Monday, April 30, 2018

Reading the Research: Computer-Aided Social Skills Analysis

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 features a new system developed jointly by Dartmouth College and the University of Cambridge.  It uses infrared light to gather information on face-to-face interactions, measuring distances between speakers and body angles in order to advance our understanding of what's ideal in situations like job interviews, team projects, and doctor-patient conversations.

The name of the system is Protractor, and its data-gathering instrument is... an access badge-sized object that can be worn on a lanyard or with a clip.  This is a rather remarkable advance, as previous systems for studying body language tend to involve video cameras, audio recording devices, and questionnaires before and afterwards.  With this new system, participants using the technology are likely to be less uncomfortable and their behavior more natural and genuine than if they had cameras pointed at them, microphones shoved in their faces, and were subjected to paper tests. 

While the researchers themselves are more focused on the potential benefits for international workplaces and improving fancy interview training programs, I see possibilities for teaching autistic people fine-tuned social blending skills.  It's a very basic system, but it has immediate implications for teaching personal space and correct posture.  Both concepts can be difficult for autistic people, especially if the autistic person suffers from depression of any stripe.  I personally have had poor posture for most of my life.  I think it's improved somewhat, but I'm still more comfortable hunching than I am sitting straight. 

The Protractor system could be used to give immediate, continuing feedback on a social situation... which would make interview training a lot easier to do, especially if paired with smart glasses or some type of heads up display.  You could even make a video game out of it.  The interviewee gains points the better their posture is, for example.  The longer they can hold that posture while answering standard interview questions, the better their score.  This could be paired with more typical interview training (such as how to handle those questions, what to wear to the interview, what things to bring to the interview, etc).

It doesn't just have to be interview training, either.  Any situation that follows rules like an interview could have a scenario or whole video game built for it.  Situations like "going through airport security" or "interacting with the police" would also qualify.  Personally, I could use some practice with the latter...

The possibilities are remarkable, regardless.  As we come closer to understanding what "the ideal" is in nonverbal communication, it will become easier to teach autistic people how to mimic that ideal.  Paired with teaching neurotypical people how to accept people that are different from them, the world could become a much better place for everyone. 

Friday, April 27, 2018

Hans Asperger: Humanitarian or Nazi?

As you may be aware, a report has recently surfaced regarding Hans Asperger, sometimes known as the father of modern autism.  From his work, and that of Lorna Wing, Georg Frankl, and Anni Weiss, came our modern understanding of autism, not as merely a disability or a death sentence, but as a condition that distinguishes us, but also makes us remarkable-and fully human- people.

These people and their life's work laid the groundwork for autistic people to be integrated into the wider world, to be accepted as people rather than "damaged goods" or "soulless husks," as the previous understanding made us.

Our previous understanding of Asperger was very much a positive one.  As a scientist in Nazi Germany's territory, he was subject to pressures and decisions regarding his subjects.  He worked with people with disabilities, who were pretty much invariably not up to the Aryan ideal.  Previous reviews of his papers and correspondences suggested that he tried to shield his subjects from death at Nazi hands by suggesting their unique talents and abilities were a necessity for brilliance in the arts and sciences.  As such, Hans Asperger has been held up as a paragon, a humanitarian and hero in the face of the evil eugenics program that resulted in so many dead Jews, gay people, unionists, and other "undesirables."  His name was given to the diagnosis "Asperger Syndrome," which was my original diagnosis, and the word for "autistic people who function acceptably in society, but still have definite problems and disabilities in some areas." 

This report, written by a medical historian, suggests rather strongly that the case wasn't so clear-cut.  In analysis of his medical papers, correspondences, and other written records, it seems likely that his personal beliefs were very similar to that of the Nazis on several fronts, and that his career very much profited from the removal of the Jewish scientists and doctors from the medical clinics and universities of Austria.  And while Asperger himself did not ever join the Nazi party, he did join a number of other Nazi organizations.  Most damningly, it's clear from the report that Asperger did personally and indirectly refer children to a facility called Am Spiegelgrund, which was known in his circles to be a euthanasia facility.  Effectively, he sent them to die.

The report is a lengthy one, and goes into excruciating detail, complete with pictures of people and old documents and quotes from correspondences.  (If you don't have time to read the article, consider checking this summary out instead.)  Having read it, I have little doubt that the glowing picture of Asperger we've been given is inaccurate.

That said, I am not terribly surprised by this revelation, either.  In the course of my schooling, I studied the Holocaust and the rise and fall of Nazi Germany at least three times, starting in 6th grade (or roughly when I was 11).  These were not fun sections, suffice it to say.  I am of Austrian descent, and that line was Jewish at the time of World War II.  Needless to say, that was not to their benefit.  My grandfather escaped the attentions of the Nazis by getting out early (and looking sufficiently Aryan that he wasn't questioned much).  So every time pictures of the Nazis' victims cropped up, I always kind of wondered whether I wasn't looking at long-dead relatives.

Obviously, I bitterly resent any hint of eugenics in modern society, whether that's against disabled people or against a racial minority.  Between my family history and my status as a nonconforming autistic person with disabilities, I think the idea should be relegated to the purview of the Nazis, who are at this point accepted as one of the purest forms of evil humanity has ever put into practice.  

Because of those personal connections, I tended to pay more attention to the Holocaust units that I might've otherwise... and in all honesty, given the circumstances in which Asperger found himself, I'm... not overly surprised this information paints a remarkably less heroic and infinitely more complicated version than what we've been assuming.

The era in which Asperger lived was a complicated and dangerous one.  If one didn't show a certain level of compliance with the reigning power, one tended to disappear.  Had Hans Asperger truly tried to protect his subjects in the modern era understanding, that all life truly does have value and severely disabled people are still people, he would have been killed along with his subjects.  We would not know his name, because he would never have risen to prominence.  Such a policy would be so far opposed to the "race hygiene" order of the culture and government, that it simply wouldn't have been allowed to stand.  Asperger, then, was likely more pragmatic than heroic.  With his Jewish colleagues out of the way, and connections in the Nazi government to protect him, his career soared.  He became reputable and influential far faster than he would have otherwise.

