Friday, March 23, 2018

The Problems with Functioning Labels

Talent Show - Summer Academy 2014
Photo © City Year | Flickr/Creative Commons
[image: Photo of a Black young man with short hair, close-cut beard, and
glasses, holding hands out to sides while on stage during a talent show.]
Finn Gardiner

Many professionals talk about autistic people’s “functioning labels.” Functioning labels are a way to describe how well people learn, take care of themselves, and live in the community. People will often talk about “high-functioning” and “low-functioning” autistic people when they are describing them. Even though people who talk about high-functioning and low-functioning autistic people often mean well, these labels are not accurate for many people. Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time. 

Many people use people’s intelligence to determine whether they are high-functioning or low-functioning, but many autistic people’s daily living skills are not affected by how intelligent they are. Someone can learn quickly and have a hard time with daily living skills, while someone else who learns more slowly can find the same skills easy most of the time. Using these labels can make it hard for people to get services. If you do not have an intellectual disability, agencies may tell you that you are high-functioning and do not need help, even if you’re struggling to stay fed, clothed, and clean. If you do have an intellectual disability, you may be told you are low-functioning even if you don’t need as much help with daily living skills. 

Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life. People have said I was “high-functioning” for most of my life, but when I was very young and was non-speaking, they would have said I was “low-functioning” because they thought I had an intellectual disability. Saying that people are “low-functioning” is especially hurtful, because it means that some people will have low expectations of you and will not expect you to learn, grow, and pick up new skills. 

When some doctors thought I had an intellectual disability, one of them said I would never learn anything. I do not have an intellectual disability, but even if I did, I would still be able to learn things. Everyone can learn and pick up new skills over time, whether or not they have an intellectual disability. This is part of why saying “low-functioning” is hurtful. 

Also, people’s functioning can change over time. People can need more or less support with daily living skills for several different reasons. Sometimes they can be having a bad day, or be depressed, or be going through major life changes that cause them stress, or it could be the opposite. Feeling good about yourself may make it easier to do tasks that would usually be hard for you. A “high-functioning” person may be having a bad day and have a hard time with self-care tasks like bathing, cooking, shopping, and dressing. A “low-functioning” person can have a good day, week, or month and do relatively well with the same tasks. 

Instead of talking about functioning labels, we should talk about the specific kinds of support people need. Professionals should treat autistic people and other people with disabilities as individuals that have their own needs instead of just saying that they are high- or low-functioning. Everyone is different and deserves help that will make sure they live the best life they can.

Wednesday, March 21, 2018

Autism Uncensored: A Dangerous and Spirit-Crushing Book

Photo © Charley Lhasa | Flickr/Creative Commons
[image: Plush red Elmo doll lying on asphalt.
A yellow chalk speech bubble has Elmo appear to be yelling "Help!"]
Maxfield Sparrow

[Content note: Extensive discussion of restraints. Discussions of gaslighting, denying Autistic autonomy and competence, child abuse, autism profiteering, and similar goblins. Discussion of the 1960s medical view of autism as it continues to occur today.]

You may have seen the recent Washington Post article titled “Bystanders were horrified. But my son has autism and I was desperate,” an excerpt from Whitney Ellenby’s new book, Autism Uncensored: Pulling Back the Curtain. True to the expos√© tone of the title, Ellenby describes in livid detail the day she wrestled her panicked son, Zack, by clamping his 50 pound frame tightly between her thighs and locking her feet together. The two spent over half an hour in combat as Ellenby dragged him inch by inch toward the red curtain beyond which the Sesame Street puppet Elmo was performing. Zack’s piercing shrieks alarmed onlookers who screamed at Ellenby to stop, threw an iced drink on her, and spat on her.

When the venue attempted to kick Ellenby and Zack out for causing a disturbance, she told them the ADA (Americans With Disabilities Act) gave Zack the right to reasonable accommodations to access public venues, and she was Zack’s accommodation.

I learned from reading her forthcoming book that Ellenby began her career as an ADA lawyer. She had a dream of fighting the huge battles. I’m picturing her mind set on something like a cross between Spencer Tracy in Inherit the Wind, and Gregory Peck in To Kill a Mockingbird. She went into ADA law starry-eyed about all the great work she would do, but became frustrated when the bulk of her work turned out to be things like getting down on all fours to measure doorways and stalls to see if they were up to code. That didn’t feel important enough to her, so she switched to a boutique adoption firm. Then she became pregnant with Zack, and thought she would take a little time off to give birth but soon be right back in the thick of things at work.

The first half of Autism Uncensored is a brutal description of how angry and bitter Ellenby became at her son, Zack, when he turned out to be autistic. Ellenby feels like giving birth to Zack was some kind of punishment for her sins, and expresses that belief through declarations like, “After weeks of being entombed by numbness, my heart is finally giving way to the realization that I’m being justly punished.”  “Zack’s autism is collateral damage for a life poorly lived. I just never imagined the punishment for my bad deeds would be inflicted on my innocent child, or be so brutal, so permanent.” “I’m chained to this denigrating, unpaid forced labor with no tangible reward for all my sacrifice.” “I will be incarcerated and tied to him for the rest of my life, a prison sentence” “I can’t pretend this is anything but punishment. At its very worst, autism feels like a living, walking, breathing nightmare.”

The book could use a thorough editing for typos and word usage—writing “synchronicity” for “synchrony,” or “bespectacled” for “bespangled,” for example—but I don’t think the last quote of my previous paragraph was a typo. I believe the author fully intended to say “autism feels like…” because she believes that autism is not a word to describe the structure and function of her son’s brain, but rather a punishment inflicted on her. Like many martyr parents, she has co-opted her son’s identity and cast herself in the role of victim. Autism is not a neurotype; autism is what was done to her. And in between sessions with her hair shirt, she makes it clear that she thinks she is better than this: “I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”

Sometimes her concept of autism is as a separate beast, something outside and inhuman: “Autism is angry. The infuriated beast of defiance is rearing its head, snarling, writhing, biting, only I’m not trying to defeat the beast or even subdue it. I need its passion and power. It’s this very passion that fuels the resistance with which I must align myself, harnessing and channeling that live energy.”

I have heard people defend the phrase “combat autism” by saying that they love their child and hate autism. When the average person says they’re fighting autism, it feels bad to me but I try not to say too much because I’d rather win hearts and minds, than be too direct and alienate anyone I might otherwise have influenced. But when Whitney Ellenby was fighting autism, it was very much not a case of “love the child; hate the autism.” When Ellenby writes about fighting autism, she is talking about fighting Zack. 

Ellenby wrote very clearly about hating Zack, and she used the kind of language I’m not used to seeing outside medical books from 40 and 50 years ago. “He’s not even a boy really, but the shell of a boy, an exquisite cutout of a child with no actual stuffing. He is damaged ... deformed ... disgraced. And his disgrace is my own. This is what my glorious womb has produced, a profoundly dysfunctional child.”

The author tells us that she has intentionally chosen to use the present tense when writing her history with Zack as if everything were happening in the moment in order to achieve maximum emotional impact. She succeeded in that aim; her book is harrowing. I felt clobbered reading the first half of Autism Uncensored. After enough clobbering, I just felt numb and empty.

The second half of the book starts when Ellenby’s daughter Cassie is born. Cassie is not autistic, and at first Ellenby loves her more than Zack because she is typical. “Cassie exhibits everything Zack did not, and more. I feel truly appreciated, indispensable, valued. I’m not just smitten but truly grateful to my daughter for allowing me finally to know true reciprocal joy and interdependence. So this is why so many parents describe newborns as transformative, revolutionary and all-encompassing. Now I get it. Now I can’t pretend that I don’t.” Zack clearly sees the overwhelming favoritism going on and in a panic about his own survival he does things to hurt the baby.

Ellenby complains about all the extra work of policing Zack while taking care of Cassie. She wishes she could get rid of Zack and start fresh with Cassie and forget she ever had a child who wasn’t normal. “I cannot see a way out or how will it [sic] ever subside in the face of such obvious, lasting discrepancies between my two children. I’ve never been one to repress my fantasies, the theme of which are now overwhelmingly versions of 'starting over.'” “What if Keith and I could start over with just her and then have just one more typical child? Now that we know it’s reproductively possible, the notion is intoxicating, the vision of Cassie as the older sibling to another adorable healthy baby, rounding out the family to the four I’d originally envisioned, before all hell broke loose.”

Ellenby realizes she’s sharing a horrifying thought and tells the reader “no one who hasn’t walked in my shoes gets to judge me.” She reasons that it’s natural for her to feel this way after everything she has endured from Zack. But around 60% into the book, Ellenby’s affections for her children suffers a sea-change. The catalyst? Cassie starts talking. Now Cassie uses logic to resist doing what Ellenby wants her to do. Cassie treats her mother to streams of insults: “From now until forever, I’m going to be friends with everyone except you!” “And I don’t even like the way you dress! And you try, but you are not even funny!” “And you know what? Daddy is SO much more funner than you! And he’s a better cook, and he’s better at video games, and he looks better in his clothes than you do in yours.”

Ellenby can’t stand it and begins to hate her daughter, opening up room to love her son as she uses the ambiguity of his silence to layer dehumanizing mystical interpretations of autism onto him. “Unbelievably, the scales of enjoyment between my two children are tipping in a direction I had not thought possible.” She begins to really appreciate Zack’s silence. “Zack’s own economy of words works to our mutual advantage—I talk too much, he too little. Somewhere between us lies a normal amount of speech.” From this point on, she always writes about Zack with a stereotypical new age-y praise of his innocence and higher spiritual nature.

Around the same time, she starts noticing that people will be overwhelmingly supportive and helpful when she makes a public announcement about Zack’s autism. People on the train provide an endless supply of tissues and plastic bags when Zack soils himself unexpectedly and Ellenby announces it’s due to autism. Gang members at a water park band up to protect and assist Zack on the giant water slide after she gives an impromptu speech about Zack’s autism on the steps of the water slide. Ellenby wrote in the first half of the book that she was Zack’s accommodation and he “rides” her. By the second half of the book it is becoming clear that she is riding Zack, using his autism for a social payout to herself.

Ellenby describes a turning point at which I sense she first began to realize she could commodify Zack’s autism for money, social status, or both. Ellenby stages another wrestling match with Zack, this one to get him inside a movie theater to see Happy Feet. This time, instead of springing the performance on an unsuspecting and captive audience, Ellenby goes into the theater alone first to announce that she will be dragging Zack in during the previews and that he’s got autism and this is part of his exposure therapy.

The theater-goers silently watched Ellenby drag her son into the theater—kicking, clawing, biting, shrieking—and then, “A few members actually kneel to give me strong hugs; others pointedly ask me for my business card so I can work with their disabled children, cousins, grandchildren. Once again history has been made in the life of my child. Savor it.”

