Wednesday, November 29, 2017

Legwork and Life, week of 11/29/17

I survived!  Thanksgiving went fairly well.  Chris and I were 45 minutes late, but we did bring the bread, applesauce, green beans, and potatoes we were supposed to bring.  I was told by my mother-in-law never to serve an untried recipe to guests, and the green beans kind of held true to that advice.  The recipe I used called for about twice as many almonds as it really needed, so the recipe ended up being like 1/3 almonds, 2/3s green beans.  Little bit less of a topping and more of a "aaand these are EVERYWHERE..." situation.  Other than that they turned out okay.

Next year Chris and I might try to make applesauce, rather than bringing storebought stuff and stirring in cinnamon.  It was fine, it just wasn't as flavorful as homemade stuff.  Some of the applesauces Mom has made in the past have real zing to them.  The storebought stuff was just sort of bland, and there was cinnamon in it.  It wasn't terrible, it just wasn't nearly as interesting.

In other news, sore muscles are now a way of life for me.  I think I should probably get a little book or something to track how much weight I lift on each machine in the gym.  I've been taking it slow, and not adding too many exercises in at once, but my basic exercise routine starts out with 30+ minutes of cycling, followed by 10-15 minutes of elliptical, followed by abs and back exercises... and I've added in an arm muscle group for kicks and giggles.  Which is why I now have sore arms, for the second week in a row.  My arms are pathetic and sad, and they will never be pretty and semi-muscular and strong, but apparently I can still bully them into building invisible muscle.  (Invisible, because when I flex, you can't really see there's muscle there.)

Also new, I finally got in to see my new doctor.  Having married Chris, I became ineligible for Medicaid, so we got me onto his insurance and I needed to find a new doctor.  I got recommendations from my LENS doctor, who gave me a couple names that she strongly recommended.  I went for the first one, because why not, and it turns out that this first recommended doctor is in fact my LENS doctor's own personal doctor.  I was just expecting a professional recommendation from my LENS doctor, not a personal recommendation, so it was somewhat startling and gratifying to find that out.

Anyway, the new doctor seems promising enough.  She seemed to take an interest in me as a person, particularly since she has a younger relative with autism.  That was comforting, as the process of finding the building with her office was very anxiety-provoking, and the nurse who processed me was more professional and businesslike than warm and caring.  The building itself is an all-in-one medical facility, with "EMERGENCY" written multiple times on the front of the building.  Not wanting to be mistaken for someone in dire need of medical care, I drove to the back of the building... and promptly found out that I needed to be on the lower level and there were no stairs or obvious elevators at the back of the building.  So I had to walk to the front side of the building, where there were stairs... but no apparent signage for where the office was.

Fortunately the front desk staffers were happy to direct me, but by that point I was rather wound up and anxious.  The person who checked me in for my appointment was very sweet and warm, which was comforting right until the nurse came for me, and she wasn't.  But, to be fair to her, she was quite pregnant and probably quite footsore and tired by the time my appointment time rolled around.  This sadly didn't occur to me at the time, so I was left wondering whether I had done something to be annoying or offensive.  Once the nurse was done with me, I was left alone for what felt like at least 20 minutes, which is quite a long time to stew on your failure to get on with the nurse and navigate the building.

But when the doctor actually did arrive, she was very personable and very interested in hearing about me and my concerns, so overall I guess it was an okay experience.  I went back there yesterday to get some blood work done, which was a relatively painless experience compared to donating blood.  I think I made the poor staffer feel bad with my wincing about the needle, though.  I am unfond of the blood donation needles, which are about the size of the vein they're trying to harness, if I recall correctly.  And it's so rare for them to be able to get the vein the first time, I pretty much just pull a face and cringe when someone goes to take my blood.  The needles they use for blood work are much smaller and easier to get put in properly.  It wasn't a single poke and done process for this, but it was much less painful and upsetting than what I'm used to.  I tried to convey that and my appreciation to her, but I'm not really sure I succeeded.

Lastly, yesterday was the first orientation webinar for my consultation with the federal government about their research program.  It sounds like I'm not going to have to harangue the government about focusing on helping people with autism rather than curing autism.  But the scientists themselves might be another story.  The webinar took less than an hour, and about all I had to do was introduce myself.  It mostly just covered handy-to-know things and was meant to get us ready to start doing critiques and such for the research projects we're reviewing.  None of the other, more experienced reviewers volunteered to be my mentor for the process, but I guess the head of operations is going to find someone.

Honestly the whole thing seems like a cross between being very well organized and being a complete mess.  I only just found out yesterday that there will be another webinar for all the reviewers, including the scientific reviewers, this Friday.  But nobody told me, or the other consumer reviewers, so now I have to annoy my mother by being late to the Friday exercise thing.

I mostly seem to be doing okay with doing the work scheduled to me thus far... but of course we haven't gotten into the real meat and bones of the work yet, so I guess we'll see how I handle the rest of this.  The experience has already sent me scrambling across town to find a fax machine (seriously, who uses fax machines any more?!) and having to pester Chris to do the same.  Maybe, if I'm really lucky, I won't have to scramble for anything else for the rest of this job... 

Sunday, November 26, 2017

Reading the Research: Physical Health and Social Skills

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 about the ramifications of poor social skills, which you'll recognize as a major hallmark of autism.  The research here shows that poor social skills are linked to poorer mental and physical health.  Social skills are measured for this study as four different skills: the ability to provide emotional support to others, the ability to share personal information with others, the ability to stand up to unreasonable requests from others, and the ability to introduce yourself to others and get to know them.  Speaking as someone with sub-par social skills, that seems like a reasonable set of measurements, at least if we're only measuring skills rather than emotional perceptiveness and responsiveness. 

It's been known already that poor social skills were linked to poorer mental health, specifically depression and anxiety.  This study is unusual in that it also links poorer physical health to the problem.  The key to the worse physical health appears to be the associated loneliness and stress that comes with the poor social skills.  Because people who don't interact as well or as successfully tend to experience more loneliness and more stress in their lives, the associated problems are also ramped up. 

This is all patently obvious to me, and perhaps to you as well.  Perhaps the major reason autism is comorbid (associated) with depression and anxiety is nothing more than this same effect, amped up because of how differently we experience the world.  Fortunately for me, one of my saving graces that got me through high school and college seems to be that I can handle a great deal of stress.  Or could, anyway.  Bets are off now that we've been fuddling with my brain, I suppose.

The article candidly notes that most people with poor social skills don't know they have poor social skills, since social awareness is tied into those social skills.  I like to think, at this point, that between my diagnosis and my oversensitivity to various things, that I at least have somewhat of an awareness of when I've messed up an interaction.  Sometimes it's more than 15 minutes after the fact, but, y'know... 

It's not all bad news, anyway.  Social skills are skills, not innate talents.  They can be learned.  That's harder for people with autism, but it's still doable.  You can have social skills classes, counseling/therapy, or even just attend group events to get lots of practice in.  The head researcher strongly suggests that parents make sure to get their kids into such group events, like summer camps, sports programs, church groups, etc.  I would add "public school" or "supportive and diverse private school" to that list, personally.  My public school experiences were mostly uncaring and unhelpful, but what they did do was give me a lot of contact with people.  Post-elementary school, that was a good thing, not a bad thing. 

I recognize the necessity of home schooling for some kids on the spectrum, when the school environment literally can't be tailored to be a good place for the child to learn.  If any amount of noise is enough to set your kid off, or the lights in the classroom drive them nuts and the bulbs can't be changed, or your kid learns in a way that is so far different from what the school system offers, then homeschooling is definitely your best way to go. 

But that should be only done in those special cases, in my opinion.  Schooling in the school system involves literal hours of contact with your peers, every day, that are just... gone, if you take away school.  You can't balance that out with occasional after school activities and cute little groups that only meet for an hour per day, or less.  You just can't. 

