I've known bits and pieces about it for years, having a niece with it. First thing I learned, and my introduction to it, was when she learned to crawl. She's younger than my own kids, and I'd learned that the very second that mine - and day care kids - went out of view they needed to be followed to see what they were getting into. With one in particular it was always a needed precaution - and I say precaution presuming I'd been in time to prevent the next disaster. Everybody in the family knows which of my kids I refer to. 'Nuff said.
But with all the kids, their first direction when they could crawl was towards another person, whether their own age, or an adult who could meet one of their needs. With my niece, crawling meant she left the room, getting away from the rest of us. We apparently had nothing to offer to meet her needs. It was more quiet and peaceful everywhere else. My previous training, and lack of information about my niece, required me to get up and follow her to bring her back. It wasn't well met. Kindly, yes, but welcomed, no. I learned this was a new kind of child to me. Eventually the word "Asperbergers" entered my vocabulary.
I learned about issues in finding proper schooling for a child with her particular collection of talents, both in getting them recognized, and then nurtured without making her feel like she was sick or stupid or weird, just unique. The public school system in their rural community wasn't properly equipped, despite new federal requirements put in place, nor was the Catholic school. When her parents heard about a better school system for her needs, but in a different town, which required busing, she became enrolled there. Since there were no more moves, I presume everybody was satisfied. Of course more was required of her family, but they researched and connected with other parents and experts in order to provide all the rich environment they could.
When the family got all together we learned my niece was to be greeted with our welcome, but from a respectful distance. I could hug another niece, like her sister, ask her the usual questions one does when you normally live long distance, including many states away at times, and get the expected responses for any well brought up child her age. With this niece, many times a translator was needed, at least through her parents. There was often a pause when one or the other of us didn't exactly understand the other. Sometimes this niece was scolded that something was an improper question even before I got a chance to answer. For example once she asked why I was fat - fair, honest question, right? - and before I could answer it was a simple matter of eating more calories than my body needed so this was how it stored the extras, which I figured would satisfy her curiosity quite well, she was shut down. I have no idea how her question was dealt with afterwards in the privacy of family. I do hope it was answered. I had no way at the time to overrule her parents' decision, knowing full well that my reaction would not be the one she could expect in "polite company" and she needed to learn to operate in that world.
One of the things she needed to learn, and has to some extent as an adult, was interpreting the tone in other people's voices and inserting at least some into her own. Her voice was simply monotone. I could always tell it was her answering the phone when I called, but sometimes had trouble getting the content. That doesn't happen any more, mostly because we speak in person, usually once a year with the whole family. My phone calls usually go to her mother's cell. However, hearing it in my niece's voice has made me recognize it to a much lesser extent in her father's. Not saying he is on the spectrum, just has a fairly monotone voice. Mine is much more all-over-the-place.
I had picked up, very early as noted above, that she was not a very touchy person. That seems to be fairly common. I've never asked why. Is it painful? Is there just no perceived point to it? Is it a loss of control? I've just accepted it as fact for her. A couple years ago however I got to thinking. I like to hug the rest of her family. Mine too. Friends as well. I didn't know if she felt somewhat neglected that I avoided her in that way. It was time to check in with her. So on one of our summer get-togethers, I asked her if she would like a hug from me. I assured her it was her choice, either answer was fine. She thought about it for several seconds, then decided it would be OK. We had about a three second hug. I was delighted at the presumed trust she showed.
This was in marked contrast to a short moment yesterday. It's always the tradition to take pictures of everybody, in a variety of groupings, during these events. See the kids grow. See the family grow. See the adults age. This time her sister asked for us to get shots of the two girls together. She promised she had a "surprise" for her sister. She did. As soon as the cameras were aimed, she reached and hugged her sister from the side and wouldn't let her go. There followed a sequence of shots with various "I want outta here" expressions crossing one face while the other sister kept her grip, all over and done in about 5 seconds.
I find myself with mixed reactions.
