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!

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.  

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.  

Making an Apology: Balancing Objectivity and Subjectivity

In the last year or so, I've been learning one of those Hidden Curriculum things I'm fairly certain most neurotypical people take for granted.  That is, how to handle people, their emotions, and their subjective experiences balanced against your own subjective experience and your best understanding of what actually happened.

People seem to vary on this, but I personally believe there is one true objective reality.  The truth, so to speak.  However, humans are mostly too limited to be able to see it, blinded as we are by our cultures, prejudices, and personal experiences.

For every event that happens, there is, I feel, an objective account of what happened.  But then there's also the subjective experience of each person involved in that event.  A simple conversation between myself and my spouse has three parts, then:

• What actually happened (the exact words exchanged and the objective situation)
• My subjective experience and emotions in the conversation (my emotions and feelings during the conversation)
• His subjective experience and emotions in the conversation (his emotions and feelings during the conversation)

Dirty Dishes

An example of this might be a quick interaction between my spouse and myself regarding a kitchen sink full of dirty dishes.  It is my spouse's job to put dirty dishes into the dishwasher and run the dishwasher when it's full.  I use this particular example because it's come up more than a few times, but also because typically when it does come up, it's usually an isolated incident of "life was very busy, things were missed."

The objective facts of the situation are this: the sink is full of dirty dishes, there is room in the dishwasher for them, and this situation has been true for a couple days.  It is my spouse's chore to handle that situation, ideally without letting any build up of dirty dishes happen, ever.  Objectively, then, my spouse is at fault.

When I bring up the subject to my spouse, I may be upset or even angry that the situation has sat for that long.  This is because the sink being full is like a poke in the eye every time I walk past it, plus there's the smell, plus I can't use that side of the sink.  It is also not my job to police my spouse and remind him to do his chores all the time, and I may be frustrated that he still hasn't gotten to it.  The situation, therefore, is subjectively upsetting to me, and I may use harsher language than necessary to request that my spouse do his chore and pay better attention next time.  Objectively, it is reasonable for me to be upset in this situation; we had an agreement that he would do this chore in a timely manner, and because he didn't, I suffered those metaphorical pokes in the eye every time I went into the kitchen.

My spouse, on the other hand, does not experience those pokes in the eye.  In fact, he doesn't usually notice the buildup.  The situation, then, may have completely escaped him until I point it out.  Or he may have noticed it once or twice and said to himself, "I'll do that later today," and then simply forgotten.  Regardless, having the subject brought up in a harsh manner would be surprising and hurtful.

So the (suboptimal) interaction might start with me saying, "Dear, could you please take care of the sink already?" with an edge in my voice, and then not taking "not right now" for an answer, and his surprise, hurt, and dismay in response to that.  We might then need to work together to convey why I was I was so upset, and I might need to apologize for being harsh, demanding the situation be fixed immediately, and for making him feel attacked.  

The objective facts remain true, that it was his job to do the dishes.  And my upset at the situation is valid, because of the reasons I listed above and because the situation shouldn't have happened in the first place.  However, there are better ways to address the situation that don't hurt feelings, and his hurt feelings in response to my harsh words are valid.  

Learning to say: "I feel like this happened"

For most of my life, all I've cared about is the first part of the equation: the objective facts of the situation.  The second part (my subjective experience) was somewhat unavoidable, but I mainly tried to work with and focus on what actually happened, rather than anything squishier and harder to understand.  That included my own feelings and emotions.

The thing is, that's not really how people and interactions work.  You can't tell someone whose feelings you've hurt, "well that's not what I said," and expect their hurt feelings to just... magically go away.  It literally doesn't work like that in 99% of humanity.  To be successful, you have to acknowledge that others' feelings and viewpoints, while possibly inaccurate, are also valid.

It has been somewhat of a struggle to learn to say, "I feel like this happened," and "to me, this is how this happened," rather than, "this happened."  I've had a helping hand with that, which is to say that my memory doesn't seem to be as crystal clear as it used to be.  Regardless, though, even if it was still crystal clear, the fact would remain that I'm prone to error.  I have a subjective experience, with emotions that color my understanding of the truth.  My memory might not be perfect, and even if it was, if the other person understood the words differently, their perspective and feelings also matter.

So, in an argument with my spouse about how to handle chores (a common friction point in our relationship and in many others), I have to keep his emotions and subjective experience in mind during and after the conversation.  If he becomes upset, it's not productive to try to argue him out of being upset, even if I think he's being unreasonable.  

Instead, I need to address the upset.  Perhaps I've been unnecessarily harsh in choosing my words because I'm frustrated.  Or perhaps it's not even my fault and  he's upset because other stuff in life (like a job change or the stress of the coronavirus) is putting pressure on him and it's made him snappish or more prone to defensive (rather than constructive) behavior.  

Knowing the why of the upset is helpful to me, because it makes me feel like I can handle the situation better.  Regardless, though, I don't gain anything by ignoring his upset emotions.  Doing so simply prolongs the bad feelings.  Even if they seemingly go away over time, resentment can build up and poison the relationship.  Since I love my spouse and want our marriage to last, I try not to let this happen.

So I apologize as best I can, using what information I have, and try to ensure that if it was my fault, I don't repeat the error.  Sometimes it's difficult to apologize, because I feel perfectly justified in what I've said or don't feel I've done anything wrong.  However, even if that's true or the harm I did was unintentional, my spouse is upset, and that has to be addressed in order to move on.

With the upset handled, the actual incident can be handled, and my spouse will then prioritize handling his chore, and perhaps even apologize for letting it slide for so long and subjecting me to so many pokes in the metaphorical eye.

