Legwork and Life, week of 7/31/19

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\’m tired this week.  Between the bright summer morning light and my spouse getting up in the morning, I can\’t seem to sleep in at all.  In addition, I abused my system a bit yesterday in service of science and improved knowledge, which I\’ll explain in detail on Friday.  I haven\’t had to go to the hospital, but the experience definitely took a toll.  I\’m now trying to recover from it.  With luck, it won\’t take the rest of the week.  

I\’m going to start getting more serious about the wifi restriction stuff I mentioned wanting to try last week.  Starting with turning the wifi off at night.  I miss being able to sleep in, and while the summer light levels probably mean that\’s an impossibility, I\’d like to exhaust my options.  

It\’s been kind of a busy week.  There was a work party at Chris\’ workplace, which we attended.  We didn\’t stay long, because it was supposed to be a family-friendly thing, and we don\’t have kids and also don\’t know many people at the company.  But it was free food, at least.

We also had two sets of friends visit the house, which was fun but also draining when you\’re already low on energy.  The first was a dinner and game night combo, the second a dessert and movie night.  Good times were had.  Another friend will come by tomorrow.  This is all good for my social life, but bad for my energy levels and attempts to get work done on this blog.

Lastly, still another friend got into a car accident, which totaled her poor car and gave her and her wife some ouchy bruises (though thankfully no other injuries, apparently).  She\’s having kind of a bad time right now, so I\’m helping out by serving as transportation to work, and occasionally errands.  Considering I have the luxury of my own car, this is a service that\’s easier for me to offer than it could be.  It does take time, which I\’m making the best of with podcasts.

I\’d been neglecting my podcasts for the last month or so.  I can\’t listen to them while I\’m trying to work, because I need my words-processing capability for formulating ideas and turning them into words.  It\’s a shame, because I missed listening to my various folklore, history, news, and comedy podcasts.  Possibly, I should simply set aside some time each week to simply do that, rather than expecting opportunities to pop up.  In the meantime, though, I get to listen to a podcast, then spend time with my friend for a bit, then listen to more podcast on the way home.  

Reading the Research: Safe at Home?

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 addresses bullying, especially the more hidden type: sibling bullying.  It\’s well known, at this point, that autistic people tend to be bullied much more than our neurotypical peers.  The Japanese proverb goes, \”the nail that sticks up gets hammered down.\”  It applies very strongly to autistic people, and it\’s especially obvious as children. 

Usually, when bullying is brought up, it\’s in regards to the school system, or the playground.  This isn\’t surprising, it\’s where a lot of socialization and interaction happens.  Thing is, the interactions don\’t stop when you go home.  Particularly when siblings come into the mix. 

It\’s not easy being the sibling of an autistic person.  Often, the autistic person has higher care needs than the other siblings, and therefore the parents spend more time on the autistic child than the others.  This can cause jealousy, hurt, and sadness.  The differing expectations parents may hold for their different children can also be a source of strain and frustration. 

This is, of course, in addition to the autistic person\’s differences in interactions, responses, and interests.  Siblings who share interests may play together, but autistic peoples\’ interests can be so deeply focused, or so unusual, that it\’s hard for others to enjoy them, or even share them.  This was mostly the case with my brother and me, though some of that might also be explained by the five-and-a-half-year age difference. 

So in the end, you have a lot of potential strain on the family relationships.  This can lead to bad behavior, such as bullying.  In addition, the autistic child may not know or understand that bullying is not an appropriate behavior, so once learned, they may perpetuate the cycle of cruelty. 

A home is supposed to be a place of safety and support, so that even if school is a nightmare, at least home is a refuge and a place to be yourself.  It\’s kind of horrifying to me to even consider how my life might have gone if my brother had been more adversarial about our relationship.  Even just imagining having siblings closer in age that teamed up regularly to make my life harder would probably have sent me into a lot of poor behavior. 

Therefore, I can\’t stress enough how important Sibshops and similar programs are.  Healthier family dynamics mean happier kids, happier parents, and better lives for everyone involved.  And hopefully, such programs can head off these situations before they begin, or at least before they snowball into rampant bad behavior. 

