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

http://www.thinkingautismguide.com/2018/09/on-aba-they-hate-you-yes-you.html

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

http://www.thinkingautismguide.com/2018/09/what-is-light-sensitivity-like-for-one.html

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.  

Friday, September 28, 2018

Worth Your Read: The Supercrip Narrative

https://medium.com/@shaunbryan/temple-tantrum-the-passion-of-being-autistic-and-not-temple-grandin-supercrip-8442cd50c329

Before anyone gets upset about the use of the word "crip" (short for cripple) and "supercrip" (super cripple), I should point out that words grow and change over the years.  Those words, especially the first one, are being reclaimed and redefined to be part of an identity, rather than the extremely offensive derogatory categorization they've been in the past.  Similar transformations have occurred to the word "queer" via the LGBTQ+ community, and the n word (I am way too white to type it out), by the African Diaspora.

Like the n word, however, it's unwise for a person that isn't a member of the group to use it in reference to someone of the group.  So, unless I as a white person would like to be insulting and an awful person, I should never go around referring to any African Americans as the n word.  Similarly, an abled person shouldn't go around calling me, or someone in a wheelchair, a "crip."

The main thrust of this article was more true a decade ago than it is now.  There are now dozens to hundreds of "my life with autism" books, though of course none of them as widely read at Dr. Grandin's books.  However, Grandin does not seem to me to be the towering giant the author sees her as.  She is joined in the big leagues by John Elder Robison, Dr. Stephen Shore, and Ari Ne'eman.  While I'm sure the audience for these and others will never been as wide or as devoted as those for Dr. Grandin, that's kind of the natural result of being the first.

Then, too, she's human.  We are all, to a point, products of our upbringing.  I'm not sure what my generation's "black people" will be, but the civll rights movement will follow sooner or later.  First it was women, in the earlier 1900s...  then it was African Americans around Dr. Grandin's childhood.  In the 80s to the present, it's been the LGBTQ+ people.  I'd like to think that if we get stable artificial intelligence, my generation will treat it like people... but most likely the population will be yet another subset of humanity that I'm currently blind to.

All that said, I don't disagree with the author about the problematicness of Dr. Grandin's platform.  While I haven't personally detected the blatant racism of the 50s in her literary works, her marked distaste for video games and computers rubs me the wrong way.  She mostly speaks of them in terms of addiction, which, while important, is not the whole of the picture when it comes to technology.  Any kind of addiction is serious, and that is of course important to address... but after a while, the whole thing starts to come off as "new things are bad!" which is a classic fallacy of aging generations.

Finally, I sighed pretty hard when I read about people's concepts of "overcoming autism."  Dr. Grandin has done no such thing.  She is still autistic, and no amount of achievement, public speaking, or medication will make her not autistic.  She has, like many of us, simply learned how to blend slightly better with the general population.  She accomplished this by way of much experience, proper medication to handle her anxiety and other comorbid issues, and various other supports.  It is flatly laughable to assume that if you took all those supports away, she would still be perfectly fine.

We, none of us, will ever not be autistic.  I've not seen the behavior the author describes, where people ease their guilty ableistic selves by simply nodding approvingly at the one autistic person they think has "overcome" their diagnosis, but I wouldn't doubt it's happened.  One of the stereotypical US white people tendencies is to avoid conflict when possible, and acknowledging your own biases, and indeed, that disability itself exists, will cause internal conflict.

Even that isn't enough, though.  Society itself, and all the people in it, must adapt to us, not merely sit back and expect us to bend ourselves into pretzels to fit in.  Perhaps the next group to have a visible civil rights movement is... us.  

Wednesday, September 26, 2018

Legwork and Life, week of 9/26/18

This week tried my patience rather extensively, and also added a new supplement to my routine.

Free time activities are, I think, supposed to be either fun or meaningful.  Or both.  You work for a living (and maybe you love your work too, but most people don't have that luxury).  But when you're done with work, you go home or go to some other space, and decide what to do with yourself.  Maybe that's volunteering at a pet shelter, or maybe it's marathon-watching TV shows on Netflix.  Either way, what you do is probably either fun or meaningful to you.  You can even fold doing chores into this, because the meaningful thing you're acquiring by doing chores is "a pleasant home environment."

