Valuable Online Resource: Fair Health Consumer

You know how you can use the Kelly Blue Book to look up the price of a car?  You input the make, model, condition, etc, and it tells you more or less what a fair price for the car is?

Imagine having something like that for medical expenses.  Hospital stays are notoriously ruinous without insurance, and sometimes even with it.  The thing about insurance is that they keep staff onhand to dispute markups on services.  So the insurance company (and by extension, you) aren't stuck paying a thousand percent markup on over-the-counter painkillers.  

The Problem

Why is it like this?  It's actually not as simple as hospitals being greedy.  It's because the US healthcare system has, overall, shifted away from the metaphorical ounce of prevention in favor of the metaphorical pound of cure.  Hospitals, you see, can't refuse to treat someone based on whether they can pay.  But because healthcare is so expensive, a lot of people don't go to the doctor or dentist immediately when they have a problem.  

Instead, they postpone dealing with the issue until it goes away or turns into an emergency.  Naturally, this is when it's most expensive to treat, and narrows your options considerably, but if you can't afford even the basic prevention (because your insurance sucks, or you don't have any at all), it doesn't really matter to you.  So the hospital treats the unfortunate person, but the person can't pay.  The hospital is still out that money, so what are they to do?  Pestering the person via debt collection agencies isn't a very successful option, plus it takes time.  

The solution, as it happens, is to jack up all their prices on everything.  By making people who can pay, pay more, they can systemically balance their budgets after a fashion.  

As you can hopefully see, this is a crappy solution.  And it's vastly unfair to people without insurance companies to negotiate on their behalf, or even with an insurance company that half-asses their negotiations.  It's also typical that people will go into getting medical procedures with absolutely no idea how much it'll cost them, then getting slapped with the bill later.  

The Immediate Solution

For both of these issues, there's a solution, and it's called Fair Health.  While the website has its own tutorials and informative videos, I'll briefly explain how some of the site works.

You can look up how much a procedure or treatment will cost you.  The site will ask you where you are, because that matters in the calculations.  It may also ask you whether you're in-network or out-of-network, which is insurance-ese for asking whether you're getting the service from a doctor they approve of, in a place they approve of. 

Finally, they'll ask for something significantly harder to provide: a CPT code or precise description of the service.  I know about CPT codes because I did a bit of work with them at the front desk of an ABA clinic, but I don't think most people are familiar, so:

In brief, a CPT code is a precise designation for a medical treatment or procedure.  

For example, I looked up D2392, which is "a plain white resin-composite filling that covers two surfaces on a back tooth."  You've got the material type (resin composite), the procedure type (filling), the location (a back tooth, like a molar), and the approximate amount of effort involved (two surfaces, meaning the top and side of the tooth could be involved, which means a moderate amount of material, molding, and drilling is likely to be involved).  

You can look these CPT codes up online, but in all honesty, you're better off just getting the exact CPT codes from the doctor's office when these procedures are proposed.  If you've got a smartphone, you could even look up the codes while you're in there with the doctor.  

The site also has informative sections about insurance, including explanations of common insurance-ese terms like "in network" and "out-of-network." It's fairly basic information, and I don't feel like it's super-well organized, but it is good information to know.  Having it somewhere free and publically accessible is definitely preferable to not having it.  

There's one odd caveat with this site, and it's that it doesn't cover government insurances.  Medicare, Medicaid, and Tricare data is not included here.  The site pretty much exists to help uninsured people, and people on private insurance, make sure they aren't scammed or overcharged.  

In the Long Term

You may have noticed this website doesn't solve the systemic problem of hospitals jacking up their prices to compensate for treating people who need the help but can't pay.  It can help by educating individual consumers, but the overall problem persists.  Y'know what would solve that overall problem?  

Universal healthcare.  Whether that's Medicare for All or some other version, returning to the "ounce of prevention is better than a pound of cure" model of healthcare would save us all a fortune.  People would be able to get cavities filled without feeling like they've chosen their health over being able to pay rent that month.  

In an age of unprecedented bad physical and mental health, where the average lifespan (for everyone, not just autistic people) is actually decreasing for the first time in decades, I feel like we could use the change.  