(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: Mindful Living with Asperger’s Syndrome

Mindful Living with Asperger\’s Syndrome: Everyday Mindfulness Practices to Help You Tune Into the Present Moment, by Chris Mitchell, is a guidebook on meditation and mindfulness specifically for autistic people, by an autistic person.  At less than 125 pages, it\’s a short read, which is nice.

The main of the book discusses mindfulness, how it\’s helpful for autistic people, why you might want to start practicing it, and then, how to practice it.  My attention as a reader was quickly drawn away from that by how hyperfocused the author was on the diagnosis.

The words \”Asperger\’s syndrome\” are on basically every page, as if this is the most important thing about the reader and all the reader\’s personality traits and tendencies are derived from that. I found the repetition rather distracting and kind of superfluous to the topic at hand.  It was so distracting that I stopped reading and counted.  In the first 62 pages, there were exactly four pages that didn\’t mention Asperger\’s syndrome or autism in some fashion.

Honestly, it felt like the author was still in the \”everything strange or different about me is autism\” stage of handling the diagnosis, but that might not be accurate given that he wrote the book some 16 years post-diagnosis.

That highly distracting repetition aside, the book does walk you through several meditation and mindfulness practices and why they\’re relevant to autistic people in particular.  The idea of mindfulness is to take your mind out of the past or the future, and focus on the present, including any sensations you might be experiencing.  Practicing it can pull you from your everyday preoccupations, help you relax, and sharpen your observational skills regarding yourself and others.

The author opines that autistic people tend to get \”stuck in routine,\” because routine in comfortable and safe.  But then when the routine is disrupted, it\’s extremely upsetting and can cause meltdowns.  With mindfulness, you can become more flexible to change, see social situations differently, and manage yourself better.

Most of the mindfulness practices were ones I\’d heard of before, but there was one new one: walking practice.  Generally when one talks about meditation or mindfulness, the assumption is that you\’re in some quiet place, sitting comfortably but with good posture, or perhaps performing yoga.  Apparently you may practice mindfulness in the course of taking a walk, and that is also acceptable.  I have trouble sitting still and focusing on simply being, so combining light exercise with mindfulness might be a good plan, and less likely to drive me batty.

I do kind of wonder about the effect of mindfulness on sensory sensitivities. The practices in this book instruct you to acknowledge and accept incoming sensations, like background noise, strain in your muscles, and any sensations on your skin. I suppose this makes me worried that practicing might lead to sensory overload, because being aware of all these things can be overwhelming and painful. That\’s literally how my flavor of sensory overload works: my brain stops even trying to filter out irrelevant noises and everything gets so loud and sharp and overwhelming that I have to go hide somewhere quiet.

I assume that\’s why you generally practice mindfulness in a quiet, comfortable environment, but as someone who hasn\’t really made a lot of headway with mindfulness or meditation, I really wouldn\’t know. Maybe mindfulness gives you a superpower to head off sensory overwhelm, if you practice faithfully and find what works for you.

In all honesty, I\’m not sure this book was written for someone like me.  I don\’t actually have much by a way of a routine to get stuck in.  There are regularly scheduled events, but if those don\’t happen, I don\’t get really upset.  Schedule changes are really only anger-inducing if they keep happening over and over, with the same events getting pushed back and back.  I\’ve accepted that life is unpredictable by nature, and that I have a certain amount of desire for new and interesting things.  I have disabilities around sensory issues, but I tend to compensate for them and try not to let them keep me from going out or seeing friends and family. 

This might mark the first time an autistic person has made assumptions about how my autism affects me, and been wrong.  I don\’t know why that surprises me.  Professionals, parents, and teachers get it wrong all the time.  There are eleventy billion definitions of autism, and it\’s not like there\’s much agreement on the subject.  So differing opinions, even in the autism community, would be nothing new or surprising. 


