Thinking Person's Guide to Autism (TPGA) is the resource we wish we'd had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.
(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.
"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.
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.]
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 SiriWith 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 pedal 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.
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.
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.
"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?
I am still paying the price if my school deciding that forcing me to play was more important than keeping my straight As. That was literally 50 years ago.
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 is 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.
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 or lives without blaming our kids, or "autism." I understand, deeply, how parents of autistic 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 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 his 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 your kid sucks. You don't gett 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.
As a parent, having #ActuallyAutistic people to advise you is fundamental to a better understanding of your kids issues. My son's therapist had a diagnosis himself. The insight he provided was invaluable to my relationship with my boy.
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 Postarticle promoting her book are deservedly critical:
This article is her spiked-football victory dance. The LOSER parents go slow and build consent and trust and communication, but SHE grabbed that ball and ran for the touchdown. GOAAAAALL.
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.
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.
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.
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!
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 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.
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.
Two archived Twitter #autchats on writing autistic characters as an autistic writer: 1, 2.
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.
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.
In Part I, I talked about how neurological differences affect autistic people's internal experiences and strategies, and how we change over time as a result. Today, I'll talk about variation in autistic characteristics, in our and others' relationship to our diagnosis (or lack of it), and variation in demographics, as well as how others' perceptions of us influence how they treat us, and how we change in response. On Friday, I'll bring everything together and add some thoughts and links to advice on writing autistic characters, along with a list of some common aspects of autistic experience that are underrepresented in fiction, plus a list of all the books and short stories I've mentioned.
Even though autistic people have many things in common, we also vary a lot. Ideally, fiction reflects this, for multiple reasons: it's accurate; it helps autistic people be correctly identified as autistic even when we don't meet stereotypes; and it helps more autistic people see ourselves reflected and understood in fiction.
Representing our range of variation is a task for fiction as a whole—no single book or short story can capture our diversity—but on the level of an individual book, good representation means portraying realistically how a character's (or characters') particular configuration of autistic and demographic characteristics affect our experiences.
While reading, keep in mind that every autistic person is an individual with their own specific life experiences and personality; our specific autistic and demographic characteristics influence us but they aren't the sum total of who we are.
I also want to be clear that stories I list in this series are by authors who are already creating good representation; when I talk about how some things are underrepresented, the problem lies with the large amount of crap representation that I'm not including in this series. The best way to increase representation of underrepresented autistic characteristics and demographics is for agents, editors and publishers to replace bad representation with good representation that portrays diverse autistic experiences. (Supporting individual authors through Patreon or other crowdfunding platforms is also a good option for people who can afford to do so.)
Autistic People Differ, and Others Are Often Mistaken About What Those Differences Mean
Autism is “a combination of impairments in cognition, communication, sensory perception, and movement [which] combine in different ways.” Our specific configurations of neurological differences vary; the strategies we develop to deal with them vary; and our corresponding experiences vary. For example, one person with executive dysfunction that makes it hard to be on time and stay organized might develop extensive, effortful tracking systems, at the cost of having energy to socialize; another person might decide to reserve their energy for interacting with other people, and instead try to diffuse others' reactions to their being late or disorganized. These two people will have very different experiences.
[image: YA Book cover featuring a depiction of a white-appearing person with green wavy hair in one-quarter profile, on a sea-foam background with white text above and by their face reading "M in the Middle"]
Multiple stories explicitly reference this variation. M in the Middle and Experimental Film both give variations on a ubiquitous saying commonly attributed in real life to Stephen Shore: "If you've met one person with autism, you've met one person with autism." In a Wizard Alone (New Millennium Edition) one character notes that "there are probably as many kinds of autism as there are autistics" (location 631). In Harmonic Feedback, Drea's doctor notes that "No two people with Asperger's—or with autism, for that matter—are the same" (66). Iwunen Interstellar Investigations shows this variation by having a wide range of autistic characters.
Most people don't understand these differences well. There are very often discrepancies between the needs, abilities, and experiences a given autistic person has, and what other people attribute to them. Often, others think that if we do something once in one context, we can do it in pretty much any context at any time without much cost. They may also believe the converse—that if we can't do something in a particular context, we must be unable to do it in any context—which can mean our skills and abilities are underestimated and go unsupported or are responded to weirdly when do show them. Sometimes others attempt to mentally categorize individual autistic people into either an "essentially neurotypical" box or a "disabled and incapable" box, which misses important complexity that can make a huge difference to individual people (I won't go into this extensively, but if you want to read more, here are some links: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10.)
Good representation might show these social dynamics in action, or describe them through narration. In Queens of Geek, Taylor's friend Jamie pushes her to join the Queen Firestone trivia contest at a convention, saying she can do it because she came to the convention "[e]ven though it’s a big deal for you. Even with the crowds, the noise, and everything, you haven’t seemed overwhelmed at all” (50). Taylor responds: "I planned this. I prepared for this. I knew this was coming for weeks....Just because I made it here doesn’t mean it was easy. And just because I don’t seem overwhelmed doesn't mean I'm not" (50-51), and then she excuses herself to have an anxiety attack in the bathroom, overwhelmed by everything including Jamie's assumption. In The State of Grace, Grace expresses frustration with other people's lack of understanding that social interaction is draining and she needs downtime afterward. In A Desperate Fortune, Sara's sister has helped her with social skills to the point that her parents won't believe she's autistic.
