Friday, June 28, 2019

Double Empathy

Autism is an actively lived condition.  Thousands, even millions of people have it.  Most of them now adults.  In that time, we've all been thinking about the treatment we've had as children, and as adults, and what autism is, what it means for us, and what we should do because we have it.  

The answers to those questions vary by the person, but like any communicating people, we have, as a group, gotten together in places and done some thinking.  New philosophies have risen based on those thoughts.  One of these is the Double Empathy problem.  

The basic understanding of autism is that some people are born different, the difference is in their brains, and that makes them have trouble communicating with others.  This would be the single empathy problem: autistic people, we're told, have trouble communicating.  

The thing is, it's not that simple.  Scads of personal testimony from autistic people networking with other autistic people have led to researchers doing studies on it... and it turns out we communicate with each other just fine.  The problems come when you mix autistic and neurotypical people.  Why is this?  

It's because neurotypical people are set in a single, accepted way of communication.  Specifically: verbal speech in very limited, specific patterns, plus a layer of non-verbal body language reading.  Anyone who doesn't communicate in that manner, or not exactly in that manner, is deemed "broken" and summarily ignored or not taken seriously.  

Autistic people, especially adults, don't do that as much.  We understand and recognize a broader range of communication, because we ourselves use a broader range of communication.  We've spent years learning to be polite and respond appropriately and trying to think in ways unnatural to us, and it's granted us a form of empathy that neurotypical people... entirely lack.  Because if all you use is one form of communication, you are blind to any other kind of communication.  

Research is beginning to bear this out.  I don't expect the results to change much as these studies are repeated for scientific rigor.  To get an idea of the kinds of calculations you should be doing when faced with an autistic person (or really, any person that strikes you as "different"), check out this example behavioral analysis of a child named Sam in a school classroom.  How many of those factors occurred to you, when presented with the restless child at circle time?  

This is the Double Empathy problem.  Yes, autistic people have trouble communicating to neurotypical people.  But no, that's not a 100% us problem.  Communication is a two-way street, requiring perspective-taking from both sides.  Neurotypical (NT) people don't communicate back to us in ways we understand, but we're still blamed for not understanding.  See how this works?  You'd think, if neurotypical people were so ideal and wonderful and everything we autistic people should strive to be, that y'all could communicate back to us in ways we understand.  But that's not the case.

In more visual terms:

Autistic person ------> NT person
(difficulty communicating and being understood)

NT person ------> Autistic person
(difficulty communicating and being understood)

And yet:

Autistic person ------> Autistic person
(no difficulties)

Double empathy.  Double.  Two-way.  Neurotypical people are part of the communication problem.  We appear to be have different sets of social skills.  Autistic people are demanded to learn neurotypical social skills.  Maybe y'all should learn ours, too.  

Wednesday, June 26, 2019

Legwork and Life, week of 6/26/19

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

The weirdness with my diaphragm seems to have worn off entirely, which I'm really glad of.  I don't really understand how this weeklong experience happened without any pain, and still had such important side effects, but the human body is a weird mystery, so whatever. 

Speaking of weird, I went with friends to go cattail pollen collecting!  You can use cattail pollen as flour, and we wanted to try it, so off we went.  It was quite an endeavor, what with it being hot out and having to push my way through the head-high cattails.  It's no jungle, but it's probably the closest I'll get to traversing something like that.  I didn't have sufficiently waterproof footwear, and quickly got soaked socks and such. 

I used a technique recommended by a seasoned harvester: grabbing a gallon jug, cutting a hole in it, inserting the pollen-laden cattail head, and shaking it.  This allowed me to collect mostly pollen in my efforts.  The stuff is bright yellow, as you'll see, and I was quickly covered in pollen.  Fortunately I'm not allergic. 

The results of my labors had to be sifted for bugs and plant fibers, which I did using a sieve to get the big stuff, and then cheesecloth for the smaller debris.

Fiber and bugs certainly won't kill you, but they'll mess up the texture of your baked goods.


The final result!
I want to say I was out there collecting for maybe 15-25 minutes, and we started collecting relatively early in the pollen window, so we had to search fairly hard for cattails with pollen.  Which is probably why the end results only came out to half a cup.  Still, that's more than enough for a recipe of pancakes, and that's fine with me.  If I like the pancakes and flavor, I'll get a larger batch next year.  

Other than that, everything is Summer Games Done Quick.  It's a charity event for speedrunning video games, complete with prizes, commentators, interviews, and lots of happy people.  This one sponsors Doctors Without Borders, which is a very deserving charity that helps people worldwide, and it will likely raise at least 2 million USD by the end of the event, mainly in micro-donations from thousands of video game lovers.  

As a child I was prohibited from playing video games, so I missed the chance to play a lot of the games that come up in events like these.  It's really cool to see them played so skillfully, and for such a great cause.  I've caught the runs of a few games that I did get to personally play, as well as some games I've never heard of before.  

I'm enjoying the event, but I do notice it can be kind of overwhelming on a sensory level.  Having someone almost always talking means my brain doesn't rest and focus as much.  That might just be a me thing, because I know some people put on the television for company or whatever.  I don't know, but either way, I've made sure to schedule in some "I'm not watching" time during games I'm not interested in watching.  Which is how I had time to write this post!  

