Disability in Slow Motion: An Essay and Response

http://brokenpen.net/aspielessons/disability-in-slow-motion/

I have a friend on the spectrum who also writes about his experiences with both autism and a sight-based disability.  His work is usually a mite shorter than mine, which makes for quicker reading and hopefully better comprehension.  Also unlike me, he has a pretty set negative opinion of the Christian church and its people.  We are somewhat more agreed on the terribleness of people in general, but as you'll see, I think it's more often incidental terribleness than actual targeted terribleness.  Onwards!

So, the first point about intelligence.  I actually have no idea what my friend's IQ scores look like, or what his scores would be in other measures (like EQ, or y'know, pretty much anything that doesn't measure book learning), but he strikes me as pretty smart.  I, personally, do have some scores to look at, and while I'm not at genius-level IQ, it's safe to say that as far as that metric goes, I'm well above average.  However, I definitely have a deficit when it comes to learning speed... so the smart phone quality comparison doesn't fit my specific situation.

I'm uncertain whether it fits on the whole, to be honest, because my mother, who was valedictorian in her high school class, and is not autistic, has this same issue.  Once we finish the learning process, we're very good at the thing we were learning and can then teach it effectively to others, but getting to that point can be a very slow, annoying process.  But let's assume the comparison does fit the situation overall (with some exceptions).

The next point is prejudice.  Innate prejudice is kind of an interesting subject, because as he points out, what you're prejudiced against changes with your level of education.  People with less education tend to discriminate more based on innate identity: skin tone, country of origin, male or female, and age, for examples.  Whereas people with more education (like, people that went to college, grad school, etc), tend to discriminate by chosen identity.  So, Democrat or Republican, liberal or conservative, pro-life (cough, pro-birth*) or pro-choice, and religious affiliation (or lack thereof).

*As pro-choice leaning person, I tend to note "pro-life"rs are often very happy to stop caring about the child as soon as it's born. Food stamps, the education system, healthcare over the lifespan, and the like are somehow unrelated and irrelevant to the life of a child, and don't need money or attention. Um. Somehow. Cough.

It's worth noting that neither set of prejudices is a good thing.  As a more educated person myself, I'm inclined to say it's better to discriminate based on a person's choices than on their uncontrollable life circumstances... but A) I'm obviously going to be biased, and B) Seriously, discrimination is bad.  Any discrimination.

Why is prejudice against people with disabilities different than prejudice against skin color/ethnicity?  Both things are innate identity, rather than chosen identity.  I'm not entirely sure.  If I had to guess, it's because of that age-old tendency to victim-blame.  In the Bible, people with physical disabilities were assumed to have sinned terribly, and their disabilities were heavenly punishment.  There's even a point in the Bible where Jesus is asked whether a man who was blind from birth had sinned, or whether his parents had sinned.  There's literally no third answer allowed in the societal context (though Jesus himself did in fact give a third answer).  Victim-blaming continues to this day, though it's generally less sanctioned in church than it was in those times.

So those two points of the introduction done, let's get into the popped balloon ideas!

• Innate worth

I agree with my friend in that being faced with a disabled person absolutely tests your belief in this, but not that the idea itself is a lie.  It's that, in my opinion, most people's definition of "worthy" includes perfect physical and mental health.  This is mostly unspoken in US culture, but it's literally everywhere.  Your supermodels, your TV stars, your celebrities, everyone pretends they're in perfect health (unless it's their thing to not be).

The dumbest thing about this idea is that most people won't meet the criteria for "perfect health" except for maybe a year or so around their college years.  Me?  I never have.  I've been autistic since before I was born, depressed since before middle school, and fighting an anxiety disorder since at least high school.  As I've aged, I've also discovered I have vitamin deficiencies, which led to achy knees, low energy, poorer sleep, etc.

• Freedom of expression

This is true, to a point.  The unsaid bit is "as long as it doesn't hurt anyone else."  Hair cuts, broken arms, and temporary-seeming changes are one thing, but being autistic, or being black, or having lupus are entirely different.  I would tend to argue that people can actually feel slightly hurt by having to handle interacting in a nonstandard fashion.  So, if they're not comfortable with talking to a racial minority, this causes them anxiety, which is a form of emotional pain.

Now, I am not saying this is somehow the racial minority's fault, because it definitely is not.  I am saying that because that anxiety ensues, people are less likely to be okay with, say, ethnic styles of dress and haircuts, or less neurotypical forms of communication.  These things are covered under freedom of expression, but they're not okay to some people, sometimes, because of that discomfort.

The solution to that, in my opinion, is to raise children in a very diverse environment, where they learn to communicate with all kinds of people, and that all kinds of people are pretty much just people, whether they're black, Hispanic, autistic, Downs, old, young, physically disabled, gay, trans, or whatever.  You can teach adults this too, it's just harder.

• Having kids

I've never quite gotten the "I wish you were never born" vibe from someone, but that might be a function of my disability being invisible, and the fact that I've gotten pretty decent at hiding it.  I've no idea if anyone's ever thought that sentence after interacting with me, but I hope not.  Either way, this is another facet of the insistence that everyone have "perfect health."

