Scottish Strategy for Autism: evaluation

5. Discussion and conclusions

In Chapter 3, we described some of the extensive work that has been carried out and the resources committed to delivering the priorities and recommendations within the Scottish Strategy for Autism. In Chapter 4, we identified how that activity has led to change and the impact on services designed to support autistic people, their family and carers.

Emerging themes in relation to the delivery and implementation of the Scottish Strategy for Autism

Whilst the strategy was ambitious, much of the work has been done to understand what is needed to improve and deliver appropriate services. The keystone for translating the changes into practice is the required 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, and these are discussed here in more detail.

Factors that influenced implementation of the strategy at a local level

The local response and mobilisation was crucial in the extent to which the national strategy had an impact. A number of factors heavily effected the local area and readiness to embrace the priorities and ability to undertake key activities and collaborate to achieve short term changes. These factors are discussed in turn.

Leadership and commitment – the progress in local areas was dependent on the individuals driving forward the work and securing commitment from their local leadership to be able to push through the strategy, create partnerships and engage the wide range of local services that needed to be involved in the programme of change. For those involved in implementing changes, without the visible top level support taking forward service developments could be delayed or stall.

History of partnership working – in areas with a tradition of working well with third sector partners and/or engaging with autistic people and their families/carers, developing local strategies and shaping services was an easier task because the relationships were already established. In areas that had not engaged previously with the local autistic population or relationships with the third sector were more fragile, it took more time and effort to agree on the necessary changes and progress developments locally.

Effective use of autism resources – all local authorities received £35,000 to help develop their local strategies and they received mapping reports to inform their decision making. Some used this funding for various activities - to work with local people, create forums and working groups, develop approaches and pathways into services, and allow dedicated time to draft and then secure approval of their local strategy. For others, their work did not lead to a finalised and tangible output and so, in some areas, the local strategies have remained in draft form since 2014.

There were also resources that local areas could access, from ANS facilitated local leads network to the guidance within the Menu of Interventions. The engagement with and use of these valuable resources also varied from area to area.

Sustaining change – over the ten years of the national strategy there have been changes on a national scale, from austerity to a global pandemic and locally from the creation of integration authorities to changes in key personnel, all of which resulted in shifts in responsibilities, priorities and commitments levels. Even in areas that created their first local autism strategy, the impetus and focus had often waned by the time a second strategy was due to be developed.

Local commitments to fund autism services were also less common, the one-stop-shops were a good example of a successful and valued model for supporting the local autistic population but, once Scottish Government ended, most local funders were not able, or willing, to offer funding to continue the service.

Governance and accountability – the national strategy did not place mandatory requirements on local authorities to develop and deliver their local strategies but used encouragement, support and resources to bring about action at a local level. The local strategies did not need to be submitted or reviewed and for areas that did not prioritise or pursue real change, there were no consequences for this inaction.

The breadth and content of the strategy

The original strategy was produced by several authors and tried to address the needs and interests of many, and needed to be far reaching to address the multitude of issues that autistic people and families/carers faced over their lifetime.

Contributors to this evaluation often commended the ambition within the strategy, but it has meant that the focus and work at both a local and national level has been thinly spread and pulled in different directions.

So many of the changes required were to systems, processes, understanding and knowledge which takes time and investment, so it is not surprising that there is a substantial gap between the policy aspirations and the actual support available to autistic people and families and carers.

Short-term investment

The implementation of the Scottish Strategy for Autism was accompanied by a financial investment of £7.4 million and, in the earlier chapters, we described the rounds of funding that were 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.

Some participants and survey respondents explained that for them, services had diminished over the ten-year period and there should have been alternative central funding streams to fund projects or services that evidenced a successful approach that was having a positive impact on autistic people or families and carers.

Nature of engagement and partnership working

From the discussions, the successful delivery of projects and services that meet the needs of autistic people was best achieved through collaboration and partnership working at a local and national level and with statutory and third sector organisations working with autistic people.

Working nationally and locally, across sectors and disciplines requires healthy collaborative working and what was evident undertaking this work was that 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.

This is an additional challenge when building partnerships and sometimes led to unproductive discussions. Our evaluation team experienced the extent of adversarial dialogue in the way in which people engaged with us, how they communicated with, and about, others and it did not appear to be unusual in the sector. Effective partnership working is crucial to bring about the changes needed but it will be difficult to work collaboratively if acrimonious exchanges remain commonplace.

Influencers of policy at a local and national level

Interviewees and workshop participants 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, the ‘usual suspects’, engaged in working groups, championing their particular interests and influencing policy decisions.

They acknowledged that it was challenge, that it is a crowded, yet fragmented, autism landscape of third sector organisations with differing views of how autistic people should/could be supported. However, it was felt that a minority monopolised the conversations at all levels and the balance of influence needed to shift.

These interviewees and workshop participants asked for a wider selection of contributors who had a lived experience at all levels and stages of life in order to expand the voices and views that were being heard around the decision making tables at local and national level.

Emerging themes in relation to the impact of the Scottish Strategy for Autism

As already described, 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.

A challenge to capture 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.