This last week's activities, other than the time I spent at the Autism Support of Kent County meeting and the time spent walking with a friend, I would firmly classify as "neither fun nor meaningful."  I am, suffice it to say, kind of down about the whole thing.

Friday and Saturday, I attended some group activities in the computer game my spouse and I play together.  Normally that's at least somewhat fun, because the people are generally decent and it's cool to see that part of the content.  But I'm doing rather poorly with my individual contributions, and it's not going unnoticed.  That makes me feel bad about myself, and these activities are 5 hours of my week, so it's not exactly a short time we're talking about here.

Additionally, the leader of the group has been downright mean to most of the group in the last couple months, and it's really starting to wear on me.  There are literally dozens of places I could go if I wanted people to be mean to me, I don't really want that invading my fun, too.

Then on Monday, I returned to try to stick out the D&D game I complained about last Friday.  The one with the rigid, childish group leader that insisted that everything I did in the actual game was wrong and that I needed to change it all immediately, without admitting an ounce of fault on his part.

I'd kind of hoped that maybe if I could do things the way he wanted, I'd at least be accepted... but nope.  I got disparaging comments when I wasn't being ignored, and what little time I did spend roleplaying, I proceeded to do very poorly at and feel terrible about afterwards.

The crowning barbs on that experience were that literally everyone else was having a great time, including my spouse, and so it was just me being sad and lonely and extremely disappointed with everything.  I was really going to try to stick out this mini-campaign until it was done, but I'm not sure subjecting myself to that level of pain is worth the satisfaction of seeing the story through, or getting to play the character concept I came up with.

So I'm mentally kicking around non-offensive ways to bow out of the campaign, such as, "I'm not handling my workload on Mondays/Tuesdays well when I attend this game," and "a family member is ill and I'm cutting out various evening obligations to help care for them," but both of those are lies.  The real reason is that the DM handled my differences like a spoiled toddler and I don't see the point in subjecting myself to emotional agony every Monday...  but you can't say that in polite company.  I also don't want to ruin my spouse's fun in the game by leaving on a very sour note, because they know I'm his spouse and they'll associate my actions with him.

Feh.  I'll think of something.  Or lie through my teeth like a "normal" person.

In happier news, I've added CoQ10 to my supplements lineup.  I'm not super happy about having yet another pill to take, but considering the algae and such, having additional detoxification support isn't a bad idea.  I haven't noticed any super-exciting developments in the week since I started taking it, but it's probably not hurting anything.

In the same vein, I'm trying to eat broccoli sprouts on a daily basis now.  You're familiar with the health benefits of broccoli, I'm sure.  It's a powerhouse of vitamins and minerals, along with providing lots of fiber and very possibly fighting cancer.  The same chemical that supposedly fights cancer (sulforaphane) also has some research that shows it helps with treating some symptoms of autism.  (Symptoms like depression, communication difficulties, and anxiety, specifically.)

While I'm not really sure how much that's going to apply to me, eating broccoli sprouts and young broccoli is most likely not going to harm me (other than the taste, blech), so trying to add it to at least one meal a day is a good plan.  My current default meal is chopping the stuff up really good and then putting it on my sprouted grain bread and nut butter sandwiches.  It looks super weird, but the nut butter politely drowns out the flavor, so I'm calling it a success.  

Monday, September 24, 2018

Reading the Research: Hearing Your Own Footsteps

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

Today's article explains a fun feature of the brain's ability to filter out irrelevant noise in regular living.  This is a standard feature of the human brain.  You are unlikely to be aware, every second, of the sound of a fan, or the hum of your computer, or the rumbling of the car on the road.  Instead, these noises are filtered out in favor of noises that are novel or stick out: something falling off a shelf, a knock on the front door, or a car horn.  This is an evolutionary advantage, because the person having to listen to all of that at once is going to be more stressed and less aware of the important information than the person that only has to process the important information.

Mice, apparently, work similarly.  The article explains why this would be an evolutionary advantage, and I would not, frankly, be terribly surprised if mice also filter out the hum of electronics and other repetitive sounds, so they can listen more carefully to the movements of other creatures.  

