Friday, December 15, 2017

Constantly Juggling: A Summary of My Current Health Situation

I am now at a point in my life where I can look back and safely say, "I am doing much, much better now than I ever have been in the past."  I'm mentally a lot more stable.  My anxiety is way down from what it used to be.  My dysthymia (low grade depression) is well under control.  My head is much clearer and less foggy than it's ever been in memory.  I may not be able to take on the world single-handedly, but as things go, this is the best it's probably ever been for me. 

This success is due to a whole lot of things, which I thought I might as well ennumerate and explain, given that it might help you find something to try for yourself/your child/your patient. Keep in mind that I have to do all of these things, or my mental and physical health suffer.  It ends up feeling like a juggling act some days, with me as the main and only performer.

1.  Supplements (Vitamins, Brain Chemicals, and Detoxifiers, oh my)

This was a big one, which is why it's first.  My LENS-doctor has a masters degree in nutrition, so under her guidance I had various blood tests done.  They showed that I was severely deficient in vitamin D, zinc, and iron.   Those were just some basic tests, but I had to ask for them from my primary care practitioner specifically, and they had to be billed under my other diagnoses (dysthymia, unexplained weight gain, chronic fatigue...) to get them to go through.  

So naturally, I now take supplements for vitamin D, zinc, and iron.  The vitamin D one also contains vitamin K1 and K2, which help with absorption.  I also take a broad base multivitamin, and magnesium (which has a calming effect and is particularly helpful for autistic people).  Those are all the vitamins.  Adding those to my day has made me much more energetic in the mornings, less foggy, and less achey.  

Next are the brain chemicals in pill form.  There are two of these. First is GABA, which is a neurotransmitter and is responsible for calming the brain.  Human brains naturally make this neurotransmitter, but not necessarily enough of it for stable functioning.  The second brain chemical pill is melatonin.  I have trouble falling asleep and staying asleep, so by adding some extra melatonin, which is the brain chemical that induces sleepiness, I can manage that issue without issue. 

Last is the detoxifier, which is a new player on the scene but has demonstrated its usefulness so impressively that I have nothing bad to say about it.  The substance is called N-Acetyl-L-Cysteine (NAC), and it was originally recommended to me to ward off the ill effects of mold.  If I'm exposed to mold, my brain goes foggy, my depression ramps up, and I get snappish and anxious.  NAC binds itself to the mold spores and such in my system, and then flushes itself and the mold out.  We tested its efficiency when I visited my inlaws' 200 year old, mold-ridden house.  In their defense, it's really hard to keep something that old in sparkling clean, flawless condition.  

The results were very impressive.  Not only was I able to not be a depressed grump on the trip, I was even able to hold a conversation over a long period of time and handle the various oddnesses of not being in my own home with my own things and patterns.  This led my doctor and me to try it outside of moldy environments, and I've found it's shifted my mood climate from "vaguely grumpy" to "slightly positive."  For someone diagnosed with dysthymia, this is basically a godsend.  

The supplements brand I use for most of my vitamins and such is Designs for Health.  Their stuff is more expensive than the grocery store options, but it's also purer and far better formulated for a sensitive system like mine.  Sometimes, you get what you pay for.  With this brand, you do.  

Something to keep in mind when considering supplementation for helping autistic people is that peoples' biologies vary.  I seem to absorb iron, vitamin D, and zinc very poorly, to the point where simply adding foods rich in those nutrients would not help.  But not everyone is just like me.  You should definitely consult with a nutrition specialist, and consider blood tests, before starting on these.  

2. LENS

I think I used to define LENS with every Legwork and Life entry in the past, when they were called LENS and Life.  I've since quit doing so, and now I occasionally get asked what it is.  LENS is short for Low Energy Neurofeedback System.  It is, as the name suggests, a form of neurofeedback.  

If that's gobbledygook to you, that's okay.  Neurofeedback is a therapy that involves tracking your brain waves via electrodes.  There's active neurofeedback, where you have a screen in front of you and are trying to train yourself to do things with your brain waves as they're displayed in real time.  And there's passive neurofeedback, where you don't try to achieve anything, but observe effects during and after the therapy.

LENS is a passive neurofeedback technique.  In a typical session, I sit in a comfy chair.  Three electrodes are attached to me: two to my ears, to help stabilize the signal, and one to whatever part of my brain we're measuring and then poking.  LENS involves measuring and then slightly modifying brainwaves.  The theory is that by doing so, we're strengthening weak brain connections and weakening connections that are too strong, resulting in a brain that communicates much better, and therefore functions better.  Over the course of two and a half years, I can attest to its effectiveness.  It is now much easier to smile, to work with my emotions, and to adjust to changes in my daily routine.

LENS is a therapy that can be used on a variety of brain conditions and mental illnesses, from autism to brain injuries to depression.  It's most impressively effective with head injuries, because the patterns it's trying to change are relatively new ones.  On conditions like autism, or my decades-old dysthymia, the results take a bit longer to show themselves.  On the bright side, its success rate is over 75%.  

