Legwork and Life, week of 5/30/18

It's been a week, guess it's that time again.  I seem to be doing kind of okay this last week, so I guess it must've been a good week. 

There's been some progress on the church incident from a few weeks ago.  I talked with the church official I mentioned last week, and what he didn't do in communication prior,  he made up for when I went to discuss the matter on Thursday. 

So I ended up giving him an idea of what my specific diagnoses are, and how that plays out into needing accommodations at times.  We discussed the available side rooms, and he's going to elbow the budget team to see if we can get the service piped into the library, with an adjustable dial.  That would make it functionally the same as the living room, which was the room I'd been in.  That costs money, and they don't have a ton of it, but he'll do his best.

He also apologized on behalf of the church, which was thoughtful of him, though admittedly it cost him nothing.  More notably, he's going to talk to the church staff who was involved in the incident, and see if he can't get an apology from them. Finally, there's apparently a committee being formed around accessibility for many kinds of needs, and he's invited me to be a part of that committee.  I tend to be cautious about my time, so I told him to keep me in the loop about it.  Hopefully as more details emerge, I can make a better decision... or at least lend my feedback to whatever decisions this committee ends up making. 

In other news, Memorial Day happened.  My spouse, Chris, was home, which made for somewhat uncomfortable work time.  It's weird to have one person on vacation and the other having a normal work day.  We didn't do much, vacation-wise, but he did come with me to exercise, which also meant going out to lunch with my dad afterwards.  So that was nice. 

Chris having vacation and being around here during my work hours reminded me of something I've been asking myself a bit over the last year...  Namely, should I have vacations?  Technically, this blog keeps me busy for most of the week, but it only updates 3 days per week.  That makes me feel kind of lazy when it comes to taking days off, because it's not like it's a 40 hour week or anything.  But that said, even part time workers get national holidays off.  So it seems like I probably should have holidays off... but it's hard to convince myself of that. 

I can't truthfully say to myself that I wouldn't like to have a holiday, and not worry about a blog post on thus and such day (like say, Christmas)... but I worry that breaking my flawless update record will end in procrastination and the blog falling by the wayside.  Perhaps that's overzealous of me, but...  I guess I'll have to chew on the idea more.  One of the webcomic artists that I follow gives herself 6 sick days and 6 "relax" days per year.  Her webcomic updates twice a week, and probably takes hours longer to make than my blog posts do.  That philosophy seems like a nice, adult way to manage having a life and still keep yourself accountable, so I guess if I do adopt something, it'll probably look like that. 

The last thing that was salient this week was more in my "fun" sphere of things than in my work and socialization zone.  My spouse and I play an MMO together, and we wanted to do a particularly difficult part of the game.   But we couldn't find a good group of people interested in doing it.  A friend of ours in the guild, referred us to a particular group that we could try that difficult part of the game with.  They accepted us, and the group turned out to be extremely competent.  We completed the difficult content with... remarkable ease.  It was a really cool experience. 

It got me thinking.  These particular people play this MMO at a near-professional level.  They try (and succeed at) some of the hardest parts of the game, which require excellent reflexes, attention to detail, visual processing, coordination, and a host of other skills.  The fact that I was allowed to tag along, and actually mostly pulled my weight, really makes me happy.  Because I have shoddy visual processing and kind of meh reflexes, and I still managed to be pretty okay.  This is in part because I worked hard to improve those things, and in part because I mostly knew the content we were trying to run.  It also tells me that if I really wanted to be as good as those people, I probably could be.  Which is itself pretty cool. 

I really doubt I ever will be that good at the game, though.  Becoming that skilled requires a tax of a whole lot of time and energy, and I am short on both of those.  Also, becoming an elite gamer does not markedly make the world a better place, whereas educating about autism and disability issues... does.  Hopefully. 

Reading the Research: Deceitfulness

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 one unfortunate common side effect of autism: the tendency to not recognize when one is being lied to.  The study itself was relatively straightforward, simply having autistic people watch videos of people lying and not lying regarding a test.  People with autistic traits (but not a diagnosis) or with an ASD diagnosis were significantly less likely to recognize a liar.

This study is somewhat remarkable due to the fact that it also tested the general population for autistic traits as well as giving everyone the lie detection test.  Depending on how autism is defined, older people like myself, while definitely still "disabled" in some senses, may not actually qualify for the DSM-5 diagnosis at the current time.  Ironically, the disability aspect is often still there.  The difference is that we've learned so many adaptive strategies, we no longer seem autistic, and therefore the casual observer insists we must not qualify.  (This is a particularly common accusation for a verbal autistic adult to receive from a parent whose child does not speak, and does not currently blend into society at all.  Their assumption that their child and the autistic adult are fundamentally different is flawed, but that's another entry entirely.) 

The researchers suggest training as a way to handle the disparity between neurotypical lie detection abilities and autistic lie detection abilities.  Personally?  I think that'd be fascinating.  If someone would like to pinpoint the common traits that accompany lying, and make a video series that shows them visually and aurally, I'd watch the whole thing.  If it was well-made, I'd link it to every person I know who has autistic traits. 

The thing you have to keep in mind with stuff like this, though, is that lying is a recreational pastime in US culture.  The most famous example of this tendency is the dreaded question: "Does this dress make me look fat?"  The truthful answer, whatever that might be, is irrelevant.  The correct answer is the most soothing, reassuring version of "no" you can manage.  Extra bonus points if the dress is hideous, and you manage to redirect the person's attention to a different dress without upsetting them. 

Other common lies include the traditional response to "How are you?" ("Just fine, thanks!"), and the customer service standard goodbye ("Have a nice day!").  Like many autistic people, I dislike lying to people.  So when I'm in company I'm more comfortable with, I don't say "just fine, thanks" when asked how I'm doing.  I'll often default to something more like "just plugging along," which is less indicative of a positive mood.  If I know the company I'm in fairly well, I'm more likely to pause and try to give a truthful answer.  Which, given me, is usually a more negative one.  Hooray, low-grade depression. 

I actually get around the customer service "have a nice day" by saying "you too!" and actually meaning it.  The saying is that you can judge a person by how they treat waiters, customer service staff, and fast food workers.  I think that's true to a point, and I always try to keep in mind that those people are also people.  My hope is that they use their neurotypical superpowers to read my expression and tone, and recognize that I literally mean it.

With those three examples, knowing the person is lying to you is of dubious use.  So such training would probably need to emphasize the difference between cultural falsehoods/white lies, and more serious types of lies.  It should also describe how to make that judgement on the fly, and how to safely react if it's the latter type.  Generally speaking, you don't want to tell a human predator directly that you've spotted they're lying to you, how you spotted it, and that they should bugger off.  That would be the natural tendency for a lie-hating autistic person.  Instead, you want to make a polite excuse or lie to leave immediately, preferably in trusted company, and then do so. 

Even if the training they came up with didn't cover all of this, though, I'd still watch it.  I'd bet I'm still below the general population in my ability to recognize lies.  

Sensory Processing Difficulties: Part 1 (Touch)

(This is part 1 of a series on sensory processing difficulties.  While I'd initially assumed I could fit them all into one post, the post would unnecessarily long and I really don't want to bore you.  So bite-sized chunks it is!  Here's Part 2 on the vestibular and proprioception senses, part 3 about sight, and part 4 about taste and smell.)

Why Talk About This?

