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.