Monday, July 30, 2018

Reading the Research: Friendships and Globalism

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 doubles as a fyi for my generation and younger, and a comfort to the older generations.  It's a discussion of friendship and how distance affects it, specifically that it's still hugely important.  The article is the result of a 16 month study based on over 1.7 million Twitter users.  It seems that even with large and varied social networks, stretching beyond their home areas, these people are still interacting mostly with people near home.

The fyi I think is here for my generation and younger is: just because you have a widespread, varied social media presence doesn't mean you have a solid set of friends/acquaintances.  If you don't have friends you see on a regular basis, then maybe you should think about whether you're getting the social support most humans need for optimal functioning.  While I think most people know this, I feel like it might bear saying to younger people, and those who aren't all that great at measuring how they're feeling. 

The comfort for the older generations is this: clearly, the rise of social media hasn't destroyed local communities and in-person social interaction.  If it had, people would likely not be bothering to spend time with nearby people, when there are so many interesting other people further away.  People are becoming more globally minded, but they're not eschewing opportunities to interact in real life with people because of it.

I do think globalization, as they call it, is a good thing overall.  In generations past, it was all too easy to be entirely unaware of world events, or even regional events in a region that wasn't yours.  But if you look at the maps in the article, people from the four cities kept tabs on regions of the country well beyond their own.  And while this study limited itself to US borders, I have friends who casually talk about their acquaintances in Southeast Asia, and a friend who married a guy from Thailand.  On a personal note, my first friend (who actually merited the word) is from England.  And on my text-based computer game, I sometimes play with a girl from the Pacific Islands.  Her English was sufficiently good that I figured she was just a kid... and she is... but she's also something like 16 hours different than my local time.

This is, honestly, really cool to me.  We all share this world, and the more acquainted with each other we are, the more we consider each other human and "like me."  The less "other"ing that occurs, the better, in my opinion.  The more differences we accept as normal, the easier it is for autistic people and others with disabilities to be considered "human like me."  Also, ideally, the fewer wars we all get into, the less racism, class-ism, even age-ism, maybe. 

Friday, July 27, 2018

Worth Your Read: The Meaning of Neurodiversity

I, like the author of this post, have come across this tendency to misinterpret what exactly neurodiversity is.

In brief: Neurodiverse people (people whose brains developed differently) are still people.  People, all people, deserve their rights, the presumption of competence, and the tools to make their lives the best they can be.  If that requires accommodations, those should be made available.  Neurodiverse lives may not look like neurotypical lives, and may involve disabilities that must be managed, but these lives are just as valid and matter just as much as neurotypical lives.

There is this tendency to assume a person is only a success if their life looks like a "normal" neurotypical life.  Which is to say, "graduate high school, go to college, get a good job, date, marry, get a house, have kids, grow old, and finally die."  Funnily enough, this proscribed path of life doesn't even fit neurotypical people, often.  So why shoehorn people so markedly different from the norm into that path?  If they want to pursue all that, let them.  If not, maybe try to figure out what their personal ideal life would be like, taking into account their needs.

Am I more of a valid person because I graduated college, married a good man, and bought a house together?  Am I less of a valid person because I probably won't ever have kids, suffer from depression and anxiety, and quite possibly will never hold another 40 hour a week job? 

Wednesday, July 25, 2018

Legwork and Life, week of 7/25/18

This week, my brother, sister-in-law, and both their kids are in town visiting.  My schedule has thus been a little topsy-turvy.  I still really have no idea what I'm supposed to do with the kids.  This is one of those hidden curriculum things I just... never learned.  I think most people get to draw on their knowledge of how they played as a kid, but I really didn't get along with my peers when I was little, and tended to read books more than anything else.  Other than answering questions that are asked of me, and trying to smile properly at both children, I've mostly been an uncomfortable near-non-entity when it comes to my niece and nephew.

The perils of being on the Wrong Planet, I guess.  Hopefully they won't hold it against me, any of them.  I'm not really sure how much my brother and sister-in-law have taught their children about neurodiversity.  I can't imagine it's a huge priority, with all the things going on in their lives.  Regardless, it's nice to see them, and thoughtful of them to make this trip up, because we won't see them for Christmas or Thanksgiving this year.  Traveling is really difficult with small children. 

On the exercise front, I don't feel quite so tired and low-energy in the mornings any more.  This is good, because biking takes energy.  I'd been kind of skimping on the distance for Tuesday mornings, because after getting up the final hill and coming face to face with the busy street, I mostly just don't feel like contending with the traffic to go further.  I think I might alter my Tuesday route to take myself through the park rather than go up the hill immediately.  That route would let me avoid basically all of the traffic, while still letting me play Pokemon GO a little  and get to enjoy the downhill on the way home.