I'd love to blame my weight problems on this loneliness/stress effect this study mentions, but I'm not sure I can.  My social life is a bit limited, but I do have a spouse, and we haven't killed each other yet.  I do think my stress level is still a lot higher than the average person's, so maybe that's part of the reason I can't seem to lose weight?  But hopefully the days of that are numbered.  I'm exercising at a full fledged gym two days a week now, and that means I can build more muscle and get longer quality exercise without annoying my neighbors with lots of jumping.  Here's hoping!

Friday, November 24, 2017

Book Review: Iris Grace

Iris Grace: How Thula the Cat Saved a Little Girl and Her Family is a "my family's story with raising an autistic child" type book.  I've read at least a dozen books in the same category at this point, some better than others.  Of all of them, this one was probably the most fun to read.

Iris Grace, for those not familiar (like me before I read this book), is a autistic child artist with remarkable talents in impressionistic and watercolor art.  Her story has become something of an international success, and her work is kind of gorgeous.  You can find the official website for her work and story here.

From reading this book, I would gauge that Iris would qualify as at least "moderately affected" by ASD, which is to say, she has (or had) a lot of barriers to learning to speak, learning how to relax, filtering out excessive noise, dealing with new people, etc.  So this is not just another "my kid with Asperger's/High Functioning Autism, and our trip through finding what worked."  The book describes Iris' difficulties in detail, and they were extensive.  I suspect if you asked my parents, they would tell you I didn't have nearly as hard of a time when I was growing up.

Onto the book.  First and foremost, I should point out that the marketing and title is a little disingenuous.  While Thula the cat was definitely an important addition to Iris' development and growth, I personally feel the biggest asset to Iris' successful development was her parents  The cat, if the book is accurate, is an amazingly sensitive, helpful, responsive therapeutic companion, beyond the ken of most cats.  It genuinely cares about Iris, has some of the loyal, hard working traits of a dog, and acts as a service animal.  That is a great thing for someone on the autism spectrum.

That said... having a comforting and loyal animal helper is good, but it's not going to teach you social skills, bring you opportunities to try new things, or develop friendships.  Those things, her parents had to provide.  And provide they did, often by trial and error, and with lots of careful observation, creativity, resources, and patience.  From art supplies to animal companionship to carefully-tailored home-schooling, her parents stretched themselves to their emotional limits and beyond, nurturing their daughter's creativity and interests.

But I suppose the book probably wouldn't have sold as well if it had been titled, "Iris Grace: How We Leveraged Our Abundant Love, Patience, Time and Resources to Bring Up a Talented Artist."  That would be a more accurate title, given the contents of the book.  The family in question is definitely on the "well off" side of things.  That fact shouldn't cheapen their efforts in any way, because it's not like they ignored their child and hired help to get around her barriers and disabilities.  Both parents were very much involved in Iris' life, personally acting as her teachers, caretakers, therapists, etc.  I point out the fact of their wealthiness, however, because if both parents had been working full time jobs outside the house, I suspect Iris' artistic skills would never have developed, or reached such a wide international audience.  She would have simply joined the ranks of autistic children relegated to being called, "disobedient, non-communicative problem children."

Looking at the gorgeous and complex interplay of colors in the artwork peppered throughout the book, that would have been a sad loss.  Which makes me wonder what talents lie in other non-verbal or low-verbal autistic children and adults, which we're deprived of right now, due to lack of time, understanding, and resources.

Among the things Iris' parents did right was spending a lot of time trying to get into her world, rather than insisting Iris immediately engage their world and assuming that was the only correct way to be a person.  Her mother describes experiencing the world through watching Iris engage with it, especially their garden and other outdoor areas.

In addition, they individually tailored her education and social experiences.  To the best of my understanding, when looking for a good school system for their kids, most parents simply toss all their kids into the best school system they can find, and call it good.  But Iris' difficulties with clothes meant that none of the schools in the area would work.   The school uniform was required, they said, and assured the parents that any difficulties would be handled.  Uncertain that this was a good plan her parents took it upon themselves to homeschool her, wracking their brains to align her interests (cats, outdoors, art, etc) with the required subjects for an education (math, science, reading, writing, etc).  When there was no social group (children's club) that would meet Iris' growing social needs, they made one themselves and hosted it at their own home.

They also didn't try to push Iris too hard at once.  They did put her into new situations and try new things, but they were always ready to call it quits if it proved too difficult.  There was always a place for her to go and relax, or items of comfort to help her cope with the uncertainties and unpredictability of life.  This is very important for people on the spectrum.  We always need a Square One, a safe place or person to rely on.  Sometimes we need a lot of Square Ones, depending on how complex our lives are. 

In an ideal world, every autistic child would have this level of care and attention paid to their needs and interests. I hope that some day this will be the case.  In the meantime, it's heartening to read this story of parents that faced the trials of having an autistic child together, gave it their all, and found that in the end, their child faced her difficulties and surpassed their expectations. 

Read This Book If

You like uplifting stories, want a good example of how to work with an autistic child successfully, or love a good "people and animals are better together" story.  This is a very optimistic book, and an insightfully descriptive one.  Very approachable, very easy to understand.  Throughout the book are pictures of Iris as she grew, cute little illustrations, and prints of some of Iris' artistic work, which is gorgeous.  A delightful change of pace from the dreary pessimism and weakness-focused stories that usually grace my library's shelves. 

Wednesday, November 22, 2017

Legwork and Life, week of 11/22/17

I feel somewhat ill today because of my period, but that's about the only bad thing to report this week.  Actually, I'm expecting this bout of annoyance with my birth sex to be shorter and less painful than usual due to my new exercise schedule, which will be, at minimum, 2 days a week with at least 45 minutes of sustained exercise.  This is due entirely to my parents, who both exercise religiously and like to see me.  Their new home, the retirement complex I mentioned awhile ago, has an attached gym.  It's not the fanciest, most up-to-date exercise area I've ever seen, but the equipment seems to be serviceable, which is all you really need.

Anyway, I've reinstated my habit of using a recumbent bicycle for half an hour or so, while reading a book or playing a video game or fiddling with my Rubik's cube.  I tend to tack on 10-15 minutes of exercise on the elliptical machine after that, then a couple of the strength training machines.  This is more or less one of the exercise patterns I developed back in college, when I had a gym within a 5 minute walk of where I lived.  I really miss having that, honestly...

Last week I mentioned being on the fence about what to do for my graduating hairdresser/beauty student/person-friend.  She's leaving Grand Rapids for her dream job in Chicago, which is awesome for her and sad for me.  We sort've became friends over the last few months, and she's responsible for my hair being all blue and short and such.  I'd been kicking around the idea of making her graduation a little more graduation-y.  I guess the only celebration they do at the school is people saying goodbye to you when you clock out for the last time.  No cake.  No celebration.  No party.

That's boring and dumb, so I bought a chocolate cake, a trio of balloons, and a card.  I don't feel the best and would rather stay in and be miserable where it's warm and cozy, but she's only graduating once, so I'm just going to have to take painkillers and suck it up.  I'm not really sure how it's going to go, since the entire invitation was, "I graduate at 8pm on ________, you're welcome to come if you'd like!"  But I figure at minimum, I can congratulate her, give her a hug, hand her the cake, card, and balloons, and tell her to make the world her oyster.  Some of her family will also be there, so I'm figuring they'll probably want to go off and do family stuff, and I won't be invited.  Which is fine, particularly considering my state of pain/illness. 

In other food-related news, Thanksgiving is coming.  Conveniently for me, my parents are now 5 minutes away from where I live, so we're getting together and dragging Grandma over and having a nice family meal.  Chris and I will be responsible for making fancy-ish green beans, and riced potatoes (not mashed because Mom and Chris both have issues with dairy).  Chris is also thinking about making some of his rosemary bread, which is quite good, and we'll probably bring a dish of unsweetened applesauce as well.

