While I Wait: The Consideration of Labels

I’m still writing from a place of self-assessment. Three months ago, I called and got myself on the waitlist at the AARTS Center at Rush, and then one week ago I called to check in, leaving a message that has not been returned. That’s frustrating. I was told it would be 6-9 months before I could get in, but by now I would like a little more certainty on that window. A friend of mine called another center and was able to have her assessment appointment yesterday already, with a follow-up scheduled for two weeks from now–it’s making me second-guess my holding out for the AARTS Center.

Hers is a different form of neurodivergence–our traits don’t really line up–but I’m still both excited for her to be able to move forward with her discovery/diagnosis and jealous that I’ve just been here trying to hack away at my own without the professional guidance. It is my own choice, of course, to wait, so I think I’ll see how her follow-up goes and then consider giving up on my waitlist spot and see her doctor (or an appropriate colleague). They’re on my insurance, which is huge, because 6-plus hours of professional assistance cannot come out of my pocket.

At this point, I’m trying to keep in mind that a professional assessment is a huge luxury. From what I’ve seen throughout the autism community, self-assessment is respected and accepted, a “when you know, you know” kind of thing. And obviously, I’ve done loads of research on the condition and my own history, so I would honestly be beyond surprised if a professional assessment said anything other than yes, I am on the spectrum.

Yet when I talk to people about it, I insert all kinds of qualifiers, to make it clear that I’m still trying to figure it out. While I have confidence in my methodology, somehow I don’t feel like I’m allowed to say “I’m autistic” or I’m on the spectrum” as easily as I would say “I have a bad back” or “my eyesight isn’t great.” This is most likely because I don’t want to make light of the condition and the people who experience it. Like when someone says “I had the worst migraine this morning. Thank you, Advil!” Having lived with migraines, I know you don’t have one and cure it that fast…with some ibuprofen. Come talk to me when you’re three days in or blind in one eye or you can’t form words. So I don’t want to be the Advil-level autistic complaining about sensory overload or masking my stimming or “I don’t know if I feel love the way other people feel love,” when there are people out there who struggle to communicate basic needs or can’t control their meltdowns in public spaces.

I’ve been thinking a lot about labels, to allow myself to talk about what I’m experiencing but without claiming words that don’t belong to me. Part of the problem is that our society places negative judgment on words that should be free of it, like “fat” or “disability.” And our language changes–it can be difficult to keep up, and we all make mistakes that lead to embarrassment or otherwise hurt feelings. I’ve noticed in talking with friends, many people try to talk around the terminology or use air quotes, out of caution, and it’d just be a whole lot easier if I felt confident in my own condition and could be of some help here.

As this glossary from Zoom magazine mentions, people have different personal preferences, so if you’re speaking to someone on the spectrum and they tell you they prefer a term, use their term. As is the case with much advocacy terminology, often the loudest voices are not those in the community, and it’s just not up to them. That’s why I really like seeing the #actuallyautistic tag–I’d much rather hear from a member of the community than someone observing or living alongside a member of the community.

I don’t currently use the #actuallyautistic tag. My issue is I still feel somewhere in between an “us” and a “them,” again, because I don’t want to disrespect anyone, just in case. Likewise, I get the feeling from many friends and family I’ve spoken with that they don’t fully respect the self-assessment. In some cases, it feels like they’re trying to be nice, to make me feel less weird, but it often feels invalidating or dismissive. I shouldn’t care about that at all, but I think I let it sow doubt about my own experience. Like I’m not already confused and a little whiplashy already.

Ugh, I just made myself call the AARTS Center again and spoke with someone. He only has the portion of the waitlist that he’s scheduling for in December, so I’m “probably on the other list” and should just wait to hear from them sometime next year. No estimate beyond “next year.” I don’t know what to do with that almost-information. Okay, yeah, so back to my backup plan of waiting the two weeks to see how my friend’s follow-up goes then maybe calling her doctor for an appointment. Because if I have the chance to not feel so in between, I should take it.

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