A book I'm reading talks about sensory over- and under-sensitivities in children, and how this is a distinct phenomenon from autism, but that it often goes with autism.  And recently there was an incident in church where a staff member shooed me out of the side room I was using to accommodate a sensory overload.  So I thought it might be interesting for you to have some time inside my skull when it comes to sensory issues in an adult autistic.

The book I'm reading calls for seven senses, rather than the traditional five, which is probably lowballing it, but as good a place to start as any.  The book points out, and I'll underline, that these seven senses are not separate input channels.  They are all processed at once, often several senses for each part of the brain that does the processing.  The autistic person does not get to try to turn off their sense of hearing because it's hurting them, but still leave the vision, touch, and taste senses active.  That isn't how it works.  It's all in the same place: the brain.  So you can distract the whole brain from the painful sensory experience, but you need to distract the whole brain.

One more very important note: all the reactions I'm going to describe to you are involuntary.  I literally do not control how my brain reacts to certain sounds, or to certain types of touch, or anything else I'll tell you about.  I did not choose to be the way I am, I simply...am.  The next time you see a child having a tantrum in a public place, keep in mind they might well be like me... just not as old and as well-practiced at handling their suffering in a socially-appropriate manner.

Many Kinds of Touch

Touch is the first and most basic sense.  But there many kinds: 

• light touches, like someone brushing your arm, or the texture of grass, sand, or dirt.  This also encompasses having your hair brushed, washing your face, and textures felt in the mouth.  (This is the part of touch that most people with sensory issues have trouble with.)
• deep pressure, like massage, bear hugs, rolling, bouncing, etc.  
• vibration, like the feeling of touching a washer on spin cycle, or one of those battery-powered back massager devices.  
• temperature, your hot and cold senses that spare you from both holding cold packs too long and burning your hand on the stove.
• pain, which covers everything from a light scratch to broken bones.  

As a child, I couldn't stand having tags in the back of my shirts.  My poor mother had to painstakingly cut the tags out of every one of my shirts.  The same was true of my underwear, I believe.  This is a form of light touch sensitivity, and I continue to have difficulties with it to this day.

I no longer have to snip the tags in my shirts or undergarments, but sometimes when my spouse touches my arm lightly, in affection, it hurts instead of soothes.  The same is true with my back.  Since I got my hair cut short, my spouse will also pet and gently scritch my head.  The former is nice, the latter hurts after a while.  It's emotionally painful for both of us when I have to tell him to stop doing something affectionate because it hurts, but the other option is for him to be causing me physical pain while thinking he's being sweet and affectionate.  There really aren't good options here, is what I'm saying.  I try to be gentle and tactful about it, but I know it hurts him, and that hurts me.

Haircuts Are The Worst

Another way this touch sensitivity manifests is when I get my hair cut, or need to wear jewelry.  While I now tolerate tags on the necks of my shirts, I do not take easily to wearing things around my neck.  And I really don't take kindly to having things put tightly around my neck.  This is most noticeable in my current life when I get my hair cut.

Haircutters tend to fasten a paper neck band around your neck, to keep the hair from getting down your shirt.  I can't stand that.  I have to put my hand to my throat to offset the nearly-unbearable sensation of choking and feeling trapped.  Having that extra sensory input from my fingers at my throat helps confuse the tightening feeling enough that I can tolerate it.  So instead of ripping the stupid piece of paper off and screaming at the poor haircutter, I can instead, seemingly calmly, sit through the application of the neck band. 

After the neck band stops tightening, I can then make myself learn to tolerate the feeling of having something around my neck... particularly if I don't move too much.  That lets my brain try to tune out the feeling as "irrelevant," which it's not great at, but it sometimes succeeds at. 

This unpleasantness has not, obviously, stopped me from getting my hair cut. (And dyed blue, check it out!)

...but it very much does make the process a lot more miserable than it would be otherwise.  Another way this light touch sensitivity manifests around haircuts is afterwards.  Even with a tight neckband, there's inevitably going to be some little bits of hair that escaped into your shirt or stuck to your neck.  Most people just brush these off in annoyance, and after a day or so, they're basically gone anyway.  I... have to go home and use a lint roller to get them off, and can think of little more than doing so until they're off.

If the house caught fire while I was doing this lint-roller hair-bits removal, I would take the freaking lint roller out of the house with me, forgetting the clothes I took off to get at all of my neck.  That's how bad it is.  I am almost invariably miserable when I get home from having a haircut, and don't stop being miserable until all the tiny hair-bits are gone and I've had some time to decompress from my misery.

All is Not Lost, Thankfully

It is possible to accustom oneself to things like this, by the way.  The book has suggestions for how to make this sort of thing a regular activity for children, but autistic adults like myself are kind of on our own unless we're involved in therapy for it.  Which isn't to say we can't do it ourselves... it's just difficult and not very intuitive.

As I type this, I am currently wrapped in a light blue, ridiculously soft and warm polyester blanket.  It's the kind that's almost like short, extremely soft, smooth fur.  My spouse noticed it in the store, and we were looking for a nice warm, blue blanket.  But when I first touched it, I immediately yanked my hand back in discomfort.  It was too soft!  My brain couldn't process the sensation, it was too overwhelming.  This startled my spouse into amusement, which annoyed me. 

I think I glowered at that silly blanket for a couple minutes, scowling as I made myself touch it over and over.  Just lightly at first, and not very much of it, and I still had to pull my hand back due to sensory overload.  But as I kept at it, I started to be able to handle the sensation.  It must have looked pretty silly, a grown woman scowling at a blanket and touching it repeatedly while her spouse stood by.  But nobody threw me out of the store for being extremely weird, so whatever.

We ended up buying the blanket after I was fairly sure I would be okay with it.  And now obviously, I am.  It still feels a little weird to me to touch with my hands, but it no longer overwhelms me, and the blanket lives by my computer chair to keep me warm when the basement is cold.  Which it usually is, so that blanket gets a lot of use.

Texture of food is another complication in this category.  It's not one I've paid a whole lot of attention to, but my spouse is actually pretty picky in some cases about what goes in his mouth.  I was an excessively picky eater when I was growing up.  It drove my mother to frustration quite often.  We ended up having to establish a list of foods I didn't have to eat if they were served to me.  Broccoli, cauliflower, brussels sprouts, and other strong-tasting vegetables tended to top that list.

I'd always assumed my dislike for foods was taste-based.  After all, many of those vegetables do taste pretty strong.  But it may not have been that simple.  I no longer need to have a very limited diet, and make a point of trying new foods as a matter of course.  But I may have to pay more attention to how those foods feel in my mouth.  I do enjoy just-barely-soaked cereal (mostly crunchy, with subtle hints of sogginess) and ice cream blended with M&Ms (which are mostly creamy with some crunch
/and/ subtle hints of sogginess).

All of the above has been about light pressure, and I'm sure if I gave it a week, I could think of more examples.  But that's only one part of touch, so I'd best move on.

Deep Pressure and Vibration

Deep pressure is what I usually advise my spouse to give me when his gentle touches on my arms hurt, or when he accidentally tickles me.  His actual response is usually to stop touching me entirely, which is kind of saddening, but understandable.  I'd much rather he press harder with the arm-touches, thus solidifying the sensation and making it more tolerable.

