Monday, December 31, 2018

Reading the Research: Working with Different People

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 major problem I see overall, not just in schools: we aren't taught how to work with people who are different from us.  Whether those differences are skill-based, which is what this article is outlining, or neurology or biology based, like autism or type 1 diabetes, shouldn't matter.  I would even hazard to say that this same lack of skill in working with people different from us might also extend to political differences.  

Something I've learned in my particular track of life is that you don't have to be similar to someone to work with them.  It helps, sure, but it's not essential.  Skills that might be relevant to this subject are:

  • knowing when a disagreement is irrelevant to the task at hand, and being able to put it aside.
  • being able to work your hardest to implement a plan of action, even if it's one you personally think isn't ideal.
  • the skill of recognizing the expertise of other group members, and asking and heeding their advice on those subjects.
  • conveying to each and every group member that they are valuable and their work matters.  
You'll notice these are also hallmarks of good leadership in general. 

As an autistic person who was once a student, I deeply dreaded the words "find a partner..." when it came to schoolwork, because it almost invariably meant I was going to be stumbling through social rituals and being excluded before being assigned a fellow outcast or shoved into a group that didn't want me.  

For projects trying to teach this kind of collaboration, I suspect the words "find a group" wouldn't be involved.  After all, if you simply let people group together, they'll find their friends, who are similar to them.  Instead, you'd need to assign groups to ensure sufficient diversity.  At least, if you want to do this teaching properly.  

It saddens me a bit that the activities called out for teaching these skills are also the ones that are optional: band or orchestra, school newspapers or yearbooks, and volunteer activities.  

I feel it would be very beneficial to all of US society if everyone, old and young, was taught these collaborative problem solving skills.  And especially to autistic people, because not only do we need these skills, we would benefit from everyone around us having them.  It seems to me like a step towards people handling human diversity more gracefully, which we badly need in these fearful and divided times. 

(If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that didn't make the cut for a Reading the Research articles!)

Friday, December 28, 2018

WYR: Neurodiversity and Relationships

http://jerobison.blogspot.com/2018/11/neurodiversity-and-relationships.html

So, I can personally back this up.  Turns out at least 2 of my high school friends are on the autism spectrum or otherwise neurodiverse, and another few from college.  This was definitely not intentional. 

I didn't know I was autistic at the time, and neither did anyone else.  It just so happens that the people who were willing to put up with me tended to be odd themselves, which we later found out was because we were neurodiverse in some way or another. 

My spouse has expressed worries to me sometimes, that something's not quite right with him.  These are similar worries to ones I had prior to learning I'm autistic.  My formal training in psychology doesn't extend to a really good diagnostic knowledge, but in all honesty, the diagnostic manual isn't super helpful in many cases.  I didn't recognize the autism in myself even after studying autism. 

A term I was introduced to, when it comes to being inclusive and recognizing the sheer immensity of human diversity, is "not yet diagnosed."  This term recognizes that all people, even ones generally accepted as "neurotypical," differ, sometimes rather impressively.  So even people who don't have or qualify for a formal diagnosis can be very different in both good and bad ways. 

As I've learned more about the psychology diagnostic manual, I've also learned that psychology is a very young science.  Our understanding of people and how we think and act is very rudimentary, by comparison to physics and biology.  As such, "not yet diagnosed" is also a way to acknowledge that we have a lot to learn about people. 

Finally, if you're familiar with the term "alphabet soup" in relation to diagnoses in people, you'll know that people rarely get away with just a single diagnosis.  I have five, personally, which include autism, anxiety, depression, and a couple other brain weirdnesses.  Psychology simply isn't good at putting people in boxes yet, because people tend to defy boxes. 

Whether that's because the diagnostic criteria simply aren't good enough, or because people are simply that complicated, is as of yet unknown.  But you can still safely shake your head when presented with a list of diagnoses, because even with that information, you really won't know how to help the person until you meet them.  Yet we still insist on putting people in these boxes, in hopes that it helps.  Overdiagnosis is thus an issue.  One of my formal diagnoses is "ADHD," which I'm pretty sure is inaccurate. 

"Not yet diagnosed" thusly also includes the element of over diagnosis, with the understanding that probably someday psychology will have a name, however accurate or inaccurate, for what's different about you. 

I like it as a term, honestly.  

Wednesday, December 26, 2018

Legwork and Life, week of 12/26/18

Merry Christmas (or appropriate seasonal greetings for your religious/ethnic/personal beliefs)!  And Happy New Year in a few days.

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

Hello from the day after Christmas, where I am quite tired and probably actually still sleeping at the moment this will go live.  Normally I'd have been sleeping in the last few days, but between church services, my spouse being on vacation, and taking care of a pet bird for some friends, I've been off my usual schedule quite thoroughly.  


That fact has sadly not helped my life-juggling.  It's appropriate that this week's research review was on depression and online tools to help with it, because my tendency to get depressed near Christmas hit me pretty hard on Christmas Eve, and had been dragging on me all of last week.  