Ellenby ends her book by telling us about her business and all the good it is doing in the world of autism. The book reads like a business card. It’s the kind of book meant to drum up more business and I think it will be highly successful in that regard. And I think that’s a horrible state of affairs.

Ellenby began dragging her son places after she felt Zack was not making enough progress on ABA therapy. She decided mother knows best and began her own program of forcibly dragging him places he didn’t want to go so he could see for himself that it wasn’t so bad once he got there. The author spends a few pages of her book enumerating the flaws of ABA and, for a moment, I agree with her:

“A flat prohibition against certain behaviors wipes out a panoply of ritualistic comforts for an entire population, some of whom may very well depend on them to function at all. And if we suffocate those adaptive behaviors, even when the child is learning, are we not teaching the child to be ashamed of his own natural impulses, telling him his are disfavored or deviant? And would we do the same to typically developing children, or to ourselves as adults?”

“But something even more sinister is going on here: we are undermining Zack’s autonomy and sense of self-worth. ABA protocol is literally robbing Zack of independence and bodily choices, because we are making them for him.” Yet what is Ellenby’s Tackle and Drag Therapy but a super-intense experience for Zack of completely losing his autonomy and bodily choice?

Ellenby felt like a small fish in a big pond as an attorney; making her life about autism makes her feel like a much bigger fish. Again, she co-opts Zack’s identity to fill her ego needs: “I am autism and it is me; I live and breathe it, fully intoxicated: it’s in my marrow. And most unexpectedly, it gives me profound joy and sense of purpose to acknowledge it. It doesn’t matter that I was trained to be an attorney. I’m meant to be something more feral, more hands-on, more intimate and immediate. After a decade spent wandering the wilderness as a little attorney lost, possessing raging zeal with no clearly identifiable group to ignite it, I have come home.”

Ellenby admits she’s not even got the proper training to safely restrain a child. With her attorney instinct, she makes sure to tell people not to do what she did. Yet she uses such scientific phrasing when she describes her “experiments” and writes about her perception of the success in such glowing terms many vulnerable parents will do exactly what she describes, as closely as possible to the way Ellenby did with Zack in search of some magic outcome.

And for all Ellenby’s criticism of ABA in her book, when I Googled her business I found that it’s based on an ABA model. And in her Washington Post article, Ellenby admits that what she is doing with her Tackle and Drag therapy is exactly what ABA therapists do if the 40-hour work week of ABA therapy isn’t making a dent in a child’s behavior. She told Zack’s doctor about the Elmo show, after the fact, and he explained that: “as a last resort, in a controlled way and only after years of therapy, a licensed behavioral clinician might have physically restrained Zack to force him to confront his fears, had he not responded to more gradual methods.”

As Sid Ziff once quipped, this is not a book to be lightly thrown aside; it should be thrown with great force. But it is in the midst of being published and the publisher has defended the author, using some particularly nasty rhetoric against Autistic people who don’t like the book. It will be published.

Ellenby has said no one should speak badly about her book unless they’d read every word. Well, I’ve done that now and I feel soiled and deflated. Demanding that Autistics who are upset by one bite of her book must go on to consume the whole thing before being permitted to have an opinion is the demand of a bully who knows they are requiring vulnerable people to traumatize themselves with her words.

While Ellenby has, perhaps unwittingly, exposed a lot of the ugliness and unsuitability of ABA, she embraces the behavioral paradigm still and enacts the very worst versions of it. Autism Uncensored is a traumatic read and should be resisted as much as possible. I’ve read it for you and saved you the trouble and trauma. Instead of this revolting mess, I suggest you read the following:

Respectfully Connected


"Authors of this blog come from a wide range of backgrounds and between them have an enormous amount of parenting experience. They all share a desire to parent in a way that both models and facilitates respect and connection, and that values all kinds of diversity. The authors of this blog also share the experience of being part of neurodivergent families."

"This blog exists to share the authors stories, with the hope they will empower and encourage other parents on their journey with the knowledge that there is a gentler, more compassionate way of raising autistic children than much of society tells us, and that close attached relationships are very possible."

We Are Like Your Child


“We Are Like Your Child [is] a collaboration of Autistic (& occasionally, other disabled) adults. We discuss our difficulties & how we work with or around them from a neurodiversity & social model of disability perspective.”

WALYC was organized in response to the many parents who refuse to listen to what Autistic adults have to say about the lived experience of autism, telling us that we can’t possibly have any useful insight or advice because we’re “not like their child.” But you can’t compare an adult to a child and the members of WALYC often discuss challenges many people’s children of all ages face, along with strategies for circumventing or overcoming those challenges.

The Thinking Person’s Guide to Autism

Oh, wait, that’s where you are right now, reading this. Well keep reading TPGA! There is so much collected wisdom here from Autistics, parents, therapists, and more that it would take a shelf of textbooks to hold it all (and the valuable content continues to grow.)

These three sites alone will keep you very busy reading and learning things that will actually help you and your child. Reject Ellenby’s Tackle and Drag therapy and anything that comes from Dr. Lovaas and his ABA practices. Boycott Autism Uncensored and tell everyone why Autistics deserve better.

Saturday, March 10, 2018

How to Use Visual Schedules to Prevent Accidental Gaslighting


(Content note: This post mentions ABA briefly, and gives a detailed example of an autistic child being exposed to gaslighting.)

I’m an autistic parent to an autistic child. After I tweeted a bit about my take on autistic parenting, that made me think that I want to explain one of the benefits of using visual supports for clarifying life and create predictability.

Visual supports like picture schedules can be used in a number of ways. Sometimes people use them in ABA settings to visualize what reward the child will receive, and I want to be clear that I don’t do that. I don’t do any kind of ABA or therapy that attempts to make my kid appear allistic (non-autistic).

In my home, we use pictures and visual support to make life easier for us, as the autistic people we are. Nowadays, both my kid and I are mostly verbal but visual support is still a great way to communicate for us, for a number of reasons. One of the benefits of pictures, words written down, and color-coding is that this is the kind of information that lingers, meaning even for people like us who don’t always remember what we were thinking about a second ago (hey ADHD), the information is more accessible. Another benefit is that clear, visualized planning can prevent (unintentional) gaslighting and misunderstandings.

Now, some of you may think that since gaslighting is a horrible thing, it’s not something that happens accidentally. I wish that were true, because yes, making someone doubt themselves and their experience of reality is a truly horrible thing to do. In my experience though, adults sometimes do gaslight kids without even realizing it. Especially autistic kids. Especially if parents operate with an allistic perspective. It can go something like this:

An autistic child is being told by a parent that “tomorrow, we’re going to the beach if the weather is good.” If the weather is bad they will stay at home and play computer games. In the mind of the parent, this plan means that they will go to the beach if it’s warm and sunny.

This condition doesn’t have to be a problem, but let’s say that the parent doesn’t tell the kid about what they mean by “good weather.” Let’s say that the kid doesn’t even like sunshine because the heat is sensory hell, but loves playing on the beach on a cloudy day. The next day when they wake up, it’s cloudy and not that warm. The kid is happy, because the weather is perfect for the beach. The parent however, doesn’t want to go to the beach because it isn’t warm enough. Maybe they will disagree and fight about it. Maybe, the parent will say something like “But I told you we’re only going if the weather is nice! Why don’t you ever listen?”

A lot of people will probably agree with me that this is a misunderstanding. However, if you’re an autistic kid your sensory experiences, your interpretations of the world, and what people say are likely to always be questioned, erased, and invalidated—and then you are being blamed for it. It probably doesn’t happen only once a year, it might happen every day. Because that’s life for a lot of autistic people in an allistic-run world.

For kids, this is even worse than for adults because kids’ interpretations are often considered invalid just for coming from a kid. Having your interpretations of the world constantly invalidated day after day, year after year, is a kind of gaslighting. It might not be intentional but it’s more harmful than just misunderstandings between equals.

So how can visual supports help autistic people in these situations?

[image: Black and white pictures of a sun followed by an arrow pointing at
a symbol for beach and a picture of clouds followed by an arrow pointing at
the symbol of computer games. Images from Sclera symbols.]
Let’s say that the parent and kid in our example had made a picture schedule about this. For some people, it becomes much easier to understand an autistic way of thinking when you communicate using pictures, meaning that just putting what you want to say in pictures might close a communication gap between the parent and the kid.

But even if closing that gap doesn’t happen automatically, when the parent and kid created the schedule together, the question of what “good weather” is would hopefully had come up. Many of the parents I discuss visual supports with mention this idea, that putting your thoughts into pictures makes it more necessary to be precise and see possible interpretations beyond your own. When visualizing plans together, it can become easier to understand each other.

Hopefully, by making visualizations and realizing that you have different sensory experiences about sun and heat and therefore interpret “good weather” differently, you avoid misunderstandings and gaslighting.

[image: Black and white pictures of a sun followed by an arrow pointing
 at a symbol for computer games and clouds followed by an arrow pointing
at the symbol beach. Images from Sclera symbols.]
Now, would it be enough to visualize during what weather a visit to the beach could happen? No. If a kid experiences sensory hell from sunshine and heat, the issue won’t be solved just because there’s predictability from a picture schedule. Obviously the parent has to change their idea of what kind of weather that is beach appropriate to not put their kid in sensory hell.

Creating predictability by using visual support isn’t some kind of magic, it’s only one part of parenting an autistic kid in a respectful way.

Friday, March 9, 2018

At Home in Ourselves: A Mindful Acceptance of My Autistic Son

Star jump
Photo © Stuart Anthony | Flickr/Creative Commons
[Image: Two backlit people attempting to jump over a horizon-adjacent sun.]
Leslie J. Davis
"When I practice breathing in and I say, 'I have arrived,' that is an achievement. Now I am fully present, one hundred percent alive. The present moment has become my true home. When I breathe out I say, 'I am home.' If you do not feel you are home, you will continue to run. And you will continue to be afraid. But if you feel you are already home, then you do not need to run anymore. This is the secret of the practice. When we live in the present moment, it is possible to live in true happiness." –Thich Nhat Hanh, "No Death, No Fear: Comforting Wisdom for Life"
Every Monday night I sit with my meditation group and practice breathing in and out in an attempt to calm my racing thoughts, to learn how my mind works, to remember that I have a body. I sit on a brown zafu cushion and breathe in and out, saying to myself, "I have arrived. I am home." On the in breath: Arrived. On the out breath: Home.

This practice of breathing slowly in and out allows me to slow down, so I can stop running. So I can stop being afraid. So I can stop worrying. Often the fear and the worries rush back in after the meditation session is over, but doing the sitting helps me bring an essence of calm and a sense of being "home" into my daily life when I'm not on the cushion.

