Tag Archives: autism

Bethanie Borst: A Middle-Grader’s Perspective on Middle-Grade Literature

Posted in Articles by

03Bethanie Borst is a 13-year-old with ADD and ASD. She writes twisted middle-grade fairy tales with her mom, Amie. Their first book, Cinderskella, releases October 2013! Bethanie can be found at http://www.facebook.com/AmieAndBethanieBorst You can visit her mom at http://www.amieborst.com and at http://www.twitter.com/AmieBorst.

Bethanie:  I’m not sure how to start this blog post.

Amie: *types*

Bethanie: Are you kidding me?

Amie: *smiles*

Bethanie: Stop writing everything I say! Now I’m mad.

Amie: Well, what do you want to say?

Bethanie: I don’t know.

Amie: *laughs*

Bethanie: Me being mad is cute?

Amie: *smiles* *types*

Ever seen the Allstate commercial?  “I’m a random windstorm. Shaky, shaky.”

http://www.youtube.com/watch?v=h4IKsGm4os4

Well, sometimes that’s how life feels when you’re a kid with disabilities.  Because I’m both very random and my life can be, well, pretty shaky.

I’m an avid reader and I read all types of books and genres. I never really paid any attention to whether characters had disabilities (or how many there were) until I was asked to write this blog post. Then I picked up my books and realized there were lots!

One of my favorite kinds of books is action adventure/fantasy. The Rise and Fall of Mount Majestic by Jennifer Trafton captured me as a reader. The main character, Persimmony, might seem like a normal kid to most people, but because I have a disability I get the vibe that she’s ADD.  Mostly it’s the way she talks and thinks. It’s all over the place. Much like me!

“Persimmony angrily kicked a stone (which, unfortunately for her toe, remained in place). ‘It’s all Prunella’s fault!’ she cried. ‘If she hadn’t pestered me about sweeping the floor right in the middle of my glorious dream about rescuing a baby from the teeth of a murderous alligator, I would have never have thrown the broom across the room. Then the broom would never have hit the Giving Pot, and I wouldn’t be here trudging through the Willow Woods in the middle of the night to fetch a new pot from Theodore. And with a storm coming, too!’”

Yeah, my brain kind of works just like that.

Ever seen the tee-shirt, “I’m not ADD, it’s just….hey! Did you see that rabbit?” Yup. That’s me.

Then there are paranormal stories.  School of Fear by Gitty Daneshvari has four kids with phobias. I have a fear of circuses. And screaming.  There’s also May Bird by Jodi Lynn Anderson. The main character sees ghosts. If I saw a ghost, I’d scream and then my phobia would kick into high gear! Ghosts don’t like salt and quartz.  Or spit. So I’d make sure I stockpiled that. *Patooey!*

There’s contemporary fiction like Waiting for Normal by Leslie Connor, Things Not Seen by Avi, Chasing Redbird by Sharon Creech, and Larger Than Life Lara by Dandi Mackall. These characters all have different disabilities. Not all disabilities have to have the same struggles. In Waiting for Normal, Addie is a dyslexic flute player. Bobby, in Things Not Seen, is invisible and is best friends with a blind girl. Zinny, in Chasing Redbird, suffers from depression when her favorite aunt dies. Zinny is also socially awkward and doesn’t like to talk, which makes me wonder if she might have something like Aspergers or ASD. But the best one of all is Larger Than Life Lara who is faced with obesity. Despite her body image, she’s a positive upbeat girl.

Everyone with disabilities handles their situation differently. I used to go to public school but advocated (more like begged) to be homeschooled. School was distracting, boring and disorganized (all those kids taping pencils, making noises and hours of homework made my brain feel like it would explode! Or be eaten by a zombie.). So I started homeschool last year in 7th grade. I went to a co-op and took high school classes and got all A’s (whereas in middle school I mostly got C’s, D’s and F’s.)

Homeschooling has been a great experience for me to learn the way I need to in order to succeed.  So, you can imagine how excited I was to read stories with characters who were homeschooled.  Stargirl by Jerry Spinelli features a girl who is very different from her peers.  While she does attend public school, she was previously homeschooled. This Journal Belongs to Ratchet by Nancy J. Cavanaugh has a main character (Ratchet) who is homeschooled. In my best opinion it wasn’t a great example of homeschooling, but maybe it is for other kids. In the book, Ida B by Katherine Hannigan, Ida was snippish when she went to public school and seemed much happier as a homeschooler. Although I’ve never been snippy, I’m definitely much more content to stay at home!  People have many reasons for homeschooling, sometimes it’s due to religious reasons and sometimes it’s because kids learn better in another environment.

There’s all sort of disabilities and many ways to handle them. I’m glad to see there’s a variety of books out there so readers can understand what it’s like to have a disability. Or for people like me so we can have someone to relate to!

Thanks for inviting me to be part of this Disability in Kidlit event, Kody and Corinne!

My mom said I should mention these other great links:
http://www.fromthemixedupfiles.com/2011/07/disability-middle-grade-novels/
http://www.fromthemixedupfiles.com/2011/04/shining-a-light-on-mental-illness/
http://www.fromthemixedupfiles.com/2010/09/learning-differences-in-middle-grade/
http://www.fromthemixedupfiles.com/2012/01/differences-superpowers-middle-grade-novels/

Bethanie and Amie Borst’s novel Cinderskella is available for pre-order at Barnes & Noble.

Cindy is just a normal 11¾-year-old. At least until she wakes up one night and finds out she’s dead. Well, she isn’t technically dead—she just doesn’t have any hair . . . or a nose . . . or skin. Yep—all bones, no body.

Human by day and skeleton by night, Cindy is definitely cursed. And because her mother recently died, Cindy has no one to turn to except a father who’s now scared of her and an evil stepmother who makes her do the housecleaning with a toothbrush. To make matters worse, the Spring Fling dance is approaching, and Ethan, the cutest boy in sixth grade, doesn’t seem to know Cindy exists. Of course, Cindy doesn’t think letting Ethan find out she’s part skeleton is the best way to introduce herself.

