Wednesday, October 17, 2018

Legwork and Life, week of 10/17/18

I did manage to get my life a bit more on track this week.  Yay.  Also, the research reviewer job for the government ramped up.  Eek. 

I don't think I mentioned the latter thing in this blog yet, so for background, in January this year I participated in a government grant application review panel focused on autism research.  Basically, the Army gets lots of government money, and when the US isn't at war, they spend some of it doing research on various conditions and diseases in hopes of improving the lives of the soldiers.  So, things like cancer and major skin burns, but also autism. 

They recruit scientists to review the applications for that money, but in a remarkably forward-thinking twist, they also have people affected by the condition or disease weigh in on the applications.  This is unprecedented elsewhere in the US, as far as I'm aware.  Usually organizations simply ask other scientists what looks scientifically viable, and meh to what anyone else thinks.  It's also somewhat unprecedented for autistic people to not only have our opinions sought and listened to, but also to be compensated for our time and travel.

This year, they're doing it again, and I've again been invited to participate.  Basically, it's a really awesome opportunity, and one I can't reasonably pass up. 

It does take a certain amount of prep work and paperwork to successfully complete the requirements for the program.  For example, I needed to spend some time in the last couple days reading 11 scientific abstracts and deciding how competent I felt on the subject the proposed study was addressing.  If I had been a scientist, I would also have needed to pay careful attention to the people and institutions named on each application, because you're not allowed to review an application whose people you're familiar with.  Interferes with the impartiality of the system and all that.  Fortunately, I'm mostly a nobody in academia, so although I read over the names, I recognized literally nobody and therefore can review anything they put in front of me.

Anyway, that's keeping me busy... so while I've slacked a bit on the blog, I still feel like I've been productive.  And I do still have a buffer, almost up to my birthday.  That allows me a certain amount of breathing room I wouldn't otherwise have.  Which is very good for my mental health. 

Speaking of the blog... hello to those of you reading from Europe and Asia.  I have no idea how I acquired readers from Poland, Germany, Ireland, Ukraine, Spain, Russia, South Korea, and France, but I'm flattered to bits that you think my blog is worth your time.  My blog comes with an activity tracker-type thing that tells me where people who visit the blog come from, and while I write to a mainly USian audience on autism and special-needs issues and research, I'd like to think I'm slightly less US-centric than most USians.  Very slightly.  Hopefully. 

I usually ignore the statistics on how many visits my blog gets, because the low numbers depressed me when I was just starting out.  I preferred to focus on putting out quality, useful, interesting content (hopefully).  Looking at the numbers now, they've grown some, but I expect I should learn how to work SEO and various other self-promotion things at some point.  I also expect that once I do so, I'm going to start kicking Past Me for putting it off that long... but my life has very much been a "slow and steady hopefully finishes the race" kind of deal, at least so far.  The alternative is burning out before the finish line, like the impatient hare in the story of the Tortoise and the Hare.  Hopefully Future Me will remember that and not hold too much ill-will about it. 

Regardless, please know that any of my readers are welcome to contact me via Blogger or on Twitter with any questions, comments, suggestions, or recipes.  I'm afraid I'm monolingual (to my shame), but I do like to hear from my readers and other interested parties.  

Monday, October 15, 2018

Reading the Research: Labeled Learning

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 demonstrates the power of labels, and the innate tendency of humans to gravitate to them and use them.  In a world where labels like "autistic," "special needs," and "high functioning/low functioning" exist, it's important to know that this tendency can't simply be overridden or schooled away from people.  Mostly, though, this teaching method has real potential for teaching the "hidden curriculum" that autistic people tend to miss.  

So, as I was reading this article, which is mainly about teaching babies how to recognize made up categories of objects, it occurred to me that the same kind of learning could potentially be done with older children and, say, facial expressions.  

So, you'd point the person's attention to a TV show, and mark the first few happy expressions for them.  Or angry expressions, or sad expressions, or embarrassed expressions.  And then see how well they pick up on subsequent examples of that expression.  You could start with animated shows, for simplicity, and work up to live action shows.  

With sufficiently advanced graphics processing, excellent software, and something like Google Glass, the same idea could be handled in real time.  Naturally, emotions recognition is just a small part of the hidden curriculum, but it's an important one.  Having a video series or a computer program to literally teach what each emotion tends to look like would be a good step towards making life easier for autistic people.

I can see the same thing working for verbal responses and context with older children and teenagers.  You could teach sarcasm this way, by noting the context around the sarcastic sentence and then noting that the sentence was sarcastic.  The person could learn to make those same calculations in their head, given time and practice.  

