Wednesday, July 11, 2018

Dancing in the Street

Tonight, I went to a Grateful Dead tribute band at the outdoor patio of a local establishment in my city. I have done this for three years now, as they perform every Wednesday evening in the summer. It was  a great feeling, but it was a little lonely with no one to share it with. Despite the abundance of tie-dye t-shirts and Grateful Dead logos around me, I got the feeling that no one particularly wanted to have conversation with a stranger, so I danced alone.

When the band  took a break, I put my headphones on so I could be amused by my music. It was then that I saw my downstairs neighbor walking towards me with some of his friends. He called out my name twice, and seemed happy to see me. He was going to the concert, too. We had a nice chat, and I was happy there was someone  I knew there. Group conversations are nearly impossible for me to figure out how to navigate, though, so I let them sit down and went back to my music, belting out the lines to an old favorite, "Me and Emily, "  while I tried to distract my brain long enough for the band to come back from their break. Bored afterwards, I made my way tentatively to their nearby table. There was a break in conversation, and my neighbor smiled at me, which I took as an invitation to come over. He introduced me to his companions,and we had a conversation about the apartment building we both lived in, and where we'd gone to school. We were the same age. Our schools,Cumberland  and Cape  Elizabeth respectively,had apparently been big rivals in sports and we had a laugh over that. It was nice, and he was welcoming. More of his friends made their way to  his table, though, and I had no idea what to do. How to integrate myself socially, or if I  even should,or what the protocol for this situation was. So I left to  go dance  and sing to the music some  more,glad for the brief connection.

It was long enough for me to remember, though, how incredibly awkward and impossible social interactions used to be. Throwing myself at people who didn't speak the same language as me. Thinking I should be able to relate to people  who were my age, just because they were, well, the same age. Thinking that if I just tried harder or found someone with similar interests, that a friendship would magically materialize. The despair  and intense questions  when it didn't. I was always too intense. The pace, the  tone, the flow of most "typical" conversations is markedly different than that of someone on the autism spectrum, no matter where on the functioning level they are. Someone on the spectrum, if they are social at all, is likely to hyper-focus on one topic for longer than a neuro-typical person. They are likely to want a conversation much further in  depth than the people around them, and to give in-depth analyses of the topic. Some are likely to show more emotion than expected, or not enough. They are usually not aware of what their body language is saying to others,or what others' signals are saying to them. They  tend to be more sensitive, to everything. It's not wrong. It's not a disability, per se. But what it *is* is an entirely different language, an entirely different way to communicate. And it's very hard to make it fit in  with the language that most people - especially young people -- use.

This year marks thirteen years since I found the label of and diagnosis of Asperger's Syndrome, otherwise known as autism spectrum disorder. It marks approximately 12 years since I found a support group of people on  the autism spectrum, and eleven years since I was lucky enough to develop close friendships with several of them, but two in particular. In those years, I have immersed myself in disability culture and community as much as possible, both online and offline. I have now literally spent a third of my life reading about and witnessing the experiences of people who came before me, and the words of those who are currently navigating this difficult life of overwhelming sensory experiences, confusing expectations and an increased rate of loneliness and isolation.
While I will probably always have a little bit of shame ingrained into me from spending so much of my life wondering why I was different, I am  struck tonight by the degree to which it has lessened in these twelve years.
I am happy to finally have something positive to report.

You see, if this had happened before my diagnosis, I would have burst into tears wondering why my interest in the Dead was so much more intense than others; why I wanted to talk about it and no one else did. I would have found being part of a group conversation impossible and wandered away, hurt and lonely. I would have been so jealous at the seemingly good times others were having that I wasn't that I would have cried for hours afterwards. And I certainly wouldn't have approached a stranger to try to start a conversation with them.

But tonight, I  made a few attempts at social integration and when they didn't work, or worked only to a limited  amount, I just smiled at the positive energy  of the crowd, enjoyed counting tie-dye t-shirts (four), and let myself get carried away by the music. I just  danced instead.  I danced around the crowd, having  the confidence that I didn't *need* to be part of it, at least not for this night, and that I could make my own fun when I needed  to.
This label gave me the confidence to  start living life the way that felt comfortable to me. Having friends in the disability community gave me something more positive and  similar to me  to  compare myself to ,and for once  I didn't come up as "there's something wrong with me and I don't know what" but instead  just "yeah, my friend does that too." It is the ability to be part of a group, and feel like you belong somewhere, so you have the ability to tolerate being in places  that are more  difficult for you for a short time.