That said, "why would you bring anyone into this world if... <more suffering than joy> ...was what was waiting for them," is one of the reasons I likely won't ever have kids.  That, and the expense, and the fact that it's hard enough to manage my own life without adding a tiny defenseless human into it...

A thing my friend didn't note here:  some people with disabilities do want to have kids, and get some very strong negative reactions when they share that aspiration.  It's assumed that all disabled people will make poorer parents because of their disabilities, and further assumed that regardless of what kind of disability it is, they and their children should be aiming for that perfect health ideal.

• "Fixing" people with science

I feel like this point might be more in reference to my friend's visual disability and depression than the autism.  While parents do continue to clamor for a "cure for autism," one is neither forthcoming nor likely in the truest sense.  It's been 30 years, and what we've discovered is that autism is a trashbin diagnosis and there's no single cause, or even a set of 6 causes.  There's dozens to hundreds of factors that have to align, and which factors those are varies by the person.

The visual disability, on the other hand, is a little more cut and dried... but of course not all surgeries go well, and advanced techniques are discovered too late to help some people.  And depression is...  well.  There's the pharmaceudical merry-go-round, where you spend 3+ months on a pill to find out if it works for you, and whether the side effects are worth it... and if it doesn't work out, you try the next one and use another 3 months of your life.

Then, too, some people go through the whole set of pills for their particular situation, and find that literally none of them work.  This is currently called "untreatable depression" which is bullshit.  It's only "untreatable" because the current system only wants to prescribe pills, rather than try things like LENS/neurofeedback and transcranial magnetic stimulation, changes to diet and movement, treating other underlying causes of depression...

• God's healing

This is where my friend and I really diverge in opinions.  So, once again, there's a culture of idealized "perfect health."  And people with disabilities fly in the face of that.  We exist, therefore "perfect health" isn't an option everyone can pretend to have.

Personally?  I see the striving for perfect health as unGodly, an incursion of modern culture into religion.  God makes people in all sorts of different ways, with all kinds of different challenges, external and internal.  I've heard enough stories of people being blessed by learning to see through a disabled person's eyes, to know that God uses people of all kinds to accomplish his goals.  Sometimes, a goal can't be accomplished without a certain type of person, and a stereotypically "healthy" person is unsuited for it. Only with certain life experiences and circumstances might someone be suited for a particular job, and having a carefree life kind of lets you miss all that.

Thus, demanding that God magically fix a person, based on the stories of Jesus doing just that in the Bible, is not really a laudable Christian thing.  People like me, and like my friend, exist for a reason.  God does not promise any of us perfect health, piles of wealth, power, influence, happiness, and all the kids and grandkids we ever wanted, in this life.  That's our culture's ideals talking, not the Bible.

We're his servants, not his masters.  We're meant to do his work in the world, not have all our wants and needs personally attended to.  Heck, even alongside those stories of miraculous healing in the Bible, there was Moses with his poor speaking ability and Paul with his "thorn in my flesh."  (Also, Jacob was a coward, a thief, and a murderer, and Peter was extremely impulsive.) God didn't take those things away from either of them, but simply accommodated them where necessary.  They were effective, influential people despite those conditions.

I also disagree strongly with "a question mark is an enemy of most people of faith..."  I think faith goes hand in hand with question marks, and faith without doubt is only blind dogma.  Many of the Christians I know express doubt on occasion, over life circumstances, bad things happening to good people, world events, and theology.  Doubt comes with the faith, even for the best Christians.  It's very normal.  

Legwork and Life, week of 8/29/18

I think I'm going to start being more appreciative of the rain.  I still have no idea what kind of algae grows in the backyard pond, but a good hard rain utterly destroys it.  For comparison: 

August 3rd: moderate algae growth, but more than enough to make me foggy-brained

August 28th, post gloriously-battering rain, no algae in sight.  

Granted, with luck I may not have to worry about the problem much longer.  I attended the condominium board meeting this month, and brought the matter to their attention.  The people on the board do seem to like to be very social, but I was patient, and brought two pictures to show them.  The first was the moderate-growth picture above.  The second was a picture taken right at the water's edge, and I'm sorry to say I had to go inside and lie down for a while after taking that one... a fact that seemed to impress the board.  

Currently, it seems the pond does get chemical treatments against the algae, which I guess somehow hasn't killed off all the fish.  But some of the board members also accepted the idea of algae-eaters (snails, or fish), and the condo manager also suggested adding more fountains, or bigger fountains, to help agitate the water more.  So I'm not really sure what's going to happen, but at least they know, and understand how badly the algae messes me up.  It's somewhat convenient that I have that story to share, because people are a lot less impressed by, "well, I've been feeling foggy and anxious for months, and it gets worse when the algae is thriving..."  Human nature, what can you do?  

In other news, we adopted a new pet this week.  Or, I should say, "pet."  

This is a refurbished, older model Roomba.  Chris and I have always kind of wanted one (to the point that we put one on our wedding registry for kicks and giggles).  But they're expensive, so we hadn't taken the idea of getting one super-seriously until we found a really good deal for this one.  We named it Jeeves.  Or, I named it Jeeves, and when we turned it on, it proceeded to bump into basically everything, thus immediately making my name choice absurd.  I feel like anything named Jeeves should probably have a certain dignity and grace, and while this Roomba is plenty industrious and cleans very well, it is not graceful or dignified.

