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!

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.  

Worth Your Read: Saying "I Love You" Autistically

http://www.thinkingautismguide.com/2020/11/recognizing-how-autistic-children.html

It's strange, that in a world so full of different and diverse people, it can be so difficult to accept that others express simple sentiments like, "I love you" differently than you personally do.  

No human, myself included, seems immune to this fallacious assumption.  This author, Ann, has written a very short list of nonstandard ways autistic people might express love, which I'd urge you to look over.  See if you can find one or two you personally display, or your loved one does.  

Having read the list myself, I would honestly say that I feel each of the four examples given actually falls within the "Five Love Languages" categories... it's just that they're so non-standard that they're not even recognized as such.  

The second situation, for example, with the autistic person downloading and presenting information they value to the loved one.  That's a form of the fourth love language, quality time together.  It's initiating that quality time, and ideally, the loved one shares in that enthusiasm and interest. Maybe not to the same extent the autistic person does,  but enough that the "togetherness" aspect is fulfilled.  

This behavior actually isn't specific to autism.  Requests for attention and a shared experience can be as simple as "oh honey, look at that bird outside" or "did you see what happened in the news today?"  Or they can be as large as "let's go see a movie together" or "want to start a new TV show on Netflix?"  It's the method of the request, not the actual category, that people don't seem to understand.  

The first and third situations are simply iterations of the golden rule: "treat others the way you want to be treated."  Alas, the golden rule is far too simple when it comes to neurodiversity and the broadness of human experience.  A better version (that is harder to teach to small children) incorporates doing your best to treat the person well by their own standards.  

Most neurotypical people, naturally, have no particular issue with regular eye contact or small talk, and may even cherish these things as emotional "togetherness" signs.  So avoiding them is not received as the love it's meant to be, but as the opposite.  

Something the article didn't mention is that it's not unusual for an autistic person to say "I love you" once, and then never again, contentedly assuming their loved one knows this still applies because it's been said and not recanted.  Unfortunately, neurotypical people tend to require repetition to believe it.  Especially after an argument or upsetting event.  So this is another example of a miscommunication between autistic and neurotypical people.  

I can't remember, offhand, how affectionate I was as a child.  I would guess "not very" especially after I became a teenager.  I don't feel I was a very warm person, despite my strong sense of justice, fairness, and fiery temper.  That's changed somewhat since I've been doing LENS and more traditional therapy, at least I think it has.  I feel more able to empathize and express concern for others in ways they receive.  

It's still difficult, mind.  The way people receive love and the way I tend to express it don't often match up.  I do okay with listening to people, since pretty much everyone likes to really be listened to with 100% of the listener's attention.  My brain doesn't typically give me a choice about the 100% attention thing, which comes in handy sometimes.  After that, though, it gets sticky.  

It's of some comfort to me that the Five Love Languages book and associated theory exists because neurotypical people don't get this right on a regular basis, too.  It feels to me like it's still somewhat well known in therapeutic circles, but less so in common knowledge now that it's not the latest hot trend.  

The last thing to say here is that yes, your child loves you.  Maybe they aren't expressing it in a way you receive, like the examples in this article.  Maybe they're suffering so much from medical issues like chronic pain or epilepsy that they can barely express their love.  But please, please don't convince yourself your child doesn't love you.  Listen to us.  Become curious about how we think and why we do the things we do.  I guarantee we'll make more sense if you do.  

Worth Your Read: An Autistic Experience with the COVID vaccine

http://www.thinkingautismguide.com/2021/03/getting-covid-19-vaccine-while-autistic.html

The COVID-19 pandemic has gone on for almost a year now.  While the vaccine rollout continues in the US, it's suffered from poor organization, and there is no centralized method to get an appointment.  Distribution varies by the state.  

In Michigan, I'm told the best option is to wait until your group is eligible, and then sign up in as many places as possible.  Multiple pharmacy chains have supplies of the vaccine, as does the medical system (in my area, Mercy Health or Spectrum Health).  Sign up with every entity you can.  Just be sure to cancel your place on the waiting list with the others once you've gotten your dose.  

At the moment, I'm not eligible for a vaccine.  Last I checked, I'm on the younger side of things and insufficiently medically vulnerable.  To my relief, though, my parents and my one remaining grandparent have all had their first and second shots.  

There will likely be boosters and such for the variants, but even having that baseline immunity in the ones I love is a great weight off my shoulders.  Like the author of this article, I miss giving and receiving hugs from my parents (and others).  

Regardless, this article describes one autistic person's experience receiving the vaccine.  It can be very helpful to know what to expect when going into an unfamiliar situation, and Kate, the author, does her best to describe it.  

Unlike the author, I'm not rushing to get my vaccine.  I strongly believe in the importance of herd immunity and don't even slightly discount the importance of getting the vaccine ASAP.  I just happen to also be aware that sometimes testing doesn't turn up all possible side effects.  

Since my job does not involve routine contact with the public, and can be done from home, I have the privilege to wait a little longer to see if any interesting additional side effects turn up so I can be more prepared.  My hope is that the new style of vaccine, the mRNA variety, might truly be safer than the older style.  

Either way, my spouse and I hope to get the vaccine in the next half year or so, state and supplies allowing.  Until then, and probably after then, we'll continue to wear masks, wash our hands, disinfect surfaces, and self-isolate.  I can't wait for spring and the warmer seasons, though.  Staying inside all winter hasn't been good for me, and once it warms up I'll be able to forage for wild food and enjoy nature again.  

Worth Your Read: Doing More Harm Than Good

https://www.scientificamerican.com/article/has-the-drug-based-approach-to-mental-illness-failed/

The overuse of pharmaceuticals has been a common subject on this blog.  There is, however, a significant difference between me complaining about it in my personal life, and having good journalism backed up with statistics say the same thing.  

I can complain about the systemic treating of the symptoms, not the problem, until I'm blue in the face, and I will be ignored.  In part because lived experience simply isn't valued when the source is a minority.  But also because people in power do need to look at the larger picture.  

