Wednesday, January 31, 2018

Legwork and Life, week of 1/31/18

House Hunting 

Pretty quiet on this front.  The mold remediation people went in, they looked around, and they found nothing.  So that's confusing and troublesome.  They're going to clean the carpets in the place and the sump pump has been replaced, and then re-test, I guess.  Fingers crossed that the test was cross-contaminated by some really awful house somewhere else...

Last week I also mentioned that the bank had appraised the home for about $4k less than we were buying it for.  The upshot is that we're going to split the $4k cost with the seller, and end up getting the home for $2k less than we would otherwise, at the cost of having to shell at $2k at the closing date.  Two more weeks.

With luck, this will be the last complication we have to deal with.

New Home Addition

So this arrived and has joined the list of our possessions.  It's not a great picture, so for anyone confused, that's a recumbent exercise bicycle.  I had to put it together myself, and the box was quite heavy, but it does, at least, come with little wheels on the front, which makes moving it so much easier than it would be otherwise.  

This is the sort of exercise machine I can basically sit on for an hour and do other things while using, which is entirely the plan, in fact.  As a rule, exercise and I do not get along.  My brain tends to panic and flail when I exercise, which makes it very hard to enjoy any form of exercise.  It's possibly because my body conflates the racing heart from exercise with panic.  I'm not sure.  In any case, it becomes a non-issue if I keep to medium intensity and give my brain something else to focus on, like a book or a podcast or a video game. 

This is also going to be nice, because I can literally just... get up and get a drink, if I want one.  Or go use the bathroom, which is my own bathroom.  Chris is thinking about playing a console video game every week, or even multiple times a week, while he uses it himself.  That would be kind of sweet, because we both have a number of console games we haven't touched, but keep meaning to play, and he's the one with the reflexes to manage most of them.

This particular exercise bike is a very basic model, which is to say, it has a computer, but the computer doesn't do any adjustments of the difficulty of pedaling or have any specialized programs.  It tracks your distance, your heartrate, how much force you're exerting, and that's about it.  Which is fine, just not as convenient as the fancy ones at the gym.  At less than $200, that's not surprising.  The seat does seem to be comfortable, though, which is very important as far as I'm concerned.  We're hoping to make a book stand/computer stand to go alongside the bike, to make it more convenient to do other things while exercising. 

Other Notes from the Autistic Life

I mentioned last week that I felt fuzzy and such without my pills.  I can now safely say that there's a major quality of life difference between days that I've taken my pills, and days I haven't.  It's a little distressing, really, that so much of my wellbeing is determined by little capsules of mysterious substances.  (I mean, really, can you identify what's in your pills from looking at them?  I can't.  They all look like white powder or tan powder to me...)  I haven't taken my pills yet today and I can really tell, because I'm not as mellow or balanced or flexible. 

I've also had a resurgence of chapped lip problems.  This was mainly due to the fact that I wasn't drinking my medical gatorade stuff, but simply drinking it again didn't fix the problem.  I actually had to use Gold Bond diabetic skin lotion on my lips to make them stop chapping, along with drinking lots of water and such.  I normally reserve the Gold Bond lotion for badly chapped hands and such, as it puts a protective layer of whatever between the skin and the biting wind, but in this case it was necessary, and seems to have mainly fixed the problem.  So hooray, I suppose. 

I got my hair re-dyed again. It took nearly 5 hours this time, which was just way too long.  I was talking with the student, though, and it sounds like she's going to graduate in August of this year... which is all too soon if you ask me, but she did say she was probably going to settle in about an hour south of here... which means that if I wanted to get my hair redone, she could probably do it, and in a home setting rather than a noisy school or expensive salon.  That would really be preferable, as the environment of the school is really starting to wear on me. 

Monday, January 29, 2018

Reading the Research: Putting Superheroes into the Classroom

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 features superheroes, and one professor's ideas on how they can be used to teach science in the classroom.  Hawkeye, the master archer hero from the movie The Avengers, is the article's example for how to teach science relating to the human (and avian) eye, DNA, genetic engineering techniques, and transgenetics.  How? 

Well... the super hero Hawkeye is so named because he has superhuman reaction speeds and superhuman eyesight, roughly on par with that of many birds of prey.  You can take that information and lead right into a discussion of the anatomy of an eyeball, human versus eagle or hawk eyeballs, what a human sees in a picture versus what a hawk would see, or even start a discussion on how one would give a human similar vision to Hawkeye's using genetic modifications. 

Such a discussion could also lead to superhero themed homework, suggests the article, with students calculating the limitations of his vision and how he might defeat supervillains under specific circumstances. 

If this all sounds strange to you, then perhaps you're not familiar with teaching for special interests.  Some autistic individuals develop hobbies and dedicate themselves to those hobbies, to the point where they aren't interested in other activities.  This presents a challenge in schooling, because not everything they teach in school is useless.  (But I was definitely told I wouldn't have a calculator everywhere I went.  Hello from my tablet, which I carry everywhere and which definitely has a calculator!)

So while efforts should be made to allow autistic children to develop these hobbies, efforts also should be made to tie those hobbies to daily living skills, and academic subjects.  This can be challenging at first, but with practice and creativity, it becomes much easier. 

How far can Hawkeye see if it's dusk and his vision is roughly that of a hawk's? (biology, research)  If Hawkeye needs to shoot down a bad guy from 100 feet away, how much force does he need to put behind his arrow?  (physics, math)  Can you create a short story about Hawkeye defeating his former mentor, Swordsman, in 2 double-spaced pages?  (literature, writing)

This doesn't have to be strictly the teacher's area, either.  Parents can take this technique and use it with mainstream homework.  Math problems can be reflavored to be Hawkeye-related, using the same essential numbers in the stories.  All the child's short stories for English class can be stories about Hawkeye.  Biology projects can be on hawks.  Physics projects can be on archery. 

In all honesty, when I was growing up, I, like most students, found the basic math problems and logic problems in textbooks atrociously boring.  Adding in facets of pop culture, like superheroes, would probably have helped my attitude towards learning, and perhaps even the attitudes of my peers.  People in general prefer information that seems relevant to their lives, after all.  And in some senses, autistic people are just normal people, only moreso. 

Friday, January 26, 2018

Book Review: What Every Autistic Girl Wishes Her Parents Knew

What Every Autistic Girl Wishes Her Parents Knew, edited by Emily Paige Ballou, Kristina Thomas, and Sharon daVanport, is a collection of essays by adult autistic women, answering the implied question of the book's title.  I found a recommendation for this book online, and had to order it from the statewide library system so that I could read it.

In short, it was worth the effort.  This is a fantastic book and I consider it required reading for any parent of an autistic child.

I was initially somewhat suspicious, as it is wise to be, of this book which claims to speak for autistic women.  Autism, as I've tried to express in entries past, is a very complicated, multifaceted, and unpredictable condition.  The saying is, "if you've met one person with autism, you met one person with autism." (Attributed to Dr. Stephen Shore)

However, my fears were unfounded when it came to this book.  Certainly not all pieces of advice and promptings here apply to every autistic child, or even every autistic girl... but in large part, the book proscribes broad ideas (like assuming competency and capacity, teaching and setting boundaries, allowing for autonomy, and letting the person grow at their own pace).  These ideas are, frankly, a good plan for any autistic person, not just a female one.  That said, the book does address some specifically female issues, such as makeup, feminine clothing, periods, and boundaries in a sexual context.

