This whole trip had me thinking: What if we lived in New York City? How would J function living in such a busy, overstimulating place? I know there’s got to be autistic children and adults who live and function in New York every single day. Where are they? And how do they do it? New York City is definitely NOT disability friendly (I don’t know how someone in a wheelchair could use the subway system or get into any of the little or shops or restaurants we walked by). It’s busy, it’s fast, and totally unpredictable. And those things are hard to navigate when you have a disability.
1. The concept of space: J sometimes struggles with space—knowing where the invisible personal bubbles are with people—and in a lot of places in NYC that doesn’t really seem to be a thing. When we waited for our chocolate chip cookies at Levain Bakery, J saddled right up next to someone at the teeny tiny bar counter that seated barely two people. The person beside him with his bike helmet and gear seemed disturbed but not shocked that J was encroaching on his space. I’m sure he was used to it. Because in other places in NYC (like the subway) you’re bumping elbows with three other people holding onto the pole grip or your hips are brushing up to your neighbour’s hips on the seats.
2. Waiting is a very fluid concept : Both kids really needed to go to the bathroom while we were waiting in the Staten Island Ferry terminal (see point 5). W stood waiting in a line that snaked out of the main door of the Women’s bathroom while J walked right into the Men’s bathroom and was out in less than 5 minutes. Steve decided that he would go too and came right out of the bathroom after walking in. Apparently there was a line almost as long as the women’s and J, who was completely oblivious to it, jumped right to the front of it. He wasn’t the only person breaking line rules on our trip. When we stopped for pizza one day a lady held up the entire line micromanaging the servers behind the counter making sure her very large pizza order was just right, not seeming to notice the rest of us in line behind her. Sometimes people wait politely, some people just barge in and control the line. It’s just kind of this unsaid thing people seem to accept.
3. Safety: In NYC you really have to be paying attention all the time. J likes to mentally check out a lot. He likes to pace, stim and stare at his fingers, when he has to wait for something or if he’s feeling anxious. That doesn’t work so well when there’s a throng of people around you and it’s really easy to get separated from your friends and family. Visual and sensory information moves at you really fast in the city and if you have processing issues you’re struggling to keep up. Everybody’s rushing. You rush through the subway stations; you rush across the street when there’s a break in traffic. Even if you are doing all the right things, things can go wrong.
We did a pretty good job of sticking together as a family everywhere we went, but at Grand Central Station that wasn’t enough to keep us from getting separated. We were headed to the Met and Steve and W hopped on the 6 and the doors closed immediately before J and I could get on. Steve was frantically trying to tell me something and kept drawing a circle with a six with his finger against the window before the train suddenly took off. I kept saying, “yeah, the 6” (because this was the 6 train). The look of absolute terror from the tourist family next to J and I, in retrospect, was actually pretty comical because it was a look of “holy crap what if that happens to us.” J kept asking if we were okay, I lied and said yes (because my cell phone was dead and I had no way of contacting Steve). J and I got on the next train and I kept trying to figure out what Steve was trying to tell me. “We’re on the 6” I kept thinking. “Why did he keep drawing circles and a 6?” I searched obsessively over the subway map, found the Met, right between two stops: the 77 street and 86 stop. The 86 stop was just a little bit past the Met and I decided we’d get off there (even though I thought the 77 was closer) because just maybe those circles Steve was frantically trying to draw were an 8 and a 6. When J and I got off at the 86 street stop, W and Steve were right there waiting for us. It was a super stressful 7 minutes, and in retrospect I really wish I had brought J’s ROAD ID with us so our contact info would be with J if anything went wrong. I can’t even imagine what would have happened if it was J and W who ended up on the platform and Steve and I had gotten stuck on the train. My kids don’t have cell phones.
So yeah, if we ever lived in NYC we’d have to figure some safety things out. (After the whole ordeal, W said that as she was on the platform desperately searching for J and me before the train stopped, she saw my Canada toque and knew exactly where we were. So I guess it’s good to look like a tourist sometimes?)
4. The highbrow crowd: Steve and I debated back and forth if we should take J along with us to the New York Philharmonic Orchestra. We knew we’d be getting out late and we knew it would be 2 plus hours of classical music and we weren’t sure if J would have the patience for it. We also knew the audience composition would be a little more highbrow than we were used to. But, we figured that J has had years of attending W’s orchestra concerts that can be rough to sit through and we thought we’d give it a shot. We were thrilled at how well J handled the concert. He seemed to actually enjoy it. He’d flick his hands periodically and whisper to me, “I really like that” when the guest cellist did some pretty incredible runs and bowing during his solos. The hard core orchestra patron beside us, a young man with immaculate posture and hands cupped perfectly still in his lap for the entire first half of the concert, wasn’t as impressed with J’s reactions to the concert. He’d eye’s J’s stimming and would shift uncomfortably. When J whispered “I really like that” to me, the young man turned to J and held a silent finger to his lips. I know he didn’t know that J had autism (absolutely no judging or resentment toward him on our end). At intermission, we decided to move the kids to a different section where we weren’t sitting next to anybody so if anyone needed to whisper something or move in their seats, it wouldn’t be so offensive.
5. The bathroom issue: There is never a public bathroom when you need one, and J needs to go about every hour and a half, so he’d have to memorize pretty quickly where all of the public bathrooms in the city are located if we were to ever survive living there.
In the end, do I think our autism-navigating family could live in NYC? Sure. There’d be a huge adjustment. J would have to get used to small spaces and smaller personal bubbles. He’d have to be more cognizant of waiting and being patient with others. He’d have to really adapt to the concept of fluid schedules (trains don’t always run on time, places run out of bagels, etc). We’d have to really figure out a good safety plan. But I think we could do it. People on the spectrum do make NYC work for them all the time. In some ways, I wonder if living in a place like that would force J to adjust in ways he’s not used to would help him get through his trigger stresses better. Or maybe it would just stress me out more. Who knows 🙂