My particular brain doesn't filter noises very well.  I'm typing this while my spouse drives us across the state, and the highway is making regular galloping sounds that sometimes change in pitch.  I do not get to ignore them like he probably is.  Every car or semi we pass, I hear the whoosh and rumble of their engines.  These sounds are pretty much irrelevant, but they are not filtered out.  As a result, I hear everything and have to spend mental effort to process it all.

One final thing to point out about this article.  The quoted researcher at the bottom is pretty clearly not educated about what autism is.  Describing autism as "the inability to learn the consequences of one's actions" is like describing flying as "flapping one's arms emphatically." The concepts are technically related, but only in the more superficial way.

Let me be very clear.  "Social paralysis" is not what causes autism, and not what autism is.  The absence of social intuition does not make a person unteachable.  Autistic people can, and regularly do, learn to interact socially with neurotypical people.  We simply have to be taught differently.  I could not be here, typing my extreme disgust with this quote in an otherwise good article, if autistic people were unteachable.  Thanks very much, academia...

Friday, September 21, 2018

Summarizing the "You're Weird" Narrative

So, I spent a lot of time last week preparing a character for a D&D campaign that my spouse plays in.  For the confused, Dungeons and Dragons is kind of like telling stories around a campfire, except it's a cooperative story you're all making together, and you use dice to figure out whether important actions in the story succeed as intended.  You basically get a group of people together, one person runs the world, and the others each have a character that interacts with the other characters and the world.

So you get, say, a group of 5.  4 players, who have your stereotypical fighter, rogue, wizard, and cleric group.  And your game master, who runs the world.  This group of fantasy heroes goes and fights off an invasion of goblins.  The game master says what the goblins do, how the invasion advances, and how the players' actions against the invasion turn out.  The fighter might want to attack the goblin horde head on, while the rogue would prefer to sneak around to find the leader.  The group, between themselves, settles on what they'll do, and then tells the game master, who has the players roll dice where appropriate (for example, to find the goblin leader amidst the horde, and how well attacking him goes).

Chris had been having fun with an online game for months now.  And I'd looked through some new and interesting ideas for characters, and come up with something that had, after years of apathy, piqued my interest in playing again.  The campaign was apparently pretty decent for story (which is what I like), the players were seemingly nice folks, and the game master worked with me to make the character fit into the world.  The first session even seemed to go fairly well, sans a minor miscommunication during play.

Then yesterday, the game master messaged my spouse, complaining that I was basically disrupting his game and doing things all wrong.  In a virtual tabletop environment, I prefer to use text to describe my character's actions, and apparently that was unacceptable.  The game master preferred everything happen via voice, but hadn't bothered to tell me this ahead of time.  But instead of talking to me directly about it, the game master took it up with my spouse.

This is a classic neurotypical move.  It's too uncomfortable to express your ire directly to the object of that ire, so you take it up with someone more comfortable, yet accessible to the person.  This third person is then expected to relate the situation to the transgressor, who... is then supposed to apologize or change their actions or whatever the expected response is.  I've seen this happen over and over, and it's kind of crap.  Unless the situation is so volatile that neither party can speak civilly to the other, you're basically pulling a third party into your argument... because, apparently... you can't handle the idea of discussing the problem directly with the person.  Why is this normal and okay again?

The upshot of this was that I ended up spending five hours playing telephone with the game master, who, for the first couple hours, couldn't seem to clarify what he was upset about, while insisting the upset was my fault, then, after eventually messaging me directly, finally settled on an almost specific version of "you're just not doing things the way I want them done."  Even when I tried to summarize and clarify what "the way I want them done" was, he was still evasive and continued to insist that the whole thing was my fault.

This is a very common narrative that autistic people get, which is one of the reasons I'm complaining about it publicly.  In a nutshell, this is:


Autistic Person: *does Normal Activity A in an unusual way that suits them well*
Intolerant Neurotypical Person: *upset by the strangeness of Autistic Person* "What are you doing?"  
AP: *startled and confused* "Er, I'm doing A."  
INP: "Why would you do it that way?  That's stupid and wrong!  Why aren't you doing things the right way?!"  
AP"This way works well for me and gets the job done.  It seems okay." 
INP: "You're terrible and you should feel bad.  Do A the way I demand you do it!"  *refuses to describe exactly what they're expecting*
AP: *tries to do A with the incomplete information*
INP: "That's still not right, what are you doing!?  Do it this way!" *clarifies a little bit better, getting more upset the more they have to explain*
AP: *finally figures out what INP wants, and does it*  "Okay cool, that... really isn't at all natural to me and I don't like it much."  
INP: "Too bad!  Do it that way from now on!"