By the way, if you ever want to do a good deed and personally take a metaphorical bite out of the suffering this unfair healthcare system creates, RIP Medical Debt is an excellent way to do so.  They buy up uncollected medical debt from debt collection agencies and forgive it.  It's an unusual method, but it lets them take $100 in donations and use it, on average, to forgive $10,000 of debt.  Be sure to check it out!

Reading the Research: Autistic Sociability in a Pandemic

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 has a bit of a skewed view on what likely happened, but presents some positive information I'd like to highlight.  This article comes to us from a university in Spain.  While that's certainly not the US, it is still a "Western" country with some of the same cultural values and similar home/work patterns.  

The TLDR (Too Long; Didn't Read) is: autistic kids, and their families, did much better than expected during the COVID 19 lockdown.  These families even improved their communication over the course of the lockdown.  I say "families" rather than focusing specifically on the autistic children, because communication is a two-way street.  Autistic people communicate.  We just don't always communicate in words.  

This article doesn't say the transition wasn't difficult on the families and the autistic children.  The pandemic destroyed or massively altered regular routines, which is very hard on people that rely on those routines for comfort and safety.  That's autistic people, and others that struggle with regular life.  Things were also more difficult because support services for the autistic children were not available, or were less available.  Educational options were minimal or nonexistent as well.  So initially, things became more difficult for families with autistic members. 

However, in the long term, as new routines were established, the autistic children and their families thrived more.  The parents, often unable to go to work, spent more time at home, interacting with their kids.  With the additional interaction and attention, the autistic children thrived.  Or put another way: with more social interaction with people they love and trust, autistic people thrived.  

The last thing I want to underline from this article is this: autistic people are often stereotyped as not being social, not caring about others, etc.  This study specifically states that these autistic children were calmer and happier when they were able to use the Internet to see their distanced grandparents, classmates, and other family members.  In other words, autistic people were also happier being social and seeing people they cared about.  

In other words, yes, we are just like you this way- diagnosis or no.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Book Review: Start Here

Start Here: a guide for parents of autistic kids, is a booklet available for sale or for free online from the Autistic Self Advocacy Network (ASAN), which is a group of adult autistics and parents of autistic people that got together to educate and advocate for the rights of autistic people.  The book is what it says on the tin: a starting place for parents who've gotten the news their kid is or may be autistic, and are sitting back and going "uhhh, now what..?"  

Like many publications from ASAN, this is written in an easy-to-read style.  Complicated or specialized words are defined.  Important concepts are defined and repeated regularly to ensure understanding.  The writers don't shirk from pointing out the racism and sexism in the system, in addition to the prejudice against disabled people you'd expect from such a book.  

In total, the book is 52 pages long, which is somewhere between a book and a pamphlet, I suppose.  The resource list begins on page 42, though, so you're really only reading about 40 pages.  I agreed with almost everything mentioned in the book, which was a nice change from some of my previous reads.  

Topics covered include: what autism actually is, communication differences, listening to autistic advocates, defining disability, presuming competence, choosing services, and schooling options.  It's all done in pretty broad brush strokes, and with the assumption that the parents in question live in the US.  (This isn't unreasonable, since ASAN mainly operates in the US.) 

My only disagreement with the publication was its section on vaccines.  I'm afraid the subject is a great deal more complicated than this book makes it.  While the overall message isn't... entirely wrong, it's not accurate to say Dr. Wakefield put out a study that said the MMR vaccine causes autism.  He put out a set of case studies, or stories of children he was treating, that suggested the MMR vaccine might be related to their symptoms, including autism.  Case studies are a basis for further research, not a means of determining cause and effect.  By putting out the study, he was simply saying "hey, someone should maybe look into this, because here's what happened with these people."  At no point in that study did he say, "vaccines cause autism" the way people seem to insist.

Also, vaccines are not always 100% safe, and in rare cases, can have side effects.  Even lifelong ones.  Pretending otherwise is absurd, since the VAERS exists to help track these.  I found it kind of unfair that the publication didn't even bother to mention Dr. Wakefield's doctorate.  I suspect this was done to give as little legitimacy as possible to the antivax movement, which some consider him a part of.  Still, it sits poorly with me to continue tarring an innocent man that way.  

