Legwork and Life, week of 5/30/17

Meet my new tablet, safely tucked into its protective casing.  That casing at least triples the width of the tablet, and gives it a number of easily-grippable surfaces as well as a decidedly non-slip surface.  It's made of food-grade silicon, which is apparently both durable and extremely washable.  I have yet to test it thoroughly, as I've not yet dropped this tablet, but I'm sure it'll happen any day now.  The brand is BobjGear, if you're interested in one for your own smart devices or one for your kid's.

I am, at this point, adjusting to using this new tablet.  It has far less screen space than my old tablet, but that is also likely why it was so much cheaper.  It's different enough in interface that it took me this long to get used to it, but not so different than it's been an ordeal to figure it out.  And naturally, the wonders of technology have lent themselves to making it easier.  Rather than having to make a list of the apps I'd had on my old tablet, and praying that they'd still be available on this new one, Google simply tracks all that information and made it available to me on any device I sign into.  I find that both highly useful and more than a little unsettling.

The convenience is fortunate at this time, though, because I'm struggling with being the chair of a committee for the Self Advocates of Michigan.  So far, the position has mostly involved what feels like herding cats.  Schedules just aren't lining up and I end up feeling rather unappreciated and frustrated.  I put in my best efforts and all I seem to get is... apathy, I guess?  So far, the committee of four feels like a committee of two, and the other person is also on another committee and his life went into high gear lately, which makes him not so available.  In the meantime, I have an additional website to keep updated and no help is forthcoming.  I'm really tempted to just tell the rest of the committee that I made the site, it's their job to keep it running...  but I suspect that would be irresponsible. 


At least this last weekend has been fairly quiet.  It was a long weekend, due to Memorial Day.  It was more of a schedule change for Chris than it was for me, I guess, but it was nice to sleep in a bit with him.  We did go out hunting Pokemon on Saturday a bit as well, bagging four rare Pokemon and some other spare, not-so-rare things.  We also visited one of my friends, who has just had her firstborn more than two weeks early.  The baby shower is not 'til this next weekend, but we brought a Costco-sized box of diapers along with ourselves.  It seemed like the thing to do, since she's going to need a lot of those... 

My Mode of Thinking

Not Just Words

More than ten years ago, Dr. Temple Grandin wrote a book called Thinking in Pictures, explaining in a series of essays how she and other people on the autism spectrum do not think in words, necessarily, but in pictures.  If you said the word "dog" to Dr. Grandin, her thoughts would show her pictures of specific dogs she's known in her life, or seen in pictures.  Whereas the "standard" understanding of how one would process the word "dog" would be the concept of a four footed, furry canine, without a picture.  Most people, if they had a picture included, would have a composite image of various dogs, or a single specimen that represents the entire concept.

In short, most "normal" people are understood to think in words, with pictures as a sort of footnote.  Dr. Grandin, instead, visualizes everything in pictures and then has to translate to words.  For an idea of how complicated that might be, try imagining how to convey, in pictures, everything that happens to you in couple hours of your work day, including any interruptions that might occur.

Our entire school system, from about middle school through grad school, is geared towards people that think in words, and visual thinkers are expected to understand and use vast swaths of text.  Failure to do so may land you a learning disability diagnosis and the scorn of your peers.  Seems a bit unfair, when visually minded people are our very best at doing mechanical work, construction, architecture, and some kinds of engineering.  Think about it: if you can design and build things in your head, without expending any materials, of course you're going to have an edge over someone who has to use materials or a visualization program to try their ideas.  Dr. Grandin would build cattle-processing equipment and other things in her head before even touching drafting equipment or CAD software.  Yet we usually relegate such gifted people to minimum wage service jobs.

More than Pictures

All of this is to note that there are already examples of non-word oriented thinking.  When I first read Dr. Grandin's book, Thinking in Pictures, I wondered if she wasn't describing me as well as herself.  But it wasn't a perfect match.  I have the ability to consider things visually, but it is not how I think primarily.  Nor is words.  Those things puzzled me for years, since I'd not heard of anything other than thinking in words before Dr. Grandin's work, and then nothing beyond "words or pictures."  

You see, I am verbal and can express myself in words, and do, often, as you can see from this blog.  I grew up reading lots of books, and in fact learned most of my vocabulary and grammar that way.  (Perhaps that clues you into how I really think?  If not, keep reading...)  But I also like charts and pictures, despite my test-verified inability to process visual detail in a timely manner.  (I scored in the lowest 5% of people in a test to measure my ability to process and react to visual stimuli.)  I can't construct, say, a whole cattle-processing complex in my head, but I can visually judge momentum and speed of objects.  So I was very good at dodging people in school hallways, and that translates to being pretty good at estimating whether it's safe to cross the street, or if I can merge into any given space on the road.  

