Monday, April 29, 2019

Reading the Research: A Dose of Nature

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 presents a relatively simple way to de-stress.  Though admittedly, it does rather depend on your proximity to a public park or some other form of reasonably-friendly nature.  20-30 minutes of time spent enjoying nature drops your stress levels, according to this study.  You do have to put down your phone/book/conversation with other people, though.  

I was somewhat bemused at the repeated use of the term "nature-pill," when talking about this type of therapy.  Only in the US, hopefully, is the myopic focus on pharmaceuticals so intent that alternatives have to be referred to in similar terms.  

I have mixed feelings on this study.  On one hand, sitting in sunshine for that free vitamin D is a thing I've been known to do.  On the other hand, bugs crawling onto my skin, buzzing in my ears, or even biting me, and thus driving me nuts, is very much a thing.  I have sensory sensitivities, including an oversensitivity to touch.  I now live in a US state where there's usually a bit of wind, which helps blow most aerial bugs away, but that wasn't the case in the past.  As a result, I have limited patience for being one with nature.  

The closest thing I have to having this in my schedule is going biking, I guess.  There are a couple nature-ish bike trails near my house, one of which is the result of the Rails-to-Trails program.  As such, it goes directly through a forested area.  Chipmunks, squirrels, and various wild birds are common sights.  The speed of the bicycle keeps all but the most lucky/unlucky bugs from making contact with my skin (though those naturally end up in my face...).  It also keeps me from feeling like I need to make conversation with the other people on the trail, which is a very nice bonus.  

I guess this kind of thing is kind of why I wanted a sunroom in my dream house.  Nature without the bugs.  I had one in my first childhood home, and while it got quite cold in winter, I did enjoy being in there sometimes.  I'm not sure it'd count for purposes of this study/effect or not, though.  


Either way, this is worth trying if you have a park, forest, or nice back yard nearby, and a wound up child or self.  
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(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.)

Friday, April 26, 2019

Intelligent Lives: Attending a Screening

I went to a screening of Intelligent Lives in my area yesterday.  It's a documentary about people with intellectual disability (ID; ie: low IQ).   It touches on the overuse of the IQ test, but its main point is showing how people with intellectual disabilities are normally institutionalized, but don't need to be and shouldn't be. 

In the main, it follows three people with ID, and tells the finished story of a fourth.  I was pleasantly surprised to see that two of the three living subjects are dark-skinned.  The movie points out that black and brown people are twice as likely to receive ID diagnoses, so was quite appropriate. 

My opinion of IQ is known, but I'll summarize it quickly.  The Intelligent Quotient test was never meant to be a catch-all measure of a person's value or chances of success in life.  It was created to measure one thing: your ability to learn in a standardized school environment, with standard school subjects. 

This is good information to have, naturally, in a society where schooling is mostly verbal/textwall-y and also compulsory.  However, it's hardly the whole picture.  It's missing things like:

  • how well you can sense others' emotions and motives.
  • self-knowledge, recognizing your own reactions, motives, strengths, and weaknesses.
  • your sense of musical pitch and rhythm (perfect or approximate pitch)
  • how graceful or clumsy you are in team sports and other athletics
  • your grasp of what is important in life, what life is about, why we live, and why we die.
  • how well you can visualize things in 3D, move them in your head, and plan things out without ever touching or seeing them.
A person can excel in many of these things, but still have a low IQ.  And because of how much emphasis we place on IQ, that very intelligent person will be afforded few opportunities to use their natural talents.  They will generally be considered unable to make their own life choices, and set apart from their peers.  

Needless to say, I hope, this is both absurd and wrong.  

I attended this screening without knowing what kinds of people would be there, and how far along the community was in understanding things like "why self-determination is important," "the stress and frustration common to siblings of people with disabilities," and "the importance of including the voices of the people you're talking about in your discussions."  

I was pleasantly surprised, as the discussion afterwards seemed to have a good sense for the first two points.  The last, however, was entirely neglected.  While there were people with ID present, their voices were not asked for.  It was, in the end, a meeting of special education teachers and parents.  

I spent a good amount of time being rather uncomfortable about presuming to speak for people with intellectual disability, but opted to do so anyway, merely because no one else was going to.  I do not qualify, and never have qualified for the ID diagnosis.  What I do have is the knowledge that self-advocates are often excluded from these discussions, often out of sheer ignorance.  It simply doesn't occur to parents and teachers that adults with the condition would have anything to say.  

I'm afraid I couldn't muster the mental organization and politeness to address the room as a whole, and point out the obviously missing piece in the discussions.  I was running on very little sleep and had to skip dinner in order to attend the movie, which made me distrust my ability to make my point in an approachable fashion.  Honestly, I probably should have made the point anyway, but I was really super uncomfortable representing a group of people that I wasn't technically a part of and didn't have any immediate friends' thoughts to fall back on.  

