Not Flapping My Lips

(“Flapping one’s lips” is American slang meaning to stand around talking, usually about nothing important, or gossiping, e.g., the disdainful address, “Don’t you just be standing around there flappin’ your lips.” )

“All that is required for evil to prevail is for good men to do nothing.”
~Edmund Burke

“It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering.”
~Judith Herman

I’m planning ahead for a script to use sometime again soon, because like many people I suffer terribly from l’Esprit de l’escalier, and can never think of the bon mot or good retort or thought-provoking reply until the moment has long passed …

Sometimes when I get excited, I flap a bit. As in, my hands shake rapidly from side to side, causing my (long, limber) fingers to dually perform that single-handed clapping.  In the recent years, I have learned that “flapping” (done in many different ways) is one of those “stereotypies” associated with autism, or with Down’s, or with cognitive disabilities (mental retardation), or with any number of differences that are often socially ostracised.

Which to me does not make a whole lot of sense.  Seriously, WTF?  It does not harm anyone.  And if you have spent much time in North America and seen game shows like The Price Is Right, then you will have observed a lot of (ostensibly) neurotypical/normal people jumping up and down and flapping in their excitement at being called up to play.  But of course, someone will be sure to point out that is a “special circumstance” and that people who are chosen for the audience are selected because they are excited about the opportunity, and are outrageously dressed, and will generally perform in such highly exaggerated manner, and thus be good television fodder.  Well, perhaps.  But my point is that we all engage in stereotypies. (In a previous post, “Stimulating Topics of Conversation”, I noted that fiddling/stimming is another stereotypy that everyone does.)

Unfortunately, we also engage in stereotyping — it is almost impossible not to at some level, as creating such thought patterns is how the brain organises the world.  But we can be aware of and work against negative stereotypes that are socially harmful.

Of course, to deliver that reply effectively, I have to have a script that is not only thought-provoking and easy to remember (without tripping over the words), but is also SHORT.  And if you have read more than two of my posts, you know that brevity is not my strong suit!

But I know how to get around that in my brain. Read the rest of this entry »

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Hate crime spinning out of control

I spent many happy hours spinning around in circles as a child: on the front lawn with arms flung out, on the back yard swing, wheeling in circles on my bike at the end of the cul-de-sac, circling with one hand clinging to the post that held up the floor joist I-beam in the basement, and of course, on the small merry-go-round of the gradeschool playground. Spinning is fun!  (Especially so if you can do so for long periods without even getting vertigo.)

But none of our neighbors ever threatened to burn down our house because I was twirling around and around and around and around and around and around and around and around and around.  Not like this horrific man in Seattle, Mark Joe Levison, who apparently found the sight of a 13-year old boy, Anthony Engen, playing outside or (oh-my-gosh!) looking at his yard to be too antagonising.

The only redeeming features in such a news item is that the police took his threats seriously, as apparently the man has quite the record of charges for assault and felonies in two states.  Moreover, he has been charged with “malicious harassment”, which is Washington’s hate-crime law.

Yes, a news source is actually referring to such threats made against someone just because they are obviously autistic as a hate crime.  Sadly, I am noting this because it is not common.

(Where are we going, and what are we doing in this handbasket?!)

De-stressing with O.T.S.

Funny short story:

Hubby and I are at the local pub having a Guinness. Naturally, the big-screen televisions are on, and he asks me, “Are you watching the basketball game?”

Are you kidding?! I think to myself, and answer, “No.”

There’s a slight pause, then he asks, “Are you staring at the ceiling fan?”

Busted!

Well you know, I’m there to relax, right? Chatting with hubby about life, and enjoying my ale is only part of that.

A pal of mine is very stressed. Sadly, this is a common problem. But even worse, over the years the repertoire of natural coping methods have been so discouraged, extinguished or suppressed that my pal can hardly name what is helpful. Now that is really sad.

We all have ways of dealing with stresses. They can be roughly divided into three general categories: organisation [O], timing [T], and soothing activities [S]. I have denoted each with an initial because the text flow did not easily lend to listing these in categorical sections.

Prevention [O]: We avoid situations that we know will be stressful. Sometimes we can have someone else do a task for us, or set things up so the task does not actually have to be done.

