Legwork and Life, week of 1/30/19

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.

Wellp.  This week included getting snowed into my house, and also taking apart my work/home computer in order to find out why it wasn\’t starting up.  So it was, um, slightly more interesting than I prefer.  I also got my hair re-dyed and attended a lecture on Gender, Sex, and Sexuality.  

The lecture was a very basic sort, but as it was held at a church, I showed up to both give support and make sure they didn\’t, um… teach something regrettable, shall we say.  But they had it right: the basic message of the Bible is love.  Regardless of whether you understand or have anything in common with any given person, the Bible calls us to love them.  So the rest of the talk was basically explaining the terminology and spectrums involved in these discussions.  I did a piece on some of this back in 2016.  

The weather in my state finally remembered what latitude it\’s located at, and has proceeded to snow properly for the first time this winter.  By properly, I mean \”there\’s over a foot of snow on the ground and it\’s still snowing hard.\”  This would be excessive for many places I\’ve lived, but not this one.  Fortunately, my spouse pretty much stayed home during the worst of it, and my job doesn\’t involve leaving the house at regular intervals.  

And a good thing, too, because the road basically looks like this, too.  

It does involve having a working computer, though!  So when my computer broke, I was understandably kind of upset.  I don\’t just use my home computer for work, either.  It\’s also my main source of leisure activities, particularly while the weather is cold and gross.  The day it broke, last Friday, was the day I was scheduled to play group content in my online video game with my spouse and like 14 other people.  Everyone\’s needed, so not being there would have been troublesome.  

Now, I took a PC Repair class in high school, the very first year it was offered.  So I have a bit more background in this sort of thing than I would have otherwise.  It also happens that my spouse has some background in that area as well.  So I ended up finding a grounding mat and opening my computer case.  (You never want to tinker with the insides of a computer without making sure you don\’t have static electricity on you.  You can destroy computer parts like that, so you normally use a grounding strap.)

I was fortunate in this particular case: the malfunction my computer was experiencing was such that I was simply able to unplug and examine computer parts until I found the malfunctioning one.  I started with the RAM, as that\’s often the first thing to break in a computer anyway.  But pulling out first one, then the other, then both sticks at the same time, did nothing to help the situation.  So that wasn\’t it.  

Next I ruled out the hard drives, disconnecting them one at a time.  It changed nothing, unsurprisingly.  The point at which the computer failed in startup shouldn\’t have been accessing them anyway, but it was good to know for sure that they were clearly not the issue.  The computer had sufficient power, so the power supply wasn\’t the issue either.  After that, I disconnected the graphics card and rerouted my computer screen through the motherboard… which still didn\’t solve the problem.  

That unfortunately left two hard-to-test parts: the motherboard and the CPU.  The CPU, at least, I could look at to see if maybe something was visibly off about it… so I did, and found this: 

See the pretty patterning?  That is definitely not supposed to be there.

So it turns out the thermal paste, which helps transfer the heat off the CPU so it doesn\’t overheat and start melting your computer, was partially dried out.  The computer was refusing to start past a certain point so it wouldn\’t start melting itself.  Using some of my spouse\’s computer repair supplies, I was able to clean off the CPU and its components and reapply fresh thermal paste, then put everything back together.  The computer worked, and in time for me to get some work done and attend that group event in my computer game, too.  

I kind of wish more problems in life could be solved by simply removing and inspecting parts until you find the broken bit.  But you can\’t do that so quickly and easily in, say, a malfunctioning group setting.  My graphics card, in my computer, has no ego and no feelings and therefore does not care if I circumvent it to check if it\’s the cause of the malfunction.  

But if my graphics card were a human being, it would probably have choice words to say about my decision to remove it from the computer.  Perhaps it would point fingers at the RAM, or have Opinions about the power supply\’s performance.  Maybe it would even refuse to leave the computer, thus hindering the diagnostic process.  Maybe all the computer parts would have a hierarchy, and some parts would feel left out.  

People are so messy and complicated.  For all the time I spent in high school and college studying psychology and trying to figure them out, I\’m very grateful that some problems in life don\’t involve people.  It\’s nice to just take logical step after logical step, and solve a problem without having to make those calculations.  

Reading the Research: Empathy in Eye Movements and Text

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.

Once more, for the people in the back: yes, autistic people do have empathy.  Today\’s article is one more study showing this fact.  The researchers used imaginary scenarios written in text, quizzing both autistic and neurotypical adults on how the characters were likely to be feeling in the stories.  To my complete lack of surprise, the autistic adults scored equally, sometimes better, than their neurotypical peers.  

The idea that autistic people don\’t have empathy was one I heard relatively soon after my diagnosis.  I was, um… not impressed, with the idea.  The originator seems to be the researcher Simon Baren-Cohen, whose work includes such gems as autism being an \”extreme male brain\” issue, and this idea of \”mind blindness,\” or lack of empathy.  Perhaps you can guess I\’m not terribly thrilled with his line of work or his assumptions.  

I ran across this article, which discusses the author\’s theory of two categories of empathy.  I\’m inclined to say their impression, that autistic people might have difficulty with shallow empathy but be entirely unhindered in deep empathy, might be about right.  But not for the reasons Baren-Cohen or possibly even this author, think.

Assume, for a moment, that you go to visit another culture.  You see people doing things according to their customs, but you have no idea what those customs are.  You see people being happy or sad, but because you don\’t understand the context, you only see their emotions.  Would you score terribly well on a test asking you to explain why those people are happy or sad?  

This, I think, is why autistic adults can and often do display high amounts of altruistic behavior, compassion, and concern for others… yet can be accused of being tactless or thoughtless.  It\’s not that we don\’t have the shallow empathy or somehow lack the capacity to have it, it\’s that we\’re naturally very very different in our thought processes.