I'd kind of hoped I was done with being depressed on/near Christmas.  It had actually been a few years since I was really depressed at this time of year.  I guess with all the hustle and bustle and anxiety about presents and such, I relapsed a bit.  Between ages... I dunno, 10? and like 24 or so, I was always depressed around Christmas.  Whether that was because my depression was untreated, or because of all the changes in routine around the holidays, or just because I deeply resent people expecting me to be cheerful around Christmas when I'm not usually capable of it, and it's even less socially acceptable to not be happy at Christmas... the reason is anyone's guess.  

Anyway, my misery on Christmas Eve aside, Christmas Day was pretty nice.  I still didn't get to sleep in, but the first meal of the day was fancy brunch with my family.  There were all sorts of fun options, like mini Belgian waffles, fresh homemade whipped cream, an omelet bar, various fancy cheeses, roast duck/pork/beef, fresh fruits, and of course various fancy desserts.  I do like food, so good food is often the more predictable and reliable way to cheer me up.  

Presents this year came in two batches: from Chris' side of the family and from my side of the family.  I feel a mite childish about it, but it did me good to see the pile of boxes and gift bags sent by Chris' family.  We opened those on Christmas Eve after I was done being a miserable lump, after which we took various silly pictures in hopes of amusing my mother-in-law, who likes to have photographic evidence of family occasions.

The ones from my side of the family were much less impromptu, with an actual family gathering at my parents' place after the brunch.  My dad put on his traditional Santa hat and distributed presents one at a time, as is the family tradition.  That took a good while, because there were a surprisingly large number of presents.  I like my family, so it was time well spent.

I'm not going to list out everything Chris and I got, but I will say the Most Unusual Present award goes to one of my aunts, who combined her love of knitting with my love of chainmail and made a pair of very singular (and warm!) cuffs.  These are remarkable (besides being what they are) in that despite that they're literally laced with metal, they are not pokey nor do they strip the warmth from your hands like chainmail does in winter.
Blue, of course.  My aunt knows me.  I really want a full long-sleeved shirt and leggings of something like this, but the amount of work that would entail would be absolutely insane.  
Other notable (oddity-type) mentions include a Pokemon-themed cookbook, a combination lightbulb base/USB charger, and a long-legged tablet stand for use while in bed.  These were in addition to things I'd asked for on my wishlist and other less weird but still useful gifts.

I tend to be exceedingly ultra-practical for most of the stuff on my wishlist, asking for things like quality socks, electric toothbrush heads, household utilities, music CDs, and small consumable items.  These are things I really need or would use quite a bit, which is why they're on there.  So while I'm always happy to receive things from that list, it's interesting to see what things people think should be in my life.  I have at least one relative that flatly refuses to buy things off wishlists.

Anyway.  All in all, the holiday season balanced out fairly well.  It's not quite over; we'll go to see my dad's brother (my uncle) on the other side of the state in a few days.  So I guess that'll be Christmas part 3.  Still, not a bad way to end a year, I think.

Hope your holiday season was good as well.  

Monday, December 24, 2018

Reading the Research: Online Depression Education

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 an important missing piece in compulsory education: mental health education.  The rate of mental illness and emergency room visits due to it is rising in our children and adolescents, but in all the schools I attended, nobody taught me how to recognize depression, let alone how to help with it.  This is one of many gripes that came up in the viral video "Don't Stay in School" which I strong suggest you watch.  

Mental health issues are particularly important when dealing with autistic people, because our rates of mental illness are much higher than average.  This is especially true for autistic people that are expected to camouflage as neurotypical, rather than accepting and appreciating our differences.  But it's true for any of us, including me.  I have dysthymia (low-grade, long lasting depression) and generalized anxiety disorder (everything makes me anxious).  I've experienced at least one major depressive episode, probably more that went unnoticed.  And I have had mild self-harm tendencies in the past.  As things go, I got off lightly.  Particularly since I have access to effective therapies and nutritional help.  

What if my symptoms had been caught much younger?  Might my depressive tendencies never have escalated to full-blown depression?  Or at least, might I have learned to handle and manage my depression effectively decades ago?  That's the hope of this CATCH-IT intervention, and others like it.

CATCH-IT (Competent Adulthood Transition with Cognitive, Humanistic, and Interpersonal Training- yes, this is an excruciatingly devised acronym) is a set of online learning modules, including coaching and motivational interviews.  The fact that it's accessible online is promising.  I'd be happiest if it was available for free online, but at least it's a start.

At present, young people mainly access the Internet via their phones, so having a set of modules accessible that way, at any time, would be instrumental to catching depression early, and teaching the tools to manage it early makes it more probable those tools will be learned and used over a lifetime.  Which means fewer emergency room visits and hopefully fewer suicide attempts.  A worthwhile goal, in my opinion!

In the meantime, it seems like apps like Wysa and Woebot might be a good place to start.

(By the way, if you like seeing the latest autism-relevant research, you can find more studies that didn't make the cut for a Reading the Research article over on my Twitter account!)