To my astonishment, it also addressed issues of gender and sexual orientation.  This book was published about a year ago in 2017, but given how incredibly hetereosexual-centric and cisgender-centric most of the literature on autism is, I was not expecting such subjects to be addressed, let alone discussed in any reasonable fashion.  But one of these essays was written by an autistic trans woman, who I was both grateful to learn more about and saddened by her difficult experiences.

That's not all that made this book stand out, though.  Much of the autism literature that is written by autistic people is written by people like me: so-called "high functioning," verbal autistics that can pass as neurotypical most days, in most contexts.  This book specifically includes a couple essays from "high needs" and "non-speaking" autistic women.  These are people who would otherwise be relegated to institutions, but due to hard work and help, are able to live independently and bring help into their own homes as they need.  And they have some very strong things to say about institutions, things I wouldn't have dreamed of considering.  If the entire book was only those essays, I would still insist this be required reading for any parent of an autistic child. 

The essays in this book come in a variety of arrangements, from letters to bullet points amidst paragraphs to labeled sections covering topics.  This is also the only book I've ever read where the introduction is just as valuable as the rest of the book.  I know some people skip the introduction, preface, foreword, etc.  I never do, but if you do, please please read the introduction anyway.  It's worth it.  It summarizes a major point, that there's a place for each autistic person no matter what their capabilities and personality, in a very powerful way.

All in all, this book goes on my wishlist and on my bookshelf permanently.  I cried over a few sections of it, because of the familiarity and because in so many ways, it's what I wish my parents had known when they were raising me.  It's a primer in how to raise an autistic child the right way, not specific steps so much as broad ideas from which to create those specific steps.  I can't recommend this book highly enough. 

Read This Book If

You're the parent of any autistic person, even if that person isn't female.  The contributors of the essays in this collection have powerful and important things to say to you, and you need to hear them.  Fellow autistic people like myself, professionals, and educators will also find this book valuable in their quests to engage with the autism community and help autistic people grow and be who we should be.  Honestly, if I could make everyone in the world stop and read this book, I would. 

Wednesday, January 24, 2018

Legwork and Life, week of 1/24/18

House Hunting

The mold results came back.  They were discouraging.  There's black mold growing in the basement of the condo, probably around the sump pump.  Several other types, too, but I'm most worried about the black mold, which I'm told has bad effects on normal people.  As I'm sensitive to mold, I suspect its effects would be rather more deleterious to me.  

As is apparently standard for this stuff, the issue went back and forth about whose responsibility it was to fix the mold situation... but it currently seems like the seller will split the cost of the mold remediation with us.  Black mold is a special kind of nuisance to clean up: apparently when disturbed, it spews millions of spores into the air, thus basically mandating plastic tents and trained professionals to clean it up.  

Current estimation for costs to fix it run from $200 to $500, but if the source isn't the sump pump's well, this is going to be quite a headache.  It's probably the sump pump, though.  

The bank has also come back with their appraisal of the place, which is naturally lower than what we've agreed to pay for it.  Which means they won't give us a mortgage for the full price we've agreed to pay.  So there's going to be a headache and a half while we try to figure out what to do with that situation.

Beyond that, everything is paperwork and stress.  The closing date is still more than 3 weeks away, but paperwork seems to keep cropping up, and one fidgety detail after the next after the next.  I hope we really love this place and stay in it for the next 40 years, because this affair has been so bad for me emotionally that I kind of never want to do it again.  I don't think any aspect of it has been fun.  

The Bracelet is Dead, Long Live the Bracelet

Unrelatedly, my rainbow bracelet finally broke.  

I've had that bracelet since 2012, when I made it in support of gay rights and because of my love of colors.  This picture isn't great, but it's been my near-constant companion each day I could handle wearing jewelry.  Some of the colors in this bracelet aren't being made by the supplier any more, which makes it basically impossible to replace.  

As I wore this bracelet, it came to represent a lot more to me than simply gay rights and colors.  The events of Ferguson, Missouri occurred, which highlighted the systematic oppression against African American people.  I was also introduced to a trans woman, who was in the process of transitioning at the time, and given some more exposure to the other letters in "LGBTQIA+."  So the bracelet eventually came to represent my belief that all minorities, whether they're racial minorities, neurodiverse minorities, sexual orientation minorities, gender minorities, religious minorities, or other minorities, deserve fair treatment and representation. 

Needless to say, I was upset when one of the white rubber rings broke, making the bracelet unwearable...

Fortunately, I made that bracelet, and I still have some of the supplies to "remake" it.  So I did.

It required carefully opening every single metal ring in the bracelet, removing all the old rubber rings, and replacing them with new ones.  I think I mostly managed to do it without letting the pliers scratch the metal rings, which is good, because I can't replace at least a quarter of the colored rings in there.


I'm doing okay.  I'd like to say I'm doing well despite the circumstances, but honestly I feel pretty fuzzy and out of it today.  I forgot my pills today, which I'm quite sure didn't help at all, but we also had another bout of mold in the house, which tends to kill my mood very impressively, and for quite a long period of time.  The mold has been removed, I think, but I've only just gotten the bedding washed, and the place aired out.  The scratch in my throat that seems to denote "mold in the house" is mostly gone, but the ill effects seem to be lingering.  

I'm back on my 2 day a week exercise program, though, and have sore muscles today from pushing my arms a bit on Monday.  I may stop beefing up my abs and back using the machines and start trying to do crunches and curls instead, though.  My middle already feels fat enough without adding more muscle there, and I could probably use more endurance on my core muscles, rather than just brute force.  Still thinking on it.  

I do seem to be keeping up with the blog, and I'm halfway through the book I need to review.  It's a good one, too.  I think you'll like it. 

Monday, January 22, 2018

Reading the Research: Brain Connectivity and Intelligence

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.

What exactly is intelligence?  How do we identify it when we see it?  Today's research article sheds some light on the subject, and suggests an interesting alternative to the "intelligence is genetic" assumption.  Many people on the autism spectrum have unusual intelligence, which may well be explained by this theory.  (Some of us have Intellectual Disability, while others excel at IQ tests and formal schooling, to the point of genius-level IQs.)

When we say "smart," we tend to refer to "book smarts," or your ability to learn quickly and easily in a standard school setting.  This is only one kind of intelligence, but it's the kind most focused on in childhood.  (There is also emotional intelligence, street smarts, spatial intelligence, musical intelligence, and a lot more)

So long-held assumption about IQ intelligence is that it's genetic.  Smart people tend to have smart kids.  If you weren't lucky enough to be born into a family with smarts, you probably don't have them.  That's the going assumption outside Academia, as far as I can tell.

But what if that's wrong?  What if your IQ wasn't based on genetics, so much as how well your brain talks to itself?  My experiences with LENS, and current research in general, suggests that brain connections can be altered.  A poorly connected brain could be prodded to talk to itself better, over time, which would literally mean the person would become more intelligent.  You could literally fine-tune someone's brain connections so they'll perform their best on assessments, in school, and in life in general. 

Every two weeks, I go to a clinic that offers a form of passive neurofeedback called LENS.  The theory in using it is that it changes the ways the brain is connected.  There is no single "right way" for a brain to be connected, because even in neurotypical people, everyone's a bit different.  But in some cases, the brain can be too strongly connected between some parts, and too weakly connected between others.  The idea behind LENS is to prod those connections toward a more optimal configuration.  This is done by selectively energizing small sections of the brain, always carefully to avoid any unpleasantness. 

