For a long time – three decades, to be exact – I did not know I was autistic. I must admit, I also never really thought about autism in the sense of “what exactly” it is. There were times I did think to myself I might be autistic but disregarded it quickly because I thought that was only due to my logical thinking (as I said, I did not properly know what autism was). I do remember also wanting to dismiss it because while I didn’t know exactly what it was, I did “know” it was something bad. Something that you don’t want to have or be. Something wrong with you.
Sadly, I am noticing that this is still very much a prevailing perception of autism in Slovenia. There is no proper support for autistic teens and adults. Practically the only association that does offer some support is run by neurotypical people and uses the puzzle piece symbol proudly (I included a link to a great article explaining why the puzzle piece is problematic). On its website, it includes testimonials by autistic people, saying things like,
My ASD affects approximately 35% of my life. Most people think I’m quirky and wouldn’t guess I’m on the spectrum. That is why I like to refer to myself as a “neurotypical aspie”.
This statement makes my heart ache. I hope many people reading this can already understand why it is so painful and harmful but let me unpack it a little bit.
The mere notion of assigning percentages to how much “ASD affects one’s life” is ridiculous. It presents ASD as an inconvenient disease that sometimes shows its effects and sometimes doesn’t. That is not true. Furthermore, it is disrespectful, ableist, and downright offensive. You see, the more I learn about autism, the more I learn about myself, and the more I think about it, the clearer it becomes. Autism is an inherent part of me, of who I am, of my very essence. It is interwoven into my every thought, my every action, my every feeling. It is ME. That is why I do not “have” autism. I AM autistic. And if you listen to many people within our community, they feel the same way. (That is why we prefer to be referred to as “autistic” instead of “a person with autism”.)
Not that this is the same thing, but it might help some people understand. Imagine a person that is colourblind in the sense that they only see black and white. Now, they are colourblind all the time, right? But to other people and society, this only become obvious when this person needs to tell a colour of something, for example if they want to learn to drive a car or match colours of their clothes. So one might say, “being colourblind affects approximately 35% of my life”. That wouldn’t be true though. The colourblindness affects them every single time they look at anything. They are always colourblind, not only when society decides that this is a nuisance. Like I said, the example is not perfect, but I hope my point has come across.
Secondly, it shows that this person feels as though being perceived as autistic would be a bad thing and they even go so far as to call themselves neurotypical. Which breaks my heart. While I don’t know this person, I bet they are wonderful. And I wish there was someone who could tell them that they don’t have to hide or suppress parts of their personality just to be perceived as neurotypical (or, what I bet is in their head, “normal”).
I do want to stress that my disappointment is by all means not directed towards the person who made this statement but rather, it lies in the people around them who made them feel autism is not something to be proud of. That it would be bad to fully embrace their autistic self and actually feel good in their own skin. If I could speak to this person, I would show them many wonderful accounts on Instagram (or any social media of their choice) because I do believe every autistic person should be accepted and loved for who they are – not despite who they are.
But I did choose this statement because it serves as a great example of how autistic people feel in Slovenia. It indirectly shows the attitude of the professional system, the state, and society. Basically, autism is viewed as a disorder, a disturbance, an inconvenient anomaly, and the goal of professionals should be to get autistic people to behave as “neurotypically” as possible. Absolutely no effort is made to educate and encourage the neurotypical majority to be more accepting.
The thing is, forcing autistic people to suppress or hide their autistic traits is extremely detrimental to our mental and physical health. I am speaking from first-hand experience, you can find countless other examples online, and, if listening to people and taking their word for it is not your strong suit, there have also been studies to show this. I am looking forward to sharing more about these in the future posts.
So yes, when I first self-diagnosed and later got an official diagnosis, I felt a lot of regret over my “lost years”, over how different my life might have been if I had been diagnosed sooner, if someone had noticed sooner, if I had gotten the appropriate support I needed. Sooner. But even a quick research of the position of autistic people in Slovenia reveals that that would never actually have happened. Now, I realise that not only is it not that bad that I wasn’t diagnosed sooner, it might actually be for the best. As the strong(er) emotions over the realisation that I am autistic are calming down, I am finding myself quite happy and serene with myself. For the first time in a long time.
(Might have something to do with the fact I allow myself to stim more which has had an astounding effect on my anxiety levels. Might have something to do with knowing who I am and that it’s okay to be me.)
There is a lot of progress to be made – here and everywhere – when it comes to autism and neurodivergency in general. But I am very happy and grateful to live in an era when so many different people from all over the world have the ability to connect through the internet. I am so grateful to my online community that let me know there is nothing wrong with me, au contraire, that I can and should embrace my autistic self as I am and be proud, not ashamed, of how my brain works. That means accepting ALL my traits, not just the ones that our neurotypical society marks as acceptable.
So this goes out to all my online friends and all autism advocates I have had the pleasure of encountering online: THANK YOU. ♥