Read This Book If
You\’re autistic, prone to getting stuck in routine, and want to change that using mindfulness.  Also, make sure you can get past the endless repetition about your diagnosis. This is a pretty niche book, to be honest. It\’s fine at what it does, but it\’s pretty much the bare basics and doesn\’t strive to be more than that.

Book Review: Mindful Living with Asperger\’s Syndrome

Mindful Living with Asperger\’s Syndrome: Everyday Mindfulness Practices to Help You Tune Into the Present Moment, by Chris Mitchell, is a guidebook on meditation and mindfulness specifically for autistic people, by an autistic person.  At less than 125 pages, it\’s a short read, which is nice.

The main of the book discusses mindfulness, how it\’s helpful for autistic people, why you might want to start practicing it, and then, how to practice it.  My attention as a reader was quickly drawn away from that by how hyperfocused the author was on the diagnosis.

The words \”Asperger\’s syndrome\” are on basically every page, as if this is the most important thing about the reader and all the reader\’s personality traits and tendencies are derived from that. I found the repetition rather distracting and kind of superfluous to the topic at hand.  It was so distracting that I stopped reading and counted.  In the first 62 pages, there were exactly four pages that didn\’t mention Asperger\’s syndrome or autism in some fashion.

Honestly, it felt like the author was still in the \”everything strange or different about me is autism\” stage of handling the diagnosis, but that might not be accurate given that he wrote the book some 16 years post-diagnosis.

That highly distracting repetition aside, the book does walk you through several meditation and mindfulness practices and why they\’re relevant to autistic people in particular.  The idea of mindfulness is to take your mind out of the past or the future, and focus on the present, including any sensations you might be experiencing.  Practicing it can pull you from your everyday preoccupations, help you relax, and sharpen your observational skills regarding yourself and others.

The author opines that autistic people tend to get \”stuck in routine,\” because routine in comfortable and safe.  But then when the routine is disrupted, it\’s extremely upsetting and can cause meltdowns.  With mindfulness, you can become more flexible to change, see social situations differently, and manage yourself better.

Most of the mindfulness practices were ones I\’d heard of before, but there was one new one: walking practice.  Generally when one talks about meditation or mindfulness, the assumption is that you\’re in some quiet place, sitting comfortably but with good posture, or perhaps performing yoga.  Apparently you may practice mindfulness in the course of taking a walk, and that is also acceptable.  I have trouble sitting still and focusing on simply being, so combining light exercise with mindfulness might be a good plan, and less likely to drive me batty.

I do kind of wonder about the effect of mindfulness on sensory sensitivities. The practices in this book instruct you to acknowledge and accept incoming sensations, like background noise, strain in your muscles, and any sensations on your skin. I suppose this makes me worried that practicing might lead to sensory overload, because being aware of all these things can be overwhelming and painful. That\’s literally how my flavor of sensory overload works: my brain stops even trying to filter out irrelevant noises and everything gets so loud and sharp and overwhelming that I have to go hide somewhere quiet.

I assume that\’s why you generally practice mindfulness in a quiet, comfortable environment, but as someone who hasn\’t really made a lot of headway with mindfulness or meditation, I really wouldn\’t know. Maybe mindfulness gives you a superpower to head off sensory overwhelm, if you practice faithfully and find what works for you.

In all honesty, I\’m not sure this book was written for someone like me.  I don\’t actually have much by a way of a routine to get stuck in.  There are regularly scheduled events, but if those don\’t happen, I don\’t get really upset.  Schedule changes are really only anger-inducing if they keep happening over and over, with the same events getting pushed back and back.  I\’ve accepted that life is unpredictable by nature, and that I have a certain amount of desire for new and interesting things.  I have disabilities around sensory issues, but I tend to compensate for them and try not to let them keep me from going out or seeing friends and family. 

This might mark the first time an autistic person has made assumptions about how my autism affects me, and been wrong.  I don\’t know why that surprises me.  Professionals, parents, and teachers get it wrong all the time.  There are eleventy billion definitions of autism, and it\’s not like there\’s much agreement on the subject.  So differing opinions, even in the autism community, would be nothing new or surprising. 


