Wednesday, September 19, 2018

Legwork and Life, week of 9/19/18

The early part of this week sufficiently upset me that I ended up writing this Friday's post while trying to write this Wednesday post.  So look forward to that, I guess!  But fortunately the whole week wasn't nearly so upsetting.

My car is finally fixed, at least for now.  We ended up having to bring it in twice, because the mechanics ran out of time to work on it, but the brakes will hold out for a while yet, and I guess nothing was wrong with them other than the wear.  But I finally have two headlights again, so that's excellent.  The first time I got pulled over by the police, it was because I was missing a headlight.  The experience (which included misunderstandings, but at least no fines) was sufficiently upsetting that it makes me nervous to have a headlight out.  So that's all taken care of.

In very happy news, I'm almost kind of succeeding at making a set of posts ahead of time (a buffer) for this blog.  This was one of my year goals, and I'd kind of started managing it, but then fell behind again and was back to making posts as they were due.  These Wednesday posts, about my life and current events, are never written more than a day in advance.  But the Reading the Research (Monday) and the Friday topical posts can be written ahead of time without messing anything up, so it behooves me to do so.  It's just hard to write more than one per week, especially if you're struggling to manage your life already.

Also fun was this weekend.  Michigan, the state I live in, has a bunch of renaissance fairs, with medieval events, turkey legs, performers, and lots of interesting shops.  I kind of like going to them, and so does my spouse, so this weekend we went to a really big one in Holly.  It was a long drive, but we arrived safely and met up with a couple of my friends from college for like 5 hours.

It was really cool to see them, particularly since it was their wedding anniversary weekend.  They were willing to take some time during that occasion to see us, which was very thoughtful of them.  We mostly shopped, but also saw a comedy show and got food and drinks.  There was actually even a veggie burger stall for me, along with everything from barbecue to quesadillas.  As in most events, the refreshments were expensive, but mostly, the food and drinks were good.  So that was nice.  I highly recommend the apple dumpling stall, if you end up going.  It's a whole apple, cored and baked, wrapped in pastry and then topped with vanilla ice cream. 

The weather was sunny and fairly pleasant, if perhaps a mite hot, but the temperature only topped out at about 80 degrees, and we were wearing street clothes.  I can't imagine how the dedicated people wearing leather, plate mail, and/or corsets survived, but last year it was much hotter.  Even in street clothes and comfortable shoes, I ended up sweaty, hot, and footsore by the end of it.  Still, the sore muscles in my legs told me I'd gotten good exercise along with my good company.

I did end up buying a couple things, too.
Faux fur fluffy slippers!  Very warm.  Super nice for cold basements.  
A red rose... made from leather!  Scented with rose perfume, too.  
I'd been kind of wanting something like these slippers for a while.  It's cold year-round in the the basement of our house, and while I'd been making do with thick socks, slippers are just... really nice to have.  And very simple to put on.  Slide feet in and go.  And they're blue!  Because of course they are.  I think probably half my belongings are blue at this point.  

The rose is the second of its kind that I own.  Properly cared for, it'll last decades (although the scent won't, but that's fine).  I have a blue one from last year that I'm fond of, but I think it was misplaced in the move to this house.  Once I find it, I'll put it in the vase with the red one.  Eventually, in a decade perhaps, I'll have a dozen roses that never need watering or having their stems trimmed.  They're small things, but they brighten my mood somewhat.  

Monday, September 17, 2018

Reading the Research: What Does a Smile Mean?

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, I feel, kind of hits the top of the "well, duhhhh" meter for most people.  We've all seen fakey-polite smiles on TV or in advertisements, for example, which tend to get exaggerated to make a point. And there are mean smiles, where people are amused at your expense and their mouths smile but their eyes are usually showing their cruelty.  This article is not talking about those kinds of smiles, though.

Instead, this article covers more of the "I'm amused," the "I'm interested in this," and the "haha did that really just happen?" types of smiles. The researchers claim that in a one-on-one situation, people interact with computers in a social manner.  I'm not 100% on how accurate that is, since it's unwise to judge the whole of human behavior by my own behavior.  I sometimes treat objects like people, sometimes not.  Perhaps, in that particular setting, with their specially designed software, the majority of people also humanize the computer.