As a result, we have his work... and that of his colleagues Lorna Wing, Georg Frankel, and Anni Weiss.  Work which made it possible to give people like me a better idea of why we're so different, and the cultural idea that autistic people can work, have lives, and be... ourselves.  And from that, too, the basic respect for human life, and the idea that even people with significant challenges should be able to live as full of lives as they can. 

By the report, much of this is remarkably counter to what Asperger's ideas actually were.  Does that negate the existence of those cultural ideas?  I don't think it does.  In fact, I think it makes the ideas even more rich and excellent, because they are the best parts of what Asperger wrote, with all the disgusting eugenics and able-ism stripped from them.  Such delicious irony, that things written in such inhumane times should turn out to be the foundation of greater human good and decency!

I am not, by the way, excusing Hans Asperger for his actions.  He sent children to die (never mind all the other things I listed above), and if that's not a good reason to revile a person, I don't know what is.  But like most of these stories we tell about historical people, the truth is likely that he was neither a paragon of humanitarianism nor an evil murderer.  He was a man in an evil culture, and chose to do both evil and good things to advance himself and science.  His circumstances were exceptionally steeped in evil, and that very much limits your options.  But it's not like he didn't have options.  There were those in Nazi Germany and its territories that did work to save people from "race hygiene" and eugenics.  It seems, now, that Asperger was not one of those eternally heroic souls.  I am disappointed with him, as I often am when people choose to be merely people and not good people.

In the end, Hans Asperger was just a man in a very evil situation, acting mainly for self-preservation and selfishness.  That is very human, though not commendable.  Like most legends and heroes, the truth ends up showing that he was only human, and not the shining example of humanitarianism we had hoped he was. 

However, the good effects remain.  The fact that the "father of modern autism" was no father at all, but in fact was just a man, does not invalidate our modern understanding of autism.  This blog is here, after all, and you are reading it rather than saying, "She's autistic and needs to be institutionalized."  The good that Lorna Wing, Georg Frankel, and Anni Weiss did with their own work remains.

I shed my use of "Asperger's Syndrome" when the official diagnostic manual eliminated the diagnosis as separate from autism itself some years ago.  I approved of the idea that autistic people should be seen together, each of us so different, but that someone like me could give hope for someone else who is very heavily challenged by neurology and biological difficulties.  So it doesn't hurt me to leave that label behind entirely.   I'm more inclined, at this point, to snarkily tell the man that his legacy flew directly in the face of his life's work and personal beliefs.

For further reading on the autistic community's reaction to this subject, please check out this conversation between Maxfield Sparrow (autistic) and Steve Silberman (advocate and author).

Wednesday, April 25, 2018

Legwork and Life, week of 4/25/18

Another week done.  I seem to be fully recovered from last week's adventure, and have moved on to being tired from more recent adventures.  Most recently, I woke up at 5am on Monday morning, anxious about this week's Reading the Research, and proceeded to not be able to sleep afterwards.

That kind of underlines to me how important it is to get these things done ahead of time, as I had indeed left it 'til pretty much the last minute.  I've been tired since, unhelped by the fact that I didn't sleep that well the last two nights, too.  Your brain keeps track of how well you've slept for the last two weeks, so I'll likely experience diminishing tiredness as the week goes on. 

Fortunately there shouldn't be anything super exciting this week beyond a couple things: the monthly Autism Support of Kent County support group meeting, and a trip to the movies with some friends.  The former is a pretty informal event I try to attend each month, but I missed last month for some reason.  Possibly because it was on my monthaversary.  Possibly because I was dead tired and wound up from the moving process.  Either way, no one's going to hold it against me that I missed it. 

The movie outing is a bit less usual, and will unfortunately involve staying up a lot later than I would normally... but the company is good, the movie is supposed to be good, and I'm starting to learn that experiencing something with people, when it's still new to everyone, is an experience that cannot be replicated.

It seems silly, in retrospect, but for a long time I assumed that beta testers and early adopters were just strange people that didn't want to wait for the bugs to be worked out of those products before jumping in.  Which is flatly foolish, if that's all there is to the story.  If a video game or a new product breaks and damage ensues, it's generally your own fault for rushing in and not waiting for the bugs to be worked out of the design.  If you beta-test a new microwave, and the microwave melts your otherwise microwave-safe dishes, the company is unlikely to give you new dishes.  So then you have ruined dishes, sadness, and a fancy microwave that might not ever stop melting your dishes. 

But that's not actually the whole story.  Yes, those damages can ensue, but especially with something big, like the latest expansion of a popular video game, there's also a shared experience component that can make you feel pretty good, and builds comradery between those in that experience.  Especially if some suffering is involved.

I'm a cautious person by nature, and for most of my life, I tended not to hit the midnight releases of movies, or jump headfirst into a new video game.  This saved me a lot of sleep as well as money... but it also deprived me of that commonality of experience.  By the time I'd manage to see the latest movie or try that video game, the bugs or technical difficulties had been worked out, but I was already aware of the major pitfalls of the movie (because spoilers and movie reviewers), or far behind everyone else in the video game. 

So at this point I'm striking a balance between caution and trying new things as they're available.  Mostly, I'm choosing the new things carefully, I suppose.  Trying the latest gadgets and gizmos?  Not so much.  Buying the next expansion of the video game Chris and I play together, and possibly staying up late to play it together when it releases?  Maybe.  Going to see a new movie at midnight?  Sure, I suppose. 

In other news, I might end up with slightly more responsibility after this evening...  The condominium association our house is in has a meeting at the nearest public library, and I have an invitation from the board president to join the board itself.  I'll probably do it... it's usually best to have some input on the area you live in, after all.  And it doesn't sound like it's going to be too much work.  Just a meeting every couple months.   And it doesn't sound like the people are too argumentative, so that's nice at least. 

Monday, April 23, 2018

Reading the Research: Why Meditate?

