Scottish Strategy for Autism: evaluation

Executive Summary

The ten-year Scottish Strategy for Autism concludes in 2021 and the Scottish Government commissioned Blake Stevenson Ltd to undertake an independent evaluation to explore the delivery of the strategy’s recommendations and priorities, its impact on the services offered to autistic people and the local services and charities that support them, and the lessons learnt that could inform future policy direction. This report presents the findings of the evaluation.

Context

Autism (also referred to as autism spectrum disorder (ASD)) is the term applied to a range of neuro-developmental conditions which all affect how an individual communicates and relates to other people. Research carried out in Scotland estimated that there are approximately 44,000 autistic people in Scotland.

There is consensus that autism exists on a spectrum and that it affects individuals differently; there can be no ‘one-size-fits-all’ definition. The challenges faced by autistic people take many forms and can affect an individual’s physical and mental health, engagement in education, access to employment and services and participation in social and cultural activities.

Scottish Strategy for Autism

The Scottish Strategy for Autism, launched in 2011, was the Scottish Government’s response to the inequalities experienced by autistic people and an acknowledgment that action needed to be taken to address them. The vision was that by 2021:

'individuals on the autism spectrum are respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives’.

In 2015, the strategy was refreshed and reframed so that it was outcome focused, under four key areas - A Healthy Life, Choice and Control, Independence and Active Citizenship. It was further refined and re-launched in 2018 with the four key outcomes continuing as the guiding themes for the final phase of the strategy (2018-2021).

Methodology

The evaluation approach included desk-based research and several activities to gather evidence and views from local and national stakeholders and autistic people and their families/carers. This involved:

• Interviewing 18 stakeholders from 14 organisations with discussions focused on the progress towards the strategy’s recommendations and priorities, the impact of the activities delivered on autistic people and the services and charities that support them, and the lessons learned
• 11 local area virtual workshops involving 140 policy makers, service providers from the public and third sectors, autistic people, and family members of autistic people with discussions centred on the impact of the national strategy and local services and what needed to change to help local services improve.
• A short online survey with 154 responses with questions covering how the national strategy had helped to focus, resource, and influence the delivery of autism services and the impact of local services on the lives of autistic people and their families

This extensive qualitative data from the interviews, workshops and survey was analysed in line with the evaluation questions and a draft report outline was agreed which shaped the structure and content of the report.

Findings – delivery of the strategy

Phase 1 of the Scottish Strategy for Autism (2011-2014)

The first iteration of the strategy contained 26 recommendations organised across six themes. The early foundation years focused on consolidation and preparation, creating frameworks for assessment, diagnosis and training, commissioning research and producing resources.

Investment underpinning this early stage of the strategy gave £1.12 million to support the development of local authority action plans and the Autism Development Fund awarded almost £5 million to 53 projects to support autistic people and their families/carers and deliver elements of the strategy.

Key deliverables and activities in this first phase included:

• A mapping project that identified existing local autism services across Scotland.
• Menu of Interventions provided a guide to interventions and support for autistic people and set out the referral and assessment process for all other services and interventions.
• Increased engagement with autistic people was carried out in several different ways: through a scoping exercise to capture best practice, through facilitation by ANS and participation in policy consultation and key decisions.
• Improved cross-agency working including ANS partnering ARC Scotland’s Scottish Transitions Forum (a national network committed to improving the experience of children and young adults with additional support needs) to develop the Principles of Good Transitions Guide and the Autism Strategy Review Group being instrumental in developing SIGN guidelines on assessing and diagnosing autism for children, young people, and adults.
• Expansion of autism training with the development of a four-tier model for classifying and standardising training, followed by an overview of good practice and an autism training plan looking at needs and gaps in provision.
• Funding for distance learning courses for professionals and parents of autistic people to increase their understanding of autism, and for NHS Education Scotland (NES) to develop an eLearning course and autism portal.
• Increased understanding of waiting times for autism assessments through research by Autism Achieve Alliance (AAA) with a national action plan to address the causes of delays.
• New measures to improve access to the workplace through targeted work, production of a summary Guide on Employment Policies and Initiatives by Autism Initiatives and funding several local projects to improve access to the workplace.