The problem, of course, is that most mainstream media and scientific publications don't care to investigate this sort of thing.  Or if they do, they don't publish it.  And so the heavily flawed, "pound of cure over the ounce of prevention" system that feeds the unending greed of medical corporations continues unchecked.  

Actually, this interview goes one step further and suggests that many psychiatric medications don't even help some people in the short term, which is a rather disturbing thought. Effectively, people are being prescribed biology altering cocktails... for nothing.  

We know, of course, that not all kinds of depression respond to pharmaceuticals. The industry standard term for this is "treatment resistant" depression.  Which is both misleading and inaccurate, because the only treatment they're trying is pills.  Dietary changes, exercise, nutritional interventions, and basic therapy are ignored in this calculation.  

Which, if the person is simply suffering a massive lack of vitamin D (which can cause chronic fatigue and low mood climate, among other things), yeah.  No amount of neurotransmitter tinkering is going to fix that.  Going outside in sunlight on a regular basis, or taking a good quality vitamin D supplement will, though.  Speaking from personal experience here, in fact.  

I particularly liked the section in this interview regarding capitalism.  It says a lot in a very short amount of words, and all of it is right if you ask me.  Many of his proposed improvements are also excellent.  I hope you find this reading this interview as useful as I did.  

Worth Your Read: Avoiding Ableist Language

https://www.liebertpub.com/doi/10.1089/aut.2020.0014

Nobody wants to be the racist uncle in a discussion.  The thing is, many racist uncles (or aunts, or grandmas/grandpas) don't honestly feel they're being racist.  They simply don't know better or don't care to learn better.  

Hopefully no one reading this blog is the latter sort of person.  For the rest of us, it can be really simple to accidentally slip into racist uncle territory without realizing it.  That's why it's so important to listen to black and brown people, and to educate yourself using the resources they've provided over the years.  

By the same token, it's important to listen to disabled and autistic people.  Essentially, ableism is racism, except instead of dehumanizing people with a certain amount of melanin in their skin, it dehumanizes people in wheel chairs, people who score low on IQ tests, and/or people with developmental disabilities.

I've seen a reasonable amount of discussion of various types of ableism.  Perhaps the most widespread debate I've seen is between person first (person with autism) and identity first (autistic person) language.  

The person first vs. identity first debate in a nutshell

Person first: Meant to stress the person's personhood before their conditions.  An alternative to using medical-terms-turned-derogatory-terms, such as "retard."  Preferred by the community of people with intellectual disorders and the occasional person with autism.  

Identity first: Meant to stress how a condition can be experienced as inseparable from the person.  Autism is a whole-life-affecting condition.  If you could somehow remove the autism from me, I would not be the same person.  I would not, in fact, be even recognizable as me.  Preferred by me and most autistic people I've seen weigh in on the subject.  

There are a number of others, including whether autism should be cured, how a person's support needs are described, the ever-dehumanizing "high-functioning" and "low-functioning" labels, and how things like meltdowns, self-injurious behaviors, and stimming are described.

The point of this article is to summarize what's been said and overall agreed upon in the course of a couple decades.  The audience here is mainly autism researchers, but to be honest, this was a good read for me, too.  

Like racism, ableism is systemic to the US.  A person in a wheelchair is, on average, assumed to be less capable on all fronts than someone who isn't... even if the criteria have literally nothing to do with physical capabilities.  The same mentality (in a less quantifiable form) goes for autistic people, even though we can be incredibly skilled and knowledgeable in our areas of interest.  

This mentality is fed to us in popular media, in how healthcare professionals treat us and the diagnosis, and how friends and family treat us, among other things.  I did a series a while back on types of stigma, which is rather relevant to this issue.  

All this to say I've swallowed my fair share of poisonous ideas in regards to what people with disabilities are capable of.  Myself, frustratingly enough, included.  There's a handy swap table of ableism to acceptable phrases and words in the article, which I think I'll try to keep handy.  I can safely say my own writing includes some of these "should be avoided" words.  

Worth Your Read: Ask vs. Guess Culture

https://tellmevarric.tumblr.com/post/613906274411823104/ask-culture-and-guess-culture

My spouse ran across this concept from the Internet and shared it with me.  It's been very helpful in improving our communication. 

The linked thread is somewhat long (worth reading the full thing, though!), so I'll summarize as best I can.

There are two ways of making requests of others.  Say we need to get from Home to Point B, don't have the money for rideshare, and don't have a car. 

The first is throw caution to the wind and directly ask.  You might call or text friends and family, saying, "Hey, could you give me a ride to Point B?  My car's in the shop right now and I'm stuck. : ("  This is Ask Culture, where you can ask for whatever, but you need to be ready to take No for an answer. 

The second is to hint at people, and hope they'll volunteer what you need without you having to ask.  It relies on shared expectations and values.  So you might call or text family, and when they ask how you're doing, you might say, "oh, not great, my car's in the shop and I've got an appointment at Point B soon."  This would clue the other person into your need, and, since they care about you, they might offer you a ride if they're able. 

You have not directly asked, and so if they can't offer you a ride, they don't need to risk hurting or disappointing you by telling you no.  Instead, they might say something like, "Oh, that sounds terrible.  I wish I wasn't home alone watching over the kids- they've got the flu right now."  The person has thusly let you know, by way of "why they can't give you a ride to Point B," that they are unwilling to give you a ride to Point B.  This is Guess Culture. 

Now, in the original Facebook post my spouse shared with me, someone opined that these two Cultures are equally valid. 

You can probably see where I'm about to head here. 

Hi, I'm autistic.  One of these cultures is how I operate naturally, and one of them actively, pointedly, and directly disables me.  Equally valid?  Don't be ridiculous. 

Guess culture is rife with literally everything I'm disadvantaged at: advanced theory of mind, reading body language, subtleties, talking around things rather than directly about them...  All because people don't want to say no or be said no to?  Holy forking shirtballs, people. 

