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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.

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.  

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.)

Valuable Online Resource: Fair Health Consumer

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

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

The Problem

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

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

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

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

The Immediate Solution

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

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

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

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

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

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

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

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

In the Long Term

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

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

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

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

Reading the Research: Autistic Sociability in a Pandemic

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

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

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

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

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

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

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

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

Book Review: Start Here

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

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

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

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

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

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

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

Read This Book If

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