Meanwhile, Mom and Dad are going to handle the turkey, pies, appetizers, cranberry sauce, and a different vegetable or something like that.  I think we're mostly going to try not to eat until we all go into food comas, but it's Thanksgiving, having an abundance of food is traditional.  It should be a nice meal, though, since Mom and Dad have managed to unpack and put away enough stuff to make room for people milling around and such.  And they have couches and plenty of chairs and such, unlike our place.  Also unlike our place, their apartment complex has elevators, which makes it much more friendly for my grandmother to visit.

All told, I'm looking forward to it. I just need to make sure the blog doesn't fall by the wayside in all the food preparations... 

Monday, November 20, 2017

Reading the Research: School Experiences

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 research article is one of those advancements of science that makes me say "Well, DUH" to my computer, and wish science was a little bit faster about coming to these conclusions.  The study examines the effects of negative and positive school experiences by reviewing 17 previous studies on the subject.  In psychology and some other fields, this is called a meta-analysis.  It's an important tool for presenting and summarizing the current direction of a subject.

In the study, the researchers noted that self-esteem and self-perception in autistic students is linked closely with how others treat them and interact with them.  If others' attitudes and reactions were negative, the autistic students tended to internalize those negative attitudes, and feel more limited and like outcasts.  Naturally that's bad all by itself, but it also lends itself to isolating oneself and an increased chance for mental health problems.

The opposite, of course, was also true, if less common.  Positive, supportive school relationships helped the autistic students function better socially and improved their morale and self-esteem.  Which snowballs into more confidence and more practice socially, and thus a better outcome.  As such, the researchers stressed the importance of creating a culture of acceptance for all students in schools.

As a child, I attended two of every type of compulsory US school.  I had two elementary schools, two middle schools, and two high schools.  The atmospheres were different in each one.  My first elementary school was a Christian school, and I feel like the teachers really cared about their students.  Unfortunately, they didn't always understand them, and their understanding of how to help an autistic student blend well with their peers was... um... nonexistent.  And that's how I got bullied mercilessly, every day, from at least 1st grade to 3rd grade (after which we moved away).  Needless to say, I can strongly vouch for the isolating effects of peer rejection.  I learned not to like school at this age.  I also learned very early that people are terrible, and that adults couldn't be trusted to solve my problems.

My second elementary school was a public school, many states away.  We'd moved because of my dad's job, but it also gave me the chance to start over and not be a bully target.  I continued the isolating effect, however, figuring that since people were terrible, I would much prefer to be left alone.  So mostly, that's how it was.  Unfortunately, shunning my peers couldn't save me from my teachers, and my 4th grade teacher was a self-righteous bully.  It was common for her to berate me or other students in front of the whole class when we did something wrong.  And her voice carried quite well across the entire classroom and at least halfway down the hall.  She thought she was doing us a favor, from what I can recall.

The only other things of note for that school was that I was placed in the gifted program, where I think maybe the teacher cared about us a little bit (smaller class size, but sadly extra homework on top of the regular homework).  But we were only there for a couple years, as job changes hounded my childhood.

My first and second middle schools were actually part of the same public school system.  I guess they had a weird system, housing two grades in one school, and two in another.  It was a different state, again.  I still didn't fit in, and didn't want to fit in.  But because the mentality of my peers had changed, that was no longer "weird... whatever" territory.  It was now "kind of cool" territory, because everyone was now trying to fit in and figure out who they were.  So I had admirers and enemies. 

My first in-person friendships developed from a "Friendship Group" program.  The program had literally nothing to do with autism or special needs.  It had been instituted to help people who'd moved into the school system in 6th grade, the second year at this middle school.  Because almost everyone started this school in 5th grade, people that arrived in 6th grade were disadvantaged.  So this program was meant to help develop friendships for those people... though it did so by clustering them all together rather than trying to help us mix with the others.  Sort of "band of misfits, be friends" mentality, I guess.  Those friendships lasted through my first high school, though, so perhaps I shouldn't snark too much at the program's aim.

I found in middle school that the teachers were mostly apathetic again, though some did care here and there despite the meanness, pettiness, and viciousness of the kids in that age range.  And the changing attitudes of my peers were confusing.  I was acting the same as I had been, but everyone was treating me differently.  This lasted right through the second middle school.

By high school, some of the people in the school system had gotten used to me, and the "kind of cool" factor had worn off.  It was probably a positive step, thinking about it.  The "kind of cool" factor was itself isolating, to be honest, so it was better than people had started to accept me as "strange, but okay."  The in-person friends helped with that.  They more or less forced me to join the Anime club at the high school, which turned out to be a good experience. 

That club was filled with odd people who didn't care if you were odd so long as you weren't an irredeemable jerk.  And I wasn't: my operating procedure was to not get involved, but if someone got involved with me, to treat them fairly and even kindly unless they were a jerk.  And that was how earned the club's "Most Helpful Member" award and the snarky title "Cordbitch."  Which was their honorary way of conveying that I was the person who set up the DVD player most days.  I was also labeled "a cool freshman" due to the fact that I wasn't hyper and obnoxious, and accepted for who I was.

The acceptance of some of my peers, in a form I could understand and appreciate, was what let me finally stop shoving everyone away and start learning to be a more socially-well rounded person.  Mostly I listened, rather than interacting.  But the anime taught me some things, and my friends taught me some things, and my observations taught me some things.  Which was good, because without those things my last high school would have ruined me.

When the inevitable job change happened, I left behind a small network of friends that I'd painstakingly developed.  This was... rather unfortunate, to say the least.  More unfortunate, though, was the school in our new home.  Located in a small town, it was exclusionary, like my first middle school, but worse.  Unlike my first middle school, the teachers and school gave zero craps about whether you fit in.  And so, odd and outsider that I was, I didn't.  And after meeting the sharp ends of all their tongues, I didn't want to even try.  Who would want to be a toxic embodiment of cruelty and exclusionism?

I gave them all the middle finger, and instead found my friends (and my first boyfriend) in the other outcasts of the school system.  The rule of thumb was: "if you're not from around here, you might actually be a decent person."  It was a good rule of thumb, and worked really well.  I didn't forget my lessons, and joined the fencing club and created my own anime club.  There I met and gathered together the people worth knowing in the time that was left to me.

In the end, in my experience, the basic premise of this study holds up very well.  I didn't have peer acceptance in elementary school, nor in middle school (not really).  The seeds of it were built in middle school, and started to sprout in my first high school.  After which I almost began to start succeeding and branching out.  Moving to a new area full of horrible people throttled that progress, but didn't make me unlearn the lessons I'd already learned, and so I was able to succeed in a much more limited sense despite the rejection of my peers.

Now, imagine what my story would be like if all the schools had inclusionary policies in place, and groups for outcasts had been a normal procedure, rather than a reactionary afterthought in a single school. 

Friday, November 17, 2017

"Colorblindness", Respect, and Person-First Language

Does anyone remember, a few years back, when it was fashionable to say, "I'm color-blind" in regards to a person's skin tone, ethnicity, etc?  The idea was to convey that the speaker wasn't racist, because they didn't see the skin color and therefore didn't judge the person based on that factor.

It was also crap.  The person never stopped being able to see in color, and everyone's at least a bit racist, myself included (to my great annoyance), regardless of whether you can see.  Racism, you see, comes in a lot of different flavors.  Most racism today is not the facepalmingly obnoxious old grandfather or grandmother yelling about how those darned black people (insert your own N word here) are terrible or violent or inherently stupider or something equally incorrect.  That type of racism has become socially unacceptable, and has declined in the last couple decades.