My personal LENS practitioner is Dr. Nicole Beurkens, who also has degrees in special education, nutrition, and clinical psychology.  I highly recommend her.  There are other LENS practitioners across the country and even across the globe.  If you're not in the Michigan are of the US, you can find a different practitioner here.

3. Diet Changes and Probiotics

Of course it came to this.  A lot of the food sold in grocery stores is junk, or full of junk.  Full of sugar, high fructose corn syrup, empty calories... I'm sure you've heard it all before.  Of course we all try to eat healthy, with lots of whole grains, fruits, and vegetables, and that alone is pretty hard sometimes, right?

Yeah.... so, it gets worse.  Did you know that dozens of chemicals, including various food colorings, are banned in Europe and Asia, but not in the US?  Some prime offenders are Red Dye No. 40, Yellow Dye No. 5, and Yellow Dye No 6.  So I have to avoid most artificially colored foods, which means saying goodbye to a lot of childhood favorite snacks, as well as some chips, pastas, and other colored foods.  

Still with me?  I am also avoiding most dairy products at this point.  Butter is still available to me, but cow milk, cheese, and standard ice cream are barred.  Why?  Well, there some evidence that dairy has detrimental effects on the intestinal tract, and that's especially true to autistic people.  On the suggestion of my doctor, I went dairy-free for a couple weeks, and then had cheese and a glass of milk.  The results were very enlightening.  I went from a neutral mood to an anxious, depression, snappish person in less than an hour. I can't summarize the science of why this works, but I'm not going to argue with my own personal experience.  

My doctor also suggested trying a gluten-free diet, which I am presently pretending I didn't hear because it's already hard enough to find things to eat when I travel or visit with other people, let alone adding that factor in.  Unfortunately, the same evidence that suggests avoiding dairy is good for autistic people also suggests that going gluten-free is a good plan, for many of the same reasons.  Arrrrrrrgh.  

On a happier note, I do at least have some help with keeping my gut in good shape and able to do its job.  Twice per week, I take probiotics.  I have two different types, which cover most of the common good bacteria that should be found in your gut.  For a system as sensitive to changes as mine, it's a good practice to routinely prop it up.  I use Theralac and TruBifido, both by Master Supplements.  These are the type you have to keep cold.  

4. Exercise

Yeah, I know, duh, of course exercise is good for you.  It's the most cliched sentiment in modern health.  Annoyingly, it's cliched for a reason.  I won't go into detail about all the regular reasons a person should exercise, like weight loss, muscle and bone fitness, skin health, heart health, and various disease chance reductions. You've heard all that over and over, to the point where you pretty much just tune it out.

Instead, I'd like to highlight what it's specifically done for me.  Some background: I hate exercise.  I was bad at gym class in school.  I had poor hand-eye coordination and pretty poor gross (full body) coordination as well.  I was not fast.  These things do not a sports star make.  I learned to hate the mile run, the yearly fitness tests, the mandatory participation in sports, everything.  

So when it came to picking up any form of standard exercise, like sports, or jogging, it was, suffice it to say, an uphill battle.  I found I needed to distract my brain from the exercise, or I would become sulky and anxious in short order.  

In college, I learned that I could do my homework while using the recumbent bicycle machine.  That was very satisfying, because it was killing two birds with one stone, and due to my particular genetic makeup, I can pretty much do low-intensity bicycling for hours.  I also re-discovered the video game called Dance Dance Revolution in college.  As a video game whose purpose was to get you to step or jump along to music on an exercise pad, it was sufficiently distracting and entertaining that I didn't mind the exercise component so much.  

So what did those get me?  Well, I noticed that after exercising, I seemed calmer, as if burning the energy in those activities somehow took it away from my brain's ability to be anxious.  I built muscle, of course, and that's helpful for lifting furniture and moving around.  But it also factors into how many calories you burn every day.  The more muscle you have, the more calories you burn... simply by existing.  Good times.  Extremely valuable for someone with a consistent weight problem and an anxiety disorder that never seemed to quit. 

There are a lot of different kinds of exercise out there, and not all of them are immediately thought of when the word "exercise" is mentioned.  Getting a job that involves a lot of movement, for example, has some of the same benefits as targeted exercise.  You can lift weights in the gym, or lift children on the playground.  You can go running outdoors, or use a treadmill at home.  You can join a local sports team for almost any game under the sun, including Ultimate Frisbee, fencing, and archery. 

5. Chiropractic Care 

Seems like a weird one to have on this list, doesn't it?  Usually you just go to the chiropractor if you have back pain, especially if it's related to a work accident.  What does it have to do with autism?  

Well, plenty, in some cases.  Your spine isn't just bones that need realignment.  It's also got the spinal cord woven delicately through those bones.  I tend to think of the spinal cord like a phone cord or a USB cord.  If it's frayed, or the cat's gnawed on it, or it's being pinched in places, it doesn't work very well.  The signals get muddled, messed up, or lost entirely.  

Headaches can ensue.  Intestinal distress can ensue.  Over- and under- sensitivities can ensue.  Because the spine is the main communication line between the brain and the rest of the body, anything that mucks it up can muck up a lot of things in the body.  

