Wednesday, October 18, 2017

Legwork and Life, week of 10/18/17


I appear to still be alive and functioning, so things must be going well.  Or reasonably well.  It would be nice if I wasn't having to air out the apartment from another mold infestation (home made bread left too long, this time).  It wasn't that bad the last time, because it was summer and nice out.  It is now fall and a mite chillier than I'm happy in.  I should be okay to shut the door and keep it shut in an hour or two, though.  I already feel less like I'm swallowing glass shards.

Birthdays seem to have gone okay so far.  I sent my sister-in-law a couple small things and called her, but was a derp and called too late in the day to actually get ahold of her.  I'll try to do better next year.  My mother's birthday was up after that, and while normally I'd do the same basic thing, buy a present and call, this year I was able to be a bit fancier.  My parents just moved into this area, which means they don't know all the restaurants, shops, and attractions.  So I took my mother to one of the larger farm markets in the area and bought her a good armload or two of farm-fresh groceries.  She has very exacting dietary requirements, so having all this fresh food, plus knowing where the place was, served as a pretty decent present.  Or she seemed happy, anyway. 

Other than a few friends having birthdays soon, that pretty much ends the birthday-o-rama for the year.  Normally I'd have a combination birthday party with another friend, sometime between his birthday and mine, but this year I'm going to be out of town pretty much up to my birthday.  So I guess that probably won't happen.  Chris is going to be a sweetheart and give me a nice relaxing experience (hot tub, massage, good food, etc) nearish the actual day, though, so I think we can safely say I'll be sufficiently pampered.

The trip I'm referring to, for being out of town, is starting off with the wedding I mentioned last week.  I'm really looking forward to it.  One of the grooms is possibly the most adorable human being I've ever met, so getting to see him married to someone he loves is basically amazing.  I mean, it's a fancy formal occasion so it'll tire me the heck out, but I may also be so gleeful about it that I'll break/rewire some brain circuits and be happier as a person from now on.  We can only hope! 

Monday, October 16, 2017

Reading the Research: Resilience

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

Today's article talks about resilience, which is the psychological term for the ability of some people to get knocked down by life, get back up, and be stronger than ever, even in really stressful situations.  Rather than letting failures upset them and gnaw away at their self-esteem, resilient people focus on learning from their mistakes and rising from the metaphorical ashes.  Some factors that play into resilience are optimism, a positive attitude, good emotional regulation, and the ability to see failure as a form of helpful feedback.

This is most obviously relevant in bullying situations.  Almost all kids get bullied in school, and autistic kids and other kids with special needs tend to be the favored targets because of our differences and deficits.  Often it can be hard to recognize bullying when we see it, for instance.  But even if we do recognize it, responding to it effectively is a whole different can of metaphorical worms.  And of course even once you finish school, you're not free of bullies.  They just got smarter and subtler as everyone got older.

So some people, when bullied, crumple after a while, and some people don't.  That's resilience.  This article focuses on another apparent benefit of resiliency: it protects you somewhat from bullies.  I guess the researchers theorize that the resilience serves as a buffer, insulating the person from the bully's influence somewhat, as well as making the person a less attractive target.  Ergo, bullied less often, and with less effect.

How does one get this magical trait?  Well, apparently the capacity for it is innate... but it has to be trained.  Adults can model effective strategies to deflect, dismiss, or rise above the insults and hate.  And I guess for autistic kids, maybe directly teaching them as well as modeling the correct actions would be appropriate.  Simply seeing the behavior probably wouldn't have been sufficient to teach grade-school me how to not get bullied every day...

And by that, you can tell that I was no exception from the horrifying statistics regarding special needs kids and bullying.  I like to say I got my victimization out of the way nice and early in life, starting in Kindergarten (age 5) or maybe 1st grade (age 6), and continuing through the end of 3rd grade (age 9).  It was at a small, private Christian school, for people who like irony.

I won't say the experience wrecked my life, because it didn't.  But it did profoundly change me, and not in a good way.  It propelled me into avoiding people, for the most part, because not only did some jackass boy in school tease me, literally no one defended me.  So at the tender age of 9, I resolved that no one would do that crap to me again, and set about trying to be Spock (with anger issues, and I'd never seen Star Trek to recognize the parallels at the time).

I didn't stop growing, but it took four more years to find an actual friend.  I found him online, in a cesspit section of the Internet, and fortunately he was kind enough to put up with my neuroses and scars and still like me most of the time.  Also, he taught me sarcasm, to the point that I am now fluent in it.  It took another few years to find friends in real life, and they literally had to shove me across the gymnasium floor to get me to sign up for a club in high school.  Like, bodily shove, like you see in TV shows, one on each side, pushing so I skidded on the backs of my shoes toward the club's table.

I did join the club, make some acquaintances, etc.  In college I made some actual friends after a bit, through clubs and events and such.  I don't think I'm great at it, but at least I think I can manage it, and I semi-maintain a social life of sorts.  Also, I courted and married my spouse and while we argue on things, we're making it work, too. 

Am I resilient?  I'm not really sure, having researched the proper definition for it.  I didn't crumple and get eaten alive by my anxiety and depression.  But the traits I listed above?  The positive attitude, optimism, emotional regulation, seeing failure as a learning opportunity, knowing methods to diffuse or brush off bullying, etc?  I... don't have that.  Any of it, I think.  I'm only developing reasonable emotional recognition and regulation now, and I'm almost 30.  I identified as a cynic rather than a pessimist for part of high school and college.  I am... now probably just a very light pessimist.  I don't see failure as the end of everything, but I certainly don't see it as a learning experience.  Failure happens.  It's life.  And I'm autistic, bullying comes in so many flavors it's hard to recognize let alone handle properly. 


So if I don't have those things, what exactly do I have?  Why am I still going and trying to do things?  Why did I get through elementary school, middle school, high school, and college?  As far as I can tell, the answer is that I am just too stubborn to stay down.  That seems to be the story of my life.  I'm not really good at things, I'm just too stubborn to quit until I get them figured out or the situation passes.


Is resiliency not fully defined yet?  Should I count, given the eventual relative success of my life?  I'm not sure.  But either way, this article highlights one more reason to recognize and try to train resilience into people we care about, and especially autistic and other special-needs people. 

Friday, October 13, 2017

Book Review: Level Up Your Social Life

Level Up Your Social Life: The Gamer's Guide to Social Success, by Daniel Wendler, is a charmingly succinct set of steps and concepts to improve your social life.  The author, an avid video game player (gamer) and well-spoken autistic, seeks to teach you his methods for getting more practiced in making and keeping friends, and extending the limits of your world and interests.

This book seems to be marketed at people like the author himself, that is, autistic people who like video games.  But in truth, this book could serve anyone well, as long as they're willing to put in the effort to try the various "quests."  While the book references many different video games, it also takes care to explain those references in enough detail that you can understand them without playing the actual games.  In fact, I was clued into this book's existence by a non-gamer relative of mine. 

As a gamer of the female sex, before it was acceptable to be a gamer girl, I mostly kept to myself and played single-player games in short stints.  This was in large part because of my parents, who insisted that video games rotted your brain.  I was 16 when I started sneaking handheld video games into the house, and it took that long because that was how long it took me to find out that video games were fun to play with friends.  Before that, I was stuck with limited gaming time using our computer, and mainly using my brother's video games at that.

As such, I'd only personally played a third of the games listed in the book, and of those, actually gotten to spend a lot of time with 2-3 of them.  Fortunately, as I mentioned above, the games and the concepts the author draws from them are well explained.  I don't think a non-gamer would need to play any of the games in the book to understand the ideas in each chapter.

Onto the actual book: the advice and suggested courses of action ("quests") seemed very sound to me.  In large part, the book didn't have a lot of new concepts or tricks to offer me specifically, but it did offer entirely new ways of thinking about those things, and making them make sense.  Some basic things in the "quests" include going new places, doing new things, making a point of practicing social interaction multiple times a day, and practicing reading body language. 

Basically, in less than 150 pages, the author gives you a workable plan (broken into bite size pieces) for going from reclusively hermitting to being actively social and engaged in the larger world.  He doesn't underestimate how difficult this can be, either, which I appreciated.

Read This Book If

You think your social skills could use some improvement, especially if you're autistic and love video games.  This book is full of good advice in reasonable, bite-sized portions, and I have no doubts that following its advice will result in improved social skills.  At less than 150 pages, it is quite readable and written in easy-to-understand language.  I highly recommend it. 

Wednesday, October 11, 2017

Legwork and Life, week of 10/11/17

I made it home safely, as you could probably tell from the Friday entry last week.  I have since been spending the time recovering, which, annoyingly, has not taken a couple days, but may end up taking a whole week.  A week to recover from a week and a half trip.  And, I suppose, the vast amounts of stress that build up prior to that week and a half.  Still annoying.

I think I might be doing better now that I've started a different computer game.  I like to be good at something on a regular basis, and since I am not good at life, socializing, music, or most other subjects, I often sink my metaphorical teeth into computer games.  This particular one is a text-based game, somewhat like Zork, but multiplayer and with a small, helpful community attached.  I actually played this particular game in college for a good while, and developed some player resources (specifically, a wiki) for it.  Then I graduated, became a ball of stress looking for a job, and then became a ball of stress with a job that kept me too busy to play.  Now I'm a bit less of a ball of stress, so perhaps I have time to play again.  Also, the playerbase and the staff of the game welcomed me back with open arms, so that was both gracious of them and gratifying to me. 

