Wednesday, August 23, 2017

Reading the Research: Twins, Genes, and Autistic Traits

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 what causes autistic traits, which has been an argument pretty much since autism got onto the public radar.  After all, when you find out your kid isn't normal and probably never will be, the first thing a lot of parents ask is, "oh God, what did I do wrong?"

The answer, according to this article, is "Absolutely nothing."  This study is one of literal hundreds, if not thousands, to address the question, and the arguments have gone back and forth between "nature" i.e. genetics, and "nurture" i.e. environment, parenting tactics, diet, exercise, neurotoxins, etc.  I suspect, with sufficient research, you could come up with a docket full of studies that loudly proclaim that autism is definitely mainly caused by either side.

I'm bringing this particular study to your attention because it studied twins, and thousands of them at that.  Usually psychological studies are very limited in their sample sizes, such that a hundred or so participants is regarded as "pretty decently good." In this case, the study was able to draw a large sample size (over 19,000 pairs of twins, both identical and fraternal), but had to rely on parental perspectives and reports for its data.  While parents know their kids best, there can also be bias, which decreases the reliability of the study.  Still, a sample size of nearly 39,000 twins is pretty impressive.

The current thinking for "what causes autism" is that genetics are involved, but so are environmental factors, such as air pollution, diet, traumas, etc.  This study pins the heritability of autistic traits at over 75%, moreso for girls than for boys.  It also suggests that the same genes are responsible for girls being autistic as for boys.

As for me, I've never personally seen my own genetic records.  But if autism runs in the genes, I can point to a few family members that have or had some autistic traits.  Maybe not full blown autism, like myself, but enough that it might explain me.

Whatever the cause of autism ends up being, I'm keeping tabs on my niece and nephew.  If either of them end up being autistic, my brother and his wife might like my help sorting out what to do with their kid.  They're both highly educated, intelligent people, and I'm sure they'd do a stellar job without me, but there's nothing like first person experience to tell you what books can't.  Which was kind of the impetus for this entire blog.

Tuesday, August 22, 2017

Legwork and Life, week of 8/22/17





As you can see, I got my hair redone.  It's quite short, but I mainly used this picture because it conveys how blue they got my hair.  This is actually darker than we were aiming for, but the professionals were kind of expecting me to wash it in warm/hot water a few times, and that would make the color closer to what I wanted... which was the color of my wedding dress.  Chris (my spouse) actually lent me the scrap of the dress fabric he carries so they'd have a color reference.

Other than the length and difficulties related to getting it to behave, I'm pretty pleased with this iteration of hair-adventure.  Chris seems to be also, as he's made numerous approving noises.  So it's nice that this little adventure is turning out well.  The color is quite dark and deep now, but it'll fade as I shower more and might eventually turn back to platinum blond, which was a midway step between my hair color and the blue. 

Also before they cut it super-short.
I got the hair fixing done early in the week, which gave me time to adjust to it before I actually had to go out and interact with people.  Which was nice, because I definitely needed preparation for people remembering me in the grocery store line.  I was jokingly accused of following another lady while at Meijer because she recognized me from Costco, where I had also stood in line with my groceries behind her.  I wasn't super-graceful at handling that situation, but the lady was kidding and seemed good-natured, so I'm not going to worry about it too much.

This week I also got a good hour's worth of exercise by helping out a bit at church.  I think the reason was carpet-cleaning, but I honestly forget why all the furniture in the church had to be moved around.  Anyway, I missed the "moving the furniture out" on Sunday, but did catch the "moving the furniture back" on Friday.  It's not a mega-church or anything, but my church does have a number of classrooms and offices, which each use tables, chairs, carts, etc.  So there was plenty to do.

It actually ended up being a huge ego-booster for me.  I'm biologically female, and my specific genetics gave me pathetically weak arms.  That's always been kind of a downer for me.  But the genetics sent all the arm strength into my legs, so I have these beefy doom-thighs that give me enough strength to carry most things by virtue of stubbornness.  Which is how it ended up being me and the head coordinator-person doing all the heavy lifting for the big tables and such.  The coordinator's wife also came to help, and she was more visibly muscular and in-shape than me, but I think she got busy directing the other people that showed up.  So there was that.  I stuck around to the end, got the job done, and the coordinator seemed happy about it.

