Why living with autism is a daily challenge

Apr 16 2008 by Our Correspondent, Western Mail

Karen Robson, disability service manager at the University of Wales Institute, Cardiff (Uwic), explains why more must be done to support adults with autism

FEELING a sense of belonging is something that many of us take for granted. Adults with autism, however, see life differently, leading to isolation and being routinely ignored as a report, titled I Exist, published by The National Autistic Society Cymru (NAS Cymru) recently highlighted.

As a campaigner for disability rights for over 11 years, I am all too familiar with the struggle faced every day by thousands of disabled people in Wales to lead independent lives and participate in society. For those with autism (including Asperger syndrome) access and equity are frequently denied to them due to a lack of essential support to meet their needs.

Identified in 1943, autism is a lifelong, developmental condition affecting the way the brain processes information. It occurs with varying degrees of severity and is characterised by a “triad of impairments”: difficulties with social interaction, social communication and social imagination. For the 25,000 people in Wales estimated to be affected by this spectrum condition, life can be a daily challenge to participate and to access services which could enable them to be independent. It can also have a profound effect on their mental health and create higher support needs in the long term.

As the NAS Cymru research highlights, 87% of adults rely on their family financially and 41% still live with their parents. The research further reports that over a third of adults with autism do not receive support because their local authority has no provision in place.

The report was based on the largest ever survey in Wales on the experiences of adults with autism and their families. It provides a stark message to policy makers and service providers to respond to their needs.

A starting point must require local authorities to accurately identify how many people are affected by this spectrum disorder to make sure that services are planned and delivered appropriately. Diagnostic services must be more widely available – it is not uncommon for parents to struggle to get their child diagnosed and 40% of those who responded to the NAS Cymru survey report that they were diagnosed over the age of 18, by which time difficulties can be more acute and difficult to address.

Many services are structured in ways that prevent individuals from benefiting from key support. Nor is support specifically tailored to the needs of children and adults. As one individual comments: “Social Services say Asperger syndrome is not a learning disability and not a mental health issue so there’s no specific support.”

Currently the Assembly Government Autistic Spectrum Disorder Action Plan, which is in its final stage of development, fails to specify local authority actions to respond to the needs of adults with autism. This is critical if adults are to be enabled to reach their potential.

In another recent report, The Needs of Adults with Asperger Syndrome (Beardon and Edmonds, 2007), the top three priorities reported by contributors which should be provided by local authorities were support in employment, help in getting appropriate accommodation and having access to social skills training. In many instances the only specific support that is available is from charities, leading to a wide variation in provision across the country. In Wales we look to the Welsh Assembly Government to provide leadership and guidance to local authorities and Local Health Boards – the ASD Action Plan is the golden opportunity to set the standards for the future, but its current form is woeful in addressing basic needs for adults.

As with any impairment, people’s experiences of having autism can vary considerably and support provision needs to reflect this diversity. In order to challenge disturbing statistics such as only 11% of adults with autism being in full-time employment, it is essential that support structures are developed to meet their individual needs. High unemployment rates can be offset by comparatively minimal investment.

Working in higher education, I firmly believe that education can be one key to the door of people’s lives. It opens up opportunities for employment, financial independence and to be exposed to new and challenging experiences. For some people with autism, undertaking a course of study at a college of further or higher education can be the first step on the road to achieving an independent life. Statistics from the Higher Education Statistics Agency confirm that some 475 people with autism are studying in higher education in the UK, and at Uwic we are supporting increasing numbers of students each year.

To reflect this emerging need in higher education, specialist support systems have been developed such as mentoring to enable individuals to pursue their chosen course. Feedback is positive, but support cannot end on graduation. To aid transition support must be coordinated to continue beyond university and this is what I call upon the WAG Action Plan to address. Children with autism grow up to be adults with autism. The NAS Cymru report I Exist voices loud and clear the views of adults with autism. The message is clearly, “Don’t ignore us any longer”.