From the discussions with interviewees and workshop participants and comments from survey respondents, improvements in accessing services or absence of any service varied from one area to the next. 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.

They acknowledged that the local autism leads network, facilitated by ANS, supported local government and health and social care partnership representatives to do this, but interviewees and workshop participants from local third sector organisations said they had no platform to do so.

They wanted to share the examples of successful collaborations with local agencies and autistic people to design and deliver local services, and the alternative approaches happening at local level but felt ‘over-shadowed’ by the larger charities and their limited mechanisms to gather information and showcase widely.

Persistent shortcomings in particular service delivery and support

In Chapter 3, we described the progress and improvement in some areas, for some people but we acknowledged that, for many, their experience was not a positive one. Despite the pockets of progress and “islets of good practice”, gaps were consistently identified, in particular with:

• Diagnosis and post-diagnostic support – there were accounts of difficulties accessing a diagnosis, long waiting lists, no diagnostic pathway in places (especially for adults) and debates about where diagnosis should sit and who should take ownership. When a diagnosis was given, for some it was a gateway to understanding and support, but others there was an absence of accessible post-diagnostic support which was needed through their lifetime, not just as a child or young person.
• Transition points – although there was recognition of improved resources and knowledge about the transition process, there were several accounts of the negative experiences of the transition from child to adult services, with one workshop participant describing their son’s experience like ‘falling off a cliff’. To improve the transition process, it was suggested that there needed to be more extensive and earlier planning for the change, greater overlap between the services and where they intersect, and a continuity of support to minimise the disruption and distress.
• Support for autistic adults – Contributors to this report were frustrated that many autistic adults must fend for themselves and, as autism is a life-long condition, the need for a whole-life approach to supporting someone should be recognised so that appropriate services are available as a person gets older. Consideration also needs to be made for autistic people with ageing parents who might be their mainstay – what happens when they are no longer around?
• Employment – support and access to meaningful employment opportunities, for those who wanted to pursue work, was described as very challenging and, even when a role was secured, sustaining employment required support and greater awareness and understanding from employers. Participants were aware of some of the funded projects that had improved the prospects for some local employees, but it was piecemeal and small scale. It was felt that a more significant focus and concerted effort at a local and national level was needed to address and improve the routes into and support during employment and this should be for all ages, not just the under 25s.

The impact of COVID-19

The pandemic meant that most face-to-face services paused and, where possible, delivery moved online. Workshop participants explained that the move to virtual services exposed the inadequacies of some IT systems and their ability to handle large volumes of information or bring together significant numbers of people in data complaint ways.

The impact of COVID-19 forced innovation and creativity to adapt services and move them online. For some this meant they were more accessible, with autistic people accessing them from their own home, a place they were very happy to be, for others, the changes were too great, and they disengaged with services.

It was acknowledged during several of the workshop discussions that although COVID-19 brought about significant change in the way in which services operated, people and processes adapted in a short space of time, and with the additional flexibility, some autistic people experienced a more bespoke support package. Some contributors identified that, where their programmes were successfully delivered online, these will continue with a blended approach of virtual and face-to-face support once restrictions and physical distancing is lifted.

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 was strong resistance to learning disability and autism strategies being merged. Autism within the Scottish Government currently sits alongside learning disability and some would prefer a broader neuro-diversity approach to reflect autism as a neuro-developmental difference.

Throughout the discussions, the concern about bringing together autism and learning disability was repeatedly raised. A minority of autistic people have a learning disability and whilst there is some overlap in the disadvantages both populations face, the types of support and services to address their needs differ. Whilst some felt that being an autistic person and having a learning disability meant easier access to services, the majority of autistic people do not have a learning disability and were frustrated with this focus.

There were 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 and not combining the two.

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 which will mean less might be achieved but there is more likelihood of effective delivery and sustainability;
• provide clarity about actions and implementation so that there are identified achievements within a clear plan;
• explore what evidence or data could be routinely collected to inform a picture of what is happening locally and nationally;
• provide clarity on where autism sits within government policy – lack of consensus of how autism should be considered, the disability vs neurodiversity debate;
• 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, especially if funding is provided to support them;
• review who is contributing to the discussions and influencing policy so that the usual suspects are not always around the table and the contributors are from a wider pool to reflect the small and large charities supporting autistic people, and individuals with a lived experience from across the ages; and
• build on the positive relationships that exist – the nature of the dialogue has on many occasions been acrimonious and hostile, require a standard of acceptable engagement if people want to genuinely be involved in progressing this agenda in a more positive way.

Conclusions

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

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

Integration authorities play a crucial role in the degree of impact because most services are designed and delivered at a local level and until appropriate provision is commonplace, there will be a lack of accessible and relevant local autism services.

At this ten year pause point, there is an increased understanding and knowledge about what needs to be change and what works. To enable more autistic people to live a meaningful and fuller life, the future policy direction should focus on key areas and drive systemic change rather than piecemeal projects.

This can only be achieved in true partnership with autistic people and collaboration across services and sectors. The current nature of engagement and tension between different interest groups spills into the way in which they are able to work together and this will need to be recognised and addressed if future collaboration is to be effective.