The only downside was that I only half-remembered that very important rule of lifting, to lift with your legs and not your back.  So despite not being 30 yet, I did in fact anger my lower back and it has been whining at me every day since.  I put ice on it for literal hours and took ibuprofen on the advice of an older friend of mine (who used to be a physical therapist) and I suspect that's why I'm not really miserable right now, just kind of annoyed.  I'm not too worried about it, anyway.  I'll be seeing the chiropractor this week, who will give me an earful I'm sure.  But also likely be able to help a bit. 

The last thing of note is that I went to see the eclipse yesterday with friends.  I didn't travel far, so I didn't get into the path of totality or anything, but it was still kind of a fun experience.  These kinds of events, I'm coming to realize, may not be earth-shaking to me in person, but they're still rare events and it's wise to take advantage of them to see people and take a break from regular life.  I didn't manage to snag any eclipse-safe glasses, sadly (the Internet stores were all out of them, or at least the ones that are actually safe), so I only took peeks here and there and checked out NASA's barrage of cameras around the US.

I suppose it wouldn't have mattered that much if I had found glasses, though.  It was cloudy for a good portion of the time.  But between my phone and my friend's, we were able to watch the moon entirely block the sun (totality) from three different locations, one after the next.  It was pretty cool to see and hear all the people cheering, as well as actually see the corona around the moon.  The NASA announcers were entertaining, too.  Like sports announcers, but nerds and somewhat unpracticed. 

Friday, August 18, 2017

Book Review: Understanding Autism for Dummies

Understanding Autism for Dummies, by Stephen Shore and Linda Rastelli, is one of those yellow subject-based "For Dummies" books that I silently promised myself never to pick up when I was younger.  I always found the branding rather insulting, regardless of how little I knew about a subject.

So naturally now you're likely wondering why on Earth I broke this promise to myself.  Well... the first author is the reason.  Stephen Shore is an author I've run into briefly on my adventure through autism literature, and I've never read one of his specific works.  However, even the brief exposure I've had to his philosophy and work has impressed me.  So when this book came up on a search of my library, I reluctantly checked it out.

Upon actually opening the book, I was promptly flabbergasted by the first page, which was a two-sided mini-reference page.  There was lots of good info on there in little boxes, but I was most grabbed by the "Emergency ID card" for autism.  The print was maybe a little small to be handing to an upset police officer, but it did have a space for emergency contact numbers. Also important information about autism, like common behaviors.  "I may: have difficulty speaking, appear deaf, not understand legal issues." And suggested things to do, like "speaking slowly and softly," "giving me time to respond," and "warning me first if you must touch me." 

I'm not sure how I feel about carrying a card identifying me as autistic, but of course, I'm not who the card was designed for.  Usually in emergencies, I can still communicate in words.  This book is meant to be a comprehensive reference for the entire autism spectrum, despite being co-authored by a relatively well-blended ("high-functioning") autistic person.

Once I got past the first page and got to the table of contents, I was struck by the fact that this book is over 10 years old, but had a lot of "thinking about the future" sections.  Important things like "how to transition from high school to jobs," "how to make friends after school is over," and "options for financial planning."  In reading through those sections much later, I was pleased to see advice for both the autistic person, and for parents and guardians.

I was also pleasantly surprised to find a subsection on sexual relationships and sex education.  It was fairly short, but had some solid suggestions, and included a brief commentary on sensory issues.  At some point I'll be less reserved about my personal sex life, but suffice it to say that sensory issues do not politely go away just because you're trying to be intimate with someone.

Relatedly, I was also pleased to see the book strongly suggest sex education for all individuals on the autism spectrum, not just the ones likely to find a partner.  The authors adamantly proclaim that almost all autistic individuals, no matter how well they blend into society, have a sex drive.  So you need to teach appropriate behavior to deal with that, and sooner rather than later.

