For most of my life I had thought that there was something wrong with me. That I didn’t belong. That I was different.
Then a few months ago I was diagnosed with ASD. ASD stands for autism spectrum disorder. It is not something I developed, nor did I catch it from anyone. I was born with it.
When I was given the diagnosis, the feeling I had was — total relief. it was a relief to find out that I hadn’t done anything wrong.
Autism Spectrum Disorder is a developmental condition that affects how someone thinks, feels and interacts with other people. This is who I am and who I will be for the rest of my life.
Now before I continue, let me explain something about autism. The autism spectrum is huge. Everyone on it is different and it has various levels of severity. I am on the lower end of the spectrum. But some of the things that I battle with are common to all people with ASD.
The two main issues for people like me are social communication and interaction and restricted and repetitive behaviors. People on the spectrum experience this in varying degrees, from very mild to severe – and so sometimes diagnosing it can be difficult, like it was in my case.
So how does it affect me? Well, I personally find that maintaining friendships is an enormous struggle. I love people and I love hanging out with friends. But I find myself alone on the weekends and holidays. This has pretty much been the story of my life. I’m used to it now, but it’s not something I want to be used to.
I don’t want pity and I am not blaming anyone for not wanting to make arrangements with me – because, yep, I can be quite a handful! But just so you know, I often have trouble understanding body language, facial expressions, and sometimes following a conversation. I also don’t understand the subtlety of jokes and sometimes I attempt to make a joke that is entirely out of context.
Some people on the spectrum have repetitive behaviours like banging their head or flapping their arms which most people associate with the word “autism”. I am fortunate enough not to have these behaviors.
I don’t like change. And so you will find my dinner placemat in the exact same spot every night. My routine is exactly the same every day and the slightest change throws me off completely.
Which brings me back to holidays and weekends – where I struggle to keep it together because my routine is out the window.
Emotional regulation is another aspect of ASD which I have had to work on – before I started therapy, I would blow up at the slightest thing I didn’t like. But I have now learned to control this much better – although I am still a work in progress.
My diagnosis isn’t only about me. While it affects me daily, it also affects my family and friends.
I’m sure my friends don’t want to exclude me, I know they are all good people who mean well. But because I can’t read the room properly, I often don’t know when to stop. I don’t know when to walk away and I am sure that it’s frustrating for them. Hopefully this speech will help everyone understand why I behave the way I do and maybe they can help me learn new skills in my life journey.
And then there is my family. On occasion my sister has to take a back seat because I am more needy than she is – and I feel bad that I get more of my parents time than she does. Though now she is 16, I’m sure she is grateful not to have my parents breathing down her neck!
But like other girls with ASD, I often can hold in my emotions at school – but when I get home, I tend to let it all out. My parents have to deal with the explosive meltdowns and it hasn’t always been pretty.
So, my message to you all is to be kind. Because when you meet someone, you never know the battle they might be fighting.
And please don’t judge me. I’m in good company. Bill Gates, Sir Anthony Hopkins, Jerry Seinfeld, Albert Einstein – yep, they all have ASD, and look at what they have achieved.
So yes, I am different. And I still often feel like I don’t belong. But I am still Skye with hopes and dreams like all of you. I’m not an autistic girl, I’m a girl with autism.
And I’m proud of who I am.
