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

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

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?

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:

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.

Friday, November 30, 2018

Press Release: Autism Research Program

This year, as last year (technically last January), I went to Washington DC to serve as a consumer reviewer for the autism research program.  I was thankfully less tired this year than I was last year, and the trip was less rife with difficulties.  There was even a smaller workload this time around, which was a kindness since most of the work happened in October (a busy month for me).

I was pleased to be called on to serve again, and was pleasantly surprised to see many of the same faces for other consumer reviewers and scientists.  Shockingly, some of them remembered me too.  They even remembered me positively, which is good because I don't remember being terribly positive at the time.  Mostly I remember being grumpy and overwhelmed and tired.  

Anyway, there was less socialization this year, which was too bad, but I did still get to chat with a few scientists and handed out a few cards.  I have this bad habit of educating people I rub elbows with, but considering the guy running the panel told me he thought I was MVP reviewer, I suppose I must be doing okay.  

Here's the official press release:

The Peer Reviewed Autism Research Program (ARP) consumer advocate Sarah Frisch recently participated in the evaluation of research applications submitted to the ARP sponsored by the Department of Defense. Sarah was nominated for participation in the program by Autism Support of Kent County in Grand Rapids, MI. As a consumer reviewer, she was a full voting member, (along with prominent scientists) at meetings to help determine how the $7.5 million appropriated by Congress for Fiscal Year 2018 will be spent on ARP.

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Sarah said, “It’s challenging to represent so many different people, from teachers to parents to autistic children and adults of all kinds, but rewarding to know our viewpoints matter and are taken into account. It's also great to meet so many people that share my passion for bettering all of our lives.”
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY07. Colonel Stephen J. Dalal, Director of the Congressionally Directed Medical Research Programs, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.” 
Scientists applying propose to conduct innovative research focusing on improving the lives of individuals with autism spectrum disorders. The ARP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking. 
More information about the DOD’s ARP is available at the website:
Media Contact:
Erin Bolling, Public Affairs, 301-619-7783

Wednesday, November 28, 2018

Legwork and Life, week of 11/28/18

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 I have safely returned after the 12+ hour drive from my inlaws' house in Connecticut.  Thanksgiving went really well, to the point where I think it's in the running for "best inlaw visit ever."  The other major contender for that title would be my very first visit, where I was fairly cheerful because I was running on the "new relationship" high.  

I dunno if "cheerful" describes my demeanor this time, but my general attitude reminded me of my brother a decade back, save that perhaps I was a mite more talkative.  I'm not sure if that's a genetic thing or what, because I wasn't trying to replicate his particular combination of polite, thoughtful, and caring.  It's not the first time I've noticed the similarities on my better days, so perhaps this is how I would normally act if I wasn't slightly depressed most days.  

Regardless, I'm very pleased that I handled the transitions between home, Washington DC, and Connecticut so well.  My supplements arriving in time definitely contributed to the success, I'm sure.  The visit did burn through most of my blog buffer, which is somewhat to be expected, but I don't feel like the situation is dire or impossible.  I simply need to make sure to spend a lot of time in the next few weeks rebuilding it, before the December holidays strike.  

The trip back from CT was probably one of the nicest such trips I've ever made. There's only so pleasant a 12+ hour trip can be, but having a second driver to switch off with helps.  Music helps.  This year we actually added a third kind of boredom-reducer, a podcast, to the mix.  It wasn't my usual comedy joke advice podcast that I am still working through (it's been at least half a year, probably more, of me just listening to this one podcast to try to catch up).  

Instead, it was a theatrical Dungeons and Dragons (D&D) game podcast.  Basically, a GM runs a D&D campaign, records it, and then adds sound effects and music and such to make the game more immersive and entertaining to listen to.  Since my spouse and I both have a background in D&D, it was just fun to hear all the creative ideas the players and dungeon master came up with.  Since D&D is ultimately a cooperative storytelling experience, it's really cool to see what other people dream up, and it can inspire ideas of your own.  