Beyond that disappointment, this is a broadly useful resource that I feel fulfills the need it sets out to address.  

Read This Book If

You're a parent of an autistic child, especially a newly-diagnosed one.  More seasoned parents might still be able to use this as a refresher, but overall it's a quite targeted publication.  It's a short read, which is appropriate for an overwhelmed parent, but it covers most relevant subjects in broad terms.  A list of resources is included at the end for further (much needed) reading.  

Reading the Research: Supportiveness

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 showcases what I wish every person had.  Especially autistic people, but just in general, too.  

Depression is a part of normal life.  Typically people will experience a couple months of it here or there, when someone they love dies, or a major life change happens... like, y'know, a worldwide pandemic that mandates staying away from other people as much as possible.  

In most cases, people recover from depression in a few months.  Sometimes, though, the emotional burden is great enough that it doesn't.  Or toxic substances, like mold or allergens, cause systemic inflammation, which in turn causes lasting depression.  There's a lot of reasons a person can end up depressed.  Autistic people tend to suffer depression at a much higher rate than the general population, in part due to how poorly designed the world is for us.  

In these all cases, the focus is typically on the depressed person to make changes and improve.  Pills may be prescribed.  Changes in diet, in activity level, and in location might be suggested.  Therapeutic services might begin.  New habits might need to be established, and new patterns of thinking or talking.  All of these things can be helpful in recovering from depression.

What's not typically considered is the effect of the other people in the household on the depressed person.  So it's good to see this article, which shows us a path that others can take to help people with depression.

While the article focuses on significant others (mainly spouses), I have no doubt significant results would have been found if they'd decided to study depressed children and these behaviors in their parents and siblings.   Having someone closely onhand who understands and will listen without being judgmental or taking it personally is invaluable to feeling supported and helping the person recover.  

There are certainly some people who are naturally better at these listening and supportive behaviors than others, but it's all behaviors that can be learned.  I wish it was taught in schools, so everyone would know how to be supportive and kind to people with mental illnesses.  That's not just autistic people, after all.  Everyone would benefit from that learning.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Getting Shot (With the COVID Vaccine)

April 5th was the first day in my state that the vaccine is available to the broader public (ie: not just the elderly and healthcare staff).  Thanks to the diligence of a friend, I was able to get an appointment at a downtown clinic for that exact day.  

I had only about a week's notice, so I tried to spend the time preparing my body for the panic attack the vaccine would be inducing.  Unfortunately, my poor mental health also had an opinion, and so I was only partially prepared for the injection.  

The ideal would have been to have a month to prepare, with regular light exercise, plenty of water, good nutritious food, extra Vitamin C every day, religious tooth care, and a steady dosage of the zinc-elderberry lozenges I use to prop up my immune system when I'm sick.  

Instead, I probably achieved less than a third of those preparations in the week between getting an appointment and the day of the injection.  I'm not a severely at risk human, and my immune system is usually pretty good at its job, but given what the actual virus can and has done to autistic people, I wanted to be very safe about it.  

I woke up that morning feeling anxious and under-rested.  It was storming outside, with distant thunder to prod me awake about a half hour before I'd normally get up.  I stayed in bed for a full hour out of protest.  But eventually I got up because I wanted to at least make an effort at being prepared for the day.  

I put on comfortable but stylish clothes, favorites of mine delivered by a shopping service.  Then a dose of vitamin C (1000 mcg, the usual daily limit).  Then, begrudgingly, brushed my teeth.  Good digestion (which affects your immune system) starts in the mouth, and brushing and cleaning between your teeth is very important.  The experience is still vastly unpleasant to me, though, and I haven't found a way to make it a positive experience yet.  

Next was chopping fruit and preparing green salads.  I'd see my parents (both fully vaccinated) for lunch before the actual shot, and it wouldn't do to not be prepared.  I'd been slightly adventurous this week in the fruit department: yellow dragonfruit and small yellow mangos accompanied a more typical European pear.  Thankfully my parents are supportive of my interest in diverse food.  

It was a bit of a crunch between lunch time and getting downtown to the vaccine clinic, but we managed to find parking (which was free, yay) in a parking structure just underneath the converted convention center.  We were given directions upon entering, which basically told us to text "here" to a particular number, and enter the building when texted back, or when our appointment time arrived.  Despite being 15 minutes early, we were immediately texted to go in.  

