The Scottish Strategy for Autism

Scottish Strategy for Autism to ensure that progress is made across Scotland in delivering quality services for people with autism and their families.

CHAPTER 2: The strategic context


This chapter moves on from chapter one to consider in depth what needs to happen next in order to create an Autism Strategy for Scotland. In this introduction the need for an ASD Reference Group is recognised and is placed in the context of the National Performance Framework, the lifelong nature of autism and the role of assessment in identifying the needs of people with autism, leading to rights-based outcomes. This chapter looks to what still needs to be achieved: the process of identifying gaps in provision leads to a series of 26 recommendations about how to improve support in order to improve the quality of life of people with autism. The recommendations honour the vision and values which underpin the autism strategy and have the wellbeing of people with autism as central and fundamental. This chapter also takes account of responses to the 'Towards a Strategy' [11] consultation.

The recommendations lead to six aims and linked action. For successful implementation, it is essential that there is strategic leadership, an intention to achieve best value for services, collaboration and involvement in decision-making, cross-agency working through stronger networks, high quality diagnosis, intervention and support ensuring improved quality of life and leading to wider opportunities including employment.

Our long-term vision requires societal change and so must be shared and advanced for true equality of opportunity to become a reality for everyone, including carers, so that they are not toiling alone with what can be very testing circumstances. Partnership working between central and local government and engagement with the independent sector will be pivotal to success. The Concordat has heralded a renewed recognition of the importance of joint working to maximise the benefits for individuals. This approach is also central to The same as you? [12] and Getting It Right for Every Child [13] .

The work undertaken to date has led to important guidance, creative models of practice and substantial improvements in the quality of life for many people on the spectrum. What is needed now is to ensure that what works well in some localities is applied across Scotland and brings with it consistency, without compromising local flexibility and accountability.

The Scottish National Performance Framework

As the National Performance Framework [14] makes clear, the purpose of Government is to create a more successful country with opportunities for all to flourish. Its high level emphasis on participation, cohesion and sustainability will resonate with those on the spectrum and their families as critical aspects of service design and delivery. The aspirations of the National Performance Framework are translated into national outcomes in which public services are of high quality, continually improving, efficient and responsive to local people's needs. There is recognition, too, of the importance of tackling significant health inequalities and of giving children the best start in life as well as getting to a point where everyone is able to live a longer, healthier, life. The outcomes promote a society where we are encouraged to be lifelong learners and to accept that we have a contribution to make and responsibility for our own behaviours and those of others.

These elements form the basis for each of the annual Single Outcome Agreements ( SOA) that each local authority reaches with central government. SOAs ensure that local outcomes are included to take account of local variations and priorities.

Autism lifelong: gauging the need for generic and specialist services

The needs of people on the autism spectrum are lifelong. It is very important that services recognise this and work together to make sure that moving from one stage of a person's life to another is planned for and managed as smoothly as possible, that transitions are managed better and indeed minimised. It is common for people with ASD to have a range of conditions. These may include, but are not limited to, learning disability and mental health [15] issues. Such individuals often have complex needs that have a direct impact on their health and wellbeing as well as their overall quality of life. It is essential therefore that the services that are commissioned and developed are both generic and specialist where needed, across the lifespan.

Autism Lifelong: the early years

The Scottish Government and its partners in local government and the NHS are giving high priority to redesigning services around the principles of prevention, early identification of problems and early intervention by service providers who will work together to meet the needs of the individual child - i.e. the principles which underpin Getting It Right for Every Child. These principles are particularly evident in the Early Years Framework which reflects robust international evidence that a child's early years have a very significant influence on a child's future health, wellbeing, social development, educational attainment and employability. Early identification of problems and early intervention can not only help turn around the life of a child, but there is evidence that this can lead to significant financial savings to service providers later in a child's life. The Early Years Framework and the associated social policy frameworks aimed at addressing poverty and health inequalities are designed to help break Scotland's historic and inter-generational cycles of poverty, poor health, poor educational outcomes and unemployment.

