Monday, June 18, 2018

Reading the Research: Growing Up Fast

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article answers as least one question I had when I was growing up, and highlights two different trends regarding stress while growing up.  The question that this article answered was: "Why did I seem so much more mature in a lot of regards, compared to my peers?  Was it just the autism?"  Apparently, it was not.

These scientists did a longitudinal study, which is one of the very best kinds of studies for understanding people and getting good data.  It also takes a lot of time and money, because the scientists literally check in with their research participants once in a few years.  Sometimes they even repeat the entire set of tests from the very first part of the study each time they see the participants.  This particular test studied 129 one-year-olds, paying attention to life events and how much stress each child went through, at what times in their lives.

It seems that children who went through negative life events (major illness, parents getting divorced) tended to mature faster when it came to key portions of the brain: the prefrontal cortex (which is linked to our personalities), the amygdala (which helps regulate emotions), and the hippocampus (which is involved in memory-forming).  Interestingly, if the stress held off until the teenage years, the opposite was true: the brain tended to develop more slowly when that was the case.

Personally?  I remember being told, often, that I was a very mature child.  I found it easier to speak to adults than I did other children.  I remember being annoyed by the antics of my classmates.  And strongly, I remember being dubbed "the cool freshman" in my first year of high school.  Where most high school freshmen were hyper, I was calm.  Most said exactly what they were thinking without a care for context or others, I kept quiet, listened, and spoke rarely.  This was noticed, and approved of by, the small group of high school seniors that I hung out with.  When I was a high school senior, I dubbed a similarly chill freshman with the same title.

I always kind of assumed I simply had a different mindset than my peers, because I was always kind of odd.  Based on this study, it's quite possibly safe to assume my brain was simply further along on its developmental path than the brains of my peers.  I do wonder how this research plays with the research that says that autistic people's brains don't develop as quickly, or do neural pruning as much. 

Friday, June 15, 2018

Worth Your Read: To Neurotypicals on my 36th Birthday

I'm still suffering from burnout, and just trying to take care of myself while I figure out how to make it better.  But I didn't want to leave you all with nothing.  So here's an article I'd be hoping to turn into a Friday post at some point.  It speaks pretty well for itself, though, and as I'm turning 30 this year, it's more and more relevant...

https://medium.com/@sarahkurchak/to-neurotypicals-on-my-36th-birthday-ae2fef2e4318

Wednesday, June 13, 2018

Legwork and Life, week of 6/13/18

I seem to be juggling burnout along with my responsibilities this week.  It's very distressing, because I can't seem to focus on work and can't seem to get anything done even if I do.   I talked about having vacation days a few weeks back, and I think maybe I'm going to have to do that... or to be more precise, my brain is making me do that.  I still have the rest of the week to work on things, but I feel (and am) very behind. 

I may end up needing to take a vacation day or two.  That's not the worst possible thing, but it upsets me to miss a day (or several) after having an unbroken streak of updates for years.  I guess what's most disheartening to me is that I can't seem to duck my head and suffer through it the way I have other challenges.  Part of it is probably because the only deadlines for this blog are mine, and those feel less final than someone else's imposed deadlines.  Still, I'd like to do better... but my brain simply isn't letting me.  At some point, you have to respect that a brick wall is a brick wall and won't give, rather than continuing to try to headbutt it down. 

So that said, if I miss this week's Friday entry, I'm very sorry, and I hope to get back on track soon. 

I've spent most of the last few days reading familiar books, old webcomics, and other comforting things in hopes of soothing myself and getting refocused so I can get back to work.  I may just need a whole week of that, or something.  The fact that the fabric for the blackout curtains is finally going to come in soon is probably going to help, too.  When that happens, I can finally get blackout curtains made and put up, and hopefully sleep better as a result.  It's been months, and the lack of sound sleep in the morning is probably wearing on me. 

In happier news, I'll get to celebrate another monthaversary (like anniversary, but for each month) with my spouse today.  We do a little miniature togetherness celebration each month on the 13th (the day of the month we were married, and also started dating).  We give each other small presents, or go out to eat, and just generally spend time together.  It's kind of like having a date night, but once a month.  This month we both got each other Dungeons and Dragons-themed Tshirts, but the shirts are late, so we'll go out to eat together and Chris won't have to cook today, which is kind of a double treat for him. 

Other happy news: the trip to the chiropractor was a success.  I no longer feel like my legs are on the verge of falling asleep.  I wasn't sure if the adjustment had fixed the problem at first, and was hyperfocusing on my legs, which also made it hard to tell what was going on.  But after I forgot a bit about the problem, it seemed to clear up.  I now seem to have my regular leg problems, rather than disturbing new ones. 

Monday, June 11, 2018

Reading the Research: Memory Transfer

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article is in the far end of theoretical, but had such interesting ramifications for autism and PTSD that I couldn't leave it alone.  Today's article suggests the possibility of transferring memories from one organism to another.

The experiment was done on marine snails, so you can pretty much guarantee this won't be available for humans anytime soon, but basically, the researchers found it was possible to use nervous system RNA to "transfer" a reaction to having their shells tapped on.  The researchers gathered four groups of snails.  The first two were the preliminary group.  One set in the preliminary group was left alone, the other was exposed to mild electrical shocks delivered to their tails.  RNA was then gathered from the nervous system of both preliminary groups. 

The remaining two groups, the experimental group, received the RNA.  All four groups of snails then had their shells lightly tapped on.  The normal reaction to this stimulus is to contract into their shells, but only for a second or so.  The experimental snails, though, which had been given the RNA from the group that had received electrical shocks?  Their defensive reaction nearly matched their donors' reactions (40 seconds, average, versus 50 seconds for the snails that had been shocked). 

It might be a bit of a stretch, at this point, to call that "transferring a memory," but at the very least, it did seem to transfer a basic reaction.  The senior researcher thinks this suggests an alternate theory for where memories are stored.  It's currently assumed that memories are kept in the brain's synapses, the connection points between neurons.  This researcher thinks, instead, that memories are stored in the nucleus of those neurons.  The experiment backs this idea up, since the RNA was taken in such a way that the synapses weren't involved. 

If it becomes possible to transfer reactions, and even whole memories, from one person to another, this could be an enormously useful teaching tool for autistic people, and a possible therapy for PTSD and Alzheimer's.  The latter two conditions could be treated by damping down the power of memories (for PTSD) and reminding or re-introducing memories (for Alzheimer's). 

Using this for autism would be a more complicated story.  Might one be able to teach a person, by another person's memory, how to tell whether someone is lying?  Perhaps some memories of the appropriate level of eye contact would be a good reference to have in one's brain.  Or a "standard playbook" of things to say in specific social situations, as shown in a set of memories, might smooth our way to handling those situations in our own lives.  (Things like "I'm sorry for your loss" when told someone's family member has died, for example, or small talk about the weather). 

Heck, I've often envied my doctor's ability to take in the details of a person from head to toe, recognizing signs of inflammation, depression, anxiety, and other conditions.  Might that, with sufficient numbers of memories to compare by, also be transferable?  We don't, as of yet, have any idea what the human brain's maximum capacity is.  Things that are forgotten are never truly gone, they're simply misplaced and the brain can't find them any more. 

It'll be interesting to see if this research can be replicated, and if it'll take off and become something remarkably useful to humans.  Even with the advancing rate of technology, I'll still probably be 50 before that happens, but if Alzheimer's is still around then, I'd love to not worry about losing my most important memories should I develop it.  And future autistic people might not have to struggle so hard with social situations. 

Friday, June 8, 2018

Sensory Processing Difficulties: Sight (Part 3)

This is part 3 of a series on Sensory Processing Difficulties.  Part 1 was on touch, and part 2 was on the proprioception and vestibular senses.

Brain-Eyeball Communication

So, usually when people think of their sense of sight, and things going wrong with it, they think about the physical eyeballs, glasses, eye charts, etc.  Perhaps red-green colorblindness comes to mind, or cataracts.  While those are certainly important, when I say "visual sensory processing difficulties," these are not what I mean.  There's nothing physically wrong with my eyeballs (well, besides some nearsightedness): the rods, cones, and optic nerve are all just fine.
 
Instead, sensory processing difficulties are:
  • disorganization in the muscles the brain uses to control how the eyes focus
  • oddities in how the brain itself processes the data sent to it.  
One or both of these can affect a person, and because vision is such a basic sense, people tend to take it for granted and assume that others see the exact same way they do.  Particularly when the eye doctor tests come back with no significant problems.  But, like me, just because the eyeball and optic nerve is in good health, you aren't guaranteed to not have problems with your vision. 