Friday, December 21, 2018

Worth Your Read: Self-Determination

http://libertyhousefoundation.net/wp-content/uploads/2014/03/goes-under-informative-articles-You-and-I.pdf

Can you get up in the middle of the night and microwave a burrito for a midnight snack?  If so, you probably aren't living in an institution.

This "burrito test" is not a measure of midnight snacking.  It's a measure of self-determination.  Can you:

  • A) get up in the middle of the night and leave your room? 
  • B) easily and freely access a refrigerator and microwave?  
  • C) choose a snack that you want that isn't particularly healthy, and 
  • D) consume it outside a regular "healthy" eating schedule?
Most people, statistically, pass this test.  But those numbers drop when you start looking at the autistic population, and at other neurodiverse populations.  

In formal settings, "self-determination" is a buzzword.  It's giving the person a choice at pre-determined intervals, in structured decisions, and in activities tailored to the person's interests.  This isn't itself all bad (and it's a major improvement from what institutions used to be like), but it's not true self-determination.  

Self-determination is the ability to push boundaries and take risks.  It's having as much privacy as possible.  It's having the ability to leave situations if needed.  It's going to the nearest fast food restaurant because you felt like it.  It's trying whatever activities in the community you want to, and quitting them if you don't like them.  

Self-determination is scary, and messy, and complicated.  It scares parents of neurodiverse people, especially ones with high support needs.  

The job of a parent, for a big part of a child's life, is to protect them from things they don't understand but could definitely hurt them.  When the child becomes an adult, but still has support needs that make them seem less "adult," parents often still think and treat their young adult as a child.  In fact, the terminology used in some parent advocate organizations is "adult child."  Emphasis on the "child" part.  

This protective mentality makes it really hard to stand back and let the young adult make their own mistakes.  

All parents have to learn this "standing back" mentality eventually.  Parents of neurotypical (NT) children usually handle it easier than parents of neurodiverse children, because the NT children tend to better meet their parents' definitions of "adulthood" than neurodiverse children.   Their capabilities are within "normal" parameters.  

Maybe 18-year-old John (NT) goes off to college with slightly lacking hygiene, little fashion sense, and sometimes forgets to have breakfast.  But his parents won't worry as much about him as 18-year-old Jake (autistic), who still has trouble dressing himself, tends to go on long monologues about the latest comic books, and needs a lot of help to manage his classes, work, chores, and leisure time.  

Both John and Jake could thrive in college, but Jake is much less likely to actually have the opportunity.  His higher support needs are part of that, but they're not the whole story.  Jake might never even be offered the possibility, because his support needs seem impossible to manage in a setting like college.  

This is true of all levels of support needs, in my experience.  I've known fully verbal, well-balanced autistic people in their 20s, whose parents insisted on controlling most aspects of their lives.  It gets less obviously repressive as support needs go up, but the pattern holds.  Parents of neurodiverse people tend to be overprotective, to the point of being oppressive.  And the period of overprotectiveness often lasts much longer for neurodiverse people.  

I go to the parent support group in my area for many reasons.  One of them, though, is to let parents see what their kids might be, given the right supports and services.  It's very easy to look at your child having a meltdown, or being nonverbal, or failing to manage their time, day after day, and think things will never be different.  That you'll always need to be on hand, managing their life exactly the same way at 26 as you did at 16.  

It's hard to let your child make obvious mistakes, and not rush in and stop those mistakes before they happen.  

But you have to.  That's the thing.  Some lessons in life have to be learned personally.  If you aren't allowing us to make mistakes, mess things up, and suffer from the results, you aren't allowing us to grow up.  

I can't give you a good road map for allowing self-determination for yourself, or your child.  That map is different for every person.  But I can say that as your child grows up, the role of a parent shifts.  You start being less "the protector" and more "home base."  

As much as possible, stand back and let your young adult experience the world in the manner they want, try things, succeed or fail, but always have a home base to return to.  You know more about being an adult than they do, so be available to offer that wisdom to them.  Don't shove it down their throats, simply be available.  Accept that growing up includes taking risks, and some of those risks will end in mistakes and failures.  That's part of life, and that's okay!  

Wednesday, December 19, 2018

Legwork and Life, week of 12/19/18

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

Hello from my house, where Christmas is stalking me.  I've been trying to keep a bit more organized this year compared to years prior, but I dunno if I'm really succeeding.  This year, to be fair, was a bit more complicated due to actually decorating slightly for the holiday.  





Those strings of lights actually gave me a very minor electrical burn, because I managed to break one of the bulbs while I was trying to get the lights up.  So that was fun.  But the end result is kind of pretty, so I'll take it.  (Also, if anyone is confused: the lights are blue because my favorite color is blue, and therefore many things that I own are blue.)