Following a review of screening, surveillance and health promotion activity by the Royal College of Paediatrics and Child Health, the then Scottish Executive issued guidance on the key recommendations contained in that review in 2005. Health for All Children 4: Guidance on Implementation in Scotland (commonly known as Hall 4) contained a core programme of contacts which every child and young person should receive. Hall 4 introduced a tiered programme of support and intervention, ensuring that children and young people receive the level of care that they require, according to assessed need. A Hall 4 Implementation Network was established to assist with implementation and, through working with this group, concerns regarding implementation of certain aspect of Hall 4 were identified as requiring further clarification or guidance. These issues were discussed and proposals for the future were consulted on in Summer 2010.

Following that consultation, the Scottish Government issued A New Look at Hall 4 - the Early Years - Good Health for Every Child guidance in January 2011. It sets out the way forward for the successful delivery of Hall 4 in the early years. It supplements the 2005 guidance - Health for All Children 4: Guidance on Implementation in Scotland - and addresses key issues identified as requiring further clarification. The guidance is aimed at front-line practitioners involved in the delivery of health services to children and their families as well as managers of these services. Whilst aimed at the NHS, it recognises the need for multi-agency and multi-disciplinary working in order to deliver the best quality of care and support for children and their families in the vital early years.

Its recommendations include the introduction of a 24-30 month review to pick up a range of development issues including communication and language skills, vision, hearing and oral health; parental concerns and issues; family relationships as well as being a key point of delivery for health promotion messages, e.g. healthy eating, stimulation and play, behaviour management and physical activity. We are in the process of setting up a short-life Working Group to agree the core issues which should be addressed and recorded at the 24-30 month review. The Group is expected to produce a report in the Spring 2012.

In January 2010, following a period of consultation, the Scottish Government issued guidance on the use of the new, national Personal Child Health Record (the Red Book). Prior to this, each NHS Board used their own local version of the Red Book which limited its usefulness when the child was either referred for specialist services into one of the main children's hospitals or transferred to another NHS Board area. The new Red Book contains a checklist for parents for 'Development Firsts' which acts as a guide to parents on when their child should be undertaking certain activities. These pages should be used as a guide for parents who are encouraged to use the Red Book throughout the early years. Parents who have concerns about their child's development should speak to the relevant health professional.

Some children will have been identified as likely to require additional support before they start nursery school. In these circumstances education authorities should seek and take account of relevant advice and information from appropriate agencies and individuals at least six months before the child is expected to start nursery. This advice and information will help the education authority to establish the child's additional support needs and to determine the provision and adequacy of additional support required. A similar process must be undertaken before a child with additional support needs transfers from pre-school provision to primary school and from primary school to secondary school. However, the timescale for the planning of a transition is longer and the duty to seek and take account of relevant information and advice from appropriate agencies or persons should be completed no later than 12 months before the transition.

Autism Lifelong: the school years

All children and young people will experience transitions as they move through the various stages of schooling, and each transition should be understood as a process rather than an event. This includes entry to pre-school provision; transfer to primary school and through the different stages of primary and secondary school and, in particular, to post-school provision. Some children and young people may also experience changes in their school education at other times as a result of a transfer to another school or a break in their education. Equally many day-to-day transitions occur and may offer both challenges and opportunities. It is important that arrangements are in place to ensure that any changes make sense to the person concerned and are as smooth as possible.

This is particularly important when changes involve a child or young person with additional support needs and the education authority and other agencies should take account of the way in which these changes affect the provision of additional support. Early and timely planning is required to ensure continuity and progression and the responsibilities on education authorities and other partners are set out in statute. Transition planning should be co-ordinated by one person and where there is multi-agency involvement then a lead professional should be involved.

The Supporting Children's Learning Code of Practice sets out detailed guidance on planning for changes specifying the duties on education authorities and the time frame within which these duties should be carried out.