I'll try to do better if I go to one of these things again.  I have a better sense of the community now, which will make me more confident in dealing with it.  Given how the people at my discussion table reacted to my comments on the subject, it seems like this particular message ("invite adults with ID to the discussion table, give them the microphone, and listen to them") needs to be heard.  Repeatedly.  If it takes an autistic self-advocate without an ID to make that heard, at least someone's going to do it.  

Wednesday, April 24, 2019

Legwork and Life, week of 4/24/19

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.

Wellp, Easter weekend happened.  I seem to have survived.  It wasn't like the weekend was awful, honestly.  It was just people-intensive and I went into everything already at low energy.  I feel kind of bad about that, honestly.  Had serious amounts of trouble smiling at people and cameras, and making any kind of small talk.  

I can't quite decide if it's a logical extension of the anhedonia I've been suffering from for a couple weeks, or whether it's just low energy overall.  Anhedonia is the lack of interest and enjoyment in previously enjoyable activities, which can include food.  It's normally associated with depression and burnout.  I don't think I'm extra depressed?  So maybe burnout, I guess.  I'm trying to be good to myself and take lots of time for self-care, in case it's that.  

I guess maybe there's an argument for depression, actually.  My grandmother isn't doing super well.  It was her birthday a couple days ago, and we had a small party.  I'm afraid she seemed rather tired through the whole thing, though, and wasn't super social.  Felt like she was making the best of it, anyway.  There were certainly nice things, like sparkling grape juice, chocolate cake, and each of her three children with birthday wishes (one via phone call, but still).  Some friends stopped by as well.  So it was a nice party.  I just felt sad about her reduced enjoyment of the party.

I did get highly distracted by a live bird habitat in the same room, though.  I spent some time Googling the types of birds, but didn't manage to ID every single one.  There was no placard explaining them, of course.

China cabinet-sized case with large glass paneling.  Contained inside is greenery, perches, food, water, and natural-looking bird shelters, along with four kinds of live birds.
This is the whole thing.  The plaque just says the case was donated. 
Closeup of small, greyish dove-type birds with orange rings around their eyes.
Diamond doves, from Australia.  Just two of these in the whole case.

The floor of a bird display case, with a red plastic food bowl and several live birds
Food is in the red bowl.  


Closeup of small finch-like birds in a spherical shelter.
I think these are Society Finches, or Bangladesh Finches.
They're fairly nondescript, though, so I'm honestly not sure.

Vine-like greenery and bird nests with finch-like birds inside an artificial habitat.
Another shot of the nests and greenery.















































































So I spent a good amount of time just watching these fly around.  For all that they're so accessible to look at, they seemed surprisingly ill-at-ease with being approached.  The calmest were the diamond doves, which is maybe not surprising since they're relatives with the common city pigeon.  The finches and finch-like birds kept a close eye on anyone approaching the case, though, and flew away from the immediate area of visitors.  

I couldn't identify every type of bird in the case, but I'm pretty sure about the diamond doves and the orange-cheeked waxbills.  The society finches I'm not sure about, since they're a created species and come in many many colors.  And there was one more type of finch-like bird in there that was basically just dark brown in color, and I had no idea how to look up what species it was.  

While doing all this research, I found a site that was pushing pet bird ownership, and proposed doves or finches as an acceptable alternative to owning a parrot or parrot-like bird.  Doves and finches aren't as handle-able or affectionate as parrots, but they're a great deal quieter in their vocalizations.  I'm somewhat interested in the idea, as dove cooing can be relaxing, but it bears a lot more consideration before I go see about getting a pair of doves, a cage, and food.  

Monday, April 22, 2019

Reading the Research: Supported Sports

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 encouraging, but really got me wondering whether it would have made a difference for my life, specifically.  Researchers at the University of South Australia have put together a program to help sports coaches include and teach special needs kids.  Included are supports for sensory issues, introductions to the equipment, literal language rather than jargon, and visual teaching methods. 

So, this is good, right?  Well... I personally have a very low opinion of sports overall.  I'm sure some of that is sour grapes, because I've had maybe one positive experience when being a part of a sports team.  It was my local soccer team in grade school, and we won second place or something.  Every other team or pickup group I've been a part of was... let's say "a miserable experience" and move on. 

Is that because the coaches and other children had no idea how to teach me or handle my unusual autistic self, and as a result I was excluded and outcast even more than usual?  Is it because my personal klutziness didn't lend itself well to being a sports star?  Is it because I'm heavily introverted and usually extroverts do better in team sports? 