Brain-Muscle Miscommunication

A normal person can follow the path of a bouncing ball down a driveway, for example.  A person with muscle-coordination visual processing difficulties might not be able to do that.  Their eye muscles may not track the movement properly, and as such, the ball escapes their field of vision and is gone.  They might also have difficulty keeping their eyes on an object as they move, find it hard or impossible to read lines of print in order, or find it difficult to change between looking at a blackboard and looking at a book on their desk.

The end result of these problems can include tons of headaches, regular squinting, frequently losing your place while reading a book (and continuing to resort to using your finger as a guide), trouble copying information from a blackboard, difficulty reading signs or your dashboard while driving, avoidance of stairs, and even avoidance of groups of people due to the dizzying difficulties of keeping track of them all. 

Again, this is not something special glasses or surgery can fix. It's a oddity in the brain itself.  The brain itself can be trained by a specialist, and accommodations made so the person can slowly work toward more normal visual processing. 

Visual Hypersensitivity

This comes in all kinds of exciting flavors. 
  • Light sensitivity: oversensitivity to LEDs, sunlight, fluorescent lights, camera flashes, other bright lights, and/or glare from light sources.
  • Contrast sensitivity: separating black text on a white or off-white page is easy to most.  Not to these folks: the letters can seem to blur into the white page rather than being sharp and defined, which makes it very hard to read.  
  • "Tunnel reading" or restricted span of recognition: difficulty reading groups of words or letters together.  This can make it hard to move from line to line in a book or article, read for the content as a whole,  and even copy words from a page. 
  • Impaired print resolution:  in which the letters on a page or a computer screen are unstable, shimmer, or even move.  Again, makes for bad times when needing to read books, reports, or blog posts written by snarky autistic adults on the Internet.
  • Environmental distortions: like impaired print resolution, except with whole objects moving, shimmering, or changing.  Stairs, the faces of family, and even the floor itself can become  anxiety-provoking.  
Light sensitivity is by far the most common vision complaint I hear from fellow autistic people, and I myself suffer from it.  You can find yourself overwhelmed quickly in otherwise normal situations, even to the point of feeling like the light is stabbing your eyeballs or brain.  This is particularly true with LEDs, which have gotten more and more popular in headlights and even regular lightbulbs.  There's something about the quality of the light that makes it harsher and brighter than incandescent bulbs.  The constant glare can make people tired very quickly, or even become dizzy and develop headaches.  
Things like "walking into sunlight," "looking at clouds in the sky," and "looking at snow" can all hurt my eyes.  Even on an overcast day in winter, the whiteness of the snow can reflect enough light to cause stabbing pain.  Headlights at night are awful, particularly if someone's forgotten they turned on their brights.  I usually have to resist the urge to shut my eyes entirely while making rude gestures at the thoughtless jerk.  And that's assuming those headlights aren't the newer LED ones, especially the blue-tinted ones.  If LED headlights are involved, chances are I'm going to suffer if I'm anywhere near them.  

Also, camera flashes.  Can I just say that they're basically the worst?  Most people like taking pictures, and that means nobody gives a second thought to whipping out a camera and telling you to smile.  If it's a smartphone without a flash, that's one thing... but some people still like their old fashioned cameras, and being told to smile while being metaphorically punched in the eyeball is just adding insult to injury, in my opinion.  I used to never be able to smile for cameras, in part because smiling was hard, and in part because really, who wants to smile if you know you're going to be hurt?  As an adult, I try to be graceful about being metaphorically punched in the eyeballs, especially around holidays, but it doesn't ever not hurt. 
Fluorescent lights are a whole different kind of suffering.  Did you know that fluorescent lights actually flicker?  They do so at twice the rate of the electrical supply, but most people can't see such a quick change, so the light appears to be uninterrupted.  Except to people who can see it, at which point, well... ever been stuck in a room with a flickering light?  Did it distract you from what you were trying to focus on?  Maybe annoy you somewhat?  Possibly, the longer you sat there watching it flicker, the more annoyed you got?

Yeah, now imagine that's every light in every room in your workplace.  For many children, it is exactly that.  Fluorescent lights are very common in schools.  If the person has auditory sensitivity, they may also be able to hear the flicker as well as see it.  Needless to say, this is immensely unhelpful to learning and focusing.  If you had to try to take notes or learn in a strobe-light room, you'd do poorly and dislike being there, too.  
I don't suffer from any of the other types of visual hypersensitivity, but you can imagine, just from reading what they're like, how much they'd get in the way of an average person's life.  If text or objects in your field of vision warp constantly, or even occasionally, recognizing faces or reading reports would become far more tedious, or even impossible.  

Not Listed Above, But Apparently a Thing

What I do have is something that doesn't really fit into any of the categories.  




This is an overly complex line figure.  It is also a psychological test.  You have a person look at this thing, then give them a pencil and have them try to draw one by looking at it.  Then you take it away and have the person draw the figure by memory.  Most people get the general outer shape, then fill in what details they remember.  You can then tell how good their visual processing and attention to detail is.  

When I tried to make this drawing from memory, I drew it clumsily as a series of boxes, with most of the details in the correct places, but the overall shape was off.  I didn't remember how many boxes they were in total, and didn't consider that the whole shape could be construed as "a big rectangular box with some extra stuff on the edges."  I got a decent number of the fiddly details, but the overall reproduction was significantly poorer than average for my age, due to lacking the general structure of the drawing.  I did somewhat better when I was told to try again but instead try to draw the figure as a whole, and then add the details. 

From this, the professional recognized that I tend to see parts of things and not the whole of things, and that it's hard for me to take in lots of visual detail.  This is particularly true when it comes to art and visually complex maps or pictures.  I don't get a whole lot out of most fine art, as such.  I think this probably also explains why it takes me so much longer to see things in video games, and why it was so complicated for me to learn to drive.  In some video games, especially the one I play, you're supposed to be looking for small details in amidst the terrain, and then reacting to them quickly.  This is hard if you have trouble finding those small details amidst all the other details.  Kind of like looking for a very specific bit of hay in a haystack.  

Driving is very visually complex.  There are other cars, road signs, traffic signals, pedestrians, bicyclists, your dashboard, and animals... just to name the things that are relevant to the driving experience.  There's also all the scenery: the buildings you pass, flowers and plants, people in your car, billboards...

Part of learning to drive, for me, was learning where to look for things, and what to look for.  The scenery seems pointless to look at, but sometimes it has road signs, so you can't ignore it entirely.  Not all road signs look the same, particularly street signs in cities and towns.  Then, too, the problem is multiplied by movement.  All these things are passing by, which means you have a limited time to process them before they're gone.  If you missed them, too bad/hope you didn't need that information. 

The precise diagnoses that went with this brain-eyeball communication oddity were Attention-Deficit Disorder (specifically, I was more impulsive than usual when it came to visual processing), and Cognitive Disorder: Not Otherwise Specified (concerns in visual processing and complex visual-motor integration).  These can both be summarized by saying, "She sees stuff weirdly."  

Summary

This week I've described visual processing, what it is and isn't, and most of the ways it can go wonky.  I've also included a description of my particular oddities when it comes to vision, which include light sensitivity but continue right into something not described in my book on sensory processing disorders.  Next week I'll get into the taste and smell senses, which are so intertwined it'd be silly to try to separate them entirely. 

Wednesday, June 6, 2018

Legwork and Life, week of 6/6/18

I feel kind of off this week.  Maybe it's the fact that my legs constantly feel like they're on the verge of getting pins and needles.  Maybe it's that I had a really exhausting Monday. 

I went to bed on Monday night, very stressed and upset from the day I'd had.  It was one of those "I can't possibly meet these deadlines" kind of days, where you beat yourself into trying to meet them anyway.  Then your boss comes and yells at you for not doing something perfectly while you're struggling along, and you just kind of feel awful.  (The actual situation is a bit too complex to describe properly here, so I'm giving an equivalent instead.)   When I finished for the night and went to bed, I noticed that one of my arms and both legs felt kind of like they were just about to fall asleep on me.  I guess kind of fuzzy?  But not a nice comfortable fuzzy, an uncomfortable "you're going to have pins and needles soon" feeling.

This was kind of uncomfortable for trying to fall asleep with, so I kept shifting my legs, but the weird feeling didn't go away.  Eventually I slept... and woke up with the legs still acting like that.  I felt a little clumsier overall yesterday, but went biking as usual and my muscles performed fine... but later that day I talked to a friend of mine and he seemed worried by my description, which alarmed me more than I was already.

So I ended up calling the chiropractor.  They didn't like the sound of what I described, and had me come in the same day to make sure I was okay.  Apparently my spine felt like being tetchy and rebelling against the the chiropractic work I'd had done on Monday, so they did another adjustment to hopefully put it back in line and make my legs stop feeling weird and gross.  But then I had to ice my back for a half hour, because vertebrae get less and less graceful about handling chiropractic adjustments the quicker you do them. Inflammation tends to result.  So, ice pack... or to be more precise, big bag of frozen peas.  I'm to keep an eye on the numbness situation, and if it's not better by this Monday, check in there again. 