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 articles deal with meditation and its various benefits.   There are actually three (I'll link them as they come up), which was kind of like my tablet was yelling at me for not exercising properly or eating well.  You see, meditation is apparently fantastic for all aspects of your health: physical, emotional, and mental.  But other than a few failed tries at it, I haven't managed to pick up the habit or capability.  This is despite an actual class in an autistic-people-only conference and a free app with guided meditation on my support tablet/phone.  Apparently I should be trying again, because:

Meditation has immediate benefits: reduced anxiety and improved heart and circulatory health.  This is excellent for anyone, but particularly for autistic people, whose bodies age quicker from the stress of existing in a society that often doesn't accept us and forces us to act in ways counter to our natures.  In addition, something like 70% of autistic people suffer anxiety disorders of some variety, so pretty much anything that reduces anxiety is something to look into. 

Another aspect is that it improves your perception, focus, body awareness, emotional regulation, and self of sense.  All of these are things autistic people can often use more practice with, either because we developed slower than neurotypical people, or because it's harder for us due specific disabilities. Having an intestinal tract that refuses to digest dairy or gluten, for example, tends to take your mind off learning how to put words and description to your feelings.  Since you need to worry about whether you'll digest each meal properly, or whether it'll send you to the bathroom, you have less time to learn social niceties or be introspective and thoughtful regarding your emotional wellbeing.  Even if you have the dietary tricks figured out, it's still both a hassle and a major distraction.  Taking time, then, away from the rest of your day to specifically focus on other things, can be very important and an excellent opportunity for growth. 

Lastly, it seems the effects of meditation last.  The gains in focus from meditation seem to offset the standard loss of focus in aging, according to a study from last month.  As our ability to focus deeply and intently is one of the hallmarks of autistic people, this seems like a good practice to look into, just in terms of keeping your quality of life where it is.

With all these benefits, and a lot more that I don't immediately have articles to back up, why is this such a hard decision for me?  Well, part of it is that I've already tried it, and I got discouraged by how incredibly bad I was at it.  You see, meditation is directed focus, and I am apparently very distractable.  I don't think I made it through a single minute straight without getting sidetracked by this thought or that worry.  That isn't actually a dealbreaker, according to some stuff I've read recently... but I didn't know that at the time.  It was very frustrating to keep failing so quickly, over and over.  Apparently it's actually quite normal and expected, when learning, to get sidetracked that often.

I also found it difficult to justify the time spent, even when it was just 10 minutes, when it simply felt like I was sitting there twiddling my thumbs.  That's one of the reasons these studies are important.  But it also turns out you can spend a mere minute or two a day when you're learning- something simple to start out with.  I didn't know that, at the time, and figured I was probably lowballing it at 10.  Guess not. 

At present, I'm exercising 5 days a week and trying to eat better.  It might be time to try exercising my brain in this way, also.  After all, the mind affects the body, just as the body affects the mind. 

Friday, April 20, 2018

An Autism-Friendly Amusement Park

Recently, my spouse linked me to a stubby little article about the Sesame Street theme park becoming autism-friendly.  To which I said, "What?  Is that even possible?"  Amusement parks, as a rule, tend to be loud, full of children (also loud), and full of other extremely unpleasant sensory experiences.  So having one now saying it's going to be autism-friendly seemed... absurd, frankly.  Even for a company that's tried to make a point of including autism in the world, up to making a literal character on the show be autistic.

It's not that I didn't think their intentions were good.  I just found the idea impossible to imagine.  How do you make a theme park, with people everywhere, limited menus, near-mandatory social interaction, amusement park rides, and loud music/noise levels into anything that even slightly resembles an "autism friendly" environment?  Never mind the lightbulbs, flash photography, and other families.

Their answer, apparently, is to turn their entire theme park into a certified autism center, following the standards laid out by The International Board of Credentialing and Continuing Education Standards (IBCCES).  By the look of it, I don't think this means they'll be offering therapy classes along with their theme park rides, but it does sound like at least 80% of the stuff will have received training that teaches them how to handle kids with special needs.  Which would make the interactions between staff, parents, and autistic kids a lot less painful for everyone involved.  So that's the staff and characters handled.

The amusement park rides are a bit trickier... but they have several accommodations for those.  First, and most interestingly to me, they have a .pdf guide explaining each of their attractions.  Right down to rating the sensory level of each ride for each of the 5 classical senses, with descriptions as to why each ride received the rating.  I found it somewhat notable that while the scale goes up to 10, the highest rating any ride received for any sense was a 5.  But I suppose A) this is a park for small children, and B) they're probably trying not to include too intense of experiences anyway.

I would have liked to have seen proprioception (kinetic sense) included as a ranked sense criteria, as I think that was my major problem with roller coasters and such at more standard theme parks... but honestly, this amount of thought is a very good starting point.

In addition to the guide, there does seem to be a "jump the line" program for families with special needs, but it looks like you have to sign up ahead of time and get verified and such... which is probably their way of avoiding what happened to Disney World, with people pretending disabilities left and right in order to skip lines.  There's a detailed guide available online for this program, as well as specific accommodations and rules regarding service animals, oxygen tanks, casts, and other specific accommodations.  I could very much do without the blue and orange theme they have going for that guide, but I don't think it's technically causing me pain...  maybe.

Not much can be done about the other families in the park, of course... but people with sound sensitivity do have some options.  First, the park offers the use of noise-canceling headphones, free of charge.  I've never tried the particular brand, called "Whispears," but anything is better than nothing.  In addition to these, there are both "Quiet Rooms" with adjustable lighting and comfortable seats, and "Low Sensory Areas" where presumably shouting and loud music are prohibited.

Foodwise, it looks like Sesame Place has the standard "no picnic lunches" policy, but it does seem to include some wiggle-room for special diets, assuming you get into contact with them in advance.  By the sound of it, the various eateries in the park itself will offer some options for special diets... so it probably won't just be "pizza, hot dogs, and pretzels."  The restaurant options are listed online, and seem to include various Asian, Mexican, and standard US fare.  I didn't see any mention of coconut, soy, or almond ice cream... but I guess even Ben & Jerry's is still working on their dairy-free ice cream, so maybe I'm expecting a bit too much there.  At least for now.