In "Difference of Opinion," Keiya thinks about the surprise and difficulty non-disabled people have accepting that she can be both disabled and communicate, or that she can judge her own quality of life, and that she and similarly disabled people can mobilize politically. In "Inappropriate Behavior," the pediatric neurologist who sees Annie doesn't listen when she tries repeatedly to convey an emergency situation to him, assuming that his interpretation of events must be right and that instead of trying to convey something important, she's engaging in inappropriate behavior that he sees his role as teaching her to stop.
In an accepting environment, like the planet of autistic people in Iwunen Interstellar Investigations or the planet of disabled people in This Alien Shore, these dynamics might be completely absent.
We change in response to the discrepancy between reality and others' misperceptions. Repeated experiences like this change our self-concept and our relationship to other people; they change how we expect to be treated, and how we approach and respond to new situations. In Experimental Film, Lois expresses something I've often heard autistic people express about growing up with a lifetime of experiences with having needs that other people don't share and may not believe in:
"I’d already learned a long time ago how the way other people thought about whatever I was doing at any given time was always the most important thing, and that when it came to my own desires—my own needs—there was no contest, none at all; they came last, always, not first" (locations 934-936).
Often, we wind up hiding access needs, or pretending we don't have them, even though it makes it harder for us to do things. In "Unauthorized Access," the protagonist can communicate more clearly through text, and would much rather do so, but doesn't, because others don't understand why it helps her:
"She could write out an explanation—hell, she could link one. But the last time she’d tried that, the response had been an irritated Just explain it to me; I don’t want to read all this stuff, and anyway not a lot of people really got how much more comfortable she was communicating through writing than through voice."
We may also hide skills. In "Difference of Opinion," Keiya has stopped doing anti-eugenics activism because of non-disabled people's reactions to her work. We may also learn to hide skills if they're misinterpreted as proof we don't have deficits, because we can't afford the withdrawal of support that may follow. This is really important: Other people's beliefs about what we can and can't do—and their willingness to listen when we say what we can and can't do, and what kind of support we need—make a huge difference in our lives.
It's particularly valuable to portray how our abilities and inabilities vary, but that variation doesn't fit into neat categories; to show how our actual patterns of skills don't consistently match up with others' expectations; to show how context and support can be important; to show how draining hiding abilities and inabilities is; and to show how stressful trying to negotiate this with other people is. That involves a lot of work that often goes unrecognized; seeing it in fiction can be very validating for people who do that work, and it can also be informative for people who don't have to.
Having (Or Not Having) a Label, And The Many Experiences Surrounding It
The availability of the label "autistic," and whether we and/or other people know it applies to us, can play a complex role in our experiences, along with whatever life history we went through before learning we were autistic—if we learned it at all. In the absence of an explanation, we struggle with not knowing why we're different or treated differently. In a setting where the label exists, accessing it can still be quite difficult; stereotypes of what autistic people look and act like can result in providers misdiagnosing or failing to diagnose us and can prevent us from realizing we're autistic (something common for people who are female-presenting, and/or nonwhite, or adult, or who can speak or make eye contact or any of a number of other things).
Some people may not seek a diagnosis for themselves or for a family member because it may be unaffordable, or there may be no one knowledgeable in travel distance, or due to realistic fears about the diagnosis leading to medical discrimination for other conditions or being used against them in a custody battle, or because they don't currently need formal accommodations, or they judge that knowing they're autistic is enough, or because they've been trained to think of their attempts to get autism-related needs met as equivalent to hurting others.
If we're diagnosed and others know about it, we may get understanding and support, or we may get disbelief and dismissal, or we may get mistreatment and discrimination, or harmful or unhelpful therapy; or we may get all of the above.
The stories in this series reflect some of our varied experiences surrounding diagnosis. In The Real Boy Oscar is undiagnosed (no label exists where he is) and his struggle with not knowing why he's different from others is evident. In various other stories, protagonists are (or were) diagnosed as children. In M is for Autism, the diagnosis is a relief; in the sequel, M in the Middle, some of her teachers respond well and others don't. In Queens of Geek (diagnosed in high school) the diagnosis is a relief. The protagonists of Anything But Typical, "Inappropriate Behavior," and Harmonic Feedback have more complex relationships to their diagnosis, and more experiences of mistreatment when others know about it. In The State of Grace, Grace's diagnosis has helped her make sense of her experiences, even though teachers sometimes refuse to honor her very minimal accommodations and people sometimes say inaccurate and insensitive things to her about autism. Kiara in Rogue realizes she's autistic during the course of the book, after a neighbor suggests it and she reads about it in books and on the Internet (including reading some misinformation). In On the Edge of Gone, Denise, a part-Dutch, part-Surinamese Black teenage girl, received a long history of misdiagnosis despite clear autistic symptoms, due to racism and sexism:
"Therapists and teachers labeled me as bipolar, as psychotic, as having oppositional defiant disorder, as intellectually disabled, and as just straight-up difficult....At the time, I thought the diagnosis was delayed because I was bad at being autistic, the same way I was bad at everything else; it took me years to realize that since I wasn't only Black, but a Black girl, it's like the DSM shrank to a handful of options, and many psychologists were loath to even consider those" (210).
