Putting autism on the map

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How Celtic nations are learning from each other to develop strategic approaches to autism

Over the past ten years, a quiet revolution has been going on in Wales, Northern Ireland, Scotland and the Republic of Ireland, as each nation has been developing its own national strategy for autism. Crucially, the nations are also sharing their understanding, knowledge and expertise. This article highlights a few of the policy and practice issues, and some of the indicators for success, that may be emerging from the Celtic Nations Autism Partnership.

Autism policy and legislation

There is no single national template, only design solutions that work by recognising that institutional, societal, cultural and political contexts all play a key role in shaping the very different approaches that are being adopted. There is little doubt that this change would not be happening had devolution not taken place. For instance, both Scotland and Wales have well-resourced and openly available strategies. Neither nation has any specific autism legislation, nor do they seem to need it. A bill was proposed in the Scottish Parliament in 2010, though it did not find favour. An autism strategy was published 18 months later with government support (£13.5 million over three years) and with civil servants having a specific autism remit.

Both Northern Ireland and England have specific autism legislation. England’s 2009 Autism Act applies to adults with autism, and extended duties within the Department of Health. In Northern Ireland, the Autism Act (NI) 2011 applies to children and adults, with duties extended across all government departments. It also makes changes to the Disability Discrimination Act to include discrimination against those with autism.

Years of legislative inactivity due to the civil conflict in Northern Ireland had led to outdated and inadequate systems in the areas of policy, and this was no more evident than in the area of disability (autism is a “hidden disability” within the category of social and communication disability). There was no category for autism; there was no understanding that autism was neither a learning disability nor a mental illness. It is a developmental disorder. Consequently, people with autism but without a learning disability or mental illness had no access to services.

There was no data for service planning or to develop the specific interventions required. With this realisation, the campaign for policy change upon a rights and equality foundation was developed, and the national autism strategy in Northern Ireland is currently out for consultation.

Nine out of ten people with autism think those who support them do not understand their needs.Leadership, infrastructure and collaboration

A national strategy may encompass an infrastructure network at local, regional and/or national levels. This is a collaborative infrastructure, involving the public and voluntary sectors and stakeholders. Effective leadership, involving explicit management and coordination roles, is absolutely vital. However, it is the capability and willingness of a disparate range of people to work together – from parents to professionals and autism service providers to practitioners – that makes the strategy deliver the results needed.

In its first four years, the national autism strategy for Wales has had a considerable impact, with major national cultural shifts in the leadership, commissioning, design and delivery of services across the age range and spectrum of autism. A national and local infrastructure for autism is in place, with clear links established for families and individuals with autism, as well as a widening of the awareness of autism, particularly in adults.

Progressively, the diagnostic facilities for children and adults are improving and many collaborative and creative projects are underway. There are processes in place for monitoring and evaluation, and a national research centre for autism has been developed. The Celtic Nations Autism Partnership brings together a coordinated approach to research that prevents duplication and makes sense strategically, because research is a key facet of autism strategies at nation level.

Comparing and contrasting the different approaches being adopted in the design, development and implementation of national autism strategies in Northern Ireland, Scotland, Wales and England is useful. There is a lot to learn because monitoring and evaluation, training, standards, research and development are common bonds that link professionals, practitioners and autism service providers everywhere.
There are a lot of people involved in the life of a child or adult with autism and collaboration is a key requirement. Education, health, justice, employment, social care and other institutions, disciplines and professions all have a part to play.

Opticians, dentists, emergency services staff, shop keepers and hairdressers are all very likely to come into contact with someone with autism, and every strategy has a strand concerned with communications and raising awareness of autism. Challenging social stigma and securing attitudinal change in society may be the most effective way to improve outcomes for people with autism.  Primary social impairment – a challenge in itself because of the nature of autism – is important.

Strategies in Scotland, Wales and Northern Ireland are establishing their infrastructures to implement their goals and action plans. Gradually, the implementation phases of these strategies are highlighting network maps of researchers, professionals, autism services and other communities. In Scotland, a team is mapping autism services across the country, and a range of one-stop shops is being piloted.
Parents, practitioners and professionals around a child or adult with autism need to be able to get on together because around 90 per cent of people with autism feel that those who support them do not adequately understand their needs.