Unfortunately, aversive racism, or implicit racism, lives on.  This refers to the tendency to avoid minority groups and unconsciously prejudge them based on stereotypes.  Notably, this type of racism exists whether the person consciously harbors ill-will towards a minority group or not.  Basically, otherwise egalitarian people can still be quite racist, based on their unconscious actions, assumptions, and expectations.

What does this all have to do with autism?  Well...  I've commented on another civil rights movement and its relevance to autism before, but for this post, it's a comparison between racism and ableism.  A really easy one, from where I'm sitting.  Ask a person in a wheelchair or mobility device whether they've been avoided or otherwise discriminated against by strangers.  Bet you'll get a really instructive answer, especially if the person has lived a few decades in that wheelchair/mobility device.

But a person in a wheelchair is just an easy example.  It's a very visible disability, and much lip service (and some actual work) has been done to make buildings and other environments more accessible for wheelchairs and other mobility devices.  For an invisible disability like autism, it's a bit harder of a sell, because we don't necessarily look disabled.

The disability version of racism is called ableism.  It's the prejudice of those without disabilities against those who do have them.  It's defining a person first and foremost by their disability.  It's the assumption that people with disabilities somehow deserve them.  It's stereotyping someone in a mobility device as "less capable" or "less verbal" than someone without one, without knowing that person's particular physical, mental, and emotional capabilities.  It's assuming you know what's best for someone with disabilities, without bothering to get their input. 

I had the privilege a few days ago, as I sometimes do, of sitting in on a parent support group.  It originally began as a support group for parents with older autistic children, so around transition age (16-18) and older.  Now, I strongly respect parents, especially those of special needs kids.  Raising a regular kid is hard enough.  Raising a special needs kid is at least one order of magnitude harder.  But I've noticed they tend to fall into some traps.  Such as using the word "never" when it comes to their kids.  Some examples: "He'll never live alone."  "She'll never have a job."  "He'll never get off the computer long enough to do anything else."

This makes me more than a bit agitated and frustrated.  You don't know what kind of capabilities your child has, in the end.  Every person may have different limitations and capabilities and some people may truly never have the capability to live independently, or hold a full time job, but as people grow, those capabilities also grow.  I think it's probably very easy, as a parent, to miss that growth when you're constantly stuck dealing with the kid's worst aspects and failings.  Particularly since special needs kids can develop at a much slower rate than normal children.  At almost 30, I think I might have managed to be about emotionally 20 at this point.  And cognitively, I feel about 50, at least.  Some days, a lot older and more cynical depending on the current news.

These statements, in addition to assuming these capabilities will never occur, also assume that these situations are ones the people in question want.  Many people absolutely do want to live independently, and it's assumed by American culture that this is what everyone will do.  But that's not necessarily what every person wants.  Some autistic and disabled people are happier living at home with their parents, or with their siblings, or in a group home.  For jobs, some people can hold at 40+ hour job, but others are happiest doing part time work.  And there are a lot of kinds of jobs, too.  You can't assume that because a person doesn't do well in a full time janitorial job that they won't do well in a full time farmhand position, or landscaping job, or some other type of job.  You have to work with the disabled person, trying to line up their interests to a potential job.

All too often, autistic people aren't consulted about these things.  It's a blind push toward what's assumed is "best for us" based on what the world dictates for people who aren't disabled.

Person-First Language is another example of this.  It was decided by someone, at some point, that it is disrespectful to refer to someone by their disability ("autistic") and people should instead be referred to as people, with their disabilities tacked on afterwards ("people with autism").  This was meant to promote the humanity of people with disabilities.  It was a good effort... but one that's eventually drawn flack for not really doing what it was supposed to.  For starters, the most respectful way to refer to someone is how they choose to be identified, not how you assume they want to be identified.

Longtime or extra observant readers of this blog will recognize that I usually refer to myself as "autistic" rather than "a person with autism."  This is twofold.  Firstly, because Person First Language is awkward on the tongue.  Secondly, because I blend relatively well with neurotypical people but believe strongly in promoting the welfare of all autistic people, I voluntarily put my diagnosis first.  This, I hope, humanizes all of us on the autism spectrum, by putting a face to us.

Because unfortunately, we need that visibility.  We need that humanization.  We need to be listened to when we tell people what we need.  Because people are still assuming they know what's best for us, when we can communicate what we want.  Because "colorblindness" for disabilities exists, too, with people insisting that "they don't see the disability."  And just like how pretending you don't see skin tones doesn't fix racism, ignoring disabilities doesn't fix ableism.  It merely makes it worse. 

Wednesday, November 15, 2017

Legwork and Life, week of 11/15/17

Well, it has certainly been a week.  I'm sleeping a bit better now, in part because I finally got a new pillow, and in part because I sprung for an electric blanket for my birthday, with the help of my mother-in-law and my grandmother.  The pillow I'd been using was well over a decade old, which I have since learned is heresy.  You're supposed to replace them every 18 months, I guess.  I went to the chiropractor on Monday and he ended up having to adjust different parts of my spine, so I'm going to guess my misaligned neck was partially because of the ancient pillow.  Oops.

The electric blanket, though, I'm guessing is the bigger part of my better sleep.  I grew up having an electric blanket available for cold nights, and while I didn't think it was an essential part of my sleep, I have been feeling much better when I wake up since adding it and the pillow to my bed.  It's very comfy and nice for naps and being cozy, too.  Chris has an electric mattress pad, but even though heat rises, it's just not the same.  You can't wrap a mattress pad around yourself on a cold night. 

In other happy news, Monday was my wedding anniversary.  Chris took the day off of work, and we spent the entire day together.  He went with me to the chiropractic appointment, and we got dinner at a local bar that specializes in fantastic burgers and whiskey.  The meal was free, thanks to a generous friend of mine, who'd given me a substantial gift card.  So we enjoyed that.  Chris also made some rosemary bread for us that day, which was nice because the last loaf didn't survive the meal it was baked for.  He'd made another loaf the day before (Sunday).  We had friends (a younger married couple) over for dinner to celebrate our anniversary.  It was a relatively simple dinner: beef stew, rosemary bread, apple slices, and some macadamia nuts for snacking.  But it seemed to go over well, despite one of our friends being sick.

We also broke out the top layer of the wedding cake, which we had saved according to tradition.  We put it in an airtight container and froze it, keeping it in the chest freezer for the whole year.  I'd promised our friends ice cream if the cake was terrible, but to my delight, it actually had kept quite well.  It wasn't particularly dry, either.  The only major annoyance with the cake was that the frosting on the sides started falling off as it defrosted, but since the frosting with our names and the year was still intact, it was good enough. 

On Thursday last week, I went to see my hair-person for the last time.  It was just a simple haircut this time, which has left me with naturally-colored hair on the sides and blue on the top.  I'm not entirely sure how I feel about it.  But more important, my hair-person is leaving!  I am saddened.  Happy for her, but saddened for me.  She's finished her schooling, and has gotten a Real Job at a salon in Chicago.  Her dream job, in fact, so I can't even be too salty about her disappearing on me.  It sounds like she's going to have proper benefits and good tips and further training, etc. So hopefully she'll do well there.

I'm just sad for me because it's hard to find people that like me and like my quirks and eccentricities, so when I find one, as I did in her, I want to keep them nearby so I can enjoy them.  She's a pretty interesting, somewhat quirky person herself, so we developed a type of friendship.  Hard to quantify.  Anyway, it was suggested that I could drive to Michigan City and take the $6 train into Chicago, and from there navigate the city to get to her salon once she starts work there and I need a haircut.  At least for the first year, her haircut rates will be quite reasonable. 

That seems like a lot of time and effort for a haircut, but I'm considering it just so I can keep in touch with her.  I'm kind of crap at keeping up with people if I don't see them in real life.  It just doesn't occur to me to say hello and ask after them and their family.  It's not that I don't care, I just don't remember in the slew of other things I'm trying to do.  And my lack of scheduled 9-5 job means I do have some flexibility in when I do things.