The result, after a few years, is a better working brain, as far as I can tell.  I have less anxiety overall, and spend less time fighting that anxiety and the accompanying depression.  I can smile at a camera or a baby, and expect that smile to not be hideous.  Given these results, I'm well-inclined to believe this theory they've posited. 

This new theory doesn't rule out genetics being a factor, by the way.  Genetics basically set the stage for this sort of thing.  I would guess that some people have naturally better or worse connected brains, to start with, and then environmental factors take their toll.  People used to popularly theorize that African American people were somehow "dumber" than white people, and some people still do that despite the current findings: black people are just as smart as white people when you account for differences in the available educational systems.  However, systemic racism limits the range of schools available to black children, curtails the wages of black workers (which further limits their options), and curbs the ambitions of black people who want to do better in life than their parents.  Which I assume is why, two Christmases ago, I heard someone of color commenting on how the black people in my city didn't seem as smart as the ones they were used to at home. 

I fervently hope we can figure out a safe, reliable, inexpensive way to make LENS-like therapy available to everyone, because I firmly believe in leveling the playing field as much as possible.  There are too many talents and skills being lost to shoddy, under-funded education.  In the meantime, though, I expect there are also optimal ways to raise your children so as to maximize their intelligence... but I frankly have no idea what they are.  Even as someone whose IQ scores rank as well above average, the most I could say on the matter is this: being slightly curious about literally everything around you is helpful to learning how things work.  And I guess, trying new things is good for you.  But I dislike that latter bit, because I'm autistic and like things being predictable and the same, not new and confusing and different. 

Friday, January 19, 2018

Autism, Acting, and Acceptance

Been a while since I did an article piece for these Friday posts.  This one got linked to me months ago, and I've been chewing on it since.  Some things said by the other consumer reviewers during my recent trip to Washington DC reminded me of this article, and so here it is.  It's about how autistic people tend to suffer when we feel like we have to hide our true selves, and the higher incidence rate of depression and anxiety in the autistic population.

First, on social camouflage.  This is very much a thing.  Autistic people are kind of like aliens stuck on Earth, only without a home world or the strength of a native culture to cling to.  We simply are who and how we are, and we don't usually quickly or as easily pick up the cultures surrounding us.  This creates points of conflict, because the people and cultures around us expect us to do that, and feel miffed and upset when we don't act according to their specific rulebooks.

Some autistic people are better at maintaining a neurotypical disguise than others.  In general, it appears that autistic women tend to be more adept at it, and some autistic people harness their observational skills and other abilities to excel at acting.  Which naturally translates to managing the neurotypical act relatively well.  This is somewhat rewarding in that people tend to accept us somewhat if we do this acting, rather than almost invariably shunning us if we don't.

Herein lies the problem, though.  People who routinely force themselves to lie in this manner, regardless of whether they're autistic or not, tend to suffer.  It's draining to keep up such a comprehensive act, and it's painful to know you have to do so because people won't accept you for who you are.  Want to know why the autistic population suffers from a higher incidence rate (up to 70%, or higher) of depression and anxiety?  This is why.  It's not just the unusual genetics and poor diet and the lack of exercise.  It's having to spend much of your waking life pretending to be something you're not.

The article makes a comparison of peoples' rejections of autism to a rejection of their Scottish heritage.  Since autism is considered by many autistic people as a part of their identity, being rejected because of it was similar to being rejected for your grandparents' country of origin.  I thought this was a somewhat apt comparison, but I have a better one.  Imagine, with me, that you were African American.  And people at work or at school would come to you every day, or every week or so, and say, "Y'know, I like you, but I wish you weren't so black.  You talk weirdly, and that makes me and other people uncomfortable.  You should stop being so black."

Now, when you go home, the fact that you are black doesn't matter.  The people who love you are also black, or they know you and are used to how you talk.  They don't make an issue about it.  But you regularly get this message from your peers that you, as you are, are not okay.  Don't you think this would start to wear on you?  You might try to change a bit.  You could work at talking exactly like your coworkers while you're at work.  But really, hard as you try, your skin is going to still be darker than your coworkers', and even if you change how you talk, they're still going to be uncomfortable.  Do you know why?

Because the problem is not your skin color, or how you talk.  The problem is that your coworkers can't handle the diversity.

I visited Washington DC recently, as I mentioned in the beginning of this entry.  It was an enlightening experience for a lot of reasons, but one of the more striking non-science-related things was the sheer amount of diversity in the hotel staff and the airport staff.  I swear to you, at least half of the staff at those places were people of color and widely diverse backgrounds.  There were still white people, obviously, but many of those spoke languages other than English.  And the others, the people with darker skin?  Mexican and South American countries, African American, Middle Eastern, Indian, Asian...  I kid you not, I saw a lady dressed in a full length Muslim garb, wearing a TSA badge, as I was heading home.

It was both confusing and remarkably heartening.  I'm from a place that is apparently Wonderbread Central when it comes to diversity, despite the African American population in and around the city, and various small communities from South America.  But as I walked through this sea of diversity, I found that despite my strong belief in the superiority of having a diverse mix of humanity, I was nervous.  I didn't know what to expect amidst all that diversity.  I hadn't had enough exposure to all those different cultures and languages to feel comfortable amidst them all.

The thing is, I was willing to learn.  As far as I can tell, a lot of people aren't.  The neurodiversity movement, which insists that humanity is better for having autistic people and other unusual people around, is being ignored by the medical community.  The American Psychological Association continues printing publications that pathologize more and more parts of humanity.

I'm not going to argue that autism doesn't come with downsides and disabilities- it does.  But the hugest emphasis for parents and professionals is "curing," or "healing," or "reversing" autism, with autism representing every disability in the autistic person.  No thought is given to the strengths of autism: our unusual perspectives, our love of justice, our empathy, and our expertise in our chosen hobbies.  When everyone constantly rejects you for who you are, and you have to wear a mask in order to be accepted, you're going to suffer.

Personally, I learned to build, and then wear, a neurotypical mask over the course of a decade and a half.  The process was so gradual that I cannot, to this day, say precisely where the mask ends and my face begins.  The time I wasn't using to establish and maintain friendships in middle school, high school, and college (because I had few-to-none), I spent learning how to act like a "normal" person.  Rather than learning a hobby, I learned to make a neurotypical mask.

I'm still trying to unravel that mask to this day.  My autistic colleagues in DC commented they'd had similar experiences.  Instead of learning about themselves, autistic people can spend so much time learning about how society expects them to be, that they don't necessarily learn what their authentic self is.

Because the author is a decent human being, they end their article on a call for more acceptance of autistic people.  They suggest teaching neurodiversity in college, and researching ways to improve acceptance of autistic people.  I suspect this call doesn't go far enough.  Changing how Academia views us is a good step, but we have to go further than that.  The medical profession needs to hear us, too.  If we can change how they're taught in Academia, and then educate the remainder who are already out of school, the resulting medical system will begin to see us as people.  Not just a disability.  Not just a diagnosis.  People, with strengths as well as weaknesses. 

Wednesday, January 17, 2018

Legwork and Life, week of 1/17/18

House Hunting Progress

I mentioned last week that our offer on a nice condo had been accepted.  We've since gotten the basic house inspection report back.  Just a few things wrong with the place.  The sump pump is entirely busted, to start with.  For anyone who (like me) really had no idea what that is, it's basically an anti-flooding machine in your basement.  If water starts to build up in the ground under your house, the sump pump turns on and pumps it away.  

