Much more than a 'sniffle'. Martin Bureau/AFP/Getty Images

February 21, 2024   7 mins

Harry Hocking was just 14 when he texted his mother to tell her he was in desperate trouble and needed help. On the way to school, he had become frozen with anxiety and unable to breathe or walk. Such was his distress that his mother, Niamh, had to carry him back home, where she spent hours calming him down. “When I called the school,” she says, “they told me he was probably manipulating me and if I just brought him in everything would be fine. But I know my son. I knew it wouldn’t be.”

Emma Hester, another mother of a school-refuser, believes that the school advice she followed traumatised her six-year-old daughter, Grace, who has ADHD and autism. When Grace was in Year One, she wouldn’t get dressed. But Emma was told to bring her into school in her pyjamas and they would do the rest. “To my shame, I did just that,” she says. “I dragged her into the head’s office in her pyjamas where I was told ‘well done’ for getting her in. Basically, that’s what matters for the school: its attendance record. But there was my child, a gibbering wreck, and now I’m horrified at what we inflicted on her.”

These two children are not alone. One in five pupils is currently persistently absent from school — a number that has doubled since the pandemic — and the education system is panicking. While parents report distress, anxiety and stress, the Department for Education launched what has been described as an insensitive and patronising exercise in “parent shaming”, in an attempt to get these “ghost children” back in the classrooms. The “Moments matter, attendance counts” campaign features smiling children at school with strap-lines such as “This morning he had a runny nose…but look at him now!” and “This morning she was worried about school…but look at her now!”

“They are pitting parents against their children and against teachers,” says Niamh. “When you’re struggling with children who are unable to go to school for a variety of serious reasons, and then you see a poster telling you to get your kid into school and everything will be alright, it suggests it’s your fault.”

A huge number of parents are feeling similarly frustrated at the lack of support for their children, and the insensitivity of the DfE. The Facebook group “Not Fine in School”, set up to support parents of school refusers, now has 33,000 despairing members. One, Claire Gill, wrote: “My son has severe anxiety. We had a well-being person talk to him weekly, which helped him cope, and he looked forward to speaking to them as it was a release. Now, school has stopped the wellbeing person, saying what he has learnt is on his iPad and he can look at that if he gets anxious, [and that] talking is only a temporary fix and he needs to basically learn to manage it himself. He is 10.”

Part of the problem, according to many members of this group, and a majority of the parents I spoke to, is that neither the Government nor the schools are properly addressing the youth mental health crisis. The official numbers are shocking — and that’s only the cases we know about. In the past five years, the number of children claiming disability allowance for anxiety has risen by 70%. And according to a recent survey by the mental health charity stem4, an alarming 28% of secondary school pupils have missed school because of anxiety in the past year. Those suffering the most tend to be children with neurodevelopmental conditions such as ADHD or autism.

Obviously, the pandemic must bear some of the blame. The clinical psychologist Dr Naomi Fisher puts it bluntly: “Their playgrounds were locked. Their opportunities to play were taken away. Normal life stopped. It was particularly earth-shattering for children, because they found it hard to hang on to what life had been like before.” When these kids went back to school, they were under pressure to catch up educationally, rather than focus on their psychological well-being. The news was full of horror stories about falling grades, not worsening mental health. But it didn’t take long for that damage to show itself.

The result is a system that can no longer cope with the numbers of children presenting with mental health complications. While it was hard enough for children with special educational needs and disabilities (SEND) to get help before the pandemic, things are now far worse. More parents than ever are applying for assessment and treatment in the hope of accessing an education, health and care plan (EHCP). But according to the DfE, only 49.2% of applications are established within the requisite 20 weeks, down from 59.9% in 2021. Hundreds of children are waiting more than two years to be issued with the plan that details the support they need.

While requests for EHCPs have surged, funding for them has not. And this growing burden is crippling local authorities. According to the County Council’s Network, which represents 20 county councils and 17 unitary councils, they are not receiving enough financial support from central government. This year, councils’ budget deficits accrued on Send spending are expected to rise from £2.4 billion to £3.6 billion.

It all points to a system in crisis. Emma tells me it took eight years for her daughter, Grace, now 11, to be diagnosed with autism. She still isn’t receiving the help she needs and hasn’t been in school since last October. Emma has taken matters into her own hands and is taking an MA in occupational therapy in order to provide support for Grace herself.

“It’s a two-year course, but that’s still faster than waiting for Grace to get help on the NHS,” she says. “The system is broken. We’ve got a cohort of neurotypical children who can just about manage in a school system. Then you’ve got a big cohort of autistic people with learning difficulties, and they naturally fit into specialist schools.” But, she tells me, it’s the in-betweeners — the cohort of autistic youngsters who don’t have learning difficulties, but really struggle in a large, noisy, overwhelming environment — who are being failed. These children are afraid of school, hate the scratchy uniforms — many children with autism have hypersensitive skin — and can’t cope with the chaos of the playground or dinner hall. “They simply can’t manage,” says Emma. “And the school is doing nothing to reduce the things that they don’t have to stress about.”