Sara in A Desperate Fortune was diagnosed as an adult; her parents refuse to believe her diagnosis, and she was given harmful misinformation by providers (such as being told she'd never be able to have a relationship). Rikki in Water Bound is undiagnosed and worries, incorrectly, that she's a sociopath, though other characters disagree. Lillian in "The Scrape of Tooth and Bone," set in an alternate Victorian era, was misdiagnosed with hysteria when younger (although, in one of the more optimal possible stories involving stigmatizing misdiagnosis, she got a vibrator out of it). Lois in Experimental Film had the common experience of realizing she was autistic as an adult after her child was diagnosed and she began learning about autism.
It's useful to portray similarities and variation surrounding our self-knowledge and diagnosis-related experiences in fiction because many people—including many autistic people—have misconceptions about how easy it is to get a diagnosis (not very), how accurate or inaccurate the diagnosis process is (autism is often missed), how knowledgeable providers are (often not very), and how knowing and not knowing we're autistic affects how we think of ourselves.
The demographic stereotype of autism is of a white middle-class cishet (or desexualized) boy or man. If a boy, the stereotype may be a nonspeaking bundle of "behaviors"; if a man, he's more likely to portrayed as a quirky genius with STEM talents and no significant disability. Neither of these stereotypes represent white middle-class cishet autistic boys and men well; they also result in people who don't that narrow demographic slot having even rarer good representation.
While I believe all the stories I'm going to mention portray autism well, I can't consistently speak to how effectively they portray all the other identities and experiences I'll talk about, though I've tried to be consistent with what I've seen autistic people in demographics other than my own. As with all things in this section, no group is a monolith: within a demographic, experiences will still vary; they can vary even for people who share multiple demographic characteristics in common. Finally, few issues are completely exclusive to one group, but some things affect some groups more strongly than others, and that can be very important.
Gender role expectations are complicated, contextual, and can be difficult to learn. Gender role expectations for (and by) girls and women tend to be particularly incompatible with autistic people's neurologies. Those expectations involve higher demands for accurate emotional caretaking of others, for managing others' executive function in addition to our own, for detecting unspoken expectations and rapidly complying with them, and for having fewer needs or at least avoiding displaying them (or, sometimes, to act like we have different needs than we do, so that people who do have those needs will feel more comfortable).
Good representation reflects this, when it's relevant to the character and story. In Queens of Geek, Taylor talks to her good friend Charlie about Taylor's gender nonconformity, which she worries will make it harder for her to have a successful relationship:
“Sometimes I don’t think I’m being a girl right. I have an undercut and wear clothes I’ve bought from the boys’ section, and I don’t wear makeup or do my nails. I watch horror movies and play video games and burp and swear and don’t talk about my feelings or any of that crap” (182).
In The Scrape of Tooth and Bone, Lillian is expected to sit at home, "pretending to do needlepoint and having maybe one interesting robotics project per year," which she's uninterested in doing; she also comments to her love interest about how meltdowns conflict with gendered expectations: "I’m so ladylike and good most of the time and then I turn bestial at a moment’s notice, and I can’t control it." In M is for Autism, M says "Sometimes I find it easier to talk to boys than girls. I find boys straightforward. They just ask a question and I answer it. I ask a question and they answer it" (45).
Healthcare providers are less likely to diagnose autistic people they perceive as girls or women (which includes cis girls and women, many trans girls and women, many trans men who have not transitioned or don't pass as men, and many nonbinary people). Autism diagnoses have historically focused on boys (and to a lesser extent men), and this biases many people's expectations for what autism looks like toward a particular kind of presentation (which isn't universal to men or boys, but is more common for them). Providers are also less likely to diagnose people they perceive as girls and women even when they have the same presenting characteristics as boys and men. (The general tendency for healthcare professionals to take women and female-presenting people's concerns less seriously probably also plays a role in underdiagnosis.) In M is for Autism, M's counselor clarifies it's an "outdated view" that it's a boys' condition and that "[m]ore and more girls are being diagnosed with autism" (78). In Harmonic Feedback, Drea's doctor tells her that "females have less obvious symptoms" (66, although I think this is outdated now; a lot is known about what less stereotypical autistic characteristics look like, we just need healthcare providers to know what they are and to look for them).