Autism Lifelong: the transition to adult life

The transition to post-school life can be daunting and therefore legislation places specific duties on education authorities to help prospective school leavers with additional support needs to make the transition from school to post-school life successfully. These transition arrangements should be clear so that the leaver and all those involved know exactly what is happening, when it is happening and who is involved. The effectiveness of this process should be monitored and reviewed. Under the Education (Additional Support for Learning) (Scotland) Act 2004 (as amended), the remit of the Additional Support Needs Tribunal for Scotland has been expanded, allowing it to consider references in relation to an alleged failure of an authority to comply with any of its duties in relation to post school transitions. School leaver destinations should be recorded and knowledge about the duration of the individual's time at the first and subsequent destination has the potential to inform transitions planning effectively and to sustain necessary support over time.

Autism Lifelong: the adult years

Given the lifelong nature of autism, it is essential that there is continuity of care and support at a level appropriate to each individual. For some, ongoing care needs are comprehensive. For others, a thin thread of contact and support is sufficient to sustain wellbeing and ensure inclusion. Access to appropriate assessment of needs is therefore essential throughout life. This will go some way to ensuring access to appropriate and consistent levels of support across the lifespan, including into older age.

Assessment of need

A care needs assessment is an assessment carried out with the user and care professionals to find out what outcomes are important to the individual, their care needs and how they might best be met. It is variously known as a 'community care assessment', a 'joint needs assessment' or a 'single shared assessment'. Single shared assessment is the streamlining of the assessment process to enable the needs and outcomes for the individual to be identified and subsequent interventions and services put in place. Shared assessment ensures that at any one time a lead professional, rather than a number of different people, co-ordinates the assessment, ensures that agreed services are put in place and acts as a point of contact [16] .

Work has been underway since 2006 on developing an approach based on user and carer outcomes. The approach is called Talking Points - a personal outcomes approach [17] to assessment, planning and review. It aims to shift engagement with people who use services away from service-led approaches. This involves everyone working together to achieve the best possible effect on the individual's life. The philosophy of this approach is one that emphasises the strengths, capacity and resilience of individuals, builds upon natural support systems and includes consideration of wider community based resources.

Following assessment for individuals with complex care needs the assessment, their care needs and regular reviews of their needs will be organised as part of a process called Care Management. This is:

  • A process in which an individual's needs are assessed and evaluated, eligibility for service is determined, a care plan is prepared and implemented, services tailored to individuals needs are provided, and needs are monitored and re-assessed;
  • focussed on people with complex, or frequently or rapidly changing needs; and
  • undertaken by a range of professionally qualified staff in social work and health, with appropriate training, skills and experience.

Original guidance on care management was developed in 1991 and a further update was released in 2004 [18] with the aim being to refocus care management on people with complex or changing needs and on extending the range of professionals undertaking care management.

Aims and recommendations

The policy context that heralds the autism strategy gives a framework for implementation. However, policy processes continue to evolve and may require new responses over time. Each of the six aims addressed in the sections that follow take account of the policy context and indicate ways forward.

1) Strategic Leadership

The Scottish Government will provide strategic leadership on improving the lives of people affected by autism. It will lead on creating a strategic vision for the development of services and support for people with autism, their families and carers.

The ASD Reference Group

The implementation of the autism strategy requires national leadership on a long term basis. An ASD Reference Group has been reconvened. This will ensure the promotion of good practice for local agencies working together and will highlight the advantages of sharing budgets to encourage the development of services that cross health/social care, educational and skills development boundaries. It is recommended that the ASD Reference Group is reconvened on a long-term basis to include COSLA membership to oversee developments and to progress change. It should produce an annual report to relevant Ministers and the political leadership of COSLA ( Recommendation 1 ).

Autism guidance

Published Scottish Government guidance is available for wider dissemination [19] . It is recommended that the ASD Reference Group works collaboratively with, and offers support to COSLA, NHS, criminal justice and other relevant public bodies to effect the implementation of the various autism guidelines. ( Recommendation 2 ).