This particular house is on such a steep grade that it almost doesn't matter, but it's a detail I'd rather not find out later that we do need, so after an annoying amount of discussion back and forth between us, our realtor, his realtor, and him, the seller has agreed (finally) to fix the thing.  It's not an expensive fix, and he's walking away with tons of money, so I'm not really sure why it took this long.  

The other thing the inspector was concerned about is the garage door.  Or specifically, the complete lack of any safety features whatsoever on the garage door.  Y'know how most garage doors have an electric eye or a pressure sensor on them, so that they don't crush small children or animals?  Sometimes they even have both.  This garage door has neither. This garage door will crush you under it and not care.  

Now, Chris and I don't have pets or small children, so we're not very concerned about this.  But we'll probably fix it within a few years, because it's probably bad form to have a death garage in a neighborhood that might have children.  

Beyond those things, the house is basically in excellent condition.  We're somewhat peeved with the situation at present because the seller had initially said he was getting rid of all the furniture in his home except for a few pieces in the basement bedroom.  Since it was nicely matched furniture, we got excited and put a reasonable offer on the various pieces we were interested in.  Next thing we heard, he basically said, "Oh, just kidding, I want everything upstairs too," and then amended it a few days later to, "and you can't have any of the pieces in the basement that you really wanted either."  So we've basically just thrown up our hands and said, "You just keep all your crap, 'kay?"  It's not that we won't have any furniture to put in the place, but it's going to be a bit sparse for a while.

We'll probably go furniture hunting at a later point.  There are lots of secondhand shops in the area, including a Habitat for Humanity ReStore.  So we'll probably make a list, prioritize it, and then go hunting after that.  

The last thing we have to worry about is the mold inspection, which I'm hoping will come back on Thursday.  We're still juggling paperwork and financial annoyances, in the meantime, but due to the generosity of my family, we'll be able to make the full 20% down payment instead of a lower payment that requires a bunch of fiddly extra complications.  (It'll involve an extra "loan" that the bank won't be privy to, but whatever, we're happier paying back family than we are paying back a bank.)  

Other News

House hunting has kind of consumed my life, as the above paragraphs probably tell you.  But in other news, my back finally seems to have recovered.  I strained it on the car trip home, and it stubbornly refused to finish fixing itself.  I had to readjust my bed to be firmer, in the end, but I'm pretty sure when I woke up this morning, my back didn't hurt, and there's only the slightest pulling sensation now when I crane my neck forward.  So yay.  This sort of thing makes me feel old, so I hope this was just a really impressive strain, and not a harbinger of things to come.  

Yesterday the official press release for the DC trip (Autism Research Program) hit my inbox, so that got posted on the blog. It tastes, to me, like well-oiled publicity machine, but my gentle readers should probably keep in mind that the experience itself was a great deal less scripted than this publication.  A more personalized and in-depth account of the trip was posted last Friday.  As far as my "do important stuff for/in autism" goal for this year goes, I dunno if I can top this trip.  But I can certainly try!  

Next up on my list is following through on a recommended reading list I got from an advice column, though.  While most of the books I've reviewed for this blog have been whatever was in the library that looked interesting.  Sadly, most of what's in the library is "scientific approach to autism" or "my family's story with autism (written by the mother)".  The books I'm going to be digging into soon are written by autistic people, about tough subjects like dating and sex.  Additionally, a couple of them deal with autistic women.  A lot of the emphasis in current research is on autistic boys, with girls just assumed to be similar.  That is not true, all too often.  So that's something to look forward to.  

On the exercise front, my spouse and I have resolved to buy a recumbent exercise bike.  Probably a secondhand one, because we like things that work but that aren't expensive.  So something like this will probably be ours, soon, and shortly thereafter, I'm going to be spending a lot less time in front of the computer and more time in front of a TV, or with a book in hand, or with my tablet in hand while I cycle.  I've been feeling like I haven't done enough listening to podcasts or watching the occasional TV show that I'm trying to catch up on, so this would be an excellent way to do that.  

Mostly people would do those sorts of catch up things in their free time, I expect, just flop on the couch or whatever and do that, but between the noisiness of my apartment complex and the fact that I can't process two streams of words at the same time, I pretty much just opt for silence in my free time.  I can't focus if I'm trying to write a blog entry and listening to a book on tape at the same time, or listening to music with words, or someone's screaming across the parking lot because they're an ill-mannered lout.  

So, good things on the horizon, hopefully!

Tuesday, January 16, 2018

Autism Research Program Press Release

Just one last thing from the Autism Research Program experience: the official press release (which included fill-it-in-yourself sections):


The Autism Research Program (ARP) research advocate Sarah Frisch recently participated in the evaluation of research applications submitted to the ARP sponsored by the Department of Defense. Sarah was nominated for participation in the program by Autism Support of Kent County, in Grand Rapids MI. As a consumer reviewer, they were a full voting member, (along with prominent scientists) at meetings to help determine how the $ 7.5 million appropriated by Congress for Fiscal Year 2017 will be spent on autism research.

Consumer reviewers represent the collective view of those living with autism by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Sarah said that, “This was an extremely educational and valuable experience.  The work was somewhat grueling, but with the help of my mentor consumer reviewer and a lot of patience, I did manage to get it all done despite the winter holidays.  But being able to speak to other consumer reviewers and the scientific reviewers about research and their experiences was a fantastic experience, and I hope to bring that knowledge home to help parents and other autistic people”.

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since 2007. Colonel Wanda L. Salzer, M.D., Director of the Congressionally Directed Medical Research Programs expressed her appreciation for the consumer advocates perspective during the scientific review sessions. “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind us all, of the human element involved in medical research.”

Scientists applying propose to conduct innovative research focused on the understanding of autism and improving the lives of those with autism. The ARP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of- the-box thinking.

More information about the Department of Defense ARP is available at the Website:

Media Contact:
Erin Bolling, Public Affairs, 301-619- 7783

Monday, January 15, 2018

Reading the Research: Late Diagnoses in Autistic Girls

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

Today's article addresses why fewer girls get diagnosed with autism than boys, with the currently quoted ratio being about 4 boys with autism to one girl with autism.  The gist of it is that the tests are likely currently geared toward how autism manifests in boys, which leads to not detecting girls at the same age as boys.  Girls are affected differently by autism sometimes, a fact to which I can probably safely attest. 

One of the major differences the article points out is that autistic girls tend to be better at "faking it."  Small talk is not necessarily a problem for us, nor are other brief types of social interactions.  But it can be harder for autistic girls to manage day-to-day life.  So things like getting up, getting dressed, keeping your papers and binders in order, etc, tend to present more of a problem for autistic girls than for boys. 

Speaking as someone raised female, and someone autistic... I can safely say that I did blend fairly well, after awhile.  Enough that I made it most of the way through college before anyone seriously suggested I go get a diagnosis.  I remember having to ask my mom, in middle school, how to make small talk.  But she told me how, though not precisely why, and I learned.  I heard similar stories in Washington DC, earlier this month, from other autistic self-advocates.  Lots of us didn't fit in, and did struggle with handling life and its challenges, but we didn't receive a correct diagnosis, or even any diagnosis at all.