She graduates next week, which is to say, she clocks out for the last time at the school and then never comes back.  I guess they don't have a graduation ceremony.  She invited me to come, if I have time, etc.  I've already picked up a card, I'm just trying to decide if a balloon and some form of chocolate cake would be a reasonably not-weird thing to do.  I know it's not like a college graduation or anything, but it's lame that they have no ceremony whatsoever.  And I'm unsure about how exactly to quantify the relationship, so balloon, card, and cake might be going overboard.  Maybe if it's a tiny cake?  Except her family's going to be there, so I should probably at least get one large enough for them to share.  Bah.  I'll figure something out.

Back to the hair-care thing... while I figure out what to do about haircuts, she did recommend a relatively new student to me, who could continue my inexpensive haircuts and (relatively) inexpensive dyeing sessions.  I guess she thinks this student is a reasonable enough match to my temperament.  Or... something.  I don't know how one makes those judgements.  I assume it's relatively intuitive, but I was somewhat bemused when my hair-person commented that I was talkative.  I don't really consider myself super talkative, and particularly not when the comparison field is literally hairdressers, who often seem to talk just to talk while they work. 

Finally, I was walking and talking with a friend of mine last week, and she suggested I consider holiday work.  Retail, the post office, etc, really need part time workers right now.  There'd be no benefits, but you do get paid, and she strongly suggested that it's a good way to see how well you do with regular jobs.  I haven't had a normal-person job for like five years, so the concept makes me rather anxious.  But it's not a bad idea, because you know when the holiday time is up, you're going to be done and never have to come back.  So if it's a bad job, you're not stuck there.

It's honestly not a bad idea, and Chris and I could use some extra income.  In addition, LENS has changed my brain a decent amount, to the point that it might be possible to manage a job like that.  Maybe.  My major concern is that I don't necessarily get everything done that I should be doing in a week without a part time job... I'd hate to have to stop doing this blog just to stock shelves or something at a grocery store...

Either way, I think this year is not going to be the year I try it.  I've already signed myself up for 40+ hours of work with the federal government this December, regarding research applications.  Which... I guess in theory is going to pay money.  Just, not, like... tons.  It's something, I guess.  And unfortunately kind of important.  The US government is rather busy funding tons of studies that try to discover what autism is... but not studies about what would improve the lives of people who already have it.  So as much as I am not looking forward to reading grant applications for 40+ hours... the chance to get up in peoples' faces and tell them flat out that I don't care why I'm autistic, and that I want to live better and be happier and have a social life... is kind of invaluable.  And I'm more than verbal enough to do it.

I guess maybe this year, trying to personally enlighten some researchers and other community reviewers is my part time job. 

Monday, November 13, 2017

Reading the Research: Music Therapy and Good Relationships

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 about what makes music therapy more successful for little children on the autism spectrum.  I was curious about this form of therapy, because my understanding of it was basically: "play music for a kid.  Good things happen."  While I like music a lot, I wasn't sure how or why that was better than an iPod with a decent selection.  I was further perplexed that one of the major organizations for autism in my area offers this therapy year-round to over a score of autistic kids.  Naturally, I was incorrect in my understanding of what music therapy is. 

Music therapy is what I personally recognize as a major part of Kindergarten, actually.  Or at least my particular upbringing.  Children don't just listen to music, they are encouraged to play it, using their voices, instruments, or other objects.  This allows for creative expression, physical activity, and reduced anxiety at the bare minimum.  I remember being encouraged to sing and play simple instruments throughout my childhood, but especially in the elementary school years, when basically no one could sing well or hold a beat anyway.

I had all that, but what I didn't have was a dedicated teacher with whom I had rapport.  And that's what this study suggests for an optimal result.  Music therapy already has good results, regardless of whether the teacher and the child develop a relationship.  But it's a better result when the therapist is emotionally and musically attuned to the child. 

Not really surprising to me, honestly.  If a child feels like an outcast or an outsider, or feels like they're  a burden or having a lot of trouble, having an extra person in their life to cheer them on and support them is bound to be beneficial.  That's the premise of the Stephen Ministries, which assigns people in hardship a personal pastoral friend to talk with and be guided by during those hard times.  Frankly, I wish more organizations had the same idea.  Just knowing someone is "on your side" and cares about you can be a major relief.

In addition, music therapy has the added bonus of exercising sensory processing, emotional attunement, cognitive regulation, and it can teach music.  Maybe I'm the only one in my generation who thinks that last one is important these days, as I think it's been shoved out of most school programs at this point in favor of even more academics, and so their precious sports programs won't have to experience budget cuts... But the remaining three are definitely important to brain development and living life, particularly for autistic people and people with intellectual disabilities. 

Friday, November 10, 2017

Book Review: Switched On

Switched On: A Memoir of Brain Change and Emotional Awakening, by John Elder Robison, is a stunningly powerful account of the famed speaker's experience with being a test subject for an experimental therapy for autism.  The therapy is called TMS, or trans-cranial magnetic stimulation.  It is an energy-based therapy, like neurofeedback, but instead of electrodes there's an electromagnetic coil and a lot more energy involved. So naturally I started drawing parallels to my own energy-based therapy, LENS.

That Accursed Nagging Doubt

Why do this?  Well...  Mr. Robison and I share a common trait, which I suspect is probably common amongst the autistic population as a whole.  That is, we indelibly, irrevocably know, from a lifetime of having it drilled into our skulls silently by society's actions and words... that we are second-class people.  Broken, or twisted, or sick, or not quite right, the wording varies based on the person.  Social skills are a meta-skill that almost every job, place, and situation in life requires, and lacking them is an unutterable, unacceptable, intolerable sin.  It makes people draw away from you.  It hinders relationships, stunts personal connections, and places a giant "AVOID" sign on your back. 

This is not right, it is not fair, and it is certainly not acceptable.  Dr. Temple Grandin addresses this mentality with her "Different, Not Less" philosophy.  And while that's a beautiful, shining example of how things should be... it's one thing to mentally accept and earnestly try to live a philosophy, and quite another to believe it down to your bones.  And from Mr. Robison's writings, he was about where I am now when he started this study: rightfully proud of his strengths and accomplishments, but tormented by the nagging doubt that because of his social weaknesses, disabilities, and eccentricities, he was a second-class person. 

That nagging doubt was why Mr. Robison left two successful careers.  The first was in musical engineering, making unique sound and lighting systems for KISS and other bands of the time.  He made the flame-spitting guitars, for example, along with many of the odder sound effects they employed.  But he left because he didn't feel like he was doing well enough, despite being a resounding success.  He went to work at a big toy company, designing innovative circuit boards for the newest toys.  And there, too, he did an excellent job.  But he felt like a fish out of water, unappreciated and disliked, unable to improve his ability to read people and work with them, and so eventually he left that field too.  Both things he excelled at, despite his social difficulties and disabilities.  But the guilt and the doubt undermined him until he couldn't stand it, and left.  You can read all about this in his book "Look me in the Eye," by the way.

I would probably say that that same doubt might be why I've never really succeeded a lot at any one thing.  I have known, since I was pretty little, that I'm different.  I've never really fit in, and that takes a toll on a person.  I have some talent in music, but between my very musically gifted (and slightly judgemental) parents and my anxiety, practicing regularly was quite beyond me, growing up.  And you can't learn an instrument without practicing, so eventually I failed out of that.  I still sing, but not a lot.

I went to college for psychology, where I promptly failed to fit in and was even kicked out of a group project for it.  All the eggheads in the psychology department promptly failed to either notice or make any accommodations it.  And it turns out not even college could make formalized learning fun and accessible to me.  So I chose not to subject myself to graduate school, which would simply have been more money and more suffering.

