From
HERE:
"Or imagine this:
You grew up with a strong interest in computers, which was all you ever thought about. You did somewhat well in school, if unevenly, but you were ostracized by your peers because you could never figure out the social game. Even the other "geeks" made fun of you, and in school you were bullied constantly.
The teachers encouraged the bullying as a way to toughen you up and prepare you for society. You cried a lot over this, and teachers, kids, and even your parents called you a baby and a sissy. You could never figure out what you were doing wrong, although you are sure it is
something because people keep telling you to shape up. They act like it's obvious what to do. You never know what to do and you're always out of step. You're also often in sensory overload at things that don't bother other people, and you get blamed for overreacting or being too sensitive.
You develop your computer interest into a hobby of computer programming. As you get older, you get jobs in that field, although you struggle with workplace politics and dealing socially with your coworkers. You come home exhausted and lonely. You have no friends. You've never been on a date. And you desperately want friends. You don't know what it's like to be valued, you wish that you were like everyone else because you don't see any way to be you and be happy.
You find out about autism, and at long last end up with an adult diagnosis of Asperger's syndrome. You are referred to the local parent support group — there is nothing like that for
actual autistic people in your area, so they all get referred to the parent groups. Many of the parents there are floored to meet an adult who is like their children. You in turn are floored that they consider you such a success. You had always thought of your life as a failure at everything.
You start to get invitations to speak, not only at that group, but at your autism society. People ask you to tell the story of your life. You tell it, over and over again. You get asked a lot of questions that seem strange or even demeaning. Everyone wants to know how you were potty-trained, whether you've ever had sex, that kind of thing. When you answer them, though, people are nice to you. Not even your own parents have ever been this nice to you.
This becomes your only real social outlet. You give talks, people give you praise. They tell you you've overcome your Asperger's very well, that you're amazing, that you're an inspiration to parents of autistic children everywhere. You tell them whatever they want to know about you. You learn to dissect your life for autistic "symptoms": You describe yourself almost as if you are a case history rather than a real live human being. You become adept at explaining social awkwardness, Theory Of Mind, your monotone voice, motor clumsiness, and perseveration. You occasionally throw in some of your own touches to keep it individual — a few jokes about neurotypicals here and there — but even those, everyone knows you're not really serious, and they're toned down.
You learn never to be threatening, never to say anything too far out of line, no matter what you think. It's subtle, but your thinking slowly alters so that it goes along with what parents will find the least threatening. You don't want to risk losing them. You're not even aware of how much your thinking has changed.
You learn to never hold too much of an opinion on anything. If you do, you learn individual-speak: "This is
my story," "I only have mild Asperger's, so what was abusive to me might not be abuse for someone more severely autistic," "We are all different and I am the only person I can talk about when I say this." When you hear talk about cattle prods being used on autistic children, you think, "We are all different. I wouldn't like being zapped with a cattle prod, but who's to say it wouldn't be
necessary for someone else?" You learn to attribute such abuse to autism itself, declaring it a sad fact of autism that some people are so autistic that their caregivers have no choice but to torture, segregate, or kill them. Any opinion you may still have gets diluted in the language of impairment and individualism.
But then one day you really need help with something. Workplace discrimination, the inaccessibility of a class you're required to take, or something else like that. And so you turn to your "friends" at the parent groups. Instead of giving you help, they shower you with praise. They tell you you're excellent and a role model for Asperger kids everywhere. They tell you that you should be proud of yourself, that they are proud of you for getting so far. You like the praise, but it suddenly feels... hollow.
You don't want to give up your social outlet, though. So even as you have an increasing awareness that you're being used, and being demeaned, you can't stop. The loneliness is still there, and comes back in full force sometimes, but you figure that it would be even worse being alone. You turn off your emotions and trot out your rehearsed spiels, not even sure you believe them anymore.
Instead of recognition of what is happening, a "concerned" parent refers you to a psychiatrist who starts treating you for depression. You start incorporating how depressing the Asperger existence is into your talks more and more. You use the same clinical language that is used about you. You also start endorsing various causes, barely noticing how you're becoming tokenized, as "This autistic person believes this is good, so all the others shouldn't care." Everyone still tells you how great you are for doing what you do, but you don't feel good about it anymore. You wonder if anyone sees you at all. You wonder who you are.
You don't see a way out, because you've never experienced any social validation except when it is in an exploitative and demeaning context. You sometimes switch between different parent groups, but they all end up being about the same. Your problems don't get solved — unless some parent who found you especially insightful has the "charity" to decide to help you with something — and you continue to get used. Sometimes you really believe them, and sometimes you don't. You've never experienced praise for being who you are, only praise for things that don't seem praiseworthy to you anymore. But that's deep down inside and on the surface you continue, day after day, the drudgery of exploitation in exchange for a false sense of friendship.
This is not about pity or the tragedy of disability. This is about systemic injustice. This happens every day."
A_A (fighting in the trenches for the right to be neurodiverse, every day of my life)
Asperger's syndrome
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