I'm still pretty done with personally playing D&D, but I don't mind hearing about others' fun experiences, and this is kind of an exaggerated version of that.  It's also something my spouse and I can do together, which he values very much.  

Monday, November 26, 2018

Reading the Research: Identifying GI Disorders

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

Today's article deals with gastro-intestinal (GI) disorders, which are so commonly found alongside autism that some parents and professionals insist they're part of autism.  Regardless of whether you believe that (I don't), GI disorders do affect at least 25% of autistic people, and that number may be a great deal higher than our numbers show.

The reasons are manifold.  First, for autistic people who are nonverbal or have limited communication, it can be really difficult to convey that you're in pain, or what kind of pain you're experiencing, or that the pain is a regular problem.  Second, if you've had pain in a certain area for as long as you can remember, or pain in that area is a very commonplace occurrence, it may not occur to you to bring it up.  I suffered constipation for much of my childhood, and had no idea it wasn't normal.  The most that was said on the subject was teaching me how to use a plunger to unblock the toilet pipes after I was done.

Third, even if you're capable of conveying the information and recognize the situation as abnormal or relevant, talking about your bathrooming isn't really a normal or polite subject, so it's not necessarily addressed.  Fourth, assuming all these previous conditions are met, the autistic person may not be able to pinpoint exactly where it hurts when asked.  The article quite rightly points out that sensory processing disabilities exist, and can really get in the way of diagnosing a potential problem.  When asked to locate the pain, a person might point to their stomach rather than their colon, which muddles the issue quite effectively.

The article also makes the very excellent point that GI problems can lead directly to behavior problems.  This is a surprising revelation to some people, but it shouldn't be.  At least, not when you think about people who live with chronic pain.  In my experience, such people (including me) tend to be get frustrated more quickly, have less patience for things overall, and can be both aggressive and angry in the wrong circumstances.  Parents sometimes mistake these poor behaviors for symptoms of autism... but while autism can't be cured, GI problems can be.

With all this in mind, the researchers developed a short questionnaire to try to simplify the process.  At only 17 questions, it's not at all bad, and could be easily used in a doctor's office when a parent has concerns about their child's behavior.  And with an accuracy rate of 84%, it's significant enough to reasonably send a parent off to a GI specialist.

Hopefully their second study will come back with similar results, and this questionnaire can be adopted widely.  A lot of kids and adults could be spared a lot of suffering as a result.  

Friday, November 23, 2018

Worth Your Read: The Value of IQ

This is a short blurb about a documentary called Intelligent Lives, the subject of which is people with low IQ.  This is sometimes referring to as intellectual disability, or ID.  Autistic people can have IDs as well as other conditions like depression and anxiety, and in fact, one of the subjects of the documentary is autistic.

I wanted to take a minute here to talk about IQ overall.  In the educational setting, IQ measures intelligence.  To the general public, that's the beginning and the end of it.  A high IQ means you're smart and more likely to succeed, and a low IQ means you're not, and are less likely to succeed.

Now, I have a psychology degree, so I learned about IQ in more depth than most people do.  IQ, or Intelligence Quotient, is a measure of how well any given person learns in an educational setting, especially academic subjects.  That's all it does.

