Driving to work this morning and listening to NPR, I heard Terry Gross announce today’s show (April 21, 2016) would be about autism and some new autism research that has apparently enabled an autistic man to experience empathy for the first time in his life. I got a bit misty-eyed as my heart leapt at the idea and immediately sank at the flood of poignant memories of all the times I have simply but profoundly misunderstood friends, family, and romantic partners.
I will listen to today’s Fresh Air, and I will probably write about these social interaction difficulties later, but I’m not prepared to do that now. Some of them are too recent and too tender. Instead I’m going to write about motor planning issues, since I’ve just learned the term for a problem I’ve had all my life.
A big component of the difficulties faced by people with autism spectrum disorders—especially those whose difficulties are less conspicuous—is how to describe their inner experience to non-autistic people. It’s very normal for people to look for commonalities with the people they’re talking to, but when a friend says “I’ve felt like that” or “That happens to everyone,” it only demonstrates to the autistic person how poor a job he did at explaining what those things are like for himself.
People with autism spectrum disorders often have difficulties with motor control and/or motor planning. The first has to do with actually getting your body to do what you are trying to do. The second has to do with breaking up a complex physical task or series of tasks into understandable and do-able parts. Both kinds result from poor communication between the brain and the body. These difficulties can be profound or subtle, and, interestingly, they are unrelated to the “severity” of an individual’s autism. In fact, non-autistic people can have the same impairments, or can develop them after traumatic injury.
Long before I knew I had autism*, I was aware of my deficits when it came to learning certain kinds of fine motor skills. It is really difficult for me to “pick things up” by just watching others and trying to mimic what they do, and trying to “feel my way through it” doesn’t seem to help at all, because I can’t really imagine what it feels like to do the motion correctly. The more things I have to pay attention to—body parts involved, objects or people to monitor—the harder it is for me to do. I can become overwhelmed by such things.
It takes me a long time and a lot more practice for new skills to go from something requiring (a lot of) cognitive concentration to something that becomes “second nature.” People talk about “muscle memory” all the time. I don’t know the scientific term for it, but that’s the thing that allows me (or any of us) to write with a pen or touch-type without actually thinking about it. And doing things without consciously thinking about all the little motions involved is what allows us to do them effectively—or, in some cases, safely. Imagine driving on I-95 while concentrating on the position and sensation of every body part involved!
I learned to print before starting school by “drawing” letters on those big pads with dotted lines. It took me a long time to realize that I could make shapes similar to those, but which were easier for my hands, and still communicate clearly. That’s what we all do, or everyone’s handwriting would be identical. Once writing became automatic for me, they decided I had to learn cursive, because it was faster/better, and suddenly I was back to drawing pictures of letters, and I was slow as fuck! And they graded us on handwriting, so I was blocked from getting straight As (which earned an extra token bonus at Chuck E Cheese!) for a year and a half!
Then 6th grade came around, and they told us we could write however we want, and I really couldn’t understand why we were taught cursive at all, or why we didn’t learn it from the very beginning! I switched to using all capital letters, developing my own ways of connecting them, and getting really fast without becoming illegible.** I’ve occasionally tried writing in cursive since then, and I really can’t. I’m still stuck in the same place of needing to think too much to be able to do it. This, at least, is something I think that everyone has experienced occasionally: trying to think about doing something you normally do automatically and discovering that you can’t do it. If I think too much about how to type, my fingers go all fumbly. I sometimes blank on a pin number, but then relax and just let my finger do what it is used to doing.
Once I’ve learned a physical thing, it’s also extremely hard for me to learn a new way to do it. (Like with handwriting.) Our driver’s ed car in school was an automatic (of course). My father drove only stick-shift cars, and I quickly discovered that learning both was just too hard for me. I just couldn’t keep track of all the things I had to do just to make the car go in addition to the “essentials” of driving. I still haven’t learned stick because I’m afraid it would mess up my ease with driving automatics. In a related issue, when I got my first car with key fob door locks, it took me months to get used to using a button instead of a key—and years later I still occasionally lock my car with the fob, and then try to unlock my house with the fob too!
So here I am at 40, and I have a very good sense of my strengths and my weaknesses. Basketball and football: No. Frisbee: Yes, yes, yes! Running: Not anymore (I can’t stop myself from running at my high school pace and cramping up!). Walking, cycling, hiking: Yes. Wheelbarrowing, shoveling, sledgehammering: Yes. Dancing: No, dammit!***. Typing, writing, coloring: Yes. Drawing: No. Backflips: No. Cartwheels: Whee! Tree-climbing: Yuppers! Bowling, darts, archery, mini-golf: Yes. Video games: Usually yes. Musical instruments and yoga: It’s a slow grind, but I’m trying!
I listed those last two together because they’re my current focus. I understand the benefits of both for physical and mental health and well-being, but it takes me a long time to learn the basics, and I’m quickly left behind by the “class.” I started going to Hatha classes again recently, because I want to be sure I’m learning the fundamental poses for my home practice, and I’ve started going to a Ukulele meetup group to try to learn the fingering for chords, but I feel like I need someone watching me the whole time to correct my technique. Whenever the yoga instructor starts “flow” poses, or the Uke group plays a simple song, there are just too many things for me to keep track of to keep up. I don’t have time to “feel” what I’m doing before I’m supposed to be doing something else. I know these things can come in time, or I wouldn’t be good at so many complicated things, but I can’t ask the group/class to slow down just for me, and I get nervous about practicing at home and ingraining bad techniques.
The last thing I have to say on this subject is that I often don’t understand what people mean when they describe what things should feel like. I haven’t the slightest idea what it means when the Yoga instructor says to “rotate my thighs,” and I can’t manage the pressure with which I press the strings onto the frets at the same time I’m trying to control which fingers are doing the pressing. Pencils and ballpoints hurt my hand after a while, because I press too hard. I also don’t know how to “rate my pain” from 1 to 10 in the doctor’s office or how to label it as aching, sharp, or radiating.
There’s no real way to conclude this essay, because it’s informational. I hope it makes things a bit clearer for you who read it. I can’t tell you that this is what it’s like for even one other person with autism, but it’s what it’s like for me, and not being able to explain it has always felt isolating.
The urge to write this was almost irresistible. I couldn’t concentrate on much else until it was finished. My next post will probably be about a concept called “capture” described in Dr. David Kessler’s latest book: Capture, once I’ve finished it. (If you click on the link, you can read a lot of it online.)
*I received my diagnosis two months after my 37th birthday. Before then, I thought I was just some special species of nerd.
**Oddly, I didn’t realize that I didn’t have to continue to painstakingly draw my signature in longhand until my early 20s. ???
***I like music and moving to it. I also like women, and I know how much most of them like dancing—and how naturally they seem to do it. It’s definitely an experience I want to share without looking like a caricature, but I just can’t keep track of so many ways in which to move so many parts at once!