Read This Book If
You\’re autistic, prone to getting stuck in routine, and want to change that using mindfulness.  Also, make sure you can get past the endless repetition about your diagnosis. This is a pretty niche book, to be honest. It\’s fine at what it does, but it\’s pretty much the bare basics and doesn\’t strive to be more than that.

Legwork and Life, week of 7/24/19

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

I did end up making a mixed berry pie from the summer black raspberries.  I needed to supplement it with a few store raspberries and blackberries, but I think the end result was pretty good.  I froze about half the pie after it had cooled, because a whole pie is a bit much for two people to eat in a few days.  


A mixed berry pie with a heart cut into the top crust.
a green cutting board with a paring knife.  Below are three berries for comparison: a raspberry, a blackberry, and a wild-grown black raspberry.  The wild berry is about an eighth the size of the blackberry.

I\’m still coughing and sniffling a bit.  And the red bumps aren\’t really going away.  My doctor has a theory for this, which I think I\’ll try out next week.  The test will likely be misery-inducing, but hopefully educational, and it\’s only as expensive as buying some extra food ingredients and planning a day\’s meals.  I\’ll make a Friday post out of it, so look forward to that next week.  

View from a glider- mostly puffy white clouds and blue sky

View from a glider.  A layer of puffy clouds, with patchwork of trees, roads, and farmland below

View from a glider.  Patchwork of fields, forests, and roads, with the occasional puffy white cloud.

Also this week, I finally received my birthday present from last year, which was put off by weather- and people-related shenanigans until now.  My spouse bought me a 5,000 foot glider ride, which was fairly fun.  I like the fluffy clouds and seeing the patchwork quilt of the landscape.  Generally I only get to see such things from a commercial aircraft, and even then, not very often.  So it was kind of fun to try this kind of flying.  I probably wouldn\’t go again, especially not with that particular company (because of said people-related shenanigans), but it was a good experience to have had.  

This week I\’ve been experimenting with having the wifi turned off on my tablet at bedtime.  My spouse has kindly done the same.  The theory is that wifi, dirty electricity, and cell phone signals can mess with peoples\’ brain signals, which can disrupt sleep and such.  

I haven\’t noticed a whole lot of changes with the lack of wifi, but then, I\’ve been having to get up for various reasons, so maybe this hasn\’t been the best test.   I\’d like to try a couple more things before giving up on the endeavor.  First, I\’d like to start turning off our home\’s wifi overnight.  It\’s not like we\’re using it while we\’re sleeping anyway.  And second, I\’d like to move the bed away from the wall.  It turns out that our electricity meter (which is a smart meter) is right against the wall the bed is on, which… isn\’t great, by the sound of what my doctor tells me about the theory I\’m testing.  I\’m not really 100% clear on the theory in question, so that\’s something I\’ll have to ask about before I write on it more.

Reading the Research: Communication, Pain, and “Problem Behavior”

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 underlines a point I think many parents miss, but is kind of obvious when you think about it.  

First: all behavior is communication.  When we talk about communication in a mainstream sense, we tend to be referring to a very narrow range of what communication actually is.  Mainly, we’re talking about speaking the country’s dominant language, while following the rules the majority of the population follows.  We might also be talking about what I’m doing here: writing and reading in said dominant language.  

The thing is, communication is so much more than that.  It’s what actions a person takes.  It’s how they take those actions.  It’s pictures and graphs and tone of voice and other languages and personal slang.  There are an absolutely dizzying number of ways people can communicate.  

Calling any of that “problem behavior” is kind of ignoring the essential nature of that behavior.  If it’s a problem for you, then you should figure out what the behavior is communicating.  

Non-verbal autistic people sometimes behave aggressively.  This can be for a lot of reasons, from frustration with their situation, to despair in their life prospects, to the one this article is tracking: pain.  

