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
www.riskyfuel.com

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.

Yeah.

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.

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Originally published at Medium

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

Elizabeth Bartmess 
elizabethbartmess.com

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.

Setting

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.

Plot

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.

Conclusion

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!

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Acknowledgements

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

• Kit Mead's autism resource collection is an extensive, curated collection of links and includes sections for multiple audiences.
• All the Weight of Our Dreams is a nonfiction anthology by autistic people of color and includes multiple pieces by autistic parents and people writing about trans/nonbinary gender identities.
• Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx is a good resource on lifespan issues and includes some discussion of gender identity and sexual orientation.
• The weekly chats on Twitter's #autchat tag, by and for autistic and similarly neurodivergent people, have covered many topics related to our lives. [Disclosure: I co-run these chats, along with my co-mod endever*.]

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 post on #ownvoices advice for autistic writers from Rose Lemberg and Corey Alexander
• Rose Lemberg's Writing While Autistic series
• Two archived Twitter #autchats on writing autistic characters as an autistic writer: 1, 2. 

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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.

Settings

• 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)

Plots

• 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

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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 Nováková (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 Sønderby (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 Takács (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 Takács' 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.

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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.

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