The Scottish Strategy for Autism: engagement analysis

1. Introduction & Background

In 2010 Hugh O'Donnell MSP introduced a Private Member's Bill to the Scottish Parliament – the Autism (Scotland) Bill. Then – as now – there was no legislation that related specifically to autistic people. The Bill's objective was to place a statutory duty on the Scottish Government to 'prepare and publish a strategy to meet the needs of children and adults with autism; consult with appropriate organisations and people; and issue statutory guidance to local authorities and health boards on their services for children and adults with autism'. ^[1]

Stage 1 of the Bill commenced on 10 November 2010, with the Education, Lifelong Learning and Culture Committee as lead Committee. The Committee considered a substantial body of evidence from autistic people, their families, carers and support organisations. Those who participated in the Committee's evidence sessions generally welcomed the idea of introducing a national autism strategy, and the Committee itself was convinced such a strategy could help ensure that services were delivered more effectively for autistic people. ^[2]

Later in 2010, following the Bill's introduction, the Scottish Government published a draft autism strategy for consultation - Towards an Autism Strategy for Scotland. The Government argued that legislation was not required to underpin such a strategy, while existing inclusive legislative measures already made provision for people with additional support needs, including autism. ^[3] While those in favour of the Bill said these existing measures had not been implemented effectively, the Committee felt there had not yet been sufficient passage of time to properly evaluate their impact. The Committee also said it was inappropriate to introduce new legislation as a countermeasure to the poor implementation of existing legislation. ^[4]

After due consideration the Committee concluded that the Autism (Scotland) Bill, as it was introduced, would not create robust enough obligations for local authorities and health boards to deliver meaningful change to services for autistic people. Resources, the Committee said, would be better used if they focussed on implementation of existing legislation and duties. As such, the Committee recommended to Parliament that the general principles of the Bill not be agreed to, and the Bell fell at Stage 1. ^[5]

The Scottish Government's consultation on a national autism strategy concluded shortly before the Autism (Scotland) Bill fell. In total 130 written responses were received, six of which were collective responses derived from consultation events attended by approximately 102 individuals. The Scottish Government analysed this evidence and published a report on its website, and used the evidence gathered to inform the development of the final version of its strategy. ^[6]

The Scottish Strategy for Autism was published jointly with COSLA in 2011, with the Scottish Government committing £13.4 million over four years to improve the lives of autistic people, their families and carers, and to build on improvement and access to autism services. The original strategy document set out 26 recommendations and the vision 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'. ^[7]

In 2014 the Scottish Government published a report on the progress made by the autism strategy during its first two years – the foundational phase. ^[8] Significant progress was made during these early years. Key developments included the development of a Menu of Interventions – a guide to help autistic people, their families and carers identify available advice and support – and a mapping exercise, which sought to 'map out' and better coordinate local autism services. ^[9] The mapping exercise coincided with a one-off investment of £35,000 for each local authority in Scotland to allow them to develop their own local strategy and action plan. Alongside this, £4.5 million was set aside for an autism development fund, the purpose of which was to encourage local and national organisations to develop projects to improve the delivery of local autism services. ^[10]

In the year following the publication of the foundational progress report, the autism strategy was refreshed and reframed into an outcomes approach for the period 2015 to 2017. These new outcomes – healthier life, choice and control, independence and active citizenship – and their attendant priorities ensured the Scottish Strategy for Autism was not only better aligned with government policy and activity, but also better placed to drive forward the realisation of its vision for autistic people and their families. ^[11] Further progress toward this goal has been made since the launch of the outcomes framework. Among other achievements, NHS Education for Scotland has developed an Autism Training Framework for those working in health and social care and new SIGN guidelines on the assessment, diagnosis and interventions for autism spectrum disorders have been published. ^[12]

Now, passed the strategy's halfway point, and conscious of the significant shifts that have taken place in Scotland since 2011, including the devolution of new powers, the Scottish Government sought to engage with autistic people, their families and carers and those with a professional interest, on the development of the strategy's next and final phase.

