The Combating Autism Act (CAA) is up for re-authorization in the US Congress and ASAN is asking autistic people and their families to let Congress know that the CAA needs to be reformed. If you can want to know more, you can read ASAN’s message. There is a Twitter campaign taking place today and a flash blog next week to raise awareness and encourage people to contact their congresspersons in Washington.
Because I’m a bit of a wonk, I read the CAA last night and then I read the GAO’s report on the CAA. Fun times. One thing that struck me is how autistic adults, if they’re mentioned at all, always come last. When it comes to autism policy and research, we’re barely an afterthought.
But that’s not really what this post is about. The theme of the actions around the CAA is #stopcombatingme, a reference to how damaging…
I started this post weeks ago, but then I put off finishing it. It’s a painful topic, and I was having a hard time organizing my thoughts without rambling. But I don’t like leaving things unfinished, so here I go.
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I’ve been feeling lonely lately. Not that it’s a new thing; it kinda comes in waves. I think this latest time was really instigated by having free time again. For a while I was chatting online daily with a friend, and when that ended it was sad and a hard change in routine, but I became so very busy and stressed that I simply didn’t have time to feel lonely. I was too busy with my work schedule, and a busy season of my photography business, and the craziness of trying to make Christmas gifts and visit people. But all of that activity cut off abruptly. . . and although I was thankful to have my down-time back, it also increased my feeling-down time.
My thoughts for this post have been all over the place. Do I go into the feelings of childhood loneliness? Do I explore the ways I made friends who lasted? Do I share the heartbreaking times where I failed to make friends in new places? Where do I begin with all of this?
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Since graduating from college I have moved a lot. I moved 7 times in 6 years, in fact. Have I mentioned that change is hard? (Rhetorical question – I did). I was hired as a nanny and then had families’ financial situations change, or I moved in with people knowing the situation had to be temporary. I moved back in with my parents a few times when my work/living situation had to change, because they are awesome and supportive. Each time I moved to a new place I really did try to meet people. I’d find a good church and then step outside of my comfort zone to go
to a young adult ministry event, or join a women’s Bible study, or attend a small-group event to join a group. And I met some really nice people this way. . . but I never made a real friend. And I don’t know why. It seemed like most of them already knew each other, had a history, had their own relationships and busy lives. They were friendly to me, but I never felt truly initiated into the group, and was rarely invited to do things outside of the scheduled event. And I’ve never known how to get in.
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Looking back, it seems like I needed an insider to pull me in. Junior high sucked. I’m sure eventually I’ll write more about bullying, but for now I’ll just say that those years were the worst of my life. I hated going to lunch in junior high (and I love to eat), but I didn’t know how to change where I sat. Then one day my badminton partner in gym class invited me to sit with her at lunch. I long referred to her as “my angel” for rescuing me in that way. By inviting me to eat with her, she provided me with the “references” I needed to get in with a new group of girls. This group (though a bit fluid over the years) remained my social group at school until graduation. While far from perfect, we did share a lot of fun times, and for that I am thankful. In fact several of us got together for a private “un-reunion lunch” 10 years after graduation (I had *zero* interest in attending my class reunion); I truly enjoyed seeing them again after so many years. Yet at school, especially at the end, I often felt lonely, even within this group.
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I’m not really sure at what point in my life I started to feel different. I felt different from the other girls because I was a tomboy. Everyone always called me “smart” and it set me apart – when I got older it made me sad that most people would sign my yearbook with something like, “You’re so smart!” instead of something about being friends. In high school I felt different because I wasn’t dating (not my choice) or interested in partying (my choice based on faith).
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I loved the times I had a best friend. If I didn’t, or if they weren’t around, I always dreaded the times at school where we were directed to pick a partner or group. I knew that if the number of friends wasn’t right (3 of us and it was 2 to a bus seat, for example) I’d probably be the one left out.
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In the collection of stories/essays/poems Women from Another Planet?, Jane Meyerding tells a story that really resonated with me. She writes about going to Girl Scout Camp one summer, and how she participated and enjoyed every day there. It wasn’t until the overnight camp-out that she realized something:
The other girls had become friends with one another. Alone there, with no adult present to direct us, they chatted and whispered and laughed and interacted with seamless ease. How did they know what to say? They weren’t talking about anything, and yet they talked constantly. My conversation was limited to specific subjects, not including anything as nebulous as girltalk or smalltalk. Moreover, they seemed to know each other in a way they didn’t know me — and I certainly didn’t know them. I had been with them as much during the summer as they had been with each other. I had done everything they had done (as far as I could tell). And yet I was a stranger there. The only stranger in the tent. I realize now that one or more of the other little girls in that tent may not have been happy and socially successful. But all of them knew how to put on the act. They may have felt lonely. They may have felt inadequate. But they knew–even at eight years old–how to behave in a social situation.
(p 158, 159)
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It’s painful to not understand why I’m not accepted as a friend at times. The people who become my close friends all tell me I’m a great friend, but most people must not see what they see I guess. I remember one time (that I will keep intentionally vague). I was in a room with a girl I thought I had a good relationship with, and she stormed out of the room appearing very upset. I had a feeling she had gone to talk to girls in another room of the house, and since I had a question for one of those other girls I went over several minutes later. Sure enough, the first girl was there, and it was clear she had been crying. Later she mentioned it within another group context and I asked about it, and she explained she had fought with someone. I never knew why she chose to seek out the other girls instead of talking to me, since I was right there. But it hurt.
We flourish much better in an environment where the emphasis is on academic achievement and not socializing. Of course we need to learn to socialize, but through shared interests with like-minded individuals, not by being thrown to the lions. Emotionally, we require an atmosphere of tolerance and non-judgement.
This was definitely true for me, going to Grove City College. People were actually nice to me. It was so weird, but wonderful. And one of the best things that happened there began on the first day. The college organized “mentor groups” to help us get settled in and meet each other. I entered that first day with the determination to try harder to make friends, and I was acting much more social and outgoing than was normal for me. But when I sat down in the grass with my mentor group I saw an individual who looked as shy and uncomfortable as I truly felt. We were both wearing Christian rock t-shirts, which gave me a chance to strike up a conversation. I put forth a little extra effort to initiate with her. It didn’t happen for a while, but she became my best friend, and still is after a decade.
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Like a lot of people on the spectrum, I often feel more lonely when I’m surrounded by people than when I’m truly alone. I think it’s the seeing the NTs interact and feeling so unlike them. I read one person (I’ll try to find the reference) describe it as feeling like being separated by a pane of glass, being able to see the interactions and not really join them.
I get frustrated when I hear NTs generalize that autistics are “anti-social” or “loners.” In fact, I heard someone who works in my field say, based on her experience with an autistic close relative, “They don’t really make that ‘human connection’ with other people.”
The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone, without even noticing this is happening. Whenever I overhear someone remark how much I prefer to be on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold-shoulder treatment.
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A few weeks ago I was riding in the car with my family. Sitting in the backseat, I gazed out the window at the dark wintery scenes. I noticed a feeling that I recognized as familiar. As I saw each house, with warm light seeping through the curtains across the cold darkness between us, I felt pangs of longing. I wondered why. Maybe it was a metaphor created by my soul.
Walking Inland 