I'm concentrating remarkably poorly this week.  Having the vent in the fireplace open seems to help, but it hasn't stopped the first part of this week from being the least industrious I've ever been at working on this blog or really getting anything done at all.  It really makes me feel bad.  I have ideas graphed out on an organizational website for things to write about, but when I sit down to write, I just... can't seem to focus long enough to put thoughts together.  

This particular section, Legwork and Life, was even a struggle to manage, and it's the easiest of them all, just summarizing what happened last week and anything notable that might be useful to parents or other people.  I have no idea what's wrong with me, but clearly something is.  And it's not likely to be mold this time, we checked for that. 

All of this is to say, I guess, that even though I'm highly verbal and generally handle my life well, I still have bad days and bad whole weeks, and couldn't tell you why.  So if you're a parent, and your kid is just... acting poorly or whatever for no apparent reason... maybe it's whatever's screwing me up.  Or something like it. 

I feel bad, more under-rested than usual (I'm yawning much more often than I should be), and fuzzy-headed.  And it's probably not mold.  That's about all I, a highly verbal and highly reflective autistic adult, can tell you.  No wonder parents have such a hard time finding out how to improve their kids' lives.  

Monday, December 17, 2018

Reading the Research: Neat Little Fallacious Boxes

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 talks describes a bit why having labels for personality disorders isn't necessarily helpful, and advocates for "dynamic analysis," ie: analyzing the specific person and tailoring care to them, rather than the label.  This same philosophy is relevant to the whole of psychology and autism supports and care, as I'll describe in a bit.

People like neat and tidy categories for things. 

This is as true for mental illness and developmental disorders as it is for things like race, sex, and gender.  The 44th President of the United States, Barack Obama, is a US citizen of 1/2 African and 1/2 non-Latino white parentage.  When it came to describing the man, however, everyone pretty much just called him "black" or "African American."  Such a description loses the beautiful complexity of his life, but it was what people chose. 

Sex and gender are similar.  US society in the past has been conditioned to think of both these subjects in terms of binary, but that's accurate for neither one.  Here's a link to a really gorgeous infographic about how genetics don't conform to the "male or female" designations for physical sex.  Also, I did a piece a while back on gender, with a focus on transgenderism.  When you look at any given person, or speak to someone on the phone, you automatically make an assumption about their sex and/or gender and which pronouns you should be using. 

Mental illnesses, developmental disorders, and personality disorders all fall into this same kind of trap when it comes to professionals.  The DSM (Diagnostic and Statistical Manual) used by psychologists and other mental health professionals lists various disabilities, conditions, and disorders, and directly after them, their hallmark traits.  Professionals, by virtue of their jobs and frequent use, tend to memorize these criteria.  As such, the criteria are recalled each time they come into contact with that diagnosis.  

The thing is, people are people: complex, messy, and not at all cookie cutter.  Personality disorders don't change that, as this study says.  Treating one person with antisocial personality disorder exactly the same as the next person with antisocial personality disorder won't necessarily have good results, because people differ and therapy and supports need to be personalized.

The same thing is deeply true for autistic people.  I've complained repeatedly about how autism comprises a truly staggering number of different kinds of people.  Dr. Stephen Shore's famed quote, "When you've met one person with autism, you've met one person with autism," is often repeated, and for good reason.  What works for one person may not work for another, and the symptoms one autistic person has may not match another person's symptoms at all.  

Because of this, individualized care is mandatory.  Simply looking at a person's alphabet soup (list of diagnoses) doesn't tell you what exactly they're struggling with, and what supports and services and treatments might help.  You have to get to know the person and their challenges before you can make recommendations.  

As someone who routinely gets put in boxes they don't belong in, I find the human tendency to put things and people into neat little boxes extremely tiresome.  It may serve a purpose, but when it comes to live people, it has be balanced with thoughtfulness, empathy, and observation.  

Friday, December 14, 2018

Music with my Autism

I ran across an article discussing the benefits of music for autistic people.  I'm always pleased to see science studying music, because I think it's a very important and powerful medium.  It's also an integral part of my life, to the point that if music didn't exist, I wouldn't be me.  Also, I probably wouldn't have made it through college with my sanity mostly intact.  

The study talks about improved communication, improved brain connectivity, and family quality life, but not reduced autism severity.  Depending on who you ask, those things are connected, and thus the severity of the autism was "improved."  As the summary here doesn't formally define autism, it's an open question... but when reading these articles, you always need to keep in mind what the researchers are defining as autism.  It may not be the same way you personally define autism.  My personal definition is different than that of any given researcher, and that of any given parent.  


Growing Up

Music has always featured prominently through my life.  When I was very little, my mother would sing to me, not only at bedtime, but also to distract me sufficiently so she could put on my shoes without a fuss.  Beethoven, Bach, and Brahms (and other classical masters) often played over the stereo in the living room in whatever house we lived in.  Mom didn't do this as part of some plan to increase my IQ or whatever.  She has a Masters degree in music, and a great fondness for classical music, and housework was drudgery.  So she played various recordings on cassette tape to make the housework more tolerable.  