While facing such perils as pickled pig’s feet, a wacky fortune teller, and a few quick trips to the Underworld, Cindy’s determined to break the curse—even for a single night.

Marieke Nijkamp: Memories of Infinity

Posted in Articles by

Marieke NijkampMarieke Nijkamp is a writer, professional dreamer, and proud-to-be geek. She holds degrees in philosophy, history, and medieval studies, and loves learning new languages. In the midnight hours of the day Marieke is a storyteller, and all her stories – ranging from MG to YA, literary to fantasy – have a sprinkling of magic to them. Find her on Twitter. She is one of the founding YA Misfits and founder of DiversifYA, an inclusive community where people share experiences, in the hope that all of us who write will realize the world is much bigger than our little patch of earth. That we are diversity, and that one day our stories will reflect that.

Well I remember every little thing as if it happened only yesterday

We danced to Meat Loaf’s Paradise by the Dashboard Light, and sung along until our throats were sore. It was the last song of the night, but we didn’t want it to end. Not yet. Not now. Just one more song. We drew out time as long as we dared, until it snapped back into place and the clock continued ticking.

It was one of two proms I had, and though I’m sure I had a fantastic time during the second one–with the friends I’d made back in the “real” world, with college acceptance sorted, with the midnight blue dress that made me feel pretty despite the fact that medication caused me to lose so much weight that strangers on the street offered to feed me–the first one sticks in my mind.

By that time, I’d been living in the youth group of a medical rehabilitation facility for almost a year. One of many children and teens who had genetic or congenital disabilities, developmental disabilities, acquired disabilities, chronic illnesses… we were a collection of all sorts. Our school was a special school.

And I’ve always wondered what it would’ve looked like to the outside world, this dance of ours. (Would we be pitied?)

*

When I first got to that facility, at fourteen, my condition was such that I spent my days bed-ridden, reading.

By the time that dance came around, I’d found my way back to school. I spent my afternoons horse riding and swimming and other things that classified as physical therapy. In fact, I went to a plethora of therapies–and hated them all. But they were an integral part of daily life. Classes were scheduled around our therapies–not too hard in a class of four.

When I left at fifteen, I was sure I’d made friends for life. Because that’s how you feel when you’re fifteen. But at the same time, we all knew better.

During that year, we lost friends. Death was a part of life too. And sometimes it felt like the ones who finished their therapies were the ones that got away. Because it’s young-adulthood compressed in a year. Safe and scary and always in transit.

But sometimes we had moments when time stopped for us. (And sometimes, we didn’t want to grow up quite yet.) That night it felt like there were dozens of us. And at the same time it felt like it was only us. (Neither was true.)

*

When I got to the facility, it seemed overwhelming and threatening. I was an Aspie living in a group home.

Long, long before the dance it felt like the safest place on earth. Because within its walls we could be ourselves. We were all different. We didn’t have an understanding of normal, because there simply wasn’t one. And yet… We complained about the food. We complained about the curfew. We had competitive, kamikaze-like wheelchair games. We pulled pranks.

To the dulcet tones of Meat Loaf, it didn’t matter if you danced on two feet, two wheels, crutches. (Who cares, anyway?)

*

When I left home, it felt like such a different world. Not one I was used to–the walls and the bed and the occasional fragments of outside. The world I was used to only existed in books. They were my escape rope and my lifeline.

And yet.

I learned only minutes after arriving at the facility–where I came home, too–what a thousand books hadn’t told me.

That we weren’t Other. That we weren’t different. But that we were there, that we were us.

And that we existed.

And in that moment, I swear we were infinite. (Thank you, Steven Chbosky.)

 

Corinne Duyvis reviews GONE

Posted in Reviews by

Corinne DuyvisCorinne Duyvis is a YA author and portrait artist who lives in Amsterdam, where she writes, drinks a lot of tea, and gets her geek on whenever possible. She also sleeps an inordinate amount. Find her on Twitter.

Her debut YA fantasy novel Otherbound (Amulet/Abrams, 2014) is about a boy who’s spent ten years involuntarily witnessing the life of a mute servant from another world every time he blinks–and what happens when they discover they can communicate.

 

Cover for GONEMichael Grant’s Gone series came to a conclusion earlier this year with the publication of the sixth novel Light. I was lucky enough to get to read it early, and devoured it in record time. I grew up on the Animorphs books, which Michael Grant contributed to/co-wrote, and the Gone series shares several elements I loved: ensemble cast, heavy focus on characters, epic scope, moral dilemmas, high-stakes action, and utter addictiveness. In short: I sort of love these books.

… but I also sort of don’t. And the biggest thing that stops me is the portrayal of Little Pete, an autistic four-year-old boy. He’s the little brother of fourteen-year-old Astrid, who’s one of our main characters, and Pete becomes a significant character in his own right–in importance if not page time.

Spoilers will be clearly marked.

As an introduction, here’s how Pete and his autism are described in the first book, Gone:

“He’s autistic. Severely. He doesn’t–he doesn’t relate. He won’t answer [if I call to him], all right? I can yell his name all day.”

Little Pete was four years old, blond like his big sister, but freckled and almost girlish, he was so pretty. He didn’t look at all slow or stupid; in fact, if you didn’t know better, you’d have thought he was a normal, probably smart, kid.

“He talks,” Edilio said.

“He can,” Astrid said. “But he doesn’t much.”

“He talks. Great. What else does he do?” Quinn demanded pointedly.

“He seems able to do a lot of things. Mostly we’re good, the two of us. Mostly he doesn’t really notice me.”

“Petey is not intellectually impaired […] He has at least normal IQ, and may have a higher than normal IQ.”

In book three, Lies, he’s described as follows:

Little Pete was severely autistic. He lived in a world of his own imagining, unresponsive, only rarely speaking.

I’d like to discuss various aspects of Pete’s autism. For the sake of organization, I’ll break up this review into different sections. First, I’ll discuss the details of how Pete’s autism manifests; next, Pete’s role in the narrative, particularly in relation to his sister and the overall series plot; finally, the way Pete’s autism itself is perceived.