In happier news, my old hairstylist-person is back in town!  I complained about her leaving several months ago, after she graduated her school and went off to pursue her dream job in Chicago.  This was in part because I hate change, and in part because I had gotten very fond of her and she's a very remarkable person.  She went off, though, and was gone for several months.  I'm... not really sure what specifically happened to bring her back here, but I couldn't manage to handle travel plans to visit her in Chicago, and I guess now I don't have to.  I suspect it's not a happy story, so this is not entirely happy news, but I'll be seeing her tomorrow for coffee and will be able to celebrate and/or commiserate with her.

This actually also brought up the awkward question as to what to do about my hair maintenance now.  She's still working, and still in the hair-beauty business, but while I'm happy to support her and be a customer to her new place, I also don't want to just... disappear on the student I've been having work on me since she left.  Fortunately, this problem has a time limit on it.  The student graduates in August, and is going back home to find a job.  Her home is over an hour away from where I live.  That is a very long way to drive when the process of making my hair blue takes 4+ hours.  So probably when the student's graduation happens, I'll simply bid her farewell and wish her luck, but not make plans to show up at her new workplace.  I feel kind of bad about it, but that's a lot of gas and time, and she personally knows that all too well. 

Lastly, thanks to a friend, I ran across a helpful website I'd forgotten about.  It's called myNoise, and it lets you listen to all kinds of sounds, from plain white noise to rain under a tent to a sailboat creaking in the waves while a thunderstorm rolls around you.  When I was in college, I ran across a very simple app for a web browser that did something like this, but only had six options.  I think it was around finals time, and I was so stressed that simply turning on the rain noise was a wonderful relief, like plunging a burning hand into a bucket of water.  They had a donation button, and the donation limit was $2.  I think I threw like 10 bucks at them (I donated 5 times) before I finished calming down from my fit of gratitude.

This site is a great deal more complicated, as you can kind of tell from the lengthiness of that last noise generator.  I'll probably donate to this website as well, now that I've downloaded the app on my tablet and will be able to bring the sound of the ocean, rain, and chimes with me wherever I go.  The app seems more limited, and most of the generators are locked behind in-app purchases, but you can buy them all for $12, so I'll probably do that.  Part of being an adult is recognizing that other people have to eat and pay rent also.  If you love something, you have to support it, or it might not be there any more someday.

Now if you'll excuse me, I'm going to go flop in bed and listen to the magical invisible rain that will never get me soaking wet, and give my anxiety disorder a pass for a few minutes. 

Monday, June 4, 2018

Reading the Research: Transgender Brains

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article explains the existence of trans people a bit better.  (Because a large percentage of autistic people, including myself, fall into the category of "gender nonconforming," this piece of research strikes me as rather important.)  Transgender people, most commonly, are people whose physical bodies don't match their gender identities.  So, a person born with ovaries and breasts (born with female sex parts) might feel, deeply, that they are a male person.  Their masculinity is a major part of their identity as a person, despite their biological parts.

This is a very uncomfortable place to be, and can cause severe distress, known as "gender dysphoria."  From the article: "Although GD (gender dysphoria) is rare, gender identity is an essential part of psychological health, and if unaddressed can lead to serious psychological issues."  Gender dysphoria is usually helped along by people who don't believe that it's possible to have a parts-brain mismatch, and insist that whatever parts you were born with, that's who you are and you should just deal with it.  Well, as it turns out, it's not that simple. 

Scientists in Europe did brain scans on teenagers who reported suffering gender dysphoria (as well as a control group of non-dysphoric teenagers).  The teenagers were exposed to stimuli and psychological tests that cause different reactions in typical male and female brains, and their brains' reactions were tracked with the scans.  The results?  The trans teenagers' brains tended to act like their preferred gender-identity's typical brain.  Apparently, the brain trumps external genitalia when it comes to gender identity. 

It is not yet known how soon in a child's life these brain differences become apparent to a scan, but I personally know of a child who recognized their sex/gender difference prior to the age of 10.  So there's a good chance it's a lot younger than the teenage years.  From the article, it sounds like these scientists will continue to follow this line of research.  I'll be curious to see what they discover, because I am also, by some definitions, trans. 

I was born into a body possessing XX chromosomes, and my body developed nearly flawlessly in that sense.  However, I have no idea what would occur if you put my brain into the same tests these teenagers took... because I'd personally be happiest if gender identity didn't ever apply to me.  I am what's sometimes termed "agender."  I don't consider myself particularly male or female.  I really don't fit well into feminine stereotypes: I don't like clothes, makeup, most kinds of shopping, accessories, socializing, home-making, or cooking.  But I also don't really fit most male stereotypes, either. 

I am... basically, just me.  And I'd pretty much just prefer people to just judge me by who I am, not what I look like or what parts I happen to have.  Perhaps if they put my brain into those scans, I would test as a combination of male and female, or maybe even not follow the patterns of either.  I am, after all, autistic, and that makes my brain unusual to begin with.  That being the case, it doesn't really surprise me that so many autistic people also identify as one or more of the letters in "LGBTQ+."

Friday, June 1, 2018

Sensory Processing Difficulties: Proprioception and Vestibular Senses (Part 2)

This is part 2 of a series on Sensory Processing Difficulties.  Part 1 was on the sense of touch.

Part 2 will cover the two senses we aren't taught about in school: proprioception and the vestibular sense.  These two senses, while not waxed about in any kind of poetic fashion by philosophers and artists of the past, do serve very important functions.

Just FYI...

A note, which I'll paraphrase from part 1 and then explain a bit more:

While I'll talk about these senses separately, you should keep in mind that a person can't process these senses separately, or turn off one if it's being bothersome.  All people experience all these senses at once.  The only reason you're not regularly overwhelmed by feeling where each of your limbs are in space, while smelling the odors of your house, hearing the shrieks of the neighbor's children playing outside, smelling the soap you used to wash your hands, tasting the last thing you ate, and feeling both the pull of gravity and the texture of whatever you're sitting on... is because our brains filter out all but the most relevant details.  Sometimes this filter doesn't work very well, but I'll explain about that later.

Proprio-what?

Proprioception (such a weird word) is your sense of where your arms, legs, and body are in space, and it relies on being able to understand feedback from sensors in your joints, ligaments, and muscles.  These sensors tell you what angle your arms and legs are at, whether any force is being applied to any of those areas, and where your limbs are at any given time.  When you reach behind you to shut a door, or move yourself through a dark area, you are relying on this sense alone to not bang your arms and legs into themselves, and any objects you remember in the area.  You also rely on it to use the correct amount of force to shut a door rather than slam it or leave it ajar. 

When this sense goes amiss, a person can't locate their arms and legs in space without looking at them.  You could find yourself regularly sliding out of your chair rather than sitting solidly in it.  Or tripping over your own two feet as you walk or run.  You might also grab things too roughly or softly, thus either breaking them or dropping them.  Children with difficulties in this area might avoid (or crave) jumping, crashing into things, pushing, pulling, bouncing, and hanging.  An otherwise mild-mannered child that always seems to be banging into others might not be aggressive, but rather lacking proprioception's body awareness.

About a year ago, I reviewed a book called The Reason I Jump, by Naoki Higashida.  I didn't comment on the title at the time, because I didn't want to spoil the answer to the implied question.  But in light of this particular topic: the essay that explained this answer involved this sense.  Mr. Higashida pretty clearly suffers from lack of body awareness.  His particular description was extremely poetic and very impressive, and I still recommend you read that book.  If nothing else because it gives you another viewpoint on from the autism spectrum, and one that doesn't overlap a whole lot with my own experience.

Pencils, Skates, and Origami

As for me, personally?  I think maybe a lessening of this sense might explain some of my innate clumsiness.  As a child, I tended to always look down when I walked.  This was because I tended to trip over my own feet, on apparently flat surfaces.  I knew this, and knew I'd have a better chance of placing my feet optimally if I simply looked where I was putting them.  This came with the added bonus of being able to see where to catch myself when I inevitably tripped anyway. 

As I grew, I got better at not tripping, and became more adept at catching myself before I fell.  This was in part due to taking up roller skating.  I started in the beginner's class, with lots of little children, but with time, effort, and many bruises, I became adept enough to skate on one foot, cross my feet over each other to do fancier tricks, and even perform simple jumps and spins.  I was eventually informed that I should be in the adult class, which helped me refine and stretch those abilities.  My instructor was a retired professional skater, whose high school daughters competed in the state competitions.  So while I would certainly never have made it into any of those competitions, I can safely say that his instruction was excellent.