I started getting chiropractic care because I had tension headaches.  As a child I had very poor posture, and no amount of pointing it out or chastising me for it could change that.  It was tied in with my self-esteem, and the results were plain enough.  Sore knees, bad headaches (but not migraines) every week, and more if I was under a lot of stress. 

About a year of chiropractic care later, and I no longer have tension headaches.  In fact, I rarely get headaches at all now.  Due to getting their help, I've also changed out my pillow and raised my computer screens so that I look straight ahead rather than craning my neck down, which helps train me not to hunch. 

I can't personally speak to the other potential benefits I've listed, but I've certainly heard enough stories of allergies reversed, and there's at least one chiropractic center in my area that specializes specifically in helping people with autism.  

Afterword: Cured?

A lot of books that talk about these kinds of therapies for autism also like to use the words "cure," "restoration," "reclamation," and "healing," and make the implication that you can make your child's autism go away.  This is somewhat of a fabrication, and somewhat not.  The definition of autism is that there isn't a single definition of autism.  

I presently live independently.  I drive my own car.  I can make eye contact with a lot less effort and suffering than I used to be able to, and I can smile for a camera with relative ease.  I hold friendships with greater ease than I used to, and spend less time obsessing about small details and living in constant anxiety.  I struggle less with social interactions, and am much more flexible about my life and schedule. 

If I were to retake the psychological tests I took seven years ago, I can honestly say I would probably score very differently now.  I don't know whether I would still "score" as autistic.  Does that mean I'm not autistic?  

To some biomedical practitioners, the answer would be yes.  They see autism as strictly a medical disability, a collection of gut disorders, allergies, immune system problems, toxicity buildups, and other things.  Fix all those things, and now your kid isn't autistic any more.  Pat yourself on the back, keep up those new routines, and you've solved the problem.

I understand that mentality, but it misses the fact that autism does not necessarily involve that collection of medical problems.  I also come at the issue from the neurodiversity philosophy, which says, in conjunction with studies involving brain scans, that autism is also (or debatably, only) a brain condition.  My brain is actually wired differently than most peoples', and because of that, I think differently about things.  I do things in different ways than other people.  I react differently sometimes, too. 

My perspective is so alien and so different from most peoples', that I had to actually teach myself, across a decade and a half, how to get along with people effectively and efficiently.  I had to learn what small talk was for, and how to do it.  What things to say to people when someone they love has died.  When to not say anything and just be there.  How to recognize when people are getting bored of a subject.  Most of all, I had to spend a lot of time trying to understand how most people think, so I could see things from their perspective.  

Am I "cured?"  No, I don't think so.  My suffering is much much less.  I am less disabled in my day-to-day life.  But I am still autistic.  My thought process is still very different than others'.  I see things differently.  I do things differently.  In those ways, I am still different, and the word that describes that is "autism."  

So no, I am not cured.  In the sense I've explained it, I don't think a cure is even possible, and definitely not desirable.  I would cease to be who I am, if you ripped the autism out of me.  I am, however, much happier, and definitely less disabled now than I was five years ago.  

Wednesday, December 13, 2017

Legwork and Life, week of 12/13/17

A pattern has clearly developed in my daily life at this point in the year, I think.  It can be summarized as "running headlong from one deadline to the next."  There is not yet any screaming accompanying the running, so I think this okay, if not really desirable.  I'm making the deadlines, I just don't feel like I'm getting any breaks while I do it. 

A couple changes in my supplements lineup have occurred in the last couple weeks.  First, the N-Acetyl-L-Cysteine (NAC for short) has become a once a day thing.  I'd mentioned using this previously when I traveled to my in-laws' house, because they have mold somewhere in their 200+ year old house and it makes me a grumpy, sad, anxious mess.  Since I had such good results with it last visit, and since there's precedent for people with autism having shoddy biological detoxification systems, my doctor and I decided to try it once a day.

I have... since been more positive and calm, to the point where it has been undeniably noticeable.  Which, pretty much means it's had a huge effect, because I am really not sensitive to those kinds of changes, normally.  So, definitely a good change there.  I might end up upping the dose to 2/day while I visit my inlaws this year, and seeing if the results are good. 

The other changes were more scientifically based.  My blood tests show I am still somewhat deficient in iron, and definitely deficient in vitamin D despite the supplements I take for both of those, so the solution, for now, is just to take more per day.  This is going to entail having a bedtime snack from now on, because unfortunately the iron supplement, while chelated for easier absorption and digestion, still makes me sick to my stomach.  But I can look forward to increased energy levels, which is awesome as far as I'm concerned. 

Honestly, managing all these pills is kind of annoying, but if you'd told me three years ago that I would feel this good every day, I probably wouldn't have believed you.  I feel so much healthier, clearer-headed, and more energetic, which is really helpful to managing my life.  Astonishing what proper nutrition can do for a body.  I'm so grateful that my parents are willing to pay for the care of my LENS-doctor and for the supplements, because I surely couldn't afford this myself right now.  

I grew up knowing the importance of taking a multivitamin, and I took one every day in college, but it made me sick to my stomach, so I didn't like it much.  And I can't honestly swear to you that the One A Day/knockoff grocery store version did a whole lot for me.  Which, if everyone else had the same experience, might explain the "vitamin pills just make your urine full of expensive substances" thing I keep hearing about.