PETE’S AUTISM

I want to start this section with a big bold disclaimer: autism can present in many different ways. It’s not as simple as “Asperger” and “classical autism” and “PDD-NOS,” or “high-functioning” and “low-functioning,” or “severe” and “mild”—autistic people with high intelligence who seem social and easy-going may require lifelong live-in care; non-verbal autistic people may function independently and perform great in a regular college; and all the ranges in between.

Because of that, it’s difficult to point at something and definitively declare it Right or Wrong. Autism presents itself in seemingly unlikely ways for some people, and lord knows my own autism is very different from Little Pete’s. Still, there are a number of common symptoms, and there are many misinterpretations and misrepresentations in modern-day media, and that’s where I’m coming from.

And from that perspective, the portrayal of Pete’s autism never rang true to me. My biggest concern is Pete’s lack of responsiveness. Petey does occasionally react fiercely–I can think of at least two or three times he has a ‘freak-out’ in the series–but most of the time, he’s almost completely unresponsive and oblivious. This is even the case in extreme situations, which strikes me as nigh-impossible, given that one of the most common aspects of autism is a love of structure and familiarity. Unfamiliar environments and unexpected changes often result in stress which can manifest in different ways. Pete, however, doesn’t even acknowledge changes.

Take the following situations–all from Gone–as an example:

Little Pete rubbed sleep from his eyes and stared past them, indifferent to them, maybe not even aware that they existed. Maybe wondering why he was standing in the damp night air outside a nuclear power plant. Maybe not wondering anything.

Context for the following quote: Pete and his sister Astrid are in an unfamiliar hotel room, and someone is using a shotgun to blast through the door.

The door had a hole in it the size of a dime, with the metal puckered out.

Another explosion and the door handle was hanging half off.

Little Pete […] was still calm, still oblivious.

Context for the following quote: Pete is on a boat that just got hit full-on by a speedboat–their boat flipped into the water and back up, the metal twisted and torn, parts of the boat missing. There’s immense noise and panic. This is Pete’s reaction:

Little Pete was alone, staring, almost as if this at least had really penetrated his consciousness.

Pete is similarly unresponsive to touching, which many autistic people struggle with. His sister Astrid touches him in almost every scene they have together, with zero reactions: “he seemed barely to notice” (Gone); “of course he gave no response” (Hunger); “his indifferent body” (Hunger).

The way Pete tolerates Astrid’s touch isn’t necessarily improbable. In fact, some children with autism are extremely clingy with a select number of people. I would’ve accepted this as Pete simply being used to Astrid’s touch, if not for the way he fails to respond even when people who are practically strangers touch or even carry him.

This lack of responsiveness–indifference, blankness–may be realistic for some people with autism, but it’s extremely unusual. It struck me over and over again how rarely Pete actually interacted with the world around him. Most people with autism–even severe autism, even when non-verbal–do communicate in some way, and respond to stimuli, even if it’s not always in the “appropriate” way.

(For example, here’s a blog post about this from the perspective of a seemingly “unresponsive” autistic person.)

Getting caught up in particular interest, like Petey’s video game, definitely happens, but usually not to the extent that he’d be able to  experience the quoted situations without any response. Those situations would be completely overwhelming.

Similarly, in Gone, the following occurs:

[Astrid] had a particular way of talking to Little Pete when she wanted his attention. She held his face in her hands, carefully blocking his peripheral vision, half covering his ears. She put her face close to his and spoke calmly but with slow, careful enunciation.

I can see the logic of blocking sensory input, but most autistic people I know–including myself–would be scared shitless by this. Being held still on both sides, a face so close to your own, is nothing but sensory input.

Again: it might be fine for some people… but it’s likely to be an exception.

The books also fail to acknowledge other common aspects of autism: Pete seems to have no problem with eye contact, which is a frequent point of difficulty for autistic people. In addition, many autistic people struggle with particular flavors and textures of food, which can make meals an adventure the moment we stray from familiar brands or methods of preparation. In the Gone series, the characters quickly run out of food and often improvise their meals with whatever is at hand. Yet, no mention is made of Pete ever having a difficult time with this.

Petey does occasionally react in ways that are common to autistic people. He’ll rock back and forth, flap his hands, and repeat words he’s just heard others say–all of which is very common. I’ve done it! Over six books, though, he only acts in ways I recognized a small handful of times. While I don’t want writers to simply go down a checklist of symptoms when writing autistic characters–as I mentioned, symptoms vary widely–in combination with the other points I raised about Pete’s portrayal, his unusual behavior struck me as more of an oversight than a deliberate choice.

HOW THE NARRATIVE TREATS PETE AS A CHARACTER

You can look at Pete’s role in the books from multiple angles: how other characters interact with him, his role in the overarching plot, and how the narrative treats him. All of that coheres quite neatly into one conclusion, though: Pete is a prop.

This is particularly evident in the scenes from his sister Astrid’s perspective. Even though she’s “the person he’s closest to in the whole world” (Gone) she doesn’t seem to communicate well with him. She recognizes when he’s about to freak out, but not whether he’s hungry or whether he fears, enjoys, or understands something. Even if Pete expresses himself differently from other kids, a sister would learn at least some of those habits by virtue of seeing him grow up. Without that insight, Pete’s character feels flat, and his and Astrid’s sibling relationship feels like it’s written from an outside perspective.

The narrative emphasizes all of this by sympathizing strongly with Astrid, to the exclusion of Pete himself. Astrid is his sole caretaker due to the disappearance of their parents–and every adult in town–and it’s continually pointed out how hard it is for her to have a brother like him. Consider these quotes from GONE:

She put one protective arm around Little Pete, who had buried his face back in his game. Astrid blinked, looked down, took a deep shaky breath, and deliberately turned away.

Astrid rose and without really thinking about it wrapped her arms around Sam like she did when she was trying to comfort Little Pete.

But unlike Little Pete, Sam responded to her touch by awkwardly hugging her back.

