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To the People Trying to Change Me After My Autism Diagnosis

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You’ve known me for a very long time. However, you have only learned recently that I am autistic. I understand this diagnosis isn’t easy for any of you to accept or understand yourselves. But do you ever wonder how easy it is for me to accept and understand myself in a world where everyone is expecting me to be someone I’m not?

Over the past 10 years, I’ve been accepted, quirks and all. You’ve seen my socially awkward side, not really talking much or trying to avoid going to a group outing altogether. You’ve seen my ability to sit down and solve problems quickly, my ability to work and just keep going like a machine, and even do a lot of extra work (often on behalf of you) without thinking twice about it. You’ve seen my lows, you’ve seen me cry or overreact to something that appears to be trivial to you. You’ve seen my extreme highs where I’m playful and make people laugh. You’ve accepted every single one of these things over the past few years as who I am and I was allowed to be that way.

What you didn’t see, however, was how tired I used to get after just a few hours of having to socialize with you. How much effort goes in to bringing myself to stand up, walk across the room and start a conversation with someone I don’t particularly have anything in common with — a conversation that has no purpose other than to say hi — and then not be able to think of anything else to say so I just feel awkward until one of us walks away. You didn’t see how upset I got after things got awkward. You don’t feel the stomach-turning pain when I have to prolong eye contact with someone so I don’t make them feel uncomfortable or as though I’m being rude. You don’t see how I notice every single detail in everything I see, and how much my brain has to process just moving into one area.

For example, when you look out to the car park, you see parked cars and the smoking shelter, right? Here’s what I see: black tarmac, white lines, red Audi, black BMW, gold Subaru, white Fiesta (and so on), every single letter on every license plate on each car (I have rhymes in my head to memorize all of them), I see a grey curved structure with misty Perspex “windows” which has two red litter bins/ash trays on either side of it, people standing around smoking/vaping, a big green hill with benches and lots of rabbits and small infant trees with different-colored leaves all over them, and a faded gravel path leading to a big circular area at the side of the building with the company’s logo fading away on it. I like this area — it’s my favorite area because I can vape there and be alone processing everything that’s going on around me. It’s my safe place.

Should I continue? I’m not actually done — that’s just what I take in on a five-minute vape break.

I see and hear so much more than you can imagine. You must think having super-vision and super-hearing is awesome right? Think again. Do you think it’s easy taking all this in for 24 hours a day, seven days a week? It’s not something that comes and goes. My brain is processing to this level of detail all the time.

I actually started to feel very ill as a result of my head working this way, as I didn’t understand myself. So, I saw a specialist, underwent some tests, and just less than six months ago, I was diagnosed with autism.

Since my diagnosis, I haven’t changed or become someone different. I just have a reason for the way I feel and react a lot of the time, and I find comfort in knowing I’m different.

I do find it saddening, however, how everyone else appears to be trying to change me “back.”

“Right, we need to get you up and talking to people, let’s get you over this social thing.”

Here’s news for you: I won’t get over it. I have no issues socializing when I need or have to. If there is absolutely no purpose to having a conversation with someone, I won’t have it. I’m at work to work, and if I need to talk to someone about work, or if I’m genuinely interested in starting a conversation, I will do so. But I can’t make unnecessary conversation to try and cure something which can’t be cured.

“You’re taking it too personally, you’re overreacting.”

Take a walk in my shoes and come back and say the same thing to me. Go on, try it.

“Why are you so clingy to that person and not balancing your attention across everyone else?”

Maybe because I have a common interest with that person, or because they’ve asked me to help or support them for a while. Maybe I’ve known them for a long time and have history with them. I’m sorry I don’t have enough love to share across the whole world. But yes, I get attached to certain people and I can safely say there are three people outside of my immediate family who I am attached to, consider my friends and trust with my life.

“You’re not approachable. You zone out all the time.”

That’s funny, because you still approach me and I respond accordingly, help you, and give you whatever you need. I zone out when I’m concentrating — when I concentrate on something it has my full attention. Which is kinda the reason my attention to detail is so high and why any favors I do for you are completed to a high standard and in good time.

“You’re too direct.”

I’m sorry I can be monotone at times or sharp. I’m the same at home. I’ve been working for 20-odd years to try and improve that. I’m pretty sure I’m not the only one out there like this, though.

There are a lot more examples I could give, but the one question I have is why has it taken a diagnosis for you to realize you don’t like who I am or how I am, and why do you feel as though you are “helping” me by trying to change me to become how “everyone else” behaves? You’ve loved me and accepted me up to now, you didn’t want to change me before, you didn’t even notice me sitting in my corner working away quite happily and getting involved when it was required and nothing more. But now that you know I have a social disorder, all of a sudden everyone feels insulted that I tell them I don’t need their “help” to change?

When did it become so wrong to be unique? I really wish you could accept me today the same way you accepted me 12 months ago.

I can’t be cured.

I am who I am.

I don’t need help.

I actually haven’t changed.

I’m different, and not less.

Carrie

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: December 28, 2015
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