An Open Letter to Autism Research Scientists

This open letter comes about because I've been reviewing research applications for the DOD's autism research grant program.  As I am restricted from putting my precise feelings to paper by various guidelines, I'm going to settle with summarizing them here, and then spend the time formatting my objections according to the government's guidelines.

I can't, according to the terms of the job, discuss anything specifically found in these applications I'm reading... but I don't have to, because I have a lot of things to say about the general content and focus of them... 

Dear Autism Researchers,

Please, please, please stop using overly obtuse language in your research papers and applications.  I recognize you have specialized concepts to convey, and those things have names, but there's a difference between conveying concepts and using words like "elucidate," "bioenergetics," and "sensorimotor" all in the same sentence.  There is also a difference between trying to convey a concept quickly, and inventing or using unnecessary acronyms.  Seriously, sounding like you swallowed a dictionary and are now throwing it back up onto a paper does not make you look smarter.  It makes you look pretentious.  It makes you look like your ego is the only thing that matters to you, and your research is just a vector for showing off.  This is triply true when you're writing a lay abstract, which is meant for non-scientists. 

Oh, I know, "It's just the style of how papers are done!"  Well, let me ask you this: Are you, or are you not, people dedicated to advancing human knowledge and discovering new, better, different ways of doing things?  If so, why are you making it harder for everyone, including other researchers, to understand you?  You should also keep in mind that your research is no longer sequestered in your hallowed institutions and universities.  Parents of children on the autism spectrum read your papers, and autistic people like myself do as well.  These are our lives you're researching.  We want to understand what you're doing, too, and we shouldn't need a PhD to do it.  Stop making it harder for us!  Autism may seem like an intellectual puzzle to you, but it's a difficult reality for us, and the more we can work with you and your research to improve the world and our lives, the better.

I've said we need you, and that's true.  Researchers are the driving force behind progress toward a better world for everyone.  But you should also keep in mind that you need us.  Talk to us.  Learn from us.  We know autism like you never will.  While you fiddle with your animal models, your mitochondria, and your genetic patterns, we are living and suffering and thinking about all of it.  We have ideas for research, too, and you are missing them by spending all your time in laboratories, with each other, in academic echo chambers.

One very specific idea most of you keep missing is that the question "what causes autism?" is now unimportant when placed beside the vast and desperate need for the answer to, "what helps people with autism live better?"  You've had more than 20 years to research "what causes autism?" and the underlying mechanisms, genetic factors, environmental factors, etc.  You still don't have solid answers.  The average age of someone on the autism spectrum is now 18.  That is the age where we either start into the real world, or we start falling through the cracks because our support services through school ended.  Guess which of these options happens a lot more?

Quit trying to find out what causes autism.  We, the autistic community, already exist with autism.   Even if you found the "what causes it" tomorrow, it won't undo our suffering, or improve our lives in any real way.  We care about getting effective therapies for our problems.  We care about having good social supports, and programs to help us get jobs and have social lives.  I will literally yell this from rooftops if I have to, and some of you are going to get an earful when I get to Washington D.C. this January.  Try to listen.  I will try to be polite and listen to you in return.

Speaking of politeness, could you please try not to refer to autism as a disease?  I, personally, am fine with the word "disability," though it misses the fact that autism has also given me strengths.  I've seen some researchers use the phrase "Autistic Spectrum Conditions," which I found interesting, and perhaps that would be the most respectful way to refer to us.  You see, while most of you are busy training magnifying glasses on all the disabilities and problems autism can come with, we've built our own culture and understanding of autism.  You just haven't been listening to us.

To some of us, autism is not an ailment we suffer from, it's a condition that is fundamental to who we are.  We've built communities around it, and understanding it and ourselves.  We tend to have some good traits in common, such as honesty.  We tend to value expertise and skill.  You might, in fact, consider autism our cultural heritage, in that sense.  Think of it like how African American people have a cultural heritage.  So some people, myself included, get a bit irate when all of that is dismissed as a "disease."  Particularly if the word "cure" comes into the picture.  "Healing" and "reversing" and "erasing" are really not much better.  Please be respectful of the people you're trying to help. 