Overall, they seem to have done a pretty good job trying to anticipate and accommodate the most common special needs of autistic children and their families.  I am, at this point, much too old to enjoy Sesame Place, but it does seem very promising for families with kids in that age range.  Check out the section on their website, which talks about their specific accommodations for autistic and special needs people.  If you end up going, do let me know what the park is like! 

Wednesday, April 18, 2018

Legwork and Life, week of 4/18/18

Oof.  I wish I could make this a nice, normal life update, but I can't.   Today you get a brief explanation of what happened, and then some discussion about the aftereffects.  On the bright side, that will probably be more interesting for literally anyone who isn't my immediate family.

On Monday, I got started out for a nice, normal week.  There were a few social events planned, I was going to be exercising at home one extra day this week, and there was one oddity with my health appointments, but nothing really troublesome.  It was setting up to be a good week. 

I started out with Monday morning's exercise.  The customary lunch with my dad followed, with the added bonus of Chris, my spouse, getting to join us.  Good food and good company ensued, and I enjoyed the time.  I happened to check my tablet around the end of the meal, to find a message from another family member requesting a ride to an urgent care center near their home.  Concerned, I checked my calendar.  Having several hours before my next appointment, I let them know I was on my way and proceeded to transport them and keep them company while their health was looked into.  This, unfortunately, involved a lot of time in the waiting room.

As a rule, I don't spend a lot of time in hospitals or urgent care, so I had no idea that we could have joined the waiting line for the facility before even leaving (neither did my family member, I think).  I had only brought fun things to do, not work things, so I spent a good period of time doing unproductive (but entertaining) things while we waited.  The waiting area was pleasantly clean, and the staff polite and friendly.  But a certain amount of waiting, when paired with worry for a loved one's health, wears on a person.  It was at least an hour in the waiting room proper, and then maybe another half hour to 45 minutes after they were called back to get checked.

After all that, there was that disturbing moment where one of the staff comes out to get you and bring you in to give you the (bad) news regarding your loved one... which, to my relief, was just "we don't like the look of this thing about their health, can you please take them to the hospital for better testing?"  At that point I rescheduled my first appointment and started taking a serious look at the second one.

In the end, they didn't find anything hugely wrong with my family member, and sent them home.  By that point it was quite late, so I brought them home, wished them the best, and went home myself.  I had it from them and from others, later, that I'd done quite well handling the situation, so that's fortunate.  It's kind of a roulette game as to whether being autistic is going to help or hinder any given situation, and the game tends to be skewed towards it not helping.  But the whole trip was kind of an adventure for me- I'd never seen the inside of an ER, for example, let alone gone through the "okay, why are you here in the ER?" screening process. 

The next day, I woke up tired, and proceeded to be pretty much useless for the entire day. I couldn't seem to motivate myself to do anything (either work or play), and simply wasted time and ate junk food.  About mid-afternoon I finally got tired putting up with myself, so I rescheduled my chiropractic appointment to "leave right now or you'll miss it" and kicked myself out of the house.  I then had to stop myself from buying junk food on the way there and back.

It took LENS (my neurofeedback therapy), chiropractic care, and a long shower to return me to feeling semi-human, and even then, I barely got any work done.  There always seems to be a price that comes with these long outings, scheduled or not, and I never seem to notice I'm getting worn out until it's too late to mitigate it.  This is very much my own fault, as most people at least have a rudimentary system to tell that they're getting overwhelmed... and likely manage to notice it while it's happening. 

This outing, like most of them, I would choose to do again if I knew the consequences.  This family member is important to me, their health and welfare is important, and I value the time I spend with them.  Even if it's time at a hospital, or in a waiting room.  I just really wish an apparent side effect of my autism wasn't "a complete lack of mental and emotional self-monitoring."  That way I could prepare my home for my impending uselessness by buying healthy snacks, and being mentally ready for not accomplishing anything, rather than being surprised and frustrated by it. 

After the trip to Washington DC in January, I had this same style of lethargy, grumpiness, and depression.  And after most holiday trips, the same thing.  It seems terribly counterproductive to have to spend a whole day or more feeling sorry for myself every time I stretch my limits a bit. Hopefully if I put my mind to it, I can find some way to track my mental and emotional wellbeing... but I honestly have no idea where to start.  I do regularly do mental checks of my mood and apparent wellness on outings like these... I just seem, to myself and others, to be doing fine. 

I wonder how common this sort of mental/emotional collapse is for other autistic people. At least a good night of sleep seems to have cleaned up the aftereffects, so that now, on Wednesday morning, I feel better and properly motivated to do work.

Monday, April 16, 2018

Reading the Research: Teachability of Autistic Adults

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 shows for certain that autistic adults can learn new skills and increase social awareness and abilities.  Researchers put together a "virtual learning platform" (ie: a website), which they paired with clinician help.  Participants showed both improved social skills and brain changes, which apparently surprised... someone.  Hopefully not the researchers, too much.

Reading this article further for the reasoning made me extremely miffed.  Apparently, in some circles, it is assumed that old dogs cannot learn new tricks, but only if they're autistic.  In other words, the song and dance that you should start therapy as young as possible has reached a fever crescendo, and it's assumed that if you don't do that early intervention for autistic people, we're just kind of stuck at whatever level we got to when we hit adulthood.  For the rest of our lives.  Sounds kind of grim.

Here's a bucket of cold water for that: Learning and change stop when you're dead.  That old saying "you can't teach an old dog new tricks" is crap.  It's harder for literal old dogs to learn new tricks, just like it's harder for older people to learn new technologies... but they do possess the capability to learn.  The brain has a feature called "plasticity" which basically means it changes over the course of a lifetime.  This assumption that autistic people stop being able to learn in adulthood is just a dreary continuation of the assumption from the early 20th century that people in general stop being able to learn in adulthood.  It's been debunked, and quite a while ago.  Please everyone, catch up with the times.