In addition to these things, of course, the book also covers the "what is autism," "getting a diagnosis," "how to choose treatments and therapies," and "how to work with schools to get appropriate education."  Each of those is a wide subject, and each chapter has a few books listed as recommended reading.  I was reasonably impressed with the section on working with schools, which included best practices for IEP (Individualized Education Plan) meetings.  I've attended several informational meetings regarding how best to make and IEP and communicate with the schools, and it pleased me to see much of that advice here.

The book is still ten years old, naturally, so its explanation of autism and understanding of the special diet aspect of improving symptoms is minimal.  But it does bother to have a section for that treatment at all, which makes it ahead of its time in some ways.  Unfortunately, I can't say the same for the list of resources at the back of the book.  About half the resources in the sections I looked into were no longer operational, missing, or had been moved.  That's maybe not surprising, given how things change.

Read This Book If

You are relatively new to the autism world and need a general overview on everything.  Whether you're an individual on the autism spectrum, a parent with an autistic kid of any age, or an interested professional of any stripe, this book does serve as a pretty effective across-the-board reference.  After attending conferences, advocating, and reading dozens of books, I personally didn't find a whole lot of new information to learn.  But it's the most comprehensive "guide to autism" I've run across to date. 

Wednesday, August 16, 2017

Reading the Research: Disabilities and Crime Rates

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 the vulnerability of the disabled population, and the crime rate associated with it.

This is usually common knowledge among most adults with disabilities, but the population in general seems entirely oblivious of it: disabled and mentally ill people are not the perpetrators of crime, they are statistically its victims.

Popular media (looking at you, The Amazing Spider-Man 2) likes to depict the mentally unstable as time bombs, or unhinged menaces.  In The Amazing Spider-Man 2, a quirky, downtrodden, "not-quite-all-there" electrical engineer falls into a vat of genetically engineered electric eels, causing him to become able to generate tons of electricity himself.  He proceeds to use his newfound powers to rampage through the city, causing blackouts and chaos.  In the end, he is outwitted by the hero and killed.

This mirrors the framework I've seen portrayed in newspapers, time and time again, about shooters in schools.  While the truth is that we don't know a singular cause for why people take guns into schools and shoot their classmates, teachers, etc, the media loves to point fingers at any diagnosis that shooter might have had.  Several of them in the last few years might have had autism.  Should we then be wary of every person with autism?  Should we then expect those people to eventually turn up in a school with guns?

I shouldn't have to actually answer those questions, but the correct answer is a resounding NO.  We are no more dangerous than any other person.  Statistically, even less so, because we tend to have less power and less access to things like guns.  Instead, we are three times more likely to be robbed, assaulted, raped, and shot.  And 1 in 5 of these victims were specifically targeted because of their disability.  Human predators, like any other predator, go for the weakest-seeming individuals.  Except humans are supposed to be more moral than animals...

Tuesday, August 15, 2017

Legwork and Life, week of 8/15/17

A lot of good things happened this last week, which is a nice change of pace.   It wasn't all sunshine naturally, but my little list of stuff to write about is 1 bad thing to 4 good ones, so y'know.  Not too shabby.

The one bad thing was that all the Self Advocates meetings I was involved in ended up being a bust.  I entirely forgot the Tuesday meeting last week that I was supposed to run and the Executive committee didn't meet. To top it all off, the problem member I've been complaining about got her act together... for two weeks.  Then apparently she opted to change to a different committee, which leaves me shorthanded and excessively frustrated.  I'm seriously considering just dropping the whole obligation.  It doesn't make me happy, it doesn't pay, and it definitely detracts from my sanity.  Unfortunately, it's also extremely important to changing the state and the country.  Ugh.

On the other end of things, I'm proud of myself for consistently playing DDR (Dance Dance Revolution, the jumping/walking to music game).  I've been doing 2 days a week for 15-30 minutes, but I'm upping that to 3 days a week because my Wednesday walking partner is going to be out of town for about a month.  I think I'll be able to make the transition to 3 days a week easily enough, and I figured out that I could use "Endless Mode" to make for a more seamless aerobic workout.  Normally when you play you have to choose each song and difficulty.  On Endless Mode, the game chooses for you automatically, stringing five songs back to back, but you can preset the difficulty ahead of time so it's not too hard.

