Scottish Strategy for Autism: evaluation

4. Findings: Impact of the strategy

In chapter 3 we described the wide range of activities, and the resources that supported them, which were designed to deliver elements of the strategy’s priorities and recommendations. In this chapter, we discuss the impact of that work as reported by those who responded to the survey, took part in the virtual workshops or participated in the stakeholder interviews.

Introduction

Across all types of respondents, participants and interviewees, there were repeated comments about the limited impact of the strategy. Some of 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.

We discuss these views in more detail in chapter 5 but, despite the widely held belief that the strategy has under-delivered, contributors did attribute some positive changes as a result of the strategy. This chapter focuses on those changes.

Our first consideration looks at the impact of the strategy on local services and charities that supported autistic people and their families and carers.

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

An impetus for local areas and a high profile for autism

Local stakeholders and 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.

“The national strategy put autism front and centre and pulled everything together in one place.” Workshop participant

For many areas, this provided the needed impetus and focus that resulted in a local autism strategy and associated activities like local strategy groups and multi-disciplinary working to progress actions around autism. Contributors to this work believed 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 and carers.

“The National Strategy has highlighted the need to develop awareness and understanding of Autism, as well as the need to develop services. It has identified gaps, some of which still need attention.” Survey respondent

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.

“The national strategy led to the creation of a local strategy group and has left a legacy of a group of multidisciplinary professionals willing to work together to progress around autism.” Workshop participant

Resources and funding to develop and deliver services

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. From the workshops and survey responses we were given plenty of examples of how this translated into local activity - ranging from commissioning research to support understanding and to inform the local strategy, to increased resources to meaningfully engage and work with autistic people and family members/carers to shape local decisions.

“I can see that more and more charities and community projects gain funding to support autism-specific causes or come up with autism-inclusive ideas.” Survey respondent

In Chapter 3 we provided examples of how the funding attached to the strategy, financed additional or new local services delivered by a wide range of projects, and contributors to this evaluation named local services that had been able to support them or their family members because of this funding.

“The national strategy helped to create the only autism support we have by allowing a Third Sector organisation to deliver accessible and quality support.” Survey respondent

Resources that provide support

In the earlier chapter, we also described the resources that sat alongside the funding, in the form of ANS, NAIT and Inspiring Scotland. The skills and expertise within these organisations have helped build capacity, share good practice, support the development of specific services such as a diagnostic pathway, and facilitate networking and awareness raising amongst a wide range of third sector organisations, local government and health and social care partnerships.

“Support of ANS was important, especially in sharing what worked in other areas.” Workshop participant

“The leadership training from Inspiring Scotland was incredibly useful and supportive.” Stakeholder interviewee

“The work of NAIT is key to what has been recently achieved in improving diagnosis.” Stakeholder interviewee

This translated into some local services with staff who were better equipped and more knowledgeable providing support that was more appropriate and relevant to the needs of the local autistic population and families or carers.

Examples of these local developments and improvements include:

• creating structures like parent and carers forums to guide local work;
• establishing dedicated roles like Autism Co-ordinators to support individuals; and
• increasing capacity within existing professional teams so that specialist support could be provided without having to go out of the area.

Resources to use

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.

Workshop participants and interviewees explained that these resources provided professionals and local services with the information and guidance to support and influence their policy and practice.

They explained that with these tools, organisations and services have been able to explore what aspects of service design and delivery, provision and support needed to be developed or enhanced and improved the knowledge of professionals.

The Micro-segmentation report, again a product of the strategy, 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.

Awareness raising

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 nine 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. A few described how the campaign portrayed and celebrated autism as a difference, not a disability, which they welcomed.

“I’ve appreciated raising awareness campaigns that help people rethink their perspective of autism.” Survey respondent

Our second consideration is the impact of the strategy on the services offered to autistic people.

Impact of the strategy on services offered to autistic people

The contributors to this evaluation were able to describe changes to services and whilst there were many examples, it is important to note that some of those changes were often time-limited because of the short-term funding that enabled a service or project to operate.

Increase in volume and relevance of services

Nevertheless, some service providers and autistic people and their families or carers identified an expansion or improvement in specific services that had been of value to them or their families.

“The national strategy helped to create the only autism support we have by allowing a Third Sector organisation to deliver accessible and quality support.” Survey respondent

These changes not only related to an increase in the volume of services but also the relevance of those services and support. The workshops offered an insight into the developments and experiences of accessing services at a local level and 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. Some people also provided details about the development of stronger local networks and examples of autistic people co-producing and delivering training to professionals.

“While much remains to be done, there have been more individualised improvements in approaches used by services. Also been a stronger focus on promoting inclusive practice, understanding and empathy.” Survey respondent

New service provision

The new or expanded service that was repeatedly mentioned was the one-stop-shops. Six one-stop-shops were funded for a fixed period, early in the strategy, enabling the expansion of the successful Edinburgh model to other areas. 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 short-term funding from the strategy has meant that alternative funding was required to sustain the services and five of the six one-stop-shops secured the finance to continue to provide a vital service in those locations.

“There are small pockets of really good practice that we could be learning from and building on nationally, e.g., autism-led one-stop-shops.” Survey respondent

As well as the one-stop-shops, contributors to this evaluation named specific services that had been established, new posts within services that had been created and new partnerships with third sector organisations that had helped them and their families.

The more recent development of the post-diagnostic support (PDS) pilots was also praised by some workshop participants and interviewees. Whilst several people considered the one-stop-shop model as more relevant post-diagnostic support, others felt that, with the new pilots, there was more PDS support available now to help navigate through the various systems and access help.

More knowledgeable and skilled professionals

Although the training of professionals was a consistent concern for many contributors, in this evaluation there were clear signs that, for some, this was an area of improvement.

Training within education and schools was the most common example and these new developments included the use of the refreshed Autism Toolbox in schools, whole school training using SCERTS®^[6] and roll out of training to Speech and Language Therapists, educational psychologists and some nurseries and parents. Contributors felt that this work had resulted in greater levels of awareness and understanding in those educational and home 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, using the resources produced by NES.

For one area for example, the training was mandatory for staff in certain roles. In these cases and with these training opportunities, the contributors identified that this led to the upskilling of professionals so that they could improve the support and services for autistic people and their families and carers.

Development of diagnostic pathways

As well as better trained professionals, there were some accounts of improvements in the assessment and diagnostic pathway. 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.

However, where the changes had been made, the contributors recognised:

• the development and introduction of adult diagnostic pathways that has not previously existed;
• the involvement of a wider pool of professionals who were now able to diagnose; and
• an improved understanding of the under-representation of girls and women in diagnosis and support.

All changes these had increased capacity for diagnostic assessments in some areas or improved access to a diagnosis for sections of the autistic population.

Summary

The strategy has led to change and the development of services and support that have made a difference to the lives of autistic people and their families/carers. However, the priorities, outcomes and recommendations in the strategy were extensive and the volume of activity and investment has been substantial - for the contributors to this evaluation, the pockets of change highlighted in this chapter have not matched this ten year endeavour.

Many of the changes relied on local implementation and, even when there were positive developments identified by the contributors to this evaluation, these were often short-lived and were not consistent across the country or even within a local area.

In the next chapter, we discuss the reasons for this under-achievement and patchy implementation of the strategy’s outcomes and priorities.