Humans tend to treat other people with the assumption that they\’re just like us.  For neurotypical people, that can be a safe assumption.  For autistic people, it often isn\’t.  An autistic person, when asking if their clothes look good, may desire an honest answer.  A neurotypical person, asking the question, may have already decided they look good and just desires agreement or is fishing for compliments.  If either person gives the other their personally desired response, hurt feelings and misunderstandings may occur.

This is complicated by the fact that autistic people may have face-blindness or simply difficulty processing faces, postures, and other emotional \”tells.\”  So a neurotypical person may be clearly projecting their sadness, anger, or pain, but due to missing those cues, the autistic person may not recognize that emotional state, and therefore cause further upset.  Again, not from lack of empathy or ability to empathize, but because of the difficulty in perceptual processing.

Another complication is personal suffering.  Autistic people have higher rates of depression, anxiety, sensory sensitivities, chronic pain, epilepsy, and other life-complications than neurotypical people.  If you\’re already struggling to make it through life, you\’re going to have a harder time noticing or doing anything about other peoples\’ emotions.  That\’s true for any person, anywhere. 

Personally?  I found out in the last two years that one of my friends from college had assumed I had no empathy, right up to the day she told me.  That was both flabbergasting and kind of hurtful.  I had done many empathy-spurred actions in her presence, during college and afterwards.  I wasn\’t the most in-tune, thoughtful friend in college, but I did and still do have a functioning empathy sense.  I took actions to ease the lives of the people around me.  If someone near me was sad or anxious, I noted it and, if I couldn\’t help, at least I tried not to make it worse.

But that friend, she spent at least 7 years believing I had no empathy.  She is neither stupid nor evil.  She\’s actually a pretty cool, fun, interesting person, and having that belief was really out of character for her. But that\’s the power of authorities saying \”autistic people don\’t have empathy.\”  It makes people stop thinking.

I don\’t claim to be amazing at social interactions and emotional perception, but I will contend I have empathy \’til I\’m blue in the face, thank you.  I think my parents will agree, as would my spouse and my friends (including the mistaken one, now).  And I think it\’s true for any autistic person.  Some of us just have a harder time expressing it, or seeing opportunities to express it.

It\’s a tough world full of people that don\’t make sense.  We are still fully human, though.  Like one of those Intel stickers, each autistic person comes with a little invisible sticker that says \”Empathy inside.\”


(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.)

Communication Methods: An Autistic Comparison

Posted on by Realistic Autistic
I had the misfortune recently of being trapped handling a complex socio-emotional problem via phone.  That single conversation drained my entire store of energy for the entire weekend, which was, needless to say, not ideal.  Once I\’d recovered, I got to thinking about the various kinds of communication methods we have available to us in the modern day, and decided I might as well compare and contrast them.

We\’ll tackle these from most intensive to least intensive, for ease of understanding.

Face-to-face communication

This is the obvious and most socially-approved form of communication.  It can be as quick or as slow as either party wants it to be, though it\’s usually on the quicker side, as a response from one side usually demands a near-immediate response from the other side.  
It is also the form of communcation that\’s least convenient for the schedule and most effortful in terms of information processing.  Autistic people often stick rigorously to our schedules, so having an interaction like this can range between being tolerable (because it was planned) or completely intolerable (because it wasn\’t).  
There are many forms of unplanned face-to-face interactions in life.  Nobody that I know of goes to a grocery store with the intent to make small talk with people in line.  That just sort of happens.  You can try to avoid chatting with the employee at the checkout line by using the self-checkout machines, but you may not escape being mistaken for an employee while in the store, and thus being asked for the location of some product.  
These unplanned interactions can be very upsetting and anxiety-inducing.  I sometimes have to pull out my little container of solid perfume and take a good whiff to temporarily banish the effects of such interactions.  However, short of hiding in a private space all day, every day, they are inevitable.  Alas for our sanity.  
When spending time with a person directly, you deal with the full range of information they present in real time.  This includes things like:
  • the set of their shoulders and overall posture
  • their facial expression (there are 43 muscles in the face, and minute changes in a few of them make the difference between anger and surprise, or concentration and frustration)
  • what they\’re doing with their hands, arms, and legs (crossed arms- angry or chilly? fidgeting with their fingers- nervous, also autistic, or bored with the conversation?)
  • the amount of eye contact they give you
These are in addition to factors that other forms of communication make you process as well, such as word choice and tone of voice.  All of these pieces of information must be juggled in real time, even as you attempt to project the correct combinations of all those things back to the other person and choose appropriate verbal responses.  Most neurotypical people handle all these factors without having to think about them.  That must be nice.  
The thing that really sets face-to-face interaction apart from every other type I\’ll talk about here, though, is the fact that, at any point, your sense of smell or touch can disrupt your concentration.  At a whim, your personal space can be invaded, and your senses overwhelmed by a single touch of the arm, or a light hug.  The person may be wearing perfume, possess bad breath, or you may be walking by a scented candle store.  
While some autistic people crave sensations like these, others experience them so strongly that their concentration is destroyed.  Even assuming the autistic person was handling the high demands of the in-person interaction, adding in even a faint odor or an unexpected touch can cause the whole thing to become impossible to handle.  Environmental noise, such as small children crying, can have this effect on me.  As I\’ve aged, I\’ve mostly become more graceful about handling it.  Mostly.

Skype/Facetime/video phone calls

We have now entered the realm of not-quite-immediate communication.  Unless both of your devices have excellent connections, any electronic communication involves a certain amount of micro-delay.  This can be confusing and cause miscommunications, such as two people starting to talk at the same time even though they\’ve both learned how to take turns speaking.  This can be anxiety-provoking for autistic people.
Video phone calls still involve analyzing and projecting all the visual and audio data that in-person interactions do, but with the added complication that you may not be able to see the whole of the person and their environment.  But they also allow you to set your own environment, such as \”from the comfort of your living room\” or \”in the smaller, quieter conference room at work.\”  This can go a long way toward making an autistic person more comfortable, but many people will still struggle with the demands of processing and projecting so much visual information.  
Autistic people may have trouble projecting appropriate facial expressions, for example.  I tended to be rather stonefaced, into young adulthood.  If I wasn\’t looking stonefaced, I was probably looking angry, because I was also a rather angry child (with good reason, mind).  As such, people tended to have difficulty reading me, and came to conclusions that were often erroneous.  This included my own father, which did not help our relationship at all during those years.