This particular version only happens if the intolerant neurotypical person is confrontational, which I've noted above is rare.  Usually, INP's second line is merely thought inside their skull, and the autistic person is avoided, fired, and/or excluded.  The dialogue, then, rarely proceeds past that point, and yet the autistic person is expected to understand what they were doing "wrong", why the INP was upset, and is then further expected to correct their behavior for future encounters.  

Does this seem fair to you?  It doesn't to me, and it's particularly crushing when it happens over and over, in high stakes situations, like your job.  It's part of why so many of us suffer depression and anxiety.  And speaking personally, it's why I've kind of stopped bothering with heavy social interaction environments like Dungeons and Dragons.  I will, invariably, get something wrong, or be too different or weird, and this is what results.  Unless I have a really strong and abiding reason to stick it out, that's it.  

The older I get, the less patience I have for that crap.  I hope the world gets more tolerant in a hurry, because I'm only going to be 30 this year, and if my pace of lost patience keeps up, I'm going to end up a shut-in.  

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

https://church4everychild.org/2016/02/09/what-are-the-stats-on-disability-and-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.  

Monday, September 3, 2018

Reading the Research: Deficits and Depression

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 the different views students, teachers, and parents have of school children in regards to skill deficits and depression.  I was pleasantly surprised to see the the professor overseeing the study suggesting that simply asking the kids was the best possible indicator for depression.  In my experience parents, teachers, and adults at large assume kids are stupid and don't know anything, and thus their opinions can't be trusted.  I have a marked opinion otherwise, frankly, because kids are simply little, somewhat inexperienced humans.  Not being fully developed and not having 20+ years of life experience doesn't particularly make someone stupid, in my opinion.  

It didn't, however, surprise me that teachers and parents tended to miss that a child was depressed.  Teachers often have to handle classes of 20+, even 30+ students at a time, and depression sometimes only looks like a shy or quiet child.  It's the noisy, misbehaving children that tend to get the attention, so the depression is easy to miss... and it was missed, when I was growing up.  It's maybe a bit less understandable for parents, in my opinion, but of course my own situation, growing up, included a very very busy father, and a mother with her own form of deep depression.  Circumstances, therefore, were not exactly ideal for recognizing either my autism or my growing depression and anxiety.  In today's hectic US society, that is probably more and more the case.  

The article itself sparked a question, which I'll pose to you now: did the depression cause the skill deficits, or did the skill deficits cause the depression?  

In truth, I don't know the answer, and there may not be a broad, generalized answer for it anyway.  But it's very much the case that children can get anxious and depressed when they can see they're not keeping up with their peers, or with expectations set on them by others.  This isn't just autistic children, but you can often see it in autistic children because we don't have the full social intuition that's expected of us.  Our social learning doesn't necessarily keep up with the demands of school, especially once puberty hits and things get extremely complicated.  So there's reason enough to assume skill deficits can cause depression.

But then, too, depression can absolutely cause skill deficits.  If a child is depressed for reasons besides lacking skills, such as having a parent in prison, or suffering a form of abuse, that affects how much attention, enthusiasm, and patience a child can put into learning social skills, and even reading and mathematics.  A child struggling at home, essentially, may also struggle in school... and eventually, the lack of full attention, enthusiasm, and patience will take a toll on how much the child learns.  In school, some subjects rely on the student fully understanding the previous subjects, so performance would degrade over time.  

I was alarmed to see that 30% of the 643 elementary students in the study reported mild to severe depression.  That's almost a third, which is nearly the same as the depression levels reported for the general population in a study a couple weeks ago.  That's really really bad!  And this was early elementary school, before puberty makes things way more complicated.  