Another proprioception-related task I had to learn to overcome was my fine motor clumsiness.  I think I still suffer some of that, particularly when I'm not paying attention.  I do seem to drop things and break things a great deal more regularly than my peers... But it's not as bad as it used to be, I think.

As a child, I tended to hold my pencil with a death grip.  This was noticeable because my hand would tend to cramp up, but also because I held the pencil wrong.  Children are taught to hold a pen with three fingers... 

To this day, I hold mine with four.


This is, as a rule, an inferior grip to the first, as it strains your hand more.  But for someone with clumsiness issues, adding the fourth finger stabilizes the pencil and allows for more control and accuracy.  So that was how I wrote, despite teachers trying to teach me otherwise, and it's how I write to this day.  The end result was darker marks on the paper, with occasional tears from pressing too hard.  (This is actually also a sign of a messed up proprioception in children, by the way.)

As an adult, I tried the three-finger grip out, and can now manage it without losing too much by way of speed.  But it's not comfortable or how I'm used to doing it, and since writing has become far less common, I see no need to change my habits.  I did work to overcome some of my fine motor difficulties, though... with another hobby: origami.

I'm almost 30, so it bears pointing out that when I was learning, you couldn't simply pull up videos on the Internet to teach you how to make this fold and do that technique.  Instead, I had books.  These books had the words "mountain fold" and "valley fold" and "bird base" and all manner of other artistic-not-immediately-helpful-to-a-small-child vocabulary.

So learning was a bit of a struggle, but I'm extremely stubborn, so after accidentally tearing, smashing, and otherwise destroying probably hundreds of squares of paper, I did actually learn the basics of the art.  Origami is an art of precision, particularly when you're working with specialized paper.  The closer your folds are to their destinations, and the thinner the creases, the better your final product.  This means you can manage to follow all the directions, yet still have a final product that doesn't look that great.  But it also means that practice really does make perfect.

I can now boast of being able to teach anyone how make a traditional Japanese crane, so long as they're patient and willing to put in the effort.  Also, I once pranked my second high school by scattering a thousand of these cranes, along with the wish that the place would become less of a toxic hellhole.  I kind of doubt I got my wish, but at least the prank was fun, and I really doubt they've found them all unless they've renovated their ceilings...



Vestibular Sense

The vestibular sense is also involved with movement, but instead of your joints, it's instead linked to your inner ear.  It's your sense of how fast you're going, whether you're accelerating, and the pull of gravity itself, which in turn affects your balance. Apparently this is registered by... what amounts to little hairs with protein crystals suspended on them, inside your inner ear.  It sounds really weird and random, but when you turn your head, the hairs move, pulling the crystals after them, and that movement is gauged by sensors inside the inner ear.

When you lean over to pick something off the ground, you're using your vestibular sense to counter-balance yourself so you don't tumble to the ground right after the object.  You also use this sense to figure out what position you're in, related to the pull of gravity.  After all, a standing position is relatively similar to a lying-down position... at least if you're in space.  With gravity, your inner ear tells you which way is down.

When this sense goes awry, all kinds of exciting and unfun things can ensue.  Your balance can go entirely out of whack.  Without the ability to sense the pull of gravity, you can over- or under-compensate for it, resulting in uncoordinated and clumsy movement, if not outright falling.  Stairs, ladders, and slides can become your worst nightmare... or your best friend, if your body craves that sensory input.  Motion sickness might be your constant companion, or you might never ever get motion sick even in circumstances that would make pretty much anyone else ill.

Most interestingly to me, apparently the vestibular sense also factors into your vision.  When a neurotypical person jumps or bounces up and down, their field of vision appears to remain relatively stable.  With a wonky vestibular sense, that is not the case.  So you can have a child perfectly able to read the blackboard or a computer screen, but not able to walk across the school room without banging into desks and classmates.  I guess, something like that accursed "shaky cam" technique that keeps making me miserable and confused while watching movies.

Personally, I think I mostly lucked out when it comes to this particular sense, sans the motion sickness aspect.  I don't particularly suffer oversensitivity to movement, and my vision complications are brain-related, not inner-ear-related.  I usually don't fall while leaning down to pick something up, and my sense of balance is remarkably good considering my proprioception-related limitations.

The motion sickness, though...  I don't recall getting very motion sick, ever, as a child.  I could even watch those enormous IMAX 3D screens in reasonable comfort (but my mom couldn't).  I didn't adore theme park rides, especially not roller coasters, but I could tolerate them.  If it got too bad, I'd simply shut my eyes, thus eliminating the most dizzying form of sensory input, and huddle until the ride was over.  It was still uncomfortable, but not intolerable.

Now?  Now I can get motion sick from things as simple as "riding in the back seat of a car."  It helps if I'm hungry.  Something about being hungry makes it exponentially more likely I'll get sick on a theme park ride or a car ride.  However, that naturally makes the fix just as basic: get off the ride or out of the car, and eat something simple.  I have no idea why this works.  Even with food freshly in my stomach, though, I no longer care for IMAX 3D movies, and tend to avoid most theme park rides. 

It's notable that this particular sense (in conjunction with others) is also used by some autistic people for calming down.  Dr. Temple Grandin, the foremost autistic speaker, includes spinning and rolling as forms of comfort.  There's a clip from the HBO movie where the actor playing her explains exactly this.  I... am not like that.  I don't really like spinning or rolling, and get dizzy at a regular rate, if not faster than usual.  This actually made learning those skating techniques a great deal harder, as a dizzy person is more likely to fall down than a stable person.

Summary

This week I've described the two "ignored" senses, proprioception and vestibular sense, and given you a basic idea of how they work, what it looks like when they work, and what it can look like when they don't work.  In addition, I've given you a few examples from my own life as an autistic person as to how these specifically play out.  Next week, I'll get into vision, the sense almost all of us take for granted.  I have a unique brain-eyeball communication problem that makes this sense extra fun.  Should be interesting!

Wednesday, May 30, 2018

Legwork and Life, week of 5/30/18

It's been a week, guess it's that time again.  I seem to be doing kind of okay this last week, so I guess it must've been a good week. 

There's been some progress on the church incident from a few weeks ago.  I talked with the church official I mentioned last week, and what he didn't do in communication prior,  he made up for when I went to discuss the matter on Thursday. 

So I ended up giving him an idea of what my specific diagnoses are, and how that plays out into needing accommodations at times.  We discussed the available side rooms, and he's going to elbow the budget team to see if we can get the service piped into the library, with an adjustable dial.  That would make it functionally the same as the living room, which was the room I'd been in.  That costs money, and they don't have a ton of it, but he'll do his best.

He also apologized on behalf of the church, which was thoughtful of him, though admittedly it cost him nothing.  More notably, he's going to talk to the church staff who was involved in the incident, and see if he can't get an apology from them. Finally, there's apparently a committee being formed around accessibility for many kinds of needs, and he's invited me to be a part of that committee.  I tend to be cautious about my time, so I told him to keep me in the loop about it.  Hopefully as more details emerge, I can make a better decision... or at least lend my feedback to whatever decisions this committee ends up making. 

In other news, Memorial Day happened.  My spouse, Chris, was home, which made for somewhat uncomfortable work time.  It's weird to have one person on vacation and the other having a normal work day.  We didn't do much, vacation-wise, but he did come with me to exercise, which also meant going out to lunch with my dad afterwards.  So that was nice. 

Chris having vacation and being around here during my work hours reminded me of something I've been asking myself a bit over the last year...  Namely, should I have vacations?  Technically, this blog keeps me busy for most of the week, but it only updates 3 days per week.  That makes me feel kind of lazy when it comes to taking days off, because it's not like it's a 40 hour week or anything.  But that said, even part time workers get national holidays off.  So it seems like I probably should have holidays off... but it's hard to convince myself of that. 

I can't truthfully say to myself that I wouldn't like to have a holiday, and not worry about a blog post on thus and such day (like say, Christmas)... but I worry that breaking my flawless update record will end in procrastination and the blog falling by the wayside.  Perhaps that's overzealous of me, but...  I guess I'll have to chew on the idea more.  One of the webcomic artists that I follow gives herself 6 sick days and 6 "relax" days per year.  Her webcomic updates twice a week, and probably takes hours longer to make than my blog posts do.  That philosophy seems like a nice, adult way to manage having a life and still keep yourself accountable, so I guess if I do adopt something, it'll probably look like that. 

The last thing that was salient this week was more in my "fun" sphere of things than in my work and socialization zone.  My spouse and I play an MMO together, and we wanted to do a particularly difficult part of the game.   But we couldn't find a good group of people interested in doing it.  A friend of ours in the guild, referred us to a particular group that we could try that difficult part of the game with.  They accepted us, and the group turned out to be extremely competent.  We completed the difficult content with... remarkable ease.  It was a really cool experience. 