So, in preparation for having Jeeves in our home, we tidied up the upper level of our house.  Roombas are decent about working around obstacles, to a point, but for best results, they should only be navigating around furniture, not shoes, jackets, books, etc.  The carpet, to all appearances, was pretty clean.  Chris had been vacuuming previously, and while our canister vacuum isn't in great shape, it's at least still picking up dirt.

You'd think, then, that Jeeves wouldn't have had that much to do.  But lo and behold, after it ran the first circuit of the upstairs, there were dust bunnies packed into its filter and dust compartment.  I emptied it, proceeded to get foggy and anxious, realized it probably had algae pollen or whatever in it, and put the compartment back into Jeeves.  Then I ran Jeeves again, because why not?  And Jeeves came back with more dust bunnies.  I dunno exactly what the technology they put into Roombas to make them find that many dust bunnies in apparently clean carpet, but I'm impressed.  Also, it is now Chris' job to empty the filter and dust compartment.

We had similar results after we set it on the bedroom, too.  Actually, I went into the bedroom to watch it bumble around, and within half an hour, the "dustbin full" indicator had gone on.  I'm going to guess the previous owner probably didn't steam-clean the carpets before they sold the house to us, but still.  That was crazy to me.

I'm hoping to set Jeeves on the downstairs sometime this week, but that's going to be a bit more difficult to tidy up, and it also has more separate rooms.  So maybe it'll be a multi-part process.  Still, it cheers me to know I'm living in less dust and algae pollen.  

Reading the Research: Where Best to Learn Social Skills

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

Today's article is a step forward in social skills teaching.  It is traditional, as the article points out, to assume that people with the same diagnosis will learn best together.  Or in some cases, to not care at all and simply throw everyone together, heedless of whether learning will happen or not.  Some special education classrooms are like that.  

It may be better for the schools, because it's convenient, but it's not better for the students.  When you raise a child, you don't give them too easy of tasks, or they'll get bored.  Nor do you overwhelm them with too hard of tasks, because they'll get frustrated and give up.  You give them tasks appropriate to their ability.  Social skills, truly, are no different.  

Instead of simply chucking all the autistic students together, or all the special ed students, the social skill levels of each student should be assessed, and each student put into an group with roughly the same level of skill.  Peers will learn together, and even help teach each other.  It helps to see other people make similar mistakes to yours, as well as learn from your own mistakes.  Some inclusion-based classrooms do a limited version of this mutual learning by assigning a neurotypical student to the autistic student, but it's not as good as having a whole group to learn from each other.  

As I was reading about this, it occurred to me that the autism social group I sometimes attend already sort of does this.  There are three subgroups in this group: the teenagers, the young adults, and the older adults.  While they're technically age-separated, some people in the teens group will stay there longer rather than advancing to the young adult group because it's a better fit for them, socially.  Their social skills best match that age range, so they're most comfortable there.  

I never attended the teens group, but I did attend the young adults group for a time.  I met some pretty cool people, and had some pretty good times.  But as I got older, I started being more comfortable with the older adult group, and eventually opted to only visit the young adult group every once in a while.  Somewhat amusingly, I'm the youngest in the group by a decent margin, even though I'll be 30 this year.

Regardless, it'd probably do the whole world a good turn if we stopped assuming special needs are all the same, or even that autistic needs are all the same, and started getting more serious about having really diverse groups of people learning from each other.  The better we understand each other, the fewer misunderstandings ensue.  This is a two-way street, too.  While autistic people are expected to learn social skills so as not to upset neurotypical people, for a society to work, neurotypical people need to also accommodate us as well.  

Worth Your Read: Comorbidity

http://www.thinkingautismguide.com/2018/08/are-co-occurring-conditions-part-of.html

When a medical condition often accompanies another medical condition, this is called "comorbid."  Depression and anxiety tend to be comorbid with autism, for example, as I can well attest.

So it's interesting to see a scientific study work on quantifying all these conditions, and trying to find incidence rates.  I, like the article's author, found the incidence rates surprisingly low... but considering they're studying children under the age of 10, and only going by DSM criteria, perhaps I shouldn't be surprised.  Still, it's valuable information, and I'm glad they're making efforts to study it.

The definition of autism is still somewhat debatable.  In theory, medical professionals would have solved this a long time ago, but in practicality, decades have gone by and we have no answers.  In the meantime, autistic people have grown up, developed opinions, and theorized on our own.

In general, parents tend to categorize "everything abnormal about my child" as autism, and leave it at that, whereas autistic people tend to say, "okay, this stuff is autism, but my depression, my gut problems, and my epilepsy are not."

As a rule, I tend to agree more strongly with the autistic consensus.  The article goes into the why of that idea, a bit, and I strongly recommend paying extra attention to that part.

All in all, another excellent piece by Maxfield Sparrow.

Legwork and Life, week of 8/22/18

It was a really busy weekend, but a lot got done, at least.

Sleepwise, we swapped two doors in the house.  When we got the place, the master bedroom's door had this absurd "fancy" window in it, which was covered by pseudo-curtains.  This presumably was in fashion at... some point, but pragmatically speaking, the setup merely lets in light and makes the door extra heavy.  Since the presence of light makes me sleep more poorly, the door had to go.