Regardless, it is absolutely true that many people (including some researchers, apparently) assume a smile equals "happiness" or some variation of that feeling.  In elementary school, if we're taught at all, we're taught that a smile equates to being happy.  As neurotypical people age, they learn otherwise, at least subconsciously.  They learn about polite smiles, mean ones, fake ones, embarrassed ones, and other kinds.  But if you ask a random person, they probably won't be able to articulate the various kinds of smiles without a lot of thought.  This is just part of the hidden curriculum that autistic people don't automatically learn.

Personally, I thought it was kind of interesting that this particular dataset showed smiles as a measure of engagement and interest with the activity, rather than any particular emotional response.  I also thought it was odd that people tended to smile more when getting wrong answers during the study than when getting right ones.  The article tells us the questions were difficult, and the subject was geography, which most US natives aren't great at.  So perhaps these smiles were of the "seriously, I got it wrong again?  Wow, I can't believe this is happening," type.

Meanwhile, I think I probably smile a lot less than most people I know, unless I'm actually engaging with people and need to convey my attention, feelings about the person I'm interacting with, or feelings on the subject of discussion.  So, I don't know.  Interesting stuff, anyway.  

Friday, September 14, 2018

Book Review: Atypical

Atypical: Life with Asperger's in 20 1/3 Chapters, by Jesse A. Sapersteen, is not to be confused with the TV show of the same name.  The author, in his late 20s at the time of writing this book, shares stories of his life and childhood in an honest, sometimes impolite, but always friendly, tone of voice.  I personally think it's kind of odd to write memoirs prior to actually being, like, 60ish years old, but whatever makes the book sell, I guess.  (Also, I suppose I should note that the life expectancy for autistic people is at least a decade less, so maybe this is less "you can't write memoirs, you're still young!" and more "it's a bit premature, but okay" territory.)

When confronted with your own indelible weirdness, there are two reactions that people may have.  They may either retreat into themselves, trying to avoid attention, growing quieter, even trying to change themselves to better fit in.  Or they may instead magnify their oddities, trying to make people accept them despite the first, 5th, and 15th rejections.  You're not stuck for life in whichever response you take, and people may choose one route or the other depending on the circumstances.

So herein lies the most vivid difference between myself and the author: Mr. Sapersteen mainly, vigorously, chose the latter route.  By his own words, he chose to be a class clown and live out his weirdness.  It took him a very long time to learn to filter his words.  And he experienced tons of rejection in the process, from every conceivable direction.  Very few people have patience or tolerance for a person that sticks out like a sore thumb and makes little apparent effort to consider the feelings of others.

I chose, in large part, the former route.  On my own, I studied neurotypical behavior very hard, trying to figure out why I was so avoided, and learned to fit in better as a result.  I also developed depression from the stress, and an anxiety disorder from the effort of processing so much information.  Because I was quiet, I was ignored in favor of louder, more visible people with problems.

Neither of these two paths is particularly invalid, but they both come with crushing consequences.  I didn't get my diagnosis until I was in my early 20s, by which point it was far too late to do much but pick up the pieces of my childhood and try to forge onward into my adulthood.  The author got his diagnosis younger (though not much), and proceeded to weird out pretty much everyone he met despite having that diagnosis.

I will say that my route, which has come to be called camouflaging in some circles, is linked pretty heavily to suicidal thoughts and self-harm actions... though by the sound of it, Mr. Sapersteen spent a good period of time suffering from the latter, and perhaps the former as well.  Both of us spent a great deal of time frustrated by the cruelty and thoughtlessness of our peers, the authority figures who were supposed to help us, and the world overall.

In the end, I'm not really sure which method is better for spreading autism awareness and teaching the general populace that we, too, are people.  Mr. Sapersteen's in-your-face tendencies, while modulated by adulthood, make the issue impossible to avoid... but also likely cause a great deal of resentment, even when the matter is well-explained with the diagnosis.  Whereas mine let me go mostly undetected, but people are then startled and hurt when my disguise isn't perfect... and also I miss dozens if not hundreds of teaching opportunities by blending in.

I suppose, like many things in life, moderation is the best bet.  As Mr. Sapersteen grew older, he learned to temper his words, and to hold back some of his less-acceptable behaviors.  As I've aged, I've lost a lot of patience with acting neurotypical and have proceeded to stop making as many socially-acceptable excuses for myself.  I've started ditching situations that make me uncomfortable rather than suffering through them, and started calling people out on being thoughtless or outright cruel to minorities and people with disabilities.