It got me thinking.  These particular people play this MMO at a near-professional level.  They try (and succeed at) some of the hardest parts of the game, which require excellent reflexes, attention to detail, visual processing, coordination, and a host of other skills.  The fact that I was allowed to tag along, and actually mostly pulled my weight, really makes me happy.  Because I have shoddy visual processing and kind of meh reflexes, and I still managed to be pretty okay.  This is in part because I worked hard to improve those things, and in part because I mostly knew the content we were trying to run.  It also tells me that if I really wanted to be as good as those people, I probably could be.  Which is itself pretty cool. 

I really doubt I ever will be that good at the game, though.  Becoming that skilled requires a tax of a whole lot of time and energy, and I am short on both of those.  Also, becoming an elite gamer does not markedly make the world a better place, whereas educating about autism and disability issues... does.  Hopefully. 

Monday, May 28, 2018

Reading the Research: Deceitfulness

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article covers one unfortunate common side effect of autism: the tendency to not recognize when one is being lied to.  The study itself was relatively straightforward, simply having autistic people watch videos of people lying and not lying regarding a test.  People with autistic traits (but not a diagnosis) or with an ASD diagnosis were significantly less likely to recognize a liar.

This study is somewhat remarkable due to the fact that it also tested the general population for autistic traits as well as giving everyone the lie detection test.  Depending on how autism is defined, older people like myself, while definitely still "disabled" in some senses, may not actually qualify for the DSM-5 diagnosis at the current time.  Ironically, the disability aspect is often still there.  The difference is that we've learned so many adaptive strategies, we no longer seem autistic, and therefore the casual observer insists we must not qualify.  (This is a particularly common accusation for a verbal autistic adult to receive from a parent whose child does not speak, and does not currently blend into society at all.  Their assumption that their child and the autistic adult are fundamentally different is flawed, but that's another entry entirely.) 

The researchers suggest training as a way to handle the disparity between neurotypical lie detection abilities and autistic lie detection abilities.  Personally?  I think that'd be fascinating.  If someone would like to pinpoint the common traits that accompany lying, and make a video series that shows them visually and aurally, I'd watch the whole thing.  If it was well-made, I'd link it to every person I know who has autistic traits. 

The thing you have to keep in mind with stuff like this, though, is that lying is a recreational pastime in US culture.  The most famous example of this tendency is the dreaded question: "Does this dress make me look fat?"  The truthful answer, whatever that might be, is irrelevant.  The correct answer is the most soothing, reassuring version of "no" you can manage.  Extra bonus points if the dress is hideous, and you manage to redirect the person's attention to a different dress without upsetting them. 

Other common lies include the traditional response to "How are you?" ("Just fine, thanks!"), and the customer service standard goodbye ("Have a nice day!").  Like many autistic people, I dislike lying to people.  So when I'm in company I'm more comfortable with, I don't say "just fine, thanks" when asked how I'm doing.  I'll often default to something more like "just plugging along," which is less indicative of a positive mood.  If I know the company I'm in fairly well, I'm more likely to pause and try to give a truthful answer.  Which, given me, is usually a more negative one.  Hooray, low-grade depression. 

I actually get around the customer service "have a nice day" by saying "you too!" and actually meaning it.  The saying is that you can judge a person by how they treat waiters, customer service staff, and fast food workers.  I think that's true to a point, and I always try to keep in mind that those people are also people.  My hope is that they use their neurotypical superpowers to read my expression and tone, and recognize that I literally mean it.

With those three examples, knowing the person is lying to you is of dubious use.  So such training would probably need to emphasize the difference between cultural falsehoods/white lies, and more serious types of lies.  It should also describe how to make that judgement on the fly, and how to safely react if it's the latter type.  Generally speaking, you don't want to tell a human predator directly that you've spotted they're lying to you, how you spotted it, and that they should bugger off.  That would be the natural tendency for a lie-hating autistic person.  Instead, you want to make a polite excuse or lie to leave immediately, preferably in trusted company, and then do so. 

Even if the training they came up with didn't cover all of this, though, I'd still watch it.  I'd bet I'm still below the general population in my ability to recognize lies.  

Friday, May 25, 2018

Sensory Processing Difficulties: Part 1 (Touch)

(This is part 1 of a series on sensory processing difficulties.  While I'd initially assumed I could fit them all into one post, the post would unnecessarily long and I really don't want to bore you.  So bite-sized chunks it is!  Here's Part 2 on the vestibular and proprioception senses, part 3 about sight.)

Why Talk About This?

A book I'm reading talks about sensory over- and under-sensitivities in children, and how this is a distinct phenomenon from autism, but that it often goes with autism.  And recently there was an incident in church where a staff member shooed me out of the side room I was using to accommodate a sensory overload.  So I thought it might be interesting for you to have some time inside my skull when it comes to sensory issues in an adult autistic.

The book I'm reading calls for seven senses, rather than the traditional five, which is probably lowballing it, but as good a place to start as any.  The book points out, and I'll underline, that these seven senses are not separate input channels.  They are all processed at once, often several senses for each part of the brain that does the processing.  The autistic person does not get to try to turn off their sense of hearing because it's hurting them, but still leave the vision, touch, and taste senses active.  That isn't how it works.  It's all in the same place: the brain.  So you can distract the whole brain from the painful sensory experience, but you need to distract the whole brain.

One more very important note: all the reactions I'm going to describe to you are involuntary.  I literally do not control how my brain reacts to certain sounds, or to certain types of touch, or anything else I'll tell you about.  I did not choose to be the way I am, I simply...am.  The next time you see a child having a tantrum in a public place, keep in mind they might well be like me... just not as old and as well-practiced at handling their suffering in a socially-appropriate manner.

Many Kinds of Touch

Touch is the first and most basic sense.  But there many kinds: 
  • light touches, like someone brushing your arm, or the texture of grass, sand, or dirt.  This also encompasses having your hair brushed, washing your face, and textures felt in the mouth.  (This is the part of touch that most people with sensory issues have trouble with.)
  • deep pressure, like massage, bear hugs, rolling, bouncing, etc.  
  • vibration, like the feeling of touching a washer on spin cycle, or one of those battery-powered back massager devices.  
  • temperature, your hot and cold senses that spare you from both holding cold packs too long and burning your hand on the stove.
  • pain, which covers everything from a light scratch to broken bones.  
As a child, I couldn't stand having tags in the back of my shirts.  My poor mother had to painstakingly cut the tags out of every one of my shirts.  The same was true of my underwear, I believe.  This is a form of light touch sensitivity, and I continue to have difficulties with it to this day.

I no longer have to snip the tags in my shirts or undergarments, but sometimes when my spouse touches my arm lightly, in affection, it hurts instead of soothes.  The same is true with my back.  Since I got my hair cut short, my spouse will also pet and gently scritch my head.  The former is nice, the latter hurts after a while.  It's emotionally painful for both of us when I have to tell him to stop doing something affectionate because it hurts, but the other option is for him to be causing me physical pain while thinking he's being sweet and affectionate.  There really aren't good options here, is what I'm saying.  I try to be gentle and tactful about it, but I know it hurts him, and that hurts me.

Haircuts Are The Worst

Another way this touch sensitivity manifests is when I get my hair cut, or need to wear jewelry.  While I now tolerate tags, I do not take easily to wearing things around my neck.  And I really don't take kindly to having things put tightly around my neck.  This is most noticeable in my current life when I get my hair cut.

Haircutters tend to fasten a paper neck band around your neck, to keep the hair from getting down your shirt.  I can't stand that.  I have to put my hand to my throat to offset the nearly-unbearable sensation of choking and feeling trapped.  Having that extra sensory input from my fingers at my throat helps confuse the tightening feeling enough that I can tolerate it.  So instead of ripping the stupid piece of paper off and screaming at the poor haircutter, I can instead, seemingly calmly, sit through the application of the neck band. 

After the neck band stops tightening, I can then make myself learn to tolerate the feeling of having something around my neck... particularly if I don't move too much.  That lets my brain try to tune out the feeling as "irrelevant," which it's not great at, but it sometimes succeeds at. 

This unpleasantness has not, obviously, stopped me from getting my hair cut. (And dyed blue, check it out!)

...but it very much does make the process a lot more miserable than it would be otherwise.  Another way this light touch sensitivity manifests around haircuts is afterwards.  Even with a tight neckband, there's inevitably going to be some little bits of hair that escaped into your shirt or stuck to your neck.  Most people just brush these off in annoyance, and after a day or so, they're basically gone anyway.  I... have to go home and use a lint roller to get them off, and can think of little more than doing so until they're off.