The world does not end if someone turns you down.  It may be disappointing, and you may need to find another option, but.  Seriously.  Nor does the sky fall if you have to say no to someone.  If it upsets you that much to do either of those things, you really need to find out why these very normal parts of life are so upsetting to you, and get to work on changing that and learning to be more open about your communication.  Life involves No. 

Another autistic in a different reposting of this thread said, "guess culture is to autistics as an ice-coated cobblestone beach is to wheelchair users."  This is pretty well accurate.  At least the beach can't help being what it is.  People can choose how they communicate. 

My spouse and I come from very different backgrounds when it comes to this.  My family, I think, did a mix of Ask and Guess cultures, but because I am who I am, I default pretty heavily to Ask Culture.  My spouse, on the other hand, comes from a pretty thoroughly Guess Culture background.  Needless to say, communicating has been difficult at points. 

The cycle is easy to describe.

I, being somewhat oblivious and exhausted at many points, miss the hints that he tries to give to clue me in that I should offer something.  In turn, he becomes snappish or sad because I haven't offered the thing he's been cluing me in that he wants.  At some point, an argument starts between us for some unrelated-but-valid reason.  The issue escalates well beyond reasonability, and at some point I learn that my spouse is upset because he wanted me to offer this thing and I didn't. 

I become even more frustrated because he didn't simply ASK for what he wanted, and he tells me he didn't ask because he didn't feel comfortable doing so.  I tell him I can't read minds and that if he wants something he needs to ask for it, citing that I'm autistic.  Both of us leave the discussion frustrated, hurt, and sad. 

Thankfully for both my sanity and my marriage, my spouse is working on practicing Ask Culture.  Because my spouse defaults to Guess Culture in times of stress, I am also working on recognizing the signs that I'm being Guess Culture'd at.  I can then choose whether to ask straight out, "Are you Guess Culturing me for something?" or handle it in some other way. 

I don't really appreciate having to put in the extra effort when I'm stretched thin as it is, but since I love my spouse, it's a price I'll pay.  I'm hopeful that at some point I won't need to, though.  Guess culture is neither kind, nor helpful, nor supportive for autistic people.  It is rife with passive-aggression, misunderstandings, and chronic over-thinking.  The only reason to learn to deal with it is because other people don't give you the option not to.  

The Autism Community Presents: Resources for These Interesting Times

http://www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html

I did my own version of this a few weeks ago, but as is typical, you get more and better information when more people contribute.  

This list covers a lot of topics, including:

• Strategies and tips from autistic people on how to manage this crisis.
• Coronavirus (COVID-19) information, to help counter the misinformation that's out there.
• Plain language guides so everyone can understand the coronavirus situation.
• Resources, such as emergency planning forms, instructions for face masks and hand sanitizer, and suggestions for how to keep connected socially while social distancing.
• Links to advocacy organizations and their COVID-19 resources.
• Guides to self-advocating in medical settings.
• Homeschooling and "learn something new while you're home!" resources.
• Links to legitimate charities that will actually use your money to help others instead of their CEOs' yacht funds.  

There's a lot here and I'll probably work through it slowly, picking and choosing the most relevant-sounding links in each category.  What I've gotten through has been very helpful, though.  

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.  

Types of Stigma: Associative Stigma

Type 5: Stigma by Association

Stigma by Association occurs when the effects of stigma are extended to someone linked to a person with autism.  This can also be known as "courtesy stigma," "affiliate stigma," and "associative stigma."  This form of stigma can affect anyone around the autistic person: parents, friends, siblings, even significant others and spouses.  It has been noted to be a problem many parts of the world, including China and India as well as in the United States. 

This stigma is most often seen in the isolating effect on a family with one or more autistic individuals.  The autistic person, perhaps a small child, but even an older dependent, is seen as a burden or even a danger.  As a result, the family is not invited to social gatherings, the parents are perhaps told to "control their child," and members of the family may even be shunned in school, at work, or at the grocery store. 

It's as if being related to an autistic person somehow makes the family (or other individuals) irrevokably different and other.  This is, of course, utter nonsense.  Just as an autistic person, having received their diagnosis, is no different than they were before, the associated people are no different for their relationships with that person. 

The issue is somewhat confounded by the fact that autism somewhat runs in families.  Autistic traits can often be found in our parents and our siblings, which can then underline others' judgmentalness and seemingly make acceptable the alienation of those people.  All forms of stigma are unjust, of course.  This particular stigma blindly ignores the value of neurodiversity in favor of blindly idealizing some imagined "normalcy."  In reality no person is normal. 

Typically the way families fight the isolation is by forming or joining support groups and other safe havens.  Local places like Autism Support of Kent County will sometimes offer parent support groups or local directories to health care, lawyers, respite care, and other inclusive businesses.  More national or regional operations, like The Arc and The Autism Society in the United States, offer immediate information as well as more regional information and directories.

In these inclusive places, the norms are different.  If your kid is having a meltdown, the other adults in the room are likely to be understanding rather than myopically insisting you "control your child" or some other idiotic variation. In such places, the alienation isn't so powerful, and families can feel more free and able to be themselves.

Another way to fight this stigma is to educate your community.  One family in my church basically went in front of a microphone during a church event and gave the "our lives with autism" speech to all those listening.  They educated the congregation about their personal struggles as well as establishing connections and support within the church.  This was incredibly brave of them, and it took a lot of energy to do. 

This kind of effort is difficult and not always possible for families with autistic individuals, because energy and time are often such limited resources.  However, their effort helped pave the way for other families with autistic or neurodiverse kids to find connections.  It raised awareness about these issues overall, which resulted in more church discussion on the subject.  And in some ways, it normalized my adult autistic existence in the church. 

Regardless of what way you choose to fight this stigma, finding or making inclusive groups is important.  Managing life with additional challenges is hard enough.  Don't do it alone.  