Compare and contrast aside, Mr. Sapersteen is a very colorful writer.  He writes clearly and thoughtfully, making his points with aplomb.  Potential readers should be warned that he writes his point of view without mind for your potential discomfort.  While I find that honesty refreshing, if occasionally difficult to swallow, others may not be used to such direct and blatant discussion of the subject matter... which includes his introduction to sexuality, his experiences with bullying, and all of his idiosyncrasies (there are many).

Read This Book If

You're interested in getting inside the skull of a particularly colorful, charismatic, and brutally honest (but somehow still cheerful) autistic person.  Parents, teachers, and other autistic people may find this book educational.  It's an entertaining and enlightening read, though definitely not a place to start if you've just received an autism diagnosis (or your child has).  As with all "my life with autism" books, keep in mind Dr. Stephen Shore's often quoted phrase: "If you've met one person with autism, you've met one person with autism."  

Wednesday, September 12, 2018

Legwork and Life, week of 9/12/18

"Bumbling along" might be the best way to describe this last week.  I've been in kind of a poor mood since last Thursday, and I can't point to what's causing it.  It also continues, unabated, so that's fun.

Chris and I went and did Pokemon GO-related events downtown on the weekend, which involved the social awkwardness of speaking to strangers you've never met and may never see again.  It's not as bad as it could be, because you at least have the game in common, but different people play the game in different ways, for different reasons.  Anyway, we attended both events and were reasonably successful at them, so that was good.  I did manage to lose my temper with the game at least once, though, which kind of detracted from the experience overall.  (The game crashes, a lot, and if it does so during a time-sensitive thing, it's very frustrating.  Especially if it just keeps doing it.)

On the health front, I'm signed up for another year of chiropractic care... but only for once a month this time.  I was getting frustrated with going every two weeks, right in the middle of my afternoon, while I wanted to be working on this blog.  I don't particularly deny that it's doing good things for me.  Or at least it's really handy to be able to show up and be like, "yeah, my neck really hurts, help?" and have that sorted out in less than 24 hours.  But the toll on my bank account can't be ignored, either, so I've pared down how much I'll visit, and we'll see how that goes.  If I keep hurting my neck, or my tension headaches start up again, I'll see about finding the money in the budget for it.  Otherwise, I'll still have some of the benefits without nearly as heavy a toll on my wallet.

Also changing is my haircut and coloring routine... the student I've been seeing at the school downtown is finally graduating at the end of this month.  On Monday, I went for the last time to get my hair cut and turned blue there.  I'm going to see about showing up on the student's graduation day with a cake and a balloon, because the school does literally nothing to celebrate a graduating student, and I think that's crap.  Maybe you don't need to break out a whole graduation ceremony, but just clocking out for the last time and waving to whoever happens to be there... strikes me as kind of insufficient.  So meh.  I can personally change that for this student, so I will.

After that, I'm going to start seeing the first student I worked with, who now has a job downtown at a salon.  She was positively salivating over what hair dyes she might use to get my hair to a more sapphire shade, rather than the darker blue that I'm currently sporting.  So we'll see, I guess.  I'm not thrilled about still having to drive downtown, but I might, at least, not have to pay for parking.  I hope.

In the meantime, I'm trying, reasonably hard, to make a buffer again.  I currently just have a Monday entry ahead of time, and I guess a flexible Friday entry I've been studiously ignoring each week in favor of making one.  I feel like this shouldn't be so hard, but I guess in my heart I was always that person that waited 'til the day before a school project was due before actually doing it.  Or at least a week before, if it was a big project.  I'm a firm believer in the ability to change your habits, but with all the other things I'm still struggling with, I'm just... not really willing to fight all possible battles in front of me.  I prefer to pick and choose, marshaling my energy and time as effectively as possible.  Smart, or lazy?  Maybe both.  

Monday, September 10, 2018

Reading the Research: Reading Facial Expressions

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 showcases a possible future for social skills training.  Currently, most social skills training is done with therapists, one-on-one, until certain benchmarks are met and the person can advance to a group setting.  But there's a massive lack of therapists, and even more than that, a massive lack of resources and transportation.  It is not, sadly, the case that only children of affluent families develop autism.  It's just more quickly recognized in such families, because the pace of life is less frantic, the parents have more time to spend with the children, and the teachers are less likely to be juggling 35 students at once. 

The children of immigrants or racial minorities may find themselves more or less on their own when it comes to learning social skills.  But it's becoming more and more common for people to have a smart phone, even very low income people.  The devices used along with the smartphones, in this study, may never be easily available to low-income people, but the basic idea could be used in a regular phone app.  Or, as technology continues to advance, a virtual reality version might be created to work in a similar way. 

