Monday, May 24, 2021

See you on Wordpress

 I have officially moved!  Please find all future posts, research, and important topics at www.realisticautistic.com.  My entire archive of work has been migrated there as well.  See you there!

Friday, May 21, 2021

Book Review: Parallel Play

(Hey folks, I've moved!  Please find the new site at Wordpress!  This will be one of the last posts on Blogger- I hope you like the new site as much as I do!)

Parallel Play: Growing Up With Undiagnosed Asperger's, by Tim Page, is a "my life with autism" story from one of our older survivors.  The book mainly deals with his childhood, as the title suggests, and is written in the typical autistic conversational-explanational tone that so frequently graces our literature.  Mr. Page's prose is more polished than most, I would say, which is likely due to his many years of wordsmithing.  

I call this autistic generation The Lost Generation, personally, because few of these autistic people avoided institutionalization, and those that did typically suffered immensely.  Autism was simply not understood, let alone supported.  There was no community to which we could find advice from others like us.  No comradery and fellowship.  No support services designed to meet our needs.  

Those of us that survived without being sent to the destructive prison-institutions typically bear scars and unhealthy adaptations from the experience.  Depression and anxiety are common.  For this author?  One of those unhealthy adaptations is a fixation on death.  This isn't uncommon for autistic people- anything can turn into a hobby or fascination.  Morbid subjects aren't unreasonable, especially when a close family member (such as the author's grandfather) dies when the autistic person is young.  

In the author's case, there are no gory details to be had.  His interest in the subject included a much-heightened fear of death and interests in deceased authors, musicians, and silent films.  I suspect this book would be quite a nostalgia trip for an older person, especially one that grew up in the Northeast US at around the same time.  In that sense, I am very much not the target audience.

One thing is painfully consistent regardless of generation, though.  The pain of living in a world that constantly misunderstands and willfully rejects you is clear throughout this book.  You can see this same pain in Liane Holliday Wiley's writing.  Both Tim Page and Liane suffered immensely, and neither of them had any kind of fellow autistic community.  They were simply alone, and found their way as best they could with other misfits.  

Another painful echo found in this book as well as other autistic accounts was perhaps summarized best by Jennifer Cook O'Toole: "How can I be so smart, yet so stupid?"  Tim Page mentions scoring well on IQ tests (though no specific numbers) a couple times in the book, and inevitably with those mentions also comes a certain disbelief, and the suggestion that his father might have tampered with the results.  I certainly have no special insight into that suggestion, but I suspect Mr. Page, like many people, operates on the idea that IQ is somehow a blanket score for intelligence.  

I strongly suspect I will go blue in the face before I ever finish convincing people that no, it is not.  IQ is a measure of how well a person is likely to learn in a typical school setting, using typical teaching methods.  It does not account for learning disabilities.  It does not cover common sense, emotional intelligence, musical ability, hand-eye coordination, and social skills.  It's a highly restrictive scale that should only be considered useful in highly restrictive settings.  But because of the value people place on it, a person with a high IQ score is assumed to be good at all these other things.  When they turn out not to be, disappointment is about the kindest response I've seen.  Rejection, disbelief, and avoidance are significantly more common.

This aloneness and rejection tends to breed a mindset of "I don't fit in and it's my fault.  If only I wasn't so ____, I would have friends and be happy."  This sense of being wrong and bad is pervasive.  I should know: a part of me still believes that even though it's definitely unhealthy, bad, and just flat-out wrong.  It's the same poisonous mindset as believing that I can't be beautiful because larger women can't be beautiful (except for every other larger woman, because obviously the beauty industry is manipulative and horrible).  

It's exactly these kinds of experiences that make it worthwhile for me to step forward and identify myself as autistic.  Simply knowing "there's someone else like me" is a massive relief and boost to quality of life.  It's why representation in the media, especially genuine representation, is so important.  Parents do better knowing autistic adults, because it gives them a picture of what their kids might grow to be.  Autistic kids can receive that same benefit, but they also can gain courage to be themselves.  Also strategies and insights they might never have had themselves.

