Accommodations are a funny thing for autistics. Not funny ha-ha, but funny odd, weird, and inconvenient.
When you’re a kid, accommodations mean help; help in school, help in social life. And few, if any, people resent giving a cute little kid help when they need it. But when you’re an adult, accommodations, at least for me, at least the majority of time, simply mean keeping my mouth shut.
I didn’t grow up with accommodations. I learned very early on to stay quiet, to not disturb people. New Englanders have a long tradition of being ornery and independent. I was taught that asking for help was shameful, that making a fuss was shameful, that in order to get people to respect me, I needed to shut up, show up, and smile.
But I’m autistic, and so that didn’t really go so well.
I cannot tell you the number of hours I spent alone in the car or in the house as a kid, because I couldn’t handle the sensory experience that the rest of my family was participating in. Of course, we didn’t call it that – we called it ‘because I was being a brat’ or ‘didn’t want to participate’. My body would, quite literally, break down and react badly to situations beyond my control. It took a quarter-century for me to be able to put a name – Asperger’s syndrome – on what was happening to me. I suspect that it may take near as long for me to fully accept my diagnosis, to stop seeing accommodations as shameful, and to let myself receive help without feeling, once again, like I’m a spoiled, bratty kid.
I’m an adult. And as such, I largely determine my own schedule and take care of my own needs. However, I’ve come to realize that too often, I simply turn down an invitation to something that I want to go to, rather than trying to find a way to accommodate myself and participate. I live in utter dread of people thinking that I’m a burden, that I’m inconvenient, that I’m a thoughtless person. Time and again people, people that I love, people that I trusted, have told me that I only ever think of myself, and just when I start to make a breakthrough in therapy or dare to have a tiny bit of self-esteem, someone will come along and put me quite firmly back in my place, reminding me once again that no, I don’t deserve to be included, and I never have been.
In the face of this fear, I say yes. I say yes to things even when I’d rather say no. I say yes, I understand, yes, I knew what was going on, even when I really don’t. I say yes, this is no bother and yes, I’m fine. I say yes, I push down my own disability and act neuro-typical and always, always, always, I end up paying for it for days, in tears and exhaustion, in OCD and PTSD flare ups that leave me sluggish and prickly.
But how do you request accommodations when much of the time, you don’t even know what those mean? How do you request help when you don’t feel that you deserve it?
The other night, I met a friend for a drink. When I suggested we meet up, I told her to pick the place, as I didn’t know the neighborhood well. I assumed that she’d pick a coffee shop or somewhere similar. Instead, she chose a bar in the fanciest hotel I’ve ever been in, (and I should note here that despite my being on the wrong side of thirty I can count the times I’ve been in an actual bar on one hand.) It would have been fine, except for – oh, yeah – the reggae band playing to one side. And the freezing wind coming in off a nearby river. And the fact that I don’t drink alcohol and I knew, without looking at it, that the menu would have nothing on it that I’d actually eat.
So I had a granola bar on my walk over and I sipped at tepid tap water and, don’t get me wrong, I enjoyed myself. My friend and I had a wonderful, marvelous, enlightening conversation. She is someone who is so easy to be with that you can just let all your pretenses go. She also happens to have an autistic daughter, herself, and asked me numerous times if the setting was okay, if the noise level was too high, if I was okay.
And each time I said yes. I thought briefly about saying no, but then I noticed that my friend already had her drink, that she knew the people at this bar, it was a regular haunt of hers, and I would die a thousand deaths before I would inconvenience someone, so I said of course. I said I’m fine. And then we hugged and said goodbye, and I took the subway to the end of the line, found my bus, got on it, walked the three blocks home and collapsed. I was that exhausted. I had crackers and milk for dinner, took a couple of ibuprofen and fell asleep for eleven hours, because no matter how many times my mind insisted I was fine, the reggae music had hurt my bones, had damaged my sensory system to the point where I needed time to recover from the experience.
Then the next night, I had tickets to a show with friends. This was a rare treat for me and I planned to enjoy myself, but somehow, that didn’t happen. The person seated in front of me was wearing heavy cologne, and I didn’t want to ‘look weird’ by changing seats. I lasted fifteen minutes, not hearing the music, only smelling the soap-musk-floral scent, before fleeing to an empty row in the back. Now I could hear the music, and it was very, very good, but I was already paying for it with a splitting headache and a sore throat that lingered for two days. I also, by separating myself from the friends I was sitting with, ensured that I couldn’t ask them what was going on and so was unable to follow much of what was going on.
Two entirely different situations, each of my own making, yet two difficult evenings, two full days to recover, because I could not bring myself to stand out by asking for simple accommodations that would not have put me above anyone else, but only put me on an equal footing with them. And yet I could not ask, though I knew I should. I could not ask, and I cannot say that if these situations happened again tomorrow, I would do anything differently.
Late-diagnosed adult autistics, we see the younger generation and we want to cheer, and we want to weep. We want to cheer because they are doing so much good work, and they are demanding things, not just asking for them, that we would never dream of demanding. They have been brought up to be sitting at the table, and it never occurs to them that there’s a whole cohort of people who wouldn’t even presume to be in the same room as the table, much less sit at it. For us, it’s enough that we hear the conversation. For us, rights are enough, because we’re still getting used to having those. Asking for anything above and beyond basic rights seems presumptuous and rude. The younger generation is surprised to see ableist language, rants on facebook when they run into roadblocks when they seek accommodations, and then call us ableist when we try to fix the system without making any waves.
The thing is, we’ve made waves. We’ve made lots of waves, and in return, we’ve been drowned again and again. We are terrified to make any more, and we are tired, too. We are tired beyond belief. We are trying to earn a living and have some sort of life and these people come along and want us to come to rallies, want us to bare our shameful autism secret to the world, and we’re confused. Because you can’t change society in a matter of years, and you can’t change our brains. And we’re alive, really, so isn’t that enough?
I know, intellectually, that such simple accommodations as asking someone to switch seats or drink inside the bar (when she’d said she never got to be outside. I was outside all the time, who was I to deny a simple pleasure for my own selfish reasons?) is not a big deal. I know that. Yet emotionally, I’m not there. I’m working on it, but I’m not there yet.
In the meantime, I ask you to be patient, and in return, I will be patient with you. I will forgive, again and again, I will move on and continue to trust you even as I wait for you to betray me. And many years from now, when the bar that we met at is long since covered in floods, maybe you can forgive me for my lying and deceit. Maybe up-and-coming young activists can see how twisted and dark my mind is, and not resent me, but accept me. Maybe someday, even, I can accept myself.