I still get a feeling of longing in my heart when I see others communicating in the way I want to.      
But I've learned to find connection in older people, whose communication style  more closely  resembles my own, and in people who are neurodiverse in many ways -- anyone whose life is different enough to give them enough compassion to accomodate another person with a difference. I smile, tell jokes, and let myself just be. The positive energy I usually get back when I choose well is an incredible feeling, that I feel compelled to go after every day to fill me up. Without the diagnosis of an autism spectrum  diagnosis  and friends both online and offline to help show me the way and act as role models for me, I don't think I ever would  have had the confidence and self-acceptance to do so.

So tonight, instead of berating myself for being different, I just danced in the street, to paraphrase a 1963  Martha and the Vandellas  song. And I took a moment to congratulate myself for how far I have come.                                                        

Tuesday, June 12, 2018

Random Bench Guy June 2018

Random  Bench Guy for the Win, Downtown Portland on a Tuesday afternoon, 6/12/18 5pm

When I got downtown around  5pm today, there were people playing music and handing out voting guides in Monument Square.  I put my stuff on a bench nearby, intending to talk to them. But as I waved a quick acknowledgement of the non-descript middle  aged guy sitting on the bench, it started a conversation. It started out as a quick comment about the music,and then morphed into a conversation about voting and then our personal lives, which is my favorite kind of conversation.

I told him I hadn't tried that hard to figure out where to vote since  I knew I'd have trouble going in any building.  This was interesting to him and spurred more conversation. But first we talked about geography - he's from North Carolina  and Florida but lived in Maine most of his adult life - pain issues, adjusting to life issues,even chemical sensitivity which he said he shared. He related how much he hated the air fresheners on rental cars! I could certainly relate to that. We talked 60s music and  Marvin Gaye jokes and Jewish and family history, all sorts of things. ( I asked him if he  asked "What's going on?" when  Marvin Gaye died. He  told me I was a funny gal.)

I loved him. He was unfailingly honest, authentic, and emotionally expressive.  His voice expressed authenticity  and emotion. We just connected. For  an hour, we connected. I felt sad to not be able to make it last longer, and see him again, but he was exactly the kind of angel  I needed today to feel heard.

But mostly, he was perceptive in a way that so few people are. In fact,  I have rarely met someone so perceptive. It started when he asked me "Do you think it gets harder going into buildings the more time goes on?" when most people put on a smiley face and ask "Oh, but it gets easier the more you  do it,  right?" No.  For most situations -- No, it doesn't. I was floored ( no pun intended!) that he got this.
                     
Then when we were talking about doing a comedy open mic, and I did my standard "pretend to be interested and act like you'll follow through because it's easier than explaining why it will never happen" routine, he  actually said "But that would involve going into a building, so you probably won't do it,  right?"And I said yes, yes, once again,you are very insightful and completely right.

So then we were talking about, I forget what, but I brought up my autism advocacy. He said "I thought it might be something like that," which I liked, and when I asked him what he had noticed in me to make him think that,he said "Your eye contact.  You look at me when I'm talking, but you look away when you're talking."

I had never noticed that before!! I was blown away. Both by his perception and his willingness and ability to share his honest thoughts!
I always tell people to sit in front of me so I can see them.
Most of the time, when the conversation is easy anyway, I LIKE looking into people's eyes.
I was almost worried I somehow didn't fit into  the ASD category because of it.
But I never noticed that  I often look  away when                                               talking to someone else. It makes it easier  to process what I'm saying, I guess.
So I guess  I'm aspie after all lol.

So this random guy on a bench could tell me what fifteen years of therapists, psychiatrists and other mental health workers couldn't.

When I say I get better feedback and support from random people  downtown than anyone in the mental health field,  I  really mean it.  This is by far the best  example yet, and most people don't  rise quite to this level, but the  authenticity and emotional availability is what I like about my random connections with people downtown.

I take off my hat to this lovely gentleman, and wish more people  were like him.

Just another day in Monument  Square! =)