To make things more confusing, an autistic person may focus so hard on projecting one facet, like facial expression, that the others fall by the wayside.  So their face might be set in the almost-smile that\’s correct for a casual friendly conversation, but their posture might scream \”discomfort.\”  Or their tone of voice and word choice might say, \”I am cautiously positive about this idea\” in a business meeting, but their arms are crossed and their face is blank, which conveys the opposite.

The only innately positive thing that comes to mind when considering these intensive forms of communication is this: there are so many social cues involved, that even if you miss more than half of them, you might still get the gist.

Phone calls/voice services

Buckle up, this is my very least favorite form of communication.  Generally if I have to be on the phone, I am wishing myself dead when I\’m not immediately handling the conversation at hand.  Sometimes I can even multitask and wish myself dead while handling the conversation at hand.

Why?  Well, for me, phone calls straddle the line between face-to-face communication (too much info, but at least I can miss some things and still get the gist) and text messages (where all you have to deal with are the words).  And they do so in the worst way.

You have the person\’s tone of voice, which you need to process, but you do so without the benefit of seeing their face.  Is that a bored tone of voice, or are they simply tired?  You don\’t know for sure.  Maybe you would if you could see their face (also bored, or perhaps puffy-eyed from lack of sleep), or see their posture (rubbing their eyes, or crossed arms because of annoyance?).  I spend a lot of time trying to process that information, guessing and second-guessing, while trying to relay whatever opinions, directions, or information the other person needs.

Their environment is even more of a mystery to you than with video calls.  Beyond audio cues (crying children, raucous music, or perhaps road sounds like car horns), you really have no idea what\’s going on with the person and their life during this conversation.  If that information is needed, it must be either intuited via those cues or communicated verbally.  This can lead to having a sensitive conversation in the middle of a public hallway, with no easy way to escape somewhere safer, which is really not ideal.  And even worse, the other party may have literally no idea that is the case, and thus unknowingly subject you to a great deal of stress and embarrassment.

The other main reason I think I hate phone calls so much, though, is that they\’re extremely disruptive.  Unless I set it to Do Not Disturb (which is not a good idea in case of emergencies), I can expect my phone to go off with no thought for my concentration, the importance of what I\’m doing, or the difficulty of my day.  The person (if it\’s not a robo-caller) on the other end usually has no idea how I\’m doing, or what I\’m doing.  And they may not care, either.

I deeply resent things that demand my entire attention, regardless of my current circumstances.  I dislike being linked to online videos and being expected to watch them immediately for the same reason.

The last reason I hate phone calls and other voice services, I suppose, is the context in which I\’ve most often had to use them: calling on health insurance issues, contacting doctor\’s offices, setting car repair appointments, rescheduling a disrupted day as quickly as possible with the other affected parties, and managing money-related issues.  I dislike doing literally everything on that list.  All of it is necessary, but none of it is enjoyable.

So basically, please never call me unless you literally have no other option.  See below for better options.  Thank you.

Text messages/Instant messaging

We are now entering more friendly territory for many autistic people, especially me.  This is the best method to use when contacting me.  Examples of this type of communication include text messages on your phone, Gtalk, Facebook Messenger, iMessage (iOS), WhatsApp, and Discord.  There are many more.

Text messages and other forms of instant messaging require careful word choice to get your point across, but are very forgiving in terms of information processing.  As the receiver, you are required to read the words, and consider the context in which those words came to you.  Perhaps the sender will also have helped you out by providing emojis/emoticons to set a particular mood associated with their words.

The environment that each participant experiences is still a mystery, but because there is no plain way the participants could know each others\’ environments, any reasonable communicator assumes the other doesn\’t know that information, and acts accordingly.  If it\’s relevant, it must be communicated.  If it\’s not, the conversation excludes any assumption of that knowledge.  For example, if you\’re aware of the fatality rate for texting and driving, and someone texts you, you might text them back: \”Driving, gimme 5 min.\”  That person will then know it is unsafe to continue the conversation, and await your response that it\’s safe.

Tone of voice, posture, circumstances, are all irrelevant unless communicated within the conversation.  This, to me, is freeing.  If the person wants me to understand a thing, they have to say it.  They can\’t just rely on the use of magical mind-reading abilities (social intuition) that neurotypical people develop and use in the previous forms of communication.  Text messages level that playing field and make it so you have to mean what you say and say what you mean.  If you don\’t, that\’s on you, and you\’re being a poor communicator.

The other nice thing about this form of communication is that you can look back at what was said.  In verbal, video, and in-person forms of communication, there is the frequent tendency to fall into \”he said, she said\” interpretations of what was said.  No one save some very gifted people can remember every word that\’s said in a conversation.  Instead, most people remember how they felt about what was said, how they interpreted what was said, and perhaps the precise wording for something particularly important or interesting.

But when it comes to, say, a task list, an important discussion with your spouse about the relationship, or important insurance information, having the possibility for fuzziness and \”he said, she said\” is disastrous.  You may lose essential information, and both parties may think they got their points across, but neither side understood the other.  With the ability to look back at the chat log, you can reference what was said, and ask for clarification as needed.  This is great for assuaging anxiety and ensuring correctness of action and understanding.

Also great for assuaging anxiety, the conversation can be a quick back and forth affair, like an in person conversation, or a more relaxed \”1 message every hour when you\’re available\” interaction, for conversations that aren\’t time-sensitive.  Or anything in between.  Instant messages let you find a stopping point in what you\’re doing, and then give the other person your full attention, rather than demanding you drop everything the instant the person rings and then suffer being distracted through the entire conversation.

