Autism Strategy 2014-2024

“Our vision is to support and empower individuals and families affected by autism. We will aim to raise public and professional awareness of autism and strive to help children and adults with autism to make choices and achieve their potential in their home, school and community.”

Autism is a national priority and the vision of Scottish Government is that individuals with the autistic spectrum order are respected, accepted, treated fairly, valued by their communities and are able to have satisfying and meaningful lives. In East Dunbartonshire it is our commitment that people enjoy a high quality of life and that all age groups are served by a set of public and voluntary services that are integrated and complimentary, and focused on outcomes. Underpinning this strategy are values from the Scottish Autism Strategy that have been recognised as important:

• Dignity – people should be given the care and support they need in a way which promotes their independence and emotional well-being and respects their dignity.
• Privacy – people should be supported to have choice and control over their lives so that they are able to have the same chosen level of privacy as other citizens.
• Choice – care and support should be personalised and based on the identified needs and wishes of the individual.
• Safety – people should be supported to feel safe and secure without being over protected.
• Realising potential – people should have the opportunity to achieve all they can.
• Equality and diversity – people should have access to information, assessments and services; health and social care agencies should work to redress inequalities and challenge discrimination.

This strategy has been developed by East Dunbartonshire Multi-Agency Autism Steering Group in partnership with key stakeholders including young people and adults with autism and their carers.

It sets out how we plan to take action to achieve a range of objectives that have been agreed as priorities. These are based on the principles and Recommendations of the Scottish Autism Strategy, scoping work carried out by the National Autism Services Mapping project, and a comprehensive Local Needs Assessment commissioned from Figure 8 Consultancy, an independent research organisation.

1. The Scottish Autism Strategy also provided 10 indicators for current best practice in the provision of effective Autism Spectrum Disorder (ASD) services, these include: A local Autism Strategy developed in co-operation with people across the autism spectrum, carers and professionals, ensuring that the needs of people with ASD and carers are reflected and incorporated within local policies and plans
2. Access to training and development to inform staff and improve the understanding amongst professionals about ASD
3. A process for ensuring a means of easy access to useful and practical information about ASD, and local action, for stakeholders to improve communication
4. An ASD Training Plan to improve the knowledge and skills of those who work with people who have ASD, to ensure that people with ASD are properly supported by trained staff.
5. A process for data collection which improves the reporting of how many people with ASD are receiving services and informs the planning of these services
6. A multi-agency care pathway for assessment, diagnosis and intervention to improve the support for people with ASD and remove barriers
7. A framework and process for seeking stakeholder feedback to inform service improvement and encourage engagement.
8. Services that can demonstrate that service delivery is multi-agency in focus and coordinated effectively to target meeting the needs of people with ASD
9. Clear multi-agency procedures and plans which are in place to support individuals through major transitions at each important life-stage
10. A self-evaluation framework to ensure best practice implementation and monitoring.

These indicators of best practice were used as the foundation for the scoping carried out by the National Autism Services Mapping project in East Dunbartonshire. Through a number of workshops and questionnaires a picture of autism services and issues was built up. This was published in September 2013. It indicated that, on a scale of 1 to 4, with 1 indicating “work just begun”, 2 “made a start”, and 3 “good progress, and 4 “completed”, overall East Dunbartonshire achieved between 2 and 3.

Autism is a lifelong developmental disorder which is sometimes referred to as autistic spectrum disorder (ASD). Autism affects how an individual understands, communicates and relates to other people and environments and can include conditions such as classic autism and Asperger’s Syndrome.

It is termed a spectrum because people who are affected by this condition will have differing experiences of how it impacts on their lives. There will be some individuals, for whom the condition will cause little disruption, allowing them to function independently while others may need some specialist support. There are others, however, who may require lifelong specialist input and supports, with many of these individuals also having a diagnosed learning disability.

Whilst there is a recognised diversity within the spectrum there is also some commonality for individuals affected by autism; the common factors experienced by most individuals with ASD are usually termed as being the ‘Triad of Impairment’. This relates to three areas where ASD may specifically impact on someone’s life.