Having this capacity to slow down so I can be at home in myself has allowed me to trust that my autistic teen son is also at home in himself. It allows me the space to observe him closely and notice him for who he is, instead of trying to change him to be someone I want him to be, expect him to be, or that society expects him to be.

My autistic son has a rich and vivid inner life. I see him watch, listen, and notice. He uses spoken language and communicates well, yet I know there is much that he isn't sharing because he can't, or chooses not to. I know there are oceans inside of him that he isn't revealing to anyone. Because of my meditation practice and spending time on the cushion, I'm able to watch him, listen to him, and notice.

Recently I had a coffee date with a dear friend and we had heart-to-heart on an important experience in my life. Afterwards, all these thoughts ran through my mind: There's so much more I didn't have a chance to say! There's so much more I could say but am choosing not to say. There's so much more to this that I don't yet understand. There are experiences in my life that this relates to but we didn't have time to talk about it. I don't want to tell her everything; I want to keep some of it to myself.

There is so much going on inside of a person that we don't know about. On all the levels: spiritual, emotional, intellectual, hormonal, ancestral, etc. Our inner lives are rich with detail and feelings—on any given day there is so much we don't share with other human beings. Why would we non-autistic people think this is any different for an autistic person?

When my son was a young child his imagination astonished me with the depth and detail of his creations and made-up worlds. I used to try to get him to write it out, draw it, speak about it, until I realized, Who am I to force him to open those places up to me? When he wanted to talk to me about his made-up worlds, he would. When he decided to draw maps of his world, he would draw maps for days, and I would watch, marvel at his concentration and creativity, gently asking a question or two here and there. Sometimes he was excited to talk about it and other times, not. When I shifted my perspective I could accept that when he's in his own world in his mind, he is safe, he is home.

His present moment is his true home.

As a mom, breathing and staying calm aided me in seeing him for who he truly was: a boy completely at home in his own world—comfortable and calm and free--unless I was the one pressuring him into doing things I "thought" would help him, doing things my societal conditioning told me was right, or was expected of him. When social norms whispered in my ear—or more accurately, shouted in my ear—they came via comments and suggestions from non-autistic people, doctors, therapists, teachers, or the voices in my own head based on my own upbringing in a neurotypical society.

When I listened to these outside voices, I'd yell at my son, insulting his individuality, trying to pressure him into a mold, and attempting to define who he was in a way other people would understand. Putting others first and ourselves, second. But when I stayed mindfully aware of his essence, I saw that he was happy and free. That he was smart and expressive and curious. There was no need for me to intrude.

But intrude I did, for many years. Before having the conditions to set my mind at rest and put my trust in him, before an autism diagnosis, before my meditation practice steadied me, before I let go of outside expectations and trusted my intuition, I intruded in ways I'm not proud of. For years I was a messy conglomeration of views, theories, approaches and therapies. I swung back and forth between being a toxic, controlling, fear-driven, socially-influenced mom, and being a steady, confident, calm, trusting advocate for my son whose actions from a place of love. Both were happening at the same time. It caused a lot of suffering in our home—mostly for our son.

One of my son's occupational therapists used to ask, "What Would Love Do?" and I would cry every time she said it, because my desire to move from a place of love was so deep—and at the same time I was clutched in the grip of a neurotypical world's expectations, and operating through the lens of mainstream expectations and ideologies.

Eventually, our family embraced a non-conventional lifestyle in regards to my son's education and care, and chose to pursue our own path of support for him through homeschooling, private therapies, and mindfulness practices. Letting go of conventional views set us free to be at home in ourselves.

"I am large, I contain multitudes." -Walt Whitman

When I practice meditation and remember to return home to myself in the present moment, I know that my autistic son contains multitudes—oceans of thoughts, feelings, sensations, awareness and insights that he doesn't share with me. And I accept that he has the right to be at home in himself and be the owner of his own experience, and of his own happiness.

Mindful Parenting Resources:

Thursday, March 8, 2018

The Stories We Don’t Tell: My Mom On Raising An Autistic Child And Why She’ll Never Write About Me

Sarah Kurchak and her Mother Jane Kurchak
 [image: Cheerfully geeky selfie of the author, a white Canadian woman wearing
glasses and also goggles on top of her head; and her mother, a white woman
also wearing glasses plus a pinstriped blue collared shirt, tie, and white jacket.]

Sarah Kurchak

When I’m feeling particularly frustrated with my career, I offer to ghostwrite a memoir for my mom. It’s a slightly bitter, semi-serious joke. I’m mostly taking a shot at the fact that the memoirs that non-autistic parents write about raising their autistic children have a much better shot at getting published and selling than anything that I, as an autistic person, could ever hope to write about autism. But there’s also a little part of me that just wants that payday. (I can’t extend this offer to my dad, because he’s a fellow autist and no one seems particularly interested in hearing what autistic parents have to say about these things, either. Or acknowledging that autistic parents even exist.)

My mom is a funny person, and usually quite indulgent when it comes to my humor, but she always shuts this joke down pretty quickly. Even in jest, her answer is clear. This isn’t her story to tell.

As I’ve watched the autistic community respond to the latest offerings from this wretched subgenre and wondered how I could contribute to the conversation at a time where I don’t feel intellectually or emotionally equipped to properly tackle the issue as a writer or an advocate, I kept coming back to this point. So I asked my mom to read two of the most recent and high-profile examples of the Autism Parent memoir, Judith Newman’s To Siri With Love, and the excerpt from Whitney Ellenby’s forthcoming Autism Uncensored that was recently published in The Washington Post. And then I asked her if I could interview her about them. And about us.

The following has been lightly edited for length and clarity. And I’m not so sure it helped the latter. I’m not convinced that I perfectly articulated my points, but it’s the best that I can do right now and I’m hoping you can get the general idea from what I have said.

People argue that no one represents the real autism. This, in its somewhat rambling, possibly overly earnest, and well-meaning glory, is also the real autism.

Sarah Kurchak: You read To Siri With Love recently. Can you give me your general impression of that book?

Jane Kurchak: OK, what I went through while reading was a range of emotions. Mostly it was anger, and then sadness. But, I guess, ultimately I felt that Gus was the punchline and he wasn’t in on the joke. And that bothered me. And I kept thinking…she’s his mother, and that individual that should be the most secure person, place, everything on earth was [instead] doing this end run behind him and telling the whole world about his bathroom issues. And it wasn’t her story to tell.

I always put you in the kid’s position. How would you feel if that were going on? How would you feel? How is Gus going to feel in ten years when maybe the reality of that book hits him? It may or may not, but it still was never her story to tell.

Another thing that bothered me were the number of people and celebrities that were gushing over this book. I kept thinking…why is nobody saying to her “Maybe you shouldn’t be telling Gus’s toilet secrets?” I don’t know. So that’s what Siri did to me. And, in that case…I never, ever questioned that she loved Gus. I just don’t think that she went about all of this the right way. And who am I to judge? But she put the book out there. It’s for all of us to read. We’re going to have opinions. And I just don’t think that was her story to tell.

Which brings us to the article in The Washington Post that we read last week, which was called “Bystanders were horrified. But my son has autism and I was desperate.” Can you give me your general impressions on that?

That made me cry. As upset as I was with the whole Siri book, that pales by comparison to that article I read. That’s child abuse. It is. And, again, I put you in that kid’s position. And never…and I’m not saying that I’m parent of the year, or any of those things. I stumbled through this. I didn’t know. But I cannot, for the life of me, ever ever imagine thinking that was a good idea. To do it wasn’t a good idea. And to write about it is as repugnant as the action.

I was thinking…what the eff is that lady thinking? “I was desperate? People were watching me?” You took him into the damned situation in the first place! This isn’t about her. It shouldn’t be about her. She wanted him to see Elmo.

What I noticed in that piece, even more than in Judith Newman’s observations, was that she kept blaming situations on her child’s autism that were actually problems involving people’s perception of her.

This is all about her. This is all about her.

I try to have sympathy. Not just as a human, but as a writer. Because I think we do have somewhat different boundaries. And yet…I am also someone who has significantly benefited from other people protecting my boundaries so that I could get to the point where I could decide to reveal perhaps too much in certain situations. But even though I am an open book in a lot of ways, there’s a lot of stuff that people don’t know.

And there’s a lot of stuff that is probably going to get weirdly meta in this conversation, where we’re going to talk around what we don’t talk about in my life, so that it can’t be Google-able and people can’t attach things that still have a lot of stigma around them to me, so that I can continue to survive and function as a person in the world and as a writer. As small as my profile is, it’s still a public profile. And none of that would be possible if you and dad had ever been more public about my life.

And we’ve talked about this before. It never occurred to me to make any of your stuff public. We talked about your sleep thing. We all knew about your sleep thing and I joked about that. “Sarah didn’t sleep! That’s why she’s an only child.” There were jokes like that.

There are other situations that we will never discuss. But they were never insurmountable and I can tell you that when some of those things were happening, I would simply say “She’s not going to be doing this at ten. She’s not going to be doing this at sixteen.” It was in the moment.

Do you remember…of course you remember wearing the Smurf hat to Pupo’s [Welland, Ontario’s most beloved grocery store].

I also remember wearing the Smurf hat in grade nine.

I do, too. But that was a bit of a dare, and you go for it. But you loved that hat. And then remember we had to convert it into a Smurfette hat, and you had those big yellow yarn braids hanging down? I loved that you wanted to put that on your head and wear it to the grocery store. You had so much fun doing that, why would I not have gone along with that?

And I do want to be clear for anyone who is going to read this and think this is just an example of someone who is quirky and not “really” autistic: This is an example that we can talk about freely. There are other ones that are way more private that we’re not going to get into. But your choices in all of these situations came from the same compassion. They all came from the same logic. And ultimately ended up benefitting me in the same way, too.

Yes, I can see where you’re going. Yes.

In this conversation, we’re talking about To Siri With Love as a book, because we’ve both read it. We have only read Whitney Ellenby’s article that was published in The Washington Post. We haven’t read Autism Uncensored, her forthcoming book, as a whole. And this is, in part, because you have asked me not to. So can we get into why you asked me not to read this book?

Your level of empathy can be debilitating. You’ve always been like this. Always. And I see your daily struggles. I see you try to function in a pull-up-your-bootsraps neurotypical world. And I know if you read this book, it will crush you. It will take a bigger toll on you, by far, than Siri did. And, as your mother, my concern is your ability to continue functioning carrying that level of upset. So it’s a selfish motive because I don’t want you to hurt and I know that what we’ve read is only a small part of what’s gone on. I don’t want you to read it.