Sincerely,
Sarah Frisch
The Realistic Autistic

Legwork and Life, week of 12/27/17

Merry Christmas (or happy holidays, if you prefer).  I hope you had a decent set of holidays so far.

I started my holiday season rather badly, though it seems to be improving by now, fortunately...

The "started badly" refers to just before Christmas #1.  We have three Christmases this year, the first of which was on the 22nd.  That morning, my support tablet broke.  Not because I dropped it, but because something fell on it.  I'd brought it to the gym, where I exercise with my parents, and someone had balanced a weight somewhat precariously on a machine.  I hadn't noticed it, so I set my tablet down to use the machine... and then the weight fell, smashing the screen right through the protective screen cover.

I've written, in the past, about what losing my tablet does to me.  Longtime readers will recall these entries, where I talk about how much of my life and sanity balances on having it around, so I don't get lost while driving, can remember my appointments, relax with music or silly phone games, or simply check my email or update my blog on the fly.  Without those things, my quality-of-life degrades significantly.

This incident was particularly upsetting to me because the last thing we need right now is another expense.  House-hunting, closing costs, inspections, and even putting down an offer, are all expensive propositions.  So having yet another cost added on top of this, after all the effort we'd gone through to protect this tablet, was intensely frustrating.  Never mind that this tablet was supposed to be a back up tablet, just acting as the primary tablet until we could afford to buy a better one.  For this one to break, and so soon... was just adding insult to injury.  So I basically just kind of sat there and cried for a few minutes, which is generally the last thing I would want to do in public.

That pretty much ended the exercise session, and after considering the situation, I moved the offending weight away from the machine, where it wasn't doing any good anyway, and into a corner, where it couldn't drop on any toes or electronics.  Chris and I then left to mull matters over.  Or, I guess, for me to mull matters over, because his very first spoken thought was, "we need to replace that, it's very important to you and your quality of life." It took me longer to come around, because this is the fourth tablet in 6 years, which is a lot of money even if the breakages haven't been my fault most of the time.

I wasn't even close to fully recovered from that incident when Christmas part 1 ensued.  My uncle and aunt were in town, having traveled from Boston, and my grandmother got a ride to my parents' place, where we all gathered together.  Mostly the afternoon and evening was spent chatting.  Very much a neurotypical event.  I was able to hold together well enough to manage a conversation, particularly since no one gave me grief about trying to put my life back together.  (I spent a large portion of the time there desperately trying to configure my replacement tablet as quickly as possible.  Getting the settings right, then finding and downloading all the apps, then telling each app who I was, then setting up the location of the apps on the tablet...  it all takes time.  And looks very antisocial.)

Anyway, dinner ensued afterwards, which was tasty.   I assume the event was a success, as everyone except me seemed reasonably happy at the end of it.  I pled a brutal headache, which was quite true, and apologized for being out of sorts, and people didn't seem to mind, so that basically ended Christmas part 1.

Between Christmas part 1 and Christmas part 2 was a very long road trip.  Chris and I rotate driving these days, with breaks to get out, stretch, and walk around a bit.  It was still a really long trip, but at least we made it.  No thanks to the winter storm that followed us all the way to the outskirts of our destination.  That was the most interesting thing about the trip, though, thankfully.

Christmas part 2 was just yesterday, with Chris' immediate family.  Both of his brothers were in attendance, and while it wasn't nearly as organized as my family tends to be, it was no less cheerful for that.  Chris' mother has made lots of efforts to make me comfortable, which is very thoughtful of her considering the strain of the travel and the loss of my tablet.  I'm currently hiding in the bedroom set aside for us, which has three of those silly Himalayan salt lamps that are supposed to clean the air, plus an actual machine that cleans the air.  The room itself is kept quite warm, too, which is a kindness as the rest of house is almost invariably freezing.

The usual outpouring of presents ensued, which included generous portions of candy, cookies, and snacks.  I'm trying very hard not to eat myself into another 10 pounds of fat on my thighs, but it's really difficult.  And of course there's been plenty of food, pretty much all of it delicious.  I got to walk people through how to make some modular origami stars, as well, which resulted in some pretty decorations.