Anyway, the idea was to make a game out of reading facial expressions.  This is important, because in some cases autistic people actually don't recognize that peoples' faces have useful information written across them, if only they understood how to read that information.  The Google Glass accessory was used to record peoples' face and prompt the children to name the emotion, or note a valid facial expression that was inside the field of vision.  The technology was limited to 8 basic facial expressions.

The results were promising.  Having been given the training (disguised as a game) to identify facial expressions, the children proceeded to use those skills, and were quite enthusiastic about doing so.  They also tended to make more eye contact, which is essential for catching those facial expressions as they're made. 

The therapeutic program is scheduled for a much larger trial, and I'll be interested to see the results from that, particularly how it compares to, say, insurance-accepted practices like Applied Behavioral Analysis.  Having self-help options for therapy, even ones this basic, is extremely important, and probably an excellent step forward toward having therapy available for everyone. 

I'm not really sure how I learned to read facial expressions, but I think I can safely say that I do still have some trouble recognizing expressions on unfamiliar faces.  Having a gameified trainer to help me categorize expressions, even into just 8 basic categories, would have been immensely helpful.  Honestly, if I had this technology, I'd probably go to the local mall with it and watch people, just to see what things the game would notice that I didn't.  

Friday, September 7, 2018

Worth Your Read: Disability in Church

So, real talk here (as if I do any other kind).  I go to church every Sunday.  This is in part because I believe and want to learn, in part because I like the music, and in part because I am very much a creature of habit.  Growing up, I went to church every Sunday with my family.  Religiously, if you will.

This tendency seems to put me in the minority of autistic people, which I'm disappointed to hear, because the church can be an excellent place to make connections, learn how to be a better person, and feel more a part of a community.  The caveat here, of course, is that the church has to be proactively inclusive for best results, and many churches... simply... aren't inclusive.

Maybe it's that the kids in children's church simply don't know what to do with a kid that won't stop talking, or doesn't speak at all.  Maybe the pastor is hilariously tone-deaf to the reality of getting special needs kids to sit still at the dinner table.  Or maybe it's just that people in the congregation just... don't approach you at the passing of the peace, or before and after the service.

This isn't necessarily targeted hostility, or even purposeful exclusion.  It can be simply that these people don't know what to do with a special needs child or adult, and so, for fear of doing something wrong, simply stay away.  Or relegate the person to the corner.

The thing is, parents with special needs kids, and in fact, special needs people, are pretty sensitive to being rejected and being avoided (which is a form of rejection, by the way).  In many cases, we're literally so used to it that it's all we expect from anyone.  (That does not make it hurt any less to have it confirmed, by the way...)

Reading this article makes me think about my own church, which I have attended for about a decade now.  And, I'm sorry to say, of the five qualities given for a disability-inclusive faith community, I can only personally say my church has the last one, the strong orientation toward promoting social justice.  Perhaps the parents in the congregation who're raising special needs kids could give a more positive analysis, because they've actually reached out for help, and I... haven't.

As far as I know, our leadership (as a whole) isn't specifically committed to inclusion, the church has no ties to disability organizations that I'm aware of, and while I did attend an educational workshop on making church a friendlier place for special needs people, it was literally years ago now, and I haven't heard any more on the subject.  I'm not even sure they adopted some of the simpler recommendations the speaker gave.

For my personal experience with the church, I've only had to make a stink about my disability and reasonable accommodations once, and it was in extraordinary circumstances... but at this point, four months later, it still kind of makes me slightly angry to think about, so I'm probably going to remember it that it happened forever.

Mostly, the church has simply been non-inclusive by the vice of ignorance.  Workshops have happened on equal rights for LGBTQ+ people, on race relations (anti-racism), on various cultural developments... but because the needs of people with disabilities are so wide and different, it's kind of difficult to make a neat little box of things to teach all your leaders, and then bring to the congregation proper.

This isn't just a lack at the church I currently attend, by the way.  In my almost 30 years of life, I've attended at least 7 churches regularly, and visited at least 50 more while church-hunting.  Pretty much all of them had this same problem.  It's not that they didn't care, it's that they literally didn't know what to do with special needs people.  And weren't proactive about deciding it was important to learn.