So we swiped the downstairs bedroom door, and put that on the master bedroom's door frame.  And now the "fancy" door is on the guest bedroom, where it won't bother me nearly as much.  Chris also had the idea to lightproof the master bathroom door, which routinely lets in light in the mornings.  This was accomplished by weatherproofing it, actually...  Which is kind of weird, but as long as it works.

The bedroom is now so dark at night that even after I've woken up in the middle of the night, and my eyes are well adjusted to the dark, I literally can't see the bed or anything on the floor.  I just have to know roughly where they are based on memory.  This results in my groping around blindly in the dark while going to and from the bathroom.  But, I'm sleeping better, so I'll take that tradeoff.

Another home improvement that occurred was this:

We found this at a local furniture consignment store.  My spouse saw it, immediately flopped down on it, and declared it good.  We'd been looking for something exactly like this for months, but sectionals are both expensive and hard to come by in the secondhand market.  And darker ones, especially in neutral colors, tend to be even rarer beasts.  

So we bought it, and it basically completes our furniture downstairs.  We still need some kind of entertainment system, like a TV or a projector, for the corner, if we have to have a movie night or something.  But that should be distinctly less difficult to find.  There's actually a secondhand store that sells old computers and electronics, and they have a whole section that's literally just old projectors.  (They also have old TVs, natch.)  So we might look around in there and see what we find.  

Regardless, the progress cheered me up some, and I spent some time unpacking various media.  Books, DVDs, and video games all found their way to various points on the bookshelves we got a few months back.  The end result is that there are far fewer boxes downstairs, and even a few less upstairs as well.  The place still definitely doesn't count as "all unpacked," but it's much closer than it was.  

The extra clean floorspace is pleasant.  It's easier on the eyes to have uninterrupted carpet than boxes or scattered things here and there.  And it's also easier on my balance and mental energy, because I'm not having to navigate around and over those obstacles.  In addition, if things are put away logically, it's pleasant to be able to find things as I need them.   

I am not, I think, yet qualified to be a neat freak, and I probably never will be.  But it amuses me to think that my mother, 20 years ago, would probably be pleased with the kind of place I live in now.  Well, mostly pleased.  There's still boxes here and there.  But it's a lot more friendly of a place than my room was in those days.  I used to leave things all over the floor, such that you had to hop through "stepping stones" of empty floor in order to get anywhere.  

Ah, how times change.  

Reading the Research: Effective Teacher Training

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 highlights an effective training program for teaching teachers how to teach autistic students and manage a classroom more effectively.  Other than potentially agitating to have this introduced to lots of schools, I found this kind of interesting because it takes advantage of the hyper-availability of recording devices to help teachers recognize the changes in their classrooms. 

I also found it interesting because it shows that simply educating teachers is not enough.  The "control group" for this study was a group of schools in the same areas as the experimental schools, and the teachers there were given online training modules to help them learn how to work with autistic students.  These are people that, generally speaking, would tend more towards textual learning than most- because that's what the school system tends to teach with most.  And yet, while the teaching modules had an effect, it wasn't nearly as effective as adding video support and the other specifics of the SCERTS program. 

In investigating the program, I was extremely pleased to see that the program can be applied to both ends of the communication spectrum, as well as anywhere in the middle.  Nonverbal children can benefit from this program, as can highly verbal children (like I was).  A major worry I tend to find in parents I talk to is that their child doesn't really act like I do, or has a dissimilar communication history.  And although child-me didn't function as well as adult-me does, child-me was almost always able to communicate verbally.  So it's good to see the built-in idea that pictoral communication, sign language, and other, less accepted forms of communication are valid in this program. 

Lastly, I want to underline the second-to-last paragraph: general education teachers don't get a lot of things: fair pay, decent benefits, and sufficient mental and emotional support among them.  But they're still expected to handle a classroom of 20+ students, or more.  Sooner or later, at least one of those children will be autistic.  If we want to avoid repeating the mistakes of the past, good training programs are mandatory... and they benefit more than just the autistic students.  The whole classroom, and the teachers themselves, also benefit. 

Personally, I think most things are better with more diversity... but I might just be crazy.  

Worth Your Read: Suicide Risk Factors in Autistic Adults

https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4

If you don't have time to read the whole paper, the abstract (the topmost section) is a summary of the contents. 

A couple things to point out here.

First, I found the rate of "at risk for suicide" in the general population rather horrifying.  33%?  Seriously?  Naturally the autistic adult rate is much higher, at 72%, but if you've done the sort of reading I've done, you'll find that a lot more expected.  We have a ton of stressors, many of which are reported here in this summary.

But the fact that a whole third of the general population is at risk of suicide?  Gee, no wonder people can't treat us autistic people well.  Apparently, society is systemically failing all of us in the mental health department.  And really, with those kinds of numbers in the general population, of course a more stressed, prone-to-chronic-health-problems population is going to be at risk.

The second thing I wanted to point out was one particular risk factor: camouflaging.  For the unfamiliar, camouflaging is the word given when autistic people "act neurotypical."  Rather than balance ourselves and our needs with the demands of the society around us, we sometimes learn to pretend we're neurotypical so well, that it undercuts our mental and emotional wellbeing.  Acting like a person you aren't and can't be, for upwards of half your waking hours every day has deleterious effects on a person's psyche.  Surprise surprise?

