Legwork and Life, week of 8/7/19

Posted on by Realistic Autistic
This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.


My wifi experiments are bearing some fruit.  I can\’t say I feel all that much better rested yet (haven\’t been sleeping enough), but when I shut off the wifi at night, it feels almost like a weight has been lifted off my shoulders.  This has happened every time I\’ve turned it off for the night, which… I mean, I could be imagining it, that\’s definitely possible… but I feel like if I was going to confirmation-bias-hallucinate something, it\’d be something more akin to \”feeling less brain buzzing\” or something.  

So I don\’t know, it\’s potentially beneficial anyway.  Still trying to decide whether it\’s worth the annoyance of having to have my data plan on while reading in bed.  I like checking my webcomics and reading research articles before going to bed, but that has to be done on the data plan if I don\’t have wifi available.  

Finally, regarding the wifi/dirty electricity experiments, I still haven\’t moved my bed away from the smart electricity meter yet… maybe I can do that this week, with my spouse\’s agreement.  It\’s his house and bed too, after all.  

And because my supplementation regimen isn\’t complicated enough/I still have problems, I\’ve added something new to my lineup.  I\’m biologically female, and therefore suffer periods roughly once a month.  Keyword here is \”suffer.\”  Apparently curling into a miserable ball for a couple days a month is not supposed to happen.  Discomfort is expected, misery is not.  So I\’ve started on a (my) doctor-recommended supplement, which will hopefully, in a month or so, make my periods less misery-inducing.

I don\’t, as a rule, have any particular feelings about my biological sex or anyone else\’s, but at least once a month, I resent my internal organs\’ ability to cripple me for a time.  As I imagine anyone else might resent something if it disabled them with such regularity.  Hormones end up being the issue.  I have unstable, non-clockwork hormones, for some reason.  This supplement will regulate those hormones, but in a way that doesn\’t add any more to my system the way birth control does. 

I\’ve always been kind of leery of hormonal birth control, and as it turns out, that was a good thing.  Apparently hormonal birth control can come with some really \”fun\” side effects, particularly for a system as sensitive as mine.  I\’m very uninterested in massive mood swings, any additional weight gain, soreness, nausea, or any messing around with my libido. 

This supplement isn\’t hormonal, but the herb it\’s mainly made of is apparently involved in supporting the hormonal cycle.  So I guess we\’ll see.  

Reading the Research: Appearing Disinterested

Posted on by Realistic Autistic
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 really makes me question the definition of \”provocative.\”  The premise of this paper appears to be, \”autistic people, like other humans, want social contact and relationships with others.  This is true despite behavioral traits (like poor eye contact) that would seem to indicate otherwise.\” 

Calling this \”provocative\” \”challenging\” or \”new\” strikes me as very disturbing.  I actually spent a couple minutes asking my computer screen/academia variations of \”why?\” after reading the article.  If accurate, it suggests that most of academia has never met an autistic person or read much of anything published by one of us.  In the fields that deal directly with studying us, this is more than disturbing, it\’s outright terrifying. 

Once and for all, everyone.  Autistic people are people.  We have the desire to make friends, be with others, maybe find a significant other, get married, have kids, etc.  I have at least one autistic friend who is suffering from crushing loneliness because of how they\’ve been treated by others.  It can be that due to our unusual behaviors, points of view, and differences, that we despair of having friends or relationships, and decide we\’re better off without them… but any person can do that in the right circumstances.  It\’s not an autism thing. 

Lack of eye contact in neurotypical people may signal a lack of interest, but for us, it can be a way of minimizing pain or moderating information overload while in a conversation.  It hurts me, like a baseball bat to the head, to look directly into peoples\’ eyes, or even right at at their faces.  If I\’m having a bad sensory day, a high anxiety day, or I\’m upset with the person, I won\’t look directly at their faces, because why should I increase my suffering when the tradeoff is simply \”the comfort of others\”?  Ya\’ll can deal with some poor eye contact so I can have another 15 minutes out of the house, and finish my grocery shopping or whatever. 

Repetitive movements can be a way of calming one\’s senses in a busy environment.  Some people play with fidget toys, knit, or do other activities while conversing.  This is like a full-body version of that.  I once knew a guy who bounced both his knees.  He said he had hypertension, I think, but I actually learned to bounce one knee because of him.  It\’s a movement that can be hidden below a desk, which makes it much more socially appropriate than full-body rocking.  However, the larger the movement, the more comforting and realigning it can be for the senses.  Behaviors like rocking, spinning, rolling, etc. serve this purpose. 