If you were a writer, and you decided to write about me and my childhood, how do you think you would approach it versus what you’ve seen from these parent memoirs?

I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else. And if I were to write, it would be about the lessons that I’ve learned from you. Nothing that you’ve learned from me, but what I’ve learned from you. Only from my perspective. I would never, ever expose, without your permission, any of the incidences that have happened. But every one of those was for me to learn more than it was for you to learn.

So I guess it’s that. Watch your child and learn from them. Take you cues from your child. Just because I’m your parent doesn’t make me right. I would write about how you enrich my life. And people might read this and think “You have to say that. You’re a mother.” They can think what they want. My reality is that my life is a better life because of you. I’m a far more tolerant person. I’m a far more understanding person because of the lessons that I’ve learned from you. Not just because you’re autistic but because you’re autistic and the way you view things and the way you approach things has taught me a different way of viewing and approaching. So that’s what I would want people to know.

So I think we’ve already touched on this a bit but I’m going to try to get a bit more explicit because, for me, this isn’t just an issue of what we write about autism. What concerns me is that this gets to the heart of the stories that we tell about autism in daily life. And when I approach these books…I’ll admit, part of it is professional jealousy, because I want to have at least a fraction of the platform that these people have. I want to be able to write about my autistic life or write autistic characters that can make the next generation feel less of whatever the hell it was that I felt growing up.

But it goes beyond that, too, because I am someone who has benefitted—and, I would argue, only survived and reached this point—because of the stories that nobody told about me. Because I had parents who didn’t exploit me, didn’t film my meltdowns, didn’t tell people about, say, how much I lost my shit at the dentist every time I went, didn’t talk about my toilet training, my utter attachment to you to the point where you couldn’t really go anywhere alone without me freaking out. And these are all things that, again, I want to point out to anyone who is reading this, I am glossing over because this is as much detail as I feel safe revealing under my byline now. The only reason that I feel that anyone can come at me and say “You’re not autistic enough to count” or “You’re not the kind of child that they’re talking about here” is because, when I was that kind of child, no one told on me. When that happened, you would take me out of the situation. No one saw it. And then you wouldn’t talk about it later.

And it would never have occurred to me to talk about it later.

You also, I want to point out, suffered because of that. For all of the talk about autistic kids not being aware of their surroundings, I was hyper aware of the level of criticism that you and dad faced, often when I was around, for ostensibly coddling me, or overprotecting, or spoiling me. Obviously it never occurred to you to say anything, but it could have alleviated your burden if you had told people why you were doing it. And you never did.

No. I never really thought of that before. It didn’t occur to me.

We knew what worked for you. If we were to go into a situation with you, we knew what worked and what didn’t. So if we had to remove ourselves from that situation and hang out somewhere else, what was the problem?

I guess there’s a price that you pay…and people judge. We all judge. But we’re so…who wrote the damned book? Who wrote the book on how society has to function? What’s normal? We can apply it to your temperature, but we certainly don’t need to apply that to behaviour.

I think people assumed that I was a nervous, clingy child because I wasn’t pushed enough, when the reality was that you guys were like that because I was a nervous and clingy child and any steps I’ve made in life are because I have a secure home base. A safe place where I’m never going to be exposed or judged or unduly pushed into something.

And that’s what I feel like every single parental home should be, regardless of if you’re 6 or 36. You should be able to come here, to decompress, and the world doesn’t get to peek in.

My main point that I wanted to discuss here is that I’ve been protected by what you and dad didn’t share, but I also want to say that I think I was really nurtured by the fact that you didn’t bring any outside measurements to my growth and development. Ever. You always always wanted to work on my terms and do what actually made me succeed or survive, or grow. I bring up that shoe story that was in Refinery29 to parents a lot, because I think it’s a great example of how practical you were. The modifications didn’t help. They made me sad, because they ruined my shoes. So you were like “That’s not the solution.”

Unfortunately, because of the narrative that we have around autism now, so many parents are so scared of screwing up and so scared of having these autistic children who won’t be “normal” in the future that they just keep hammering away at one thing, even if it’s not working, even if it’s harming their child, like it’s the only answer.

So again we get back to society’s expectations is driving these parents to make these ridiculous decisions. It’s all of these benchmarks. Why are those the rules?

We should probably wrap this up, but one last thing that I want to say is that I am not just concerned about what these books reveal about their subjects and how that harms them, but I’m also dubious about the purpose of them at all. These are books that are intended to expose the “real” autism or shed a light on the plight and what I wonder is who this level of awareness serves. It seems to me that, as long as the actual issues that they’re talking about have stigma attached to them, we’re not helping autistic people by talking about them in this way. We’re helping carers, because people will sympathize with them. If using a diaper is still stigmatized, then talking about an autistic person who uses a diaper is only going to make people sympathize with the person who might have to help them with it, as opposed to helping people accept that some people just happen to use diapers.

Until the actual autistic needs and behaviors are accepted, I don’t see any purpose to this kind of awareness beyond narratives that peddle in tragedy and the lionization of non-autistic people.

That’s it exactly. I don’t know a catchy phrase for it. But they put it out there, you see how the public eats it up and it’s permission to be the victim. So that’s why it’s going to sell. And I bet there are a lot of…I have no idea what the statistics would be, but there’s no way in the world that Dad and I are the only two who let it play out this way. There have to be a ton of people like this, but those stories just aren’t as exciting.

I’ve become associated with a lot of great parents through Twitter, and I know they’re out there. Unfortunately, part of what makes them great parents is that they don’t dominate the conversation, so you don’t see them.

So you’re going to write a story. You know, when you write that story, you’re going to expose yourself to more criticism.


And I’m not going to lie. I think about that. And I wish it wouldn’t happen. But I have to say, in this case, you’ve taken it upon yourself to help someone that can’t really speak for themselves and I’m so fucking proud.

It’s not that they can’t speak or communicate, it’s just that I am lucky enough to have slipped into a platform that…you know, I might have a higher profile career if I weren’t autistic, but it’s still more than a lot of great autistic writers and bloggers are afforded. And I’m just…I don’t know…what is any of this for if the next Sarah has to live all of this the exact same way?

OK. And I just want you to know that I’m proud.

I’m wondering if it’s going to seem incredibly self-serving if we end on my mommy being proud of me.

Well, you can decide whether you want to put that in or not. But I’m not just throwing that in. I am.


Originally published at Medium

Monday, March 5, 2018

Book Review: The Love Letters of Abelard and Lily

[Image: Book cover: blue background
with rows of scribbled-out red hearts
interspersed with casual white lettering
reading "The Love Letters of Abelard
and Lily | Laura Creedle"] 
Kathryn Hedges

The greatest strengths of the YA book The Love Letters of Abelard and Lily by Laura Creedle were the realistic portrayals of two very different neurodivergent teens, and their gentle romance. It was wonderful for an autistic character (Abelard) to break so many negative stereotypes and for a non-autistic character (Lily) to accept his differences so enthusiastically. They are an adorable couple with great promise (except for conflicts over her tardiness and his need for promptness). I also empathized with Lily’s struggles with unsympathetic teachers and her own feelings of failure. However, I was angry and disappointed by the tragically ableist conclusion. (Spoilers ahead, in case it matters.)

I expected this to be a story about two neurodivergent characters who succeed while leveraging the strengths of their neurodivergences and working around their weaknesses, perhaps teaming up with complementary skills. Abelard’s story arc meets this expectation: he’s a robotics champion with disability accommodations whose parents send him to an elite college for Autistic geniuses. Lily, however, doesn’t get to overcome her obstacles of internalized ableism and lack of executive function scaffolding. Her unsupportive family and sadistic teachers trigger shame spirals about her executive dysfunction, worsening its effects, even though she has sympathetic allies outside the home suggesting the problem isn’t really her. Lily’s story arc is rejecting her "childish" impulses to escape her abusers and making the "mature, reasoned" choice to undergo experimental surgery to cure her ADHD and ensure a bright future where her genius is not frittered away by a lack of focus. Not only is this ableist, it’s bad writing.

The neurosurgeon minimized the potential risk and oversold the benefits, which I assumed was a sales pitch meant to entrap Lily. However, the author seemed to present it at face value. The only alternative portrayed was to leave town with Abelard in a realistically-teenage unrealistic plan. Just because this is a bad plan doesn’t mean surgery is the only alternative. The author completely ignored less-dramatic scenarios where Lily could have a better support system and less blame over her neurotype, such as staying with her best friend’s family. She wasn’t even given enough time to see if her new accommodations would make a difference at school because the needs of the plot couldn't wait.

Apparently, the author was setting Lily up as the person whose ADHD is so severe they need a cure, the equivalent of the "tragic" Autistics that autism curebies and Temple Grandin talk about. This is a very insidious case of “neurodiversity lite,” because the author's target audience includes teens with ADHD facing similar struggles with family, schoolwork, and expectations. Promoting a message of “you will be a failure because you need a surgery that doesn’t exist in the real world” is cruel and irresponsible. Likewise, those teens' school counselors and potential employers don’t need that message either because it can shape expectations—just as damage has been done by the false “Autistics lack empathy” trope. As Abelard has accommodations and an entire college designed for his neurotype, it isn’t just that the author is unaware of the social model of disability. She’s decided to throw it under the bus.

Whether the author has internalized ableism about her own ADHD or is just a big fan of Elizabeth Moon’s book Speed of Dark, I don’t know, but I don’t want to promote her underlying curebie message by recommending this book.

Saturday, March 3, 2018

The Toxicity of "Autism Parent" Memoirs

An example of a parent modeling language on a symbol-to-speech device
[image: AAC device screen with black block text reading "love you"]
Shannon Rosa
"When others don't understand our [autistic] experiences and don't understand how our actions are meaningful responses to them, they may think our actions don't make sense, and try to control them in ways that are harmful to us." -Elizabeth Bartmess
I think it should be OK to write about our autistic kids. I do. Because I think other parents, especially those who aren't autistic themselves or who are new to autism, need parent role models who do their best to understand and love their autistic kids, and be the parents those kids need them to be. These role models are needed because media messages and social attitudes about autism and autistic people are consistently fear-ridden and awful, so parents who have never heard anything about autism besides negativity need guidance for accepting who their kids are, so they can avoid blaming their kids for who they aren't. Those parents also need permission to give mainstream social expectations a flying middle finger.

I also think all parents, whether their children share their genes or not, obsess about how alike and how different their children are from them. And some of us want to write about that. So I think it's OK for other people to know that my son's physical intuition and grace astound me, as a naturally clumsy person. I think it’s OK that the world knows my son’s memory and visual navigation skills make my jaw drop, as a forgetful and easily confused person. I think it’s OK, as he matures, to be amazed that my little boy is now a man with a beard and broad shoulders. I also think it's important for the world to know how much I love him, how hard I try to understand what his autistic experience means he needs from me and society.