Anyone who’s dealt with sufferers of chronic pain, or even been in a bad mood due to a headache or backache, shouldn’t find this surprising.  Being in pain, especially day after day, has real consequences for your mood and outlook.  You can see this often in older people, whose bodies can cause them significant pain due to any number of ailments.  The word I’ve often heard or such people is “crotchety,” but “crabby,” “volatile,” and “ill-tempered” have also been applied.  Because nonverbal or low-verbal people can’t easily communicate that they’re hurting, they may also display these less pleasant behaviors, and it’s not so easy to get treatment for the issues when the person can’t tell you what hurts, when.  

Then, too, the person may not even realize their suffering is abnormal.  They may be so used to it that they don’t even think to ask for help.  I’m a highly verbal person, but I actually spent most of my childhood having regular constipation, which caused me pain on a regular basis.  I wasn’t aware this was unusual, and thus that issue continued right up to the point that I accidentally nuked my digestive tract and developed the opposite problem, which now lingers when I eat too much sugar or really don’t eat a perfectly healthy diet.  

One of the common themes I see in “my family’s experience with autism” books and “fix your child’s autism with my system” is the insistence that when the “problem behaviors” go away, the autism is cured or lessened.  This is… mostly a misunderstanding, I’d bet.  The child or adult doesn’t act up as much, or act as unusually after This or That Technique is tried.  The person is pronounced “not autistic any more,” and the day is (supposedly) saved.  

The change in the person’s behavior is because their body is functioning more healthily, and therefore they are suffering less.  When people don’t suffer, they\’re less inclined to be angry, frustrated, and lash out at setbacks and smaller disruptions.  Their behavior will change, because their internal state has improved.  You also have a happier, healthier person, which is really the more important part if you ask me.

(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.)

Reading the Research: Communication, Pain, and "Problem Behavior"

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 underlines a point I think many parents miss, but is kind of obvious when you think about it.  

First: all behavior is communication.  When we talk about communication in a mainstream sense, we tend to be referring to a very narrow range of what communication actually is.  Mainly, we\’re talking about speaking the country\’s dominant language, while following the rules the majority of the population follows.  We might also be talking about what I\’m doing here: writing and reading in said dominant language.  

The thing is, communication is so much more than that.  It\’s what actions a person takes.  It\’s how they take those actions.  It\’s pictures and graphs and tone of voice and other languages and personal slang.  There are an absolutely dizzying number of ways people can communicate.  

Calling any of that \”problem behavior\” is kind of ignoring the essential nature of that behavior.  If it\’s a problem for you, then you should figure out what the behavior is communicating.  

Non-verbal autistic people sometimes behave aggressively.  This can be for a lot of reasons, from frustration with their situation, to despair in their life prospects, to the one this article is tracking: pain.  

Anyone who\’s dealt with sufferers of chronic pain, or even been in a bad mood due to a headache or backache, shouldn\’t find this surprising.  Being in pain, especially day after day, has real consequences for your mood and outlook.  You can see this often in older people, whose bodies can cause them significant pain due to any number of ailments.  The word I\’ve often heard or such people is \”crotchety,\” but \”crabby,\” \”volatile,\” and \”ill-tempered\” have also been applied.  Because nonverbal or low-verbal people can\’t easily communicate that they\’re hurting, they may also display these less pleasant behaviors, and it\’s not so easy to get treatment for the issues when the person can\’t tell you what hurts, when.  

Then, too, the person may not even realize their suffering is abnormal.  They may be so used to it that they don\’t even think to ask for help.  I\’m a highly verbal person, but I actually spent most of my childhood having regular constipation, which caused me pain on a regular basis.  I wasn\’t aware this was unusual, and thus that issue continued right up to the point that I accidentally nuked my digestive tract and developed the opposite problem, which now lingers when I eat too much sugar or really don\’t eat a perfectly healthy diet.  

One of the common themes I see in \”my family\’s experience with autism\” books and \”fix your child\’s autism with my system\” is the insistence that when the \”problem behaviors\” go away, the autism is cured or lessened.  This is… mostly a misunderstanding, I\’d bet.  The child or adult doesn\’t act up as much, or act as unusually after This or That Technique is tried.  The person is pronounced \”not autistic any more,\” and the day is saved.  