On a personal note,  I can safely say that if my brain had been frozen in my early 20s or whatever the cutoff for "adulthood" is, I would be flatly unable to be writing this blog, let alone managing a life outside of a school setting.  I would never have figured out why small talk is emotionally important to neurotypical people.  And I certainly would never have managed to marry my spouse.  I didn't develop a good amount of my flexibility until the safety of a school setting was gone, and I was required to manage my own apartment and all my meals and activities.  If I'd been stuck at, say, age 22, I wouldn't have ever managed to share a room successfully with another human being.  Even one as patient as Chris. 

So yeah.  It is NEVER too late to get help for yourself or your kid.  You/they are never too old.  And Now is always the best time to start on things that will take a lot of time. 

In all honesty, the biggest complicating factor here not age, but motivation.  After years of being attacked or avoided by other people, the idea of doing it more to become better at it is not even slightly appealing to many older autistic people.  But that, at least, is a changeable thing, whereas age is absolute. 

Friday, April 13, 2018

Book Review: Freaks, Geeks, and Asperger Syndrome

Freaks, Geeks, & Asperger Syndrome: A User Guide to Adolescence, by Luke Jackson, is a charmingly written set of essays on topics relating to growing up.  Luke writes like he's having an earnest conversation with you on the subjects, which include important subjects like diagnosis, disclosure, health complications, fitting in at school (or not, as was his experience and mine), bullying (same thing), making friends, dating, and being a moral and principled person.  The book contains various small illustrations by Luke's siblings, which add some extra charm to the various chapters. 

As I read this book, I did somewhat wonder if the conversational tone Luke used here isn't a commonality to autistic writers in general.  I think I tend to write in a similar, albeit more pedantic and less familiar, style; that is, I write somewhat like I'm having a conversation with my reader.  In this book, Luke has the charm of an enthusiastic, helpful preteen boy that hasn't quite hit the rebellious stage that often accompanies adolescence. 

I, on the other hand, probably still write like I swallowed a dictionary at a formative age...  I didn't, but that didn't stop my classmates from accusing me of doing so- or at least assuming I read the dictionary for fun- at Luke's age.  I found dictionaries exceedingly boring to read straight, actually.  My vocabulary came from the plethora of books I read as a child, and I simply osmosised the words from context.  Apparently Luke reads a lot too, so perhaps his next book will have a tone more similar to mine. 

Another similarity here is the use of idioms throughout the book.  While many autistic people find idioms and common phrases to be a stumbling block, Luke tosses them liberally into his book.  Sometimes there's an explanation right next to the idiom, sometimes you have to reference the explanations of them at the back of the book.  But either way, the author thoughtfully made sure his autistic readers would understand the strange twists and turns of English. That's a kindness, because there are 45 of those idioms listed in the back, and Luke is British, so not all the phrases were familiar to me. 

I think I mostly made my way through idioms by asking people when I ran into them, or by puzzling them out from context and the specific words used.  "Loaded for bear" is one I learned recently.  I had to ask about it when I heard it first, but the explanation made enough sense that I won't forget it.  Basically, as settlers went west on the Oregon Trail or other trails, they would need to go hunting sometimes to get fresh meat.  This was dangerous, because deer and bison weren't the only things out there.  So some cautious settlers would bring ammunition to hunt bears as well as ammunition for deer and game animals.  Thus, going somewhere "loaded for bear" means you've made yourself exceptionally well-prepared and ready for trouble if need be. 

Something else Luke and I had in common was our experiences with martial arts.  Right down to what he calls dyspraxia and I call "just not being good at active things."  In essence, neither of us were very good with hand-eye coordination or motor skills.  Naturally these things can be trained... and that's more or less exactly what happened with his Taekwando experience.  I don't agree with Luke that it's the perfect exercise for autistic people, but I'm glad he finds it so predictable, structured, and helpful.  I suppose it's not a perfect comparison: I took Tang Soo Do, which is a different, older, less sport-inclined style. 

But still, it did give me confidence, as it did him, and did train me how to defend myself a bit.  As both of us were targets of bullies (him much, much worse than me), this is very important.  Not merely that you can disable a bully and get away, but simply knowing you have that capability is very reassuring.  It makes you feel, to yourself, less like a potential victim and more like a self-validated person.  This is particularly important for people born female, sadly, as the crime statistics easily show. 

One last thing to point out.  Autistic people, as you probably know from reading this blog, tend to have unusual ways of looking at things and understanding things.   Luke is no exception, and two of his oddities struck me as important to point out.  First, while an autistic person's deep and abiding interesting in a subject or field is very definitely called a "special interest" or "obsession" in the US, Luke has opted to reject those words and instead has chosen "specialist subject" as his description for it.  This is, I think, a good development, as many autistic people make their specialties into jobs.  It's needlessly cruel to start with calling someone's favorite hobby "an obsession" before it hits that actual mark. 

The second thing Luke introduces is calling a diagnosis a signpost, rather than a label.  The idea is that rather than a diagnosis being a box, in which you put people and they supposedly fit perfectly, a diagnosis is a signpost that directs you where you might head next with your life.  This is far more accurate than the label/box idea, particularly when it comes to autism... the saying is that "if you've met one person with autism, you've met one person with autism."  We are often very different, and very different things help us thrive and have full lives.  Instead of assuming the diagnosis will tell you who you are and what you need to be doing, the signpost idea is more of a suggestion... which is far more helpful.  This is in keeping with his general attitude through the entire book, which is a modest, "Well I'm still young yet, I don't know everything." 

Read This Book If

You're autistic in the adolescence age range, are a parent with a child in that age range, or simply want to see life from a British adolescent's point of view.  Luke is markedly coherent and easy to read, bringing a youthful and disarming honesty to the subject of growing up autistic.  He has had very difficult experiences, but is remarkably positive about things overall.  This is not an exhaustive guide to an autistic adolescence, but it's a fine primer, and it gets every subject it touches pretty much correct in my opinion.  Brief research tells me this author wrote another book last year regarding adulthood... I may see if I can find that and see where life has taken him. 

Wednesday, April 11, 2018

Legwork and Life, week of 4/11/18

This week seems to have been a week full of trying and failing to establish routines.   I've been trying to eat better, and I made buttermilk rosemary chicken with lots of vegetables and various other good, healthy meals... but I also ate lots of Easter candy and am still failing to lose even 5 pounds.  I check twice a week on the scale at my parents' condo complex.  Definitely not losing weight.