The challenge of updating the wiki (player resources) for the game is a daunting one, but I should be okay if I take it slowly.  It's not like the game has upended itself in six years, but some of the information I'd put down has changed, and some of it is now entirely inaccurate.  And also, when I made the resource, I did it rather crudely rather than making a real wiki, so that bugs me now and I'll have to fix it.

In other news, it's October, the month of all the birthdays forever in my immediate family.  We're two down, two to go, for that.  My mother's birthday is upcoming, as is my own.  I actually have several friends who were also born in October.  The finances are a bit stretched due to upcoming events, but a few small presents might be in order. 

Upcoming next week is a trip out to Connecticut (again), but for a more festive occasion: a wedding.  Two of our wedding guests are tying the knot this month, and they kindly invited us in return to their wedding.  It'll be lovely to see them again.  They're good people, but the distance (over 700 miles, 12+ hours by car) is kind of ruinous for most visits.  While we're out there, Chris has endeavored to visit family and friends.  The initial idea was for a mini-vacation, but the resulting schedule is so full of people, I can't realistically call it a vacation any more.  It will, however, be good to see people.  And unlike the last trip down to CT, I should be able to isolate myself a bit more during and after the day. So it'll probably be all right. 

Monday, October 9, 2017

Reading the Research: Visualizing Biological Sex

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 is about biological (individual) sex, and how it can be best visualized.  Because this subject touches all lives, and stuff like this can really complicate dealing with autism, especially as you appear more "normal" to strangers, I think this merits some publicity.

While common knowledge is that you are either male (genetically XY) or female (genetically XX), this is actually inaccurate.  I can't count how many stupid jokes I've heard on the subject when people don't understand trans people, or the third biological category, called intersex.  Turns out that third category has an astonishing amount of variety, some of which generally goes undetected because it's so subtle.  You yourself might have hormonal differences or slight genetic differences, entirely undetected because you've never questioned the category your physical parts put you in.

I found this article and its accompanying chart, published in Scientific American, fascinating.  I knew intersex was a category, but like most laypeople, I made the assumption that if the parts were all one thing, you must be that thing.  This, despite knowing full well that genetics are often subtle things, and that hormone imbalances don't necessarily have a lot of outward signs.  After all, my own hormones are clearly somewhat imbalanced, given my period schedule and this one, stupid hair that grows on the underside of my chin.  And all my parts seem to be "female."

But I'd guess, looking at this chart, that I probably qualify as slightly intersex, given those hormones and that stupid chin hair that wants to be a beard hair.  Without getting my genes tested for the specific abnormalities, and my hormone levels tested, I can't be sure, of course.  But if I found out today that I was technically intersex because of those characteristics, it wouldn't upset me. 

I'm already autistic and identify as transgender (gender neutral, i.e. please keep your gender assumptions away from me), which pretty much kicks me out of the "normal" category forever.  Adding intersex to the list wouldn't really affect my quality of life much, beyond making me automatically more sympathetic to any intersex person I find out I've come across.  (I say "find out" because it is not appropriate to ask about someone's sex parts, regardless of how they look or present themselves.)

I do think it's important to know and understand how wide the intersex category is, though, in light of the sheer amount of ignorance in society.  I've seen an actual pastor (at a church I was visiting) make the, "You don't know what gender the kid is?  Well, uh, did you check?" joke, pointing at his junk.  I found that kind of horrifying, even back when I only knew intersex people existed as a very small population, with a mix of sex parts.  I asked him how that policy would work with intersex people.  I'm not sure he took me seriously.  But I hope so. 

Friday, October 6, 2017

Dissociation: A Stranger to My Life

I've just gotten home from my week and a half trip out to Connecticut to help my parents move.  Now both in their 60s, they're politely and thoughtfully moving themselves into an independent living facility/retirement home.  The place is such that if they should become unable to maintain independent living, the management will provide helping staff for them.  If that becomes too little help, they may be moved into an assisted living unit, and eventually, if necessary, into an intensive care area.  Basically, they've made it so that I, their closest child, will not need to worry about their living accommodations and care, right up until they die.

To facilitate this, though, they had to embark on a major stuff-downsizing campaign.  So my mother spent almost the entire summer pruning the various things she'd collecting in her years of life.  Old art projects from my childhood, scads of paperwork, sheet music, odds and ends, etc.  This was difficult for her, because her natural impulse is to keep everything for the memories and nostalgia and the "in case we need this" impulse.  However, she's been working on reversing this tendency for at least a decade now, and she's gotten much better at letting things go.  By the time I showed up, there were less than 30 boxes left to go through, at least ten of which were partially or entirely mine.

So I spent a lot of time in the basement this trip, with my head full of half-remembered memories as I sifted through years of my life stored in battered cardboard boxes.  I threw out or donated most of what I found, but as I did, I must have absorbed some of my high school mindset.  The various notebooks I went through contained some of my high school dilemmas, rants, and miseries.  And of course I was staying in my old room, with its peculiar odor, in the old house, with all the same noises and quirks.  I soon even reached a familiar state of sleep deprivation, which plagued me through late high school.

In short, it's sort of like I was transported partially back to my high school years, sans that I knew I was autistic and that sudden sharp noises and anxious people hurt and wore on me.

So maybe it's not surprising that when I finally got home to my apartment, I only half-recognized the wood flooring.  And my computer's mouse and keyboard felt unfamiliar, despite that I do most of my work on it.  And most upsettingly to me, that I only half-recognized my spouse's face, even as I did recognize his voice and demeanor.

It's not that I hadn't seen him during the trip.  We'd used a video phone system to chat for a half hour or longer every evening I was gone.  I was pretty worn out every night, though, especially towards the end.  Maybe I wasn't looking as much as I could have been?  Either way, when I arrived back and was summarily confused by my lack of complete recognition, I don't think he noticed or cared.  He was happy to see me and helped me carry my luggage back, which was why I was able to contemplate the flooring in the foyer, and my keyboard and mouse later.

I guess what floors me about this whole experience is that it was only a week and a half.  I really wasn't gone long.  But now my normal life feels strange.  A book I read recently suggested that autistic brains are much more plastic (changeable) than neurotypical brains, so perhaps my brain was already shifting to accommodate the stressful circumstances I put it in?

I've had this kind of dissociation in small portions before, where I'd left off playing a computer game for almost a year.  When I came back to it, the game interface and mechanics were simultaneously familiar and unfamiliar.  But I don't think I've ever had the dissociation on such a grand scale.  My fingers are unerringly typing out this post on my computer's keyboard, and it no longer feels so unfamiliar now.  So the confusion will pass, I'm sure.

Hopefully soon.  I have adulting to do: bills to pay, car registration to finalize, passport to renew, blog to keep up with...  And soon, I'll need to incorporate my various personal items from my parents' house into this apartment, too.  I think the process may take longer than it would otherwise.  Normally I have more structure to my life than I do right now...  because of the extreme amounts of stress, I stopped playing my usual computer game (and won't be returning to it; it eats too much time) and quit one of my volunteer jobs.  I'm going to have to find some other things to do.  In the meantime, I guess things will feel strange for awhile.

Wednesday, October 4, 2017

Legwork and Life, week of 10/4/17

Gee, I'd thought this whole trip down to help my parents was going to be a break from the stresses of my life.  I was right and completely wrong, simultaneously.

Technically, the stresses I'm experiencing are not normal stresses for my life.  So in the most literal sense, I'm getting a break.  That said, the spirit of that phrase "break from the stresses of life" tends to mean "a break from stress" and that I most definitely am not getting.

I think I've actually been miserable pretty much since I arrived.  I've mostly not paid attention to it, since there's been lots of work to be done.  But in the moments when there isn't work, and more and more recently as I've run out of patience and energy faster, I am definitely miserable.

Maybe this shouldn't be surprising.  I'm away from my spouse and my apartment and my bed.  I haven't been sleeping well due to the change in beds.  The house my parents lived in has almost no insulation from noise, meaning I could hear people going up and down the stairs, doing dishes in the kitchen, going out to the garage, talking... and my dad gets up at 5am relatively often.

This meant I didn't sleep well... but it also meant that I was constantly subjected to noise abuse.  Anytime someone touched dishes or cupboards, I suffered.  And because they were moving and they eat three meals a day, that was often.  So I spent a lot of energy dealing with that, with the poor sleep giving me an ever-decreasing supply of energy.

This trip also lacked a decent place for me to be alone and isolated from other people.  Normally, at home, my apartment is reasonably sound-proofed.  Not perfect, but okay.  And when Chris is at work, I have the place to myself, which gives me plenty of time to recharge, focus, and get work done. Not so here.  There was work to do from sunup to sundown, and the only reasonably quiet, alone time I was able to get was around 1-2am, after both parents were asleep.  And I quickly stopped taking advantage of that, because my mother would be up by 8am or earlier.  So I was basically trading sleep for sanity.  I figured out pretty quick that it was a bad tradeoff.

I've sort of deteriorated over the last week.  I arrived a reasonably cheerful, smiling daughter with ambitions to help.  As the days passed, I sort of slowly lost the ability to smile and make eye contact.  Which was kind of distressing, but given how tired and emotionally worn I was, is also maybe not surprising.  I'm kind of down to "put one foot in front of the other and someday this will end" mode.  I've mostly stopped making eye contact, and retreated into being selectively mute (I don't talk unless I'm asked a question or need to say something important).  It's felt bad, though, because even without making eye contact and checking the facial expressions, I know I'm not doing the neurotypical act properly, and there are consequences to that.  Mostly slightly hurt feelings in people I'll never see again, thus far, though.