Types of Stigma: Label Avoidance

Type 4: Label Avoidance

Label Avoidance is when a person chooses not to seek out a professional or school diagnosis, therapy, or even community support to avoid being assigned a stigmatizing label.

You can find this behavior in both parents and adults.  It derives from the other types of stigma.  When people have mistaken ideas of what autism is, what it means for the future, and what autistic people are like, they can be very closed-minded to even the thought of being autistic themselves, or someone they love being autistic.

The classical example of this is the parents of an autistic child noticing their child is different, taking the child to the doctor, receiving the suggestion to get them screened for autism, and promptly going home declaring, "well that's clearly not it, that doctor is a hack."  This, and variations thereof, are repeated endlessly in "my family's experience with autism" books.  Naturally, ignoring a developmental disability does not make it go away.

Usually it's the mother that gets past the reluctance first.  She sees her child struggling and understands that something is up, regardless of how she feels about the label.  She eventually takes the child for testing, and receives the label.  There may then be a period of anger, resistance, and mourning while the parents adjust their expectations for their child and come to grips with reality... but this mourning is often overblown.  The stigma about autism is that it destroys lives and the child can never have anything close to a "normal life."  (I have Opinions about "a normal life" and its expectations, by the way.)

You can also find this behavior in autistic adults and teens.  There are several reasons for this.

First, there's the same basic misconception that parents start out with: "If I acknowledge this difference and receive this diagnosis, my life [my child's life] as I've dreamt it will be over and I'll [they'll] be confined to an institution."  The reality is that a diagnosis doesn't change who the person is, nor does it change their capabilities.  It's simply a word or some words that you can use to start understanding yourself or someone else, or even use to acquire support in doing what you want to do with your life.

Then there's the fact that autism has been used as an insult in some circles (including in online video games) to describe people who are being thoughtless, rude, stupid, cruel, or otherwise acting intolerably.  While these adjectives are a poor description of most autistic people, this alternative definition can fuel a rejection of the psychological diagnosis.

There's also the deep end of, "I'm a person (not a cripple/weird/whatever) and I want to be treated like everyone else." Often, we, like any person, want to succeed on our own merit.  After years of being expected to act "normal," autistic people may reject any label that would acknowledge the impossibility of that expectation.  Or even after acquiring the label, refuse to use it in college or in the workforce (when we typically have a chance to make our own decisions for the first time).

In general, because of how this stigma and the other stigmas work, I tend to only tell people to seek out a diagnosis if they think it'll help, and not bother if they're not sure or think it'd be negative.  In a perfect world, the diagnosis would only help people and give them a path forward, a community, and a better understanding of themselves.  In the world we live in, all these stigmas and more exist, and we have to do the best we can under the circumstances. 

Types of Stigma: Perceived Stigma

Type 3: Perceived Stigma

Perceived Stigma is the belief that others have negative beliefs (or Public Stigma) about autistic people.  This goes hand in hand with the previous type, Self-Stigma, because humans tend to believe that others think the same way they do.  

So if you believe autism is the Autism Speaks' brand of evil possessing demon, you tend to also assume others believe this as well.  If you happen to be autistic and you believe this, even unwillingly, it can feel like others believe you're the devil incarnate.  Needless to say, this is incredibly destructive to a person's wellbeing and ability to trust and enjoy other people.

I haven't run into a lot of autistic people that believe they're possessed by an autism-devil.  What I do tend to see is people that self-sabotage or at least have beliefs that hold them back from living their best lives.  They have internalized significant self-stigma, and then make the classical human error of assuming everyone else believes the same things.

So rather than saying, "I'm evil and everyone believes I'm evil," they might say, "I'm incapable of holding a job because I'm autistic and everyone knows that, so there's no point in trying to get a job."  The person will then only halfheartedly apply for jobs, not seek out opportunities, and even not take advantage of options directly in front of them.

Or they may hide their diagnosis, believing, "I'm terrible/worthless/incapable/a failure because I'm autistic and if anyone finds out I'm autistic, they'll believe I'm terrible/worthless/incapable/a failure also."  This also crosses into next time's stigma, Label Avoidance.

You can also see this stigma in parents of autistic children.  When your kid is having a noisy meltdown in a public place, the typical assumption made by the parents of that kid is that everyone is staring and making the assumption that it's a tantrum because those parents are lazy and terrible.  This assumption may or may not be true.  People do tend to look at a source of noise, and there are certainly enough personal stories of passersby accusing the parents of poor parenting.  (An aside: "Control your child" is about the dumbest demand I've ever heard, given that a child is literally a small human and all humans have free will.)

In all honesty, though?  My understanding is that a lot of parents see that meltdown situation and go, "been there, done that, it sucks to be those poor people."  I personally (not a parent) just tend to pay as little attention as possible.  The screams hurt my ears and wreck my brain, but if it's a tantrum I don't want to signal the kid that this is an acceptable method of getting what they want.  If it's a meltdown, more attention won't help but could very well make the meltdown worse.

The trick about this type of stigma is that it's not required to be accurate.  There is a significant public stigma around autism.  However, most people don't have a full or even partial understanding of that stigma, or even the ideas behind it.  Most people just don't know a lot about autism at all, in fact.  Autism, in addition, is often an invisible disability.  So assuming people are automatically demonizing you isn't productive or even accurate.

Types of Stigma: Self-Stigma

Type 2: Self-Stigma

Self-stigma happens when an autistic person (or family member of an autistic person) internalizes public stigma.

Last week I gave some rather hideous examples of public stigma.  While some autistic people are resistant to a certain amount of the vile fearmongering lies spewed out by Autism Speaks and similar organizations, we still live in the same spaces as everyone else.  With sufficient repetition, we may begin to believe these venomous ideas.

A relateable example to start with: I have rather thoroughly internalized the idea that I will never be beautiful.  This was never told to me directly.   Instead, it was repeatedly shown to me.  The women on television, on the covers of magazines, and in real life who are usually considered beautiful or attractive are very thin.  Their hips are narrow, and they have little, if any, extra fat.  They are usually of average height.  Their complexions are (unrealistically) flawless.  They do not have bad hair days.