Christmas part 3 is an extended family gathering for Chris' side of the family, and should ensue in a few days.  There are also plans to see the new Star Wars movie, and of course the drive home near New Year's.  Should be interesting.  

Reading the Research: Communication Via Smell

(Merry Christmas.  Hope the holidays treat you well.)

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 deals with a form of social communication most people take entirely for granted: smells.  This is kind of an odd study, but it's interesting, so bear with me.  The researchers wanted to see how autistic people and normal people reacted to two specific types of scent communication. 

For those entirely unfamiliar with this line of research, like myself, apparently fear has a smell, as does relaxation.  The effect is measurable, but the scent itself is apparently not identifiable or recognizable by a casual sniff.  People react to it all the same, however.

The subjects were exposed to two different sweat smells: one collected from people learning how to skydive, and thus laced with fear, and the other collected from people who were merely exercising, and thus calm. 

While I would have expected the autistic participants of the study to be oblivious to the "scent meanings" in the sweat smells, something more interesting happened.  Instead, the autistic participants received exactly the opposite message.  The fear-laced sweat made the autistic participants calmer, and the "calm" sweat made them more nervous.  The researchers suggest some pathways were somehow reversed in the brain development of autistic people.

This brings to mind some of the stories John Elder Robison wrote about, where he commented that he was a good person to be around in a crisis.  While other people would get stressed out and angry or afraid, he stayed calm and did reasonable things, like calling the police, assessing how badly people were injured, etc.  I now wonder how much of that ability to keep calm and be reasonable was because of this effect, the internal misreading of the smell of fear. 

Naturally, it doesn't really matter: the people he helped were helped, regardless of why he was able to do what he did.  And perhaps this tendency makes autistic people rather valuable in terms of emergency services and similar situations.  

Book Review: Healing Our Autistic Children

Healing Our Autistic Children: A Medical Plan for Restoring Your Child's Health, by Dr. Julie A Buckley, is a cross between a "my family's story of autism" book and a "this is my professional opinion on how to treat autism."  I've seen plenty of the former, and at least a dozen of the latter, but not a cross between them 'til now.

The author is a pediatrician, and of course, the mother of an autistic child.  The book itself is more heavily slanted toward "this is my professional opinion on how to treat autism."  Interestingly, it comes with a personal look into how biomedical doctors are viewed and treated by other doctors.  (Spoiler: not well.)

This is perhaps unsurprising, as the neurodiversity movement and much of medical world views autism as the result of a brain difference (or disorder, depends on who you ask), and only that.  Biomedical doctors tend to view autism as a medical problem, and only that.  Both sides think the other side is deluded and wasting resources better spent helping autistic people using their methods.

I tend to read these biomedical books with a certain amount of annoyance, tempered with patience.  Words like "healing" and "reversing" and "erasing" are just ways of avoiding the word "cure."  They do that because saying "cure" around the neurodiversity community tends to produce rather rabidly unfriendly responses.

To understand why that is... imagine you could go into someone's genetics, and change their genetic heritage.  You could turn an African American person into a white person.  Now, it's well-established that black people in the US get a really raw deal.  Words like "school-to-prison pipeline" and "racial profiling" and "police brutality" come up pretty often.  Now, if you offered the African American community the chance to become white, what do you think they'd say?

I'm not saying every last black person in the US would say no, and possibly rudely.  Some autistic people do want to not be autistic, especially if they suffer a lot from complications relating to it.  But to my mind, it's kind of the same question.  Asking "would you like to be cured?" is like asking someone if they would like part of their culture and personal identity ripped out of them.

Regardless of the exact cause of autism (still undetermined after dozens of years of research), I do think that being autistic is an identity thing, at least as much as it is a disability.  That perspective would likely horrify the author of this book, who likely defines autism as "all the gut problems, food intolerances, metabolism problems, and social difficulties my child/patient has to deal with."  I've commented on this tendency before.

The truth, as it often ends up, is probably somewhere between "autism is the differences in my brain and my personal culture" and "autism is a medical problem that needs to be cured."  I tend to favor, "Autism is a set of brain differences, no two quite the same, and is a culture as well as a diagnosis.  People with autism often have various health issues, depression, anxiety, and social difficulties.  These problematic things should be treated for best results, but the culture around us should also change to accept us, rather than us having to always change to fit in."  Which covers both camps, but satisfies neither.  I've been told the best compromises make no one happy, so maybe I'm winning?

