Friday, May 17, 2019

WYR: Automated Phone Prompts

https://miatblog.org/2019/03/communication-frustration-and-assistive-technology/

I'm going to go on the record and say I really, really prefer to have the option to press buttons when navigating an automated phone line.  I have no documented verbal tics, stuttering, or any other form of diagnosed speaking difficulty.  I do kind of slur my words together, which I'm sure doesn't help people or machines understand me, but it has absolutely nothing on actual speech impediments.

Speech and language issues are common in autistic people, and that's even before you mix in things like cerebral palsy and Tourette syndrome.  It's patently obvious why multiple input options are necessary, given this slice of life article and those facts.  You shouldn't have to struggle to articulate the word "haircut" when it's simple to provide the additional option to press 1.  Ideally, both verbal and button-pushing options would be available in an automated phone line like this.  It's worth noting that you can sometimes go directly to a live person by pressing 0, but that doesn't always work. 

Honestly, a lot of these kinds of accommodations are good for everyone.  I find speaking to a phone tree mentally exhausting, and much prefer to press buttons.  It gets orders of magnitude more exhausting when you have to fight to be understood at each step of the process.  Which is why I'm glad there are websites like this one, which try to present workarounds and assistive technologies.  It's not the same as making a world built for everyone, but it's a start. 

I've actually used text-to-speech apps in the past, so I could converse with dental assistants.  They have this tendency to try to hold a conversation while shoving fingers in my mouth.  That makes it kind of hard to keep up my end of it, but with my tablet in hand, I merely need to turn up the volume and hold it so I can see what I'm typing.  Problem solved, don't need my lips or tongue to communicate any more.  They never sound quite right (though that's changing!), but it's far better to have that method of communication than to be barred from it. 

Mostly, in linking you to this article, I want you to really think about what it'd be like to live Rachel Dancy's life.  I feel that, after maybe a dozen interactions with some people with cerebral palsy, I'm maybe starting to understand little bit.  The two women I spent time with needed plastic straws to drink safely.  Because of their muscular issues, holding a glass, tipping it just the right amount, and swallowing at the right time is nearly impossible.

Both women had slightly different "accents" due to their cerebral palsy, and required a certain amount of concentration and time to understand and communicate with.  Every thought they chose to express took at least twice as long for them to verbalize than it would for someone else.  In this fast-paced world, it must be very common for people to become impatient and snippy with you, even though you're trying your best.  You can see this impatience in the salon person's response to Rachel's stuttering, and in Rachel's decision to tell the phone system "manicure" instead of continuing the struggle with saying the word "haircut." 

Kind of sobering for someone like me, who takes their speech capabilities for granted most of the time.  But a very real situation for many people.  These fellow humans deserve as much attention as I do, if not more.  

Wednesday, May 15, 2019

Legwork and Life, week of 5/15/19

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 don't think the crow garlic experiment is going to work out.  I've moved the pots around a bunch, and have kept both of them watered, but they just don't seem happy.  I don't really like being the source of any living creature's suffering, so I'll probably harvest what I can from them and then not replace them.  As far as I know, plants don't suffer pain in a way we recognize, but that's no reason to prolong the experience.  

There are probably a number of reasons this experiment didn't work, from not having the right pot, to soil type, to how I transported them, to the spot I tried to grow them.  I really don't have a green thumb, and so much of this was done with my best guesses.  And they really were guesses, because I have basically no intuition for this sort of thing.  People, yes.  Plants, no.  

That is, I suppose, one of the nice things about being an adult.  I can, if I wish to devote the effort, go to the local library and find reading materials on how to develop a green thumb.  There are even classes and programs I might sign up to attend, for small fees.  At my current age, I'm likely to live at least another couple decades.  If I spent roughly 20 years developing my intuition regarding people and human-built systems, I could probably spend another 20 developing intuition around the natural world and plants.  

I don't know if I want to devote myself quite that much to a skill set I'm not fascinated in.  But it's definitely a subject upon which much has been written.  For the time being, I'll simply have to make regular trips out to the trail for my crow garlic butter biscuits.  

My spouse is away for few days, and all the extra "me time" has gotten me interested in seeing how I handle all that extra time.  So far I've been able to sleep in as long as I wanted, spent extra time doing frivolous things, listened to a metric ton of podcasts, flatly failed to cook proper meals for myself, and cleaned up various places so they annoy me less.  Kind of a mixed bag, I guess.  

I don't expect to end up playing video games all day and subsisting on only junk food, to be honest, but it remains to be seen, I suppose.  Well, except for the part where I did write this blog post on time.  