Echolalia, or repeating, word for word, phases or words spoken to you, is probably the toughest of these behaviors for a neurotypical person to handle.  Most people have been subject to mocking via repeating our words back at us, often as small children, but even sometimes when we\’re older.  When an autistic person does the same thing, it can be hard not to see it as either mocking or as a sign of disinterest or lack of understanding.  It\’s simply not done. 

Thing is, conversations are hard.  The demands of \”a proper conversation\” with give and take and paraphasing what the other person says to be sure we understand it, and responding in the same mood, and finding what words to move the conversation along, can be extremely difficult even for neurotypical people.  Not surprising, then, that autistic people find other ways of doing things.  We can even build up whole vocabularies of phrases used differently than the \”normal\” way, kind of like our own personal language or set of in-jokes. 

The actual article linked with the DOI at the bottom of this article also mentions lack of pointing.  I\’m not sure how common or uncommon that is in autistic people, but I strongly remember my mother telling me it was rude to point at people.  I\’m not sure if that explains the whole of the phenomenon, but it might factor in.  It may also be that the pointing behavior, signaling a bid for attention, has simply been rewarded with negative consequences so much that most autistic people don\’t bother.  I\’m honestly not sure. 

If nothing else, please remember the bottom line: different does not mean broken.  We are still people.  We still want to have friends, relationships, family, etc.  Please don\’t mistake our differences for unsociability. 

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Histamine Overload Day

Posted on by Realistic Autistic

The Theory

When I was at my doctor\’s office (my LENS doctor, not my primary care doctor who I rarely see), we were chatting about my health and she suggested, based on my previous complaints, symptoms, and observations about exercise, that I try experimenting with high- and low-histamine foods, as I might have an intolerance or simply be flooded with them.
Essentially, the theory goes that some people may have too high of levels of histamines in their bodies, and this has bad effects on your brain, your immune system, and your digestive tract.  You can tailor your diet to avoid high-histamine foods, which are mainly fermented foods, and thus live a healthier life… but this is only likely to help if you actually do have the intolerance or systemic overload.  
My doctor explained this as kind of like having a low level allergic reaction… except all the time.  So you\’re always dealing with things like congested airways, itching, a skin rash, watery or itchy eyes, etc.  The thing is, it may be so mild you don\’t even notice it, yet still have bad effects on your life.  And in fact, allergies like this can entirely bypass your nose and just affect your brain instead, causing depression, misery, and anxiety.  Now, the reasons she brought this up included the apparently-not-insect-bite-after-all bumps I came back with after one expedition for black raspberries, and my lifelong hatred for exercise.  
The latter doesn\’t immediately make sense.  The thing is, there are two categories of foods you have to watch out for with a histamine issue.  The first is foods with high histamines, of course.  More histamines is bad.  The second category, though, is histamine liberators.  Your body stores histamines, and histamine liberators elbow your body into releasing them, which makes you feel worse.  
Exercise, as it happens, has that exact same liberation effect.  So a person would reasonable hate exercise if it felt like they were dying every time they did it.  Like, say, if their throat closed up, they found it hard to breathe, they itched a lot, and in general they felt terrible.  Which… isn\’t an unreasonable assessment of my feelings on jogging and most other forms of exercise.  
There\’s also the fact that in the summer, I\’m basically marinating in toxic algae spores due to the pond outside, which… I\’d assume would produce histamines, given its deleterious effects on my system if I go outside and breathe for like two minutes.  I also find myself sleeping with my arms over my head, which is notably helpful for opening airways, but does a number on my lower back… so you\’d think I wouldn\’t be doing that on purpose.

Counter-evidence is that I tested negative on a battery of allergy tests at the beginning of the year.  Like, I\’m allergic to nothing they tested.  Literally nothing.  The test included various local plants that often set people off.  I also haven\’t personally noticed regular congestion and such until recently.  It\’s like my cold never truly ended.  I cough a bit here and there these days, and occasionally need to blow my nose.  

There are two informational documents I was sent by my doctor, so here they are: The Healthline Summary and the Topic-Specific Site.  I read them both, or at least skimmed them both, and paid careful attention to the list of foods.  Surprisingly, I don\’t really like most of the high-histamine foods.  So most of them aren\’t in my diet.  I can\’t say the same for the histamine liberators, though.  A good number of those rotate through my diet regularly.  
So there\’s cause to test this theory my doctor has… and I intend to.  Slightly recklessly.