But most autism parenting stories are not positive, or about doing our best to understand what our autistic kids need and deserve. In recent "autism parent" memoirs like Judith Newman's To Siri With Love and Whitney Ellenby's Autism Uncensored, the authors hang their kids out to dry for being autistic and having intensely legitimate autistic needs, while centering the parent-narrators as victims of that disembodied demon, "autism." That these stories keep getting green-lit is both an embarrassment and a tragedy.

I have to ask these parents: Don't they understand that if they aren't on their autistic kids' sides, it's likely that those kids will spend their entire childhood ENTIRELY WITHOUT SAFE PEOPLE OR SPACES? That if their parents treat them as broken and use traumatizing approaches to "fix" them, then they are they ones who are actually breaking them? That until and unless those kids connect with the wider autistic community, they will have only ever received negative or conditional messages about their self-worth, and that research indicates this kind of life-long bullying contributes to the elevated autistic rates of health problems, mental illness, and suicide?
Unfortunately, I understand why so many parents don't think twice about exploiting their own kids' trauma: We live in a society that not only fears autism and disability, but in which even those considered liberal thought leaders don't think twice about reinforcing dehumanizing stereotypes about autistic people. Because of all those negative messages and stories about autism, parents believe their autistic children must be forced to act and feel like non-autistic people, even when their children are obviously miserable. So it's heartbreaking and horrifying but not surprising when parents feel like they must make the destructive choice to prioritize social expectations over their own child's well being.

I also think parents simply don't understand how contagious, dangerous, and self-reinforcing these negative parenting messages are. And it's not as simple as "If you don't respect and champion your autistic child, who will?" If parents only hear that autism ruins lives and that their kids are burdens, it makes those parents see themselves as victims—a message that is constantly reinforced in the media due to a complete and utter lack of balance—to the extent that parents who murder their autistic and disabled kids are, mind-numbingly, still too-often considered to be victims.

This has to stop. And the first step is to stop publishing toxic, hate-enabling parent memoirs like To Siri With Love and Autism Uncensored. The second is for disability organizations and prominent autism parents like Ron Suskind (who endorsed both books) to stop promoting parent accounts that encourage families, schools, and agencies to torture our community's kids:
What these parents should be doing is trying to make the world a better place for our kids. While I don’t expect a parent memoir or a Today Show story to change the world, I DO expect people of good intent to at least try to not make the world a worse place for my son and his autistic kinfolk. I want to see more stories about parents doing everything they can to understand what their kids need, so they can lead lives that are easier for their kids as well as for themselves.

This approach doesn't have conflict with the usual excuse for those wrecking-ball parent memoirs, which is that "parents need to be honest." I think we can talk about what's going on in our lives without blaming our kids, or "autism." I understand, deeply, how parents of autistic kids can feel lonely and lost. I understand that parents want, and should get, guidance, company, community, and empathy. I understand that sometimes we parents can feel damned if we do/damned if we don't talk about our own needs. As I mused recently:
"I think a lot of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we do not and cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space or help without people assuming our kids are the problem, or feeling like we're going for a pity grab. Which, that's all rooted in society's shitty shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult for us."
Parents need to understand that feeling lonely and lost is usually due to a lack of autism-friendly social fabric and services and parent education, and that that is not the fault of one's autistic child, or, again, of "autism." So while I understand to the center of my marrow that parents of autistic kids don't have enough supports either, I am never going to make excuses for parents like Jill Escher who publicly belittle and disrespect their autistic children. Instead, I am a roaring Mama Bear when it comes to demanding that other people treat my autistic son and his people with respect, and on their terms, as long as they're not inconveniencing anyone else.

Another re-occuring theme of these accounts is the parents declaring how much they love their autistic kids. What those parents don't seem to understand is that writing about an autistic child with love but without understanding is still explosively damaging. Consider the video and testimony of Kate Swenson of Finding Cooper's Voice, as featured on The Today Show:
"I had to grieve the life I pictured before I could accept the life that was given to me. My hope for you is that once you have a diagnosed child, and you’ve made it through, I want you make it your mission to be that person for someone else. Say it sucks. Say you hate autism. Say you feel robbed and slighted. Say it is hard having a child with an unknown future. These are the facts that they want to hear. They need to hear them. Don’t sugarcoat it. Don’t lie. Let them cry and be angry. Sit with them in the dark for a while. Listen to their angry, confused, lost, heartbroken words."
And that is the state of autism-parent-as-victim enabling in our society: these kinds of "I love my kid but I hate autism" accounts keep getting propelled, twenty-five years after autistic writer Jim Sinclair addressed those exact feelings in the landmark essay Don't Mourn For Us:
'Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.'
Parents need to hear, constantly and from multiple sources, that there are things you get to share publicly, and things you don’t. You don't get to tell the world why you think your kid sucks. You don't get to tell the world about things you wouldn't want other people writing about you without permission, like your toileting habits or sexual experiences. This is especially true for people like dependent autistic children who don’t have any recourse for defending themselves—or suing for libel. Parents need to be taught that their kids deserve boundaries and privacies and basic respect. And they need to hear this from other parents as well as from autistic people and other community members.

Consider autistic writer Ann Memmott's caution to parents of autistic kids who argue that they have "a right to say how it feels":
“Will they go to a school, to find that the more able readers have read all about their toileting habits, and use that information to bully them?  Will they go to start a job, in years to come, and find their employer has Googled their name and is now reading what Dad said about how this person destroyed their lives?  Yes, you can't imagine that your child will ever be in work.  People couldn't believe I was going to work, either.” 
Parents shouldn’t write or publish publicly available accounts about their kids that they wouldn’t want those kids to read. Parents should also presume competence about those kids' ability to read or understand what the parents say, however those kids best access information. My son doesn’t read books like To Siri With Love or Autism Uncensored, but he was featured in the book NeuroTribes, so I got the audiobook version, and we listened to the parts about him together (I skipped some of the sections about autism eugenics and abuse; Mama Bear, again).

That’s the thing about presuming competence, about treating our autistic kids with basic human decency: It’s not about “he probably won’t get this” but rather “what if she gets this?” and erring on the side of that caution. Plus, our autistic kids are known for rarely forgetting anything: My son still asks to see couples who divorced when he was a youngling, for instance. If you really are at a loss as to how your kid’s brain works, then maybe always proceed with caution and thoughtfulness instead of treating your kid like comedy roast fodder. But in To Siri, in Autism Uncensored, these boundaries don’t exist.

This lack of respect or boundaries explains a common tendency by to the authors of these parent memoirs: when they start receiving criticism about exploiting and dehumanizing their own kids, they self-righteously claim that autistic people who can call out parents' misbehavior and fallacies just don't understand the problems of "real" autistic people like the authors' kids. What this defensiveness prevents parents from understanding is that autistic people tend to be on their kids' sides:
Now, it is never helpful to tell people that their feelings are wrong. But the reason parents of autistic kids feel entitled tell the world how much they think autism parenting sucks is, again, based on society-wide fearing, loathing, and misunderstanding about autism—which these memoirs are reinforcing, not battling. What if, instead, publishers understood that parents need autism-positive parent resources? What if, instead, influential parents of autistic kids started working towards a society that welcomed people of all abilities, with the goal that families and people who need extra supports can easily access them?

I am not alone in being out of patience with authors like Newman and Whitby, people who are in a position to make their autistic kids' lives better and don’t. Anyone who knows a damn thing about autism knows that, by default, autistic lives are always hard(er than they have to be), and should recognize that these parents are making matters worse. This is why reactions from the autistic and autistic-aligned community to both Newman's book and Ellenby's recent Washington Post article promoting her book are deservedly critical:
Even though I'm pissed (and tired of being pissed) about the never-ending publication of negative autism parenting memoirs, I also hold out hope that people (and publishers) can change for the better. But for that to happen, we need more people to stand up and tell the world that exploiting your autistic child for "honesty" and profit is unacceptable, and that autistic people and their families deserve better than the constant barrage of misery and pain the publishing industry assumes to be our lot.

Friday, March 2, 2018

What Good Representation of Autistic Characters Looks Like, Part III: Setting, Plot, and Character Growth (Plus Some Bonus Goodies)

Elizabeth Bartmess

This is a three-part series. Part I explores autistic interiority and neurology. Part II explores Diversity in Autistic Characteristics and Demographics.

In Part I of this series, I talked about how good representation of autistic characters shows interiority—characters' inner experiences and reasons for doing things—and how various aspects of autistic neurology affect our experiences, particularly sensory differences, language and speech differences, social skills and abilities, and our ability to strongly enjoy specific interests. I also briefly mentioned executive function, the usefulness of routines and structures, motor difficulties, and a few other common differences, plus some common co-conditions, and discussed how having these differences, and having to interact with others surrounding them, results in our developing skills and coming to new situations with particular expectations for what will happen.

In Part II, I talked about variation among autistic people: we each have a particular constellation of neurological characteristics that lead to different combinations of abilities and needs, which other people are often not very good at understanding. Our interactions surrounding the discrepancy between our realities and others' perceptions also affects how we think of ourselves, how we relate to others, and what skills we learn. I also talked about the variety of experiences we have relating to knowing (or not knowing) that we're autistic, and the different ways other can react to us if they know we're autistic, and how that affects our self-concepts and experiences.

Today, I'm going to bring that together with three other things: setting, plot, and character growth. I'll close with a few bonus things: some brief advice for writers, with links; a list of some common real-life aspects of autistic experience that are underrepresented in fiction; and a list of all the books and short stories I've mentioned as good representation, with descriptions, links, and (sometimes) caveats and content notes.


Good representation is aware of aspects of setting relevant to our experiences as autistic people (which may not be as relevant or salient to neurotypical people), and includes it when appropriate. This might be the setting(s) during the story, or settings that influenced the character prior to the story.

Some of those features are specifically relevant to neurological differences—for example, a character with an oversensitivity who has a difficult time with body odor is likely to have consistently bad public transit experiences in a hot city; a character with expressive speech difficulties will have different experiences if they have access to a communication device.

Sometimes they're related to demographic specifics, like the effects of attempts to socialize some autistic people into neurotypical gender roles for girls and women, or the ability to get a formal diagnosis, or access to good education. These can vary with time and place.

Sometimes they're not closely related to a character's specific neurological differences, or to demographic specifics, but are broader societal things, like whether a label exists for their differences, whether assistive communication devices are available, what the general attitudes toward disabled people are, what rights are regarded to be human rights and how consistently they're applied (or not applied) to autistic people, what laws about accessibility are and when they're followed versus not followed, whether there are disability advocacy communities and autistic communities and what they are like.