Individuals with autism sometimes find social communication difficult. This could mean difficulties with:

• Understanding and communicating with verbal and non-verbal language
• Understanding jokes, sarcasm or use of irony
• Understanding changes in facial expression and tone of voice
• Understanding the ‘give and take’ nature of general social communication and when to end a conversation or choose topics.

Although many individuals with autism would like to be sociable and maintain social relationships they find it difficult to initiate or sustain these relationships. This could mean a difficulty in:

• Recognising emotions and feelings in other people
• Expressing personal emotions and feelings
• Understanding social rules – such as body space and distance confusion over how to give or receive comfort. This can manifest in what may seem an inappropriate manner.

This is not to be confused with a lack of imagination – as many great artists, musicians and writers may have an ASD. More specifically this may mean difficulty with imagining and planning for the future and can include:

• Difficulty in predicting behaviours and events
• Coping with new or unfamiliar situations
• The ability to understand and interpret others actions, thoughts and feelings.

Although the triad of impairments can have some impact, to a greater or lesser degree, on all individuals on the spectrum, the response from specialist or mainstream services should be based on how they affect each individual. A generic term of autism will not provide a template for how all individuals should be supported, but an awareness of how the three main impairments could affect an individual’s interaction in social, educational and work settings is certainly a step towards more inclusive services.

The characteristics of autism vary from one person to another but as well as the three main areas of difficulty, people with autism may also have:

• Love of routines
• Sensory sensitivity
• Special interests.

An effective care pathway incorporating diagnostics and assessments may help to determine in which areas an individual with ASD could need support; development of awareness and inclusive responses across services may then help to reshape perceptions, thus promoting better understanding, increased choice and more independence.

This strategy hopes to recognise the different experiences of individuals with ASD, provide information on existing supports and services and promote a vision from East Dunbartonshire’s partnership setting out how we can continue to develop and promote inclusive services and responses.

“What I tell them is that the potential of their child is unlimited…just like any other child. What our challenge to do is to find ways to access that potential. That’s what all these interventions are about. I think we know enough now that people with autism leading a fulfilling and productive life can become the rule as opposed to the exception. It’s really a matter of getting the resources to the people who need it.”

(Dr Stephen Shore, 2011, cited by S. Frkovic, in Personal Experiences of Autism)

According to The National Autistic Society around 700,000 people in the UK may have autism or more than 1 in every 100 population. This is approximately 1.1% of the population (taken from the 2011 UK Census figures).

In comparison the prevalence figures for autism based on the population figures in Scotland’s 2011 Census are:

Population of Scotland - 5,295,400
Prevalence of Autism - 58,249

The Scottish Society for Autism estimated East Dunbartonshire’s prevalence rate for Autism to be 949. This was based on the 2006 population of 105,460. Having regard to the National Autistic Society’s and the Scottish Society for Autism’s estimations of prevalence and local information referred to in the tables below, it is acknowledged that these figures under-represent the profile of autism in East Dunbartonshire. The identification of autism and its diagnosis is a major priority within this strategy.

Within this population, the National Autism Service Mapping project profile for East Dunbartonshire notes that the number of children and young people with an Autistic Spectrum Disorder recorded is 232. This is approximately 11% of the total number of children and young people with Additional Support Needs recorded (ASN).

The number of children and young people having Additional Support Needs (recorded):

In Scotland - 117,818
In East Dunbartonshire - 2134

The number of children and young people having an Autistic Spectrum Disorder (recorded):

In Scotland - 8,650 (7.3% of ASN population)
In East Dunbartonshire - 232 (10.8% of ASN population)

The largest % of adults with autism known to services in East Dunbartonshire are within Learning Disability services. These individuals are reflected within eSAY returns which are only confined to this client group. Out of the number below, 191 individuals (2013 figures) are known to Social Work with a classification of autism on the CareFirst social Work electronic customer database system.

The Scottish Strategy for Autism set out an agenda for improving the lives of people with autism, their families and carers. At the launch of the strategy the Scottish Minister for Public Health announced additional investment of £13.4 million over a 4 year period. Some of this funding was committed to a scoping exercise to map out autism services across each local authority area and to look at areas of service improvement and coordination.

