Reading the Research: Psychological Flexibility

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 ties into the Diagnostic and Statistical Manual criteria for autism.  More precisely, I think it makes a sound argument that rigidity isn\’t specifically an autistic trait.  For reference, the criterion I\’m referring to is this:

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text): 

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).


With this in mind…  The article talks about psychological flexibility.  Three levels, high, medium, and low.  These levels of flexibility were measured alongside psychological distress.  It was found that people suffering high levels of psychological distress tended to have low levels of psychological flexibility, while people with low levels of distress tended to have high levels of flexibility.  

So, what causes psychological distress?  It\’s actually all kinds of things: difficulty finding a job or handling the demands of a job, a death or tragedy in your social circles, rejection from people in your social circles, not living up to the expectations you or other people place on you, the stress of moving from one home to another, or the slog of managing chronic pain or other conditions that wear away at a person.  All these and more can cause distress, and the more things a person is dealing with at a time, the higher their distress level is.  

Some quick examples from people I\’ve literally met to make these ideas more clear:

  • A male student in a Christian college recognizes, after a presentation on the sexuality spectrum, that those nagging feelings he\’s been trying to ignore since age 12 are the clear signs that he\’s gay.  His community and parents will not approve. 
  • A single mother finds that her job in retail (one of two jobs she holds) is upping her hours, and she does not have a choice about this change.  The additional hours will make it so that she barely sees her kids each day.  Her family is important to her, and she cherishes the time she spends with her kids.  But she needs the job to pay for housing, food, and medical expenses.  She must decide whether to quit the retail job and search for another job so she can still spend time with her kids, or sacrifice even more of her family-time in exchange for security.  
  • An autistic child goes to an integrated school every day and tries to make friends with their peers.  They do not succeed, over and over.  The other children begin to mock the autistic person\’s eccentricities and refuse to be friends with them.  The teachers do not intervene.  The child feels lonely and despairing, and begins to withdraw into themself.  The child\’s parents, seeing their lack of effort, encourage them to try harder.
The first example is societal and personal rejection.  Gay and other LGBTQIA+ people often suffer this kind of rejection, and must decide whether they want to hide this part of their personality, or show it and accept the rejection that comes with it.  
The second example is a matter of others\’ expectations and existing job demands.  As big companies continue to see how far they can squeeze their employees, many people, especially minorities, have to make decisions like these.  
The third example is a very common one for autistic children, and is an example of mismatched expectations as well as personal and societal rejection.  
I would argue that existing as an autistic person in this world, a world that commonly doesn\’t accept, understand, or appreciate autistic people, is a source of psychological distress.  Not because it\’s inherent to autism, but because of how people tend to react to that autism, and treat people with autism overall.  
The end result of this raised amount of psychological distress might well be the rigidity ascribed to us in the diagnostic criteria.  I think it\’s a reasonable assumption, anyway.  If accurate, it also makes the case that if the psychological distress in an autistic person can be reduced, their flexibility will increase.  Which I think we can all agree is a good thing.


(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: Autism Adulthood

Posted on by Realistic Autistic
Autism Adulthood: Strategies and Insights for a Fulfilling Life, by Susan Senator, is a remarkably thoughtful parent-written book about how to create a meaningful life for an adult autistic person.  Especially, notably, a low- or non-verbal autistic person.

The book manages to handle this rather tricky subject with a surprising amount of grace and humanity.  I\’m afraid, as an autistic advocate, that I\’ve been rather put off by the way autism parents talk about their grown children.  One group in particular (whose name I won\’t mention in hopes of being more adult and graceful than several of them put together) was all but hostile to me when I attended one of their meetings.  This was before I cut and dyed my hair, too, so I didn\’t exactly scream \”young autistic adult in defiance of institutionalization and social norms.\”

Anyway, the author of this book seems to have an understanding of neurodiveristy and avoids demeaning terms like \”adult child\” and instead simply refers to her autistic son and her friends\’ sons as \”our guys\” or by their names.  It\’s not exactly descriptive, but it\’s a lot more humanizing than literally any other vocabulary I\’ve seen anywhere else.  Her story mainly involves the stories of sons, rather than daughters, but I think much of the information in the book applies to both sexes.