In short, they can have the things I never had, and hopefully be healthier and happier humans for it.  We march to our own drums, we autistic people.  Each of us stunningly unique.  One day I hope that uniqueness won't contain a rainbow of trauma as a given.  

Read This Book If

You want to experience a vivid slice of life narrative from an autistic man who grew up in the 50s and 60s.  They were a remarkably different time, those days before the Internet came to everyone's phones, computers, and homes.  This era wasn't my era, but I think there's value in knowing what life was like before the modern one... and in knowing the stories of the Lost Generation, perhaps find something of ourselves.

Friday, May 7, 2021

Book Review: Asperger's Syndrome: Helping Siblings

(Hey folks, I've moved!  Please find the new site at Wordpress!  This will be one of the last posts on Blogger- I hope you like the new site as much as I do!)

The Visual Guide to Asperger's Syndrome: Helping Siblings, by Alis Rowe, is a plainspoken children's book-sized publication focused on helping parents help siblings of autistic people adjust and thrive.  I found this book in the autism section, not the children's section, but it's pretty clear from the font size and pictures where it's meant to go.  At less than 100 pages in large sized font, it's not a long read. 

I picked it up anyway because this is a vastly under-served and under-recognized need.  There are hundreds, if not thousands of books geared towards educating parents and professionals.  Even books specifically focused on other autistics, often written by the same.  But very little has been done to help siblings of those on the spectrum cope with, say, the resentment of regularly being overlooked in favor of handling the autistic child's special needs.  

Sometimes, in the stress of everything that has to be done to manage the finances, support services, and even themselves, parents miss things.  These things can include their own self-care and wellness, and it can also include making time for doing things with just the sibling(s).  This is entirely understandable- after all, every autistic child is different, so there is no one "do this and everything will be fine" guide.  Children are already challenging, even without factoring in unusual developmental patterns and the need for support services, specialized learning, etc.  

Though all this happens unintentionally, it can be really hard on the neurotypical sibling(s).  Anger, embarrassment, jealousy, and frustration are common.  If autism isn't well-explained to the child, confusion and misunderstandings about why the autistic child is treated differently may result.  

This book tackles the job of pointing out common pitfalls as well as providing answers and suggestions as to how to address each problem.  It lists and addresses specific concerns and feelings a sibling might have, which I thought was useful as well as enlightening.  

One thing I particularly appreciated was that the book spends time explaining the difference between a tantrum and a meltdown, which is an exceptionally important concept for family to understand.  For the unfamiliar: tantrums are goal-oriented.  The person throwing the tantrum wants the attention, or wants something (like candy, ice cream, a toy, etc), and when that want is met, the tantrum ends. 

Meltdowns, on the other hand, are a response to overstimulated senses (like loud environments) or other adverse circumstances, and only end when the person has calmed down.  The two behaviors look superficially the same, especially to someone unfamiliar with the person, but should be treated very differently.  


Read This Book If

You're a parent of an autistic child with at least one other, neurotypical child.  This is a tightly focused, easy-to-read book meant to guide parents in helping both their autistic child and their neurotypical child(ren).  It lays out important basics as well as very specific concerns and feelings a sibling might have.  At less than 100 pages and in large, easy-read font, this is a good starting place for a parent to begin with this important, often sidelined, subject.  

Monday, May 3, 2021

Reading the Research: The Real Link Between Violence and Mental Illness

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

Today's article merited underlining simply because this link is still, after all this time, misunderstood over and over.  I'm tired of seeing it, so here's the truth.  There is, in fact, a link between mental illness and violence.  But it's not what people think.  

People with mental illness (which often includes autistic people) are far more likely to be the targets of violence.  We are not the perpetrators.  The perpetrators typically people without diagnosed disorders.  To quote the article: "The large majority of the perpetrators of violent crimes do not have a diagnosable mental illness, and conversely, most people with psychiatric disorders are never violent," Dr. Swanson writes.