At present, I maintain a balance between being myself and anticipating and meeting the demands of society.  As I've gotten older, I've found I have less and less patience for other peoples' pettiness and unthinking rejection of my inherent differences.  So I've started pushing back a bit.  Not rudely, but engaging in behaviors like "not meeting the eyes of people I'm upset with," for example.  Why should I have to waste energy and sanity on people who've hurt and angered me?  I don't feel I should, so I don't unless the situation demands it.  People that ask questions receive honest answers, but I'm no longer going to spend time agonizing over what the most socially appropriate course of action is.  I literally don't have the energy, and would rather spend what I do have on things I like doing. 

The other autistic-specific suicide risk traits mentioned, unmet support needs and non-suicidal self-injury, don't surprise me either.  If you aren't receiving the help you need to live your life, you're going to feel stuck, helpless, worthless, and neglected.  Having the help can be the difference between holding a job and wasting away in an institution.  Non-suicidal self-injury, on the other hand, tends to be related to frustration and anger.  Feeling stuck, helpless, worthless, and neglected can lead to frustration and anger, though, so you can kind of see how this whole cycle goes.

If this seems hard to understand, then let's pretend we have a guy named John.  John is not autistic, but he doesn't have the money for a car (and car insurance).  He does have a background in being a mechanic.  John lives in the country, where there are only a couple places he can work as a mechanic.  In order to earn a living, John needs transportation to apply for jobs at those places, and hopefully get one.  He will then need transportation to and from work, as well as regular grocery runs.

Is the right answer to tell John to simply earn the money for a car, and then he can have the applications and the job?  Because that's what society tells autistic people to do.  Succeed first, then get help as an afterthought.  We're told we don't deserve help until we don't need it, and if our circumstances are such that we'll always need the help, well... tough luck there, buddy. 

The right answer, by the way, is to get John help with his transportation needs, and eventually, perhaps, he can buy a car and car insurance.  However, if John simply can't drive for vision-related reasons or some other reason, the right answer is not to take away his transportation help when we find this out.  It's to find a long-term transportation solution- perhaps carpooling with his coworkers, for example.

Legwork and Life, week of 8/15/18

Thankfully, last week's poor mood mostly hasn't lasted.  The algae in the pond out back continues to regrow, such that it's basically choking out anything else in there... so that might have something to do with my still feeling kind of off.  My doctor has suggested upping my detoxifier dosage to 3 per day, spread out evenly, and maybe that's what I should be doing, at least while the algae continues to thrive.

At least I'm probably on an upswing.  On my doctor's advice, I'm cutting down on my hours of fasting.  I'll continue to stop eating at 8pm, because that helps cut down on my snacking, but my mornings will no longer be calorie-restricted.  Eating breakfast again seems to be helping my energy levels somewhat.  It also lets me get my supplements into my system much earlier, which results in better brain function for more of the day.

Snacking-wise, I haven't entirely stopped... but something's changed.  Instead of tending to crave sweet foods, I mostly just... don't.  I did still buy myself some salty snacks recently, but they don't seem to have the same effect that they did prior to this little experiment.  I'm still on the fence as to whether that's a good thing.  I mean, physical health-wise, it definitely is... lower sugar intake means better health, at least for someone like me.

It's just... mentally and emotionally, food was basically my only stable pleasure in life.  I like gaming, music, learning new things, putting patterns together to understand systems and people, rereading familiar stories, and helping people, but each and every one of those is a fickle pleasure.  Fickle, because they aren't predictable and I can't usually know whether something's going to make me feel comforted and happy or not.

Food cravings weren't fickle.  The particular food I was craving might change, but because of how well I remember flavors, and because of how the US food industry standardizes itself to offer the same flavor each time you consume a product, eating a particular food was always both predictable and pleasant.  For example, Kraft's macaroni and cheese.  It pretty much always tastes the same, assuming you use the same amount of butter, milk, etc.  Or a burger at a fast food chain.  These things are made to always taste the same, so you can develop a comfort with that taste, and then return to enjoy it over and over for years to come.

Now?  Now I don't really crave particular foods any more.  And I'm trying to stay away from sugary snacking, because I'm guessing the change is gut bacteria-related and if I eat too much sugar it'll revert and I'll be more unhealthy again.  Healthier, physically, yes.  Mentally and emotionally, I'm missing that stability of being able to open a box/bag of whatever and feel instantly more stable, comforted, and happy.

I didn't particularly predict this would happen when I started the intermittent fasting diet, but I did note signs of it as the weeks progressed.  For now, I'm going to wait it out and see if weight loss and/or improved overall mood results.  For all that eating sugary junk food did instantaneously comfort me, there's some compelling theories that suggest I'm better off overall without it.  The data is a bit muddled, but I did sometimes notice being in a worse mood or being more volatile a few hours after eating said junk foods.

The only other downside to this change in my food habits is that now I have less motivation to cook interesting things, because my overall interest in food is down.  This is kind of unfortunate, because I cook twice a week and it's hard to muster any enthusiasm to go to the grocery store when mostly what I get to do now is mentally mark off things as inedible.  I go down the aisles, commenting to myself, "sugar, sugar, dairy, sugar, sugar, nasty-tasting, sugar, nutritionally deficient, dairy, sugar, goes bad too fast for me to bother buying it, sugar, meat that isn't humane, sugar, sugar, sugar..."