There's precious little I enjoy about exercise.  But hitting a good downhill with a lot of speed, with the sun shining and blue in the sky, is actually something I do enjoy.  Also enjoyable, biking tends to keep you going fast enough that the mosquitoes don't get you.  I still have bites on my legs and arms, but I'm pretty sure that's because bitey things got into the house, not because things are still managing to get me at 10+ mph.  The final thing I enjoy about biking is that I am, so far, the fastest thing on the trail I frequent.  I feel slightly bad about liking that, but honestly, it means I only have seconds in which I might have to interact with people or exchange awkward glances.  After that I'm past them.  I take extra care to make sure I don't scare people as I pass them, and stay well to whichever side I'm on so as not to crowd the other people. 

My physiology, I personally think, makes me unsuited for pretty much every type of exercise except biking.  My great strength is in my legs, which are beefy due to genetics and the fact that they have to carry me around.  So one would think that jogging would be a good plan.  But I gave jogging a really good go in college, and failed to get any better at it.  And it's really, really disheartening to be the slowest person of all, even slower than the other slowest person in the class.  And while they improved, I didn't.  I also feel somewhat vulnerable to both human predators and biting insects while walking or running, so that's really not ideal.

It would be nice if those things weren't the case, though, because you really can't play Pokemon GO while you bike.  You need your hands to steer the bike and help you balance, and you can't be using one or both of them to play the game while you do that.  So when I bring that game along, I have to stop and get off my bike every time I want to play.  If I was jogging, I could literally just jog in place while I did the little tasks the game wants you to do, and then continue on, no problem.

On the food front, I've thrown together something easy to break my fasting with: trail mix, comprised only of golden raisins and tree nuts.  I've been reading a lot of things about how tree nuts are great for brain health, so I tried snacking on them months ago.  It went okay, but I got tired of them.  About a week ago, I bought a bag of trail mix last week to stand in for dinner.  Liked it a lot, but it was mostly peanuts and knockoff M&Ms.  I figured I could do better.  So now, in theory, I have. 

On a very much healthier note, I think my craving for sugary foods and high GI foods is decreasing.   This is excellent, because they're probably the reason why I'm not losing weight.  The three components for someone like me to lose weight are: eating plenty of vegetables and some fruit, getting movement and exercise, and managing sugar intake.  I have the first two going reasonably well, but the lattermost is... challenging.  Almost everything that tastes delicious and is quick to eat is high GI or flatly full of sugar. 

Monday, July 23, 2018

Reading the Research: Virtual Reality

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 talks about an early example of what I, quite frankly, suspect will be the future of therapy, job training, and schooling: virtual environments.  The program is called Charisma, which is a rebranding of the more clinical previous name (Virtual Reality Social Cognition Training).  If you watch the introductory video on Youtube, you'll see it's rather basic as far as virtual reality graphics go.  Compare what you see in the movie to this screenshot from a recent video game, and you'll see what I mean. 

That simplicity is actually a good thing.  One of the major pitfalls of learning how to interact with people is having to process their expressions and body language in real time, while you're handling the verbal component.  It's a lot of information to take in, and since we don't necessarily know which bits to prune out, it all comes through.  Every bit of hair, every wrinkle in the face, every glance the speaker makes (most glances are irrelevant to a conversation, but some aren't!), it all comes to us in a rush.  Some of us handle it better than others, but at worst?  Every single movement comes through with a giant question mark (what does this mean?) and the expectation that we'll already know what it means.

This more simplistic virtual reality pares down the detail a person can focus on, while leaving, as far as I can tell, the most important parts: eye movements, body language, and facial expressions.  With less detail to process, the autistic person can then focus on both tasks at once: reading the body language and processing the actual verbal conversation.

If you're familiar with the higher rate of anime-lovers in the autistic community, this is off a similar principle.  Japanese animation (anime) is not like classical American cartoons.  Rather than confine itself to comedy and slapstick humor, anime stretches to all genres.  Mystery to science fiction to classical literature to period pieces, it's all there.  There's stuff for kids, but there're also things that handle very serious, adult subjects, and everything in between.  It's a really robust art form, and I'm kind of sorry I've stopped watching it.

But the main of it is that while the subjects can cater to a mature audience, it's still animated.  The faces are simpler.  There are visual shorthands to help you understand what the characters are feeling.  It's everything TV is, but easier to understand.

So, with that simpler style, autistic people can practice their social skills, and learn work skills, inside this virtual environment, without as much potential handicapping from the complications of the real world.  As a population, we tend to be more comfortable on the Internet, and in video games, than in the real world anyway, because it's harder to automatically judge someone on their social skills when all you have to work with is lines of text, or the actions of an avatar.  That means our thoughts are more likely to be listened to, rather than dismissed out of hand.

So, creating a video game environment that teaches interactions?  One that teaches job skills?  I can almost guarantee such a thing would benefit more than simply autistic people.  If, as I suspect, virtual reality takes off in the next decade or two, things like this will likely become commonplace.  Sick as a dog, but don't want to miss your lecture or get everyone else sick?  Stay at home and attend class virtually.