Probably the answer is D) All of the Above, As Well as Other Unlisted Factors.  Would a program like this have helped make team sports a more positive experience for me?  Probably.  Would that have generated less negativity towards exercise and sports in general?  Probably.  Would it make me struggle less in other aspects of life?  Perhaps, if the team sports resulted in friendships and personal connections.

It's a moot point in regards to my life specifically, but it's not moot when it comes to autistic kids present and future.  So I'm glad, if a bit dubious, that programs like these are being developed.

I actually have other issues with team sports, but those objections are more philosophical in nature and not so easy to address in broad brush strokes.  I dislike tribalism in the extreme, because I'm almost invariably excluded from the "in group" in such situations.  I also think sports that involve a lot of body contact or outright fighting (American football and boxing, for example) are barbaric, and the fact that these athletes' bodies and brains are wrecked in a decade or so is really horrifying.  That second objection shouldn't exclude less vicious sports from existing (baseball comes to mind).  I guess e-sports might eventually rise to prominence as well, though those will be considerably less healthy for the players than the kind you run around outside doing. 

Fortunately for everyone who loves sports, I will likely never be put in charge of which sports live and which die.  And perhaps, with programs to help coaches teach autistic kids, more autistic people in the future won't hate sports the way I do. 

(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.)

Friday, April 19, 2019

WYR: Types of Self-Advocacy

http://www.thinkingautismguide.com/2019/02/the-meaning-of-self-advocacy.html

Advocacy comes in a lot of forms.  The kind I do is mostly the socially-acceptable type.  I go through the appropriate channels to speak to the appropriate people.  I politely make an annoyance of myself while asking for change.  Sometimes, this even pans out into actual change. 

I am massively privileged in my ability to do this.  I am, at first glance, a "functional adult," sufficiently "normal," and as such, granted the basic respect most humans give a stranger.  I am fully verbal most days, and my autistic oddities can, on shallow inspection, be shrugged off as simply eccentricities rather than disabilities.  As such, people sometimes listen to me.  What I do is the most acceptable form of self-advocacy. 

The author of this article has clearly led a very different life.  They have experience with institutions, with nonspeaking people, and with oppressive support services.  This makes their words very important to understand. 

"All behavior is communication" is a noteworthy philosophy here.  Babies cry if they're wet or hungry or in pain.  The fact that they have no words for their distress doesn't make it any less communication.  If a child never develops sufficient speaking capabilities to be "normal" that does not impede their ability to communicate.  It only impedes our ability to understand. 

Another note about self-advocacy, and advocacy in general: it generally does not make you friends.  This is even true with the most polite self-advocacy that I do.

Most recently, I advocated for myself, the restaurant workers, and my family, when I found us in an excessively loud restaurant environment.  I measured the sound levels in the room and found they were around 90 decibels.  Also known as "gives you hearing loss in less than 2 hours" ranges.  Now, this was vastly unpleasant to me, so I put in earplugs... but my family couldn't hear each other talk... and the restaurant workers would naturally have shifts longer than 2 hours, so they're pretty much doomed to hearing loss. 

The waitress appreciated my concern, but her manager really didn't.  So I'm sitting there wishing I could just melt into the floor, and the guy is explaining to me that the restaurant environment is "important" and other peoples' enjoyments matter also.  I have a hard time making an ass of myself on purpose, but I really should have.  The noise level really didn't drop much at all after I complained. 

Can you imagine if I'd instead had a meltdown at the table?  Bet it would have dropped the noise level really really fast, with all those people stopping their conversations to stare, and the musicians pausing their routine to to do same.  But the interruption would likely have only been temporary, with my family being asked to leave, I'm sure.  Still, if the reason was known (for example, if I was screaming "it's too loud!" repeatedly), it might make people think. 

Both methods are self-advocacy.  One is distinctly less socially-acceptable than the other, but both are valid forms of communication.  They don't become invalid just because someone refuses to listen to them, or doesn't understand. 

Please, read this article and its examples of advocacy.  If you have nonspeaking or low-verbal people in your life, consider their behaviors in the light of self-advocacy.  

Wednesday, April 17, 2019

Legwork and Life, week of 4/17/19

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.

I mentioned last week that I'd picked up a meditation app.  I'm still working with that, but I'm finding my posture is a very seriously off... and also that bad habits are very hard to break.  I hear there are things you can use that'll help monitor your posture, basically beeping at you when you get too far off a healthy position.  I dunno if I want to get one of those, but it'd probably help, anyway.  

