Research realities: Autism support in adulthood

Three developments in the autism field should put people with the condition at the centre of policy and practice. Bob Hudson assesses a National Audit Office report, a Department of Health consultation and the Autism Act 2009, passed earlier this month

The Research

The National Audit Office (NAO) report, Supporting People with Autism through Adulthood, examined the effectiveness of support services to adults with autism and their carers. The study, published in June, assessed the range of services that might be needed by people with autism, including health and social care, education, benefits and employment. A multi-dimensional approach to data-gathering was used, with most of the fieldwork being undertaken in late 2008 and early 2009. This included:

● A survey of local authorities requesting data from both themselves and their NHS partners on identified need, strategy and planning, expenditure and service provision for people with autism.

● An online survey of 1,000 GPs in England covering the numbers of patients presenting with symptoms of autism; referral pathways; and the type of support available to them.

● A survey of disability support officers in further and higher education institutions in England, covering their experiences of supporting students with autism.

● Telephone interviews with third sector organisations in the UK that provide services for adults with autism.

● Twelve focus groups exploring the views and experiences of adults with autism and their carers, in partnership with the National Autistic Society.

● Interviews with government officials to establish the position on policy and strategy for people with autism.

Findings

The report found that available data covering the number of people with autism using services was limited, so it was difficult to draw conclusions. It suggested two key areas where service effectiveness could be improved.

● Better strategy and planning. This would be based on good information and raising levels of knowledge and awareness of the nature of autism and the potential needs of people with the condition. Achieving this could require significant changes to existing service delivery arrangements, with the creation of new roles and new ways of joint working between organisations.

● Better targeted support for people with high-functioning autism/Asperger’s syndrome. Such people may not be eligible for the learning disability services available to people with low-functioning autism, and may also be unable to access other support services unless they have a physical disability or a mental health problem.

The report recommended action to improve outcomes for adults with autism in three main areas.

● Organisations responsible for supporting people with autism need better awareness of the number of people with the condition in order to plan services, and to measure how effectively services are meeting needs.

● Service providers need a better understanding of what autism is and of the range of potential needs of people with autism to enable them to meet those needs more effectively with targeted services.

● Better targeted specialised provision for adults with high-functioning autism/Asperger’s syndrome, both diagnostic services and post-diagnostic support. This could lead to improved quality of life for people with autism and their carers and improve the cost-effectiveness of service provision.

Analysis

The NAO report coincides with several other major developments in the field of autism, notably the publication of good practice guidelines by the Department of Health in April, and the DH’s consultation, A Better Future: A consultation on a future strategy for adults with autistic spectrum conditions.

The latter closed in September 2009 and will inform the DH’s final strategy for adults with autism, due to be published next spring.

Finally, the Autism Act, which has received royal assent, puts the government’s strategy on a statutory footing.

The best way to make sense of the NAO study is to place it within this wider context. Looking across all these publications and initiatives, recurring themes emerge which are central to improved policy and practice:

● Professional and public misunderstanding: A key theme of A Better Future was social inclusion with an aspiration to ensure “all adults with autistic spectrum conditions are treated as equal citizens, and are fully and appropriately supported to fulfil their potential”. However, understanding among the wider population is low, leading to intolerance, discrimination and isolation. More worryingly, professionals themselves were said to show limited understanding.

● Poor policy focus and inadequate leadership: The DH’s consultation paper raised concerns over the lack in many areas of a local lead individual or team to take responsibility for ensuring that needs assessments are carried out, and for developing services and support. This can result in people with an autistic spectrum condition falling into the gap between mental health and learning disability services. The NAO survey reveals that most local organisations do not have a specific commissioning strategy for adults with autism.

● Insufficient access to services and support: This was probably the most documented concern, and covered most areas of public policy. There is little statutory guidance that specifically relates to the provision of services for people with autism, but many general policies can apply. However, the government has recognised that some people who need services fall through the gaps created by traditional service boundaries.

● Poor experiences of transition to young adulthood: The DH consultation paper noted “substantial concerns” about the transition from children’s to adult services, with a greater need for person-centred planning that avoids “last-minute” transition. The issue also figured prominently in the NAO report, where incredulity was expressed at the failure to plan ahead.

● Failure to personalise support: The DH consultation paper expressed concern that many adults with an autistic spectrum condition do not have holistic support plans that meet their unique needs. There were also concerns that assessment processes for the allocation of personal budgets could be too inflexible to reflect needs accurately, and that access to advocacy could be difficult. The NAO was enthusiastic about the potential of personal budgets for people with autistic spectrum conditions but said it would need careful management, including advocacy, brokerage and mentoring services.

● Inadequate data collecting and forward planning: There is little agreement about the incidence of autism nationally or in localities – a reflection of the fact that there is no specific routine data collection across the country (by local authorities or the NHS) on or about people with autistic spectrum conditions.

The way forward

The government vision set out in the Better Future consultation paper identifies several key themes: social inclusion, health, choice and control, awareness raising and training, and access to training and employment.

It is unwise to expect too much in the short term. The consultation paper deliberately avoided setting out recommendations about what needs to change and how those changes could be achieved.

In the meantime there is the Autism Act which gained royal assent on 12 November and commits the UK government to publishing a national strategy for autistic adults in England by 1 April 2010. This started off as a private member’s bill, drafted by the National Autistic Society and sponsored by Conservative MP Cheryl Gillan, but in effect became a government bill when ministers decided to amend it to incorporate its forthcoming strategy.

The Act requires government to produce guidance for local authorities and the NHS covering the provision of diagnostic services, the identification of adults with autism, assessments of need, service planning, transition planning for young people, staff training and leadership.

The strategy will have an impact assessment of costs, but the danger is that it will be delayed and then overtaken by the general election and the possible squeeze on public spending afterwards.

For the first time the needs of people with autism are at the centre of the policy and practice stage, but it is worrying that this is happening at such a difficult time in the political and economic cycle.

Bob Hudson is a professor at the School of Applied Social Sciences, University of Durham

Resources

Supporting People with Autism through Adulthood, National Audit Office, 2009

A Better Future: A consultation on a future strategy for adults with autistic spectrum conditions, DH, 2009

Good practice advice for PCT and LA commissioners, DH, 2009

Autism Bill becomes England’s first law for specific disability, Community Care

Practice implications; challenge to services

Employers: To ensure adults with autism are treated as equal citizens, and fully supported to fulfil their potential – one of the key objectives of the Department of Health’s autism strategy – managers need to ensure staff understand the issues they are facing.

Service providers: Many people with autism fall through the gaps created by traditional service boundaries, such as mental health and learning disability. Providers must ensure services are flexible enough to meet the unique needs of each individual.

Local authorities: The Autism Act 2009 may lead to requirements for councils to create a register of autistic children in their area, while councils and NHS organisations must record the number of adults with autism.

Senior managers: An individual or team in each organisation should take responsibility for developing autism services and ensuring that needs assessments are carried out.

This article is published in the 26 November issue of Community Care magazine under the heading Autism support in adulthood