But I don't work purely visually at all.  In fact, one of the ways I judge my moods is by checking what song is presently playing in my head.  My brain, you see, acts like an mp3 player.  It's always on, always playing something when I'm conscious.  Sometimes the music is as simple as a snippet of a song I heard earlier, sometimes as complicated as a whole orchestral piece with all the instruments.  The only caveat is that I have to know the music for my brain to play it.  I can't invent music and play it, I can only repeat music I've already heard.  

I have music that I recognize as "I'm feeling depressed," and music that specifically plays when I emotionally feel like I've failed.  There's an entire playlist that's come to mean, "Things are utterly awful right now, but it's going to be okay in the end, really."  I have music that signifies specific people, and music that represents whole philosophical concepts.  I don't really control these designations, and I cannot change them at will.  They simply come into being, and I "hear" the songs in sufficient numbers of contexts that I finally recognize them for what they are.  

I also have a predictive ability that I've honed over the years.  Between my education in psychology and my observations of people and systems, I can usually get around in situations in life without too much anxiety.  For example, most shops have service staff.  If I can't find something I want to buy, but I'm pretty sure they would have it, I can find someone and ask them.  This holds true for clothes shops, grocery stores, spice shops, and hardware stores.  

This ability also extends to people, to some extent, and it's one of the reasons I don't seem as autistic as I am.  I developed social thinking, of course, but in an effort to make my life less unpredictable and anxiety-provoking, I also learned to generalize beyond "in this situation, I should do this," rules.  Because different people expect different things out of others, it's not the best plan to have a "one size fits all" rule for a situation.  

If I have a conflict with Chris, my spouse, I know that I can bring it to him directly, plainly, and expect to have a reasonable discussion about it.  However, if I have a conflict with a coworker, I can't safely expect that tactic to have similar results.  Unfortunately, many neurotypical people don't like the direct and clear approach to conflict.  It's too confrontational, or seems accusatory, or something.  So instead I have to pick my words with great care, get input from a third party as to how best to approach the problem, and essentially bend over backwards to avoid upsetting the person I'm upset with.  You can see I'm a bit biased here, but hopefully my point is still intelligible despite that.  

Finally, I have the ability to memorize flavors.  This is rather helpful when cooking, as it makes me able to mix flavors in my head.  This is, I suppose, somewhat similar to Dr. Grandin constructing equipment and facilities in her head, but much simpler and less visual.  A couple weeks ago I marinated chicken breasts in pesto and honey, and served it over brown rice and quinoa.  I don't think I've ever had those flavors in combination, but I figured it would work reasonably well, given the results when I mixed them in my head.  They're not flavors I'd normally put together, but it seemed to me that they complemented each other.  I served it; Chris and I both liked it. 

So how do all these things, words, pictures, music, prediction, and flavors work together?  What do they have in common?  In the end, how is it that I think?  Well...

A Third Kind of Thinking: Patterns

It seems to me that what all these things have in common is that they contain patterns.  Words come in sentences, and adhere to specific rules for spelling and grammar.  I learned them by osmosis, mostly, from reading hundreds of books and absorbing the spellings and grammar that made it past the editors in publishing companies.  (I also learned them in school, but really, I wasn't that great of a student; if I hadn't had an edge, I definitely wouldn't have qualified for advanced classes.)

Pictures and visuals, at least as I use them, also come in patterns.  Graphs adhere to rules, which is how you read them.  The momentum and speed of a car or a person is predictable by a number of circumstances, which I used to great effect in school and to this day.  I can, to a limited extent, do simple visual calculations.  If I need to move an object in space, but can't use my hands for some reason, I may see a flash of a tool that I could use to move that object.  A simple example would be needing to pry out a nail.  If I had no hammer, I might see the flash of my multitool, which has a tool that could be (mis)used to pry a nail out, and how I might use the multitool attachment to pry out that nail.  Effectively, this pattern translates to "multitool ~= hammer ?"

Music is rife with patterns.  Especially pop music, which tends to be simpler than the grandly complicated orchestral and symphonic pieces one finds in classical music.  One of the staples of many pop songs is a simple, but catchy, chorus.  This is then surrounded with verses that convey what the song is actually about, but the chorus repeats between each one, providing a predictable and attention-grabbing anchor for the rest of the song.  Because the chorus is so simple, it's easy to memorize, which then allows people to focus on the verses.  

Pop music is perhaps the simplest example, but all music, even the complex works of Bach, Beethoven, Brahms, and Mozart, has patterns built into it.  Such patterns are sometimes called "themes," and they are, to my understanding, one of the few ways to identify an unknown piece of classic music.  My mother, who has her Masters in music, has a book specifically to help identify music by its theme.  I remember it on her bookshelves in her office, a curious mix of text and short musical notations.

