Before last week’s diagnostic assessment, I asked my mom to fill out one of two copies of two assessment questionnaires to submit to my specialist. These questionnaires, as expected, are written very closely in line with the sometimes-confusing diagnostic criteria. The night before she planned to fill them out, I called her on the phone. Needing to ensure an accurate assessment, I “pep-talked” with her.
“Remember when you were in university and before an exam, your professors cautioned you not to read too much into the test questions?”
She agreed that she had.
“Well, this is a little different,” I said. “With these, you kind of want to do the opposite. These are written with mostly little boys in mind, and they use a lot of medical terms. In this case, you do end up having to read as much as you can into the question so that nothing gets missed.”
My mom agreed again; she’d been through this kind of thing before (in other circumstances, of course). She had a Master’s degree in Special Education, after all. Because she stopped teaching when I was a baby, that tidbit was easy for me to forget.
I went on. “Because when I first looked at the official criteria, I wasn’t sure if certain parts applied to me. For example, terms like ‘repetitive movements’. I didn’t really have any repetitive movements.”
You could almost hear my mom’s nostalgically amused smile through the phone line as she said, “yes, you did.”
That got my attention. “I did?”
My mom launched into Story Mode. “Remember that coffee table we had in the living room? That wooden one with three sections, where the middle section was hollowed out and there was a piece of glass on top, flush with the rest?” (Of course I did.) “Well, you would sit for the longest time, and put your hands under the glass and look down from above, watching yourself clap through the glass.”
I did remember that. And yep, that would count as a “repetitive movement”.
“I remember that! How old was I then?”
She thought for a minute. “Maybe 18 months, not more than two years.”
Son of a gun. Aspie Long-Term Memory strikes again.
I also remember spinning. I also remember staring (I still do that–a lot). I also remember sitting in a chair and gently throwing myself back against the back support of the chair. And memorizing every pattern in the natural-wood-grained walls and carpet.
I also remember being a little freaked out at the thought of being in a room with 20 other kids my age. I remember wanting to make friends, but not being able to. After all, it’s not as easy as walking up to someone and saying, “I think I like you; do you want to be friends?” (Well, when you’re a little kid, that’s more acceptable, which is probably one of the main reasons why (I’ve heard and experienced that) it’s tougher for people on the Asperger’s/autism spectrum to make friends as we get older.) I remember ultimately resigning myself–and maybe even preferring–to play alone. With my rainbow obsession, which nobody else seemed to understand anyway. (What goofy person didn’t want to get their hands on every rainbow-related object they could, anyway?? Bizarre.)
Asperger/autism was staring us right in the face.
Nobody had a clue.
According to the rest of the world, I was just a bright, quirky little kid who knew how to keep myself busy for hours, and enjoyed doing it.
Nobody could’ve possibly known any different, because “infantile autism” (closely related to “childhood schizophrenia”) didn’t cross anyone’s mind (it wouldn’t have been accurate anyway, the way they described it back then). And there weren’t any other terms to describe what I am/we are.
As an adult, I find that I do like to rock back and forth. I can usually “adapt” that into a more “acceptable” activity by finding a rocking chair (I’m pretty sure an Aspie invented those) and doing my thing; nobody thinks twice.
Although I can’t quite directly/randomly pull any specific memories out of the filing cabinet that is my brain, I do think back and I do remember there being numerous times where I did something over and over again, deriving a satiating feeling from it.
Let’s describe that satiating feeling.
I’m sure other people will describe it differently, but here’s my take. It is satiating while it’s happening, but it’s like low-fat food; it’s tough to get your “fill” of the activity. The minute I stop, I feel like something’s missing. My nervous system feels more naked, more vulnerable. To what, I don’t know–maybe an onslaught of some sort. Resuming the activity has a calming, tranquil effect. I feel more complete, like “all is right with the world”. I feel more occupied and less naked. I feel more balanced. It’s very soothing. It’s like a pacifying “reset” button that I keep pushing over and over again.
To be admonished or restrained from doing this activity, or to have it called out into question, to me, would feel like a punishment. I would feel the urge to resume the activity ASAP, and I would resist those restraints, whether physical or verbal. It wouldn’t be fair; everyone else gets to be themselves and gets to be comfortable, so why can’t I?
I don’t honestly remember if my mom tried to quiet my “fidgeting” (as the “adult-me” would come to call it–usually while apologizing to people sitting next to me). If she did, it was gentle and not hostile. If she did, I must not have resisted much or put up much of a fuss. Maybe we found something else to do instead.
But as an adult, my mom isn’t with me all the time. I face more serious stressors now, and it’s just my partner and me. I really only have him to lean on for support and to connect with regularly. At age 39, with my childhood long expired, this was expected and planned for, and it was OK.
In the meantime, rocking is fun. I hadn’t realized how satisfying it could feel. I hear that weighted blankets are pretty awesome, too.
I’ll try them next.