Phase 2 of the strategy (2015-2021)

From 2015, activity was focused around four strategic outcomes. Once again, the delivery of the strategy’s priorities was reinforced with funding through the Autism Innovation and Development Fund, which distributed £2,097,526 to 41 projects (2015-18), and the Understanding Autism Fund, which disbursed £435,801 to nine projects (2019-21). These funds were administered and managed by Inspiring Scotland, which also provided capacity-building support to projects throughout this period. Key progress against each strategic outcomes is summarised in the next section.

A healthy life: Autistic people enjoy the highest attainable standard of living, health and family life and have timely access to diagnostic assessment and integrated support services

This first outcome looks at diagnosis, post-diagnostic support, advocacy for autistic people and mental health policy and provision.

The Scottish Government created the National Autistic Improvement Team (NAIT), to provide support around education and inclusive practice, assessment and diagnosis and employment, in response to recommendations around diagnosis. For post-diagnostic support, sustaining the growth of one-stop-shops was established as a priority and saw a successful pilot of one-stop-shops replicated in five different locations with fixed term funding to support the roll out. More recently, the Scottish Government funded a pilot National Post Diagnostic Support Programme.

Exploring what needed to be done to support parents, and the role of advocacy services were seen as crucial to helping autistic people enjoy high standards of living and family life, as was reviewing provision in the Mental Health (Care and Treatment) (Scotland) Act 2003.

ANS produced a report exploring what needs to be done to better support parents and Scottish Government funding was used by Scottish Autism to run an advice line throughout the COVID-19 pandemic to support families. A new website helping autistic people to set up advocacy services was created, alongside the production of a policy and practice paper about autism-informed advocacy and a successful pilot on parental advocacy training.

An independent review was commissioned to explore the impact of Scotland’s current Mental Health Act on autistic people or people with learning disabilities. The report’s recommendations identified legal and practical changes which could reduce or remove the discrimination that autistic people have experienced, and the Scottish Government is considering how these recommendations should be taken forward. The Scottish Government is also working with Social Work Scotland to assist health and social care partnerships (HSCPs) to improve how autistic people’s needs are met and understood within all services to help address the lack of local services which can mean that autistic people with complex care needs experience delayed discharge or face out of area placements in order to support their needs.

Choice and control: Autistic people are treated with dignity and respect and services are able to identify their needs and are responsive to meet those needs

This outcome is focused on raising awareness among public and professionals about autism and what it means to be autistic. Recommendations centred on achieving this through awareness-raising campaigns, training, and education.

Awareness raising included:

• working with Scottish Offenders with Learning Disabilities (SOLD) to produce guides for support staff and defence solicitors on working with people with communication needs;
• establishing the Scottish Women’s Autism Network (SWAN) and the Scottish Autism’s Women and Girls Right Click Programme;
• campaigns like Different Minds; and
• highlighting all autism alert card schemes in Scotland through the ANS website.

Training around autism within health has been spearheaded by funding NES to develop a training framework and plan and deliver resources via an autism team. Specific training in diagnostic assessments has upskilled clinicians to identify and screen, perform structured diagnostic services, and undertake complex assessments. Further investment for 2021/2022 will provide additional diagnostic training opportunities.

Work in education responded to the Not included, not engaged, not involved report on the experiences of autistic children missing school. A round table discussion chaired by the Deputy First Minister led to the creation of an Autism in Schools Short-Life Working Group, with an action plan that focused on driving improvement in education from the Initial Teacher Education (ITE) programmes, wider sharing of inclusive pedagogical work and quality practice to continued support for ongoing professional practice and development. Developments included the refreshed Autism Toolbox, autism modules for teacher education and professional guides for teachers.