Upon entering the building, the first thing they did was check our temperatures with handheld forehead thermometers.  Since neither of us were running a fever, we were ushered in and offered hand sanitizer.  Once that was applied, it was down the stairs and into the convention hall proper.  Which looked like this:

Everything was very neatly laid out for maximum efficiency, with probably hundreds of volunteers politely guiding you in case the arrows and lanes weren't sufficient.  All the volunteers were, at worst, blandly polite.  Some were significantly more cheerful, and a few even thanked us for coming in.  There was no immediate sign of our friend, who we'd planned to meet up with for the event.  

Mostly what I noticed was that it was very easy to go on autopilot and simply follow the clear signs, lanes, and verbal directions.  We later called this "being in the flow," and I experienced it as something akin to being in a waking trance or a near-dreamlike state.  At every step of the way, you knew where you should be going and what you should be doing.  There was no need for conscious thought, because at the slightest uncertainty, there was immediately a staff member to tell you where to go.  

This actually made it rather difficult to take pictures, but I still did, because it's kind of a once (or twice, I guess) in a lifetime experience.  

Several friends of mine referred to this event as Vaccine-Con, which isn't the worst name for it, in all honesty.  It's definitely getting the foot traffic of a convention, and it's in a convention hall.  Seems fair enough to me.  The major difference is that the focus of this is health, and the focus of most conventions is making money.  

There were four lanes like this in the convention center.  Note the stickers placed 6 feet apart, the extra-wide hallways, and the open ceiling.  Also note the chairs placed strategically for people that don't do well standing in line.  In truth, we maybe spent like 10 minutes queuing, if that, but I can imagine the place being significantly busier at other points in the day.  Particularly with the previous eligible group, which was mainly comprised of the elderly.  

Getting to the front of the line afforded you this view, where a staff member would give you some short paperwork and have you sign in and verify essential details on the computer.  It took us maybe a couple minutes.

Once past the final registration, it was time to stand in line for a booth.  Each contained a nurse or someone trained in administering the shots.  The staff that gave us our first dose (Pfizer, one of the two mRNA vaccines) is named Kristin.  She seemed weary, but in reasonably good humor.  I'd honestly assume there were hundreds of people before us, and maybe it was near the end of her shift.  At any rate, she checked our information and then gave us each our shot.

I went first.  I didn't look at the needle going into my skin, because there's no need to make the poor nurse's life any harder than it already was.  I did watch my spouse get his shot, though.  The vaccine liquid was perfectly clear, which was weird to me for some reason. I didn't even bleed, and barely felt the shot at all.  She gave us a bandaid and then we were on our way again.

I left the booth feeling jubilant (one step closer to being done with this pandemic!), but also a little fuzzy in the head.  My doctor tells me I'm extraordinarily sensitive to changes in my system.  I have the ability to tell, based on the sensation in my stomach, whether something I've eaten or drunk was alcoholic.  Same with painkillers, for some reason.  So it could be simply that I could tell my system was reacting to the "invader" vaccine.  Ooor it could be a trick of my imagination.  

Either way, once the shots were done, it was time for the 15 minute cool-off period.  This was implemented because on rare occasions, people would go into anaphylactic shock after receiving the vaccine.  You really don't want that happening while the person is trying to drive home, or on a bus.  So instead they parked us in seats with a big clock to help us track the time.  Bathrooms were also available as needed.  

I've tried to keep people's faces out of my pictures on account of not having their permission to appear in this blog, so you can't see the row of double-chairs for couples or pairs of friends that went together.  My spouse and I settled into one of those to wait out the 15 minutes.  It was a pretty uneventful wait, thankfully.  We did manage to meet up with our friend, and so we spent most of the time just chatting about whatever happened to be on our minds.  

Once the 15 minutes was up, we followed the obvious signs (and verbal directions) to leave Vaccine-Con.  

I can't begin to describe how big this place was... which I guess makes sense since it's a full-on convention center.  Still, as you can see, there was a lot of unused space.  We were lauded with various signs on the way out.  