Monday, May 13, 2019

Reading the Research: Simulation Neurons

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 notes a new type of neuron found in the human brain.  The researchers termed these "simulation neurons."  The idea being that a person uses them to create a mental model of another person's thoughts and feelings, in order to predict what decisions they might make.  The researchers suggest that if these neurons were inhibited (or missing), the person might not be able to do as well in social situations, and might not learn social information as easily.  

So, on surface inspection, this article kind of looks like another "autistic people don't have empathy" assertion.  Particularly with the "autistic people might be missing these neurons!" thing they kind of throw in.  I'm always a little touchy about suggestions like that, because to me they suggest autistic people are sub-human.  Autistic people sometimes show reduced recognizeable empathy, which may be explained by lacking these neurons, and because empathy is an important human trait, we're therefore less than human.  

Given my particular therapeutic history (several years of neurofeedback, which improved my social cognition and ability to express myself socially), I'm more inclined to say the neurons are all there, but are having difficulty doing their jobs.  Brains have a hard time functioning when they're overwhelmed with stress, poor nutrition, sensory overload, and unreasonable expectations.  With all those demands, it can be really hard for an autistic person to properly recognize a situation meriting empathy.  And that's assuming we'd have the same emotional response most people would in that situation... which is not always the case.  

(I trust I don't need to remind you that yes, autistic people do have empathy.  I personally have empathy, to the point that it's rather painful.)

On a more personal note regarding these specific neurons... I get the feeling that if you put a brain scanner on me as I talked with people or went through my errands, you'd see these neurons go nuts.  I spend a lot of time putting together mental models of people and systems so that I can work with them without unduly upsetting them.  That's actually how I can seem so "normal" when having a conversation with people.  I try to quickly construct a sense of the person, what they want, and how I can best deal with them in a mutually satisfactory way.  

It's kind of exhausting, honestly, because I do a good amount of it consciously.  I suspect, given the descriptions here, that most people do this mostly automatically.  Still, it's a useful skill/ability, and I'm not going to complain about having it.  I'm not sure it's as simple as "I have this skill, which I use a lot, therefore social anxiety" the way the article suggests is 100% accurate, but it might reduce down to that.  Maybe.  

(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, May 10, 2019

Podcast Review: The Problem With the Solution

https://www.npr.org/programs/invisibilia/483855073/the-problem-with-the-solution

I've been listening to non-comedy podcasts for a few months, but this is the first one that's been relevant to this blog.  So, exciting!  I'm hopeful that as I find more disability-relevant podcasts, this will happen more often.

This podcast, Invisibilia, is about the invisible forces that shape culture: ideas, beliefs, assumptions, and emotions.  I studied psychology in college, so no surprise I was interested in this particular podcast.  The show tends to try to humanize its subject, showing different ways to look at a subject through the lens of true stories.

This particular episode is on mental illness, which you'll note tends to occur alongside autism due to the stresses of an unaccepting society, as well as biological and neural weirdnesses.  There are a lot of causes of mental illness, and none are the person's own fault.

The going philosophy on mental illness is that it needs to be "fixed."  This is because in many cases, the symptoms of mental illness are harmful or extremely unusual.  And the show starts out by noting, in a humorous fashion, that it's the US mentality to find solutions to things.

As the episode goes on, though, it suggests a different idea for how to think about mental illness.  It's the kind of philosophy that can be taken too far, but aligns very impressively with the general autistic self-advocacy opinion that people should accept, not shun, differences.

I don't want to spoil the episode too much, so give it a listen while you're doing chores or driving somewhere!  I really enjoyed it, even getting teary-eyed near the end.  

Wednesday, May 8, 2019

Legwork and Life, week of 5/8/19

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.

The transplanted field garlic is still alive!  Though it's not entirely happy.  I have two pots, and have moved one to an even shadier location on the offchance that makes it happier.  It's been trying to perk up a little during the rainier weather, but yesterday it got sad again when there was more sunshine.  So I'm not really sure what the deal is, but neither pot is dead yet.  So the experiment continues, and I have yet to harvest from either pot so they have the best chance of survival.  

I kind of wish I had a third test pot to try growing indoors, which... I guess nothing but the trip out to where they grow is stopping me. I technically already have a pot, it's just small.  So I'd need to find a smaller clump of field garlic.  And then make sure I remember to water it.  ...If I'm being honest with myself, this third pot would probably die the fastest unless I make reminders for myself.  