These researchers seem interested in ending this phenomenon of late or nonexistent diagnoses, by studying biological sex differences as well as gender differences.  Right to the point of using the word "cis" in a sentence.  That's so forward-thinking, I just about smiled.  ("Cis" means that your gender identity matches your biological sex.  So if you were born female and identify as female, you're a cis woman or cis female.  We already have words to describe people whose biological sex and gender identity don't match, but not everyone's heard the word for when they do match.) 

Hopefully these folks will continue to publish their works, as it seems like they have a decent grant from the National Institute of Health to study these effects of biological sex and gender.  This is particularly relevant, as it seems from my reading that autistic people tend to be less constricted in our gender identities than neurotypical people.  I, for example, identify as agender (meaning I would like you to take your gender stereotypes and keep them far away from me).  But others I've met identify as both genders, or feel more one way than the other some days, or what have you. 

I mentioned my (lack of) gender identity to the other autistic self-advocates when I was at the conference in DC.  While one of them merely felt overwhelmed by the whole "gender vs biological sex" dimension to life, one of the others commented that she hadn't really thought about it, but since I mentioned it, she also didn't feel particularly feminine or female. 

So this is definitely a group to watch, all things considered.  The group is most interested in improving diagnostic rates, but the resulting research should be interesting from a gender identity perspective as well.  Relatedly, I might start taking notes on which researchers I meet, if I get to meet more, and see if I can track their research.  It'd be interesting to make connections and influence research that way, but I might need spreadsheets to keep track of it all... 

Friday, January 12, 2018

What I Learned from the Autism Research Program

How This Happened, and Getting There

I went to Reston, Virginia, just outside Washington DC recently.  I've covered this in recent entries, but for readability's sake, I'll rehash it.  About a year and a half ago, John Elder Robison, one of the most respected autistic self-advocates in the US, put out a call for autistic people to sign up to be research reviewers for the federal government's research programs.  I looked at the information, said, "Why not?" and sent a message to the contact listed.  You need to be vetted by an organization, which I was, via Autism Support of Kent County.  To my surprise, (and after an interview process) I was invited to participate.  2016 went by, and nothing happened, so I sort of forgot about the matter.

Fast forward to around Thanksgiving 2017 this year, and my phone rang with the opportunity to participate in 2017's Autism Research program.  40 hours of work, reading, researching, and reviewing scientific proposals, right through December.   At the end, a trip to near-DC to do the final reviews.  I winced, admittedly.  My December was already going to be stressful with the holidays.  But it was a hard opportunity to pass up- the chance to advocate not just to parents (though that is definitely important) but to researchers, who rarely leave their labs to begin with.  I couldn't say no.  Unsurprisingly, December was kind of insane.  But I did manage to get all the work done, despite much dilly-dallying, the traveling, and the time demands of the holidays.  The government paid for the airplane tickets (but not the baggage fee, which is reimbursed separately), so off I went. 

There were two different groups for this year's grants: theoretical research, and clinical trials.  The theoretical research was unfortunately the much larger category, and also the one I was assigned to.  This was rather disappointing, because part of what I'd wanted to do in DC was explain to these scientists how incredibly important immediate results were.  I wanted to tell them that time was up on researching "mechanisms" and genes, and specific processes that might increase autism rates, because we need help now, and we're not getting it.  I somehow managed to do all my preliminary reviews and get to DC without realizing that I'd been specifically assigned to the "theoretical and new ideas" section of the grants.  This was unfortunate, because I had some variation of, "this isn't helpful immediately, maybe consider that we need help now?" in 7 of my 10 reviews.  Slightly embarrassing, suffice it to say.  I had to do a lot of rewriting my reviews at the end of the trip...

The specific aim of that group wasn't the only problem I had.  At least a third of the research proposals I reviewed involved experiments on mice.  These are called "mouse models," and they're a staple in a lot of autism research.  Instead of experimenting on autistic people (which is hard to get past an ethics board), you experiment on mutant "autistic" mice.  I found this both annoying and utterly perplexing.  How do you make a mouse autistic?  Is that even possible?  How is that even a reasonable thing to do?  So at the end of the first day (which was more meet-and-greet than it was reviewing research), I asked the room of other reviewers if someone would please explain mouse models to me.

Mice Are Not Autistic

I got one taker to explain mouse models, an older man, who roped a friend of his into helping to educate me.  I later pestered a third scientist for a different perspective and better understanding of the subject.  First: the mice are not autistic.  You literally cannot make an autistic mouse right now, and you may never be able to.  Because we don't know what causes autism, only dozens-to-hundreds of factors that can play into the question, you can't make an exact representation of autism in a mouse.  Some of those factors are genes, too, and mice have different DNA than us.  Some mutations that seem to play into autism are lethal if applied to mice.  Especially if you try to do more than one.

So mouse models are relatively simple mutated mice.  Only a few different genetic modifications.  Too much more than that, and the mice stop breeding, or don't produce offspring even if they do breed, or just outright die.  So it's a tricky balancing act, because you need the modifications to make the mice have autistic-like traits.

There are whole jobs revolving around simply creating mutant mice for studies like this.  It's a hard job, too, because you have to adhere to three kinds of ideal standards:
  1. Face Validity- the mouse behaviors need to look like the autistic behaviors.  So, one example is a particular mutant mouse strain is prone to jumping, repeatedly, for long periods of time.  This roughly corresponds to stimming, and so they do experiments on those mice to test things that might affect stimming.  Needless to say, mouse models tend to handle this type of validity fairly well. 
  2. Construct Validity- this one is a bit harder.  Now our mice can't just seem to be stimming, they need to have genetic abnormalities or specific environmental condition triggers like actual autistic people.  Some of these genetic abnormalities are outright fatal or otherwise unusable in mice.  So you can see this starts to get complicated.  
  3. Predictive Validity- the mice have to respond to treatments, like medicine, in the same way an actual autistic person would.  Otherwise the mice are of minimal use for the experiments, because this is the whole point.  If something works for a mouse, you want there to be a pretty good chance it'll work for a human the same way, too.  
Lining these three types of validity up perfectly in a mouse model of autism is not feasible at present, because again, we don't know what causes autism.  Trying to model it perfectly is just not possible.  So instead these mouse models tend to focus on specific identifiable features or side-traits of autism.  Usually at least two.  Stimming, or sensory sensitivities, or social interactions, or specific genetic quirks.

And the big question I had to ask: why mice?  Why not monkeys?  Why not something larger and more close to actual humanity?  The answer is, perhaps unsurprisingly, money.  Mice are very inexpensive.  Techniques for meddling with their genetic codes are well researched and relatively simple.  Also, they have quick life cycles, which lets you test a lot of generations in short order.  If you used monkeys, or dogs, or even chimpanzees, you'd also risk a lot more outcry from animal activists.

The Reviewers Themselves

So it's pretty much mice.  And some rats.  But almost nothing else.  Micemicemicemicemice.  Listening to the researchers talk about their subjects, I kind of wonder if they aren't more familiar with, and more fond of, their rodent subjects than they are the autistic population they're trying to help. (This isn't to say that these researchers weren't willing to learn from me, or were bad people or something.  All of the people I met on this trip were pretty much lovely, and my comments and observations were verbally appreciated by more than a few people.)

Speaking of the researchers, it didn't occur to me at the time, but in retrospect I should have probably guessed: researchers are almost invariably huge nerds.  This was very comforting to me.  Nerds are easy to talk to.  You just ask them what they do, or what they care about, and sit back and listen while they spout whole paragraphs and pages about it.