This doesn't mean autistic men and boys don't undergo gender role pressures that are incompatible with autistic characteristics, or that healthcare providers always correctly diagnose autistic people they perceive as boys or men, even though the problems seem to be worse for other people; good representation can show this too. In Anything But Typical, Jason relates a story about how his mother bought him comfortable leggings in nursery school because he couldn't stand how the waistbands of pants felt; in kindergarten, when she heard other boys teasing him by repeatedly asking if he was a ballerina, his mother took away his leggings and made him wear pants.
Trans/nonbinary genders: It's common for autistic people to be transgender/nonbinary (I'm using a slash here because some nonbinary autistic people don't identify as transgender and some do). In this set of studies, autistic people were about three times more likely than non-autistic people to identify as a gender other than the one they were assigned at birth (overall, about 23% of autistic people assigned male at birth and about 33% of autistic people assigned female at birth).
There are multiple representations of trans and/or nonbinary autistic characters in Science Fiction and Fantasy (SFF), though I'm not aware of any outside of SFF. In "Iron Aria," an autistic trans man uses metallurgical magic against an opposing force (there is also a trans woman general, though I don't think she's autistic). Iwunen Interstellar Investigations features nonbinary autistic characters who are nonbinary in different ways having adventures. "Geometries of Belonging" includes a genderqueer autistic teenager. In "How to Become a Robot in 12 Easy Steps," the main character, Tesla, identifies as a robot (or wants to become a robot—they describe it in both ways), and it's implied that this also involves not identifying as their assigned gender. In An Unkindness of Ghosts, Aster (who is also intersex) describes her gender as "a boy and a girl and a witch all wrapped into one very strange, flimsy, indecisive body" (location 4441), and nonconformity to expected gender roles is one of various ongoing themes in the book.
Race and ethnicity:Of the good portrayals I've found of autistic characters, about a quarter feature autistic characters of color. (Not all of these are set in the U.S., but for comparison, the figure for the U.S. population is about 40%.) Several include commonly discussed issues among autistic people of color, such as underdiagnosis and misdiagnosis, increased risk of violence from police, and eugenics. There are other issues I've seen discussed, such as disability communities' failures to be racially inclusive and to take into account the way that racism combines with ableism, that I haven't seen portrayed; I'll include some of those on Friday in my list of common real-life things that are underrepresented in fiction.
In the previous section, I mentioned Denise's delayed diagnosis due to racism and sexism in On the Edge of Gone. In An Unkindness of Ghosts, set on a generation ship where the black inhabitants on the lower decks are slaves to the white inhabitants on the upper decks, the protagonist, Aster, has multiple encounters with guards involving violence or threats of violence; her difficulty with language and social interaction increase the danger. In "Difference of Opinion," Keiya includes her "brownish" skin color along with visible disability-related differences in a list of things that make her a eugenics target. In Rogue, Kiara, a character with an El Salvadorian mother, mentions that when she stopped speaking in kindergarten, her grandmother said (incorrectly) it was because she was learning two languages at once, similar to real-life situations where autism-related speech delays are inaccurately attributed to bilingualism. In "The Book of How to Live," Efronia is from a rural village; her accent is mocked by the city-dwellers and her contributions are taken advantage of by a university that previously admitted a cohort of ethnic minority students for long enough to complete a set of inventions, then rescinded their admission, imprisoned them, and kept the inventions.
In "They Jump Through Fires," the protagonist is of..
"A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are....[T]he autistic characters [readers and viewers] are used to seeing have no depth of experience. They are people without history." —Chavisory, at Chavisory's Notebook
This series is about what autistic characters look like when they're written well, when they have the depth of experience referenced in the above quote. I've included examples from books and short stories, mainly middle grade and young adult books and adult science fiction and fantasy, where I've found the best representation.
Today, I'll talk about interiority and neurology: how autistic people are people with inner experiences who do things for reasons, with those reasons influenced by common aspects of our neurologies. I'll give examples of good portrayals, and I'll talk about common consequences of having these kinds of experiences, and how they shape who we are.
Tomorrow in Part II, I'll talk about variation in autistic traits and in demographic characteristics, how others respond to us based on their perceptions and beliefs, and how that shapes us, along with examples of good portrayals. I'll also talk briefly about setting, plot, and character growth, and why they're relevant to good representation.
On Friday in Part III, I'll wrap things up and add some links for writers along with a list of some real-life things often missing from fiction. I'll also list all the books and short stories I've mentioned, with content warnings and links to reviews.
Although I've focused on autistic characters, I think much of this also applies to other disabled people and characters, particularly "autistic cousins": people who share significant life experiences with autistic people due to hydrocephalus, cerebral palsy, ADHD, PTSD/CPTSD, or something else. When I use the term neurotypical in this series, I'm using it to mean, loosely, "people who are neither autistic nor autistic cousins." Because I've focused on stories with autistic characters, I often wind up contrasting "autistic people" with "neurotypical people," but I don't mean that to suggest that there are no other people in the world.
Interiority: People With Inner Experiences Who Do Things For Reasons
Like all people, autistic people are people with inner experiences who do things for reasons. We differ neurologically from neurotypical people in various ways, including sensory perception, language and speech, social abilities and skills, and ability to take intense enjoyment in specific interests, and a variety of other things. We may also have co-conditions that aren't part of autism but are more common in autistic people, like depression or OCD.