I expect this wouldn't be a surefire teaching technique for every autistic person, but the urge to categorize is strong in humans, so it wouldn't surprise me if it was at least somewhat useful to most learning styles.  

Friday, October 12, 2018

WYR: Applied Behavioral Analysis

I worked as a secretary ("administrative assistant") for a time at an autism clinic.  The fact that I was at the front desk, not in the teaching areas specifically, meant my experience was limited to brief flashes of the therapy, rather than seeing a whole session overall.  As such, I can only offer limited examples from my own life... because I was in my 20s before I'd even heard of using Applied Behavioral Analysis (ABA) to "treat" autism. 

I will say that nothing the author says here is contradicted by what I saw.  Essentially, what ABA focuses on is developing skills to make autistic people seem more normal.  That is, it trains people to respond to questions, teaches eye contact, movement (like how you walk), and social cues. 

Some of this is good.  Being able to communicate with neurotypical people in a fashion they understand, and being able to recognize social cues when they're given, are both good things.  Training a child to walk a certain way, or to make a certain amount of eye contact, or punishing a child when they flap their hands?  Not so good. 

If the difference isn't obvious to you, I'll explain.  Autistic people flap their hands or do other behaviors ("stimming") that look unusual because they are expressions of something.  That might be joy, or feeling overwhelmed, or even a side-effect of their laser focus on something.  Stepping in and stomping down on those behaviors because "they're not normal" is ableism.  Training a child to act perfectly neurotypical, going against their personal quirks, is basically insisting that they are invalid and the only correct way to be human is to be neurotypical. 

Eye contact is painful and/or overwhelming to some autistic people (hi there!), which is why many of us don't make appropriate eye contact when interacting with people.  Demanding we make eye contact in the name of normalcy means we're at a massive disadvantage in a conversation.  Instead of being able to focus on the subject matter, we're forced to juggle sensory overload and try to manage the conversation. 

The author talks about a particular little boy that she enjoyed in this school, with his inventive uses of language.  These things that made him unique, they were all stepped on, quashed, in the name of normalcy.  That's ableism.  That's what ABA preaches. 

Personally?  I had an uneasy truce with the ABA program I worked in proximity with.  I watched a child who could've been me get frustrated with being stuck in a room with the lights off.  In frustration, he first asked repeatedly for the lights to be turned on, then pleaded and cried, and finally attacked his teacher, who was trained to simply curb his attacks and continue directing his focus to the lesson at hand.  The teacher was bigger and much stronger.  You can guess who got their way. 

Good behavior was rewarded with pieces of candy, other food treats, and verbal praise.  So, basically the same way you train a horse or a dog.  At this school, the teachers did seem to genuinely like their kids, and there was actual playtime involved, not simply teaching time.  The kids did seem to have fun when they were out and about.  And the teachers did try to teach social skills, which I do think is important. 

But yeah.  ABA is not what I'd suggest for helping autistic people.  Even if it doesn't involve cattle prods.

Wednesday, October 10, 2018

Legwork and Life, week of 10/10/18

Most of this last week was spent nursing my spouse, who is thankfully recovering from a rather nasty illness.  Antibiotics were involved, and he spent a lot of time in bed, with the room as dark as possible.  By the sound of it, he was experiencing light sensitivity kind of like I do, and did not enjoy the experience.  No surprises there.

I ran the house alone as best I could, but between caring for him and my regular work, things inevitably fell behind.  I feel very fortunate that I was able to work ahead so much on this blog, because I think otherwise I might have been a neurotic mess.  Well, more of a neurotic mess.

Anyway, my spouse was finally well enough to go to work yesterday, which let me have some badly-needed self-care time.  I spent at least half of yesterday either sleeping or doing nothing that resembled productivity.  Sometimes it's really hard to tell if I'm doing self-care or if I'm just entirely unable to work...  but by the end of yesterday, I'd taken care of a number of my chores, done some personal hygiene things, taken care of a lot of to-dos, and written this entry.  So it wasn't a full waste of a day.

I'd like to entirely blame my spouse's illness for all the falling behind I've experienced in my self-care and such, but in truth, it was just the capstone.  Other than breakfast, my diet has been poor lately, and as it's gotten colder outside, I've found it more difficult to be interested in biking.  The comfortable self-generated breeze of biking in summer becomes chilling and unpleasant in fall, and I actually don't have biking pants or shorts.  At all.  I already have so many things on my wishlist for my birthday (which is coming soon), so it seems greedy and/or foolish to add biking gear to it.  Especially now that the biking season is all but over.

Adding to that, I don't really know anything about activewear, and what's comfortable or what you should look for when buying it.  I haven't had a very active life, suffice it to say, and I'd rather not buy clothes online and then find out they're not comfortable or I don't like them for some other reason.  Meh.  Perhaps I'll tackle it next spring.