I've complained about this trip a lot, dear reader, but you should keep in mind that it's not really anyone's fault, except maybe mine for signing up for it.  Moving is a stressful process no matter who you are, and this particular move was fast-paced and stressful even for my parents.  Also, they had never been told how much their cupboards and dishes and such hurt me, and it had never been a problem for me to simply stay in my old room before.  Presumably I wasn't self-aware enough in high school to explain it to them.

Today finds me holed up in a hotel room for another half hour or so, after which the driving begins.  Every day prior to Monday was packing/sorting/etc.  Monday was when the movers came to pack up the furniture, boxes, etc.  I was basically useless that day.  The sound of tape ripping, all the time, every time, was so painful that I wore earplugs most of the day, and eventually left the house entirely.  Yesterday was spent cleaning the house now that all the stuff was gone.  I made myself somewhat useful there, as I had some experience with cleaning residences from a summer job.  We then drove about 4 hours to this hotel, where I spent the night.

Which leaves today, the last day of the trip, where we'll drive 10-12 hours to get my parents and their remaining stuff to Michigan.  My spouse will be waiting with a hug, some cuddles, and my own bed.  I'm looking forward to that.  Not the drive, so much, but definitely the stuff after the drive.  

Monday, October 2, 2017

Reading the Research: Treating Untreatable Depression

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

Today's study examines neurofeedback as a treatment option for depression.  Many people with autism develop depression (and anxiety), either from the strain of being a square peg stuffed into a round hole, or from various other factors. The traditional therapy for such depression is drugs, which aren't ideal for various reasons, not the least of which being that autistic people can have very sensitive systems.  The dosage of antidepressants can be very finicky, and we don't always respond in any kind of predictable fashion to them.  In addition, up to a third of all people with depression (numbering over 300 million worldwide) aren't helped by the many and varied forms of antidepressants on the market.  This necessitates other forms of treatment, which are limited to say the least.

In the US, this line of research has been all but ignored.  Pharmaceutical companies need steady revenue to research new drugs and improve old ones, and they are the ones with most of the money to throw at studies like this one.  Neurofeedback is a non-drug intervention, and one that can eventually render itself unnecessary, so effective are the results.  That's bad for business, for pharmaceutical companies, and as such not much research has come out for this therapy.  So, unsurprisingly at least to me, this study comes from elsewhere in the world: South Korea.

This was a very very small study, with less than 25 participants, so the results should of course be taken with a grain of salt and preferably replicated as soon as possible on a large scale.  But the results were very promising.  Fully 2/3rds of the experimental subjects (8 of 12), the ones that received the neurofeedback therapy, showed results, and five of them showed results so strongly that their depression was categorized as "in remission."  Basically, they were recovering so well that they stopped qualifying as "depressed."  The control group, the ones not given neurofeedback therapy, showed no changes at all.

Regular readers of this blog will probably be able to guess why I'm highlighting this study to you.  I myself have improved markedly because of neurofeedback over the course of two and a half years.  The type of neurofeedback involved in this study was an active form, where the participant focuses on changing the levels of particular brainwaves as displayed on a computer screen in front of them.  The type I benefit from is passive, and is called LENS.

I highly recommend it.  While it did take awhile to have noticeable results for me, the results are definitely in at this point.  I am much less anxious, much less depressed, and much more able to smile and interact with people on a day-to-day basis, in a socially acceptable manner, than I was two years ago.  My ability to be a social chameleon has skyrocketed.  My mood climate (my mood overall, rather than day-to-day) has risen to "neutral, maybe slightly positive" instead of "grumpy all day every day."  I am much less somber than I used to be, and much more able to toss out jokes.

In short, my quality of living has risen markedly because of this therapy.  It does me good to see it getting some publicity.  As far as I'm concerned, it needs a lot more.  The scientists involved in this study were apparently surprised at how good their results were, which makes me wonder what their expectations looked like... but regardless, hopefully South Korea and other countries can help lead the way to safer, more long-lasting therapies for depression, anxiety, executive function disorders, and dysregulation in general. 

Friday, September 29, 2017

Article: Autism in the ER

A friend of mine linked me to a recently published guide for hospitals and medical service personnel.  It describes a number of common pitfalls in established medical practices when they are applied to people with autism.

I have not, in my life, had much occasion to visit the hospital, especially not in regards to my own health.  I've never broken a bone despite my inherent clumsiness.  But even with my habit of not doing many dangerous things, I suspect that pattern can't hold forever.  So I'm glad to see things like this, written by an autistic self-advocate, plainly and clearly, with a series of workable tips and modifications to expectations.

While some of these tips are specific to the emergency room and medical situations, others are just common sense when it comes to dealing with autistic people.  For example: "Don't expect eye contact," "speak directly to the autistic person even if they have a family member or helper with them," and "don't discourage stimming unless it's physically hurting someone."

Others are just good tips in a crisis anyway.  "Exude calmness" tends to be a wise idea around neurotypical people because panic can spread.  But around autistic people, who can be even more sensitive, especially if they're already upset, it's essential.  "Speak slowly, in clear sentences," also seems to me to be basic common sense in an emergency.  Which isn't to say it'd be easy, just that it would definitely be something to train into your emergency staff, if it isn't already.  The same goes for "Explain exactly what you're doing before you do it."  When I'm at the dentist's office or the doctor's office, I tend to ask a lot of questions, both as a way to find out what's happening and because it's interesting to me to dip my toes into different parts of human knowledge.  And honestly, with some prompting, a lot of people will talk about their specialties and their interests for quite a while.

Many of the remaining tips on the list are specific to autism, though, and I hope you'll read the article for those.  The introduction quite rightly points out that even highly verbal, well-blended autistic people may lose their ability to communicate in times of extreme distress.  So even if you, or your child, or whoever, communicates well, these are still good tips to keep on hand.  Please pass on this article to any emergency services personnel you know.  I guarantee that taking these tips to heart will result in a much more pleasant, efficient hospital stay. 

Wednesday, September 27, 2017

Legwork and Life, week of 9/27/17

I survived the community conversation for the advocacy group I'm part of.  I did not, however, survive it as a board member.  I called it quits on being a board member and committee chair yesterday, and I did so very politely and somehow without hinting about how much damage the group dynamics have done to me.  Yay...

I do really think advocacy is incredibly important, and I intend to continue advocating, but my stress levels demonstrate I was trying too hard and trying to do too much.  The group will keep me as a member, and I'll keep two of my easier responsibilities (keeping a website up, but not updating it, and managing a Google Calendar), but the other responsibilities will fall on other people, or not, as the group chooses.

Anyway, I ran the community conversation.  It was poorly advertised, and thus attendance was low, but it was a kindness to me that the people who did come were all familiar to me.  Two came from the adult autistic group I try to attend once a month or more, and two of my friends sympathetic to the subject came as well.  It was sweet of them all to show up.  I don't know whether they got much out of it, but I did try to deliver something worth seeing.

I'd thrown together a presentation on advocacy, which I've passed along to the advocacy group in case they'd like to use it.  It took me a long time to make, but I think it turned out all right.  Turns out there are several apps you can use to make it easier to talk to your legislators and tell them how you feel about subjects.  There are also a few websites that let you track bills in the Michigan Congress, and a couple on the national level that focus specifically on disability issues.  In addition, there's a state-created guide to talking to your legislators, including tips for writing and visiting.  If there's interest, I can summarize my presentation for a Friday post.

In unrelated news, I'm typing this on Tuesday at 6pm in an airport, because I'm going to be exhausted tomorrow morning.  I'm going to be traveling to Connecticut, to help my parents finish preparing to move to Michigan.  Even with my noise canceling earphones in, this place is pretty loud.  To make things even odder for me, I'm typing this on my tablet, using a bluetooth keyboard my spouse got me.  My screen is on my lap, and so is my keyboard.  It's an odd experience for someone used to writing on a computer.

I'd best get used to it, though.  I've finally re-developed a buffer (set of backdated posts) for my blog (yayyyyy), but the thing about buffers is that they go away if you don't maintain them.  So that will give me something to do, if for some reason sorting through my old belongings at my parents' house isn't busying enough.  I'm sure my mother will want to go hiking or do some form of exercise, too.

I actually had a hard time deciding what to bring with me on the trip, other than clothes.  So much of my life lives on this tablet.  Right now, for example, Chris and I are watching through the Stargate TV shows through an online subscription.  That's on my tablet.  I have a couple time-wastey phone games that I play... also on my tablet.  I have my blog, my music, my news... tablet, tablet, tablet.

As a last ditch "just in case the tablet dies" measure, I brought my 3DS, which is a handheld gaming system.  I'm not super excited or into any of the games I brought, but I'm kind of afraid my tablet's battery will die eventually, despite the two chargers, power strip, and two backup battery packs I brought.  (Why no, I don't feel particularly paranoid today, why do you ask...?)

Monday, September 25, 2017

Reading the Research: Predictive Text for Autistic Children

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

Today's article discusses a prototype piece of assistive technology that may help autistic individuals learn how to make better conversation.

Remember the Google Glass hubbub a few years back?  Google developed and tested, essentially, a wearable computer built into a pair of glasses.  There was a huge backlash of mostly negative feedback, including privacy concerns and safety concerns.  After all, if you're driving and the glasses put something in the middle of your field of vision, how are you supposed to see the cars in front of you?  And of course, nobody in Witness Protection wants someone near them taking pictures all willy-nilly.  Same with a lot of plain folks, even some with nothing in particular to hide. 