Does that seem like the equivalent of overall intelligence?  If it does, let me explain a bit more.  Academic subjects, like math, writing, history, and literature, are only a small portion of what a person draws on to be successful in life.  In addition to these, there is also:
  • Interpersonal intelligence: how well you sense others' emotions and motives, how well you handle disagreements, and how well you can manage and direct people into a working unit.  Autistic people, myself included, often struggle with this form of intelligence.  Because we're so different from others, it's not as intuitive to understand people.  
  • Intrapersonal intelligence: how well you know yourself, your reactions, your motives, your strengths, and your weaknesses.  This skill is important for taking care of yourself.  
  • Musical intelligence: how well you can keep a beat going, identify specific sounds, and even how good your sense of pitch is.  Perfect pitch is fairly rare in Western society, but approximate pitch (which is what I have) is more common.  Musicians usually score highly in this, for obvious reasons.
  • Kinesthetic intelligence: how well you can coordinate your limbs and fine motor movements.  Athletes tend to excel at this, but so do surgeons and gamers.  
  • Existential intelligence: your grasp of what life is about, why we live, and why we die.  This tends to come up in religious settings or philosophical ones.  
  • Spatial intelligence: how well you can visualize things in 3D.  Architects, sculptors, and graphic designers all tend to excel at this.  
Debatably, there are even more kinds than these.  The point being, though, is that IQ simply isn't a catch-all measure of what a person is capable of.  There are all too many high-IQ autistic people that succeed in academia, only to graduate and be unable to keep a job.  Lacking social skills, not understanding how to handle other people, and not having sufficient functional self-care skills (knowing how to do the laundry, keep yourself clean, and take care of a living space, for example), can make it impossible to handle the demands of adult life.  At least one piece of research agrees with me.

I count myself as a lesser example of exactly this phenomenon.  I wasn't supremely ill-prepared, and I'm not brilliantly high-IQ, either.  But college was definitely a difficult experience.  Even though it eased me into taking care of myself, it was still extremely challenging to manage attending all my classes, keeping my area clean, handling personal hygiene, and still remembering to eat and do homework.  I definitely let any non-mandatory social experiences lapse by the wayside for the first couple years, and often forgot to do all of my personal hygiene.  

My grouchy stomach usually ensured I ate, at least.  Even if the food often wasn't very good.  I may have spent most of my 3rd and 4th years in college eating mac'n'cheese for dinner, every night.  And my lunch was often nearly the same thing each day, although I did at least try to make that meal balanced.  

But in the end, I tried various full time jobs using my education and detail-oriented skills, and succeeded in keeping none of them.  The 9-5 schedule simply strangled my energy reserves until it ground me down to misery.  My moderately high IQ didn't help in the slightest for the demands of the real world.  

This documentary will show, in ways mere words can't express, that having a low IQ need not bar you from having a successful life, and doesn't reduce your value as a person.  I'm looking forward to attending the screening of it in my area.  The website for the documentary is here.  Check it out, and see if there will be a showing in your area.  

Wednesday, November 21, 2018

Legwork and Life, week of 11/21/18

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 Connecticut, where my inlaws live, and where I'm currently visiting to celebrate Thanksgiving with them.  This year, Chris' family gets us for Thanksgiving, and my family gets us for Christmas.  Next year it'll be the opposite.

I survived the first half of my trip!  The expedition to Washington DC for the Autism Research program was a success.  They might even invite me back next year, it remains to be seen.  I may have slightly made an ass of myself last year (I was less than impressed with all the genetics and mouse models when autistic people are literally dying from lack of support services), but not as much this year.  I suppose that probably bodes well for the future.  I can only be called to serve so many times, but they do seem to appreciate having me around.

Due to nondisclosure forms, I don't get to talk about what I reviewed, but I can say I was a lot happier with this year's crop of applications than I was with last year's.  It was also cool to see some of the same scientists and other consumer reviewers as last year, which was helpful because it's really stressful to get shoved into a room with a bunch of strangers and be expected to interact with them for hours.  They do make things easier by giving everyone nametags, but even so.  I definitely didn't remember pretty much anyone's name, but due to the nametags, that didn't matter so much.

Now I get to work on surviving part 2 of my trip, which includes the added bonus difficulty of not having my supplements every day.  I was an enormous derp and miscounted how many days the trip would be.  So I'm going to be having my pills every other day, and hoping the ones I ordered to be shipped here will come in time.  "Less than ideal" is definitely an understatement.

It should be okay... the pills should arrive by the end of today at some point.  I just really want them sooner because the house I'm staying in is quite old by US standards (nearly 250 years old), and thus quite dusty and possibly molding or mildewing somewhere not easily accessible to humans.  I get fuzzy-headed, grouchy, sad, and anxious when I'm here.  The pills offset that a great deal, though not entirely.

