I recently found out I am autistic. It took 25 years. 25 years of feeling, more or less, like an alien. Not in a bad way, just in a ‘I feel different and I don’t know why’ way. So far, I’ve only told very few people. Apparently, the next sensible step was to write a blog post about it. So, here goes nothing.
My journey of realising that I am autistic started in the most unlikely of places: TikTok. I was scrolling through while waiting for something, and I stumbled upon a video that talked about how autism presents in women. I was intrigued so I kept watching. Half-way through the video, there were alarm bells in my head. “Oh my god, I do that!” “Wow, that’s exactly how I feel”. And then, I started reading more and more about it. I booked an appointment with a therapist and went through the assessment and here we are now.
Very soon after I realised, I started wondering: why on earth did this take 25 years? Well, I suppose I didn’t even consider it because the only portrayals of autism I had been exposed to were in the media – and let’s just say that they’re not the most reliable source. I didn’t act like Sheldon or the Good Doctor, I couldn’t see myself in the stereotypical ‘5-year-old boys with autism’ tropes. Turns out, I’m not a 5-year-old boy, and autism presents different in women. So why didn’t anybody else notice? And if they did, why didn’t anybody else say anything?
Through more research I found that many women are not diagnosed until much later in life, and very often our symptoms and behaviours are overlooked. Or, we are taught to mask. That basically refers to the development of camouflaging strategies used to fit in. You learn how to prop your face so that you look interested so your conversation partner doesn’t think that you’re bored. You mimic someone’s body language, or pre-prepare phrases or topics to bring up in conversation, and so on and so forth. But there’s something important to know about this: masking is not for us, masking is for you. It is so that you feel comfortable and that we are accepted. And it’s exhausting.
For most of my life I didn’t know why social interactions exhausted me. I can’t describe what this kind of fatigue feels like, but I imagine that’s how phones running on 1% battery feel. Every day, coming home from school or from work, I felt physically and emotionally drained. So much so that I needed at least an hour of complete silence to recalibrate and allow my brain to rest. But the exhaustion never really went away until I learned to set boundaries for myself and not push myself to ‘perform’ non-stop. I gave myself time to take the mask off and just be me.
I’m slowly learning to identify the things that make me uncomfortable – the heat, smells, textures, loud sounds. And, more importantly, I’m learning to say no to things that I don’t want to do and call out people’s reaction when they become rude or insensitive. Still, there is so much stigma.
But enough negativity. My journey to a diagnosis hasn’t been bad. Not at all. I never felt frustrated or sad about being autistic. Quite the opposite. Everything made so much sense.
Very often the narrative around autism revolved around deficits – communication deficits, sensory issues, unusual speech patterns etc. For my own sake, I make a conscious effort to focus on the cool things my brain does instead. I can remember pretty much everything that happens to me. I can think in my sleep (a very convenient trick for an academic, might I add). I’m very efficient. I can see patterns where other people can’t. I never forget a rhythm.
I’m in no way an expert on autism, nor do I speak for any other person. But this is my experience. This is me. And, label or not, I like me.
by Danai Petropoulou Ionescu