There's a lot to be said for building confidence in autistic people, as well.  After a certain point, it starts to become clear to many of us that we simply aren't like others, and others avoid us or treat us poorly because of that.  It starts to seem like we can't succeed at anything.  Having a place, even a virtual world, that can serve as a starting point, and a place to start to succeed?  That's huge.  If the skills taught there are more broadly applicable than just "inside this video game" like most entertainment games, all the better. 

On a sidenote, this article wording is just adorable.  On the subject of adult autistics having to jump through hoops to be accepted in the wider world, this sentence: "A world that would sometimes rather ignore them."  Sometimes?  Really?  Hi, my name is Sarah, the whole world pretended I didn't exist unless I was directly in its face, and then it spent more time stomping me down than anything else.  I guess maybe I shouldn't be too rude to the article's excessively polite and idealistic phrasing.  But honestly, I think the more realistic wording is "almost always" not "sometimes."

Regardless, I hope programs like this become more common and accessible.  These could be the key to helping all autistic people live better lives, especially autistics that don't blend into society very well. 

Friday, July 20, 2018

Sensory Processing Difficulties: Taste and Smell (Part 4)

This is part 4 of a series on Sensory Processing Difficulties.  Part 1 was on the sense of touch, part 2 covered the lesser known senses (proprioception and vestibular senses), and part 3 was about sight.

I put these two senses together for a reason when I planned out these blog posts.  A lot (though not all) of what we think of as taste is actually smell.  Some sources contend that you can actually only taste the most basic flavors: sweet, salty, bitter, and sour.  Everything else, they say, is smell.  From personal experience with having very stuffed up noses (thus, presumably, eliminating my sense of smell), I'm not sure I buy that entirely.  But it's definitely true that having a very stuffed nose mutes my sense of taste. 

I went over this a bit in the very first post (which was about touch) but parts of eating belong to that sense instead of to taste.  Temperature, for example, is in the realm of touch, and texture is as well. Those two things are generally considered a major part of the eating experience, but have to be excluded here for scientific accuracy.

Limited Diets, Nails on a Chalkboard, and Cilantro

A common tendency in autistic children is food pickiness.  This is often based in texture, but also in taste and in smell.  The texture (which is touch) can be bothersome because some people hate or love crunching sounds, or mushy feelings on their tongue, or breading on food.  When I say "hate" by the way, I mean that in a much more literal sense than it's commonly used.  Think hearing "nails on a chalkboard" every time you crunched fresh green beans, or dry cereal, or popcorn.   You'd probably avoid crunchy foods after a while, too, and be upset if you were forced to eat them.

It's worth noting here, as I have in past posts about sensory processing, that all of these reactions are involuntary.  You can't make yourself suddenly like hearing someone drag their nails down a chalkboard.  You can learn to tolerate it, but it's going to be an unpleasant sound basically forever.  If the whole world sounds like nails on a chalkboard, though, you're mostly just going to want to avoid everything as much as possible.

Maybe another comparison that might make it more understandable is cilantro.  So, most people taste cilantro as a fresh, tangy, herb-thing.  And like it in food.  However, some people, as apparently determined by genetics, taste it like it's soap.  Very strong soap, directly to the mouth.  Needless to say, most of the people like that tend to avoid eating cilantro.  Why ruin your food with soap seasoning, right?

Oddly enough, I kind of taste cilantro both ways.  It does kind of taste like soap, a bit, but not enough to ruin the rest of the flavor for me.  I have a friend, though, that can't stand cilantro in things, which I can entirely respect.  

A really common thing I tend to read about in "my family's experience with an autistic child" accounts and medical recommendation books is the "all white foods" diet.   So things like white pasta, milk, bread, white rice, and potatoes.  The child will prefer these foods, even to the point of outright not eating anything that's not on that list.  Growing up, my dad called me "the bread girl" due to my tendency to enjoy and eat large quantities of bread.  I was never to the point of refusing to eat anything but the bread, but my mother can probably recount her frustration with trying to feed me a varied, healthy diet.

In fact, it was such a problem that the list below was a thing.  I think I recall having to have dozens of huge arguments with my mother before this list came into existence.  This is actually probably one of the later lists, and sadly one of the better examples of my handwriting in existence.  Good thing keyboards and computers became the main mode of communication! (cough) 

As you can see by the specificity of both fish and peppers, I was a pedantic child.  Fortunately for my mother, I didn't know that I could have said "variants of the wild mustard plant" and gotten cabbage, cauliflower, and broccoli all in one item.
Actually, having moved back into town and having had more meals with adult me, my parents seem pleasantly surprised at how wide and varied my diet is now.  Like, to the point where my dad actually couldn't believe I eat fish now.  Which...  I guess is fair, since parents tend to remember their kids as... kids.  But my diet has expanded as I grew up, particularly after I was on my own for a while.  In my junior year at college, I pretty much ate only macaroni and cheese for dinner each night.  I did take my vitamin pills, at least.  (Also, my lunch was much more balanced, which I'm sure helped.)