If the house caught fire while I was doing this lint-roller hair-bits removal, I would take the freaking lint roller out of the house with me, forgetting the clothes I took off to get at all of my neck.  That's how bad it is.  I am almost invariably miserable when I get home from having a haircut, and don't stop being miserable until all the tiny hair-bits are gone and I've had some time to decompress from my misery.

All is Not Lost, Thankfully

It is possible to accustom oneself to things like this, by the way.  The book has suggestions for how to make this sort of thing a regular activity for children, but autistic adults like myself are kind of on our own unless we're involved in therapy for it.  Which isn't to say we can't do it ourselves... it's just difficult and not very intuitive.

As I type this, I am currently wrapped in a light blue, ridiculously soft and warm polyester blanket.  It's the kind that's almost like short, extremely soft, smooth fur.  My spouse noticed it in the store, and we were looking for a nice warm, blue blanket.  But when I first touched it, I immediately yanked my hand back in discomfort.  It was too soft!  My brain couldn't process the sensation, it was too overwhelming.  This startled my spouse into amusement, which annoyed me. 

I think I glowered at that silly blanket for a couple minutes, scowling as I made myself touch it over and over.  Just lightly at first, and not very much of it, and I still had to pull my hand back due to sensory overload.  But as I kept at it, I started to be able to handle the sensation.  It must have looked pretty silly, a grown woman scowling at a blanket and touching it repeatedly while her spouse stood by.  But nobody threw me out of the store for being extremely weird, so whatever.

We ended up buying the blanket after I was fairly sure I would be okay with it.  And now obviously, I am.  It still feels a little weird to me to touch with my hands, but it no longer overwhelms me, and the blanket lives by my computer chair to keep me warm when the basement is cold.  Which it usually is, so that blanket gets a lot of use.

Texture of food is another complication in this category.  It's not one I've paid a whole lot of attention to, but my spouse is actually pretty picky in some cases about what goes in his mouth.  I was an excessively picky eater when I was growing up.  It drove my mother to frustration quite often.  We ended up having to establish a list of foods I didn't have to eat if they were served to me.  Broccoli, cauliflower, brussels sprouts, and other strong-tasting vegetables tended to top that list.

I'd always assumed my dislike for foods was taste-based.  After all, many of those vegetables do taste pretty strong.  But it may not have been that simple.  I no longer need to have a very limited diet, and make a point of trying new foods as a matter of course.  But I may have to pay more attention to how those foods feel in my mouth.  I do enjoy just-barely-soaked cereal (mostly crunchy, with subtle hints of sogginess) and ice cream blended with M&Ms (which are mostly creamy with some crunch
/and/ subtle hints of sogginess).

All of the above has been about light pressure, and I'm sure if I gave it a week, I could think of more examples.  But that's only one part of touch, so I'd best move on.

Deep Pressure and Vibration

Deep pressure is what I usually advise my spouse to give me when his gentle touches on my arms hurt, or when he accidentally tickles me.  His actual response is usually to stop touching me entirely, which is kind of saddening, but understandable.  I'd much rather he press harder with the arm-touches, thus solidifying the sensation and making it more tolerable.

I do like massages, as a rule.  Not only do I suffer basic neck pain, the deep pressure type of touch is very easy to pinpoint and process.  So unless it actively hurts something, it's definitely the way to go.  I used to give bear hugs a lot as a child.  I have no idea if that was just because I was odd, or because I liked the sensory feedback of giving a tight hug.  Usually people protested, though, so I think I eventually stopped.

I also bounce my leg when nervous.  This is actually a relatively common nervous habit for all kinds of people.  I actually taught myself how to bounce one leg quickly and slightly, mimicking a friend of mine who had hypertension at the time.  (He actually did both legs at the same time, but one leg was hard enough to learn that I stopped there.)  It became a habit, and now I do it when I'm seated and anxious.  So, often. 

Vibration type sensory input is relatively scarce in modern life.  When I've run across it, I haven't really had much issue with it, beyond it making my hands numb after a minute or two.  I'm not actually sure if that's a common experience or not, but either way, I tend not to hold onto the washer or a battery-powered back massager much.

Temperature

I do seem to be more sensitive to hot things than the average person.  When I was younger, I kind of figured that was probably just the fact that I was young, compared to the people I tended to talk to, who weren't.  As you age, you gain calluses on your hands, and the nerves that sense temperature take damage over time, which desensitizes you somewhat.  So something that's a little too hot for comfort to a small child would be just fine to a normal adult.  I would often complain about water being too hot, when my mother thought it was just fine. 

This comes up in my current life when I'm trying to draw a comfortable bath, actually.  I'm still trying to figure out how much boiling water to add to my tub before filling the rest with hot/lukewarm water from the water heater.  Too hot, and I sweat and am uncomfortable in the tub.  Too cold, and it's not relaxing.  

Speaking of too cold, I'm not really sure how my cold sensitivity lines up with everyone else's, but I have very little tolerance for carrying cold things in my bare hands.  And if my whole body gets cold, I get miserable.  Like, pathetically miserable.  "Small child whining and sulking" miserable.  I have very little control over this, which is why I really try not to let myself get that cold, ever.  The last few times it happened, years ago at this point, I felt very stupid and embarrassed as soon as I warmed up.  But not 'til then.  

I had always kind of assumed that was a PTSD-style reaction to getting chilled down to my bones in high school, when I was on a rowing team and the coach sent us out half an hour too early... in 40 degree weather... and the rain.  So we sat out on the river for about an hour, slowly getting colder and colder, until the race actually began.  At which point we rowed on cold muscles and did not do terribly well.  

My parents took me back to their car after the race, had me take off most of my clothes, and turned the heat on full blast.  It took an entire hour of that to warm me back up.  It was a pretty awful experience and I resent that coach to this day for that incident and her general treatment of me and the team... which I think is quite fair, frankly.  But maybe it's not the whole story, I dunno.  

What A Pain

Pain is a complicated one.  There's two factors to how a person deals with pain.  There's your "pain threshold" which is the level of pain you tolerate, objectively, before recognizing it as pain.  And then there's your pain tolerance, which is how well you tolerate pain overall.  Someone with a high pain threshold and tolerance would seem like an action hero, walking away after breaking bones and seeming not to care.  Someone with low tolerance and low threshold would be just the opposite, complaining of small hurts as if they were much worse than they are.  The words "wuss" and "pansy" are usually used to describe these people, which is kind of cruel when they're experiencing those hurts as much worse than someone else would. 

Autistic people, and others with eccentricities in this form of touch, may have one of those two examples above... or they may be in the weird spot where they have a low pain threshold but a high pain tolerance... so they might easily recognize their foot is hurt, but not recognize that the bone is, in fact, broken, and they need to go to the hospital immediately.  They may just assume it will heal over time, as most injuries do, and if they just leave it alone, it will be fine.  This is markedly unfortunate when broken bones and more serious injuries are involved.

Personally?  I've never broken a bone, beyond a hairline fracture in my skull when I was 1 or 2 years old.  I don't remember that, so it's not terribly useful data.  The closest I've gotten to a broken bone was a few years back, and it's the only semi-major incident I can recall.  

So I have these shelves that are actually closet doors, separated by cinder blocks.  They're great, and hold all sorts of things... but at the time I'd thought it would be okay to put my 20 pound weights on the shelf.  It was fine for months... until I leaned on the shelf juuuuust the wrong way while getting out of bed at 2am.  

The shelf overturned, and its contents fell on my foot.  This included the 20 pound weight, which unfortunately managed to catch some decorative spear-like objects on the way down.  The spear-like objects were driven into the top of my foot by the 20 pound weight.  It being 2am, I was rather foggy, but I retained enough coherence to explain what had happened to my startled spouse, go to the bathroom, clean out the injury, put a bandaid on, use the bathroom, and go back to bed.  

Anyone with basic medical knowledge can probably guess what happened next.  I woke up with my foot in a small puddle of blood, within an hour.  So after that, I cleaned it out again and made sure it had stopped bleeding before I taped it up (with gauze and medical tape this time, not a bandaid).  

I'm not honestly sure whether my inability to assess the damage was simply that I was extremely tired, or because my pain tolerance is higher than average.  I'll let you know if I have any other exciting incidents that reveal more...  

What I'm Not Talking About

I am, as I've repeatedly pointed out in this post, an adult with a spouse.  That means there are some kinds of touch that I haven't discussed here.  Sex is its own kind of complicated, but you can probably guess from the things mentioned above that it's more complicated for me than it is for any given person.  I don't know if my blog has a rating, like PG-13 or whatever, but I do not, as of yet, feel terribly comfortable discussing my sex life on this blog.  

