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. 

Friday, June 29, 2018

Worth Your Read: Burnout

This is subject that naturally strikes a bit close to home for me.  I am not doing as badly as the author of this article, but I am far from my best right now, and I'm still not managing my life the way I was a month ago.  I hope to start doing better soon, but until then, here's an account of what this person terms "autistic burnout," which is separate from standard burnout, or even social burnout. 

By the way, if you don't already follow the website Thinking Person's Guide to Autism, I strongly suggest you do.  I don't agree with everything they post there, but the articles are good, thought-provoking material.