Rory Paterson, Media and Communications Officer for National Autistic Society Scotland, discusses the online social groups for young autistic people that they deliver as part of a post-diagnostic support service. 

In September 2019 the Scottish Government committed to work with national autism charities and autistic-led organisations to deliver a pilot programme of post-diagnostic support for autistic people in Scotland. The aim was that those diagnosed within the past two years would be supported to understand and embrace their autistic identity, and that parents/carers would get access to information, support and advice to help their child’s development. 

The post-diagnostic service offers a range of services. For the National Autistic Society Scotland, the goal was the delivery of post-diagnostic support through online social groups. Other organisations involved in the pilot offer a number of other services:

• Scottish Autism – post-diagnostic support to parents/carers of children aged up to 18 years
• Autism Initiatives – late diagnosis programme for adults
• Autism Understanding Scotland – autistic-led organisation offering a range of written advice and guidance and in-person support and training
• Scottish Autism Women’s Network – local peer and online support for autistic women and young people
• Autism Rights Group Highland – post-diagnostic support for autistic adults and parents of autistic children
• Autistic Mutual Aid Society Edinburgh – peer support via online social events for adults in the Edinburgh, Lothian’s and Fife. 

Each organisation brings their own expertise and tailored services to the project, ensuring that the correct support is available to all participants.

Online social groups

Our online social groups aim to support 12 to 18-year olds to understand and embrace their identity as an autistic person through exploring topics such as understanding autism, managing anxiety, navigating social situations and more. 

Each individual is supported for approximately 6 weeks, after which they are signposted to appropriate services. Each group meets weekly and discusses the topic of the day, as well as engaging in a short team-building activity to improve confidence and reduce social isolation

There is also a parent information session, which has helped parents understand what happens in the groups and to answer any questions they may have. Ultimately, the groups are about sharing experiences and coping strategies, and they are very much participant-led. The service is aimed at young people diagnosed within the last 2 years, though each case is considered on an individual basis.

Our service was designed from the outset to be delivered online, this comes with its own benefits and drawbacks. One key benefit was being able to reach young people throughout the whole of Scotland, including remote areas such as islands. It is unlikely the service would have able to offer support in such remote areas without the availability of online groups. 

One particular challenge was online accessibility. While many families were already skilled using online platforms when the COVID-19 lockdown happened, some were not and required support to access the service. 

We also worked with 21 schools across Scotland from the beginning, to deliver post-diagnostic support – this includes delivering it to groups of children from the same school, as well as children in different schools who all come online at the same time to join a group together during school hours. We have also been receiving referrals from child and adolescent mental health services (CAMHS) once they diagnose young people.

Outcomes

Overwhelmingly, the main benefit of the service was the reduction in social isolation. The COVID-19 pandemic caused a large increase in social isolation for people in general. We heard daily from families in Scotland struggling to support their autistic children and young people, who were often anxious and frustrated, and struggling to cope with a situation they didn’t always understand. Our social groups provided a lifeline for many autistic children and young people, enabling them to interact and have fun during a difficult time.

The service has been very successful, with participants experiencing ownership of their diagnosis, as well as an understanding the benefits and challenges of being autistic. Moreover, participants acquired new practical and emotional skills, such as managing anxiety, as well as learning about individual triggers and how to address them. 

Our own polling in December 2021 found that 92% of participants were glad they took part, and 81% said that they had learnt new things about what their diagnosis means to them. Our feedback from parents was also very positive, with many saying it had had reduced their child’s social isolation and increased their happiness. 

The Scottish Government also published an evaluation of the project in March 2022, finding that a large number had improved self-confidence and self-esteem, as well as better knowledge of where and how to get more support if needed. The evaluation also highlighted that participants really valued the peer support, that many felt understood and a part of something, often for the first time. 

Although funding was originally due to end in June 2022, the Scottish Government has extended it will March 2023. Such funding is essential for the service to function, and the extension of funding is a clear indication of the benefits of the service and the project as a whole. As a result, we will continue to deliver the service until the end of funding in March 2023, and hopefully beyond. We will also continue to adjust and amend delivery as required, building on our existing partnerships with schools and other professionals, such as CAMHS.

Further information

National Autistic Society Scotland post-diagnostic support service