I sang in choirs, of course, and attempted to learn to play various instruments, mostly unsuccessfully (practice time + anxiety disorder + extremely musically literate parents = no actual practice time).  As a family we attended church, which meant singing church hymns every Sunday.  I memorized many of those over the years, even though we moved between areas (and churches and even denominations).  Having them memorized was comforting, because hearing the familiar sequences of hymns at new places helped counter the unfamiliarity.  

One of my first "big" presents, as a child, was a stereo.  I played many cassette tapes on it, with various kinds of music.  I think it was in middle school, or early high school that I received my first portable CD player.  It was meant to be used while walking or running, I think.  I was never a terribly active child, but I did like having a favorite CD on hand to listen to, with whatever headphones I had onhand.  I went through many pairs of headphones, especially once I got an iPod (late high school/early college).

My personal music collection began with just a few CDs in middle school, mostly of classical music or soundscapes.  The latter were ostensibly to help me sleep, but in all honesty, I listened to them at any time of day.  Their soothing nature was helpful in handling the purgatory known as school.  I was introduced to more popular music in high school, of course, and even given a couple CD mixtapes of various favorite songs from people.  Which was pretty cool, and is something I enjoy collecting today.  I have playlists from about a dozen people, which I treasure even though those people have mostly moved on from my life.

Using Music as Assistive Technology

Listening to music allows me to leave or step aside from my current state of mind and sink into the emotions or message of the music.  The interesting thing about music is that there's so many possible ways to interpret a single song, let alone whole albums.  Never mind mixtapes and personalized playlists.  This was particularly important in college, when the stress and difficulty of life ramped up.

I would get into an artist or a particular album, and listen to that music while walking between classes.  When I took exercise classes, I invented playlists to keep myself sane while I pulled my weight around the track, or forced my muscles to dully lift weights over and over.  Untangling headphone cords became a way of life, and it was more common to see me wearing headphones than not.

At some point in my childhood, I learned that professional DJs tend to have about 20,000 songs in their music collections.  Naturally, the type of music they have depends on what kinds of gigs they run... but having a collection that large appealed to me.  At present, my collection is just over 15k songs.  They do not follow a theme overall.  Large swaths of those songs are from video game soundtracks, because many of those were never licensed and I can therefore not be fined for having them.  But the remainder covers every major musical category I'm aware of, from Alternative to World.  Metal, Rap, Industrial, Jpop, Electronica, and even Sacred music lurk in my collection.  I certainly have favorites and types of music I like less, but on the whole, I consider myself fairly appreciative of most musical styles.

As an adult, I've stopped wearing headphones quite so much... but that's because I have more devices with decent speakers and fewer people around me to annoy by using those speakers.  For example, I am currently listening to piano music using my TV, which helps drown out the incessant scream of the vacuum cleaner upstairs.  Instead of an iPod (or a phone), I have a tablet larger than both my hands.  It has a headphone jack, of course, but it also has decent speakers, which I tend to use instead.

Personal Portable MP3 Player

One of the great kindnesses of my life is that even when I'm separated from a device that plays music, my own mind can serve as an MP3 player, to an extent.  It's not as flawlessly accurate as an actual MP3 player, so if I don't have the song perfectly memorized, I can't play it in my head perfectly.  In the case of songs with words, it rarely matters.  I'm word-centric and literalist in mentality, so if the vocal line is intact, the rest follows.

It's an effort to have my mental MP3 player play what I have in mind, but if I don't have something in mind to play, my brain will simply play whatever I'm currently into, or church music, or even something chosen for reasons I don't understand.

I once was having a really hard time in life, struggling to keep my head above metaphorical water between a string of life demands and social occasions I couldn't miss.  And for several hours, when I was really feeling the stress, my mental MP3 player opted to play a particular playlist from the epilogue of a years-old D&D game.  This playlist had been the "the game's done, you survived and succeeded, here's what happens afterwards" playlist.  After thinking about it, I realized my brain was trying to comfort me and tell me to hang in there, because it was almost over. 

I can sometimes get a sense for my moods based on what music is playing in my head.  Usually it's not as obvious as the above example.  As I said, I'm word-centric and a literalist in mentality, meaning that if the song has words, they probably feature first in terms of how I understand the music.  So if the words in a song are about a particular subject, or sad overall, I can kind of assume that's why.  Even with all that known, I mostly can't figure out why a particular song might be playing.   I mostly just shrug at my mental soundtrack, noting what's playing but not understanding why it's playing.  I have a lot left to learn on that front.

A Lifelong Effect

I have no doubts I wouldn't be the same person if music hadn't been so involved in my life.  I wouldn't have been able to self-soothe in college so easily, which likely would have led to dropping out entirely.  That's the easiest example.  

Would it have been a struggle every day to put my shoes on, as a little child?  Might other simple tasks have been affected by the struggle?  Perhaps I would have become a more defiant child.  The family dynamics themselves could have been affected, with me being an even larger problem child than I already was.  Perhaps the conflict would have spilled over into school, and I might not have graduated high school despite having the ability to do so.  Perhaps, without music tying the disparate parts of my brain together, I might not have become as good with words as I am, or learned the coordination necessary to roller skate, or even walk smoothly.  