In other news, I seem to be basically recovered from whatever was making me ill.  It just sort of faded away until I didn't notice it any more.  I guess that's how that happens sometimes.  In the meantime, though, the weather was obnoxious and opted to pretend it was winter for a bit longer.  So I haven't been able to get out and bike again yet.  

Just yesterday, though, it warmed sufficiently for me to go foraging with my friend for the first time!  The haul: 


This is field garlic.  We didn't gather a whole lot, because it's wise to try just a bit of a new food before eating a ton of it.  But in this case, it's pretty much just like green onions, so I'm not too worried.  I'm more concerned that I won't finish it before it rots, honestly.  But I guess it's an invasive species in this area, so if it rots, it's not really the end of the world.  

I had kind of an interesting experience aside from going foraging yesterday, also.  I was developing the precursor to a tension headache due to stress and shoulder misalignment, and I happened to A) have peppermint oil around and B) remember my doctor insisted it was excellent for headaches.  So I put some on the back of my neck and a bit above my upper lip.  Basically as soon as I had done that, my headache stopped.  

It was so sudden, I was startled.  Though appreciative, obviously.  I looked it up later, and it seems you're supposed to mix the peppermint oil with coconut, olive, or some other less reactive oil before applying it to your skin.  Otherwise you can get rashes or have breathing difficulties or other things.  Still, considering I needed to run out the door shortly after that, it was a really nice find.  I have a couple bottles of peppermint essential oil, so the next time I get a tension headache, I guess I'll know what to try first.  Works way faster than regular painkillers, too.  

Monday, April 15, 2019

Reading the Research: Non-Surgical Brain Stimulation

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 encouraging... with a caveat.  The study suggests the the recovery process from severe depression may be helped forward with things like neurofeedback, transcranial magnetic stimulation (rTMS), and transcranial current stimulation (tDCS).  These are fine.  To my horror, though, they are also including electroconvulsive therapy (ECT) and magnetic seizure therapy in these recommendations.  

So since depression is such a common side effect of living as an autistic person in a world that isn't built for us and often doesn't accept us... let me explain these different therapy types in brief.

Neurofeedback, though not listed in this article, qualifies as a non-surgical brain stimulation.  There are active and passive versions, with the active ones trying to teach you how to modulate your own brain waves, and the passive ones politely nudging towards changing them for you.  In general, the healthier changes stick, and the bad ones are rejected in favor of past brainwave patterns.  It's kind of weird to describe, but I can say from personal experience that it does work if done properly.  It's a slow process, which can be preferable if the person would not do well with quick changes to their life.  (That includes most autistic people.)

Trans-cranial magnetic stimulation (TMS, or rTMS), is the therapy John Elder Robison undertook more than half a decade ago.  Basically, using our understanding of the parts of the brain, scientists can focus a magnetic field onto parts of the brain, suppressing or enhancing their function.  Mr. Robison took part in an experimental group where they did this to part of the brain that involves communication.  It turned on his ability to read other human beings and their non-verbal social cues.  He wrote a short essay about it, and also a whole book which I reviewed later.  It didn't take very long to have effects for him, but the quickness of the change had some rather drastic effects on his life, as you can read in his book.  

Trans-cranial direct current stimulation (tDCS) is kind of like TMS, but instead of magnets, they use direct current electricity.  Like TMS, you can enhance or suppress the function of a specific part of the brain.  Unlike TMS, which uses the brain's own electricity to make the change, tDCS uses external electricity.  There's less research and case studies available for its use specifically for depression, but there is some.  Likely the resulting effects would be similar to Mr. Robison's experience, given the similarity of the treatments, but without a larger body of evidence, it's hard to say.

All of the above therapies, I would recommend, albeit cautiously.  Do your homework on them.  Make sure you're prepared for the quickness or slowness of the effects.  Only receive treatment from licensed providers.  You get one brain in this life.  Currently, we can replace knees, shoulders, even whole limbs.  But not brains.  Keep that in mind while I talk about the last couple procedures.  

Electro-convulsive therapy (ECT) is a very old procedure, with use dating back to the bad old days of insane asylums, where they'd strap the poor person into a chair and essentially electrocute them to induce a seizure.  The modern day version involves anesthesia, muscle relaxant, and a lot more care for your comfort, but in the end, is relatively unchanged in its treatment of the brain. It causes a seizure. Seizures are bad, and cause brain damage.  That would be why we try to stop them from happening in literally every other part of life.  With sufficient brain damage, yes, a person's depression might improve.  Or it might get worse.  ECT is untargeted.  Please don't ever do ECT.  There are better options available, such as the ones I listed above.  