The "in the flow" effect applied here, too.  My pictures aren't great because of that.  

From top to bottom, the signs read:

💗 You did it.

Keep up the good work.  Please remember:

Wash your hands.

Socially distance.

Wear a mask.

💗 Thank you.

I'll return here in about three weeks for my second dose, which we were able to schedule online within an hour of receiving the first dose.  

The side effects I experienced from this first shot were soreness, mind fog, malaise, and systemic inflammation, which I can now recognize as my neck being crickey-crackity, as well as swollen joints.  The inflammation could be treated with ibuprofen, though I opted not to this time since it wasn't that bad.  My spouse and friend only reported soreness in the arm.  

The second shot is said to be harder on the system than the first, so I may take that day off and just prepare to be dead on my feet.  It's either that, or I won't have symptoms at all, and I'll have a strong suspicion that I was an asymptomatic carrier sometime last year.  I can't decide which concept I dislike more, but thankfully I have zero choice in the matter.  Either I got it on one of the shopping trips I did during the pandemic, or I didn't.  

It'll still be two weeks after the second shot before I can really say "I'm safe and won't need to go to the hospital for this."  Even after that, it's still possible for me to carry the coronavirus asymptomatically and infect people who can't be vaccinated or refuse to do so. So I'll have to keep washing my cloth mask and expecting to wear it in the long term.  

Still, it'll be a relief.  Both for me and for the people that care about me.  

Reading the Research: Catastrophizing

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

Today's article is some long overdue pushback against the Autism $peaks style catastrophizing of autistic lives and outcomes.  

For decades, studies on autistic people and our lives have typically focused on what we can't do, and what things we struggle in.  This is because of the history of the diagnosis and the medical field overall.  Things are labeled as illnesses, a treatment (typically just one, like for a broken leg) is prescribed, the patient does the treatment and gets better.  

This is simplistic, but it works for many physical ailments.  The thing is, autism is not that.  There is no broken bone.  Autism is a neurodevelopmental condition.  There is no one-size-fits-all treatment, and there never will be.  We are simply too different from each other.  Those individual differences have to be accounted for.

This study differs from those of the past by having a much broader focus.  Instead of starting and stopping the narrative with, "well, your kid is autistic, and they're always going to be autistic, so it's time to give up any dreams and hopes you had for your kid and prepare for a life of suffering," this study instead chose to see whether autistic children learn and grow in understanding and ability.  

Unsurprisingly, I hope, to anyone who's met an autistic person, the answer is yes.  While not every autistic kid will necessarily reach all milestones for "normal" communication or independent living, we do continue learning throughout our lifetimes.  Recognizing those successes is an important part of support for autistic people and our families.  It also goes a long way toward undermining the doom and gloom that medical professionals and even some parents project onto 

The study also examined what factors contributed to autistic growth and development of skills.  Unsurprisingly, it helped to have a certain amount of income.  Adequate income takes a significant amount of stress off the family, and allows for more options for family and singleton therapy, as well as support services, better schooling options, and their choice of doctors and medical professionals.  

I'll be interested to see what this group's research on adolescents shows.  This study only went up to age 10, which is definitely sufficient to prove that autistic people aren't magically stuck at the developmental age they're diagnosed at.  But the teenage years are distinctly more demanding and difficult than the years before them, and so that data would be exceptionally useful as well.  

For further information on this learning and growing (also called neuroplasticity), please also consult this podcast episode.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Book Review: The Game of My Life

The Game of My Life: A True Story of Challenge, Triumph, and Growing Up Autistic, by Jason "J-Mac" McElwain with David Paisner, is the story of one autistic guy's 15 minutes of fame.  It's less than 250 pages, mainly narrated by the autistic guy, with bookends from the other author.  

I found this book deeply disappointing, in retrospect.  Save for the blunt honesty of the star and some of the contributing family/friends, this is pretty much a textbook case of inspiration porn.  The vast majority of the book's focus is not Jason McElwain's life, his childhood, or his future.  It's basketball, and more specifically, one particularly meaningful game near the end of Jason's high school career.  

Jason's favorite hobby and intense interest in the story is basketball.  Terminology from that game is everywhere, including how the sections of the book are named.  It isn't too overwhelming, though I did have to look up how many players are in a basketball team (typically five) to understand why his fan club was called "The 6th Man" group.  