If that changes, I expect the resulting posts would probably be useful to adults on the autism spectrum, as well as parents needing to teach sex ed to their children.  It's not that I particularly feel like sex is shameful, like some branches of the Christian church preach, or that I feel like everyone should be private about their sex lives.  I, personally, just do not feel comfortable discussing it right now.  Sorry/You're welcome, pick whichever response suits you better.  

Summary

So this week I've given a rundown on what kinds of touch exist, and a number of examples as to how my body deals (abnormally) with these categories.  Like most people with touch sensitivity, I mostly suffer difficulties with aspects of light touch.  This affects my relationship with my spouse (negatively), my experience with haircuts (very negatively), and possibly my experience of food (positively now, negatively in the past).  

Next week I'll deal with what some people consider facets of touch: proprioception and vestibular senses.  Proprioception is your sense of where your arms, legs, and body are in space, and it relies on being able to understand feedback from your joints.  The vestibular sense is linked to your inner ear.  It's your sense of how fast you're going, whether you're accelerating, and the pull of gravity itself, which in turn affects your balance.  These two senses are the two excluded from the "standard 5 senses," but they're extremely important.  Without them, nobody would ever manage to play sports with any kind of coordination.

Wednesday, May 23, 2018

Legwork and Life, week of 5/23/18

This week "feels" like it was a balanced week, but honestly, in review, I think it was probably more good than bad.

The church incident I related last week, with the being shooed out of my accommodation area, is going to be reviewed by a church official I'm familiar with.  Actually, it's the same person that did my premarital counseling... because that's pretty much the only "office staff" person I feel sufficiently familiar with to relate my situation.  I'm somewhat annoyed that the response was very last-minute, and the mediation for the incident is going to have to wait until Thursday morning... but I'm also fairly sure this particular staff member is remarkably busy with other facets of the church life, and the fact that they're trying to fit me into the week at all is probably a stretch for them.

So meh.  Grumpy about the whole thing, but you do have to be reasonable about others' time and needs.  Speaking of others's needs, one of my readers who attends the same church stopped me on Sunday to express her support and relate that sometimes she has similar sensory problems.  I was rather startled, actually, as I usually don't hear from my readers much, and one of my strongest, most enduring life lessons has been: "You are utterly alone, including your specific problems."  So that was a really heartening moment in an otherwise disheartening day.

Another highlight from the last week was going to the farm market and a store called The Cheese Lady with Chris and my mother.  It wasn't the prettiest day for it, but we were hoping to pick up some meat from the humane farm that sells there, and snag some fresh vegetables and nice, Mom-friendly cheese.  Sadly, the humane meat farm was just leaving as we arrived, but the rest of the farm market provided lovely, inexpensive produce.  There was a lot of asparagus (blech), but also things like fancy lettuces and other greens, potatoes of many colors, berries, and a truly astonishing number of fresh flowers or potted flowers.

I do kind of wish we'd get to the farm market more often.  Their produce tends to last so much better  than the stuff from the store.  But I guess part of the problem is the unpredictability of the vendors, and the fact that it's not one-stop-shopping the way Meijer is.  Also it's not a 24 hour enterprise, and Meijer is.  Truly, I am ridiculously spoiled.

Anyway, the Cheese Lady had no disappointments.  With over a dozen each of sheep and goat cheeses, there was plenty to choose from... and despite that I need to be cutting down on dairy, I did indulge in my favorite cow-milk cheddar. It's just so ridiculously good.  Mom was able to find a selection of cheeses to suit her diet, which included at least one that should be good on pizza.  So that's fun.  It's annoyingly hard to find foods she can eat without having to be very careful, but I think this place might be okay for that.

My Monday evening got shot by getting my blue hair redone, and then cut nice and short.  These trips almost invariably take hours, and I'm really starting to wonder how long I have the patience for it.  Besides taking literally 5 hours at present, the process involves breathing bleach and harsh chemicals while they sit in my hair, and putting up with the loud noises that accompany the functioning cosmetology school (screeching chairs, loud music, chatter all around).

The crowning awful part, though, is common to any short hair haircuts... the process of trying to get all the little pieces of hair off yourself afterwards.  While most people can probably just brush themselves off a bit and ignore the rest until it goes away... I get home, shed my shirt and top clothes, and proceed directly to the bathroom, where I have to use a lint roller to get all the tiny hair-bits off myself.  They itch abominably and drive me nuts until I get them off.  After that's done, I shove my head over the sink and proceed to ruffle my hair until it stops raining tiny blue hair-bits.  This can take a while.

Normally, haircutters tie a band around your throat, in addition to the cape, to keep the hair from getting down your shirt.  And they did do that here.  But they didn't put it on tightly, because they know I have problems having stuff tightly around my neck.  Like the itchy hair-bits, that also drives me nuts.  I'm sure there's a solution of some kind, like a reverse cone of shame for dogs, or something I could hold at my neck rather than having it tied there... but I haven't an engineer to come up with one, and I'm not sure it'd be allowed in the school even if I did have one.  So in the meantime, I tend to end all my haircut/color appointments worn out and miserable.  But hey, now I'm set for like 7 weeks, so that's good.  I did get some good progress on reading a book to review for this Friday, so it's not like I wasted any of the time, either.

In happier news, I'm well on my way to having a successful bath experience.  I did try my pot-on-the-stove-heated water idea again, and this time I managed to get the bath water to "maybe 5 degrees too hot" instead of "scalding."  Much more comfortable.  I used the jets again, and added some bath salts.  It was a pretty nice experience... until the jets stopped and I noticed the water was all full of tub scum.  I'd hoped I'd gotten rid of that after cleaning it a few times, but apparently not.  So that was gross.  It didn't entirely ruin the bath, but it was an unpleasant note to end on.

As I didn't want that to be the norm for my baths, I decided to research how one cleans a hot tub... and it turns out you can usually just fill the silly thing, add bleach, turn on the jets, and walk away.  So that's what I did.  I already had bleach in the house for use with the washer (which you should clean once a month by running an empty wash cycle and adding bleach), so I simply poured about a third of the container into the tub as it was filling.

Somewhat sillilly, the bleach proceeded to foam up a whole bunch, resembling nothing so much as a death-bubble bath.  I resisted the urge to play with the foam... but it really did look inviting.  But of course the water was ice cold, and the foam smelled like bleach.  Also, chemical burns are definitely not in style right now.  Anyway, after that had finished cycling, the tub had to be drained and then refilled with clean water, because bleach baths are never the answer.

Hopefully sometime this week I'll get to try the tub again, and this time it won't have scum in the water, and the temperature will be closer to "just right."  I'm looking forward to it.  

Monday, May 21, 2018

Reading the Research: Towards Universal Communication

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article amused me because I recently got annoyed at the proliferation of emojis in modern text conversations, but this usage of them serves to unequivocally clarify communication, rather than complicate it.  The idea was to make a universal "scale" for ranking things like foods or experiences.  Using emojis, the scale would be useful in any culture where smiles mean "good" and frowns mean "bad."  Because of the historical similarities in human psychology and the Westernization of the world, that is almost all of them.

The scale looks like this, and the comment's textual explanation of the scale is probably entirely unnecessary:

Most bad <----Bad------Kinda Bad-----OK---Kinda Good---Good----> Most Good


The researchers were really more going for a scale useful in any culture, regardless of language, worldwide, but this scale meant to rate products for businesses might also find a use for people with communication and language disabilities.  For example, if a parent wants to gauge a kid's mood, or get a sense for their very favorite foods, they could use this scale to get a more nuanced response than simply "good," "OK" or "bad."  It's a seven point scale, and the testing the researchers have done so far is consistent across age ranges in children. 

Personally, I think it'd probably be helpful to teach all children to identify their moods based on something a bit more complicated than "good" "OK" and "bad."  But maybe they automatically do that after a certain point in development, particularly now that emojis are so widespread.  I don't think I made the differentiation ever, growing up.  And unfortunately the answer to "how am I feeling?" was almost invariably "bad." It could have been the third on the left (kinda bad), there, instead of the leftmost (absolutely awful).  Maybe, even, with that graphic for "OK," I might've chosen that some days. 

Then, too, it's helpful for working with a child to know if a food is their most favorite food ever, or whether they just sort of like it.  Since the children in the test used the entire scale to rate their experiences and opinions on foods, it would likely be similarly helpful for any child.  Also, any adult with communication difficulties might make use of this scale to quickly give a nuanced opinion on a proposed course of action, a food, or their mood at the moment.

I'll be curious to see how this develops, and whether it makes it into educational systems or not.  I'd certainly lobby for it to do so.

Friday, May 18, 2018

Book Review: All About IEPs

Wrightslaw: All About IEPs is a comprehensive guidebook to the laws and regulations around Individualized Education Plans.  As most autistic children in the US end up with an IEP, and it's one of the most common problems I hear about from parents with autistic children, this seemed like a fortuitous find.  And it was!

