Autism needs its own champion

Nick Ward, Director of National Autistic Society Scotland

There are 56,000 autistic people in Scotland and together with their families and allies this is a constituency of over half a million people, and yet in the first leaders’ debate we heard little that spoke to their concerns.

The truth is that we hear day in day out how autistic people and families struggle to get the services they need, how their human rights are abused, and how many are forced to wage war to the point of exhaustion against local authorities, schools and health and care services to get the support or even the diagnosis that they need.

To try to address this gap in the debate we have partnered with other charities ENABLE Scotland and Scottish Autism to launch the ‘Our Voice Our Rights’ campaign to try and make sure the issues facing both autistic people but also people with a learning disability are part of the national debate.

We recognise that learning disability and autism are not the same, in fact they can affect people very differently – however the challenges around accessing support and services are in many cases very similar and both are victims of the ‘implementation gap’ – the gap between good policy and law and what actually happens on the ground.

The ‘Our Voice Our Rights’ campaign is very much shaped by the experiences of individuals and families, such as Suzanne and her son Callum from Dunfermline. Suzanne has fought hard to get support for Callum who is autistic and has a learning disability.

She says: “The last year has been tough. When Covid hit, a lot of the services were withdrawn and we were left to deal with health, education and social care issues.

It’s been really difficult for Callum and us as a family and we’re still not getting the same level of support.

Services definitely need more money, but also the system isn’t joined up and you end up being passed from pillar to post. I think someone or something needs to bring the system together. I also strongly believe there should be a senior figure or body, to whom families like mine can turn if we have an issue.”

Suzanne’s experience perfectly articulates the issue and that’s why we’re calling on the political parties to commit to a Commissioner set up in law which would be a powerful ally to whom people could turn to in time of need.

Such a Commissioner would be the first of its kind in the world and send a clear message that these communities are valued. Importantly they would close the gap between what is meant to happen in policy and in law and what actually happens in reality.

They would highlight where services and support are lacking and in extreme cases ask regulators to investigate. But they would also play a valuable role in spreading good practice. There are many wonderful initiatives and projects out there but sadly too few people benefit from them.

We are really proud of how far the ’Our Voice Our Rights’ campaign has come. We have established a brilliant leadership group of autistic people and people with a learning disability to direct the campaign and we’ve provided a platform for individuals and families to share their views and experiences online.

Our supporters and campaigners have sent hundreds of emails to the party leaders calling for action and we’re delighted that the recent ‘Transformation Plan’ from Scottish Government and COSLA has committed to exploring the concept of a Commissioner.

So, we’re making progress but in a national debate dominated by the constitution, we as charities and our supporters must redouble efforts to cut through, otherwise we risk seeing many years pass before things improve.

You can visit the Our Voice Our Rights website and join us in taking action by writing to the political party leaders to include the commissioner concept in their manifesto.

Visit: www.OurVoiceOurRights.org

Or follow #OurVoiceOurRights

Nick Ward, Director of National Autistic Society Scotland

Autism needs its own champion - Nick Ward

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