Transcriber: Jasmyn Tognere Reviewer: Leonardo Silva “The only thing that matters, Ellie, is that you be yourself. But just not like that. ” “Be kind and be caring, but don’t be so clingy.
” “Be sweet and be lovable, but don’t be so intense about it. ” “Be open and be honest, but stop being so sensitive. ” “Speak up about how you’re feeling, but don’t be such a killjoy.
” “Put on a brave face, but there’s no need to be such a bitch about it. ” “Put your own needs first, but only once everyone else’s are taken care of. ” “Be friendly and make conversation, but can we please move on to something else?
We’re all fed up of hearing about that. ” “Give them eye contact when you’re speaking to them. But stop staring, would you?
That’s so rude. ” And the list of contradictory rules that made no sense whatsoever went on and on and on. It felt as though everybody else, when they were born, were given a handbook, some kind of rulebook that told them exactly how to be themselves without being too much or not enough, without being too loud or too quiet, and without being too straight-faced or too sensitive.
I, however, never got a copy. I’d always known that I was different. I knew that I was different at the age of three when the nursery teachers would try to encourage me to make friends with other children, but I was not interested.
I was much more interested in spending every day sitting on the same chair, on the same table, doing the same activity of painting by numbers in my own little world. I knew I was different at the age of seven, when I would lie awake for hours on end in my groovy, chick-themed bedroom and tell my mum repeatedly that I just wish my brain would shut up so I could get some sleep. I knew I was different at the age of ten, when it seemed as though all the other children in my class’ favorite time of the day was playtime, whereas my highlight of the day was beating the school’s Times Tables record, which would still be one of my proudest achievements to this day had my little brother Louis not gone on to beat it two years later.
I knew that I was different at the age of 11, when I moved up to secondary school and it felt as though everybody else was forming solid friendship groups, whereas I was receiving anonymous online hate messages about how annoying and intense I was. I knew that I was different at the age of 13 when I started having what I was told were panic attacks and I was given a time-out card so that I could take myself out of lessons when things got a bit too much. I knew that was different at the age of 17, when everybody else in my year group at school was accepting offers to go off to study at university.
I, however, had to decline my offers and drop out of school because I was overwhelmed, tearful, anxious and debilitated by the impending change. And I knew that I was different all the way through my early 20s, when I just didn’t seem to be able to keep up with being an adult, and I was constantly questioning whether everybody else around me felt like they were pretending to know how to be a grown up too. I’ve always whizzed through life at 100 miles an hour - both internally, in my racing thoughts, and externally, as I looked for something that would satisfy and stimulate me in whatever place I could find it.
I’ve always felt as though I was in my own little bubble somehow, and I’ve never quite fit in with any of the friendship groups around me. And because of that, I very quickly learned that being myself, for me, contrary to popular opinion, wasn’t actually the right thing to do at all. But here’s the catch.
Although I know so inherently that I was different, and although I’d known this for 24 years of my life, I had never been given any explanation as to what was different about me. I knew I felt as though I couldn’t get any of those contradictory rules right. I knew that being myself never ended well for me, but I was never given any title, I was never told anything was special about me or unusual about me.
And as far as the adults in my life were concerned, I was just a gifted and talented child with a sprinkle of anxiety as I’d grown up into a “not quite reaching that potential” grown-up. My differences were never different enough or, should I say, inconvenient enough to be given any explanation. So despite 24 years of repeated trips to my GP saying that I was having these panic attacks and I didn’t know what was going on, of repeated conversations with my parents about not being able to fit in with any sort of friendship group and repeated Google searches about what could possibly be so wrong with me, I was never given any explanation or any answer.
This left my self-worth crumbling. If, as far as everybody else is concerned, you’re fine or normal, but no matter how hard you try, you just can’t do things, achieve things, or interact with others in the same way that everybody else can, then it’s inevitable that, eventually, you’re going to start to think that you’re broken or damaged, or just generally a bit of a rubbish person. I had dropped out of high school.
I had never been able to hold down a job for more than a year. I'd never really had a friendship group that lasted any amount of time, and I seemed to irk anybody that spent any considerable amount of time around me. I had tried every type of therapy that had been recommended to me.
I had tried every different type of antidepressant that they thought might work for me, and I’d read every self-help book that I could get my hands on. But no matter what I did and no matter how hard I tried, I just didn't seem to be able to get myself right. I was very much convinced that life for me was going to be a case of surviving rather than thriving.
I’d learned that being myself was the worst thing that I could possibly do, until, all of a sudden, in the summer of my 24th year, everything changed. I had spent 24 years asking myself questions like: “What is so wrong with me? ” “Why am I so weird?
” “Am I really a nice person? Because I think I am, but nobody else seems to be able to see it. ” “Am I really as horrible as they say that I am?
” “Why do I find things so difficult to understand? ” “How does everybody else seem to know what to say and how to act? ” “Why am I so lazy?