For example, Read the rest of this entry »

The Fine Art of Fidgeting

Most people think of children with Attention Deficit HYPERACTIVITY Disorder as being kids who bounce off the walls, sometimes literally so. Several years ago, there was some debate as to whether or not our kid had ADHD. All of the disorganised, inattentive, losing-things, forgetting-things details were there, as well as the bedroom floor that was invisible from clutter. Certainly the kid couldn’t sit through dinner without hopping up from the chair several times. But in school the kid behaved somewhat differently (as children often do), and remained appropriately seated. Because the kid is also rather reticent, there wasn’t the frequent class interruptions that one gets with the talkative sort of ADHD student.

The kid is now 16, and not surprisingly, has matured as well as gotten older. Years of developing support systems at home have paid off in some areas; Read the rest of this entry »

a-Tunes

So last night the aspie kid, dad and I were sitting around the kitchen table, playing card games. We made a dent in some of the leftover Halloween candy, consumed a couple pots of tea, and generally had fun. Later on that night I was thinking over the evening, and I realised that there were some marked differences compared to similar evenings of my own youth. Read the rest of this entry »

Attendance Required

Earlier this week I had to sit still in one place and pay attention for a longer period of time than I’ve had to do in ages. Man, I’d forgotten how utterly difficult that is to do! I had to not just sit, but “sit appropriately” on a hard wooden pew, and stay seated for three hours solid, and also pay attention to what a bunch of people were saying. I was part of a panel of jurors that had been randomly selected to go through voir dire for jury selection. Of the 24 people who showed up, 8 were finally selected to be the jury. However, all of the extra panel members (including myself) had to pay attention to all the voir dire questions to have our own answers ready in case any of us were to replace a dropped juror.

Sitting there all that time made me aware of how frequently I had little shoulder or head tics. And how much I wished I had a “fidget widget” to have something to do with my hands. And how much I jiggled my foot, and repositioned myself. And how much I wanted to sit there and rock from side to side, but feel inhibited to do so in public (even though I probably do rock a bit when I’m not aware).

There were some expected bad parts and unexpected good parts to the experience. Read the rest of this entry »

Accommodating the Normals

In your place of business, educational institution, or public service area, you will have to make certain accommodations for the “normal” (“Temporarily Able-Bodied”) patrons. (Please note that within Normal culture, it is considered appropriate to refer to them as “normal people” rather than as “people with normality”.) Normal people will usually succeed in schooling, and will apply for jobs that they can do, presuming that they are given accommodations. These needs are diverse, and such accommodations include, but are not limited to, the following items: Read the rest of this entry »

Snagged

Stuck. Off. Transfixed. Whatever you want to call it.

My attention was unexpectedly snagged by sight of something on the kitchen side table. The red cap to a Sharpie, a permanent marker with a pale ash grey barrel. Next to it was a black-capped Sharpie.

It was as though I was see RED for the first time again. Read the rest of this entry »

Uncommon Parallels: Gossiping And Stimming

In an article from the Social Issues Research Centre (out of Oxford), Kate Fox describes in her article, “Evolution, Alienation and Gossip” the functional rôle of mobile phones for promoting community by aiding gossiping. Apparently my text messages are rather humdrum and atypical, as they relate mostly to grocery expeditions, dinner attendance, and doctor appointments rather than gossip.

However, a particular paragraph caught my eye:

“Gossip is the human equivalent of ‘social grooming’ among primates, which has been shown to stimulate production of endorphins, relieving stress and boosting the immune system. Two-thirds of all human conversation is gossip, because this ‘vocal grooming’ is essential to our social, psychological and physical well-being.”

Grooming-talking (“phatic communion” for the psycholinguistics word buffs out there) is the verbal equivalent of grooming other apes.

Perhaps stimming fulfills many of the same functions, to “stimulate production of endorphins, relieving stress and boosting the immune system”?

I realise the comparison sounds really odd. Instead of being a social kind of functioning, it is a typically autistic kind of functioning. I mean, gossiping is a social activity of the highest sort. Rather than communicating in the sense of exchanging necessary data, it is passing along information as a means to promote peace and solidarity between people in the same “tribe”.

In contrast, stimming is an emblem attribute, the very archetypical sign of the autistic. It is pretty much a self-involved activity; one might stim upon something they’re seeing or hearing, but it’s not a social interaction per se.