I'd minored in software development, so I did that instead for a few years, first for the public library and then for a company that used some of the same technology I'd worked with at the library... but I don't love coding, and I'm not a natural-born, intuitive coder... so between that and the lack of social skills as padding for when I didn't succeed, I failed out of that, too.

In theory, I might have succeeded at any of those fields.  In practicality, I just... couldn't.  It was depressing to notice that parallel between Mr. Robison's experience and mine.  With the exception, of course, that Mr. Robison has been a smashing success by objective measures at least three times in his life, whereas I... can pretty much just say I graduated college. Woo...

Other Parallels

I noticed other very familiar thought patterns in reading this book, too.  There's an entire section near the back where he talks about finding out he has prosopagnosia, or face blindness.  I'm not sure how badly you need to score on the tests to qualify, but his experience sounded very similar to mine.  I am horrid at learning and memorizing faces, requiring 5-10 introductions before I really get a person's name and face put together properly unless something really memorable ensues.  Go figure, that is intensely unhelpful for trying to meet people and network.  For kicks and giggles, I took the face blindness test on Test My Brain.  I then proceeded to score at the lowest possible rung in recognizing regular faces in one test, and only slightly better at recognizing famous faces.  So maybe I should add "prosopagnosia" to my list of diagnoses... 

Mr. Robison also described the "realization cringe" where you look back at memories past and realize you've been horrible to someone without knowing it, and only with the benefit of understanding social rules better, or having more social intuition now, does it finally hit you.  The memory then haunts you, a reminder of your failure, forever.  Autism can lend itself to a lot of accidental cruelty.  I'm unsure if I ever personally did this, but one of my friends is fond of relating a story about a young autistic relative, who, upon receiving a birthday present, responded, "Thank you, but this isn't what I wanted."  I wince every time I hear this story, because of course that hurt the gift-giver's feelings, but the autistic kid likely had no idea he wasn't being polite and also helpful. 

Time (and maybe the LENS) has kindly dimmed most of my memories of growing up, but I suspect my parents could likely tell a few choice stories about similar interactions.  And so could my peers, I'm sure.  I have never, as far as I know, lacked empathy, but having empathy and having a situation trigger that empathy are two very different things.  


I spent a lot of time reading this book.  Over a month, in fact.  I'd meant to read it and review it quickly, to have it as part of my buffer for last month.  That... did not happen.  At all.  I spent so much time reading and being overwhelmed by what I was reading, that the book loan actually expired twice before I was able to get this written.

I was so overwhelmed because the way Mr. Robison describes TMS is very similar to how I've experienced LENS , over the last couple years, and even my learning how to interact with people over a decade and a half. And even beyond that, in some ways.  He describes being able to look into peoples' eyes and see their souls (though that ability didn't last), and suddenly being able to recognize how a person was feeling and why.  He started being able to recognize intent and behavioral abuses better, and was able to prune out the nasty people in his customer base at his car repair shop as well as relationships in his life that were destructive. 

In short, he was able to do in a couple years what's taken me most of my adolescence and a good chunk of my adulthood to manage.  If you read the book carefully, you'll notice that it wasn't specifically the TMS that gave him the lasting ability to do that.  The TMS energized his brain and activated brain pathways that gave him those abilities in the short term, but what made them last was the fact that he tried very hard to use them once they were energized, and kept trying to use them.  He compares it to sled tracks.  The more you use that pathway, the more ingrained it becomes.  Effectively, the TMS made it possible for him to learn those skills and abilities.

The LENS, on my end of things, has increased my social skills capabilities.  I'm able to smile at things more, for example, and the smiles are actually believable and more genuine-looking rather than clearly forced even though I'm trying to be genuine.  I'm not as emotionally blocked up, either, which helps in sorting and dealing with issues in my life.  Which isn't to say it's not challenging.  Just that it's progress.  I am thus able to express myself and my emotions better, which is more comforting and relatable to neurotypical people than a stone face and stiff body posture. 

Reading this book and the various side effects and experiences of Mr. Robison and some of the other volunteers for the experiment, I can fairly safely say that it sounds like LENS is a slower, more careful version of TMS.  Not all of the test subjects of Mr. Robison's study had so happy of results, and in truth, because the changes happened to Mr. Robison so quickly, his marriage became strained and finally fell apart.  He tells how he eventually bounced back and all seems more or less well at the present time, but if he'd had more time to process the changes, perhaps he might have found a way to make the marriage work, or at least gotten some help rather than standing by feeling helpless. 

Our brains are very delicate instruments.  I've mentioned how the LENS has sort of built up the circuits in my brain to function better.  If all of that had happened at once, I might well have had a mental breakdown.  This is actually why my LENS-doctor tends to be very careful about how she uses the LENS.  She works with people of all kinds, and has found through years of experience that change is best introduced gradually and carefully, especially to people who already have sensitive systems.

John Elder Robison is a very stable, grounded guy, I feel, from reading this book and some of his other works.  But some of the other participants weren't, as much.  As a rule, I feel like it's not wise to assume stability in a population that's put under so much pressure.  So while TMS is definitely an option for therapy, I'd be more inclined to support LENS as the therapy of the future, particularly if the costs could be reduced.  That said, in my view, almost anything would be preferable to the medication-mill that is our current system of treatment...  TMS and LENS work directly with the brain, which is where the autism, the depression, and the anxiety live, as far as we can tell.  Medication takes a much more indirect route to its results, and the side effects can be brutally awful. 

Read This Book If

You want to live the experience of a lifetime through the eyes of an eloquent, thoughtful, grounded writer.  The changes he experienced in the course of this book are monumental, and possibly a glimpse of the future.  Mr. Robison is a fine writer, easy to understand, yet powerfully descriptive.  He's also a very pro-science man, to the point where I'm honestly not sure why some college hasn't awarded him an honorary degree or three.  I haven't yet found a book of his I didn't like.  Check it out!

Wednesday, November 8, 2017

Legwork and Life, week of 11/8/17

It's a week later, but I'm still off my regular routine.  It's frustrating, but I just can't get back into the proper swing of things.  I keep missing my pills, or not eating breakfast, or not doing my exercise, or missing an important hygiene practice.  This happens every time I travel, to some extent, but it's particularly bad if the travel lasts more than a couple days.  So given the entire month of October...

It's just really hard to give myself a pass for taking at least as long to return to normalcy as the travel itself took, I guess.  It seems so inefficient and so unhelpful, and the longer it takes to get everything back as a habit, the more I suffer in the meantime.  It would be so much better if I just immediately returned to my routines...  But apparently that is not my lot in life.

On a happier note, I did spend a few hours with my grandmother a few days ago.  She'd been feeling down lately due to a close friend passing away, so between that and my travelings, I hadn't seen her for a while.  So it was nice to eat lunch together, then go shopping at Meijer and Aldi.  I'd sort of forgotten Aldi existed, as a grocery store, and so was pleasantly surprised to explore their stock.  We also stopped by a party store, where she picked up some greeting cards and I mused about the frivolity of the various party supplies.  The prices at the store weren't bad, mostly.  You could put together an acceptably decorated room in any of the major colors of the rainbow, rainbow itself, or red/white/blue.  Streamers, wigs, party favors, hats, chocolate coins, makeup, body spray, hair dye... all of it could be found in those colors.  And that was only the stuff near the greeting cards.  Anyway, we had a nice time chatting, and I picked up some relatively humane tilapia filets for dinners-soon.

The last thing of note is that I've been chewing on an encounter I had with a trans woman recently.  While we were visiting CT, we met the girlfriend of a friend of one of Chris' brothers.  We spent a good few hours in proximity during a social event.  She is... singular.  She's had a pretty rough life, which I heard some about.  That was interesting, but the reason I've been chewing on the encounter so hard is that it taught me something rather important about how I instinctively categorize people.

