I spent my elementary-school years soaking up the very best in English literature.
For a preteen horse-mad bookworm that meant: Enid Blyton, Hilda Boden, Josephine Pullein-Thompson, her sister Christine Pullein-Thompson, and Many More. I didn’t notice at the time, but now it’s obvious: all my early writing models were women. My very first book purchase was a pony book by Hilda Boden, who took up writing stories to help support her family. I kept that book–Joanna’s Special Pony–for years, and reread it many times, imagining the windswept Scottish coast populated with wild (but tameable) ponies and admiring the resourceful, determined heroine of the tale.
I’d nearly forgotten Lilian Buchanan’s illustrations–until I saw them again, and recognized them.
From that day onward, every smidge of my allowance (well, sparing a few pennies for sweets) went for the next installment of the Famous Five or Malory Towers or any number of pony books.
All of those books stayed behind in Yorkshire when my mother had to pack us all up for the move to the States. My British childhood was over, and military moving allowances are based on weight, so . . . my pony books, boarding-school novels, and mysteries went to the thrift store for some other child to collect.
“I thought you were done with baby dolls, you still have the Barbies,” my mother argued.
“Not all of them,” I countered. “I promised that one, the littlest one, that I wouldn’t ever ever give her away.”
But it was too late.
I think maybe I broke my mom’s heart a little bit. Well, a little bit more. Motherhood involves a lot of heartache. Well, Baby Doll may have been lost to me forever, but I’m sure she had at least one more little girl make her similar promises.
The only good thing about the move was that all my friends had to study up for the Eleven-Plus, which would determine whether they’d go to a nice boarding/academic secondary school (like Malory Towers), get stuck in a dead-end “modern school” with no college track, or take up a trade and actually be able to earn a living. Me, I got to spend a couple of weeks coasting through the end of what Americans called “fifth grade” sitting in a classroom with children who–it seemed to me–hardly read at all, before being unleashed to a long, long American summer vacation. Luckily, my grandparents’ house was packed with books–mostly Reader’s Digest collections, but also a classic edition of One Thousand and One Nights and my dad’s stash of science fiction magazines.
Over the years, those old-style children’s books have been supplanted in the market by more literary-style books for children, others with science-fiction or fantasy roots, and thankfully many with more diverse casts of characters. A few have received a dusting-off over the years . . . there’s even a 2020 BBC-TV adaptation of Malory Towersthat puts the storyline in a historical-fiction context while also envisioning a more diverse enrollment and faculty at the school.
Now, it’s my turn to have a house packed with books, and it’s an eclectic collection–not even taking into account all the books that aren’t technically mine, but my husband’s. No matter–I put them on the shelf and dust them (occasionally), so they’re mine in that sense. I’ve launched a little Instagram project to share a few of those books, on a regular basis–mostly the out-of-print ones, the ones I inherited from my Dad (a fellow SF fan), and ones that may be old but that still speak to current issues. The hard part is figuring out how to photograph them–top bookish instagrammers have such lovely still-life setups for their book posts. I’ll do my best to at least not to give people eyestrain.
None of that means I’ve stopped gathering-in books. Just in time for my birthday, my very first Quarantine Birthday, I retrieved a book long-lost in the move from England, my first book purchase, my favorite book from that day until the day it vanished to the thrift store with my dolls.
The dolls are gone, my mother long forgiven, but the books never have left my mind. Just this month, I made a birthday present for myself of a copy of Joanna’s Special Pony, dusted off from some other collector’s shelf–one in better condition than the one I left behind, PLUS a copy of the sequel. That was a book I never got my hands on, because it was only in hardcover and my allowance was two shillings sixpence, exactly the price of a paperback (my, what a coincidence–almost as if my parents wanted me to buy books).
If you like Instagram, the series is here. I’ll try to remember to link to those postings from the Facebook page as well.
This isn’t so much a blog post as a paper. There are footnotes and citations. Bear with me.
Have you had this experience? Someone in a group discussion notes that April is Autism Awareness Month. Then someone else says, âOh, remember Rain Man? I watched it again recently! Isnât that a great movie?â And then everyone has a lovely chat about movies. Unfortunately, this kind of response is what gamers call an Epic Fail. Letâs walk into April with some better awareness.[1]
So, what is autism? What isn’t it?
