Layla* watched in horror as her 10-year-old son had a panic attack at the school gates.

Mason* was in tears, shaking and hyperventilating while pupils and staff looked on helplessly.

It was then that Layla, who had spent hours persuading him to leave the house to attend school in the first place, decided enough was enough. 

“The school secretary was trying her best to tell him just to come in, but the more she said it, the more distressed he became,” she remembers.

“I couldn’t bear it any longer and I said: ‘I’m taking him home. I’m not putting him through this.’

“Mason whispered: ‘Thank you,’ and his gratitude made me feel terrible. I should have listened to him from the start and kept him at home.”

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Since that day in April 2021, Mason, who is autistic and also has ADHD and OCD, has only been attending primary school four days a week, and single parent Layla, 47, says that although life is not without its challenges, it feels more manageable.

Mason, now 11, had been finding the rigidity of school increasingly difficult, particularly since lockdown gave him the experience of being at home. And he is by no means alone.

A recent report by the Children’s Commissioner Rachel de Souza revealed that there are around 1.8 million children who are regularly absent from school in England – double the number since before the pandemic. 

“Persistent absence” as it is labelled, means missing more than 10% of school. Of these, an estimated 135,000 so-called “ghost children” have failed to return to school at all after lockdown, with authorities having no idea where some pupils now are.

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But this startling statistic doesn’t begin to tell the full story and it’s far more complex than a simple truancy problem, not least because of the mental health crisis, with waiting lists for CAMHS (child and adolescent mental health services) hitting almost three years in some parts of the country.

Campaigners say the main driver behind school avoidance is the fact that many of these children have special educational needs (SEN) and are trapped in an inflexible “one size fits all” education system. 

It is estimated that around 15% of people in the UK are neurodivergent, a variation in brain function that can include autism, ADHD and dyslexia, and parents of these children describe having to fight for them at every stage – first for a diagnosis, then for support.

Then they find themselves battling schools who are bound by fixed ways of teaching and disciplining that allow little flexibility to accommodate children who find that difficult – or even impossible – to cope with.

Former X Factor winner Sam Bailey’s son Tommy, 13, is one such child.

Since being diagnosed with autism and dyspraxia in 2020 following years of “different” behaviour, he’s struggled to go to mainstream school – but wasn’t offered support to attend one that could meet his needs.

Sam recently revealed: “He’s been off school since last July, living at home in his pyjamas with hardly any education.

“The system is so broken.”

Layla first noticed Mason’s own differences when he was around six and started talking about his “urges”, which they now recognise as intrusive thoughts, although the school dismissed her concerns and said he was “just a bit quirky”.

But when he started hand clapping – also known as stimming, a behaviour typical to autism – she fought for a diagnosis via the NHS, before eventually obtaining one privately.

During lockdown, Mason began suffering with high anxiety and chaotic emotions, and trying to homeschool him involved hours of high-stress wrangling.

Layla herself suffered a breakdown under the strain and her relationship with Mason’s father collapsed. She eventually had therapy for PTSD.

She says: “I was an empty vessel by that point and had to choose where the tiny percentage of what I had left went. Obviously I chose Mason.

“We’ve had some absolutely hellish days and I’m exhausted from it – physically and mentally. There have been lots of tears, but I know now that battling with Mason to get him into school every day was making things worse.

“After the panic attack, school accepted the four-day week and so far they haven’t punished us for not attending. But they’ve gone down as ‘unauthorised absences’ and that sort of language has really damaging connotations.”

Louise Parker Engels, co-director of Define Fine, a group providing parent-peer support for attendance difficulties, says it goes way beyond children just not fancying going to school. 

“A lot of neurodivergent children want to do well at school and they try to fit in,” she says. “But it’s traumatic for them to be in a sensory environment that overloads them, while being punished for things that they really can’t help. 

“They’re also often very vulnerable to bullying, because they maybe don’t read social cues as well and they can seem a little bit different, which makes them an easy target.

“So they’re not learning or enjoying being at school – they are enduring it. We see a lot of schools insisting the children are ‘fine’, but the reality is, they are frozen in fear and it’s not sustainable.

“And sooner or later, these children can’t do it any more.”

Louise says that lockdown showed kids who had been struggling that there was an alternative way to learn, and many can’t now return to the way things were.

“We have a lot of anecdotal evidence that ‘masking’ autistic children, who had previously been persevering with school, had this break from it and just could not go back.

“They loved their online learning, plus some children of key workers who had been in school during lockdown loved the smaller classes. 

