I’m part of the autistic community. That’s right, autistic. You’ve been told repeatedly that it should be “person with autism”, and people can refer to themselves however they like, but you should understand why as a group we might disagree with this phrasing. It implies that autism can be separated from us. Or that it is like a disease. But that’s wrong. There is no separating it from us, it’s part of us, unremovable. It is, scientifically, how our brains are wired. Every aspect and every unique personality trait, it comes from the same place as autism. Therefore, without it we wouldn’t be us. That might be unfavorable news to some. Because we see you when you say things such as “I love my son, but hate his autism” But that’s not possible. Simply, if you removed autism from him, you would end up with a completely different person. Everything you love about him, from how passionate he is, to his sense of humor, it all comes back to him being autistic. Remove it, and he is not the son you know. The son you claim to love. If he makes you frustrated, remember what you love about him, because they do, and always will come together.
A more serious phrase that affects us is that we “suffer from autism” because we don’t. Every complaint or example of suffering, does not stem from autism by itself. There may be a comorbid disorder(s), such as epilepsy (a seizure disorder), but saying “Autism is bad because of epilepsy” doesn’t make sense does it? The rest of complaints comes from how we are treated by others, bullied, belittled, neglected, and yes, killed.
The kids are bullying you? Well, they wouldn’t if you stopped acting so weird. It’s almost as if people have agreed that victim blaming is wrong until it comes to be unashamedly autistic (and/or disabled, but that’s another topic) in public.
“Well, my sister can’t go to a restaurant because of all the noise” You shoot back. As if there’s no possible way to make the experience easier without just throwing your hands up and getting rid of who she is. There is accommodation you can provide, internet resources available to you written by people who deal with the same thing. People that will still tell you they’re autistic, and proud.
But most of us (I might even argue all) have dealt with self-hatred, with alarming statistics on depression and suicide. Following along with what the world has told us and screaming “Why can’t I be normal!” If I was normal I would have friends. If I was normal people would respect me. If I was normal I might be loved. If I was normal people would treat me like a human. And no matter how much someone would deny contributing to this narrative, the same person will turn around and go “Retards, right?”
The self-hatred never goes away. Not really. Even if you’ve accepted yourself, even if you’re an advocate, you feel like a hypocrite. Because while you preach self-acceptance, you’ll be laying in bed and remember what the world really thinks, remember how much work still needs to be done, and as much as you try to put it out of your mind it whispers in your head, why can't you be normal?
But what we don’t really want to be normal, and forcing us to behave that way will do more harm than good in the long run. We want to be ourselves, our normal. We want to exist without fear and shame. Because even if we successfully camouflage ourselves, those two things are the only reason we do.
It’s actually quite odd how people can talk about autism, be it on TV, the internet, or in the classroom, as if no one that sees or hears this can possibly be autistic themselves. So it safe to talk about how we should get rid of them (not it, remember, autism can’t be separated from the person). And that’s terrifying. I was afraid to take a psych class in college because I feared for my mental health if they started talking about how bad autism is, talk about how we are a burden to our family, but never ever really talk about us. Because we’re not real people. People say you shouldn’t use autism as an insult because so and so has a relative that’s autistic. Well, I say autism shouldn’t be used as an insult because we’re here, we exist, and we’re hurt by it.
Sometimes it’s just the little everyday things that can really hurt, because we already know in the grand scheme of things we’re unwanted, every talk of a cure (i.e. almost every autism based charity) is a cut that joins the other scars, which just don’t want to be reminded.
Now bring on the functioning labels. That I’m too high-functioning to talk so generally, after all, I’m writing an article! All the low-functioning people want to be cured! Except, they don’t. Remember, I’m part of the autistic community, this isn’t just a catchall phrase, we communicate with each other on a regular basis, on different websites in different ways. you have no idea the so many ways computers can be accommodated anyone’s needs. So many autistics, ones that may even need constant care, say the same thing (and even have their own blogs you can find), summed up; “I’m a person, and I deserve respect”.
Functioning labels don’t have much use for us anyway. There’s no real definition either, the easiest way to explain it is a quote from user autisticliving on Medium.com
“Autistic people who speak up about the issues concerning them are labelled “high-functioning” to invalidate what they have to say as being inaccurate and irrelevant for other autistic people and so-called “low-functioning” autistic people are being silenced and spoken over because they are written off as too ‘low-functioning’ to have nuanced, relevant opinions or even communicate at all.”
This article could go on and on, this is just a tiny slice of issues we as autistics face, and fight. Afterall, loss of welfare is going to affect us and other disabled people the most. We just want to be part of the conversation. There’s so much we have to say.