Email

We now reach the slowest of modern forms of communication.  While emails can be relayed near-instantly, there is much less of an expectation of an immediate response.  This can be a great kindness to autistic people and people with high anxiety, because it gives you even more leeway about when and where you respond.  
You have time to research a topic if you don\’t feel sufficiently knowledgeable.  You have time to consider your own response and word choice more than once or twice, and come up with multiple plans of action.  You even have time to ask someone else\’s advice on a subject if you don\’t like the responses you\’ve come up with.  
Like text messages, email is referenceable.  This is particularly good because email conversations may span hours, days, or even weeks.  Email is also nice because it\’s all containable boxes.  You can have a single email address to handle all your communication needs, or you can have several, one for business things, one for personal emails, one for spam and stuff you don\’t actually want to look at, etc.

Also like text messages, your ability to read posture, facial expression, and tone of voice is entirely irrelevant.  You do still have to read the tone of the email, which is kind of like tone of voice.  But I personally find it much easier to handle.  Your experience may vary. 

Snail Mail/ the postal service

Notable mention goes to Snail Mail, or the postal service.  While it\’s rare to have actual meaningful correspondences in this day and age, I\’m old enough to remember when that people routinely sent each other handwritten letters.  (Note to anyone younger than 25 reading: Yes, this was a thing.  Yes, I am ancient.  Get off my lawn. 😛 )  
Usually snail mail these days is merely junk mail, bills, form letters, and possibly the occasional newsletter.  Actual personalized communication is rare in snail mail these days.  You might still see greeting cards around Christmas or your birthday, or perhaps post cards from traveling relatives or friends.  The vast majority of this form of communication, however, is not personalized and meaningful. 
I believe some people still have pen pals, or people they write to on a regular basis using physical sheets of paper, envelopes, and stamps.  In some cases, those people are from other countries, or live in remote areas.  It\’s kind of a cool thing, putting that much effort into communicating with someone, but something I never really got into.  In part, this is because my handwriting is atrocious.  
I was taught cursive in elementary school, and even learned a bit of calligraphy in middle school.  However, my hand-eye coordination and fine motor skills aren\’t amazing, and handwriting isn\’t really a skill that has much use in modern life.  It\’s so much faster and easier for me to put my words through a keyboard, rather than struggle to express them via pen or pencil.  Between those factors, my handwriting will likely never improve, and so, at least for me, this style of communication will continue to be almost entirely ignored.  

Legwork and Life: week of 1/23/19

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.

Y\’know how last week I mentioned I wasn\’t sleeping well?  I have introduced a new and exciting way to be awake.  In fact, I am now so awake most of the time I find it hard to gauge my tiredness.  I\’m very impressed.  Not entirely positively.  

The cause of all this is an older model HappyLight.  While the models on the website provide 10,000 lux, this one only provides 4,500… but that seems more than sufficient.  And while the box recommends use up to an hour, I am only using the silly thing for 20 minutes out of a whole day… and still having this \”I am VERY AWAKE\” effect.  

I do still find myself yawning through activities that don\’t require my entire attention, which is discomfiting and makes me feel rude.  But I was doing that before, and my overall level of sleepiness versus awakeness is very much toward the latter.  I can\’t really decide if, after a week of use, I really feel better, or just more awake.  It\’s disquieting to not be able to easily judge how tired I am.  Case in point, I don\’t have enough sleep this morning and I\’m still quite awake and feel quite unable to take a nap.

My actual capabilities in terms of nap-taking are unknown, though.  I do still seem to fall asleep at night in a reasonable time, despite just… not feeling tired.  That lack of feeling-tired-ness hinders me in gauging whether I could benefit from a nap, so I mostly haven\’t tried.

In other news, I went to a lecture by a local professor (and parent of an autistic teenager) regarding representations of autism in the media.  This is a facet of the autism world I\’m nearly illiterate in, so I really didn\’t want to miss it.  Unsurprisingly, I found I have a lot to learn yet.  I haven\’t, for example, seen Rain Man, which was the movie that put autism on the public radar in the first place.  I haven\’t read any of the books he presented on.  

It\’s humbling that even after all this reading I\’ve done, I still have so much to learn.  I think I\’ve been keeping my fiction (pleasure) reading and my autism-education (work) reading separate on purpose, to avoid bleed between the two.  Professor Rozema, on the other hand, has kind of merged those two things in pursuit of being a better parent.  More power to him, and I\’m really glad.  

I found the lecture itself enlightening, if a little depressing.  Seems between the tendency to portray autistic people as savants (only 10% of us are savants, actually) and the tendency to only portray us as our autism (only autistic traits, never \”this is a person with traits besides the autistic ones\”), we\’re pretty non-existent out there.  He also pointed out that when autistic people are portrayed, they almost invariably cast neurotypical actors.  Even in cases when the actors then go to great lengths to learn how to portray autistic people, this is undesirable.  It\’s better to hire actual autistic actors for these parts, just like how you shouldn\’t hire white people to play First People or African Americans.  

It was the post-lecture discussion that really wore me out, though.  The person I attended the lecture with kind of threw the spotlight on me during the Q&A, pushing my blog to the crowd of 40+ people.  I made an offhand comment about answering any questions people had from an autistic point of view after everything was over, and several people took me up on that.  All the conversations in question were interesting, and all were worthwhile, but I felt wrung out afterwards.  I suppose I wasn\’t expecting quite so much conversation when I wasn\’t even a presenter.  Maybe if they do this next year, I will be?  Not sure how I get hooked into that.  

Anyway, it was an eventful week between those things and managing the juggling act that is my life.  

