Monday, October 30, 2017

Reading the Research: Disasters and Depression

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

Today's article discusses how disasters affect people with depression differently than others.  This study is an example of how science sometimes has to improvise when the unexpected happens.  It's not explained what the original study was aimed at, but after their data group's city suffered a refinery explosion (which killed 15 people and injured 170 people), they opted to change their focus to measure how much the disaster had changed the participants' data.  Effectively, the researchers were able to take "before and after pictures" with two tests and a blood sample.

While the apparently healthy people bounced back in this study without major changes, people who had even minor depressive symptoms (such as feelings of fatigue or sadness) and expressed concern for their physical health did not.  When their blood samples were tested, they showed a 75% increase of immune markers that signal inflammation in the body.  So, most likely, those concerned and slightly-to-very depressed people were experiencing lots of inflammation in their bodies.

That may not mean a whole lot to you.  It wouldn't have to me, a few months ago.  But it's a bad thing.  Basically, if your entire system is inflamed, it's like your white blood cells think you've got the flu, all the time.  Part of why you feel tired when you have the flu is because of your immune system, which is fighting an all-out battle to kill off the flu germs.  The same basic thing happens here, sans that your body isn't fighting anything, it's just mobilized and marching around, messing things up, without anything to actually fight.  Whole body inflammation can also signal an autoimmune disease, where the immune system starts fighting the healthy body.

On a more personal note, apparently simply being highly stressed is enough to cause whole body inflammation.  Prior to heading off to CT for the first time this month, my doctor commented that I looked "puffy" and inflamed.  She didn't seem overly surprised, since she knew some of the major stressors I was dealing with.  But she did more or less tell me that it'd be best to reduce the stresses in my life so the inflammation would go down.

So basically, this study tells us that people who are vulnerable to stress and depression get hit harder and longer by disasters.  Given how many autistic people also suffer depression, it's important to keep this in mind given the various hurricanes and other natural disasters.  Then, too, there's the scale of this study.  The disaster they studied here was relatively small: one city, less than 200 people immediately killed or injured.  Hurricanes, earthquakes, and other natural disasters tend to affect many more people, and destroy many more buildings.  Likely the effects shown here in this study would be amplified the larger the disaster.

My final comment is that while society has a definition of a "disaster," that definition may vary based on who you are.  An autistic child who doesn't blend well in school or society might classify moving to a new house as a disaster, if they could understand the concept and communicate back that information.  So you might see these same inflammation effects from something as simple as moving across town, and even moreso if the move is cross-state.  That doesn't mean families shouldn't move, but great care and understanding should be given if the autistic person reacts badly, adjusts poorly, or treats the event like the end of the world... because it might well be, for them. 

Friday, October 27, 2017

Trying Huel: An Experiment in Occasional Meal Replacement

Nutrition is hard.  Eating well is hard.  And I'm a low energy person who doesn't like cooking.  What's a health-conscientious autistic adult to do?  

Well, science is starting to offer very low-effort solutions to the problem.   After decades of research, we're starting to get a handle on exactly which nutrients, and how much, the average person needs in a day.  So then the challenge is simply to provide those nutrients in a simple to use form.  Enter Huel, and its main competitor in the US, Soylent.  These are both complete meal replacement powders, which is to say, instead of making a nutritious meal with lots of fruits, vegetables, and healthy grains and proteins, you can have a serving of this powder and receive relatively similar health benefits.  At least in theory.  Basically, you can "skip" a meal and just drink a serving of the powder.  It's meant to be both a convenience food, and at least in Huel's case, a possible cure for world hunger.

I opted to try Huel rather than Soylent for a few reasons.  First and foremost, I ran the ingredients of both products by my doctor, who has a PhD in Nutrition and works with special needs people mainly.  She frowned over them both, but told me the Huel had the better nutritional profile.  She also commented that it'd be better to avoid soy as a rule, as it's a common allergen and I have a sensitive system.  Also, as a rule, since Huel originated in the UK, its formula has to meet the much stricter and more rigid health standards of Europe.  That means far fewer colors, weird additives, etc. 