First thing: don't be worried about the readability of this book.  I tend to mentally prepare myself for exhaustion when I see hints that lawyers were involved in writing something I'm about to read... but despite the law-firm-sounding name, Wrightslaw has actually put together a fairly plainspeak guide.  Normally one can expect a certain level of...  fine print, I guess?  Evasiveness. And just in general, a lack of clarity.  The authors of this book clearly made a point of avoiding that convention in favor of plainer answers, as much as possible.  I strongly approve.  I get very tired of trying to sort through Legalese, as I call it.  I much prefer simple, concise, clear wording.

My second major impression of this book's contents is pleasant surprise.  Generally when one mentions "education" I think of academics.  But whoever wrote the laws governing IEPs was apparently very aware of how truly different one child can be from another.  As such, IEPs can include everything from transportation to therapy to assistive technology.  From the stories I'd heard, I kind of assumed the IEP was only meant to help a child learn math, reading, writing, etc.  But in fact, if deemed appropriate and necessary for the child's development, the school can provide things like ABA therapy, social skills groups, a wheelchair, or even a laptop for taking notes on.

I had no idea so many things were covered under the law, and it's flatly astonishing to know that someone (probably many someones) gave so much thought and concern to a population that most people wish would just disappear.  Whoever wrote those laws was exceptionally forward-thinking.  Normally people love to put special-needs children into little categorical boxes and say, "You need this because you're this, and you don't need that because you're this."  Under the set of laws we have currently, it's illegal for schools to do that.  Instead, they are required to examine the child's specific needs, strengths, and weaknesses, and make a plan based on those things.  That's the "Individualized" in "Individualized Education Plan."

Naturally, no matter how well-written the law, there will be people trying to bend it this way and that to avoid expense, effort, and time.  Which is why this book makes a point of answering a lot of commonly asked questions, grouped into 14 different subjects.  Topics included in this book are: how to write a good IEP, who's included in the IEP team, what kinds of services can be included in an IEP, transition services, how to resolve disputes with the school, and even what things to do when you're transferring schools.

While this wasn't the most riveting book I've ever read, it did answer pretty much every question about IEPs that I've ever heard from a confused parent, and a lot more besides.  It even makes the point of telling you when laws may differ by the state, and prompts you to do research of your own.  There are also links to additional resources interspersed in the pages, such as a comprehensive list of all the services and accommodations you could ask for in an IEP, sample letters to a school regarding a particular issue, and checklists to photocopy and take with you to IEP meetings.

After reading this book, I kind of wonder what my IEP would have looked like, if I'd had one.  I didn't really struggle academically, save for a few subjects I really didn't like or care about.  But if the education includes appropriate development...  the IEP would probably have to have something about reducing my anger issues in middle school.  Maybe emotions recognition and management training?  I still find that somewhat challenging, but I think I'm improving.  And perhaps something to help with my chronic anxiety and depression.  I bet that last one would've been a headache and half, though, both for my parents trying to fight for it, and for me having to sit through it.  I'm also not sure I would have appreciated it, at the time.  I was pretty set on being left alone in middle school and high school.  Of course, perhaps having a therapist or someone I knew could be trusted to help me help myself might have changed that.  I have no idea.

Read This Book If

You're a parent of a special-needs child, or an advocate for one, and you're at any stage of your child's education.  Usually the books I review don't write this section themselves, but the authors clearly knew their audience was limited in this case.  They do mention that teachers and school officials might also find this book helpful, and I concur... but the questions they answer are almost invariably from the parents' point of view.  As guides go, this one is excellent: both comprehensive and concise, with enough resources to be helpful, but not so many as to be overwhelming.  

Wednesday, May 16, 2018

Legwork and Life, week of 5/16/18

This week was definitely another mix of good and bad.

The bad, mainly, was that I spent about three days in near-complete misery.   About once a month, I bitterly regret having two X chromosomes instead of an X and a Y chromosome.  This regret (and the suffering that sparks it) tends to last about a day.  Sometimes a day and a half.  In recent months, the amount of time has gone up.  I hadn't really noticed the pain ramping up alongside it, but...  then I was a grump for several days before my period started... and then in blinding pain once it started.

I'm generally not a "stay in bed" sort of person when it comes to being ill.  I prefer to be actively trying to mitigate my misery, keeping hydrated, eating good food, or at least getting some work done with activities to do while sick.  That was not an option for the very first day.  It was pretty much lie in bed or lie in bed.  Every movement hurt.

The only odd factor out in all of this was my dairy consumption.  I'd been eating more dairy in recent months due to stress.  But other than that, I seemed pretty much on track for having less awful periods. A friend of mine pointed out yesterday that dairy tends to include estrogen and growth hormones, because of the focus on milk production.  So maybe that's it.  I really hope that's it, because this really needs to not happen again.

The other major shoddy point this week happened Sunday morning, after most of the agony of my period had subsided.  I went to church, as I always do, but found the main church service too loud and painful to properly worship in.  My light and sound sensitivities were acting up.  When this happens, I self-accommodate by going to a side room where the service was piped in, but the volume could be adjusted, and the lights dimmed.  All was going well, until halfway through the sermon, one of the facility staff walked in and told me I should "consider vacating the room because others want to use it." 

I was confused, naturally.  Although I'd been tempted, in the past, to put up a sign saying "sensory-friendly church," I never had.  People wandered in and through the room with annoying frequency, and I didn't stop them or even say anything.  I just wanted to be allowed to worship.  When I mentioned all of that, the staff informed me that a nursing mother wanted to use the room, and didn't care to do so in my presence.  And then underlined that I should "consider others' needs." 

So, basically, I got politely chased out of my own church.  Or to be more precise, I left when it became clear that my reasons for being there weren't important to the staff, and there was nowhere else for me to go.  I spent the rest of the church service crying in the car while I composed an email to the staff who had wronged me. 

Their response came in at the tail end of the day, and could basically be summarized as, "This isn't my fault, so don't be mad at me."  I am, needless to say, exceedingly disappointed.  I let them know that I had just as much right to be using that room as anyone else, particularly considering the room's accommodations, and told them there would be no repeats of the day's events.  Which I hope they will understand as, "You and your guilt trip can bugger right off next time." 

I'm still fairly upset about the whole thing.  My spouse and I contribute financially to the church, and I volunteer my time and effort on a very regular basis to support the church's functioning.  I run the sound board once a month, and every week in the winter, I clear the snow off the solar panels.  I may not be listed as a member of the church, but I certainly do sufficient work to count as someone that should matter... and really, even if I didn't... I'm disabled, and Jesus loved the weakest among humanity (the poor, the exiles, and the children) most.  This particular church, which has a thriving set of programs to help refugees and immigrants, should do better than this.

I kept the original correspondence between myself and the staff member at fault simply between us, as I'd rather hoped they would recognize how immensely cruel and thoughtless they'd been if I explained my position.  So far, they've disappointed me.  I suppose if I'm still angry about it by next Sunday, I'll speak to the minister of congregational life about the matter.  

That was, thankfully, the last crappy thing that happened this week.  After I finished crying and sending the email to the thoughtless staff, my spouse and I went off to a special Mothers' Day brunch at a fancy restaurant.  The food was good, and we got to see my mother, my grandmother, and my dad.  I had to really strain to not let the storm of hurt and anger I was feeling ruin the brunch, but I think I did okay. 

After the brunch, there was a really unusual but fun outing.  A friend of mine had gotten ahold of some tickets to a symphony orchestra performance, specifically a performance of the music of John Williams.  This composer is best known for his work in Star Wars, Harry Potter, and Indiana Jones, but he's done tons of other things, also.  So the concert was various pieces he wrote, performed live by the local symphony orchestra.  Between getting to see my friend, the excellence of the music, and the excellence of the performers, I had a pretty good time.  I did have to resort to earplugs.  But after the morning I'd had, that was kind of inevitable. 

There's one more piece of good news to relate.  I can't remember if I've mentioned it on the blog, but my house came with a big bathtub, with jets.  I was initially very much looking forward to using this tub, because it's actually large enough for me to relax in.  When I tried it, though, I found out that our water heater is not spacious enough to actually fill the whole tub... and the end result is a lukewarm tub.  Not really suitable for a long bath.  Or even a short one.

After boiling some potatoes in our largest pot, I realized that I might be able to offset the problem.  I simply needed to use that same massive pot, boil a lot of water in it, and add that water to the tub.  On Monday, I tried just that.  It worked!  Actually, I majorly overdid it, and the water was too hot to be enjoyed, even after adding tons of cold water.  But that is a much more manageable problem than replacing the entire water heater.  So once I figure out the right balance for optimal water temperature, I should be good to enjoy hot baths whenever I want them!  I'm excited.