Reading the Research: Adult Autistic Difficulties

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 notes in detail that autistic adults without intellectual disabilities don\’t get a free pass to lives without difficulties.  Four non-IQ categories are called out as causing difficulties: theory of mind, knowledge and recognition of emotions, processing speed, and verbal learning and memory.  Autistic adults may have difficulties with any or all of these categories while testing perfectly normal on an IQ test.  

This is where I\’m really tempted to soapbox (again) how unimportant IQ is in terms of being an adult.  But since I did that already, and recently, I\’ll instead point out that some of the language in this article is rather ableist: \”having intact IQ\” is not an appropriate way to refer to a normal or better IQ.  It suggests that people with IQs below a threshold are \”damaged people,\” and denies the basic validity and humanity of people with intellectual disabilities. 

I was going to hope the institution in question was from another country, and therefore a translating failure might have been involved in this word choice, but The Mount Sinai Hospital and School of Medicine is located in New York City… so it\’s probably just ableism.  Ugh.

For those anyone not immediately familiar: a meta-analysis, such as the one here, is when the researchers look up all relevant research to a particular question, like, \”does IQ predict success in autistic adults?\”  They then take all this research and run through it with a fine-toothed comb, checking what kinds of experiments and research were done, what their results were, and what statistical analysis was done.  The end result is something like a more scientific version of asking a dozen wise people for a solution to a particular problem.  Any patterns in results are noted, in hopes of getting a more thorough answer to the question.

Meta-analyses are important because, after the 30th-ish study has been published on a question, it becomes really hard for anyone to remember the results of all of them.  This is particularly true if multiple authors and institutions are involved, which is nearly always the case.

Dehumanizing word choice and type of study aside, the article at least makes the useful point I mentioned above: that there are many kinds of difficulties, and having a high IQ does not save you from them.  The researchers isolated four places autistic adults can have difficulties:

Theory of Mind is the skill of recognizing and attributing different beliefs, wants, skills, knowledge, and intents to yourself and as well as others.  It\’s recognizing and overcoming Human Error #1 (\”everyone is just like me\”).  It\’s recognizing that your friend knows more about a particular subject, or that your spouse can be upset even though you aren\’t.  It\’s important to note that just because a person has theory of mind, doesn\’t mean they\’re immune to Human Error #1.  It\’s #1 for a reason.

Emotional Knowledge and Recognition is more or less what it says on the tin.  Some people, including some autistic people, have trouble putting words to the emotions they\’re feeling.  I like the charts found on this page.  Such people may also have trouble identifying emotions in others.  The difficulty recognizing emotions can be so great that even simple emotions, like anger or fear, might be missed or misnamed, with the person assuming they or the other person is calm.  This can result in very upset people, because basic emotion-reading and expression is an assumed skill in the current time.  

Processing Speed is how fast you understand and can use new information.  This trait is classically associated with low IQ, but I can personally attest that it affects people with higher IQs as well.  Like a computer processor, the faster you can handle incoming information, the easier you can handle situations both old and new.  Having slower processing speeds can make it hard to hold conversations or respond effectively to new information at your job.

Verbal Learning and Memory is how quickly and how well you process verbal directions or instructions.  Many autistic people like to have such instructions written out to circumvent this issue, but in some workplaces and in more freeform interactions, this isn\’t always possible.  Your supervisor or friends may simply expect you to remember the set of directions in order, and then do them.  If you have trouble keeping more than two verbal directions in your head at once, having someone give you 3 or more is going to be a waste.  Asking for directions from a local is the obvious example of this.  (\”Oh, the mall?  Turn right at the T, drive \’til you see the burger joint, go left at the billboard, then left at the bank, and then you\’re there!\”)  

Any and all of these factors can make it difficult to hold a job and interact with other adults successfully.  And all aren\’t part of the \”typical\” understanding of autism. 

(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.)

Book Review: Knowing Why

Posted on by Realistic Autistic
Knowing Why: Adult-Diagnosed Autistic People on Life and Autism, edited by Elizabeth Bartmess, is a set of nine essays by adult autistic people.  It\’s very much a slice of life piece.  Some authors are more philosophical than others, but each incorporates meaningful examples from their lives.  I asked for this book for Christmas, and now that I\’ve read it, I\’m not at all sorry I did.

I was gratified, while reading this book, to note the diversity in the authors and their chosen subjects.  The spectrum is a diverse place, so it behooves books like this to bring that diversity to their pages.  This doesn\’t always happen in many mainstream publishers, but as ASAN published this book, they made a point of including diversity.  And they succeeded.

One of the authors is black, and explains the kinds of complications that identity and appearance can add into a person\’s life.  Another is clearly on the lower end in terms of verbal communication skills.  Some of the authors are from other countries.  Subjects range from burnout to work, and also include personal identity, depression, fighting for quality healthcare, sensory sensitivities, and assistive technology.  All the subjects struck me as highly relevant to my life, and the lives of others.  And each person had good insight on their chosen subjects.

The book is also diverse in the tone of its essays.  Many are hopeful to some degree, but some are more matter-of-fact and neutral, or even tinged with the very depression they\’re writing about.  This, too, is true to life.  I think most people experience both hope and despair in life, and the more complications and difficulties you experience, the harder it is to hold onto hope.  If you reach adulthood without a diagnosis, the chances are excellent that you struggled quite a bit to get there, and experienced a fair bit of despair.  So while I wasn\’t overly happy reading the sadder accounts, they made perfect sense to me.

Actually, that\’s perhaps the most interesting thing to me about the essays in this book.  While the authors of these essays share my diagnosis, in some cases I have few things in common with them.  Yet each and every one of them was able to explain their actions, even ones like \”crawling into the ductwork of their church,\” in such a way that it made perfect sense given their circumstances.  We make sense.

We make sense.  Maybe we aren\’t understandable to other people.  Maybe our actions don\’t fit into the accepted norms.  But they do make sense.