The Parts of a Good Apology

Apologizing isn't really a skill I was taught much, especially as an adult, so I've had to piece together how to do it well in my relationship. Your mileage may vary: some people value certain parts of an apology more than others.

First, set aside your anger, resentment, and frustration.  That can be really hard when emotions are overwhelming, so it can help to take a few minutes' break from the discussion before attempting an apology.

Before you start talking, take into account the other person's perspective.  Why are they upset? Did you cause the upset?  These need to be included in the apology. I like to ask for clarification if I'm unclear on points, but depending on who you're apologizing to, asking at the moment of apology may simply bring more anger.  Some people don't care why you did something, because they're blinded by being so upset.  In those cases you need to apologize first, and the person may elaborate on why they're upset in response.  You can then use that information to make a better apology directly afterwards, and a third or more if needed.  

Knowing the why of a situation is very important to me when I'm being apologized to, because it gives me information about whether the person was acting as they thought I'd prefer, being thoughtless, or even whether a bit of cruelty was involved.  It clues me into how genuine the apology is, and the circumstances the apologizer was in make their actions more understandable.  It helps me understand the apologizer better.  

However, there are limits.  The problem with giving context for your actions when apologizing is that it can come off as making excuses rather than a genuine apology.  If there's too much context and not enough taking responsibility and acknowledgement of the other person's hurt and upset, the apology rings false.  Finding the right balance takes practice.  When in doubt, I typically apologize with whatever context I have and explain the why afterwards.  

When you make the apology, convey your understanding of the situation and acknowledge the other person's hurt and/or upset.  Keep in mind what you're responsible for: your words and how you said them.  But also keep in mind that an apology is far easier than finding new trusted friends or a spouse. 

Something to keep in mind is that when you apologize... You are not necessarily saying that you are wrong and the other person is right.  I may be perfectly correct and reasonable in being upset about the dirty dishes situation, but I still don't want my spouse to be upset when I bring it up.  I just want him to fix the situation and make efforts to keep it from happening again.  So my apology to him would NOT be, "I'm sorry I upset you, I shouldn't have said anything." Instead, I might say, "I'm sorry I upset you with the way I brought this issue up.  I didn't mean to make you feel attacked."  

The apology does three things: it validates my spouse's feelings and his right to have them (something we both struggle with), it lessens the amount of hurt he's experiencing, and it demonstrates that I care about him.  All these things are important to keeping a relationship healthy.  

It's been a struggle to learn this skill of balancing objective fact (as best I can recall it) and subjective realities, and I'm definitely still practicing.  However, our relationship and communication has improved as a result, and conflicts happen less and are resolved far more quickly.  We used to spend hours of misery on each conflict, sometimes even on things that weren't really important.  It's now down to minutes, and the conflicts are far smaller.  

When and Whether 

As a note: The kind of people-handling I've described here works because my spouse and I don't mess around.  We don't play emotionally abusive mind games or invent problems for attention.  When either of us brings up an issue, it is in good faith, something that is genuinely an issue.  I am very fortunate in that regard, because abusive people can and absolutely do take advantage of autistic people.  It can be hard for an autistic person to sort out what's a reasonable concern and what's unreasonable or emotional manipulation, because neurotypical people don't make sense to us in the first place.  

I don't typically need to use this kind of people handling in the rest of my life.  Random passersby and business associates either don't generate conflict or don't matter enough to care about the conflict.  In the latter cases, I typically apologize because it's the right thing to do, but I don't place a whole lot of emotional investment or energy into it.  So I mainly need this skill for handling friends and family.  

I suspect it helps to practice it with a wider variety of people, but with that wider variety also comes the potential for abusive or bad faith interactions.  I also have far less information on how, when, and why to make an apology, which means less successful interactions, even when I'm doing my best.  So it pays to take care when handling conflict with less familiar people, and weigh the possibility that the other person isn't being genuine.  

This is honestly difficult, especially since I tend to automatically take people at their word.  It's exhausting to second-guess what people tell me, which is probably why I usually don't bother these days.  My life is hard enough without having to spend my limited energy on second-and-third-guessing what people meant.  I'd rather spend my energy growing food or reading autism books and research.  

So it's only if the people are important (friends and family) or if the situation is important (job interviews or advocacy) that I usually bother these days.  Everyone else can just say what they mean.  Which is how I think everyone should act anyway. 

Doing Your Best

The last thing is that sadly, even the best apologies don't always fix everything. 

The other person needs to be willing to hear your apology and try to move past the conflict.  While that's usually the case, it isn't always.  Sometimes you simply have to do the best you can for a situation, and then move on.  I've lost a few friends in my lifetime, and whether the fault was mine, theirs, or both, it's never terribly fun.

To me, doing my best for a situation means:

• Apologizing to the best of my ability, 
• making right what parts of the situation I can (like replacing an item I broke), 
• reflecting on my part in the situation so I can avoid repeating it in the future, and
• forgiving myself.

When I've done those things, I can lift my head and say, "I did my best, and if you can't forgive me, that's on you."  I can then move on without regrets about myself and how I handled the situation.  

At the end of the day, I have to live with myself.  Doing my best in as many situations as I can is one way I make that existence tolerable, or even something to be proud of.  

"Rehoming"

Hey folks?  Raising special-needs kids is really hard.  We all know this.  Sometimes people need extra support to manage the task, like therapy, scheduled self-care time, respite services.  That is okay, and normal. 

Sometimes, people simply aren't equipped with the resources they need to raise a child.  That's less normal, but it does happen.  In that case, the correct response is to contact an agency that's experienced in handling these things...  not to hand your child off to some random people on the Internet.