I do like massages, as a rule.  Not only do I suffer basic neck pain, the deep pressure type of touch is very easy to pinpoint and process.  So unless it actively hurts something, it's definitely the way to go.  I used to give bear hugs a lot as a child.  I have no idea if that was just because I was odd, or because I liked the sensory feedback of giving a tight hug.  Usually people protested, though, so I think I eventually stopped.

I also bounce my leg when nervous.  This is actually a relatively common nervous habit for all kinds of people.  I actually taught myself how to bounce one leg quickly and slightly, mimicking a friend of mine who had hypertension at the time.  (He actually did both legs at the same time, but one leg was hard enough to learn that I stopped there.)  It became a habit, and now I do it when I'm seated and anxious.  So, often. 

Vibration type sensory input is relatively scarce in modern life.  When I've run across it, I haven't really had much issue with it, beyond it making my hands numb after a minute or two.  I'm not actually sure if that's a common experience or not, but either way, I tend not to hold onto the washer or a battery-powered back massager much.

Temperature

I do seem to be more sensitive to hot things than the average person.  When I was younger, I kind of figured that was probably just the fact that I was young, compared to the people I tended to talk to, who weren't.  As you age, you gain calluses on your hands, and the nerves that sense temperature take damage over time, which desensitizes you somewhat.  So something that's a little too hot for comfort to a small child would be just fine to a normal adult.  I would often complain about water being too hot, when my mother thought it was just fine. 

This comes up in my current life when I'm trying to draw a comfortable bath, actually.  I'm still trying to figure out how much boiling water to add to my tub before filling the rest with hot/lukewarm water from the water heater.  Too hot, and I sweat and am uncomfortable in the tub.  Too cold, and it's not relaxing.  

Speaking of too cold, I'm not really sure how my cold sensitivity lines up with everyone else's, but I have very little tolerance for carrying cold things in my bare hands.  And if my whole body gets cold, I get miserable.  Like, pathetically miserable.  "Small child whining and sulking" miserable.  I have very little control over this, which is why I really try not to let myself get that cold, ever.  The last few times it happened, years ago at this point, I felt very stupid and embarrassed as soon as I warmed up.  But not 'til then.  

I had always kind of assumed that was a PTSD-style reaction to getting chilled down to my bones in high school, when I was on a rowing team and the coach sent us out half an hour too early... in 40 degree weather... and the rain.  So we sat out on the river for about an hour, slowly getting colder and colder, until the race actually began.  At which point we rowed on cold muscles and did not do terribly well.  

My parents took me back to their car after the race, had me take off most of my clothes, and turned the heat on full blast.  It took an entire hour of that to warm me back up.  It was a pretty awful experience and I resent that coach to this day for that incident and her general treatment of me and the team... which I think is quite fair, frankly.  But maybe it's not the whole story, I dunno.  

What A Pain

Pain is a complicated one.  There's two factors to how a person deals with pain.  There's your "pain threshold" which is the level of pain you tolerate, objectively, before recognizing it as pain.  And then there's your pain tolerance, which is how well you tolerate pain overall.  Someone with a high pain threshold and tolerance would seem like an action hero, walking away after breaking bones and seeming not to care.  Someone with low tolerance and low threshold would be just the opposite, complaining of small hurts as if they were much worse than they are.  The words "wuss" and "pansy" are usually used to describe these people, which is kind of cruel when they're experiencing those hurts as much worse than someone else would. 

Autistic people, and others with eccentricities in this form of touch, may have one of those two examples above... or they may be in the weird spot where they have a low pain threshold but a high pain tolerance... so they might easily recognize their foot is hurt, but not recognize that the bone is, in fact, broken, and they need to go to the hospital immediately.  They may just assume it will heal over time, as most injuries do, and if they just leave it alone, it will be fine.  This is markedly unfortunate when broken bones and more serious injuries are involved.

Personally?  I've never broken a bone, beyond a hairline fracture in my skull when I was 1 or 2 years old.  I don't remember that, so it's not terribly useful data.  The closest I've gotten to a broken bone was a few years back, and it's the only semi-major incident I can recall.  

So I have these shelves that are actually closet doors, separated by cinder blocks.  They're great, and hold all sorts of things... but at the time I'd thought it would be okay to put my 20 pound weights on the shelf.  It was fine for months... until I leaned on the shelf juuuuust the wrong way while getting out of bed at 2am.  

The shelf overturned, and its contents fell on my foot.  This included the 20 pound weight, which unfortunately managed to catch some decorative spear-like objects on the way down.  The spear-like objects were driven into the top of my foot by the 20 pound weight.  It being 2am, I was rather foggy, but I retained enough coherence to explain what had happened to my startled spouse, go to the bathroom, clean out the injury, put a bandaid on, use the bathroom, and go back to bed.  

Anyone with basic medical knowledge can probably guess what happened next.  I woke up with my foot in a small puddle of blood, within an hour.  So after that, I cleaned it out again and made sure it had stopped bleeding before I taped it up (with gauze and medical tape this time, not a bandaid).  

I'm not honestly sure whether my inability to assess the damage was simply that I was extremely tired, or because my pain tolerance is higher than average.  I'll let you know if I have any other exciting incidents that reveal more...  

What I'm Not Talking About

I am, as I've repeatedly pointed out in this post, an adult with a spouse.  That means there are some kinds of touch that I haven't discussed here.  Sex is its own kind of complicated, but you can probably guess from the things mentioned above that it's more complicated for me than it is for any given person.  I don't know if my blog has a rating, like PG-13 or whatever, but I do not, as of yet, feel terribly comfortable discussing my sex life on this blog.  

If that changes, I expect the resulting posts would probably be useful to adults on the autism spectrum, as well as parents needing to teach sex ed to their children.  It's not that I particularly feel like sex is shameful, like some branches of the Christian church preach, or that I feel like everyone should be private about their sex lives.  I, personally, just do not feel comfortable discussing it right now.  Sorry/You're welcome, pick whichever response suits you better.  

Summary

So this week I've given a rundown on what kinds of touch exist, and a number of examples as to how my body deals (abnormally) with these categories.  Like most people with touch sensitivity, I mostly suffer difficulties with aspects of light touch.  This affects my relationship with my spouse (negatively), my experience with haircuts (very negatively), and possibly my experience of food (positively now, negatively in the past).  

Next week I'll deal with what some people consider facets of touch: proprioception and vestibular senses.  Proprioception is your sense of where your arms, legs, and body are in space, and it relies on being able to understand feedback from your joints.  The vestibular sense is linked to your inner ear.  It's your sense of how fast you're going, whether you're accelerating, and the pull of gravity itself, which in turn affects your balance.  These two senses are the two excluded from the "standard 5 senses," but they're extremely important.  Without them, nobody would ever manage to play sports with any kind of coordination.

Legwork and Life, week of 5/23/18

This week "feels" like it was a balanced week, but honestly, in review, I think it was probably more good than bad.

The church incident I related last week, with the being shooed out of my accommodation area, is going to be reviewed by a church official I'm familiar with.  Actually, it's the same person that did my premarital counseling... because that's pretty much the only "office staff" person I feel sufficiently familiar with to relate my situation.  I'm somewhat annoyed that the response was very last-minute, and the mediation for the incident is going to have to wait until Thursday morning... but I'm also fairly sure this particular staff member is remarkably busy with other facets of the church life, and the fact that they're trying to fit me into the week at all is probably a stretch for them.