Growing up, I was often told, directly or indirectly, that I didn\’t make sense, that I was wrong, and being a pain in the rear, or just being rude.  I studied and learned from those experiences, shaping myself and my behavior to be \”acceptable,\” but it was never a perfect camouflage.  And reading all these books from frustrated parents of autistic children, it\’s easy to fall into seeing a behavior, like stimming, in one particular way.  Specifically, a very negative way.  A way that assumes there\’s no valid reason to have the behavior, and seeks to stifle it until it dies.  And then people wonder why things get worse instead of better.

So, I guess, if weird autistic behaviors ever confused you, this might be a good book to read.  It makes stuff like that understandable, if you\’re willing to learn.

I loved this book.  It wasn\’t the most cheerful read I\’ve ever had, but it was highly meaningful and relevant.  It presented information and insights I haven\’t seen anywhere else, on subjects that are highly relevant to living with or around autism.  It\’s going on my bookshelf where I\’ll be able to see it and read it again.

Read This Book If

To my great amusement, this book has its own \”read this book if\” section.  It\’s right in the introduction.  It suggests autistic people, people who are wondering if they\’re autistic, \”autistic cousins,\” and family members.  
Personally, I\’d suggest almost anyone read this.  Researchers, educators, friends and family of autistic people can all likely learn a bit from reading this book.  Even I, an autistic advocate, still learned a thing or two from the accounts and thoughts of these authors.  

Legwork and Life, week of 1/16/19

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.

Hello from my computer, where I am frantically rebuilding my buffer.  It\’s funny to me that I was so happy about keeping my buffer goal for 2018, and then within a week ran out of buffer.  Oops.  I guess it\’s not like that\’s catastrophic failure, it\’s just… not great for my sanity.  And life is about learning!  Often from mistakes.  So many mistakes.  

At this very moment, I have a very small buffer again!  I must be getting better at this.  Well, I\’d better be getting better at this, The Realistic Autistic blog has been going for four years.  That\’s longer than my marriage.  Though not as long as I\’ve been dating Chris.  Anyway, presumably I\’m improving my efficiency in consuming blog material, and writing up posts.  

I took my first steps to meeting goal 4 (start an autism-related volunteer or paid job) this week.  I\’ve got a folder with what I\’m calling \”homework,\” tongue-in-cheek.  It\’s a bit of data entry, effectively, for Autism Support of Kent County.  I\’m decent at data entry, though too much of it will either put me into a trance or bore me to tears.  But this has nothing on the massive stack of papers I once dealt with for a different organization, so as long as I don\’t keep looking at it and saying, \”Oh, that\’ll take no time at all, I\’ll do it later,\” it should be done soon.  We\’ll see what else ASK has for me after that. 
I\’m not sleeping super well recently, and feeling less rested when I wake.  It could be sugar intake levels- despite my efforts, there is too much sugar around the house, and I tend to eat it when I see it.  It could be insufficient vitamin D: it\’s winter, and I\’m not going outside.  I haven\’t upped my dosage back to two capsules a day, and I probably should.  But I\’m inclined to think it\’s an option 3, because I always seem to wake up around 9:30.  I don\’t hear anything particularly abnormal around then, so maybe it\’s related to the heating system?  Something to look into.  
Socially, I\’ve had some major downs recently, but also some ups.  Some people treated me rather poorly and the discussion of it was extremely tiring and unpleasant.  It actually exhausted my entire store of energy for the whole weekend, which was rather dismaying given my lack of blog buffer.  
But I still managed my Monday appointments, including lunch with my dad, an hour plus chat session with the Executive Director of ASK, and then a viewing party of the latest episode of The Good Place with friends.  All these things were draining, and yet good for me emotionally.  Kind of weird how that works.  I\’m grateful, though!

Reading the Research: Making fMRIs Tolerable for Everyone

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 marks a great step forward in research.  It has, in the past, been basically impossible to get useful MRI data on some people on the autism spectrum.  As the article notes, it\’s really difficult for anyone to wear a giant helmet in a teensy tiny space, and then try not to move.  When you factor in reduced communication skills, it becomes even harder, to the point of being all but impossible.  

Except now it\’s not, because these researchers just did it.  This is excellent.  

It doesn\’t seem like very much, but here\’s the thing: science is only as good as its data.  If your data doesn\’t properly represent the population you\’re trying to test, your results are also not going to represent that population.  Almost all of our fMRI data is from autistic people with higher verbal skills and better blending skills.  This skews our research, potentially making it only being relevant to those populations.  I probably don\’t need to point out that this is undesirable.  

Maybe some of the results translate to all autistic people… but maybe we\’re missing a fundamental part of the picture because those low-communication and lower IQ people aren\’t represented.  And maybe we could learn a lot by just studying that population, now that we\’ve shown we can.  

I\’ll repeat this, because it\’s very important: science is only as good as its data.  It does me good to see that now more of the autism spectrum can be represented.  And because of that representation, be served better by science.  The results of research turn into therapies, support services, educational programs, and eventually, bleed into how the general population treats us.  

Which means a better world for all of us. 
(If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that didn\’t make the cut for a Reading the Research articles!)

Looking Forward, Looking Back (2019)

Posted on by Realistic Autistic
At least where I\’ve lived, people make New Year\’s Resolutions around New Year.  Sometimes they\’re made in earnest, sometimes they\’re just a load of hot air.  But mostly what I notice is that people tend to give up on them if they don\’t work out fairly quickly.  
I think that\’s kind of pointless.  Real change, I\’ve learned from both my psychology degree and from personal experience, is often slow.  Sometimes it\’s very difficult.  Habits can hard to change.  But if you want it badly enough, you can manage it despite that slowness and difficulty.  
I\’m not as enamored of making goals for the new year as my culture is, but I do think even minor introspection on ways to improve one\’s life is a good idea.  So while I\’ll flatly refuse to call them resolutions, I do make a list of goals each year.  Last year\’s is here.
Ideally, these are SMART goals: Specific, Measurable, Achievable, Relevant, and Time-bound.  So rather than saying, \”I\’m going to get in shape this year!\” you might say, \”This year, I\’m going to aim to lose 20 pounds by instituting and holding a 4 day a week exercise schedule at the gym.\”  You have your measureable, time-bound goal: lose 20 pounds by the end of the year.  You have a specific, relevant, measurable method of achieving this goal as well: creating and adhering to a 4 day a week exercise schedule at the gym.  And hopefully your chosen method is achievable, or you\’d best choose a different method, like yoga, cycling, or jogging.  

