The Government must tackle the Autism challenge

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.

Lord Clement-Jones (Liberal Democrat Culture, Media and Sport spokesperson)

Speech in the House of Lords

Debate on Autism

Thursday 20th July 2006

[NB. This is an edited version of Lord Clement-Jones's speech. To read the full speech, including interventions, click here.]

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. They are inadequate in terms of quantity or quality, or both.

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.

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.