So meh.  Grumpy about the whole thing, but you do have to be reasonable about others' time and needs.  Speaking of others's needs, one of my readers who attends the same church stopped me on Sunday to express her support and relate that sometimes she has similar sensory problems.  I was rather startled, actually, as I usually don't hear from my readers much, and one of my strongest, most enduring life lessons has been: "You are utterly alone, including your specific problems."  So that was a really heartening moment in an otherwise disheartening day.

Another highlight from the last week was going to the farm market and a store called The Cheese Lady with Chris and my mother.  It wasn't the prettiest day for it, but we were hoping to pick up some meat from the humane farm that sells there, and snag some fresh vegetables and nice, Mom-friendly cheese.  Sadly, the humane meat farm was just leaving as we arrived, but the rest of the farm market provided lovely, inexpensive produce.  There was a lot of asparagus (blech), but also things like fancy lettuces and other greens, potatoes of many colors, berries, and a truly astonishing number of fresh flowers or potted flowers.

I do kind of wish we'd get to the farm market more often.  Their produce tends to last so much better  than the stuff from the store.  But I guess part of the problem is the unpredictability of the vendors, and the fact that it's not one-stop-shopping the way Meijer is.  Also it's not a 24 hour enterprise, and Meijer is.  Truly, I am ridiculously spoiled.

Anyway, the Cheese Lady had no disappointments.  With over a dozen each of sheep and goat cheeses, there was plenty to choose from... and despite that I need to be cutting down on dairy, I did indulge in my favorite cow-milk cheddar. It's just so ridiculously good.  Mom was able to find a selection of cheeses to suit her diet, which included at least one that should be good on pizza.  So that's fun.  It's annoyingly hard to find foods she can eat without having to be very careful, but I think this place might be okay for that.

My Monday evening got shot by getting my blue hair redone, and then cut nice and short.  These trips almost invariably take hours, and I'm really starting to wonder how long I have the patience for it.  Besides taking literally 5 hours at present, the process involves breathing bleach and harsh chemicals while they sit in my hair, and putting up with the loud noises that accompany the functioning cosmetology school (screeching chairs, loud music, chatter all around).

The crowning awful part, though, is common to any short hair haircuts... the process of trying to get all the little pieces of hair off yourself afterwards.  While most people can probably just brush themselves off a bit and ignore the rest until it goes away... I get home, shed my shirt and top clothes, and proceed directly to the bathroom, where I have to use a lint roller to get all the tiny hair-bits off myself.  They itch abominably and drive me nuts until I get them off.  After that's done, I shove my head over the sink and proceed to ruffle my hair until it stops raining tiny blue hair-bits.  This can take a while.

Normally, haircutters tie a band around your throat, in addition to the cape, to keep the hair from getting down your shirt.  And they did do that here.  But they didn't put it on tightly, because they know I have problems having stuff tightly around my neck.  Like the itchy hair-bits, that also drives me nuts.  I'm sure there's a solution of some kind, like a reverse cone of shame for dogs, or something I could hold at my neck rather than having it tied there... but I haven't an engineer to come up with one, and I'm not sure it'd be allowed in the school even if I did have one.  So in the meantime, I tend to end all my haircut/color appointments worn out and miserable.  But hey, now I'm set for like 7 weeks, so that's good.  I did get some good progress on reading a book to review for this Friday, so it's not like I wasted any of the time, either.

In happier news, I'm well on my way to having a successful bath experience.  I did try my pot-on-the-stove-heated water idea again, and this time I managed to get the bath water to "maybe 5 degrees too hot" instead of "scalding."  Much more comfortable.  I used the jets again, and added some bath salts.  It was a pretty nice experience... until the jets stopped and I noticed the water was all full of tub scum.  I'd hoped I'd gotten rid of that after cleaning it a few times, but apparently not.  So that was gross.  It didn't entirely ruin the bath, but it was an unpleasant note to end on.

As I didn't want that to be the norm for my baths, I decided to research how one cleans a hot tub... and it turns out you can usually just fill the silly thing, add bleach, turn on the jets, and walk away.  So that's what I did.  I already had bleach in the house for use with the washer (which you should clean once a month by running an empty wash cycle and adding bleach), so I simply poured about a third of the container into the tub as it was filling.

Somewhat sillilly, the bleach proceeded to foam up a whole bunch, resembling nothing so much as a death-bubble bath.  I resisted the urge to play with the foam... but it really did look inviting.  But of course the water was ice cold, and the foam smelled like bleach.  Also, chemical burns are definitely not in style right now.  Anyway, after that had finished cycling, the tub had to be drained and then refilled with clean water, because bleach baths are never the answer.

Hopefully sometime this week I'll get to try the tub again, and this time it won't have scum in the water, and the temperature will be closer to "just right."  I'm looking forward to it.  

Reading the Research: Towards Universal Communication

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 amused me because I recently got annoyed at the proliferation of emojis in modern text conversations, but this usage of them serves to unequivocally clarify communication, rather than complicate it.  The idea was to make a universal "scale" for ranking things like foods or experiences.  Using emojis, the scale would be useful in any culture where smiles mean "good" and frowns mean "bad."  Because of the historical similarities in human psychology and the Westernization of the world, that is almost all of them.

The scale looks like this, and the comment's textual explanation of the scale is probably entirely unnecessary:

Most bad <----Bad------Kinda Bad-----OK---Kinda Good---Good----> Most Good

The researchers were really more going for a scale useful in any culture, regardless of language, worldwide, but this scale meant to rate products for businesses might also find a use for people with communication and language disabilities.  For example, if a parent wants to gauge a kid's mood, or get a sense for their very favorite foods, they could use this scale to get a more nuanced response than simply "good," "OK" or "bad."  It's a seven point scale, and the testing the researchers have done so far is consistent across age ranges in children. 

Personally, I think it'd probably be helpful to teach all children to identify their moods based on something a bit more complicated than "good" "OK" and "bad."  But maybe they automatically do that after a certain point in development, particularly now that emojis are so widespread.  I don't think I made the differentiation ever, growing up.  And unfortunately the answer to "how am I feeling?" was almost invariably "bad." It could have been the third on the left (kinda bad), there, instead of the leftmost (absolutely awful).  Maybe, even, with that graphic for "OK," I might've chosen that some days. 

Then, too, it's helpful for working with a child to know if a food is their most favorite food ever, or whether they just sort of like it.  Since the children in the test used the entire scale to rate their experiences and opinions on foods, it would likely be similarly helpful for any child.  Also, any adult with communication difficulties might make use of this scale to quickly give a nuanced opinion on a proposed course of action, a food, or their mood at the moment.

I'll be curious to see how this develops, and whether it makes it into educational systems or not.  I'd certainly lobby for it to do so.

Book Review: All About IEPs

Wrightslaw: All About IEPs is a comprehensive guidebook to the laws and regulations around Individualized Education Plans.  As most autistic children in the US end up with an IEP, and it's one of the most common problems I hear about from parents with autistic children, this seemed like a fortuitous find.  And it was!

First thing: don't be worried about the readability of this book.  I tend to mentally prepare myself for exhaustion when I see hints that lawyers were involved in writing something I'm about to read... but despite the law-firm-sounding name, Wrightslaw has actually put together a fairly plainspeak guide.  Normally one can expect a certain level of...  fine print, I guess?  Evasiveness. And just in general, a lack of clarity.  The authors of this book clearly made a point of avoiding that convention in favor of plainer answers, as much as possible.  I strongly approve.  I get very tired of trying to sort through Legalese, as I call it.  I much prefer simple, concise, clear wording.