Through the Nose to Punch the Brain

Smell, on the other hand, can be a really unfortunate minefield.  Perfume, cologne, and scented products are widespread, and it's all too easy to get overwhelmed with the reek of these "beauty products."  People can even get migraines, or sick to their stomachs.  I know someone who actually gets a brutal headache if she smells things that are floral scented.  She isn't autistic, but she definitely counts as sensitive to smells!

Beauty products aren't the only pitfall.  In an untidy kitchen, the smell of rotting food from the sink, refrigerator, or the garbage can be overwhelmingly revolting.  I have, in the past, had to stay very far away from a kitchen sink because something had been left to "soak," and turned rancid.  People with less overzealous senses of smell simply don't understand, and may insist you're being excessive about your concern or reaction, which is about the last thing you want to hear when you're trying not to vomit. 

Another culprit is cleaning products.  Bleach has a very strong smell, as do some other chemical cleaners.  A freshly cleaned bathroom, like a dirty one, can also be a minefield for people with scent sensitivity.  I once cleaned my bathtub with bleach, and not only did I have to run the bathroom fan, I also had to open two windows for a cross breeze, and vacate the premises until the stench died down some.  I was literally getting dizzy, nearly to the point of passing out, from the smell.

My nose is kind of odd in general.  It seems sensitive, but it's either very selective, or I'm rather bad at identifying what it's telling me.  In the last house my parents owned, at dinner time, the food that was cooking would smell like one thing from my room on the second floor.  As I'd walk down the stairs, the food would smell like a different dish.  And when I finally got to the kitchen, I would find out that it was in fact a third, different food.

I also have a useless superpower for detecting spoiled cow's milk.  I can taste and smell when it starts to turn, but is still safe to drink, and the smell/taste gets progressively worse until I find it intolerable and the milk is definitely not safe to drink.  This would be less useless if I wasn't only drinking almond milk these days...  But I guess it's better to have it than to not have it.

Perfume is thankfully mostly out of fashion where I live, but every once in a while, there's that one person who just slathers it on and doesn't seem to realize that they reek.  I run into those at church sometimes, but they mostly, thankfully, don't sit at the back of the church.  There was this once that someone did, and they sat right by the sound booth, too.  So while I was trying to run the sound board, I kept getting nosefuls of this cloying, revolting fragrance at about 10x stronger than it had any right to be.  This resulted in my choking and coughing fairly often, which I had to try to do quietly, because it was still a church service and nobody except my spouse knew that I couldn't breathe.

I'm not really sure if this counts as smell, but my mother and I are both very sensitive to mold.   Within the last year or so, I went to a memorial service in a stone chapel.  The service was probably very nice, but I spent pretty much the entire time feeling dizzy and foggy and confused.  My mother said afterwards that the place must've had a mold problem, because she reacts to it.  She shook off the effects within 5 minutes, but it took me more like 20 minutes or so, outside, to feel less awful.  I've had similar effects when food molds in the fridge or the cupboards.  Those tend to last longer, because the mold spores get into everything, which then has to be washed.  Bedding, clothes, towels, all of it.

Next Week: Sound

So, this week I've described oddities and sensitivities of taste and smell, including how they manifest in my particular case, as well as more general cases.   Next time I'll finish this series with sound, which is the sense that makes me suffer the most on any given day.  That also makes it the sense I have to compensate most for, and I'll discuss my methods for that as well. 

Wednesday, July 18, 2018

Legwork and Life, week of 7/18/18

My back problems seem to have cleared up, thanks to two rounds at the chiropractor, lots of rest, and some stretching.  It took over two weeks, though, which is not terribly heartening for my future problems.  But at least it seems to be over, and I can move my neck without fearing I'll break something. 

This is a really good thing, because I went to get my hair re-dyed on Monday.  To get my hair its sapphire shade, I actually have to have my head in the wash bowl three separate times.  And unfortunately the place I have this done, does not have very comfortable wash bowls.  Like, "can-cause-neck-injuries-by-themselves" uncomfortable.  I am not a fan.  But, my hair is blue and short again AND I don't seem to have re-injured my neck.  Very happy about this. 

Even though I'm disheartened about the whole fasting and exercise routine, I'm still keeping it up pretty religiously.  I've felt kind of foggy and tired over the last week or so, which makes me wonder if the two are related.  But I do actually see at least one apparent effect from the intermittent fasting thing.  My stomach size seems to be shrinking.

I've always had kind of a large stomach, and it's very flexible to boot.  I can generally just keep putting food in it, and it'll stretch to accommodate whatever.  Recently?  That's less the case.  I think the stomach is still stretchy, but I feel full faster and don't seem to feel the need to eat as much.   I'm still waiting to see if this is going to end up in weight loss, or just a reduction in how much I eat.  Also waiting to see if my body's going to get angry at me for not getting enough nutrition.  I'm taking my supplements, which include a lot of vitamins and minerals, but that's really not a replacement for eating proper food.  I'm not going to magically be healthy if I eat snack food but make sure to take my supplements. 

So yeah, I don't know.  Something is happening.  Remains to be seen what exactly, still. 