Of course, nearly all people gossip to some extent, and nearly all people stim in some manner or another. People are people, whether autistic or neurotypical, and it would be erroneous to assert otherwise.

Nor am I asserting that gossiping and stimming are dichotomous states. Rather, that they are two activities that despite being other- or inner-directed, fulfill much the same psychosomatic benefits.

What is also interesting is that both gossiping and stimming are activities with negative connotations assigned to them. Fox brushes away some stereotypes by asserting that men gossip as much as women, about much the same subjects, and as often as women do (albeit more often with work colleagues). It’s not that men don’t gossip, but rather that they don’t like to own up to it because it seems trivial.

Fox says, “Whatever its moral status, there is certainly some evidence to suggest that gossip is a deep-seated human instinct … This would indicate that gossip, far from being a trivial pastime, actually performs a vital and socially therapeutic function.”

Stereotypical stimming activities like hand-flapping, rocking or finger-flicking have historically been actively discouraged and “trained out” because people don’t want to own up to the fact that they are or someone else is autistic. I am willing to bet that a lot of stimming actually still goes on under private cover, or has been translated into more socially-acceptable fidgets. It is too essential to the human condition to do what one can to reduce stress, one way or another. As a cautionary note, when people cannot use benign ways of dealing with stresses, they will sometimes end up using other stress-releasers that can sometimes be ultimately addictive or self-destructive.

In would be very interesting to run physiological testing to measure some of the state changes in stress levels that occur before, during and after someone engages in a bout of stimming. If we find that these activities do indeed aid people in reducing stress, we may then have further proof that attempting to stop or limit these behaviours is literally harmful to autistics (and others).

Just as people with Tourette’s should be able to function in everyday life without having to spend great amounts of energy trying to suppress their tics in order to pass for normal, autistics should likewise be able to function in everyday life without having to spend great amounts of energy trying to suppress their stims. (Of course, I’m not purporting that highly disruptive tics are going to be acceptable everywhere, nor that injurious stims are a good thing. Such blanket, extreme statements are merely strawman arguments.) As long as the tics or the stims are not going beyond someone else’s personal boundaries, then they ought to be considered acceptable.

Common, polite society needs to realise that not everyone moves, talks, interacts or waits in the same standardised manner. Spending enormous efforts to pretend that one is the same as everyone else does nothing to advocate for diversity and does nothing for one’s health. Disabilities and physical differences are a normal part of life, and so are neurological differences.

Recess: Fun With Words

 

Recess means we take a break and play. It’s important to do that once in a while.

DID YOU KNOW …
that there’s a German word for “that song stuck in your head”? Ohrwurm. Literally, an Ohrwurm is an earwig insect, and I have no idea how that bit of entomological etymology evolved. (Earwigs really don’t crawl into people’s ears, despite their names – they do happen to be beneficial predators of insect pests in greenhouses and orchards). I’ll be polite and refrain from mentioning which songs get stuck in my head – they’re usually the really obnoxious pop-music sort.

An Ohrwurm could also be That Word Stuck In Your Head. A lot of us have run into this perseverative phenomenon. You don’t have to be autistic or have OCD or Tourette’s, although it helps.

Repeating a word over and over is a called palilalia, which in an exquisite twist of cosmic irony, is a great word to repeat or play with as well: pali-lali-lali-lali-lalia! One of my favorite words to repeat over and over is “smock”. Say it several times quickly and it becomes quite silly sounding: smocksmocksmocksmocksmocksmocksmocksmock
Repeating that word very many times also tends to turn your lips to limp rubber, so be careful.

Smock is odd for being on my list. Usually the really good stim words have several syllables: Fescennine, balderdash, interlocutor, reticulated, knee breaches or isoflavinoid. I can play around with the syllable stresses on i-so-fla-vi-noid for a goodly number of blocks of rush-hour traffic driving. “Knee breaches” seems anomalous, but for reasons unknown odd clothing names will suction themselves to my consciousness. A couple of months ago, “dickey” was very sticky. (That’s a false blouse front, an absurd article if ever there was one.) This spring past, “galoshes” sloshed repeatedly around my cranium. The inside of my head can be a noisy place, tinnitus notwithstanding.