You will hear/read the terms "on the spectrum" and "high functioning" with regards to the Asperger's diagnosis. My niece fits "high functioning" and nearly all the hopes and expectations parents have of all of their children, including many which were originally believed beyond what could ever be expected. She not only went to college but left the family to do so and went to another state which had a good program in her specialty, performing beautifully. I was informed by her parents that she would never learn to drive because her processing time would take too long between recognizing a problem and hitting the brakes. She drives. She has a job in her area of expertise, counting various kinds of bees in a variety of locations and habitats, and compiling the data on the populations. She can carry on a conversation comfortably when the extended family gets together, although it will be centered on her interests and experiences, not your typical "strangers small talk". So no favorite movies, what she's gone shopping for with or without success, and so forth. Your conversation will have surprises.
This holds true in online conversations with self-described "aspies" as well. I have become acquainted with several other people online at a favorite political blog I like to spend time at. They either have an avatar name reflecting this identity or make the comment periodically during some other discussion where it has relevance. No punches are pulled, whether it's in their own experiences or correcting information somebody else is positing. I can ask any respectful question and get as much information as I want, often leading me to other questions or ideas. They appreciate the conversation, and I often learn a lot. I consider one in particular an internet friend, and pay attention when she posts something, either personal experiences, or the wide fount of knowledge and experiences she's gained in a very prestigious career. If she recommends a resource she links to, I'll go read it. If I'm "full of it" she'll respectfully disagree, with reasons, also appreciated.
Yesterday was one of those surprise conversations with my niece, a get-together in a restaurant with family members now including 8 people. Only 8 because some worked, some were in other states, etc. When I travel to one of these I like to bring presents, things I would otherwise have to pay for shipping to send around Christmas time. So it's early, so what? This time it was glass pieces I'd been making this last spring. I knew my sister-in-law's favorite color, so that was easy to pick out the glass for. I'd had to ask for colors for other people, including this niece, which turned out to be "spring green". Not exactly positive which shade that meant, I came up with a sheet I'd just bought with half a dozen different blended shades of green, hoping one of them would be good enough to meet my nieces' preferences. Unfortunately the shade I'd mentally labeled closest to the correct one had another color flow over it when in the kiln, but I persisted with my project. I had more ideas for her piece.
Starting way back when she was a young child, my niece appreciated critters much more than people. I recall giant millipedes and a hedgehog in their respective cages, along with many others through the years, a pigeon (or dove?) in a diaper having the "run" of their house. While still young she was a very creative drawer, creating imaginary creatures which brought to mind the then-new forms in Japanese anime, giving my own kids a chance to admire her work and try to encourage her to continue. Without having any of her talent, I came up with putting a glass frog on one side of a bowl and several butterflies on another, with the frog looking at its potential next meal. We had quite a discussion.
Her questions were mostly on the mechanics of putting the glass together. She, and her sister who also got a piece, were familiar with glass blowing as a technique for shaping glass, but these weren't that. I explained cutting sheets and fusing them, the various heat levels in kilns to accomplish different stages, including the order they happened in. How was the frog made? Did I cut it and how? No, while it was cut and I could use that machine, I paid for somebody else's expertise. I wanted it to actually look like a frog. After explaining, I showed her an eye I'd made for it which didn't make it onto the piece so she could see the shape (we discussed surface tension in glass) and the original bright color before the heating for that next step melted and somewhat blended the red eye and green frog into a pair of very dark eyes. I introduced her to glass decals, which the butterflies were made of, and she was surprised there were no high edges on them. (Very thin glass.)
At this point I somewhat whimsically mentioned I'd positioned the frog looking at the butterflies on purpose, so she could either envision it looking at its next meal, always ready waiting for him, or if she chose, see it as the butterflies always safe from it because it would never get to them. (I had no idea which kind of critters she'd "root for" to win that contest. Feed the frog, kill the butterflies? Always leave an unfulfilled hope?) My whimsy got lost in her practicality, however. After examining the butterflies which I'd picked out for their bright colors so they'd show up on the multi-green glass, her comment was simply that they didn't look like the kind which would be good for it to eat.
OK then.
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