I do still have the generous offerings Chris' family provides to help offset the house as well: an air purifier, a space heater to help with the open window in the room, an electric blanket, and four of those weird Himalayan salt lamps.  I have absolutely no idea if the lattermost do anything, but the light they shed is nice, so I'm not complaining.  I might get one myself and use it as a nightlight, regardless of any claimed positive health effects.  The light they shed is orangeish pink, rather than any kind of blue or white. 

Anyway, wish me luck with surviving Thanksgiving!  

Monday, November 19, 2018

Reading the Research: Disability and Poor Mental Health

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 helps to clear up a misunderstanding about autism and mental illnesses like depression and anxiety.  Autism, after all, often comes with depressive disorders and anxiety disorders, such as bipolar disorder, major depression, obsessive-compulsive disorder, and panic attacks.  These things can be so well-intertwined with the symptoms of autism, that people equate the conditions.  Having autism, to some people, includes having depression and anxiety.  

While this is generally accurate, statistically speaking (the statistics vary, but 80% is often quoted), it's not accurate in the absolute sense.  Autism, as this study shows, does not innately include depression and anxiety.  Instead, the cause of those conditions is social stress, and the stigma people attach to our lives.  

In much plainer words: we aren't broken (soul-less, rude, inhuman, un-teachable, hopeless, weirdo) people, but other people treat us like we are, and that's painful and hurtful.  Over time, that stress and pain add up, and mental illness can result.  

The researchers describe this stress as "minority stress," equating it with the kind of systematic stress that racial minorities suffer in the US.  The good news about this is that we already know how minority stress can be handled: better education, integration, and better support systems.  When people are exposed to autistic people young (or when they're older, if they're flexible-minded), they can learn to treat us like we're people instead of weirdos.  Our eccentricities can be considered acceptable, even if they're not entirely understood.  

In short, the stigma can be undermined.  With fewer people subscribing to that stigma, and treating us like second-class people, the mental health of all autistic people will improve.  And that will mean fewer suicide victims.  

Friday, November 16, 2018

What's a Social Life, Anyway?

I turned 30 this year.  Societally, 30 is when you're supposed to have your life together.  That includes your social life as well as your professional life.  Since I'm autistic, the social life is the more crippling factor that contributes to the professional life's success or failure.  Autism is, after all, a social disability.  I simply don't think like most people, and didn't learn to socialize and act the same way most people do.

Autism, then, can make for a difficult time making friends, holding conversations, and managing social expectations.  In short, autism can make having a social life very difficult.

When I was a child, a stinging retort some children would throw at each other was, "Oh, get a life!"  Now that I'm 30, I started to wonder if I'd succeeded, and what exactly constitutes a social life.  A social life, I suppose, is the summary of a person's relationships with the people around them and with the general public.  So what's a good one look like?


I expect the definition of a good social life varies based on who you ask.  Some people value achievement, and connections that advance their careers.  Some people value pleasure, and favor people that are entertaining to be around.  Others value social change, and make connections with minority groups, politicians, or nonprofit organizations.  Still others seek truth and understanding, and look for others that can help shed light on difficult questions.  And some value a particular hobby or profession, and seek people within their favored subjects.

I think most people tend to opt for a combination of these and other values, favoring some more strongly than others.

The relationships we seek decide which events we spend our time on. For example, a fancy dinner party for social climbers, a church's Bible study, or a choir or other interest group?

All of my examples so far have been groups you have to leave the house to attend, but you can also attend events virtually.  The online computer game I play with my spouse involves the two of us spending a couple hours per week with people from California, Pennsylvania, Louisiana, and other US states.  We all meet up at a scheduled time and play a very challenging piece of content in the game together.  Personally, I feel this is a legitimate use of my time, but I expect there's at least one person out there that feels that if you're not meeting people outside your house, it doesn't count.  That theoretical person and I will just have to disagree.