The last thing my doctor commented on was the sweetener additive.  Both Soylent and the sweetened version of Huel use sucralose, which is a neurotoxin.  It's over a hundred times sweeter than cane sugar, which throws off the brain's understanding of sweetness for natural foods.  Huel, however, also offers an unsweetened/unflavored variety, which contains no sucralose.  Since it's easy enough to add sweeteners on my end (my kitchen alone has sugar, honey, cocoa powder, monk fruit sweetener, stevia, and erithrytol), that seemed like the better bet.

It also doesn't hurt that my very first friend, a Britishman, tried it before me and informed me that it works pretty well.  (As a sidenote, there is also a gluten-free version of Huel, which is an important thing to note for some people on the spectrum as well as anyone with Celiac disease.)

It's a bit pricey to try either Huel or Soylent, as they like to send you a big bag or two.  (Huel is $66 for 28 meals, which comes out to about $2.36 per meal.)  Fortunately, that's what budgeting is for!  I had the money together a few months after consulting with my doctor about the idea. 

Pictured: the starter kit.  Two bags of powder, one portioning scoop, and one "shaker" (basically a water bottle meant to be shaken to help break up powder chunks)
So this was what came after I ordered it.  I was actually a derp and accidentally ordered one bag of the sweetened variety instead of having both be the unsweetened, so I'm contending with the sucralose.

The powder itself is relatively fine, and very oaty-smelling.  The basic serving directions are to mix five parts water with one part Huel, so you get a decent amount of water along with your calories, particularly since an entire "meal" serving is three of those scoops, or 1 cup.  You can also bake the powder into things like pancakes, cookies, etc.  Their website has a number of recipes for that.

I've mostly been having it straight, just mixed into water as per the recommendation.  At least for the vanilla stuff, the flavor is basically like oatmeal.  I can vaguely taste the vanilla and the sweetener, but the strongest flavor is simply its first ingredient: oats.  I'm basically fine with that, though cocoa powder or other flavors from my kitchen might be in order in the future.

These powders are built with the idea that you could potentially replace all your meals, for weeks or months at a time, with them.  I have not tried that, though some people have, and there are articles written on their experiences.  I've been leery of that.  While I have replaced an entire meal or two, with decent enough results, I prefer to combine a snack-sized serving (1/3 or 2/3s of a meal) with a serving of solid food.  Today's breakfast, which I'm eating right now, is an apple and a single scoop of Huel (1/3 of a meal) mixed with water.  Even before I started using Huel, I'd been having trouble figuring out how many calories makes for a decent breakfast and lunch.  I don't seem to need a lot of food in a meal sometimes, which is confusing because I'm 5'8", heavy-boned, and weigh over 200 pounds.

With luck, I can try to get that confusion straightened out.  Huel is nice in that you don't really have to count calories, just portions.  So if I wanted, I could try the "whole week of just Huel" thing that some articles talk about, and see how much I seem to need in a day.  I'm wary of doing so, though, because I like the various textures and flavors of solid food.  My mother raised me on a relatively varied diet, so it's difficult to commit to ditching all of that, even for a single week.  The experience would probably be very educational, though...

If I end up doing that, I'll write a "I tried meal replacement for a week, this is how it went" article of my own. I'm not raring to go on it, though, because of the very last thing my doctor mentioned regarding meal replacement...

You see, humans are designed to eat solid food.  Digestion starts with chewing, and we're encouraged by health professionals to eat a varied diet because we don't know everything about nutrition.  So, in hospitals, you can keep people alive by feeding them via tube.  That's been doable for quite awhile, and hospitals even have nutritionists on staff who can calculate how many calories a person needs, and specific nutritional needs that correspond with what conditions the person has.  The thing is, people fed that way don't really thrive.  They survive, definitely.  But they don't thrive.  They look sickly, have low energy, and overall just don't do well.