The topics covered by the book include housing options, employment, risk management, choosing caregivers, financial planning, and the dreaded question, \”what happens when I die?\”  Rather than the author simply opining on each subject, she went out of her way to interview and discuss these subjects with dozens of parents, professionals, caregivers, and even siblings of autistic adults.

The writing style of the book was clear and easy for me to understand.  It was both approachable and friendly, neither overbearing nor over-specific.  It provides a framework for all the subjects it touches, giving you places to start and pointers in broad brush strokes.  Because each state in the US has different laws around Medicaid and housing, this is actually a good thing.  It leads you to the right kinds of questions to ask.

I also really appreciated that this book took the time to address the issue of siblings.  Siblings can be one of the greatest gifts to autistic people.  But there\’s certain struggles and frustrations involved in being a sibling to an autistic person, and these things are sometimes overlooked in the work of supporting the autistic person.  The fact that this book offers resources to help support siblings as well as the parents is invaluable, and I very much hope that these resources become more widespread.

On a personal note, two things.  First, I appreciated chapter 6: \”The Struggles of Apparently High-Functioning Autistic Adults.\”  It makes very valid points about the situations of people like me.  To those, I\’d add one more thing.  For people like her son Nat, there\’s hopefully a village to help surround and support him.  For someone like me?  Not so much.  It\’s not that my parents didn\’t love me.  It\’s that they expected me to handle my own issues.  And I did, but I suffered for the lack of support.  If all goes well, Nat will never lack for people to ask for help the way I did.

Second, the title of chapter 8 is, \”Am I My Brother\’s Keeper?\”  This is, of course, a reference to the Biblical story of Cain and Abel.  After Cain killed Abel in jealous rage, God asked Cain where his brother was.  His flippant response was the quoted question.  Many years later, I read the true answer to that question in a work of science fiction.  I wanted to include it here.

Am I my brother\’s keeper?

You are his keeper, as he is yours.

Read This Book If

You\’re a parent, guardian, or caregiver of an autistic person, especially one who\’s pretty clearly not following the \”standard\” academic track, is low- or non-verbal, or is already an adult and is having a hard time adjusting to \”adult life.\”  Even extended family could make use of this book, if only to understand what the parent, guardian, or caregiver is going through, and how to help.
This has become the first book I will point to if autism parents ask me, \”How do I plan for my child\’s future?\”  If I was non-verbal or low-verbal, this is the book I\’d want my parents to read.  It\’s that good.  Please read it.  

Legwork and Life, week of 2/6/19

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.

I am hopefully going to be more awake each day from now on.  A couple weeks ago I mentioned I\’d borrowed a light box thing from my doctor.  I complained of being painfully awake.  Turns out I\’d been using it for too long.  (How 20 minutes per day can be too long, God only knows.)  But it did have an appreciable effect, so I got the least expensive version to have around the house.  

Meet the Tiny Doom-Light.

Barely taller than my hand, but has all the attitude of the larger light!

So I\’ll experiment with this a little bit.  It\’s possible that as little as 5 minutes a day will be sufficient to elbow my circadian rhythm back into proper order.  For most people, 5 minutes would be nothing, but my system is apparently obnoxiously oversensitive.  It\’s like that about sugar and other things, too.  

Likely this will become one of the many coping tools I have around the house, adding onto my gatorade substitute, my supplements, my exercise bike, my leg pillows, my earplugs, and my grounding mats.  So many things to keep one person relatively balanced.  It\’s kind of disheartening, when you consider I only just turned 30.  

I\’m feeling a little more overwhelmed and low-energy than usual this week due to health-related developments in my grandmother.  She\’s been in and out of the hospital due to various things.  At present she seems to be on the road to recovery, with no further hiccups anticipated.  So that\’s good.  Because she\’s important to me, I\’ve taken time out of my week to go to the various places she\’s been recovering to visit, sometimes with my mom, sometimes not.  It\’s been an educational experience, which I may explain in more detail later.  It\’s not the cheeriest subject, I\’m afraid.  

For the time being, I\’ll just say that she\’s my very last grandparent, including Chris\’ relatives, and while our relationship has certainly had bumps, I love her very much and hope for the best for her.  I spent time visiting I\’d have otherwise spent working on this blog and handling chores, but it was time well-spent.  I\’m glad to see the piles of snow I mentioned last week on the retreat.  It should make it easier to visit in the future.  