None of this is me.  It's literally not in my genetics to look like that.  It's not in most peoples' genetics to look like that.  The standards are intensely unfair and unrealistic, and poisonous to self-esteem.  In this particular case, fortunately, I don't give a crap about being beautiful, because I value other things much more highly.

A more direct example now: stimming.  Stimming, as I've pointed out recently, serves a purpose.  It helps the person regulate themselves or express emotions (positive and negative), which results in a happier, healthier person, and fewer meltdowns.  Pragmatically speaking, you would think everyone would be on board with this plan.  Fewer meltdowns and happier people is good, right?

But no, because it's "too weird," autistic people are taught (via ABA or simply others' reactions) that it's not okay to stim.  We're told this is bad behavior, and that we're bad for doing it.  We're told it makes others uncomfortable (because others' reactions and then their decisions after those reactions are somehow our problem).  Essentially, we're shamed for being ourselves.  Like the impossibly perfect celebrities on TV and the covers of magazines, this is repeated over and over.

There's also the ideas that autistic people are damaged, can't feel emotions, don't have empathy, or in some really special cases, that autism doesn't even exist.  There's an account here of a person's experience with a few of these ideas.  Thankfully for her and for all of us, she's resisting and calling out those toxic ideas.

But I can say from personal experience that some people do believe them.  I actually had a friend tell me that she'd believed for years that I had no empathy until I literally called it out as a stupid myth.  This was after I'd spent years literally living my empathy: sharing her trials, being there to listen when she was upset, even bringing small treats or activities for special occasions.

This friend is not stupid, by the way.  She's a very caring, intelligent, lively human, and I'm glad to be part of her life.  My anger and sadness about this revelation was balanced by the fact that she was brave enough to admit it to my face and face the consequences, and the fact that, even believing that garbage, she was still willing to befriend me when I'm not the easiest person to befriend.

My best guess is that she was told this thing, that autistic people don't have empathy, relatively young, by someone whose authority she trusted.  She therefore internalized it without question, and because massive errors in communication can look like a lack of empathy without context, it was reinforced at points.

If anyone didn't know?  Yes, I do have empathy, thank you.  Autistic people can be jarringly pragmatic, or not recognize a situation as one meriting a more sensitive response, but that's not a lack of empathy, it's a difference in how the person views a situation.  

Venomous ideas like this can destroy marriages and families.  They alienate us from our communities.  They also drive autistic people to suicide and increase suicidal thoughts.  Depression and anxiety are considered comorbid with autism, meaning that those mental illnesses are commonly found in higher rates in autistic people.  No surprise, given all these ideas we've partially or entirely internalized.

I'm 31 years old, having gotten my diagnosis over a decade ago, and I still half-believe I'm a broken sub-human, because I was never like everyone else.  Being myself was wrong: it got me bullied, rejected, and alienated.  I know, cognitively, that this internalized idea is wrong.  I fight it every day, while I balance "not weirding out the normies" with being myself.  Most days, I think sanity is winning.  But on bad days, it's harder to believe that I'm not the twisted, fundamentally broken, less-than-a-human people constantly imply or even outright say I am.

Generally we don't talk about self-stigma that much.  Usually the norm for polite conversation goes with you everywhere, so when someone asks you how you're doing, you do not say, "Well, I'm a little underrested due to family drama and I forgot to take my pills today, so everything's kind of an anxious haze, what about you?"  You lie, and you say, "Oh, fine."  You don't talk about how mental illness affects you and so many others, and you certainly don't address how you have personally been affected by the destructive lies about mental illness.  Possibly, you don't even think about it.

The Internet has allowed people the safety of anonymity, though.  People who do think about it and are suffering will sometimes put cries for help on places like Reddit, in the National Autistic Society's forums, and on personal blogs and social media.  These cries are often answered by autistic communities and outspoken autism activists.  Even with such ready support, it's hard to unlearn this kind of stigma.  You can't simply find a safe space where people truly believe neurodiversity is a positive thing.  Your own skull contains the poison.

Surrounding yourself with knowledgeable fellow-sufferers-and-fighters can help, though.  Here's a link to an excellent list of resources to help.

With time, support, and effort, Self-Stigma can be fought.  With care, it can be countered before it becomes a poisonous, self-destructive force inside a person.  

Types of Stigma: Public Stigma

During my search for new and interesting autism-relevant research, I ran across an article talking about the types of stigma experienced by parents of autistic people.  It included two types of stigma I'd never heard of before.

I have a psychology degree, a decent amount of experience with stigma, and a general interest in such things, so I did some research... and I found there's a whole bunch of types of stigma.  I also hit upon a nice infographic, which I'll repost here.  I'll go through each of the types with autism-relevant examples from my experiences and reading.

Type 1: Public Stigma.  

This happens when the public endorses negative stereotypes and prejudices, resulting in discrimination against people with autism.  

The charming "Ransom Note" public campaign by New York University is a good example of this.

Text: We have your son.  We are destroying his ability for social interaction and driving him into a life of complete isolation.  It's up to you now. ~Asperger Syndrome

This is stigmatizing in a few ways.  First, social interaction and your ability thereof is a skill... i.e., something that can be learned.  So, no, there is no destruction here, it's simply that the child may need extra support to learn those social skills.

Second, do you know why autistic people tend to be more isolated?  It's not because we don't want friends, or don't try.  It's because neurotypical people tend to reject people different than them.  When that happens over and over, the person loses the desire to try again.  Saying that's their autism's fault is not only absurd, it's literally the opposite of the problem.

Third, this ad commits the idiocy of assuming you can remove the autism from the autistic.  You can ease the ways an autistic person suffers, like providing sensory support, treating depression and anxiety, allowing them to make decisions (and mistakes!) on their own terms.  And the results may be that they act less "weird," which is then mistaken for "less autistic."  The fact remains that you cannot cure or remove autism, which is a neurologically-based difference, from an autistic human.

