Scotland needs an autism commissioner to show affected kids they matter

What is it about kids? They can line up in the playgrounds waiting for the bell and yet when it comes to their own homes, they turn into frantic dervishes, wrecking rooms and scattering junk wherever they roam.

This week I took part in a campaign to ­support the idea of a National ­Commissioner for Autism and Learning Disabilities. It will be a world first for Scotland and an idea that has the potential to unite the main political parties in the forthcoming elections.

The charities behind the campaign – ­Enable Scotland, National Autistic Society Scotland, and Scottish Autism – claim that the Covid lockdown has exposed and exacerbated the challenges facing families as they struggle to access their rights to education, work, a family life, healthcare, and high-quality social care services.

READ MORE: Teacher training in Scotland to be changed to increase autism awareness

My son is eight and he has an autism ­diagnosis. Compared with many other families, we are hugely fortunate, he is “high-functioning” has good language skills and is in a mainstream school. We also have a settled income and no great barriers but I know that this not the same for other families and the need for a ­national champion to assert their rights and to pressure national and local government is urgently needed.

Laura McConnell, who works with autistic children and has autism herself, said: “A lot of people have heard of ­autism, but they don’t necessarily ­understand in depth, or their understanding might not be accurate. That can sometimes lead to bullying, to misunderstandings or to judgment of people.” She is keen to see a Commissioner for Autism tackling ­bullying as a priority.

Peter McMahon, who has a learning disability and is a member of Enable Scotland, is keen to see a Commissioner for Learning Disability and Autism tackle discrimination. “With a commissioner working with us we can improve access to services and speak up for people when they cannot. Most importantly we can help people live good lives with choice and control and free from discrimination. People with learning disabilities feel ­invisible, we don’t want to be the invisible people anymore and feel a Commissioner would help us.”

My own home has slightly different ­priorities. Like the vast majority, Wee Jack is not really enjoying lockdown. He is ­incarcerated in a nice house but the ­apparent freedom he has from the structures of school, does not help his condition. He desperately needs social ­interaction with kids of his age, he needs to experience the rough and tumble of the playground, and like many kids with an ­autistic diagnosis thrives on ­predictability, routines and even ­repetition.

This is an historic column for me, the very last time in my life I will call him Wee Jack. He is a tall and muscular boy who can devour a whole packet of ­Morrison’s waffles in a single sitting and although he has a couple of years of primary school yet to come, our minds are already ­wandering to the next big hurdle, secondary school.

One of the real challenges of autism is anticipating change and preparing for it. Autism is a condition that is still widely misunderstood, and although no single kid is the same, they often share deep anxieties about transition. That is not only an issue for education but for the job market in Scotland where a worryingly small ­percentage of teenagers with autism can find jobs.

Last week Jack was given a major treat. He was allowed to sit in the computer room eating fish fingers and chips. The auspicious occasion was to watch a streamed football match from the top drawer of international glamour, a ­goalless draw between St Johnstone and Aberdeen at a rainy and mud strewn ­McDiarmid Park.

What began as a bit of bonding between father and son, relishing the skills of sporting excellence ended with talk of muddy puddles, Passchendaele, and trench warfare.

There will be some out there who will rush to judgment and be horrified that any child should be exposed to the ­brutality of a goalless draw in Perth. All I can do is plead to your better judgment. He was safe throughout the tedious and unrelenting 90 minutes. Please put down the phone there is no need for Esther Rantzen, we are coping just fine!

Coping is a keyword for families under lockdown, everyone irrespective of the abilities of their children and the quality of their online school provision face challenging times. It is even more demanding for those parents with children with learning disabilities, and indeed for those who are digitally excluded from learning. ­Local authorities and Scottish schools have worked exhaustively to ­deliver lap-tops, Wi-Fi dongles and Kindles to those families cut adrift from the web and when we reflect on these trying times the ­efforts of teachers will stand out along with health workers and care home staff as acts of everyday heroism.

Teachers are a front-line and many have been sent into the field with precious ­little training in autism and spectrum conditions. That must change. Nor do I think it should be ring-fenced as specialist ­knowledge, it should be perceived as a core-skill and one that many teachers already say they need more help with ­developing.

Jan Savage of Enable Scotland says that appointing a commissioner will, immediately reassure those with learning difficulties and autism that they matter to Government, while also providing a singular entity with the power to regulate public bodies in their dealings with people in that population. “But most importantly, she says, “they will drive a change. Knowing what’s not working is the easy part, doing something about it is harder.”

At a recent fringe event at the last SNP conference, which was hugely well attended for an online event, Jan urged Education Secretary John Swinney to take on board the concept of the commissioner. He was welcome to the idea, but those charities united behind the concept are keen to see it have wider buy-in from all the main political parties, and not an idea that gets caught in bipartisan politics.

My own personal passion is harvesting knowledge. Scotland is a smart country but whilst we imagine a global first with a National Commissioner for Autism and Learning Disabilities, we also need to ­acknowledge that other nations are ­experimenting with nursery care, schooling, and the job market. We may be first to this idea but not to many others.

As we rebuild out of the pandemic and look to a new era of social care, Scotland needs to be good at being a “magpie” ­nation, learning and borrowing from leading edge work from around the world. Gaining, assessing, and implementing global best practices should not be left to academic study alone, it needs to be hard-wired into local government and any new knowledge shares across communities and regionally funded social services.

Irrespective of how you intend to vote at the forthcoming election, ask your ­local candidates how they aim to support the concept of National Commissioner for Autism and Learning Disability. Push them for clarity.

If you do that, I will make a major personal commitment. Never again will I subject my son to a goalless draw against Aberdeen…!