𝐥𝐞𝐚𝐯𝐢𝐧𝐠 𝐬𝐜𝐡𝐨𝐨𝐥 𝐚𝐭 𝐚𝐠𝐞 𝟏𝟐:
𝐧𝐚𝐯𝐢𝐠𝐚𝐭𝐢𝐧𝐠 𝐚 𝐬𝐲𝐬𝐭𝐞𝐦 𝐭𝐡𝐚𝐭 𝐰𝐚𝐬𝐧’𝐭 𝐛𝐮𝐢𝐥𝐭 𝐟𝐨𝐫 𝐦𝐞
my experience in education is a long and tiresome story - marked by the challenges I faced in a system that struggled to support students who didn't fit the mould. looking back now, I can see that my struggles in school stemmed from what was at the time - undiagnosed autism and ongoing trauma. neither I, my family, nor the school system understood what was happening with me. I just didn’t seem to fit, and no one knew how to ‘fix’ it or knew the cause of these struggles that made mainstream schooling extremely difficult for me.
my difficulties in in this area first became apparent when I started play school (preschool, nursery). I was that kid screaming, crying and holding onto my nana’s legs not wanting to be left in this unfamiliar place with unfamiliar people, activities and sensory experiences. oh gosh, how I screamed… even some of the people who worked at the play school at the time still remember it, there’s a particular woman who used to work there all those years ago, whom my nan still bumps into every now and then, and even she can recall my screaming and crying… from 22-23ish years ago. now of course from this time and my younger school years, a lot of it is from what I have been told, I don’t remember most of this, especially not in play school. but I always had a hard time interacting with other children and sharing the same space with them and that included sharing toys and things like that, I’d get very overwhelmed and upset so easily. they often had to call home for me to be picked up because I just couldn’t calm down and no one knew how to handle it. I eventually made friends with two little boys and got on as best as I could, I believe me making friends with these other children took a lot of work and pushing as I just couldn’t and wouldn’t do it.
eventually the time came to start primary school, now in play school I feel like you do just sometimes get those kids who scream and cry, but they grow out of it and end up being fine - that wasn’t me. I struggled just the same, maybe even worse when starting primary school. there’s photographs of me weeping, my face swollen and red with tears streaming down my cheeks on my first day and that continued. I used to scream, throw things, stand on tables and cry, yelling out for my nana, refusing or struggling to learn and engage, she had to be called semi regularly as I just couldn’t function in the classroom setting with other kids and all these unfamiliar and uncontrolled things. at the time, it was just seen as me throwing tantrums, but I was in actual deep distress.
because I would’ve only been 4 or 5 at this time, I don’t know if there was anything offered to support me, at least in school, I know that I did start seeing camhs (child and adolescent mental health services) from about the age of 5, but even there they didn’t know what was going on. although the focus of the story here is my distress and struggles in school, these struggles were going on outside of school too but not in the same ways or to the same extent, if I were left to just be or handled gently and patiently in a quiet space, I would sometimes be okay, but in my experience school is not gentle or patient or quiet, so it brought out the worst in me. the hardest part of this, is I was aware from a young age that no one else in my class that I could see, had these same struggles as me, I didn’t understand why - how were all these other kids okay here in this loud strange smelly unpredictable place? I remember even getting so anxious to even say “yes” when they would do the morning register, my way of communicating was quiet… unless I was screaming which was the only way I must’ve known how to express my distress.
time passed and eventually I was in year 1 and then 2, these struggles were still happening but by this time, I was learning to mask and learning to repress my feelings, there were times I couldn’t of course, certain things always caused me much more distress that I just couldn’t control like PE or having to read out loud etc. throughout my whole time in school I only participated in sports day once and that was only a half participation, I would get such anxiety and not understand what I was supposed to do and absolutely hated being watched and perceived, so again I would scream and cry, my grandparents would keep trying to help me participate but it was so upsetting for me, I remember the fear and the intense feeling of being overwhelmed and just wanting to be alone… it was so noisy, too.
now, I still myself don’t quite understand this - but myself and a couple of other kids in my class were considered “the smart kids” and were moved ahead into year 2 from year 1, I still don’t know if that makes much sense to me as I think we had to do year 2 twice, why would we have to do that if we were “smart”? but anyway, I was moved up because of my supposed intelligence. I always really enjoyed english, it was the one lesson I actually felt engaged in, I’ve always loved the written word and creating stories, I remember in year 3 or something there was a teachers assistant who always used to really encourage me and get excited to read my stories, that was really lovely and helped me feel more confident in my abilities. english is the one lesson I have ever felt I could do, but even that was hard sometimes as I have always struggled with instructions and never quite understand being told what I am supposed to do.