My second major impression of this book's contents is pleasant surprise.  Generally when one mentions "education" I think of academics.  But whoever wrote the laws governing IEPs was apparently very aware of how truly different one child can be from another.  As such, IEPs can include everything from transportation to therapy to assistive technology.  From the stories I'd heard, I kind of assumed the IEP was only meant to help a child learn math, reading, writing, etc.  But in fact, if deemed appropriate and necessary for the child's development, the school can provide things like ABA therapy, social skills groups, a wheelchair, or even a laptop for taking notes on.

I had no idea so many things were covered under the law, and it's flatly astonishing to know that someone (probably many someones) gave so much thought and concern to a population that most people wish would just disappear.  Whoever wrote those laws was exceptionally forward-thinking.  Normally people love to put special-needs children into little categorical boxes and say, "You need this because you're this, and you don't need that because you're this."  Under the set of laws we have currently, it's illegal for schools to do that.  Instead, they are required to examine the child's specific needs, strengths, and weaknesses, and make a plan based on those things.  That's the "Individualized" in "Individualized Education Plan."

Naturally, no matter how well-written the law, there will be people trying to bend it this way and that to avoid expense, effort, and time.  Which is why this book makes a point of answering a lot of commonly asked questions, grouped into 14 different subjects.  Topics included in this book are: how to write a good IEP, who's included in the IEP team, what kinds of services can be included in an IEP, transition services, how to resolve disputes with the school, and even what things to do when you're transferring schools.

While this wasn't the most riveting book I've ever read, it did answer pretty much every question about IEPs that I've ever heard from a confused parent, and a lot more besides.  It even makes the point of telling you when laws may differ by the state, and prompts you to do research of your own.  There are also links to additional resources interspersed in the pages, such as a comprehensive list of all the services and accommodations you could ask for in an IEP, sample letters to a school regarding a particular issue, and checklists to photocopy and take with you to IEP meetings.

After reading this book, I kind of wonder what my IEP would have looked like, if I'd had one.  I didn't really struggle academically, save for a few subjects I really didn't like or care about.  But if the education includes appropriate development...  the IEP would probably have to have something about reducing my anger issues in middle school.  Maybe emotions recognition and management training?  I still find that somewhat challenging, but I think I'm improving.  And perhaps something to help with my chronic anxiety and depression.  I bet that last one would've been a headache and half, though, both for my parents trying to fight for it, and for me having to sit through it.  I'm also not sure I would have appreciated it, at the time.  I was pretty set on being left alone in middle school and high school.  Of course, perhaps having a therapist or someone I knew could be trusted to help me help myself might have changed that.  I have no idea.

Read This Book If

You're a parent of a special-needs child, or an advocate for one, and you're at any stage of your child's education.  Usually the books I review don't write this section themselves, but the authors clearly knew their audience was limited in this case.  They do mention that teachers and school officials might also find this book helpful, and I concur... but the questions they answer are almost invariably from the parents' point of view.  As guides go, this one is excellent: both comprehensive and concise, with enough resources to be helpful, but not so many as to be overwhelming.  

Legwork and Life, week of 5/16/18

This week was definitely another mix of good and bad.

The bad, mainly, was that I spent about three days in near-complete misery.   About once a month, I bitterly regret having two X chromosomes instead of an X and a Y chromosome.  This regret (and the suffering that sparks it) tends to last about a day.  Sometimes a day and a half.  In recent months, the amount of time has gone up.  I hadn't really noticed the pain ramping up alongside it, but...  then I was a grump for several days before my period started... and then in blinding pain once it started.

I'm generally not a "stay in bed" sort of person when it comes to being ill.  I prefer to be actively trying to mitigate my misery, keeping hydrated, eating good food, or at least getting some work done with activities to do while sick.  That was not an option for the very first day.  It was pretty much lie in bed or lie in bed.  Every movement hurt.

The only odd factor out in all of this was my dairy consumption.  I'd been eating more dairy in recent months due to stress.  But other than that, I seemed pretty much on track for having less awful periods. A friend of mine pointed out yesterday that dairy tends to include estrogen and growth hormones, because of the focus on milk production.  So maybe that's it.  I really hope that's it, because this really needs to not happen again.

The other major shoddy point this week happened Sunday morning, after most of the agony of my period had subsided.  I went to church, as I always do, but found the main church service too loud and painful to properly worship in.  My light and sound sensitivities were acting up.  When this happens, I self-accommodate by going to a side room where the service was piped in, but the volume could be adjusted, and the lights dimmed.  All was going well, until halfway through the sermon, one of the facility staff walked in and told me I should "consider vacating the room because others want to use it." 

I was confused, naturally.  Although I'd been tempted, in the past, to put up a sign saying "sensory-friendly church," I never had.  People wandered in and through the room with annoying frequency, and I didn't stop them or even say anything.  I just wanted to be allowed to worship.  When I mentioned all of that, the staff informed me that a nursing mother wanted to use the room, and didn't care to do so in my presence.  And then underlined that I should "consider others' needs." 

So, basically, I got politely chased out of my own church.  Or to be more precise, I left when it became clear that my reasons for being there weren't important to the staff, and there was nowhere else for me to go.  I spent the rest of the church service crying in the car while I composed an email to the staff who had wronged me. 

Their response came in at the tail end of the day, and could basically be summarized as, "This isn't my fault, so don't be mad at me."  I am, needless to say, exceedingly disappointed.  I let them know that I had just as much right to be using that room as anyone else, particularly considering the room's accommodations, and told them there would be no repeats of the day's events.  Which I hope they will understand as, "You and your guilt trip can bugger right off next time." 

I'm still fairly upset about the whole thing.  My spouse and I contribute financially to the church, and I volunteer my time and effort on a very regular basis to support the church's functioning.  I run the sound board once a month, and every week in the winter, I clear the snow off the solar panels.  I may not be listed as a member of the church, but I certainly do sufficient work to count as someone that should matter... and really, even if I didn't... I'm disabled, and Jesus loved the weakest among humanity (the poor, the exiles, and the children) most.  This particular church, which has a thriving set of programs to help refugees and immigrants, should do better than this.

I kept the original correspondence between myself and the staff member at fault simply between us, as I'd rather hoped they would recognize how immensely cruel and thoughtless they'd been if I explained my position.  So far, they've disappointed me.  I suppose if I'm still angry about it by next Sunday, I'll speak to the minister of congregational life about the matter.  

That was, thankfully, the last crappy thing that happened this week.  After I finished crying and sending the email to the thoughtless staff, my spouse and I went off to a special Mothers' Day brunch at a fancy restaurant.  The food was good, and we got to see my mother, my grandmother, and my dad.  I had to really strain to not let the storm of hurt and anger I was feeling ruin the brunch, but I think I did okay. 

After the brunch, there was a really unusual but fun outing.  A friend of mine had gotten ahold of some tickets to a symphony orchestra performance, specifically a performance of the music of John Williams.  This composer is best known for his work in Star Wars, Harry Potter, and Indiana Jones, but he's done tons of other things, also.  So the concert was various pieces he wrote, performed live by the local symphony orchestra.  Between getting to see my friend, the excellence of the music, and the excellence of the performers, I had a pretty good time.  I did have to resort to earplugs.  But after the morning I'd had, that was kind of inevitable. 