The change in the person\’s behavior is because their body is functioning more healthily, and therefore they are suffering less.  When people don\’t suffer, they\’re less inclined to be angry, frustrated, and lash out at setbacks and smaller disruptions.  Their behavior will change, because their internal state has improved.  You also have a happier, healthier person, which is really the more important part if you ask me.

(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.)

Product Review: MagnusCards app

A few weeks ago, I was told about an app called MagnusCards.  It\’s basically a collection of sets of directions for various life skill subjects.  Basically, the idea is to have a reference for various day-to-day activities, with pictures, for people to be able to look at and use as needed.

The app is for iOS and Android.  I tested it on an Android tablet.  I\’d say it\’s probably more geared for phones, but you can still manage on a tablet.  I mainly opted to review this app because it has information on my local library system, meaning someone from that library system actually went to the trouble of making these and submitting them to the app.  I actually went and visited the nearest branch, and followed along with the relevant cards while I was there.  I\’ll talk about that below.

The \”cards,\” or sets of instructions, come in categories like Shopping, Personal Care, Leisure, Social, Food, and Travel.  They are all free, and written in very simple English.  You can download cards you like, or cards that are most relevant to your life.  Some of these cards are from Canadian or even British organizations, so it\’d be wise to check the cards before downloading them.

When you\’ve chosen a category, you can then choose a contributing organization or a specific card.  So, in Leisure, you can choose Kent District Library, or scroll down to choose \”Kent District Library- Logging into a computer at the library.\”

You are then presented with the first sub-card, which is usually an introduction to the topic.

You can then swipe left and right to navigate between the sub-cards, which describe the process and also tell you what things you need to do the process or activity.  There are cards for getting a library card, searching the catalogue, using the self-checkout machines, logging into a library computer, and a more general \”what to expect\” card, which basically describes what the library offers (much more than just books!), the presence of helpful staff members, the availability of rest rooms, and other details.

In looking through these cards at KDL, I learned that you can check out a pair of noise-canceling headphones.  This is particularly helpful on the first floor of my location, where kids tend to congregate (and play Fortnite on the public computers).  They were big, over-the-ear, noise-isolating headphones, and they did help, though not as much as my personal pair that has active noise-canceling.  But it might be a bit much to expect every library location to shell out for a $200 pair of headphones, and then replace them when they get damaged.  Libraries, unfortunately, are not rolling in money.

The cards are a mix of qualities.  The KDL ones were of pretty good quality, but the Social cards were extremely basic, sometimes to the point of absurdity.  Considering the complexity of social situations, even things as simple as greeting people can get complicated, so I probably shouldn\’t be too harsh in my judgments here.  I guess it\’s the wistful and tired autistic in me wanting social stuff to be boiled down to easy, simple directions that I could just follow and everyone would be happy.  No such luck.  For basic social interactions and people who don\’t need to perfectly pass as \”normal\” these are better than nothing, at least.

I was reasonably pleased with Colgate\’s series on tooth care, which I thought was pretty good.  There were also a good number of well done \”simple recipe\” cards.  not all of them are the healthiest choices ever, but simple does not always equal healthy.  The Cleaning cards were also fairly decent.

I didn\’t get too indepth with every category, but my best guess is that the more abstract the subject, the less helpful the cards will be.  So, while the card for \”Dealing with Anxiety\” had some helpful pointers in general, I didn\’t find it personally terribly relevant to my Generalized Anxiety Disorder.  Most of the Social cards were in the same boat, and most of the Money Management cards.  Something is still better than nothing, anyway.

Overall, I found the app fairly easy to use, if a little basic.  I would very much like to see the option to make your own cards.  This idea is a good one, but other than my library system, there\’s nothing immediately local to be referenced here.  I could see an enterprising parent putting together this app and the concept of Social Stories into one extremely helpful, meltdown-reducing package.

