Thing I wrote.

You cannot talk to autistic people the way you talk to someone who is normal, she said to me. To me. How could she say that to me. 

I guess I should have taken it as a compliment. Apparently this person, who even had a degree in psychology, had no clue about her audience. Had no clue about me. Yet, it only made me feel incredibly hurt. Touched to the core. This is why I never tell, this is why I hide. This is why I don’t trust people. 

I taught myself to tell people. Coming out, as I call it. For some that may sound like a very bad comparison. For me, that’s exactly what it is. It wasn’t the first time, and it won’t be the last that people will treat me differently once they know. Will assume I don’t get jokes, will talk to me as if I’m insane. Will call me ‘handicapped’. None of these things are true. I taught myself to tell, partly to educate people, partly to stop feeling apologetic for not always behaving according to ‘the norm’, whatever that may be. Truth be told, the only person I should feel apologetic towards is myself, for not being accepting, for constantly fighting that little demon within that other people call autism. That thing I can’t change, the thing I refuse to let control my life. 

When I started my academic career I was done with all the psychologists, social workers, psychiatrists. I was spat out by the system, told that for me there was no pill because my depression and anxiety stemmed from my autism, and for autism we have nothing. Yes, therapy, but that rarely works, and for me it didn’t so they had nothing more to offer. Gee thanks. So I started with a carte blanche. Hadn’t told anyone, hidden myself away, trying to act ‘normal’. I was afraid if people knew, I wouldn’t get a job. That this stupid DSM-5 diagnosis would ruin my chances. After all, who would want to hire someone who is ‘limited’ like me. 

Except, I couldn’t hide anymore, it was simply too exhausting. I cannot explain how neural fatigue feels, but for me it was real. I just had to tell my boss, had to explain that sometimes my brain crashes, and some things can be extra difficult for me. But also that I will never accept this and work 10x harder to overcome those limitations. I told him how exhausting it is. He barely even blinked. He knew, he said, when he hired me. And he thought I could do it. He never treats me differently, but he always allows me to take a step back. Because he knows, if I take a step back today, I’ll be up and running twice as fast tomorrow. So I taught myself to tell people. Because somewhere amongst all the negativity, the people that matter will understand. And if they don’t, they are not worth your energy. 

I know I’m not the only one who experiences this. There are many people like me. But the stigma is massive. It’s scary. People already freak out by the idea a vaccine can cause autism, because your child having autism must be so much worse than dying from measles. The logic is infuriating, but mostly hurtful. I don’t wish this upon anyone, but surely it can’t be worse than death,  now can it? I’m alive, I don’t want to die, so where’s the logic in that? 

In the end it’s about exploiting your strengths, let them outshine your weaknesses. Once people see you, they usually don’t care about the labels anymore. And if they do, you shouldn’t be caring about them. Everyone has strengths, the power lies in finding them and believing in them. I am lucky, I am doing a PhD, working long days and I manage. I manage because my strength is my efficiency. This allows me to take that step back when I need it. And that’s why I don’t break. That’s why you would want someone like me in your team. And that’s why you should never judge someone based on their labels. Because the things that aren’t labeled might  positively surprise you.

by Ellis Nelissen

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1 Comment

  1. Kim Thieme
    March 8, 2021 / 9:51 pm

    Hi Ellis,

    I don’t really know what to say to you … except that I think you are an incredibly brave woman. You’re right … I hope you can now find some peace of mind by being yourself for who you really are. We need more people like you: people who are their real selves. thank you for sharing your story ….. thank you

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