So things like this meal replacement powder, meant to replace all your meals (in theory) should be used with care.  Particularly for people whose systems are very sensitive anyway, like people on the autism spectrum, or who have a lot of food allergies.  This is very much an experimental technology as of yet.  We don't have large scale studies on what happens if you stop eating solid food for a month using Huel or other meal-replacement substances.  So while it would be amazing to just jump right in and swap over to meal replacement substances, especially in food deserts and low-income areas, it's wise to be cautious.

But it is kind of awesome to just stir some powder into a glass of water and have lunch without getting slowed down by food prep. 

Wednesday, October 25, 2017

Legwork and Life, week of 10/25/17

 I didn't manage to explode from glee this week, but the wedding went really well.  The grooms were adorable, the food was tasty, the table we were placed at was full of reasonably interesting people.  I wore my wedding dress with the fancy tiny jacket my friend made to match it, which made it both different and more appropriate to the fall weather.  I was amused to find out that my dress matched one of the groom's colors.  I love blue, and it turned out that the grooms' colors were forest green and sapphire blue, and my dress went well with that.  It also went well with my hair, which thoroughly entertains me also.

This was my dinner: ratatouille served in a hollowed out pumpkin.

The centerpieces were all like this, and the internal light could rotate through the colors of the rainbow.  They started blue and green, of course.
I didn't smile or grin for the entire wedding, but it was easily at least half the wedding, so we can safely round up.  Particularly if the grooms were being adorable and loving.  It really makes me happy to see them so happy, when the world around us is so very not.  And the odds are so low for two gay guys to find love with so many loving, supportive family and friends, you can't help but be so glad when people beat the odds. 

In other news, my birthday is sneaking up on me.  I'm going to be 29.  I'm a little sulky about leaving my 20s behind soon.  I didn't hate being in my 20s, mostly.  Now instead of being a young adult I'm heading toward just "being an adult" and I don't feel all that adult-ish.  I don't feel like a teenager, I guess, or like any particular age group.  But it's annoying to know my body is going to only get more persnickety and less forgiving as time goes by.

Hopefully it's just this house getting to me.  We're visiting Chris' parents at present, after a stint with Chris' older brother.  We've seen some lovely places, like a little chocolate shop and milk farm in the country, an upscale bread store, a boardwalk over a swamp area, an aquarium (with beluga whales!), and a science museum.  I've been taking something to help my body metabolize the mold, or whatever it is in this house that makes me crabbity, depressed, and anxious, but I swear it wears off by the evening.  That still gives me most of the day to be pleasant to be around, which is much better than being a grump 24/7.  Still, it makes my evenings kind of unpleasant.

It's been a busy trip, but basically a good one overall.  Still have a few more visits this week to take care of.  Friends later today, an aunt and uncle tomorrow, and then on Friday we'll drive partway back to Michigan.  Saturday we'll see more friends, and then return home, where I can hopefully get the last of the mold from my system and get 30 hours of sleep in my own bed.

And maybe work on my buffer, again.  My backlog of Friday entries and Reading the Researches is all but gone again.  It definitely served its purpose well, but I'd be happier if I had some cushion about my upcoming week.  Ah well...  at least I'm not having to flail and panic during my trip. 

Monday, October 23, 2017

Reading the Research: State Autism Coverage

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 relates to insurance coverage and how much care autistic people, especially children, receive. As of this article, the researchers state that 46 of the 50 states have passed some kind of law requiring private insurers to cover at least some therapy for autism.  Their question was then whether that actually had an effect.

The answer, unsurprisingly, is yes.  Autistic families in states with coverage spent more money, and used it for outpatient treatments (various types of therapy) rather than hospitalizations.  Also, the longer the mandate for autism coverage had been in effect in a state, the more ASD-specific the care was likely to be, meaning these mandates spur the growth of businesses as well as boosting spending.