Another happy thing this last week was Chris and I reaching our 9 month date since getting married.  We haven't killed each other, obviously.  It ended up being on a Sunday, and we had a little check in with the premarital counseling person at our church.  The counselor basically wanted to know how things were going, if we had any concerns, etc.  We brought up the chore list issue, which has been a stumbling block for us, and he's offered to be a mediator for when we decide to rework the list.  So we might take him up on that.  Chris and I both hate chores, but they do need to happen, so it's not exactly an issue that's going to go away.

After we did the counseling, we went home and started work on one of my favorite dishes these days: beef stew.  In general, my meat consumption is fairly low, and is mainly chicken and ground bison, so steak, stew meat, and other less common meats are a real treat.  So Chris has started making beef stew on occasion, using stew meat from a local farm with the Animal Welfare Approved certification.  The meat is therefore cruelty-free and extra-delicious.  However, the stew itself requires a lot of prep work, particularly since when he makes it, it tends to be a double and triple recipe. So Chris redeemed one of the "give me a hand with this" coupons, and I helped him chop a whole lot of fresh vegetables.  Carrots, onions, potatoes, green beans, and celery all went in, much of it from a local farm market.  The result was exceedingly delicious, and I may have eaten a bit too much of it when it was done.  The rosemary bread Chris had baked the day before was a really tasty complement, too. 

It was a lot of work, but it paid off nicely.
The last happy thing is the most recent: I'm getting my hair cut and colored again.  Brighter blue this time, but still a relatively dark blue.  Sapphire-esque, I guess?  Rather than the dusky bluish purple it was before.  Chris actually has a scrap from my wedding dress, which I'm going to bring to match the color with.  Should be a fun experience.  I need to make sure to play DDR extra long before I go, though, because apparently your hair should be kind of oily for best coloring results.  And I sort've left my shower until the day before, and my hair was full of lint and bits along with the oil.  So I gotta grease my hair back up again so the color will take nicely.  Much DDR shall ensue!

Friday, August 11, 2017

Pokemon GO, DDR, and WiiFit: The Evolution of Exercise

I was doing my Monday's exercise this week when it occurred to me that my views on exercise and gaming might make an interesting explanatory Friday post.  You see, if virtual reality catches on, I fully expect a nice big armada of exercise-based video games to sprout forth.  In present day, there are only a few options.  Depending on who you are, you may have heard of none of them, so let me explain some of the biggest ones briefly.

Pokemon GO

An exploratory walking game, Pokemon GO ties into the popular series Pokemon, first introduced in the late 90s.  

You may recognize parts of this, perhaps.
The idea of Pokemon was that all the animal species in the world are fantastical monsters (called Pokemon), from electric rats (Pikachu) to adorable fire lizards that grow into dragons (Charmander to Charizard), to various kinds of birds, bugs, and other fauna.  As the main character in the Pokemon games, it is your job to go meet them all, learn about them, befriend them, and become the best Pokemon Trainer in the world.  There are a lot of ways to play, but the original games had two versions: Red and Blue (Green, in Japan).  That was so you would play with a friend, and have fun together.  

Pokemon GO takes that same concept, puts it on your smart phone, and bids you go explore your neighborhood and town.  You find Pokemon everywhere, from your front porch to across town at the library.  In short, the game rewards you for getting off your couch and walking or jogging around town.  You don't get credit if you drive, because the game tracks how fast you're going and nobody walks at 40 mph.  

I played Pokemon GO for over a year, but they made a lot of mistakes when they launched the game and over the months since.  They're only now getting their act together, but it was too late, I ran out of patience.  It's a shame, because I explored a lot of parks and parts of downtown while I was playing.  