Engagement Exercise

From 18 October 2017 to 29 November 2017 we ran an online engagement exercise to gather in views on the final phase of the Scottish Strategy for Autism. Over the course of these six weeks we received 662 responses. Alongside our online questionnaire we held four engagement events, which were attended by more than 600 people. This means well over 1,000 people took part in our engagement activity.

Respondent Profile

Of the 662 responses to our online questionnaire, 92 per cent were from individuals and the remaining eight per cent (n=56) from organisations. It can be inferred from the content of the responses that autistic people, their carers and family members, as well as professionals, participated online; responses were also received from organisations across the third and public sectors. The online engagement tool, other than asking whether the participant was replying as an individual or on behalf of an organisation, did not seek to collect demographic information i.e. whether the individual was responding as a parent or carer, or as someone on the autistic spectrum. As such, no steps have been taken to quantify, for example, how many autistic people participated.

Questions and response rate

The online engagement tool asked the following five questions:
1. how can we ensure autistic people and their families enjoy healthier lives?
2. how can we ensure autistic people have proper choice and control over the services they use and in their lives more generally?
3. what can we do to ensure autistic people can live independently?
4. how can we ensure autistic people are active citizens, fully integrated and able participate in their communities and society?
5. what one single thing could the Scottish Government do to improve autistic people's lives?

The first four questions are linked to the strategy's strategic outcomes, which will continue to underpin the strategy as it moves into its final phase. Question five sought opinions on what one thing the Scottish Government could do to improve autistic people's lives. The response rate to each question is shown in Figure 1.

Figure 1: Response rate by question.

Methodology

Responses to the online engagement were submitted using the Scottish Government platform Citizen Space, or by email or hard copy. In total 602 responses were submitted via Citizen Space, while 60 were received either by email or in hardcopy form; these were added to the online responses for the purposes of this analysis. Hardcopy or email responses that arrived after the online facility closed on 29 November 2017 were accepted and are included in this analysis. In the interests of transparency, the analysis of the feedback we received at our four engagement events was carried out discreetly from the analysis of our questionnaire responses, and can be found at chapters 12 and 13. This current section is concerned primarily with our approach to analysing information from the online tool, which includes hardcopy and email responses.

While the format of our engagement was built around questions that focused on the Scottish Strategy for Autism's strategic outcomes, plus one general question, the natural overlap and fluidity between the outcomes mean that participants raised particular issues under one or more or all of the outcomes. For instance, some participants raised the issue of social security under each outcome, as well as under the fifth question, so that for them social security is viewed as being an enabler of a healthier life, choice and control, independence and active citizenship. Similarly, many of the issues that participants raised at our engagement events were raised by those who responded to our questionnaire.

Given the fluidity and interconnectivity of the strategy's outcomes, our analysis is presented thematically, both for our questionnaire and the engagement events, rather than on a question-by-question basis. The open-ended nature of the five questions we asked meant that a great deal of the information we received is anecdotal and rooted in personal experience. While this approach did not place any restrictions on what issues people raised and under which question/outcome they raised them, it equally meant that analysing the information on a question-by-question basis was impractical. Such an approach would have resulted in significant repetition throughout this document. By way of example, it would have been necessary to analyse social security under each outcome, as well as under question five, without anything new being offered each time – participants often had the same concerns but raised them under different outcomes. This would have given rise to presentational issues and impacted on the coherence of the analysis, thus limiting any value this report may have in, for example, a policy context. A thematic approach counteracts some of these issues, while at the same time allowing for the identification of subthemes and therefore a more detailed consideration of particular issues. If we continue with the example of social security – the overarching theme – it will be seen that a number of subthemes were identified, including access and assessments, awareness and award type. Where applicable, subthemes have been outlined at the beginning of each section.

While most of the themes analysed were selected because they were raised by a numerically significant number of participants, this was not the case for all themes. Only approximately four per cent of participants raised the issue of justice, for example; by contrast more than half discussed education. This disparity corresponds to the fact that far fewer participants will have had direct contact with the justice system, including the police and prison service, while everyone has to attend school in one form or another. It does not follow, however, that the issue of justice is somehow insignificant; in fact, for the small number of people who have had direct contact with the justice system it is likely their experience has had a disproportionate impact on their own and family's life.