in these earlier years in primary school, I made friends with a few boys - which is strange considering i’ve always been quite girly, but I had two boy friends who I was more comfortable around than anyone else at school, I believe one of them could of actually been autistic looking back, he didn’t speak much which suited me, we were good friends. I don’t know what happened with them, I can’t remember, but aside from that - those two short lived friendships with these boys, I struggled so much socially. I tried to be friends with many different kids, boys and girls but it never lasted, I always ended up the butt of some joke I didn’t understand, teased, left out, mocked and bullied. there are a particular two girls and “friendships” I can remember now where they would drop me and pick me back up, then bully me and mock me, drop me and pick me back up… I was only picked back up when they fell out with their other friends, I was always a last choice and if I were to be anyone’s choice, it was because I was so eager to please, I’d do whatever they wanted.
I’d always struggle with roles in friendships and that translated to these school “friendships” I never knew where I stood and was always conflicted of the feeling of wanting to belong and be accepted but honestly, I’d just prefer to be alone reading, playing with my dolls or on the computers at break time.
my struggles were known by everyone at the school, most teachers, teaching assistants knew not to call on me in class or get me to read anything out as I would freak out, I was also allowed to go to the bathroom at any point because I had a lot of trouble knowing when I needed the toilet and would only realise when it was too late, so I was always allowed to go whenever I wanted, I sometimes just went to get a break if I am honest. although helpful, those little things like being allowed to go to the bathroom whenever I wanted - set me apart from the other kids even more, they noticed these things and would get annoyed and be unkind about how I was allowed to go whenever and they weren’t. in my opinion we should all be allowed to use the bathroom whenever we need to.
now, don’t get me wrong - there were times where I managed some friendships for a bit, I even had a little primary school boyfriend at one point and we went to the zoo together and out for dinner on valentine’s day once, I felt so grown up! but all these things were short winded as I just didn’t know how to communicate or compromise with others, my mental and sensory distress came out as anger and I was seen as a brat or too sensitive, as a child my family nicknamed me “the cryer” and would tease that I should be an actress because of my dramatics. I had to be heavily encouraged to make a go of these friendships, it was hard, I wanted to but I also really didn’t…
eventually I got to about year 4 or 5, now i’ve always had stomach issues and toilet issues, like the not knowing when I needed to go to the toilet thing, I also had bowel issues… gosh the amount of doctors I saw, I had a lot of health issues as a child but that’s another story. however, these toilet and stomach issues carried over into my schooling. I started getting such stomach pains and immense constipation, we tried so much different medicines, so many different doctors… there was a point I was up to taking up to 24 of these powdered drinks to help me go to the toilet a day. oh, something I forgot to mention also to do with my health and also PE essentially that caused more struggle is I’ve always had weak and painful joints, that also affected my ability to participate in certain things like PE. but anyway, my stomach would hurt all. the. time. it just kept getting worse and worse, there were times I couldn’t eat and had to live on these special milkshake meal replacements for a while, but with this stomach pain, I attended school less and less. now - what we didn’t know at the time was that this stomach pain was caused by anxiety which was caused by my autism, school was such a difficult and frightening place for me and it caught up to me, by this point I had learned to mask more but because I was repressing my distress more and more, it came out in the way of sickness, the stomach pain and toilet issues.
at lunches and break times I did try to play with the other kids sometimes, honestly mainly for my nana’s sake as she so wanted me to have friends, and I guess I did too, I think, but it was so difficult and would often result in bullying. I was always happier playing alone with a doll or on the computers, it was quieter in the computer area at lunch, I really liked that, I also adored to read and would try find a quiet corner and tuck into my favourite book. there was this certain one I’d just read over and over again. sometimes I tried to participate in lunchtime activities, there was a teaching assistant who did things like finger knitting, she was kind and patient and the environment was quiet, I liked that and I think doing finger knitting fulfilled a sort of sensory stimming need for me too, kept my hands busy and got some of that energy out.
year 5 was when I started to miss more school and then year 6, I wasn’t there for much of that at all. I believe sometimes my nan would pick up some work for me from school for me to do, but I was so upset and in pain all the time, I just spent my life in bed or on the sofa. however, we… or mainly I, noticed that when things like summer holidays came around, I’d feel a little better because obviously that pressure of school was gone for the time being. after seeing all these doctors for years and years, it was me who figured out it was down to some kind of anxiety.