Increasing public and professional awareness of autism

The advantages of having local lead officers in gaining increased public awareness of autism and in developing and sustaining local supports are considerable. It is recommended that the ASD Reference Group explores the benefits of ASD lead officers with the Association of Directors of Social Work and with COSLA to establish how rollout across Scotland might best be achieved ( Recommendation 3 ).

The role of scrutiny bodies

On 1 April 2011 the work of the Care Commission passed to a new body, Social Care and Social Work Improvement Scotland ( SCSWIS). Regulation of independent healthcare has passed to Healthcare Improvement Scotland ( HIS).

The main changes are:

  • to require SCSWIS and HIS to develop inspection plans in line with best regulatory practice. This will allow the new bodies to develop risk based and proportionate plans for inspections and move away from cyclical inspections based on minimum frequencies set out in legislation;
  • new provision to allow emergency cancellation of registration and emergency condition notices which can take effect immediately;
  • new duties to require local authorities and health boards to take account of SCSWIS and HIS reports when commissioning or contracting for services.

New provisions have been inserted in Part 6 in relation to complaints handling by the Ombudsman in the Scottish Public Services Ombudsman Act 2002. The aim of these amendments is to bring about a simpler, more consistent and more effective approach to dealing with complaints about public services. The Ombudsman must publish a statement of principles concerning relevant complaints-handling procedures of bodies and persons that are listed in Schedule 2 to the Scottish Public Services Ombudsman Act 2002. The Ombudsman will have powers to publish model complaints-handling procedures and to specify who must comply with them.

All listed authorities including, SCSWIS and HIS will be expected to comply with these principles when dealing with complaints about how they have exercised their own functions. SCSWIS will be expected to take them into account when dealing with complaints from service users, someone acting on their behalf or any concerned member of the public - concerning the provision of a care service to the service user, the provision of a care service generally; or about SCSWIS functions. SCSWIS is not responsible for handling complaints out with its area of regulatory responsibility, though it will refer complainants to the most appropriate body.

HIS will be expected to comply with these procedures when dealing with complaints about independent healthcare. The 2010 Act also places duties on SCSWIS, HIS and other regulatory bodies to cooperate with one another when required.

In addition to the regulatory implications of this Act, other regulatory bodies relevant to the general wellbeing of people with ASD might be expected to make a valuable contribution to the work of the Reference Group. These would include bodies that provide scrutiny of educational opportunities and criminal justice system treatment of people with ASD.

It is recommended that the ASD Reference Group meets with representatives of both SCSWIS and HIS, as well as other relevant regulatory bodies, such as those in education and criminal justice, with a view to learning about current developments and ensure that the needs and wishes of those on the spectrum are taken into account in future programmes ( Recommendation 4 ).

2) Best value for services

Achieving best value for services for people affected by autism will ensure that resources are effectively targeted and that the outcomes in improving people's lives are the best we can achieve.

The economic impact of autism

People with ASD have a right to the information, equipment, assistance and support services necessary to live a fully productive life with dignity and independence of choice, and to feel included in society. Understanding of autism should be improved across all public services to ensure that the pace of progress meets increasing public expectations. This work will be particularly challenging in a climate that will be about doing a lot more with a lot less. Existing work on the economic costs of autism (Knapp [20] ) should be applied to the Scottish context to inform strategy and planning leading to positive impacts both for individuals and for the economy as a whole ( Recommendation 5 ).

Planning and identification of need

The Concordat emphasises the importance of outcomes for people whilst stressing that statistical returns need to have a clear purpose that assists with outcome delivery. This means that SOAs are now the principal tool for laying out and evaluating progress at local level. So devising another set of Partnership in Practice agreements is not feasible. Importantly, influencing SOA content can be achieved through user and carer capacity-building training.

Identification of those on the spectrum is another matter. Whilst the Scottish Consortium for Learning Disability ( SCLD) is at an early stage in collecting information on those with ASD, it is working directly with local authorities to build on the quality of the information available.