There's one more piece of good news to relate.  I can't remember if I've mentioned it on the blog, but my house came with a big bathtub, with jets.  I was initially very much looking forward to using this tub, because it's actually large enough for me to relax in.  When I tried it, though, I found out that our water heater is not spacious enough to actually fill the whole tub... and the end result is a lukewarm tub.  Not really suitable for a long bath.  Or even a short one.

After boiling some potatoes in our largest pot, I realized that I might be able to offset the problem.  I simply needed to use that same massive pot, boil a lot of water in it, and add that water to the tub.  On Monday, I tried just that.  It worked!  Actually, I majorly overdid it, and the water was too hot to be enjoyed, even after adding tons of cold water.  But that is a much more manageable problem than replacing the entire water heater.  So once I figure out the right balance for optimal water temperature, I should be good to enjoy hot baths whenever I want them!  I'm excited.

Reading the Research: We're Not Going Anywhere

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

Today's article shows the newest "current" rate of incidence of autism in children, along with the incidence rate in the last ten years or so.  I put "current" in quotation marks there because the data set they're using is from 2014... Apparently this is a common issue, since the very first analysis they have on record here uses data from 2000 and 2002, but was only analyzed and put into a report in 2007.

Y'know how it's been obnoxious and impossible to remember what the exact number was for how many neurotypical people to one autistic person?  It was 1 in 150, then 1 in 110, then 1 in 68, and all that?  And people were having hissy fits because the numbers kept rising?

Yeah, they're still rising.  We're now up to 1 in 59.  So in roughly any 60 children in the US, one of them will be autistic.  If they're all boys, you only need to line up 39 children before you'll find one with an autism diagnosis.  The female incidence rate is what's reining in the statistics, because apparently you need to line up 153 girls before you'll find one with an autism diagnosis.

Personally, I don't think we're as rare as the statistics think.  I think it's more likely that our diagnostic materials and professionals are geared towards diagnosing and treating boys, and until people make a better effort at learning how autism manifests in girls, this is how it will be.  But that's a grave disservice to people like me, everywhere.

Also wildly under-diagnosed, but apparently starting to even out in recent years: children of racial and ethnic minorities.  This is probably due to lacking the same resources and opportunities as their white counterparts, rather than any innate differences.  A report from the CDC states that minority children tend to be identified as autistic years later than their white peers.

A final note about all this:  these are statistics that specifically only track children.  Apparently little thought, still, is being given to those children when they grow up.  But time won't stop for us, and every child grows up.  In the meantime, more of us are apparently being born than ever.  Autistic people are here to stay.  Help us live in the world... but also teach your friends, family, and peers to accept us as we are.  We won't disappear in a few years, suddenly invisible because we grew up.  We live here, too.  And we're not going anywhere.  

A Week with Woebot

Roughly a year ago, a friend of mine linked me to a cool idea: an AI therapist that helps you track your mood and teaches you the basics of Cognitive Behavioral Therapy (CBT).  The name of the AI is Woebot.  At the time, it was only available on Facebook, and since Facebook kicked me out for refusing to give them my last name, it wasn't an option.  But I thought the idea had merit, so I signed up to be notified if they ever took their project to a regular app.

After some time had passed, they did in fact do just that.  So I gave it a try.  The app, simply called "Woebot," is available on both iOS and Android.  I installed it on my support tablet and booted it up.  

You're greeted by an animated robot (somewhat similar to Wall-E, honestly) as the app starts up.  This resolves to a smaller picture of the robot, and then there's a text box for typing your replies and what's basically an instant message conversation window above that.  I did have to make an account, which might be a turn off for anyone who lives with paranoid tendencies.  

From that interface, you chat with Woebot, whose personality vacillates between teenage girl (minus the attitude) and calm mid-20s college guy, with the knowledge of a CBT therapist.  The communication style of the AI is very much the younger generation's: text, interspersed liberally with emoticons.  I found that somewhat offputting, but at nearly 30 years old, I am definitely no longer "the youngest generation."  

So the first point of this app is to track your mood.  After greeting you and asking you what you're up to, this is the first thing it does each day.  You choose an emoticon to describe your mood, though you can eschew that and use words instead if you really want to.  

This is not my device, but this is basically what the check-in looks like 

I found myself miffed and confused by the bot's interpretation of the various emoticons, with the end result being that I'm now unsure if a particular emoticon is always meant to be "I feel lonely" or if the programmers just decided that.  They seem to have also ranked each emoticon on a scale of positive to negative... but the ranking system wasn't terribly apparent to me, so I wasn't really able to properly respond to the question.  

The AI remembers your moods each time you give them, and plots them on a chart for you as time goes by.  You can thusly track how you're feeling each day.  If you're me, you're always kind of grumpy or tired or whatever, so the chart is kind of boring to look at.  But other folks, especially ones that try the app longer, would likely have more interesting, helpful charts to look at.  

I imagine this would be helpful for people who feel depressed, but actually are doing fairly well most of the time.  But I'm a huge grump, so it didn't do a lot beyond validate my impression that I'm a huge grump. 

After the AI sympathizes with you or celebrates with you about your mood, it normally has something to tell you or teach you.  This is usually couched in conversational language, like telling jokes, or saying it in a, "guess what I heard recently?" kind of indirect way, as opposed to a "you might find this technique helpful" direct way.  While that does kind of enhance its appearance of humanity, I also found it kind of annoying.  But I'm a very direct, "just spit it out already" kind of person.  

I think all of that probably would have been fine, if it weren't for the last thing I didn't like about the AI's style of communication.  You see, while we have chatbots that can hold a pretty decent conversation, this is not one of them.  This AI appears to be intended to follow a script, and if you deviate from the script, it continues right along that script merrily, as if nothing had happened.  

When you talk with Woebot, you always have the option to enter your own response... but the app seems to prefer you simply click one of the preoffered responses.  If you type something different, it defaults to the first preoffered response it gave you.  Like the emoticon choice above, but usually only 1-3 responses... and those a great deal more cheerful and full of emoticons than I'd ever type myself.  As such, it becomes far too easy to just skim the AI's words and push pre-programmed responses without investing any real effort or interest into what it's trying to teach you.

As such, I was... really not impressed with this app.  It's a real pity, because the techniques it was trying to teach me are quite valid and important ones.  For instance, the AI started me out with mindfulness, and then got to working on recognizing and correcting cognitive distortions, keeping a gratitude journal, and setting good goals.  All of these are excellent basic therapeutic techniques, and fine ways to start a person on self-improvement.

I figured out pretty quickly that I mostly know the stuff it was trying to teach me, to the point where I was anticipating roughly what it would say next.  Which I guess tells me this app was not intended for someone with a psychology background...  Which is fair, since the world is a big place with many different kinds of backgrounds and knowledges, and most people don't have that particular background.

Actually, I'm not really sure if this app was meant to be used by adults.  The choice of communication style, emoticons, and personality choice suggest to me that this app was really more meant for use by teenagers, perhaps into college.  Since teenagers aren't the most self-aware type of human, and often can use counseling and help with coping skills, this isn't necessarily a bad choice... but it doesn't cater to me, personally, despite that I do have mental illness and could possibly use help with it.  

Anyway, bottom line is that I won't be keeping this app.  It's too bad, because the idea is fantastic: in an age where mental healthcare is prohibitively expensive, just teaching the basics via a free mechanism could potentially reduce the suffering of a lot of people, and thus improve the world.  