Apparently despite the eventual death of the project for public sale, "wearable assistive technology" isn't out of the picture entirely.  There are a number of similar products listed in Wikipedia under the name "Smartglasses."

This particular study merely names Google Glass an one of the types of "wearable technology" that their prototype could be used with.  They tested an app called "Holli" with 15 autistic children, asking them to be guided by the app while interacting socially.  Holli was made to listen to a conversation, then provide possible appropriate responses for the user to give to move the conversation along.  When the user gives a response, the provided responses disappear until the next exchange happens in the conversation.

Their simple example in the article was that, when the user was greeted with "Welcome," the app provides responses like "Hey," "Hello," and "Afternoon."  The study went very well according to the article, with the app managing to complete most conversations without error, and the children having no real trouble following the promptings from the app.  Basically, a successful trial run.

The researchers suggested further progress might be made in customizing the text size and location, and the app's speech recognition ability.  Not everyone with autism can see with 20-20 vision, and of course some people don't enunciate well.  But they seem optimistic about the matter.

While I recognize the importance of being able to carry on a conversation, and suspect such a device might have been helpful while I was growing up, I think they're missing the obvious possibility: body language.  Assuming we can get past the privacy issues with cameras on glasses, of course.

Body language, you see, is unfortunately rather important to carrying out a conversation successfully.  If a person is smiling, you want to know what kind of smile it is (mean, polite, friendly, happy), so you can adjust accordingly.  Mean smiles mean you might be in trouble or someone might be making fun of you.  Polite ones mean the person is being businesslike and you should handle your business efficiently and then leave them alone.  Friendly ones mean you can consider making conversation a bit, but watch carefully for shifts in expression because not everyone wants to spend two minutes hearing about your day or your fascination with a video game.  Happy smiles are awfully situational to me, and I tend to try to figure out whether they're happy about something unrelated to me, or if I've done something that made them happy.

That's one kind of facial expression.  There's a ton of expressions that would be good to put into something like this: anger, fear, sadness, shock, tiredness, disgust, embarrassment, and thoughtfulness all come to mind as relatively different-looking expressions that could be programmed in.

Then there's gross body language.  Like posture.  People slouch or hunch, but they do so for multiple reasons.  Some people hunch defensively.  That can signal low self-esteem or being overwhelmed.  I hunched when I stood, walked, and sat for most of my life.  It wasn't on purpose.  It was just what was natural to me, possibly because I was always depressed, always felt alone, and always felt defensive and overwhelmed.  People also sometimes slouch if they're relaxed.  They feel more comfortable like that than sitting bolt upright, or at least sitting straight.  Finally, people can slouch in a threatening manner, a sort of "you don't scare me" relaxed-but-ready posture.

Does this seem complicated to you when I explain it?  Yet most people take knowing all this for granted.  Simply having the socially correct words displayed in front of you doesn't seem like enough to me.  Helpful, maybe, in basic social situations.  But you could do so much more. 

Friday, September 22, 2017

Stream of Consciousness: Stress and Dependability

Introduction

I'm running pretty ragged lately.  I have a lot on my plate.  Some of it's new stuff, stuff I haven't had to do exactly like this before.  That's hard.  But it's doable.  It's not what's running me ragged.  I'm fairly flexible for being autistic, and I've walked on the razor's edge of "way too much to do in way too little time" before.  I didn't break then, I probably won't now.

But this situation is different than anything I've had to deal with before, in one very major way: a lot of the involved forces, actors, etc, are partly-to-completely unreliable.  And that is messing with me, big time.

The last time I was pushed to a bleeding edge like this, I was in college.  Freshman year, second semester.  I had a ton of projects due in finals season, and of course the finals themselves.  I'd been thrown out of a group project for being autistic, more or less, and suddenly had to do the whole project by myself.  My boyfriend at the time assumed I would crumble under the pressure at some point, and he would have to clean up afterwards.  I still kind of resent that assumption.  But I get to resent that assumption because I made it work.  The deadlines were set in stone.  The projects had nice, clear descriptions.  The finals had dates and study materials.  All I had to do was be the superwoman of time management and prioritization, and survive until the end of the semester.  I did that.  It wasn't pretty.  I had some crying fits in between studying.  I was religious about my planner and my whiteboard of projects.  I may not have eaten terribly well.  But I did it.

Turns out real life involves a lot more cooperation with other people.  In college, it was mainly me I had to rely on.  Group projects were a thing, of course, but there weren't that many of them that semester, sans the one I got thrown out of.  I think I prefer college.

I am presently trying not to fall to pieces, in part because I'm not meeting my own standards for this blog and its posts.  In part because I don't seem to have enough time to spend on creating an interesting fantasy world for my friends to enjoy.  But really, other than detracting from my self-image and self-esteem, those are manageable.  What's really got my goat is the self-advocacy group I joined over a year ago.

People Aren't Dependable

I've heard it said that working with people is rather like herding cats.  Maybe that's true of people in general, but it's not true of my parents.  When they say they're going to do something, they do it.  They think carefully before accepting a position, or signing up for an event.  They're on time to appointments.  So that is what I consider normal.  I found, growing up, that I was happiest that way: being dependable, and people being dependable in turn.  Since people often give what they get, it worked out fairly well, for a while.

That dependability is important.  I make assumptions and plan my life around my calendar.  If I've been invited to a party, and I find out two hours before that the party is canceled, or worse, its location has been moved to a location an hour away, I'm going to get upset.  My careful planning and preparations for going to said party have been wasted, and I suddenly have to re-plan and re-prioritize what I'm doing with that time.  

Suddenly, I have to plan on twice as much traffic and more gas to get from where I was before plans changed.  Suddenly, I have to live through my nerves shredding as I apologize to a friend for having to leave early from our social time.  Or suddenly, I have to plan on being half an hour late and suffering that anxiety because I can't possibly make my schedule work.  The sudden shifts upset me, and I flail and panic until I can get my calendar re-organized to work with the new plan.

If I can't reorganize, it shreds me up emotionally and mentally.  I waste of a lot time and energy spinning my wheels and trying to make the situation work. 

I know, of course, that life happens.  Car trouble happens, for example.  You can yell and scream all you like at a flat tire, it's not going to re-inflate or replace itself with a new tire.  Same with someone getting really sick.  But there's a difference between that and plain forgetfulness.  

Forgetfulness, you see, is preventable.  If you have a smartphone or a computer or even a paper planner, you have no excuse for being forgetful.  Simply write down the event, and refer to your planner.  Heck, you can even set your smartphone to remind you, repeatedly, that an event is going to happen.  My particular calendar will remind me the day of, an hour before, a half hour before, 15 minutes before, and even 5 minutes before if I care that much.  I have a hard time forgiving habitual forgetfulness, because of how easy it is to counter.

I am dealing with a lot of habitually forgetful, disorganized people at this group.  I'm leading a committee for the board of directors, in a second committee, and trying to work with a third group that's just me and another person to host an event. I have tried to make all the meetings for these groups, tried to keep in contact with the people involved, to set dates that work with their schedules, etc.  

And I'm getting back... indifference.  Silence.  Excuses.  People are abandoning my committee.  As far as I can tell... because I'm requiring them to do a half hour's worth of work, once a week.  I ask if there's anything I can do to make it easier on them.  What the best way to contact them is.  I get nothing.  Or I get worse than nothing: unreliable info. 

I am literally going to be running a two hour meeting for self-advocates in just over a week, and I have no idea if the other person is even going to be there.  In the meantime, I'm supposed to be advertising (I hate advertising) and arranging for food for an unknown number of people (I've gotten no RSVPs). And now the support staff have also told me that apparently I need to have a presentation ready on a relevant subject, to share with the group.  I think I glared bloody murder at the email that informed me of this fact, for about ten minutes.  It beats crying, screaming, and smashing things into my desk.

My doctor tells me that I look "puffy," which she tells me means my system is inflamed from all the stress.  All my cells have puffed up a bit.  I have kind of noticed I've put on weight, or thought I'd put on weight.  My baggy shorts aren't so baggy despite my 3 day a week exercise program.  I have no idea if this happened to me before, but I think I've seen something similar in one of my family members when he was having a really rough time in life. 

Handling It

High stress situations are kind of the story of my life.  Sudden noises startle me, triggering stress reactions.  Babies crying, or children shrieking outside, fray my nerves.  Social interactions, especially unexpected ones, throw my analytical brain into high gear.  Situations where people are relying on me stress me out, too, because I'm afraid I'll fail them, disappoint them, and disappoint myself.  Life itself is unpredictable. 

What I'm saying is that I have a pretty high stress maximum.  So I'd actually be kind of curious to see what would happen if I had a blood test for stress hormones or whatever, right now.  Likely, the results wouldn't be pretty.  

I go into avoidance mode when the stress goes over a certain threshold.  So I've been reading a lot of a favorite book series.  To the point, unfortunately, where I haven't been reading books I should be for the blog, or doing things like writing blog entries or planning the next parts of my life.  

I've been doing all that pleasure reading because I literally can't focus anyway.  And at least sometimes, the book series makes me smile.  And it always has a happy-ish ending, for each book.  Real life isn't that polite.  Sometimes the hero fails.  Sometimes, cartoonishly evil and egotistical people sit in power, shoved around by more subtle, competent evil people.  And they use that power to oppress and destroy the weak and powerless, all for a smidgen more power in their vast array of power.  

