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  • Writer's pictureAshlea McKay

Quirk Monster #18B: 4 years on from my autism diagnosis

A close up of a brick wall painted in pinks, yellows, reds, blues and purples
A close up of a brick wall painted in pinks, yellows, reds, blues and purples

Today marks the 4th anniversary of my autism diagnosis.

I slept in until noon because I couldn’t bring myself to get out of bed this morning. 

About a week ago I sat down to write about how I felt about this year’s anniversary. I wrote a long article — 2094 words to be exact. I poured everything I’ve been feeling for some time out onto the page. Frustration. Anger. Disappointment. Elation. Misery. Confusion. Regret. Peacefulness. Self-love. Admiration and more. 

I’m going to keep the full version of that article to myself for now because the one thing it all boils down to is this:

We do not yet live in a world where I am safe to be my authentic autistic self without consequences that negatively impact upon my wellbeing and quality of life.  

Four years on, it still isn’t possible for me to outright tell someone that I’m autistic and know that they will respect and understand me and my differences — or at least try to. I’m not asking for everyone to be an instant autism expert. Just be kind, listen, learn and try to put those learnings into action.

Broadly speaking, the world does not yet view autism in the same positive light that I do. And yes, there are pockets of supportive and inclusive people but they can only do so much — autistic acceptance is nowhere near wide sweeping enough to stop negatively impacting upon my daily life. 

The evening of April 26, 2016 was cold and I remember stumbling out into the car park after that appointment feeling simultaneously gut wrenchingly sickened and tremendously giddy with excitement. 

That feeling is probably the best way to describe post diagnosis life: a 50/50 split of extreme highs and extreme lows. 

My autism diagnosis is both the best and worst thing that ever happened to me.

My whole life changed that night. Some of those changes were amazingly positive and some were unimaginably bad. Watching the street lights blur past the window on the drive home, I had absolutely no idea what kind of world I had taken a one-way trip into. 

As happy as I was, it wasn’t long before I learned that being openly and proudly autistic in a neurotypical world came with a price. It turns out being autistic has similar consequences to everyone thinking you’re a ‘bad person’. 

Pre diagnosis, I was a ‘horrible’ person. Post diagnosis, I’m still a horrible person because I have an invisible disability that makes other people unhappy and uncomfortable. I don’t fit into a nice neat stereotype and I have the nerve to not only tell anyone wanting to ‘fix’ me to f**k off but also to love myself just the way I am. Yes, I love my autism and I don’t view myself as broken because of it. Total monster right here. 

Everyday life is still riddled with hurdles for me caused by other people’s unchecked bad behaviour and flat out ignorance. Society still clings to outdated stereotypes, tragedy narratives, functioning labels and a shit ton of autism related stigma. People who are nice and inclusively-minded are not immune to these things either.

Ableism is still a socially acceptable pastime when directed towards autistic people and I’ve learned that people generally have no idea how unacceptable this is. 

In four years, I’ve reached a point where I am completely comfortable with who I am and know my worth, but the rest of the world has barely taken a step forward. 

That’s a scary thought when I consider how much of my life exists in other people’s hands that I have little to no control over. I cannot control other people’s actions and attitudes. I can only control my own and my future in other people’s hands is a terrifying prospect. 

There’s a lower chance of me being treated fairly and a much higher chance of exploitation, double standards, gaslighting, marginalisation, tone policing, bullying and discrimination. As an autistic person, I feel constantly ignored, overlooked, erased and misrepresented. 

I sought that diagnosis on a quest to find out who I am. 

While I found something absolutely wonderful, it has been four f***ing years and I’m still not safe to be that person in front of other people without paying an enormous price. My journey of self discovery has at times made me feel more disconnected from other people than I did before my diagnosis. 

My autism is beautiful and doesn’t make me broken, but constantly feeling like someone is holding me down underwater breaks me. 

It takes a lot of work to exist and even have a chance at thriving in a world that wasn’t designed for me or people like me and I’m really tired. I’m exhausted. I’ve just had enough.

The wall of systematic ableism that stands between me and what I could become is starting to feel insurmountable. I’ve tried pulling it apart one brick at a time but can never seem to make a hole big enough to crawl through to what I can absolutely see on the other side. Forget glass ceilings, I have a stone wall with foundations entrenched so deep I fear it may never topple. 

All I want is to be accepted. I want to be safe to just be myself without penalty and be treated equally and with respect. 

Is that really too much to ask?

Author’s note

This short article is a lived experience example shared from my life to help you understand a little bit more about what it’s like to be autistic. I am just one autistic person in a really big world. No two of us are exactly alike. I can only speak for myself and to my own experiences. If you want to know what other autistic people think — and you should — look them up, talk to them and read their work too. We all have our own voices and this is only mine. This article is part of a mini content series I publish to LinkedIn when I can. You can view the other articles in this series via my LinkedIn profile. 



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