The vitamins and minerals in the supplements I take (Designs for Health, if anyone needs a good supplier) are specifically formulated to be easy to absorb.  Magnesium is an easy example.  I need a good amount of magnesium every day.  If you go to the grocery store, you will find plenty of magnesium supplements.  But if you look at their ingredients, you will find that they are almost invariably one particular kind of magnesium: magnesium oxide.  This form of magnesium does not absorb into the body well, and is functionally all but useless for someone like me. 

The other relatively common form of magnesium on the store shelves is magnesium citrate, which absorbs a little better but also acts as a laxative, which makes it dubiously useful unless you also have constipation issues.  I still have a bottle around just in case that problem comes back, but I suspect I'll have to throw it out soon, as I've had it for years now.  My magnesium supplement, while much more expensive than the supplements on the store shelves, is a formula called di-magnesium malate.  It absorbs very easily, which makes it ideal for me and other people with sensitive biochemistry and poor absorption rates.  The zinc, the iron, and the vitamin D supplements I take have similar stories to the magnesium story I've described.  This is because the government doesn't regulate the supplement industry very well, if at all, and so almost anything goes. 

I wish everyone could afford the kind of care and careful nutritional monitoring I'm able to have.  My mental state three years ago was like living in perpetual grey fog compared to what it is now. 

I didn't quite mean to go on this long about the supplements, oof.  I'll be brief with the rest.  I'm starting to snack on mixed nuts.  This has been a favorite habit of my dad's, and recent research suggests strongly that it supports brain function, giving you better memory, focus, and attention.  There's also separate research that suggests it reduces your rate of heart disease.  Mixed nuts are expensive, by comparison to candy and cookies, but like those unhealthy foods, their shelf life is almost forever.  So it's probably a good step forward.  There is now a bowl of mixed nuts at my computer, within easy reach, so the next time I'm feeling snackish I can lazily reach for it, rather than making plans to get cookies or something.

Beyond those changes, and the weather suddenly remembering that it's winter, things are keeping on keeping on.  I'm on track to have Christmas presents ready for holiday celebrations, which is exciting because the sooner I take care of all that, the sooner I can ignore that pile of stress.  I'm looking forward to not having to care!

Monday, December 11, 2017

Reading the Research: Video Games for Balance

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

Today's article talks about a successful use of a video game in teaching autistic people balance.  Balance is one of the things that tends to be affected when a person has autism, to the point that it can be very problematic in a person's daily life.  If you're constantly tripping and falling, you tend to take things with you, or hurt yourself and other people.  Even mild clumsiness can be enough to set bullies after you.  The article also insists that more severe balance and posture challenges tend to indicate more severe autism, which is an assertion I can't personally confirm.

Apparently the researchers linked together a Kinect (a device that uses a camera to track a person's movements), a Wii Balance Board (a device that you stand on and which tracks how you lean, and how much pressure is on each foot), and a computer to create a video game.  This game has the players stand in "ninja" poses and hold them for periods of time.  29 participants from ages 7 to 17 played this video game for six weeks.

By the end of the time, the participants had improved in their performance on the video game, but their balance and posture outside of the game had also improved.  This was true regardless of the participants' IQs, BMIs, and even verbal skills.  The video game used minimal words to convey how to play and throughout the game, which made it more ideal for low-verbal or non-verbal participants. 

That said, it wasn't a "one size fits all" program either.  Participants who were more rigid about adherence to rituals around meals or in other aspects of life didn't improve as much as those who weren't.  These also tended to be the more heavily affected participants.  Probably future iterations of the video game could be made to suit such individuals better.

Video games are a relatively new option for this sort of training.  I, personally, learned better balance via Tang Soo Do, which is a Korean martial art, and dance roller skating.  Both activities had other benefits besides the improved balance, but also required me to care about those activities, get transportation to them, and have the resources to afford them.  Autistic people are drawn to video games, it seems, which makes them an easy medium for therapies and other skills-based learning.  Video games are also relatively inexpensive by comparison. 

I don't particularly begrudge my time spent learning Tang Soo Do.  Every person born female should know how to punch without breaking their fists, how to get away after being grabbed, and how to ensure an attacker can't come after you once you've escaped.  Tang Soo Do teaches you those things, in addition to various punches, kicks, and even how to use some weapons.  That said, I probably never would have made black belt, even had I continued in the program.  My brain and my eyes don't communicate very well, which makes my reaction times rather poor.  I am uniquely unsuited for competitive sparring. 

Learning dance roller skating was a mite more punishing in terms of mistakes, but at least it didn't involve competing against other people.  It was me against my skates, to start with.  When I made friends with my skates, then it was me against the roller rink floor.  And finally, it was me against gravity.  My mistakes resulted in bruised legs, bottoms, and egos.  But I did learn, and fortunately my teacher was kindly, very patient, and encouraging without being pushy.  I can, if my flexibility allows, do various dance steps including spirals, spins, and jumps.  It does take a good while to warm up if it's been years since I last skated, though. 