Hopefully I can start getting my life back on track this coming week.  

Monday, October 8, 2018

Reading the Research: Join, join, join!

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 discusses a strategy for making friends, which is a subject many autistic people experience difficulties with.  That strategy: join a lot of related communities, rather than just one or two around your favorite subjects.  So, if you like webcomics, join the forums for a bunch of similar ones.  Or, if you like a particular sport, join various groups that watch that sport, or play it, or whatever your preference is.  Someone who loves jogging might get involved in a few local races, as well as join a runner's club or two, and regularly visit a local gym.  

The article goes into interesting complicating factors in understanding how friendships form, including the similarity of people inside the groups, and whether the people becoming friends have any acquaintances in common.  But surprisingly to me, they end up discarding those factors as irrelevant, given their data.  Meaning it might well be as simple as "how many fan groups have you joined?"

One of the researchers put it this way: "If two people are active in the same community at the same time, they have a constant, usually small, probability of forming a friendship."

I'd be really curious to know the results if anyone tried this, specifically.  There are whole websites devoted to helping people find interest groups.  Meetup is the first one that comes to my mind, but there's also Eventbrite, MeetIn, and CitySocializer.

The downside to this, is, of course, that people with special needs often have limitations to our opportunities.  We have limited energy we can spend on interacting with groups and strangers.  Our means of transport can be limited, for example.  Not everyone on the spectrum drives.  We may not have much disposable income to spend on meals out, or buying things like movie tickets or paid entry to venues.

These limitations aren't necessarily a complete roadblock- online communities can also lead to viable, worthwhile friendships.  This concept may surprise people of the older generations, what with the importance they place on face-to-face interactions...  but I have personal evidence that a good friendship can last years, even if you've never actually met the person.

My oldest friend is from the UK.  I have never seen his face, and he hates having pictures of himself online, so unless I visit England, I probably won't get to.  We've lost touch for a couple years here and there, but generally speaking, we chat at least once a month, sometimes multiple times a week.  Mainly via text, but I've also spoken to him via a service similar to a telephone.  He is quirky, but he is an excellent friend and genuinely cares whether I'm doing well or not.  He's learned to take disappointment in stride, thankfully, because I'm usually a grump about something or other, and also depression is a thing I deal with regularly.

Like any friendship, it's not been perfect.  We've had miscommunications in plenty, but the friendship has lasted over 15 years.  Which is more than half my life!  Relevantly, I met him through a fan community for a video game we both played.  I found out later that we also had a different community in common, centered on that same video game.

So maybe the theory works.  If I ever give it a try, I'll let you know.  

Friday, October 5, 2018

Worth Your Read: One Person's Light Sensitivity

Dr. Stephen Shore, noted autistic speaker, professor, and advocate, once spoke the often-paraphrased line: "If you've met one individual with autism, you've met one individual with autism." 

This is particularly true when it comes to sensory sensitivities.  The way we experience things can be markedly different from the "normal experience," of course.  But even the way two autistic people experience the lighting in a building can vary, wildly.  This is why it's so important to keep reading and learning about autism and related conditions.  You can never really "know it all" in any subject, but especially when it comes to this, there's a stunning amount of diversity. 

A few months ago, I wrote about what visual sensitivities can be like.  I, specifically, have a form of light sensitivity, but it has absolutely nothing on this article writer's experiences with light.  What I have, in terms of light sensitivity, is basically a ramped up version of normal vision.  Most people are uncomfortable, or even suffer minor pain, when they have to look directly into high beams on car headlights, or when stepping from a dark room into full sunlight.  I just suffer more, with less cause, than most people. 

This author?  If my light sensitivity is ramped up, theirs is on the strongest steroids ever invented.  Can you imagine having to plan your day around the lighting in the world and in all the buildings you have to visit?  This author has to do that.  Every day.  The pain of their bad experiences with lights can last hours.  That's brutal.  They mention deciding, as a rule, to work 3rd shift (graveyard shift, basically they work when most people sleep), so that they could cope with life easier. 

Imagine the author as a child, rather than the literate, communicative adult able to write the article we see here.  Can you imagine how difficult their life would have been?  Pain all the time, and nobody believes you?  Nobody understands, because neurotypical people rarely get headaches from changes in lights.  Did their parents believe them?  Was any help forthcoming, for a person that can't explain very clearly why they're suffering?