Photo Credit: Nina from Australia, Rain, Rain, Go Away (CC BY 2.0) via Wikimedia Commons
What it is
Autism is a set of neurological characteristics found in as many as 1 in 50 people [2,3] that can lead to difficulties with social interactions, repetitive behaviors, or intense engagement in special interests. Not necessarily all these things. (So, you know 100 people? Well, you likely know a couple of autistic people.)
Nobody knows what âcausesâ [4] autism, although probably there are combinations of genes that are more likely to yield autistic characteristics. (It may run in families, like other polygenic characteristics, such as height.) Autism presents on a spectrum, so its current designation is Autism Spectrum Disorder (ASD)âŚthough many autistic people will counter, âthereâs nothing disordered about me!â
What it isnât
Autism has absolutely nothing to do with vaccinesâthat absurd idea was generated by publication of fraudulent research, a real-world hoax that has harmed untold numbers of people [5,6,7]
Autism is not Rain Man. Dustin Hoffman did his best, and the film made a positive difference at the time, but that was over thirty years ago. The movie is now woefully out of date, and most autistic people find it discomfiting, stereotyping autism, families of autistics, and the way the world perceives them.
Autism is not sociopathy/psychopathy/other-mispercepathy. The number of mysteries or thrillers or police procedurals in which the murderer/terrorist/stalker is a shifty-eyed, unempathetic, twitchy weirdo whose speech patterns and movements and sometimes specific labelling code them as âautisticâ make my hair curl. No, the autistic people of the world are not spying on you, plotting the perfect murder, or designing weapons of terror. Instead, as a class, they are the kindest people you know.
Autism is not the strange child. The vast majority of autistics are adults. Autism doesnât go away when you grow up. Why donât you notice? Those whose difficulties with the world are great still live in relative isolation. As for the rest, theyâre âmasking.â This isnât a lighthearted improv exercise. It is a progressive modification of behaviorâoften unconscious, in ways learned over many yearsâto appear more like you, because theyâre pretty sure you wonât accept them otherwise. (So, maybe this should be Autism Acceptance Month.)
Masking isnât perfect; you probably think of your autistic friends as âthe little-bit odd oneâ or the âcute, quirky one.â You may not see them around as much as your other friendsâbecause keeping up masking is hard work. The older an autistic person is, the better they can be at maskingâbut then, itâs harder for them to change that. Also, be aware that if you realize a friend is autistic, it doesnât help to tell them to stop masking. Itâs a difficult process, and theyâll let you know when theyâre ready.
Photo Credit: Dietmar Rabbich (CC BY 4.0) via Wikimedia Commons
Unfortunately, old movies like Rain Man leave the impression that all autistic people are weird geniuses, canât take care of themselves, and suffer extreme difficulties with life. Yes, some are in that boat (and a rare few are even geniuses). Itâs important to be sure everyoneâs properly supported in lifeâcan we simply agree to support autistic people with needs just as we support neurotypical (NT) people with serious life issues?
A few thoughts to keep in mind, no matter what type of neurons youâre thinking with:
Autistic people are, as a group, extremely honest. This presents complicationsâbecause most autistic people donât react in conversation in quite the exact way that neurotypicals expect. For instance, if someone doesnât look you in the eye all the timeâa favorite behavior of NTâsâtheyâre perceived as âdishonestâ. Thatâs unfortunateâŚwhich is why ambitious autistic adults work hard to make eye contact, even though it may be enormously stressful to do so.
Autistic people are empatheticâand have all the same emotions you do. They may express their emotions a little differently, but that doesnât mean they donât have the exact same feelings you experience. Your autistic friends may even be more likely to notice how youâre feeling and to empathize with you, because they are observing you and working to figure you out, all the time. So theyâre not just in possession of that deep, humanizing characteristic, theyâre actively working at it, every day.
This doesn’t mean that autistic people are all perfect, wonderful, nice, diligent, hardworking, or what-have-you and are somehow better than neurotypical people. Everyone has shortcomingsâand autistics don’t need to become the next perfectionist minority. It’s just that the stereotypes (weird, twitchy, untrustworthy) are contradictory.
If youâre reading this, youâre probably part of the reading/writing community.Here’s another thought for you.
