Over the past 10 years a quiet revolution has been going on in Wales, Northern Ireland, Scotland and the Republic of Ireland as each nation has been developing their own national strategy for autism and critically, 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 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, yet. In Scotland, a Bill was proposed in the Scottish Parliament in 2010 which did not find favour. An autism strategy was published 18 months later, with Government support (£13.5 million over 3 yrs), and civil servants having a specific autism remit.
Both Northern Ireland and England have specific autism legislation, in England in 2009 applying to adults with autism, and extending 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, and also makes changes to the Disability Discrimination Act, allowing for autism to be considered equal to other areas. Years of legislative inactivity due to the Civil Conflict in Northern Ireland had led to outdated and inadequate systems in the areas of policy, and this was no more evident than in the area of disability (autism is a ‘hidden disability’ within the category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’s a developmental disorder. Consequently, people with autism without a learning disability and without a 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.
Leadership, Infrastructure and Collaboration
A national strategy may encompass an infrastructure network, at local, regional and/or national levels. It’s a collaborative infrastructure, involving the public and voluntary sectors and stakeholders. It must be leadership that makes the difference, with explicit management and coordination roles. More importantly, it’s the capability and willingness of a disparate range of people (from parents to professionals, autism service providers and practitioners) to work together to make the strategy deliver the results needed.
In its first 4 years the national autism strategy for Wales has made 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 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 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, research, 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 disciplines, institutions and professions all have a part to play. Opticians, dentists, emergency services staff, shop keepers, hairdressers and 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 stigma and securing attitudinal change amongst 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 ASD – is important.
Strategies in Scotland, Wales and Northern Ireland are establishing their infrastructure 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 are mapping autism services across the country and a range of one-stop shops are being piloted.
Parents, Practitioners and Professionals around a child or adult with autism need to be able to get on together because around ‘90% of people with autism feel that those who them do not adequately understand their needs’
An Autism Diagnosis
It starts with a diagnosis, and hopefully this can be achieved without having to wait for years on a waiting list. For adults with autism the process of securing a diagnosis can be really problematic and these 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 is post diagnostic support measures in place for families. The leading role in diagnosis is clearly within Health for an accurate and consistent profile which should be useful. 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 orientate through an institutional maze. It is no wonder that parents of children with autism are often considered the hidden experts, left alone to work out what help, support, information, training and advice that they need.
Autism is a life long condition, and teaching a child with autism how to learn will equip that child with all of 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 with autism may reduce significantly the costs of later support interventions, throughout the life of the person with autism.
Less that 10% of people with ASD can get a job compared with 45% of those with a disability and 65.8% of people without a disability
The Cost of a National Strategy for Autism
In an environment where they are scarce, it’s ever more important to understand the value of interventions, and what works. Policy makers and decision makers need to understand the cost of interventions, and several research projects are underway which are addressing this issue.
A brief overview of the financial costs of having an autism strategy in Wales includes around £ 7.5 million of ring fenced funding from the Welsh Government, and with 90% 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.
What does Investment in a National Strategy for Autism buy?
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 includes the all Wales Assessment/Diagnosis and Pre/Post Diagnostic Counselling Network for Adults with ASD. This is a national approach to the diagnosis of autism in adults. For adults there is also the Community Monitoring & Support Scheme, this is helpful particularly for adults with Asperger Syndrome. There is also 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 appointment of a Wales Autism Employment Ambassador (Robert Lloyd Griffiths, Director of the IOD, appointed Dec 2010), with an Employer’s Autism Charter and general profile and awareness raising among small and large companies in Wales.
There is also commissioned research into the needs of older people with ASD, published in 2010. What will be the quality of life for older people with autism? This work is being informed by research and is ongoing. There has also been a much wider range of benefits realised in Mental Health; the Criminal Justice System; Further and Higher Education: Old Age and the introduction and use of mobile phone apps.
Investment in research has been important. Empirical evidence is needed to demonstrate what has been achieved.
Developing a National Autism Strategy
It’s really not that easy! But there are aspects that are shared by the national autism strategies in Wales, Scotland and Northern Ireland. Firstly, a focus on Diagnosis, strategies tend to require a coordinated national approach to diagnosis and to early intervention and post diagnostic support for children and adults, and their families. Secondly, its attention to practice and the very real need for parents, practitioners and professionals to communicate to make sure outcomes are real and meaningful for people with autism. Thirdly, results matter and there must be impact which can be demonstrated. This means that strategies have to be monitored and evaluated and this information is shared – widely. Stakeholder engagement is another requirement because there are many families, disciplines and professions involved, and not only Health, Education and Social Care but also the Criminal Justice Service, NGO service providers and others. An infrastructure for staffing is another step towards implementing a strategy, to create inter-locking networks across localities, and perhaps at regional as well as 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 real difference to the lives of people with autism. It’s worth the investment.
The Celtic Nations Autism Partnership
Launched by Governments in Northern Ireland, the Republic of Ireland, Wales and Scotland between 2007 -2008, the Celtic Nations Autism Partnership is a unique and collaborative Partnership bringing together all of the stakeholders required to design, deliver and evaluate national strategies aimed at improving the quality of life for people with autism and their families. The Partners have shared values and common goals, sharing a vision where the lifelong needs of people with autism are both respected and addressed within a single national approach that sets clear goals to be achieved within different time frames, from 2 to 10 years. CNAP is perhaps unique in Europe, they have been addressing these questions for many years, looking for meaningful and practical approaches that support and improve the quality of life for people with autism and their families. Emerging from these strategies must be an improved understanding of best practice, and what that actually means for people with autism and their families.