Looking Back at 2018\’s Goals

1.  Create and keep a buffer for at least 10 months of the year.  Preferably the entire year after I rebuild the buffer.

I think I actually succeeded at this one.  Sometimes the buffer was only \”well I still have one more week of buffer, that counts..!\”  And I\’m pretty sure I did run out of buffer at least once or twice, but the goal wasn\’t to not run out of buffer, it was to keep a buffer for the vast majority of the year.  Which I did.  Yay!

2.  Finish the arduous and exhausting job of house-hunting, get moved into a house or condo, and stop having to give a crap about the whole thing.

This also happened.  It was deeply unfun.  But I\’m writing this not from a rented apartment, but a mortgaged condo.  It took a lot of work on my spouse\’s part, sifting listings, finding a realtor, and both of us together figuring out what we wanted from a place.  Seeing all the various places despite work and other scheduling issues.  (You can read the first post of the 3 part saga here.)

3.  Become better at managing a social network, and network with several autism researchers in pursuit of increasing my chances at a career in autism, and if nothing else, helping nudge research away from \”what causes autism\” toward \”what helps autistic people?\”

Uh.  This… mostly didn\’t happen.  I didn\’t take out the \”how to network\” book at the library like I said I might.  I did meet some people at the government research panels, and I think made some actual human connections, but there has to be follow-through there, and I… didn\’t.  I need to work on getting peoples\’ business cards.  And then follow up with them.  And maybe get that book.  

It\’s not a total loss.  I did talk to researchers and parents this year.  I just don\’t think I made as much of a difference as I was hoping to.  I won\’t say I completely failed at this goal, but I\’d give it a \”ehh…\” rather than a \”yay!\” or \”success.\”  Failure is a mandatory part of life, and a valuable learning experience, so hopefully I can learn from this and do better in the coming year.

4.  Keep steady on the 2 days a week exercise with my parents, and find, buy, and use a recumbent exercise bike this year for the 3rd day per week.

This was kind of a mixed bag.  I definitely succeeded at part 1, except for during holidays and such when it wasn\’t really an option to do the classes.  Over the late spring, summer, and early fall, I well and easily exceeded this goal, though not in the way I\’d planned.  I took my bike and went outdoors with it 3 days a week, using the bike trails that run a sneeze away from my new home.  So I had a 5 day a week exercise schedule while the weather was nice.

But when the weather turned poorer, I stopped biking outside.  Unfortunately, I find biking outside much more tolerable than using the recumbient bike inside.  I\’d meant to have something else to fill the third day, like yoga or some other indoor exercise, but between the mess that was October and the holidays afterwards, that third day just really didn\’t happen.

I think it could happen, if I re-committed to it.  But I really need to do something with myself besides trying to use the computer and the exercise bike at the same time.  I can do it, but it\’s clumsy and unpleasant and makes me not want to repeat the experience each time.  The downstairs area has more options for distractions from exercise now.  I just need to figure out something that doesn\’t feel like I\’m wasting time, yet doesn\’t demand I twist my torso sideways.

Moving Forward in 2019

This year\’s goals are going to be bit less generic, I think.  Some of them won\’t make any sense without explanation, which is probably fine.  In general I don\’t think I make all that much sense without explanation, being autistic and such.  
So, this year, I\’m going to try to:
1.  Exercise at least 3 days a week, at least a half hour each session, minimum.

Exercise has been on my goals lists for the last two years, too.  I\’m still not managing 3 days a week reliably.  Failure is a mandatory part of life, and an important learning opportunity.  While I definitely got more exercise last year than any year prior, I still need a better plan as to how to handle the months of bad weather.  
Exercise tamps down on my anxiety and depression levels, which is extremely important for my wellbeing.  It\’s a pain in the rear, though, because in almost every context, I really don\’t enjoy exercise.  The singular exception is outdoor biking in good weather, which I do kind of slightly enjoy?  I still don\’t like the exertion, but the sunlight, fresh air, and scenery changes mostly make up for it.  
So this will probably keep being on my goals list until it\’s accomplished to my satisfaction.  I\’d love to lose weight due to this, but I\’d really just settle for being healthier overall, mentally and physically.  The weight loss will happen, or it won\’t.

2. Finish my catching up on the MBMBAM podcast and get started on the wider range of podcasts I\’ve already set up for myself.

This won\’t make sense to most of my readers.  MBMBAM is the shortened version of My Brother, My Brother, and Me.  It\’s a comedy podcast where three brothers take questions from their listeners and the Internet, and discuss them in funny ways.  Sometimes the questions get answered, sometimes not, but the end result is generally enjoyable if you don\’t mind the absurdity.  The brothers have good chemistry for siblings.  
If you followed that link, you\’ll notice there are in excess of 440 of these episodes.  I have this very very bad habit of wanting to start from the beginning with things, and not at the end.  Even if, as in this case, you really don\’t need to start at the beginning to enjoy the series.  
I think I\’ve been trying to catch up on this podcast for something like a year at this point.  I am on episode 356, so I\’m… getting there.  But in the meantime, I\’ve collected other recommendations, such as NPR\’s Invisibilia, which talks about interesting social phenomena and forces that aren\’t normally discussed in the news, with the idea of making you think more about yourself, your beliefs, and your life.  
There\’s also Pivot, which looks like it\’s probably more news-related.  Which would somewhat address my abysmal lack of connectivity with world events. And the one most relevant to this blog: Ouch: Disability Talk.  The interviews and discussions from people hooked into the disability world will be helpful for making this blog relevant to the wider autism spectrum.  