I'm vaguely tempted to make a video of myself doing just that, perhaps at 3am when only the stockers are around to hear me record myself doing it.  It might be kind of educational for other people to see the various aisles of the grocery store quantified like that, but I'm not really sure I can make it entertaining, because the subject is so depressing to me.  I used to be able to walk into a grocery store and see so many interesting options for meals.  Now my selection has narrowed so immensely that it's kind of disappointing to walk through the rows of foods I mostly can't have.

Maybe I'll have my spouse start doing the grocery shopping when we shuffle the chores list...  

Reading the Research: Social Rewards

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 posits a reason why autistic people may sometimes be less social overall than neurotypical people.  Humans, as you may be aware, are tribal creatures.  Generally speaking, we're happier with some social interaction in our lives.  That's actually the point of small talk, I theorize: it's not really about the weather (or sports, or whatever), it's about feeling connected to other people. 

Well, so these particular brain scans, done at Stanford, suggest that part of the reason these types of social interaction are rewarding... doesn't apply as much to autistic people.  Inside the brain, there's a particular brain pathway that activates when the person engages in social situations.  This makes the interaction rewarding, even if the specific content of the interaction is neutral. Autistic brains, apparently, don't react the same ways as neurotypical brains... and don't light up as much. 

This suggests the inherent reward for being social is also somewhat muted... which might help explain why autistic people sometimes aren't as social naturally.  If you're a kid, and something isn't fun, you generally don't do it unless forced.  Your mileage may vary, but having met more autistic people as I got older, I've noticed a lot of us aren't really the social butterfly type.  I'd assumed that had more to do with environmental factors... after all, the vast majority of us were bullied, some rather mercilessly.  And it's not like the rest of life is super-easy, either.  Misunderstandings abound, even if you're fully verbal and "look normal." 

But maybe I shouldn't be surprised.  A lot of things in psychology end up being a mix of nature (like genetics) and nurture (like what kind of childhood you had). 

In my specific case, I think it's probably safe to say my brain doesn't reward me as much, if at all, for social interactions.  I often come away from small talk and other minor social interactions agonizing over what I said, and how it might be taken the exact wrong way.  It's a very unfun experience, and so I tend to not engage in small talk unless addressed thusly or unless it seems extremely awkward if I don't.  As a child, I tended to prefer a book to a person.  As an adult, I tend to "suffer through" social interaction rather than "enjoy" it.  It's gotten easier as I aged, probably because I've now had lots of practice.  It's still not what I'd consider a "fun" activity. 

Worth Your Read: Challenges and Competence

http://www.thinkingautismguide.com/2018/06/parents-do-not-infantilise-your-teenage.html

This is a fine article by itself, but I wanted to directly state an idea referenced here, but not defined outright: presuming competence.

A person may have developmental challenges, such as having limited executive/organizational functions, lacking speech or having very limited speech, or intellectual disability.  Or they may have a chronic illness, or a physical disability.  That does not make them somehow younger than their chronological age.  Even if some parts of their brain are slower to develop, such as emotional control, other parts may be at or exceeding their chronological age.

I'm an obvious example.  Chronologically, I'm going to be 30 this year.  Emotionally, I'm probably still in my early 20s, maybe even very late teens.  I have poorer emotional control, and have a harder time identifying what emotions I'm feeling, and why I'm feeling them.  Mentally, I get along very well with people 10-30 years my senior.  I often have, even when I was much younger than I am now.

Should people treat me like I'm 19 because that's how old I am emotionally?  Absolutely not.  People should treat me like I'm 30, because that's how old I am.  Should consideration and understanding be shown if I don't always act like I'm 30?  Of course.  But people don't get to mentally scale back my age just because a single facet of me does not line up with what's considered "adult."

I'm a really easy example, and because so many of my other facets seem "normal," it's unlikely that someone will speak to me like I'm a baby, or override my decisions due to assuming I'm incapable or unsuited to making them.  But that isn't the case for many autistic people.

Presuming competence is about assuming a person is an adult and can handle a situation unless it's clear they can't.  It's allowing a person to try, and giving support only when needed.  It's taking the person at their word, rather than ignoring them while you insist you know best.  It means allowing your teenagers and young adults to take risks (see: "dignity of risk" as mentioned in the article).  It's about treating a person like a person, rather than a perpetual child.

I hated being a child.  It upset me that, systemically, nobody cared what I thought, or what I wanted.  Even the most well-meaning of adults tuned me out when they didn't like what they heard.  Rarely was my input asked, and even more rarely heeded.  My parents were better about this than most, but I surely cannot say the same for many of my teachers. "Adults know best," was the catchphrase.

It's a remarkably thoughtless sentiment over all, and particularly so when it comes to autism and developmental disorders.  If you don't have a developmental disorder, you really don't know what it's like.  All the books in the world cannot tell you what it's like to have your brain twisted into knots and fed into a meat grinder when the sound of a fork in an industrial blender reaches your ears.  All you get to see me bursting into tears while everyone else simply pulls a face and covers their ears.