I wasn't terribly social as a child, but being in choirs every year meant a certain amount of built-in socialization in my week, in addition to school.  That's a good thing, generally, even though it's tiring.  And, high school choir is how I met my spouse-to-be.  For about half a year, we were in the same choir in high school.  That was just long enough for me to recognize he was a decent sort, and for him to prove it by his actions, which paved the way for our later interactions, discussions, dating, and eventually, marriage.  

As an adult, I usually listen to music at least once a day, on the car stereo as I drive places, using my support tablet at home or outside, or using the TV or the computer to access my music library.  I would say I don't use music as much as I used to in school, but that's perhaps because there's less commute time involved.  When I was in school, there was always the bus ride to and from home, study halls, and the time between classes.  In college, there was the 5-15 minute walk between classes, plus study time at home.  I still listen to music in the car, but it's drawn from a smaller pool than the 15k songs on my computer.  (To be fair, it's not like a CD can hold 83 gigs of data...)

I do still self-soothe using music, though.  Hearing familiar music brings to mind the time period of life I listened to that piece most.  So, listening to certain punk rock songs reminds me of high school, which helps me work through or recognize being angry, stressed, and sad.  Listening to certain choral pieces can remind me of when I was learning them, and, like my father, incline me to sing along as the music plays.  Various pop songs remind me more broadly of their eras, and comfort me by being familiar and predictable.  

For obvious reasons, I'm kind of alarmed that music classes, choirs, orchestras, and bands are being phased out of schools in favor of expanding sports.  Without music, I would not be who I am, and likely wouldn't have gotten as far in life as I have.  I'd like it if every person had that opportunity.  No exceptions.  

Wednesday, December 12, 2018

Legwork and Life, week of 12/12/18

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

Hello from my house, which has been thoroughly inspected for visible mold, and no luck.  My mother (who is very sensitive to mold) volunteered some of her time to sniff around the house in hopes of finding the mold or other environmental factor I was complaining about last week.  Nothing smelled off to her, which is good because it probably means there isn't any mold.  But it's bad, too, because it leaves a giant question mark for why I'm feeling off.  

Fortunately, that's what my doctor is for.  Her suggestions for other factors included investing in an air purifier, getting allergy tests done (to see if I'm allergic to pollen, pet dander, dust, etc), and surprisingly, moving the wireless router to another room.  

I'm still getting the specifics on the lattermost idea, but it's probably worth trying any or all of these.  We already have an air purifier, which I've set up to point roughly over my shoulder.  I should therefore be breathing mostly purified air.  I have no idea if the filter inside the air purifier is a HEPA filter, though, so it's uncertain how much good this will do me.  

The allergy tests are something I've been meaning to have done anyway.  We were thinking about adopting a dog or a cat or something, but before we do that, I want to be sure I'm not allergic.  It'd be terrible to adopt a critter and then find out that although we just vowed to take care of it for the rest of its life, I actually can't be around it without compromising my health.  Finding out whether I'm allergic to dust, like my mother is, would also be valuable.  

I'm not 100% sure what to do with the router situation.  I can definitely put it on a timer, so it turns off at night and back on in the morning without needing to worry about it.  But there's only so many places to put the router, and I don't want to move it nearer the bedroom.  But I also still need the wireless signal to be accessible in the house.  It's a frustrating situation.  

Hopefully my spouse and I can figure something out soonish, and get measurable results.  If I could feel better every day, I'd really like to.  

Monday, December 10, 2018

Reading the Research: Focusing on Consequences

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 one of those that really underlines to me how much of an alien I am sometimes.  It's less the immediate study (having to do with junk food versus healthy food), and more the overarching principle behind the study.

The study itself focused on teaching people to choose healthy foods over junk foods when feeding their video game avatar.  The game gave immediate feedback on your food choices, unlike real life, and the avatar would comment on feeling ill if fed junk food, or feeling healthy when fed healthy food.  Very simplistic, but the results translated a day later to the participants' choices for feeding themselves.  

The overarching idea for this is that when presented with the consequences of their choices, people tended to make better choices.  This isn't... or at least shouldn't... be rocket science.  But most people don't spend a lot of time on every last decision, so carefully considering the consequences isn't really a normal behavior.

I'm not going to say I spend time considering every single decision I make, but if this study is anything to go by, I spend a lot more time overall considering the decisions I make, and the consequences of those decisions.  This is true on both large and small scales.  

An example of small-scale would be the calculations I run in my head regarding small talk in places like the grocery store, when interacting with a stranger.  Chances are, I won't need to speak to that person ever again, but I still try to treat them like a real person who is worthy of my interest and attention rather than passing scenery.  This actually requires mental effort, even though it really shouldn't.  I do this purposely, in hopes of benefiting the person I'm speaking to and not making their day worse by blowing them off.

