Not Fine in School is a phrase far too many families currently relate to. Is it children or parents at fault, or is it perhaps the education system that needs an overhaul? School refusal is a phrase which has been overused for many years - throwing the blame firmly at the feet of the children who are unable to attend. School anxiety, school-based anxiety or school induced anxiety are sometimes suggested as better alternatives, or the term 'School Attendance Barriers' as preferred by the team behind the Not Fine in School website. Forcing children into school and into an environment which does not meet their needs is not going to help them overcome anxiety.
Many parents are told that their children are fine once they are in school. But it is often the case that children who seem 'fine' once they have been forced into school end up actually masking and internalising all the stress and anxiety.
The experience shared here, for week 17 of the Not Fine in School series, comes from a young autistic woman with ADHD. Emily has a blog www.authenticallyemily.uk and shares helpful resources on her social media channels (as @itsemilykaty). She is well known on for her honesty about how she struggled with her mental health from the age of 13, which led to being sectioned, aged 16, on a children’s mental health unit. Emily was diagnosed with autism just before her 17th birthday and with ADHD at the age of 21. Her blog posts about Sports Day and What I Wish Schools Knew About Supporting Autistic and ADHD Children are well worth a read once you've finished this post.
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“The education system that I thrived in was the same education system that broke me”: My ‘Not Fine in School’ Story
When a child or young person is ‘not fine in school’, there is a tendency to only consider what is happening now, without thinking about the years that have come before. The years which mark the beginning of their journey through the education system and shape the foundation of their school experience. Children who are ‘not fine in school’ often don’t start out ‘not fine’. Sometimes, they start out happy.
My school report from year 3 states that “Emily is a bright and cheerful child who enjoys all aspects of school life.” My year 6 report echoes this. I was practically a model student - a child every teacher loved having in their class, and a child who loved being taught. Yet somehow, by year 9, I was ‘on the verge of school refusing’. I was rocking under desks, having panic attacks. My parents were receiving daily phone calls home. I was running away from school, self-harming, and refusing to go into lessons, hiding in the library instead. I was now a child teachers had to battle with to get into the classroom. But nobody could understand why.
How was it that, in less than three years, a happy child who excelled academically and seemingly thrived in education, had become the complete opposite?
You can’t answer this question about any young person who is ‘not fine in school’ without considering their school journey and experience through the education system from the beginning.
I went to the local village primary school, a nurturing environment, with kind and gentle teachers. I loved learning (apart from maths and science), but adored English in particular. I was told I had “a habit of turning most pieces of work into a story”. I loved going to school, until around year 4 when the bullying started. Although my self-confidence had never been great, this started to massively affect both how I saw myself and my feelings about school. For the first time, I felt sick going in. I knew I was different, and although I saw the good in everyone and wanted to be kind to everyone, I was starting to learn that others were not all the same. But these difficult times would come and go, and I felt loved by the adults around me. I was absorbed by books during both lessons and break-times, as well as by the new projects I was constantly starting – the weekly school newsletter I started took up a surprising amount of time!
I was excited to start secondary school. Enid Blyton had created a very romanticised idea of it in my mind and I envisioned making potions in Chemistry and pulling pranks on teachers. Mainly, though, I was excited to get away from the girls at primary school.
But it was a very different place to what I had expected. Whereas at primary, I had felt nurtured and supported by my teachers, at secondary school I quickly learned that despite there being some wonderful teachers (who helped me very much), there were some who were not on my side. One maths lesson, I had forgotten my protractor. My maths teacher was scary, and I was terrified of telling her. When I did, she told me off in-front of the class. I cried and hyperventilated in my chair, completely beside myself. I was so scared of being told off. From that day on, I checked my bag three times before school and felt anxious each morning about forgetting something.
It wasn’t just this which made me anxious. There were so many things. I had liked the safety of having one teacher who knew me and worked with me to build my self-confidence. Now, there were so many unfamiliar teachers, who I didn’t know how to ask for help from when I didn’t understand. When I had asked the same maths teacher for help, she told me I should understand, and she wouldn’t explain it – so I sat in the lesson unable to answer the questions, feeling more and more worked up by the minute.
Then there was the number of other children. The canteen felt suffocating. There was so much noise. There were also the rules like standing up for the headmaster in assembly which didn’t make sense, and I never quite knew when there was an expectation to do something like this or how to remember when to do what. Learning didn’t feel like fun anymore. Content was taught in class to pass tests, and my perfectionism meant I pushed myself too hard to try to get the top marks. I was worried if I didn’t, I’d be told off.