The event will go until the wee hours of Sunday morning, which is why I tried to work ahead last week.  I mostly succeeded.  Whew.  

Monday, June 24, 2019

Reading the Research: Leaking Blood-Brain Barriers

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article is a step forward in our ability to test chemical interventions.  While the study itself calls out specific disorders, like Huntington's disease and Parkinson's, the fact is that autistic people also tend to have leaky blood-brain barriers.  

The job of a blood-brain barrier is to screen out toxins, hormones, and neurotransmitters not generated in the brain itself.  This protects the brain's environment so it's not affected by things the liver, kidneys, and other detoxification systems should be handling.  If it leaks, the brain has a much harder time doing its job, and you're more likely to suffer depression, anxiety, fatigue, and brain-specific autoimmune disorders (which includes Parkinson's).  Clear that up, and the autistic person suffers less, which also leads to less difficulty communicating, handling new situations, and managing their life.  

So it seems these scientists were effectively able to grow brand new blood-brain barriers using stem cells from donors.  Like, cells from Person A became new blood-brain barrier with the same defect as Person A's would have inside their body.  That really is science-fiction territory, because you can literally test out drugs on the created blood-brain barrier and figure out which ones have the best chance of helping, on a person-to-person basis.  

That seems to be the idea behind this study and several others this team is working on, given the name of the program: Patient-on-a-Chip.  I can't imagine this sort of thing is going to be cheap, especially in the beginning, but it is potentially highly useful.  Like computer parts, the price will come down as the demand increases and people learn to make the process simpler and more efficient.

I actually have no idea whether the leaky blood-brain barriers that autistic people have are genetically induced or environmentally affected.  It's probably some of both, and I'd bet you could induce environmental changes in a grown blood-brain barrier.  It's just not exactly what they're doing right this moment.  Still, even at this stage in the research, this is pretty cool.  It may well help a lot more than the millions affected by disorders listed in the study.  Perhaps in the future you'll be able to send a sample to a lab, and receive a scientifically rigorous recommendation for anti-depressants, as well as non-chemical interventions to help solidify that barrier.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Friday, June 21, 2019

WYR: Dear Parents- Don't Go Alone

http://www.thinkingautismguide.com/2019/05/parenting-kids-with-disabilities-how-to.html


I'm not a parent.  I'm an adult that used to be a kid raised by parents.  So my insight here is limited.  What I do have is a background in psychology.

Humans are a social species.  We developed around the concept of tribes, in-groups, essentially.  Our technology level has far outstripped this concept and made it possible to be part of an absolutely dizzying number of "tribes," but the basic need  to be recognized, understood, and have people to lean on remains the same.

Being an autism parent, I've come to see, can be a very alienating experience.  Your kid(s), regardless of their specific capabilities, is/are going to be a lot more difficult to raise than neurotypical children.  That is not your fault.  It is nobody's fault.  It simply is, and it falls to you to handle it.

That does not mean you should handle it alone.  The same advice given to autistic self-advocates applies to you too: Find Your Tribe.  Look for community resources.  My own community has at least three parent support groups specifically for autism parents (one is entirely in Spanish!).  Call autism organizations like the Arc and the Autism Society.  Check into group-finding services like MeetUp.  Check on forums, in online communities.  Ask around in your church, if you attend one.

The phrase "no man is an island" comes from a piece of poetry, but it's particularly true in the modern age.  The house I live in, I couldn't build.  The computer I work on, I built from component pieces, but I couldn't build those pieces if you put the raw materials and tools in front of me.  The food I eat, I didn't grow and don't really know how it came to the grocery store.  If my car breaks, it's almost immediately a trip to the mechanic, because I can only fix very minor problems with it.  We live in a very interconnected, very dependent world.

Please, if you don't have a support network for this kind of thing, you need it.  Fellow parents have insights, ideas, and comradery.  One of the major indicators for how well an autistic kid will do in life, is how well their parents are while raising them.  Take care of yourself.  Find people that support you.  Crises will happen, but they're easier handled with the help of others.

Find your tribe.  Find respite care.  Find what you need.  Please.  

Wednesday, June 19, 2019

Legwork and Life, week of 6/19/19

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.

Poor sleep seems to be the order of the week.  Well, poor sleep and bad dreams.  Yesterday morning's involved acupuncture from hell, where each needle was scream-inducingly painful.  There were a lot of needles, and afterwards my brain added insult to injury by simulating free candy afterwards... but only the kinds I can't have because they're made with cow and pig bones (gelatin).   I'm really not sure what I did to anger my subconscious, but it must have been something really bad.  

Possibly it's the poor sleep.  The thing is, I'm not really sure what I'm doing wrong.  I have the room darkened quite thoroughly.  I just acquired a body pillow that seems to be much more effective in lining up my back and joints.  I have much fewer cracking joints on waking up.  

I guess there's the fact that my grounding mat is wearing out?  Maybe it's not so effective now that it's pulling apart?  But I was never convinced that was a major issue.  So I guess I can replace it with the nearly flawless one I've been using at my computer and see if it makes a difference.  I'll let you know if it does.  I've been somewhat curious on that front, but lacked conclusive proof either way.  

