Autistic people need Own champion
Calls for commissioner so those who aren’t neurotypical can thrive
16.02.2023
A report by two leading Scottish charities has found that 96 per cent of those surveyed support the appointment of a commissioner to fight the corner of autistic people.
The National Autistic Society Scotland and Scottish Autism surveyed 1,215 autistic people, family carers and professionals working with autistic people.
The report urges the Scottish Government to move forward on its commitment to establish a commissioner, as the charities reveal that the human rights of individuals and families are being breached daily as a result of “a lack of accountability within the system.”
Among those who are calling for the urgent appointment of a commissioner to promote and protect the rights of autistic people is mum, Nicola Cameron.
She and husband Alistair believe children like their 10-year-old son, Alex, are being “failed by the services that are meant to help them.”
Alex was in P1 when his teachers began to raise concerns about his ability to concentrate in class.
“He was our first child, and that was quite a shock to us,” explained Nicola, of Borders town Melrose, who says teachers also picked up on Alex’s reaction to noise and other distractions.
“They told us he was getting upset in assembly, and wasn’t developing as he was expected to in reading, writing and maths.”
As well as the school arranging for a pupil support teacher, Alex was referred for speech therapy and joined the waiting list for assessment by Child and Adolescent Mental Health Services (CAMHS).
Like many parents, Nicola and Alistair hadn’t been fully aware of how their child was progressing until he was in P3 and the pandemic struck – bringing with it the challenges of home schooling.
Anxious that Alex was not learning in the way they would have expected, his concerned parents sought private medical advice.
Only then was he diagnosed with autism, with an associated language disorder.
“It was quite a shock. But now that we had a diagnosis, we were confident that would make a difference,” said Nicola, 45, who describes the support the family received from Alex’s school, Melrose Primary, as “amazing.”.
“The pupil support teacher was delighted we could then go ahead and request more support. But Alex is now in P6 – and nothing has really changed.”
For the last two summers, Alex has benefitted from private language therapy.
Although they’re indebted to teachers at Melrose Primary for doing all they can, his mum and dad feel that throughout, their family has lacked input from a qualified professional who is equipped with the expertise and experience to understand their son’s needs.
“It has been very frustrating.
“We have funded it ourselves, which we are fortunate to have been able to do. I dread to think what other families go through if they are not in that position.
“You feel you are going down a blind alley, and wasting time,” continued Nicola.
“We feel like we could have got to the point in P2 or P3 and had a plan in place for him.
“We know nothing about this process. We are not getting independent advice from someone who is qualified.”
Loving parents Nicola and Alistair now reflect and wonder if they ought to have done things differently.
They encouraged Alex to get involved in rugby, football and tennis. Looking back, says Nicola, maybe they shouldn’t have done that.
They couldn’t be more proud of their “lovely” boy’s creativity, his imagination, and his artistic talents, his love of school and his commendable IQ.
But now they understand why he loathes sport, particularly the team variety, because he
struggles to understand rules and opponents’ tactics.
The arrival of little brother Fraser, who is now aged five, greatly helped Alex to overcome his social struggles.
Without him, says Nicola, Alex would be an insular and isolated child.
“We are concerned about when he goes to high school in a year and a half, and how he is going to cope,” she said.
“Diagnosis is important for us. We want him to do the best he can at school and leave, able to live an independent life.”
That is why the Camerons are pressing for an end to delays and an urgent appointment of an advocate – a commissioner who can give autistic people in Scotland and their families a voice, pressing for resources, promoting and protecting their rights.
“Our experience has been prolonged, frustrating, and confusing,” continued Nicola.
“After six years, we are finally getting some clarity on Alex’s support needs.
“But it is upsetting to have lost critical years that could have been used to make his school experience easier.
“We have been left to navigate the system on our own, learning as we go and funding everything ourselves. And still we have not heard from CAMHS.
“It is clear resources are stretched and children like Alex are being failed by the services that are meant to help them. Support for young autistic people involves different professions and, because each autistic person is individual, the journey cannot ever be linear.
“But it can be easier. We feel that a commissioner for autistic people could help to create a more joined-up system that prioritises individuals’ needs, and fights for recognition of the autistic community.”
Stories like that of the Camerons frustrate prolific campaigner Laura McConnell. Despite the rising profile of autism, autistic people, she says, still struggle to access the same experiences, services, and rights as everyone else.
“The biggest challenge we face as autistic people is a culture of low expectations,” said teacher Laura.
“There is an expectation that we are less capable and less worthy of the support we deserve to help us flourish in education, where we are often babysat by iPads or in bases.
“So, it is no surprise that autistic people are underemployed.
“This culture of low expectations 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.”
And she insisted: “A commissioner for autistic people must hold policy-makers and services to account, because when we are supported well, there is no reason that autism should be a barrier to anyone achieving all they are capable of.”