Well. Ummmm. YOU might be autistic. Nobody wants to think of themselves as âdifferent,â but writersâwhether theyâve gone the publishing route or notâdraw heavily from a well of âdifference.â Lots of us grew up feeling like we were âon the fringeâ or âthe odd one out.â We dive deep into the special interests that drive our work. We can go on and on and on about a character or a situation or a plot pointâwhether in a story we wrote or in one of our favorites. Heck, some of us can sit down and hammer out 50,000, 100,000, a million words. Thatâs hardly what nonwriters would call âtypical.â
If youâve secretly, quietly wondered if thereâs something you donât know about yourself that maybe you should, here is one easily-accessible book to read: Cynthia Kimâs Nerdy, Shy, and Socially Inappropriateis a clever, affecting story of one woman’s journey of self-discovery. Some terminology it uses, unfortunately, became outdated the year after publication, with the elimination (for very good reasons) of the problematic term Aspergerâs [8,9], but the self-realization content still holds up.
A cautionary note: take with gigantic doses of salt anything coming from the group Autism Speaks. They will be rather shouty during April and their old puzzle-piece logo will be cropping up all over, but this group is widely derided by autistic people as not speaking for them and, worse, actively spreading misperceptions about autism [10] and promoting [11] the application of abusive âtherapyâ [12]. Many autistic people therefore consider Autism Speaks to be a hate group [13], but even without that label, their role in the politics of disability is subject to serious question [14].
Ready to raise awareness a little (or a lot) more?
Below are a couple of helpful, easy-to-access resources. You can find deeper reading by continuing to the Notes and Citations section.
Ask Autistic Adults is my current favorite website for quickly-accessed on-point information on what grown-up autistic people feel you should know: labels, appropriate language, effective support, fake/abusive âtherapies,â and more.
The Thinking Personâs Guide to Autismis a web-based organization that provides a broad array of resources and connections to useful information for autistic people and their allies.
To catch up on the current zeitgeist in the autistic community, try the hashtag #actuallyautistic. To some extent, outsiders have tried to co-opt it, but the hashtag has withstood that pretty well so far.
Now, have a very happy Autism Awareness Month, everybody!
Below the blue umbrella: Notes and Citations
Photo Credit: Tom Mrazek, An Umbrella In the Dark, (CC BY 2.0) via Wikimedia Commons
Yes, lots of notes and cites. Because a blog post needs to be brief, but the topic is complex!
No one person speaks for all people in any marginalized group. I make no claims that my perspective, or those of the autistic individuals Iâve cited here, is more worthy than that of any other member of the broadly-defined autism community. This essay cannot be perfect, but I will update it as necessary, and I welcome honest, fact-based critique.
âRising ratesâ of autism do not reflect changes in the incidence of autism; rather, reports like the Johns Hopkins article reflect how wider application of diagnosis reveals that more people are autistic than was thought previously. This article in particular highlights a progression over time, as researchers began attending to this data and improving their diagnostic techniques. I linked to this article because it is quite readable and provides links to the academic papers and data, for those who are interested. The choice of a headline in a public-facing news presentation can be misleadingâremember to read more than headlines.
Autistic people, by and large, dislike using âcauseâ to describe the mechanisms underlying autism. It makes it sound like a disease, something you can âcure,â and that detracts from attending to what can truly help autistic people thrive in a largely non-autistic society, understanding what âtherapiesâ are harmful bunk, and listening to what autistics think. However, itâs the term thatâs easiest for a casual reader follow in the context of a (supposedly) brief article like this one. As a reminder, this is a note to a sentence stating clearly that the mechanics are still unknown.
âWakefieldâs article linking MMR vaccine and autism was fraudulentâ British Medical Journal (BMJ). 6 January 2011. BMJ 2011;342:c7452. https://www.bmj.com/content/342/bmj.c7452
Wakefieldâs horrific piece of hoaxery was published in the Lancet in January of 1998, and its awful effects have flowed into every corner of our medical landscapeâeven influencing vaccine resistance during the current pandemic. By the time the journal retracted the piece, the damage was done and the evil thought-virus of ‘vaccines are scary’ had spread too far to eradicate it.
Eggerston, Laura. âLancet retracts 12-year-old article linking autism to MMR vaccinesâ Canadian Medical Association Journal (CMAJ). 9 March 2010. Accessed via National Institutes of Health, 29 March 2022. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831678/
Hans Asperger, the man after whom the so-called âhigh-functioningâ side of the autism spectrum was (temporarily) named, is now known to have been a eugenicist, Nazi-assisting child-hurter, and all-around guy-you-wouldnât-invite-round-to-dinner. The article below [9] is an accessible read and includes references.
