National autism post-diagnostic support service - pilot programme: evaluation

Summary of recommendations, way forward, and next steps

Recommendation 1 – Assess need. Strengthen and expand support network

The current network of agencies providing support are innovative, valued by those who use them, and fulfil an important role. Many are small and respond to the best of their ability with the skills and resources they have at their disposal. They 'play to their strengths', which although commendable, potentially leaves gaps. (e.g., racial/cultural minorities, remote or isolated geographical locations) They should be supported to strengthen their expertise and efficiency and working in partnership, expand their capacity and reach.

Recommendation 2 – Develop consistent integrated support, pre- and post-diagnosis

Review the approach to diagnosis at all stages of the diagnostic journey. This will include evaluating existing and novel systems of pre- and post-diagnostic support developed by these groups. In this, a sufficiently sophisticated 3 -tiered approach should be taken, reflecting the levels and complexity of need.

Recommendation 3 – Reaching out –connecting and establish a formal

Consider setting up a 'hub and spoke' system of pre- and post-diagnostic support. Led by Scottish Government but with the support of a key lead third sector agency. All participant organisations would contribute to a vision to support people of all ages, and at all stages. Connecting the statutory and third sectors.

Recommendation 4 – Simplify and streamline

Review and develop systems to simplify and streamline the diagnostic process and pathway; to reduce delay, clarify expectations, ensure consistency, effectiveness, and accessibility at all stages of the diagnostic journey. This to include a 'now that you have your autism diagnosis' pack (10 points for those receiving a diagnosis).

Recommendation 5 – Ensure quality and accountability

Ensure participant organisations are supported to meet quality standards, and effective administration and evaluation. This should be built on lived experience and Participatory Action Research (PAR). This will help to ensure relevance, improve consistency, access, and public accountability, and inform official guidance.

Recommendation 6 – Update training resources

The training of professionals to be updated to include informed and current thinking around autism, neurodiversity, and neurodivergence, and on how to work effectively with autistic people and families. Ideally, this would be co-produced and co-delivered.

Way forward: Next steps

It is hoped these recommendations inform and facilitate discussion that will explore demand and responses as part of an action plan to be developed by Scottish Government, participant organisations, and other stakeholders.

Limitations

This evaluation covers a six-month period of the pilot during the pandemic. No in-person work was possible during this time. All groups operated remotely.

The overall Margin of Error (7%) should be considered, although data received showed a consistent pattern and the narrative content contained rich first-person accounts related to lived experience.

No data were obtained re specific minorities as it was reported that all agencies collected and monitored all such data. It is recommended that this be included in future studies of this sort.

Note. Participant organisations have each received a full and detailed report on their own organisation, and a redacted copy of the consolidated report.