It could help teenagers (on and off the spectrum) as they struggle with who they are and who they want to be.  Teaching the basics of CBT and other good therapeutic techniques is great for increasing overall knowledge, and better educated people can help educate and support each other.  It could potentially help a patient autistic adult identify, deal with, and compartmentalize their emotions, which is definitely a good thing.  And the app does seem to have helped other people, by the views in the app stores.  But I guess I'm too old, too cynical, and too educated to really make use of it.  

Hopefully as the developers receive feedback (some of which is mine) and improve the AI, Woebot can become a more helpful, responsive, useful chatbot for people of all ages and backgrounds.  In the meantime, at least it's helping some people.  

Legwork and Life, week of 5/9/18

Last week wasn't as easy as I'd hoped it would be.   But gotta take the bad with the good, I guess.  And there was a decent amount of good. 

So Chris' birthday happened.  I tried to make it a good day for him, and we went out to eat.  Normally he'd've had to cook on that day, but he doesn't like cooking.  So the obvious solution was a meal out.  We ended up a Chinese place that's nearby.  They're a bit more pricey than usual, and their vegetarian offerings leave much to be desired, but it made him happy, and that's what matters. 

Other offerings in tribute of his birthday included ignoring chores this month (and that week), doing all the driving to various places, trying not to complain to him about things that day, and a trio of different-flavored fancy cupcakes instead of a birthday cake.  He seemed to enjoy the various things, so mission accomplished, I guess.  Some of my family also sent their best, and my parents and my grandmother both kindly took us out to eat in celebration of his birthday.  That was fun, as I liked the company and the food at both places.

The only trouble is that the present I got him was deemed "permanently lost" by the mail service, so the company that made it is having to resend it.  It now won't arrive 'til the middle of the month- about another week.  I think I might be more bummed out about it than he is.  It bothered me the entire day and still bothers me now.  I did the best I could, though, and that's all you can really do. 

Speaking of doing the best I could, the LGBT and the Church event went pretty well.  The head sound guy made setting up the microphones and such very easy, which was extremely thoughtful and gracious of him.  I still managed to stress through the entire event, though...  Go go gadget anxiety disorder. 

The event was a bit more on a hopeful note than I'd been expecting, which I think is probably a pointed philosophical choice on the organization's part.  While there are plenty of people in the CRC that could really use a good browbeating on the subject, most people won't sit through the browbeating happily.  Even if it's a badly needed educational browbeating. 

Anyway, the stories were all hopeful ones, at least in some ways.  Some of them were sad, along with the hope, but each of the kids is making the best of their lives.  I was particularly impressed by the last panelist, a remarkably energetic, optimistic girl named Sam.  I guess she was on NPR's Morning Edition, which she was really jazzed about. 

But I guess more importantly to me, she spoke about how her parents just... utterly rejected her identity ("queer" and bisexual), but rather than dwelling on how much that has to have hurt, she chose to speak about how much she loves them and admires them.  Without compromising her acceptance of herself and others like her.  She said, and I quote, "My parents are the best.  I love them so much."  She expressed that sentiment repeatedly, even as she related how both her parents are pastors, and firmly believe that she is doing the wrong thing with her life.  Sam regularly attends Bible study and supports other LGBTQ+ Christians in their faith. 

Personally?  I wonder how long her parents' dry theology will stand against their daughter's vivid,  devout Christian life. 

This branch of Christianity, the Christian Reformed Church, has a very bad habit of sticking its nose in the Bible and ignoring the people involved, and the world around it.  I have repeatedly compared them to the Pharisees in the Bible, and I think it's a very apt comparison.  They're so concerned with getting their theology right, that they ignore the very basics of God's charge to his followers:  love God, love your neighbor.  

Pointing to passages in the Bible and telling people that these things make them second class citizens, or somehow unworthy (or hell-bound, or whatever), is not at all loving your neighbor.  It is a most basic version of "us versus them," the shunning of the outsider.  It is not love to judge a person's merit on one facet of their personality, or insist they live stunted lives because of how God made them. 

But currently the blind lead the blind over there in the ruling body of this branch of the church, and I roll my eyes at all of them.  Hopefully the day will come soon when the bright light of truth pierces the darkness of their hostility and alienation, and the church will open its arms fully and honestly to the beautiful image-bearers of Christ who fall under the name "LGBTQ+."

Lastly this week, and very much closer to home, there was a minor power outage in my area on Monday.  I returned home after exercise and lunch, and began work on my various things (including starting a book I've literally stared at in dread for the better part of a month...).  I had the window open to let in fresh air, and suddenly there was a "POW" outside.  Immediately, my lamp flickered and died.  Nothing happened after that for about 20 minutes, after which I got annoyed, got my bike from the garage, and went for a ride outside. 

It was good exercise, but it also reminded me that I'm hilariously out of shape and that I should have invested in a more sedentary-friendly bike seat.  Also, my bike trail got cut short because of construction.  Boo.  Still, hopefully I'll be able to do this again, more successfully, in the future.  Preferably minus the power outage, which thankfully ended a couple hours after it began.

Reading the Research: Accepting Unfairness

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 stuck out at me for various reasons, not the least of which includes that I was bullied as a child.  But more because it made me chuckle sadly, I imagine.  They played a pair of trading games with children.  The games were one-on-one, a puppet and one child.  Some of the children were autistic, some weren't, and so they compared the results of the games.  While both autistic and NT children showed a willingness to share equally and didn't prioritize self-interest, the autistic children were three times as likely to accept unfair offers, and less likely to reciprocate (give as they got) a fair trade after one was offered.

The researchers suggested the differences were due to "deficits in social and cognitive development," and suggested improvements in anti-bullying programs and interventions, including teaching things like reciprocity and fairness of exchange pointedly.

While this isn't... exactly... a bad plan...  It kind of misses the obvious reason this is a thing.

I don't know how to put this tactfully, so: YOUR ENTIRE WORLD IS UNFAIR TO AUTISTIC PEOPLE. 

Seriously.  While everyone else gets to (mostly) be themselves, with minimal guidance, we're expected to change and change and change until we don't "look autistic."  No hand-flapping, no spinning, no repeating comforting phrases aloud, no being directly honest rather than misleading (because white lies are expected!), no giving your direct opinion on something instead of moderating your response based on what everyone else thinks...

Never mind the sensory and digestive issues, which most NT people don't recognize as legitimate, let alone accommodate for.  So bring your earplugs, your sunglasses, your support device, and your special diet foods, because you can darned well bet nobody's going to care that it's too loud, too bright, too hectic, and there's nothing for you to eat.  Fair?  Hell no. 

We are trained not to be ourselves, for the sake of everyone around us.   For the sake of seeming "normal."  Does that strike you as fair?  It certainly doesn't to me.  But we're told to accept it and "get with the program" already.  What we want doesn't matter.  That's ingrained into us.

And these adorably blind researchers have the gall to think it's because our brains don't always develop at the same rate as NT children.

No.  I'm sure that factor doesn't help.  But no, that isn't it.  It's that our entire world is already unfair. The study chose autistic people at an average range of 9 years old.  They're definitely old enough to know how this works.  Why should some weird game with stickers and a puppet be any different to them?  If every day you were subjected to systemic unfairness, you'd be more likely to not care about fairness in a few stickers in a weird game, too. 