Then, too, you need to keep in mind how much social interaction you need, and how much you can take.  I, like most humans, have a certain level of minimum required social interaction in a week.  Less than that level, and I start to get lonely and sad.  My depression gets worse, and my anxiety ramps up.

But especially for introverts like myself, I think there's also a maximum level, after which I run out of energy and become unhappy.  If I go to events all the time, and fill up my schedule, I start to get crabby and short-tempered.  Then that starts leaking out on people that don't deserve it, and that's no good for anyone.  Instead, I have to set aside some time in my day to be alone.  That includes being away from my spouse, by the way, even though I love him very much.  I simply need alone time as part of my self-care. 

So a good social life balances your alone time and your social time.  You don't run out of energy, but also don't starve yourself for socialization.

It's a bit of a tricky balancing act, and I feel like most people don't really have to think about it.  I do, though, and it's not much fun.  The idea of limited energy has been posited before by someone much wiser than me.  If you're not familiar with Spoon Theory, I strongly suggest you click that link and read the short story that explains it.

Putting it Together

So, perhaps a broad definition of "a good social life" would be "a social life that meets your personal needs and values."  Which then begs the question: what are my needs and values? 

Personally, I think my need for social interaction is fairly low.  I'm fairly heavily introverted, and I spent much of my childhood without proper friends, only interacting with people when necessary.  A good book was a much better companion than another person.  Nor do I seem to benefit much from having the sound of human voices nearby (such as from a TV or podcast).  I've heard of people having those on while they're at home "for company," which struck me as kind of odd.  But either way, I'm fairly happy by myself, and rarely suffer the effects of under-socialization.

Over-socialization is a much larger problem for me.  I seem to have something like a daily ration of energy, as well as a weekly ration.  Exceed either one, and the effects linger.  Managing how much socialization is too much is definitely an art, not a science.  I can spend hours in my spouse's company and spend very little energy, for example.  Or for the same amount of energy, spend 10 minutes with a difficult stranger.  So what kind of people I spend time with matters, and what kinds of expectations are put on me also matter.  A fancy party where I have to dress up and make polite conversation costs a lot more energy than a small get-together at a friend's house where we'll be watching a favorite TV show and eating takeout. 

Values-wise, I seem to currently favor people that are interesting to be around or share similar interests to me, with social change and truth being secondary factors.  I should probably be prioritizing my career more highly, but that's exhausting and I tend to run up against my energy limitations. 

My regular week's events include:

  • three "catch up with friends" events, 
  • one "watch a TV show with friends" event,
  • two "exercise with parents" events (one of which inevitably bleeds into lunch and chatting, and why shouldn't it?),
  • one regular church service (where I sometimes run the sound board),
  • one Bible study event,
  • two regular guild meetups in World of Warcraft to play group content together.
Onto this list, there's also the monthly events, which include attending an autism parent support group, attending my condo association board meetings, and going to hang out with a group of autistic adults and play card games or visit local attractions.  (There's also this blog, which is my daily job, and household chores, of course.)

In the End

I spent a lot of my late 20s worrying that I wasn't doing a good enough job managing my life, and that I was becoming a shut-in.  And indeed, I do spend a lot of time indoors and in front of my computer.  But I think, looking at that list, that I'm probably doing okay by way of having a social life.  I suspect I spend more time on self-care than most people do, but when the world is so hostile to people like me, self-care is essential.  Also, my work and my play are mainly at my computer, so it kind of makes sense.  

Hopefully, as I age, I can continue to keep a good balance in my activities and energy levels.  Looking at my list, I feel like I should probably add in a weekly autism-related activity of some kind.  I'm not really sure what to add, though.  The local autism support group doesn't really need clerical help (I already asked), and I don't know what other help I could offer them.  I suppose I can ask the next time I see the chair of their board.  

Beyond that, I'm not really sure what else to look into.  But I expect that's merely because I haven't looked very hard.  Guess I should do that.