[image: Cover of the book This Alien Shore
Illustration of a white human woman with long
wavy red hair wearing a gold dress. A two-tiered
building teeming with aliens is in the background.
White text on black blocks reads "This Alien
Shore across the top of the illustration. A black
column with white text on the left reads
"C.S. Friedman".]
Some stories explore settings where many people are autistic, neurodivergent, or otherwise disabled. This Alien Shore includes multiple characters from a planet where most people are disabled; they use (voluntary) sets of facial markings to indicate particular neurologies and have formalized ways for working out competing access needs. Iwunen Interstellar Investigations, and other stories set in the same universe, includes an entire planet whose population is almost all autistic. "You Have to Follow the Rules" is a portal fantasy to a society with clear rules that support and respect particular autistic needs. Kea's Flight, the most dystopian of these, is set on a spaceship of disabled children and young adults governed by robots and neurotypical people. I would love to see more stories exploring societies of mainly autistic/disabled people; it's refreshing to read stories where it's normal, common, and supported.

In any setting, neurological and demographic characteristics may affect what access people have to helpful things, what aspects of harmful things they're likely to be subjected to, and what aspects they're able to avoid, and what expectations and strategies they've developed for managing relevant settings.


Autistic characters (almost always) keep being autistic throughout the plot. Good representation continues conveying their inner experiences, through description, narration, dialogue, or some combination; it takes into account the accumulated life experience autistic characters bring to the plot; and it shows how plot events, other characters, and setting(s) interact with the autistic characters' relevant neurological differences, skills, expectations, and strategies, including those influenced by demographic characteristics and personal history.

Regarding continuing to be autistic throughout the plot: It's beyond my scope to go deeply into this, but briefly, many autistic people are opposed to cures—and fiction that portrays cures—because they believe that to stop being autistic would involve changing them in such a fundamental way that the person they are would stop existing, and an unrelated person would exist in their place. This is not an attractive proposition to most people, and most people don't like to see this portrayed as a good thing. There are other reasons for objections to cure stories—an autistic character has lived a number of years of their life as an autistic character, experience makes brains really complex, and changing all that is not realistic; focusing on the unrealistic possibility of a cure diverts attention away from immediate, often very urgent support needs for currently-living autistic people which are already underfunded; and cure attempts and other coercive attempts to make autistic people less visibly autistic and more visibly neurotypical are extremely unpleasant to go through. Finally, stories with cure outcomes send the message to autistic readers that the good ending involves doing something they can't do.

Good representation sometimes directly addresses this, focusing on issues of autonomy, consent, and choice. In Becoming, which deals with aftereffects of an unwanted cure for a degenerative physical disability and synesthesia (though not for autistic social characteristics, which the participant retains), the cure is nonconsensual and traumatizing. In This Alien Shore, it is the disabled people who choose whether and what they want changed about themselves; in "Geometries of Belonging" and A Rational Arrangement, the mind-healers flat-out refuse to cure people who have not consented. "Twelve Seconds" looks at side effects of a cure (not for the autistic protagonist), and also has some commentary on future assistive technology; and in A Wizard Alone (New Millennium Edition) the autistic character declines to rewire his own neurology:
"The brain and the nerves and the mind I've got... even if I don't have them for some specific reason, they're mine. They're me. I've got a right to them, and I'm used to them. Besides, who knows what I might mess up if I started fiddling around?" (location 3572).
Character Growth

A character brings expectations, strategies, and their self-concept to the story; any growth they have during the story takes place against that context. They've developed those expectations, strategies, and self-concepts in response to particular experiences in particular settings, often involving interactions with other people. Their experiences have been influenced by their particular neurological characteristics and demographics, as well as other aspects of their life history.

Character growth doesn't have to be specifically about being autistic—but when it is about being autistic, good representation shows it as about being autistic—not about becoming more neurotypical.

Sometimes autistic characteristics become less apparent to other people over time. What can look to neurotypical people in real life like an autistic person becoming more neurotypical isn't; it might involve skill development on a different timeline, like learning to speak later, or it might involve learning to hide autistic traits or simulate neurotypical ones. When it's the latter, it's a strategy with costs, not a transformation. The costs might include decreased ability to learn, to interact with others, to avoid meltdowns, or to prevent burnout. It's usually adopted in response to substantial social coercion and often economic coercion. Good representation doesn't show learning to hide autistic characteristics or perform neurotypicality as becoming neurotypical, or as the ideal path to becoming a better person. (It tends not to present this as character growth at all, actually; when it shows up, it tends to be in descriptions of things the character does already that contribute to high stress levels, or to be explicit or implicit in internalized ableism; see The State of Grace, Anything But Typical, "How to Become a Robot in 12 Easy Steps," Experimental Film.)

Other autism-related character growth might involve getting better at dealing with being autistic in a largely-neurotypical world, by building on existing strategies or developing new strategies. These strategies might be for managing environments, advocating that specific needs be met, identifying unsafe (or safe) people and situations, avoiding meltdown triggers and other stressors, or any of the other myriad things autistic people commonly have to deal with. A character's knowledge, expectations, or self-concept might also change in response to plot events: they might learn more about autism or move toward self-acceptance, for example. They might also connect with other people who share their experiences, or come up with solutions to problems that meet multiple peoples' needs. Some stories that deal with this kind of character growth: On the Edge of Gone; Experimental Film; A Boy Called Bat; Queens of Geek.

Good representation might also show some autism-related character growth for the other characters (rather than having the autistic character[s] be the only ones changing). See M is for Autism and M in the Middle; Water Bound; Al Capone Does My Shirts; "Grandmother-nai-Leylit's Cloth of Winds"; A Rational Arrangement.


I hope you've enjoyed this series; I know it's covered a lot of ground. To sum up:

  • Autistic people have inner experiences and do things for reasons. Good representation shows those reasons as comprehensible.
  • Our experiences influence who we become over time, our expectations for new situations, and the strategies we develop for dealing with them.
  • Our neurological differences influence our experiences. These include various sensory, language, and social differences, as well as any special interests, other neurological differences, or co-conditions we have.
  • Each autistic person has their own constellation of neurological differences (which can change over time). Our diagnostic history and demographic specifics also vary; these interact with our neurological differences to influence how we think of ourselves and how others see us.
  • Other people often misunderstand what our neurological differences mean and may disbelieve us about our needs and abilities. Their responses are also influenced by how they see our demographic specifics, our personalities, etc. Our interactions with others are part of our experiences, and change who we become, our expectations, and our strategies.
  • We bring all that to the particular settings we exist in, which include our immediate situations and our broader cultural contexts.
  • We continue being autistic, and grow and change in various ways, including ones related to being autistic.
  • Good representation reflects our range of experiences, our expectations, our strategies and skills, and shows how they interact with specific settings and plot events, and how we grow and change as a result.

Thank you for reading!



Before I move on to the bonuses, a few acknowledgements: I'm thankful to online autistic and disabled bloggers and communities, especially #autchat participants; Disability in Kidlit and the many people who've written for it; Ada Hoffman's Autistic Book Party, without which I would have missed a lot of good books and short stories; Rabbi Ruti Regan, whose advocacy work on Twitter and at Real Social Skills has broadened and deepened the way I think about autism and disability; the University of Michigan's (now sadly-defunct) Culture and Cognition program, which taught me a lot about how children and adults learn culture; and Chavisory, whose post on invisible history provided a much better framing device than the one I'd originally come up with. Thanks also to Ada Hoffmann, Andi C. Buchanan, and Michael A. Cohn, who gave feedback on an early draft, and to Shannon Rosa for being patient and flexible.

Writing Advice

Writing good representation is not necessarily easy, but it is possible and valuable. Here's some brief advice, followed by links to more advice.

For new writers: You will get a lot of writing advice. A small amount of it will be incredibly helpful to you. Experiment. Discard what doesn't work or what's infeasible for you, and don't feel bad about doing so. If you are autistic or similarly neurodivergent, your writing processes may look different from neurotypical writers' processes; I've added some links by autistic writers on writing below.

For writers worried about writing autistic characters well: If you look back at a draft, evaluate the portrayal of the autistic character, and go "oh my god, what have I done," it means that you live in a culture that tends to endorse particular stereotypes of autistic people and discount autistic people's experiences. Writing involves doing multiple cognitively taxing things, often simultaneously; to avoid shutting down, brains will make shortcuts and compromises and temporarily substitute easy things for the complex things we actually want to wind up on the page. Sometimes those easy things are stereotypes. When they show up drafts, it doesn't mean you're a bad person. It means you're a person who's a) doing challenging things and b) has a head start on identifying what you want to fix in the next draft or do differently in the next piece.

Learn about autistic people (even if you're autistic). Don't rely primarily on non-autistic sources. This doesn't mean never use them—it just means that, overall, they're not as reliable as autistic sources, especially with respect to internal experiences.

Sensitivity readers are a good idea. It is a good idea to pay them. Sometimes an editor or publisher will find and pay for a sensitivity reader, but this is not a universal practice. Sometimes you can offer to swap critiques with an autistic writer instead of monetary payment. They may say no, and it may have nothing to do with you; sensitivity reads can be draining even when the book is quite good, or they may just be very busy. Expect that a sensitivity reader will identify issues and recommend changes. Leave enough time to make changes. If you want to thank your sensitivity reader by name in acknowledgments, make sure to ask them if it's okay first.

You will not be able to satisfy everybody, even with multiple sensitivity readers and/or beta readers. If you've struggled with this and have come up with a good way to be at peace with it that doesn't require radical personality changes, please share it; inquiring minds want to know.

General Autism Resources

Resources on Writing Autistic Characters

  • Disability in Kidlit has articles on the portrayal of autism in young adult and middle grade books, many of which are relevant to other genres. They also publish book reviews and interviews with authors and cover other disabilities as well; you can search for specific content types here.
  • Ada Hoffman reviews speculative fiction and poetry with autistic characters and/or by autistic authors at Autistic Book Party; Ada's blog has regular roundups of autism news, including links to commentary on media and reviews.
  • Writing in the Margins has a database of sensitivity readers, including autistic ones. All readers are independent contractors who've asked to be included in the database.

Resources for Autistic Writers


A Partial List of Things Common in Real Life and Underrepresented in Fiction

Note that I haven't read all books with autistic characters, and there are likely good portrayals of these matters I have not encountered.

