I had a very interesting experience this past weekend that I have been mulling over ever since.
It has caused me to woncder, how do we know and truly understand things about ourselves if we don't see them mirrored in others?
Neurotypicals, or people who don't have Asperger's or another neurological issue, can be pretty sure that when they interact with people on a typical day, the experience they share will be similar. Not identical, certainly, but the method of communication, common milestones, and sensory wiring will probably all fall within a typical contininuum of "normal" that allows them to relate to each other, and to really *feel* each other's experiences - the cornerstore of empathy and human relationships. But what if you have Asperger's or some other difference, and you've gone your entire life knowing that you are different and never, except in very rare circumstances, seeing someone like you?
I was in the Portland Public Market when it happened, as I usually am. If I'm not in the gelato shop downtown, the Public Market is a pretty good bet of the next place to look for me. I grabbed a copy of the Forecaster to look through and try to relax, and almost stopped dead when I saw it. "H____ ____," it said, "advocate of kids with Asperger's." I stared at the large black and white headline, thinking I was misreading something. Asperger's? In the newspaper? There's an article about.. a girl with... Asperger's? Woah!
I wanted to wave the paper around. I wanted to rush up to the nearest person and thrust it on them and say "See? I exist. I'm in this newspaper! They're talking about me!" even though, of course, they weren't.
Instead, I forced my racing mind to slow down enough to read the article. And then I popped out of my seat like a jack in the box, running over to nearest vendor and asking them if they could possibly look up a number for me. H, the girl with Asperger's the newspaper was profiling, was a senior at Cheverus High School. I called them immediately and asked if they could put me in touch with her. Days later, when that didn't work, I managed to connect with her on Facebook. A week later, we met face to face.
This was two days ago, and I've been trying to think of how to process what happened ever since. Usually, this is not a problem. I normally cannot experience anything without immediately writing about it afterwards. But how do you write about this?
How do you write about the first time I saw her, all 90 pounds and five feet of her, with a genuineness that just seemed to pour out of her skin, an otherworldly being in front of me? Her red coat and her feathered hat matched so perfectly and gave her such a sense of style, of color, of wonderful color in a grey world that made her personality jump out all the more.
How do I write about how seeing her and talking to her was like talking to a younger version of me? How do I write about how I had never quite met someone with all of these nearly impossible to name, intangible qualities, like the innocence and joy and pure selfhood that burst from her voice? How do I write about how seeing her sit there, using her hands to gesture and match her words, was so much like me that I simply didn't know how to process it?
H had grown up only a mile from my own childhood home in Cumberland Foreside. She had gone to my school district until high school, and remembered fondly my favorite childhood teacher in junior high, Beth Fenwick. She had suffered the same childhood as I had, that of being teased and bullied and not fitting in for years upon years. She too had remained nearly mute for many years, scared of her peers with an intensity that probably frightened her as much as it did me. She too took refuge in books, even going so far as to read them while walking in the hallways of school or on the ground at recess, again as I had.
But she spoke with ... something I couldn't quite put my finger on at first.The kind of self-assuredness and self-confidence that only comes from having been through hell and back again, and to somewhere along the way, perhaps quite by accident, have discovered yourself. To have realized that life is short - too short to care what others think about you, too short not to like and delight in yourself and the world around you when you can.
She told me about her transition to finally finding an accepting community at Cheverus, and I told her about the summer program I had gone to as a junior in high school that had finally let me find my voice.
She told me about the autism conference she has spoken at in Boston, and I told her about my experiences speaking at an autism conference in Philadelphia.
She remarked that she thought most Aspies needed to express their emotions in some creative form, be it art, music or writing when I talked about needing to write to process my emotions and experiences.
She talked openly, honestly, intelligently and so much without pretense or shields that I almost had to pinch myself to realize that this was really happening - that there were other people, like me, that communicated this way. She talked casually and openly about how she had felt she had no self-worth when she was younger. She thought she was disposable, not worth anything to anyone. She mirrored my own thoughts about my own experiences so perfectly. When I told her that I had liked Mrs. Fenwick, our shared junior high English teacher, because she told me that she missed me on the days she didn't see me, she got it. Maybe too much. She understood that when someone told you that you were worth something, it was almost hard to believe. When someone told you they wanted to do something with you, or that they liked you, even after years of better social experiences, you could never completely erase the part of you that was momentarily shocked. She said this all with a smile and an ease that showed that she must have spent an awful lot of time thinking about this and found a way to come to terms with it - the way I had.