” “Why does everybody leave me? ” “Why do I just always feel so much more incompetent than everyone else? ” “Am I actually a terrible person?
” “Why can’t I just do things? ” “Why does nobody seem to understand what I’m saying, even though I feel like I’m explaining myself so clearly? ” “Why can I not keep up with adult life?
” “Why am I so sensitive and so dramatic? ” “What did I miss from that conversation that everybody else seemed to take away? ” “Are they laughing at me or are they laughing with me?
” “Why can’t I just relax? ” “Will I ever make any friends? ” These are all individual and separate questions, none of which I’d ever really considered might be intertwined or linked somehow.
And then suddenly, after a big portion of luck and after a challenging and lengthy diagnostic process, I was given the answer to all of these questions all at once. I was diagnosed with both autism and ADHD at the age of 24. And I am not alone in my late realization of being autistic.
Studies have suggested that only 1 in 20 autistic women are diagnosed in childhood. So that’s only 1 in 20 that grow up with any awareness that they are actually disabled. That’s only 1 in 20 who have any hope of getting the support that they so desperately need and deserve.
That’s only 1 in 20 who have the knowledge and understanding about how their brain works to be able to both be themselves and look after themselves. I’ve spoken about my diagnosis rather a lot over the last 18 months, and I often refer to it as my light-bulb moment. It really felt like in every single interaction up to that point, I’d been roaming around in a dark room, with no light to guide the way, no understanding of what was going on and no answers to all of these hundreds of questions I’d constantly been asking myself.
Then when I got my diagnosis, it felt as though somebody had walked into that room, switched on the light and allowed me to see what’d been going on the whole time. Don’t get me wrong, that doesn’t mean it was straightforward to deal with or tidy to deal with, once the light was switched on. There was a whole pile of trauma that had been there that I’d never even been aware of, that needed to be processed and worked through.
But at least I knew what I was dealing with and I could begin to start the process. It was, for me, a paradigm shift, a new lens through which to see the world. And it was the first time that I realized that maybe being myself wasn’t an okay thing to do.
The theme of today’s event is “Be true to who you are,” and getting my autism diagnosis was an invitation to do exactly that. Up until that point, I’d spent an awful lot of time pretending, never really being myself, but instead, mimicking the people around me and showing them the person that I thought they wanted me to be. And studies have shown that 89% of autistic women mask, and also that women mask in more places and for longer periods of time than men.
That’s a lot of time and a lot of people who aren’t truly getting the chance to be themselves. Autistic women, girls, and people marginalized for their gender know that they are different long before they get a diagnosis that affirms that. They know that they don’t fit in.
They know that they're ostracized and that they struggle socially. They know that they’re always so much more tired than everybody else. They know they can’t seem to translate the sensations that they feel in their body into how they actually feel emotionally.
They know that they always seem to misunderstand what other people are saying and that they’re so often misunderstood themselves. They know that they’re different. The only difference is that they don’t have any answer as to why.
When I got my diagnosis, I saw a quote that summed up how I felt perfectly. It said that getting a late diagnosis of autism is a lot like spending your whole life thinking that you’re a really rubbish Windows PC. You’re surrounded by a network of Windows PC’s, and you just can’t seem to get the programs to work for you.
And then suddenly one day, somebody says, “Have you ever considered that you might just be a Mac? ” You can now see that there was nothing wrong with you as a Mac. You were in fact a perfectly good Mac.
You had just been trying to run programs that weren’t designed for your operating system, which obviously wasn’t going to work for you. But now, with this new insight, you could see that you were never broken. You were just running programs that physically weren’t designed for your operating system.
You can see that you were never damaged. You just weren’t able to process the coding that you needed to in the same way that other people could or other computers could. And you could see that you were never a bad computer or a bad person.
You just didn’t have enough information to build up an accurate picture of yourself. Getting my autism diagnosis at the age of 24 was the beginning of unlearning all of these negative things I’d constantly heard about myself, both from the people around me and from the voice inside my head. It was the first time that I was able to see that being myself was actually an okay thing to do.
I could learn to forgive myself for being different. I could see that I was never a bitch. I just communicate in a much more concise and monotonous way than most people.
I could see that I was never selfish. I just operate and process things in a different way to how other people do, so I can struggle to see it from their point of view. I could see that I was never dramatic.
I can just physically hear and sense things in a much more intense way than other people can. I could see that I was never too much, importantly. I am just an honest, upfront and excitable human being that experiences life at 100%.
I could see that I was never damaged. I am disabled. I was never broken.
I am just different. And I was never a bad person. I am just hugely misunderstood.
And that is why getting my autism diagnosis was the best thing that ever ever happened to me, and why we must ensure that other autistic women, girls and people marginalized for their gender, who have previously slipped through the net, are given the opportunity to get those answers as well. Getting an autism diagnosis, however late in life it might come, is an invitation to finally be yourself. And I can't think of an invitation that I'd like to receive more.
Thank you.