I did kind of regret not asking more of the researchers about what got them into studying autism.  There were all sorts of people there, with a dozen accents from all over the world, it would probably have been a lot of interesting stories.  At least half the scientist reviewers were women, which I found unusual given the statistics for STEM careers.

Quite a bit of chatting and socialization ensued, even outside of the reviewing hours.  I tried to make it to most of the formal and informal events, but didn't entirely succeed, given how tired I tended to get by the end of the night. 

Every consumer reviewer was biologically female, also.  That was a little strange, considering the ratio of male to female autistics is 4 to 1.  (I say biologically female, because I'm agender and when I talked about it with the other reviewers, at least one of them commented that she didn't feel particularly female either, now that she thought about it.)  At least two of the other autistic reviewers are in the category that I tend to call "The Lost Generation," except they themselves weren't actually lost.  They got their diagnoses late in life, and didn't get shunted into mental institutions and prisons (these two things are sometimes the same).  A lot of their generation weren't so fortunate, particularly the more heavily affected ones.

In addition to the other autistics, there were also a couple mothers of autistic children serving as consumer reviewers.  The one that served as my mentor was retired military, and has a more heavily affected son in his 20s.  She was quieter than the others, but had lots of good things to say when she did speak up.

On the Whole...

This was a pretty good experience.  I learned a lot of useful things, met a lot of interesting people, and I'll be getting paid for it.  I would definitely do it again, particularly if the bulk of the reviewing didn't have to happen around Christmas.  It was still doable, obviously, since I did it, but if I had to do it again, I'd definitely just do it all before leaving for the holidays, and not have to care about it later.  

The reviewing rooms were set up relatively comfortably, with a special laptop for each reviewer and a microphone between every two reviewers.  The chairs were arranged in a very straight U shape, with the moderators at the bottom of the U and the reviewers in two lines facing each other.  This allowed for some ability to see who was talking, and for everyone to see the screen at the far side of the U.  There were also support personnel off to one side, but they kept quiet unless called upon.  They were there to take notes, provide tech support, keep track of time, etc.  

I can't (ever, for some reason) talk about the research I reviewed specifically, though I will say there is definitely one researcher out there that needs to be smacked upside the head repeatedly with an ethics book.  I pointedly didn't memorize the institution and head researcher attached to that study, so I couldn't be tempted to yell at him later.  

As a side note, this program through the US government is the only grant program in the nation (for all conditions, not just autism) that includes consumers in its reviewer ranks.  It's common enough to have scientists look over the other scientists' work, but asking the opinions of people whose lives are directly affected by your research is apparently a very new thing.  This knowledge was rather dispiriting to me, but it probably means I'm never going to be out of a job as a self-advocate...  It does strike me as kind of hilarious that the government is at the forefront of progress in this area.  Y'know, the same government that trundles slowly, ponderously forward in pretty much every other case. 

My amusement aside, the staff of the program were pretty much unfailingly polite and willing to listen.  The scientific reviewers were a bunch of good natured nerds, for the most part.  The consumer reviewers were all interesting, pleasant people.  It was definitely an interesting experience, and one that gave me a lot to think about.  If nothing else, I should also be better able to read research articles for my Reading the Research posts. 

Wednesday, January 10, 2018

Legwork and Life, week of 1/10/18

So Long, Renting!

So first things first, house hunting.

The night before I left on my business trip to Washington DC for the government work, my spouse and I went to see one more property for sale.  A condominium this time.  It was priced relatively low, and had fewer bedrooms than we'd been looking for, but it was cozy and spacious at the same time (somehow.  I really don't know how that works).  We liked the place a lot, and decided to put an offer on it.  Our realtor kindly handled most of the gross paperwork.  Did you know you can draft and sign house buying and selling paperwork online now?  I just found that out.  It was very handy, because I went off to DC the very next day, and wasn't around to sign anything in person.

We offered pretty near the asking price, as it was well within our budget and we really liked the place, with an escalation clause.  That basically meant we were willing to automatically offer a bit more than an offer higher than our starting offer, up to a stated amount.  But it turns out we didn't need to: our original offer was accepted.  We still have to get the place inspected and make sure there's nothing horrifically wrong with the place, but I'm optimistic at this point.

Reviewing Autism Potential Research

In other news, I went to Washington DC this week.  Or I guess more correctly, I went to Reston, Virginia.  I think if I actually got too near the capitol proper, I might go hunting politicians in order to verbally lambast them for the events of the last year or so, and that would end poorly for everyone involved.  This trip, anyway, was unrelated to national politics.  Over a year and a half ago, my spouse sent me some information that showed up on John Elder Robison's Facebook page.  Information about how to apply to be a consumer reviewer for autism research.

I firmly believe in the self-advocacy mantra: Nothing About Us Without Us, so I set about volunteering myself to do this work.  To my somewhat surprise, I was given an interview, and then offered the opportunity to join the government's pool of consumer reviewers (that is, people directly affected by the subject under study).  I accepted, and heard nothing for over a year.

This year, the program apparently changed hands, and I was called on to serve.  This involved a lot of prep work, the trip to DC, and roughly two and a quarter work days worth of intensive discussion of each proposed research study.  For the prep work, I was assigned ten research proposals to directly review beforehand, and had to write a critique on how I thought each one would affect the autism community.  Three scientific reviewers were also assigned to each proposal.  There were at least 30 other proposals that the other consumer reviewers dealt with.

When the time came to actually discuss the proposals in person, the program paid for my airplane tickets there and back, which left me paying for a baggage fee (which will be reimbursed later).  Naturally, the shuttle that was supposed to take me to the hotel broke before it could pick me up, so I ended up standing out in the cold (17F) and wind (26mph) for about 50 minutes waiting for the next one.  I was, suffice it to say, quite miserable by the time I made it to the hotel.  Fortunately, they'd flown me in a day early, so I was able to just crank my hotel room's heat up to 85 and roast myself back to a normal body temperature.

The next day, and each day after that, everyone was put in the same room, roughly 20 of us in total, and each proposal was discussed, one at a time.  There were microphones and special computers for doing the final review and critique process.  Everyone was remarkably polite.  What startled me most about the whole thing, I suppose, was how incredibly diverse everyone talked.  Everyone was fluent in English, of course, but there were German accents, a French accent, a really really British accent, a mild Brazilian accent, one or more Asian accents (I can't differentiate between Chinese accents and Korean ones).  From the US proper, there was at least one Texan accent, a very strong New Yorker accent, a Californian accent, and some subtler ones I couldn't identify because they didn't stick out as much to me.

Somewhat bewildered, I asked the organizer whether this was normal, and she told me it pretty much was.  So apparently Academia is just chocked full of diversity.  Or at least this sample of Academia was.  I wasn't expecting to have to sort out so many different ways of speaking!  It was a bit of a struggle.  Which isn't to say that any of these people were terrible or something.  I just normally have difficulties with conversations, and having to sort out accents in addition was an unexpected challenge.

Something cool, as an aside.  There were only 7 consumer reviewers for this year's iteration of research proposals, and one of them was Liane Holliday-Willey, the author of a book I reviewed  about a year ago.  Turns out she lives within an hour of where I live.  In retrospect, my reaction to recognizing her name was comical, inside my head.  I kept looking at her name badge in disbelief, thinking something like, "Wait, she's a live person?  And right here in front of me?  Really?"  Turns out she's pretty cool, and has a lot of good things to say in person as well as in her writing.  She was assigned to the other research panel, so I didn't get to chat with her a whole lot, but the conversations with her and the other consumer reviewers were rather enlightening.