Anyway, the author has a gift for metaphor, and she uses it well in service of describing her preferred treatments for autism.  These include supplementation, killing off any yeast infections, adopting the gluten-free/dairy-free diet, use of hyperbaric chambers, and chelation if needed.

I've discussed supplementation recently, so I'll leave that one alone.  I don't think I've ever commented on yeast infections, though.  I take probiotics regularly, and one of the things that does is keep a particular type of yeast, candida, under control.  Apparently people with autism can have a massive overgrowth of candida, which has disastrous effects on the intestines and the body in general.

The gluten-free, casein- (dairy) free diet is... kind of hard pill to swallow for most people.  Gluten is in most breads, grains, cereals, pastas, etc.  And dairy is in cheese, milk, ice cream, yogurt, etc.  Now, just imagine having to cut all of that out of your diet, all at once.  That's where this book recommends you start.  It has good reason to do so, and the author explains in decent enough detail.  I myself have gone mostly dairy-free, with good results.  I am still flatly refusing to try going gluten-free, though, because of how much of an intense headache it would be.

Hyperbaric chambers are those high pressure chambers they use to treat the bends in divers.  They help the body re-oxygenize at a much higher rate than normally possible.  This isn't the first book I've read that suggested they have good effects for autistic people and their parents, and it probably won't be the last.

I really don't have a decent opinion about chelation. There's a lot of conflicting stories being tossed around about its effectiveness and its danger level.  I would tend to suspect that it's a medical procedure, which can be dangerous to anyone under the right circumstances, and that it probably shouldn't be messed with if you don't know what you're doing.  This book has a guide to chelation, though it suggests it only if everything else isn't working as well as it should be.

The book's format is such that, when you go to see a pediatrician for your autistic child, you would take this book with you, having read the appropriate chapter.  It's structured around six doctor visits, in about as many chapters, and you can point to the various scientific descriptions, or read from parts to the book, to hopefully help your doctor understand what it is you want and why.

Woven in with all that are stories of the author's own child, and several other children she's treated in the course of her practice.  She seems to regard them all fondly, and as individuals rather than problems to be solved, which is points in her favor if you ask me.

Read This Book If

You're a parent of an autistic child, and you're interested in a primer on the basics of biomedical autism treatments.  This book is that, along with some personal stories and some very well-crafted metaphors to explain the complicated science.  It's fairly approachable, combining the standard "my family's story with autism" with the other standard, "my professional opinions about autism treatment."  It leans more towards the latter than the former, but explains its aims plainly and without being over-dramatic or pushy.  The author genuinely wants to help you by laying out what she knows, in a clear and digestible fashion.  

Legwork and Life, week of 12/20/17

The running from one deadline to the next continues!  It is now accompanied by slight whimperings and the occasional whine, but we have not yet descended into full-throated screams.  I'm hopeful that I'll manage Friday's entry before Thursday evening this week, but between the various last minute shopping, house-hunting, and the government consulting job, I'm feeling a bit pulled in all directions.

I'm almost done with my shopping list, which is excellent because we leave for CT on Saturday and that kind of makes a hard deadline for finishing that.  At this point I have just two presents left to buy, I think, and one of them I have no idea what to get, and the other needs to be bought about a day before it's actually given for best results.  I also have two sets of presents to drop off at their new homes, and another couple will politely send themselves when it gets closer to Christmas proper.

Maybe next year I should make a spreadsheet of people I'm giving gifts to, to help track them and make sure I don't forget anyone.  I keep having minor heart attacks when I remember someone I haven't shopped for yet and really need to to be socially appropriate.

I mentioned house hunting in the first paragraph.  We (Chris and I) are finally buckling down and doing some of that, with hopes to get out of this crap apartment complex and into a house or condo by the end of January.  Normally you'd take weeks or months doing this, but houses in my particular area tend to get snapped up in less than a week, even in winter.  We just got the letter of pre-approval on Monday, after the mortgage person literally went on vacation, dragging our application out across five days when it could have been handled in a couple hours.  Suffice it to say I am extremely unimpressed with our realtor's recommendation for this person...