It is two years since the ASD Commissioning Guidance for health and social care commissioners was published. This tool will be further highlighted with local authorities and promoted as a useful resource to demonstrate good community care outcomes. It is therefore recommended that the effectiveness of implementation of the Commissioning Guidance is reviewed by the ASD Reference Group by facilitating an audit of current service commissioning ( Recommendation 6 ).

Research to examine and compare the outcomes in relation to quality of life for those who are supported by autism service providers and individuals who access generic provision is needed. Relevant findings will inform the revision of guidance for commissioners of services for people with autism ( Recommendation 7 ).

Key determinants of service provision

The ASD Reference Group in collaboration with autism service providers will identify the key determinants of service provision that result in improved quality of life for people with ASD, across the spectrum and across the lifespan ( Recommendation 8 ). This recognition of autism as a lifelong condition allows policy and planning to be aware of a life stages approach, of the need for a range of services and of the importance of the holistic view of autism.

Good practice models - Learning from pilot projects

It is evident that the one stop shops that were developed for adults have been both successful and challenged in meeting demands. Nevertheless, they continue to function and are highly valued by users, carers and professionals alike. In some areas of Scotland there is evidence that others have tried to adapt this model of working for themselves but it is also clear that the approach is not embedded across Scotland. There is a need to disseminate outcomes of funded pilot projects more widely and to engage with local initiatives that signal good practice models that would be of wider benefit ( e.g. The Pines Centre for Children and Families Affected by ASD, Inverness - A partnership between Highland Council, NHS Highland, National Autistic Society Scotland and Children in Highland Information Point Plus).

It is recommended that the ASD Reference Group hosts an event to evaluate and recognise good practice in Scotland to disseminate models of practice, to evaluate success, recognise benefits and limitations and agree how to develop good models across the country in a way that is cost-effective ( Recommendation 9 ).

Multi-agency pathways to interventions

The interventions that we have in mind are largely health based. Post-diagnostic support is hugely important and services need to address provision of early and appropriate interventions across the whole age range. Agencies need to continue to work together alongside the voluntary sector to develop flexible and timely interventions.

As soon as a child is diagnosed a range of interventions should be considered in relation to each child's specific needs. Therapeutic interventions may include work on improving communication, learning to be more flexible in accepting change and tolerating social approaches, anger and/or anxiety management, help with eating, sleeping, bathing and toileting as well as coping with sensory issues. These interventions are best delivered by ASD multi-disciplinary intervention teams. Parents should be considered as co-therapists.

Some children with Asperger's Syndrome cope well in a structured school environment and are doing well academically but their difficulties are strongly manifested in social situations outside the classroom, at home and in the community. In cases like this parents are often left with little support. Services need to recognise this group and to be able to provide these parents and young people with appropriate interventions and support.

For these issues to be fully explored it is recommended that agencies and services develop a menu of interventions including advice, therapeutic interventions and counselling for children, young people and adults with an ASD, that are appropriate and flexible to individual need. This menu should identify advice and support that is immediately available, and set out the referral and assessment process for all other services and interventions. ( Recommendation 10 ).

The autism spectrum

It is also essential that more able individuals with ASD do not go unrecognised or are misdiagnosed and that there is sufficient expertise for working with them. Learning disability services may not be appropriate providers of diagnosis or ongoing support for these individuals. Similarly adult mental health services have not traditionally worked with them either. However, there is increasing awareness of the need to be better informed about these disorders and develop better approaches to those adults on the spectrum who do not have a learning disability.

It is therefore recommended that consideration is given to the specific supports needed for the more able individuals with ASD ( Recommendation 11 ).

The evidence base

It is essential that the findings from quality research are disseminated and put into practice. There is also a need to address those issues of concern for individuals and families affected by autism. The existing models of support need to be evaluated further in order to identify interventions which are effective and lead to good outcomes for people on the autism spectrum. Parents and carers, for example, would like further research on sleep problems experienced by those with autism as well as on how to manage the anxiety with which many individuals struggle.