This is apparently horrifyingly easy to accomplish, thanks to the convenience of the Internet.  And naturally, the folks often looking to receive children this way aren't... exactly... star parent material. 

Here's a summary of an investigation into one child's experience with "rehoming" from Reuters, plus significantly more data from one online marketplace.  While the article mainly focuses on children adopted from overseas, the majority of the children "rehomed" like unwanted dogs and cats had some form of listed special needs... and the vast majority of the rest didn't come with any data on the subject.  Personally, I'd bet at least half of the "unlisted" children had some form of neurological difference or mental illness. 

I don't think I should have to say this, but: children are not pets.  They are not ornaments to boost your status.  There's a word for treating children like this, and that word is "monstrous." 

There are reasons for the laws and red tape that guard the process of giving a child up for adoption, and it's to prevent those children from becoming trafficked into the sex industry, abused by people unfit to care for even animals, or even being murdered and simply disappearing. 

If you, or someone you know, is overwhelmed by the task of parenting someone with autism, special needs, etc, that's okay.  There are options available to you. 

In Michigan, you can get help through your local Community Mental Health.  They can provide respite care and help you get support services for yourself and your child.  If you adopted, the agency that helped you adopt will likely have some supports to help.  For example, Adoptions From The Heart has this page and Adopt US Kids has this one.  Michigan also has an organization called MARE that provides resources as well as arranging for adoptions.

MARE also has links to resources in other US states here, and for traveling military members.  You may also receive assistance here.

Please remember that needing help raising a child is not failure, it is life.  The saying is "it takes a village to raise a child," and most of us these days don't have social circles as wide as a whole village.  Seek these resources to support yourself and your child(ren), and recommend them to people who are struggling.  

What I learned on #BlackoutTuesday

Yesterday was Blackout Tuesday, when people stop business as usual to boost the typically repressed black voices around us.  I am white, so I took the opportunity to do so on my Twitter account (and donate to Black Lives Matter), but I also spent a few hours that day learning about police violence and why the black community in the US is so upset.

As you read this, please keep in mind that autism is not a white-only phenomenon.  Black and brown autistic people are just as human as I am.  Additionally, the police are typically untrained to handle autistic people of any skin color, so it doesn't take much time on Google to find cases of autistic people needlessly shot by the police because the latter misunderstood the situation.  Reducing police violence against black people will bring measures that also save autistic people.

Please also keep in mind that the police are not a monolithic organization.  Each department will be somewhat different, and each member is a human being.  There are some very evil, hideous humans counted among the police (some of whom are in positions of power), but the majority didn't join the police for petty, power-seeking reasons.  However, the systems they live and work in have skewed their actions, and even their perspectives.

In the spirit of understanding and building a safer world for us all, I present to you what I found:

1. The police pay a massively disproportionate amount of attention to black people, and this results in more incarcerations and more deaths.  You can find proof of this in both scientific research and simply in the statistics of the dead.  Racism does, in fact, exist in the system.
2. The police, especially in cities, are unionized, and their contracts renew every 4-6 years.  These contracts can include things like erasing officers' past misconduct from their files, limiting civilian oversight, and disqualifying misconduct complaints that are submitted too many days after an incident occurs.  Here's a good website about this subject, and a study that shows "bad apple" cops tend to stay "bad apple" cops.  Ever wonder why "bad apple" cops get to stay cops?  This is part of why.
3. Police policies often do not require officers to de-escalate situations, intervene if other officers are using excessive force, give a report each time they use force, or even give a verbal warning before opening fire. Here's a particularly good website about this subject.  If you thought, like I did, that all of these things would be in every police department's policies... well, I'm very sorry to say they're not.  Which is a pity, because these restrictions save lives.  The police are not required to exercise even basic protections against excessive force.
4. Police forces are being handed military weapons, and the results, predictably, are more dead people and less safe areas.  Here's a publicly available study on the subject.  The police do not need military-grade weapons to do their jobs.
5. When dealing with mental illnesses and developmental disabilities, the police are almost inevitably out of their depth.  They don't receive the kind of training needed to resolve those situations.  There is another option,  though, and it's to have a separate agency to handle those crises.  Deaths by police could be reduced by a quarter or more. Here's an article about just such an agency in Oregon.  The police are neither prepared nor necessarily needed for crises involving mental health or autism. 

Please remember that evil triumphs only when good people stand by.  The job of the police is to help keep the peace.  That does not include terrorizing racial minorities, shielding their "bad apple" members from consequences, and avoiding reasonable restrictions on their use of force.  

To learn more, and stop standing by (and thus silently saying, "this system is just fine, black (and autistic) lives don't matter"), consider:

• Donating to Black Lives Matter and Campaign Zero
• Supporting black-owned businesses, including banks.  I sadly only know of one black-owned business in my area, but the cookies they sell are quite good (and secretly somewhat nutritious!)
• Advocating for better laws, fair police contracts, community oversight and representation, and limitations on the use of force.  Campaign Zero is a great place to start with this.  

Autism Friendly Homes/Business Audit Sheet

About a year ago, I audited a local grocery store, testing to see how autism-friendly or -unfriendly it was.  I'm well suited for this sort of audit, because I have sensory sensitivities in plenty but I'm usually able to quantify and express what I experience in an understandable way.  Your typical autistic child or even adult may suffer similarly, but lack the vocabulary or even the understanding of what in particular is hurting them.

At the time, I developed an audit template sheet.  It's very much a work in progress, and I'm sure actual auditors would be able to improve it.  I tried to make my criteria reasonable for a business, but this isn't the kind of audit sheet most commercial businesses could score 100% on, even if they're dedicated to being accessible.