Anyway, I have the contact information for her, a couple of the other consumer reviewers, and a few of the scientist reviewers also.  It's certainly not social-butterfly level networking, but considering my limitations and the relative shortness of the meeting, I think I did a pretty good job.  I am, however, going to have to make a lot of reminders to myself to follow up with all those people, because that is something I am demonstratively bad at.

This entry is backdated, because at the time of posting, I will be somewhere between South Carolina and Michigan on a hopefully not minuscule airplane.  (The plane that went between my home airport and DC's airport had 12 rows of miserably tiny seats.  If I can avoid that on the way out, that would be awesome.)  Either way, I'm getting up at 4:30 am to make it to the airport on time, so wish me luck.   

Monday, January 8, 2018

Reading the Research: The Role of Body Image in Health

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

In honor of the new year, and my personal distaste for new year's resolutions, today's article deals with an oft-ignored strategy for being happier and healthier.  Rather than chasing after an ideal body type, work with the one you have.

Quoted from the article, which is quoted from the professor who headed this study: "Consider what is really going to make you happier and healthier in 2018: losing 10 pounds or losing harmful attitudes about your body?"

She is not wrong.  Consider the image below.  On the left, the actual picture as originally taken.  On the right, the photoshopped version that was later published.

I chose this particular image because the person here clearly has my body type: the pear.  She is large in the thighs, and probably has pretty strong legs.  The photoshopped version strips her of this, narrowing her hips, shoulders, legs, and middle.  In pursuit of what, I'm not really sure.  Supposedly, beauty. There's a lot more out there where this came from.  Also, depressingly, this is not just a female body beauty problem. 

I used to have some really negative opinions about my body, and still somewhat do.  While I spent most of my childhood relatively oblivious to the beauty industry, the thousands of photoshopped pictures, anorexic models on TV, and perfectly fit movie stars have taken their toll.  My gut reaction, in regards to my body, is to despair, because I will never look like that.

It's not just that I'm having trouble losing weight (I am, and it sucks).  It's that even at my very thinnest, I literally do not have the correct body type.  Like the model here, I am pear shaped.  I have wider shoulders, wider hips, and heavily muscled thighs.  There is no surgery, diet, or exercise that can change the basic facts of my bone structure.  If my goal was to look like the photoshopped picture on the right, I would be forever trying to something I can never be.  

So this article preaches combating that mentality in variety of ways, but all aimed at the same thing: body acceptance.

Oddly enough, for me, body acceptance came in a different way.  A (much thinner) friend of mine commented that if you look at the kind of women found in erotic films and advertisements for men, they are not the idealized, anorexic thin models.  They're like the natural one on the left, much more often.

There's also this musical...thing... which is... certainly a part of pop culture.  A not polite part of pop culture.  Consider this your NSFW warning, I guess. 

Anyway, the opinion espoused in that song has been echoed, much more politely, by an acquaintance of mine over the course of a dozen years.  And perhaps that, more than anything else, has helped me come to terms with the fact that I'll never look like the magazine covers.

All that said, I definitely do need to lose weight before it destroys my knees, and it'd be better for my health overall if I could ditch some of the fat around my waist.  But valid health concerns aren't really what this article is aimed at.  It's aimed at destroying the cruel impossibility of attractiveness that the beauty industry has wrought.  Something for all of us, autistic or no, to keep in mind this year, because, as the article points out, people who feel better about themselves take better care of themselves, automatically.  

Friday, January 5, 2018

Looking Forward, Looking Back

Last year around this time, I wrote a Legwork and Life outlining my goals for the year.  I pretty much agree with most of the sentiments I put in last year regarding New Year's resolutions.  Resolutions, as a concept, have been so overmarketed and superficial, that the concept of making them strikes me as running from door to door, shouting from rooftops, "I'M GONNA BE AWESOME THIS YEAR!  LOOK AT ME BEING AWESOME!"  And then resolutions and the culture being what they are, when you mess up those resolutions, you just... sort of quietly stop trying and hope no one notices you're not being awesome any more.

Of course not everyone does New Year's resolutions that way, but overall the situation has given me a poor view of resolutions.  So, like last year, I'm simply going to list some goals that I would like to accomplish this year, and not call them resolutions, and not give up on them if I seem to be failing.

First, I'll review last year's goals and see how I did, though.

Looking Back at 2017's Goals...

1. (2017)  Rebuild and keep a buffer for this blog.  

Well, I did actually manage this for most of the year.  It got wrecked around October and I didn't manage to rebuild it since.  I think my general anxiety level has gone down, or that fact would have really driven me into a tizzy.  I added the Reading the Research section this year, too, which gave me an additional post per week to juggle.  While I don't regret adding the section, since the information there is important, it definitely made my job here harder.  Oops.  

Overall, I think I did okay on this goal.  I still need to figure out how to pace myself and manage a buffer, while being sensitive to current events and sudden interests on my part.  That's the downside of buffers.  You have lots of saved content, and it's generally good at any time, but sometimes simply adhering to the order you set things is detrimental overall.  It's easier to just let things post in the order you set them weeks ago, but.  Meh.  It's tricky, and it's a balancing act I need to work on.

2.  (2017) Exercise 3x/week.

Yeah, uh...  Oops.  Turns out it's really blasted hard to make yourself exercise 3 days a week when you don't love exercise.  The exercise programs get old, it gets cold and gross outside, the shopping mall gets too loud to walk in comfortably...    I did not do a good job on this goal.  After my parents moved here, I've been decent enough about 2 days a week exercise, sometimes 3 days a week if you count walking with my friend.  But yeah, I think it's probably fair to say this didn't happen.  It needs to, still.

There's a possible solution, though.  Chris and I have been looking into getting an exercise bike, specifically a recumbent one.  When I was in college, I would literally sit on one of those things and exercise at a low intensity for an hour or two while I did my homework.  I could probably pull off the same thing, only with a book, or my tablet, or a TV show, or something.

3.  (2017) Make some progress (any progress, really) on launching a career as an autism expert/speaker/writer.

This front has been pretty quiet, annoyingly, at least 'til the end of the year when the DOD's autism research program was like, "Hey, want to spend your December flailing and reviewing autism research?  We'll pay you!"  That is really not ideal, but I guess it is technically "any progress."  

One of the most major falling down points with careers like these is that you have to network.  It's a dumb thing, because I'm bad at networking (lacking social intuition will do that), and that means it's a lot harder for me to get the right connections to become well-known enough to make it big, or at least become known and respected.

Going as written, I guess I succeeded at this goal, but I'd like to do better.  I can get started by trying to make personal connections with the scientific reviewers I'll be meeting this weekend... 

4. (2017) Start the arduous and exhausting job of house-hunting. 
Well, pretty much nothing happened on this until, I don't know, December?  And the housing market here is still completely insane.  One of my friends informs me that she read that this is the toughest housing market for buyers in the US.  I guess this city really is growing pretty fast, if that's the case.  Anyway, we saw a few houses before we left for Christmas things, and we saw one this week, and I'm sure there will be more to come.

This goal gets checked as a success, as written.  An exhausting, bash-my-face-into-my-desk success.  Hooray...

Moving Forward in 2018...

