Moray mum of autistic child shares her heartbreaking story of Moray Council ASN provision, including education and social work
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PARENTS of children with additional support needs have spoken to the Northern Scot to highlight the depth of problems within Moray Council and NHS Grampian.
In this series, we are looking at the concerns they have highlighted and how their lives have been fundamentally changed as a result.
All of the parents are members of the Moray ASN Parent/Carer Action Group, and said their children's quality of life, development and access to education have been hit hard by shortcomings throughout Moray’s health and social care system.
During the summer holidays, the group led a successful campaign to secure activities for children with ASN and are now looking to radically improve the prospects and treatment of their children and those facing the same barriers.
In common among the parents, they said, is the belief that living in Moray has been detrimental to their families’ lives as a result of “massive” problems with available support.
One Moray mother, who asked to remain anonymous, said the experiences of her 12-year-old son, who is autistic, showed that ASN children face a “postcode lottery” and are penalised for living in Moray.
The mum-of-two said things reached a crisis point after her son’s diagnosis, and problems throughout social work and education left her with “no faith” in her or her son’s future.
Responding, a Moray Council spokesperson said a “period of reflection and review” was ongoing, due to an ASN review launched in June 2023.
Parents are to be consulted on the review, the spokesperson added.
Her story
"I just think: 'That is nine years he's had to hide that from his own family.'
The mother that we spoke to said her son’s autism diagnosis came as a shock.
Having shown none of the common signs, he “completely changed overnight” during lockdown, aged nine.
For years, her son had restricted his behaviour and adopted an uncomfortable mask to avoid the stigma of acting “disabled” - and for fear of being judged and dismissed.
The Covid pandemic isolated him from the wider world’s judgement which meant he could relax his “masking”, she added.
"We didn't even know the level that he was masking.
"We didn't even have an inclination, at all, and then lockdown came and he just completely changed overnight.
"I just think: 'That is nine years he's had to hide that from his own family.'
"And it is because that is how they're made to feel.”
"Nobody would listen. That really, really worries me.
Despite her son being better understood after his diagnosis, a lack of social work support in the wake of the news caused his life to spiral into a crisis, she said.
"Our son was nine and tried to take his own life before we were able to access any support.
"Nobody would listen. That really, really worries me.
"Because how many other people are going through that journey?
"The Rowan Centre were supportive during that time.
“But not having the correct support from social work to manage the situation or look after us as a family, while he was coping with the diagnosis, had a huge, huge impact.
"And it's a huge journey to have to go through, even without fighting the system.
"Even without every service that you meet, ultimately, letting you down."
Since the earlier crisis, there has been little improvement to the support provided, she said, and accessing essential services has been a “constant fight”.
"For my son, personally, there has been very little support.
"And the little that is there has been very difficult to access.
"It just shows the need there is for early diagnosis and for parents to not have to fight the
system every step of the way.
"It's a constant fight.”
The mother said her son’s return to school after lockdown was difficult.
By the end of 2022, he could no longer attend and was unable to leave the house for periods of up to three months.
"they are viewed as the problem and they are getting thrown out."
She also had to leave her job at the beginning of 2022, because “education could not cope” and could not provide any alternative for her son.
The good aims of mainstream inclusion, the mum said, have not been met by the quality of education, funding and training.
"They try and stick them into a mainstream school because they can't tick the boxes," she said.
"Then they are viewed as the problem and they are getting thrown out.
"You can't transition them from one environment to another and not give them that support.
"And the frustrating thing is, if you give them the correct support, it could be really successful."
Her son’s needs have not been met by mainstream education in the past, she argued.
He has been “punished” for having meltdowns and previous schools have failed to protect him.
"I would expect my child to be safe at school.
“And he wasn't being kept safe.
"They just didn't know where my child was.
"I can put his little sister to school and I know she's safe. I know I can trust them to take care of her.
"Whereas, with my son, it's the complete opposite.
"If anybody is going to be involved with your child, you have to know that you're going to be able to trust them.”
She added that she has been expected to provide transport, with her life put on hold in case she has to return to the school at short notice to collect her son.
Since P7, her son has attended two primary schools and has recently started a second secondary school, which she believes is: “finally getting it right.”
She hopes the school has: “taken on board what they've been told and have the correct support in place.
"Understanding his needs, understanding his behaviours and not punishing him for it.”
However, issues in accessing education, and the absence of support for children with ASN, has had a major knock-on impact on her, her son and her family.
"Who you are is taken away, your identity is taken away."
She "would never have worked" if she could have afforded not to, the mum said, but meagre
support means she still "can't afford not to work" - despite having no other options.
"I have no choice," she said.
"Because you have to be there, so your choice is completely taken away.
"Who you are is taken away, your identity is taken away."
And being subject to such a difficult situation, the mum said, means that her son has regularly asked for a break from the day-to-day through respite care.
However, she said, the family has been told this is not an option in Moray.
"There is very, very little respite available in the area,” she said.
"Even when families are in a crisis, there is no support.
"Nobody is there to come and help: to give you that break or to give your child that break.
"And so he no longer asks for that, since this year, and he accepts it will never be an option for him.
"He has just been told: 'Sorry, there is nowhere.'
"He is 12, and that has been happening since he was nine.
"That is so hard for children.”
“I had no faith in the system, I had no faith in my son’s future.
“And had no faith even in myself having a future."
During the difficult period since her son’s diagnosis, the mum said, she had “no faith” in either his or her own future.
However, joining the Moray ASN Parent/Carer Action Group gave her back a sense of agency and restored her hope for the first time in years.
“There is hope,” she said.
“Because the group gives us that hope.
“But before I came across the group, I didn’t have hope any more.
“I had no faith in the system, I had no faith in my son’s future.
“And had no faith even in myself having a future.
“I was like: ‘This is my life. That’s what it is until we die.’
“Which sounds pretty morbid, looking back.”
Changing the system, she said, could take a long time, and her two children may be long out of school by then.
"But that change will prevent other families, and other children, having to go through the trauma we've gone through.
"A lot of people have fed back to us that the entire system is really intimidating.
"You don't know where to start.
“You're scared, you don't know who to approach and you don't know who to trust.
"A lot of parents feel that they are fighting a losing battle, that nothing has ever changed, and things have been like that for years.
"They can't see the progress of the change that's been made.
"But it shows that things can change.”
Moray Council: "period of reflection and review"
A Moray Council spokesperson said: “The head of education (chief education officer) has assumed responsibility for ASN and the current ASN review from June 2023.
“I’m sure you can appreciate that there will be a period of reflection and review of the current position and planning next steps.
“Engaging with parents will be part of key work moving forwards and in this regard we will be in touch in due course where we will value their input.”
An NHS Grampian spokesperson said: "We do not accept the suggestion we have ‘written off’ children in Moray with additional support needs.
“Our teams work extremely hard to deliver the very best care they can.”
To learn more about the Moray ASN Parent/Carer Action Group, email: morayasngroup@hotmail.com