A larger scale decision might be something like how long a holiday trip needs to be, or what car I'm going to buy, or whether to accept a job.  If the trip is too short, my in-laws will feel neglected.  If my car isn't a good one, I'll have to repair it more often or even get a different one.  And a job will take time away from other parts of my life, especially if it involves travel.  

Most people tend to take a bit more time on large decisions like these, so I'm not actually sure how my decision-making process compares.  I will say that the last time I went car shopping, I narrowed my choice down to a single manufacturer, model, and two different years.  This made finding my car rather difficult, but I was fortunately able to find one that fit the bill.  

Perhaps a better example is the rules of driving.  There are the legal laws that you have to learn and follow to the letter to get your driver's license in the first place.  Those need no careful examination or decision-making.  The second tier of laws, which sometimes supersedes the first, is where this really becomes clear.  

When you come to a stop sign, do you follow the legal law and come to a complete stop behind the stop line (or with your mirror even with the stop sign) before you proceed through the intersection?  Most people don't.  I usually don't, either.  The spirit of the law, I think, is to keep people proceeding safely through the intersection without any collisions.  If there's nobody at the intersection (including pedestrians and cyclists), and you've double-checked that, you don't, I think, really need to come to a complete stop at the stop sign before going through.  In fact, if you do that every time, and someone's behind you, they may get very annoyed at you.  

Another second-tier rule of driving is stop lights.  The legal rules are (roughly): green means "go", yellow means "prepare to stop," and red means "stop."  The actual behavior pattern followed by drivers (at least in the US) is green means "go", red means "stop", and yellow means "either speed up to get into/through the intersection before it turns red, or start stopping now because you're sure you won't make it."  

Do other people consciously think about this stuff, or do most people just kind of intuitively pick up on it from watching others and let that second-tier rule supersede the first-tier one?  As best I can tell, it's the latter.  For me, on this and many other things, it was the former.  

Beam me up, Scotty?  

Friday, December 7, 2018

Worth Your Read: Where Do We Work?

https://www.houstonchronicle.com/news/health/article/500-000-teens-with-autism-will-become-adults-in-13338984.php

This is the thorny, dreaded question for both autistic people and parents of autistic people.  While the term "boomerang generation" has been applied to millennials as a whole, it's particularly apt when speaking of people with special needs.  "Boomerang" because we go out and try to manage adult life, but end up back at home with our parents.

There simply aren't enough jobs, and they don't pay enough to live on.  When you add in special needs and disabilities, the opportunities shrink even further.  How, then, are we supposed to take care of ourselves?  What happens to us when our parents are gone?

This question comes up a lot in the parent support meetings I attend every month, and it's one that has no simple answer.  The usual solution is to shoehorn the autistic person into manual labor (which pays abysmally, by the way), and hope we can keep the job.  Some people are happy doing that, and more power to them.  Personally, I was extremely unhappy doing manual labor, which deteriorated my emotional and mental stability until I finally quit.

The promise of higher education is that you pay your dues (tuition, which now usually ends in life-crippling debt), and then you get a job in your field afterwards to support yourself, and perhaps a family.  That was the route I tried to take.  Managing college can be extremely challenging for autistic people, between the loss of parental supports, the increased social challenges, and the increased workload.  Assuming you could manage the rising difficulty of juggling all of that, and your self-care and social skills were up to the task, it's supposed to be worth it.

The problem is that college no longer necessarily leads to a good job.  But it definitely leads to massive expenditures of money, and usually, debt.  So I, like many others, ended up with a college education, but no job to show for it.  I attempted to hold jobs related to my minor in college, but between the depression and the complete lack of understanding of my specific difficulties, I wasn't able to keep the jobs for very long.

Discouraged, I began looking for under-employment positions rather than lose my apartment.  Few of those were tolerable, and eventually, I stopped looking.  At present, I do consulting work, usually as an autistic advocate.  But the pay is not at all dependable, unfortunately, and my spouse's income pays for most of our expenses.

My story is fairly common, though much less heartbreaking than most.  So what's to be done?

Fortunately, autism is becoming better understood, and organizations are beginning to prioritize hiring people with disabilities.  Various local organizations offer "find employment" services, and those are often a good place to start.  Additionally, though, there are larger, nationwide or worldwide organizations that can help.  Here's a few:

https://specialisterneusa.com/
https://autismallianceofmichigan.org/employment/
http://www.easterseals.com/our-programs/employment-training/
http://www.autismsource.org/

The ideal success story is that the autistic person finds a good job that they love and which pays for their expenses (rent, food, some leisure, and support services).  This is what I tried for, and failed to manage.

In reality, success usually looks more like this: an autistic person finds a part time job they like or at least can manage.  They (or their parents) manage their hours carefully so they can continue to receive Supplemental Security Income, stay on Medicaid, and continue to receive support services through Medicaid.  They continue to live at home, or perhaps find a place in low-income housing. This is the success story I hear most from the parents at the parent autism support group.