Another thing I was hoping to see, but mainly didn\’t, was a more non-verbal-friendly approach.  There are a good number of autistic people, especially children, that don\’t read very well, or even at all.  I\’d imagined that perhaps there might be some cards where the reading was optional.  At least for now, that\’s not the case.  The pictures are more accompaniments to the written directions than they are directions themselves.  Again, this isn\’t really surprising, and I\’m not sure I\’d do better if put to the task.  But it\’s a thing that could possibly be improved upon.

In the end, I probably won\’t keep this app for my personal use, but I\’m not its intended target anyway.  This app is geared more towards people who don\’t have personal care and life skills memorized, or may need reminding for how to do them.  It can also ease the load on a parent, who may be asked repeatedly how to accomplish some of these processes, or serve as a support service in helping an autistic person achieve independent living.

TL;DR:  A good, though very limited, app for autistic people who need extra help with life skills and personal care skills.  Has directions for the my local library system.  Needs the ability to make your own cards.  

Legwork and Life, week of 7/17/19

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

This week I\’m just tired.  Toro, the parrot I mentioned last week, is home with her moms as of yesterday.  Taking care of her was an effort, and she definitely has a mind of her own.  She even gave her moms some trouble, when they came to get her.  Silly thing.  I\’m sure she\’s a lot happier now that she\’s home, though.

  

I\’m still coughing on occasion, and my nose isn\’t entirely back to normal.  I\’m not sure what the deal is now.  The doom algae out back was growing nicely, so perhaps that\’s it.  I\’d had more psychological problems last year when that was the case, though, so I dunno if that explains it.  The heavens opened up and it just sheeted rain for about a half hour yesterday, which seems to have torn the algae to shreds.  If I do better today, that might be a good sign that the algae was the problem.  

I\’m not sure today will be super different, though.  I woke up quite early today instead of sleeping until my usual time.  That might simply be a temperature issue, but it\’s really not that hot out yet and I was using a lighter blanket as well.  

In the meantime, I\’m trying to do the bare minimum for most of my activities, which isn\’t always working out due to the enthusiasm of others.  That\’s life, but I can\’t exactly get my lost energy back, so I really hope life stops complicating itself for a bit so I can recover mentally and emotionally.  It\’s kind of been one long expenditure of energy, starting at Games Done Quick, continuing with the cold, and then taking care of Toro.  If I\’m fortunate, I can have a bit of a breather before October, Month of All Birthdays, arrives.  

My outdoor adventures with black raspberries are mostly over, unfortunately.  The season is fairly short, counted in weeks, but only like 2-3.  I still have some berries left from the last outing, at least.  I\’ll probably freeze half of them, or however much I need to make a pie.  I don\’t think I\’ve ever actually made a fruit pie before, so hopefully I can find a good recipe.

I didn\’t come away from my adventures entirely unscathed this time.  I appear to have a great number of tiny bumps.  They itched at first, but I washed them with soap and now they don\’t.  Not sure what the deal is.  They\’re not red since I washed them, but the Internet isn\’t being super forthcoming on what they are, possibly because there are a lot of possibilities.  They\’re not making me miserable, at least.  I ruled out poison ivy, poison oak, and poison sumac.  My best guess is oak mites, which apparently die if kept indoors, so I guess if I don\’t sprout any more, that\’s probably it?  

I guess I can check with my doctor about them when I see her tomorrow, too.  She\’s a big proponent of outdoor activities, and also a mom of four, so she\’s probably seen whatever this is before. 

Assuming the bumps are nothing horrible, the raspberry plants seem to be coming into season, so I might go out for a small harvest of those.  I\’ve seen a lot fewer of the regular raspberry plants, but there were several at a local park, and another near my parents\’ place.  Definitely not enough to make a pie out of, or even a substantial side dish, but cool to see and fun to snack on.  Wild raspberries taste just like the ones you find in the store, except perfectly ripe and always flavorful.  I guess, if I found enough, I could put them into a mixed berry pie with the black raspberries?  