Instead of, or addition to engaging an autistic stim, you could have a Tourette’s phonic tic if you go blurting out some random word for no damn good reason at all. Although dramatically used in the media, it’s actually rather rare for Touretters to have coprolalia, where one unintentionally says taboo or cuss words. In real life, most of us really mean to when we say those words.

Speaking of stimming, one really has to wonder about chanting mantras …

Lexilalia is when you repeat words aloud after reading them. I run into this with scientific terms and names, many of which have such wonderfully theatrical sounds, like arcane incantations. (Turn on your mental Roll-of-Thunder and Great-Echoing-Chamber sound effects here.) My favorites are:

Cumulonimbus!

Paradichlorobenzene!

Chrysanthemum leucanthemum!

Gosh, isn’t that fun?

The first is a cloud form, the second refers to a common ingredient in mothballs, and the latter is the garden daisy. Horticultural pedants will note that the taxonomists (bless their wicked hearts) have renamed the daisy as Leucanthemum superbum, which isn’t quite as much fun, although I had a horticulture professor who instead of saying su-PER-bum pronounced the species as SUUP-er-bum.

For a while I would burst into uncontrollable laughter at one of my daughter’s Spanish vocabulary words, bufanda (boo-FAHN-da), which means “scarf”. My daughter then had a penchant for spontaneously hollering out the word just to watch me break into giggles. To her dismay and my relief I eventually became desensitised. I think.

Maybe.

(Special thanks to MOM-NOS for reminding me about this crazy topic.)

Getting Stuck

I hate getting stuck.

Everyone does. Hate it, that is. And, everyone gets stuck too, although some of us get “stucker” more than others. Everyone has moments of indecision when they just can’t figure out what to do, thus losing momentum. For most people that just leads to the ordinary sort of stuckness, where one doesn’t make any active decisions for a while, but otherwise continues with the rest of their lives. Or sometimes there’s the “paralysis by analysis” where one dithers endlessly about the problems, analysing and re-analysing them without being able to just settle upon a choice.

Then there are the more obnoxious kinds of stuckness that are familiar to autistics (and to others), those moments of paralysing stuckness. There you are, toodling along in ordinary daily business, when something goes dreadfully awry. Generally we have routines, and we have Plan B’s for when those routines get glitches. But what happens when the Plan B’s fall apart? Or when some kind of glitch comes along that is so novel that it doesn’t fall within any previous parameters?

I can handle a flat tire. I know how to change tires. I have road service on my mobile phone plan for someone to call if there’s a major breakdown. But when I had a major flat and needed a new tire and I was in a new town, and discovered that none of the familiar service stations sold tires — I got stuck. Looking in the phone book didn’t help because I couldn’t tell which businesses were in my new town (or where in town they would be) or whether they were in far, neighbouring small towns.

In situations like those I don’t stay stuck for very long; I’ve learned to shove myself beyond the decision paralysis and ask others for ideas.

The worst sorts of stuckness are the kind that make one look like they’ve been caught in a game of Freeze Tag, or are suffering some odd form of seizure. Sometimes I start and stop repeatedly, beginning and reversing a motion in repeated changes of intent. Sometimes I just halt entirely because my train of thought has become entirely derailed and suddenly I have no idea what I was going to do. This isn’t the ordinary sort of staring confusedly at the interior of the refrigerator and humming idly, wondering what you were going to get, but rather stopping in the middle of my tracks, frozen in mid-gesture.

Getting stuck isn’t always about the paralysis of indecision. Sometimes it’s the paralysis of entrancement. My pal David calls it SES: Sudden Engrossment Syndrome (he’s both a psychologist and prone to naming things in a rather tongue-in-cheek manner).

I was at the hardware store getting greenhouse supplies yesterday afternoon, and it’s that time of year when they’re putting up the Christmas displays. One of the faux trees there was an entirely white one, for which I have a nostalgic retro fondness. (I’m not one for church holidays, but I do appreciate all the shiny bits to be found this time of year.) This one had no ornaments, but was pre-wired with little sparkly blue lights. I absolutely ADORE blue lights! After a couple minutes I realised what I was doing (or rather, not doing — I’m supposed to be an adult at work), and had to drag myself away, feet-first. There was a mental echo of my mother hollering at me, “Andrea! Quit staring at things and come on …” Some things never change.

