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some autism advocacy really comes across as: “everyone should be able to unmask and show their true selves! but not if your autism presents in a way that makes the community look bad”

and on one level, I get that. I really do. when you’ve lived your whole life with a stigmatised disorder, it makes sense that your first instinct is going to be to try to separate yourself from the stigma. and it makes sense that your advocacy work would then focus on disproving certain aspects of the stigma.

but autism advocacy is useless if it leaves behind the most vulnerable members of our community. some of us have traits that look a lot like the stigmatised and stereotyped idea of autism that people have in their heads.

destigmatising autism shouldn’t be about saying that those people don’t exist. it’s about saying that we’re still human beings who deserve to be treated with love and respect, the same as any other human being. it’s about allowing a broad range of voices to be heard in autism spaces.

and it’s about making people more comfortable to be outwardly autistic if they want to, regardless of what that means, or what that looks like.

You know one of the shittiest parts of chronic pain? 

Sympathy has an expiration date. 

If you’re hurting because you broke your leg, people can sympathize with you, because there’s an end-date. Eventually your leg will heal and you’ll be okay again. People will coo and coddle and bring you chocolates and sign your cast because they know that’s emotional labor that they will only have to perform temporarily. 

But if you have a chronic condition that causes you daily pain, after awhile, people get annoyed with having to deal with you. They ask you what’s wrong, and when you reply with the same thing that was wrong last week, or the week before, or the month before, you eventually get an incredulous, “Still?” 

Or maybe they’re not that overt. Maybe instead they go, “Oh, just that. Okay.” As if today’s pain should somehow be fine for them to ignore because it’s nothing new. No need to worry: it’s just the same old same old. 

Let me tell you: Pain never gets easy to handle. It’s not like people with chronic pain develop an immunity to it, or that we stop feeling it. Sure, some of us get better at ignoring it, or better at living around it, but honestly? Most of us just get better at hiding it, because we get tired of feeling like an emotional burden to everyone around us.

But that doesn’t mean that we’re not hurting, and it sort of sucks that long-term pain, in addition to all the other fun things it entails, also eventually comes with a revoked right to be sympathized with, or even just treated like something other than a whiny attention-grabbing faker (or worse: a drug-seeker).

Chronic pain is real. And it sucks. And one of the worst parts about it is knowing it’s never going to end. 

It would just be cool if people could try understand that, I guess.

can i ask what would be an appropriate reaction?  because i imagine that the sort of “coo and coddle the person” sympathy reaction that an acute illness or injury gets would get really annoying and frankly infantilizing if people reacted like that to your everyday life, but that does seem to be the instinctive response to “person is in pain!! pain bad!! how help??”  what would be a good way of expressing sympathy without treating you like an invalid?

for that matter, what is the polite social protocol if you have a friend whose chronic pain makes them too tired to hang out? i don’t want to make them feel bad about it by pestering them all the time with “hey you want to hang out?” when the answer is always no, but neither do i want to just… stop inviting a friend to hang out?  because they’re chronically ill?  that would be shitty.

is it better to continue to extend the offer, or does that feel like you’re being pressured to pretend like you’re not sick?  is there an agreed-on protocol for this sort of thing, or is it different for everyone?

I would think it’s probably different for everyone, but if it were me, maybe find out if there’s a way your friend can hang out that doesn’t hurt them? Like…a few years ago I had family visiting from NYC and I was in the middle of a massive flare–couldn’t even get out of bed, right? So I thought I wasn’t even going to get to see them. 

But they instead came to my place, brought carry-out, and just…hung out with me. I got to stay lying down on the couch because they told me in no uncertain terms that I was not playing host, here, they were visiting ME. We chatted for a bit, watched a movie I think, then they left. And it wasn’t quite the same as if I’d gotten to go to the big family fish fry or the dinners out, sure, but at least I got to see them, and they made it happen on my terms. 

Maybe see if there is a way you and your friend can hang out so they don’t feel over-taxed? Sometimes just being in the presence of a friend with no demands or expectations can feel wonderful. 

As for how to respond…that also probably varies a bit, but my preference is for someone to offer me sympathy in an, “Oh, dang, I’m sorry, that sucks,” followed up with an offer to be of any potential assistance. LIke, “Let me know if you need me to get anything for you” or “let me know if there’s any way I can help you out.” It’s not infantilizing to recognize that someone might need your help, or to offer sympathies without being over-the-top about it, I think. 

unpopular opinion but I love it when people write essays for fun on the internet. I don’t think it’s cringe if you’re being polite and coherent and making your own post instead of making unwanted additions to other people’s posts. why say something in a 7 word meme format sentence, faking disaffection and chillness, when you could flesh it out in 7 paragraphs of sincere and substantial nuance. not just for seriousness but for fun concepts, is what i have in mind. for talking about a story or character. for talking about life. talking about anything. this is a wordy person safe zone

[TRANSCRIPT:

Paige: Hi, I’m Paige and I’m Autistic

Person 2: You are not autistic

Paige: Well, you don’t know who I am at all, so how can you even make that judgement?

Person 2: You’re nothing like my son, who’s 5 years old and a boy and autistic.

Paige: That’s funny because I’m actually a 20 year old woman, so of course I’m nothing like your 5 year old son.

Person 2: You don’t look autistic.

Paige: What does autism look like?

Person 2: uh it looks like my 5 year old autistic son.

Paige: Did you know every person who’s autistic is different, like any other human? And that I’m especially going to be different from a 5 year old boy?

Person 2: Yes but there are some things that are the same.

Paige: This is true, and this is why I’m diagnosed with Autism Spectrum Disorder.

Person 2: But you don’t show it well.

Paige: That’s because this is a 60 second TikTok.... That is scripted. And I am a 20 year old woman, I’m not having a meltdown 24/7.

Paige: I’m not showing you what I’m like at my lowest because I have clients and I don’t know you nor do I trust you and if I don’t fit what you think autism is, that’s not my fault nor my problem nor do I need to change to fit them. You need to change what you think autism looks like.

/END TRANSCRIPT]

I’m allowed to get up and leave the room. I’m allowed to ask you to speak quieter. I am allowed to cover my ears, especially if I have asked you to speak softer and you have no listened. I’m allowed to get up and walk away without saying goodbye. Without having to explain why I need to leave. I’m allowed to lock myself in my room, to put head phones on, to not give a response if you tell me to stay, or follow me to ask what is wrong.

I’m allowed to set my boundaries. To deal with overload in whatever way I need to. To be angry and upset if people interfere with me trying to deal with overload. And I’m allowed to be nonverbal for as long as need be, without feeling guilty or ashamed.

being gnc goes so far beyond your appearance. being gnc is having pronouns and hobbies and aspirations that dont line up with ur gender. being gnc is refusing to use common or easy labels. being gnc is loving in a way people dont want you to love. being gnc is taking back things people have tried to steal from you. being gnc is embracing everything they say isnt for you.