At this point, if asked about my balance, I tend to say I have "the best bad balance ever."  I trip relatively often, over flat surfaces, my own feet, and tiny, insignificant bits on the floor... but I no longer fall, save once in a very great while. 

Had this video game been available, I probably would have tried it.  Most of the participants in the study found the balance game enjoyable, so if I'd been allowed to play, I probably would have.  My hope is that this game, and other educational games like it, will become much more common and accessible in the future.  I think video games like this can do a lot of good for autistic people and people with other disabilities.

Friday, December 8, 2017

Book Review: The New Social Story Book

The New Social Story™ Book, by Carol Grey, is a guidebook and example book for writing the aforementioned Social Stories™.  It's annoying as heck to keep having to look up how to type the TM symbol (™), so consider it a token of my highest respect for the author and her technique that I continue to use it throughout this review.  (As a side note, I have linked the 15th anniversary edition here, but I read the 10th anniversary edition.)

Social Stories™ are a method of teaching autistic people, especially children, what to expect from a situation and what their various options are.  They are meant to teach skills and options while encouraging positivity and self-esteem.  While I've never personally had Social Stories™ used to help me deal with situations, I can tell from reading this book and its massive examples section that they would have been really helpful, if presented in a way that didn't damage my pride. 

The first section of this book, more the introduction than the first chapter, given the page numbers (ennumerated in Roman numerals, rather than normal numbers), is a 71 page guide with 10 catchy rules for writing your own Social Stories™.  These are actually rather important, as they are far more ways to write a Story wrong than right.  These rules cover tones, perspectives, topics and subjects, vocabulary choices, tenses, sentence types, and even the balance of the types of sentences.


The rest of the book is filled with samples of well written Social Stories™, covering things like fire drills, self-monitoring, birthday parties, and feelings.  I could have, I suppose, skipped the remaining 200 some pages and still given a decent enough review of this book, but as there are a lot of ways to be condescending in a book like this, I did read through the entire thing.  Thankfully I did not find any condescending things to be annoyed at.  I did, however, find some of the example stories had useful concepts attached to them.

One of these is Fort Able.  The set of stories this concept is attached to describe it as a safe, secure place in your brain that is comfortable and full of all the things you like and enjoy.  Their description suggests that there are three steps to get into every Fort Able, and that it has different rooms for these positive, safe things.  A room for photos of favorite people and fun times, a room for favorite songs, movies, video games, videos, a room for scrapbooking anything else positive and enjoyable, and and a mental gymnasium for healthy thoughts to exercise and remember.  In addition, Fort Able is guarded by people who care about the person: so family, friends, etc.  The guards aren't just there to keep the place safe, they're also there to cheer you on when you succeed, and comfort you when you don't. 

Following the directions, I mentally built my own Fort Able, a large pod made of thick brushed steel, with a very comfortable chair in front of a computer with a trio of screens- one for each section they outline your Fort Able having, sans the scrapbooking thing.  I'm not really a scrapbooking fan, and the other categories seemed to have things covered.  I ended up envisioning one room, rather than several, because I find it annoying and difficult to envision walking between rooms, and remembering where each one is in relation to the other.  Chris (my spouse) and my parents are the only regular guards I envisioned, but the examples suggest a lot of my other friends and family would also qualify.  I like the idea of counting to three, envisioning your feet hitting each step one at a time, before entering Fort Able.  I'm kind of bad at keeping pictures and concepts like this in my head, but maybe this one will stay.

Another useful concept the book had to offer was its understanding of mistakes.  Autistic people are more prone to black and white thinking than most people, so mistakes can seem like shameful failure rather than the path to success.  I have, at this point, lost count of how many Social Stories™ have specifically addressed making mistakes, but each of them has pointed out that mistakes happen, should be expected, and are good opportunities for learning.  I didn't personally grow up with that mentality, and indeed, one of my close relatives displayed a lot of perfectionist characteristics, some of which rubbed off on me.  However, I think at this point in my life, I don't consider mistakes miserable failure so much as inevitable annoyances.  That's an improvement, but not nearly as good as not getting upset about mistakes at all.

The last major useful concept I noted was that the book introduced change as a thing that is normal, to be expected, and not bad or scary.  I wasn't really sure that could be successfully taught, but I presume, since it's wired into dozens of these Stories™, that it must be possible.  Considering our general tendency to really really hate change, it's probably a good thing to have in there.

In addition to all these, there were Social Stories™ about various safety situations, like wildfires, emergency drills, evacuations, etc.   And of course lots of different Stories™ for a regular school day, doing your homework, going to parties, and home situations.  I was amused to find the book even included a Social Story™ to explain the glossary section at the end. 

Read This Book If

You want to explore using Social Stories™ as a tool for your child, student, patient/client, etc.  This isn't really a book that can be mentally flipped for use by an autistic adult, it's specifically meant to guide someone teaching an autistic person in a practical, useful method of conveying information and skills to the autistic child.  The concept of Social Stories™ can be scaled up all the way to situations in adulthood, but as a relatively functional adult, I didn't find the included example stories useful beyond examining their philosophy.  I do think Social Stories™ would have been a great tool, if used well, for teaching me when I was a child, though. 