As you might imagine, stuckness could have the potential for self-endangerment. I know that I have to come up with Plan B’s, and will sometimes do so to such a nearly-obsessive level that it can be a different kind of stuckness. I also know that I can’t admire the passing scenery when driving, neither the neon nor the street decorations nor the cloudforms.

And yet, once in a while Life will throw something at me that trips me up.

“Ooh, shiny!”

Stimulating Topics of Conversation

Today was a long, exhausting day working at summer camp. It was, as some people are wont to say, “a stimmy day”. So that’s the topic of today’s blogging.

One of the complaints I read about on some parenting boards is “the stimming problem”, when a child engages in self-stimulatory behaviours. (No, I don’t mean masturbating, although that could be a stim; we’re referring to finger-fiddly activities, whole body activities like jumping, rocking, spinning, and so on.)

Many people act as though autism is cause of stimming. This isn’t quite true; stereotypical stimming behaviours are associated with autism. Rather, stress is the main cause. Stimming is nothing more than a more focused version of someone else’s “nervous habit”. Various stimming behaviors can be beneficial stress-coping mechanisms, assuming they’re not self-injurious.

We should note that stimming activities are things that EVERYONE does. People smoke, or fiddle with their hair, or stroke mustaches and beards, or spin wedding bands around their fingers, or chew gum, or bite pencils, or repeatedly click ballpoint pens, or fiddle with pocket change, or mangle paperclips, or count rosary beads, or slide necklaces, or play with earrings, or crack knuckles, or doodle on page margins, or stare out the window, or pace, or endlessly swizzle mixed drinks with decorative stirrers … you know, all those stereotypies that neurotypical people engage in.

The only difference is the type of activity. Those previous things are “normal” whereas autistic stimming things are “not-normal”. But how can something be “abnormal” when millions of autistic people do it? Then again, I bet a lot of those so-called “normal” behaviours are done by ADHD people leaking hyperactivity around the edges in a socially-acceptable manner.

I’m prone to “swaying” or rocking from side to side. I’ve been doing it for over forty years. My husband has finally resigned himself to the fact that if I stand and talk for more than a few minutes, I’m likely to start up. (It was camouflaged when I had tots in my arms, but now they’re in high school and college.) I even rock some while teaching and doing presentations (gasp!) and the world hasn’t come to a screeching halt yet. Fifteen-plus years of this and they still send me contracts and invitations. It’s not an issue of “she rocks but she’s a really good speaker” but rather that “she’s a really good speaker and sometimes she rocks”. Come to think of it, not even that. No one has ever mentioned it to me. Maybe no one notices. Or maybe no one cares.

My office chair is a rocking chair. Rocking chairs exist because people like to rock. Even the better sorts of conference room chairs rock. Rocking is soothing. Rock on!

Listening to the same music track repeatedly is a great stim. For the highly distractible ADHD brain, it nicely spackles in some of the attentional inputs, and helps drown out some of the random auditory background, thus enabling better concentration. There must be LOTS of people who like to do this, as many music players have a Repeat function so you can listen to the same track over and over and over and …

Some people try to reduce their child’s stimming through behavioral modification. Unfortunately, this often prevents the person from using their stress-coping mechanism, and thereby increases the sum stress load, which is unhealthy. Likewise suppressing behaviors such as stimming is not going remove the ultimate causality – masking the outward behavioral appearance does not change internal processing. Verily, it can create more difficulties for person by short-circuiting natural learning & stress-management techniques, thus reducing ability to successfully interact with world and others in it.

(And we all know that suppressing the stimming behaviours is not going to eliminate the autism, no matter how “normal” the person acts on the outside. Duh.)

Of course behavioral modification can be used to change problem behaviors; it is something that good parents and teachers do all the time. But smart parents and teachers know that the best way to prevent problem behavior in the long run is to address the cause of the problem. Wise and caring parents and teachers do not blame the child for having problems and stimming, but help the child learn ways of dealing with the daily stresses, and if really necessary, find ways of stimming that are more socially acceptable.

Because you know that stimmy autistic children grow up to be – stimmy autistic adults. And fidgety ADHD children grow up to be fidgety ADHD adults. Next time you’re in a meeting, quietly scatter a bunch of paper clips on the table and watch what everyone does with them!