Here we go again! Back to the anxiety riddled nights, frantic mornings, constant emails back and forth with school staff as we try to contend with the aspect of life we don’t even talk about during the holidays. Also referred to as "back to school"!
From mid August to mid September every year, Facebook and Instagram are awash with photos of children in pristine school uniforms as schools across the UK begin to reopen their doors after the long summer holidays. My own kids too used to stand for a quick photo at the front door before heading off for the first day of a new year.
These days, however, the return to school is approached with far too much caution and trepidation to be taking photos. While it’s always lovely to see familiar faces and see how children I know are growing up, I’m now so conscious of the children who are not appearing in such photos - including my own son.
While my daughter is just at an age where photos in school uniform would not be cool, my son has more reason to not want to pose for photographs on the first day, or any day for that matter. For him, going back to school after the holidays is the culmination of weeks of feeling nervous, even more so than “normal” school days. I don’t think I’d be exaggerating to say it’s a traumatic day.
All the way through primary school, he masked. Teachers assured us he just needed to be more resilient and, I’m ashamed now to say, we encouraged him to keep going to school. Now, things are so different. Autistic burnout changed everything. We finally understand just how damaging school has been for our son and will not subject him to any further damage.
So as the majority of children, including my own daughter, head back to school for an exhausting day of catching up with friends, meeting new teachers and settling into new classrooms, we also set off for school but to a day designed just for Jamie. I say a day, in fact it’s one hour. One hour of reading his book and the school day is done. This has been his school “day” since starting high school which coincided with autistic burnout. We’re now starting S3 (third year of secondary for readers outside Scotland) and haven’t managed to progress beyond this. That’s OK though, because we know to push for more would be damaging.
That’s a very brief snapshot of Jamie’s school day. However, I’m not writing this to discuss only Jamie’s experience of the return to school but to acknowledge the thousands of children for whom it is a genuinely traumatic event. One that they are often expected to repeat 5 days per week for 39 weeks of the year.
I’ve seen today, as she embarked on her final year of school, just how exhausted my neurotypical daughter was by the end of the day. It struck me, by no means for the first time, just how unsuitable the school environment is for neurodiverse children. This is why, in my humble opinion, there are thousands of children unable to attend school.
Dr. Naomi Fisher once used an analogy which has stuck with me: our neurodiverse children are like the canaries which were historically sent down coal mines. If the canary succumbed to the presence of carbon monoxide, the miners took that as a warning to take action. Neurodiverse children up and down the country are sending clear signals that the school environment is dangerous for their mental health. Yet little is changing.
When your child struggles to attend school, it can feel very isolating so meeting others facing similar struggles is such a relief. As well as drawing knowledge and support from books, podcasts and online parent communities, I also have friends “in real life” who I know will feel that little stab of sadness, just as I do, when they see all the back to school facebook posts. I have friends whose children are attending for the same amount of time as Jamie, some who manage a full morning and some who have been unable to set foot in school for the last 3 years. We are just a tiny microcosm.
Across the UK there are thousands of children and families struggling not just on the first day of term but throughout the year. Many of these children are suffering with school distress, also referred to as school refusal or emotionally based school avoidance. They’re the canaries and we must listen to them.
A recent study published just last month found that 92.1% of children who have problems with school attendance are neurodivergent with 83.4% being autistic, as in our case. This compounds my feeling that, for many autistic children, school is not the best place for them to learn. The study acknowledged the reduced distress levels of children who were home educated but recognised that this is not a feasible option for all families dealing with school distress. So where can these children learn? (Rhetorical question I’m afraid.)
Having spent the last two years reading about the grim experiences of other families, I now appreciate that we are actually in a relatively fortunate position. The staff who have supported Jamie since starting high school are caring, nurturing and doing everything they can think of to help him to feel more comfortable in school. But it’s not really working. I’m not sure that Jamie is ever going to feel comfortable in a school environment. And over the past two years, I’ve been horrified to realise just how many families are facing similar challenges. As an ex-teacher, I know that there are also many many teachers who wish the system was much better able to support children who are neurodiverse. In our case certainly, the problem is not the staff in school - it’s school building, the structure of the curriculum…the education system.
Some of you must be wondering by now why we haven’t just removed Jamie from school altogether. In short, he wants to keep trying despite the anxiety around school. So we’ll continue to keep working with his school to support him.
I feel so fortunate that because we’re in Scotland rather than England, we don’t have to face the additional threat of non attendance fines for days when Jamie needs a “Can’t Do It Day”. I mentioned earlier that I simply won’t subject my child to unnecessary distress for the sake of attendance figures but I’m very conscious that this would be a much harder stance to take if I lived south of the border.
Every time I read about fines, my heart goes out to the desperate parents who, in my eyes, want to protect their child but are essentially being forced to send them into a damaging environment or else face repercussions in the form of fines and court proceedings. I’m referring to children who are genuinely distressed and suffering mental and physical ill health because their school setting is not designed or equipped to meet their needs. It seems to me that some attendance policies are focussed purely on attendance figures, sadly with disregard to the impact on children, families and school staff.
So as we begin the process of easing ourselves into a new school year, I’ve finally accepted that while I’m not in a position to overhaul the whole system, I can protect my boy from the aspects which will not be beneficial for him. We’ve chosen to see the Scottish Education System as a smorgasbord. Each of our children will take from it what is suitable for them. We will appreciate all the work which goes into delivering their education but will politely and firmly turn down any unsuitable offerings. Hopefully, in the future, what’s on offer will cater for neurodiverse learners in a way that has not yet been managed by many schools.
Of course I wish that my son was able to access more of the education he is entitled to. But not at the risk of detriment to his health or happiness. I’ve accepted that this is where we’re at right now. He has an extraordinary brain and I believe that he will use it to do wonderful things. We’re just going to have to continue to explore learning styles and environments which suit him.
For all my friends sharing your happy “first day” photos - don’t stop! It’s lovely to see your children’s smiling faces (with their permission of course!). You’re allowed to be happy for and proud of them. Why shouldn’t you celebrate their milestones and share them with friends?
But for my friends who, like us, will not have cheerful back to school photos to look back on, know that you are not alone. I’ve drawn real comfort from reading about the other families who are trying desperately to support and protect their children. The Not Fine In School private Facebook has amassed a membership of over 61,000 and offers compassion and support from parents desperate to support their children who are experiencing school distress.
Be honest with others, never ashamed, about what you and your child are going through - you’re likely to be surprised by the number of people who can relate to your situation.
For further information and support, you might find these links useful:
Not Fine in School Website - A parent led organisation which provides support for families with attendance difficulties
Dr. Naomi Fisher - A clinical psychologist who specialises in trauma, autism and alternative approaches to education
Study by Dr Sinéad Mullally - “Children at the frontline - neurodivergence and school distress”
Wow, jus wow. My heart goes out you. I could not imagine trying to advocate for your child and have it feel unheard. You should be so proud to always stand up for what your child needs.
This is a great post- I learnt a lot. Thank you for sharing. Wishing you, Jamie and the family all the best.
Great post! I commend you for doing what is best for your family. I recently read a book called Homeschool Rising that talked a lot about how we have this idea of “keeping up” or “kids learning what they’re supposed to at their age” but in reality everyone learns at their own pace in their own way. I think it’s great that you are taking the time to explore your options.
Very beautiful post.. have a friend who goes through the same thing every year.. thanks
Totally relatable; although my child is away in college but I remeber these old days. High time anxiety but it will pass. It is a great post and informative (thetreasureboxlifetyle.blog)