My social thinking and my understanding of how to deal with situations also follow patterns.  Often decision trees, specifically.  Many situations can be generalized.  How you act in a store, for example, often follows near-identical rules regardless of what store you're in.  Particularly the way I shop, which is "like a man", as I understand it.  But people stress me out and exhaust me, so I'm okay with that designation as long as it helps people relate to me.

The general decision flow for shopping is as follows:

1. Can I easily locate the item I came for?  If yes, locate and proceed.  If no, look around a bit longer before asking for help, because that's part of what store employees are for.  Once found, proceed.  
2. Repeat as needed for entire shopping list, ideally proceeding from the back of the store to the front.
3. Locate place to pay for items and pay.  
4. Leave ASAP.

Finally, flavors are sufficiently memorable to me that eventually I store them somehow, and can take them out as concepts and put them together.  Probably somewhat like people match colors and outfits styles, some things just taste better together.  I can sort of mix and match flavors in my mind, without having to necessarily try it in real life.  For instance, chicken and pesto are pretty common flavors to put together.  I figured out a few weeks back that honey is a decent addition to that mix.  Not too much, just enough to give it a sweet balance to the savory of the pesto.  Recently I tried the same thing again, but with a bit of sriracha sauce as well.  It added a minimal burn and some spice to the balanced sweet and savory, which ended up turning out rather well according to Chris and myself.

Make sense?  What modes do you think in?  Words?  Pictures?  Patterns?  Something else entirely? 

Legwork and Life, week of 5/23/17

Hooray, I survived!  This last week wasn't scheduled to be busy or a struggle, but it was really hard for some reason.  Possibly high stress levels and "too many tabs open" in my brain?  I haven't been failing at my supplements, so it's presumably not that...

I dunno.  I hate guessing games, like I hate most needless complications in life.  But there's a reason several of the books on autism like to refer to parents as "detectives."  It's because that's what they often become, trying to figure out why their kid suddenly stopped improving, trying to figure out why their kid is struggling, trying to figure out what therapies work.  I kind of envy those kids a bit, since being both struggler and detective is, if you ask me, even worse an experience than just having to be a detective.

The tradeoff, of course, is that I am actually in my own head, and don't have only behavior and other external data points to work with.  Those are still important, but being able to know if the person knows why they're upset is probably pretty valuable.  I don't know personally, I'd have to ask a parent.

Anyway, I am finally managing to get some of the stress off my shoulders, because I'm finally managing to kill a couple projects and get up to speed on a couple more.  One of the major stressors was a website for the self advocacy group I help direct.  I'm afraid it's not very impressive at present, and doesn't even have its own domains yet, but you can find it here.  The hope is to update it a couple times a week, and my personal hope is that I won't be the one doing that, because there are two other people on the PR committee that haven't done all that much for getting either this or the Facebook going, and they have volunteered to find and add things to these sites.

Beyond my personal stressors, there were a few pleasant social encounters this week.  Chris and I got to see my grandma for a nice dinner.  I'm afraid I was a bit of a grumpy-guts, as I was still worn quite thin from the week and the weekend before it, but fortunately she didn't seem to mind too much.  We also had a movie + meal deal with a married pair of our friends, which has pleasantly become a new pattern in our lives.  They are both relatively busy people, so it's not easy to find times to hang out, but fortunately they love movies, so we can plan around whatever looks most interesting.

The latest movie we saw was Guardians of the Galaxy 2, and it has gotten me an earworm.  One of the major songs in the movie is called "The Chain" by Fleetwood Mac.  I was already familiar with it, and kind of liked it, but the movie used it in key points, so now it's quite stuck in my head.  I don't hate that fact yet, so I'll probably hear it for a couple more days before getting completely, utterly sick of it and overriding it with something else. 

So those things were fun.  But I did spend most of the week miserable, and the crowning moment of awful was actually yesterday morning, when my support tablet broke (again).  This is the third break in two years.  This brand and model of tablet is supposed to be relatively durable, but apparently either I'm super-klutzy or I got a defective one.  Either way, not fun times.  The last time this happened, I wrote an entry about why it was so awful to lose my tablet.

The circumstances here are a bit different, fortunately.  At this point, the phone plan that Chris and I have will allow multiple tablets for a small pittance per month, so we bought a cheapo tablet and added it to our plan.  I'll make do with that for awhile, until we can afford something a bit more functional.  In the meantime, a "child safe" case and an extra thick screen cover will be arriving by mail in a couple days, lest my clumsiness destroy this tablet, too. 

Book Review: Beyond Rain Man

Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum, by Anne K. Ross.

I should probably watch the movie referenced by this book's title, but given how poorly it describes autism and Asperger's, I've kind of avoided it out of resentment.  That's probably foolish of me, since even an inaccurate portrayal served to publicize the diagnosis. 