I'm trying to keep up with my 5 day a week exercise schedule, but I've felt so bad in the last week or so that I think it was only 4, or maybe 3.5 since I didn't do cardio one of those days.  In the meantime, I seem to be sore upon waking... and have stiff and crackly joints in general.  That might be in part because I'm not really managing to sleep on my back... but I'd kind of hoped otherwise because I made a point of getting a huge, fluffy pillow stuffed between my knees for when I sleep on my side.  I figured it would be a good stand-in tactic until I could get more comfortable sleeping solely on my back...

It seemed to be working, but then I washed my pillows.  Both my pillows are memory foam, which apparently holds water like a sponge.  Which wouldn't be a problem, except for the aforementioned bigness and fluffiness.  It's really hard to wring out something that's bigger than your torso.  Normally I think I'd just leave the silly pillows outside, but it's still quite cold outside, so I'd just get pillowsicles.  We have a nice large deck, though, so on nicer days I might air dry some laundry.  In the meantime, I'm bodily wringing out my pillows.  And not using them to sleep on.  So I slept on my side and today my knees hurt.  Oops.

This week I also managed to forget my supplements two days in a row, which made a mess of my head.  My anxiety spiked and stayed high even after I started making a point to remember to take the supplements.  So yeah, overall it was a pretty shoddy week for wellness. 

In happier news, though, Chris and I managed to locate a pair of bookshelves for our home.  They were in a consignment furniture shop, and they roughly match the wood color of the condominium itself.  Also they were only $40 each, which was nice.  The quality is not amazing, as you can guess from the price, but they're sturdy enough once leaned against a wall, and they should do for a good while.  Eventually Chris and I might see about getting custom made furniture, and making everything match... but that's going to be a project for a day when we have scads of money... so not anytime soon. 

Also, we managed to get our taxes done, though we cut it pretty close this year.  Taxes are literally due next week, and we only just managed them.  We won't be able to do that next year, because we'll need to get them done professionally.  Buying a house tends to complicate your taxes, particularly the way we managed doing it... so that'll be messy.  But a trial for next year, so I guess I shouldn't worry about it.

Instead, I should go look at more pictures of cute puppies and kittens.  I read somewhere that helps lower blood pressure and stress, and as it happens, Twitter has lots of such pictures if you go looking for them.  So as this seems to be a pleasant activity with health benefits, I've been attempting to do it before bedtime on a regular basis.  Because of how badly the rest of the week went, I'm not 100% sure if it's had positive lasting effects... but it's at least nice at the time, and doesn't involve consuming calories, so hey, good enough!

Monday, April 9, 2018

Reading the Research: Facial Expressions Aren't Just Moods

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 an important facet of nonverbal communication: the main reason for facial expressions.  We're taught, traditionally, that one's face expresses one's mood at the time of making the expression.   But as far as I can recall, that's all I was taught.  Happy faces mean the person is happy.  Sad and angry faces mean the same. 

The fact is, that's the smallest portion of what a facial expression is used for.  The vast majority of its use is to influence others.  Our expressions do the talking.  If you're walking around a grocery store scowling, you may be personally indicating to yourself that you're in a bad mood (but you could also be frustrated, constipated or in pain)... but you're also broadcasting to everyone around you that you should be left alone.  Or a person may be utterly miserable due to life circumstances or current pain level, but when asked about their favorite subject, or put into a situation where they're required to smile to be polite, they will smile- not because they're feeling better, but because the subject matter or situation merits it.

The article also makes an example of the "disgust" face.  If used only in the internal sense, meaning to project our moods, we would only use this face to express having an upset stomach or smelling something gross.  But the article points out that we also use the same expression to express a dislike for whatever music happens to be playing, to let other people know we don't like that type of music.  I suppose I always kind of thought one led to the other... but perhaps a better example would be the absence of such an expression.  In polite company, even if you don't like the music, you're usually better off keeping your opinions to yourself.  So while you might hate polka, the host loves it and instead of making a disgusted face, you would school your face to polite stillness or a faint smile, to specifically NOT indicate you hate your host's musical choices.  This facial expression choice, then, is a form of white/polite lie. 

The article also points out that people smile more at funny videos when they're watching them with friends- even if the friends are at a remote location watching at the same time.  I think, in retrospect, I may have noticed this effect.  Things that people said were funny often just...weren't, much, to me when I checked them out later.   But I assumed it's because I didn't have as developed a sense of humor as most people, or a different sense of humor.  I watch most of the media I consume alone, and it's a pretty rare piece of work that can make me smile regularly.  I have a few webcomics that can do it, and I treasure them all the more for that... but I guess perhaps the fault is not specifically mine. 

The quote from the main researcher at the end of the article seems spot on, too.  "When we are with others, we're always checking to see how they are reacting, and they make faces when we see them looking for our reactions."  I think most NT people automatically learn to do this somehow.  And I've read a book that purports to teach you how to teach autistic people to do this.  To its credit, it at least did it in a fun way, making a game out of it for the autistic child, rather than making it drudgery.  Speaking from personal experience, it's drudgery for most of your life, so you can at least make it fun to start with.

But that actually brings up the question as to how I learned this skill.  When I was reading this article, I stopped and went, "Wow, this is totally correct, but why didn't I already know this consciously?"  Nobody taught me in the most direct sense, using any method.  I also wasn't exceptionally observant as a child.  Most of my memories revolve around internal (personal) thoughts and observations, rather than external (thinking about others) ones.  My best guess is that I learned it very slowly, over the course of years, by haphazard observation.

The first piece of the learning is already somewhat stated above: by wearing your emotions on your face, you're broadcasting them, and people will react to them.  I'm pretty sure that's exactly what happened, and I must've taken notice.  I was likely taught, as everyone else is, that facial expressions are how you display emotions.  So that was what I did... and people did react to it.  That likely taught me, without somehow directly teaching me, that people use your face as an information point for how to act in a situation.  Learning NOT to display those emotions was probably harder, and probably required someone (likely my mother) to say something like: "Well, even though you feel that way, you shouldn't look like it if you're going to be in polite company."  I have a pathological tendency towards bluntness and honesty, so this inversion probably took a lot of time to learn.