Magnetic seizure therapy is the more modern-day answer to many criticisms of ECT.  Instead of using electricity, it uses magnets to accomplish the same goal: inducing a seizure.  It seems to be able to do so in a more targetted fashion than its predecessor.  This is a very very new idea, and there isn't a whole lot of research on it as of yet.  Given its aim is, y'know, to induce a seizure, also known as brain damage, I really don't recommend you try this experimental therapy either.  Opt instead for one of three I listed above ECT.  

(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.)

Friday, April 12, 2019

WYR: Experiencing Meltdowns

http://www.thinkingautismguide.com/2019/03/meltdowns-how-autistic-humans.html

This is one of those rare autistic points of view on meltdowns.  Because they're mistaken for tantrums in small children (they're not tantrums and shouldn't be treated that way), and are considered extremely socially unacceptable, few people are willing to talk about them.  The vast majority of those that are willing, are professionals or parents, as the author mentions. 

Professionals and parents have valuable things to tell us about meltdowns.  But nothing replaces firsthand experience.  Unlike most of the things I link on this blog, this article is not a textwall.  It includes comics and artistic illustrations, each of which includes an accessible text description. 

A sidenote about accessible text descriptions: they're meant for the blind or otherwise visually impaired.  The idea being, if you can't see the picture very well (or at all), you can instead read the description of the picture and get the gist of what it's trying to convey.  But like closed captioning, they can help populations they weren't intended to help.  As a person with vision corrected to 20-20, I should reasonably have no use for text descriptions of pictures.  However, possibly due to the weirdness of my brain's detail processing, I find it can be useful to read someone else's interpretation of what's happening in a picture. 

This is especially true for art, and I found the descriptions invaluable in this article.  They pointed out details I'd completely missed when I looked at them myself.  For depictions of this particular subject, it was valuable to have those descriptions around. 

Even after reading this description, I'm uncertain as to whether I've experienced meltdowns in my life.  I have had the immense privilege of having my own room when I was young, and usually having someplace reasonably safe to flee if I can't handle things while out of the house.  Sometimes that's just the bathroom, but if it works, it works.  This lets me escape situations when I'd start getting agitated the way the author describes here.  At worst, I've socially-ineptly had to shoo a friend out of my room, or had to go sit in the car instead of socializing with my family members.  My actions in both those situations hurt feelings, but don't really compare to the situations and pain the author describes here.

I do think I experience the building up sensations and low energy effects described here.  They just don't end in an explosion, they end in me hiding until I calm down.  Or canceling everything in my day so I can go home.  Again, I have the privilege of making those decisions to leave.  Not everyone does.  Especially children, who have far fewer choices in life than adults. 

Regardless, I found this point of view piece very educational, and I hope you do too.  

Wednesday, April 10, 2019

Legwork and Life, week of 4/10/19

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 bike is fixed!  I had sent it to the shop a couple weeks ago to get it tuned, because it needed tuning last year and I just... didn't.  It's somewhat inexcusable, but I was so busy using it that I just didn't want to go without it for the week or two it'd take to have it worked on.  It was expensive to do, frustratingly.  So I'll probably look up some how-tos for bike care rather than have it professionally done every year.

Fortunately, it paid off.  The bike functions quite smoothly now, and I've been out twice on it already.  Spring is only just beginning around here, and all the plants are pretty much dead still.  I did manage to locate a small sea of cattails, so my friend and I will definitely be back to that area.  I'm excited for this whole foraging thing.  It'll combine exercise with food.  The latter is more my forte than the former, but y'know, baby steps.

The very professional finger slightly over the lens.  I am such a good photographer.  XD


Also health-related, I picked up a new meditation app.  Remember I mentioned like a month ago about the deer-human theory of stress?  Where healthy creatures, like deer, are calm most of the time, and go into fight/flight when there's a threat, but shift back to calm once the situation is over?  And humans don't, because we've created a world where you can't club all your problems to death.  Or at least, clubbing your debts to death wouldn't solve your problems for very long.  The idea with meditation was to retrain people to shift themselves back to calm, stepping back from the stress of their problems for a short time.

I've tried meditation in the past.  I've found it rather like trying to cage a hummingbird with a whisk.  I was somewhat hampered by the lack of instruction and free content, and grew discouraged with my lack of progress.  This particular app seems to incorporate social media with tons of free content.  So I'll give it a go.

Another issue with it is my sitting posture.  I have had awful posture basically my whole life.  So it'll be a goal this time around to find a way to sit such that I'm comfortable, but my back doesn't hurt after a while.  I've gotten around this in the past by simply lying on my bed.  Hard to get a stiff back if it's resting comfortably on a supportive sleeping surface.  Still, I'd like to have better posture overall.  It'd probably reduce my need for chiropractic work.