Exercise-related, I've been playing more Pokemon GO recently.  Chris and I are getting back into it a bit since they finally added a friends option and trading (two fundamental parts of a Pokemon game).  This is helped along by the fact that there's literally a park within a mile of my house, and I can bike there in less than five minutes.  So while I've kept with my 5 day a week exercise, I've also occasionally just been snagging my bike and going down to the park for a few minutes.  It's not, like... really hard exercise or anything, but it's still extra exercise.  Also extra vitamin D from all that sunshine I've been accidentally absorbing. 

I don't have a really awesome tan or anything, but I basically just don't use sunscreen when I go out.  No burns yet, so I think I'm probably okay.  One of the major problems with my blood tests last year was low vitamin D.  With luck, this year I'll have higher results.  I'm going to guess they still won't be high enough to be healthy, but surely with all that sunlight and my regular supplements, they've got to be higher, right? 

Lastly, I ran across a new webcomic a couple days ago, which has proceeded to hijack much of my focus.  It's called Wilde Life, and is something like a cross between fantasy, slice of life, and horror.  I like fantasy type things, and the characters in the comic are very realistically made and intriguing.  I'm still trying to quantify exactly why the comic is so fascinating to me, but regardless, I've read it twice already and am working on a third read with the reader comments. 

I read a lot of webcomics, though I pruned down my reading list from over 100 of them to something more like 30 a few years ago.  So this one will definitely get added to the reading list, and I'll hopefully enjoy it for years to come. 

Monday, July 16, 2018

Reading the Research: Heading Off Depression at the Pass

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 a really basic quality of life upgrade for future autistic people.  This is one of those, "I guess we have to shout this from the rooftops to make it obvious to everyone" type studies.  Bullying tends to have a lasting effect on people.  Especially autistic people.

So you have an autistic kid. Statistically speaking, they will struggle a bit more with school, and also have a sensory sensitivity.  Perhaps they can't stand being touched, which makes casual body contact with their peers at recess nightmarish.  Perhaps the fluorescent lights flicker to their eyes, distracting them from the teacher's lesson.  Or perhaps little sounds from other classrooms or even their peers inside the classroom are loud and un-ignoreable, detracting from their focus on anything at all.  Dietary complications or gastro-intestinal problems are also common, so our hypothetical child may have to stick to a dairy-free diet, or have painful bowel movements regularly.

All of this makes our hypothetical kid struggle a bit more with life.  And all of it is innate to them and probably not shared with anyone else, meaning they can't get away from it and people won't intuitively understand.  Following so far?

Now we add in the rest.  Having such different experiences from one's peers tends to have an isolating effect.  We don't act quite normal, and do see, hear, or feel things others don't.  Our reactions don't make sense to an average person.  In additional, we may lag behind our peers in development of some aspects, like emotional control or organization.  This further isolates us.  That in itself is damaging, but... 

The isolation leads to bullying.  Every child gets picked on at least once in their lives, but those without a support network, those who are isolated, tend to become the favored targets.  If nobody will stick up for you, you're an easy target, and bullies like easy targets.  They come back for them regularly.  And this can start very young.  I was bullied in elementary school, starting either in Kindergarten or in 1st grade, I can't remember precisely.

The end result is, effectively, kicking someone while they're down.  The person's struggle becomes exponentially more difficult as they have to juggle more and more factors.  The social component of living is extra difficult for us, but those of us with more awareness will try to work extra hard in hopes of becoming "good enough" to be socially accepted.  Which I hope I don't have to point out, just makes our lives harder (and doesn't usually solve the problem, either). 

Personally?  I'm pretty sure I helped myself develop an anxiety disorder by learning to take in too much social and sensory input at one time.  It's overwhelming to look someone in the eye, but it's required for correct social performance.  So I do, and it's like being hit in the head with a baseball bat.  I kind of stop doing it if I'm sufficiently upset, or upset with someone in particular.  Not really on purpose, but why suffer further if you're already past a certain point?

The fix is theoretically simple: educate the children and the adults.  Make "unusual" into "normal."  Promote understanding of neurodevelopmental differences.  You don't have to be autistic to have sensory difficulties.  I've run into a few people at my church that also have them even though they aren't autistic.  And they usually had no idea that sensory sensitivities are a thing, until they were told.

I'm well aware it's easier said than done to change how schools work, but I believe it's doable.  And should be done, lest the depression comorbidity rate and suicide rate for autistic people continue to rise.

Friday, July 13, 2018

Worth Your Read: Autism Parenting Cynicism

This is a good description of a pattern from a parent that seems to be outside the feedback loop they describe.  It's a pattern I well believe exists, and contributes to the very disturbing numbers of parent-murdered autistic children.  Somewhere in the massive stress of caring for an autistic person, the parents begin to ignore the child's humanity, focusing on them only as a "burden."  It then somehow becomes okay to abuse the child, and even kill them.  And instead of being reviled, such behavior is deemed "understandable."