More specifically, a clear conduit for feeding in research information that updates, endorses and improves clinical practice is essential. A recent helpful example is the Parent-mediated communication-focused treatment study ( PACT [21] ). This concluded that, whilst they were unable to recommend the addition of the PACT intervention to treatment as usual for the reduction of autism symptoms, a clear benefit was noted for parent-child social communication. A simple means of communicating about ongoing work could be a web page listing to heighten the profile of the numerous projects that are going on across Scotland.

It is recommended that an evaluation of existing research is commissioned by the ASD Reference Group as well as consideration given to what further research is necessary with a view to disseminating what is available and to the commissioning some pieces that would be of particular practical value to people with ASD and their carers ( Recommendation 12 ).

3) Collaboration and involvement in decision making

People with autism, and their families and carers, should be involved at all levels of decision-making.

Local planning processes

Working through SOAs is still evolving. People who use services and those who advocate on their behalf need to familiarise themselves with the SOA for their area in order to be able to influence its future content, to participate in local planning processes, and to ensure that the specific needs of those on the autism spectrum are identified, addressed and continuously reviewed ( Recommendation 13 ).

Self-directed support

Beyond diagnosis, individuals are also entitled to have their need for community care services assessed under the National Health Service and Community Care Act 1990, a right which is supplemented by the Disability Discrimination Act 2005 which requires that services need to make reasonable adjustments for disabled adults. This includes people with ASD. The Scottish Government has launched the self-directed support strategy which is a key component of the drive to personalise and tailor support flexibly so that individuals can exercise more choice and control in their lives. All of these policies are directed at ensuring that individuals have far more say in what supports they choose to use.

Self-directed support ( SDS), including direct payments, provides individual budgets for people to buy their own support packages to meet their assessed personal, educational, social and healthcare needs, including those of people on the autism spectrum. Practice varies across local authorities in the extent to which health resources have been integrated into SDS packages.

The SDS strategy provides a framework for significant change in the way support is provided, and within that gives consideration to the ways self-directed support can most appropriately be used to meet the needs of particular groups.

The Scottish Government has also consulted on proposals to bring forward a Bill which will provide the legislative framework for more people to direct their own support. This will consolidate and modernise existing laws and create a positive framework for self-directed support. There will also be provision to widen eligibility for direct payments to a number of user groups and situations including carers.

It is recommended that the SDS Strategy Implementation Group and the SDS Bill Reference Group ensure representation from the autism community so that their interests are taken into account as further developments take place ( Recommendation 14 ).

4) Cross agency working through stronger networks

The capacity for cross-agency working will be developed through stronger networks, best practice and training. This will help deliver cost-effective supports and interventions.

The need for information - Scottish Autism Services Network ( SASN)

Individuals and families need information at the point of diagnosis and beyond. They have to be able to make sense of a diagnosis of autism to move forward and professionals need to have sound information and advice to offer on all aspects of daily living. This is why The same as you? review contains a specific recommendation to set up a national network on ASD which became the Scottish Autism Services Network ( SASN), hosted by the National Centre for Autism Studies at the University of Strathclyde. They, in turn, worked closely with the National Autistic Society to form links to their Autism Services Directory, which is a comprehensive directory of the services available in a local area.

SASN is widely recognised as a hub of direction to services for people affected by ASD and as a means of providing information, sharing advice and emotional support. It was able to establish a number of networks across Scotland on a cross-cutting basis involving disciplines in education, health, social work and the third sector. It is seen to be unique and at the leading edge of inter-professional development in this field as there is no known similar autism specific network within Europe. However, it has struggled to be self-financing since the original funding ended and is maintained through volunteers and a skeleton staff.