The Plan

I am, as of yet, still fairly young and thus resilient.  I am therefore going to take a single day to present my system with many high-histamine foods and histamine liberators.  The results will either be dramatic and prove the point, or minimal-to-non-existent, and strongly suggest that this is not an issue I have.

I should note my doctor specifically told me not to do this, and instead suggested trying a couple foods here and there, and seeing if I noticed differences.  Which is why I\’m terming this \”slightly reckless.\”  I don\’t think I\’m putting my life on the line, trying this, but I do think I\’m probably setting myself up for an extremely miserable day.

To do this experiment, I read over the foods, and prepared a menu for the day, incorporating enough of them to hopefully give a good test result.  While devising this menu, I made efforts to make the meals healthy, because it\’s already known that eating junk food makes you ill, and eating horrifyingly mismatched foods (like, say, jerky, pickles, and chocolate in the same mouthful) would also complicate the results by making me miserable as I ate them.  
I also had to allow for my particular diet choices, which meant only humane meats.  I know where to get bison jerky, so I can still try the fermented meat option, but things like store salami and most smoked meat products are out.  
With that in mind, the menu is this.
Breakfast: Cup of Greek yogurt with fresh pineapple and strawberry slices mixed in.  Sourdough toast with mixed nut butter on top.  
Lunch: Fancy grilled cheese with tomato soup.  Sourdough bread with aged cheese and shredded bison jerky.  Pickle and a handful of spinach for a side.  Orange for \”dessert.\”
Snack (if desired): chocolate and/or handful of roasted mixed nuts. 
Dinner: Marinated chicken (apple cider vinegar and soy sauce marinade), served over brown rice, with a banana and spinach salad with vinegar dressing for sides.  
Beverages: Green tea, black tea, and possibly a serving of booze at dinner.  
For extra credit, I may try to exercise that day as well, which would help free up any stored histamines I might have.  I haven\’t quite decided on this, because exercise makes me miserable, and I don\’t want to muck up my experiment by biasing it

Now, assuming this theory is correct and I have this problem, the resulting suffering will be misery.  I\’m young enough to try this, but not so reckless that I don\’t have a backup plan for alleviating my misery.  When discussing this theory with my doctor, she mentioned that while testing foods, I might keep vitamin C on hand, as it helps clean histamines out of your system.  So now I have a nice jar of lemon-flavored vitamin C powder, which I will mix into water and consume at regular intervals, should the effects be overwhelming.

I also have various decongestant medicinal products that served me fairly well during my cold a few weeks ago, and I might see about acquiring an anti-histamine as well, which would help curb any impressive acute symptoms.

The Day Of

The day started fairly normally for a summer day: not enough sleep because of the light levels.  Here\’s my ingredients:

Some of these we had at home, but most had to be bought specifically for this experiment.  This isn\’t even all the things, it\’s just what would fit neatly in the picture.

Breakfast commenced.

My yogurt cup didn\’t hold nearly as much fruit as I wanted it to, so I had some on the side.  I decided tea with breakfast was going to happen.  I like tea, but I usually don\’t treat myself to it. So that was nice.

After the first few bites, I had a cough, which left about as fast as it came.  I\’ve had those on and off in the last couple weeks, and still have no real idea what\’s going on.  A more lingering effect, which I didn\’t test because I was focusing on work and other things, was the seeming difficulty breathing.  My work is sedentary, thankfully, so that was not a crippling issue.  But it was very definitely notable.

More interestingly, and more detrimentally for sure, was the brain fog that really shouldn\’t have accompanied such a healthy meal.  It could be the yogurt, which I\’m not really accustomed to eating, and is dairy, after all.  I\’ve had poor effects with dairy.  That would normally be a factor I\’d eliminate for this test, but I had enough trouble coming up with a meal plan without that.

I also felt kind of like my stomach lining was… overwarm.  \”Burning\” implies actual pain, and this wasn\’t a form of pain I recognized.  It was just uncomfortable and a little worrying.  It didn\’t really feel like acid reflux, either.  So that was definitely worth noting.

Lunch was late, because I guess I had too large a breakfast in my enthusiasm for this experiment.

I… still really really do not like pickles.  Like wow, yuck.  I ate all four on the plate, but unless I can foist the rest off on somebody else, I don\’t think I\’m going to eat them.  The rest was basically fine, thankfully.  I ate the banana for lunch instead of dinner because of how ripe it\’d gotten, which was fine.  I was originally going to shred the jerky and put it on the sandwich, but I ran out of time due to needing to run errands.