Other, possibly related news: I upset my diaphragm (or possibly lower lungs?) by leaning over my couch for a few minutes.  I'm not really sure what happened, but the organ(s) in question were not forgiving.  I spent a lot of the weekend unable to breathe very well, and constantly feeling like my lower middle wouldn't expand properly.  It made it really easy to run out of breath.  Very unpleasant.  Not recommended.  

Basically, it put me in a slightly oxygen deprived state at all times, which made me very grumpy.  I didn't do a whole lot due to that.  A hot bath helped somewhat, but didn't really fix the problem.  It did, at least, let me try out some Japanese import bath salts (label in Japanese, a gift from a friend), which... the label was lavender, the powder was orange, and it turned the bathwater bright, fluorescent yellow.  Super weird, no idea why.  But it smelled nice, at least.  I didn't dare mix it with the epsom salts after the overdose debacle last time, so that'll still have to wait another week or so.  

Anyway, my breathing seems to be more or less back to normal now, for which I am very grateful.  Speaking of things that had to be put back to normal, this weekend my spouse and I attempted to fiddle with my tablet to make it more functional.  The process is called "rooting" and it basically lets you customize every aspect of the software in the device.  It also voids your warranty in most cell phone companies.  The thing is, this device already sports a thoroughly cracked screen, and the warranty doesn't cover that.  I'll be needing to get a new device soon, so as to avoid glass splinters.  So rooting the tablet doesn't really change a whole lot.  

Unfortunately, it turns out the device actually can't be rooted, due to weirdness in the hardware and software.  But the attempt did wipe all my data off the tablet, so I spent a good part of the weekend putting back my apps, games, and interface.  Not my favorite use of time, but it wasn't awful, and it's all done.  

Next week is Summer Games Done Quick, which is a charity video gaming event, and basically it means I'm going to have zero time.  So I'm trying to work ahead this week.  Made some small progress already!  Hopefully more progress will ensue.  

Monday, June 17, 2019

Reading the Research: Categorizing by Secondary Conditions

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 has an unusual take on reducing the trashbin nature of an autism diagnosis.  The saying, attributed to Dr. Stephen Shore, is, "if you've met one person with autism, you've met one person with autism."  The meaning being that every one of us is different, in many different ways.  We have common experiences, but the way our autism and other differences manifest can be startlingly different.  To the point of utter absurdity.  

Apparently these folks from Rennselaer Polytechnic Institute think a viable way of splitting the spectrum would be to map out our other conditions and categorize us by those.  Their test population was the data of over 3,000 autistic children, which they ended up placing into three subcategories.  Roughly a quarter of the children had high rates of gastro-intestinal issues, immune disorders, seizure disorders, and sleep disorders.  Another quarter had lots of developmental delays, which would include intellectual disability, ADHD, cerebral palsy, and language delays.  The final group, with the remaining 50%, had only slightly higher incidence rates of those two issues when compared to typically-developing children.  

I've written before about my reluctance to greenlight splitting the autism spectrum.  I think it could serve as a dangerous divider between the autistic self-advocates and the children who suffer as we do, simply because the given diagnosis might not match exactly.  It's already hard enough for us to speak, never mind be heard, and then actually listened to.  We're not asked to speak and advocate for ourselves.  We're told to be quiet and have still hands and do as we're told.  

It's not a great situation and it's particularly stupid when we, the grown autistic people, have the first-person view and understanding that parents, professionals, and teachers can only guess at.  I can walk through a grocery store or a business and point to things that might send an autistic child into a meltdown, but I have serious doubts someone will value that enough to actually pay for it.  

I do think that pointedly noting how many autistic people suffer from which comorbid (co-occurring) conditions is probably a good thing.  I have yet to be convinced it's as simple as these three categories this researcher team has come up with, given the riot of diversity I've seen in the autism spectrum.  Either way, it's an interesting idea, and I'll be curious to see where it goes.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Friday, June 14, 2019

Sensory-Alert Grocery Shopping, part 2: Sounds and Policies

Last time I talked about how I was invited along to the corporate Meijer offices with Autism Support of Kent County.  To prepare, I went to my local supermarket and trawled through the place, evaluating it for sensory-friendliness, and put together a short presentation of what I found.

Last week I went over about half the presentation, including the various issues and curiosities with the lights in the store, as well as the pitfalls of smell.  Today I'll finish up with the sounds I encountered in the store, as well as store policies and ideas for changes.
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Like smell, sound is a facet of the senses that's best kept very simple and minimal while shopping.  The fewer noises, the better.  I was surprised as heck that the store's music was actually set quite low, making it quite sensory-friendly.  Normally that's the first offender in every store and restaurant I set foot in.  They did somewhat make up for this bit of friendliness by having periodic ads interrupt the music, which is both sensory-unfriendly and highly obnoxious.  Still, that was maybe every 5-10 minutes, not constantly.