The sheet is here, and should be publicly available.  Rather than rehash what I've already written on the subject, I thought it might be worthwhile to discuss how these criteria could apply to a home.  We're stuck at home during this quarantine, it makes sense to make your home as comfortable and accessible as possible for the autistics in your life.  After all, a supportive environment means fewer meltdowns and less tension and unpleasantness.

Lighting

Lighting is complicated issue in the commercial use,  but thankfully simpler at home.  Fluorescent lights are basically the standard in institutions and commercial buildings because of how cheap they are to run.  You literally turn them on at the beginning of the day, and thereafter they cost pennies to keep lit for hours.  Incandescent lights are far more expensive.  Natural light is beholden to the eccentricities of the weather and the day and night cycles.  The choice, in terms of saving money, is painfully clear.

From an accessibility standpoint, however, fluorescents are awful.  They flicker, even when working properly.  Some autistic people can see that flicker, and it's immensely distracting, or even painful.  Allistic/neurotypical people may relate if they've ever been stuck in a room with a malfunctioning, flickering fluorescent light.  Multiply that irritation by at least 3, and you're in the ballpark for the autistic people who are less affected by this issue.  It goes up from there, to the point where some autistic people can't be in the same room as fluorescent lights.  You can mute the flicker by shading them, or having a mix of light types.

Thankfully, most homes I've been in don't bother with fluorescent lights except in laundry rooms.  If there are any rooms in your house that do have them, check with your loved one about those areas of the house.  If the autistic person doesn't speak, consider whether they typically avoid those areas of the house, or whether meltdowns seem to happen more frequently in those areas.

Also a plus, most homes don't have those horrid blue-white LED light strips, or little flashing TVs to hawk products at you.  Most homes are also not lit to commercial standards, and are darker and easier on the eyes.  Additionally, homes tend to be lit with warmer colored bulbs.  Where industrial settings and some commercial settings use blue-white (or "outdoor") lights, homes use "indoor" warm yellow-white lights.  These are less piercing and painful than the alternative.

Sounds

Sounds are a different kind of problem.  There are some places (one restaurant in particular that shall be nameless) that I simply can't be in comfortably, because the noise level is too high.  Having a reasonable noise level, including the ambient noise or music, and the noises the other residents make, shouldn't be too much to ask in a home.

What's reasonable may vary by the person.  I typically have a very quiet home, so quiet you can actually hear the HVAC system and water in the pipes.  But depending on your culture, it may be normal to have at least one stereo blaring music, or a TV on all the time.  Keep in mind that there's a difference to autistic people between sounds we don't control (like someone else's stereo or TV) and ones we do (like banging on a drum, our own music or TV, etc).

Overall volume is only one facet of this problem, though.  You also need to factor in how complex the environment is.  If, like Seaworld, you have competing music in certain areas, that is unpleasant to people with sensory sensitivities. Consider the things that make noise in your home.  This might be something as simple as the refrigerator droning, or the washer/dryer clunking or banging.  Perhaps the heating/cooling system clicks or bangs when it turns on.  Or maybe some of your lights hum when they're on.  I have a dimmer switch on the dining room that hums and snaps a bit when it's in use.

If you can, ask your loved one about these things.  If that's not an option, spend a few minutes in each room of the house, and just listen carefully.  What do you hear?  Keep in mind that younger people can often hear higher frequencies than older people can, so even if you hear nothing of note, there may still be noise you can't hear.  Or sounds you would normally tune out, like the buzzing or notification sounds of others' phones, that aren't as predictable.

Finally, emergency alarms need to be considered.  This includes fire alarms as well as carbon monoxide detectors.  Most fire alarms I've had the misfortune of experiencing were blindingly painful.  They are the typical high-pitched, grating, painfully loud shrieks that are designed to wake people out of a cold sleep and send them shambling down the stairs and out the door in a stupor.  These are widespread, but they're not the only kind of fire alarm in existence.  When my second high school remodeled their library, they installed a talking alarm that made lower pitched booping noises and informed people in English that there was an emergency, and to please leave in an orderly fashion (I forget the exact directions).

In 2004, the US Consumer Product Safety Commission put out a document on home fire alarms.  While dense, this document is informative on the various options for alarms, including ones that don't rely on sound.  In short, there are many options, but in general most places have stuck with the most sensory-unfriendly ones.

Smells

Smells might be the easiest of the three to address, in most business settings.  Usually you don't want to overwhelm a person's senses with a cacophony of odors.  There are exceptions, like scented candle shops or places that sell soap and bath products.  Other places, like bakeries and grocery stores, will pump in manufactured smells to mess with your brain for a more positive impression of the store.  Or there may be ripe trash areas, bottle returns full of old beer stink, etc.  That's a no-no for being accessible.  Restricting scented items to their own sections is pretty basic, and should be doable for almost every business.

In homes, the situation is much less predictable.  People may burn scented candles or wear perfume or cologne with no thought towards others' comfort.  But these overtly scented items aren't the only way excessive smells can infect an environment.  Every class of cleaning product, from hand soap to floor cleaners to laundry detergent, comes in scented varieties.  Typically these aren't too overwhelmingly powerful, but exceptions exist... and sensitivities vary.  I know of one woman that has to buy all her products in unscented, or she will suffer immensely.

Keep your scented product choices in mind when considering the environment for an autistic person.  Do they tend to complain about or avoid areas that have recently been cleaned?  Or do they prefer the smell?  Keep in mind, too, that even common unscented cleaners, like bleach or vinegar, can have strong odors that can upset a sensory-sensitive person.