Bits and pieces are given of Jason's life prior to the basketball team, but only enough to give you the faintest amount of background... which is pretty in line with most news articles of the same type.  

A neat feature of this book, which I can now only consider a very extended inspiration porn news article, is that it folds in little pieces from Jason's family, friends, coaches, etc.  It's done in the conversational tone so common to other autistic writing, too, such that Jason will sometimes respond directly to what was said in those miniature pieces, or even vice versa.  

What I found most telling about this book, and where it became crushingly clear to me what I was reading, was at the end of the book, more than 200 pages in.  The writer here, probably David Paisner, calls it "bittersweet."  I'm not honestly sure where the sweet is.

The short version is that Jason's friends have graduated and, as is typical for that age, scattered to the four winds.  He rarely sees even the ones that remained in the area.  He did not graduate high school with a diploma, and at the time of the book, works as a baker at a supermarket.  A job which he seemingly enjoys, but not one where he does anything with the love of basketball and the team that this book is centered around.  

His parents' wish is for him to be able to live independently someday.  It's even said, and I quote, "Forget the sectionals.  Forget the twenty-point game [both things the literal whole point of this book].  That would be the true pinnacle, if Jason could harness his abilities and his growing independence and find a way to make it on his own."  

The twenty points Jason scored in under 4 minutes, the feat that made this whole book and dozens of news stories, ESPN clips, etc, possible... and that's how they choose to talk about it at the end of the book.  "Forget all that, this is what matters."  Talk about buckets of metaphorical cold water.

I think maybe why this gets my goat so much is that in the end, the 15 minutes of fame is over, and everyone except Jason has moved on.  Those 4 minutes and the surrounding time might be the best his life will ever be.  The community rallied around him, everyone celebrated him, and then it was over.

As a somewhat disabled autistic person, many jobs are closed to him.  Expectations are low.  Opportunities are minimal.  If this is all there is, and by the tone of the book, it pretty much is...  that's it.  

Maybe Jason feels otherwise, and I hope he does... but that's really depressing to me.  He'll likely live another few decades, and only have being a stocker or a clerk to look forward to.  I don't see why he couldn't learn to be a coach, or aim to be a team manager for a sports team like he was in high school.  Or, I should say, "I don't see why unless he doesn't want to."  

In the end, this feels like a story of met potential, and then ignored potential.  I'm aware that the 15 minutes of fame is called that because it goes away after 15 metaphorical minutes, but the expectations the other author and his parents seem to have for him are depressingly low.  

I don't know the guy, but I really hope things got better for him after this book was published.  That he did make it to living on his own (maybe with help, maybe without), finding a life partner if he wants one, pursuing whatever dreams he has.  I hope his parents give him the space to do those things, and don't stand in his way, afraid he'll be disappointed, the way his mother did over and over in the book.  

The struggle with autistic kids is figuring out when to let us try and succeed or fail on our own merits.  Because we don't develop at the same rate as our neurotypical peers, it can be really challenging to recognize when it's appropriate to do so.  Some parents will stand between their kids and almost every risk in the world, lest we fail and become disheartened.  Which, counterintuitively, steals our opportunities to learn and grow, and makes future failures extra-disheartening.  

Don't do that.  Let autistic people try things.  Don't treat failure as the end of the world, but instead recognize it as the normal part of life, and the learning experience, that it is.  

And definitely don't grab your kid's head between your hands to demand their attention.  Good Lord what a hideous, tyrannical action.  Jason hated it, and he says so in the book, and I'll back him up.  Don't. Do. This.  

Read This Book If

You want to read an account of a very autistic 15 minutes of fame, and don't mind that it is definitely inspiration porn.  This story is written mainly in the typical autistic honesty and conversational style, and Jason McElwain is quite frank about the way he puts things and acts.  I'm not sure his story has a happy ending, but the 15 minutes of fame and what led up to it are described in a way that almost lets you be there in person. 

Reading the Research: Misjudging Stereotypical Autistic Behaviors

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 helps show that the miscommunication issue between autistic people and neurotypical people is not simply an autistic failure, but a failure on neurotypical peoples' parts as well.  