So this year, I would like to:

1.  Create and keep a buffer for at least 10 months of the year.  Preferably the entire year after I rebuild the buffer.

Last year was a learning experience, as was the year before it.  Maybe third time's a charm, and I can keep a buffer going the whole year?  I'd like that, but if nothing else, 10 months out of the year is a reasonable, somewhat challenging goal.  This will entail me working very hard ASAP to rebuild said buffer, as I've got nothing right now.  But the buffer has been a good thing for my sanity, and allows me to worry less about deadlines and more about making quality content and information available.

2.  Finish the arduous and exhausting job of house-hunting, get moved into a house or condo, and stop having to give a crap about the whole thing.

This is hopefully manageable.  I'm not under the impression that I'll be able to find a perfect house in a market like this, but it'd be nice to get into one that both Chris and myself don't hate.  I think I've already complained a great deal in this blog about why I'm done with the apartment complex we live in right now, but in brief: roaches, nonexistent snow removal services, increasing rent, and loud neighbors.

3.  Become better at managing a social network, and network with several autism researchers in pursuit of increasing my chances at a career in autism, and if nothing else, helping nudge research away from "what causes autism" toward "what helps autistic people?"

This is basically my "make some progress on career" goal from last year, but more specific.  I already have a contact that I could be chatting with some here and there, but I sort've fell out of contact with her over the Thanksgiving rush, and it feels awkward to email her.  So maybe I should also take out a book on "how to network" while I'm at the library next...

I do have a head start on January 2017 Me, and that is that I'm taking the NAC, which improves my mood markedly.  So this should be doable.  I hope.

4.  Keep steady on the 2 days a week exercise with my parents, and find, buy, and use a recumbent exercise bike this year for the 3rd day per week.

Keeping with the trend of "better goals" this year, this is a fleshed out and more specific version of my exercise goal.  I should also add "Eat better" to this list of goals, but I don't want to overwhelm myself.  I think the exercise bike is likely to be a major factor in better health and fitness.  My parents' exercise room area is excellent, and has a near-full spectrum of basic exercise machines, but I'm always limited in the time I spend there.  So it'd be good to have a day where I just burn calories for a long time, or perhaps a few days where I just spend a half hour or something on there.

Anyway, wish me luck!  Hope your year goes well. 

Wednesday, January 3, 2018

Legwork and Life, week of 1/3/18

Happy New Year.  With luck, maybe this year won't be as soul-draining as last year, politically speaking... I've pretty much gone from "I don't watch the news, it's depressing" to "please don't talk to me about the news, I'm prone to fits of fury and weeping when politics are mentioned." 

Playing catchup from last Legwork and Life...

Christmas part 3 did occur, and while it was a lengthy affair, at least it was in the company of people that were all reasonably friendly and good natured.  The Star Wars movie left me feeling mildly bummed, for reasons I won't discuss due to spoilers.   But it was cool to see it, at least, among friendly people.  Overall it was a good trip.

Monday heralded the annoyingly long drive home, which ended up being about 14 hours even.  Normally it'd be a bit longer, as we like to stop, walk around a bit, stretch the legs, etc.  Unfortunately, it was bitingly cold and windy, and also I strained my upper back early in the car trip, which meant that moving around was anywhere from painful to agonizing.  That same scale works well for bumps on the road, acceleration and deceleration of the car, and any purposeful neck-turning that needed to ensue.  Y'know, like the head-checks that you need to do when changing lanes, to make sure you're not merging into another car in your blind spot. 

Needless to say, the drive was horrid.  I'm now desperately trying to decompress before I fly out again, on Saturday.  This has not been made easy, as house-hunting is still a thing.  I haven't slept well, due to not wanting to suffer the pain of rolling over and/or waking up when I do. 

Yesterday, I'd hoped that I might get the chiropractor to help fix my neck and upper back, in case there was something shoving my spine around could do.  I found out I was more or less grasping at straws.  The chiropractor basically okayed my regimen of ibuprofen, back massager-thing, and heating pad, and suggested cold packs as well.  That... is pretty much all he could suggest.  I was kind of hoping he could just shove my spine around and make the angry muscle quit whinging.  No such luck. 

The stiffness and soreness is wearing off, slowly, but not fast enough for me.  I am going to complain about it and whine about not being 30 yet until it's entirely gone.  I presume when I turn 30 this year, I'll have to complain about not being 40 yet.  I don't know, I haven't made up my mind yet.  I still have ten more months to decide, anyway. 

Oh!  Something I've been neglecting mentioning, I think.  Before I left, I finished all but three of the critiques for the government consulting job.  That was accidentally really good planning on my part, because the deadline for it was yesterday night, and I spent all of yesterday morning bashing my head on the remaining three.  I may have spent a good portion of the time complaining to a friend about the contents of those three, too.  Most of the content of those complaints can be found in last Friday's blog post...  But I got it all done! Roughly 12 hours before I needed to!  It's almost like I'm back in college.  I used to complete big assignments and end of the year projects in a similar fashion. 

I think the issue is probably that I focus better on something when it's done all at once, or at least in large chunks, day after day.  People talk about how it's good to do 15 minutes per day on a project, or half an hour, or something, and I just... I can't get into the mindset of a project in that short of a time, or if I manage it, I'm then out of time to work on it.  So I end up doing it all at once, and more often than not, a bit nearer to the deadline than it really should be. 

Anyway, wish me luck with the trip to (near) DC.  I'm going to have to try really hard to keep my temper when people talk about "curing autism" and how great it would be to do prenatal tests for it, and how the primary goal of autism research is to discover what causes autism.  The responses from the scientific reviewers strongly suggest to me that I'll be hearing a lot of that, if the glowing reviews of the studies I marked as "ewww..." are anything to judge by. 

Monday, January 1, 2018

Reading the Research: Dismantling the Medication Merry-Go-Round

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

Today's article is a far, theoretical hope for streamlining medical prescriptions for depression.  I've commented about my horror of prescription drugs for depression, I think, though I don't recall any particular post to link you to.  In brief summary: we don't really know why these medications work or don't, finding the right one is a matter of luck and perseverance, the side effects of some of them are truly terrible, and there are other, less risky therapies available. 

There isn't all that much to be done for the side effects thing... nor, right now, the lack of knowledge as to why specifically these medications work.  And at present, the US medical industry is very stuck on pushing pills for everything.  So alternative therapies, like LENS (neurofeedback) and dietary/gastrointestinal changes, will continue to fall by the wayside in the mainstream. 

However, apparently scientists are busily trying to find a way to make the medication merry-go-round be less of a luck-based thing, and more of a science.  You see, there are dozens of prescription drugs that can treat depression.  Finding one that works for you is the hard part. 

The study uses mouse "models" of depression, or specially bred lab mice with specific traits desirable to research... in this case, the tendency to be depressed.  I'm not overfond of these model studies, as I tend to think the results are dubiously translatable to people... but in this case, the researchers did actually try to make comparisons between their test subjects (mice) and actual live depressed people in their care. 

So basically, they think they've discovered specific reactions to each antidepressant, which indicate whether that antidepressant will be effective or not.  If they're right, they could simply match a patient to a set of specially bred mice, and test a dozen antidepressants at once on the mice.  If any drugs are particularly effective, the patient would try that first.  Essentially, if this idea proves effective, getting on the right antidepressant could stop being a merry-go-round. 

Given how many autistic individuals suffer from depression, whether that's from repeated peer rejection, the knowledge that we'll never be normal, messed up gut bacteria, or some other biological cause, having the ability to simply prescribe the right antidepressant the first time would be invaluable to a large percentage of us, and other people, who suffer depression.