Another bullet point in the article I'd like to underline: "Parents indicated that special needs inclusion and participation in faith communities was easier when children were young and became more difficult as [the children aged]."  This is probably a factor in why a lot of autistic adults don't care for church and organized religion.  As we stop being little and cute and easy to manage with distraction, people stop having as much patience for our quirks and start getting nervous and anxious about us.

I spent... I want to say at least 7 years, at my church, regularly attending.  I did not meet anyone at the church in that time.  I did answer a call for volunteers, which is how I learned to run a sound board, and have continued to do that.  But it's like peoples' eyes just... slid right past me.  If they didn't already know me, they didn't approach me.  Recently, I've been joining in one of the Bible studies at church, and that has netted me some acquaintances that genuinely care about my existence.  Some of them will now say hello to me and ask after how I'm doing.  That Bible study is in limbo right now, though, because the leader suffered some health complications and wasn't sure, last I checked, whether they were going to run the study this year.

The last bullet point I'd like to add to is, "Fatigue was a common parental characteristic cited as preventing inclusion of a child at church."  It's very fair and understandable that parents of special needs kids are going to be chronically low energy and chronically tired.  I'm not disputing that.

What it's missing is that the special needs kids and adults are also going to tend toward chronic low-energy and fatigue.  It is very tiring to be among dozens to hundreds of people that don't understand you.  Some instruments (looking at you, piccolo, and you, loudest freaking hand drum player in the whole state) are simply intolerable after a time.  Sometimes the sermons are hilariously tone deaf from our perspective, and assume you can just... go out to a fancy restaurant to treat yourself.  Because the one thing lots of disabled people (and families with special needs kids) have lots of is money (/sarcasm).

I think churches can do better.  My own church definitely can, anyway.  Whether they will, is another question entirely... so I guess maybe it's time to email the minister of congregational life again, to see if he's heard anything about the committee that was supposed to be forming for disability inclusion...  

Wednesday, September 5, 2018

Legwork and Life, week of 9/5/18

Labor Day has come and gone.  Holidays always mess up my schedule somewhat, because Chris is home rather than at work, which means I have less time alone to work.  I'm not sure why, but I find it almost impossible to focus on work with someone else in the room.  Unless they're complete strangers, it's a coffee shop, and I'm really into whatever I'm doing.  

You can, and are encouraged to, ignore complete strangers in public settings unless there's a specific reason not to.  This is very pleasant for me, because the fewer people I have to acknowledge, the less distracted I am, automatically.  Parties and social occasions, are then, by default, kind of awful because the opposite rule is true there.

Anyway, I did manage to do a bit of work in a short period of time when Chris was busy with other things, so there was that.  But also, we got a new kitchen overhead light installed.  I managed to break the one that came with the house with a combination of my head and the crockpot, and it'd been broken for a few weeks now.  (I was taking the crockpot down from its perch over the refrigerator, accidentally hit the light with the crockpot, bapped myself in the head, and dropped the crockpot amidst the shards for good measure.  It was not an experience I recommend to anyone.)

It was a surprising amount of work to replace the light!  But Chris did most of it, so I can't complain too hard.  I did spend a good period of time holding the light up so that Chris could attach the wires with two hands.  This is actually a very difficult task for me.  I don't seem to have good circulation to my arms when they're held up, so I get tired very fast.  But of course, I could hardly drop the thing while he was still working on the wiring...  Once it was done, though, the new light is brighter than the old one by a good margin, and looks nice.  So that's a pleasant improvement.  

We also went out to lunch with my parents over the weekend, which was pleasant, and did some Pokemon hunting.  Mostly, though, it was a "stay home and relax" kind of weekend.  I guess we both kind of needed that, so it was nice that it was a 3 day weekend instead of a regular 2 day weekend.  

The only other major news of note is that my car is having minor mechanical issues.  The brakes need replacing, I think, and one headlight went out.  So, nothing too expensive, hopefully, but kind of poor timing.  I'm having to drive my spouse to work, and then pick him up again afterwards, while they work on the car.  We're very fortunate to be able to manage two cars (insurance prices are no joke in this state), but I do sometimes wish maintenance wasn't a thing I had to deal with for cars.  I suppose I'm not really alone in that regard.  It's just one more thing that can break in a truly startling variety of ways, causing anxiety.  

Beyond that, there was a huge set of storms that came through a few days ago, bringing torrential rain, so the pond is still quite algae-free, to my distinct pleasure.  The rain did cause flooding for at least one of my friends, unfortunately, but I guess nothing got ruined, so there was that.