There's a few stereotypes you can see in the presentation of autistic people mentioned here.  Things like avoiding looking people in the eyes (can be overwhelming), literalist thinking, and repetitive movements (often used to calm ourselves in stressful situations) are all factors.  It's gotten to the point where I can, in some circumstances, interact with a person and be able to tell almost immediately that they're neurodiverse.  

Apparently, this article says, these behaviors look like the actions of a person being deceptive.  Oddly enough, these behaviors are actually not particularly indicative of a person being deceptive... we as a culture simply think they are.  

The implications go much, much further than the article suggests.  In court, autistic people receive harsher sentences than our typically developing peers.  But I'll bet dollars to doughnuts the same effect holds true in other arenas of life, such as job interviews and first impressions.  

When we talk about autistic people being disabled, this is a major part of it: the way others see and react to us.  Others' prejudices and failures are not our fault, but we're expected to bend over backwards to compensate for them.  That's neither fair nor healthy for anyone involved.  

It's the same expectation as saying, "well if women don't want to be sexually assaulted, they should wear clothing that hides every inch of skin."  Or maybe more accurately, saying, "Well if black people don't want to be murdered by the police, they should act like they're white as much as possible and be as nonthreatening as possible at all times."

Because of this prejudice effect, autistic people are denied the chance for friendships, the ability to participate in our communities, job and volunteer opportunities, promotions, and general human consideration.  We deserve better.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Inspiration Porn and Disability

This post is brought to you by the book I'll review for next week, but it's been an issue for years.  It crops up in local newspapers, in social media, even by word of mouth.  

Defining

What is it?  It's typically images, videos, articles, and memes of disabled people accomplishing something, used to motivate or shame abled people.  The gist is basically "well if this disabled person can do it, of course you (an abled person) can!"  There's a variant where the disabled person is the prop by which an abled person shows how nice/noble a person they are.

Inspiration porn is called this because it is objectifying just like regular porn.  No sex is involved, but it reduces our personalities, loves, hates, and quirks down to our disabilities, as if "autism spectrum disorder" or "cerebral palsy" or "sacral agenesis" tells you anything at all about the human involved.  It erases us and our struggles for the sake of the comfort and happiness of abled people.  

The Problem

I shouldn't have to tell most parents of autistic people that not all autistic people are the same.  My life's trajectory, as mainly a highly verbal loner without a community to support me, but successful in academia (though not outside it, really), is one possible route of many for autistic people.  

There are also autistic people that are raised by proverbial villages, and have massive support networks and people looking out for them.  There are autistic people with intellectual disability and autistic people with average intelligence.  There are autistic people who are savants, and autistic people without "special interests" or favorite hobbies they love intensely.  There are brilliant wordsmiths and nonspeaking people who are still incredibly gifted, thoughtful, intelligent humans.  It is, after all, a spectrum.  

Yet my life, if I were to get famous suddenly, would be boiled down to "autism spectrum disorder."  Maybe "Asperger's Syndrome" to dissociate me from nonspeaking autistic people, as if I haven't spent several points in my adult life nearly or totally unable to communicate verbally.  And as if I don't share any traits with nonspeaking autistics, despite sensory sensitivities being very common, as well as depression and anxiety.  

It also demands that disabled people always be inspirational, for the benefit of abled people's pleasure and comfort.  It makes the sum total of our disability "a burden to be overcome" and refuses to acknowledge the social barriers that so often stand in our way.  And finally,  it reinforces the stereotype that disabled people are less competent and capable than abled people.  

An Example

This is probably the first example I ran into, years and years ago, on Facebook.  

The text says "Your excuse is invalid" and the unwritten subtext is "if this small child with prosthetic legs can get out there on a racetrack and enjoy running despite having no legs below the knee, you have no excuse for not doing whatever it is you're not doing."  

We know nothing at all about the child.  He is simply "small white boy with prosthetic legs" and his image is being used to guilt trip people for supposedly not accomplishing enough.  