Most participants raised the issues of awareness, both for professional and the public, and appropriate training. Where appropriate, these issues have been considered under the most relevant theme. For example, if a participant raised the issue of awareness or training in education, their contribution has been considered under the theme 'Education'. Many people, however, raised these issues in a more general or wider sense so that they cannot be so easily categorised. These responses have been analysed under the theme 'General Awareness and Training'.

Our questionnaire did not ask any quantifiable questions. As such, the analysis here is qualitative. Given the rich detail and anecdotal nature of much of the information we received, this report makes extensive use of direct quotations; only those who gave permission for their response to be published are quoted directly. This report does not make any value judgements on the information received, nor has the information been vetted in any way for factual accuracy. The opinions and comments submitted to the engagement exercise may be based on fact or may, indeed, be based on what participants perceive to be accurate, but which others may interpret differently. It is important for the analysis to represent views from all perspectives. The report may, therefore, contain analysis of responses which may be factually inaccurate or based on misunderstanding or misinformation but nevertheless reflect strongly held views. In some instances, such inaccuracies and misunderstandings will be relevant findings in themselves – what information people choose to preference can be just as revealing as the information itself, as indeed can be what they have not discussed. On occasion, where appropriate, ellipses and square bracketing have been used to aid understanding and clarity; typographical and spelling errors have also been corrected. Otherwise information is presented as it was received without any further amendments.

Throughout the report participants' views are summarised using quantifiers such as 'many', 'some' and 'a few', to ensure the narrative remains readable. These terms are used to provide the reader with an indication of the balance of views expressed by participants. To aid readers in interpreting the scope of such quantifiers, each section begins with an indication of how many participants have responded to the question. The quantifiers used in each section are relative to this number. The term 'majority' is only used in cases where a clear majority of the respondents who comment on an issue share a similar view. The term 'a few' is used for a relatively small number of respondents. The selection of other quantifiers is based on the relative balance of issues raised.

Engagement events

As part of our engagement activity we held a number of engagement events, as detailed below:

• 22 November 2017: Walpole Hall, Palmerston Place, Edinburgh, EH12 5AW
• 1 December 2017: Eday Walk, Aberdeen, AB15 6LN
• 5 December 2017: Jurys Inn Hotel, Millburn Rd, Inverness, IV2 3TR
• 13 December 2017: The Studio, 67 Hope Street, Glasgow, G2 6AW

To ensure consistency, delegates who attended these events were asked the same questions as those who used the online engagement tool. Each event had two parts: a morning session for autistic people, their families and carers, and an afternoon session for professionals. The events were split in this manner to ensure delegates had a 'safe' space in which to freely share with us their experiences, thoughts and ideas. Some crossover with the groups did occur, with autistic people or their families attending the afternoon sessions and professionals attending the morning sessions.

Discussions were facilitated by members of the Scottish Government autism policy team and staff of Autism Network Scotland. Notes were taken for each facilitated table of delegates, while an illustrator attended each event to graphically capture discussion points. Some of those illustrations have been used in this document. Like the responses received to the online questionnaire, delegates who attended the events discussed a range of issues under each of the strategy's outcomes, so that they too clearly viewed them as being intimately connected. As such, those discussions have also been presented thematically. There was considerable overlap between what delegates told us at the events and what people told us through the online questionnaire, which means some repetition is unavoidable. That said, while there was broad consensus on issues, the themes identified from our analysis of the engagement events do not correlate exactly with those identified from our online tool.

Criticism

A number of criticisms were made of how the Scottish Government handled its engagement activity, both the online engagement tool and the engagement events. In terms of the former, criticism was made of the form of wording used in the tool's five questions, in particular that they were too open-ended for some autistic people and lacked precision of language. It was suggested that a survey-type questionnaire might have been more appropriate, or that questions could have been vetted for clarity and understanding by individuals on the autism spectrum.

In terms of the engagement events, some people raised concerns about the venues and the sensory challenges they posed for some autistic individuals. Others asked about the choice of locations and whether additional events might have been held in other parts of the country. At least one individual complained about the fact that no demographic information was collected on those who attended the events, while others noted concerns about the engagement events being split into discreet sessions for different groups.