This part of the strategy also set out objectives around autism and ageing, which ANS responded to with the findings of their 2019 report which formed the basis of an autism and ageing six-month pilot in three local authority areas.

Independence: Autistic people are able to live independently in the community with equal access to all aspects of society. Services have the capacity and awareness to ensure that people are met with recognition and understanding

This strategic outcome included elements that supported autistic people to live independently, increased the number of autism friendly places in Scotland, enabled active travel and made sure autistic individuals have access to suitable housing.

ANS have supported several organisations in their drive to become more autism friendly through providing resources and training, and the blue badge scheme was extended to include carers of autistic people.

Ensuring the availability of appropriate accommodation for autistic people is an area that needs significant development. Two reports, one from the Scottish Government – Housing to 2040 – and one from ANS – Housing and Homelessness – acknowledged the need for adapted housing and included recommendations on how this can be achieved.

Active citizenship: People with autism are able to participate in all aspects of community and society by successfully transitioning from school into meaningful educational or employment opportunities

The fourth outcome looked at obtaining and maintaining employment, transitions planning, social security arrangements, and reducing social isolation.

Strategic support, practical advice and resources and funding have contributed to addressing the barriers to employment and helping local areas deliver employment support to autistic people. This included funding six projects to increase awareness and understanding among employers of the benefits of employing autistic individuals and more than 60 employers across Scotland are participating in these projects. Two strategic overviews have contributed to the resources available to organisations looking into employment support. This was reinforced with practical discussion through the ANS-facilitated Autism and Employability Group, which also addressed issues and identified appropriate employment support.

Fair Start Scotland (FSS), the national employment support initiative, helps people facing multiple barriers into work by offering tailored one-to-one help and advice. Skills Development Scotland, another national organisation, also had initiatives targeting people under-represented or disabled and, although there is no autism-specific data, the measures in place can support autistic people into work and potential employers so that they provide a supportive work environment.

Work to support effective transitions between key stages in life has mainly been delivered in partnership with ARC Scotland or through the activities of local projects. This has included:

• continued funding of Scottish Transitions Forum;
• supporting the development and promotion of the Principles of Good Transitions 3 and an Autism Transitions supplement, and
• trialling a training course that applies the principles into practice.

COVID-19 has exacerbated the social isolation and loneliness experienced by many autistic people because of the restrictions and reduced access to services. In recognition of the challenges resulting from the pandemic, £450,000 was provided to autism and learning disability support organisations to help support vulnerable people at risk of social isolation.

Summary

The ten-year strategy was ambitious and multi-layered to address the broad and wide-reaching outcomes and priorities that it contained. Delivery of the strategy required commitment and implementation at a local and national level, and partnership working across several sectors and services to deliver the vision and bring about change. Most of the commitments in the strategy have been actioned to some extent, some have gained more traction than others and some still need much more focus and investment for real progress to be realised.

Findings - Impact of the strategy

Across all types of respondents, participants and interviewees, there were repeated comments about the limited impact of the strategy. These comments related to its focus being too broad, a lack of authority to bring about change at a local level, and that the host of activities and projects had not led to real change for autistic people and their families/carers. However, despite the widely held belief that the strategy had under-delivered, contributors did attribute some positive changes as a result of the strategy.

Impact of the strategy on local services and charities that support autistic people

Local stakeholders, autistic people, and their family members highlighted that the national strategy provided a welcome focus and recognition of the importance of addressing autism. The strategy set expectations for local authorities to respond and consider what services they should be supporting or delivering locally. Contributors noted that in the absence of the national strategy, their local strategies would not exist and there would be no progress in any aspect of service delivery, awareness raising or support for autistic people and their families/carers. Others described the national strategy as providing a platform for dialogue and action in local areas with the key priorities shaping and informing decisions amongst public sector and third sector organisations.

As well as providing a framework for local authority and service delivery, funding and support was made available to help develop and implement this work. This translated into local activity which ranged from commissioning research to support understanding and then informing the local strategy, to increased resources to meaningfully engage and work with autistic people and family members/carers to shape local decisions.