Our neurological differences mean that our experiences can differ from neurotypical people's experiences, in significant ways. We might look like we're in the same situation as a neurotypical person, yet the situation can be different for us—and our actions need to be responses to the situations we're actually in.
When others don't understand our 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. That changes the situations we're in, too.
These experiences build up over our lifetimes, and when we can, we develop strategies—sometimes quite effortfully—for coping with and influencing situations and others' responses to our actions.
Bad representation in fiction upholds the idea that our actions are "behaviors" without reasons or causes, and doesn't take into account that we change in response to our experiences. Good representation portrays autistic characters' experiences and actions as comprehensible, often through narration or (if the autistic character is not the viewpoint character) someone else's awareness of our experiences and the reasons for our actions—which can include our expectations and skills learned from past situations. Showing us as comprehensible helps neurotypical people understand autistic people better, and—importantly—lets autistic people see themselves understood and reflected, something that's often missing from real life and is extremely satisfying to encounter, whether in real life or in fiction.
While reading this, keep in mind that while autistic people have neurological differences from neurotypical people, we're not made up of neurological differences; we're full people whose experiences often differ from neurotypical people's, and whose strategies for living in the world have to take our differences into account.
Sensory differences can make the world more painful; they can also make some sensory experiences exceptionally meaningful and rewarding. Often other people don't understand the intensity of these experiences or how they affect us.
[image: The book You Look Different in Real Life, with a black background, white block text reading "You Look Different" over blue script text reading "in real life" over an illustration of four teens sitting on a gray wall, with a hoodie-wearing teen standing in front, with one arm raised.]
Many stories show our experiences of sensory overload, and how that leads to our responses. In You Look Different in Real Life, a group of teenagers are in a busy city looking for one character's missing mother. The autistic character, Rory, is undergoing increasing sensory overload, and her experiences are clearly shown through her body language: when a car honks, she jumps, freezes, and then breathes in slowly to get herself under control; she winces when people shout, when a baby cries, when dogs bark, and finally has a meltdown in response to sirens and kids shouting. (Note that while her breathing in slowly is a strategy, her meltdown is not. Meltdowns aren't strategies; they're involuntary responses that happen when all our other strategies for managing intolerable situations aren't enough.)
In The Someday Birds, Charlie has an overly intense sense of smell. He's on a cross-country road trip with family, and his siblings have adopted a dog who's packed into the car with them. Charlie describes his experience evocatively: "[The dog] started out smelling like rotting fish. Now he smells like rotting fish someone left in a public porta potty overnight. I am gagging so bad, I'm riding with my head out the window" (location 1167). Other stories that show sensory sensitivities particularly well include M is for Autism, The State of Grace, and Water Bound.
Many autistic people take special joy in particular sensory experiences, including stimming: forms of fidgeting like hand-flapping, rocking, leg-jiggling, which can help regulate sensory overload, lower anxiety, and increase concentration. In Water Bound, Rikki stims for enjoyment by using her magical ability to manipulate water. She also immerses herself in water's sensory qualities to calm herself; her relaxation and intense enjoyment are vividly described, as is her love interest's enjoyment when he psychically shares her sensory experiences. In M in the Middle, M's teacher shows her Van Gogh's paintings Sunflowers and Starry Night:
"And I was struck. Just like being love struck. I could feel myself slipping...disappearing, sinking into these orange colours and fragile textures....Little electric explosions fire off all round my body. It's like nothing I'd ever seen before and my eyes were sharpened!" (211-212).
Some stories show characters using stimming as a strategy to help self-regulate sensory overload or manage distress. In On the Edge of Gone, Denise is trying to get her family onto a generation ship after an apocalyptic meteor hits the Earth, and is overwhelmed from multiple stressful situations:
"I'm rocking, I realize....moving like this helps keep the thoughts at bay, lets me focus on the shifting, roiling pressure and relief, like that of shrugging into a soft robe after coming inside from the rain, or turning down the volume after it's been screeching in my ears for hours" (356).
Some other stories with relevant stimming-as-coping-strategy scenes include Failure to Communicate and Queens of Geek.
All these stories show the autistic characters' sensory experiences and reasons for actions, either through narration by the characters themselves or evocative descriptions from someone who knows them well.
Language and Speech Differences
Autistic people can have various language and speech differences, including ongoing or intermittent difficulty or inability to speak, using speech in different ways, difficulty with auditory processing, and a preference for text over speech.