I did again feel the sort of burn on my stomach lining, which was definitely disconcerting.  I noticed a certain difficulty in breathing again, like I had to work harder for my oxygen.  I may or may not have been imagining that, or letting confirmation bias run away with me.  This experiment couldn\’t be done double-blind as easily as my other experiments.

After lunch, my day\’s pace picked up, which, combined with the brain fog, caused me to forget to take a picture of dinner.  It was the meal as planned, though, vinegar/soy sauce marinated chicken over rice, with balsamic vinegar dressing on spinach, and the orange.

At dinner, I also decided to be a strange person and mix a mug of green tea with a shot of vodka, which wasn\’t as horrifying as you\’d expect.  Actually, I didn\’t really taste the vodka after it had mixed in with the tea and warmed to the correct temperature.  I have no idea if that\’s normal, or just a function of the particular brand of vodka (Grey Goose).

The burn in my stomach lining re-commenced after consuming two types of vinegar (but before consuming the alcohol, which does its own form of stomach-burn sensation).  I felt kind of warm in the face, which was new.  I would also say the brain fog returned, at least to a degree.

I finished off the night without needing to resort to my safety net:

\”BioFizz\” is maybe not the most marketable name I\’ve ever heard, but the product is quality.

Vitamin C is excellent for helping the body filter out histamines, so mixing either of these powders into water and consuming them would have helped flush my system of the mess I\’d forced into it.

The Results

I wasn\’t, I suppose, really expecting to break out in hives or suddenly have my throat close and have to be rushed to the hospital, but I guess I\’d hoped for something a bit more dramatic than \”slight trouble breathing,\” \”kinda burny stomach lining,\” and the ever-debilitating \”brain fog.\”  These were clear and obvious symptoms, but not the type I wa expecting.

I discussed my findings with my doctor.  She mainly told me it was something to be aware of, when considering why I might be feeling poorly.  It\’s clearly not the beginning and end of my health considerations, since I didn\’t end up in the hospital, but the difficulty breathing is suggestive, as are the other effects.

Something of note here is that many of these foods, I wouldn\’t normally eat.  They simply don\’t taste good to me.  Pickles and vinegar in particular come to mind, but in all honesty, I didn\’t really enjoy the jerky either.  There can be a correlation between \”what tastes good to you\” and \”what is good for you.\”

This is obviously not always the case, as per the various cases of autistic children (and sometimes adults) refusing to eat all but a very limited subset of foods.  Sometimes those refusals aren\’t merely based in taste, they\’re based in texture and sensitivities thereof.  I would guess that the \”if it tastes bad, you shouldn\’t eat it\” concept of eating is probably only referring to taste.

A good test during this histamine overload day, which I should have done but was so brain-fogged and tired that I didn\’t, would have been to go biking or power-walking.  The difference in my ability to breathe that day, versus regularly, would have been valuable information.

I\’m not entirely out of luck on that front.  While I probably won\’t redo the high histamine diet, I can attempt the opposite thing: dosing myself up with vitamin C, and then exercising at a moderate intensity.  If the experience isn\’t horrifying, that\’s all I\’ll need to know.  Perhaps I could even try jogging again.  Being able to tolerate high-intensity exercise would make it possible for me to burn calories easier, which would go a long way toward checking the slowing metabolism/rising weight effect of middle age.  Exercise also burns energy I tend to use being anxious, so it might also do wonders for my mental state, too.

In the end, it seems that high histamine levels are a factor in my life, but not an all important one. Fixing my histamine intake would most likely have positive effects, but is unlikely to solve all my health problems the way I\’d like it to.  I\’ll make note of any future testing I do on the subject, particularly the exercise/vitamin C test.

Edit (9/2/19): Histamines are definitely the bane of my exercise.  While apparently overdosing on histamines didn\’t really change my day-to-day experience, taking an anti-histamine and then exercising as hard as I could?  Yielded no misery at all, just hard work.  It was extremely weird to have those two sensations divorced from each other.  Exercise has always been a miserable experience for me in the past.  I\’m going to write an exercise-related post update for this.  As it happens, I know of a researcher that might well be interested…

Edit 2 (9/12/19): Yyyep, it\’s the histamines.  I tested my archnemesis of exercise, jogging, with an anti-histamine on a muggy swelteringly hot day.  I got very tired and my muscles screamed for mercy, but I did not get miserable.  I wrote another post about the exercise experience, which is here!