Autism: a wider blog post
A while ago I did a blog post about my autism and my anorexia, talking about how the two affect each other. Today I wanted to make a blog post about how autism has affected other parts of my life, and what being autistic means to me.
Almost as soon as I started primary school, my teachers picked up that I was different. I wasn’t particularly interested in playing with other children. I was clumsy in my movements and had difficulty with my hand-eye coordination. I made strange faces. I had a bizzare habit that my parents called “flapping” which involved tearing up pieces of paper, twisting them at the bottom, and waving them around.
My parents and teachers immediately became concerned about my lack of desire to socialise and my abysmal hand eye coordination. I was tested for dyspraxia but was not diagnosed. I went through key stage one not quite knowing why I wasn’t like the other pupils in my class. Why I was content with just one friend and felt no need to make more. Why I had to do this strange “flapping” or else I would become restless.
It was around years two and three (academic years, not ages) that the word “autism” began to be thrown around as an explanation as to why I was so different. And then one day, when I was seven years old, my parents drove me up to a big old building near our town. This was a CAMHS institution, the very same CAMHS that I would be referred to a decade later for anorexia treatment. It was there that we met a doctor who asked me lot of questions about my flapping, about school, how I liked to play, if I had friends, about my family. Shortly after this session I had a diagnosis of Asperger’s syndrome, now simply referred to as an Autistic Spectrum Disorder.
After the session, I remember I want back to the building a few times to be observed by some women. They had me play with toys, read aloud from books, and read emotions from faces on cards. A little later a Dutch woman called Dominica came to my house and did IQ test type things on me for some kind of autism study, I think. Sometimes people came into my school to observe me.
I am very very blessed and lucky to have been diagnosed with autism at the age of seven, as far too many AFAB autistics do not get diagnosed until adulthood. It would be irresponsible of me not to acknowledge the amount of class privilege and white privilege that contributed to me being diagnosed at seven, as well as the sheer luck of having very good and observant primary school teachers. However, there were difficulties and hardships to an early diagnosis.
At the same age that I was diagnosed with autism, my classmates were at an age where they were hearing the word “autistic” for the first time. It was not a positive word to them. It was an insult. It meant stupid, strange, other. Growing up, through later primary school and then secondary school, I would hear “You’re so fucking autistic” screeched with laughter in hallways. And I would feel sick to my stomach knowing that that word- that word that meant freak, that meant idiot, that meant unwanted- also meant ME.
I also struggled with my education. Throughout primary school and the early part of secondary school I was forever being dragged out of lessons to talk about “How to make friends” and “How to express our emotions”. One specialist even suggested that I should not ever be educated with my classmates, but sent to a corner with a chest of drawers full of activities to do by myself. Luckily, my parents shot this proposal down quickly. Still, I missed dozens of Maths, English and science lessons because school deemed it more appropriate for me to have a session on “Planning a good routine”. I believe I was in year eight when I finally put my foot down and told them that my education was far more important than these worthless sessions. And from then on I received no further support from school. If I wasn’t having support that disrupted my academic timetable then I would have no support at all, it seemed.
School overall was a difficult time for me. Especially upper school. Big changes are incredibly difficult for Autistic people, and going to upper school was a big change. In year seven I remember eating my lunch in the toilets (disgusting, I know) because I couldn’t deal with the sensory overload of the loud atrium. And, as I’ve mentioned in previous blog posts, my entire form class hated me. I hadn’t mastered social skills yet.
Plus I was horribly disorganised. Within a half term, the women at the lost properties desk knew me by name. I was forever losing homework, my pe kit, my planner, my ID card. My brain would get so scrambled. It was around this time that I decided I hated being autistic, I hated being me. So, I decided to mask. Hard.
I watched other girls carefully, to copy their mannerisms, how they spoke. I even masked when I was by myself- it never stopped. Even if I did something “autistic” when I was alone, I would judge myself and feel guilty for being “such a weirdo”. I “quit” my flapping (which is of course actually stimming, something autistics use to keep themselves calm and happy).
Of course this lead to way more meltdowns, because that is what happens when you repress your autistic traits. I would scream and cry before school each morning. I was such an anxious wreck that I started vomiting all the time, and even ended up on a drip in hospital because I couldn’t keep food down.
At this point you’re probably thinking that being autistic sounds horrible. That I must hate being autistic and wish that there was a way I could be cured. But I actually like being Autistic. Yes, meltdowns and sensory overload are horrible. But for me, Autism has blessed me too. I’m very creative, for example with my writing, thanks to having a brain that works more uniquely. I think outside the box. When I care about something I become dedicated to putting in work towards it. Plus years of masking lead to me discovering a love of acting, which in turn lead to me having a lot of fun as the president of my uni drama society. Me and my Autism are so interlinked that you cannot have one without the other. If I didn’t have autism I wouldn’t be me- overexcitable, creative, too honest me. After leaving school (which is a toxic place for anyone, not just autistics) and coming to uni, I have really started accepting myself and loving myself for who I am so much more.
For me personally, I choose to see my autism as a neutral. It is simply who I am, and brings an equal amount of positives and negatives. I understand that not every autistic person feels this way though. For some autistic people, the struggles do outweigh the blessings and that is valid. I am simply talking about my experience.
To all of the Autistic people reading this, I pray that you love yourself for who you are, no matter what the world says about autism.
Love to all.