In my work in the community, I mainly work with Autism Support of Kent County, but I've also reached out to other groups and attended events from those groups.  One group, which I won't name in hopes of being respectful, seems mainly comprised of older, battle-hardened parents with what they call "adult children."  Basically, autistic and other special-needs people over the age of 18.  The group is most characterized by their cynicism.  They are old, tired, and angry at the systems that won't support them or their children without a fight.  This is all entirely understandable, it's a hard world to have special needs in, and it was harder still years ago.  However, even as things improve, they continue with this cynicism and cutting sarcasm, aimed at whoever happens to be nearby.

I wasn't personally told to go away when I mentioned that I wasn't a parent, but was in fact autistic... but in general the people there wanted very little to do with me.  I wasn't sufficiently like their kids to matter to them, and I wasn't a parent, so I didn't understand.  I was, simply, an outsider.  Almost a non-entity.  A tourist.  Despite that I literally live in a very similar world to the ones their kids live in. 

Such an attitude is infectious, I think.  These particular parents in the group may be too old to hop into the digital exhibitionism that the author describes here, but any newer parents that join the group to learn their tricks for handling the system... aren't.  So it really worries me to read about things like this, with parents putting the worst sides of their children on display for the whole world.

If my parents had done that, there would be videos of me in tears everywhere.  Videos of mild self-harm.  Screaming.  Vicious sarcastic remarks that I didn't mean and shouldn't be remembered.  And do you know what having all those videos and pictures would have done to my trust and my life?

It's very simple: it would literally destroy my ability to stand on my own two feet and try to take on the world.  I wouldn't trust my parents, the very people who raised me, because they'd have put my worst moments out in the world for any person in the world to see.  Those moments would forever haunt me, because I'd never know who'd seen them and who hadn't.  And I would know exactly who did it.

Job interviews, college applications, volunteer jobs, anyone could search my name and find those videos.  Forget getting a job.  Forget getting into a good school.  Forget being able to earn anyone's respect.  Those videos would define me as a person to thousands of people I'd never met.  Never mind who I turned out to be.  Never mind who I might still become.

The only thing that would matter to most people, would be those videos.

I was born about 5 years before the Internet really caught on.  And about 5 years before Asperger's Syndrome started to be recognized in the US.  Had I gotten my diagnosis younger, and had I been born later, this absolutely would be a problem I would be facing.  I think my parents probably wouldn't have opted to make ultra-public their struggles in raising me, even for the sake of feeling better about themselves.  But they might have posted a few pictures, or a video here and there.

I consider myself fortunate to have been born when I was... because I don't know if I could handle that additional stress.  It's already hard enough to be what I am, without having crystal clear recollections of my worst moments available to anyone online.

I would say I can't imagine how parents could be so cruel, but unfortunately, the last few years have been an education in how, and how often, people dehumanize each other.  Black people, women, gay people, immigrants, and special-needs people, it's all there in our history.  And history does love to repeat itself. 

Wednesday, July 11, 2018

Legwork and Life, week of 7/11/18

Hooray, the 4th is over, and the amount of fireworks going off at night is going down!  It's the point where I can almost count them on two hands each night instead of simply waiting in pained, expectant silence for the next one.  I wasn't able to see the closest fireworks show from the house, but some of our neighbors opted to let off relatively big fireworks of their own, so I didn't entirely miss out on seeing the fireworks this year.

It sounds like next year, my spouse and I could probably just go visit my parents.  Seems they had a pretty good view of the nearest fireworks show, and from the comfort of their apartment, too.  I could also see about simply biking over to the town hall area, which is less than a mile away, and just being right there at the show, I guess.  I think I might need to get better ear protection if I do that.

This week, my biking routine added injury to insult.  (I used that backwards on purpose, yes.)  I'm still not losing weight, but exactly a week ago, I somehow managed to pull a neck muscle while doing my head-checks to make sure I wasn't running over any pedestrians or cutting in front of them too closely.  It was the 4th last week, and there was a parade and such on the day.  Parade-goers walk on bike paths, but unlike normal pedestrians on bike paths, they don't understand that if someone says "on your left!" it means, "I'm approaching to pass you on your left side, please move to the right and don't startle when I zoom by you."

So I ended up doing a lot of twisting my neck to one side or the other, and without so much as a warning, the next day, my neck hurt like heck.  I left it alone for a few days, figuring that I'm still fairly young and it'd probably heal itself.  That was a mistake, apparently...  it only proceeded to get worse.  On Sunday night, I had trouble getting to sleep due to it hurting so much, so I went to the chiropractor first thing on Monday and got my neck readjusted.  The theory is that it helped, but I woke up yesterday just as stiff and sore...  It is, needless to say, frustrating.  I have an appointment again today, where they will hopefully shove the dratted thing back into place again and it'll keep this time.

In the meantime, I continue to find myself holding my head at an awkward angle: slightly sideways toward my right shoulder, and twisted left so I'm still kind of facing front.  I suspect this is the position that jars my neck least when walking and such, but it's somewhat befuddling that I keep returning to it without even noticing.  I'll try to straighten out my neck and face forward, and sometimes literally seconds later, I'll find myself at the twisted angle again.  It's awkward.  It probably looks really weird, too, so it kind of surprises me that my spouse hasn't said anything.