My anxiety grew and grew until it couldn’t stay inside anymore, and shortly after my Grandfather passed away, I began having uncontrollable panic attacks and meltdowns. My anxiety became visible to everyone around me. I stopped being able to wait until I’d reached the toilet before crying, and started finding myself rocking under the desks in class whenever I felt slightly threatened by an unfamiliar teacher or of not knowing what was expected of me or of feeling overwhelmed by the noise. My anxiety just wouldn’t stay inside anymore.
I feel sad thinking about my seven-year-old self who just wanted to learn and was so excited for school. The education system that I thrived in was the same education system that broke me. And that is despite my school being quite accommodating and making a lot of reasonable adjustments.
I am 22 now. A fair few years out of school. I received my diagnoses of autism at 16, and ADHD at 21. Now, I go to work, and if I forget something, I just feel frustrated at myself. I don’t worry that I am going to be shouted at. I can get out of my chair and walk around the office or the building when I am restless or need a breather. I don’t have to sit still. If I need the toilet, I can go when it’s convenient. I don’t have to wait for two hours until breaktime. I can eat a snack if I am hungry, and not have to wait until it is timetabled in. I can wear clothes which don’t itch and don’t bring my skin out in rashes. I am learning that my worth is not based on my grades, but on who I am as a person. And I don’t feel constantly terrified of getting something wrong, of getting in trouble, or of being pushed into a situation I feel overwhelmed or uncomfortable by – which was the case every day at school.
I have never felt happier, and that is sad, because I should have been able to feel happy at school. No education system should make a child feel such fear every day.
Thanks to Emily for sharing this experience - one which I am sure will resonate with many parents and other young autistic women. We need to keep talking, keep explaining that these are the kinds of hurdles being faced every day by some children in schools.
If you feel able to write about your family's 'not fine in school' story please email me at stephstwogirls@gmail.com. I understand that it can be difficult for some families to talk openly about this topic for fear of repurcussions, and for that reason we can anonymise posts.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). Square Peg is an organisation making great strides in terms of raising awareness across different media formats, and also looking into legal challenges around attendance policies. There are many supporters behind the scenes and in the Not Fine In School Facebook group who have been, or are going, through difficult times during the school years. Plenty of knowledge is being shared which makes a real difference to other families. If the system is not fit for purpose we need to shout that out loud. Please help, by sharing your story or sharing this post to get the message out there.
For the other posts in this series please click Not Fine in School to see all posts or the weeks below (short extracts given here):
Week 1 of Not Fine In School
"My daughter said school felt like prison. She felt six hours a day of constant concentration was too much – it literally frazzled her brain. Since deregistering our daughter her daily headaches have disappeared. She sleeps better as she isn’t worrying about the next day."
Week 2 of Not Fine In School
"Keep pushing her until she has a breakdown. We need to see it happen.”
Those are the words our SEN caseworker said to me when I told her my daughter's secondary school placement was unsuitable."
Week 3 of Not Fine In School
"At the beginning of Year 6 he started to school refuse and had a high level of separation anxiety. Over the next three months we struggled. I made him go to school, sat in school with him for hours, came back at set times to show him that I would come back, but nothing helped. His behaviour was very volatile and the school were struggling to cope. When I woke him up in the morning his first words were “I'm not going”. He would refuse to get up, or get dressed, would be very tearful and plead with me not to take him. I dreaded every morning as he did."
Week 4 of Not Fine In School
"She was given detentions and was sanctioned because of her attendance. I always complained and they stopped it but in every incident, more damage was done. She went to 70% attendance. I reapplied to CAMHS for crisis intervention as she was depressed and talking about not wanting to exist anymore. In December 2020 we were given medical intervention and I pulled her out of school. She is now in Year 9 and school have arranged for her to be on a part-time timetable."
Week 5 of Not Fine In School - Eliza Fricker, Missing The Mark
"As families we have explored everything to help our children to manage to go to school and yet the pressure and the anxiety of the school day are overwhelming for them.
This leads to enormous guilt on our part as we have failed to achieve one of the most basic parenting exercises- to get our children to school (we are also appalling at any textbook bedtimes too, in case you need to know).
So we live for many years as parents, as mothers, as women, feeling the guilt and judgement that we have failed.