The main reason I'm so annoyed about the whole thing, though, is that we actually visited a really nice two story house with a rather unique design and a sunroom.  It was built in the mid-80s, and basically featured an upstairs specifically designed to be a private lounge and bedroom, with lots of indoor storage and built in bookshelves.  The downstairs had high ceilings, another couple bedrooms, the expected kitchen, laundry room, dining room, etc.  It didn't have a basement, which was weird, but it was reasonably priced and quite comfy and inviting.  Before we could put an offer in, though, we thought we needed that letter of pre-approval.  Turns out you don't, but we didn't know that.  By the time we got the letter of pre-approval, the owner of the house had stopped accepting offers.  We're on the "very interested in these offers fall through" list, but realistically speaking, I think we're out of luck.

I am, despite myself, crushingly disappointed.  There's nothing to do but go see more and hope we can find something just as nice, though.  If anyone's interested, we (mostly I) made a complicated spreadsheet for house hunting based on something Chris' brother had made.  I'm willing to bet it's not ideal, but it covers a lot of what we're looking for, and generalizes across condos and houses.

It's probably confusing to just look at, so I'll explain.  The top has some basic statistics about the residence and a picture.  Below that on the right is a checklist of things to ask about during the showings we attend.  On the left is a long list of criteria we have for a house or condo, broken into two categories: scored and unscored.  Scored criteria get a rating out of 5, and that rating is then multiplied by how important we think that particular criterion is.  All those multiplied scores are added up and tracked at the bottom.   The unscored criteria are basically just yes/no questions, which are multiplied by 1, 2, or 3 depending on how valuable we consider that criterion.  And then, again, all those scores are added together and divided by the total possible score.

The scored criteria number is doubled, then added to the unscored criteria.  Finally, the whole number is divided by three to get a total out of 100.  Anything about a 60%, when all the information is filled out, seems to be a more promising choice.  But in the end, Chris and I are also following my mother's advice, which was to imagine yourself in the home, doing laundry, getting home from grocery shopping, etc, and see how well the place seems to suit those things.

In other news, yesterday I finished putting together a furniture thing, which should help with organizing my tea (already shown) and my craft supplies (not shown).

The blue things are those little square cloth boxes, and the shelf-thing here is literally designed specifically for them.  This was actually originally on my wedding registry, but it didn't get bought at the time.  So it got onto my Christmas list this year, and my mother-in-law kindly opted to purchase it for us this year.  Putting this thing together actually took longer than I thought it was going to, but it was kind of fun, so I guess that evens out.

In other-other news, I went to a little Christmas party for the adult autistic group, and we did a cookie exchange and watched the first episode of The Good Doctor.  For anyone who, like me, really doesn't watch TV, it's a medical drama type TV show, but featuring an autistic person as one of the main characters.  I'd heard it'd gotten good reviews and mostly positive support from the autistic community, so I was curious about the precise content.  Most depictions of autism I've seen haven't really been positive or particularly endearing.  I would probably call that first episode "somewhat heavy-handed," but "very promising."  In retrospect, I think it was also being very symbolic in a number of ways...

For instance, near the end of the episode, the autistic character is barred from entering the hospital after trying to go help a very badly injured person is a non-socially-acceptable way.  He tries very hard, finding every entrance to the hospital there is, but is always barred from entering.  In the end, someone from inside the hospital has to come get him, to get his help.  Kind of strikes me as how the real world deals with autistic people overall.  We can try very very hard and do our very best, and it's still sometimes not enough.  Sometimes someone on the inside (neurotypicals) have to open the way for you, even though the way shouldn't have been barred in the first place.

I'm sure dozens of people have picked apart this TV show in much more detail and with better background, but I, at least, think it seems promising.  If somewhat hard to watch.  As an autistic person with a lot of empathy and years of skills for reading people... I spent a good portion of the episode wincing over the autistic character's complete lack of social understanding, while knowing exactly why he did what he did.  I was also somewhat surprised by their choice of "functioning level" for the character.  They didn't really lean toward either extreme of autism.  The character was not like me- he couldn't pass for neurotypical for long, if at all.  But neither was he unable to communicate or do things for himself.  He was, more or less, right in the middle of the spectrum.

