People with autism face uphill battles - Nick Ward

Yesterday the Cross-Party Parliamentary Group on Autism published the ‘Accountability Gap’ a review of the 10 Scottish Strategy on Autism.

Nick Ward, Director of National Autistic Society Scotland.

We support the group and as part of our year-long inquiry heard from close to a 1000 autistic people and families as to the challenges they face. The vision of the Strategy remains sound and has been accompanied by many positive initiatives from Scottish Government and COSLA. There is no denying however, that many people are still struggling. Two thirds of respondents said they did not have enough support to meet their needs across a number of areas of life from education, health, care, housing and employment. This is an extremely concerning situation, worsened for many undoubtedly by the pandemic.

People told us that the lack of support had a huge impact on their lives or the lives of their family. Parents in particular highlighted the difficulties in securing additional support in schools for their autistic sons and daughters meaning they struggle to keep up. Others talked about the lack of community care and support to be fully independent, have an active social life as well as manage their mental and physical health.

Transition from childhood to adulthood was also an area of focus, with a number of examples of families who saw support drastically reduce as their son or daughter left children’s services and received markedly less from adult services. It is almost certainly one of the reasons that employment rate for autistic people remains persistently low (around 2 in 10 autistic people are in paid employment) and something we need to address if all in Scotland are to fulfil their potential.

The upheaval in routine and establishing of new social norms and restrictions has been challenging for autistic people

A running theme throughout is that wherever you are in the ‘system’ you have to battle furiously to get the support to which you should be entitled. We heard from people fighting to the point of exhaustion, being passed pillar to post between the different services and departments with a growing feeling of helplessness. Even the most determined individuals or the most effective of family advocates struggle. There is little recourse and often nowhere to turn to get help in making your case and so sadly many people end up in crisis.

It’s why one of the key recommendations from the report is establishing a Commissioner in law which would safe guard autistic people’s rights and act as a powerful champion in improving service delivery. An influential body to whom autistic people and families could turn before those crisis points are reached.

But you cannot create such an office without funding services appropriately and that is why another key recommendation is for a new fully funded autism strategy in 2021 to build on the legacy of the first. This is all the more important within the context of the pandemic which has affected autistic people and families profoundly. The upheaval in routine and establishing of new social norms and restrictions has been challenging and in many cases compounded by a limiting or withdrawal of social care and support as NHS and council resources are focused on responding to Covid-19.

But it is not just the responsibility of central and local Government to more things forward.

Around half of respondents felt that autism awareness among the general public had improved, something which is positive but that still means we have a long way to go. Two thirds told us they felt socially isolated with a lack of understanding from others being a major factor. The Scottish Government last week launched their very welcome ‘Different Minds’ awareness raising campaign which among other things included a short animation which has aired on TV.

The campaign encourages us to remember that we all think and act in different ways, something now more important than ever during this incredibly stressful time.

If we all have the mindset we can build a society where everyone is truly included.

You can read the full report at www.autism.org.uk.

Nick Ward, Director of the National Autistic Society of Scotland