Friday, August 31, 2018

Disability in Slow Motion: An Essay and Response

http://brokenpen.net/aspielessons/disability-in-slow-motion/

I have a friend on the spectrum who also writes about his experiences with both autism and a sight-based disability.  His work is usually a mite shorter than mine, which makes for quicker reading and hopefully better comprehension.  Also unlike me, he has a pretty set negative opinion of the Christian church and its people.  We are somewhat more agreed on the terribleness of people in general, but as you'll see, I think it's more often incidental terribleness than actual targeted terribleness.  Onwards!

So, the first point about intelligence.  I actually have no idea what my friend's IQ scores look like, or what his scores would be in other measures (like EQ, or y'know, pretty much anything that doesn't measure book learning), but he strikes me as pretty smart.  I, personally, do have some scores to look at, and while I'm not at genius-level IQ, it's safe to say that as far as that metric goes, I'm well above average.  However, I definitely have a deficit when it comes to learning speed... so the smart phone quality comparison doesn't fit my specific situation.

I'm uncertain whether it fits on the whole, to be honest, because my mother, who was valedictorian in her high school class, and is not autistic, has this same issue.  Once we finish the learning process, we're very good at the thing we were learning and can then teach it effectively to others, but getting to that point can be a very slow, annoying process.  But let's assume the comparison does fit the situation overall (with some exceptions).

The next point is prejudice.  Innate prejudice is kind of an interesting subject, because as he points out, what you're prejudiced against changes with your level of education.  People with less education tend to discriminate more based on innate identity: skin tone, country of origin, male or female, and age, for examples.  Whereas people with more education (like, people that went to college, grad school, etc), tend to discriminate by chosen identity.  So, Democrat or Republican, liberal or conservative, pro-life (cough, pro-birth*) or pro-choice, and religious affiliation (or lack thereof).



It's worth noting that neither set of prejudices is a good thing.  As a more educated person myself, I'm inclined to say it's better to discriminate based on a person's choices than on their uncontrollable life circumstances... but A) I'm obviously going to be biased, and B) Seriously, discrimination is bad.  Any discrimination.

Why is prejudice against people with disabilities different than prejudice against skin color/ethnicity?  Both things are innate identity, rather than chosen identity.  I'm not entirely sure.  If I had to guess, it's because of that age-old tendency to victim-blame.  In the Bible, people with physical disabilities were assumed to have sinned terribly, and their disabilities were heavenly punishment.  There's even a point in the Bible where Jesus is asked whether a man who was blind from birth had sinned, or whether his parents had sinned.  There's literally no third answer allowed in the societal context (though Jesus himself did in fact give a third answer).  Victim-blaming continues to this day, though it's generally less sanctioned in church than it was in those times.

So those two points of the introduction done, let's get into the popped balloon ideas!

  • Innate worth

I agree with my friend in that being faced with a disabled person absolutely tests your belief in this, but not that the idea itself is a lie.  It's that, in my opinion, most people's definition of "worthy" includes perfect physical and mental health.  This is mostly unspoken in US culture, but it's literally everywhere.  Your supermodels, your TV stars, your celebrities, everyone pretends they're in perfect health (unless it's their thing to not be).

The dumbest thing about this idea is that most people won't meet the criteria for "perfect health" except for maybe a year or so around their college years.  Me?  I never have.  I've been autistic since before I was born, depressed since before middle school, and fighting an anxiety disorder since at least high school.  As I've aged, I've also discovered I have vitamin deficiencies, which led to achy knees, low energy, poorer sleep, etc.

  • Freedom of expression

This is true, to a point.  The unsaid bit is "as long as it doesn't hurt anyone else."  Hair cuts, broken arms, and temporary-seeming changes are one thing, but being autistic, or being black, or having lupus are entirely different.  I would tend to argue that people can actually feel slightly hurt by having to handle interacting in a nonstandard fashion.  So, if they're not comfortable with talking to a racial minority, this causes them anxiety, which is a form of emotional pain.

Now, I am not saying this is somehow the racial minority's fault, because it definitely is not.  I am saying that because that anxiety ensues, people are less likely to be okay with, say, ethnic styles of dress and haircuts, or less neurotypical forms of communication.  These things are covered under freedom of expression, but they're not okay to some people, sometimes, because of that discomfort.