[S]he had to keep Little Pete calm. That was her top priority, her brother. Her blank-faced, helpless, unloving brother.

She resented him. He had turned her into a mother at age fourteen. It wasn’t right. This should be her time to shine, to be bold. This was her time to use her intellect, that supposedly great gift. Instead, she was a babysitter.

She hated him for being what he was, for being so needy […]

Astrid dropped to the ground, shielding Little Pete again, still, always protecting Little Pete.

Quotes from Hunger:

She bent over to kiss him on his forehead. Of course he gave no response. He didn’t hug her or ask her to read him a story, or say, “Hey, thanks for taking care of me, sis.”

When he spoke, it was only about the things in his head. The world outside meant little or nothing to him. That included Astrid.

She lay down beside her brother and cuddled close to his indifferent body.

“Sorry,” she said to Little Pete, who was as indifferent to her apology as to everything else.

She stepped back, stepped away, not trusting herself to be near him. Hating him at that moment. Terrified that the enraged thing inside her head would lash out at him again. A voice inside her rationalized it even now. He is a brat. He does these things deliberately.

It was all his fault.

“Ahhh ahhh ahhh ahhh!”

“I do everything for you!” she cried.

“Ahhh ahhh ahhh ahhh!”

“I feed you and I clean you and I watch over you and I protect you. Stop it! Stop it! I can’t stand it anymore. I can’t stand it!”

She wondered if he even remembered her loss of control. She wondered if he knew how terrified she was, how hopeless and defeated. She knew he didn’t care.

No one cared.

Part of Astrid’s feelings are understandable–being a caregiver is hard, and Astrid had to deal with that on top of enduring extreme trauma. There’s a lot of resentment, obligation, and guilt when she thinks about Pete. Although it made me wince to read, it’s a believable reaction for someone–particularly a teenager–in her position.

What seems less realistic is the lack of affection. Pete is portrayed as a burden, never as a beloved brother. Astrid says she loves him, and shows concern, but never once does she sincerely smile looking at him or seem to feel even a hint of affection. On top of the seeming lack of understanding, that made the love feel hollow.

That’s why Pete feels like such a prop: he’s there purely to make Astrid sympathetic. Pete doesn’t get to be a character in his own right, with his own personality, likes, dislikes, or agency. He has no opinions on or reactions to anything that happens. He alternates between acting as a plot device and sitting around mysteriously playing his game. Even when Astrid is forced by the antagonist to call Pete a retard, the text lingers on how difficult it is for her to betray him without giving Pete any reaction of his own–“They were meaningless words. Just words. Little Pete didn’t care.” (Gone) and “He had forced her to insult Little Pete. To betray him. It hadn’t bothered Petey, of course.” (Fear)

This quote from Light emphasizes his lack of agency and personhood even more starkly:

Little Pete was not thought to have done it maliciously–Petey was incapable of malice. Or any intention, really.

Details in the narrative also seem to treat Pete very differently from the rest of the characters. His descriptions struck me as fey and Other: he’s described as “almost girlish, he was so pretty” and as his eyes are referred to as “too-pretty” and “those innocent eyes.” (Gone) Sometimes, it strongly feels like he’s being dehumanized–treated as an animal, an object, or even a computer to be programmed. Consider these quotes from Gone:

[Astrid] started to move away, but Little Pete began to whimper. It was the sound a puppy makes when it wants something.

Little Pete began to screech. It was a primitive sound. An earsplitting, insistent, repetitive, panicky baboon sound.

“I can’t kiss you with your little brother watching,” Sam said.

Astrid stepped back, took Little Pete by the shoulders, and turned him so he was facing away.

“How about now?”

Hunger:

It was time to get Little Pete ready for bed. [Astrid] stood up and called to him, using the trigger phrase he understood. “Beddy boody, beddy boody.”

Little Pete gave her a hazy look, as if he had heard her but had not understood. Then he got up from his chair and headed obediently up the stairs. Obedient not to Astrid’s authority, really, but to what was, in effect, programming.

Lies:

Little Pete howled like an animal. Howled like a mad thing, howled in a voice impossibly large.

“Ahhhhhhhh!” A cry of loss, a mad tragic cry.

He bent into a backward “C” and howled like an animal.

In the fourth book, Plague, Pete isn’t even a regular PoV character. Where the other characters get scenes in regular, numbered chapters, Pete’s scenes are treated more like interludes; they’re labeled with his name, in between numbered chapters. That really hit home how separately he’s treated from the rest of the cast.

These things would bother me on their own, and put together, they tick practically every box of the “dehumanization” checklist, which is unfortunate in a series that otherwise features such strong, vibrant characters.

Sadly, his role in the overall story arc isn’t much better. The next few paragraphs contain significant spoilers.

–START SPOILERS–

…

In the overall story arc, Pete is a similar prop. The trope of “Disability Superpower” is one with a long history, and even in a book where lots of people have superpowers, Pete is still the special one, with nigh unlimited power. Because this is such a familiar trope, and this review is long as is, I won’t go into this too deeply. Instead, I’ll link to other sites tackling the topic:

http://io9.com/5879242/why-do-we-want-autistic-kids-to-have-superpowers

http://tvtropes.org/pmwiki/pmwiki.php/Main/DisabilitySuperpower

http://tvtropes.org/pmwiki/pmwiki.php/Main/TheRainman

In addition, while I wouldn’t exactly call Pete “cured” after Plague on account of him, er, sort of dying, he’s still a conscious entity who’s suddenly no longer autistic. That falls into a different trope–the Disability Cure. Only without his autism does Pete end up saving the day, and even then it’s not because he’s grown over time, or realizes that what he did was bad, or wants to help his sister, or anything: it’s because “hitting is bad” and it made him upset.

While that’s not necessarily an unlikely motivation for a five-year-old, it doesn’t help the already simplistic portrayal of his character. In the end, Pete saving the day only reduces him to more of a plot device. I can’t see his role in the books as anything but a way of putting the cast in a far-fetched situation and promptly solving it once the series ran its course. Afterward, he doesn’t even get to have a happy ending: he dies for good.