Lastly, I've been sick for almost a week now.  I think it might've started as "oh boy, there's mold in the house again..." but it proceeded to turn into some kind of sinus issue.  It's made me a bit more of a shut-in than is normal.  Several of my weekly activities include contact with elderly people, and I can't get past the thought of getting someone's grandparent sick.  Peoples' health can become fragile as they age, and what mildly inconveniences me could kill someone else.

Anyway, I haven't been a complete shut-in.  I've done my grocery shopping, met with friends, gone to church, and attended a meetup for autistic adults.  So I think I'm still doing okay.  I'm sure such a limited schedule would kill some extroverted people, but I'm highly introverted and still feel fairly satisfied with my social life.  So meh.  I'm calling it good enough.  

Sunday, April 7, 2019

Reading the Research: Linking the digestive tract and the brain

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 provides more evidence for the gut being a vital part of your mental and emotional health.  Gut health can be a major quality-of-life issue for autistic people, both adults and children.  I thought it was kind of funny that the article insisted scientists had known about this link for a while, but it's completely ignored in standard medical checkups or even more specific complaints. Most of what I learned about gut health, I learned from my LENS doctor. Y'know, the one classified as alternative medicine.

I was pleased to see this was a study done on humans, though I could certainly wish for more than 16 participants.  While I recognize animal studies are an important part of the scientific process, and certain things can't be done to human subjects, I'm still happiest reading the results of studies like these.  They're most applicable to life. 

I'd be curious to see what the adoptee outcomes would have been like if they'd been given probiotics while developing.  At present, I routinely take two different probiotics, which seem to help me digest things better as well as support my mood. Perhaps the probiotics would increase the diversity of the kids' digestive tracts, and help their brain function look more like the traditionally-raised children?  

I'm not certain you can do that kind of long term study ethically, though. Often if you're testing a new treatment, you have two groups. One receives the treatment immediately and is compared to the second, which receives the treatment after the study is done. You are therefore not permanently withholding treatment from anyone, which is more ethical than what I was suggesting. The issue is that it can take a good while to mend the biodiversity of a gut. 

Basically, it's not a quick or cheap research idea.  Hopefully something like it will come through the pipeline sooner or later, because there's still a distinct lack of understanding about the subject in most places I've been recently. 

(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.)

Friday, April 5, 2019

Hospital Rooms are the Worst: Observations from a visiting autistic

I went to visit my grandmother a few months ago in two different hospitals.  As such, I got a chance to observe a bit of what being in a hospital room entails.  I've had the very good fortune to not be hospitalized after the age of 3, so I don't have any firsthand experience to draw on.

Also, full disclosure: I am not a medical professional and have very little experience with why the system is designed the way it is.  Still, the experience was sufficiently, um... enlightening, that I thought I'd share a bit of my observations.

Before I begin, I should note that I have no real complaints about the medical care my grandmother received, and the hospital staff I dealt with seemed neutrally helpful at absolute worst.  Most were warm and caring.  The corridors of the hospitals were fairly well-marked, even containing artwork and large windows to let in natural light.  I really can't complain about most of the experience.

I did want to highlight a few things, though, because first and foremost, I super duper do not ever want to have to stay overnight in a hospital room.  There are so many reasons for this.  We'll start with the easy ones.

Hospital rooms are noisy.  The doors to these rooms are often kept open.  If the patient can't get up by themselves, that's even less negotiable.  That means people walking by, whether they're staff or visitors, are clearly audible to my sensitive ears.  The air conditioning unit/heater was also very loud.  If the person is kept on oxygen, that machine also erratically makes noise aside from the puff of oxygen every 5 seconds.  I can't imagine having to try to sleep with that on.  And lastly, my grandmother was on an IV.  The IV was automated, to a point, and itself made this faint, but highly erratic scratchy-clicky noise.  It's probably highly ignorable to most people.  Not to me.

Also on the sensory end of things, the temperature.  It was the middle of winter when I visited, so while the room itself seemed warm upon arrival, I quickly found, sitting still and visiting, that I became cold.  For people who are stuck recuperating in a bed, this would mean they'd be cold all the time.  Yes, the hospital might provide blankets, but I've never yet had a nice warm comfortable blanket provided by a hospital for any procedure.  "Easily washable" and "highly comfortable" simply don't mix, I guess.

Then there's of course the various things that come with your care in the hospital.  The oxygen puffs I mentioned?  Besides being loud, they are also cold.  Y'know how it's painful and annoying to have a frozen nose when you're walking around outside?  With the magic of modern medicine, you can have an icy nose while you're inside, too.  Then there's the IV in your hand, which can hurt as well as leaving you tethered to a bag on a pole.  You may not be able or allowed to get out of bed to stretch your legs, as well.