You can't convey, in mere text, what it's like to know beyond the shadow of a doubt, that you are irrevocably different and therefore broken.  That all the messages of "what's good" and "what's normal," will always, always exclude you.  You have to live with that the rest of your waking life.  Even if most of the people around you don't buy into those messages, autistic people can still be very aware of them, even on an unconscious level.

And yet, somehow, adults know best.  Except even when some of us grow up, we never get treated like adults.  Unless, systemically, we presume competence.  Even if a person can't hold a full time job, that doesn't mean they can't hold a part time job, or reliably do volunteer work.  Presume they can.

It was, in large part, because it was assumed that I could... that I did.  I got my driver's license, graduated high school, went to and graduated college, held several "normal" jobs, met and married my spouse, and bought a house and cars together.  My parents put their faith in me that I could do these things, if I wanted to.  Turns out I did... so I did.

Presume competence. 

Legwork and Life, week of 8/8/18

Do you ever have days where the whole day seems to get eaten up by one problem?  Like, things just keep happening to make that one thing unimaginably more complicated than it should have been, and you end up spending literal hours on it?  Meanwhile, all your regular daily stuff just... doesn't get done?  That was my yesterday.  I had period cramps and illness and a headache that lasted all day to boot, which you can just bet put me in a fine mood. 

In general I kind of feel like yesterday was a waste, but I guess that's not really accurate.  I did deal with the complicated problem, and handled a few smaller regular tasks...  it just kind of feels like because I missed most of yesterday's stuff, I failed at the entire day.  I'm going to objectively say that's neither fair nor reasonable, but it doesn't really change that it's how I feel emotionally.  Meh.  Seems I need more practice in being kind to myself. 

Chris didn't end up winning anything at the company raffle, so I'll have to spend actual money if I want to go kayaking this summer.  I do think it'd be fun, but I had a look on Craigslist and nobody's really giving them away.  You're spending $200 minimum for a kayak, and that's for the shoddiest inflatable ones.  So, I'll have to think on it some more. 

Other exercise-related thing, Pokemon GO is stressing me out.  When I play a game, I don't generally min-max, or try to play in the most excruciatingly efficiently ideal manner, but I do try to at least be somewhat effective about how I play.  My spouse min-maxes and such for fun, so I have his insights to apply to any games we play together.  Unfortunately, for Pokemon GO, min-maxing basically involves driving all over the place, spending hours playing, and juggling a lot of little niggling details.  Also coordinating with tons of people over the Internet.  Given how low energy I've been lately, that's a hard pill to swallow... and trying to do just a bit, rather than all of it or none of it, doesn't seem to be working.  So I don't know what to do. 

It doesn't help that the game itself is still really buggy and likes to crash on me a lot.  If I play more than a few minutes, I'll probably have to restart the app at least once, and that unfortunately involves entering all the login information each time.  And then changing all the settings back to what I want them as, because it forgets them each time as well.  My friend, who's been playing this without a break since it launched, has basically just given up on the game being any good.  Every time it messes up, she just says a variation of, "Well, Niantic (the creator company) is still terrible."  It's kind of a sad state of affairs.  She still plays because she walks for exercise, and so she just gets out the game then and basically doesn't play otherwise. 

I dunno.  I guess, overall, I'm just tired.  Low on energy, and feeling like I just keep getting lower.  Hopefully it's just something some sleep, good food, and some relaxation can fix...

Reading the Research: Lie Detection

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

Today's article talks about a rather important skill for everyone, but especially people with disabilities: lie detection.  Some people seem better at this skill than others, sometimes to the point of being uncannily good at it.  But others, autistic people especially, lack this skill altogether as part a broader-spectrum set of social deficits.  This is problematic, because the disabled population is many times more likely to be taken advantage of and abused than anyone else. 

To make matters worse, the "classic tells" of a liar, that is, avoiding eye contact, fidgeting, and overcomplicated stories...  don't apply to more practiced liars.  So the things media trains us to look for can steer us wrong, or even give us false positives.  Adding in visual processing difficulties, like I have, just makes this picture even worse.

Enter VERITAS (Veracity Education and Reactance Instruction through Technology and Applied Skills), a video game designed to teach people how to detect lies.  Developed by Professor Norah Dunbar at UC Santa Barbara, this software has been tested repeatedly on college students and law enforcement officers.  The college students' accuracy at lie detection tends to start at about 56% (so, just slightly better than flipping a coin), but after an hour playing this video game, their accuracy is up to 68%.  That may not seem like a huge amount, but it is statistically significant, and it's possible that with further practice on the game, the number might improve further.  Law enforcement saw similar gains, though their starting accuracy was at 62% and it improved, on average, to 78%.  That's pretty good for a single hour playing a video game. 

I was pleased to see the professor mention that there is no single thing that will tell you if the person's lying, and that it varies on the person.  A lot of people put great stock into eye contact, but if an autistic person can't or won't look at you, that doesn't mean they're lying to you or ignoring you.  So this stereotype often makes lots of trouble for autistic people.

The article itself has some behaviors to look for, if you want to sharpen your own lie-detection skills.  Personally, I'd just like a copy of this video game. 