…

–END SPOILERS–

However, as displeased as I was about both the depiction of Petey’s autism and his role in the books, it wasn’t until we got scenes from Petey’s own perspective that the books became genuinely upsetting for me to read.

PERCEPTIONS OF PETE’S AUTISM

When the reader first encounters Pete’s point of view and thus gets an inside perspective of his autism, I was a little unsure. To me, the sequences came across more like what a non-autistic person would imagine autism to be like, rather than how someone with autism would experience it themselves.

An example from Lies:

Little Pete woke up.

Dark. Dark was good. Light filled his brain with too much.

It was quiet. Good. Sounds made his head hurt.

He had to be quiet himself or someone would come and bring light and noise and touching and pain and panic and it would all come at him like a tidal wave a million feet high, spinning him, crushing him, smothering him.

Then he would have to shut down. He would have to turn it all off. Hide from it. Go back to the game, back to the game, because inside the game, it was dark and quiet.

From Plague:

Down there were his mom and his dad and his sister. Down there were jagged edges and harsh noises that made him want to clap his hands over his ears. When he looked at those things, those people, the wobbly, insubstantial houses, the sharp-edged furniture, the claw hands and hooked noses and staring, staring, staring eyes and yelling mouths, he wanted to close his eyes.

But it didn’t work. Even through his closed eyes he saw them. And he heard them. But he did not understand their wild, pulsating colors. Sometimes their words weren’t words at all but brilliant parrot-colored spears shooting from their mouths.

Mother father sister teacher other. Lately only sister and others. Saying things. Some words he got. Pete. Petey. Little Pete. He knew those words. And sometimes there were soft words, soft like kittens or pillows and they would float from his sister and he would feel peace for a while until the next jangling, shrieking noise, the next assault of stabbing color.

On the other side—the agitated, jangly, hard side—his sister, her face a stretched mask beneath yellow hair, a mouth of pink and glittery white, loud, was pushing at him with hands like hammers.

After a long and peaceful escape he had been recaptured by the too-much world of furious activity and disjointed images.

From Light:

Life had always been strange and disturbing for Peter Ellison. From the moment of his birth the world had attacked him with noise and light and scraping touch. All the sensations that were easy for other people to make sense of were terrifying and overwhelming for him. Other people could filter things out. Other people could turn down the noise, but Pete could not.

Since experiences of autism can differ so much person-to-person, the above descriptions may ring true to some people. For me, though, they veered on simplistic. They take one aspect of autism–sensory overload–and extrapolate from there what autism must feel like, taking it into an almost cartoonish realm.

Much worse, though, is exactly how Pete’s experiences with autism are described.

The narrative talks of “the tortured, twisted, stunted brain that had made the world so painful to him” (Plague); “his distorting, terrifying brain” (Plague); “his strange, distorted brain” (Fear); “a twisted, distorted brain” (Fear); “miswired brain” (Fear); “his jangled life” (Fear); “the severe autism that had crippled him” (Light); “a life that had been short but painful” (Light); “his brain had been his enemy all his life” (Light); “a strange little boy whose own brain made him a prisoner, whose own mind made life painful and terrifying. Unbearable.” (Light)

At one point in Fear, Pete even wonders, Had he ever laughed before?

And this, to me, is where Pete’s portrayal went from “doesn’t feel truthful, contributes to misconceptions of autism” to “outright damaging.”

His autism is portrayed over and over again as being non-stop pain and suffering. That got incredibly hard to read: do people really think this is what autism is like? Even if the author’s intention is to show understanding and sympathy, portraying our experiences this black-and-white is hurtful and borders on demeaning. Our autism might make things harder, and people might struggle to understand us, but that doesn’t instantly translate to suffering. To the outside observer, things like rocking back and forth, flapping hands, being blank-faced, compulsively arranging objects, screaming, etc. may look like being trapped, but they probably look completely different from the autistic person’s perspective. Any of the above can translate to fear, tension, relaxation, happiness, excitement, or a dozen other things.

When I quoted the above excerpts to a fellow autistic friend, she commented about how it was akin to the kind of speech used by Autism Speaks, a supposed charity that’s notoriously unfriendly to autistic people. There, it’s fear-mongering; here, however well-intentioned, it’s still misrepresenting and damaging. This depiction of Little Pete skims the surface, and invites pity and horror from the audience. That’s not what autistic people need, even those who do suffer from their autism.

Presenting the experiences of autistic people as a non-stop nightmare risks putting the blame on the autism itself. It implies that autism equals suffering, and there’s no fixing it. It absolves people of the responsibility to look further and adapt.

And that’s dangerous.

I’ve often recommended the Gone series: in addition to the gripping story and characters, the series strives to be inclusive, with positive portrayals of queer people, people of color, and fat people. Unfortunately, I think it failed when it came to Pete. Although I recognized a handful of details of Pete’s autism, for the most part, his behavior felt either unlikely or flat-out wrong. In addition, he seemed to be treated less as a fleshed out character in his own right and more as a prop, often by indulging in damaging tropes.

Pete’s portrayal has both angered and hurt me, but in the end, seeing these sorts of things pop up in books I could almost love if not for…?

It just saddens me.

I hope this review helps people understand why, and perhaps recognize and avoid these tropes in their own work.

Jacqueline Koyanagi: Autism Spectrum Disorder, Fibromyalgia, and Invisibility

Posted in Articles by

Jacqueline KoyanagiCover for ASCENSIONJacqueline Koyanagi was born in Ohio to a Japanese-Southern-American family. She now lives in Colorado where she weaves all manner of things, including stories, chainmaille jewelry, and a life with her loved ones and dog.   Her stories feature queer women of color, folks with disabilities, neuroatypical characters, and diverse relationship styles, because she grew tired of not seeing enough of herself and the people she loves reflected in genre fiction.

Her debut novel, ASCENSION, comes out from Prime/Masque in August 2013 (ebook) and December 2013 (trade paperback). You can connect with Jacqueline on Twitter or visit her website.