the time came for me to move onto secondary school, I did have some extra support for this. there was a group of kids from different schools who got some extra help with the transition to secondary school, again looking back now I think it is obvious quite a few of these kids were autistic like me, although at this point we didn’t know I was autistic of course. but I was in this group that had some extra help, I don’t think it helped but I do appreciate the effort… it did help a little to see I wasn’t the only one struggling, I suppose. I really did try with secondary school, I tried to make friends and I tried to learn but I just couldn’t keep up, it was like at this time I had reached my peak intellectually and I couldn’t learn anything else. I spent most lessons just drawing in the margins of my books (as I often did in primary school, too) and again all my teachers were alerted that I was “different” and needed more time, patience, not to be called upon or asked to read aloud etc. of course this was noticed again by other kids and I was mocked and bullied which was getting quite severe at this point for being “weird” “different” and was literally told by other kids in a nasty way that I must have “special needs”, I felt so belittled and like I didn’t belong.
I tried to learn and to fit in but I just couldn’t keep up or retain information, my secondary school wasn’t huge but I could never figure out my way to my classes and whenever I tried to ask other kids, they were rude. I got so confused with where things were and didn’t understand my timetable. I also really struggled with lunch as most kids bought their lunches at school and you had to say what you wanted and hand over money and I immensely struggled with that so I often wouldn’t have anything or would bring something from home… then would get teased for that, too. the stomach pains were still persistent and I started attending school less and less, gosh I must’ve had the worst attendance! to be fair, we did try multiple options for me to try keep me in school, it just didn’t work - one was a reduced timetable so I’d only come in for some lessons, another was coming into school after school hours and doing a bit of work in the library and when I was immensely sick and basically bed bound, my nan would again collect my work from the school and bring it home. I was also allowed to leave school 15 minutes earlier than everyone else to help me avoid the stress of everyone leaving at the same time. so there was some effort in trying to accommodate me, but it wasn’t enough and it didn’t help that although we knew these stomach aches were down to anxiety, we still didn’t know why I had so much anxiety and struggled with all these things no one else seemed to. it was very isolating. I really did try… I really really did.
there were also other things like I was often written out of doing PE down to my joints and anxiety, again this set me apart and other kids were jealous I “didn’t have to do it”, it wasn’t a choice, I wasn’t being “let off” I was sick and undiagnosed autistic and immensely struggling. a weird one also - was I didn’t have to participate in food tech because I couldn’t understand the instructions and would get so overwhelmed and confused that I’d mess things up and panic, I also found the sensory experience of it all very challenging with the smells and different textures on my hands… under my nails… that really was one that set me apart from everyone else… I mean who ever heard of a kid being written out of doing food tech because they couldn’t hack it? it felt embarrassing, not being capable of these things that everyone else didn’t even need to give a second thought about doing.
but after continuously trying these alternate options to try to sort of keep me in mainstream school, eventually we just had to give up essentially and look for other options. the first was a mix of online learning and home tutoring. I even found the online learning to be such a challenge as it was still participating in a class, a class room chat, and that was difficult for me, if I could I just wouldn’t reply, of course I’d get into trouble for that. I also would try secretly play video games while attending my online learning but was caught out a few times for that, oops! the issue of me not understanding instructions or explanations was still very prevalent too, I didn’t know at this point that I am a very visual learner, I need things to be shown to me in detail, step by step if I have a chance of understanding and that wasn’t the way the online learning, or the school system in general, seemed to work. if anything, I found the home tutoring the most suited thing to me, but with that - my nans concerns for my continued isolation were getting worse and worse.
I had a few different tutors but one I finally clicked with was kate, oh kate, she is wonderful. I say is because she is still sort of in my life, I have her on facebook and she also attended our local pride event, as I did earlier this year and I spoke to her over messenger a bit about it. she was so empathetic and patient, I could not tell you how much that meant to me, yes there was attempted accommodation for me when I was still attending school but there was no patience, kindness or gentleness and that’s really what I needed and that is what kate provided. now, she would only come a few days a week for a few hours, but it was actually the best education I’ve ever received as it was one on one and she would explain everything to me in a way that would make sense, we would even talk and laugh and have coffee, if I was having an especially hard day I could even do my work in my pyjamas! kate also got on well and was a comfort to my nan, she helped us all. at this point I was 13 I believe.
