Time has come for Scotland's pioneering autism commissioner

At the heart of a paper published this week by advocates of Scotland’s autistic community is a ground-breaking proposal for a National Commissioner for Autism, the first in the world. The position paper, published jointly by the National Autistic Society Scotland and Scottish Autism makes a powerful case for greater investment and strategic thinking about autism.

Backed by compelling data, the report seeks to introduce legislation aims to be “a catalyst for change” and at the heart of the debate is an increasingly familiar deficit between ambition and provision.

According to Rob Holland, director of the National Autistic Society of Scotland: “Too often we hear from autistic people and families that do not have the support they need to live fulfilled lives on their terms. Despite many good laws, strategies and policies in Scotland, there remains a gap between the support people should receive and what they actually receive, whether in school, social care, healthcare or employment.”

The idea has already attracted cross-party support and although the passage of its progress has been held up in Parliament, there remains a very high likelihood that the idea will pass into law. Charlene Tait (pictured), deputy chief executive of Scottish Autism describes the current priority as “closing an accountability gap that is becoming a chasm”.

That is precisely where the Commissioner figure would come in. Autism is a lifelong neurodevelopmental condition which leads to difficulties in communication and social interaction, and so is likely to impact on a whole range of social services from the cradle to the grave.

Addressing short falls, failures and a simple lack of awareness across our society would come under the Commissioner’s remit, especially in those areas of transition from nursery to school, from primary to secondary, from class-room to exams, from school to university and on to a job market that is neither prepared nor sufficiently understanding of autism.

It will also touch highly sensitive areas of public services where people with autism are seriously misunderstood, including the prison service, which has to cope with the challenges of incarceration and mental health.

Let me confess to a vested interest. My son Jack has an autism diagnosis but that simple statement hides a whole range of qualifying factors. He is in mainstream schooling, has a “never shuts up” approach to language and is otherwise healthy in a family that is relatively well resourced.

We often struggle with small, everyday tasks and with mild behavioural problems, but that is nothing by comparison with those people across Scotland with more severe challenges, including full-blown emotional meltdown and those that have to cope with the horrendous prospect of their children being excluded from school.

I say all of this to make a fundamental point. There are young people with autism in Scotland with no language, incapable of being in mainstream schooling and isolated within families that are struggling.

We not only owe them support, we need to change Scotland for their lives.

Autism campaigner Laura McConnell spelt out the challenges in Scotland now where we often settle for what we are given.

“This culture of low expectations,” she claims, “also extends to our public services. When services are designed around the needs of neurotypical people, we are seen as too ‘difficult’ or ‘complex’ to include. Autistic people do not want to be included through kindness or charity because we are not outsiders, we are citizens of Scotland.”

Scotland is a big country and likes to portray its big heart. That said, autism is spread geographically across many regions, communities and cultures.

It is no great secret that social provision and the caring services can be patchy across all council areas, especially in the current economic context. There are huge challenges within our educational system. We know that autistic learners too often find themselves excluded from education because their needs are not met. Many autistic children and young people are not attending school at all, and many more are only attending on a part-time basis.

One of the hidden factors of the current wave of teachers’ strikes is not simply wages but the new burden of expectation that neurodiversity has been placed on their work within schools.

Many teachers feel overwhelmed, others talk of not being fully trained on how to deal with conditions like autism in the classroom. Despite widespread political support for the idea of the world’s first Autism Commissioner, there will be challenges on the way.

The economic climate is far from helpful and a new role launching with a restricted budget is far from ideal. Corralling Scotland’s local authorities is like herding cats, even in well-established areas of social care, and there is understandable concern from the north and the Borders, areas desperately in need of much better diagnostic support. Those regions are already sceptical of Central Belt bias and would want the role to be a game-changer across Scotland.

Since my son’s diagnosis, I have read extensively about autism but remain astonished by the wide range of challenges that it can throw up – children with language or without, those that cannot abide crowds and those that stride through social situations with contrived confidence, those that are silent witnesses and those that endlessly chatter, those that have learnt how to keep eye contact and those that never will, those that rigidly insist on the same clothes every day and those that display the most wonderous and challenging sense of style, those that cannot attend school and those that suffer its routines, those that will go to work fighting-off anxieties every day and those that will never work.

One of my sherpas along the way is Steve Silberman’s Neuro Tribes: The Legacy Of Autism, the multi-award-winning book that shows the evolution and development of autism, and how different societies have tried to understand the condition.

One of Silberman’s contentions is that we are facing a major societal landmark, every bit as important as the civil rights movement and gender equality, and that neurodiversity will come to frame debates, disputes and legislation in the decades to come. It will become the major issue of all our tomorrows.

In this context the Autism Commissioner will become a leader but also an informed ombudsman, capable of resolving disputes where a child and their rights come into conflict with institutions and established practices. They will also carry a weighty responsibility to ensure that all of Scotland’s public bodies are geared to supporting autistic children not only at school but as they develop through life.

It is a role that is unique and inspiring but will also become one of the most demanding jobs that the Scottish Government will ever advertise. It is a role that is not only pioneering but one whose time has come.

Lets make it happen.