The purpose of this scoping was to:

1. Consult with people with autism, their families and carers, service providers and local agencies
2. Map out existing autism service provision in all local area in order to build up a national and local picture
3. Identify priority areas for action that reflected local need
4. Work collaboratively with local partnerships, councils, NHS, criminal justice, third sector organisations and other relevant public bodies;
5. Provide local authority with a ‘Service Map’ of their area, to inform their Autism Action Plans.

Led by a mapping co-ordinator provided by the National Autistic Society (NAS) information was gathered in three ways: desktop research, online questionnaires and workshops. A range of people and groups were contacted, including people living with autism, their families and carers, statutory organisations, service providers and other multi-agency stakeholders. The report produced by the National Mapping Project evaluated East Dunbartonshire in terms of its progress to date against the ten indicators of good practice set out within the national strategy. Although this exercise provided a snapshot of the picture across East Dunbartonshire with regards to autism it was not a complete picture of the area.

Each local authority area received £35k one off funding to develop a local autism action plan. In order to properly inform the way forward, the Multi-Agency Autism Steering Group commissioned Figure 8 Consultancy to undertake a comprehensive needs assessment (both identified and projected), issues, current service provision, and the views of service users, parents, carers, staff and stakeholders. The report provided by Figure 8 details recommendations that underpin the priorities set out in this strategy. A copy of the Executive Summary and the full report is available on request. (Hyperlink to be added once the summary and report are available online.)

The Figure 8 report details 27 recommendations across the following areas:

The national and local mapping highlighted a number of areas where development is required. It also emphasised that East Dunbartonshire has a range of services which, although not all are autism specific, provide significant support to individuals with autism (Appendix 1). The reports also highlights a number of areas where ‘things that are working well’ in East Dunbartonshire.

The following tables summarise the main conclusions from both the National Autism Services Mapping Project (2013) and the action research carried out for East Dunbartonshire by Figure 8 Consultancy Services (2014) in relation to:

• What do we do well?
• Where could we do better?
• What improvements were recommended?

What do we do well?

• Good links between practitioners across agencies in terms of sharing assessments and other information
• Language and Communication Units within schools are well regarded
• Local Area Co-ordinators are effective in raising awareness within communities and across agencies (including mainstream organisations such as employers) and in adopting a preventative approach
• Good progress has been made in streamlining forward planning for young people with autism in transition to adult services – although this has so far been focused on Social Work and Education and needs to be widened to other agencies
• Support for people with autism and their carers from local non-specialist voluntary organisations including Ceartas (advocacy) and Carers Link.

Where could we do better?

• No single local database of people with autism and inconsistent recording across agencies with three different systems across Education, Social Work and Health
• Unclear if current data accurately reflects actual prevalence of autism and potential demand for services - accuracy of data affected by whether based on a formal diagnosis
• Feedback from carers emphasises how important knowing a diagnosis is to them in moving forward - can be affected by delays/waiting times for assessment and variation in the importance attached to screening/diagnosis by clinicians
• Carers report an absence of post-diagnosis support and a loss of ‘specialist’ support once diagnosis established
• No local multi-agency care/support pathway across children and adults
• Carers’ view that to no single point of information locally or single point of contact to access support and resources
• People with autism who do not also have a clear diagnosis around mental health or learning disability do not have a clear route to resources and are much less likely to receive a smooth and equitable access to available services
• Carers reported less adjustment made by mainstream schools with a lack of awareness around autism for some teachers
• Mainstream resources (such as leisure services) need to become more autism-friendly
• Carers requesting a more flexible range of social supports – both people with autism and their carers report feeling socially isolated – the lack of a geographical spread of available resources can disadvantage some in terms of travel and transport links
• Lack of specialist assistance within existing employment support projects locally for people with autism
• Carers and service users report an overall improvement in awareness but inconsistent across all agencies and no co-ordinated multi-agency training plan - almost all agencies responding to National Mapping Project felt more training was required
• Intervention with ‘hard to reach’ groups of people with autism e.g. older adults with no previous diagnosis; those who misuse substances or known to criminal justice system.