You see, other than her clothes and her pronoun, this girl did not particularly appear or sound "feminine."  She had only discovered/recognized that she was trans less than a year ago, so perhaps that had something to do with it... but a person's gender identity shouldn't be judged by their appearance anyway, kind've the way you shouldn't judge someone's personality by their face.  I mean, people do anyway: celebrities and attractive people are assumed to be good and virtuous people until proven otherwise, and ugly people are presumed to be evil, pathetic, cowardly creatures until proven otherwise.  But it hadn't occurred to me that I might have distinct difficulty referring to someone as "she" if she didn't appear at least somewhat physically female.

But I did have difficulty.  I managed to not screw it up out loud, but it took a lot of purposeful effort, literally every time I referred to her in a sentence, to manage that.  And that bothers me, because it tells me that I still adhere to categorizing people by their appearance.  In an age where gender identity is divorced from biological sex and AIs are becoming more sophisticated (to the point that they may be sentient soon) it's best to have practice referring to someone by a non-intuitive pronoun, particularly if you want to be supportive and accepting of such people.

After all, while many trans people choose to make changes to their bodies and lifestyles and mannerisms in order to better align with their gender, there are plenty of folks that don't fit their chosen gender well because of factors out of their control, or are in transition and so don't look the way they want, or don't feel the need to make those changes in order to be who they want to be.  But no matter what the case, it's common courtesy to use the correct pronoun when addressing someone.  In addition, trans people already have difficult lives, so it bears making the extra effort to be respectful.  (Also, as a Christian, I am called to treat all people, particularly minorities and other marginalized people, with kindness, empathy, and respect.  But I digress.)

I like to think of myself as an ally to the LGBTQIA+ groups, but every now and then something like this just comes along and blindsides me.  Guess I'm not done learning how to do social things and interact with people... 

Monday, November 6, 2017

Reading the Research: The Outcomes of Spanking

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 examines the long term effects of spanking children.  Before I go any further with explaining this study, it's important to note that this study, and this post, define "spanking" carefully.  Spanking, in this context, is "using physical force with the intention of causing a child to experience pain, but not injury, to correct or control the youth's behavior."  In short, spanking as defined here is not simply an excuse to hit or abuse a child, it is specifically only for disciplinary measures, and only wielded carefully and with precision.

So all that said... even if you narrow it down to that careful definition, the end results of spanking a kid are bad.  The study correlates this definition of spanking with illegal drug use, alcoholism, suicidal thoughts, and depression.  Right alongside other forms of physical and emotional abuse, like neglect, whacking the kid with a belt, and routinely insulting or cursing at the kid.  The category for such things is called ACE, which stands for Averse Childhood Experiences.

The researchers suggest, given the results of their study, that spanking be added to this category.  That would, in my opinion, be a step in the right direction.  In the world of special education, in this very state (but not my county, at least), it is legal and acceptable to spank, beat, or otherwise physically abuse a child in the name of discipline.  Some school districts are in court proceedings, fighting against concerned and outraged parents, over this precise subject.

My bias is likely pretty clear from my writing already... but I'd just as soon see spanking be added to the list of things that constitute child abuse.  I am not a parent, and may never be, but I do feel like if you've had to resort to spanking your kid, especially if you have to do so often... you should be seeking out help and trying to figure out why your parenting style isn't working.

You can likely guess why I have strong feelings about the subject.  Well, apart from the philosophical disgust with the concept of child abuse.  I was spanked as a child, a few times.  I had been behaving badly for quite awhile, as I recall, and none of their punishments made them feel I'd gotten the point.  So, despite being pretty decent parents overall, they were at their wits' end.  And that was what they resorted to.  The experiences cowed me (briefly) and humiliated me (much longer term), but considering the fact that I resent those experiences to this day (having forgiven many other, debatably more important failings), I doubt it was a good call on their part.  I would much rather have had them consult a professional like my current doctor, who might've been able to explain why I was misbehaving so badly. (That didn't happen for various reasons, not all of which were my parents' fault.  Raising a kid is brutally hard, requiring a lot of judgement calls and "do your best and hope for the best" decisions. And it's not like they knew I was special needs.  Not to mention their specific circumstantial difficulties, which I won't go into here.)

Mentality-wise, I feel like mostly what the spanking taught me was that I was small, weak, and unable to fight back.  It didn't reinforce the rules they'd set down.  It didn't make me feel better, or even more compliant for a moment longer than it took the shock to wear off.  It deeply humiliated me and made me angry.  It made my parents seem like bullies, just like the kids at school, only unimaginably more powerful.  Hypothetically, if I was normally a problem child, I suspect the shock of being spanked would wear off very fast, leaving only the resentment, fury, and humiliation.  That's a bad recipe, and it suggests to me that special education and even regular education (ahem, Texas and most of the Deep South) would do better without it on the table, tempting frustrated teachers, paraprofessionals, substitutes, etc. toward child abuse.  

Friday, November 3, 2017


I woke up this morning to Chris' work alarm, and then again, about 45 minutes later, disappointed.  It wasn't really an auspicious beginning to my 29th birthday.  As I got up, I tried to decide why that was.  I hadn't gone to bed upset, and I'd slept reasonably well.  Nothing majorly disappointing had occurred overnight or just yet in the morning.

I sifted around through my previous thoughts on the subject: that birthdays are a huge deal when you're little, with no effort on your part, but when you grow up you have to make them a huge deal or they'll slip right by without much notice.  But that didn't seem like enough to trigger this disappointment, since that's how it's been for a decade.  I thought about the fact that this month has been rushed and messy and full of travel, and so I hadn't been able to update my wishlists as much as I'd've liked.  But my wishlists still have things I want on them, so that doesn't seem sufficient.

Finally, I landed on what I assume is the problem: this birthday, I don't have a small pile of presents or envelopes to open alone, as a sort of "good morning, it's your birthday" celebration.  It was my last tribute to the days when birthdays involved a small pile of presents and everyone pointedly caring about you in person, I suppose.  I hadn't realized it was so important to me. So maybe next year if I get presents ahead of time, I'll make sure to save them. 

This lack of envelopes and the occasional present is not because everyone forgot me, though likely a few cards will be late, as they usually are.  It's because we stopped our mail when we went out on the last trip, and nothing has arrived since. Chris thinks they'll just bring it all to us now that they're clear to deliver again, but I recall having to go to the post office and pick it all up every time I've seen that done.  So later today, when I go out for LENS (therapy), I'll stop by the nearest post office and inevitably be told to go visit a different post office because the post system is weird. 

It being the day it is, though, very few people will bat an eye at what I'll be wearing.  I intend to go out in a Tshirt and jeans... but overtop the normal clothes will be my chainmail vest, my black faux-velvet cloak, my black leather bracers, one of my chainmail wrist cuffs, and my chainmail circlet, which has a crystal hanging from it.  It'll be a sight to see, but with it being Halloween, very few people will care. 

In the meantime, it's not like people forgot me.  Actually, the uncle and aunt we visited on our last trip snagged "first birthday present of the year" about 5 days early.  When we gave my uncle a birthday present, they promptly handed me mine, which I opened after some prompting.  Rather thoughtfully of them, it was one of the books I'd reviewed for this blog, and one of the few I'd mentioned wanting to have afterwards.

In addition, my spouse set aside some money for a special experience at the end of our last trip to CT.  The last hotel room we stayed in came with a jacuzzi/hot tub right in the room.  We got there relatively early, got dinner, took showers, and then relaxed in the hot water and jets for like an hour.  I used to love having baths, but now that I have to clean the tub myself, and my skin does this weird caking-on-thing to the sides of the tub, it's not as much fun.  Also, most tubs are too small for me to really relax.  This tub was big, and I didn't have to clean it, so it was pretty nice.  I woke up early the next day to use it one more time before we went back home for the day.