The other major "bleh" issue is that I seem to be slightly allergic to the algae that's growing in the pond out back.  Maybe I should say "infesting" rather than growing.  The pond is now more algae than it isn't, and the stuff is the color of dirty sea foam.  I'm hoping the homeowner's association will be paying to clean it out a bit, soon.  But it's odd to me, because the neighboring pond at the park has no algae at all.  Really makes me wonder why, and whether there's some critter I could import from there to here.  Going to bet it's a lot more complicated than that, though, ecosystems being what they are. 

Monday, July 9, 2018

Reading the Research: Autism Screening via App

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 a clear showcase of the dual nature of advancing technology.  A mobile app has been developed to help screen (test) children for autism.  On one hand, if this type of screening turns out to be scientifically valid, this is a good start for families.  Rather than wait, potentially for months, for their turn to pay hundreds of dollars at the specialist's office, they can get a quick answer here, and approach the specialist for confirmation and the "now what?" aspect of things.

The flip side, of course, is privacy.  Data from this app is not likely to be handled like regular medical data, which is to say, it's probably not covered by HIPAA.  As such, it does not have to be stored as securely, transmitted as securely, or kept on record for thus and such many years.  It is much more vulnerable to being hacked, and unless the Information Age ends very swiftly indeed, those records will be available potentially to anyone for the rest of these children's lives.  I understand the younger generation has fewer privacy concerns than mine does, but I still don't think it wise to simply leave information (including video recordings of people as children) lying around like that.

On a personal note, I wonder whether I would have reacted sufficiently differently that the app would have called me out as autistic.  If it had, would that have been sufficient motivation for my parents, or even for the social worker that recognized me as similar to her son, to push for a closer inspection?  The social worker was on somewhat unsteady ground.  Equating one child to another is always a bit of a stretch.  Perhaps, with the agreement of an app like this, it might have been sufficient to elbow them into paying more attention, and perhaps going to a specialist in hopes of being told "nope, that's not it."  Or perhaps it wouldn't have mattered in my particular case.  Regardless, I bet it will for others.  I just hope one of the major effects won't be children being turned down from schools, or having records like these used to bully them.

Friday, July 6, 2018

Autism- and Sensory-Friendly events

I've been seeing more and more of these recently: mainstream events designed around, or directly for, people with special needs.  In my particular community, there is no nationally-branded amusement park, but both major theater groups (AMC and Celebration) offer sensory-friendly showings of various movies.  I've been to one on accident: it was more or less the same as a regular showing, except the lights were on in the theater, there was a kid running up and down the stairs a lot, and it was a bit more socially acceptable to have a quiet conversation with the person next to you.

What made this particular event at Six Flags interesting to me is that they effectively closed their doors to most of the population of the US, in the name of being autism-friendly.  The amusement park did, of course, offer accommodations in various places for overstimulated children.  Most places do that.  Most places, however, don't bar the general public from the event.  On this one day, Six Flags did exactly that, allowing only autistic children, their families, and specially trained teachers into the park.

The article's author notes that the reasoning is quite valid: even one intolerant person is enough to make a whole family feel unwelcome.  Making the park only have people that have experience dealing with autism and the difficulties and differences that come with it means there's far less of a chance of some judgemental loudmouth asking the parents "why they can't control their child," or some similarly thoughtless, useless remark or question.

As a non-parent, I am admittedly not an expert in this area... but it occurs to me that children are literally small humans, and it's not exactly possible make any human be a perfect little puppet.  Especially if they've got difficulties and differences like mine.  Even if they're little.

Regardless, such remarks or other hurtful words and actions can really alienate autistic people and their families, so this step, while rather bold, is perhaps not unwarranted.  It's a single day in their year, as well, so it's probable the amusement park's profits weren't too severely dented.  I would be kind of curious to see a count of the attendance that day, though.  Amusement park admission isn't cheap, and a lot of families with autistic members don't have a lot by way of disposable income. From the fliers, it looks like there were sponsored admissions through at least one organization, though.

I'm not sure what to think of these exclusive events.  While I recognize the legitimacy of keeping the general public out so that we can enjoy ourselves without worrying, I'd hate to see it become a trend.  Exclusion negates the possibility of inclusion.  We can't teach neurotypical people to include us and see us as people if we exclude them from our events.

I doubt it'll become that widespread of a trend, though, so I'm glad these events exist.

Wednesday, July 4, 2018

Legwork and Life, week of 7/4/18

Happy 4th of July.  This post will be going up at the usual time, but I will likely still be fast asleep because we had late night movie night with friends, and it went until early o'clock.  I wouldn't have slept well last night anyway, due to all the noise.

Because it's around the 4th of July, and I live in the US, I currently live in a place where fireworks will go off at any given moment, especially if it's night time.  Autistic sound sensitivity, meet "nobody cares, enjoy your frazzled nerves and general ill-will."  Yyyyep, that's right.  Just because it's a national holiday does not make all those explosions somehow friendly or easier to tolerate.

