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58% still of people with autism in Wales say they believe that the diagnostic process took them too long, with 10% of those diagnosed in the past two years saying that they had been seeking a diagnosis for over 10 years
- only 26% of parents and carers of people with autism in Wales say they had been given a carer’s assessment - and of those who have, only half (52%) say that they have received support as a result
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30% of adults with autism in Wales say they don’t know where to get the support they need and 12% say they have been homeless at some point in their lives
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59% of parents and carers of people with autism in Wales say that a lack of timely support had resulted in higher support needs in the longer term.
In 2010, we consulted with people affected by autism across Wales, including people on the autism spectrum, parents, carers and professionals, in a series of focus groups and an online survey. The results showed that whilst there is good progress is being made across Wales, some major barriers to support remain, including:
- a lack of available services
- a lack of training for professionals
- an inflexible system
- people not knowing how services can be accessed.
We have used this research to produce a report called The Life We Choose: Shaping Autism Services in Wales. The report looks at four key areas which people felt were most in need of change: diagnosis, education, support for adults and support for parents and carers of people with autism. It is informed by many of the stories which people shared with us.
As one parent explains:
We have had to fight for every service [my son] has used ever since we moved to Wales... Without us as his articulate, persistent parents I do not know what would have happened to him. He has everything he has now because we have fought enormous and stressful battles on his behalf throughout his life. Others have not been as fortunate.
In 2008, Wales became the first country within the UK to have a Government strategy on autism – the ASD strategic Action Plan, which outlines how the Welsh Assembly Government and local agencies in Wales will seek to meet the needs of people with autism and their families. Although The Life We Choose is not an evaluation of the ASD Strategic Action Plan, it couldn’t be more timely in trying to ensure that Government at all levels continues to prioritise autism. The report also contains a number of examples of emerging practice, to share good ideas across Wales.
If you live in Wales, you can help by asking your Assembly Member to read our report and to promote the requirements of people affected by autism in their work in the National Assembly.
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The Life We Choose: Shaping Autism Services In Wales