Neurological Differences

  • Sensory differences and stimming: Sensory undersensitivities; stim toys.
  • Language and speech differences: More non-speaking and partially speaking characters, especially as protagonists. More assistive communication devices, including for intermittently speaking characters. See also Ada's post.
  • Social abilities and skills: Characters who are good with people-focused vocations.
  • Special interests: Understanding people (psychology, anthropology, etc.); autism.
  • Other differences: Executive function difficulties, including disorganization and autistic inertia; catatonia and other motor difficulties; alexithymia.
  • Co-conditions: epilepsy; intellectual disability; ADHD; connective tissue disorders (which have common co-conditions of their own, including POTS and mast cell disorders); dyspraxia; dyscalculia; migraines; mood disorders; plurality; tic disorders; visual impairment; chronic illnesses.

Variability and Diversity

  • Autistic characteristics: Inconsistent functioning; failure to recognize skills; people who are mentally categorized by others into different boxes at different times; characters with a larger number of support needs.
  • Diagnosis: More on self-diagnosis and the dynamics surrounding it; characters diagnosed as children but not told until after seeking and receiving an adult diagnosis; misdiagnoses and accurate diagnoses of other conditions; people re-evaluating their lives after receiving a diagnosis; difficulty or inability to access a diagnosis; choosing not to seek a diagnosis due to concerns about discrimination.
  • Gender role pressures: More for men and boys. How gender role pressures play out in romantic relationships (with same-gender partners and otherwise).
  • Trans/nonbinary genders: Characters in YA novels; more portrayals of trans women.
  • Race and ethnicity: More nonwhite characters in general; autistic communities and disability communities being largely white, failing to include issues important to minority communities, failing to take into account the effects of racism when looking at mistreatment of nonwhite autistic people (especially with respect to child abuse and police violence); unequal allocation of resources for special education, providers lacking knowledge of cultural specifics.
  • Sexual orientation: Non-straight characters in straight relationships; aromantic characters; more non-straight men.
  • Other things: More intersectionality (characters who differ from stereotypes in more ways than one); more older autistic characters, including elderly ones; more portrayals of autistic parenthood; more low-socioeconomic-status characters; more physically disabled autistic characters; autistic characters with non-psychic superhuman powers.


  • Special ed settings / characters with special ed experience
  • Institutional settings / characters who've been institutionalized in the past
  • Higher education settings
  • Effects of disability-related laws and policies
  • Access to supports: Accommodations at school and work, characters with support workers, service and emotional support animals.
  • More societies, groups, and communities of autistic and other disabled people! (See this thread for more thoughts)

  • Various kinds of mistreatment that occur in real life (including sexual abuse, which is extremely high for intellectually disabled autistic women in particular; domestic violence)
  • More romances and friendships with more than one autistic/similarly neurodivergent/disabled character
  • Sagas looking at lifespan changes and/or aging
Character Growth

  • More character growth unrelated to being autistic
  • Recovery from burnout
  • Learning to recognize your limits
  • Learning to self-advocate
  • Learning to identify and avoid harmful people
  • Learning to manage excessive/painful empathy


List of Books and Short Stories with Good Representation

Disclaimers: I haven't read all works with autistic characters; there were over 70 books I didn't even manage to look at. If a story's not on this list, that doesn't necessarily mean I thought it wasn't good representation; I may just not have read it, or not have had enough to say about it to warrant inclusion.

I've included some stories I have reservations about because they got some things really right; those reservations are listed in the notes. I've added content notes when I thought content was particularly likely to be triggering to some readers (mostly focusing on autism-related content). I may have missed some things that are major issues for you.

Unless otherwise stated, the protagonist is autistic.

Al Capone Does My Shirts by Gennifer Choldenko (middle grade). Narrated by Moose, the brother of the autistic character Natalie, and set on Alcatraz Island in the 1930s, where their father works. Natalie's mother has subjected her to multiple therapies to try to "cure" her; part of the plot revolves around trying to get a school for younger girls to admit her. Moose is generally good at recognizing when Natalie's being treated unfairly and pushes back against it. I would not recommend this book for an autistic kid due to frequent ableism; I do recommend it for how it portrays interiority for a non-point-of-view autistic character. Later books in the series are less good about calling out ableist treatment and sometimes appear to endorse it. CN: harmful therapies; ableist language and treatment; infantilization. Goodreads page; Jessica Mulqueen's review at Disability in Kidlit.

Anything But Typical by Nora Raleigh Baskin (middle grade). Jason Blake is a twelve-year-old fiction writer and special ed student who develops an online friendship with a girl via their shared interests in writing. I have multiple reservations about this book: Jason jumps to the conclusion that she's his girlfriend without her knowledge or input, and the text doesn't address it. When he meets her, he learns she's blind, but her disability seems to disappear after that. The book uses another disability (dwarfism) as a metaphor for autism (Jason is writing a story about a dwarf named Bennu and his decision to be cured or not be cured). Jason explicitly addresses the reader as neurotypical, which may feel odd for an autistic reader. He also lists possible causes for autism—some of which are clearly intended to be read as implausible—and the list includes vaccinations, and it's not explicitly stated that that's inaccurate. I've included it because it's the only example I've found of difficulty meeting gender expectations for boys, and because he talks about his experience with being diagnosed as a child. Overall, it's a realistic portrayal of an autistic kid with substantial attention to interiority. Goodreads page; Emily Brooks' review at Disability in Kidlit.

"Becoming" by Julie Nov√°kov√° (SFF). A physically disabled, non-neurotypical character who voluntarily became the control node of a space station is "rescued" and cured of her physical disability without consent. Some years later, she's given the option to reverse the cure. She's synesthetic, detail-oriented, and "socially incompetent"; I read her as autistic for those reasons. CN: Nonconsensual cure. Ada Hoffmann's review.

A Boy Called Bat by Elana K. Arnold (kids' chapter book). Bat's veterinarian mother brings home a baby skunk; he tries to convince her to let him keep it. A charming book with good interiority. Bat's father has Chinese ancestry (confirmed in the sequel Bat and the Waiting Game). Goodreads page; reviews by Nicole Panteleakos and her ten-year-old goddaughter Meadow on Disability in Kidlit. [Disclosure: I was hired by the editor to sensitivity-read educators' pamphlets for both books.]

Blind Lake by Robert Charles Wilson (SFF). A town of scientists using advanced technology to watch aliens on other planets is suddenly put under quarantine. The autistic character, eleven-year-old Tess, has multiple scenes though she's not a protagonist. CN: Stalking, violence, violent death (not of the autistic character). Goodreads page; Ada Hoffmann's review.

The Book of How to Live” by Rose Lemberg (SFF). Efronia is a skilled artificer and inventor working at a university. She's an outsider in more ways than one—in addition to being autistic, she's magicless and from a distant part of the country. A story about exploitation, broken promises, common cause, and hope. Ada Hoffmann's brief review. [Disclosure: I know Rose online and we've had a number of conversations about autism; they've also written questions for an online chat I run.]

Carry the Ocean by Heidi Cullinan (romance). Autistic college student Emmet falls in love with Jeremey, a recent high school grad struggling with anxiety and depression. Nice examples of accommodations by Emmet's family and within their relationship. It's mentioned that Emmet's aunt, who is also autistic, is different from him. I had some reservations: in parts, the book reads like a how-to manual for disabled teens on gay male dating; there's a quadriplegic character who fits an "angry crip" stereotype; and there's some uncomfortable ableism by Emmet toward other disabled characters. CN: ableism including the r-word, internalized ableism, homophobia. Goodreads page; Willaful's review.

A Desperate Fortune by Susanna Kearsley (historical fiction/romance). Sara Thomas is a codebreaker hired to break the cipher on a 300-year-old journal of historical interest. Alternates between sections of the (decoded) journal and Sara's romance with Luc, a neighbor with an autistic brother and niece. CN: Brief references to ableism by treatment providers. Goodreads page.

"Difference of Opinion" by Meda Kahn (SFF). Keiya, a nonspeaking space station janitor and former anti-eugenics activist, has a relationship with a co-worker. A vivid, memorable story about dehumanization and eugenics. Strongly recommended. Nonwhite bisexual protagonist; F/F romance. CN: Eugenics; dehumanization; medical abuse; removal of a communication device; self-injury; exploitation of disabled workers; cooptation for "inspirational" purposes; forced memory erasure. Goodreads page.

Experimental Film by Gemma Files (horror). Lois, an older autistic parent of an autistic child and a former film critic and teacher, discovers historically important film footage. Strongly recommended. CN: Horror; ableism; a lot of internalized ableism; references to past human sacrifices of the elderly and disabled; a magical blindness trope near the end. Goodreads page; Ada Hoffmann's review.

Failure to Communicate by Kaia S√łnderby (SFF). Born in a future where eugenics has eliminated most neurodivergent people, Xandri Corelel negotiates with aliens using her learned skills at reading nonverbal-behavior-as-a-second-language. Bisexual nonwhite protagonist with synesthesia, low-key polyamorous romance subplot, supportive and accommodating friends and coworkers. First in a series. Strongly recommended. CN: references to past child abuse including abusive therapies, a section near the end with explicit visual descriptions of historical war crimes. Goodreads page; RoAnna Sylver's review.

"Geometries of Belonging" by Rose Lemberg (SFF). Parét, a non-autistic mind-healer, is asked to cure an autistic genderqueer adolescent, Dedéi (who he does not cure because Dedéi does not consent). Dedéi has notable language differences and motor difficulties, and a special interest in magic. CN: Fictional gendered slurs; child abuse; averted filicide. Ada Hoffmann's review. [Disclosure: I know Rose online and we've had a number of conversations about autism; they've also written questions for an online chat I run.]

"Grandmother-nai-Leylit's Cloth of Winds" by Rose Lemberg (SFF). Non-autistic protagonist with a mostly nonspeaking autistic child. A complex story about family, travel, finding a place for oneself, and gender and gender transition. All nonwhite characters.  Ada Hoffmann's brief review; Rose's story notes. [Disclosure: I know Rose online and we've had a number of conversations about autism; they've also written questions for an online chat I run.]

Harmonic Feedback by Tara Kelly (young adult). Drea, a sixteen-year-old with a special interest in sound design, moves to a new area, makes friends, and has a romance. CN: Drug abuse, ableism (including some by the protagonist) including the r-word, internalized ableism. Goodreads page; Mary Wilson's review at Disability in Kidlit.

"How to Become a Robot in 12 Easy Steps," by A. Merc Rustad (SFF; link is to a podcast; scroll down for text). An amazing, beautiful story about many things, including gender/species dysphoria, friendship, and depression. It captures a particular sense of not fitting in extremely effectively. Strongly recommended. CN: Suicidal ideation, brief scene of psychological abuse. Goodreads page; Ada Hoffmann's review. [Disclosure: I know Merc online.]

"Inappropriate Behavior" by Pat Murphy (SFF; link is to a podcast; scroll down for text). Twelve-year-old Annie operates a remote mining robot. A shipwreck survivor washes up on her island and she must convince someone to rescue him. Sharp critique of the pressure to act neurotypical. CN: normalizing therapy. Ada Hoffmann's short review.