Distinctively disturbing-to-me, also...  hospital rooms are depersonalized, to the point of being oppressive (to me).  Neither room my grandmother inhabited during her stays was small.  And yet, there was little-to-nothing personalized.  All the surfaces were filled with hospital equipment, with almost no place for flowers, get-well-soon cards, or even personal possessions.  The second room had no window at all.  And both rooms were cluttered with medical equipment, to the point of barely being able to have visitors sit near the patient.

The staff, nice as they were, rarely if ever knocked on the door before entering. And this could happen at any time, including the hours when you should be sleeping.  There was a guy that walked in without a word, installed a piece of equipment in the room using power tools, and proceeded to waltz back out again.  I can't say for sure that this was normal, but nobody in the room batted an eye about it.

Finally, there was a certain amount of forced passivity about the whole experience.  You can be confined to a single room, with few or none of your personal possessions.  You do as you're told, eat what's put before you, and pretty much just sit in bed until you're well enough to leave.

I dunno if it's clear why I find all of this horrifying from how I've written this post, but I'll explain.

From a sensory standpoint, a good place to heal and rehabilitate is not a noisy, chilly one.  With random noises and people going by at all hours, I wouldn't be able to sleep well, which would in turn slow my recovery as well as degrade my sanity.  Also, I get miserable when I get cold, so I would spend most of my time miserable and under scratchy, unpleasant hospital blankets.

As an autistic person, and to a lesser extent, as a human being, I prefer comfortable, familiar surroundings.  That means the having the weird light blue faux-fur blanket in my computer chair, my tablet and computer, a plastic glass with filtered water, and roughly a dozen other things, minimum.  Guess how many of those would fit in one of these hospital rooms?  (If you guessed "just the tablet, maybe," you win!)  I'd quickly become miserable without these things, assuming the cold didn't already make me feel miserable.

I would be constantly removing the itchy, chilly nose-pump oxygen thing, and probably getting yelled at by the staff for doing that.  I'd probably want the IV removed as soon as it started aching, as well, which is super unhelpful considering why they use them.  I would probably become embarrassed and annoyed by the computer screen with the readout of my pulse, blood pressure, and whatever else other medical details they cared to track via the equipment.

But in the end, what would probably be most poisonous to me would be the forced passivity.  I like being independent.  I like having the ability to say "I'm going to get up and take a walk now" and then going and doing it.  Hospital rooms seem very geared against that kind of personal agency.

I recognize that this is partially by design.  Medical care is hard to give effectively, particularly in cases when you don't know why the patient is sick or injured in the first place.  Then, too, the patient may not be cooperative.  In some cases the person has to be kept still, lest they make a back injury worse, or fall due to poor balance, or injure themselves.  I'm sure there are other complicating factors I haven't thought of.

To me, though, the hospital's first priority doesn't seem to be the patient's mental wellbeing, but rather their physical wellbeing.  I imagine, in the future, these things will be considered two parts of the same thing, but they aren't at the moment from what I can tell.  As a person with an education in psychology, I don't approve... but as I noted above, I know very little about how or why these systems were developed the way they are.

I expect, when I end up in a hospital, I will have many very annoying questions for the staff.  

Wednesday, April 3, 2019

Legwork and Life, week of 4/3/19

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.

So hey, remember last week's mention of a genetic test I did?  Turns out the results are bad news for my eating habits.  Though not new bad news, I guess.  In essence, I need to be avoiding processed foods like the plague, especially anything "fortified."  This includes basically everything with white flour, because that is almost invariably fortified.  Stop and think about that for a moment.  How much of the grocery store just got put off-limits?  

I'm really, seriously thinking about verbally narrating a trip through each aisle of the grocery store, wherein I mention each category of food and explain why I can't have it.  It'd be a thoroughly depressing experience, but maybe educational?  Not sure.  Maybe it'd be better done as a series of pictures, because I've been underwhelmed by every experience I have of myself on TV or recorded audio.  

Anyway, it won't kill me if I eat these fortified foods, but it will start screwing with me the more I eat.  The offending chemical is "folic acid," which you'll note is normally a healthy thing.  In fact, it's vitamin B-9.  Hence it's in fortified foods.  My particular system simply doesn't digest it properly, so it builds up in my system and does bad things.  The specific bad things vary by the person, but everything from digestive issues to fatigue to depression can result.  

This isn't really a new diet change, as I mentioned.  In general, it's wise to choose whole grains, fruit, and vegetables over TV dinners, mac'n'cheese/quick pastas, and other heat-and-eat options.  But of course, I'm a stressed autistic person with depression and an anxiety disorder.  As such, I'm going to want easy options for meals.  I make do somewhat with leftovers and frozen meals, but sometimes I just want something tasty, hot, and fresh.  Most restaurants are closed to me as well.  