That seems like most of this concept, though: either displaying an emotion or not doing so, depending on how you're feeling or wanting the interaction to go. 

Friday, April 6, 2018

Improving the Autistic Future

The transition between high school and adult life is almost inevitably a difficult one for autistic people and their families.  The question of college, trade school, or job is a difficult one for neurotypical young adults, and when you mix in autism, it becomes exponentially more complicated.

The assumed pathway, at the time I was growing up, was that you went from high school to college.  That was what was expected, and it was what I did.  But many autistic people who do this find they are ill-prepared for that transition.  A lot of those people return home, feeling like massive failures as people, and like their lives are ruined forever.

Why does this happen?  Well... Part of it is that our schools aren't teaching us the day-to-day skills necessary for being a functional adult.  Things like what laws your country has, how money works, how to vote and register to vote, and how to make a budget.  Have a well-made song that covers this subject admirably.  I have no idea if the performer here is autistic or neurodiverse in any way, but he's absolutely right.

Something he doesn't cover, by the way, is the loss of art, music, technical, and theater programs in favor of ever-more academics and sports.  Though by the video, I'd bet he'd have an earful about it.  The point of school is to give you broad base, required and everyday knowledge and introduce you to all sorts of interesting subjects so you can choose for yourself what things you want to study or make a career out of.  Removing these programs ensures that the only path forward autistic (and neurotypical) people will see is college.

What's the problem with that?  Well, not everyone needs or wants to go to college, first and foremost.  Continuing your education is excellent, but if you love cars and excel at taking apart and putting together engines and machines, you hardly need to go to 4 year college to find out you'll make a great car repair person.  The fact is, not all special interests align with a college education, and no one should be forced to shoulder the lifetime of debt that comes with that education.

This is particularly true of people on the spectrum whose opportunities are more limited due to communication difficulties, chronic health problems, intellectual disabilities, and other factors.  Just because these people don't care to go to a standard 4 year college, or wouldn't be able to get through it, doesn't mean they can't have happy lives. It's just that our definition of a happy life may look a lot different than "high school -> college -> marriage -> house -> kids."  Deviating from this pattern seems incomprehensible to many parents, but why should it be?  Autistic people can have strong interests and derive a lot of joy from them.  Why can't we have lives based around those?  It's certainly possible, as this article by one happily surprised parent shows.

I read somewhere that "the grand essentials for happiness are: something to do, something to love, and something to hope for."  I think this is probably true, assuming basic needs (food, water, shelter, etc) are met.  Maybe a bit simplistic, but it seems accurate enough.  Without something to do, you feel like you're wasting your life.

A job can fill this criterion, assuming it's not actively making your miserable.  But it doesn't need to be a paying job if that's not feasible: volunteer work is also a way to use one's efforts, and sadly, it's the most accessible work for autistic people.  But it can lead to paying work, also.  The volunteer may do such a good job, and make it known that they would like to be hired, that the organization chooses to hire them.  Volunteer work also lets you learn new skills that you might otherwise not have ever picked up, which can then be applied to other parts of your life, or even other jobs.

The something to love is a bit harder.  "Something" does not need to be a significant other, or a romantic partner.  It can be your family, for example, or a group of friends.  It can also be a pet.  Support animals are popping up more and more as ADA-sheltered accommodations.  The responsibility of supporting an animal can also be good for peoples' wellbeing.  They're a lot less complicated than people, and often much less judgemental.  Your cat does not care if you're autistic, and your dog loves you regardless of whether you look and act "normal."  Other kinds of animals can be helpful in this way, too.

I'm not sure if I'd term my childhood pet corn snake as a support animal.  I do hear snakes can be affectionate, but I don't think mine was.  Dogs are much better at being lovable, and cats too, somewhat.  I've also heard of pet rats being affectionate, as well as ferrets, hedgehogs, and of course birds (especially parrots and macaws).  Any of these animals could serve an autistic person or person with other disabilities well, by providing a friendly, non-judgemental companion for us to talk to and be with.

At least with autism, you can definitely make an argument for the "something to love" being a special interest, too.   Our passions can be all-consuming, and that can be good.  It can lead to a job, or to volunteer work and meeting people.  Some parents decide their autistic children's passions are distracting them from the demands of life, and work to undermine them and keep their children away from them, in hopes that the interest will fade.  This is remarkably shortsighted unless the interest is directly dangerous.  It's better for everyone if the passion is worked into the demands of life.  Schoolwork can be phrased in terms of comic book heroes, and animals or computers or classic books made into jobs (vet tech/animal shelter volunteer, home tech support and repair services, and librarian/library volunteer, respectively). 

Something to hope for is naturally the hardest.  Peoples' goals vary immensely.  With the stress of raising an autistic child and running a family, I feel like parents tend to miss or overlook their children's goals.  Don't assume that a person doesn't have goals, just because they haven't communicated them to you.  A goal might be as complicated as, "I would like to get married, have children, and live in my own home," or as simple as, "I would like some privacy for an hour every day to engage in my hobbies."  As much as is possible, it should be a priority to help autistic people achieve our goals.  Even if those goals don't line up with what society (or you personally) prescribe.  Perhaps especially if that's the case.  We are unusual people, destined to lead unusual lives.  Help us lead to way for others to do the same. 

Wednesday, April 4, 2018

Legwork and Life, week of 4/4/18

Well, Holy Week has come and gone.  I'm afraid I was a bit of an underachiever when it came to attending the various church services.  There's Maundy Thursday, Good Friday, and at least two Easter services most years... and of those, I went to exactly one: I was scheduled to do sound (run microphones, attend to volume levels, etc), so I went to that service as I normally would. 

Naturally, it was fancier than usual.  More instruments, more people, and more complicated music.  My church has a habit of doing a rendition of the Hallelujah chorus each year, complete with timpanis (kettle drums), trumpets, and such.  They also invite the congregation, many of whom are musically literate, to sing along.  They provide music scores and everything. 

