When spaces are not accessible to autistic people, there’s a barrier to our activism.
I love being in online spaces. I’m able to say what I want to say, for the most part, and people will either agree or disagree, or ask for clarification. It’s pretty simple. Sometimes people won’t listen, but that’s going to happen regardless.
Transitioning from being an online self-advocate, to one “in real life” (online activism is still real activism for all the reasons I’ll list here), was and still is hard.
Being a self-advocate in person means often being in situations either not designed for you, or not accessible to you. It means anxiety, uncertainty, and concern about whether your autistic self will be completely “acceptable” in social spaces. Is this a function where I need to mask? Is this a “formal” event? Is this a neurotypical formal event? Will I look “bad” if I don’t mask? I guess I’ll mask. (It usually ends up with me masking due to anxiety of “what if’s”).
Being a self-advocate in person means your communication needs aren’t going to be offered, but assumed: the default will be speaking, in-person. This is inherently inaccessible to autistic people. People will only ask if you want to meet in person as the only option. Other times, they will say “we can meet in person or.. however else you would like.” So, that means I have to suggest the other option.
Should I suggest another option? Did they really mean that or were they just trying to be nice? What if they don’t like the format I ask for? What format would I even like? Would Skyping, email, or direct message inconvenience them because that is not their default? Is that going to change the meeting or interview in a negative way?
Only once have I truly seen someone make two options equivalent, and actually provided a second option themselves.
The very people who hold the narrative to our stories also automatically assume that we have neurotypical access needs – that we would “speak up” if we needed something (and they may or may not be perfectly happy to oblige, but you never know until you ask). But it’s not so easy for us to speak up when we are told most of our lives that our needs are not important, that they do not even exist (“it’s not loud in here!”), and that neurotypicals don’t need to cater to us. Even people who genuinely want to learn often don’t understand accessibility – giving all of the interview questions ahead of time (not all but one), asking or providing a quiet space, and offering different interview formats up front, rather than as an “if needed.”
I will never be able to say all of what I want to say, or all of what I meant to say, in an in-person interview. That’s a fact of my life. This also goes for spontaneous conversations with strangers. The idea that an interview from me, while navigating neurotypical spaces and formats, provides me the same platform as a neurotypical person in the same space, is in all honesty, quite ludicrous.
There’s a secondary problem to this as well. When well-intentioned people don’t live up to the change autistic people want to see, what are our options? When people ask for information or want input, and they are very far away from our viewpoint, when will they decide that our needs or self-advocacy is too much? When does that tension break, where we are left again with the assumption that autistic people are simply angry with little cause, or that they are “bad at theory of mind”?
I was told by a non-autistic person that “if an autistic person needs an accommodation, they’ll ask.” I insisted they wouldn’t, that they may not even know they are stressed by the fluorescent lights, for example, that they may be worried about repercussions of their employer. Yet somehow the conversation moved on (unsurprisingly to me), in our in-person meeting. I had plenty more things to say to that person, and meant to email them my thoughts afterwards, but never did. Since it was an in-person meeting, I automatically agreed with many things they said even when I didn’t really agree, or when I would’ve commented, but the conversation moved on. I wanted to please people. After all, it was the first time I was meeting someone about doing some good and helping autistic people. Yet I did not feel truly heard throughout much of it. The topics were instigated by the other person, unsurprisingly, because it was an in-person meeting.
If people are trying to change the narrative and listen to us, but they don’t do it the right way, do we let it slide? Because at least then, they changed something? It is hard to know how accepting non-autistic people will be, and I sometimes wonder if it’s worth pushing the boundary of their comfort, or if by doing so, they will decide to do nothing.
Creating change is hard. Creating change as an autistic in a neurotypical space is even harder.
How far is too far? How much critique is too much?
For example, I have a certain pet peeve about saying “her/he/their autism.” I want to say it matters. But I also have this fear that I’m simply being “fussy” or “picky.” That if I speak up about something as “minor” as this, that my narrative may be gone one day. That there won’t be anyone else to speak to, to make change. And this is a relatively irrational fear for me, as I know they want to do good, want to embrace neurodiversity and help autistic people. It’s just so hard to speak up when you know someone might tear you down, especially when you’ve been told implicitly for most of your life that your autistic access needs don’t matter. Your spicy food problem? Just picky. Your noise sensitivity? It’s not loud! Self-doubt is inevitable when you have foregone your own experiences and needs for other’s comforts for so long.
I worry that neurotypical people will use incorrect assumptions about autistic people to tear down our own narratives and add to the self-doubt of self-advocates. That our needs don’t matter – that if you can type on twitter, you can’t be autistic. That if you can write a blog post, you can’t be autistic. That if you can advocate for your autistic needs in neurotypical spaces, you can’t be autistic.
What To Do About It:
If you are working with autistic people, autistic access needs must be pre-emptive:
Give us options, instead of “meet in person,” instead of “here’s your sensory-inaccessible space,” instead of assuming we will do 150% of the work, and push neurotypical boundaries just to get what we need to exist in a space, to do our jobs, or to provide an interview.
How To Be A Proactive Ally:
- Ask if they would like to meet through Skype, voice chat, email, or direct message, as well as in-person.
- Find a space away from fluorescent lights. Ask the person if fluorescent lights bother them before asking to meet, and if so, find a spot with natural lighting and no fluorescent lights.
- Make sure to find a room that is quiet or at least far away from hallways/other people. Ask the person if the room is okay upon meeting, and let them know that you know of other places to go if certain noises are bothering them in the space (for example, ticking clocks in doctor’s office nearly drive me into a shutdown sometimes, even though they’re not super loud). Also letting them know ahead of time that you are okay with moving spaces if it is too loud, but will try your best to find a quiet space, is helpful for relieving anxiety from uncertainty about sensory stimuli (leading to potential sensory pain).
- Let them know that wearing headphones/earplugs/sunglasses is completely fine and that you understand autistic people can have sensory sensitivities. Further, letting them know it’s also okay to stim and not make eye contact in the meeting also would be helpful. Eye contact can be really overwhelming, especially with strangers. Many of us worry that people will assume we are not paying attention because that is what has happened before. This leads to people acting rude around us and/or infantilizing us by assuming we’re not paying attention. Knowing this is okay will let them know they don’t have to mask.
- Let them know that you are completely fine with them bringing something written or typed up for you to read, in case they don’t remember what to say in an in-person meeting, or prefer writing/typing to speaking during the meeting, as it can be easier to get thoughts out this way.
This is what accessibility looks like to autistic people. This is what acceptance means.
It really boils down to one thing:
Let us be autistic.