Anyway, in actual regards to this book, it's more or less what it says on the tin: the story of a mother raising her autistic son.  Unlike many of these accounts, this particular account is honest and forthright in a manner I can only describe as "brutal."  The author and her son struggled mightily with the family dynamic and behavior, and if you read this book, you will understand that struggle quite well.  The author does not sugar coat her descriptions of herself, intent on showing you how she made her decisions, why, and what worked and what didn't.  Such brutal honesty is very unusual in our culture, and not entirely pleasant to read in this case, since raising a child is a great, complicated affair with many ups and downs. 

Another major feature of this book is its organization.  There are subject-related chapters, and the book does sort of progress from birth to college age, but in truth, I would call the organization more "stream of consciousness" than I would anything else.  She makes efforts to keep you cognizant of where you are in the timeline, but skips back and forth between ages.  I may just be very bad at those kinds of jumps, but I found myself confused and lost more than once.  I don't particularly have a good solution to that, since trying to shoehorn everything that happened at age 10, age 12, age 15, etc, gets to be very stilted and invites a different kind of disorganization. 

Something that caught my attention was a section I can no longer locate in the book, where the author insists she isn't on the autism spectrum for various reasons, not the least of which is that she craves change in life sometimes and loves people.  I found her reasons somewhat flawed, and suspect that while she might not qualify for a diagnosis (since she seems to be running her life okay, thus no impairment to qualify), she is still on the autism spectrum.  Liking people and requiring change may not be entirely normal for the autism spectrum, but they aren't unheard of either.  Also, her most prominent example to compare from is her son, and autism can affect women differently than men.  There's an entire Reddit subforum devoted to that, and while I haven't yet done a ton of reading on the subject, I wouldn't be surprised if the author has sufficient numbers of traits to qualify for at least Honorary Autistic. 

The last thing I wanted to point out was a list of notes the author took from a useful lecture she attended on Asperger's.  If you have the same book I do here, it starts on page 222 and spills onto the next page.  There were many useful things, but three in specific I wanted to point out. 

"For a person with Asperger's, the overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others." 

This is often true.  This is definitely true with me.  I have learned to consider other peoples' social and emotional needs to also be problems, and therefore I try to take care to satisfy those things in addition to solving whatever other problems may be in evidence.  It's hard to put yourself in someone else's place, so I do a lot of thinking and data collection on a regular basis when those things are involved.

"People with Asperger's must be taught that 'neurotypicals' need to be told they're loved and need to be hugged."

I don't recall having trouble with this, but Temple Grandin did, the author's son here did, and it's not an uncommon issue in various "my life with autism" books I've read.  Between oversensitivity in skin and simply not viewing hugs as a comforting/intimate thing, it's not necessarily natural for us to give and receive hugs or repeat over and over that we love someone.  Teach this. 

"Emotions often flood people with Asperger's, sort of like a panic attack, so they may overreact to negative experiences." 

I think I spent most of my teenage years angry and miserable, and didn't have much in the way of temper tantrums, but I'm getting some unwanted experience with it now.  Why now, I have no idea.  Anyway, it really is like everything in your world fades out except the one thing that's making you angry/frustrated/upset.  Vastly unpleasant.  I'm working on dealing with that in ways that aren't destructive or self-destructive, but it's very hard. 

Read This Book If

You want a really honest narrative about raising an autistic son.  If you have a background in health care or psychology, the author can also show her you pitfalls so you can avoid them yourself.  If you're a parent, I suspect you'll see some of yourself and your child in these pages, and you'll hopefully find useful the tips and tricks that the author finally puts forth as "what works." 

Legwork and Life, week of 5/16/17

That was a certainly a weekend.  Kind've didn't stop until now, and unfortunately now I can't just lie around because I have lots of work piled up...

Friday/Self Advocates

So in my work as part of the public relations committee for Self Advocates of Michigan, I've been running the meetings for that particular committee and designing a website and such.  There was one of those meetings earlier last week, and then a full board meeting in Lansing on Friday.  This was exhausting, but unfortunately it also meant I was driving to Lansing early in the morning to sit through an hours-long meeting, only to drive home to get on a plane and travel even more.  The meetings in Lansing tend to get stuff done, but they're brutally exhausting and I was having a really bad sound sensitivity day.  I figured this out after they tried to use a crappy microphone/speaker combo and it kept making horrible static sounds and that high pitched shriek that accompanies feedback overloads... I wasn't supposed to spend lunch alone at that meeting, but I did it anyway, with my noise-canceling earphones in, because I might have said things I shouldn't otherwise.

It's absolutely astonishing how exhausting those meetings are, really.  I prepare myself very well, laying out beforehand everything I'll need for the day so I can just grab it and go in the morning...  And it's only an hour's drive, usually.  (I'd prefer to stay there the night and be ready in the morning, but the state won't pay for a hotel room if you're less than 100 miles from the destination... which means no hotel room for me.)