Perhaps, in my copious free time, I'll watch a few more episodes and write you a Friday post with a better breakdown of the characters and the portrayal of autism.  The show seems to be free to watch (but not ad-free, of course) on ABC. 

Reading the Research: Mirror Neurons and Depression

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 discusses mirror neurons and the effects of depression.  Since many autistic people suffer from various forms of depression, and its sibling anxiety, this seemed particular appropriate to pass on.

In brief, snarky summary:

For people without depression:  Good news!  Depression isn't infectious!  You can continue on with your daily life secure in the knowledge that socializing with depressed people will not hurt you in the long term.  You should, however, keep in mind that this means depression is more than a low mood, and as such telling someone who is depressed to cheer up is entirely pointless.  Be a listening ear and a supportive hand instead, knowing that you will walk away from this encounter and be just fine in a few hours.

For people with depression:  Good news.  Depression isn't infectious!  You can go on with your daily life knowing that you can't permanently drag someone down with you.  If you didn't already know, depression is a lot more than just being down, sad, or burnt out, and therefore, while your life is hard, you can be slightly less unhappy knowing that your existence can't make other people depressed.  Not everyone understands this, so you may still have to put up with thoughtless people telling you to cheer up.  Sorry about that.  You can always link this article to them, though.

Snark aside, I was personally kind of pleased to find out I wasn't a permanent drag on my friends, family, and acquaintances while I was growing up, and prior to getting decent help and therapy.  I suspect I'll never be the life of the party, of course.  But I do have memories of ruining a couple peoples' good moods over time, and while it never actually occurred to me that I might depress people by existing, the thought is frankly horrifying.  So it's nice to have it nipped in the bud.

That said, I suspect if I'd been asked whether depression was infection prior to reading this article, I'd probably have hazarded a negative answer.  Depression, as the article tells us, is much much more than a long-lasting sadness or poor mood.  Things like this prove that, but in all honesty, there are a lot of possible causes for depression.  Mine seems to have been at least partially biologically based, though I'm sure my situation didn't help either.  Being a square peg constantly being hammered into a round hole is painful and exhausting, after all.  Still, adding vitamin D, magnesium, NAC, and the other supplement supports has been an important step in improving my mood climate.

I should probably explain what I mean by "mood climate."  If you think of a person like a square mile of land, and imagine that mile of land somewhere in the world, you would need to also imagine the weather that rolls across it.  Are they depressed?  Then perhaps the area routinely gets a lot of thick clouds and rain.  Anger management problems?  Occasional thunderstorms.  If they're cheerful and happy a lot, perhaps the area gets a lot of sunlight as a rule.  If they're calm and laid-back, perhaps the area has gentle breezes sometimes.  All these things are the area's weather climate.  They're what you predict the weather off of.  They're general rules of thumb.

This is distinct from a person's current mood, which is much more variable and can change from moment to moment.  A person's current mood is somewhat dictated by their current situation.  A normally calm person can be riled up and spitting mad about the current politics.  So a field of grass, normally used to gentle breezes, might experience a thunderstorm.  That's normal enough.  Or a depressed person might have a really great day, and the sun shines brightly through thinned, or even dissipated clouds for a day.  Everyone has mood shifts over the course of the day, that's quite normal.

Within this analogy, I suppose in high school I'd've probably been a land cast in perpetual grey.  Sometimes the grey was brighter, and I could almost see beams of sunlight through the clouds.  Sometimes the rain fell extra hard from clouds so grey they were nearly black.  Thunderstorms occurred very frequently in middle school.  Strong winds blew regularly, making the rain batter the ground.

These days I'm probably more of a partly cloudy area, some sunshine and some shadow.  The wind is temperamental.  It's usually around, and tends to blow at a slow pace, but sometimes circumstances change and it blows a lot harder.  Sometimes rain falls, and thunderstorms happen, but they're less of a regular occurrence.

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 master's 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 people's 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, but 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 people's, 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 people's, 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.  

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!

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.

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. 

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... 

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.  

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. 

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...