Wednesday, October 3, 2018

Legwork and Life, week of 10/3/18

I did see some mood climate improvements in the earlier part of this week, probably due to the CoQ10 and the broccoli sprouts.  I'm currently on kind of a downer mood due to lack of sleep, situational factors, and deteriorating diet.  But at least that's understandable and not, y'know, just feeling awful for no reason.

I'm trying to decide whether the effect was due to the interaction between the two new substances, or if it's literally just the broccoli sprouts.  I took the CoQ10 for about a week before adding the broccoli sprouts in properly, and didn't really see much difference.  But sometimes things can take that long to kick in.  The test, I suppose, would be to continue eating broccoli sprouts every day and then dropping the CoQ10.  Now's probably not the time to try that, though, since I'm feeling down and grouchy and ouchy.  (The lattermost is because I'm biologically female, and every month that fact makes me miserable for roughly a week.)   

I had a relatively successful week, as that goes, at least.  The student who's been doing my hair color graduated, and while I actually missed her on the day of, I did end up getting her the balloon and fancy cupcakes I'd bought in celebration of her graduation.  I had to drive about 2.5 hours round trip to do it, though, so it's fortunate it was just a one-time thing. 

Then this weekend my spouse and I saw my grandmother for a lunch and grocery shopping outing.  We tried a barbecue place, which was pretty decent.  I had fish and chips for the first time in years, and it was pretty darned good.  The fish was proper fish fillets, too, not processed ground fish.  I'd go there again, needless to say. 

Also this weekend, I hosted a very small party.  It's the first party I think we've had in this house.  (It's within the first year of us moving in, though, so that's fine.)  We had a couple friends over to watch a just-released episode of a TV show (The Good Place) that all of us enjoy.  It was pretty fun.  They brought dinner, which was thoughtful, and we spent a good amount of time just chatting about things besides the TV show. 

It's a little ambitious, but I'm hoping that maybe that event could be a regular thing.  We don't quite have a TV setup for the downstairs area yet, and may not for several months, due to prioritizing other things in the budget.  But so far Chris has been good about being okay with borrowing one of his computer screens for events. 

I don't really consider myself much a TV watcher, but this particular show was available on a streaming service that Chris has, and it came with high recommendations from multiple sources, so I finally gave up and watched it.  And it was, in fact, excellent.  Also, I have memories from college of getting together with friends, eating snacks, and watching a single episode of a TV show like this.  So I guess maybe it'd be a good thing to add to my life regularly.  

Monday, October 1, 2018

Reading the Research: Reputation Awareness

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 aspect of self-awareness that isn't talked about all the much in school... at least not directly.  It's a piece of the hidden curriculum, as some autistic people call it, that we don't necessarily acquire when others do.  Specifically, it's the sense for, and concern with, how others see you.  This concept factors into pretty much every social interaction on some level.  

You can, for example, literally watch this sense kick into high gear when watching insecure people in media (or in real life) try to date.  Posturing, dressing in clothes they wouldn't normally wear, pickup artist tricks, and "playing it cool" are all done because the person is worried about their image.  Have a very self-aware example from a popular webcomic.  Dating is the obvious example, but job interviews, family gatherings, and pretty much any other situation where others' opinions matter also count.  

So it's interesting to me that toddlers have apparently already developed this sense.  My earliest memory, probably from about age 4, strongly suggests I either didn't develop this sense until later, or really, really didn't care what my peers thought about me.  I was in a pre-K classroom, playing with various games and activities.  Most of the girls tended towards the "house" type settings, with dolls, playacting domestic activities.  But I didn't think that was any fun, so I didn't do it.  I preferred to run little toy cars through the chocolate pudding that was spread on the child-sized tables.  

Now, that wasn't the only activity I ever did, there were also board games (including the one where you put shapes into the board until the timer runs out, and then the pieces pop out- this is maybe where I acquired my dislike of time trials...).  But it's what I remember doing most, and I also remember not paying my peers any mind at all, beyond basic sharing and such.  

I do recall having some care for my classmates' opinion of me in early elementary school, though.  Specifically, I was bullied, and that made me worry about looking weak and target-able.  So that's a fairly clear indication that at least by age 6 or so, I'd developed that sense.  And naturally, in my preteen and teenage years, I did worry somewhat overmuch about what others thought of me.  

Eventually that spiraled into a proper anxiety disorder, as I tried to compensate for my autistic-ness and mostly failed.  Though in high school, learning that most people didn't care about me and wouldn't remember I existed unless I did something dramatic, was kind of a relief.  

I guess maybe that's only a relief for people that don't like being the center of attention.  But the only time I've enjoyed being the center of attention was my wedding reception, because I got to share the spotlight with my spouse, pretty much everyone was happy to be there, and other than "be there, eat food, smile, say hi to people," there weren't many obligations.