Skills and expertise in organisations such as ANS, NAIT and Inspiring Scotland helped to build capacity, share good practice, support the development of specific services and raise awareness amongst a wide range of stakeholders and those delivering services. This resulted in some local services having staff who were better equipped and more knowledgeable, thus providing support that was more appropriate and relevant to the needs of autistic people and families/carers.

The work that took place at a national level resulted in the creation of new resources, like the Menu of Interventions and the Autism Toolbox for Education, providing professionals and local services with the information and guidance to support and influence their policy and practice. The Micro-segmentation report was identified by some contributors as a valuable evidence base, not only in helping to define the services needed and the number of people requiring support, but also in influencing decision makers and informing action.

Contributors acknowledged that having a strategy enhanced the profile of autism and they also praised the awareness raising work through the Different Minds campaign and the work of the projects in receipt of Improving Understanding of Autism Funding. They felt that, because of this work, there were more positive representations and increased understanding of what autism means and how it affects people in everyday life.

Impact of the strategy on services offered to autistic people

Some service providers and autistic people and their families/carers identified an expansion or improvement in specific services. These changes were often about an increase in the volume of services and the relevance of those services and support. There were accounts of a more person-centred, asset-based approach to supporting autistic people and genuine exchanges that resulted in a shared understanding of the issues facing service providers and service users.

The service that was repeatedly mentioned was the one-stop-shops, six of these were funded for a fixed period and many of the interviewees, workshop participants and survey respondents highlighted that the one-stop-shops were a well-used resource that demonstrated good practice and a successful approach for providing a wide range of support to autistic people and families/carers. The more recent post-diagnostic support (PDS) pilots were also praised by some workshop participants and interviewees.

Although the training of professionals was a consistent concern for many contributors, for some, this was an area of improvement. Training within education and schools was the most common example and contributors felt that this work had resulted in greater levels of awareness and understanding in those educational settings. There were other examples of how the focus on training within the strategy became a driver for local action to improve the knowledge of health and social care professionals.

As well as better trained professionals, there were some accounts of improvements in the assessment and diagnostic pathway. However, these examples sat alongside the concerns of others who had experienced lengthy delays and difficulties in accessing a diagnosis, which continued to be a key issue for many.

Discussion

Action over the ten years of the strategy has established insight into what is needed to improve and deliver appropriate services. The keystone for translating this into practice is action at a local level. For many reasons this has not occurred at the pace, breadth and spread that has been needed, resulting in inconsistency from one area to another. There are many factors that have influenced this, summarised in the next section.

Emerging themes - the delivery and implementation of the strategy

Factors that influenced implementation of the strategy at a local level

Local mobilisation was crucial in the extent to which the national strategy had an impact.

Factors affecting local implementation of autism strategy

• Leadership and commitment
• Effiective use of autism resources
• Sustaining change
• History of partnership working
• Governance and accountability

There were several factors, summarised in the diagram, that influenced a local area’s readiness to embrace the priorities and ability to undertake key activities.

These ranged from leadership and accountability arrangements, to use of autism resources and the history of partnership working.

The breadth and content of the strategy

The ambitions of the strategy have often been commended, but this has meant that the focus and work at both a local and national level has been thinly spread and pulled in different directions. Changes to systems, processes, understanding, and knowledge take time and investment, so it is not surprising that there is a substantial gap between policy aspirations and the actual support available to autistic people, families/carers.

Short-term investment

The implementation of the strategy was accompanied by a financial investment of £7.4 million disbursed to a wide range of projects. Whilst this funding was welcomed and supported a variety of well-used and valued services, many of these ceased, or elements of support were withdrawn, at the end of the funded period. Feedback suggested there should have been alternative central funding streams to fund projects or services that evidenced a successful and positive impact.

