AN Autism Commissioner is “desperately needed” in Scotland to stop neurodivergent people being marginalised across “every organ of the state”, charities and those with lived experience have told the Sunday National.
A report produced by the National Autistic Society Scotland and Scottish Autism last week showed how 96% of 1215 people surveyed supported creating an independent commissioner who could hold local and central government to account, promote good practice and ensure autistic people have a “powerful ally” embedded in law they can turn to.
The Scottish Government committed to the introduction of an Autism, Learning Disability and Neurodiversity Bill in 2021 which includes the appointment of a commissioner to uphold and protect the rights of autistic people.
But the bill is yet to be launched with the consultation not set to begin until the second half of this year – something charities have described as “disappointing”.
Meanwhile, the report has proven autistic people, family carers and professionals from across Scotland feel there is a dire need for change in almost every aspect of society from mental health support to education, social care and employment.
Charlene Tait, deputy chief executive of Scottish Autism, insisted there was a need for systematic change to bring an end to the heartache autistic people face in everyday life.
She said: “There is a sense of frustration that on paper, autistic life in Scotland looks not too bad but in reality, it’s often fraught with significant levels of stress because there is a lack of accountability in the system.
“In every area of civic life, autistic people are marginalised and misunderstood. It’s a systemic problem and when we have that, tinkering with the system that’s already broken is never going to deliver change. The issue is prevalent across all organs of the state and there needs to be systemic change.”
Rob Holland, director of the National Autistic Society Scotland, added: “We’ve long campaigned for a commissioner and we welcomed the Scottish Government commitment to that, but we’ve only really inched forward.
“The report shows this is something autistic people and families support and we hope that will move things along and help give it the priority it needs.”
As things stand, many autistic children struggle to attend school because of various challenges they face such as the sensory environment and bonding with other pupils.
The report states how some children can end up excluded from school due to a lack of attendance or after being deemed disruptive.
Elsewhere, adults and children often find themselves fighting the system for years to get a diagnosis of autism and are sometimes misdiagnosed with a mental health problem.
Families have also complained of facing mammoth waits for their children to be seen by Camhs – the NHS service that works with children experiencing problems with their mental health.
SNP activist Kelly Given was misdiagnosed five times over 13 years before being told she was autistic two years ago.
“I discovered from medical records that when I was 14, I was referred for an autism diagnosis and they rejected my referral without even seeing me because they weren’t convinced it was a presentation of autism and I got referred for mental health difficulties instead.
“If they had just taken the time to see me then, the last 10 years would’ve been avoidable.”
Historian Judith Langlands-Scott insisted her two autistic children were failed by the education system while her youngest son has been waiting years for a diagnosis.
“My eldest son was encouraged to leave school and with my daughter, the school guidance teacher phoned me up and told me not to send her in for an exam because she wasn’t going to pass,” she said.
“The whole system seemed to be stacked against them. My youngest son is now nine, and he’s been going through the diagnosis process since he was one. He’s still not got one.”
These are just some of the situations neurodivergent people feel an Autism Commissioner is needed to help resolve.
The top proposed duties of the commissioner from the report in order were: hold local authorities, service providers and the Scottish Government to account; promote an understanding of autism to the wider public; support individuals and families to address issues and make complaints, and gather data on meeting autistic people’s needs.
Holland said: “We see a body set up in law with the appropriate legal powers as a real catalyst for change.
“We want the Scottish Government to prioritise this.”
Tait added: “Some of these children are out of school for years so I think there’s something about compelling people to act and bringing in timescales and structures that actually work for people [when they are facing a problem].”
Journalist Stuart Cosgrove said he felt the commissioner needed to promote understanding of how autistic people struggle with transitions and do something about the postcode lottery of support.
He added: “There are some people in the Highlands and Borders that have to go 100 miles to the nearest diagnostic centre and that must make the whole process much harder.
“One of the things I also worry about too is those life stages that people with an autism diagnosis struggle with the most – nursery school to primary school for example, and the workplace is probably the biggest of all.
“I think the autism commissioner should map out what those transitions are and where there are barriers to good practice.”
Langlands-Scott and Given insisted the Commissioner should be autistic themselves.
Given said: “You can study autism until you’re blue in the face but if you haven’t lived it, then you don’t understand it in the same way. This is the issue we have – most of the studies and most support is designed by [non-autistic] people.”
Langlands-Scott added: “They would have to be autistic. Otherwise, it’s very difficult to have any concept of what it’s like to be autistic.”
People contributing to the report agreed the Commissioner should report to the Scottish Parliament annually on its work, publish an annual Strategic Plan co-produced with autistic people, and be subject to a series of interviews prior to assuming their role by a panel of autistic people, people with learning disabilities and their families.
Holland said the most important thing for him though is that the Commissioner isn’t just a token position, but someone with “real teeth” who can fight the fight autistic people so often lose.
He said: “We need someone who can be a real champion and a powerful ally because if you’re not getting the support you need, you end up fighting the system and it’s a fight individuals and families often lose.
“We want to see a commissioner that has real teeth and something that’s not tokenistic.”
The Scottish Government said scoping work on the bill was carried out between May and July last year, which involved 30 events with 18 different organisations to consider how people with lived experience viewed the legislation.
A Scottish Government spokesperson said: “This financial year we have allocated £46million to improve the delivery of mental health and psychological services including Camhs, psychological therapies, eating disorders and neurodevelopmental services.
“There will be a consultation later this year on the Learning Disability, Autism and Neurodiversity Bill – including the creation of a Commissioner.”