Speaking of ads, there were many.  The PA system was just the start.  The shoe section had a massive TV screen with an ad for a shoe brand, complete with flashing pictures and sound.  Ew.  There were a couple smaller, tablet-sized ads in the alcohol section, though I couldn't say for sure they had noise or not.

By far the most painful sound I encountered was the mobility devices' backup noises.  Essentially high pitched shrieks, they grated on my ears like nails on a chalkboard, only louder.  I don't begrudge people use of the devices, but I deeply wish the devices didn't sound like construction equipment when backing up.

I was, however, rather pleased at how most of the store's other operational sounds, like the sound of an item being scanned, the overhead fans, and even the theft alarm, were almost muted and polite.  I recall, growing up, when barcode scanners hurt my ears.  They emitted a high pitched "sckreek!" sound for each item.  The ones at this store were several octaves lower.  Not perfectly painless, but much better than it could be.  The theft alarm makes a "boop boop boop" sound when triggered, roughly around middle C on a piano keyboard.  So quite tolerable, while still being alarming if it goes off near you.

I wasn't as thrilled with the talking self-checkouts.  If the aim is to reduce the amount of noise-clutter, having a half-dozen registers speaking near-simultaneously is... not great.  I also happened upon what I assume is a malfunctioning piece of refrigeration equipment in the vegetable section, which made a high pitched whine I could pick out from several aisles over.


Shopping carts.  They're essential, but they come with just... so many horrible noises.  The wheels on the carts are probably what most people think of, and they're right to do so.  Dud wheels can make all kinds of deeply unpleasant sounds, from a general thudding (crud buildup) to the improperly greased squeal.  The range is impressive, and it's all horrifying.

What people may not think of, though, is the noises carts make when they're unstacked.  The carts at this (and most stores) are made of metal.  They make loud crashing sounds when pulled apart, and when the child seat is lowered.  I had some thoughts about this, which included little rubber bits at points of impact.  The actual discussion also pointed out that plastic carts are an option, though I shudder at the environmental impact of that decision.  

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The fun bit about this section is that Meijer actually already has a lot of good policies in place already, just in the course of trying to make the shopping experience optimal.  The key here is predictability.  Meijer already labels their departments in absolutely massive lettering and abundant signage, and the stores themselves tend to be organized similarly.  Two main entrances, one side leading to the food, the other to the non-food.

The exact placement of the departments can vary somewhat by the store, but between the aforementioned signage and the general rule of "food on one side, clothes in the middle, everything else on the other side" you can usually get where you're going fairly quickly.

The one exception to the excellent labeling is the fruits and vegetables department, which is so utterly lacking in signage I just kind of sat and stared for a minute.  I have no idea why that's the case.  When I brought it up at the meeting, the official wasn't sure either, but thought it might have something to do with how often those sections are reorganized.  I still think signage could be managed, though.

Other immediate ideas included eliminating the current policy of greeting customers throughout the store.  Like Walmart, Meijer has greeters at the entrance.  Those are anxiety-provoking enough for someone like me.  Making the stockers say hello to me at random just makes me want to melt into the floor and die.  This sentiment was echoed by at least one of my autistic adult contacts.

Another thought I suggested was putting together a Social Story.  Ideally these are personalized down to the exact store you're going to be going to, but for someplace like Meijer, even a broad-spectrum one would be better than nothing.   The idea is to give the child or adult a sense of the place you're going, what to expect there, and what things are expected of them.  This doesn't directly address sensory overload, but it could include another thing suggested during the meeting: a sensory map.

The idea of providing a map to a business isn't new.  Noting areas that might overload the nose or ears, though, is something I've never seen in a retail setting.  Marking off the perfume aisle (smell), the alcohol section (ears-crashing bottles), and the cleaning products aisle (smell again) as potentially harmful areas could make a shopping experience a lot more tolerable, especially for people new to the store, unfamiliar overall, or people with memory problems.


There were two major ideas that were suggested in my various reading materials.  The first is the more feasible one, and is already being done in grocery stores in Australia and Britain.  It's fairly simple: a major complaint from autistic people is that stores are too loud and overwhelming.

The solution? Turn everything down, for an hour or two every week, or a day or three every month.

Turn off in-store ads and flashing signs, pause cart collection, and turn down the lights.  Based on my walkthrough experience, I expanded on this little by also suggesting they turn off the pumped in bakery smells and avoid stocking cans and bottles.  To this I'd probably also add "silence the talking self-checkouts."  Doing these things vastly reduces the amount of sensory information pushed onto shoppers, which is awesome for people with overload tendencies.


The more expensive and less likely accommodation I saw was a sensory-friendly room.  This is a phenomenon I tend to see more at conventions, but in all honesty, I could really use one everywhere I go.

The idea is to establish an accessible, quiet room with neutral decor and places to sit while someone tries to wind down from a meltdown.  Small autistic child having issues?  Go to the sensory room and get out their favorite stim-toy.  They calm down, and you can get back to your shopping.

In conventions I've been to, this room was literally as simple as "we turned off the lights in this panel room and left like three basic chairs in there."  It wasn't exactly comfortable, but it was kinder on my senses than the convention overall.