At times like that, you find out that life doesn't end.  It keeps marching right on, heedless of your anguish and pain.  And the due dates keep coming, and they also don't care about your anguish and pain. 

So I have my books.  I have a little indoor fountain thing that lights up red and blue and makes semi-soothing water sounds.  I have sugar-laden snacks and calorie-intensive foods that taste good and make me feel better in the short term. And I have what little routine I can manage.  

But mostly, I have the vast amounts of unreasoning stubbornness that both my parents gifted me with.  It's why I got through that semester in college.  Maybe it'll be enough to get me through this. 

Wednesday, September 20, 2017

Legwork and Life, week of 9/20/17

I'm definitely keeping this update schedule.  It feels much more balanced and less rushed.  I'm still struggling at the Friday entries, but I feel like I have more time to handle them now.  I assume this is all in my head, but it's my head, I have to work with it.

Because I don't have enough going on already (sarcasm), Bible study has started up at church.  I'm going to attend, as I have the last three or so years.  It's a Thursday morning affair, which unfortunately means it's basically retirees and the odd person that doesn't work a normal 9-5 schedule.  Naturally, I'm the latter category, and depressingly, I'm the youngest person that attends.  That does give me lots of interesting things to say to the group, especially since I've disclosed my diagnosis to my small group. 

This year's study is going to be on Psalms.  I haven't dealt a lot with Psalms, as it all started sounding the same to me when I read them all at once.  Some of the individual turns of phrase were interesting, but those have been replicated in a dozen or three hymns or other songs.  So I'm not overly enthusiastic about this particular study.  I guess we'll see what happens.  I do think it's important to study the Bible and spend time learning about the context and proper meaning of the various books and words.  Otherwise you get people justifying slavery using the Bible, and justifying oppression of minorities, and paying lip service to loving your neighbor while taking away their healthcare, rights, and happiness. 

I'm a little disillusioned with the Christian Right.  Can you tell?

In less crabbity news, my mother uncovered a little decorative fountain that my brother gave me years ago.  She asked if I wanted it, and I opted to take it, so I've been experimenting with having it on.  The sound is relaxing, somewhat.  I also dug out an old addon I had on my computer called Elmnts, which basically plays the sounds of rain, ocean, a river, crackling fire, birdsong in a forest, and/or a busy coffee shop.  You can mix and match which sounds you want, and I'm particularly fond of the rainfall one.  It comes with distant thunder.  I'm not sure why that's so soothing to me.  My inclination is that my brain recognizes it as "rain means less activity, thunder means bad weather elsewhere, we should be still and quiet because nothing is going to happen." 

But really, I'm grasping at straws.  I was trying out the rainfall sounds in conjunction with the river sounds a couple days ago...sitting at my computer, next to a sliding door, with stark, brilliant sunshine streaming in.  Somehow, that didn't mess up the calming effect.  So I have no idea.  But hey, something that soothes my frayed nerves, at a time I really need my frayed nerves soothed?  Awesome. 

I just need to find something like that for my tablet/phone device (Elmnts no longer exists on the Internet, apparently), and then perhaps I can relax a bit on command.  The concept would be utterly absurd and impossible without this re-discovery, so wish me luck with that. 

Monday, September 18, 2017

Reading the Research: Recognizing Faces

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 an advancement in how we understand facial recognition in people.  According to the article, it's been assumed that the ability to recognize a familiar face was innate.  Kids were born with it, and by association, autistic kids and people who have major issues with it just... weren't.

Apparently, at least one scientist didn't think so.  So they tested that theory.  Since it's highly unethical to do most kinds of human testing, especially if babies are involved, they went to the next best thing: monkeys.  They raised two groups of monkeys, one group normally (the control group) and the other... well, abnormally (experiment group).  Basically, they raised the second group of monkeys with only human handlers, and the human handlers wore welding masks the entire time.  So, "faceless" parents.  Nurturing parents, but that group of monkeys never saw a face until they had grown up quite a bit.

Then the brains of the monkeys were scanned using an fMRI.  The part of the brain on the "experiment" monkeys that normally deals with facial recognition wasn't developed.  And they didn't intuitively look at the faces of people and monkeys, when tested.  They preferred to look at the hands of those pictures, and the corresponding recognition section of their brains was "overdeveloped."  In short, the experimental monkeys had learned to differentiate individuals using hands instead of faces.

The researchers concluded this finding could be important for autism and developmental prosopagnosia (the complete inability to recognize faces, including one's own face).  For autism, the researchers theorized that some of the social difficulties involved with autism might stem from lack of practice looking at faces, rather than necessarily some kind of innate disability.

I'm not going to disagree outright, because it's certainly going to make it more difficult to understand the nuances of a conversation if you're missing a basic component of that conversation.  But of course it's not as simple as rounding autistic kids up and making them look at faces in conversations as a rule.  There's a reason we sometimes avoid eye contact or looking at faces.

In my particular case?  It hurts.  I tend to avoid eye contact with random goers at the grocery store or the library.  Not all the time, because people tend to think that's rude.  But a lot of the time.  I've explained why before, but essentially... it's like getting hit upside the head with a baseball bat.  I don't know many people who would purposely sign up for getting hit in the head repeatedly, so perhaps it's no real surprise that I'm not overly interested in making casual eye contact.

So, if you mix that pain into the equation, you get a person that, as a rule, doesn't look at faces nearly as much as they could.  If learning to recognize faces is a skill that requires lots of practice, I am very far behind in my practicing... which is perhaps why I am kind of abysmal at recognizing faces and putting names to them.  Well, that and my shoddy visual processing.  But that's probably an entirely different can of worms. 

Friday, September 15, 2017

Book Review: Been There, Done That, Try This!

Been There. Done That.  Try This!: An Aspie's Guide to Life on Earth, edited by Tony Attwood, Craig Evans, and Anita Lesko, is a 300ish page book of advice from autistic mentors on how to deal with the toughest challenges we face in life.  I was initially very turned off by this book's cover, I suppose because I confused "editors" for "authors."  It seemed like the people listed as editors weren't autistic, and so were making the assumption that their neurotypical lives were sufficiently similar to mine that they could offer advice.  Much as I respect Dr. Attwood, that assumption was a bit much to stomach.

I was quite incorrect in my initial reaction.  The book is in fact mainly comprised of short essays from people on the spectrum.  These are organized by topic, and the topics were chosen by asking autistic people which issues cause the most stress to them.  The end result is that these topics are generally the most relevant to the widest population.  In fact, in my personal case, there were only two of the seventeen chapters that weren't relevant to my immediate life and needs.  Included in this book are suggestions on managing anxiety, self-image, sensory issues, bullying, career and job advice, depression, and personal organization.

Each chapter begins with a short introduction to the topic, like "Making and Keeping Friends," and then proceeds right into the essays by the contributing autistic authors.  Most of these are between a half page and three pages long, so not intensely involved reading.  At least four essays appear per topic, sometimes quite a few more than that.  After the essays finish, editor Tony Attwood has a say on the subject, based on his extensive experience with autistic people. 

The back of the book lists the "Aspie mentors," or the sources of the various essays that begin each chapter.  I was pleased to see that most of them hail from what I call "The Lost Generation," or the generation prior to the introduction of Asperger's Syndrome and the idea that being autistic didn't mean you had to be intellectually disabled.  I call it "The Lost Generation" because many of the autistic people that lived and died in those years never knew they were autistic, and in a lot of cases, got shunted into institutions with incorrect diagnoses such as schizophrenia.  I hate being near old mental institutions for that reason.  It's almost like I can hear the anguished screams and the misery.  All of which would have been preventable with a little more knowledge and a large dose of human empathy. 

The very youngest contributor of this book is only two years older than I am, but a number of the authors were born in the '40s and '50s.  Many of the authors talk about only getting their diagnosis in their 50s and 40s.  Also of note, these authors aren't all from the US.  There is a smattering of authors from Australia, the UK, and even one from Pakistan.  The editors kept the "British-isms" and other non-US grammar styles in the book, so I kept noticing words like "learnt" instead of "learned," and other minor differences.  I had no trouble understanding what the authors were getting at, though.

Finally, I can safely say that much, if not all, of this book is useful, relevant, and helpful.  Between the efforts to make the topics of discussion as widely relevant as possible, and the care put into choosing the essays, I think this is a fine book, and quite useful.  I am seriously considering putting it on my wishlist for my birthday and Christmas, which would be a first for any of my book reviews.

Read This Book If

You're autistic and want some good advice, on important subjects, from people who are like you and know what they're talking about.  A parent or professional could also get an idea of how we think and what tactics actually work for us by giving this book a read, but it is very much geared toward aiding autistic people in their lives.  If autistic book clubs exist, or an autistic social group is looking for a book to read together, I highly recommend this book for your reading list.  Tackling a chapter or two per week would likely provide invaluable discussions about some of the most challenging and important subjects in an autistic life. 

Wednesday, September 13, 2017

Legwork and Life, week of 9/12/17

So far I'm liking this new update schedule.  It feels more relaxed for the same amount of work, and makes my Monday less of a panic-fest.  Friday will be just the same, of course.

I'm sufficiently annoyed with the whole Self Advocates of Michigan thing to skip explaining how the meetings at the start of the month went.  Suffice it to say the work is unrewarding and stressful thus far.  We'll see if the meeting at the end of the month, where I have to stand up and talk to a bunch of other self-advocates and interested parties, is anything besides torture. 