"Iron Aria" by Merc Rustad (SFF). Kyru, an artist with metallurgical magic and difficulty with expressive speech, leaves home and accompanies an army to a mountain that needs his help. CN: Misgendering. Ada Hoffman's short review. [Disclosure: I know Merc online.]

Iwunen Interstellar Investigations by Bogi Tak√°cs (SFF). Multiple autistic characters on a planet of autistic people have adventures. The master list of episodes includes this and other stories in the same universe. The plot can be difficult to follow; readers may find it easier to start with some short stories or the concepts page. Multiple trans/nonbinary characters. Ada Hoffmann's review of "Iwunen Interstellar Investigations (Prologue Season)." [Disclosure: I know Bogi online and we've had a number of conversations about autism; e has also written questions for an online chat I run.]

Kea's Flight by Erika Hammerschmidt and John C. Ricker (young adult). Multiple autistic and neurodivergent people on a ship of disabled children run by robots and neurotypical people. I have a couple major reservations. It invisibilizes the higher-support-needs kids on the ship; the story and main characters seem to forget about them, and don't involve them in decisions about how to ensure they receive support. The protagonist laughs at her also-autistic boyfriend's word-retrieval issues. Characters have a variety of sexual orientations, including an autistic secondary character who is an asexual lesbian.  CN: ableism; also see reservations mentioned above. Goodreads page; Ada Hoffmann's review; interview with Erika Hammerschmidt.

M in the Middle by the students of Limpsfield Grange School (a school for girls with communication and interaction difficulties) and Vicky Martin (middle grade). The sequel to M is for Autism (see below). M deals with an uncaring friend, family difficulties, ableism by her teachers, and stressful life events. Revolves around M's struggle with and increasing acceptance of being autistic. I have a major reservation: M develops an obsession with a boy she knows and downloads over 20,000 pictures of him onto her laptop; the only character who thinks it's inappropriate is the principal, and his objection is portrayed as ableism. Autistic traits don't make it okay to stalk people, and it's jarring that an otherwise very good book falls down on this. CN: references to abusive grandmother; exploitation by a friend; ableism; internalized ableism. Goodreads page; review at Books on Autism.

M is for Autism by the students of Limpsfield Grange School (a school for girls with communication and interaction difficulties) and Vicky Martin (middle grade). M struggles at school and eventually receives an autism diagnosis; she talks with a helpful counselor, reads about autism, and becomes more comfortable with herself. Vivid descriptions of her experiences. CN: Ableism; internalized ableism. Goodreads page; Books on Autism's review.

On the Edge of Gone by Corinne Duyvis (young adult SFF). After a comet hits the Earth, Denise struggles to get herself and her mother a place on a generation ship while looking for her missing sister. Denise is portrayed complexly and realistically, including with respect to internalized ableism. Part-Dutch, part-Surinamese Black teenage protagonist. CN: Drug and alcohol abuse, ableism, internalized ableism. Goodreads page; Ada Hoffmann's review at Disability in Kidlit; interview with the author at Disability in Kidlit. [Disclosure: Corinne co-runs Disability in Kidlit, which I've written several articles for, and also referred a client to me for a sensitivity read.]

Queens of Geek by Jen Wilde (young adult). Charlie and Taylor, two Australian teenage girls, attend a Comic-Con-style convention in the United States along with their guy friend Jamie. Charlie (not autistic) is promoting her first movie along with her ex-boyfriend Reese. Taylor was recently diagnosed with autism and is falling for Jamie; she also meets another autistic girl at the conference. A pleasant, heartwarming exploration of Charlie and Taylor's experiences, friendships, and relationships. CN: emotionally abusive antagonist. Goodreads page; Kim Broomall's review at Disability in Kidlit.

A Rational Arrangement by L. Rowyn (SFF romance). A Regency-style M/M/F polyamorous romance on a secondary world. Wisteria, the female protagonist, is autistic. Her business-like, thorough approach to proposing a marriage contract is played for humor, though the humor comes from the disjunction between social expectations and Wisteria's sensible approach, which I thought worked well. I had some reservations: the nobility are served by giant cats who the humans colonized and made human-style sentient, and the text doesn't question this. Wisteria shows a love interest her attempt at a smile and he laughs at it. Her autistic characteristics seem to be limited to social interaction and body language. CN: Ableism, especially from family members; colonialism; a torture scene (not of the autistic character). Goodreads page; Ada Hoffmann's review.

The Real Boy by Anne Ursu (middle grade SFF). Oscar and his new friend Callie investigate a mystery. A favorite with many autistic readers I know; see Corinne Duyvis' review linked below for all the reasons this book is great. If the major identity-related plot twist makes you very uncomfortable, keep reading; it will get better. CN: Ableism, internalized ableism. Goodreads page; Corinne Duyvis' review at Disability in Kidlit; interview with the author at Disability in Kidlit.

Rogue by Lyn Miller-Lachmann (middle grade). After being expelled from school for hitting a bully, Kiara learns she's autistic. She works to make friends, including with a neighbor boy who fools her into helping procure drug-making supplies. She has a special interest in the X-Men and believes herself to be autistic from a mutation caused by "toxic chemicals"; her father says that isn't true, but she continues believing it. Protagonist's mother is El Salvadorian. CN: Drugs; child abuse (not of the autistic character); bullying; physical violence by the protagonist; exploitation of protagonist's naiveté; ableist language including the r-word. Goodreads page; Samantha Stanko's review at Disability in Kidlit; interview with the author at Disability in Kidlit.

"The Scrape of Tooth and Bone" by Ada Hoffmann (SFF). Lillian Howe brings her robot-fixing expertise and secret mission of sabotage to a fossil dig, where she pursues a relationship with the lovely widow Mrs. Hattie Bond Cunningham. Steampunk with ghosts and dinosaurs; themes of difficulty navigating gender roles and social expectations. Goodreads page. [Disclosure: Ada is in my writing group, and we've had a number of conversations about autism; she also helped write questions for an online chat I run, and I used her review website extensively while doing research for this series.]

The Someday Birds by Sally J. Pla (middle grade). Charlie, an (undiagnosed) autistic boy with diagnosed OCD tries to spot every one of a list of birds during a cross-country road trip with his siblings and a family friend. They are on their way to visit Charlie's father, who is in the hospital for medical treatment for a head injury he got in Afghanistan. Charlie's mother was Mexican. Goodreads page; Bogi Tak√°cs' review; interview with the author at Disability in Kidlit.

The State of Grace by Rachael Lucas (young adult). Grace, a high school student, deals with common teenage issues like dating, friendships, and family conflict. Excellent portrayal of interiority; strongly recommended. CN: some ableism, brief references to harmful childhood therapy, alcohol abuse. Goodreads page; Lorna's review at CrankyAutistic.

"They Jump Through Fires" by Gabriela Santiago (horror; link is to a podcast; scroll down for text). An autistic woman keeps vigil over her dead girlfriend. Protagonist of Mexican descent. CN: Graphic description of a decomposing body; body horror with rabbits. Ada Hoffmann's brief review.

This Alien Shore by C.S. Friedman (SFF). Kio Masada works to track a dangerous computer virus to its source. Masada and some other characters are from a planet where most inhabitants are disabled; contains interesting discussion about disability, cure, and accommodations. A parallel plot involves a teenage girl with biomodifications she doesn't fully understand. CN: abuse, ableism, references to eugenics, a weird bit where Masada thinks about whether autistic people can actually love (though the text seems to rebut this immediately). Goodreads page; Ada Hoffmann's review.

This Other World by A.C. Buchanan (SFF). Novella about a menopausal woman living in an alien culture, preparing for a major life change, and working as an architectural engineer. There's a mystery and a war. Goodreads page; Ada Hoffmann's review.

"Touch of Tides" by Luna Lindsey (SFF). A synesthetic xenobiologist on the moon Europa explores underwater life. Interview with the author.

"Twelve Seconds" by Tina Gower (SFF). Howard, a police station employee, uncovers peculiarities in records which connect with a plotline where a (non-autistic) coworker undergoes an experimental cure for PTSD. Howard uses augmented reality goggles for sensory overload; they also give him social information and instructions. CN: Attempted cure (not of autistic character). Available in the 2014 Campbellian Anthology (Goodreads page); Ada Hoffmann's review.

"Unauthorized Access" by An Owomoyela (SFF). An autistic hacker just released from prison for uncovering corruption gets pulled into uncovering corruption again. Ada Hoffmann's brief review.

An Unkindness of Ghosts by Rivers Solomon (SFF). Aster, a physician's assistant and slave on a generation ship, investigates a family mystery. Queer black intersex protagonist. Strongly recommended. CN: Extensive abuse, violence, and degradation, predominantly race-based; a suicide attempt; ableism. Goodreads page. I don't know of any reviews from an autistic perspective, but here is a review by Amal El-Mohtar.

Water Bound by Christine Feehan (romance). Rikki, a woman with a magical ability to control water, rescues a mysterious stranger who helps defend her from a dangerous stalker from her past. Amazing descriptions of sensory enjoyment and fun stimming with water magic. Note that the love interest is written to have many abuser red flags, and attacks Rikki while he's confused and disoriented after a concussion. Rikki's friends are reasonably concerned and discuss with her about whether he's taking advantage of her; she argues for her right to make her own decisions. CN: Some ableist language; abuser red flags; flashback scene to a house fire that killed Rikki's parents and nearly killed her; stalking; violence. Goodreads page; Willaful's brief review.

A Wizard Alone (New Millennium Edition) by Diane Duane. Kit and Nita, the two (non-autistic) protagonists, work to rescue Darryl, an eleven-year-old autistic magical prodigy. After feedback from autistic fans, Duane rewrote Darryl's portrayal significantly for this edition. Black autistic character. CN: ableist language. Alyssa Hillary's review comparing the original and New Millennium editions at Disability in Kidlit. The Goodreads page sends you to the wrong edition; for the New Millennium Edition, go here.

"You Have to Follow the Rules" by Ada Hoffmann. Annalee, a child with a special interest in Star Wars, discovers doors to another world at a fan convention. Interesting dynamics surrounding whose social rules are privileged.

You Look Different in Real Life by Jennifer Castle. Justine and four other teens, including the autistic character Rory, were in documentary films at ages six and eleven; now at age sixteen and being filmed for a follow-up, Justine is trying to figure out her place in life. Does a very good job portraying interiority through observations by another character. CN: five years before the book begins, the protagonist pretended to be friends with the autistic character and then dumped her (though the book handles this sensitively and effectively). Goodreads page; Corinne Duyvis' review at Disability in Kidlit; interview with the author at Disability in Kidlit.