My additional suggestions for a room like this include offering disposable earplugs, which are a common assistive technology for people with sensory sensitivities, and placing copies of the aforementioned sensory map and Social Story there.

Really though, it doesn't need to be fancy.  It just needs to be there and accessible.  I don't really think Meijer will go for this idea, though, because any public space they're not using to display products is lost income.

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I included this, in the main, because it seems negligent not to do so.  The Autistic Self Advocacy Network has taken great pains to establish easily-digested materials on the subject, and the Autism Society has put together an actual program you can qualify your business for.  It seemed criminally negligent not to at least say, "hey, these are cool, maybe check them out?"

In all honesty, though, in a perfect world, I might be able to make a living simply by getting hired to walk through places and point out the autism- or sensory-unfriendly parts of them.  I can hear things that most people can't, and am sensitive to bright lights in a way most people can't imagine.  I'm also fully verbal and can communicate that information even while stressed.

In this very non-ideal world, I'm not honestly sure there's enough market for such an idea.  If you know someone who'd like to know if their business is autism-friendly, though, give me a shout.  My rates are very reasonable. : )

Wednesday, June 12, 2019

Legwork and Life, week of 6/12/19

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.

Last week I talked about how awesome an Epsom salt bath was.  Turns out they have diminishing returns, based on how much magnesium is in your system!  Also, like any other substance, you can absolutely overdose on magnesium.  One symptom of magnesium overdose is anxiety!  Irony sucks.  I was hoping to have a nice relaxing bath and ended up with anxiety dreams for the next four days.  

Before anyone gets worried, it was only four days because I routinely take a large-ish dose of magnesium in supplement form, so those kept my levels a bit too high for longer than they had any right to be.  After a few days, I skipped a single dose and the anxiety dreams stopped.  

This is kind of the story of my life: find something that seems to help, try to use it regularly, find out it has significant limits, doesn't work all the time, or actually doesn't help as much as you thought it did. Presumably this is life's way of telling me that "no, nothing is ever going to be easy for you."  

Anyway, I'm not ruling out Epsom salt baths as a thing, but they're clearly more of a "once a month, maybe" thing, rather than a "I can do this once or twice a week and it's super nice!" thing.  

There's been no word from Meijer about the review of their store or making them more sensory-friendly, but I'm developing a spreadsheet of audit criteria using the materials I put together for the presentation.  I figure I can probably get some use out of it when I shop in other stores.  I'll probably run it by my doctor, who also has sensory issues.  Plus if Meijer follows up, I'll have something nice and fancy-looking to bring to the next store I audit.

Other than that, I've been mostly keeping busy with house maintenance and improvement.  Nothing super impressively major, just a slightly different setup for the downstairs TV, moving a couple small furniture things around, and rearranging some of my space in the bedroom.  Also this:

whiteboard filled with chores on index cards

With luck, the board will help me and my spouse keep on top of weekly, monthly, and yearly responsibilities.  Sadly some of these chore-cards will never actually get turned over, because they're on an "as needed" basis.  Things like adjusting the thermostat, resetting the clocks whenever the power goes out or daylight savings time hits, etc.  Still, it's good to have them where they're visible and easily-referenceable.  

Monday, June 10, 2019

Reading the Research: Receptive Language

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article is right in line with last week's article, showcasing another neurological autistic oddity.  This time, rather than social behavior patterns, it's a reactive behavior, which is even more curious to me.  Essentially, this study tested whether (probably) autistic babies would turn their heads to pay attention to new and interesting speech sounds.  They didn't do so as much as their neurotypical counterparts.

In normally-developing children, this speech-focused selective attention helps teach the baby the correct syllables and sounds to communicate with their family and the people in their area.  This reactive learning is what psychology calls "receptive language."  But it seems the (probably) autistic babies weren't as good at recognizing relevant speech to learn from.  

The differing attention patterns of the autistic versus neurotypical babies strikes me as a good reason that some of us develop speech later, or even never.  I'd always assumed it was more of a "slower brain development" thing, or a "sensory sensitivities interfering with learning" thing and I suppose those might also factor in.  Usually the story of autistic lives is "here's my laundry list of diagnoses and complicating factors, it's as long as your arm."  With so many extra drains on the child's mental resources, it would be hard to learn at the same rate an unhindered child would.  

This is honestly fascinating, but I really wonder if it applies to me.  As of a few years ago, minimum, my brain has had the uncontrolled tendency to drop whatever it's doing and listen to speech over anything else.  This was great for conversations with friends while I was wearing headphones, but very bad for ignoring a TV in a waiting room or conversations I'm not a part of.  Or, really, ignoring one conversation in a public space to listen to another.  So it's kind of like my brain went for the polar opposite, I guess?  

I couldn't tell you what I was like as a baby, though.  I don't recall having any specifically focused attention as an elementary school child, but there's a good chance I simply wasn't self-aware enough to know if I did or not.  At the time, I had very different priorities, like not getting bullied, passing my classes, and surviving each day.

If pressed, I suppose it might've been possible I developed this way?  The thing is, pretty much as soon as I could read, I dove into books.  I had a knack for reading, and generally had a book with me wherever I went.  Over the years, I osmosised a good sense for grammar, as well as gained enough exposure to how US English spelling works that I didn't have to try that hard at it, either.  