Before that, though, my dad is going to be in town very briefly, so I'll get to have dinner with him and my grandmother.  I'm looking forward to it, as I don't see him that often and missed my last opportunity to visit with him.  Chris is probably looking forward to it also, because the dinner falls on one of his days to cook, and that means he can skip cooking that day.  I made some efforts to try to nail down what restaurant we'll go to, but didn't get much response.  Such is life.

This isn't the last time I'll see my dad this month, too.  At the end of the month, just after I exhaust myself trying to run an in-person meeting with a bunch of people I've never met before, I get to hop an airplane and fly down to CT.  My parents are finally on the tail end of moving, and I have a decent amount of stuff still left in my closet and in the basement.  Naturally, anything I can toss out is one less thing they have to move.  I'll also lend them a hand in the moving process as best I can.  It's little enough that I can do, but it's better than nothing.

I just hope I'm not a grumpy snarl-bucket when I get there.  I have yet to restore my blog's buffer, and I need to do that before I head off on this particular adventure.  While the airplane trip will give me plenty of time to read a book or a half-dozen science articles, it will also try my patience and my sanity, which will likely make it difficult to write any reviews.  And that's assuming I have any hardware that can manage a keyboard.  I haven't had a laptop for years, and Chris' old laptop has broken hinges.  That damage makes it very unpleasant to try to carry around, as it can't be closed properly or opened with anything but the most painstaking care.  I might make do with a bluetooth keyboard Chris got me years ago, if I can get it to link up to my tablet.  That would be awkward, as it doesn't actually attach to the tablet.  It's hard to look at the screen and line up the keyboard at the same time. 

In happier news, I have another haircut coming this week. I haven't, as a rule, looked forward to haircuts in the course of my life.  But I guess maybe it's a different story when the haircuts come with a hand massage and a scalp massage.  And the hairdresser person is a reasonably cool person that doesn't make excessive small talk.  I don't really love having to drive downtown for each of these visits, but it tends to be worth the time.  This visit is just a haircut, too, so I should be able to get the scalp treatment I had a couple trips ago.  The one that made my head and hair less dusty for a few days.  It was nice while it lasted, so I'm looking forward to it again. 

Monday, September 11, 2017

Reading the Research: Why Do Some Autistic People Hate Hugs?

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 deals with a phenomenon in autism I've mostly only seen in Temple Grandin's movie: the innate dislike of being touched.  If you watch the movie, she shrugs off hugs or outright rejects them.  This is not because she hates people, it's because those hugs are downright painful to her.  It's actually a major point in the movie when she's able to "lean into" a hug from her mother, rather than jerking away. 

I haven't personally experienced hugs as unpleasant, unless they're unpleasant for more standard reasons (like the person being dripping wet, or not being comfortable being close to that particular person).  But it's a common story, with autistic kids rejecting hugs or other forms of social touch (handshakes, light touches on the shoulder or arms, etc).  This naturally causes conflict all around, with the neurotypical people feeling hurt that their affection and connection-gestures have been rejected, and the autistic person on the defensive because of the sensory overload. 

So the question is always "why?"  Why can't autistic people enjoy hugs? 

At least according to this study, it's because we literally experience anxiety, like that of a phobia, at the prospect of hugs.  The study had people watching pictures while their brain waves were analyzed.  The autistic participants responded with anxiety to pictures of social touches, like hugs and handshakes, but not to pictures of non-touch-related social interactions.  The researchers noted a positive trend between the severity of the autism and the strength of the reaction (ie: the "more autistic" the more intense the negative reaction). 


The way this article is worded, it kind of feels like the authors think the anxiety-reaction is the reason we don't do well with social situations, or at least with hugs.  Which is backwards, if you ask me.  Say that tomorrow, you attend a family get-together.  The first ten hugs you receive feel like you're being crushed and simultaneously rubbed vigorously with sandpaper.  After that tenth hug, aren't you going to be hesitant about going for an 11th hug?  And if this continued, wouldn't you get anxious about any future hugs?  I would. 

So it seems to me like the researchers are mixing up cause and effect.  The comparison of the neural reactions to phobias is interesting, and one of the researchers suggested that the anxiety-reaction could be treated in perhaps the same way that phobias are treated.  I'm uncertain as to whether that would work, since generally a phobia is specifically a mind thing, rather than a mind thing with a repeated sensory component.  Desensitization therapy works for phobias because phobias don't reinforce themselves via your senses.  If you experience hugs as crushing and sandpaper, you're not going to be able to train yourself out of being anxious about crushing and sandpaper. 

I also somewhat doubt it's as simple as "more autism, more anxiety about social touch."  Autism is a spectrum, with a lot of different components and facets.  Having severe sensory issues with touch does not necessarily mean you have severe motor skills deficits, or severe executive functioning issues. 

Friday, September 8, 2017

Book Review: The Essential Guide to Asperger's Syndrome

The Essential Guide to Asperger's Syndrome: A parent's complete source of information and advice on raising a child with Aspeger's, by Eileen Bailey and Robert W. Montgomery, PhD, is one of those "complete guide" book ideas that are relatively common on my library's book shelves.  They're meant to be one-stop shopping for parents, especially parents that are new to the world of autism.  I have, at this point, probably read at least ten books written in this fashion. 

This one is better than most.  It's also a little more focused than most.  Specifically, it focuses on Asperger's Syndrome, or high-functioning autism.  The authors were aware this classification was going the way of the dinosaur with the current edition of the DSM, but released this book anyway in case it would help people.  I think it well might.

The first thing that set this book apart from other "complete guide" books for me was that it took the time to have a section for autistic women.  It has, in the past, been assumed that autism is mainly a masculine disability, because the diagnostic rate is so much higher for boys than it is for girls.  There's even a researcher out there that postulates that autism is a disorder that involves a "hyper male mind," which is to say that all autistic people are more masculine and have more stereotypically "male" traits than the average person.

I, personally, do not find that line of research terribly accurate or helpful.  Neither does this book, because it takes more than ten pages to explain how autism can look different in girls as they grow up.  It also explains how symptoms can take longer to show up in girls with autism, sometimes only becoming obvious in preteen and teenage years.

Another section that set this book apart from most "complete guide" books I've read is that it included a section on social skills, and how to teach them.  I found the section a little short and bare bones, but it seemed accurate enough for a start.  And it did catch most of the major pitfalls: taking turns in conversations, personal space, the problem with telling the absolute truth, avoiding being the "rules enforcer," personal hygiene, etc.  I would've liked to see a section on making small talk, as that was a major stumbling block for me, but perhaps the authors assumed the parents already knew how to handle that.

I was pleased, also, to see a section on bullying included.  Bullying is a huge problem when it comes to autistic people.  While most people experience a little bit of nastiness in middle school, autistic people are much more prone to being a favorite target, or even getting hit with it much younger, like me.  I was a favorite bullying target starting in either Kindergarten or 1st grade, I can't remember which, and that continued until my family moved away after 3rd grade.  I was easy to wind up, and predictable.  Also, no one would come to my defense.  And this all happened before cyber-bullying took the stage.  Today's kids have even more ways to be psychologically abused.  So unfortunately, the subject merits a lot of discussion and information. 

The book also includes a much-needed section on taking care of your family as a whole, making sure the siblings also get attention, self-care, and advice for handling family outings.  This is excellent, because these subjects tends to get ignored in the mess of handling the "autism crisis."  Unfortunately, ignoring your own well-being for the sake of others eventually wears you out, which is counter-productive.  A sad, stressed out family makes for a sad, stressed-out autistic person.  Happily, I'm starting to see more workshops and such available for siblings of special-needs people, and more for the parents as well. 

My last comment on the matter is that my original diagnosis was Asperger's Syndrome, rather than autism, as defined by the DSM-IVR.  So I did see a lot of myself in the pages of this book.  While I don't particularly think Asperger's Syndrome should be distinct from autism as a whole, I do think this book has an eye towards a specific section of the autism spectrum, and perhaps that section has mannerisms, tendencies, and behaviors in common.  The book would probably have been improved by having an actual autistic person review its contents, as I became miffed on a couple occasions by some apparent oversights in understanding our point of view, but it does fairly well even without that.

Read This Book If

You have an autistic child, especially one that blends better with their peers ("high functioning"), or seems to adhere to the "Aspie" stereotype.  Some of the advice in this book is fairly basic, but some of it I hadn't seen before.  All in all, I think the authors did a pretty good job putting this book together, and while it's certainly not everything you'll need to raise an autistic child, it's a pretty decent starting point. 

Wednesday, September 6, 2017

Reading the Research: Autism and a Lack of Surprise at the Unexpected.

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 deals with how neurotypical and autistic people react to sudden, unexpected changes.  The researchers had about 50 individuals, half autistic, half neurotypical, follow patterns of audible tones and images.  They made the patterns very predictable, right up until they didn't.  Then they measured the surprise reactions of the individuals. 

Apparently, the autistic people were less surprised in general when the patterns were broken, and the more heavily affected they were, the less surprised they were.  After running the data through computer processes, the researchers decided this meant the autistic people were expecting a more unpredictable (volatile) environment.  So when the environment was suddenly not following the previous patterns, they weren't as surprised.  The head researcher commented that if autistic people are expecting an unpredictable environment, they'd tend to rely more on their senses and less on their prior understanding of patterns, and that might explain why sensory overload is so common.