Long, long ago, when I was a horse-mad thirteen-year-old, we lived stranded in a one-street suburb of Montgomery, Alabama, where the only available equine companionship came in the form of a mare and foal pastured behind our house. The mare was tolerant, not friendly, but not the type to pitch a fit when some kid squeezed through the barbed-wire fence to pamper her baby. It helped that the colt wasn’t a baby anymore, to be sure.
Generally, I would manage to sneak out with an apple, which the young horse would snarf down with relish. Then he would snuffle at my pockets in hopes of seconds. Horses are smarter than non-horsey people give them credit for. Horses know what pockets are for. Pockets are containers for apples, carrots, crunchy horse treats, sometimes even a handful of grain, preferably sweet feed. They do not care about the cries emanating from laundry rooms when mothers find pocket-loads of such goodies swirling in the wash.
One fine February day, I ventured out with only some small treat, nothing as appealing as an apple. It was chilly, so I wore my new(ish) red coat. And my pony friend bit me on the shoulder. Another thing non-horsey people may not know is that a horse can bite hard. They fight with their teeth–stallions even have extra-sharp eye teeth for those battles that make the front covers of old cowboy paperbacks.
That bite hurt. It hurt bad. I was not so horse-crazy that I didn’t run home for help. I was lucky to be wearing that insulated jacket–all my friend gave me was an enormous bruise, as the coat distributed the impact nicely. My mother was angry, scolding me for trespassing in the pasture but also clearly angry that the horse had hurt me. I took his part, explaining–convincingly, I was sure–that he simply mistook the red, rounded curve of my shoulder for a big shiny apple. It was my fault, I told her, for leading him to expect apples all the time and . . . most accurately, for turning my back on him. I loved horses, but I’d been hanging around them since I was six, and I knew better.
Bear with me. I’m getting there.
We were living in Montgomery because my dad was attending the Air War College, an academic-style officer-training program. It’s very like a master’s degree program in strategy, analysis, all that sort of thing. (My copy of Strunk and White is a discard from the library there, one my dad brought home for his aspiring-writer kid.) My mom grew up spending summers on “the farm”–her parent’s country get-away. My dad was a city boy through-and-through. Years later, I learned he was afraid of horses–that the thought of his kid galloping around on top of one of those monsters horrified him.
The War College program is only a year. One spring night, quite late, my parents stumbled into the house after some kind of semi-official party at the AWC. They, or at least Dad, had had a really fun evening. Really, really fun. My dad had received his next posting. As wing commander for a prestigious bomber wing. In North Dakota. We were moving to an air base where there was an on-base stable, in a state where horses were cheap to get and to keep.
“North Dakota is Rough Rider country, cowboy country,” my dad told me that night, his eyes bright and his grin much wider than usual. “So you can have a horse in North Dakota. Won’t that be great?”
When Dad sobered up, the next day, and recovered from his headache, the day after, Mom sat him down and told him what he’d promised me. And she held him to it. She wouldn’t let him back out of it.
So for the next four months, I thought to myself, over and over again, I’m getting a horse, I’m getting a horse, I’m getting a horse.
It’s happening again. I may be ever so much older than twenty now, but I’m having all those same feelings Though it’s not a horse this time. It’s a book. It’s my book. And it’s being published. For reals. For really reals. In four months.
It’s about a couple of strangers who meet up and have some troubles understanding one another.
Cross-species friendships can be complicated.
The book is All That Was Asked. It’s coming out from Paper Angel Press, a publisher based in San Jose, California. And it should be out in January of 2020. In the meantime, check out all the other books that Paper Angel Press has available.
This first-contact story explores the challenges of communication between species–when neither side has a universal translator to rely on, when the alien in question is so odd most people would consider it an animal, not a person, and when accidents and misunderstandings get in the way.
Ansegwe’s a tagalong, a wannabe poet, and the pampered offspring of a rich, powerful family. When faced with the choice of leaving an injured alien creature to fend for itself in the wilds of a strange world, he makes decisions that force him to contend with his own failings–but also help him discover his mission in life.
Available in hardcover, trade paperback, and digital editions on January 31st. Pre-order now! Free shipping for B&N members and on Amazon Prime.
