Last week I went to OCALICON, which is one of the biggest (if not the biggest) annual autism conference in the country. It’s one of the best things I do all year. I got to speak three times this year, including my first big solo session…90 minutes presenting to mostly professionals about how their language around autism affects the kids who are hearing it. I also spoke on a panel as part of the AGI Young Leaders with my amazing advocate friends. The third day, I spoke with a dear friend and mentor to a smaller group about medical advocacy.
I am considered “medically homebound,” so for me to go outside my door is a big undertaking, as I need many emergency medical supplies on hand. When I go somewhere overnight, it’s some hundred different types of items! In the end, I’m always anxious (how can I NOT have forgotten something!) and ripe for overload. My mom comes with me, and she’s on constant get-this, need-that, where’s-this, hold-that duty so that I can go to this one big event, the one that is in a travel-able range for us. She knows how much it helps me to be connected to my friends and keep on top of things in learning and continuing my advocacy by presenting.
In the first 24 hours of the conference, I found that a minor infection I’d had that morning suddenly looked not-so-minor. Then, I found that my feeding pump hadn’t been pumping all day but opted not to alarm to let me know. That meant my blood sugar was 40 (critically low and at risk of passing out) late that night. The next morning, my body had overreacted and my blood sugar was above the range the meter could read (over 600… also critical). After that awful night, as we went over to the Convention Center, I found that a bolt was coming loose on my wheelchair that would leave me without power assist, and I’d have to be pushed all day, which I pretty much won’t allow.
I got to the event around noon, and I saw my friends as they saw me coming and arms went up and smiles went on and an excited voice called my name.
I just had the WORST night and everything is falling apart! Everything went wrong! I’m here and I won’t be leaving no matter what, but I have had ENOUGH! I need a 5-mm Allen wrench and how in the world will I ever find that here?
Or something like that. All I know is that I didn’t even say hello before it tumbled out.
My friend B said, “I’ll go find a wrench!” She went off to do what sounded to me like pure silliness, because, really? Who could possibly say, oh, let me pull out my extra wrench here at this autism event.
While she went off on a lost-cause mission, my friend S, also on the spectrum and a generation older than me, said such comforting words and started to plan with me how we would tackle getting me set up for my presentation a bit later. Having that planned out lowered my anxiety. She kept reassuring me, like aloe for a sunburn.
Not five minutes later, B walks up with…yep, a wrench kit. We tightened the bolt and then she sat on the floor with me to catch up after a year apart.
My needs were met through the whole conference. I have an allergic reaction to heat, and even light bulbs can be a problem. So, we presented with lights dimmed. I presented from my chair instead of the podium, and the tech gadgets and cords were rerouted a bit. The rooms were sometimes very warm, and there was one that I entered to hear a session and couldn’t even stay in there for a minute…so they propped the doors open and let me sit just outside where it was much cooler.
I know that accommodations are supposed to happen by law. And being at an autism event, it makes sense that people are more aware of the need for appropriate accommodations. But there is no law and no expectation that others would accommodate before I even ask or realize that there is a way to make experiences possible for me that otherwise wouldn’t be. There are times I can’t make it to the grocery store, but making it to the conference and participating is one of the most important things of the year. I learn, grow, and become more confident in handling my needs and asking when I need support. But I learn because in those few days, I feel safe to say, “I don’t understand.” I grow because I can identify my weaknesses and learn from presenters and peers about ways to support them. I become more confident because I’m not afraid that I’m a mess. I am filled up with the love of having my needs met before I see them myself.
If you’ve never been to an autism conference, you’re really missing out. If you’re unsure about it, trust me when I say that you’ve got a village waiting for you!
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