What improvements were recommended?

• Improve access to advice and information around autism and local resources and work towards identified points of contact
• Establish localised pathways for children and adults around diagnosis, treatment, care and support - to provide clearer expectations for people with autism and their families
• Promote the earlier identification of autism via raising awareness amongst practitioners, facilitating quicker diagnosis and streamlining assessment processes across agencies
• Continue to develop access to self-directed support options for people with autism and to support carers - will involve a wider, more flexible range of providers and services
• Clarify responsibility for the on-going specialist clinical care of people with autism who have Aspergers and /or associated mental health problems (but who do not have an intellectual impairment) ensuring that community mental health teams have the capacity and expertise to offer a service to young people in ‘transition’ and older adults
• Scope the overall training needs across agencies and work towards a locally integrated training plan
• Explore options for a more ‘community based’ approach to provide improved support for people with autism and their carers (including self-help group, self-management and peer support) utilising and where possible expanding existing resources such as the ‘community assets’ project and the deployment of Local Area Co-ordinators
• Improve access to mainstream resources such as leisure, housing and further education by promoting adjustments and an autism-friendly approach and facilitating travel arrangements
• Ensure that local ‘support into employment’ projects are geared up to assisting people with autism.

• Review current information systems with a view to streamlining and developing a joined up approach and accurate data
• Work towards developing a clear pathway and accountability for the diagnosis, treatment, care and support of children, young people and adults with autism, ensuring the engagement of relevant stakeholders
• Ensuring the route to diagnosis is more consistent, accessible and visible, whilst recognising the needs of individuals without a formal diagnosis
• Develop a single point of access for information for individuals with autism, their families, carers and practitioners
• Ensure there is a robust transitions process in place at each important life stage with clear responsibility across health, social work and other relevant agencies
• Develop a post-school framework as part of the transitions process by engaging with local further education facilities, employment agencies and other local organisations in order to maximise opportunities for people with autism
• Focus on supporting those individuals with co-existing problems around mental health, substance misuse and offending behaviour as part of the wider pathway, in particular those regarded as ‘hard to reach’ and non-engaging
• Enable people with autism to feel safe in their communities via measures around self- protection and links with community safety agencies
• Work with the local community in relation to a wider social integration agenda; promoting local assets through the East Dunbartonshire Community Asset Map and raising awareness of autism e.g. use of Autism Awareness week
• Review existing employment support programmes, the impact of welfare reform and ways to improve engagement with local employers across all care groups with a specific focus on autism
• Ensure that people with autism and their carers are enabled to actively engage with mainstream services e.g. leisure and culture
• Address the geographical challenges, ensuring equitable access to resources and the development of outreach/mobile support
• Work in partnership with local organisations to raise awareness and provide autism specific support if required
• Undertake a multi-agency training needs assessment and develop a strategic training plan
• Promote access to self-help groups and peer support for individuals with autism, their families and carers including use of self-directed support
• Develop meaningful consultation involving individuals with autism, parents and carers in the planning and evaluation of services
• Ensure that the needs of people with autism are reflected in local housing plans
• Develop a self-evaluation framework to ensure best practice implementation and monitoring including updating the existing action plan
• Ensure that people with autism and their carers benefit from services that are integrated and complimentary – a multi-disciplinary approach which is clear and accessible to those who make use of it.

This Strategy covers a ten year period; building on what we currently have in place, with much still needing to be accomplished. East Dunbartonshire is committed to driving forward the key objectives agreed by the Multi-agency Autism Steering group based on the scoping and recommendations from the Figure 8 needs assessment as well as the work of the National Mapping Project.

Our goal is to make sure we have addressed these objectives by the time the Strategy concludes. These objectives will be divided into goals to be completed within three timeframes; two years, five years and 10 years. An action plan (Appendix 3) has already been developed that covers a range of these objectives, one of the next steps will be to ensure this action plan reflects the entirety of these objectives and sets clear timescales for each. The Strategy will be delivered and monitored through the Multi-Agency Autism Steering Group.

Below is a snapshot of the variety services which provide support to individuals with autism in East Dunbartonshire.