Popular culture and the news seem to desperately want to play pin-the-tail-on-the-donkey with mental illness when some new violent horror pops up.  Because people always want to know "how could this happen," but never want to consider that it might be because we've been strangling social services for decades, or because the US has so many more guns per person than other Western nations.  They seem to want a nice, safe "it was something specifically wrong with this one person" answer so nothing has to change and we can all move on with our lives.  

As any idiot could tell by paying attention, these quick, individualized theories have had no useful effect in ending violence in schools, churches, and against marginalized people.  If it's not the police shooting a black woman in her bed (or any number of other murders), it's attacks against US citizens of Asian descent, or the painfully numerous school shootings (including three in 2021).  

The suggestion that mental illness might have been involved with violent perpetrators' motives for their horrific actions is nothing more than victim-blaming misdirection.  It's much like how some awful humans seem to think that wearing certain clothes is "inviting sexual assault," as if adult male humans are toddlers with no self control who can't possibly be expected to answer for their actions.  

So the next time you see a news article on the latest school shooting or hate crime, and the author suggests mental illness might have been involved, please recognize it as the gaslighting, red herring bullshit that it is.  

People with mental illnesses are the victims of violence, not its perpetrators.  Blaming the victims solves nothing and helps no one.  

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

Friday, April 30, 2021

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!

Monday, April 26, 2021

Reading the Research: Autistic Sociability in a Pandemic

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

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

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

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

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

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

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

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

Friday, April 23, 2021

Book Review: Start Here

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

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

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

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

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

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

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

Read This Book If

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

Monday, April 19, 2021

Reading the Research: Supportiveness

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

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

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

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

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

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

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

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

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

Friday, April 16, 2021

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.  

Monday, April 12, 2021

Reading the Research: Catastrophizing

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

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

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

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

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

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

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

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

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

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

Friday, April 9, 2021

Book Review: The Game of My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read This Book If

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

Monday, April 5, 2021

Reading the Research: Misjudging Stereotypical Autistic Behaviors

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

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

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

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

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

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

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

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

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

Friday, April 2, 2021

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.  

Monday, March 29, 2021

Reading the Research: Companion Cats

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

Today's article is one of various articles I've seen about companion animals and autistic people.  

The research is pretty simple here.  Owning a compatible pet can be a very positive experience for autistic people.  Many studies focused on dogs, since dogs display their affection more.  As a bonus, they need to be walked, which can mean built-in exercise for the family or individual.  

There's something to be said for cats, though, and that's that if you get the right one, they're comparatively low-maintenance while still being affectionate and supportive.  They're typically quieter than dogs, which is a bonus for humans with sensory sensitivities.  

In both cases (or other, less common pets, like rats, snakes, birds, gerbils, hamsters, etc), the fact that the animal doesn't judge by human criteria is incredibly valuable.  Their needs are simpler, and they're often more forgiving than human peers.  A good pet can be a support and a joy to any household, not merely ones with autistic people.  

I'd tend to say furred and affectionate animals might be a better match for most autistic people, given that petting the animal can be a pleasing sensory experience.  Particularly with a purring cat, indicating the petting is making both you and the cat happy.  

As with any support for autistic people, careful consideration of the specific person and their needs is required.  Immediately rushing out to buy the cutest cat or dog you can find is not kind to the autistic person or the animal.  Keeping noise considerations, specific human and animal temperaments, required responsibility, and other relevant factors in mind is important in these decisions.

It's also relevant to consider whether adopting a grown cat or dog might be worthwhile.  A pet bought while it's still a puppy or kitten may not have sufficient socialization to be a proper support animal.  Older pets, on the other hand, have settled personalities.  They also have a harder time being adopted, so you can be a good person and change a pet's life for the better, while also being a good person and change your loved one's life for the better.  

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

Friday, March 26, 2021

Book Review: Divergent Mind

Divergent Mind: Thriving in a World That Wasn't Designed For You, by Jenara Nerenberg, is less of the practical guidebook I expected from the title, and more a work of history, philosophy, and suggestions and guidelines for changing the broadly disabling systems we live and work in.  Please also note that "neurodivergent" includes autism, but it also includes synesthesia, sensory processing disorder, ADHD, and more.  