I do recall various incidents with people correcting my pronunciation of various $1 and $5 words I learned from books, because English is a flighty language that steals words from everywhere, and pronunciation rules that work in English don't work in French or Spanish or even Latin.  I recall pressing my mother on this unpredictability a few times after being corrected on a word's pronunciation, and she essentially shrugged and said that English didn't really like to follow rules, and that I shouldn't be bothered by it.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Friday, June 7, 2019

Grocery Shopping: Part 1 of a Sensory-Alert Walkthrough

Last week Autism Support of Kent County, the organization I volunteer with, was invited to the corporate office of the Meijer, the local chain of super grocery stores. Meijer is hoping to make their stores a bit more sensory- and autism-friendly. I was invited along (after asking if I could be), and so in order to be properly prepared, I took a trip to the store I usually shop at.  There, I walked through the whole store, doing a slow but thoughtful shopping trip.

I came away with six pages of stream-of-consciousness notes, and roughly two dozen pictures.  After getting home, I condensed those into four topical headers and organized the information into those.  After that, I put together a very hurried and extremely unpolished presentation, which I will, I suppose, re-publish here with apologies to your eyeballs.  I'm going to do it in two parts, because otherwise it's too long.  

Before I begin, please understand this is a single store I visited, not the chain at large.  It's one of the stores I shop at, in large part because it carries so much of what I need, at reasonable prices.  There are a lot of good things about Meijer that may seem ignored in the tide of criticism I offer here.  Check the second post, which will cover Sounds and Store Policies for a lot of those.

Main slide from a presentation, titled Gaines Township Meijer: An Autistic Walkthrough.  Main topics are Lights, Sounds, Smells, and Store Policies.

I haven't made Powerpoint-esque presentations for, um... something in excess of seven years.  Things have slightly changed when I wasn't looking, and I wouldn't say I was good at them in the first place.  You'll see what I mean later.

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Slide from a presentation, titled Lights.  Subtopics: Overhead Lights and LED Light Strips

For lighting, I was trying to get the basic understanding for design choices across.  Natural light or at least incandescent light over fluorescent lights.  Warm, soft white lights over harsh blue white lights.  No flickering lights.  These seem obvious to me, but I guess if you've never stared directly into those awful new light blue headlights or into an LED light strip on a dark night, you might not know what I'm talking about.


Slide in presentation, titled Overhead Lights.

Naturally, fluorescent lights are the cheapest for retail businesses by a hefty margin, so this normally falls somewhat on deaf ears.  When researching the subject, I did run across instances of teachers putting films or sheets over their fluorescent lights, which possibly moderated the flickering and humming.  So that's something.  

These particular overhead lights were of an unusual design.  They had a single, bright (probably fluorescent) tube bulb, facing UP.  The rest of the light was a curved white surface, which reflected the light out and down.  I'm not a person that can actually see the fluorescent lights flicker, so I can't be sure that this design was meant to reduce that effect... but it does seem unusual and intentional, so that's certainly something.  

The lights themselves were... much too bright, honestly.  The reflections would bounce off every plastic-wrapped item, every glass item, and every polished surface (like, y'know, the floor).  See the lower picture there?  The reflection of the overhead lights is visible in every single package of meat.  The end result was rather painful once I focused on it.  Dimmers would be a good option here, if the store wanted to be more sensory-friendly. 


LED light strips.  I hate them so much.  Whoever invented them has earned the swift kick in the pants I have saved for them.  They are very often the horrible piercing blue-white variety.  

Meijer, as it turns out, makes copious use of these light strips.  I found them in every refrigerated section, all over the health and beauty aisles, and even in special displays in the food and electronics areas.  Now, to the store designer's credit, many of these light strips were not visible from an adult's height and perspective.  They'd installed them facing away from the customers, or blocked the immediate view of them with a plastic strip.  

The issue, of course, is that these precautions don't shield children, who are lower to the ground and have a different perspective on the displays... and it also wasn't sufficient to keep me from spotting them, because several of them still managed to stab me in the eyeballs.  The next time you see a kid screaming on the ground, apparently having a tantrum, look around for light strips, flickering lights, or obnoxious sounds.  It might not be a tantrum, but a meltdown caused by so many awful and painful sensory inputs.  

There was one exception to the "light strips are awful" rule, and I couldn't manage to get a good picture of it.  The refrigerated juice aisle had these long warm-colored light strips that had been shielded entirely.  This allowed them to emit light, but reduced the eyestrain to the point where I noticed no pain while staring directly at them.  It was really nice, and I hope it becomes the standard everywhere.

Another thing I found and hated with light strips: the ice cream and frozen food sections have those tall upright freezers.  Those are fine.  However, they decided to install motion-activated lighting in those upright freezers, so when you walk by, everything brightens up.  This is highly disorienting to me, and I hated every minute of it.  I actually had no idea why I felt so disoriented in the freezer section until I did this walkthrough and noted the motion sensors every 3 freezers on each side.  Hate it, do not want.