Ultimately, the researchers' suggestions won't hurt.  Telling autistic people how reciprocity works, directly, is a good plan, and teaching how to recognize fair trades probably won't hurt, if they don't already know.  But honestly, if you really want bullying rates to go down... teach your freakin' kids that autism just makes some kids different, and that's okay.  When bullies come a'calling, some of  those children accustomed to autistic kids will say, "hey, no, not okay, they're just different and we like them that way."  End result: less bullying, and a less unfair world. 

Book Review: 50 More Ways to Soothe Yourself Without Food

50 More Ways to Soothe Yourself Without Food, by Susan Albers, PsyD, is a pretty self-explanatory set of 50 short essays, each with a different way to practice self-care without resorting to eating junk food.  It's the second of two books, the other being of nearly the same name, minus the "More."  The book begins with a 40 page section about the stress <--> eating cycle that the author so often sees in her clients, and then hops right into the essays.

The topical essays aren't disparate "try this!" ideas as I feared, they're organized by general subject.  So the broader subjects of mindfulness, meditation, yoga, expressive art therapy, and sensory therapies each have a collection of ideas within them. So there are, for example, several kinds of meditation you can try. 

I had no idea there were so many different kinds of meditation!  Chanting meditation, which is often parodied in media with robed, skinny monks sitting in funny postures, intoning "Ommmm..."  (You may chant something else, but apparently one ancient culture insists "Oum" is the word of creation.)  There's a kind of meditation where you try to empty your mind and still your thoughts.  There's meditation with prayer beads of some variety.  A mantra-based meditation, where you focus on a phrase and try to internalize it.  And a more recent arrival, self-compassion meditation.  I thought it was so cool that there were so many ways to do an ancient practice like meditation. 

I was amused to look through this book, especially the last couple sections, and recognize that some of these techniques the book is teaching you are stimming.  There's a type of rhythmic finger tapping they teach you how to do.  The roots of this are in a ancient China, but c'mon.  Tapping your fingers on yourself is obviously stimming.  Only, it's acceptable, because "Ancient Chinese meditative practice." 

Same goes for many of the sensory therapies, like aromatherapy.  Using something that smells nice to perk you up, or remind you of better times?  Please.  I hear that exact same strategy spoken about by other autistic adults.  They use it as a coping strategy to endure the trials of being neurodiverse in a world that doesn't want us around. 

I particularly got a kick out of the entry on soothing your senses, which included touching soft and smooth fabrics, darkening a room, and taking off any restrictive clothing (such as shoes).  Could this seriously be any more obvious? 

Naturally, the whole book wasn't a primer on "Things Autistic People Do To Cope," but so much of it was that I spent the latter half of the book being amused rather than learning anything. 

On a more personal note, I found this book instructive but it didn't personally describe my particular comfort food tendencies, which disheartened me considerably for the first half of the book.  The first 40 pages or so describe a particular eating <--> stress cycle that some people get locked into.  Basically, a person experiences stress, which makes them want comfort.  They then eat something, feel better temporarily, then feel worse and guilty about eating whatever it was.  This leads directly back to stress, and the whole thing repeats. 

That is not how food and I work.  The book makes much noise about the comfort and positive feelings of eating food only last a few seconds.  That may be true for some people, but it is not true for me.  As I was struggling through this book, I examined how I ate comfort foods and whether I did in fact only enjoy them for a short time.  And whether I then descended into guilt afterwards. 

The answer was no, I enjoyed them the entire time I was eating them, and did not descend into guilt afterwards.  My sources of stress are mainly not food related, and though I do indulge in comfort-eating, I'm pretty mindful about it.  If anything, this book, with its suggestion to eat mindfully, simply increased how much comfort and pleasure I derive from eating said comfort foods. 

Maybe this, like other aspects of my life, is simply a thing I process and deal with differently due to being autistic.  Or maybe I simply haven't had time to get into the complete cycle as described in the book.  Either way, I read the first section of the book with increasing frustration and annoyance. 

That said, the information in this book is neither invalid due to that, nor useless.  It's cheaper on the wallet to engage in meditation than it is to make pancakes or a mug cake, or to put on some music with your computer or phone, or even to drink a cup of tea.  And really, less effort to do any of those things rather than cook.  So yeah, this is still very good information.  I just had a hard time recognizing that as I read the book, due to the "this is you, isn't it!" tone in the first section, and its incorrectness. 

Read This Book If

You struggle with comfort eating, or even, like myself, use comfort eating as a stress management tool.  Autistic people, parents, special ed teachers, whoever: today's modern society has an excessive amount of stress, and the body can only handle so much of it before it starts performing sub-optimally.  It doesn't hurt to add other stress management tools to your toolbox, especially when some of them don't touch your wallet and some of them are so inexpensive they might as well be free.  There are ones that aren't (yoga or tai chi classes), but those are likely worth the price, too, if the effects are as they were described.  As for me, I didn't have high hopes for a book that's obviously the sequel to a previous book of the same name... so I'm now curious as to what ideas are in the first book.

Legwork and Life, week of 5/2/18

I seem to be starting the week well, which is good, because I could really use an easy week or two.   That isn't to say there won't be challenging things this week, but with a low-stress enough start to my week, I might be able to handle them a lot easier than I would've otherwise.

This week contains my spouse's birthday, for starters.  I have a couple things planned, but he's not really one for big celebrations with tons of people.  Unfortunately, to my great and abiding discomfort, the present I got him is late... and neither shipping company wants to claim responsibility, or even possession.  So that's frustrating.  He's a good sport and has said he doesn't mind too much, but in a similar situation I would be kind of annoyed, so... 

Another unusual event this week is that I'm running a sound board for an event that isn't a worship service at church.  And not just running the board... I might well be setting up the microphones and such, too.  I am... rather nervous thinking about it.  I've never actually set up microphones before.  I know how they turn on, and know somewhat how to set up the wireless ones.  But not really how to plug in and set up the microphone stands.  The event is important to me, though, so I'm not going to back out.

Specifically, the event is a panel regarding LGBTQ+ people and the church.  The ruling body of the major Protestant faction in this area, the Christian Reformed Church, has mostly leaned on the side of "ignore them and shun them and maybe they'll go away" rather than overtly telling gay people that they're going to go to hell.  Still, that's very damaging to children, and the friends of those children.  So this panel is a group of five LGBTQ+ teenagers, who will be sharing their experiences in the local church, and at the local Christian college.

People who've read this blog for a long time will already know I have Opinions about the subject of gay rights and how we tend to treat people.  I don't particularly expect to be all that happy after this event, but it's best to understand the current situation of things from people who live it.  Which I suppose I don't need to tell you, since you're reading this blog, presumably to understand autism and related issues. 

Lastly, related to the Legwork portion of this blog... I had an idea for solving my "what should I read and review next?" problem.  There are a couple publishing companies I'm aware of that publish books specifically related to autism.  And from what my author friends tell me, reviews are really hard to come by.  So, I might offer those publishing companies a deal: they send me copies of books, and I'll review them and post a bit of the review on Amazon.  I try to give every book I choose to review a fair chance, even if it's not terribly useful to someone like me.  So it could work out really well.  I might never again need to worry about where I'm going to find a book to review.

But first, I need to clean up my blog a bit.  My book reviews need to be tagged as such, and possibly given other tags, such as "for parents" or "for autistic people" or "for teachers."  I have about 400 blog entries, so this is a somewhat daunting task.  But hopefully I'll be able to work up the energy to tackle the job.