‘Families can fall apart over this stuff’: the children refusing to go to school

Every morning Sylvie* wakes up and wonders if her nine-year-old son Jack* will make it to school that day.

"We count down to the holidays," says Sylvie. "We count down to the end of each school day with the promise of a surf." The Victorian mother of two jokes that she's not sure if that counts as bribery or "perspective", but she does know that ever since Jack started resisting going to school, the "jury is out on everything".

"When I tell people - even friends - that he has school refusal they will say things like 'so you just let him stay home?'," she says. "But this is nothing like a kid just wanting a day off." Right now the general consensus is that Jack is suffering from extreme separation anxiety, and it's agonising to witness.

"In the early days, we were in the emergency department multiple times as we tried to understand what was going on. At first there were the medical tests, as Jack would say his tummy was sore or he had a really bad headache. But then it would manifest in aggression because we were trying to push him into the things he desperately didn't want to do ... he was a kid in crisis and we had no idea what was going on."

Sylvie finds it difficult to talk about. "It's hard to match it up with our sweet boy ... this was a kid who'd never had a tantrum in his life and was a happy and cuddly guy and he just changed." He became aggressive and at times, says Sylvie, kept the house up all night - yelling and banging things, occasionally throwing things, refusing to go to bed or sleep. "Nothing could calm him."

Sylvie herself feels completely exhausted after fighting to find help - not just for Jack, but the whole family. The "teachers at school are good people and they love [Jack] ... but they have no resources or specialist knowledge, no allied health, no psych or counselling services available. They say there's at least one [school refuser] in each class, but no support for families - it was only through a really exceptional GP that we got through the maze."

"Our initial approach, which all the leaders at school espoused, of 'the only cure for school refusal is school' is rubbish for a kid like Jack. And we did some real damage to trust in going all out to 'force' him to go in those early times," says Sylvie.

Like many parents or carers in a similar situation, Sylvie has now had to give up work. The disruption to the household has resulted in anxiety for Sylvie, her partner and Jack's sister.

They're just one of a growing number of families who are dealing with the acute stress of trying to steer through the issues that are raised when their kids start feeling distressed either at school or by the mere thought of it. Crucially, these students' inability to attend potentially reflects what needs to change in our education system, for the benefit of not just Jack, but all children.

Tiffany Westphal and Louise Rogers are two of the administrators of the Facebook group School Can't, which began as a small peer support group known as School Refusal Australia back in 2012. "We've recently changed the name," says Rogers. "The term 'school refusal' implies that there's a wilfulness there, and that kids are just being obstinate. But it goes a lot deeper than that. Children are experiencing distress and they don't know what to do with it."

Rogers has two children, aged 11 and 13. A qualified teacher, she gave up her registration as she's been unable to work while homeschooling her youngest.

"The level of suffering and the level of distress that people are experiencing by the time they find our group is often quite severe," says Westphal, a social worker and mother to a 21, 18 and 14-year-old.

All the members of the School Can't Facebook group are parents or carers who have children with school attendance difficulties. Many members have qualifications themselves - psychologists, paediatricians, GPs, teachers and even school principals - but they don't offer professional advice. Instead, they come together only to realise their story is far from unique.

In June 2019 School Can't had roughly 900 members. Now it has 6,595 members, with almost 300 pending membership requests. Members say they often feel like they have nowhere else to turn. Trying to access qualified mental health support for their children and their family is hard enough with current waiting lists, let alone finding a network of people who actually understand what they're going through and, crucially, don't judge.

The rising numbers reflect a general trend of school attendance problems across the country. Datasets around school attendance issues are typically hard to get a handle on, and lockdowns and missed school due to sickness or Covid over the last few years have muddied the numbers. There's also a difference between disengaged and completely detached students.

In November 2019 the report Those Who Disappear: The Australian education problem nobody wants to talk about wrote that the term "disengaged" is used to identify students struggling at school for a range of issues, from bullying to disability to behavioural problems. "These students need to have their educational challenges addressed before school disengagement turns into school detachment," the report said.

Detached children are no longer enrolled in any kind of school at all - the report conservatively estimated that "at least 50,000 children and young people of school age have detached from any educational program or institution". That was pre-pandemic. Megan O'Connell, a co-author of the report and honorary senior fellow at the Melbourne Graduate School of Education, says current data "points to nearly 100,000 children not in education and many more only tangentially attached and not attending regularly".

It's a sliding scale from disengagement to complete detachment, but the causes and the urgent need for early intervention are the same.

For parents and carers, the experience can be isolating, says Rogers. "There is also a level of shame because oftentimes people think this is a problem with parenting, they make judgments. Often parents themselves feel like they've failed."

"Families can fall apart over this stuff," says Westphal. "Relationships can disintegrate when you have a couple disagreeing over the approach to use or a grandparent who disagrees about how to address the problem."