This is not ideal, but it's better than what often happens: the autistic person languishes at home, becoming lethargic, depressed, and dispirited.  They rely on their parents to provide supports, do nothing worthwhile with their lives, and suffer because of it.  We can do better.  

Wednesday, December 5, 2018

Legwork and Life, week of 11/5/18

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

Hello from my house, where the cold weather has finally set in properly and the pond out back is starting to freeze in pretty patterns.  


I'm pretty sure if I tried walking on this, my foot would immediately sink through.  Still looks nice!
It's taking longer to recover from the trip to CT than I was hoping.  I'm not sure if that's a function of there being mold in the house somewhere, or the fact that I immediately tried to hop back into almost every weekly event, or what.  It's clearly not blameable on the algae outside, though.  I'm kind of loathe to go on a witch-hunt through my house for mold, but if there's been a lesson in the last year or so, it's, "Are you feeling bad suddenly?  It's probably mold or some kind of environmental factor!"

Maybe my biggest issue with doing these mold hunts is that it's never really a simple question of "well, best check the refrigerator."  It might be the refrigerator, of course.  It might be the shower (which did have mold in it when we bought it).  It might be the sump pump, which has standing water in it at all times (but I was told didn't have mold when they inspected it).  Or it might be something on the kitchen counter, because sometimes that just happens.  Other possible places include faulty window sealants, the air conditioning, and the carpet. 

It's overwhelming and frustrating to even consider, because I don't necessarily know what I'm looking for, or even if I'll recognize it when I find it.  There are something like 100,000 different types of mold, some of them much more subtle than others.  When I'm already feeling bad or foggy-headed, I'm really not interested in taking on a project of that potential magnitude.  

In theory, I suppose this is where I should be calling in my spouse.  In practicality, doing that feels like I'm bothering him and wasting his limited free time on what might well be a fruitless search.  So mainly, I just tough it out until I can't any more or the source is found accidentally.  (Why yes, this is very stupid and not at all advised, thanks for noticing!)

Monday, December 3, 2018

Reading the Research: Ketamine

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 both introduces a potential new treatment for depression and it managed to prick a personal pet peeve of mine.  Normally these kinds of articles just go into my Twitter feed, where I link to them and then snark for sentence or two before rolling my eyes and continuing on with my life.   However, today the article came with sufficiently good information regarding depression (which is comorbid with autism, and often plagues caregivers and parents of autistic people as well), that it didn't feel right to simply grump at it and then ignore it.  

All that said, meet ketamine.  Discovered in 1962, it's mainly used in anesthesia due to its tendency to provide pain relief while sedating the user into a trance-like state.  In more recent years, it's been found to be an effective and quick-acting treatment for major depression, bipolar disorder, and, as this article terms it, "treatment-resistant depression."  

If the quotation marks and phrasing didn't make it really obvious, this is my pet peeve.  The US healthcare system is so enamored of its SSRIs (selective seratonin reuptake inhibitors) and its other drugs that it terms any depression that doesn't respond to them "treatment-resistant."  As if there are literally no other treatments except for SSRIs.

You know what else treats depression?  Regular exercise, nutritious food (free of any allergens), supplements to make sure you're getting all the nutrition you need, and neurofeedback therapy.  Otherwise known as all the things I manage my own depression with.  But oh nooooo, those don't exist, if SSRIs don't help the person manage their depression it must be treatment-resistant!  Ugh.  Uuuuuuggggghhhhhh.

The quick-acting anti-depressant effects of ketamine were discovered in the year 2000.  It is now 2018 and we are only just now deciding to focus on this new lead, and pare down what kind of dosages work best?  If we'd looked into this 15 years ago, how many lives could we have saved from suicide?  How many people could we have aided in fighting off the haze and pain of depression, so they could start to improve their lives?

But no, try all these SSRIs, one at a time over months and years of your life, and hope you find one that works.  Sorry about the nasty side-effects they usually come with.  And if you can't find one that works, your depression is "treatment-resistant" and everyone just shrugs and tells you that it sucks to be you.

Like I said, pet peeve.  Hopefully understandable pet peeve.

My intense frustration aside, this is a very basic intro study into dosages for ketamine.  While some studies have shown positive effects lasting as long as a month, this particular study only showed it for up to 5 days.  And it seems the dosage is very tricky still, with some people responding to very small dosages, and some requiring larger ones.  The article notes, "each patient needs a tailored treatment plan," which is basically consistent with good therapy for any condition.

There is no single magic bullet cure for mental illnesses.  My own therapy plan has a lot of moving parts and requires a lot of work to keep up, but it's very worth it.  I don't anticipate ever needing ketamine, but I've had a bout of major depression before, and I suppose it could happen again if my spouse died or something like that.  So I'm glad to see some work is finally being done on this.

Even if ketamine never becomes a mainstream medication for treating depression, having it available for use in emergency rooms for severely depressed and suicidal patients would be a significant improvement over what we currently have.  I'll be keeping a hopeful eye out for further developments.