After I drove back to Lansing, it was time to hurriedly pack and get off to the airport, so we could attend Funeral: Electric Boogaloo.  (For the very confused, this was the second round of a funeral for Chris', and now my, grandmother.  She actually died mid-January, but her children's schedules didn't line up very well over the months, so they had a funeral earlier, and then a memorial service later in the year so the ashes could be interred with her husband's ashes.)

Saturday and Sunday

One of Chris' brothers had kindly volunteered to host us and help us get from the place to place, as he and his wife live close to the airport, so we stayed with them post-flight and drove up the next morning (Saturday).  I got to spend time with my parents for a bit, mostly my mother.  Since my parents are moving soon, they've been agitating for me to sort my various belongings.  Which is fair, it's not like they want to move all my stuff into their new (much smaller) home.  It's no small endeavor to get down there, though, so I made the best of the few hours I had and cleared out most of my closet and some boxes in the basement.

Saturday also involved a trip to the local comic shop and some time with Chris' family, but much of it felt rushed and I didn't really enjoy that much.  We slept at Chris' parents' that evening, and then attended church (on Sunday) before going off to the Boston area to attend the memorial service and burial.  The weather was unpleasantly rainy, but we fortunately didn't have a full Nor'easter, which in those parts is a really nasty storm.  Apparently that was what was the weather prediction was calling for, but we lucked out.  Due to the rain, though, the service was held inside an old chapel, which was all finely carved stonework and stained glass.  Unfortunately, the inside of the beautiful place was musty and sickly-sweet, and I, Chris, and my mother had to sit near the door so we could run out for fresh air without making a fuss.  Fortunately, none of us needed to do that. 

I'm not really sure what precisely we were reacting to.  My mother insists mold must be involved, but I couldn't pick out anything in particular that was offensive.  But there was definitely something.  Chris developed a headache, my mother's anxiety level rose the longer she was in there, and my head fogged up within 15 minutes, getting lighter-headed the longer we stayed.  I'm not sure about Chris' headache, but my mother recovered within minutes of leaving the chapel.  Personally, I was muddled for at least 15 minutes afterwards.

Post-memorial service, one of Chris' aunts. who lives minutes away, hosted a lovely reception at her home.  While parties aren't my natural environment, I did amuse myself by observing the "fancy food" and chatting with some of the relatives I knew.  I'm afraid I didn't really try to be a social butterfly and catch up with everyone I knew there...  I spent much of the trip exhausted and just trying to keep my anxiety and lack of natural social graces in check.  Fortunately, Chris' family is mostly pretty good about not being offended by stuff like that.

Monday

After the party, Chris' brother once again kindly hosted us and spend some time with us, with the plan being to relax the next day and see a movie before bringing us to the airport.  Unfortunately, I had managed to lose my wallet and some books I'd bought, and Chris his favorite jacket.  So instead of spending the next morning relaxing, we spent the morning going back to find those lost items.  Chris' mother found my wallet before we got there, though, and Chris' brother's wife managed the spot the jacket, so it was only really the books that we had to locate.  And those hadn't gone far.

We did still manage to see the movie, though.  We had decided on Guardians of the Galaxy 2, which turned out to be pretty decent.  It maybe wasn't quite as balanced as the first, and it absolutely refused to take itself seriously the entire way through, even though there were parts that probably should've been taken seriously.  In the end, though, it was an enjoyable watch and I'd still probably recommend it.

Then it was back to the airport, where security managed to turn Chris' laptop from "partially destroyed" to "mostly destroyed," and Chris had to go back through security to deal with that.  Wasn't really a nice way to start the travel back, and my anxiety and sound sensitivity only got worse as the evening wore on.  The first flight included someone popping bubblegum right in my ear for the entire trip (and a baby a few rows up).  I can't imagine how one could possibly tolerate stale bubble gum for 2 hours straight, but this lady managed it...  Kind of wanted to strangle her, but settled with wearing my noise-canceling earphones the entire flight.  It only helped a little bit, probably should have told her to knock off popping the dratted stuff.

I spent the layover in Detroit pretty miserable, with my earphones in and at max noise-canceling, which was too bad because Detroit's airport is actually pretty nice.  Very spacious, high ceilings, and lots of gates.  They also have a tram that goes from one end of the terminal to the other, stopping only once in the middle.  I was bemused by that until I realized that that concourse literally has 80 gates, and I think there's at least one more concourse.  Maybe two.  I didn't go exploring, because, as I mentioned, miserable.

The second flight was much shorter: a half hour flight for what would be a 2.5 hour drive across the state.  It had another crying baby in it, but at that point I was so miserable I didn't even care.  I think I'd stopped looking at people's faces while I was talking to them by midway through the first flight, which I guess I recognize now as a sign I'm doing poorly.  It's an energy-saving technique, because faces are complicated and full of information.  For brief, polite social interactions, I don't badly need the information the face conveys, so I just stop looking.  It's not really a conscious decision, but I do recognize I'm being impolite and that upsets me...