Malcolm's* son Patrick* is 16 years old, and has spent very little time in high school. He first started wanting to stay home from school in grade 1, and switched to a smaller school in regional Victoria at which he initially "flourished", until "grade 5 when he had a falling out with his teacher". Towards the end of grade 6 Patrick received a diagnosis of autism spectrum disorder (ASD). Autistic students and students with ADHD are twice as likely to experience school refusal.

Patrick's parents enrolled him in the online learning offering Virtual School Victoria, but it didn't work out. He enrolled in the private Victorian school Berengarra that specifically caters for students with social and emotional challenges. "That started brilliantly," says Malcolm, "but the 45-minute commute was too much for him and attendance tanked quickly." Homeschooling proved too stressful for everyone, not least Patrick.

"Respective psychologists advised us to back off schooling to reduce the amount of frustration and resulting outbursts of anger from my son. He calmed down significantly when schooling was effectively eliminated.

"My daughter, who is about to finish VCE, found the whole experience very stressful, so the experience has impacted the whole family."

The act of opting out of school, says Dale Murray, the co-chair of the Australian Association for Flexible and Inclusive Education, reflects on the nature of mainstream schooling. "Their very action of not being there is their way of telling us something - that what you're offering us and the way you treat us doesn't work for us."

Murray and his co-chair, Prof Kitty te Riele, have watched on as the pandemic has kicked off a conversation about our mainstream education system not serving the needs of children, an issue they've been pushing for years in a bid to rethink what schools need to do fundamentally differently. One of the many things that lockdowns highlighted was that "wellbeing is essential for learning" and reminded everyone of "the key role of positive relationships", says te Riele.

"It's essential that schools operate in ways that fit kids rather than expecting kids to fit in with them," says te Riele. Specialist schools can provide a possible solution, but cost and location are prohibitive for most families.

Kristie de Brenni is the principal of Queensland Pathways State College (QPSC), a senior transition program for 15 to 17-year-olds. QPSC is also, unlike most specialist schools, state-run and funded. The school, made up of six campuses, was created in 2018 when a group of state school secondary principals came together after "identifying quite a unique cohort within their seniors - students who wanted to learn, but were leaving the system because it wasn't the right place for them to be themselves and feel comfortable to learn", says de Brenni.

QPSC's environment, curriculum and approach has been built to cater for young people who have specifically refused school, most commonly for mental health reasons. Some 70% of the students have a diagnosed anxiety or depression illness.

The school is notable for its tiny cohort - approximately 30 students a day attend each campus - and for its emphasis on wellbeing and student agency. In addition to focusing on literacy, numeracy and workplace skills, the school spends 50% of the student's time "trying to address the reasons for disengagement through our wellbeing program. And we do that in a safe and supportive environment." The program is guided by the student and what they want to work on.

Experts agree that since the pandemic, there's been a far greater emphasis on wellbeing in schools, but how quickly and well most mainstream schools can adapt to cater for the increasing demand is an open question.

Westphal and Rogers have witnessed hundreds of stories of stressed children and families, but for them this is also a story about a stressed education system.

"We need schools where teachers have their needs met, where they're not stressed," says Westphal. "We need schools which can collaborate with parents to identify underlying stressors and find ways to resolve these. We need to understand that chronic stress leads to mental health problems. We need inclusive schools."

The School Can't administrators have temporarily put a hold on memberships. As volunteers with their "own kids in perpetual crisis", they can't keep up with demand.

The Victorian government recently announced a $200m commitment to ensure that every primary school will have a mental health and wellbeing leader within the next four years. In the meantime, however, Sylvie has considered remortgaging the house to send Jack to an expensive private school that does have welfare officers and psychologists.

"The state system is failing kids like Jack, who never cause any trouble and don't have a clear enough diagnosis for funding."

The toll has been substantial. "The situation with my son led to the breakdown of the relationship between my wife and her mum - too old-school to accept that ASD and school refusal is a real thing, she'd say 'all he needs is a firm hand'.

"Now both my wife and I are on antidepressants to help manage our own anxiety."

Malcolm has also been forced to interrogate society's expectations of his child and his own ideas of what success means. For his child, success now is simply establishing some level of independence. It is leaving the house.

Sylvie knows her current approach with Jack - of trying to stick it out, of making sure they're never away from school for more than a full week - is just a band-aid measure. Jack definitely worries about being away from school - and Sylvie knows it's "true that the more time they are away, the more out of the loop they are in the classroom and the playground". But she also knows that Jack would be happier staying home every day. "He has a better understanding of anxiety through his psychology sessions, he's a little more developed age-wise and we know the early signs. But it's not over. School holidays are a dream but I'm already dreading start of term."

A paediatrician just last week recommended anti-anxiety medication for Jack. "I'm very much on the fence," says Sylvie. "On the one hand I want to relieve the poor fella of suffering and exhaustion. But I also feel like the world could change a bit more before he should have to."

* Names have been changed for privacy