Cooking smells can also be a minefield, depending on the person.  Some smells, like cabbage or onions, can bother even neurotypical people.  This is especially true in smaller areas.  So if your autistic loved one typically melts down when you're frying fish, that's a pretty clear sign.  Maybe skip the fish, or at least try a different kind of fish.

And So

That's what the sheet covers.  What I didn't get to when I originally made this, and what's definitely the least easy to make audit criteria for, is store policies.  For stores, this is fairly basic: be predictable, label your sections, don't have socially invasive policies (like demanding your employees greet the customers throughout the store), maybe implement sensory-friendly hours and have a recovery room, that sort of thing.

For a home, it's significantly more complicated.  I still think a recovery room or somewhere quiet and comfortable the autistic person can retreat to, to cool down, is very important.  For me, growing up, that was my room.  I wasn't made to share a room with my brother, so the space was always mine, and it was always safe to return to.  For larger families and families without the option to give their autistic children separate rooms, a closet might serve this purpose, or a space outside.

The problem with trying to make a one-size-fits-all sheet for autism-friendliness is that autistic people are very NOT one-size-fits-all.  Because the diagnosis is such a trash bin, all kinds of people with all kinds of needs get thrown into it.  So you really need to look carefully at what your autistic loved one needs, what they're good at, and what they struggle with.  If they have executive function difficulties (issues planning their day, breaking a task into smaller tasks, organizing themselves), then setting up a calendar and rewards would be a good plan.  If they don't, those things might help, but they won't have as major of an impact.

In general, be clear and upfront about expectations, whether they're social expectations ("you will sit at the table until everyone is finished eating") or chores ("you will take out the trash on Wednesday evenings").  Spell this out on a schedule if this is possible.  I make use of Google Calendar in my household, and my spouse and I have shared our calendars with each other so there are relatively few surprises.

Finally, try to keep positive things available in the house.  This also varies widely by the autistic person.  Perhaps a favorite food can be kept in stock, or a favorite scented product, or a toy.  Perhaps the person loves watching bicycle tires spin, or a particular TV show.  Whatever it is, consider it like self-care for the autistic person... because it is!  Some neurotypical people swear by the soul-restoring benefits of drinking tea, or reading a book, or listening to favorite music.  Autistic people can enjoy these activities too, but they may also enjoy watching lava lamps, staring into bright lights, or putting objects into lines.  Just because these activities fall outside the norm doesn't make them any less valid.  Make sure these soul-restoring things are reliably available to your loved one!

I hope this helps you make your home a friendlier, happier environment for everyone.  We're all stuck inside at the moment, so the more positive "inside" is, the better!

Looking Forward, Looking Back (2020)

Normally I do this sort of thing in January, but because of complications hosting Chris' younger brother, it just didn't happen.  Then the coronavirus stuff happened, and now the future is really kind of uncertain overall.  Still, you can't just sit on your hands and expect everything to work itself out neatly for you, so here's my best effort at my goals and future planning.  Things may change, but that's life, and that's okay.

Typically I want my goals to be SMART: Specific, Measurable, Achievable, Relevant, and Time-bound.  This year, stuff is so up in the air that I'm not sure I'm going to rigidly adhere to those excellent criteria. 

2019's Goals:

1.  Exercise at least 3 days a week, at least a half hour each session, minimum.

I can't decide whether I succeeded here or not.  On one hand, I didn't have a regular Wednesday exercise day like I'd envisioned.   On the other hand, I definitely did go walking with my friend Tsushi nearly every week, and sometimes those times involved tramping through the outdoors picking wild food.

Life kind of went haywire starting around October in my personal life and in one friend circle, and I ended up being moving crew a lot for a significant amount of time.  It was great exercise.  On the flip side, I got the flu around that time.. which meant I got almost no exercise for a whole week.

I don't feel great about my progress on this goal, but in an effort to be kind to myself, I'm going to note that I technically achieved this... just not the way I wanted to.  One of the books I read recently notes that indoor exercise, the gym, my exercise bike, etc, is not really a good environment for humans, ie: boring.  So you want to do more with the outside.  I'm just not sure how I feel about going for a walk in biting winter winds.


2. Finish my catching up on the MBMBaM podcast and get started on the wider range of podcasts I've already set up for myself.

I succeeded!  And then promptly fell behind again!  But I did branch out to new stuff.  Sadly most of the blog-relevant podcasts turned out to be dead ends.  Still, I've gotten to bone up on a lot of more self-care relevant things, like mythology, books, and new/interesting ideas.  So, a success!  At least as written.  I don't know how feasible keeping up-to-date on 18 podcasts is, but that's how many I'm subscribed to.

If you have disability podcast recommendations, especially ones related to current news and issues, I'd love to hear about them.


3. Quantify the environmental downers around the house I can be susceptible to, and eliminate or treat the issues if at all possible.

This one I didn't entirely succeed at.  Or to be more precise, I hit a dead end.  The idea was to find stuff besides mold and the algae that messes me up, but in all honesty, we couldn't find anything.  *Something* is probably messing me up and making me generate so many histamines, but it's not my diet, and it's not really my bedding either, given that I wash that once a week in hot water.

We could still shell out to re-tile the master bathroom (an area that was noted to be slightly moldy in the house inspection), and that's on the list of home repairs I'd like to have handled, but it's expensive, and the money isn't there right now.

I'm stalled on the histamine issue, too.  Vitamin C doesn't seem to be doing the trick, so perhaps when I can breathe again, I'll look into trying specific herbs or other avenues.  I simply haven't had the energy since about October.


