Written in January 2023
I read a great post from ANW last night (here, for context) which reminded me of this piece I wrote last year. I'd wanted to put this piece in reply to someone's post in an autism group, but when I read it back it seemed like a really toxic piece of advice, so I didn't. It was, however, still fresh enough in my mind to be recalled when I read about Jude's mic drop moment – even the professionals who are supposed to help us have an ingrained mindset that the autistic kids/people are meant to struggle.
When I was diagnosed I was told that I will feel exhausted at the end of every day, that I'm “meant” to feel drained by masking and dealing with people, and that people won't understand me way of thinking even though I am the logical/right one in most situations.
This sentiment was part of the explanation given to me and although it was meant from a place of validating my experience and not a directive, it really is my/our lived experience that autistic people are going to struggle, that we're meant to and that it's part of our life. I wasn't being told that I should be exhausted and struggling, and misunderstood, but that this was what I could expect from life. It was said to validate my experience and to help me adjust my expectations to a reasonable place, but Jude and Chris' insights are showing me that I shouldn't adjust my expectations – none of us should lower our expectations and standards and accept that we'll struggle.
While the autistic community continues to accept this struggle, we'll only struggle more to gain acceptance. It's not going to be a easy fix because the support services, and many members of the community, hold the view that we are going to struggle and we must find ways to cope with that immediate problem. I can't deny that this is a sensible way to proceed on an individual level, because we all just need to keep surviving until we can thrive, and we need to deal with the daily stressors and problems we face. We haven't all got the capacity to go that extra bit further and refuse to struggle, to insist that society changes to accept us the way we are.
So I'm not going to feel bad when I find myself in this familiar mindset of “I am supposed to struggle” because part of that validates my experience and that's really important. We can't ignore that our lived experience tells us we are going to struggle.
I am going to try and catch that thinking, and shift it into a more positive, proactive mindset of refusing to struggle. I, and every member of the autistic community, should be able to live without the constant burden that being autistic in wider society brings. It's just going to be a bit of a struggle to get us all there.
Original piece of writing: https://www.actuallyautisticadult.com/what-do-you-care-what-other-people-think s
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