This campaign, and others like it, have informed the public opinion of autism.  We are, apparently, a disease, threatening, and something to be feared.  This was the message given to the general public.

Here's another horrifying ad by Autism Speaks (stupid name; no autistic people are listened to there).  And here's the transcript, in case, like me, you can't follow the whole thing.

They've personified autism into some kind of malevolent disease-demon, infecting innocent children and making them have greater challenges than most kids.  Autism Speaks is happy to blame disintegrating marriages on this nonexistent entity rather than the actual children, while demonizing what makes those children unique.

Autism, to Autism Speaks (bullshit name), is nothing less than evil.  Which they, of course, have set themselves up as the "Good" to fight against.  There's a lovely message of universality, with mentions of various countries and religions.

It's a pity it all misses the truth, which is that there is no demon.  If autism has a representative, it's your children.  It's adults like me.  It's the collective community we adults have built.  We don't want your marriage to fail any more than we want our own relationships to fail.  We don't want you to go bankrupt paying for therapy that traumatizes and stigmatizes us.  We certainly don't want you to lose hope.

Mostly, what we want is to be ourselves.  To not be rejected for being different.  No amount of demonizing autism will make that happen.

Some excellent general examples of the typical public stigma experience can be found in the article here.  Highlights include, "autistic people don't have empathy/can't feel emotions," "autistic people are damaged," and how autistic children are all apparently soul-draining, life-destroying monsters (due to how some parents talk about them).

All of these are examples of Public Stigma, the first of seven types of stigma.  

Autism Panel for Med Students: a summary

About a month ago, I had the privilege of speaking to a group of medical students, most of them on track to become the doctors of tomorrow.  I was asked to make a speech to introduce the subject and lead into the panel discussion of autism and medicine.  Below is the speech, a link to the handout, and my answers to the questions the panel members were given.  I'll also include a summary of what other panel members said.

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Good evening, and thank you for coming.

Before we begin, a note.  We, the autistic people before you, represent a small portion of the autism spectrum.  We're the ones who are verbal enough and organized enough to sit before you in a strange place, prepared to talk about ourselves in coherent detail.  Not everyone you run into in your careers will be able to do this.

In fact, depending on how much stress we're under, WE OURSELVES may not always be able to do this.  So the first thing I want you to know is that there are many forms of communication, and what we'll do here is only the most mainstream form: verbal speech, supplemented by body language.

This form of communication is what most of society runs on, and our proficiency in it is why we were chosen to be here.  There are other kinds of valid communication, including behavior, sign language, texting, the Picture Exchange System, and text-to-speech apps.  I would strongly encourage you to acquire a passing familiarity with these forms of communication, at least enough to recognize them so you know what to Google.  (smile)  Quite frankly, I expect these forms of communication to become more mainstream as our understanding of autism and nonspeaking humans advances.

So, what is autism?  I've read a lot of books on the subject, and most of them start out with giving the DSM's definition.  That's the American Psychological Association's diagnostic manual.  And y'know, I could do that, but quite frankly, when I got my diagnosis about a decade ago, those criteria were useless.  So I'm going to skip them.  I have a bachelor's degree in psychology, and I'm going to tell you that diagnostic criteria for brain differences and mental disorders are far more theory than practicality.

You can rely on the diagnostic criteria for physical diseases like hives or measles because they're well understood.  You can't, or at least shouldn't rely on the criteria for neurological differences and disorders, because quite frankly the APA is grasping at straws.  They're trying their best, but apparently the human mind and the human brain are one of the most complicated subjects we as a species have ever tried to study.

Our current best understanding of autism relies on brain scans.  When put under an fMRI, there are functional differences between an autistic brain and a normally developing one.  Some parts of an autistic brain may be over- or under-developed by comparison to the "typical human brain."  The connections between those parts may be stronger or weaker than average.  You can get a wide variety of traits as a result of these differences in our mental machinery.  The most common ones are socially-oriented: things like difficulty reading body language, difficulty reading facial expressions, and difficulty reading tones of voice.

The difficulty goes both ways: sometimes you find flat or singsong tones of voice in autistic people, or a very flat facial expression that doesn't convey much emotion, or very rigid and uncommunicative posture.  You can also get things like gastro-intestinal disorders, diet sensitivities, sleep disorders, anxiety disorders, sensory sensitivities, executive function difficulties, and depression.

There are tradeoffs, though.  An autistic person who loves their hobby is one of the most devoted and knowledgeable people you could hope to talk to about that hobby.  As a spouse or a friend, an autistic person tends to be extremely loyal.  We tend to have strong senses of justice.  We also tend towards literal-mindedness, directness and honesty, rather than playing mind games and carefully selecting socially appropriate white lies.  Physical appearances, things like what brands you wear, how perfect your makeup is, and how coordinated your clothes are... these things mean less to us than WHO you are, and what things you like.

Finally, autistic people bring fundamentally different points of view to any discussion.  We are, in essence, different.  That can provoke misunderstandings and slow things down, but it can also be helpful.

For example, when my spouse and I finally gathered enough money to be able to house-hunt, we were told to pick some important things we wanted in a house, tell them to the realtor, and then look around until we found a house we loved.  My spouse may have been happy to do that, but I preferred to consider, in exhaustive detail, every aspect of the house I wanted to live in.

Things like 3 prong electrical outlets, the presence of a bathtub, number of bathrooms, number of shared walls, the tax rate, how the tap water tasted, the age of the roof, the amount of nature around the house, and the average time to Meijer, my parents' retirement home, and his workplace.  All of these things were excruciatingly given priorities and point values and put into a spreadsheet, which we filled out for every home we looked at.  Each home received a score at the end, which we used to help determine whether we wanted to put an offer on the home or not.