It's funny because there aren't really guides to this sort of thing.  Allium vineale (field garlic, or crow garlic) is very definitely an invasive weed.  It's edible, like many invasive species (that's why it was brought here).  But people haven't tried to cultivate them for quite a while, so the Internet doesn't seem to have anything on the subject.  I'm just trying to replicate the conditions I found them in, sans the competition with other plants for the soil. 

Related to foraging and wild plants, my friend has lent me her favorite foraging book!  So I'm going to read that and try to get better at spotting other plants besides crow garlic, dandelions, and cattails.  Speaking of cattails, they've just started to sprout, so we went to a local area and harvested a couple for practice.  The area is a drainage ditch, and cattails soak up heavy metals like nobody's business, so we won't be eating the sprouts.  Still, it was a cool experience. 

Going a bit further back in the week, it was my spouse's birthday.  My parents took us both out for dinner on the day of, and then on Saturday I'd planned a day-on-the-town kind of excursion.  We played arcade games at Dave and Busters, ate lunch at a restaurant, saw a movie, went for ice cream (sorbet for him) afterwards, and then had dinner.  All this meant the vast majority of the day was spent celebrating him, which he seemed to enjoy. 

It was a fun for me too, but I stressed pretty hard coming up with the stops on the excursion, and made it extra difficult on myself by having everything be a surprise for him.  We share calendars, so I couldn't just plan the events in a nice, neat, easily-referenceable order.  Next year, I'll look into whether I can set events to private or hidden or something. 

Either way, it's been a good week, I guess. 

Monday, May 6, 2019

Reading the Research: Second 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 is a little gross to think about, but I wouldn't be surprised if it becomes a normal treatment in the future.  There's been increasing amounts of research into the effect of the intestinal tract on the brain.  Including, in fact, the discovery that there are neurons in there.  A whole lot of neurons.  Enough neurons to allow for an enthusiastic person to insist that the gut includes a second brain.  

I've harped on this sort of thing before, though not in those exact words.  Regular readers may remember I take probiotics in addition to various nutritional supplements.  They do help my mood, and when I've abused my gut by feeding it too much sugar, I can tell it's affecting me.  I have a really hard time eating a low sugar diet, though.  

So like many studies I've posted, this one has a definition problem.  What one team of researchers accepts as "autism" might to others simply be social disability due to stressors on the body and brain.  If your gut isn't properly digesting your food, you may not receive proper nutrition even if you're eating very well.  As a result, your brain won't function at its highest capacity, and things like noise, touch, and social expectations will exhaust you more quickly.  

Looking at their choice of research participants, I'm really not surprised they achieved such high results.  Each chosen participant had gut issues from infancy.  Doing a fecal transplant from a healthy human's gut bacteria would re-establish a healthy gut in the participant, which would allow them to receive proper nutrition and filter out toxins better.  With those important things handled, the brain would of course be free to handle the demands of life better, which leads, in this context, to being called "less severely autistic."  I imagine the results wouldn't be quite so impressive if they were merely done on a cross-section of autistic people.  Still, it's a promising lead for at least one group of autistic people.  

(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, May 3, 2019

WYR: Running Away for a Reason

http://www.thinkingautismguide.com/2019/04/running-away-autism-and-elopement.html

I'm going to be interested to see comments on this post.  This touches on a part of life I was never involved in.  I was never a wandering child.  My parents were spared the anxiety-inducing searches for me, because my comfort was indoors.  Away from the crawling bugs, biting mosquitoes, and the cold, clutching a favorite book in my own room, I was content.  Outside was not my friend. 

If it had been, though... if I was less sensitive to the brush of greenery, the chill of outdoor air, and the crawling of insects?  Perhaps I might have been a child that ran away. 

I'm curious to see what comments show up on this post, because it's such a common behavior.  I want to know if "escape and control of environment" is always the reason for wandering, or if there are complicating factors.  It's a people-related issue, so I'd guess there are complicating factors.  Still, if this is a major reason for wandering... that would make it a lot easier to improve everyone's lives.  Find what's distressing the autistic person, and change it.  Immediate effect: less distress and thus less wandering.  Surely everyone could agree that would be excellent.

As I was reading this article, I was reminded of a web game I played and reviewed years ago.  I no longer doubt that the ability to jump the playground fence and leave the area was put into the game on accident.  Rather, I'm surprised it wasn't more clearly marked.  Reading this post reminded me strongly of that experience.  That was what they were going for, no doubt... I simply didn't understand fully at the time.