In "Difference of Opinion," Keiya, a janitor and a former anti-eugenics activist, uses a tablet to communicate, but is reluctant to communicate at all, both because it's difficult to organize her thoughts and because she's had her past work co-opted for non-disabled people's inspiration and edification. In "Iron Aria," the protagonist Kyru's difficulty with expressive speech is described in sensory, immediate terms: "The words clink and scrape, wrong angles and too loud against his teeth." In A Wizard Alone (New Millennium Edition), Darryl needs extra time to compose most spoken sentences; when the protagonist, Kit, takes on some of Darryl's characteristics as a result of magic, he has even more difficulty speaking, because he has Darryl's difficulties with speech but not Darryl's strategies for managing it. In Experimental Film, the autistic protagonist Lois's also-autistic son Clark uses echolalia to communicate: he "speaks mainly in echolalia; haphazardly grafting great chunks of memorized dialogue from movies, cartoons, commercials, and songs together to get a point across" (locations 266-267). In An Unkindness of Ghosts, Aster learned to speak late and speaks pedantically and precisely as an adult; she sometimes has difficulty speaking, and uses echolalia to help prompt herself back into speech. Many other stories show or reference ongoing or episodic speech difficulties or differences, including "Geometries of Belonging," "Grandmother-nai-Leylit's Cloth of Winds," Al Capone Does My Shirts, M in the Middle, "They Jump Through Fires," A Wizard Alone (New Millennium Edition), Failure to Communicate, and The Real Boy.
The State of Grace shows auditory processing difficulties visually on the page, during a date at a sensorily overloading bowling alley:
"I can't hear very well and now my brain's doing that thing it does where it sort of goes on a delay so when someone speaks I watch their mouth move but the processor takes a moment to translate the words and by the time I've caught what they mean they've started to say something else." (127-128).
Aster from An Unkindness of Ghosts has similar intermittent auditory processing problems.
Multiple stories reflect a common real-world autistic preference for text over speech. In Unauthorized Access, Aedo notes that typing would give her:
"a chance to get all the information in the right order instead of just blurting it out and hoping the recipient could extract the meaning from all the noise....If she sat down and thought through the sentences, she wasn’t talking fast enough; if she talked fast enough, her words were a mess. She was so much more comfortable in text, where latency was fine."
The autistic protagonists in Queens of Geek and A Boy Called Bat share this preference.
These stories use various techniques to show characters' interior experiences and the reasons their speech and comprehension differ, including direct explanation by the protagonist, other characters' observations, and the actual appearance of text on the page.
Social Skills and Abilities
Autistic people often have difficulty performing social interactions in ways expected of us. In addition to language and speech difficulties, we may be unable to get adequate information about what other people mean or want, may not know what responses are expected, or may be unable to enact those responses. Despite this, we can work quite hard to learn them.
In The Real Boy, Oscar, a young boy who's learned to interpret the nonverbal behavior and words of the people he lives with, has difficulty understanding people he knows less well:
"They said words they did not mean, and their conversations seemed to follow all kinds of rules–rules that no one had ever explained to Oscar. And if that weren’t enough, people talked in other ways, too, ways that had nothing to do with the things coming out of their mouths" (31).
This description makes his difficulty enacting socially expected responses completely comprehensible. Other stories that show similar issues: An Unkindness of Ghosts, The State of Grace, On the Edge of Gone. A Desperate Fortune, Harmonic Feedback, and Rogue reference extensive past support from family members in learning to interpret and respond to social situations, and in Failure to Communicate the protagonist has learned on her own through intensive observation.
Even when we do know what responses others expect from us, performing them can be intensely draining. Good portrayals acknowledge this cost. In The State of Grace, Grace describes the burden this imposes:
"[M]y head is full of all the things I have to remember when I'm being a person every day: don't be rude, don't stare, don't look blankly into space when you're not thinking anything, shut down the noises of everything talking, concentrate, hold it together, don't have a meltdown.…Oh God" (101-102).
Eye contact is a particular point of contention, because it's often uncomfortable and uninformative. In On the Edge of Gone, Denise's love interest asks whether eye contact hurts her. She responds:
"'Eye contact? No. Maybe it hurts for some people, but not for me. It's...' I've tried for years to put it into words. All the things I want to compare it to—music that's too loud, flavor that's too strong, images that flash too quickly—are different for other people too, so it never feels quite right....'I can do it for, like, half a second. Anything longer is just too much. Too intense. It scrambles my brain.' It's intimate, I think but don't say aloud" (232).
In A Rational Arrangement and A Boy Called Bat both autistic protagonists note that the information others expect them to get from eye contact simply isn't there. Other stories: M is for Autism, How to Become a Robot in 12 Easy Steps, Anything But Typical.
Although we're stereotyped as lacking empathy, many autistic people describe high levels of empathy, though often difficulty figuring out how other people want us to express it. In A Boy Called Bat, Bat wants to do something kind for his sister Janie, so he gives a pet baby skunk Janie's favorite pajama top so the skunk will develop a bond with her; when this upsets her, he suggests a way to make her feel better. In Rogue, Kiara uses her skills with video editing and setting scenes to music to evoke in her mother the empathy Kiara feels for her friend Chad, who has gone through a particularly devastating family situation. Other stories with good portrayals of empathy include Queens of Geek, Failure to Communicate, A Wizard Alone (New Millennium Edition), and A Desperate Fortune.