4. Pick up an autism-related volunteer or paid job.

I did this!  And then there didn't seem to be enough work for me, so it sort of fell through after a few months.  So uh.  Success?  Failure?  Failcess?  I'd hoped to use this to get more hooked into services and people, but that didn't really happen.  So probably closer to failure.  I'm a little frustrated about this because I had a car and mobility, and now I don't as much, so trying to get a job at a further place would be significantly more difficult.

2020's goals:

1.  Gather and prepare more wild food.  

There's a few reasons for this.  First, it helps to have an additional food supply besides the grocery store.  We're not in danger of starving or running out of food money anytime soon, but stretching it as far as we can is smart.  Second, having a diverse diet is good for everyone, but especially people with unsteady biological systems, like myself and other autistic people.

This is a young dandelion greens salad I made a few weeks ago, with olive oil and salt. I'd like to eat more wild salads like this, but dandelions have to be picked very young or they're INCREDIBLY bitter.  

Third, the organisms that you come into contact with and consume in wild food can help strengthen and diversify your gut bacteria, which means less digestive issues.  This is very good news for me, because I have gut issues already and have for decades.  

2.  Pick up a volunteer or paid job.

Strictly speaking I already have this, at least in name, but in practice I'm just not sure how much work is actually going to come from it.  When the quarantine lifts, I may ask further in that organization.  I may also simply look into work unrelated to autism, like the local library.

My spouse is currently furloughed from his job, which is to say his job will be waiting for him in June sometime (hopefully).  Likely the local library is going to have a truly absurd number of job applications, on account of it being walking distance for a lot of folks.  Still, any income's better than none.  I have to think on it further, and there may be other places I could apply.  Libraries tend to be comfortable, safe places to me, though, and it's literally a mile's walk from my house. 

3.  Incorporate daily exercise into my life.

At the moment I'm not sure what this is going to look like.  I have Ring Fit Adventure, which I can use on days the weather is bad.  I have hiking/searching for wild food, which definitely qualifies as exercise.  I have my exercise bike and Dance Dance Revolution equipment.  And I have my bike.  So I do have options. 

What I'd like to do, I guess, is have at least 10 minutes of exercise built into every day (except Sunday).  That might be as simple as using Ring Fit every day, and whatever else happens, happens.  As video games go, it's kind and supportive while still being reasonably demanding, and you can absolutely work up a sweat playing it. 

I tend to do best with a schedule, so that's probably my best option.  And I should probably also build it into my morning routine so I have the good effects of exercise for my day, plus the accomplishment of doing that to boost my morale. 

My biggest irritation with it is that I have to move the coffee table to play the game, then move it back so we can use the space normally.  You'd think that wouldn't be much, but doing it day after day irritates me a lot for some reason.  Makes me not want to put the effort in. 

4. Survive the coronavirus/quarantine/etc.

This probably goes without needing an explanation, but the uncertainty of everything is kind of difficult for people that don't do well with change.  Such as most autistic people.  And myself. 

I'm less worried about physical needs, like food and shelter, at the moment, and more just entirely exhausted.  I'll write about why at a later point, when I'm not so emotionally overwrought about it. 

At any rate, with Chris home all the time now, and my still wanting to do this blog and possibly other work, there's going to be a lot of adjustments needed.  

Types of Stigma: Healthcare Practitioner Stigma

Type 7: Healthcare Practitioner Stigma

Healthcare Practitioner Stigma is when a health professional allows stereotypes about autism to negatively affect a patient's care.

When I first looked at this type of stigma, I wasn't sure why it was separate from public stigma and structural stigma.  I thought about it, though, and unfortunately, it's correct to have it be a separate category.  To explain why, we'll revisit Dr. Stephen Shore's often-quoted adage: "If you've met one person with autism, you've met one person with autism."

The Diagnostic and Statistical Manual, or the DSM, gives us words to describe different neurologies, mental illnesses, and conditions.  The World Health Organization puts out a series of numerical codes (ICD) to go with those words, which insurance and healthcare entities use.  Patients are coded with these numbers, which serve as a shorthand to who they are and how to handle them when those patients show up in an office.

I wrote a post about this back when I was working at an autism therapy center.  Four codes to summarize, in healthcare-ese, me as a person.  The same four codes a therapist might receive when taking me on as a client, or a doctor might receive when preparing to help me with a health problem.  When I went through school to receive my psychology degree, I was also taught about autism.  I didn't recognize myself in the diagnostic criteria, but it's what I was taught.

It is, in fact, what they're all taught, if they're taught anything.

With the diagnostic criteria being so unhelpful, and autism being such a broad and diverse group of people, it's maybe not surprising that healthcare practitioners would fall prey to making bad assumptions about autistic people.

The issue, of course, is that unlike random passersby, healthcare practitioners are trusted with the power to open and close doors to therapy and care.

If healthcare practitioners work on the assumption that all autistic people are dependents, or that all autistic people can or can't speak, or that we all suffer the same kind of depression, anxiety, or digestive disorders, their decisions will be skewed or even outright wrong.  Each autistic person should be taken separately, like any other human.  Every human has strengths and weaknesses, different biologies and different healthcare needs.

As a rule, autistic people tend to have more health problems, more fragile systems, and more challenges with mental health and wellness, so it's incredibly important to have competent healthcare practitioners who know to ask questions rather than making assumptions based on their schooling.

Yet of all the healthcare professionals I've had since getting my diagnosis, only one has made a point of asking lots of questions about me as a person, after I gave them my diagnosis.  Can you guess which one it was?