Nature of engagement and partnership working

Responding to the needs of autistic people was best achieved through collaboration and partnership working at a local and national level and with autistic people. However, the longstanding frustrations among autistic people/families/carers and service providers about the difficulties accessing services and their experience of battling for appropriate support, has resulted in varying levels of mistrust and exasperation, an additional challenge when building partnerships and collaborating.

Influencers of policy at a local and national level

Contributors highlighted the importance of widening the pool of people involved in decision making at a local and national level. There was repeated mention of the same individuals and representatives from the larger third sector organisations engaged in working groups and influencing policy decisions.

Emerging themes - the impact of the Scottish Strategy for Autism

Despite the volume of activity, there is still some way to go to deliver on the vision, implement and then embed the service changes that will improve how autistic people are supported in Scotland. From this work, there were consistent issues, raised by contributors, about the impact of the strategy, in relation to the following:

The challenge of capturing progress or change

Inconsistent adoption and application of the strategy’s priorities across Scotland have made it difficult to capture an accurate picture of the service delivery changes that have happened in practice, compared to what is documented.This fragmented picture of support was captured by a workshop participant who described “islets of good practice dotted across the country”.

Sharing local good practice

Not only did the contributors agree that it was difficult to get a clear picture of what had happened at a local level across all areas, they also felt that there needed to be more opportunities to showcase work and share their practice. Whilst there was the local autism leads network there was not a similar forum for third sector organisations and they wanted to share their examples of successful collaborations and the alternative approaches happening at local level.

Persistent shortcomings in particular service delivery and support

Despite the pockets of progress and “islets of good practice”, gaps were consistently identified in particular services or support, most notably with: diagnosis and post-diagnostic support; transition points; support for autistic adults; and employment.

The impact of COVID-19

The pandemic meant that most face-to-face services paused and, where possible, delivery moved online. Whilst the move to virtual services exposed the inadequacies of IT systems it also forced innovation and creativity to adapt services. For some, this meant services were more accessible and bespoke but for others, the changes were too great, and they disengaged with services. There was hope that the creativity and flexibility shown by some services would become a regular feature of future service provision.

Disability vs neurodiversity

There is a lack of consensus with regards to how autism should be considered, and a key issue for the sector is the differing views on autism as a neurodiverse condition and not as a disability. There were also concerns expressed about the bringing together of the autism and learning disability agenda and a consistent view of the importance of maintaining a specific strategy/plan for autism services.

Lessons gleaned for future policy direction

There are lessons from the implementation of the ten-year strategy that can inform decisions about the future policy. The Scottish Government could:

• narrow the focus of future work so there is more likelihood of effective delivery and sustainability;
• provide clarity about actions and implementation;
• explore what evidence or data could be routinely collected to inform the local and national picture;
• provide clarity on where autism sits within government policy;
• consider focusing on areas that need to see the greatest change – diagnosis, transitions, support for autistic adults, employment;
• place stronger requirements on local authorities to deliver;
• review who is contributing to the discussions and influencing policy; and
• build on the positive relationships that exist.

Conclusions

The Scottish Strategy for Autism supported and funded a wide range of activities and developments at a local and national level designed to bring about improvements in services and support for autistic people and their families/carers.

After ten years, valuable resources have been created and new and additional services delivered. However, real change for many autistic people, both in how they engage with services and in how they are supported to live productive lives, is not as evident. To have a greater impact, the services and support need to have greater reach, become embedded and be sustained.

Integration authorities play a crucial role in the degree of strategic impact because most services are designed and delivered at a local level. Until appropriate provision is commonplace, there will be a lack of accessible and relevant local autism services. After ten years, there is an increased understanding and knowledge about what needs to change and what works. It is evident that to enable more autistic people to live a full and meaningful life, future policy direction should focus on a targeted number of key areas to drive systemic change, rather than many piecemeal projects. Systemic change can only be realised in true partnership with autistic people and through collaboration across services and sectors. The current nature of engagement and tension between different interest groups spills into the way in which they can work together. This needs to be recognised and addressed for future collaboration to be effective.