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. 

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...?)

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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.