I do kind of wonder if that researcher doesn't have it backwards.  Or at the very least, a two-way street, or a self-reinforcing cycle.  So, for example.  I have sound-sensitivity.  That means that sudden noises, something falling off a shelf, a child shrieking outside, unexpected fireworks, etc, tend to freak me out and hurt me.  My poor spouse trips over himself to try not to cause noises like that, because he knows that.  When I'm at home, I can usually assume things won't fall off shelves, and there won't be fireworks... but there do seem to be children at many hours of the day, and sometimes things do fall or fireworks go off.  My environment, you see, is unpredictable, or volatile.  These things wouldn't bother other people, but they do bother me. 

In addition to that, my sensitivity isn't predictable.  A child shrieking won't necessarily bother me a lot some days, but other days I have to restrain myself from going out onto my porch and screaming at them to shut up.  Verbosely.  And very impolitely.  So not only is my environment volatile, it's unpredictably volatile.  So it seems silly to me to say, "Oh, these autistic people aren't building their expectations properly, and that's why they're expecting a volatile environment."  I'd be more inclined to say, "the environment, as the autistic person sees it, is volatile, therefore they are less surprised by sudden changes."  I'm sure there's still some decent research that could branch off that idea. 

I think the basic results, that autistic people are less surprised by the unexpected, are probably about right, though.  I don't react normally to sudden emergencies in traffic, and once, I dropped my laptop while I was chatting with an acquaintance.  He shouted in surprise at the sudden impending damage to the expensive machine.  I, on the other hand, went stone-faced, picked up my laptop, and kept talking while I examined it for damage.  He commented on how unusual that was, which is partly why I remember it. 

Tuesday, September 5, 2017

Legwork and Life, week of 9/5/17

Well, I feel tired and burnt out, which is the opposite of how you're supposed to feel after a weekend.  Especially a long weekend.  That's not very good, and I'm not entirely sure what's going on... but I suspect I'm going to be the last person to realize why, because that's how these things tend to work.  People really close to the problem usually have more trouble seeing it. 

My current mood and incredible lack of energy aside, my week wasn't terrible.  On Wednesday, I picked up my mother from the airport and spent some hours with her.  She was in town, along with an uncle and aunt, for some family event I wasn't involved in.  It was actually terrible timing, my period had just hit and I tend to be miserable the first couple days, but I rarely see my mother.  So I bucked up and we had a decent time.  Then there was dinner out with my grandmother and the visiting family.  It was, over all, a nice dinner.  The food was decent and my mother found something she could eat, which is tough for her on her specialized diet.  She even seemed to like it.

I did find out that I am, in fact, somewhat light sensitive given the right circumstances.  I mean, I knew I was sensitive when it came to the sun, but it turns out that a plain old flickery indoor light can drive me bonkers, if it's placed just right.  The overhead lights in our section of the restaurant kept flickering.  I kept count at one point, it was every 15-20 seconds.  For an hour.  All things considered, I think I handled it rather well.  But I did kind of want to tell them to just turn off the dratted things.  I don't think the rest of the group would have liked that much.  It's more pleasant to talk to people when you can see them, at least if you're neurotypical.

Most of the long weekend was spent at home, with Chris, discussing the future and dealing with things.  Chris just got a raise, which unfortunately was only enough to offset the cost of adding me to the insurance plan.  We're looking for other ways to save money, and will be taking a look at other options for car insurance and such soon.  But it's a tough subject to work with, and he's bummed about the situation.  It's pretty stupid, all in all, because his job and salary would be almost luxurious if he wasn't weighted down with so much college debt. 

Even stupider is that managing my various expenses is painful.  Between the supplements, chiropractic work, health insurance, and other necessities, it costs a depressingly large amount every month for me to even try to keep my life, sanity, etc, in balance.  That's the cost tallied before we even factor in the mental and emotional effort it takes for me to do my part.  And I'm supposedly "high functioning."  Ufff...  I spent a good chunk of this weekend being depressed about all that, but other than doing my best, there's really very little I can do about it.  There is no magic pill to make my difficulties go away.  It just stings more than a little to know I'm "high maintenance," especially when I feel like I achieve so little. 

Speaking of achieving things, I've never been terrible comfortable with my Tuesday-Wednesday-Friday update schedule, as it seems unbalanced to me.  So I'm going to swap it around starting next week to Monday (Reading the Research)-Wednesday (Legwork and Life)-Friday (Book Review/Musings/Topical).  Hopefully no one will mind.  I think it'd be nice to start the week off with something interesting to chew on, plus those entries aren't difficult for me and I can have them ready ahead of time.  Which means not stressing on Sunday night when I'm supposed to be relaxing.  Then everyone can read about my boring life on the most boring day of the week (sorry Wednesday, I hated you when I worked 9-5 jobs), and hopefully end the week with something interesting as well.  It's a relatively minor re-arrangement in all, I think, but it might help. 

Friday, September 1, 2017

Time, Spoons, and Energy

I wrote a blog post two years ago about Spoon Theory, which is a concept of limited energy to do things in daily life.  Recently, a friend linked me to an autistic blogger who wrote a similar, broader explanation of how much time it takes to be with people.  She titled it "My Gift is Time."  I highly recommend you read it.

She talks about how many hours it takes to be prepared and decompress from one outing, and the numbers are high.  A dozen or more hours to go someplace new for a hobby.  At best, six hours prep/decompression to one hour of fun.  I've never personally tried to ballpark the amount of time it takes me to gear up and calm down from activities... but I think that's because I tend to try to keep busy with other things, rather than taking notes about how bad I feel.  (I'm not sure that's a fair assessment of what this author does to unwind after events, but I definitely try not to think about how stressful an event was lest it stress me out more.)

Spoon Theory, too, talks about spending limited energy on tasks and people. The author of Spoon Theory suffers from Lupus, which is a physical disability, an invisible but powerful disease where the body attacks itself.  Like the author of "My Gift is Time," this author also makes careful count of how much effort an activity costs her.  She uses spoons as an easy-to-understand system for energy.  One spoon per activity, generally.

Hours and spoons, to count off time and effort.  Just like the last time I talked about Spoon Theory, I have no idea how to quantify the effort it costs me to spend time with people, go to new places, and do unfamiliar things.  It definitely costs me, and some days a lot more than others.  But I never seem to have a sense for how much energy (time, spoons, whatever) an activity is going to cost me, nor do I have any real sense for how much energy I start a day with. 

I've made comparisons for this in the past to the gas gauge on my first car.  Though my current car follows suit, frankly, so maybe the designers are doing the "it's not a bug, it's a feature" mentality about car design in general.  Gas gauges, of course, go from "full" to "empty."  Logically, when the tank is full, the gauge should read full, and when it's empty, it should read empty.  At half-full, it should read half-full.  Does this seem obvious to you?  It's apparently not to car designers.  When my car has 2/3s of a tank of gas, it reads that it's half-full.  When the needle points at "empty" it usually has at least three gallons of gas still in its 20 gallon gas tank. This is vastly counter-intuitive to me.  I'm sure the car companies do it so people won't accidentally run out of gas, but it puzzles and annoys me.  I can't trust my gas gauge.  All it does is tell me that I need to plan on going to get more gas "sometime soon." 

My mental and emotional gas gauge is somewhat the same, except that instead of starting at "full" and working its way slowly down, it starts at "maybe okay?" and stays there right until it swaps to "not okay" and, if circumstances prompt, "VERY NOT OKAY, DROP WHATEVER YOU'RE DOING AND GET OUT." (The last one is analogous to the car running entirely out of gas, and refusing to start/move.) Like the car's gas gauge pointing at "empty," I can run on "not okay" for a very long time.  I rarely actually run out of gas, at least in part because I'm very cautious about pushing my reserves. 

Life being what it is, though, I do have to push my reserves sometimes.  Recently I had some family in town.  I rarely see these particular family-people, because they live on the other side of the country.  No one's fault, just how these things shake out.  So even though I was tired, in lots of pain from female-organ cramps, and just wanted to curl up in bed and do nothing, I buckled up, changed into clothes suitable for wearing outside, and proceeded to spend upwards of five hours being social. 

This was worthwhile effort.  The outing was pleasant for a number of reasons.  But just like in the story of Spoon Theory, I had to borrow "spoons" (energy) from the day after, and from my reserves.  I tend to call it "borrowing spoons from the ether" because I have absolutely no idea how many spoons are in my reserves, I just have to pray there's enough to get me through the activity without needing to hide in a bathroom and cry, or leave early, or another of the various "emergency coping" mechanisms I've had to resort to over the years. 

Perhaps in another two years, I'll have developed a proper system for rationing my energy, time, and sanity.  Perhaps I'll be able to adopt Spoon Theory properly, having discovered a method of counting my "spoons."  Perhaps I'll develop a way to count hours of preparation and hours of recovery, like the author of "My Gift is Time."  Or perhaps I'll opt for something a like more like video games, and invent a system with Energy Points, and give various activities a difficulty rating based on how hard they are.  Perhaps some days will be so bad, I'll decide that every activity costs me twice the energy points.  And maybe I'll have days so nice, activities will cost half the energy points. 

Maybe reading a book for pleasure could restore energy points, or going outside for a few minutes to sit quietly in the sun.  Or meditation might do it, if I ever manage to slow my mind down enough to benefit from it.  Two years is a long time by some measures.  Let's hope I can manage it. 