We lose friendships and family who struggle to understand, our relationships become consumed by this, our careers often end, as we cannot manage it all."
Week 6 of Not Fine In School
"I was on a knife-edge the entire time he was at primary school, waiting to get that call to come and calm him down (the perils of being a freelancer, working from home) or for the teacher to beckon me over at pick-up time to talk about the latest ‘incident’.
The school told me outright that he wouldn’t get an EHCP and that I could apply on my own, but it probably wasn’t worth it. Undeterred, I sought the help of a professional who could help me navigate the difficult system."
Week 7 of Not Fine In School
"As I said before, the SENCO at his current school is doing the best she can. But my son has been struggling in mainstream school since last September, to the point that he has already been temporarily excluded twice, and has only been in for a couple of hours a day since they went back in March. He has regressed against all his EHCP outcomes, and is spending what short time he is in school separated from the other children (too many aggressive meltdowns when with the class) - just him and 1 or 2 teachers in a room, doing their best to keep him happy and calm while he plays. Any attempt to bring in some sort of learning, even well-disguised, triggers his anxiety. So he’s getting no benefit, educational or social, from being there."
Week 8 of Not Fine In School
"I had been warning both the school and the local authority since the beginning of the year, about my daughters school anxiety, the sheer amount of effort, it was taking to get her to school was exhausting for both of us; and seeing her freeze at the school gate and beg not to go in was heart-wrenching for me, but I felt blamed by the school as if it was my fault, because she has a typical female presentation of autism, and an all too familiar story, where she masked in school and let it all out at home with Violent and Challenging Behaviour (VCB) in her safe space- the classic Jekyll and Hyde presentation.
When she was first awarded her EHCP a year ago, I wanted a specialist placement for her then, but her mainstream primary was named. I was told then by the Local Authority that she would have to “fail” at mainstream before they would even consider a special school placement for her."
Week 9 of Not Fine In School
"My son is nearly 10 years old and is a shadow of the boy he used to be. It breaks my heart just thinking about it. He started in a small village school at 4 years old. His older sister also attended and loved it. We started noticing he was having difficulties with other children that same year and was falling out with them on a daily basis. I was called in a few times to speak to his teacher about incidents that had happened but it was just out down to “bad choices” and, because he is so bright, they just shrugged it off and said he would grow out of it.
Week 10 of Not Fine In School
"From the very first full day at school our daughter struggled. She vomited every lunchtime pretty much as soon as the bell went; we were never sure if it was the bell or the thought of the dinner hall that terrified her. Very quickly she was vomiting before school and getting extremely distressed about going, clinging to me in the playground and screaming. It was awful."
Week 11 of Not Fine In School
"The problem here, is that school still followed the reward, consequence method so the inconsistencies weren’t helping him at all. He managed to scrape his way through the reception year without too many major issues, other than the odd school fight. I was the mum who’d get called over to chat to the teacher at the end of the day. I loathed this, as I could see my son squirming next to the teacher as they talked about him making ‘poor choices’. His response upon leaving school was often ‘flight’, he loved the freedom from being outside of the school gates, and I was the crazed mum weaving in and out of other parents chasing him down the road."
Week 12 of Not Fine In School
"After a long fight to see the paediatrician, our son was diagnosed with Autism (PDA profile) at the age of six. School put in strategies based on this diagnosis but it still wasn’t enough. We applied for an EHCP and during that assessment the Educational Psychologist advised a specialist setting, so we began our search for a special education school. However, as our son is a bright boy, specialist schools told us they could not meet his needs as he was not behind academically. So we were stuck between a rock and a hard place - mainstream schools couldn’t meet his needs and special schools were saying they couldn’t meet his needs."
Week 13 of Not Fine In School
"There was two teachers one that was caring and one that was well...not or at least to me didn't seem to care. The promises made were broken, they got funding for me yet I was not seeing any of that. The SEN room days went from 4, to 3, to 2, to 1... then it was all about integration and getting me to adapt. When that didn't work, I was placed in this open corridor space... alone with a book of my choosing, with a monitor person."
Week 14 of Not Fine in School
"Masking is a way of hiding your true feelings. Usually because you don’t feel safe or happy and someone around you doesn’t like how you are feeling or understand what you need.
Masking is exhausting and adds weight to my shoulders.
But it makes other people happy because I’m doing what they want, even if it is making me feel very bad, sad and hurt.
Masking usually leads to a meltdown."
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