Dance Dance Revolution

If you were relatively young in the 90s, this entry needs no explanation.  However, for everyone else.... Dance Dance Revolution (DDR) is a competitive dancing/movement game.   Unlike Pokemon GO and most other video games, it uses a controller for your feet instead of your hands.  

Yes, really.
To play, you stand on that, listen to the techno music and press the arrows as they get to the top of the screen, which can look like this:


The arrows, as you can see, scroll up to the top, at which point you're supposed to hit the corresponding button on the controller.  Do so in time with the music, and you'll get a better score.  "Perfect" means you were spot on.  "Great" means you were just slightly off, "Good" means you were a bit off, etc.  The people playing in this video are far from perfect, as you can see, but in some circles in the 90s, perfection was an art form with this game.  There were literal competitions that paid prizes and even money.  

If you're still confused as to what this actually looks like in practice, I took a crappy video of myself doing a relatively easy song. Unfortunately, Blogger apparently doesn't like my crappy video, and it's not playable, so I found you a video of a couple playing instead.


If you don't want to watch the whole minute and a half, they're doing a middle-fast song, which involves plenty of steps at a reasonable pace.  It also involves jumping in place to hit two arrows at once, sometimes in quick succession.  The guy shifting his mat halfway through the song?  Very legitimate, though really experienced players usually try to simply adjust for it until the end of the song.

Basically, this video game goes from "gentle walking in place" to "hop at crazy speeds 'til you drop."  It tests your fitness and your balance at the same time.  Each song on the CD comes in three difficulties, which gives you replay value and the possibility of learning how to play.  Also, Dance Dance Revolution is an entire series of video games, so when you get tired of one set of 30ish songs, there's approximately 15+ more games you could buy and play.  

Wii Fit

If you've ever thought having a personal trainer might do you good for keeping up with your exercise, the folks who made Wii Fit agree with you wholeheartedly, and set out to make you an electronic one.  There are actually a number of video games out there like Wii Fit, some less video gamey than others, but since this was the most popular one, I'm opting to explain it.  

Like Dance Dance Revolution, Wii Fit comes with a special controller. 
I always kind of thought it looked like a scale, which I hated for some reason...
 Unlike DDR, this game is not particularly competitive.  You stand on that controller, which acts like a computerized balance board.   The game features yoga, balancing minigames, and even aerobic exercises.  The game coaches you in how to do the exercises, how to improve at them, and how well you're doing at them as you play.  Because the controller tracks where your balance is, it's capable of telling if you're off balance, how you're moving, etc.  

Here's a video of a single minigame, with a side-by-side of the actual human playing it.

 

 You'll notice he doesn't actually jump off the board while he plays, which personally makes me prefer Dance Dance Revolution.  But I've historically been terrible at physical activities, especially balance-related ones.  

So What?

These three games, and knockoffs like them, are a few in the thousands of video games that have come out in the past decade.  However, I think they are the future of exercise for a number of reasons.  

First, inertia and lack of mobility is a factor.  Your average Joe or Jane might want to be more fit, but may not have easy access to a gym, hiking trail, or safe area to walk in.  After a long day at work, most people aren't interested in driving another 15-30 minutes to go to the gym, tire themselves out further, and then go home.  They would rather go home, and maybe exercise there, maybe just crash.  With an in-home exercise station, the option is available whenever.  

Second, if you don't already love exercise, or don't consider it fun (which is the state I'm in), trying to get into shape is an excruciatingly boring and painful enterprise.  I didn't love exercise growing up, and year after year of abysmal yearly school fitness test reports merely solidified my distaste for the subject.  I don't hate gyms, but since people drain my energy, I tend to prefer not going to one.  So a more solitary, yet safe alternative is needed.

Lastly, psychology.  Research is showing more and more that "game-ifying" your workout (and literally everything else) is very psychologically rewarding.  People love seeing progress, earning rewards (even simple ones like a message on the screen saying, "You achieved 45 jumping jacks in a row!") feeling like they've accomplished something, and even competing with others.  