Sometimes, we develop unusual social strengths due to workarounds. We frequently interact with people whose communication is not intuitive to us, and consciously learn skills for it. Several speculative fiction stories extend this, showing an autistic character as the first person to figure out how an alien species communicates ("Touch of Tides," "Becoming," and Failure to Communicate).
In these stories, we see characters' social difficulties, the reasons for those difficulties, their consequences, and the skills they develop—as well as the effort that goes into learning and enacting those skills. When this is shown on the page, our social miscommunications are more comprehensible to neurotypical readers, something especially important in a real-world context where our social difficulties are sometimes misinterpreted as being uncooperative or unempathic.
Many autistic people derive intense enjoyment, and sometimes other benefits, from special interests in particular topics. These provide fun and respite in an often-unfriendly world, although neurotypical people don't always understand the extent to which they're important and valuable, and may try to take them away from us.
In Harmonic Feedback, Drea's special interest is sound design. She becomes absorbed in sounds and ideas when making music with her friends:
"My fingertips buzzed with anticipation, and I heard a billion different guitar melodies over the top....Every note made me shiver, each one building into something even more amazing...It tore at my gut and haunted my mind until all I wanted to do was get lost in it for hours" (110-111).
In Al Capone Does My Shirts, Moose's sister Natalie has a collection of buttons which she has memorized and loves to arrange; when a school takes them away from her, it's extremely upsetting to her. In The State of Grace, "You Have to Follow the Rules," and Queens of Geek, characters' special interests in real and fictional fandoms are fun, rewarding, and social.
In some cases, special interests help us make sense of the world. In Rogue, Kiara uses her special interest in the X-Men to help her understand other people, by mapping people and events onto ones she's read about. In You Look Different in Real Life, Rory explains why she finds Tudor-era history so compelling:
“Because it’s full of characters who are more interesting than the ones in any fiction book I’ve read, except these were real people. The more I learn about them, the more I learn about people in general” (109).
In "Difference of Opinion," the protagonist, Keiya, frequently references relevant lyrics from her favorite singer Nash, using them to characterize situations and to help cope.
Some special interests can facilitate a career, when economically valued and when we have the other skills or support needed to develop them. In "The Scrape of Tooth and Bone," Lillian uses her robotics skills to maintain robots used on fossil excavations; in A Desperate Fortune, the protagonist, Sara, works as a code-breaker; in This Alien Shore, Masada is an expert programmer, and his wife (also autistic) was a musician; and in Experimental Film Lois previously worked as a film critic and teacher.
The stories I've included for this series have many other examples of special interests, including birds (The Someday Birds), writing (Anything But Typical), rocks ("Inappropriate Behavior"), herbs (The Real Boy), and magic ("Geometries of Belonging"); in "Difference of Opinion" the protagonist has multiple special interests, including the fictional singer Nash and polar coordinates.
By showing what special interests do for us, good representation helps show how our interests are reasonable and valuable. It's important to note, though, that special interests don't have to lead to a career or social connections to have value—any more than hobbies do.
Other Common Neurological Differences
Earlier, I talked about sensory, language, and social differences, plus skills and special interests. Autistic people have many other common neurological differences, as well as co-occurring neurological conditions; often, these are underrecognized in real life and underrepresented in fiction.
Executive function refers to the many abilities needed for planning and carrying out tasks. This can include many daily life activities that neurotypical people have relatively little difficulty with, like remembering what you're doing, changing from one task to another, or keeping your space clean. I've only found a couple instances of executive function difficulties in stories with good representation: In "Inappropriate Behavior," Annie attempts to alert her therapist to an emergency situation; she has difficulty with working memory, and when he repeatedly interrupts her, she's unable to remember it long enough to keep bringing it up. In The State of Grace, Grace can't keep her room clean, to the point that the carpet can't be seen. When her grandmother helps clean out her room, they throw away trash bags' worth of junk.
Executive dysfunction is valuable to portray because it's often misunderstood as laziness or willfulness, rather than an inability that's intensely frustrating to us—a common misconception that results in counterproductive demands that we "just do" things that are very effortful or impossible.
Change is especially hard; routines and structures help. Change disrupts the structure and routines that help us manage executive dysfunction, sensory overload, and stress and anxiety. In A Wizard Alone (New Millennium Edition), a character notes that structure is important because it helps autistic people manage the pressure and intensity of daily life. In M is for Autism, M describes what happens when her timetable for the day suddenly changes: "A vast, scary nothingness is opening up ahead of me which I cannot measure or feel, like other people seem to" (63). It's valuable to portray why change is hard and how routines and structures help us, because in real life they are often treated as irrelevant and counterproductive attachments that we need to be broken of—rather than the coping skills that they actually are.
Motor difficulties are common in autistic people. These include difficulty initiating, planning, and coordinating movements, and difficulty imitating others' movements. In Failure to Communicate, the protagonist has both gross motor issues and fine motor issues; she can't tie a knot, has difficulty navigating uneven ground, and has to work very hard to learn the complex system of bows used by the culture she's being a diplomat for. The autistic character in "Geometries of Belonging" often falls and breaks things. In "Difference of Opinion," there's a toe-walking scene with socially trenchant commentary. Motor difficulties are also briefly referenced in Blind Lake, Al Capone Does My Shirts, A Wizard Alone (New Millennium Edition), and A Boy Called Bat, though they don't play a role in the story. Showing that these are neurological differences related to autism, rather than carelessness or laziness, is important.