The view looking up in a grocery store.  Painfully bright spotlights shine down on bottles of alcohol

Something that didn't make it into the presentation was spotlights.  I think I'd meant to have them, but just... didn't.   In my defense, it was well past midnight when I was working on the presentation, and I'd had roughly 24 hours' notice that  this meeting was happening, and that I was coming.



I squinted at this flickering spotlight for about a full minute, trying to decide if it was malfunctioning or if this was intentional.  The flickering was quite regular, and wasn't making extra sound, so I got the sense that it was intentional.  Obnoxious and possibly dangerous to people with epilepsy, but intentional.  The whole spice display flickered with light, as a result, which I think was to make it stand out more.  It was kind of like poking me in the eye repeatedly.  Needless to say, I am not a fan.  

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We're going to skip over Sounds this week to jump right into Smells.  You can see from how lengthy the bullet points are here that I'm very out of touch with how one makes a presentation.  I really just wanted to have my thoughts organized.  

As a general sensory-friendly rule, you want zero odors in a public area.  The nose can't cause you pain if it has nothing to react to.  Odorless cleaning products are my friends.  Even pleasant smells, like fruit, flowers, or baked goods, can cause pain and sensory overwhelm.  My doctor actually gets bad headaches from flower-scented things, even though basically everyone likes flowers.

Obviously, in a grocery store, this is only so possible.  The perfume aisle, the scented candle aisle, the cleaning products aisle, the can/bottle return, and the bakery section are going to have smells.  You can use odor neutralizers and air purifiers around and in those aisles to help, but the fact remains, those places are full of smelly things.  And worse, those things are often purposely made with porous packaging (the material has tiny holes in it) so you can smell the product and decide if you want it or not.  

In the walkthrough I did, the trouble spots were actually pretty good, with one exception: the bakery.  I've read somewhere that stores like to pump canned "fresh bread" or "baked goods" smells into their bread and bakery departments, and I'd bet my comfy blue slippers that Meijer is no exception.  I got a strong noseful of "baked goods" smell when I stepped into the packaged snack cakes and cookies section.  Which is curious, since, y'know, they're in packages, and I was still like 10 feet away.  

Historically, though, the can and bottle return is malodorous in the extreme, to the point that even people with normal senses avoid the place.  This location had the entrance to it located right in the entrance to the food, unfortunately, which I can guarantee will make it Bad Times in summer.  

I'm not really sure how the store handles that, but the entry to the return area is unimpeded by sliding doors.  Adding sliding doors, or establishing a breeze going into that room, which is then pumped out of the store, would probably be a way to handle it.  I'm no engineer, though.  

When I shop, I tend to avoid all the trouble spots I've mentioned here, simply because I know they'll be unpleasant.  The discussion brought up the idea of mapping those trouble spots, as well as any quieter or safer areas in the store, and having those maps be available to parents and anyone else with an interest.  I think that's a good idea overall, and I'll go into that idea and some related ones next time, when I talk about Sounds and Store Policies.  

Wednesday, June 5, 2019

Legwork and Life, week of 6/5/19

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.

In brief: last week had a sudden frantic spurt of work activity which exhausted me for a couple days thereafter. You'll see the results of that frantic work this Friday.  But I also maybe discovered something to help boost my relaxation, possibly by overdosing on it.  I have also possibly hopefully gotten a buffer restarted, which is excellent because it's very helpful to my overall anxiety level.  

The work intensive thing spanned roughly 28 hours, and began with an email that I read upon waking up.  Essentially, it was a call for comment from various qualified-to-comment people, asking how to make my local Walmart-competition store more sensory-friendly.  The public face (and only paid employee) of Autism Support of Kent County was being invited to speak to someone at the corporate office.  She wanted ideas from everyone so as to present as many good ones as possible.  The meeting was scheduled for the next morning.

This is the sort of meeting I think firsthand experience is essential for, so I politely requested to be invited along.  Fortunately, she tends to agree on the value of firsthand experience and wasn't put off by my forwardness.  But even before hearing back from her, I made plans to go off to my local store and essentially audit it.  Which I did, though it took over an hour to traipse the whole store and investigate various things.  

I also sent out a message to the local autistic adults I'm in contact with, asking their opinions on the subject.  The thing with autism is that at present, it's a very individualized experience.  I have over-sensitivities in the sensory department.  Some autistic people have undersensitivities, a combination of both, or their senses are normal.  

I came back from the trip with six pages of notes and the desire to have a presentation ready on what I'd found.  Which I managed, but it took basically the rest of the day and well into the wee hours, and the result was, um...  let's say "functional."  A good presentation is pleasant on the eyes and includes more than simply organizing the information.  This was more "it's organized into headers, here you go."  I made the meeting and did some of my presentation, anyway.  

After all that rush and time spent all at once, I was exhausted.  I spent most of the next day doing no work at all, because I was brain-burned and just wanted to lie around.  My life is not so luxurious that doing so was an option, but I did take a bit of time for myself in the evening.  I took a bath.  