Wednesday, December 6, 2017

Legwork and Life, week of 12/6/17

Agh, it's December already.   I was told that I should try to enjoy November, since now I have to panic and flail about presents again... but I don't think I succeeded.  I think November just kind of bulled its way by, one deadline at a time, until it was gone.  Which is maybe a good way of summarizing life for me overall right now.

I mentioned last week that I got a new doctor and got some blood tests done.  Those came back early this week.  Despite the vitamin D supplements I'm taking, I still scored as slightly vitamin D deficient.  This is very impressive, because the vitamin D supplement I'm taking provides 1250% of your daily required vitamin D.  And also 688% of your vitamin K, for good measure, I guess.

I'm not really sure what to say to that, other than, "Daaaaaang..."  I can guess what my LENS-doctor will say, which is to start taking two of those capsules per day rather than one.  But I'm going to hold off until I get proper directions, I think.

The other worrisome thing is that my blood glucose levels were getting near pre-diabetic levels.  I looked up the health ramifications for pre-diabetes, and they're basically about what you'd expect.  "Exercise your butt off, stop eating so much sugar (you moron), and start eating healthier, or you're going to get diabetes."   I am... hopeful that my current lifestyle changes will head off any occurrences of diabetes, as I'm now exercising for over an hour, two days a week, and half an hour for an additional day. 

I'd also mentioned last week that I was hoping to get a little booklet to track my muscle group weights for exercising.  Turns out five of those things is like $3, so I got a pack and have set it up for future use.  I can now illustrate how ridiculous my muscle groups are.  My legs, for just plain lifting, can easily handle in excess of 300 pounds.  My abs, using the ab machine, managed 110 pounds last visit.  And my back handled 200 pounds with no apparent complaints.  My arms, on the other hand, found 70 pounds challenging on the pulldown bar, and a mere 40 pounds difficult on the pushup machine.  At this very moment, I am incapable of doing a single standard pushup.

I'll track these weights as I continue using the workout facilities at my parents' retirement home, and perhaps eventually my arms will stop being about as strong as a wet noodle.  But I doubt it.  Genetics gave me this incredible imbalance of muscle strengths, I kind of doubt it's going to politely change its mind if I ask nicely.  (I say it's genetics because my father and my brother both have this exact same imbalance of muscle strengths.  They had it worse in gym class, though, because boys are supposed to be strong in the arms.)

The last thing for this week is that the materials for the government contract are finally up.  I've been doing a lot of nothing other than flailing and panicking, because I forgot to take my supplements two days in a row.  Not my best moment.  But hopefully I can get started on this job soon.  It sounds like there's less than 15 things for me to look over and write critiques of, which is awesome because I was expecting 22 or so.  Regardless, I have to get started soon.  Maybe after I finish reading this webcomic... 

Monday, December 4, 2017

Reading the Research: Arrest Rates and Disabilities

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 gives us a grim warning about interactions with the police, and highlights the needs for training for both the police force, and the populace in general.  Firstly, according to this study, any given person in the US has a 30% chance of being arrested by age 28.  That's nearly a third of the population.  Does this seem problematic to you?  It kinda does to me.

Now, let's add having a disability into the picture.  Your chances of being arrested before age 28 are now 44%.  Let me underline that: you are nearly 15% more likely to be arrested if you have kind of disability, be that an emotional, physical, cognitive, or sensory disability.  Your chances of being arrested before age 28 are now close to half.  One out of two disabled people is likely to be arrested.

Also, God himself help you if you happen to be black.  The arrest rate for black men with disabilities is 55%.  The article naively terms this "the disability penalty," which I think is just adorable considering arrest rates for African Americans in general.  The researchers, naturally, consider this a problem and suggest police training should include a stronger focus on de-escalation, minimal use of force, and understanding implicit bias and structural racism.

And me?  Let me summarize my interactions with the police.  I attended the miserable failure called the DARE program in three different school systems, and I've been pulled over four times in my life.  Once for a speeding ticket.  Once for having a headlight out.  Once for not moving out of the way fast enough to suit a police officer, and getting ticked when he shone his brights in my face.  Once for having an out of date registration sticker on my car.

Of all those interactions, two of the officers struck me as dutiful, well-meaning, justice-driven officers.  The first was the dead headlight.  It was near midnight in a suburb of Detroit, on New Year's Eve.  He pulled me over, merely meaning to address the problem, and I had the mistaken impression that I should get out of my car to speak to the officer.  He did not take it well.  I have no doubts that if I had been male and black, I would have been shot.  Or at least loudly threatened with a drawn gun.  I am female and white, fortunately for me.

Once he calmed down, the officer was nice enough, explaining to me my mistake and even commenting that the city listed on my driver's license was where he was from.  I did not get written up, presumably for a lot of reasons which included, "cooperative, not drunk, bigger fish to fry this evening."  The second was the speeding ticket.  That was a pretty short interaction.  The officer seemed polite enough, and I wasn't going to dispute the matter- I had been speeding, albeit not in a dangerous fashion, and I really just wanted him to go away.  