An autism diagnosis

It starts with a diagnosis, and hopefully this can be achieved without having to sit for years on a waiting list. For adults with autism, the process of securing a diagnosis can be really problematic, and the national strategies are tackling this issue with work strands focusing solely on diagnostic services. In Wales, the flagship nation driving through the first national strategy, there are post-diagnostic support measures in place for families. The leading role in diagnosis is clearly within health, to ensure an accurate and consistent profile. However, diagnosis is all too often followed by families having to struggle to come to terms with the lifelong impact of autism, and having to negotiate an institutional maze. It is no wonder that parents of children with autism are often considered to be the hidden experts, left alone to work out what help, support, information, training and advice they need.

Autism is a life-long condition, and teaching a child with autism how to learn will equip that child with the skills required for adulthood, including the ability to hold down a paid job. The cost of not teaching a child with autism to learn is significantly greater in the longer-term. The premise of whole-life cost is the basis of a range of research projects that seek to demonstrate the value of different decisions regarding the methodology and interventions that are available for children and adults with autism. Skilled and intensive learning support with young children may reduce significantly the costs of later support interventions throughout the life of the person with autism.

Less than ten per cent of people with ASD can get a job, compared with 45 per cent of those with a disability and 65.8 per cent of people without a disability (source: The Rights Based Approach to ASD in the UNCRPD, presentation in Brussels by Donata Vivanti, Vice-President of the European Disability Forum and Autism Europe, 6 November 2012).

The cost of a national strategy for autism

In an environment where resources are scarce, it is ever more important to understand the value of particular interventions, and what works. Policy and decision makers need to understand the cost of interventions, and several research projects are underway which are addressing this issue.

The financial cost of having an autism strategy in Wales includes around £7.5 million of ring-fenced funding from the Welsh Government, with 90 per cent of that funding going directly into public sector education, health and social services. The remainder goes into research and project development work in the academic and voluntary sectors.

The Welsh investment in their strategy provides an autism infrastructure, from a government minister with specific responsibility for autism down to local coordinators and mentors on the ground, working with families and people with autism. Each of the 22 local authorities in Wales has a lead officer and a local infrastructure, with coordinated stakeholder engagements at local levels in the planning and delivery of local services.

The investment also provides a national approach to diagnosis, and to post-diagnostic support services, particularly for adults with autism. There is a lead diagnostician, and post-diagnosis support includes the Wales Assessment/Diagnosis and Pre/Post Diagnostic Counselling Network for Adults with ASD. For adults, there is also the Community Monitoring and Support Scheme, which is helpful particularly for adults with Asperger’s syndrome. In addition, there is an all-Wales diagnostic web-based forum for children’s diagnosis.

In terms of employability, a partnership with the Institute of Directors (IOD) led to the establishment of a Wales Autism Employment Ambassador (Robert Lloyd Griffiths, Director of the IOD, was appointed in December 2010), an Employer’s Autism Charter and general profile and awareness raising among small and large companies in Wales.

Commissioned research into the needs of older people with autism was also published in 2010, and work on the quality of life for older people with autism is ongoing, and being informed by research. Further empirical evidence is needed to demonstrate what has been achieved.

Developing a national autism strategy

Developing a national autism strategy is not easy, but there are aspects that are shared by the strategies in Wales, Scotland and Northern Ireland. These include focussing on a coordinated national approach to diagnosis, early intervention and post-diagnostic support for children and adults, and their families. The strategies exhibit an attention to the need for parents, practitioners and professionals to communicate to make sure outcomes are real and meaningful for people with autism. They are also founded on the idea that results matter – they must have an impact which can be demonstrated. This means that strategies have to be monitored and evaluated, and the information gathered must be shared widely.

Stakeholder engagement is another requirement of a successful autism strategy; there are many families, disciplines and professions involved, not only health, education and social care but also the criminal justice service, charity service providers and others.

Building an infrastructure for staffing is another important factor, involving inter-locking networks across localities, and perhaps at regional as well as at a national level.

Last but not least is the issue of leadership. At local, regional and national levels, leadership skills are needed to generate a desire for change and to motivate institutional players to make a positive difference. For the lives of all those with autism, it really is worth the investment.

Further information

A former teacher and CEO of a charity for those with learning disabilities, Catherine Maclean has delivered national government and voluntary sector education programmes for over 15 years. Today, she coordinates the work of the Celtic Nations Autism Partnership, launched by governments in Northern Ireland, the Republic of Ireland, Wales and Scotland between 2007 and 2008. It encompasses the charities Scottish Autism, Autism Northern Ireland, the Irish Society for Autism and Autism Cymru:
www.celticnationsautism.eu

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