It was my therapist and LENS practitioner.  Y'know, the one doctor who has literally no excuse to not know better, given how many of her clients are autistic.

The size estimates for the autism population are still rising.  We need better understanding in our healthcare professionals.  Our lives and health depend on it. 

Types of Stigma: Structural Stigma

Type 6: Structural Stigma

Structural stigma is the existence of institutional policies or other societal structures that result in decreased opportunities for autistic people.

"Institutional policies" is kind of a mouthful, so I'll start by pointing out that it's not just referring to mental institutions or whatever we're calling the modern day insane asylums these days.  It's also not just talking about sheltered workshops or group homes.

An institution, in the broadest sense, is stuff like churches, schools, hospitals, governments, and other organizations.  An institution is an organization founded around a purpose, whether that purpose is religious, social, educational, or some other reason.  Institutions have rules, bylaws, norms, and unspoken expectations.

There are a lot of kinds of this stigma in existence, but the one I hear about from parents most involves Medicaid.  You see, support services for autistic people cost money.  A lot of money.  Since most parents aren't independently wealthy, they cannot afford to pay hundreds of thousands of dollars per year for the services their kids need to thrive.  What's a loving parent to do?  Certainly not watch their kid suffer for lack of help, or burn themselves out trying to support the family plus act as their kid's only (untrained and uneducated) support full time.

Instead, the typical answer, at least in my state, is to apply for Medicaid.  The government has money set aside to pay for support services in situations like this.  It's less and less each year, and because of the US's eternal suspicion of the poor (because being poor is SO FUN (/sarcasm)), you have to jump through about eleventy billion hoops to acquire that support, demonstrating in excruiciating detail that yes, your kid really does need this help.  It's a process that can take years, and multiple rejections even though the person's need is real.

Unfortunately, depending on what kind of Medicaid you receive, there may be income limitations.  Literally, your family or the autistic person themself might make "too much money" to qualify.  Let me remind you support services can cost hundreds of thousands per year.  The amount you can't exceed per year to receive full support, if you're a single working adult? $18,000 a year.  So you could be making $20k a year, barely have enough to make ends meet, and yet be expected to pay multiple times your yearly income in services.  Apparently, this is "fair" by the government standards.

What usually happens here is that families and individuals on the spectrum need those services, and need to be on Medicaid to afford them.  They therefore quit their jobs or take massively reduced hours in order to qualify.  The types of jobs that make the cut for these restrictions are usually high stress, unfufilling jobs without hope for advancement or further training.  Even if advancement is available, the autistic person or the family may need to turn down those opportunities in order to continue to qualify for Medicaid.

Thus, one reason for the massive amounts of unemployment and underemployment in the autistic population.

Another easy example is the educational system.  It varies widely on the school system, but in many cases, "special needs" children are segregated 100% of the time from their typically developing peers.  Sometimes this is done after assessing the child's skills and abilities, but sometimes merely having a diagnosis is enough to mandate immediate separation from your peers.  Sometimes entirely separate school systems are involved.  Often entirely different curriculums are involved.

I'm not going to pretend the neurotypical school system is flawless and that it's appropriate for every child to learn everything taught in a typical school system.  The school system actually has serious issues.  However, inclusion is mandatory.  Curriculums that challenge and spur the growth and development of each child, are mandatory.  These things are not happening in most school districts, and as a result, autistic people do not learn as well or as much as they're capable of doing.

Effectively, school policies are stunting our educational opportunities.

Due to this lack, autistic people may have limited higher education options, or even none at all.  We might be denied a chance at trade schools, at colleges, or even at internships or apprenticeships due to our lack of good grades, lack of diploma or GED, and use of alternative curriculums.  You'll note this phenomenon, too, ties right back into poor or no employment options.

I've named two major forms of structural stigma here.  There are many more, from churches excommunicating autistic people or refusing to allow them into Sunday school to hiring policies that don't allow for neurodiversity overall.  

Handling the Isolation: an Autistic's Advice

I ran across an article by Maxfield Sparrow pointing out, quite rightly, that I and other autistic people have more experience being alone and being isolated than most neurotypical people.  I was a social outcast for most of my schooling, which led to practicing self-isolation as they describe in this post.  I now have quite a bit of practice managing myself and these situations.  So now there's a pandemic and everyone has to be isolated.  Let's talk about handling isolation, shall we?

Sociability via the Internet

First and foremost, the Internet has lots of social options.  Just because you shouldn't go see people in person, doesn't mean you have to be a hermit.

If you feel alone and need people to talk to, know that there are thousands of communities full of people who likely feel similarly and are also reaching out for support.  Look into communities around your hobbies and interests.

Reddit is a good place to start for this.  There are multiple autism-related Reddit communities, but there are also places for knitting, book clubs, parenting, cooking, TV shows...  basically, if you can imagine a topic, there's probably a community somewhere for it.  Reddit is not your only option for finding these communities, either.  A bit of time spent Googling your interests can turn up a variety of options, like forums, IRC channels, YouTube personalities, and how-to guides.

Discord is another option.  While it was initially built for video game communities, there are now communities for creative writing, webcomics, city areas (here's one for Grand Rapids), gardening, and even knitting.  You can chat by text or voice with people about all kinds of things.  If you play video games, you can even stream your game to your friends in a virtual hangout.  I'll expand on this below.

I do not recommend upping your hours on social media, like Twitter, Instagram, or Facebook.  In my research and personal experience, time spent on social media tends to result in feeling worse about yourself and the world.  They also tend to run experiments on you, sell your data to whoever will pay pennies for it, and significantly limit the information they feed back to you.