Reading the Research: Picky Eating

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 deals with a common trait among autistic people: extremely picky eating.   It\’s an order of magnitude beyond \”she just won\’t eat brussels sprouts,\” mind you.  The article mentions a child that would only eat bacon and drink iced tea, which… you can imagine isn\’t exactly nutritionally balanced.  But I\’ve also heard a lot of parents talk about a \”white foods\” diet, where their child would only consume bread, pasta, and dairy products without a fight. 

This type of odd diet preferences is apparently so common in people with autism diagnoses, that these researchers suggest adding it to the diagnostic criteria for autism.  I guess it\’s not like the criteria are that helpful anyway…  So adding this might clue pediatricians into recommending a screening earlier. 

Which is I guess another way that people like me will probably become rarer and rarer.  I escaped diagnosis until I was almost 21, which was a bit late to really do much but pick up the pieces and help me put them into some kind of order as an adult. 

Maybe it wouldn\’t have caught me.  I guess my eating habits were more preferential than… specifically restricted like the above examples.  I strongly preferred to eat bread and pasta, so much so that my dad dubbed me \”the bread girl.\”  I was sufficient stubborn on some points that this was established:

Don\’t be fooled.  That list was in effect a lot longer than 5 months.  It was changed on occasion, as you can see by the erase marks.  As I got older, I made more of an effort to eat things I wasn\’t fond of or didn\’t like.  At present, I eat everything on the above list: fish (occasionally, when it\’s sustainably fished), broccoli (for breakfast, regularly), cabbage and cauliflower (only when it\’s put in front of me), and peppers (when they show up in recipes).  The last time I posted this, I commented that it\’s lucky for my mom I didn\’t realize cabbage, cauliflower, and broccoli are all part of the same cultivated wild plant, and I could have gotten six foods for one if I\’d just said \”any descendant of the wild mustard plant.\” 

As of now, I don\’t think I\’ve tried kohlrabi.  Mostly new/untried vegetables fall in the \”I\’ll eat it if it\’s put in front of me\” category.  That includes the wild foods I\’ve been foraging with my friend, except they kind of get put in front of me by virtue of the fact that I\’ve labored to acquire them.  Honestly, she provides most of the impetus/is usually the one to initiate these adventures, and I mostly just come along for the ride but do my best while I\’m there. 

I think the type of restrictive eating often found in autistic people might be a combination of a few things.  First, it\’s a way to have some control over a terrifying, painful environment.  Humans do poorly if they suffer and have no control, so people of all ages will try to assert some control in order to suffer less.  This is a normal response, much as it may not seem it. 

Second, bread and pasta are both very quick-convert forms of energy, and my tongue knew it.  I don\’t really know how to describe this, but even today, when I eat plain pasta or plain bread (not often these days) there\’s this inherent \”yum\” factor.  It\’s like my body recognizes this food will very quickly convert to sugar/energy, and tells me so immediately.  To this day, I prefer to have some of my pasta plain, rather than all coated in sauce, because of this.  (Of course, white bread and plain pasta are refined foods, and should be avoided, so I mostly do.)

Third, there\’s comfort in familiarity.  This is different than the control factor I listed, though it\’s connected to it.  Familiar foods, foods you can count on to have the same texture, color, and flavor, are soothing in a world that is often so very confusing and full of inconsistencies.  If you can come home after school every day and look forward to eating the same delicious meal every night, which you never get tired of, why wouldn\’t you?  To my mother\’s horror, I\’m sure, I did this in my junior year of college.  Macaroni and cheese, every dinner of every week night.  It made shopping very simple, too: I just needed to make sure I had milk and butter.  My lunches were more nutritionally complex, at least. 

As I\’ve aged, I\’ve personally attempted to expand my diet beyond what my mother achieved.  She actually did a pretty decent job in introducing me to various kinds of foods, and so I\’ve built on her good example.  I did still have a poor gut reaction to curry when I first tried it, so I guess that never made it onto the dinner plate, but everything else has been merely a test of taste buds and mental fortitude. 

(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.)