The third interaction was less pleasant.  The officer who noticed my expired registration sticker didn't care what I said or felt, he just wanted to write me a ticket and get on with his life.  Which was exactly what he did.  

The last interaction... kind of took the cake, and it's what I remember when asked about the police.  I was driving to another city for work.  It was before the sun rose, making it rather dark outside still.  A car zoomed up behind me in the passing lane, so I started looking for a space to get over.  I apparently did not do so fast enough, because the car flashed its brights in my eyes repeatedly.  I made a "go away" motion, which was not taken well, and the lights went on.

When I pulled off, the officer put this massively bright, painful light on me, causing me to hunch and squint in pain.  He then proceeded to swagger, yell over me aggressively when I tried to say anything, and demand everything he wanted loudly and arrogantly.  I was cooperative and polite, but he didn't give a crap, having decided I was a troublemaker.  The blindingly painful light stayed on my car, despite my repeated requests for it to be turned off.

Officer Sunnuvabitch had nothing he could actually write a ticket about, thankfully, so all I have from the encounter is an ill-will towards cops in general and some personal evidence that screenings for who can become a cop and who can't are clearly not sufficient.  As far as I'm concerned, Officer Sunnuvabitch belongs in a rehabilitation program for violent and aggressive sociopaths, not toting a gun and wearing a badge. 

The DARE program I mentioned above was a miserable failure, statistics-wise.  It (accidentally) taught neurotypical children that drugs were for older (cooler) children, which naturally did not end well.  As I'm not neurotypical, it didn't have quite the same effect on me.  I listened soberly, and not knowing I should be distrusting the police, was sufficiently warned off drugs so as to not try them.  I was, however, not offered a chance to do so until I was 19, so I'm not really sure that's a success.

I mention the DARE program here because one side effect it had was introducing police officers to children.  I wasn't really reading body language at the time, but in retrospect I think those officers were probably pretty uncomfortable.  When you're used to handling what you see as the worst of humanity, and suddenly you have to manage children... it's maybe not surprising the whole thing was an awkward experience.

I don't recall particularly liking or hating the police officers that came to teach our classes.  But I do recall their analogy for divisions in humanity.  The policemen explained that people fell into three categories: sheep, wolves, and sheepdogs.  Most of humanity was sheep- not aggressive, not harmful, simply needing guidance.  Some of humanity were wolves- aggressive, dangers to society.  Those were the criminals.  And some of humanity was also aggressive, but was trained to protect and serve, using those instincts for the safekeeping of the sheep.  Those people were the police.

I can't imagine the police really think of themselves in those terms, and it was just a illustration to get a bunch of 4th graders to understand the police a bit better.  But remember that last interaction with Officer Sunnuvabitch, I kind of wonder if the comparison isn't more apt than it was meant to be, and whether the cops know they routinely invite wolves into their sheepdog clubhouse.  That, or the sheepdogs go wolf after awhile and no one does anything.

Obviously, I haven't been arrested.  That is because I am still relatively verbal, even while stressed out, and because I am white, and because I am female.  Change any one of those variables, and I fully expect, given my experiences, that I would have ended up with handcuffs, or even shot.  The police do not know how to deal with us, they consider anything deviating from "normal" threatening, and in some cases, shoot first and ask questions later.

I have nothing happy to say here, so if you are autistic/have disabilities, you might want to consider carrying this card around.  If you're a caretaker, parent, etc, you might want to consider adding that card to your child's wallet or purse, and teaching them to present it slowly and carefully when interacting with the police.

If you're a cop or other emergency personnel and would like to speak to me on how to improve your training program, please email me at therealisticautistic(at)gmail(dot)com.  I recognize most police aren't Officer Sunnuvabitch, and I would like to understand the police and other emergency personnel better.  More to the point, I would very much like you to understand me and other autistic and disabled people better, because these statistics are unacceptable.  Together we could help stop the needless deaths.  

Friday, December 1, 2017

Book Review: Relationship Development Intervention with Young Children

Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD by Steven E. Gutstein and Rachelle K. Sheely, is a handbook of activities for young children, using the RDI (Relationship Development Intervention) method.  The RDI method is geared towards teaching social skills in context of their purposes, with a focus on developing and maintaining relationships.

So, say you have a child that doesn't look at the people they're talking to.  This is a problem, because neurotypical people assume you aren't paying attention if you don't look at them while you talk.  (It's also a problem because some nuances of communication are non-verbal, but it's worth pointing out that it's a really arbitrary requirement from my perspective.)  Some programs would take this hypothetical child and try to teach them eye contact directly.  85% looking at the person you're talking with, 15% looking away.

That isn't good enough for the RDI folks.  Instead of simply teaching the skill, they teach the foundations of that skill.   To teach eye contact and paying attention to the person you're talking to, they make the environment and play require that eye contact.  If the child doesn't pay attention, the activity pauses, restarts, or ends depending on the directions.  This style of teaching is potentially a really good idea.  It's a more natural than teaching by rote, and theoretically a more effective way of teaching social skills. (I have to say theoretical, because I've never seen statistics on the subject.)