I’ll never forget the moment I realized something wasn’t quite right. I sat with one of the few people in my high school I felt safe enough around to call “friend,” surrounded by the sound and movement and color and sheer overstimulating white noise that was high school. Watching other kids move around so quickly, unplagued by pain and overstimulation and exhaustion and confusion, my long-standing frustration hit the ceiling.

I took all the words that had been hiding under my tongue and forced them out. I said, “I don’t understand where everyone gets their energy. I look at them and they seem like they’re always awake and alert and none of this noise bothers them. I’m almost always overwhelmed, and I’m always tired and in pain.”

My friend turned to me with a face full of genuine concern and said, “Really?”

With that one word, that one look, it hit me that my experience really was abnormal.

Until then, I’d assumed I was lazy. Weak. Oversensitive. By confessing to my friend, I’d been hoping to hear something like,Oh, we all feel like that. High school makes all of us tired. No one likes noise. Socializing is hard for everyone. You just need to try harder.

It would have meant there was an easy answer. It would have meant the problem was me, that my struggling was easily overcome by sheer force of will. It would have meant bootstrapping myself until I was functioning at full capacity, because that’s what we’re meant to do, right?

In my teenaged eyes, everyone else was running a marathon with ease, looking at me with confusion while I struggled to make one lap around the track. Surely, I just needed to push harder, run longer, build up my endurance. That’s what I’d believed, what I’d been told. That’s the narrative I’d learned from countless stories, lessons, motivational posters.

Instead, with my friend’s one-word puzzled response, I knew: Something in me was different. Not just lazy or weak, but fundamentally different from the kids around me who had so much energy and easy enthusiasm that they lost me in the fray.

Both physical and mental health care and awareness being what they are, I didn’t find answers until well into my adulthood.  “Asperger’s Syndrome,” they said (though the DSM-V now categorizes this as autism spectrum disorder). “Somatic sensitivity comes with the territory. Of course you can’t figure out how to befriend your peers—you’re running different brain-software on different brain operating systems. You need a cross-platform piece of communication software that you can share.”

“Fibromyalgia,” they said. “Your muscles and joints are on fire, your body is fatigued, your sleep cycles are shot, because you have this thing for which we have a name. The pain and fatigue aren’t just normal byproducts of living; they’re symptoms of an invisible disability. And we have things that can help alleviate the severity of the symptoms. We can help you structure your life in a way that will let you seize the good days and rest on the bad days, because you will have both, just as you always have, and it’s okay.”

“You are okay,” they said.

“You are allowed to be in pain,” they said.

“It’s not all in your head,” they said.

Strangely enough, cupping these labels in my hands, I finally felt not-broken. I felt like I was allowed to exist exactly as I was. I felt seen for the first time in many, many years.

That feeling of not-brokenness comes and goes, but the diagnoses helped tremendously. They were, and are, freeing. They’ve given me permission to be who and what I am. They’ve given me permission to have the brain that I do, the body that I do. That doesn’t mean I don’t strive to overcome the disparity between myself and the expectations of the world around me; for me, it just means that the disparity isn’t the result of my obstinacy or laziness. It’s just a disparity.

It just exists. I just exist.

I am disabled. For me, that knowledge is empowering. I wish I could visit my teenaged self and tell her that it isn’t all in her head, that there’s a reason people found her social awkwardness frustrating, there’s a reason loud auditoriums and shouting kids made her want to run away, there’s a reason she has the physical tics she tried so hard to suppress, that there’s a reason she’s in pain and exhausted all the time, that there’s a reason she’s trying not to cry in History class because sitting up nearly made her pass out from the shooting pains in her neck, back, hands, and legs.

I want to tell her she’s disabled, because it would have changed her life nearly twelve years early. She would have given herself permission to not berate herself when she didn’t understand social cues. She would have given herself permission to stand up for herself when her abusive family member gaslighted her about her then-undiagnosed autism spectrum disorder. She might have even given herself permission to stim when she needed to, instead of feeling shame that the impulses existed at all.

She would have had opportunities to thrive that were hidden from her out of ignorance.

This is why we need a culture of awareness. I can’t go back and tell my teenaged self these things, but I can live on her behalf. As a diagnosed adult, I can tell people, “No, I can’t go out with you—I need to rest today.” I can tell people that I’m on the spectrum and what that means, so our social expectations are on the same page. I can tell someone when sensory stimuli are too much and I need to leave.

I can use all of this incredible, wonderful knowledge to cultivate a life full of relationships and work and hobbies that give me room to exist as a disabled person.

That is empowering. I hope the teenaged me, somewhere deep inside myself, feels cared for and seen in a way she never did in high school. I hope the kids in high school today are being given the chance to thrive I never had. And I hope they have the chance to read stories featuring kids like them, human beings like them, who aren’t conceptualized as broken. I want them to have a different narrative than the one I was given.

They deserve it.

Corinne Duyvis reviews YOU LOOK DIFFERENT IN REAL LIFE

Posted in Reviews by

Corinne DuyvisCorinne Duyvis is a YA author-slash-portrait artist who lives in Amsterdam, where she writes drinks a lot of tea and gets her geek on whenever possible. She also sleeps an inordinate amount. Her debut YA fantasy novel Otherbound (Amulet/Abrams, 2014) is about a boy who’s spent ten years involuntarily witnessing the life of a mute servant from another world every time he blinks–and what happens when they discover they can communicate.

Cover for YOU LOOK DIFFERENT IN REAL LIFEFor someone who always crows about wanting to read/see more autistic characters, I’ve actually read an embarrassingly little amount of books fitting that criterion. I’m continually hampered by the size of my TBR pile, deadlines, and an assortment of other issues, and usually only come across autistic characters by accident.

So when author Jennifer Castle offered to send me a copy of her latest novel—You Look Different in Real Life, a contemporary YA–to review on Disability in Kidlit, I jumped at the chance.

Going in, I was both curious and apprehensive; all I knew was that it featured an autistic character. I’m relieved to say I’m pleasantly surprised with how the character was portrayed, although I’m not without reservations.

