This article was originally published in 2009 in a report by The National Autistic Society entitled Supporting adults with autism: A good practice guide for NHS and local authorities. Read the full report here.
Here is how some local authorities are gathering and analysing information about the numbers of adults with autism in their area.
Cumbria
In 2006 Cumbria County Council conducted a mapping exercise, after two of its autistic spectrum development groups (ASDGs) raised concerns about the increasing numbers of people being diagnosed with autism in the county. How would these people's needs be assessed and planned for?
The mapping exercise identified a 43 per cent increase in the number of adults with autism recorded in Cumbria, compared with an exercise carried out in 2003. The authority recognised that this figure probably didn't fully capture people with Asperger syndrome and high-functioning autism, who can find it harder to get a diagnosis.
Since the mapping exercise, Cumbria has developed a new electronic social care record system which includes people who have a diagnosis of autism. This should mean that the authority knows more about the numbers of people with autism accessing social care services – negating the need to carry out more mapping exercises. However, there is a recognition that many people with autism will not be getting social care support and as yet, Cumbria does not have a system for recording this population.
In 2007 Cumbria produced a report called Are we ready? This report followed a review that looked at gaps in service provision to adults with autism, and where things could be improved. The council's first recommendation was an acknowledgement of the growing numbers of people in Cumbria with autism:
Appropriate services need to be developed to be able to cope with the demand of this increase … all policies and procedures are inclusive to people with ASD [autism spectrum disorder].
Following the mapping exercise and the review, in 2008 Cumbria asked adults with autism and Asperger syndrome, their families and professionals, to rate services for all people with autism based on guidance documents, and to say what the authority was doing well. It also asked people to identify priorities for service development.
In 2009 Cumbria will publish an adult autism strategy for consultation. Key issues are likely to include social support, diagnosis, and transition. The local authority is leading on the adult autism strategy but health services are also involved and it is hoped the final strategy will be a joint one.
Surrey
Surrey's County Autism Project is led by the County Autism Group, which has representatives from children's and adult services, children's and adult health services, Connexions, specialist schools, The National Autistic Society, and parent/carer representatives. The project is working to make services for people with autism in Surrey more responsive and effective. It has set up a network of autism champions across the county, and created a strategy that will underpin future service development.
To inform the strategy, a mapping exercise was carried out to find the number of young people and adults with autism in Surrey. This found a significant increase in the numbers of people with autism in the county. Nonetheless, a large number of people will not have been identified. It is hoped that the Surrey Adults Linked Disability Registers will provide additional information about adults with autism, including those who do not receive services, in the future.
There is also information about the numbers of children and young people with autism in Surrey. This information has been used to create a commissioning strategy: specialist supported living services for young people who are making the transition to adulthood will be commissioned each year from 2008-2016. In the first year, Surrey commissioned services for 16 young people, and these have been well received.
Surrey's County Autism Project, which has also overseen development of new training programmes for council and primary care trust (PCT) staff, has been recognised as a good practice example in the Department of Health's Better services for people with an autistic spectrum disorder document.