It's important to note here that not all states are equal in coverage.  Some states only mandate coverage for a small section of childhood, usually to age six or so.  This is due to the prevailing theory of Applied Behavioral Analysis (ABA), which suggests that this is the critical age range to target when trying to improve "functioning."  Others states recognize autism as a lifelong condition, and one requiring support throughout childhood, and cover much larger age ranges.

I found this an interesting read, and at least slightly promising.  My own state, Michigan, has a system I can only describe as "messy" when it comes to private insurances.  There was some sort of fund established by the state for re-imbursing private insurances for autism coverage, which the website says is depleted and won't be renewed.  From what I've heard from the parents I speak to, I would guess that autism coverage is either not mandated for private insurances, or not mandated save that very short age range.

Generally, when it comes to advising parents on how to get services, my thoughts go to one strong parent-advocate at the parent-support group I attend.  The man would probably never actually create a song and dance for it, but it's such a well-rehearsed subject that it might as well be: Medicaid is the golden ticket to all the supports and therapies for autism.  Once on Medicaid, you can apply through your local Community of Mental Health (CMH) for services appropriate to your child or yourself.

This is not really ideal for a lot of reasons, not the least of which is the standard assets cap.  Medicaid requires you to be dirt-poor, not just permanently disabled, to benefit from their services.  There are workarounds for that, which include the newly established ABLE accounts.  These let you save money to be used for specific expenses, and the money saved therein is ignored by Medicaid when assessing your assets.  There are also various "this disabled person would like to work and earn actual money beyond Medicaid's limits" programs, one of which is called Ticket to Work.

It's not an unworkable system, as evidenced by the various successful parent-advocates that use it.  But it is complicated in the extreme, and Medicaid is an unpredictable, ever-changing, bureaucratic, unholy nightmare for anyone not very experienced in its twists and turns.  I would much rather parents be able to simply use their work insurances to cover their children's needs... you know, like insurance is supposed to do... regardless of what those needs are.  So it's good to see a study like this, which seems to indicate that mandating such coverage has positive effects for everyone involved.  (The autistic kids get therapy, the parents get help understanding and working with their kids, the state economy grows due to new businesses, and the insurance companies get more business.)

Friday, October 20, 2017

RIP Dairy

It finally happened.  I finally got sufficient amounts of proof that I can't ignore it any more.  I am dairy-sensitive.  (This is different than lactose-intolerant, which is my spouse's problem and involves digestive issues rather than neurological issues.)

Intro/What is this Madness?

Ever since my LENS doctor suggested looking into the gluten free, casein (dairy) free diet, I've been kind of poking at the idea.  Some of the side symptoms of autism, you see, can be made worse by ingesting food dyes, excessive amounts of sugar, gluten, and dairy.  Several of the "my family's experience raising an autistic kid" books talk about improvements made using gluten-free casein-free (GFCF) diets.  It's not that changing the kid's diet "cured their autism" or anything like that.  It was the side effects that improved: anxiety, depression, inattentiveness, sensory issues, cognition speed, etc.  (To some parents, that is autism improving. But that's an entirely different debate.)

Gluten takes a long time to get out of one's system, so I've shelved that as a possibility for if I ever get ambitious.  But dairy is a lot faster.  Dairy can be out of your system in a week or less.  My doctor suggested two weeks, at least, to abstain from consuming any form of dairy.  I tried that, but not scientifically.  I didn't abstain entirely, I just eliminated most types of dairy from my diet, and kept tabs on my mood and such after consuming dairy products.

I'd been noticing a downswing in my mood after eating foods that contain dairy.  I'd figured that was the sugar's fault.  I am very fond of ice cream, but of course ice cream is almost invariably sweetened with sugar or with high fructose corn syrup (HFCS).  And sugar tends to mess with anyone, especially in large amounts.  Given that I already knew my system was sensitive, I tried not to overdo it... and perhaps that's why I'm only figuring this out for sure now.

