It’s not easy to figure out where we are going, at least not always. Sometimes it feels like we are in the back without any effect on our path.
Before I was diagnosed with autism spectrum disorder, I tried never to really talk about myself. I had this perfectly crafted version of myself – complete with both specifically chosen flaws and skills – that I showed to other people. It was my mask and the only thing I felt saved me from the world. It didn’t, of course. It only made me suffer alone.
Being diagnosed was strange. I knew I would be diagnosed with Autism spectrum disorder. I had known for a long time what made me different. I knew the label, that is, not what it really meant to me personally.
The thing is, there is not just one way to be autistic, not just one form or expression of it in us – there are innumerable ways. Every one of us is a bit different, but also a bit alike. Just like neurotypicals are a bit different from each other, but also a bit similar.
It wasn’t like I got my diagnosis and then I was fine. Not at all.
I got my diagnosis and then the hard work started. I had to figure out who I was underneath my mask.
I used to talk a lot about Autism when I was first diagnosed. It wasn’t to remind others or because I was ashamed, it was more like I was explaining it to myself. I was figuring out what was normal and what wasn’t, I was trying to figure out who I am. It was in those moments, whenever I brought up the topic of Autism, that I understood some vital piece or information about myself.
It wasn’t, and still is, often not understood that way. People misunderstand.
Misunderstandings are an unavoidable part of life with Autism spectrum disorder. We struggle every day to be understood, but often I feel like I struggle even more to understand the world around me. It’s just impossible for me not to try and understand. Sometimes, I wish I could just not care.
It would be easier if I didn’t want to be understood or want to understand others, but whenever I try to fight it, it feels more like I’m fighting a part of what makes me human. Like, I could only live without a desire to be understood if I cut off all interaction with other people, and I could only stop trying to understand if I cut myself off from life itself.
Sure, it may sound dramatic and I’m not saying it isn’t overly dramatic, I’m only telling you how it feels to me.
Because being understood and understanding others feels to me like a path to getting to know myself better, and if I stop figuring who I am or who I want to be – then I am nothing. A zombie going through the motions of imitating life. I lived like that once and I cannot recommend it. I never want to go back to that, even though in some ways, it was simply easier. It didn’t hurt like life can do now. People didn’t hurt me either. Life was just movement, rhythm and habit.
I was numb.
Being numb also means no happiness, so don’t get too excited about the benefits of my zombie existence. Happiness is something quite wonderful, really, even if it seems awfully elusive at times.
When I got my diagnosis, I talked a lot about Autism spectrum disorder with others, whether they were family or not, it was on my mind and I talked about it. It was, and still is, very important to me.
People sometimes thought I used it as an excuse. If something happened and I reacted in a way that they didn’t expect I would mention my autism and talk about why my reactions weren’t the same for me as they were for them. I didn’t do it as an excuse, not at all.
I am not, nor was I ever, ashamed about my diagnosis. Before my diagnosis, yes, of course, because I assumed, I was broken. Never after though, because that’s when I started understanding that I wasn’t broken or wrong, only different.
I mentioned my autism because I too was learning about my diagnosis. I was discovering all these new patterns and reactions in my life had meaning, they weren’t just signs of a broken machine, they were signs of my programming. I just have a different operating system from most other people, I’m not broken. I talked about it because I was realising these things as they were happening. It was all new and wonderful and scary – like being born again and seeing everything for the first time.
I talked about it because I was experiencing myself, learning about what was normal out there in the real world and what was all me. It takes time. All I ever knew before was my mask, because I was too terrified to look beyond the fragile broken pieces of it. Now, I was starting to get to know me.
If you meet someone who talks about their diagnosis remember this. It might not be because they are sad or ashamed, it can just be because they have finally begun to understand themselves – not as failures, but as people.
We don’t know what’s normal to neurotypicals if we don’t learn, because what’s normal to them is not normal to us. The world is created and structured to fit neurotypicals, not atypicals like some of us are. It’s like we have worn this big or small suit, one that didn’t fit all, all our lives and now we get a chance to change the parts that doesn’t fit, but to do that, we need to know what doesn’t fit – how we are different.
So, I addressed it at lot. I was surprised that the neck of the shirt, if we stay with this analogy, was always too tight making it hard to breathe. Then I suddenly realise that other people don’t wear shirts with necks that are so very tight, and I address it and talk about it, to figure out if that’s normal. It makes me understand that I have every right to adjust the neck so that it fits – so that I can breathe.
I know, this might seem very abstract to many, but describing this is a lot more difficult than you might expect. Yet another reason why I talked a lot about my diagnosis at first. It’s difficult to figure out what’s normal to me and what’s normal to you.
I don’t talk as much about my diagnosis these days because I’ve learned a lot about myself these last couple of years, but I haven’t stopped.
I write about it on this blog, which helps, because no matter how much I know about myself now, I still feel like there is so much more out there, and in me, that I need to learn. I don’t really know or understand myself yet, just like I don’t understand others or the world perfectly yet. I’m in the process of learning and this blog is helping me figure things out. If not, I’d probably still be talking about with other people and sometimes I do.
My point is, it doesn’t matter when we are diagnosed, there will always be times when we need to talk about our diagnosis, about people like us or atypicals in general, or neurotypicals. We just all have to figure out what way works best for us. And if you don’t feel like you need that, I guess you are a lot luckier than I am.