This is my first 4th of July in this house, and I was kind of hoping it'd be a bit quieter than it is.  Which isn't to say it's not quieter than my old apartment was, mind.  People there thought it was acceptable to light fireworks off at, say, 3am, regardless of whether it was 2 weeks after the 4th, or before it.  Even knowing many of my neighbors were immigrants and thus at a lot higher of risk if the cops were involved, I almost called law enforcement several times.  I never quite got to that point, but I was mad enough to scream out the window several times.

You are now perhaps wondering how I manage July 4th at all, and whether I attend fireworks shows or do events at all, considering what I've described.  The answer to the first is "poorly."  When explosions can happen at any time, with no warning, I find myself a lot more rattled, anxious, and distractable.  I mostly survive this time of year.  The answer to the second is "yes, with proper motivation."  Fireworks shows aren't just about the fireworks, they're also about spending time with people.  I do find fireworks pretty, and I approve of their use of gunpowder over the more standard ammunition and guns.  I can prepare myself somewhat to be bombarded with the sounds, bring ear plugs, and clamp my hands over the earplug-wearing ears to further dampen the sound.

This year my friends are busy, so I'll miss the fireworks show downtown.  I'm not sure whether I'm sad or relieved.  It would be fun to spend that time with them, but my nerves are already pretty frayed.  It's been a pretty crummy last few days for me.  In addition to the fireplace gunk I mentioned last week, I think something molded in the house and my throat's been sore and scratchy for weeks.   I've been unable to help my grandmother get her stereo system (multi-CD player) working properly, despite putting literal hours into it at this point.  I ran out of some of my supplements, had major gastointestinal issues, and the house appears to have developed an infestation of tiny bugs.  They seem to be attracted to the tub, kitchen counters, and bathroom counters, whereupon they die, en masse.  All neatly and evenly spaced.  It's both bizarre and disgusting.

The last thing to mention is that I'm getting a bit disheartened with my 5 day/week exercise routine and fasting diet.  The latter makes the 3 days of biking kind of unpleasant, because I don't eat until noon, but with it being hot out, I need to bike before noon.  This would be fine, but I'm also still not losing weight, and I have a limited amount of patience for things that degrade my enjoyment of life with no positive effects to show.  I'll perhaps talk to my doctor about upping my "eating time" to 10 hours instead of 8, and starting to eat at 10am instead of noon.  I might be able to have breakfast 2 biking days out of 3, if that happened.  

Monday, July 2, 2018

Reading the Research: Out of Sync

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 notes a tendency I figured was just off about me, but is actually widespread in the population.  Apparently sight and sound are not processed instantaneously by most people, even neurotypical ones.  And it's not even a predictable delay in processing, either, it literally varies by the person.  I'd always kind of assumed that neurotypical people saw the world like they see movies: sight and sound processed together, in perfect sync.  The fact that I didn't have that perfect comprehension was just one more thing wrong with me.

But apparently not.  Apparently, I'm in good company with... approximately everybody.  Though some people do manage to overcome this complicating factor and learn to lip read anyway.  I've never managed that particular skill, perhaps due to my particular version of poor visual processing.  I would guess I probably have a much longer delay than most, or I wouldn't have scored in the lowest 5% of people tested in visual processing...

The article talks about improvements to hearing aids and cochlear implants, or computer media players.  Setting an individual delay could improve a person's experience with watching a movie, for example.  Personally, I think I see why I like having subtitles so much, regardless of whether I'm watching a foreign movie or a domestic one.  Because I read very swiftly, having the subtitles allows me to double-check what my ears hear, sometimes even repeatedly.  They also allow me to catch little side-conversations that aren't otherwise even audible to me, which means catching extra jokes and additional information I might not otherwise have.

I know subtitles aren't ideal for everyone, but I kind of want them to be included in every movie from now on, now that I know other people also suffer from a lesser version of what I do.  And can you imagine?  The deaf/Deaf community would get to enjoy so many more movies that way.  I regularly pick up a subtitles display machine when I see movies, even though I am not deaf in any way.  There's always like 12 of those machines, but I'm the only one using them with any regularity.  To be fair, they're not the most reliable pieces of machinery I've ever seen.  It'd be so great if the experience was mainstreamed.  More people would get the little easter eggs slipped into the side conversations, and the movie experience would be more inclusive overall.

It'd be better for many autistic people, too.  Apparently some autistic people gravitate towards Japanese cartoons (anime) for various reasons.  Such cartoons often come to us in Japanese with English subtitles, which well-accustoms a person to using such subtitles even if they do speak Japanese or understand it at the fluency level.  Having that extra information enhances my experience, even if it no longer teaches me what triumphant music sounds like, or what someone thinks an embarrassed laugh sounds like and what context it's done in.

All in all, this is a cool little study that has interesting implications for the future of both subtitles and hearing aids.