Also, my parents have kindly offered to take me out to dinner at a restaurant I've been wanting to try.  It's an old world British pub, recommended to me by a fellow food-lover friend.  It's across the city and a bit pricey, so Chris and I hadn't made it there yet.  After dinner, Chris and I will go home for a bit to relax, but that won't be the end of the day.  The day won't end until well after midnight, because a friend of mine is being a sweetheart and hosting a movie night.  It's a movie I've been looking forward to seeing, but hadn't had time to do so just yet, so that's exciting.

Finally, it seems like Michigan itself has decided my birthday required special notice, because it is now snowing for the first time this season.  Not hard, thankfully.  Just enough to coat the tops of cars and buildings with white.  Between the fall colors on the trees and the snow-icing, it's kind of pretty.  I'll try to enjoy driving through it on my way to therapy and such today.

It's probably odd to have therapy on your birthday, but I don't really mind.  The therapy is kind of part of the reason I can enjoy parts of my life now, so getting my brain bolstered for the movie and the dinner out in a new place and such seems like a good plan.  I'm trying not to do things I don't like today, just to see what things I end up avoiding and what things I end up doing.  Usually I don't differentiate because stuff has to get done, but this will probably be an instructive experiment. 

Wednesday, November 1, 2017

Legwork and Life, week of 11/1/17

We made it home safely!  Whew.  I like to think I'm pretty good at handling change, travel, and unexpected difficulties, but being gone for 2-3 weeks around October has just entirely messed me up.  Both trips were well worth their time: the first to go help my parents move, and the second to attend a wedding and see family.  Both trips went pretty well.  I guess I just feel very discombobulated and out of whack.  If I'm lucky, that will wear off before Christmas travel occurs...

Yesterday was my birthday.  Friday's entry will cover birthday events, but it basically went pretty well.  My immediate family remembered, as did some of my friends.  I kind of dropped the ball on updating my wish list this year, to the point of adding a couple things to the list the day before my birthday, also known as "way too late for people to actually see."  I blame all the travel and running about like a crazy person.

Our trip, in brief, went: drive partway, attend wedding, visit with Chris' older brother and his wife, visit with Chris' parents (which included a trip the Mystic Aquarium), visit the Boston Museum of Science, visit with friends, visit with one of my uncles and aunts, drive partway home, visit with one more set of friends, and finally go home. 

We took both traveling parts in two steps, with plenty of time to stretch our legs.  It's a bit more sane that way, but annoyingly also more expensive by a large margin that way.  Less expensive on the sanity, more on the bank account.  A frustrating tradeoff.  Still, it was nice to not have to drive 14 hours in a day, and have some quiet time before and after the trip.

Chris' brother and sister-in-law were gracious hosts and drove us around parts of the state, one stop of which was a small dairy farm/chocolate shop.  They produce single cow origin chocolates, and apparently try to pair the particular cow's milk with flavors that suit it.  I'm not sure how much I buy that there are such distinct differences between the milks of different cows, but the chocolate itself was definitely good quality. 

After that, we visited with Chris' parents, and went to an aquarium in Mystic, CT, which plays host to a pair of beluga whales along with sea lions, jellyfish, sharks, etc.  It was an interesting experience.  The whales seemed to get a kick out of messing with their visitors, just a bit.  They'd zoom by, right next to the glass of the tank, prompting astonishment and attention from their admirers.  I found the sea lion show a little overdone and gimmicky, but I assume they were more gearing it towards children than slightly grumpy, TV-avoiding 20-somethings.  And of course they had a ray petting tank and various other aquatic critters.  So that was fun.

The next day Chris and I visited the Boston Science Museum alone.  I don't think I've ever seen such an extensive science museum in my life.  Highlights included the Planetarium, where we caught a show about exoplanets (planets not in our solar system), the Lightning Show (very loud but very cool), and the temporary exhibit/art installment about mental illness.  I had a bit of a soft spot regarding the last one, considering.  (Autism is not classified as mental illness, but depression and anxiety are.)  The most interesting piece to me was the set of 99 pictures of people, 33 of which have bipolar disorder, 33 of which have schizophrenia, and 33 of which care about someone with mental illness.  The pictures were not labeled, so it was just an entire wallful of faces, many skin tones, many walks of life, many expressions.  All people.

After that we visited with two of our friends we rarely see these days,  which was pretty much just an evening of chatting, watching movies and Youtube videos, and eating pizza.  It was a nice break from all the driving, because they were right in the area.  But the next day was more driving, because we went up to Boston again to see my uncle and aunt.  It was actually my uncle's birthday, so we brought him a present which he seemed to like.  He showed us his glassworking shop, which had a lot of really pretty colors of glass. I was feeling a bit out of sorts, so Chris got a better explanation of the place than I did.  But we all ended up fiddling with an auto-knitting machine my aunt has.  And they took us out for dinner at a nice little Italian place.  I managed to forget my leftovers at their house, though, which I regret.  The food was very good.

Then it was back to CT, and time to head home.  Before we left, I picked up a new preoccupation/toy.  We hit the toy section of a store, to buy a last minute present for a friend, and while we were there, I grabbed a Rubik's Cube.

One of these suckers, for the unfamiliar.
Like blowing bubbles in gum and being able to whistle loudly through my fingers, doing the Rubik's Cube was one of those tricks I always kind of wanted to learn.  I learned how to blow bubbles in gum at age 16, while bored out of my mind at a baseball game.  Whistling loudly through my fingers had to wait until I was 20 or so, and bored out of my mind at a summer job.  But I'd never quite gotten a Rubik's cube in my hands, or found anyone who really liked the subject.

So about a year ago, I met a teenager who really liked them, and was really really good at them.  I was going to Bible study with his mother at the time, and she "lent" him to me to help fold origami for my wedding.  So while I was there, he showed me some of his collection and how good he was with them.  I was summarily impressed, and somewhat envious.  He had a couple different ones like the picture above, but he also had larger ones and oddly-shaped ones, which was pretty cool.  Anyway, he wasn't able to teach me how to do the cube, but chatting with him did remind me that I'd wanted to learn.  So finally I picked one up while Chris and I were out in CT and in the toy section of a store anyway.

There are roughly six steps to the beginner's method of solving the Rubik's Cube.  I have, that this point, fully mastered and memorized four of those steps and am working on step 5.  I tend to do these things one step at a time, over and over until I'm sure I've memorized it.  At this point I've had the cube for less than a week, though, so I'm sure I'll get there sooner or later.  The traveling and birthday-ing and getting back into normal schedule-ing has slowed me down, I guess.

In other news, last year I signed up to be a research reviewer for the Autism Research Program (ARP) of the US government.  Apparently this year they're actually going to assign me to some research to review, so my December is going to be a bit more busy than it would be normally.  I'll be spending about 40 hours across the month reading, commenting on, and scoring applications for grants.  This will culminate in a trip to nearish Washington DC, where I'll meet the other reviewers and discuss the applications and their effects.  It's the US government, so it's going to be a 3 day thing, no time for tourism or sightseeing.  But that's probably just as well, because I have no patriotic impulses left, nor any goodwill for pretty much any politician in DC.

Also related to autism research, today I get to participate in a study regarding autistic adults and exercise/sports/physical activities.  I got the FYI about it from my spouse, who read it on John Elder Robison's Facebook page.  They want to study how autistic adults have experienced physical activity, health, and exercise across our lives, and want to interview interested adults by phone, Facetime, or Skype.  Compensation for your time is a $10 gift card, their appreciation, and the possibility of improving the lives of autistic people everywhere.  If you are an autistic adult, or know an autistic adult who could give feedback regarding this subject, please contact Dr. Andrew Colombo-Dougovito at, or Dr. Josephine Blagrave at  You can also call or text them at 530-518-2495 (Josephine) or 940-656-2069 (Andrew).