“These children are afraid of school, hate the scratchy uniforms and can’t cope with the chaos of the playground or dinner hall.”

Emma is not alone in feeling that her child’s difficulties aren’t being taken seriously. Last year, in a paper entitled “School distress and the school attendance crisis: A story dominated by neurodivergence and unmet need”, psychology researchers at Newcastle University interviewed 947 parents of children who struggled to attend school because of what they termed “school distress”. The researchers found that 92% of these children were described as “neurodivergent” as opposed to “neurotypical”, with 83.4% being autistic — hardly the picture being painted by the DfE’s “it’s just a sniffle” campaign.

No wonder parents are desperate. “They feel their employers, their friends, social services, the local authority and their child’s teachers don’t believe them, aren’t listening and don’t want to hear,” says Dr Sinéad Mullally, one of the authors of the Newcastle paper. “The DfE campaign just feeds into that lack of societal understanding of the problem. Simply getting your child into school won’t solve the problem if the school is the problem.”

This disdain is borne out by what happened to nine-year-old Ellie Green. She has ADHD and autism, and though she loves school, she can suffer from debilitating bouts of anxiety and hypersensitivity. The experience of her mother, Nancy, is typical of so many parents I spoke to.

“Ellie is academically very capable and has always been articulate, so at school they tend not to see how much she struggles in other areas,” Nancy tells me. Ellie often attends school wearing her PE kit, because it is more comfortable than the uniform. But this makes her feel different. “The need to obey the rules and be different at the same time can make her extremely anxious,” she says. “And when she struggles, as is often the case with autistic children, she may growl or make animal noises and the way a teacher responds to this could either calm the situation or send Ellie into a meltdown… A simple understanding of this would go a long way, but sometimes it can result in a teacher punishing or belittling a child.”

All too often, teachers are at a loss as to what to do. They simply aren’t equipped with the strategies to help. According to the 2023 annual education report from the National Autistic Society (NAS), only 14% of secondary school teachers had had more than half a day of autism training. Among primary teachers the figure was 39%. More money being spent on special needs provision probably wouldn’t make a significant difference to Ellie, but a change in the way children like her are treated would. As Tim Nicholls, at the National Autistic Society, told me: “School shouldn’t be a tick-box exercise in attendance. It should be about ensuring all children get the support they need to be able to thrive from well-trained staff who understand their needs. Instead of shaming parents and children for low attendance at school, the government should prioritise urgent reform of the education system.” And while it’s a little more complicated than blowing a runny nose, it wouldn’t actually cost that much.

The Government’s response to this growing catastrophe is to identify problems earlier, and to spend an extra £440 million in 2024-25. This will take spending on SEND to £10.5 billion — an increase of 60% in five years. The Labour Party hasn’t added much, which, as it prepares for government, doesn’t provide anxious parents with much solace. But as Catriona More from the Independent Provider of Education Advice says, just throwing money at the problem isn’t going to make much difference. Local authorities aren’t motivated to ensure that children are given the help to which they’re already entitled. “Following the law seems to be widely regarded as an optional activity, with very little requirement on local authorities to be accountable for this,” she says. “The existing SEND system doesn’t need fundamental reform: it needs to be made to work as it should.”

Not everyone is so positive about the existing system. Others believe wholesale change is required, at least to find a way to understand why so many children need help. Dr Fisher believes that this means facing up to the effects and aftermath of the pandemic. “What is missing in government thinking is accepting that this generation has gone through a massive event in their lives, which undermined the sense of safety that many of them had in the world,” she says.

And right now, the Government doesn’t seem to grasp the extent of the problem. DfE sources insist that the attendance campaign was intended only to discourage absenteeism where children had coughs or mild anxiety rather than serious SEND issues  — though they didn’t define “mild” anxiety. But such is the rigidity of our education system, there seems to be little or no attempt to interrogate the reason for these high levels of absenteeism.

Such a careless attitude towards vulnerable children shames the system and consigns that cohort to a bleak future. A child’s needs must come first — not a school’s targets. And if a student is reluctant to go to school, it’s a sign of a greater problem. Perhaps we need to rethink the role of schools: increasingly, they are becoming more rigid in focus — more vocational and less creative. Throwing cash unthinkingly at this is neither going to help the anxious children nor regain the confidence of parents.

“The problem is that they aren’t listening to us, and don’t seem able to learn anything from what we’re trying to tell them,” says Ellie’s mother, Nancy. “Education should be the key to unlocking the world and a passport to freedom. By that measure, more and more of our children are becoming prisoners.”


*Some names and locations have been omitted or changed in order to protect the identities of children.

Steve Boggan is an investigative journalist and former Chief Reporter at The Independent. He is also the author of Follow the Money and Gold Fever.