Reflections of a Late Diagnosed Autistic

Two Years On

In the early days, it felt as if someone had pulled the rug from under me, and everything I thought I knew about myself, everything I thought I understood about the world, collapsed. Even though I had been pretty sure for years before receiving my official diagnosis, getting that confirmation felt huge. I was relieved, and at the same time, totally overwhelmed.

I felt so vulnerable. Like an open wound. I was angry, and grieving for my younger self. Memories that I’d long since blocked out were flooding my mind, and I was starting to really see things from a whole new perspective. I was reliving the past but with this confirmation that I was autistic. Not shy, or quirky. Not crazy, weird, slow, or lazy. Autistic.

My usual coping skills didn’t seem to be working for me anymore. Then came the skill regression, which seems to be very common in late diagnosed neurodivergent people. Even my speech was affected. I’d find myself stumbling over my words, or going mute, just as I did as a child. I became very anxious in social situations, and would cry at the drop of a hat. It was as if the volume and intensity was turned up on everything, even more than before. Sounds were louder, touch was unbearable, smells were intolerable. And I had that same feeling in my tummy as I did as a child. That uneasy dread, I want to hide from the world feeling. All I wanted to do was retreat, and hibernate.

Photo by Kinga Howard on Unsplash

I also found myself questioning whether I was even autistic at all. What if I was making it up? What if I was just pretending to be autistic? Whatever that means. What if people don’t believe me? What if they treat me differently? I’d spent most of my life up to this point, whether consciously or unconsciously, working really hard to hide the parts of myself that made me seem different, divergent. I thought to myself “Wouldn’t it be easier at this point to just keep pretending? Keep masking?”. But I just couldn’t. The weight of it was too much. It was as though I’d been given the key to a locked door within myself, and once I’d walked through it, the door just disappeared behind me. There was no turning back. Only forward.

As time went on, and I’d had more time to process things, I started to notice things that I never really paid much attention to before. Ways I decorated my own space with other people in mind. Ways I compromised on my own wellbeing, placing the needs of others before my own. Times I said yes, when I really wanted to say no. Times I stayed silent, when I really had something to say. Times I wore myself down trying to keep up, pushing myself needlessly instead of going at my own pace. Times of conflict where I didn’t stand up for myself or set boundaries because I’d convinced myself that I was always automatically in the wrong. And I would become so overwhelmed trying to process what the other person was saying, that I couldn’t properly gather together my own thoughts until hours, sometimes days (or in some cases even years!) later. I would feel so confused and embarrassed, as if my silence was an admission of guilt. When in reality, I had communication differences which meant verbally hashing things out was a sure fire way to end up with a huge misunderstanding. I reckon this is why so many autistic people tend to overexplain themselves. It’s as if we’re trying to express ourselves in a language we’re not completely fluent in, to paraphrase a quote from autistic comedian Fern Brady.

I started to rearrange things with myself in mind for a change. I started to question what was really important to me, how I really felt about things. I began to realise that despite what I’d spent my life believing, I hadn’t been doing it wrong. I’d been going against the grain, contrary to my very nature. Building my life around what I thought it should look like, and ending up burnt out, anxious and depressed, versus rearranging my life in a way that makes me feel regulated and happy. A low demand lifestyle. Because why not? Who was I burning myself out for? For a watered down version of myself that didn’t really exist anymore? For the approval and acceptance of others?

And it’s not as if I don’t still struggle sometimes, of course I do. I still get burnt out, I still overextend myself and have days where I feel like I’m disappearing into a giant abyss. But the difference is that while before, I would keep asking myself ‘why, why do I keep ending up back here?! What is wrong with me?’, now I’ve made it a practice to create enough space for myself to sit with it. To give myself a little more grace.

I want to leave you with one of my favourite quotes by Elizabeth Gilbert.

“The most peaceful people that I know, and the most wise people that I know, are the ones who have created enough internal space to be able to allow all the parts of themselves to coexist despite the contradictions. So they have room for their creativity, they also have room for their fear. They have room for their dignity, they also have room for their shame. They have room for the parts of themselves that are glorious, and divine, and wonderful, and they have room for the parts of themselves that are petty, and jealous, and ridiculous. Right? Like they create this big huge auditorium of a landscape inside themselves. They don’t kick any parts out. Because guess what? You can’t!” - Elizabeth Gilbert