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Improving lives through promoting understanding
Article Type: Guest editorial From: Tizard Learning Disability Review, Volume 16, Issue 4
The policy context in the UK is currently a supportive one for people with disabilities, including those with autism. International and national policy sets out the rights of all children and adults with any form of disability to enjoy a life in the community that is fulfilling, rewarding, empowering and dignified (UN Convention on the Rights of Persons with Disabilities (United Nations, 2006); UN Convention on the Rights of the Child (UNICEF, 1989); the adult autism strategy (Department of Health, 2010)). The Disability Discrimination Act (HMSO, 2005) requires all public bodies and agencies to make reasonable adjustments to allow the full participation of people with disabilities in society.
However, it appears that there is still some way to go to make change happen for all people with disabilities, in particular those with learning disabilities or autism. Whilst there is increased awareness of autism, this does not necessarily bring with it understanding of the condition and how to help people have better lives. The Autism Act (HMSO, 2009) and ensuing strategy highlighted the need, and mandated the requirement, for all health and social care staff to have at least awareness training in autism. The fact that full awareness, understanding and acceptance of people with autism as valued members of our community have not yet been achieved was illustrated only too vividly in the recent Panorama programme revealing abuse of people with learning disabilities and autism in a private hospital in England (http://news.bbc.co.uk/Panorama/hi/default.stm Undercover Care: The Abuse Exposed).
Providing relevant training at different levels is not necessarily difficult to do. Awareness raising and the provision of a basic understanding can be achieved proactively by including sessions on autism in the pre-qualification training of professionals across the range of disciplines and tasks. Raising awareness of those already working in the field is logistically more difficult but can be done at a local level, as it is in Jersey, for example. Those who will be working directly with people require more in depth training focused on supporting people. This type of training is more effective if it includes a hands-on component or at least a focus on the people the trainees support so that they can apply the knowledge in practice. One risk of a large-scale demand for training is that, without guidance as to what training should include, the content and methods of delivery might not be effective or consistent. This has resulted in the National Autistic Society and the Mental Health Foundation along with a network of other organisations and training providers to develop guidance and a code of practice for training in autism.
The focus of this special issue on autism is to make available and accessible to professionals working in the field of learning disability and autism, some of the knowledge base relating to autism, to help promote understanding at a more academic level. The issue will focus on four main areas relating to autism. The paper by Greg Pasco summarises diagnostic procedures and the research on epidemiology, reminding us that the generally accepted prevalence of autism spectrum conditions is 1 per cent of the population. That means that in most schools, colleges and large businesses there will be at least one person with autism, necessitating some level of awareness and understanding from those around them. Of course, as noted in the paper by Rachel Roberts, Julie Beadle-Brown and Darran Youell, autism may be over-represented in some occupations and under-represented in others, if people with autism find jobs that play to their strengths.
Some autism self-advocacy groups express dissatisfaction with the focus on intervention in autism on the basis that society should accept and respect differences. For many people and their families, however, finding ways to reducing the disabling effects of autism is a priority. The reality is that intervention in autism is often big business and there are many types of interventions available but very few with a strong evidence base. The paper by Richard Mills and Stephen Marchant reviews the literature on some of the most commonly used and researched interventions and concludes that more methodologically sound research is needed on almost all interventions currently available. In the meantime, Mills and Marchant argue that the focus of services needs to be on providing support for children and adults to reach their potential, despite their autism, using person-centred approaches, such as the National Autistic Society’s SPELL framework (Beadle-Brown et al., 2009; Beadle-Brown and Mills, 2010), person-centred active support, positive behaviour support and total communication.
Rachel Roberts, Julie Beadle-Brown and Darran Youell take this last point further and explore in detail some of the issues around the social inclusion of people with autism – policy and the knowledge of how to help people with autism be more included exists but yet, people with autism are still victims of hate crime and victimisation, bullying and are excluded by environments which make it very difficult for them to move independently around their local community, accessing services and facilities that the rest of the community access.
The final paper in the issue by Eric Emerson, Chris Hatton, Richard Hastings, David Felce, Andrew McCulloch and Paul Swift explores an issue that has received relatively little emphasis in the research to date – the health of people with autism. They identify a number of available sources of data which could be used to explore the issue of health needs of people with autism spectrum conditions.
Julie Beadle-BrownBased at Tizard Centre, University of Kent, Canterbury, UK.
Beadle-Brown, J. and Mills, R. (2010), Understanding and Supporting Children and Adults on the Autism Spectrum, Pavilion, Brighton
Beadle-Brown, J., Roberts, R. and Mills, R. (2009), “Person-centred approaches to supporting children and adults with autism spectrum disorders”, Tizard Learning Disability Review, Vol. 14 No. 3, pp. 18–26
Department of Health (2010), Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England, DH Publications, London
HMSO (2005), Disability Discrimination Act, 2005, HMSO, London
HMSO (2009), Autism Act, 2009, HMSO, London
UNICEF (1989), Convention on the Rights of the Child, UNICEF, New York, NY
United Nations (2006), Convention on the Rights of Persons with Disabilities, United Nations, New York, NY