Two of a Kind
Two and a half hours later, my head spinning from the conversation and my body demanding a break from the physical tension that so much conversation generated (although enjoying the emotional part of me that had been filled up), we decided to take a walk. Mini-me, as I later thought of her affectionately, tagged along with me, asking where we were going. I confidently pointed out the way.
Having lots of ideas that we liked to jot down but sometimes couldn't find the focus to carry out? Check. Self-analytical, likes deep conversations? Check. Too picky about food to eat out (also like me)? Check. Passionate about music? Check.
When we were about to leave the public market to walk to Whole Foods, I was getting my stuff together and eyed my headphones with longing. It had been a fun few hours but I could sure use some music right about then to decompress, I thought. Just then, H interrupted my thoughts by asking if it would be all right to listen to her music on speaker in her pocket. "Sure," I said, then realized that we could both get what we wanted. "How about," I said, "we both listen to our music on our headphones on the way there and take a little break?" So we did. We walked down to Whole Foods the Aspie way.
She jumped on the stone wall just because it was there, prancing and moving about with ease, joy, and the vibrant energy I had always been known for. It was, pardon my by-now over used expression, like looking in a mirror. But not a mirror I had ever looked in, because how are you going to put a mirror to yourself when you're walking around Portland, or otherwise going about your daily life? I always wondered what I looked like to others, but tried not to spend much time thinking about it. I could never take their positive assessments of me seriously, simply because I had no concept of what they would look like. I had never seen myself in a mirror before. Not myself when I was truly being me, anyway. Somehow, the negative comments were all so easy to take on faith, but the positive statements? Not so much.
So here I was, seeing myself as others surely must see me, and I liked what I saw. I mentally shook my head at her joie de vivre, her zest, her energy that seemed to fill up the world a million times over. And I thought to myself, is this what Margie meant when she said "like a ray of joyful energy in the middle of the room radiating to others"? Yes, I believe it was. An un-self conscious, purely and wholly herself, ray of light. Which I was seeing outside of myself. Have I mentioned yet how almost-creepy that was?
She liked to sing. Out loud, like I did. Later, at her house, she would sing to me the country songs we were listening to in a voice so filled with passion, emotion and just pure selfhood that it almost gave me shivers - shivers of recognition. Not of the words, but of the emotions.
"I always wonder what I look like to others," she said. Oh me too, H, me too.
Going the Right Direction
In the car on the way to her house, I tried to figure out where we were. I am terrible with directions and knowing where I am, but lately I've tried to figure it out, at least in the Portland and northern suburbs area. I got tired of not being able to explain where anything was. So when we hit the area with two convenience stores - the name which is, by the way, a holdover of what I called when I was young and there actually used to be two convenience stores - I was trying to think about where we were. "Okay," I said, "This way goes to Cumberland Center, that one goes to Yarmouth, how do we get to Cumberland Foreside from here?" H said to me admiringly "You know so much more about how to get places than I do!" Me? Good at directions? Um, yeah right. I, the queen of not knowing where I am, was being praised for that. What was more significant, though, was that I could tell from her tone of voice that she had the exact same problem I did knowing where she was since she didn't drive.
Neither of us could stop talking, even though we both admitted it made us feel exhausted to be around people for this long. Eight hours was, one must admit, an awfully long time to spend with someone you had just met... but we both wanted so much to be filled up with the other's experiences.
You know, I have always said that it doesn't matter if I have things in common with someone else. It matters, instead, if we have the same way of seeing and experiencing the world. From that, mutual interest will emerge. It has been true with all my friends, but nowhere has it been more true than in this experience. We may be twelve years apart, and our actual likes and dislikes may be nowhere similar, but our way of experiencing the world seems nearly identical. A shocking revelation for someone who had always considered herself so different from others.
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."