This was far more work and annoyance than most people would bother with, but I considered it worth the time so that we could find a home we would be happy in for decades.  Was all this work atypical?  Definitely.  Was it worthwhile?  Definitely, at least in my opinion.  My autism, weirdness and all, helped me find a place I genuinely enjoy living in, and my family is better off because of it.

Which brings me to my last point.  In recent years, autistic people have developed communities and schools of thought about ourselves, our difficulties, and our successes.  One of the major philosophies to come out of this coordination is neurodiversity.

Essentially, neurodiversity is the idea that the human race is better with neurological diversity.  That autism is not a disease to be cured, but a difference that should be supported and respected.  That isn't to say that autistic people don't need help, or that being autistic doesn't come with hardships.  It's merely to say that without us, you are all made less.  The human race needs people with different points of view, because it takes new and weird ideas to come up with the new and weird inventions that keep humanity moving forward.

Temple Grandin redesigned cattle facilities and slaughterhouses to be more efficient and humane.  John Elder Robison created astonishing new sounds and flaming guitars for the band KISS.  Bill Gates and Steve Jobs transformed the world as we know it with personal computers and iPhones.

Each autistic person is different.  Personally, I can't design a slaughterhouse or an iPhone, but I can stand here before you, the medical professionals of tomorrow, and attempt to bridge our worlds.  I firmly believe the world is better with all of us: neurotypical and neurodiverse together.

Thank you.

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Link to the handout

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Panel Questions

1.  What are you doing now or have you done recently that is a success for you - either because if or in spite of your ASD?

I went to Reston, VA, near the capitol in DC to help direct the Autism Research Program's use of US tax dollars.  They contract consumers (ie: people affected by the issue at hand) as well as scientific reviewers of various types.  Each application is reviewed through a set of processes, and eventually a final score is assigned.

From those scores, the most scientifically rigorous and most useful-to-the-community studies are chosen to be funded.  It was an exhausting opportunity, but a worthwhile one.

Most other panel members spoke about their jobs, or personal successes.

2.  Tell us about your support system.  If you want to, you can include your age of diagnosis.

My support system is complicated.

I try to eat dairy-free, because I've noted dairy products tend to send my mood into a downward spiral.  I don't know why this is, but it's a clear enough effect that I noticed.  I also have my supplements, which at this point is up to 8 pills in the morning, and 4 at night.  These include multivitamins as well as specific minerals and vitamins I tend to be deficient in.

In addition to these, I try to exercise 2-3 days a week.  I see a therapist once every two weeks, where she administers a form of neurofeedback called LENS as well as more traditional talk therapy and managing my supplements.

Other panel members spoke extensively about their families, mostly, some also about their friends.  They mentioned relying on these people to "get them," and advocate for them when they can't do so for themselves.

3.  What would you like people to know about autism?  What do you think are some common misconceptions?

Mostly, that we grow up.  The general perception of autism is that of a white male child of perhaps 6 years of age, obnoxiously trapped behind a warped pane of glass.  In fact, the average age of an autistic person is 19, and many of us are people of color, born female, and gender minorities.

Those of us that can blend into the general population often choose to do so, because of the stigma and infantilization of autistic people.  High support needs are equated with being a child or being stupid, and they shouldn't be.  But that can drive those of us who are verbal to feel isolated, and unwilling to identify publicly as autistic.

Other common misperceptions included the specific symptoms and presentation of autism.  Women in particular tend to not have the same kinds of symptoms as men, so sometimes an autistic person, or even a small child, is dismissed out of hand for not being like the "classical autism" which was described mainly around male children.

4. How do you respond in situations if you're scared or worried?  How might you respond in an ER or in a traffic accident?

This is rare for me after three decades of life, but if I have no script or sense for what I should be doing, I tend to freeze.  When sufficiently stressed or when my brain has become too "worded out", I can become nonverbal or very low-verbal.

Other panel members described being fully verbal but completely incapable of handling any decision-making.  One even said she would need to be talked down, preferably with subjects like her favorite TV show, before she'd be able to engage with an emergency situation.

Another spoke of having a completely abnormal response to a traffic accident, where the panic and stress reaction that neurotypical humans experience quite literally didn't kick in.  While the driver of her car was still locked into gripping the steering wheel, she got out of the car, inspected the damage, and found it was a very minor accident.

5.  If you are a person who experiences sensory overload, would you prefer a quiet room in healthcare?  How is the noise level/stimulation in current healthcare areas now?

I am definitely sound-sensitive.  I'm not sure there is anything that counts as a quiet room in healthcare.  I've been in hospitals, they make me fervently hope I never have to go back.  There's always people moving and talking in the hallways, the sounds of machines and medical equipment inside the rooms, the fan or climate control going...

These were nice hospitals, too.  Pleasant staff, lots of windows, art on the walls, all of that.  I can't imagine trying to heal and recover in such a place.  I'm no longer surprised when I go to visit someone in the hospital and they look terrible.  Nobody looks good in a hospital.  They're just not good places to be, to me.

There was no disagreement on this subject.  Not one of the four of us found hospitals a relaxing, pleasant environment.

6.  What can a neurotypical physician do to help communicate with a person with autism?

I mentioned this above, but it merits the repetition: learn about and be open to "nonstandard" forms of communication.  The Picture Exchange Communication System is one of these.  Sign language, text-to-speech apps, and texting itself are others, and there are more.

Other panel members noted that it's best to presume competence (ie: treat the autistic person like they're a person, and assume they know what they're talking about even if they can't express it perfectly).  They also appreciated a willingness to listen, and patience when a person has difficulty giving a succinct answer.

7.  What has a physician done for you that was helpful?  Unhelpful?

I've found self-directed care to be the most useful.  Giving me the information I need to make my own decisions, rather than simply writing a prescription and making the judgement call themselves, was empowering.  Believing me when I describe symptoms that don't fit neatly into a medical textbook also features high on the list.  I've had primary care practitioners that either didn't do this or didn't care because they had such a high caseload or just... didn't care overall.  