Instead of passively following your friends and family on social media, consider calling them on the phone, texting them, emailing them, or using Skype, Facetime, or Discord to video call every once a week or so.  I personally prefer emails or text due to the suffering the phone causes me, but you may find the phone a much more satisfying option.  People are different, and that's okay!

Finally, you can have a virtual party or hang out time.  You don't have to give up your movie night, board game night, or other night out just because you shouldn't leave your home.

Movies and TV: Rather than all gathering at a single house, each person can relax in their own home yet watch a movie or TV show together.  The classic example of this is the Chrome extension Netflix Party, which syncs your screen with all of your friends' screens, so nobody gets surprised first.  But, there are actually a lot of options for having this kind of experience.  Binge watch a favorite TV show with your friends, or try out a new show together!

Board Games: Did you know you can play board games online?  Specifically, did you know there's a virtual tabletop application called Tabletop Simulator, in which you can play games like Risk, Battleship, Settlers of Cataan, Apples to Apples, Clue, and thousands more.  There's also an app called Tabletopia that works on phones and does the same kind of thing.  If you love board games and miss being with your friends, why not give these a try?

Video Games: Many gamers already make use of technology like this, but Twitch, Discord, Mixer, Periscope, Livestream, and a ton of other services offer the ability to stream your gameplay to an audience.  You can show off a favorite game, or introduce your friends to something new.

Not interested in being on display?  That's okay, you can play with your loved ones instead!  There are hundreds of cooperative video games.  Here's a link to a drawing party game that's free for the next few weeks.  There are also lots of more indepth games, like Path of Exile, which is a fantasy online multiplayer game.  Or Terraria, an open world survival/exploration game.  If you have a Nintendo Switch, Animal Crossing: New Horizons just came out.  You can escape to your own island, explore and reshape the place as you like, build a community of cheerful animal friends, and relax to a great soundtrack.  There's even an option to visit your friends' islands, so you can play together too.

Knitting Group/Book Club/Interest Group: Facetime, Discord, Skype, Zoom, Google Hangouts, and WhatsApp all have group call functionality.  Get everyone the same app, set up your phones and/or webcams, and get out your books/knitting needles/D&D character sheets.

With most of the world on lockdown during this pandemic crisis, lots of people are turning to the Internet to meet their social needs.  Thankfully, there's a ton of stuff for everyone.  If you're starved for people, now's the best time to look into your options!  There are so many ways to spend time with your friends and family without worrying about infecting them, and new and interesting friends could be right around the corner.  The Internet has groups who love your hobbies as much as you do, just waiting for you to join them.

A last but important note: If you are suffering any form of mental illness, and the isolation is making it worse, there are options available for you.  Besides the hotlines, many therapists are doing their work via phone or video call, so it's worth it to check with your therapist and see if you can get an appointment without risking infection.  At least two of my friends have already had appointments with their therapists over the phone, so the tele-health option does work.

Remember: Depression, anxiety, and other forms of mental illness are real and legitimate forms of pain, just like broken legs and bruises.  Help is available to you, and you do matter.

Self-Care and Self-Improvement

Second, consider this time a chance to do some things for yourself you never seemed to have time for.

Self-care often falls by the wayside in the hustle and bustle of life.  However, it's extremely important, especially in trying times like these.  Read an old favorite book, or take a new one from your stack, if you have one.  Schedule some time to drink tea or coffee without looking at your phone.  Take a luxurious bath, or start a video game you've been meaning to play.  Call friends or family and talk for a while.  Play a silly phone game you love for a few minutes.  Listen to old music you love, or new music you've been meaning to look into.  I've spent some of the time rereading old favorite book series and trashy pop literature, because it's comfortable and I need the comfort right now.

Whatever relaxes you and feeds your soul, make time every day to do those things.

You can also try new activities. Have you wanted to take more walks outside?  It's getting warmer, and you can keep your distance from others while you do so. There are also free exercise classes of all kinds on Youtube, like aerobics, tai chi, yoga, and more.  Or perhaps there's a subject you've been meaning to learn about?  There are free Ivy League classes available online.  You can learn to code in HTML, CSS, SQL, Javascript, and a lot more languages for free.

Have you meant to try meditation or some kind of mindfulness to help with the stress of life, but there never seemed to be a good time to practice?  Pick up Headspace or Calm.  Both of these are quality apps with significant sections of free content.  They can help you learn to manage the stress of the isolation in a healthy manner, and give you a break from the worry about the future and the present, and the fear- and frustration-laden cycles the news is going through.

Cooking is another thing you can do at home.  Since grocery shopping is an essential activity, you can try recipes you wouldn't normally have time for.  Make a big batch of soup or a favorite dish and freeze some for later.  Stretch your horizons by making a vegetarian dish, or even something dairy-free or gluten-free.  Try new ingredients, or pick up a new kind of spice or seasoning.  The Internet is full of recipes.  I particularly like Budget Bytes, but I also reference the megasite All Recipes as well.  With some time on Google, you may be able to find specific sites that cater to your dietary needs.

Overwhelmed?  Can't think of anything to cook?  There's a website for that.  Actually, there's several, so here's another.  Click the ingredients you have available, and the website will show you links to recipes using those ingredients.

Finally, remember that you can easily keep a six foot distance from others outside.  As the weather warms in the northern hemisphere, public parks can be your safe place to go when cabin fever sets in.  Spending time in green spaces, such as gardens, forests, and public parks, has been repeatedly shown to improve stress levels and quality of life overall, so why not stop by your local park?  You could even meet up with a friend and chat while keeping a safe distance from each other.

Whatever your interests, there is something for you.  Stay safe out there!