We got home after midnight.  I unpacked most of my stuff because I knew I wouldn't want to do it this morning, and after a few chore-type things, we both crashed.  I have a lot to catch up on this morning...  Things like making a website go live, scrambling to finish a Friday entry and start another, etc.

Lastly, welcome to the world, Annika.  (My sister-in-law just had her second child, which means I now have a nephew and a niece.  Oh boy.  My grace period for being an aunt is running out for Peter, too...  He'll start storing memories like an adult does soon, which means I'd best figure out how to be an aunt properly.) 

Book Review: Autism Heroes

Autism Heroes: Portraits of Families Meeting the Challenge by Barbara Firestone, PhD, with photography by Joe Buissink.

I'm taking a brief break from the very text-heavy material that so often accompanies books regarding autism.  While this book is not, by any stretch of the imagination, a picture book, it is definitely more photo-heavy than any other book I've ever seen on the subject.  The idea of this book is to capture the stories and pictures of families affected by the autism spectrum. 

In that goal, the author did admirably well.  Many parts of the spectrum are represented, from autistic people who will probably never blend well into society to those that may lead a near-normal life.  Perhaps more impressive to me was the fact that the author managed to have representatives of every racial minority in the US.  Part of that, I would guess, is due to their location.  California is a very densely populated state, so with more people in the area, there would be more chances at meeting a family in any given category and background. 

Still, I have no doubts that this book could easily have been the same as many "our stories" books, and been full of white people. It still would have sold plenty of copies.  So I really have to cheer for this author, because this kind of diversity of ethnicity and socio-economic background does not happen on accident, and we need more conscientiousness like this.  We also need more publicity for the stories of minority families, and this book is exactly that.


The textual stories of the book, accompanied by the pictures, served to convey pretty well where the parents were at, mentally and emotionally.  As an autistic person, I found myself occasionally peeved by their misunderstandings and some of the coping strategies they've used to manage dealing with the stress of having an autistic child.  But it's not like I have children of my own, so I can't fault them too much.  All I can do is try to educate people, gently, that I am not diseased, that it is no one's fault that I am this way, that I am not a hopeless burden, that my life is not over since I'm autistic...  You can hopefully see why I get tired of this sometimes.

I get prevented from snapping at parents like some of the ones featured here because they usually mean well and are trying their best to help their kids and themselves, but it's hard not to develop a kneejerk eyeroll reaction when I come across the same stuff over and over, particularly when it's dehumanizing. 

My annoyance aside, these folks are providing positive, hopeful stories, and that's a badly needed thing for parents who've just received their child's diagnosis, or have been struggling to find the right services, help, and resources for their child. 

I guess I just wish there had been at least one entry that focused less on the parents and more on the person with autism.  For a book titled Autism Heroes to be only limited to the families of those people on the autism spectrum, it seems...  well, somewhat dismissive of us.  I think you'd be hard pressed to find someone (other than Temple herself, perhaps) who wouldn't call Dr. Grandin a hero of autism.  And John Elder Robison.  And many, many other autism self-advocates.  Do they/we not count?  Do the professionals that really go out of their way to help us not count, too?

Given the tone of the book, I would guess that if asked, the author would say that self-advocates and professionals aren't really in the scope of the book.  The book is, following the title, strictly about families meeting the challenges of autism.  And I do understand that.  It's just... it's a far too common phenomenon in autism to focus very heavily on the children with autism, and forget that we grow up and become adults.  And we don't stay young, either, we age at just the same rate you do.  (Or faster, really, giving the effects of stress on the body...)  Yet no one likes to pay attention to that fact, or showcase us and our lives.  Or listen to us when we try to talk about it.

That's about my only complaint, I guess.  That in all the diversity and rich color this book portrays (irony somewhat implied, given all the pictures are in black-and-white), it seems to forget that it's not just families that are heroes of autism.  They wouldn't succeed without us also trying our best.  Heck, this book wouldn't exist without us.  And it's not just autistic children, but adults of all ages. 

Read This Book If

You're a parent in need of hope and would like a good success story or two.  I have no doubts that this book will be as helpful to a parent of a newly diagnosed child as it would be to a struggling parent still looking for services to match their kid's needs. 

Legwork and Life, week of 5/9/17

It must be one of those days, I've been mentally making crab pincers all week.  If you can do the Star Trek Vulcan "live long and prosper" gesture, but then snap those fingers together and apart like crab pincers, you get the general idea.  That's my "I'm crabby" gesture.