Wednesday, August 30, 2017

Reading the Research: Emotional Control and 3rd Person Self-talk

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 a style of self-direction and soothing called self-talk, and outlines a "best practice" for using it.  Self-talk, or chatting to oneself, is used by a lot of people to help deal with various situations, from upsetting to organizational.  For example, saying, "I need to do errands today, and I should probably go to the library first and the grocery store last so the frozen food doesn't thaw."  Saying that sentence out loud helps prioritize and analyze the chosen course of action.  I believe that's because it activates more of the brain in one action, since your hearing also comes into play.  In this way, anyone can be better organized and regulated.

You can also use self-talk to help regulate emotions, and that's what this article covers.  The experimenters presented a series of neutral and disturbing images with the participants hooked up to a monitor.  Emotional brain activity was then compared as the participants used first and third person self-talk.  They found that third-person self-talk, saying, "Why is Mary upset?" rather than "Why am I upset?" allowed for much quicker emotional control, and without expending any extra effort.  The researchers theorized this effect was because it gave some psychological distance to the person's viewpoint, allowing them to view the situation as if they were talking about someone else.  And situations are usually easier to deal with if they're someone else's problem and you're just helping them think about it.

I found this kind of interesting for a number of reasons.  First, society has taught me that talking to yourself is a sign of mental illness.  Psychology slaps that myth down, as well it should.  There are a lot of kinds of self-talk, and most of it is self-regulating.  And it's just as well, because I talk to myself on a relatively regular basis when I'm alone.  I plan out trips, work through difficult decisions, and bounce ideas off myself.  Sometimes simply by hearing an idea spoken aloud, I can see the flaws in the idea. 

What also interested me is that I apparently opt for a middle ground between the studied self-talk patterns.  You see, I do not talk to myself in third person like the better emotional-regulators in the study.  Nor in first person, like the normal communicators.  I, in fact, mainly use second person in my self-talk.  I'll say, "Okay, we need to go to the store to get blackberries, flour, and salad ingredients, because we need that for dinner tonight," rather than using "I" or "Sarah." 

I don't think I do that because I view myself as a multi-part individual, though you can certainly make that argument. (I tend to think of my mind and heart as two separate entities when dealing with difficult situations.)  I suppose the closest comparison for what I'm doing would be the "royal we," where you can more or less substitute "I" for "we," but the convention requires the monarch to use "we" as a sign of their power... or something.  I've only seen the "royal we" used a few times in literature.

In my case, I think it's a compromise between first person (acknowledging that this is a problem that I am presently facing) and third person (getting some psychological distance from the problem to understand and analyze it better).  It feels disingenuous to me to use third person when talking about a personal problem, particularly since there are a lot of Sarahs out there, and why am I sticking my nose into their lives if they haven't invited me to help them with their problems?  But I guess I tend to shy away from first person instinctively in difficult matters.  I'm not really sure why, but it would make sense if it was specifically because of the psychological distance thing. 

Regardless, it's potentially valuable information for anyone that wants to be better at emotional regulation.  If you already practice self-talk, a valuable experiment might be seeing if shifting your self-talk to third person helps you. 

Tuesday, August 29, 2017

Legwork and Life, week of 8/29/17

It was quieter week this week, which was good because I feel like I'm struggling again.  I can't tell if it's an internal thing, like my biology is off, or an external thing, like my circumstances are getting worse. 

The Slow Decline of an Apartment Complex

There's a good argument for the latter, at least.  I haven't made a huge stink about it anywhere, but I'm watching the apartment complex I live in slowly deteriorating.  When Chris and I moved in, the lawns were green and well-kept, though not pristine.  The buildings showed some wear, but weren't falling apart.  All the trees were alive and seemed to be thriving.  The landscaping was neat and tidy.  The neighborhood was quiet, even during the summer with the kids out of school.  People would come through with trash-pickers every month or so, to keep the place tidy.  It wasn't paradise, of course, but it was a pretty decent place to live. 

So naturally, all of that had to change.  I noticed the noise level increasing around the 1 year mark.  People seemed to suddenly consider it perfectly acceptable to yell conversations across the parking lot at midnight, blast their car stereos at any hour, and not chastise their children for howling like banshees in the morning.  This was awful for my attempts to sleep, focus, and relax, naturally.  My brain doesn't politely tune out stupid people yelling across parking lots, it considers that information just as relevant as the book I'm trying to read, or the music I'm trying to listen to.

Next, the grass started getting worn and dying.  The edges of the yard areas got more and more ragged and bare.  Several of the trees between the buildings died in the windstorms, and began tottering dangerously.  Only one of those trees has been removed to date, though a couple more are marked for removal.  The outsides of the buildings have gotten shabbier, the roofs missing shingles in places.  One really nasty windstorm dropped a massive tree branch onto our neighboring building, which we dutifully reported.  The branch proceeded to sit there, ignored, for weeks, until it was replaced by... a tarp.  The tarp has now been there for months. 

The latest and perhaps most telling sign... is that the apartment complex people apparently no longer care about the lawn at all... because there are weeds everywhere.  Most species of grass aren't excessively hardy, and so lawns have to be carefully maintained and herbicides used to keep other plants from invading.  This has apparently not occurred anytime recently, and the weeds are taking advantage, popping up everywhere, including in the stony, grass-free area. 

I'm really not sure how the apartment manager thinks she's going to get more tenants with things in this state.  Especially at the prices they're asking for these units.  I can't wait to leave... 

A Trip to the Movies

In happier news, I got to go see a movie with Chris last week.  We decided to have some together time mid-week, in lieu of my usual Wednesday evening walk with a friend.  Due to the kindness of a friend of mine, we only frequent one particular theater, but get free tickets.  (We do try to buy concessions, though, since that's mainly where theaters actually make their money.)  So we caught an evening showing of The Dark Tower, which is a movie based loosely on a novel series by Stephen King.  I was unfamiliar with King's writing and the novel series, so I was able to enjoy the movie somewhat.  (Apparently the movie, like many book adaptations, ticked off the book's fans.)

Chris mainly wanted to see it for the gun-kata (fancy gunplay tricks and fighting).  There was some of that, especially at the end of the movie.  But it wasn't really over-the-top, and the movie itself, while set in a fantastic world, was somewhat grim.  It did end "happily" at least, so we didn't walk out of the theater bummed and crabby.  Well, I did, but that's because one of our fellow movie-goers thought it was a good idea to vape inside the theater.  Turns out even if the smoke is pretty-smelling and presumably non-toxic, it still makes my throat close up.  I am now firmly of the opinion that you should always smoke outside, regardless of what you're smoking, and I will literally miss part of my movie to not experience that again.

The movie itself mostly left me with a curiosity about that fantasy world in general.  I picked up the first book in the series after a couple days, but it read like a fever dream... and a vulgar one at that.  I'm unsure of whether this book is indicative of the rest of Stephen King's books, or whether it was merely one of his early works that... perhaps didn't get enough polish.  Or perhaps this is simply a writing style I flatly dislike and thousands of other people love.  Either way, the movie made for an interesting night out together. 

Chris noticed my unhappiness with the smoke and decided we should get drinks to help my throat at a nearby restaurant.  So we sat for half an hour or so and ate an appetizer and sipped water and other things, and that was a nice place to discuss the movie and just be together.

Supporting the Parents at ASK

The last event of note this week was my monthly trip to the parent support group for Autism Support of Kent County.  It's not that I'm a parent or am likely to be one, that's not why I go.  It's that going through the difficulties of raising a kid on the spectrum can really narrow your focus, making you blind to viewpoints other than your own.  And it can make you lose hope, with things being so difficult.  So the parent support group is there to help develop connections between parents, educate all attendees on various local services and options, and in general be a supportive, safe place for parents of kids with autism to talk about their problems. 

I attend this group in order to provide what I tend to see as "the missing perspective" in these discussions... that is, the kid's perspective.  If you don't have autism, you are going to have a hard time understanding what's going on with your kid, even if you document what's going on, read tons of books and research, and try your best.  And your kid can't necessarily tell you, either.  I suspect that I was fairly uncommunicative growing up, and I was seemingly fully verbal.   (I say "seemingly" because while I could absolutely read a book and tell you what it was about, I was extremely more dense about what was going on in my life, what my emotional status was, and what things would be "fun.")

Attendance this month was pretty slim, with just a couple parents, a visitor from the YMCA program, and one of the regular ASK board members.  The board member gave a presentation, roughly themed around, "What I've learned in 30+ years of being a parent to my autistic son."  It had a heavy emphasis on dealing with the government, Medicaid, Supplemental Income, and various Michigan-specific laws meant to help people with disabilities earn money and save money.  This was helpful for the parents that did show up, both of them quite new to the autism world, and both struggling to get Medicaid and the services that come with it.  I'd personally heard most of it before, but was able to add in a few tidbits here and there. Sometimes I learn things about the parents' struggles, or new and interesting options for treatment, and that's almost as valuable as being able to help out the parents directly. 

This coming week's events include lots of preparation for Labor Day weekend (I'm going to run an extra long game of Dungeons and Dragons, most likely, which means lots and lots of preparation), dinner with visiting family, and the monthly Chore-palooza.  Chris and I tend to save the larger chores for the first day of the month, or the Saturday nearest that day, and then do those chores together.  This is much more to his preference than mine: I tend to believe you should just do the chores ASAP, without requiring other people to help you or work alongside you.  But Chris' upbringing was very different, and so I've had to compromise between my optimal work schedule and his.  It's working, mostly.