A common theme of my youth was that I was worth less if I didn't have friends and a social life. Another prominent idea was that no matter what, if people didn't like me, it was my fault and my responsibility to change that. Having an opinion on what I'd like or not like to do or expressing discomfort with someone or something was being "bossy" or "too demanding" or "high maintenance", and none of these things are ok to be.
So I was this kid who was told that social approval defined my worth, and who was told that if I in any way challenged what my social peers decided to do I was screwing that up. Basically the message I got, both directly and indirectly, was that people were doing me a favor by tolerating my presence at all, so I should shut the hell up and be grateful and go along with whatever.
Ask me if I think my worth is determined by social approval and I'll say hell no, because it isn't and never was. If people don't like me is it my fault? Well, maybe, but that's their loss now isn't it?
But some of that toxic stuff internalized. I know in my head that people aren't doing me a favor hanging out with me, but that doesn't mean I really know it. I rarely feel comfortable asking for a plan change, and while I call out ableism frequently, I don't feel allowed to be as intense about it as I should if it's consistent and consistently minimized. If someone's behavior is unacceptable to me, I'm more likely to remove myself then request or demand a change, even if I know and like everyone else there. They may be my friends, but I "know" that I'm not allowed to be uncomfortable and ask to have that discomfort remedied, because I "know" they only put up with me as charity or something.
That is some messed up toxic shit, and I learned it from people who supposedly wanted the best for me. I'm an adult and I've been demanding to be seen as a whole, worthwhile, unbroken human being for nearly half my life, yet I still can't totally shake this crap. I know it's bullshit. I know I have the same right to express my needs in a social setting as everyone else.
But that knowing doesn't suck the poison out, now does it?
SAME HERE. I'm getting better at rejecting the shit I was taught (thanks for the lessons), but it's still my default. I *know* that asking for what I need and what I want is ok, that I have a right to, but I still worry about it. I say what I think and then worry if it's ok that I spoke up. And the shit I got when I was young wasn't nearly as bad as the shit you got. I'm glad I'm not the only one who still deals with this.
ReplyDeleteI'm going to come hug you now.
It won't make you feel any better but NT children get taught the exact same toxic lessons.
ReplyDeleteSpeakingupanyway, I'd love to know what the lessons you were referring to were. I live in fear of doing the same to my son who was diagnosed a little under a year ago. I'm painfully aware of the fine line I need to tread between helping him learn and not stifling him or creating inner conflict within him.
ReplyDeleteEither way, I'm really sorry you guys experience this. That must really suck. I think I've had a couple of situations where maybe I felt something similar for a brief time, but it must be exhausting feeling that way constantly. It might not make you feel better, but the younger generations with autism will find the trail you guys are blazing a lot easier to tread because the path will be beaten clear...
Good luck and for what it's worth, I bet it really would be okay to voice your discomfort and have it remedied. :)
I was just introduced to this blog yesterday thanks to a link from your friend speakingupanyway. Whom I also like, and was inspired to write a blog post to post on my friend's blog cause I should also speak up.
ReplyDeleteAnyway, found your blog last night and found it so amazing I read the whole of it last night and this morning. Keep writing please. You've taught me more in the past 4 hours than I've known about epilepsy and neurodiversity over the past ~15 years of working with disabled. And I'm gonna apologize now - I used to work in ABA (a few months only) and I used to have a wheelchair (I fix them) that had light-up wheels. Gonna recommend the person who bought the chair remove those ASAP.
@MarsupialMama: Sorry for the long delay, I suck at checking back for comments on this blog.
ReplyDeleteA lot of the bad lessons I learned were byproducts of my evangelical Christian upbringing. The storyline of everyone being sinners, saved by grace (something we don't deserve)translated in my head to "You're broken, and you totally deserve to suffer forever for being broken, but luckily for you someone rescued you. You can't fix yourself, you can't rescue yourself, and you'll always do bad things." I was taught that selfishness was a bad thing, and that I was selfish, until I believed that asking for what I wanted or what I needed was unacceptable. I learned that if you have to choose between possibly hurting someone's feelings by saying no to something you don't want, or hurting yourself by saying yes, you should always say yes. I learned that I was not important.
The thing is, my parents are amazing, caring people. I've told them what I learned, and it broke their hearts. I honestly believe that the only reason they taught me these things, and sent me to schools that taught these things and a church that taught me these things, is because of their faith. (I need to blog about this...) It's one of the major problems I have with religion, even progressive religion - the narrative of broken people saved because the higher power felt like it is so toxic to children, especially children who are bullied, or children who are part of a marginalized group, or any other child who gets told by other ways that they are less than.
As usual, thank you Kassiane for stating this so well.
ReplyDeleteBTW, as an adult, I am still being taught these things. There's a self-appointed expert in my county who charges adults huge sums of money to teach them the minutiae of how to make everyone else comfortable at their own expense. Several of her clients recommended to me how helpful she is at teaching them to get along in the NT world... then mentioned how much time they spent in theray to stop hating themselves.