Highlighting and disseminating good practice is essential for sustained and meaningful progress on an equitable basis across Scotland. We need to have an understanding of what kinds of projects and support meet the particular needs of this client group and have proven to give good outcomes. It is important to know what has been demonstrated as working, as other agencies can benefit from the experience of those who set up and work on these projects. This kind of information should be disseminated throughout the rest of the country for all agencies to learn from the experience. Sharing the learning gained from a variety of initiatives can also help local agencies to make decisions about the good use of scarce resources.

Key government policies and publications over recent years aim to improve services and support people with disability but apply also to people who are on the autism spectrum, whether or not they have a disability. Local authorities and health boards would benefit from having a central resource which showed how legislation, guidelines and statutory obligations fit together. This would give greater clarity and would encourage agencies to work better together to meet their statutory obligations. It would include reminding them of their obligations under the equality and human rights legislation to ensure equality of access to mainstream public services.

It is recommended that existing reports on the work of Scottish Autism Services Network are formally evaluated with a view to assessing its long-term viability and effectiveness ( Recommendation 15 ).

The SIGN Guideline - A matched evidence base for adulthood

The SIGN Guideline No 98 [22] produced in 2007 for children and young people up to the age of 18 summarised the evidence base on ASD, suggested audit targets and research ideas and described how to share information with families and carers. It has been internationally acclaimed as ground-breaking and has been developed as an e-module to be more accessible worldwide via the SIGN website at This medical education innovation is due to go live by the end of 2011 and represents an important development in the dissemination of evidence-based information about ASD for both the public and professionals. It will be subject to review, possibly in 2011/12.

Diagnosis is not limited to childhood and it is recommended that the ASD Reference Group contributes to a review of the SIGN Guidelines and in doing so, considers where and how best this innovation might be replicated for adults and other relevant professions ( Recommendation 16 ).

Scotland is fortunate in having such a wide range of educational and training resources available both at national and local level which meet a wealth of practical and academic needs from awareness-raising and capacity-building through to the completion of Masters and Doctorate degrees. However, no system can ever fully address what is required because there will always be new parents and professionals looking for information and advice and the knowledge that we have about ASD and its management will continue to develop and will affect training programme content. There is a need to review the literature on appropriate interventions for people on the autism spectrum in order to ensure that professionals are working on the most up to date information. There is also a need to collaborate with local service providers on how best to support front-line staff by providing appropriate ASD training. The work currently being done to review the classifications for diagnosis ( DSM-V, ICD-11) will be significant and staff will need to be trained to understand the outcomes of these deliberations. If genetic and metabolic screening were to become common practice, improved training opportunities would be needed for broader and effective interdisciplinary working.

There are also other training initiatives that are ongoing from which those with ASD could benefit more by specific time being taken to assess their relevance and make the appropriate bridges to maximise those benefits. An example is that the National Implementation Group for the learning disability strategy The same as you? agreed to focus on promoting health improvement and tackling health inequalities for people with learning disabilities as its priority. The definition of learning disability for the purposes of The same as you? includes people with ASD, whether or not they also have a learning disability and the change programme relating to health improvement and health inequalities takes account of the health needs of this group. The strategic objectives of this change programme are to deliver better health and better care for people with learning disabilities and ASD. An essential element of the change programme is that health boards participate in a learning network to enable Boards to share good practice and experience.

An audit of existing training provision building on the earlier work of the National Training Framework for Autism should be undertaken: this will identify gaps in training and training standards. It is recommended that the Training Sub-Group of the main Reference Group is reconstituted and strengthened by the inclusion of an SCLD representative to undertake an audit of existing provision and to take evidence from grass roots trainers with a view to recognising strengths and gaps as well as identifying the means by which to further improve what is on offer ( Recommendation 17 ).

Good Practice Transitions Guidance

It is recommended that good practice transition guidance is developed, building on from existing educational guidance, in order to support the lifelong challenges facing people with autism as they make daily and life-stage transitions ( Recommendation 18 ) so ensuring more continuity of support and greater well being.

