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Autism

My Lords, I congratulate the noble Lord, Lord Astor of Hever, on obtaining this important debate. I begin by declaring an interest as vice-president of Autism Northern Ireland and as someone with personal experience of the condition known properly as autistic spectrum disorder—ASD. I endorse the points made by the noble Lord, Lord Astor, and plead with the Government to recognise before it is too late that a major and growing problem is facing us. To fail to address the consequences of the huge escalation in autism would be a tragedy. Forget those who say that the increase derives from a new awareness, because that is simplistic. I started teaching in 1958 and I know what I experienced then compared with what happens now. For some, we are already too late: I refer to those children and young adults for whom there has been no early assessment or early intervention. In Northern Ireland, that situation still exists to a significant degree. There, I regret to say, I come up against the most devious and obstructive administrative attitude imaginable. The bureaucracy is confused, inept and evasive to the point of irresponsibility. From the earliest realisation that is a child is autistic, families are left to struggle virtually alone in conflict with an ill informed system. I intend to illustrate this opinion within the context of Answers that I have received to parliamentary Questions. This is about the lives of vulnerable young children and their families, and it is about time the matter was properly aired. First, I want to acknowledge one major change for the better. Until recently, autism was categorised as a ““mental disability””. To be defined thus was a huge inhibitor to the proper facilitation of those with ASD. But the Secretary of State, Peter Hain, has declassified the condition as such, which has given huge encouragement to many families. However, I should also point out that ASD is not a learning disability and needs its own classification. I quote from the 2001 Review of Autism Research by the Medical Research Council and, in so doing, I define autism more accurately as, "““the name given to a set of neurodevelopmental disorders in … the way that a person communicates and interacts with other people””." It is, "““characterised by qualitative impairments in social, communicative and imaginative development"." The condition most often becomes noticeable in children around the age of three. Between the ages of three and seven or eight is a crucial time inthe learning curve of a person's life. Language, experience and social awareness are accelerating at an enormous rate. Where there is this inhibitor—autism—the developmental loss can be devastating. Hence early assessment and early intervention are crucial. In a letter dated 30 June, I was assured by the Secretary of State that: "““Health Boards and Trusts ... are charged with commissioning and delivering local services on a permanent basis to meet the needs of their local population"." But let us look at what one finds when it comes to children right on the verge of those five vital learning years—three year-olds who show signs of being autistic and who urgently need to be assessed. In reply to a Question for Written Answer, I was told on 31 December last year that some 686 children in Northern Ireland were waiting to be assessed, some for up to 35 months. Let us think about that. It means three out of those vital five years at the beginning of school life—three years without the necessary one-to-one classroom assistance that can totally transform an autistic child’s life. I am now told that that figure of 686 children awaiting assessment has been revised down to 652. If one can even believe that, we have a reduction of a mere 5 per cent in six months, a rate of resolution that in theory could mean the backlog not being resolved until 2016. How many children’s futures will be blighted in the interim? On assessment, we find the greatest deceit of all.I ask noble Lords to take note of these dates. InJune 2005, I was told: "““Information on the number of children referred for suspected autistic spectrum disorder assessment and the current waiting times for assessment are not collected centrally and could only be obtained at disproportionate cost””.—[Official Report, 8/6/05; col. WA 90.]" Yet a mere six days later I was told: "““The Department of Health, Social Services and Public Safety’s priorities for action 2004-05 required boards and trusts to establish multidisciplinary diagnostic, assessment and early intervention teams to provide for improved life outcomes for around 200 children and young people with autism each year””.—[Official Report, 14/6/05; col. WA 119.]" If the statistics were not available on 8 June 2005, on what basis were such measures able to be planned and sanctioned over two years earlier, to be implemented by March 2004? Can I be blamed for believing that someone is systematically distorting or concealing the facts? In reality, despite the 2004-05 departmental requirement, two years later only seven trusts, out of four health boards and 18 trusts, have established these teams. I was then told that: "““Multi-disciplinary early intervention teams to deal with autistic spectrum disorders are drawn from paediatricians, psychiatrists, educational psychologists, nurses, early intervention therapists, speech and language therapists, occupational therapists and social workers””.—[Official Report, 20/6/06; col. WA 67.]" Eight separate disciplines are involved, with paediatricians rightly coming first on the list. But I subsequently discovered that in the western board area: "““There is no full-time consultant paediatrician for children with autism””." The situation in the southern board area is that: "““At present a locum is acting in the position of consultant community paediatrician””." Why are there such deliberate attempts to deceive me and why is the shortfall denied? Again I shall quote: "““Boards and trusts were required to establish multidisciplinary diagnostic assessment and early intervention teams to improve the life outcome for an additional 200 children and young people with autism across Northern Ireland. This target was achieved by the boards and trusts by September 2005””.—[Official Report, 12/7/06; WA 118.]" But the other facts that were provided deny that. Throughout all this bureaucratic and administrative chaos, Autism Northern Ireland has for 16 years helped those with ASD by providing advice and support to parents. It has been trying to encourage a co-ordinated approach by the health and education departments but has been constrained and obstructed at every turn. While we at Autism Northern Ireland do not pretend to have all the answers, sadly and through personal experience we know a great deal more than most.