The Stumbling Blocks

I'd actually cut milk out of my diet awhile ago, preferring almond milk for its longevity in the fridge.  Slightly different taste, but it lasts three times as long?  Never have to taste sour (or souring) milk, and throw out half a container again?  Yes please!

Cheese is harder.  I definitely no longer buy much cheese, but shredded cheese still goes in some foods that we make at home, and comes on a lot of things in restaurants.  We're Americans, most Americans have the European mutation that allows digestion of lactose (milk protein) long beyond the nursing years.  I grew up eating cheese.  I like cheese on my burgers, and I can recognize the individual tastes of swiss, colby, cheddar, muenster, mozzarella, gouda, havarti, and provolone.  If you hand me a cheese platter and some crackers, I will enjoy myself.  At least until later, when apparently all the dairy decides that I have had quite enough fun and it is time to suffer.

Ice cream is mainly my last issue with going dairy-free.  I haven't been impressed with any non-dairy ice creams I've tried, and they're expensive to boot.  Instead, I got pickier about my ice cream.  I stopped buying regular grocery store ice creams, and started only buying Ben and Jerry's.  The stuff is expensive, but it goes on sale every so often, it's Fair Trade, and the Ben and Jerry of the company are highly respectable, moral people for having so much money and a successful business.  They got themselves arrested last year while protesting all the private money in politics in Washington DC.  Also, their ice cream is basically the best stuff on the market.  I kind of couldn't feel bad about only buying their stuff.

The Tipping Point/"Oh, Duh" Moment

I had been having a pretty average day, at least for this part of my life.  Wasn't in a bad mood, wasn't in a good mood, was just kind of "eh, it's fine."  We had cow milk in the fridge, for the first time in a good while.  It's not that I hate milk, is that it goes bad too fast.  But we needed it specifically for a recipe, so I got a quart of it.  That wasn't much, we could probably go through it, I figured.  He used his bit for the recipe, which left more than half the container... so this afternoon, I made myself some mac'n'cheese, and used some of the cow milk.  And before that, I drank a bit to make sure it was still good.

It tasted fine, and wasn't souring.  But an hour later, I was in a foul mood, my limbs felt weak and shaky, and my stomach seemed upset.  Not "you're going to hurl, get to the bathroom now" upset, but definitely unpleased with me.  I had been ignoring the symptoms as they came on, reading a book for my next Friday entry, until suddenly I noticed it all at once.  And recognized, of course, that this was highly abnormal for the situation.  

You see, I had no stressful events coming up for the rest of the day.  I'd done everything that was on my plate and was working ahead, which tends to put me in a more satisfied state.  The book I was reading was interesting, even slightly pleasant.  Yet somehow I was now angry, sick, and shakily-weak.   

So I began looking backward, comparing the sensations to previous sensations I'd had after eating cheese and ice cream... and it seemed about right.  I suspect milk produces the strongest reaction, being relatively unprocessed.  But cheese and ice cream both had also set me off in a similar way, muted perhaps by the other ingredients they'd been mixed with.  

More or less, I accidentally did what's called a food challenge in allergy testing.  You eliminate the questionable food from your diet for a couple weeks, then give a moderate dosage and record the results.  If you don't see anything different, that food is probably safe for you.  If you do have a reaction, physiological or neurological, you then know that food is not your friend.  

This type of dietary experimentation has been covered in at least three of the books I've reviewed, but I suppose I was never willing to commit to not eating cheese and ice cream, purposefully, long enough to actually do it.  Hence it happening on accident instead.  

Well Crap, Now What?

Well...  I can definitely stop buying cheese.  I'm not sure I can stop consuming cheese entirely.  Right now, there's a whole batch of freezer burritos in the freezer that I am flatly unwilling to chuck out simply because they contain shredded cheese.  I can, I suppose, use up the last of the cheese slices in my refrigerator on bison burgers today and then commit to not buying more.  

