ARCHIVED Schooling for Autism – How to survive it
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
I blog this piece in hindsight, as all through my schooling I wasn’t actually aware I was autistic, just that I couldn’t cope and was a little on the weird side. I often wonder if it would have been helpful to have known, if I would have received more support, or whether I wouldn’t have pushed myself as hard to make it through and go off to University as I did. With an increasing number of specialist autism schools opening around the UK, and more and more parents having to make the very hard decision of whether to send their autistic child to one of these schools or to a mainstream school, I have decided to write my personal story of trying to get through mainstream education, and the hurdles I experienced along the way…
I often gave the illusion of loving school, when in fact it was only buying and collecting all my new school stationary and equipment before the start of a new year that kept me going. My mum realised school was going to be a 12 year battle after I first started in reception class, where I cried for 3 weeks solid whenever she left me, and for at least 8 months I had selective mutism, refusing to talk to a soul there, even when my name was called out multiple times from the register. Fortunately for her, she clocked that my love of stationary and shopping would provide some rather useful positive conditioning, so every year we would embark on multiple trips to WHSmith for new sets of matching stationary and bags, which I would then spend the summer holidays organising as a way to prepare myself. It couldn’t have been a too bad a technique as it still works on me today. In order to encourage me to go to university we spent the summer stock piling all my new kitchen and bedroom kit, and then when I almost dropped out in my second year, it was the new Cath Kidston Crockery set which forced me back. I still get pangs of nostalgia when I see the back to school kits in shops, and know that one day I will give into temptation and buy the lot.
I often see school children now and think ‘how are you doing it!?” It wasn’t that I was no good at school or had no friends; I was always in the top to middle classes and had ample friends to choose to play with and see after school, at weekends, and during the holidays. It was just that it always felt like I was on a fast train I couldn’t get off, everything at school went too fast and this would take its toll both mentally and physically. In primary school I had a lot of unexplained illness absences, vague stomach complaints and general unwellness. I looked forward to those days where I could curl up on my Nanna’s sofa, eating the Milky Ways from her sweet tin whilst watching the TV with my Granddad, as he smoked his lungs away. Mentally, even as young as eight it took its toll as well. I remember several times I was so overcome by anxiety at school that it would result in panic attacks, once running around the school not being able to breathe because a bee had stung me (my best friend loves to remind me of this embarrassing story). I developed several phobias and OCD behaviours, mostly around contamination and illness; it felt like the only thing I could really control. All through my school career I seemed to relate a little too well to the adults, always befriending the teaching assistants and helpers. Despite this I was well liked at school and took part in an as much as I could, no matter how nervous it made me.
Nine years of battling this anxiety, however, takes its toll. I’d transitioned over to Secondary School and things started to become a little more complicated. There was more pressure to do well in classes and to start looking towards the future, the days were longer, the buildings busier, the social pressure was greater, my coping strategies were not adept enough to deal with the ever changing environment I was trapped in. Due to menstrual problems I gradually started to have more and more days off sick. I couldn’t even comprehend managing five days in a row as I was too exhausted. Vague stomach problems began to surface and I was overcome by a fear of going at all. I felt ill but sometimes I couldn’t pinpoint why, I just knew I was too ill for school. It wasn’t School Phobia as many of the professionals involved at the time wanted to believe, when I knew I was well enough there was no fear at all, it just took me days to charge up my batteries again for one day in the classroom. The doctors couldn’t pin point what was wrong and by some I was told to stop skiving and go to school, which obviously did not help my growing panic. Despite this it took the school a full year to notice my absences and finally help me. Many teachers did not have the time, but three in particular were an incredible help. One phoned me regularly to keep me updated with all the gossip from my form group, and two others regularly sent me work and messages of encouragement; I was so desperate to teach myself and not to miss out and get behind on the work.
Eventually I was referred onto the Secondary Support Services in my area, who were able to send tutors in to home school me. Although I am incredibly grateful of their help now, at the time I was more frustrated by how under qualified they were. There was nothing wrong with me intellectually and in some cases I knew more on the subject than my tutor. For instance my maths tutor had only received a C at GCSE maths a year previous, I was teaching myself the higher paper! I grew overly comfortable in my little routine at home. My mum and dad would go off to work, I would get up late and watch the day time TV whilst reading my books, I’d see a tutor and spend the afternoon doing all my homework, and any extra work I could whilst playing my music on full volume, eagerly waiting my mum to come home and for the evening soaps to start. Occasionally a friend would call or pop round but most of them I lost; kids are fickle at that age. For at least 10 months I can’t have left the house at all apart from doctors and hospital appointments, which would overwhelm me with fear every time. I remember the day I walked the 100 meters up the road to post a letter as being a momentous occasion, and how shocked my parents had both been.
During this time, apart from doctors investigating my stomach complaint, I received no other help. Now it seems almost unbelievable that the school didn’t step in more or that I wasn’t referred to a counsellor or psychologist. My Asperger’s, which was so obvious during my early childhood, had been hidden under a tangled web of anxiety and bowel issues, and as long as my grades were good, that’s mostly all the school cared about. Something must have happened near the end of my GCSE year, I think possibly I received a diagnosis for Irritable Bowel Syndrome, or I started taking a pill to reduce my anxiety, but I wanted to go out again and I had the energy to do it. I picked my exam results up at school, greeting my old friends and the teachers as though I’d never been away, perhaps just to show them that I had done it on my own and that I hadn’t needed them. I left school with five GCSE’s, none in science or foreign languages, but I had been accepted into college and was excited to start the next academic year, and for that summer it seemed like I was back on track.
The lessons to be taken away from my story of mainstream school are how much impact the tiniest bit of support can have on a student struggling with school life. Had I had things like a separate room to sit in if I’d become overwhelmed, a toilet pass, extra time on work and assignments, teachers who knew I was ill and knew how to help, fewer lessons to attend, a shorter day, and possibly a mentor, I have no doubt that I would have survived secondary school and come out with far more GCSEs. So do I think special schools for autism are a positive step? Hell yes. I had a long period of mourning these lost years and felt a lot of anger towards those who made my struggle so much worse; it wasn’t just school I missed but also the social life and milestones that came with it. I often think about who I would have been had I stayed in school. My main interests were in music and PE and I was a confident public speaker, but after dropping out my focus became writing, English and Art, then later Photography and Psychology. On positive days I feel it was fate that drove me to where I am now, but realistically I think it was just a lot of hard work and trying to prove people wrong, which I continue to still strive to accomplish!
Helpful site for everything you need to know to help your child cope with school:
http://www.autism.org.uk/working-with/education.aspx
Dr Hannah Louise Belcher 