3. Quantify the environmental downers around the house I can be susceptible to, and eliminate or treat the issues if at all possible.

I\’ve complained a lot about the algae in the pond out back, and mold inside the house.  But they\’re not the whole story, and I\’m still trying to figure out what else is messing with me.  I think it\’s an air quality thing, because when I shut the flue in the fireplace, it gets worse.  So, while it\’s still cold outside and the algae is dead, I\’m occasionally airing out the house.  I also have a respirator mask for when the algae starts growing again, but it\’s uncomfortable to wear.  
Anyway, this year I\’d like to pin down what things tend to cause what symptoms, and what this third factor is.  It doesn\’t seem to be carbon monoxide (whew), and we\’ve searched the house pretty thoroughly for more mold, with no luck.  Narrowing things down is important, if nothing else.  
We also might look into buying a better air purifier.  The one we have makes an irritating whine that sets off my tinnitus.  It\’s better to treat the source of the problem than to simply slap a bandaid (air purifier) on it, but if bandaid is all I have, it\’s what I\’ll take.

4. Pick up an autism-related volunteer or paid job.

This is a form of career progress.  I feel like I do best when I have more chances to meet people, regularly.  Conferences are very very expensive, so if I ever have copious amounts of money, I could do those.  But I don\’t right now, so a part time job of some variety would be a potential way forward.  
Part time would be basically mandatory if I want to keep this blog going.  I\’ve done pretty well here in the last year, and I\’d hate to lose it in the mess of transitioning to having less free time.
Fortunately, I have an easy \”in\” for a volunteer position with Autism Support of Kent County.  I just need to follow up on it and commit to it.  
An ancillary goal is to print out these goals and have them at my computer where I can see them, so I don\’t forget about them, by, say, June.  Making goals is good, but kind of pointless if you don\’t try to follow through.  

Legwork and Life, week of 1/9/19

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.

Hello from 2019, where I am still not quite back to my usual schedule.  At this point in the week, I think the only thing I can fairly blame is Games Done Quick, which is a charity event that\’s been going since Sunday.  Essentially, a bunch of highly skilled people speedrun games (play games as quickly and efficiently as possible) to entertain people and raise money for a charity.  

This winter event always supports Prevent Cancer, which aims to do what its name says.  Being suspicious and terrible, I looked into the organization, and they\’re very good as charities go.  So that\’s pretty cool, particularly since, as of now, the event has raised nearly half a million dollars.  I imagine it\’ll probably double by the end of the week, but as I\’ve never actually watched one of these until this year, I\’ve no idea.  

As a a child, I was wholesale banned from playing console video games, and severely limited in my usage of the computer.  This kept me from being socialized in the growing culture of video games, and also limited the development of my hand-eye coordination.  As a result, I\’m not very good at most video games, and have played far fewer of them than most people my age.  

Whether this was a good choice on my parents\’ part or not is debatable, and I won\’t go into it here.  Instead, I\’ll note that watching this charity event, with video games being played and completed in anywhere from 7 minutes to an hour, means I get to see a whole lot of different kinds of games in a very short time.  Certainly, I don\’t get to see the stories- one of the most basic strategies of speedrunning is \”skip the dialogue as fast as you possibly can\”- but I do get to see the gameplay.  It\’s interesting to see all the visual tricks and virtual camerawork that goes into things as simple as platformers (where the main aim in the game is to move your avatar from floating platform to floating platform, without falling and dying).  

So essentially, it\’s kind of like getting a very brief education on every game I watch.  It lets me earmark games I\’d like to see in more detail, which includes most of the story-based ones.  Because I\’m still not very good at video games, I\’ll probably watch most of them in Let\’s Play, rather than buying and attempting to play the game myself.  

It\’s also really cool to see the communities that have formed up around all these video games.  As the players play their video games for charity, people from the audience cheer their successes and groan at their accidental failures.  Donations come in for the event with messages attached.  Some of the messages talk about family or friends fighting cancer, or lost to cancer, but some are simply to cheer on the particular player while they\’re on camera.  In some cases, a whole group in the same community as the player will chip in together for a sizable donation, which tends to bring a smile to the player\’s face, even as they continue to focus on the game.  

Finally, Games Done Quick seems to have put serious effort into being as accepting as possible.  While the event is held in English, there are players and attendees from all over the world.  Darker skin is no bar to this event.  Neither are disabilities, it seems- one of the official staff, an interviewer, was a Little Person (dwarf, midget, choose the least offensive term here).  There have been runners and commentators that are clearly trans.  Their chosen pronouns have been respected.  You can also routinely hear warnings for people with epilepsy, as certain parts of some video games can trigger seizures.  

Unsaid prior to now, but meriting comment, is that many of the players and attendees are likely on the autism spectrum.  Nobody would walk around saying, \”Hey, are you autistic?  What about you?  And you?\” at an event like this, but at one point as a game was starting, there was some microphone feedback, and you could see some people were more pained by the resulting high-pitched shrieking than others.  Sensory sensitivity is not a direct indicator of autism, but people with autism often also have sensory sensitivities… and video games tend to attract autistic people as well.

Beyond my virtual attendance of Games Done Quick, everything\’s settling back to normal, save some scattered doctor\’s appointments.  I\’m hoping those won\’t be too expensive, but we\’ll see.  Going to try to get allergy tests, have my only wisdom tooth removed, and get a pair of weird skin lumps killed off at a dermatologist.  The lattermost probably won\’t be anything interesting (like, y\’know, cancer), but they are annoying, so best to kill them just in case.