This book has activities to teach attention, cooperative play, flexibility, voice volume, hand-eye coordination, expression-reading, emotion-recognition, vocal tone recognition, give-and-take conversational skills, etc.  Reading through these, I didn't really have objections to the skills specifically chosen.  The same is mostly true of chapter 2, where they describe their components of relationships.  I did take some exception to the first criteria, which was "Enjoyment" and insisted that "Friends must be enjoyable, exciting companions."  I'm not sure I've ever been an "enjoyable, exciting" person.  But perhaps the book is specifically referring to friends in childhood, which might explain why I never had friends at that age.

I had a really hard time getting into this book.  It started on a trio of bad notes.  The first was the introduction quote.  Y'know how some people put dedications to people or favorite quotes at the very front of a book, before even the introduction section where the book itself is discussed?  They're usually inspirational quotes, or at least amusing ones.  The quote in the front of this book is a Bible verse.  Specifically, it's a Bible verse from Ecclesiastes.  Otherwise known as the book of the Bible that discusses, in great depth, how everything from riches to wisdom to hard work is pointless, because everyone dies and everything is a waste of time without God.

Now, I actually like Ecclesiastes because I'm weird like that.  But this quote is just a little snippet talking about how two people are better than one, because when one falls the other can help him up, and feel-good stuff like that.  But as a reasonably intelligent, somewhat educated human being, I really have to take exception to a book that purports to be full of helpful advice, quoting from the most depressing book in the Bible with blatant disregard for the rest of that book's contents.  So that annoyed me.

The second thing that annoyed me was the book's promise of results, with apparent disregard for the child that goes into the program.  There is literally a list of "social changes" that you will apparently, without fail, see in your child assuming you do the things in this book.  I don't know about you, but I've found, personally, that people with autism vary widely, and expecting a single program, even an excellent and relatively flexible one, to magically produce the same (exceedingly idealistic) results in every autistic child it's applied to... well, it seems arrogant and absurd, frankly.

The last thing that annoyed me at the start of reading the book was its language choices.  The book is meant to be used by parents, teachers/special ed teachers, and therapists, but the language used is pedantic and formal.  I found it cumbersome to understand, and this is coming from someone with a BA in psychology and a well-practiced skill in reading...  I don't envy any parents, particularly ones that aren't college-educated, the experience of trying to read through this book and adapt the activities for use at home. 

That said, a lot of the activities could probably work reasonably well, if used properly.  The earliest ones seemed to rely strongly upon the "Coach" (their name for the parent, therapist, teacher, etc) and their ability to bluff (or be really good at taking on and projecting) their emotions. The activities are made fun, not because they're actually fun, but because the Coach is instructed to smile, laugh, and engage in "fun" behaviors.

The activities work their way toward teaching the child that interaction, especially interaction with their peers, is fun.  I don't think I've ever seen the word "joy" printed so many times in such a dry context.  I can only hope these methods really do work, and in the long term, because the way I tend to approach interactions is not at all with joy, and more with a general cautious neutrality.  Sort of the way you approach a friendly but inexplicably venomous dog.  It probably won't bite you and cause you suffering, but some days you just really don't want to take that chance.

My only other concern was that the activities listed didn't seem to account for an comorbid problems, particularly sound sensitivity or touch sensitivity.  The earliest activities seemed to suggest tickling and roughhousing as "fun" and "enjoyable" activities with children.  And I can tell you I have hated being tickled since I was quite young, so that really wouldn't have worked well.  I can't speak so strongly for roughhousing, but considering the fact that I was bullied quite young, I can't imagine I'd like it all that much more.  Preusmably situations like mine would be accounted for by a therapist with more training than simply this book... but I do wonder what their tactic would be when someone with sound sensitivity covers their ears and curls up at the first sign of other children and their loud, shrieky noises.

Read This Book If

You want a primer for creating and running RDI (Relationship Development Intervention) activities for a young autistic child.  This book is pretty much what it says in the title, and that's it.  It's a very specific form of social skills teaching, and not a style that's intuitive in the slightest.  The bones of the RDI philosophy are mentioned in this book, but if you want a more thorough explanation, you'll have to look elsewhere.  I am somewhat dubious of the book's usefulness to the average parent, due to its stilted language.  Especially a parent that's already overwhelmed with raising a more heavily affected autistic child.  But a special education teacher or a therapist might use this book to work with a parent reasonably effectively. 

Wednesday, November 29, 2017

Legwork and Life, week of 11/29/17

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

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

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

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

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

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

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

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

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

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

Sunday, November 26, 2017

Reading the Research: Physical Health and Social Skills

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

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

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

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

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

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

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

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

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

Friday, November 24, 2017

Book Review: Iris Grace

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

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

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

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

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

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

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

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

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

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

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

Read This Book If

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

Wednesday, November 22, 2017

Legwork and Life, week of 11/22/17

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

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

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

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

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

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

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

Monday, November 20, 2017

Reading the Research: School Experiences

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, November 17, 2017

"Colorblindness", Respect, and Person-First Language

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 15, 2017

Legwork and Life, week of 11/15/17

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

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

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

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

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

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

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

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

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

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

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

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

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