The book is about five teenagers who starred in documentaries at ages five and eleven, and now, at age sixteen, the next installment awaits—but a lot of issues have cropped up between the five of them over the years. They’ve changed since age eleven, and not always in ways they’re happy with. The cameras and film-makers forcing them together brings all these issues to the surface.

This review focuses on Rory, one of the teenagers in the documentary, who was diagnosed with an autism spectrum disorder at some point between ages eleven and sixteen. Though best friends since childhood with our narrator, Justine, they broke up due to Justine’s frustrations with Rory’s behavior. Justine shares various memories of Rory being unable to sleep over at Justine’s house, of Rory completely—and awkwardly—misreading situations, and Rory being bossy and always demanding that things go her way.

Since Justine is our point of view character, one can expect the portrayal of their relationship to be slanted to make Justine’s actions look sympathetic and understandable, but the narrative is surprisingly balanced; Justine knows she was wrong in unceremoniously dumping Rory, and there’s clear longing and regret woven into their current-day interactions.

In other words, Rory has an actual role in the story. She’s sympathetic, she’s funny, and her role is much more “Justine’s ex-best friend” than “the weird autistic one.” She has interests—obsessive ones, natch, largely online-based—and gets to have complex feelings about both the situation they find themselves in and about Justine’s behavior old and new.

All of this delighted me: it’s such a change from the autistic characters I normally encounter in fiction, who are often reduced to props, and who rarely get to display emotions or opinions.

I was also quite pleased with the depiction of Rory’s autistic traits. I completely recognized myself in the way Rory will only briefly make eye contact, then look away—then making another brief moment of eye contact, then looking away again. I do that exact same thing. The way she forced out social niceties was familiar, as well. While I’ve become pretty good at making those things second nature over the years, they weren’t before. (As a teenager, I taught myself to say “good night” to people when parting ways in the evening, then accidentally blurted it out during mornings and afternoons as well.)

Her obsessive interests, her bossiness, the way she separates her food on her plate or aligns objects, her skill at navigating: it’s clear the author did her research instead of falling back on tired assumptions. Both Rory’s autism and the way she’s adapting and learning rang absolutely true to me.

There’s a lot to like, basically, but I did have some reservations. The biggest of these is that so much of Rory’s character and role in the plot are intrinsically tied into her autism. Examples:

  • Her role is to be the ex-best friend–which is great–but the reason for the “ex” part is Rory’s autism.
  • She’s the quiet, odd, awkward one in the group; these traits are linked directly to her autism.
  • Ditto for her hobbies–she says they help her understand people.
  • Every flashback sequence with Rory directly focuses on her autism.
  • Almost every time we see Rory on page, particularly in the first half of the book, her autism is emphasized in some way or another. Instead of simply saying something, it’s mentioned how she says it “flatly” or has to think about it for a while. Instead of simply walking, her gait is described. The way she’s singled out as being unusual happens practically every time the character performs any action, to the point where I did a double-take the first time she’s mentioned as doing dishes without the narrative lingering on it.
  • Rory’s development is all about how she manages to push beyond her boundaries. While I really liked these scenes, they again center around her autism.

Autism is absolutely a big part of most autistic people’s lives; I have no problem with it being woven into many different aspects of a character. Autism isn’t simply a quirky/tragic accessory that can be separated from someone’s “actual self.” That said, I did find it problematic that Rory seemingly did not have any history, interests, traits, or behaviors that could just be Rory instead of Autistic Rory™.

The character ends up very much defined by her autism, which is a shame; it wouldn’t have taken more than a few tweaks to round her out and make the autism simply a part of her character rather than dominating it.

Other parts that made me hesitant were the way she’s portrayed as “endearing” and the other characters hover over her in such a motherly way. This sometimes gives Rory a little-sister vibe rather than a classmate vibe.

However, that was still handled better than I would’ve expected. For one, it’s textually acknowledged: in a scene when they’re keeping an eye on her from a distance, one character asks, “Does she know she’s got the Secret Service here?”

For another, when Rory is struggling with sensory overload, a character simply asks her, “How can I help?” and asking this question is unequivocally portrayed as being the absolute best thing to do. When they brainstorm solutions that might help Rory through a difficult situation, she’s fully involved in this discussion. She has the final say in what happens, and people respect her agency instead of shoving her around.

In a world where autistic people are often seen as a Problem That Must Be Dealt With, that’s something I appreciated a lot.

A final point of criticism is that in this five-member group of teenagers, with disabled, queer, and non-white characters, it’s quite a shame that our narrator is the straight, white, abled girl of the group. I really enjoyed the book, and I dug Justine’s predicament—she was the break-out star of the first two documentaries and feels like she hasn’t lived up to that potential—but I found the other characters more interesting, and I can imagine flat-out loving the book if it had been from one of their perspectives. (Understandably, I’m particularly biased toward Rory being our protagonist.)

As is, though, I appreciated a lot about You Look Different in Real Life; it’s one of those novels that makes me want to read a lot more contemporary YA. While Rory’s portrayal isn’t flawless, it’s well-researched, and a significant step in the right direction of treating autistic characters as regular teenagers and integral parts of the cast.

s.e. smith reviews MARCELO IN THE REAL WORLD

Posted in Reviews by

s.e.smiths.e. smith is a writer, agitator, and commentator based in Northern California, with a journalistic focus on social issues, particularly gender, prison reform, disability rights, environmental justice, queerness, class, and the intersections thereof, with a special interest in rural subjects. International publication credits include work for the Sydney Morning Herald, The Guardian, and AlterNet, among many other news outlets and magazines. smith’s writing on representations of disability in science fiction and fantasy was recently featured in The WisCon Chronicles, Volume 7. Assisted by cats Loki and Leila, smith lives in Fort Bragg, California. You can follow s.e. on Twitter, ou personal site, Goodreads, and lots of other exciting places online.

Cover for MARCELO in the REAL WORLD(Note: this review discusses the ending of the novel.)