5) High quality diagnosis, intervention and support

A good quality diagnosis is the key foundation for both children and adults that will lead them to understanding of their condition, the recognition of individual strengths and challenges, enabling the best support to be made available to them.

Approaches to diagnosis and management

It is recommended that a request is made to NHS Quality Improvement Scotland ( QIS), as the body into which SIGN has been integrated, to develop guidelines for evidence-based approaches to the diagnosis and management of ASD in adults ( Recommendation 19 ).

Continuing professional development

Further it is recommended that approaches are made to the Royal College of Physicians and Surgeons to establish the feasibility and desirability of disseminating ASD materials in e- CPD formats ( Recommendation 20 ).

National waiting lists for diagnosis

The pilot that examined whether waiting lists could be reduced by local teams being trained by a specialist ASD assessment team to undertake diagnoses was very successful and has survived in some parts of Scotland. It has been referenced by the new NICE guideline [23] on ASD in children and young people as a useful approach. However, as a model, this approach has not been taken up by other areas in the manner in which it was envisaged and in many areas waiting lists are substantial.

It is therefore recommended that an assessment of national waiting lists is undertaken to clarify the extent of delays ( Recommendation 21 ) and that the ASD Reference Group considers and responds to these findings.

Diagnostic training needs

Initiatives to address waiting lists for assessment should include consideration of further training on the use of ADOS, ADI-R, 3di and DISCO to meet increased levels of demand ( Recommendation 22 ).

Age related differences in diagnostic approaches

It is recommended that the ASD Reference Group explore the ways diagnostic processes for adults and children are different and how this should inform practice ( Recommendation 23 ).

Diagnostic directory

It is recommended that the directory of individuals and teams undertaking assessment and diagnosis of ASD in Scotland is reviewed, updated and re-distributed ( Recommendation 24 ).

Standards and scrutiny

Although the quality diagnostic standard has been widely distributed across the country what is less well known is the extent to which it is being used and the value that is attached to it by the multi-disciplinary teams that provide the service. It is recommended that a review is conducted with a view to updating and redistributing the quality diagnostic standard if it is found to continue to be of benefit ( Recommendation 25 ).

6) Wider opportunities

Access to a range of leisure, educational, health, housing and work opportunities are important throughout life and have the potential to result in improved wellbeing. There are many people with autism who would like to work but who face significant barriers in getting and keeping a job. Support will be offered through training, creating opportunities and improving access to the workplace.

Developing employment opportunities

The Scottish Government is committed to removing barriers which stand in the way of effective transitions into employment. It has developed, together with COSLA, a Supported Employment Framework for Scotland. Its aim is to provide the mechanisms necessary to support a disabled person's move to paid employment in the open labour market in a systematic and effective way. At its heart is the desire to see a more consistent, person-centred approach to supporting those who want to work. The Framework has been launched and will be further promoted amongst Councils.

To ensure that the needs of people on the autism spectrum are taken account of, there is an ASD representative on the Employment working group which focuses on employment for people with learning disability and people with ASD. There is also a very active SASN Employability Network.

The Employability team, who assisted the development of the Framework, has funded a new national project at SCLD to consider the job opportunities that are available to people with learning disabilities and those with ASD. They will highlight the challenges facing people looking for jobs and identify how councils, health boards and private companies can create employment opportunities. SCLD and SASN have collaborated on a series of Employability events hosted by local authorities in several Scottish cities.

It is recommended that the supported employment framework for Scotland is evaluated in terms of its impact on employment and employability for people with autism ( Recommendation 26 ).


The strategic context means that by their nature these recommendations are far- reaching: their intention is to drive change to ensure shifts in knowledge and understanding about autism that will result in the best possible services and in every individual with autism being met with respect, fairness, acceptance and positive aspirations that ensure meaningful and satisfying lives.

As work progresses against the two, five and ten year goals, recommendations will have an action plan, a timescale, and measures of success that take account of where we are now in order to ensure that collectively we are where we want to be at the end of the process.

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