I did some searching.  This child is now old enough to drive (and soon drink, too).  His name is Cody McCasland, a resident of Texas, and he's a serious athlete, but not a runner.  Running is a hobby.  He's a swimmer, with hopes of competing in the 2020 Paralympics.  And according to his bio on a website, he also wants to be an anesthesiologist, in part due to all the time he's spent in the hospital (30ish surgeries).  

Looking at the information from the media, it seems Cody has leaned into the publicity to some extent.  I sifted through a dozen or so articles, and all they typically wanted to do was rehash what amazing odds Cody beat, his promise as an athlete, and how wonderful that all is.  

Nothing is said about the difficulties inherent in affording, using, and cleaning prosthetic limbs.  Nothing about how many types of limbs he has, or why you can't just have one set for everything.  Nothing is asked about Cody's high school experience, his home life, any siblings... Nothing about the stares he inevitably gets from strangers, nor the invasive questions.  Nothing about him is of interest except his "overcoming" of his disability.  

In summary, Cody McCasland is reduced down to his disability, his struggles are omitted, and he is merely a prop in this picture.  His triumph is reduced to a bludgeon that, in the best case, might be used positively to elbow an abled person into starting to be healthier.  It might also be used to guilt trip someone with an invisible disability, because "well you have both legs, so get out there!"  (left unsaid: "I neither understand nor care that you have chronic back pain or some weird allergy that makes you utterly miserable when you do moderate to high intensity exercise").

Let's look at an article from a prosthetic arm user.  Let's see, it's titled, "I have one of those most advanced prosthetic arms in the world -- and I hate it."  Hmm, can we guess how this is going to go?  The article is worth your read, by the way.  Real talk from someone whose life is unfamiliar to you often is.  She's even included short videos of her using the limbs.  

Generalizing Disabilities

There's one more issue with generalizing Cody's story to every possible situation, sitting back, and saying, "well if he can do it, anyone can!"  

Let's start by noting the obvious: Cody's disability is physical.  His legs from above the knee are flesh and blood, and below that do not exist due to a major difference in his DNA.  To move around at a normal height, he uses prosthetic legs.  This is a visible, physical disability.  

Visible disabilities mean you get stares and invasive questions.  This is typically unwanted.  However, because your difference is obvious, no one questions whether it is real.  An invisible disability, like mental illness or autism, can be disbelieved.  A person can decide, after looking at you, that your struggles are not real.  Seeing, as they say, is believing.  

Physical disabilities tend to be visible, but they don't need to be.  Chronic joint pain, fibromyalgia, and blindness without the person carrying a white cane or some other identifier are all physical disabilities, but not simple ones to notice in a second or two.  

Invisible disabilities include a spectrum of things people don't necessarily notice or care about, including depression, anxiety disorders, chronic back pain, chronic dizziness, diabetes, sleep disorders, chronic fatigue, and agoraphobia.  Because no apparent disability is noticed, the effects of these disabilities may be blamed on the sufferer's innate qualities.  

Instead of recognizing the very reasonable tiredness and reduced performance of a sufferer of insomnia, people might instead decide she simply isn't trying hard enough, or that her sleepiness is because she's too busy partying to adhere to a normal sleep schedule.  In reality, she may have spent hours lying in bed, fruitlessly trying everything in her power (from podcasts to boring textbooks to exercise to adult coloring books) to get to sleep, all as the clock mercilessly ticks onward towards the next work day.  

So while Cody's disability is clear, obvious, and the path to addressing the disability is clear... that is not the case for other disabilities.  

One need really only look at autism for a demonstration of this.  Some autistic people can find sensory relief in small perfume jars, swatches of fabric, or particular blankets.  Others would find those things ineffective or torturous.  Some autistic people suffer from gut dysbiosis or allergies, and need to eat according to special diets.  Choosing the wrong diet can be terribly painful.  Still others benefit from basic lessons in the mechanics of conversations.  I, however, would find such lessons irritating at best.  

What works for one autistic person does not necessarily work for another.  This is pretty common knowledge, immortalized in the saying, "If you've met one person with autism, you've met one person with autism."

Saying, "well this kid with a clear disability has a harder life than you, and still is doing this thing, so why aren't you doing this thing?" is insulting not only to him, but to the person you're talking to, who may have struggles you don't know anything about.  

For further reading, please consult this article, which also links to an excellent TEDx talk.