Basically, my eating habits are kind of a mess and it's extra bad for my health compared to other people.  Yay...

In happier news, spring continues to advance.  The pond is entirely unfrozen now, which lets me see the wind rippling the water's surface.  Also, it rained and shredded up the algae-blooms that froze near the surface last year.  You could kind of see those in the heron picture last week.  So hopefully being outside will be a bit safer for a while yet.  Lawn care hasn't started, thankfully.  

I went on a walk Friday of last week, in lieu of my usual exercise.  It was nice, and I enjoyed the sunshine, but it also reminded me of why I prefer biking.  Having the uncertainty of social interaction with every person I pass is extremely uncomfortable.  I tried to be friendly to the two older dark-skinned ladies in ethnic garb out of general goodwill, but the awkwardness made me so anxious that I couldn't meet the eyes of the next three people I passed.  On a bike, I'd simply summon a polite/friendly smile for each and be gone almost before they'd even had time to register it.  My bike's in the shop, but hopefully tomorrow it'll be available for pickup.  

I did locate some cattails, though.  I have a friend who's interested in foraging, and apparently cattails are edible when they're young.  Also, you can harvest the pollen as flour.  So that's weird, but also kind of cool.  This is a smaller stand of them, but there's a much larger stand I didn't get a good picture of further down the way.  I'm not sure how much pollen you can really get off a cattail brush, but it'll be interesting to see.  



Monday, April 1, 2019

Reading the Research: "Recovery" from Autism

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 one of those divisive pieces that elicits a different response depending on your definition of autism.  Upon reading this article, some parents might say, "oh... that's disappointing..." because they were hoping that someday their children might be cured/recover from autism.  Meanwhile, people in the neurodiversity community would instead scream "well DUH."  Why such a difference?  

Well, it's in how you understand autism.  To parents, autism is often a thing that encroaches "over" their idea of what their child should be.  It's the gut problems, the depression, the social anxiety, the failure to read social cues, everything "abnormal or bad" about the child.  This can be represented by those pictures of children or people behind clouded glass, such as this one:


The idea is that the "normal" child is trapped behind the clouded glass, which represents autism, and you have to try to get through the glass to recover and reach the child.  Reading this article, then, to some parents would be both encouraging (because the child can cease qualifying for the autism diagnosis) but also disappointing (because problems often remain).

Autistic adults and people in the neurodiversity community reject this view of autism, often rather vehemently.  The reason is a fundamental difference in definitions.  Autism is not everything abnormal and/or bad about them, to these people, but part of their identity, and as such, declaring it a disease to be wiped out is rather insulting.  Autism instead is the differences in the brain and perspectives that we often have.  It's what makes us such interesting people, and lets us solve problems in such unusual and creative ways.

So, such a person, reading this article, would say "Well DUH," because to them, merely being disqualified from the formal autism definition doesn't make you not autistic.  Your unique perspective and unusual ways of thinking, and perhaps difficulties reading social cues, sensory processing differences, and other differences, remain.  So sure, some kids might cease to qualify for the formal diagnosis, but they don't stop being autistic to neurodiversity proponents.  They just stop being as disabled.  Which is great!  But not exactly what many parents want.

As an autistic adult who has many supports and has had much help in the adult years, I can safely say that I am much less disabled than I used to be.  I'm doubtful I would still qualify for my autism diagnosis, though I have no real desire to find out.  The key with the formal diagnosis is that there has to be a certain level of impairment, and the fact that I manage a small social life and a spouse suggests strongly to me that I wouldn't count any more.

That does not, to my experience, magically make me neurotypical.  I am not "cured."  I am still autistic, still an alien in a world not made for me or people like me.  I still think in strange ways and do things differently than other people.  I still phrase ideas in ways that confuse most people.

I am, however, coping with that reality far better than I have in the past.  I have much better self-care skills and social perception skills.  I have a small but perceptually adequate support network.  My nutrition and exercise habits are much better than they were in my childhood.  As a result, I am healthier and my overall mood is better than it has ever been in the last 15 years.  Maybe even 20 years.

I don't entirely identify as a proponent of the neurodiversity movement, because I recognize some validity in the typical parental outlook on autism, as well as the scientific/professional outlook on it.  But I think it's fair to say I share some views with the neurodiversity ideals.  This is one.  I am, and always will be, autistic.  Autism is not merely a diagnosis code in the psychological manual of diagnoses, it is a difference in brain connectivity, outlook and personality, and general behavior and understanding of things.  It is an identity, not a disease.  I am not cured, I never will be, and I do not want to be.

(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.)