you won't look me in the eye

I was reading Sullivan over at LB/RB as he elucidated why the new hate video by Autism Speaks bothers him. I agreed with his thoughts, but one thing in particular jumped out at me:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown?

Emphasis mine, because this line inspired this post.

I would like to talk about the last time I had a full-on meltdown in public. My last meltdown in private was a few weeks ago, when firefox was self-destructing, but I think all people, adult or child, autistic, NT, or anything else, deserve the occasional private meltdown. The public ones are a bit more difficult to deal with.

I was in New York City, with Kit. It was Saturday, the last day of our vacation, and I was less enthused about the events planned than I had been for previous days: we were to go to the Top of the Rock (a ridiculously expensive trip to the top of the Rockafeller Center), to the Met, and then to get some food. Maybe FAO Schwartz, too, for presents.

This is where I mention that I was not thrilled to be going that high up. I’m not afraid of heights, per se, but more than I’m afraid of middle-distance heights. Being a few stories up in a building is fine, or looking out over Afton mountain as I’m driving home from Charlottesville. I’m positively gleeful in airplanes when I can see the land underneath us. But this middle height, being 70 floors up, was a terrifying, terrible idea. Still, Kitty really wanted to do it, so we went. I have photos from that which still need to get added to flickr. I survived, it was less scary than I thought it might be (though still pretty terrifying), and the pictures are very neat.

I was already a little on edge, though I had survived this terror with relative aplomb, when we arrived at the Met. When we go to places that require a lot of walking, I generally insist that Kit get a wheelchair. I’d rather push all day and have my arms be tired than have Kitty walking all day and accidentally running out of spoons. The Met, though they offer wheelchairs, is not actually wheelchair friendly. You have to stay on the designated paths, there are unmarked stairs, and fuck it all they want you to go through 18th/19th century European art, which is frankly the last thing I want to do. We wanted to see a few things, especially the musical instruments, which meant, of course, that these were virtually impossible to reach (at one point she got out of the chair, walked down a flight of stairs, and I carried it down after her). The music room closed early without warning or reason. A woman tried to tell us how to get to the exhibit we wanted to see in the Japanese section, but it involved more stairs. I was increasingly angry and frustrated, because I just wanted to see the art, but it was overcrowded, overlarge, and poorly designed. We left exclaiming over how terrible it had been.

We made a pit stop in FAO Schwartz to look at toys/see the giant piano (which we’d missed when we went in January), and buy souveniers for Stina and Dylan. I was starting to get cranky because I was hungry, and the giant candy display lured me in like a terrible, neon trap. I bought quite a lot, at an exhorbitant price, about 1/3 for me and the rest for Stina and Dylan. The store was closing, so we left.

I made it about ten steps outside the door before the meltdown hit. I was tired, and hungry, and upset that I had just spent this money irrationally, and I cried. I sat down and refused to move, even when a security guard came over and told me to (Kitty defended me, though I took issue with it at the time, because I was in that mood). I eventually got up and stormed off, Kitty trailing and starting to get annoyed with my attitude. I was completely unable to express how overwhelmed I felt, why this had happened, or how to fix it. As we waited for the subway, I began to calm, but the jostling and pushing and having to touch strangers on the subway set me on edge again. I did not properly calm until halfway through dinner.

Well, so I thought at the time. I didn’t actually calm down until we were on the plane the next day.

We had to get up ridiculously early, because our flight left at 10. I had checked the subway and was pretty sure I knew how to get us there the fastest way, so we left at the crack of dawn. Then the train was delayed. Then we had to transfer trains and that one was delayed. We got to the airport with some time to spare, though I was pretty jittery and upset, hand-wringing and stimming all over the place. Then, in the worst designed concept ever created, we had to check Kit’s bag. See, she came over for a month, and that takes a lot of clothes and presents. She had a purse, a hand luggage bag, her laptop, and a suitcase, the last of which was to be checked. I had a backpack and a suitcase. Everything was a very tight fit as it was. The way it worked was we checked her in, got her ticket, and then went to the counter to check her bag…except that the kiosks to check in were in the middle of the lines to check the bags, resulting in our not being in a line for the first five minutes. When we got her checked in, finally, it was fifteen minutes to our plane leaving.

When I had checked in, all I got was a slip to see the gate agent–no ticket. Between the time delay and that, I was convinced we weren’t going to get on the plane.

We went to get in line for the TSA screening, but were stopped by a lady who told Kit she had too many bags. Despite our pointing out that the laptop had to be out anyway to check it, that Kit had flown with all three before and it wasn’t a problem, that we were missing our flight, she insisted that we put the bag away. And that was when it hit. Sobbing, muttering hate under my breath (didn’t want to get held up by the TSA for extra screening because I’d threatened someone), I managed to shove it into my suitcase, where there really wasn’t room. I sobbed for the next ten minutes as we walked/ran to the gate, and Kitty says that I was pretty harsh on her, although I honestly don’t remember and feel shitty for both doing it and not remembering.

My ticket was waiting at the gate, and there was no issue with Kitty carrying her laptop on board separately–the gate agents were very nice, and half of our plane was late anyway because of the hold-up in check in.

I had very little control over either meltdown (and the second was really just an explosive continuation of the first, a bit delayed), though I’m glad I had the presence of mind not to run into traffic or yell at the TSA lady and get myself in trouble. I felt bad after, because I don’t want to hurt the feelings of those closest to me, and apologized. But that doesn’t negate the fact that it happened.

I am 24, and I have had a meltdown in the past 3 months worthy of a small child. I am, if we must use this language, an extremely high functioning autistic. I pass for normal a lot of the time. And I still have a classic autistic trait, because autism is a spectrum. It has been said before, but there are as many autisms as there are people with autism. Each of us have our skills and challenges, and we each deserve the supports that we need, be it a reduction of sensory overloads, the understanding of our friends and family, or educational supports. I am very glad I have them, and people who love me even when I have a meltdown. I hope that one day, this will be true for all of us on the spectrum.