Histamines: Taking the Misery Out of Exercise

About a month ago, I experimented with flooding my system with histamines to see if it would trigger any ill effects.  I did this via food intake, custom-tailoring a day's meals to add external histamines to my system.  The results were not spectacular, but they did have promise.  I experienced worse than usual brain fog, lack of focus, a burning in my stomach lining, and some trouble breathing.

As it turns out, overloading my system with histamines wasn't actually the best experiment I could have tried, because the results were simply in degrees of discomfort.  A better experiment would have been to remove them entirely from my system and observe the results, particularly during hard exercise.  So I did that!

The Exercise Experiment

The one thing I didn't really try during this food overload experiment (quite possibly because I felt too poorly to consider it) was exercise.  I made a note to try the exercise later, but didn't really set up a good experiment for it until just recently.

As it turns out, as much as vitamin C is excellent for you and a good day-to-day solution, a good over-the-counter anti-histamine is more rigorous and quick to take effect.  Your basic allergy medicine, in fact, will handle this, though naturally you shouldn't be taking allergy medicine every day unless you actually have allergies and can't manage them without it.  So, knowing the effects were likely to be obvious, I took a single store-brand Benadryl, gave it 15 minutes, and then went biking as hard as I could.

I went for half an hour, and pushed myself hard.  Sustained cardio exercise at moderate-to-high intensity has reliably made me miserable in a hurry, so even though I was opting for an exercise that allowed for breaks, I figured I could just keep pedaling rather than taking my usual breaks for breathing.  The area I live in doesn't have all that much by way of hills, but it didn't matter, because...

The results were about as telling as I could have wished.  I got tired, and had to work very hard... but I did not get miserable.  Histamines, apparently, had been choking me out of my oxygen and proper brain function.  Effectively, I was having an allergy attack every time I exercised... until now.  It was extremely strange to be working my body so hard without becoming mentally exhausted and depressed.

The bane of my existence has always been exercise, and it's because, to the best of my knowledge, I run short of oxygen very fast and spend the rest of the time simply trying to survive the exercise with enough oxygen to not fall over or stop.  I had a summer cold a couple months ago and experienced the same symptoms (misery and low oxygen intake) from simply sitting, so it was easier for me to recognize the second time around.

The Histamines' Source

So if it wasn't what I was eating (I'd established in the last experiment that I mostly avoid all the foods that are high-histamine), why was my system overloaded with histamines?  

The answer appears to be (at least) twofold.

This is the pond out my back door.  All the snot-colored splotches in the water are algae.  They're some type of toxic species that happily grows in all the fertilizer runoff from the condos on my side of the pond and the apartments on the other side.  Normally they treat the pond for this mess, but after July was over, they kind of stopped, and this is the result.  I have a very high quality furnace filter cleaning the spores out of my house's air, but it's not like the house is airtight.  I may set up an air purifier in the bedroom as well, since I spend a third of my day in there.

The "this is definitely a problem" experience that makes me sure this is part of the problem happened when I went out to get pictures of this algae once.  I was out there for maybe two minutes, in the hot summer sun, last year... After I got back inside I had to lie down for like three hours because I felt so bad.  It was like my brain function had been repressed, almost like being extremely drunk, except without the visual impairments, coordination impairments, and nausea.  I had enough presence of mind to take my N-Acetyl-Cysteine, which helps detoxify my system, and drink a ton of water to help flush things out, and then I simply lay down, closed my eyes, and waited it out.

I woke feeling a little better, but not really back to normal, and with a much healthier respect for the toxic sludge that lives outside my back door...  Even opening the back door for a couple seconds has deleterious effects on my brain, though thankfully not the "go lie down for three hours" effects.  More like "you're going to feel kind of bad for 15 minutes."

So, I'm pretty sure the algae is factor one.  Factor two?  House dust mites.

My mother is allergic to these, which is fortunate because otherwise I probably wouldn't have attached any importance to the fact that my nose starts plugging up when I lie on bedding that hasn't been washed in a week.  She actually has it much worse, in that she actually can't sleep if the mites are bad.  Her nose just keeps running and stuffing.

I mentioned this to my doctor, and she recommended washing my bedding in hot water.  The problem is that hot water shrinks things, and I don't really like fighting my spouse for blanket.  Fortunately, my mother has a solution:

More the former than the latter, but if the former doesn't entirely fix the problem, the latter might.  Or might just help with the algae also.  I've ordered a bottle of the deMite, and will try it next laundry day.

A Healthier Life?

I'm really hoping those are the only two factors, and that good care with both of these factors will sort the problem out.  If it does, I'll be able to exercise more regularly, and at higher intensities than I've ever been able to before.  I've been reluctant to exercise... well, at all, really.  But especially at moderate to high intensities, because... misery.  If you're miserable every moment you're doing something, you tend not to repeat that activity.

I still have the years of misery associated with exercise, of course... but I'm not going to let that stop me.  Movement is immensely important to mental, physical, and emotional health.  If I can incorporate it in my life without the historically destructive, all-consuming misery, that would be a massive improvement... and it might make all the difference.  I might actually come to like exercise.  (Given my past history, this last sentence would normally equate to "pigs might fly."  The future might be different, though!)

In the meantime, I need to manage my daily histamine levels.  This often means careful diet management, but in my case, I basically don't eat anything that's high in histamines anyway.  I need merely cut a couple foods that I wasn't extremely fond of anyway.  My doctor has recommended an herbal supplement that should help with the day-to-day management of this histamine overload.

Notably high in vitamin C, of course, but the various herbs listed there also help with histamine management.

In the meantime, further experiments with vitamin C are in order!  I've had promising results with drinking a dose of my vitamin C powder about 30 minutes prior to biking.  But biking is just the easiest option.  If I can, I'd like to experiment with my archnemsis of exercise: jogging.  I have a long history with failing miserably at jogging, and it'd be a real turning point if I could succeed at it and get really good, intensive exercise at the same time.  I'm very hopeful!