It's all happening on the autism front - but what does the frenetic activity amount to for people with autistic spectrum conditions? Bob Hudson offers an 'everything you need to know'guide...
This is certainly a very busy time in the field of autism. Injust a few short months there has been a raft of significant publications and policy developments (see box 1 - foot of article).No less a figure than Sir Hugh Taylor, permanent secretary at the Department of Health (DH), said in evidence to the Public Accounts Committee: "This is an issue which, for good reasons, has come right up the political agenda". But how far up that agenda has it actually moved, and what might the future hold? The problems in relation to supporting adults with autism have been well rehearsed and are summarised in box 2 opposite.
Where next? The Autism Act (2009)
The government'svision for adults with ASC was set out in the Better Future consultation paper, which identified several key themes:
- social inclusion
- choice and control
- awareness raising
- access to training and employment.
However, the strategy was effectively overtaken by the passage ofthe Autism Act (a private members bill sponsored by the Conservative MP, Cheryl Gillan) and this is now the key policy driver. There are five clauses in the act. Clause 1 focuses on information gathering and requires every local authority to maintain and share a register of autistic children within their area. It obliges the secretary of state for health to make regulations requiring local authorities and NHS bodies to collect data on the population of adults with autism. Local authorities are required to provide the register to its 'relevant partners' on an annual basis. The DH has committed £600k for fresh research into the prevalence of adults with an ASC in England, but this study will not be complete until early 2011. Clause 2 seeks to introduce new sections into the Children Act (2004) to ensure the assessment of the specific needs of children with autism, the services required to meet those needs, and the training requirements of relevant staff to ensure such services are delivered effectively. Clause 3 aims to promote effective transition from children's to adult services for young people with autism. It requires a local authority's director of children's services and director of adult services to review the register of disabled children at least once every three months to make sure the transition process is working smoothly. Clause 4 requires a local authority and its partner PCT to have 'particular regard' to autism when preparing the local joint strategic needs assessment. Clause 5 of the bill introduces a new duty for the secretary of state for health to promote the provision of services and support by local authorities and NHS bodies to adults with autism. This includes training requirements,the provision of diagnostic and assessment services, and the sharing of good practice.
Implementation:The 2010 Autism Strategy
The strategy acknowledgesthat adults with autism "have often been badly let down by publicservices which have failed to recognise or respond to their needs... this must change". The vision is set out as a long-term goalwhich requires a cultural shift, but the strategy focuses on anumber of activities over the next three years (see box 3). So whatare the prospects of the aspirations becoming a reality? Autismpolicy would do well to learn from the experience of the ValuingPeople strategy, where aspirations and expectations were underminedby weak implementation, resulting in the strengthened (but stilluntested) arrangements introduced more recently through ValuingPeople Now. Although it may seem tedious and bureaucratic, changewill only be effectively delivered through robust multi-levelgovernance arrangements. Strong leadership and accountability atnational, regional and local levels will be required, but it is byno means clear that will be forthcoming. Although a national autismprogramme board will be established (co-chaired by the careservices minister and the director general of social care), therewill be no requirement to create local autism partnership boards tobring together different stakeholders and set a clear direction forimproved services. Neither will there be any obligation toestablish specialist autism teams along the lines promoted by theNational Autistic Society. Money, of course, is at the heart of thematter. The government's position is that the strategy is not about introducing new policies, but identifying how to make existingsupport better - a problem where services and support simply do notexist. There will be some additional expenditure needed in suchareas as buddying schemes, an online toolkit about autism forprofessionals, workforce development costs, the appointment ofjoint commissioners, improved diagnosis and assessment, andbuilding service capacity at a local level. However, the strategydoes not itemise or estimate such costs. There are, nevertheless,some reasons to be cheerful. The Joint Strategic Needs Assessmentcore data set is being reviewed and estimates of numbers of adultswith autism will be included in Spring 2010 in order to informstrategic planning. Each local area will then be expected todevelop its own commissioning plan around services for adults withautism. Each director of adult social care should ensure there is ajoint commissioner with a clear responsibility for adults withautism. Meanwhile, at regional level DH will support thedevelopment of a regional delivery plan, with oversight from theproposed national programme board. At the operational end, theNational Institute for Health and Clinical Excellence (NICE) isdeveloping two new clinical guidelines (one covering adults and onecovering children and young people) to improve processes arounddiagnosis, referral and management of autism. Diagnosis is not anend in itself - assessment of need must follow - but formaldiagnosis can be helpful in securing access to support. And thestrategy clearly states that diagnosis of autism should berecognised as a reason for assessment of both user and carer undercurrent legislation. The autism strategy is still only an earlystep in this particular policy journey. The first year deliveryplan sets out the priority actions to make change happen, includingthe development of regional delivery plans. This will be followedby a further delivery plan giving more detailed action for thelonger term and, at the end of the year, by statutory guidance.Although the outcome of the general election should not affectthese provisions, it would be naive not to expect someimplementation problems - there is still much to play for. It ishard to disagree with Sir Hugh's observation that autism policy hasgravitated higher up the political agenda, but it would bepremature to equate this with the creation of effective servicesand support. About the authorBob Hudson is honoraryprofessor in the school of applied social sciences, DurhamUniversity
Box 1. The policies
• Department of Health(2009) A Better Future: A consultation on a future strategy foradults with autistic spectrum conditions.
• Department of Health(2009) Services for Adults with Autistic Spectrum Conditions: Good practice advice for PCT and LA commissioners.
• National AuditOffice (2009) Supporting People With Autism Through Adulthood.
• House of Commons Public Accounts Committee (2009) Supporting PeopleWith Autism Through Adulthood.
• Passage of the Autism Act (2009).
• HM Government (2010) Fulfilling and Rewarding Lives: The strategyfor adults with autism in England.
Box 2. The problems
• Professional and public misunderstanding: autism is eitherundiagnosed or misdiagnosed, with significant consequences foraccessing appropriate support.
• Limited availability of support:the most documented concern, and covering most areas of public policy.
• Inadequate data collection and forward planning: meansthat the needs of adults with an ASC cannot be taken into accountin the planning and commissioning of local services.
• Poor experiences of transition to young adulthood: many LAs unable toprovide basic information on the special educational needs andtransition arrangements for children with autism in their area.
• Failure to personalise support: only a minority of adults withautism have a person-centred plan or care plan.
• Poor policy focus and lack of leadership: many areas lack a local lead individual orteam to take responsibility for ensuring that assessments of needare carried out, and for developing services and support.
Box3. The way forward
• Increasing awareness and understanding of autism among frontline professionals
• Developing a clear consistent pathway for diagnosis in every area, to be followed bythe offer of a personalised assessment
• Improving access for adults with autism to the services and support they need to live independently in the community
• Helping adults with autism into work
• Enabling partners to plan and develop appropriate services for adults with autism to meet identified needs and priorities.