National Autistic Society Scotland’s crucial responses to COVID-19

The organisation has responded across a raft of measures to continue to support people with autism during the pandemic.

The National Autistic Society Scotland’s aims are to transform lives and to transform society. As a result, the organisation’s work is wide ranging across services and policy outputs. The Society runs a school and supported living across the country and runs local volunteer led branches to support people with autism and their families in their communities. In addition, the organisation provides information and advice and runs social groups. In terms of policy and transforming society, the focus is on creating a world that autistic people feel is for them, rather than feeling like outsiders. The work here comprises campaigning and lobbying to influence decision makers and public bodies to change things for the better.

COVID-19 is having a particular impact on people with autism affecting liberties, anxiety levels and mental health overall. For many who already feel isolated, that feeling of isolation has become more entrenched as usual supports have been withdrawn. Routine is invariably key to a person with autism being able to manage their life and for many people that routine has disintegrated. Nick Ward, Director of the National Autistic Society Scotland, said: “People have taken years to build a routine that works for their lives and that’s been taken away and that is hugely damaging. If you are autistic what that means is the way you operate and interface with the world around you has fundamentally changed.”

Family members are also being affected by the changes brought about by COVID-19 with many more seeing an increased caring role that sees them helping the person with autism navigate our new reality. Much of the usual mechanisms for support are no longer possible putting increased pressure on the autistic person and their loved ones.

In order to respond to the needs arising from the impacts of COVID-19 the organisation has put a raft of measures in place. The organisation, says Nick, has fundamentally changed the way it works and has fundamentally changed its offer in response to the pandemic. An initial action was to provide accessible information and advice on COVID-19 for autistic people and their families, filtering through the volume to provide the most essential elements and updates relevant.

A second response came to the fore in policy and campaigning work to ensure the rights of autistic people and their families are upheld. A specific example of this was campaigning around Do Not Resuscitate (DNR) notices where there was real concern that these may be issued to people with autism and learning disabilities. By making a powerful representation for autistic people to government, the National Autistic Society Scotland achieved explicit guidance sent out from the government to every health board across the country advising that people with autism should not be served such notices.

Further policy work that produced a rapid outcome was around the rights of autistic people to have access to activities outside of the home. The organisation again secured explicit guidance aimed at police and other bodies outlining that autistic people and their families could leave the home more than once a day and travel further to access specific locations. This has allowed people to build more of a structure to their day and enjoy time out that helps them to cope with life during COVID-19.

In terms of practical supports, these were rapidly moved online which has seen an expansion in the amount of services offered. Before COVID-19 nine social groups were in operation, now thirty are being attended remotely. Employment and training services have also been moved online. In terms of outcomes of groups being run virtually, Nick says there are positives in terms of people being able to control their environment which is actually seeing a lot of people come out of their shells and participate on a deeper level.

These changes are going to be incorporated into future plans by the organisation. Nick said: “We’re going to be keeping a blended approach in all or our programmes going forwards because people like them. This allows us to support more people and it seems to work particularly well.” The outcomes show that an innovative approach to services even under the most trying of circumstances can produce valuable learning and inform practice going forward.

On the ability to respond rapidly, Nick states that in many ways COVID-19 has reduced barriers to change through absolute necessity. With regards to being part of the third sector, in terms of being able to adapt to our new reality he said: “I think the third sector in Scotland is a brilliant sector, I think it is inspiring. I think it is full of incredibly talented individuals and organisations and the leadership has been great… It could be a sector that’s driven by competition and instead it’s driven by cooperation and I think that’s really powerful.”

Going forward into the future beyond COVID-19, the National Autistic Society Scotland wants to see more accountability enacted in terms of ensuring the rights of autistic people and their families are acknowledged and put into practice. One development the organisation wishes to see is the creation of a role for an Autism Commissioner to oversee this country-wide.

The National Autistic Society Scotland is an organisation that makes practical and profound differences to the lives of people with autism and encourages societal change. Their policy interventions have had powerful impacts on people’s lives during COVID-19 and practical implementations mean more autistic people are being supported than ever before. As we are seeing in our Community in Action series, the third sector once again is displaying its value.