Geoffrey Maddrell, Chairman of Research Autism

Presentation to the Falling Through the Cracks Conference, 16th July 2009

Text of Presentation

In my presentation I need to bring to life the critical and disturbing issues facing adults with autism and the urgency for comprehensive action. In the process I shall be introducing the conference and the other speakers.

Whilst we and others have been trying to bring these issues to the attention, particularly of policy-makers, their importance has at long last been given focus by the National Audit Office in their recently published report on how adults with autism are simply not being supported. The critical problem is lack of knowledge, which is not anyone's fault in particular but is one which must urgently be addressed. Children with autism are largely abandoned by specialist services once they reach 18. Thereafter, lack of support and repeated failure to integrate, results in a large proportion of adults with autism falling into the mental health net, for example; and who knows what happens when parents die. Over 80% of local authorities simply do not know how many adults with autism live in their areas. What is even worse is that the vast majority of front-line professionals such as GPs do not know how to recognise autism and are themselves quite naturally concerned and seeking training. The result is that, instead of preventive support to help many lead reasonably independent lives, there is an inevitable tendency for unsuitable and expensive responses when things reach crisis point. Let alone the human cost, the economic cost to society is estimated at an enormous £25.5 billion for adults.

The starting point has to be research: into how many are affected and what is happening at each transition point; into what interventions work or do not work, especially at the preventative stage; and into how to help autistic people to become part of society through employment, mentoring etc. This has to be the priority; otherwise how can you plan capacity and appropriate interventions when you do not know what is happening on the ground. In short, I shall be signalling some responses and action points, which lie at the heart of the rationale for the conference, and setting out where research needs to play a part.

Finally, I shall be emphasising that, however successful we are in the years to come in helping those on the autistic spectrum to adjust to life's demands, they will remain different; and imploring that all of us, namely society at large and not just policy makers and service providers, must make the adjustments needed to allow those on the spectrum to become full members of society.

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