Reading the Research: 17 different kinds of happiness

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 explains a bit of the complexity of emotional recognition for autistic people.  Assume the autistic person doesn\’t have the innate ability to read faces, the way typically-developing people usually do. 

First, everyone\’s face is different.  Second, there are 16,384 different ways a human face can express emotions.  Third, a lot of the people you need to read aren\’t familiar to you.  Fourth, everyone expects you to be able to do this flawlessly.  

I thought it was kind of interesting, and heartening, that there were only 35 categories of emotional expression.  That doesn\’t, you understand, make it much less complicated to read any given person\’s face.  But it does mean that teaching materials for each of the 35 categories would actually be an option.  

This article got me thinking about how I read faces, and it occurs to me that I tend to consider the situation a person is in first, and then try to piece together their expression from that starting point.  So if someone looks angry when their situation should be calming and happy, I\’m going to be very confused and not quite believe my eyes until I can figure out why they look angry.  

That\’s backwards of most people, from what I can tell.  I think most people read expressions first and then consider circumstances from there, if their train of thought goes that far.  Looking at the stock image on the article, with the eight pictures of the teenage girl, I have difficulty telling the difference between the emotions in the 5th, 7th, and 8th pictures.  And because it\’s just a stock photo, and thus has minimal context, I have literally no idea what the minute differences in head tilt, eye crinkling, and… whatever else normal people see in those pictures to differentiate them.  

I really have no idea.  When it comes to reading expressions, I really need context for anything more subtle than, \”angry, sad, happy, or disgusted.\”  I took a test online once, and it told me that while I don\’t have face blindness, but I do have great difficulty with faces.  

This was not news to me.  Just a few days ago I met a guy, and saw him again later at another lecture.  He recognized me easily (I\’m sure the blue hair helped), but because he was wearing a hat and because my eyes and brain don\’t work together well, I didn\’t recognize him at all.  I couldn\’t tell if he was offended, but my guess is yes.  Most people are.  It gives me a great deal of anxiety.

(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.)

Worth Your Read: The Last Straw

Posted on by Realistic Autistic
https://miatblog.org/2019/01/the-last-straw/

I don\’t often do a lot of discussion in regards to physical disabilities.  This is because I don\’t, at this point in my life, have any.  That makes me a less effective advocate for issues like these, and so I usually simply point people to better advocates on the subjects (such as the above article).

As I age, my health situation will likely change, and perhaps I\’ll be able to advocate more personally.  However, my current lack of physically expressed disabilities isn\’t necessarily the norm for autistic adults.  Or even autistic children.  So this merits the signal boost and whatever limited insight I can offer.

It\’s a bit of a case of \”better late than never,\” in all honesty (the straw debate debuted in 2018), but if nothing else, I hope it\’ll shed a bit of light on the subject.

Cerebral Palsy (CP) sometimes accompanies autism.  So does epilepsy.  Sometimes multiple sclerosis as well.  But even something as simple as deficits in gross and/or fine motor skills (very common with autism) can make a plastic straw from a luxury into a necessity.

Ever gotten water into your lungs?  Like, you swallowed the wrong way and some got down the wrong pipe?  And though you coughed and hacked for minutes, you still felt like there was stuff dripping into your lungs?  I have.  It\’s not common for me, but it\’s very unpleasant.  Also, apparently, it can absolutely kill you, thanks to pneumonia.

Imagine having to have that feeling of liquid in your lungs every time you tried to have a drink.  Also, your hands shake, so you\’re always spilling on yourself.  Your clothes will frequently smell like pop, or tea, or whatever drink you happen to have.  They\’ll develop stains, which people will see and become judgmental about.

You can avoid all of that with a simple plastic straw.

The author here knows more about the subject than I do.  But I\’d add my voice to hers: if you care about \”being green,\” advocate for compostable takeout containers.  Or start recycling their packing waste and food waste.  Or you, personally, help fund your local recycling center so they can recycle more stuff.  Maybe don\’t personally use plastic straws if you don\’t need them, too, but do these other things.  They are by far better ways to help the environment than simply taking away assistive technology.