The book begins with a section which read to me like a defense of the book's existence, which... kind of made me sad, because I've only seen such things rarely, and usually by autistic adults needing to prove their viewpoint matters. The author says that this book was written in response to and in addition to Elaine Aron's "The Highly Sensitive Person," published in 1996.  I suspect that book might also make for good reading.

Once the defense of the book's existence was done, it got into the deconstruction of the words and concepts we use to pathologize people, such as "mentally ill."  The author presents the historical context and evolution of cultural thinking about neurological differences in the recent few centuries.  "Female hysteria" is one of the earlier terms discussed, obviously having its roots in the male-dominated thought processes of the day.  

The book also briefly covers more recent developments, like the rise and overdiagnosis of ADHD.  Generally, the point was that what we consider normal or abnormal changes depending on what's going on in the world and who has power.  There's also discussion of various diagnoses and how they are part of a larger phenomenon that's mainly been sidelined up 'til now.  

Finally, the third section talks about changes that can be made in the self, in the home, and in the workplace.  Again, this book doesn't really specialize in concrete ideas.  I'm not at my best in terms of retaining information right now, but mainly what the author seemed to recommend was, "listen to what you feel you would do well with, try things and keep the ones that work."  That included things like paying attention to the paint colors.  

Something that specifically stuck out to me was the suggestion of figuring out what colors appeal to you and making a point to have them around.  Which just reminded me that I tend to buy everything in blue or neutral tones.  I am currently wrapped in a pale blue blanket while typing this at my computer.  Next to me is a bright medium blue cloth organizer box.  My hair is currently two-toned sapphire and Carribean ocean blue.  My computer background is a blue-hued galaxy.  My water pitcher with built in filter is a dusky dark blue.  My pill organizer is blue.  A lot of my clothes are blue. 

Apparently I've been subconsciously shaping my environment towards easing the burden on my senses for years.  Fortunately, my spouse doesn't mind my very strongly held preferences.  

I mostly liked this book, but I worry it doesn't have a lot to offer people without a lot of control over their lives.  Many autistic people live in poverty so they can get the support services they need.  That situation may not give the person (or their parents) the influence they need to change the paint color on the walls, let alone choose a career that doesn't strain their senses to the breaking point every day.  

I can't argue with the usefulness of at least teaching people to recognize the differences in their senses and experiences, and finding what ways they can to improve their lives.  Adding in a safe room, with colors to relax the person's senses, perhaps textures or smells that do the same, etc, would do pretty much any autistic person good.  

More concrete examples of changes people made in their lives, and how that helped them, would have helped make this book more accessible and useful to a broader audience, in my opinion.  As it stands, this is more of a philosophic piece about changing your mindset away from the disabling and limiting crap we've been fed systemically.  While that's valuable, it's not immediately... actionable, I guess.  

Changing someone's overall mentality is valuable and important, but they have to have the time and energy to devote to it, and my fear is that many autistic people and their parents don't have those resources to spare in these unusually and overly interesting times.  

Read This Book If

You're autistic, especially if you're female, and you want a new perspective on neurodiversity and sensitivity.  I expect parents of autistic people could also benefit from the ideas in this book.  They include history, philosophy, and broad suggestions for improving the experience of home, work, and existing in general.  The suggestions aren't concrete, firm, easy-to-follow ones, but nothing valuable in autism is cookie-cutter anyway.  This book is perhaps aimed at people with influence and means, rather than the average autistic person.  Still, the ideas within can be valuable to anyone.  

Monday, March 22, 2021

Reading the Research: Hiring Limitations

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

Today's article touches on a sore spot for many unemployed and underemployed autistic people (hi!).

The fact is, the hiring process in most companies is extremely discriminatory.  Not in some cartoonish way, with an evil HR person twirling his mustache and leeringly stating, "we don't hire black people/women/neurodiverse people here."  And yet, it might as well happen like that, because that's more or less the results, repeated over and over across thousands of companies worldwide.  