I feel incredibly overwhelmed with projects.  My desk has the reminders for five "things-to-do"/projects, and there's at least a couple more lurking around the apartment, never mind the ones that are only on my computer.  I want to be supportive of the various projects and people and be responsible with my time and such, but I think if this keeps up, I might go batty.   I shouldn't be hearing my own heartbeat and having to pointedly take deep breaths to lifehack my own nervous system.

On a happier note, my back pain does appear to be over, thanks to some helpful tips from friends.  I got multiple recommendations to use a memory foam mattress topper, which I didn't want to resort to since my bed's firmness is adjustable.  So I simply made the bed softer, and that seems to have fixed the problem.  Haven't had back pain in the morning since doing that. 

Chris' birthday celebration ended up making for a long day, but the celebration bit was good, so I'll call that a success.  His phone has been on the fritz for months, shutting itself off and being a pain, and he's had it for more than four years.  So we finally sprung for a new one.  Chris took his time picking through the various offerings at the store we went to, and, after deciding, picked up some accessories and such.  We ended up combining our two devices onto a single plan, which will cost about as much as we were paying separately, but with better reception for him and a bit less data for him as well.  Hopefully it'll go well despite that. 

After the trip to the phone store, I took him out to eat at one of his favorite restaurants, for a very late dinner (around 8 or 9, I think).  Fortunately that particular restaurant is open 'til 10pm, so we didn't have to eat and run.  It was a nice end to what had apparently been an eventful and chaotic day.  I'd had ambitions of taking him out to a movie as well, but there wasn't time. 

This weekend is the trip to CT, which we will thankfully be able to fly for, rather than drive.  Much appreciation to Chris' parents for that!  Driving the 13+ hours is an exhausting, crabbifying ordeal.  Flying takes much less time, is much safer, and once you're through security, is usually much less stressful for me.  Heck, I could even nap on the airplane.  Or do some of these projects... 

Book Review: Autism Encyclopedia

Autism Encyclopedia: The Complete Guide to Autism Spectrum Disorders, edited by E. Amanda Boutot and Matt Tincani.  

While I do, in general, approve of the concept of a complete manual or handbook to any given subject, it saddens me a lot when I find one that advertises itself as "complete" yet has a clear and defining bias.  This particular book has such a strong bias that I can't decide whether it was accidental because the authors and editors literally had no perspective beyond their own, or whether it was purposeful and they told themselves it was "for the greater good," or somesuch nonsense.

In any case: this book should instead be called "Autism and ABA: a Parent's Encyclopedia."  (ABA: Applied Behavioral Analysis, one of the staple therapies for autism.)  Unlike most encyclopedias, it is organized by category rather than from A-Z, which I suppose is also an argument for it not being called an encyclopedia.  Their reasoning for calling it that, aside from making it seem more authoritative is probably because of the length of the sections.  On average, each section is about 5 pages long, and contains a description of that particular subcategory along with sections at the end defining terms, cross referencing other sections, and listing resources on that topic. 

In retrospect, the whole thing really strikes me as more like a textbook than an encyclopedia.  I used to read my parents' World Book encyclopedias when they were new, before we had the Internet.  They were much more fun reading, as I recall...  or at least they had pictures to go with their walls of text.  The fact that each section is neatly titled, subtitled, and divided up for readability is probably the only reason I made it through the entire book.

Some gripes: early on in the book, autism is described, word for word, as "the brain doesn't develop as it should" as if everything that isn't exactly the same/neurotypical is broken.  I think that's hilariously misguided, considering that even if your brain developed normally and looks neurotypical on a scan, it can still suffer from things like depression, anxiety, personality disorders, etc.  That's not just me cherry-picking an irritation here, the entire book is sprinkled through with medical comparisons, as if autism was a disease to be cured.

Listen, people: I am not a disease.  I am a person.  With challenges and special needs and such, sure.  But I am not broken, thank you.  I do recognize that's a difficult statement for parents with newly diagnosed children to swallow, and it would be much easier if they could simply feed their child a pill, have them be cured, and go back to a normal life with normal expectations and fewer complications.  I get that.  But please don't let your expectations get in the way of helping your child have the best life they can.  Some people talk about how having kids lets them experience the world anew, in ways they hadn't expected.  If your kid is autistic, you will absolutely get that experience, and on a much deeper level than with a neurotypical kid.  Because we have to work harder and need more help with each step of development, these types of experiences will not pass you by unless you pointedly ignore them. 

A point of amusement: in the section talking about how people are diagnosed with autism, they refer to the experience as "a battery of tests."  This is both standard nomenclature and highly amusing if taken literally, as though being literally assaulted with test booklets.  My experience with psychological testing could easily be describe as "mentally and emotionally painful."  So it fit, and made me chuckle aloud in the coffee shop I was in when I read that section.