Worth Your Read: "Challenging Behavior"

http://www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html

This post on aggression and self-injury is written by a medical doctor, not a person on the spectrum, but she is remarkably savvy on the subject.  Seriously, I'm impressed to bits with this article. 

Of particular note is the section on meltdowns versus tantrums.  These are two very different things, but I feel like they're the same thing to most parents, and most people observing those parents.  Briefly: tantrums are goal-oriented, meltdowns are not.  You can get results by ignoring a tantrum, but you can't with a meltdown.  The writer explains it much better in the article proper.

Another thing I wanted to highlight about this is that it rightly points out the absolutely dizzying number of reasons someone might have "challenging behavior."   A harried caregiver with a person that tends to have these behaviors can cease to look for reasons the person is acting out, and instead simply want the person to stop, in whatever way makes that possible.  Moving them to an institution, medicating them into submission, or trying to "train" them into not doing the behavior, is a very common, still accepted set of options.

Basically, as soon as the person doesn't verbalize their problems clearly and normally, we start edging toward treating them like they're subhuman.  But just because we consider speech hugely important, doesn't mean that people without it aren't sentient or can't express themselves in other ways. It just takes some detective work and patience.  And seriously, always assume the person is competent and can be communicated with. 

Please, give this article the careful read it deserves. 

Legwork and Life, week of 8/1/18

The extra family has left for home, and I'm about in the middle of recovering my energy, I think.  I'm trying to work ahead on the blog again, but it's slow progress thus far.

I had a chat with my doctor regarding the intermittent fasting diet, and she doesn't seem to think it's working for me, at least not in the way she was hoping.  So I'm thinking on whether I want to continue it.  I kind of do, because I think it really limits how much snacking I do, but on the other hand, it's kind of unpleasant in the morning when I'm lined up to exercise but don't have even a jogger's breakfast to draw on.

I'm also mulling over finding a place to jog.  I mentioned last week how very poorly I did when I jogged, and how it unnerved me, but the fact remains that it is definitely better exercise than biking.  Your heartrate actually stays elevated for a lot longer after you jog than after you bike or row or some other form of exercise.  This translates to more calorie-burning potential.  In addition, I think in general jogging uses more muscles than biking.  And I do kind of really want to play Pokemon GO while I exercise.  So, I don't know.  I probably won't do it, because I'm not sure how many revolutions I could run around the park near my house before I get seriously anxious about weirding out other people at the park, or thinking about what they must be thinking.  I'd run in completely abandoned places, but that's also a great way to never be heard from again, so... bleh.

On a happier note, I got to go kayaking last weekend!  A friend got a bunch of people together and secured permission to borrow his family's lake house, so we all visited on Sunday.  It was a nice place, big tall trees with a soft grass and mossy carpet near the house, a nice view of the ocean, and the house itself had running water and electricity and such.  There wasn't actually a whole lot of beach, because grasses like to grow in the sand dunes, and the grasses serve a purpose by keeping the sand from eroding away.  And there was a huge set of stairs going down from the house to the beach (but hey, that means the beach house won't get swept away anytime soon!).  We hung out at the beach area, ate watermelon and pizza, and chatted a bit. 

But yeah, they had a kayak, which I promptly took out on the lake.  This is one of the Great Lakes, not a little tiny thing you can see both shores of, so I didn't have much frame of reference for how far out I went.  But I made very sure to take note of where I'd come from, and conveniently, there were 2 white outdoor chairs on one side of the staircase, and 1 lavender one on the other side.  So that made it pretty easy to keep near the right piece of shore.  I had a pretty good time, too, because it's relatively quiet on the lake once you're far enough out.  And the paddling is good exercise.

I hadn't done that sort of thing for years, so I got tired fast, naturally.  But since nobody was yelling at me to keep rowing (like say, on a rowing team), I was easily able to take breaks.  It's somewhat similar to riding a bike in that way.  That kind of makes me want to get a kayak and go out to a smaller, nearer lake around here.  It'd be a bit of an endeavor to do that, so I'd probably only do that once a week.  Or maybe on Saturdays, as exercise day #6?  I dunno.  There's a very slim chance that Chris will win a kayak from his workplace's raffle, so if that happens, I guess I'll consider it more seriously.  If it doesn't happen, I guess I can think about putting one on my wish list.  My van will hold a kayak or two, probably.  It fit an 8 foot conference table, so it's probably safe enough.

My only concern will be my hands... I had to turn the kayak back earlier than I would have liked, because I developed a blister.  I recognized it pretty quickly, which I'm pleased about.  The first time I went out in a kayak, I managed to get like 5 blisters and tear a few open before I got tired, and those hurt a bunch for a good while.  So this time I was smarter, and I'm happy to say the silly thing is entirely healed up now.  I did also manage to bruise both thumbs, but the solution to both bruises and blisters is very simple: gloves.  I have nice fingerless gloves somewhere, which I used to use in my rowing team days.  They'd work just as well for this.

The last bonus for doing kayaking regularly is the muscle groups it exercises.  Most of my exercise focuses on my leg muscles, and pretty much just those.  Kayaking is mostly arms, shoulders, and some back muscles.  I have a pretty strong back, but historically I've been rather poor about exercising my shoulders and arms.  So this would be a good development, if it works out.