If full virtual reality becomes viable, the market for this sort of thing could only improve.  After all, why pedal a stationary bike looking at the other gym-goers, when you could wear some fancy glasses and be seeing some high resolution beach scenery?   Instead of jogging on a track and seeing the same thing over and over, you could be looking at a virtual simulated hiking trail, complete with different trees, shrubs, bird sounds, and wildlife.  All the while, the game will track how long you've exercised, how hard you're exercising, how far you've gone, and congratulate you after you reach a set goal.

For someone like me, who is not inclined to fitness but does love video games?  It might be the ticket to less effortful, more rewarding fitness.  

Notable Mentions

Not included in this article specifically, but worth knowing about:  

Fitocracy, which is a personalized fitness coach on your phone, but requires you to go exercising yourself.  It tracks the exercises you do, letting you log your goals and activities, and also provides gameified quests and achievements to prod you into doing more, or doing similar exercises.  In addition, it works as a social networking site, kind of like Facebook, so you can compete (or commiserate) with your friends. 

Zombies, Run!, which puts you as the main character in a post-apocalyptic storyline, written by a published author.  The world ended, zombies are everywhere, and the survivors have banded together to form settlements safe from the zombie menace.  You are Runner 5, one of a very necessary group of individuals who retrieves supplies from the wilds so that the enclaves of survivors can continue to exist.  You go running (jogging, walking briskly), and the game paints the story around you.  And the zombies are only the beginning.  As you go, you learn about the world, the people of your community, and what happened to cause the zombie apocalypse.  The game was hugely successful, and is now into its 5th "season" of story.  This app was actually successful in motivating me to go jogging for a time, merely because I wanted to know what happened next. 

Wednesday, August 9, 2017

Reading the Research: Day-to-Day Activities are Harder for Women with Autism

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 describes the results of a series of tests measuring executive functioning across girls and boys with autism.

For those of you not familiar, executive functioning is basically a person's ability to prioritize, regulate, and monitor their behavior and actions.  Your ability to plan your day, step by step, is one use of executive functioning.  You use executive functioning to decide what thing on your to-do list is the most important, the second most important, etc.  Your ability to focus on a single task despite distractions and other tasks is also part of executive functioning.  Needless to say, executive functioning is important for leading a stable, independent life.

This study is somewhat unusual in specifically looking at both boys and girls on the autism spectrum.  Much noise has been made, and most research done mostly on boys, since there are statistically so many more boys with autism than girls.  The thing is, it's beginning to become clear that autism simply manifests different in girls than it does in boys.  So research like this is important. 

So, onto the actual results.  The study showed that while girls with autism displayed better social and communication skills, they tended to struggle more with day-to-day functioning.  This flies in the face of current assumptions, which have it that autistic girls are overall better at managing life and its pitfalls despite their autism and challenges.

This is interesting to me because A) it's valuable to have data on how autism affects the two basic sexes, and B) because it makes me wonder about my own difficulties in school.  I don't think I would have ever qualified for a diagnosis of executive dysfunction, but it wouldn't surprise me if found I that I have more difficulty with it than most people.

I talk myself through a schedule for the day.  For example, this morning, unlike most mornings, I needed to run out for errands.  I put together my plan out loud: the library to return books, then a grocery store (for ingredients), then the fabric store (for blackout curtain materials).  I rehearsed that three times, visualizing the driving route I'd have to take, to make sure I'd remember it, then realized I needed to add the post office to the list.  So then I had to rehearse it a couple more times, adding the post office into the list, before I actually left to do the errands.

It's not that I have trouble going places.  I have my car, which I am comfortable with, and I have GPS if I get lost.  It's that I wanted to make sure I did the errands in the optimal route, and that I didn't forget any of the stops.  It would annoy me a lot if I missed a stop and had to go back. Talking to myself, and rehearsing the steps of my trip, helps me remember and make sure not to miss any stops.

I'm not sure how much other people direct themselves in this manner, but I do know that talking to yourself is popularly considered a sign of mental illness.  That's a load of bullcrap, by the way.  While there are some mental illnesses that manifest that way, there are plenty of other self-talk conversations that, like mine, are simply methods to promote self-regulation and effectiveness.