As far as I've seen and heard, there isn't really a standard set of practices for hiring.  As a result, hiring managers are pretty much given criteria for what skills the job requires, which lets them sort resumes...  but after that, and sometimes even during that, is when things go wrong.  

Hiring managers tend to hire people they personally like.  Their gut tells them this person or that would do a good job, and so they hire that person.  The problem is the criteria used.  Humans tend to shorthand "this person is like me" to "this person is competent and will fit well into the company."  Which puts neurodiverse people out in the cold unless the company is already mainly neurodiverse.  So effectively the hiring process is gatekeeping, and on a massive scale.  

It's during the interview process that many autistic people fall flat on our faces.  It's not that we lack the skills necessary.  It's that the interview process is an elaborate dance of lies and wordplay.  Is anyone really enthusiastic about a job in retail?  Especially after applying for 20 more positions elsewhere, managing multiple interviews, and being turned down repeatedly.  And yet "enthusiasm and positivity" are major hiring criteria for most retail chains, if not most workplaces.  

Autistic people often aren't great at lying.  So we're more likely to give honest answers, which get us disqualified.  Sometimes even before the interview, since there's an increasing movement to use online psychiatric measures with opaque criteria.

The typical path for autistic people to even be considered is for our work to speak for us.  Portfolios and work samples are key.  Or knowing someone in the company, someone who can vouch for your skill and usefulness, and someone who can help mediate issues as they arise, is another path. Not all jobs have a portfolio option, though, and connections to others even more limited in autistic people than they are in neurotypical people.

So it's kind of a mess, and a major reason why neurodiverse and autistic people aren't well represented in the workforce.  

This article offers a solution to the problem, in the form of changing the hiring criteria, and changing workplaces so they actively invite and support neurodiverse people.  I agree with the suggestion that doing so would lead to businesses being more successful and competitive.  

As the Hollywood movie industry has shown us in recent years, you can only get so many interesting stories out of older white male Americans. If you want new ideas, you need to look new places.  Women, people of color, neurodiverse humans of all stripes, our ideas will differ.  To continue improving and growing businesses, those different ideas are necessary.   

For all of our sakes, I hope people listen.

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

Friday, March 19, 2021

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.  

Monday, March 15, 2021

Reading the Research: Brain Differences

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

Today's article is one in a lot of very long overdue research on autistic women.  The scientific term is "sex differences" which might weird out a more general audience.  In biology, "sex" can refer to the physical organs and characteristics.  In psychology and sociology, this differs from "gender" which is the person's experience of their masculinity, femininity, both-ness, or neither-ness.  

In this research, the focus is just specifically on the physical, which makes me wonder if they've accidentally thrown monkey wrenches into their work.  The transgender and autistic communities overlap quite a bit (hi, that includes me!).  Since transgender people also tend to have different brain scan readouts than cisgender folks, I'd kind of assume this would complicate any potential findings...

At any rate, potential flaws in the researchers' methods aside, they did find differences between male and female autistic brains. This is maybe not surprising if you've met a decent number of male and female autistics.  The latter tend to learn more camouflaging behaviors and to be quieter due to societal expectations, while the former aren't expected to manage such nuances and can thusly be far more visible.

If I'm reading this summary I linked, and the main research paper correctly, the data shows autistic brains are more similar to each other, regardless of maleness or femaleness, than they are to neurotypical brains.  There were differences based in maleness or femaleness, such as how well the visual parts of the brain communicated (wonder what that corresponds to in actual life? Poorer imagination skills?).  

Mostly, I'm just glad to see research prioritizing figuring out what differences there are between male and female autistics.  In the very recent past, the focus has pretty much exclusively been on male autistics, to the point that the autism criteria was written around them.  Thusly, to "qualify" as autistic medically, you were judged on "how male you are" to quote a fellow autistic from the show Love on the Spectrum.  

This isn't the first research to examine female autistics, but it might be important in establishing a more generally applicable autism diagnosis.  And it's definitely relevant to recognize that distinctive challenges and differences exist between the sexes.  

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