We don’t need anyone to speak for us, we need people to LISTEN.
Originally posted on Artfully Autistic, I very much appreciate claps (you can do 50!)
and follows over @ Medium!
There are many requests for allyship right now, and while it can be overwhelming to learn about disadvantaged communities while also navigating a global pandemic — it’s also crucial, and really quite exciting.
We’ve finally gathered the courage to share and listen to each other’s stories on a bigger level, expressing ourselves and working to understand what it’s like to live in circumstances unfamiliar to our own, and it truly does have the power to change everything.
This article comes from the Autistic community, of which I am a proud member.
It’s hard to be Autistic in a Neurotypical world, as things literally are made for a different neurotype, a different kind of brain. Additionally, instead of in the place of desperately needed information — like how to work with us, communicate more effectively, and why we do the things we do — we’ve got hoards of misinformation, stereotypes, and presumptions.
Though there’s a big organization claiming to speak for us, they mostly just tell the public not to bully Autistic children, which does nothing for the millions of Autistic adults trying to create a life against daunting odds. We need people to understand what it’s actually like to be of Autistic neurology, what it’s like to be in a body run via Autistic wiring.
In an effort to bridge the knowledge gap, I went to a trusted source for all things Autistic: the online Autistic community (specifically private support groups), and they/we had a whole lot to say.
This issue is, of course, triggering to many of us, so please try to understand that some of the answers will reflect that emotional upset.
Thank you for listening. 🙏
What We Need You to Know
- “Autistic people are the experts on autism. Stop speaking over us.”
- “I wish folx knew what an act of courage and vulnerability sharing one’s diagnosis can be, and that chuckling or otherwise invalidating their diagnosis is never ok. Normalize trusting that people know themselves better than anyone else could.”
- “We don’t grow out of it.”
- “That our way of being, interacting, communicating, experiencing the world isn’t less than.”
- “It isn’t just on us to adapt to the norm to be accepted, to be seen and heard. It is just plain ableist to expect that of us. It is as much on you, the neurotypicals, the society at large to make the effort to understand us, as much as you feel that it is on us to understand you.”
- “I hate when people say ‘oh everyone is a little autistic’ no not every one is a ‘little autistic’. You either are or you aren’t. You can have a trait that autistic people have but no, you aren’t a little autistic.” — Siera Komarek
- “That we aren’t broken and don’t want to be ‘cured’” — Nina Stepalovitch
- “They don’t call it a disability because I can function normally. There really are things I simply can’t do. Like any issue, it becomes a disorder when it becomes a problem that interferes with your daily life.” — Hayley Hackett
- “Believe us when we say something about our experience? So many times I’ve said something ranging from ‘that’s too loud’ to even ‘I have a hard time understanding TV shows cause I’m faceblind and lose track of the characters’ and it seems like anything I ever say that doesn’t line up with their NT experience gets questioned and invalidated. Just accept that not everyone perceives stuff the same way you do.”
- “I’m not a child. I don’t need to be treated like one.”
- “I don’t miss most of what you might be thinking or feeling, it’s just that any given person could react differently to the same situation on different days depending on so many things, that I don’t want to presume to be able to read your mind.” — Brooke Northrop
- “I wish parents of autistic kids would realise that the best way to address behaviour is to focus on the needs their kids are struggling to express. Many of the autistic ‘problem behaviours’ that parents get concerned about are actually just ways autistic people act when extremely upset. (Often it’s the way ALL PEOPLE act when they’re upset.)
We just get triggered by different things. so you’re sitting there trying to figure out what puzzle piece will make us whole or whatever — when actually we just need you to turn off the extraction fan.” — Leyla
- “YT autism is not the default. Non YT Autistics need MORE support not less because the medical and societal establishment thinks YT and male and cis is standard when it just isn’t.”
- “Diagnosis is only one way to discover that you’re autistic, you don’t become autistic the moment a doctor tells you you are, and people who have been autistic their whole lives know better about autism than the doctors ‘diagnosing’ it.” — Basil Pepperomia
- “If someone tells you ‘This is really hard for me to cope with’ just believe them. Try to imagine something that is really hard for you to cope with — not how easy YOU would find it. […] If you can’t understand someone’s sensory struggles, social struggles, or processing issues that’s okay, but you need to accept that you don’t understand instead of assuming it doesn’t make sense or doesn’t exist.”
- “Masking unwanted autistic traits is painful, draining, literally bad for our brains, and it’s scientifically associated with autistic burnout (extreme problematic traits) — which is associated with suicidal behavior. We can’t just ‘act normal’ for you all the time.”
- “ABA is abuse. We do not need therapy, we need a more hospitable environment. Our sensory needs and cognitive processes are completely different.”
- “Communicate directly. Stop using so much nuance and relying on others to understand something you’re not effectively communicating. Understand that our brains work differently, this is not something that can be treated or cured as it’s not an illness or injury.”
- “Hoping someone will ‘take the hint’ Is unclear and ineffective communication.” — Tabitha Anne Shaw
- “I’m so tired of people not doing communication.” — Siera Komare
- “Not everyone can communicate verbally all the time.”
- “Autistic brains are a natural, beautiful part of human diversity. It’s not some tragedy or disease. I’m not upset that I’m autistic. When I ‘come out’ to you you don’t have to make me feel better about it by saying how ‘actually it’s fine’ and Greta Thunberg is autistic too. Yeah I already know.” — Leyla
- “Stop using the fucking R word, ever, for any reason.”
- “A lot of cringe culture is just autistic traits. [In regard to NT acceptance] words never meet with actions.”
- “Sometimes the music/tv is painfully loud and sometimes I can’t hear it very well, even if it’s at the same setting as before.”
- “The main thing I wish people understood is that autistic adults with low-support needs like myself still occasionally need help, and that doesn’t make us less capable. Sometimes I need a little more patience than a neurotypical person, or my autism just needs to be taken into consideration a bit.
For example, not scheduling me as one of two servers on a holiday weekend with no other support staff. A neurotypical can compartmentalize that stress. I had a terrible meltdown and then shutdown. But I can handle any other very busy day just fine, just that specific scenario was one I shouldn’t have been in.” — McKala Hanes, 23, she/they
- “You might see us stim, but ‘looking Autistic’ or ‘seeming Autistic’ isn’t a thing.”
- “I want them to understand that we need different ways to work. Just because you can work 40 hours a week and do well doesn’t mean I can do the same. It’s really tiring and we need better accommodations to work so we can actually survive.” — Gabby she/her/hers
- “Unless it’s actually hurting someone or disrupting something, don’t immediately scold someone you’re conversing with for being ‘too loud’ volume-wise. And if it is necessary, try asking before shaming. I have so many issues now with talking because I know I don’t always have awareness of my volume when I go off about something I’m interested in and that could be made so much easier if people were just kind.” — Tabitha Anne Shaw
- “Some days are better days than others. Support needs vary depending on the day and circumstances. Just because I look put together and am fairly articulate, doesn’t mean I can feed myself or keep the house clean.”
- “Eye contact and honesty are not related. Eye contact and listening are not related. Eye contact and taking something seriously are not related.”