WolfSpirit
Not a dictionary. Or a search engine
I'm not sure entirely where to post this, so I'm going to try here, and see what happens. I'm searching through some old files, looking for some suggestions for mom on general coping stuff and COVID stress in particular, and stuff. She's finally admitting she's been isolating herself and not socializing (almost at all) with her friends and stuff enough. Now she's trying to figure out how to do it safely during COVID, and also just generally realizing she might be a bit depressed as a result of isolation. ... anyways, in the process of doing this, I ran across an old letter I wrote to my family doctor, that seems to have been the turning point in getting her to understand autism (even though it wasn't really about autism at all), or at least that got her to stop trying to get me to interact more like an NT, or something. Thought maybe a mention of it might help others here.
Even though she was the one that helped me get an autism diagnosis, it was a steep learning curve for her (this was back when the more capable forms were still almost unheard of), and just when I thought she'd 'got it', she'd "relapse" in her understanding. Even a handful of years into our relationship. I now realize that a lot of the difficulty we had communicating in this sense was because of her envy of my academic ability, and how it interfered with her ability to understand my difficulties because of the societal belief that a person's skills should be at approximately the same level across the board, and if you're intelligent, you should be able to do everything equally easily.
Anyways, after one particular argument where I was complaining about not having appropriate support services in my personal life (and maybe academic too, I don't remember, though those were usually easier to come by), and about people not understanding me or my needs, and she kept telling me that I needed to do more for myself (after a lifetime of having no supports whatsoever, or even recognition of my difficulties) and that it wasn't other people's responsibility to help me, etc. I finally went home and wrote her a letter explaining (indirectly) how triggering the conversation had been, but what thoughts it caused to rampage through me head.
I started it with "do you know what I hear when you say x,y,z?" I then enumerated what I heard when she said this phrase or that phrase that she'd used. (note, I didn't blame her for saying what she said, or what I heard, I just spelled out what was going through my head when I heard each phrase). After I finished spelling it all out for her, I explained how I had tried to listen and follow the 'advice'/'commands' in my head for most of my life up to that time, but that my involvement with the disability rights movement, and some personal 'reparative relationships' had finally begun to teach me more beneficial things, like the idea that some people can be trusted, and that I might have some worth as a person the way I was, after all. I said I was just really starting to believe people who told me these things, and that I was beginning to feel there was some point to engaging with the world after all.
I then told her that I felt that when she said the things she'd said in the conversation we'd had, (and other times when she told me the things she'd said, and that I'd written in this letter) she was trying to tell me to go back to distrusting the whole world, and not expect anybody to care anything about me, and that I couldn't expect any support from anyone, ever. (Note: I didn't say she'd actually said such things, only that that's what I felt she was telling me). I explained that I thought such a belief was a bad idea, and destructive. I addressed her concern that I would 'regress', or lose skills if I had help doing them, and relied on other people besides myself to function in the world, and said that in expecting me to do everything myself, I heard her suggesting that I condone the very loss of skills she was afraid of.
I continued, saying that what she had been talking about sounded to me very much like the mind frame I had as a traumatized child, who expected everyone in my life to go out of their way to harm me or otherwise screw things up for me. I said this lead to me avoiding contact as much as possible, which only amplified my innate lack of interest in people, and comprehension of their actions. I finished telling her that now that I had learned there was a different perspective on the world (a better one) I had no desire to return to such a negative view of the world.
. As I said, we never had this argument again afterwards. I must comment that, from an outsider's, NT perspective, who wasn't familiar with autism, autistic regression, or autistic catatonia (which at the time was almost everyone), I can now understand why she would worry, and why years earlier, my speech pathologist sometimes worried. To them, it looked like getting an autism diagnosis, and getting support services lead to my losing skills, or 'giving up', or, 'becoming dependent' or whatever you want to call it. But in reality, it was just the normal consequences of incredible stresses on an autistic brain. And, I'm beginning to realize, the effects of spending most of my energy on identity development, and self-advocacy skills, and trying to create my own place in an intolerant and ignorant world. Never mind what was going towards my homework and such, since I was also in University at the time.
Even though she was the one that helped me get an autism diagnosis, it was a steep learning curve for her (this was back when the more capable forms were still almost unheard of), and just when I thought she'd 'got it', she'd "relapse" in her understanding. Even a handful of years into our relationship. I now realize that a lot of the difficulty we had communicating in this sense was because of her envy of my academic ability, and how it interfered with her ability to understand my difficulties because of the societal belief that a person's skills should be at approximately the same level across the board, and if you're intelligent, you should be able to do everything equally easily.
Anyways, after one particular argument where I was complaining about not having appropriate support services in my personal life (and maybe academic too, I don't remember, though those were usually easier to come by), and about people not understanding me or my needs, and she kept telling me that I needed to do more for myself (after a lifetime of having no supports whatsoever, or even recognition of my difficulties) and that it wasn't other people's responsibility to help me, etc. I finally went home and wrote her a letter explaining (indirectly) how triggering the conversation had been, but what thoughts it caused to rampage through me head.
I started it with "do you know what I hear when you say x,y,z?" I then enumerated what I heard when she said this phrase or that phrase that she'd used. (note, I didn't blame her for saying what she said, or what I heard, I just spelled out what was going through my head when I heard each phrase). After I finished spelling it all out for her, I explained how I had tried to listen and follow the 'advice'/'commands' in my head for most of my life up to that time, but that my involvement with the disability rights movement, and some personal 'reparative relationships' had finally begun to teach me more beneficial things, like the idea that some people can be trusted, and that I might have some worth as a person the way I was, after all. I said I was just really starting to believe people who told me these things, and that I was beginning to feel there was some point to engaging with the world after all.
I then told her that I felt that when she said the things she'd said in the conversation we'd had, (and other times when she told me the things she'd said, and that I'd written in this letter) she was trying to tell me to go back to distrusting the whole world, and not expect anybody to care anything about me, and that I couldn't expect any support from anyone, ever. (Note: I didn't say she'd actually said such things, only that that's what I felt she was telling me). I explained that I thought such a belief was a bad idea, and destructive. I addressed her concern that I would 'regress', or lose skills if I had help doing them, and relied on other people besides myself to function in the world, and said that in expecting me to do everything myself, I heard her suggesting that I condone the very loss of skills she was afraid of.
I continued, saying that what she had been talking about sounded to me very much like the mind frame I had as a traumatized child, who expected everyone in my life to go out of their way to harm me or otherwise screw things up for me. I said this lead to me avoiding contact as much as possible, which only amplified my innate lack of interest in people, and comprehension of their actions. I finished telling her that now that I had learned there was a different perspective on the world (a better one) I had no desire to return to such a negative view of the world.
. As I said, we never had this argument again afterwards. I must comment that, from an outsider's, NT perspective, who wasn't familiar with autism, autistic regression, or autistic catatonia (which at the time was almost everyone), I can now understand why she would worry, and why years earlier, my speech pathologist sometimes worried. To them, it looked like getting an autism diagnosis, and getting support services lead to my losing skills, or 'giving up', or, 'becoming dependent' or whatever you want to call it. But in reality, it was just the normal consequences of incredible stresses on an autistic brain. And, I'm beginning to realize, the effects of spending most of my energy on identity development, and self-advocacy skills, and trying to create my own place in an intolerant and ignorant world. Never mind what was going towards my homework and such, since I was also in University at the time.