I have various good quality bath bombs from a nice Etsy shop, as well as presents from other people.  I often use these, and they smell nice and make me happy.  However, I'd also heard of good results from using Epsom salts in baths, and so I'd sometimes stir in a cup of those in addition to my bath bomb.  Epsom salts, you see, are magnesium salts.  Magnesium is sometimes deficient in autistic people, which can lead to anxiety and other detrimental effects.  So some autism parents swear by Epsom salt baths, saying they're massively helpful for calming down their children.  This time, I eschewed the usual bath bomb and began dumping Epsom salts into my tub like there was no tomorrow.  

I wasn't thinking super-clearly, but I think the closest approximation for my frame of mind was, "I'm going to prove these stories right or wrong, one way or the other, or so help me God."  I'm not actually sure how many cups of Epsom salts went into the tub, because I wasn't measuring.  It's a big tub, so more than the single cup is probably necessary to get the appropriate effect.  At any rate, I dumped probably 3 times that, maybe more, into the tub, including some directly onto my submerged legs.  

It's a little weird to have salt in your bath, but it does eventually mix with the water.  As long as you're not drinking it, it's basically fine.  Just be sure to buy the unscented if you have sensory issues.  I had a very relaxed bath, which I mostly noticed because I didn't start getting super antsy to get out when the bath started to cool.  

After I got out was when I really started to notice the difference.  My muscles were hyper-relaxed.  My brain was very very quiet.  I mostly just wanted to lie around in bed and do nothing.  Fortunately, it was my spouse's turn to cook, so I did just that while I waited for dinner to be ready.  I think I dozed off a couple times.  This alarmed me a little, so I looked up magnesium overdoses the next time I was properly awake, and I miiiiight have overdone it just a little.  Lethargy is a symptom of magnesium overdose.  I didn't have any of the other symptoms, though.  

So I dunno if this is a universal thing, but I'm probably going to buy Epsom salts in bulk now, and make regular use of them.  I will definitely need to see about a better dosage than, "1 cup, plus a bit more, and a bit more, and screw it a lot more, and maybe a bit more..."  

In the meantime, I have a bit of buffer again!  There's not a whole lot to say on this, it's just me stockpiling Reading the Researches and Friday posts for rainy days.  Some weeks there really aren't good research articles for this blog, while others come with several.  It's wise to have backups, but I haven't done that a lot of this year, I guess because there's been a lot of rainy days and not a lot of success in rebuilding the buffer until now.  Here's hoping I can keep up the good trend.  

Monday, June 3, 2019

Reading the Research: Joint Attention

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 highlights a basic neurological difference in autistic people.  Apparently, we simply don't initiate social actions as much.  The article calls this "reduced social motivation" which basically means we're not as likely to put in effort to interact with others.  Some people think this is because we don't find it as rewarding as typically-developing people do.  

The lack of this motivation would account in part for our lesser social skills.  When a child grows up, they run into hundreds of thousands of social situations.  Social motivation pushes them to develop their own, and to interact with the ones they find themselves in.  With reduced motivation comes reduced opportunities to learn the typically expected behaviors, and observe others' behaviors. 

Let's say an autistic child grows up only responding to half the presented social situations, and, not being interested in creating their own, has no further ones.  They will then be, at best, half as adept at social situations as a typically developing child.  The learning opportunities were missed, so the learning didn't occur.  This quickly becomes a disability in a world that expects everyone to react and behave similarly.  And this doesn't even factor in other common issues, like sensory sensitivities, gut dysfunctions, and anxiety.  

Tellingly to me, though, was that the children that were later given autism diagnoses did still respond properly to initiated joint attention.  Our brains are different, but not so different we can't learn or have anything in common with typically developing children.  I've heard of early intervention programs that focused on teaching autistic children to pay attention to others, thus kind of overriding this neurological quirk.  Establish that valuable information can be had from other people, and the child will then learn to keep an eye on other people for that information.  I've not heard what the programs' success rates were like, though.

I think it's safe to say this is one of those observations that was right on target for me as a child.  Prior to reading this article, I would have assumed that was a facet of my introversion, not my autism.  I guess it could be both.  Or the autism lead to the introversion, for me?  Not all autistic people are introverts, though, so the two things might be unrelated.  

In any case, I was definitely a socially-reaction child, not a proactive one.  I was interested in what I was interested in, but I don't think it generally occurred to me to try to share that interest.  I'm sure that was in part because my peers, in general, were at best neutral to me.  You wouldn't walk into a room of hostile people and expect them to care about your latest favorite song.  You'd avoid the room, or tiptoe in quietly if you had to go in, so as not to upset them further.  Though I guess some people would also try joking with the people to try to lighten the mood, but I am not one of those people.  I just wanted to be left alone.

In the course of trying to be left alone, I had a lot of opportunity to observe people... so I did.  Which taught me a lot about people and social systems, though unfortunately from the outsider's perspective.  Still, it's that knowledge that has let me be so successful as a bridge between autistic people and neurotypical people. 

At this time, I would say that I regularly initiate joint attention, though not as much as my spouse does.  He'll sit and browse on his phone and try to show me pictures or stories or whatever every minute or so if we have downtime.  I'll only do that if I find something particularly funny or highly related to his interests.  Still, I think now I probably fall a lot closer to "normal" in terms of this facet of social communication.

(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.)