Behind the doors: Giving children with SEND and mental health the voice they deserve

After the covid pandemic, when thousands of children didn’t return to school, politicians, think tanks and commissioners started to talk about “ghost children”. The chair of the Educational Select Committee at the time argued,

“According to the Children’s Commissioner, over 124,000 “ghost children” have still not returned to school. It is also particularly concerning that the Centre for Social Justice reported that before March 2022, 13,000 pupils in exam-critical years were missing from the system and the latest figures published by Education DataLab suggest that 5% of pupils were severely absent from September to May of this year. We cannot risk these children becoming an ‘Oliver Twist’ generation, slipping through the cracks and lost to the system forever”.

The term became briefly popular in certain circles, with mixed reactions, with some parents and professionals understandably pointing out that rather than being ghost children, it was more accurate to describe that they “were being ghosted” by systems that were not meeting the needs of the children and families who most needed to be seen and heard.

For professionals, parents, carers and children involved in these debates or subject to them, the fact that there was a problem with accessing school and education, or that they were increasingly isolated, was hardly news. It's simply the day-to-day reality of their lives.

There might be all kinds of reasons why a young person can’t access school. These days we often talk about EBSA, Emotionally Based School Avoidance, which is when a child is regularly absent from school, or cannot attend at all, due to anxiety or other emotional or physical distress.

According to a 2024 report examining the post-pandemic context in the British Medical Journal, BMJ, it “does not constitute a psychiatric diagnosis in its own right but often co-occurs with diagnoses of anxiety and/or mood disorders”. The BMJ found EBSA resulted in missed schooling for an estimated 1% to 5% of the school population across England, whilst a separate study by UCL on a sample of 500 autistic young people found that 43% were persistently absent from school, observing that: “Missing school is a complex phenomenon that involves the child, the family and the school. Not to mention wider factors like education policies and child mental health services”.

With Loneliness Awareness Week approaching, we want to talk about what often gets missed in the stats and the debate, and the fact that, as so often is the case, when things trend and then become older news, there are still thousands of children and young people and their families not able to access school, at home, behind doors.

It is not the case that all of these children and young people and their families are lonely or socially isolated. But many are. And when your child can’t go to school, can’t leave their bedroom, the living room, or step out of the front door, it is a whole different level of social isolation which can take place.

Parents often stop being able to work, which creates huge financial and social pressure. They can’t go out and “take a walk”, they can’t get to the shops. Children can’t join clubs or activities, or spend time with wider friends and families. The impact can be profound.

We have worked with families where it’s been over a year since a child was able to leave their house, years since they saw a friend. In some cases, sensory needs or anxiety means that just the idea of having a window open or curtains drawn can trigger significant anxiety. How do you access the GP? How do you get to the shops to buy milk? All of these things become huge tasks that affect people in complex, intersecting ways, and sometimes just trying to explain them can feel heavy and exhausting, making you feel more alone than when you started that sentence.

These children and families want support and solutions. If you ever want to find expertise on neurodivergence, SEND and mental health, you will find thousands of parents and carers who spend every waking minute researching, seeking support, trying, trying and trying again.

It is still the case that the social stigma around loneliness is so high that, even then, it can be rare to want to vocalise this. To say “I am really lonely, we are really lonely, my child is lonely”. Because it’s a really hard and painful thing to say, especially when you are trying your hardest to be positive and brave, because there’s not really an option not to be. It’s also incredibly tender to consider your child being lonely, even for a minute. Because we are taught that loneliness is somehow the feeling or experience that we shouldn’t have.

At Love Squared, we say, “we don’t have magic wands” and it’s true, we don’t have any special solutions that these amazing young people and parents and carers and the hard-working school staff won’t have thought of, probably a million times. But we also say that every young person has a right to have their story remembered and considered with sensitivity, curiosity, love and imagination.

And we also know that things can and do get better with the right interventions and the right individualised care and support. It’s not straightforward, it’s often not linear, and it’s not our job to project language or terms that people don’t feel are right for them.

But if we had to say one thing this Loneliness Awareness Week, where the theme is “Giving Loneliness a Voice”, it would be this: please take a minute to hear the voices of those who don’t get to turn up at the school gates, who don’t get to leave their houses to go for walks, or the shops, or get to work. If you’ve got a friend who has disappeared off your radar because their child has stopped coming to school, message them if you can.

And if you are one of these thousands of young people and families, remember that you are not alone, even if it really does often feel like that. There is no shame in feeling lonely, and whatever you might feel at 2am, there will be a path forward, even if it’s tender, tricky, and doesn’t look like the other paths.

So if you are joining the campaign #GivingLonelinessAVoice this year, please let’s use it to consider and help give voice to the experience of lives, full, vibrant, complex emotional lives, that sometimes, for the time being at least, take place behind closed doors.