest in this Question comes as a result of the involvement of a close family member who is a trustee and governor of Prior’s Court School for autistic children near Newbury in Berkshire. I add my thanks to those given to the noble Lord, Lord Astor of Hever, for introducing this short debate. Understandably, the focus of attention and resources is mainly directed towards those children affected by autism, whereas it is on the whole their families who bear the brunt of the burden of care—both practical care in looking after an autistic child and in navigating through the difficult and unfamiliar world of bureaucracy to ensure that the appropriate type of education, and related funding, is available and forthcoming. Indeed, many parents are forced to resort to home schooling when all other options are exhausted, with little or no opportunity for trained teacher input. I should like to concentrate on three specific areas, and in doing so will almost certainly repeat points made by other noble Lords. First, there is the difficulty of obtaining continued funding from local education authorities. This is particularly relevant where there is a change in the needs of the child, identified by progressive assessments, which require new or more specialist—and therefore more expensive—provision. LEAs often view these matters in black and white whereas they are of course many shades of grey. Taking an initial assessment as a firm indication of a child’s educational needs for their entire schooling can be a gross oversimplification. This can result in a box-ticking exercise which provides a rigid and unrealistic framework for ongoing education, a point already made by my noble friend Lord Clement-Jones. Parents need LEAs to be much more involved with specialist schools to understand the nuances and complexities of individual cases. While recognising the financial challenges faced by LEAs, parents often have to resort to expensive legal action to compel LEAs to meet additional costs. In fact, the whole statementing process seems to be designed to make life difficult for parents and to be infinitely less supportive than it should be towards those who are looking after what are often very difficult and disturbed children. Since there appears to be no contingency for reassessment, parents become desperate and often a battle with the local LEA ensues. Have the Government any plans to address this unsatisfactory situation? My second point is the difficulty of obtaining disability living allowance where the criteria for those on the autistic spectrum is not made as clear as it should be. One parent of an 18 year-old told me that in her experience the service had deteriorated markedly since job cuts were made in the Department for Work and Pensions last year. Is there meaningful monitoring of the advice callers are receiving and is the Minister satisfied that the system is working properly, particularly in the light of the increasing numbers likely to need this benefit in the future? Perhaps at the same time the Minister might update the House on the current take-up of DLA in general. At this point I should declare an interest as a recipient of this benefit myself. Finally, I turn to a very different point: the lack of emotional and psychological support for parents when autism is diagnosed in their child. Typically, autism is diagnosed from the age of three years old, as we have heard. For parents, such a diagnosis can be devastating and currently there is no substantive psychological support to help them come to terms with their child’s newly discovered condition. It is only when they come into contact with other families in a similar situation that they get in touch with support groups, which can help them accept their child’s condition and the related implications. Are the Government considering ways in which families of autistic children can gain access to counselling support at the time of diagnosis? Furthermore, can the Minister say how much additional funding is available for self-help groups for families who find themselves in this situation? To illustrate the point, in a recent conversation I had with the parent of an autistic child, she—not I—used the word ““changeling”” to describe her child. If a child developed a more life-threatening condition there would be sympathy from official agencies, but those whose children change from bright, outgoing individuals when they are toddlers into withdrawn and difficult, albeit greatly loved, children, tend to receive no sympathetic support. It is estimated that there are more than half a million people in the United Kingdom on the autistic spectrum and a recent report claims that the number of children affected in this country is one in 100, a figure higher than previously thought. If this incidence was pertinent to any other childhood illness—for example, chickenpox—it would be treated with much greater urgency. Even before this latest estimate it was calculated that 2 million people were directly affected by the impact of autism, many of these family members who are often the invisible sufferers. This number will grow exponentially with the growth in the incidence of autism. It is to be hoped that the Government will continue and, indeed, reinforce their commitment to monitor all aspects of this condition in the light of this alarming increase, including research into its causes, financial support for sufferers during their lifetime and last, but by no means least, proper support and help for the families concerned. I await the Minister’s reply with interest.