However, I'm almost invariably at the sound board at Easter, for one reason or another.  So this year, like many years before it, I took my copy of the music and sang the tenor part by my lonesome, from the back.  I'm sure it sounds kind of strange, a low but not-as-well-supported-as-a-man's-voice singing along with the men.  But the tenor part is kind of high, honestly, and there never seem to be enough men to sing the part.  So that was how I was allowed to learn it, years ago when I took part in a community choir for a year. 

Beyond the church service, there were a couple family events that I was invited to.  There was a Sunday brunch that went fairly well, save that I was low on energy and emotionally upset for reasons unrelated to the brunch.  It was a semiformal affair, which meant fancy clothes, which normally means discomfort.  And admittedly, my shoes were uncomfortable.  But thankfully, the rest of my outfit wasn't.  Back a year and a half ago, I needed a fancyish outfit that wasn't a dress, and one of Chris' aunts was kind enough to help me shop for one.  I have then proceeded to wear it pretty often, because it's nice-looking and formal but I don't hate it. The other event was another dinner, so kind of similar, but with more people. 

Other than those two things, Easter was pretty unremarkable.  There was no Easter egg hunt.  Nobody got me chocolate.  I didn't prank anyone's stuff by hiding Easter candy in it.  I used to do that last thing every year when I was in college.  I thought it was boring that I didn't get to have Easter egg hunts in college, so I made my own.  It had triple upsides: it was simple and low effort to do, it made the person happy, and it continued to make them happy as the year went on, because they invariably never found all the candy the first time.  So they'd keep finding pieces of chocolate the rest of the year, especially after finals when it was time to pack their things up.  I kind of miss doing that, but it's not like I could sneak into some college student's room just to hide candy everywhere.  That would be all kinds of creepy. 

Anyway, in lieu of being given candy, I proceeded to buy my own after the holiday, when it was 50% off.  There's never as much selection that way, but on the bright side, I did get several pounds of candy for less than $15, so as long as I can ration it, I'll be good for a while. 

On a less comforting note, I had some x-rays done at my chiropractic place after I was told a particular type of adjustment isn't supposed to hurt... and it turns out my hips are crooked.  One is higher than the other on the x-ray, and twisted around a bit, too.  The doctor seems to think this isn't a huge problem, but he does think it explains the pain.  So now I have stretches to do, and I have to learn to stop sleeping on my side.  I wasn't clear if the stretching was every day, or just after exercises... but either way I'll be doing it at least 5 days a week, so surely that will help.  I hope.

Other than the hip oddity, my lower back seems well spaced and lined up, though, so that's something to be thankful for.  I'm not sure how well I'm going to manage only sleeping on my back.  I managed it last night, but it was only with great effort.  It feels like my back gets "flat" or something, and it's much more comfortable to flip between sleeping on my side and sleeping on my back.  But it's probably a doable change... I used to sleep on my front and had to break myself of that habit because of the bad things it was doing to my neck. 

Monday, April 2, 2018

Reading the Research: A Stranger in a Strange Land

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

Today's article covers the beneficial effects of living in a foreign country.  What does this have to do with autism?  Well, one of the alternative names for autism is "Wrong Planet Syndrome."  This is based on a half-joke, half astute observation that autistic people act and speak like foreigners to our home countries.  The joke is that we must, therefore, be aliens on the wrong planet.  I believe this phrase was coined by humorous autistic people, and wrongplanet.net was formed as one of the earliest gatherings of autistic people online. 

The article says that people who live for a long time abroad tend to engage in more self-reflection and reflection about life and cultures in general.  This is good, because I've noticed a lot of neurotypical people seem to live unexamined lives. On my more crabby days, I sometimes say that NT people float through life, whereas I have to crawl. 

As a child, I spent a lot of time doing hard thinking about who I was and why the world is the way it is.  I still do this now, though not as often as I have less free time to commit.  I found it a highly valuable activity: by taking the time to figure out why these things existed, I gained a lot of valuable information.  For example: driving laws exist to standardize the experience of driving.  While other people can never totally be made predictable, by setting specific rules for how to handle situations, you make the flow of traffic more efficient.

Small talk is another one, but its function is less obvious.   Autistic people naturally lean toward wanting to be good at things, and tend to be very logical and literal-minded.  Therefore, talking about the weather, which is boring to most people, seems extremely pointless.  Why would you not spend the time talking about interesting animals, or laws that need changing, or even philosophy?  At least that would be novel, rather than saying for the 1438th time, "Gee whiz, it sure is raining out there."  Or talking about a sports team, when many autistic people could not care less.

But sadly the point of small talk is not information or idea exchange: it's to convey emotional connectedness and similarity.  The words you specifically say aren't as important as the meaning you're conveying behind them, which is, roughly, "I too experience this life in a similar way to you, and we have this thing in common."  For neurotypicals, this connectedness drive is more important in most cases than the drive to be good at things.  In autistic people, it's usually the other way around. 

Without spending time doing self-reflection, I would never have realized these things, so when the article talked about people having clearer self-images and understandings of their personal values, I thought of myself, and then of many other autistic people I've met.  We have particular ways of doing things, and we like to stick to them.  We often have strong personal values and are influenced less by our respective cultures.

So I wondered, then, whether some of these effects of living abroad might explain part of why autistic people are the way we are... While I was thinking about it, I remembered that I've read, multiple times in books, that it's often easier for autistic people to fit into other cultures.  Our lack of understanding of social norms and various personal oddities, in other cultures, are passed off as the mistakes of a foreigner, rather than the mistakes of a person with disabilities.  This is immensely freeing and helpful, as in our home cultures we are always penalized for being what we are.  Daniel Tammet, author of Born on a Blue Day, described such freeing experiences in his book.  He, a citizen of England, went to Lithuania for volunteer work.  He proceeded to learn the local language, make friends, and in general have a very life-enriching time.

In general, then, I rather wonder whether it wouldn't be a valuable experience for better blended, and more independent autistic people to visit other countries. Or, I guess, given the benefits outlined here, pretty much any person.