I once asked my dad, in that way that young adults have of trying to revisit their childhoods and make sense of them, why people didn't seem to care as much about my struggles as I thought they should.
His response was something along the lines of "You have to look at it objectively and see how many times they did care, not the times they didn't. You have to take the gestalt."
I still stubbornly persisted in feeling like no one understood or cared enough about my struggles, even with mounting evidence to the contrary, more often than I would like.
In fact, I accused a lot of people of this. I had trouble reading the nonverbal messages people sent, of caring, concern and compassion. In my mind, it didn't count unless it looked a certain way. I had this image in my head of how caring and compassion would look like. What words would be used, how it would be expressed. Obviously, I was often dissapointed. Sometimes we talk a lot about wanting people to accept us for who we are, but then we don't let other people be themselves. This is a hard lesson to learn.
Then, tonight, I found out a friend who shares a lot of my social challenges had said to our mutual friend that she didn't want to be with me, because I was not compassionate enough to her when she slipped on the ice. Once I got through raging about how unfair and wrong that was, and how much I tried to understand and show compassion for her, I almost laughed. I laughed because I recognized myself in those words. This is a teaching opportunity for me. How can I be mad at someone else for having the same exact problem as I do? I can still be annoyed, but I can't honestly be mad. She taught me, without knowing it, how it feels to be on the receiving end of my accusations. She made me see how nobody can be even close to perfect all the time, and how someone could be feeling perfectly compassionate in their mind but just not be able to show it for a dozen different reasons at the time. I was probably too focused on not slipping on the ice myself to give much of a response! But she didn't know that.
I try to think of what response I could possibly have to her that would help her understand. I try to think of what would help me. People have tried to explain to me the concept of people having other things on their mind and not being able to respond all the time - "Maybe they're thinking about their grocery list, it's not anything to do with you" and that helped a little, but I still didn't quite get it. I think the only thing that could make me get it was to feel how it felt to be on the receiving end of that bias. "You weren't compassionate to me when I slipped on the ice." My own words coming back to me. Fascinating. We get so attached to our old hurts. Sometimes, when we confront people years later, if they give us what we want... All we can think of is "But why didn't you give it to me when I really needed it?" and the hole still remains unfilled. We feel unloved, perhaps. But it seems this results from putting people on a pedestal, thinking they can do no wrong. People make mistakes, and a lot of them. But at least they care enough to try to make them. In a recent Parenthood episode, the grandmother tells her adult daughter that marriage is all about forgiveness. That could be applied to all relationships. Perhaps my dad was right, you have to take the objective data and figure out, does this person care? Even if they mess up sometimes and don't show it in the ways I think they should, do they care? This can be hard to remember when you're caught up in emotions revolving around not getting what you want in the moment, but, I am now realizing, doesn't make it any less important.
I went to a dinner tonight with some people whose company I really enjoyed. I was quite worried about how I would do being inside the house, since given my sensory concerns I have trouble with most environments. I lowered the bar of my expectations to just hoping I could be physically present, and didn't give much of a thought to how the social part would go. This turned out to be what made the evening, in many ways, a success. I felt so much more at ease and part of things than I ever have in a group setting. As I usually do, I contemplated what caused that.
Just observing and not focusing too much on *making* myself a part of things, but content to observe and finding the place to fit myself in when it was appropriate. Things go so much better when I'm not trying to make them happen. Since I had set the goal just to be able to tolerate being in the house and had no expectations for what would happen socially, I was able to go with the flow. I appreciated what conversation I got, and I did get a fair bit, but I didn't go in with the idea that " I had to have x amount of conversation with x amount of people or else the night would be a failure." If I had, I would have been too tense and agitated to enjoy it. I found a comfortable chair, and just enjoyed listening to.... what I had wanted for so long, to observe what it felt like to be part of a group conversation. How do groups work? How does the conversation start, how does it end, what does it look like in the middle? There was so much to observe. Unlike the rapid fire tenor of young people's conversation, people took their time to come up with something thoughtful to say. The conversation meandered instead of ping-ponged. I think I am a 60 year old in a 30 year old's body. My thought processes are so much more similar to someone older.
I could talk about the conversations I was a part of or I could talk about the feeling of being part of a group energy, and for once the latter stands out more than the former. Now it seems so clear - but I wonder if I can maintain it. I was so insecure - plagued so much by a feeling of being left behind, and determined to make up for it by brute force -
thinking that if I could only initiate enough conversations I'd feel part of things. I admire my courage and my willingness to take the initiative and try, but in my emphasis on how *I* was doing, and if *I* was being accepted at every minute, I missed something entirely....feeling the energies of other people in the group.
The first few times I went to the synagogue, I was so happy to be in a group setting, I'd just look around me with awe at people's faces. I'd drink in the emotion and feeling of their presence, just in awe of all the different energies that people brought, not being able to get enough of the feeling of a genuine smile. I guess you have to do that, somehow. You have to put aside what you think you want and need, find a still place in your heart and feel the energy around you. This only works if the people around you are good people! But in my case, they usually are. Once you are centered and have a feel for the energy, then you can know where to be a part of it. If you are so inpatient as to ignore the energy and just start talking, you're not going to be able to find the openings. I was too inpatient to realize this before, and I fear for myself wondering if I'll have more places to put this into use. I have to believe I will.
I want to say, that if I'm not so focused on my own need, that I'll be able to feel other people's energy, and that's all that matters. But I know that so much of the time due to the sensory and anxiety issues, my need is all I can feel. Maybe I have to be satisfied with those times when I'm calm enough to be able to feel other people.
To use another analogy from the synagogue, at first I thought I could feel part of the community by rote learning, memorization, studying. If I knew the language, I'd feel part of it. I abandoned that idea quickly because I realized I couldn't do it... but when I stopped trying, I was able to feel the beauty and feeling of the songs without knowing the words.
Social interaction seems to operate along the same lines. When you try too hard, you miss everything. But that, to me, seems better than not trying at all. Either extreme, I suppose, causes you to fail just the same, and moderation is key.
I sat and just listened, enjoying the interchanges and flow of energy back and forth between people. I could be part of it by just observing. I am not sure I've ever felt secure enough to feel that before. I did give a few ancedotes to be part of the conversation, when I was able to, and they went over well.
It was the smile on people's faces, the nonverbal energy and vibes that meant so much more than anything anyone said. For once, I could pick up on it.
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."