My final note on the book is that if you really want a decent primer on ABA, techniques to try at home, terms, philosophy, etc, this is your book.  It is poorly named, but it seems to be a very good start for educating yourself on ABA at home, and will help you work in tandem with trained and certified ABA professionals and manage things at home.  

I have a complicated relationship with ABA.  Thus far, much of the short term research points towards it having a positive impact on the child's ability to attend school.  It teaches skills and reduces abnormal behaviors.  Effectively, the purpose of ABA is to train your child to act more normally and meet developmental criteria.  Long term studies, though, are beginning to show that is has little positive impact on the long term life of a person. That worries me, since I've read a number of books and met a number of people who effectively say "ABA is the one true therapy."  

I can't personally speak to the matter, since the only behavioral training I had was whatever my parents cobbled together to raise me.  Neither are trained in psychology.  But I worked in an ABA center for a time, and... behaviorism, the school of psychology upon which ABA is based, worries me.  It began on the basis that what the individual thought or felt was irrelevant, because you could train an animal or a person in the same way and get the same results regardless.  Current schools of thought in behaviorism aren't quite so automatically dehumanizing, but ABA does still revolve around "normalizing" people on the autism spectrum.  

In some instances, this is good: teaching eye contact, how to answer questions, engagement with peers, etc, is a wise idea.  The problem is that in some cases, practicioners will literally try to erase any outward manifestations of autism.  This would seem similarly wise, since neurotypical people tend to shy away from people that rock, spin, flap their hands, mutter to themselves, etc.  "Stimming" behaviors, as they're called, are developed for regulation purposes, or in plainspeak: so we can feel better while the situation is making us feel worse.  They serve a purpose.  Take them away, and you have a person without any ways to feel better, which leads directly to very bad behavior.  

Read This Book If

You're intending to start or are already using ABA therapy for your child on the spectrum.  This book is neither an encyclopedia (it's more of a textbook) nor complete in regards to autism, but rather a guidebook to ABA with some side information about autism.  It is readable and divided into convenient sections so you needn't read the whole thing at once, and the language is mostly approachable to laypeople.  Beyond those circumstances, I cannot recommend this book.

Legwork and Life, week of 5/2/17

I'm not sure I'd call much of last week relaxing, but it had its moments.

My back problems may be starting to taper off.  I hope.   I've been back to my normal pillow for over a week at this point, but my back muscles haven't quite forgiven me for messing with them, I guess.  I've been waking up with a sore back, right-middle side.  It's definitely muscular soreness, and it makes trying to sleep in impossible.  Good thing I don't get to sleep in much!  Yesterday morning, though, I woke up with minimal soreness, and so hopefully that trend will continue. 

Last weekend Chris and I went out to a local cultural spot and bar, Founders, with two of our friends and a visiting European friend of theirs.  Bars aren't usually Chris' and my idea of a fun time, but I do, on the whole, get a kick out of ordering a beer flight, which is basically a sampler of four beers.  You pay about 1.5 times what you would for a single beer, but you get to try four different kinds in smaller quantities.  Since I do not, as a whole, enjoy most kinds of beer, and there are so many kinds, it behooves me to try as many as possible in tiny portions.  Therefore, beer flight! 

I ended up trying three fruit-type things and a porter.  I was actually surprised, I liked all three fruit-types.  There was a raspberry ale that was particularly nice, almost as sweet and tasty as the wine coolers we stock at home.  Another one almost tasted like hard cider.  The last was fruity but also seriously chocolatey.  Usually I'm very disappointed with beers that claim they've got chocolate in them.  This one was a very impressive exception.  The porter was pretty much just a porter.  Sadly not my favorite, but I kind of panicked and didn't have time to choose a fourth option properly. 

It was cool to meet Eva, their friend, too.  It kind of seemed like a bar wasn't really her ideal setting either, by some things she said, but she clearly wanted to check out the local culture.  I guess she's very well traveled, especially for someone our age.  In any case, she was fun to talk to.  She plays video games, like Chris and me, but favors much more story-heavy games.  So games like the Stanley Parable, and like Riven and Myst from the old days.  Anyway, I wore one earplug unfashionably in the bar and chatted with everyone and drank beer, so it was a successful evening.

Sunday was a lot more lazy of a day than it would be normally.  We went to church, as usual, but normally after that we go off to play D&D for 4+ hours.  It was canceled today due to our host having unexpected complications in his life, so instead Chris and I went home.  We proceeded to basically nap for 4 hours, which I was sure was going to mess up my sleep schedule.  Thankfully it did not, and that napping session is about as relaxed as I've been for the last year or three.  That probably tells me that I ought to either get higher doses of anti-anxiety supplements or cut some complications out of my life...

And last but not least, today is my spouse's birthday.  Happy birthday, Chris!  I have some things in mind for celebrating, but since he kindly proofreads this blog, I can't write them out or they won't be a surprise at all.  : )