Francisco X. Stork (and how much do I love that name, let me tell you) writes about Latino teens on their voyages to adulthood and coming of age, bringing an important voice to young adult fiction, which is so often uniformly white. His 2009 novel Marcelo in the Real World follows the journey of a teen with an unspecified cognitive impairment most often textually described as ‘Asperger’s’ or ‘Asperger’s-like,’ suggesting that he lies somewhere on the autism spectrum. The narrative captures Marcelo at the teetering point behind childhood and adulthood as his father pushes him to ‘enter the real world’ while his mother expresses hesitations, and Marcelo wrestles with his own private feelings about the world and the people in it.

While we’re never told exactly what Marcelo’s impairment is, and it’s implied that no one can quite figure it out, it shares many features that will be familiar to those of us on the autism spectrum. Intriguingly, Marcelo himself seems reluctant to identify with that label, arguing that he doesn’t experience impairment as severe as that of some of the children at the school for disabled learners he attends. In this framing, he’s not disdainful (as seen in the ‘functioning wars’ witnessed in some corners of autistic culture), but attempting to be respectful—he talks essentially about not wanting to appropriate the experience of people who may essentially never be able to front in the way he does, to perform in the ‘normal’ world.

Yet, he also questions the value of normative versions of society and wonders whether this so-called real world is really such an important thing to be integrated into:

‘The term ‘cognitive disorder’ implies that there is something wrong with the way I think or the way I perceive reality. I perceive reality just fine. Sometimes I perceive more of reality than others.’

Marcelo is easily overwhelmed by stimuli, sharply observant when others are not, but still troubled when it comes to interpersonal interactions. He prefers his communications to be direct, clear, and unmistakable, even as he probes complex thoughts about religion and the nature of consciousness. And, like many people with cognitive impairments, he’s accustomed to being treated like an object by the people around him; he’s well aware of what the pauses in speech when people are talking about him mean, he’s fully conscious of the fact that people think he’s an ‘idiot’ and a ‘retard’ because he perceives the world differently and appears to move more slowly than the people around him.

Marcelo is fortunate in that he has access to an excellent school that helps him develop coping skills and tools for interacting with the world, while still maintaining his independence and fundamental sense of consciousness. All too often, it seems like those of us on the spectrum are expected to mold ourselves to society; we must be taught how to behave and look like ‘normal’ people and suppress behaviours that are natural and comfortable to us. Marcelo’s school, on the other hand, provides people with an opportunity to be themselves.

Yet, his father insists on making him come to work for his law firm during the summer, and that plunges Marcelo into a world where his plans and routines are disrupted, he can’t work with the Halflinger ponies he loves, and he’ll face some unexpected ethical quandaries. They’ll test his understanding of normality and humanity, while also forcing him to make some very difficult choices.

One of the things that I love about Marcelo in the Real World is that it’s narrated intimately from the first-person perspective of an autistic person, rather than being about autism. Marcelo has a voice here, and it’s clear and loud; we get to read both about what he is thinking internally, and how he is interacting with the people around him. His thought processes and attempts to grapple with concepts that are slippery and strange are laid out for examination and discussion, which is a departure from the way life on the autism spectrum is often depicted.

Instead of being told what autism is about and how autistic people think, readers are living it. And when those readers are autistic, they’re finally reading themselves as heroes and encountering a character whom they can deeply associate with, which is a huge thing. Especially in the years of coming of age and trying to navigate a society where everything is shifting and people are bound up in double entendres and attempts to make themselves seem wiser than they are and positioning themselves for the next big thing, being autistic can be very isolating. Reading that your experiences are not freakish and abnormal can be empowering.

What Marcelo in the Real World represents, in a lot of ways, is similar to my own experience, and I know I’m not the only one. Though I experience things he does not (and vice versa), I understand his world on a visceral level. I know the feeling of hearing words but not understanding what they mean and how they’re being used in this context and feeling lost and isolated. I understand the sensation of feeling like my head is exploding because I’m being asked to process too much. And I’m familiar with being around people who make assumptions about me and think I won’t understand what they’re assuming, and what the implications are.

Stork has managed to capture an authentic depiction of one facet of the autistic experience, though it’s notable, of course, that he chose an experience of someone at a point on the spectrum that allows for a highly successful degree of fronting and performance. Most books about the autism spectrum involve people at this point, with very few touching on, for example, nonverbal autistic people, or autistic people who can’t front well, let alone people who choose (and are able to choose) to reject performances of neurotypicality.

Thus, I can’t say that they wholly humanise autism, because they don’t depict the full diversity of the spectrum, and they also humanise only a very specific form of autism, and that’s the one closest to and perhaps most understandable to the neurotypical reader. Is it really a bold blow for the autistic community when all the narratives about autism are only about one kind of autism, and it’s one neurotypical readers can easily connect with?

Shouldn’t neurotypical readers also be made to feel uncomfortable with autism stories? Confronted with their own attitudes and prejudices about autism? Marcelo in the Real World pushes at that, challenging the reader to ask why Marcelo is treated like a child, but it could be a much more radical and aggressive book if it wanted to be.

Especially since, in the end, this is a book all about how Marcelo was able to ‘overcome’ and enter the real world. It’s notable that his life goals remain consistent throughout the book—at the start, he says he wants to train Halflinger horses and work as a hippotherapist, and he says that again at the end—but there’s also a hint of an idea that Marcelo’s father Arturo made the right choice by ‘forcing him out of his comfort zone’ and giving Marcelo what amounted to an ultimatum instead of an actual choice when it came to working with the ponies for the summer, or working in the law firm.

Thus, readers were ultimately reminded at the end that ‘good’ autistic people are able to succeed and perform in a neurotypical world, and that those who do not just aren’t trying hard enough, or aren’t whole people. And that’s a troubling note to leave readers on in a text that is otherwise a very striking depiction of the autistic experience. I would have loved to see the very notion of ‘reality’ more directly challenged and confronted in this text, with a larger conversation about the reification of cognitive functioning in society that marginalises some and praises others.