Since November, Ariana Stewart has attended school five times.
The little girl from Roybridge spends her days and nights in her bedroom.
Ariana has autism and severe learning difficulties and is a school refuser – a group of often-forgotten pupils who just can’t regularly make it into the classroom.
Her mum Sarahjayne tries everything she can think of to help Ariana and keep life as normal as possible.
But it’s tough.
Sarahjayne, 37, believes Ariana shouldn’t be forced to attend a mainstream school.
Highland Council thinks mainstream school is fine for the nine-year-old.
And now, Sarahjayne has made the decision to speak out about Ariana’s desperate situation in a bid to help her and other families going through their own schooling “nightmares”.
Here, she talks through what family life is like, her fears for Ariana’s future – and how she will do anything to fight for it.
Mum of school refuser with autism in desperate fight for help…
Ariana was diagnosed with autism when she was three. She is currently judged to be at level four in terms of support needed – the highest level.
Sarahjayne said: “I doubted myself at first because she was my first born – I just thought it was harder than I thought it would be.
“But there was something in my actual soul telling me that wasn’t the case.
“When they finally diagnosed her, it was a relief in a way that I wasn’t crazy.”
Ariana just parrots what other people say and her go-to answer to everything is “I don’t know”.
She loves her tablet and she loves drawing. She does not love having her picture taken, as you can see from this story.
Sarahjayne says Ariana has also displayed signs of pathological avoidance disorder (PDA).
Also known as demand avoidance, it is a controversial diagnosis where usually autistic people struggle to do something, even if they wanted to in the first place, if they are ordered to do it.
School refusers: What went wrong for Ariana?
Sarahjayne feels the family are caught in a spiral of trying to get Ariana to go to mainstream school.
She said “Ariana used to go to school – not always, but quite often. But since November, she has pretty much point blank refused to go.
“There’s no way of getting her to go in – we and the school have tried everything.”
At one point, Ariana had a room to herself, and Sarahjayne was going to school with her.
But even that has stopped – she has only been to school five times since November.
Sarahjayne said: “Spean Bridge Primary School has been amazing – they try so hard.”
Ariana doesn’t speak much. she often copies what other people say and what she says doesn’t always have context.
But something happened recently that made Sarahjayne scared of the potential consequences of forcing her into school.
She said: “Ariana often just says ‘I don’t know’ to everything.
“But recently, she said to me ‘if you make me go back there, I don’t want to be in this world any more’.
“So I can’t make her go back just now.
“I just want her to have a life that’s not just in her bedroom.
“She has a right to an education.”
Autism in school: What are Ariana’s options?
The “local” option for specialist schooling is in Inverness – but realistically, the family would have to move from Lochaber.
With Sarahjayne and husband Ross, 38, running their own plumbing and heating business, that’s just not feasible.
And more to the point Roybridge has been where they have lived, first as a couple and now as a family with Ariana and her seven-year-old sister Kenna, for 14 years.
It is home.
Ariana is currently in P5.
Sarahjayne said: “More than two years ago, we started thinking ahead to high school. For various reasons, we were worried about Lochaber High.
“I started looking into schools for Ariana.”
Sarahjayne found another option – a residential school called Ochil Tower School in Auchterarder in Perthshire.
It is 100 miles away from Roybridge, and crosses into another local authority area.
Drummond School in Inverness is only 60 miles away – but it is a day school, so the commute would be twice daily instead of weekly.
However, Sarahjayne needs agreement from professionals that mainstream school doesn’t work for Ariana.
What happens now for Ariana?
Highland Council recently got in touch with the family to say that mainstream school IS suitable for Ariana.
Obviously, her mum disagrees – and is now fearful for Ariana’s future.
She said: “What happens when I’m not here any more? What will she do?”
“This is Ariana’s whole future in jeopardy.”
Sarahjayne has also had a meeting with an autism practitioner from the council.
But she feels she now has no choice but to go to the Scottish Public Services Ombudsman about Ariana’s situation.
She added: “My child hasn’t been to school in weeks and it feels like no one cares – that they are happy to let her waste her life away in her bedroom.
“I honestly feel like it is bordering on neglect from them now as it isn’t a surprise, her going to school has been declining more and more as the months go on.
“I would also like to raise awareness of just how hard it is to get any kind of help when it comes to special needs children and more must be done.”
What do the council say?
A Highland Council spokesperson said they were unable to comment on Ariana’s case, but added that they were committed to working to support children with additional needs.
The spokesperson added: “We work in partnership with parents, carers, children and young people to identify and understand their needs and to provide appropriate interventions.
“The underpinning principle in all of our ASN policies is that children and young people are supported to achieve their potential.
“Our policy and guidance on supporting children with autism was written in conjunction with parents and organisations supporting families with autism.”
Read the council’s policies on autism
Read more on ASN and schools
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