“I think a lot of people, including the Children’s Commissioner, have assumed that these children are anxious about Covid or parents are not seeing the importance of education, but actually, it’s more about having seen a different way of doing things and being unable to go back to the way things were.”

For other children, the stress of home-learning during the pandemic exacerbated existing problems.

Kate* is mum to 16-year-old Ben*, who was diagnosed with ADHD and anxiety four years ago.

Since being permanently excluded for “low-level disruption” during his first term at a new senior school in 2019, Ben has mostly been at home, and copywriter Kate and her husband Rob*, a transport worker, have been pushed to the brink.

She says: “Ben would get told off for fidgeting and tapping and they clearly didn’t know how to handle children like him. 

“He’d end up getting taken out the class and he’d shut down because he didn’t know what else to do.” 

Ben was given a place at a Pupil Referral Unit (PRU), a part-time educational setting for children suspended from mainstream schools.

However, he never got the chance to start there in March 2020 because of lockdown and the move to home learning.

Then he received an EHCP (education, health and care plan) giving him 20 hours of support and a place at a different mainstream school, which he began attending in September 2020 and where everything was “pretty good,” according to Kate.

However, when the winter lockdown moved learning back online, Ben couldn’t engage with the Google classroom lessons and started falling behind. After schools reopened in March 2021, he began avoiding certain lessons and his anxiety was “through the roof”.

Kate explains: “It just went downhill from there. The school tried to support him, but everything they put in place was at the school itself and the problem was I couldn’t get him there.

“It was a nightmare. When you’ve tried to get a child out of bed for three hours, desperately attempting to plead with him, and you’ve got your own work to do as well, you’re not always as patient as you’d like to be. So we’d end up in some horrible arguments.”

She adds: “There’s this idea of feckless parents who don’t send their kids in because they can’t be bothered, but the vast majority of us are doing absolutely everything we can.

“So many days I’ve still been trying to get him into school at midday. Sometimes I’ve been stood outside the school for three hours trying to get him to go in. If I didn’t work for myself, I wouldn’t have a job now.

“Looking back, I’m not sure how we’ve got through it and there have been points where both me and my husband have been absolutely done.”

Kate has felt constantly let down by the school. She’s had appointments with the SEN coordinator cancelled without warning, and says Ben was even prevented from attending his prom because of “safeguarding concerns”.

By the time he came to take his GCSEs this summer, his attendance was down to around 9%. He sat some of his exams, all of them at home, and has plans to start a college course, although at what level depends on his results.

Kate says he is broken by a system he has no faith in.

“A few years ago, Ben was a happy, confident boy. And now his confidence is shot – it’s taken an absolute beating because he has no trust. He’s lost the impulsiveness he once had and it’s really upsetting to see.”

Ellie Costello, director of Square Peg, a parent-led organisation that raises awareness around the barriers to attendance, says the current situation could have “catastrophic” consequences beyond their lost learning.

“Children don’t have the brain development to understand that this is not their fault.

“They end up internalising their inability to fit in and we’re seeing a surge in low self-esteem, self-harming, eating disorders and challenging behaviours, because these kids are in distress at an unprecedented level,” she explains. “And the system’s response is to clamp down harder on attendance.”

Ellie points out that parents already under immense strain can be fined and prosecuted for unauthorised absences even if they’re desperately trying to get their children into school. 

“Criminalising parents isn’t the answer. Our children are showing us that the education system isn’t fit for purpose. 

“Our families are showing us that services aren’t working. And parents are often dismissed as either hysterical or disengaged, uncaring and irresponsible.”

Kate wants to see a complete overhaul of the education system to make it inclusive for children like Ben.

“Behaviour policies need to be altered for neurodiverse children and we have to ban exclusions for behaviour, particularly if it’s a child who has a special need. It achieves nothing,” she says.

And Layla says she thinks it’s vital all teachers have proper SEN training. “Mason was shamed in front of his peers and sent to the headmaster because he wouldn’t stop stimming,” she says.

“It’s not that he wouldn’t – he couldn’t. And this teacher didn’t even know what stimming was, even though they had taught him for five years. That’s just completely unacceptable.”

Mason is due to begin secondary school next month, which means starting from scratch with a new set of teachers, and Layla is apprehensive. But, whatever happens, she will be there advocating for him at every step.

“Mason has lots of friends – most of them are neurodivergent and they are all equally brilliant. The things that they come out with shows a completely different view of the world that is just really beautiful.

“These kids should be treasured and yet they are being brushed aside and told they don’t matter. They are being failed and it’s shameful.”

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*Names have been changed

• For more information or support, visit Definefine.org.uk and Teamsquarepeg.org

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