I'm going to need to think up something to put on sandwiches instead of cheese, though.  Apparently my generation likes avocados a lot, on everything, but I never really got into that.  I guess maybe pesto?  Except that has cheese in it too.  Not a lot, though, and maybe I can just find a recipe that's just almonds, olive oil, basil, lemon zest, and... I guess just skip the grated parmesan or romano cheese...  Or maybe there's some kind of alternative.  I'll need to do more research.

I don't know what to do about the fancy cheese shop in town, though.  Their staffpeople are very sweet and let you try a lot of different samples to get a sense for the various kinds of cheese.  Do you know how many kinds of cheese they have?  It's over 100 different kinds.  That includes my favorite cheese in existence right now, a sharp cheddar with protein crystals and an utterly delicious taste.  It is basically the best on crackers.  And sandwiches.  And... basically anywhere you put it.  I don't go to that shop often, but it's definitely going to be asking a lot to simply... give up all the dizzying varieties of cheese they have.

Maybe I won't have to, entirely.  They have goat cheese, which I've always thought was very strong-flavored and gross.  But they also have sheep cheese, which might not have casein in it.  I'll have to check with my doctor.  Or do another, more purposeful food challenge, I guess. 

Happily, it seems like I can still capitalize on the ice cream snobbery I cultivated over the last year.  I did a bit of research for this post, and it seems Ben and Jerry's has developed almond milk ice cream.  I don't think I've seen it in my local grocery store, but perhaps I simply haven't looked hard enough.  I still shouldn't be eating tons of it, since I need to lose weight and I somehow doubt this stuff will be calorie-free as well as dairy-free.  But it's at least promising.  And it's vegan, which is kind of amazing.  I have no doubts it will still be good ice cream, though.  It's Ben and Jerry's.  I literally can't imagine them marketing a bad product. 


The question about gluten still remains, of course.  Gluten and casein apparently have very similar structures, which means the body can sometimes treat them the same.  Especially overly sensitive systems like mine.  I think I'm still going to shelve the question for a few months, at least.  Gluten not only can take months to get out of your system, it's in so so so much stuff.  I recognize that bread isn't the only food in the world, but I actually don't love rice that much, quinoa is expensive, and a lot of the "ancient grain" products are just mixed right in with more gluten-containing grains.

Also, my father may have nicknamed me "The Bread Girl" growing up because I like bread so much...  

Basically, it's a can of worms I am super not interested in opening up right now.  Trying to make sure I go dairy-free is going to be hard enough.  I think it'll do me good, and it will definitely do Chris good, since his intestines rebel when he eats dairy products (he has a big box of lactase supplements for when he has to eat cheese and other dairy products).  

I'm just... starting to get to the point in the grocery store where I end up looking past entire aisles of food, whole sections dismissed as "irrelevant and/or blatantly harmful."  And having all those possibilities was one of the things I really liked about grocery shopping.  Now almost everything is calculated risks, off limits, or "use sparingly."  I have so few pleasures in life, it's really hard to see this happening more and more.  If gluten turns out to aggravate my system too, it's going to be even worse.  I don't think I can handle that right now.

Wednesday, October 18, 2017

Legwork and Life, week of 10/18/17

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

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

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

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

Monday, October 16, 2017

Reading the Research: Resilience

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

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

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

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

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

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

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

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

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

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

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

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

Friday, October 13, 2017

Book Review: Level Up Your Social Life

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

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

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

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

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

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

Read This Book If

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

Wednesday, October 11, 2017

Legwork and Life, week of 10/11/17

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

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

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

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

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

Monday, October 9, 2017

Reading the Research: Visualizing Biological Sex

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

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

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

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

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

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

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

Friday, October 6, 2017

Dissociation: A Stranger to My Life

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

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

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

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

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

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

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

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

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

Wednesday, October 4, 2017

Legwork and Life, week of 10/4/17

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

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

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

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

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

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

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

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

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

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

Monday, October 2, 2017

Reading the Research: Treating Untreatable Depression

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

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

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

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

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

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

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