kate also worked at this school, I don’t know what the actual term would be for it but I’ll just call it a special school. it was a very small place, maybe 12 students on the busiest days but it was a “school” for kids who couldn’t attend mainstream school due to mental health and/or disability, again looking back I am sure there were multiple autistic kids there, funny how I was always grouped with other autistic people, we just didn’t know I was autistic, too! so eventually we slowly transitioned from home tutoring to attending this special school… it was really fucking hard, like… really. I’d gotten used to my isolation at this point, my alone time, my own space, my own choices, a controlled environment, so moving back into a social setting for my education was so difficult. and whether it was due to autism or abuse or something else, my mental health had declined at this point, I think part of it was honestly being undiagnosed autistic, for me - that was a big trauma within myself, not knowing why I struggle so with every. little. thing.
something positive was that I knew someone at this school, I’ve mentioned her before on this blog… I refer to her on here as “L”, now I met L on the online learning, my nan was trying to encourage me to interact with the other students and we found out that L lived the next town over, we became dependently close. but having her there helped so much, I don’t think I would’ve ever gotten through those doors even once if it weren’t for L and kate, and my grandparents, even if we all didn’t know what was going on with me, I did have people trying to support me, just often that support came about in the wrong way as we didn’t know or understand my needs at this point.
L had a lot of similar social struggles to me so we understood each other, sometimes I think we bounced off of each other a bit but we did understand each other. often trying to get through those doors caused me to have huge panic attacks and meltdowns, I would run off and would have to be searched for to be found, or if I didn’t run off and by some miracle I made it through the doors, it took a lot of encouragement and help from people, mainly kate. there was a room in this special school that she would take me to calm down in, it had a cosy sofa and the lighting wasn’t too strong, sometimes we would go in there and have chocolate cake and just talk until I felt able to do anything else - sometimes I didn’t even manage to do anything else, but at this point just getting me in there was a victory.
something else we would do there was “forest school”, once a week some guy would take us all to the forest, I was the only one who truly struggled with that - during forest school we were expected to do different things like lighting a fire and I just couldn’t take in and understand what I needed to do and I also panicked often over the fear of being perceived, so forest school for me mainly consisted of me very upset or quietly on the sidelines. I hated it, I even hated the journey there, it wasn’t too long but it was all of us crammed on this little mini bus, the noise bounced off the walls and the air didn’t move, horrible horrible.
but, slowly slowly I started to settle into this special school, I never got completely settled but I was on my way, then… it shut down. that was devastating for everyone. bless my nan, she fought so hard to try keep it open, letters and appeals, but it didn’t work. I was either 14 or almost 14 at this point and after that, I just didn’t have any education anymore, i’m not quite sure why… I was very sick though, at that age I started to have hallucinations and eating issues, but once again that’s another story!
that is basically the entirety of my education journey, or as much as I can remember of it, aside from one thing. at age 17, I tried college… I lasted two weeks and had a meltdown and never went back. caused by the same issues, struggling to learn, instructions, being perceived, the environment, noise, movement, not knowing where to go etc,… I did also have extra help trying to settle into college but it really just wasn’t for me. I was so upset with myself that I only lasted two weeks and left in a huge panicky meltdown after I tried to explain to a lecturer I was late because I was immensely struggling and they told me it is no excuse. I tried, as I always have done and always will do - I tried.
and well, that’s the end of this tale! there are probably a lot more details I could’ve added and maybe will do in the future but it is already a very long story and a bit distressing to relive, it makes me sad for that girl… well, me. we had no idea what was going on with me, it was awful. I absolutely hated myself for not being able to be in school like other people, I was so embarrassed and disappointed in myself. I’m not anymore though, knowing why - that helps A LOT. I wish I had known then, maybe I could’ve gotten more of the right kind of support or at least not beaten myself up over it so much, but I know now and am accommodating my life to my needs. maybe one day I can try doing some kind of a course online, but we shall see, for now I am focusing on improving my wellbeing and quality of life.
I am glad my years in the education system are long over. there definitely needs to be more accessible and reliable options than mainstream schooling, maybe there are these days, I really do hope so, I hope other autistic kids are getting better opportunities and having their needs listened to… thank goodness that is all behind me!
P.S. I forgot to mention in year 3 or 4, I was offered some counselling at school, during school hours and did try that for a while, even just to get out of class for a bit! it didn’t help but I remember it so clearly. the lady was called denise and she had long fake nails and those bracelets that all clink together.