The solution to that, in my opinion, is to raise children in a very diverse environment, where they learn to communicate with all kinds of people, and that all kinds of people are pretty much just people, whether they're black, Hispanic, autistic, Downs, old, young, physically disabled, gay, trans, or whatever.  You can teach adults this too, it's just harder.

  • Having kids

I've never quite gotten the "I wish you were never born" vibe from someone, but that might be a function of my disability being invisible, and the fact that I've gotten pretty decent at hiding it.  I've no idea if anyone's ever thought that sentence after interacting with me, but I hope not.  Either way, this is another facet of the insistence that everyone have "perfect health."

That said, "why would you bring anyone into this world if... <more suffering than joy> ...was what was waiting for them," is one of the reasons I likely won't ever have kids.  That, and the expense, and the fact that it's hard enough to manage my own life without adding a tiny defenseless human into it...

A thing my friend didn't note here:  some people with disabilities do want to have kids, and get some very strong negative reactions when they share that aspiration.  It's assumed that all disabled people will make poorer parents because of their disabilities, and further assumed that regardless of what kind of disability it is, they and their children should be aiming for that perfect health ideal.

  • "Fixing" people with science

I feel like this point might be more in reference to my friend's visual disability and depression than the autism.  While parents do continue to clamor for a "cure for autism," one is neither forthcoming nor likely in the truest sense.  It's been 30 years, and what we've discovered is that autism is a trashbin diagnosis and there's no single cause, or even a set of 6 causes.  There's dozens to hundreds of factors that have to align, and which factors those are varies by the person.

The visual disability, on the other hand, is a little more cut and dried... but of course not all surgeries go well, and advanced techniques are discovered too late to help some people.  And depression is...  well.  There's the pharmaceudical merry-go-round, where you spend 3+ months on a pill to find out if it works for you, and whether the side effects are worth it... and if it doesn't work out, you try the next one and use another 3 months of your life.

Then, too, some people go through the whole set of pills for their particular situation, and find that literally none of them work.  This is currently called "untreatable depression" which is bullshit.  It's only "untreatable" because the current system only wants to prescribe pills, rather than try things like LENS/neurofeedback and transcranial magnetic stimulation, changes to diet and movement, treating other underlying causes of depression...

  • God's healing

This is where my friend and I really diverge in opinions.  So, once again, there's a culture of idealized "perfect health."  And people with disabilities fly in the face of that.  We exist, therefore "perfect health" isn't an option everyone can pretend to have.

Personally?  I see the striving for perfect health as unGodly, an incursion of modern culture into religion.  God makes people in all sorts of different ways, with all kinds of different challenges, external and internal.  I've heard enough stories of people being blessed by learning to see through a disabled person's eyes, to know that God uses people of all kinds to accomplish his goals.  Sometimes, a goal can't be accomplished without a certain type of person, and a stereotypically "healthy" person is unsuited for it. Only with certain life experiences and circumstances might someone be suited for a particular job, and having a carefree life kind of lets you miss all that.

Thus, demanding that God magically fix a person, based on the stories of Jesus doing just that in the Bible, is not really a laudable Christian thing.  People like me, and like my friend, exist for a reason.  God does not promise any of us perfect health, piles of wealth, power, influence, happiness, and all the kids and grandkids we ever wanted, in this life.  That's our culture's ideals talking, not the Bible.

We're his servants, not his masters.  We're meant to do his work in the world, not have all our wants and needs personally attended to.  Heck, even alongside those stories of miraculous healing in the Bible, there was Moses with his poor speaking ability and Paul with his "thorn in my flesh."  (Also, Jacob was a coward, a thief, and a murderer, and Peter was extremely impulsive.) God didn't take those things away from either of them, but simply accommodated them where necessary.  They were effective, influential people despite those conditions.

I also disagree strongly with "a question mark is an enemy of most people of faith..."  I think faith goes hand in hand with question marks, and faith without doubt is only blind dogma.  Many of the Christians I know express doubt on occasion, over life circumstances, bad things happening to good people, world events, and theology.  Doubt comes with the faith, even for the best Christians.  It's very normal.