Other neurological differences: The State of Grace references prosopagnosia (difficulty recognizing faces) and sleep dysregulation. Failure to Communicate..
There are some obvious reasons for this disparity. Just as with all Disabled people, workplace understanding and accommodations are a huge reason why Autistic people have such a hard time finding and keeping employment. Making it past an interview can be an insurmountable hurdle for many of us. While organizations and employer programs are popping up to help Autistic adults find and keep employment, with an estimated 50,000 new Autists entering the workplace every year, the few programs that exist cannot possibly keep up with the demand.
Aren’t There So Many Unemployed Autistic People Because of Those With Severe
In case you aren’t familiar with unemployment terminology, I should note that these unemployment rates for disabled Americans do not reflect whether some of us are too disabled to work at all. By definition, an unemployment rate only counts those who are ready to work and actively seeking employment. The Census Bureau divides the adult population into various groups, and people of working age are either counted as being in the workforce or not. Someone who is not in the workforce is not only not working but not even looking for work. The unemployment rate for any group of people—whether Autistic, Disabled, or the general population—is the percentage of the workforce who are not employed. Those too disabled to work are not in the workforce to begin with.
This also means that those Autistics who have become discouraged by the difficulty in finding employment and have given up looking for a job are not counted in these unemployment figures. Autistics who are living in institutions such as jails or hospitals are also not being counted in the unemployment figures. A much higher percentage of all Autistic adults than that 85% unemployment rate are not working for a variety of reasons. Those adults who are not institutionalized and who are prepared to work and could be in the workforce but have given up are called “discouraged workers.”
In the United States, the estimated number of discouraged workers in the general population is 451,000. The CDC has estimated an autism prevalence of 1 in 68. If that proportion also applies to discouraged workers, that would mean 6,632 discouraged Autistic workers. I couldn’t find a statistic for how many of those discouraged workers are Disabled or Autistic, but the actual statistics are so horrifying I don’t really need to add discouraged workers to those numbers to convey the employment crisis Autistic adults are facing.
So Why Are So Many Autistic Adults Unemployed?
The unemployment rate for all Disabled people is 10.5%. That rate accounts for stigma, lack of understanding, lack of appropriate accommodations, internalized and external ableism, plus all the reasons that lead to the 4.5% unemployment rate in the general population. The unemployment rate for Disabled people with non-autistic developmental disabilities is roughly twice that, at 21%. That leaves another 64 percentage points unaccounted for when we are looking specifically at Autistic members of the workforce.
I’d like to try to connect the dots a little bit by talking about a few of the special issues Autistic people face when we can’t find and keep employment as well as factors that drive some Autistic people from the workforce, converting them to discouraged workers.
Unusual Stigma Pattern
All disabilities come with social stigma and presumptions of incompetence. Autism comes with a particularly unusual set of assumptions that leave the Autistic person pressed from both directions into a pinched space no one can actually live or work in. This twin set of oversimplifications about who and how Autistic people are may be one of the biggest barriers to employment we face.
People who think autism is Rain Man will not even consider hiring us, because being Autistic means we’re obviously incompetent. If they meet us and we do not come across as incompetent, we’re obviously lying about being Autistic—not something likely to make an employer interested in hiring us.
People who think autism is savant geniuses like Dr. Virginia Dixon from Grey’s Anatomy and Dr. Shaun Murphy from The Good Doctor don’t understand why we need accommodations if we’re so brilliant and accomplished. They are disappointed, or even angry, when they learn we’re bright and motivated but just regular people. (My apologies to you if you actually are a real-life brilliant Autistic superstar like Dr. Temple Grandin, whose work in animal husbandry and slaughterhouse design is accepted internationally as the game-changing genius work it truly is. The majority of us are not.)
The vast majority of Autistics in the workforce fall through this “crack” between too-low expectations and too-high demands and either get turned away from employment or offered underemployment positions that do not pay enough money to support us. If we do not disclose our autism, we are viewed as “weird” or even “creepy” by potential employers and co-workers who can see our differences but can’t understand what is behind them. If we do disclose our autism, we face the strangely-shaped stigma that comes from not being well understood by a population flooded with “autism awareness” campaigns that deliver little useful content that could lead to genuine autism acceptance.
“Falling Off The Cliff” of Low Expectations
When Autistic people reach age 21, they age out of most available services. Some people call this “falling off the cliff” because of the drastic change one day (a birthday) makes is as sudden as hiking along a trail only to step off the edge of a cliff. When that cliff comes, it hits hard, especially for those who were previously underestimated and thus not prepared for employment. I have watched schools and families underestimate Autistic young adults and actively steer them away from an employment path. When those young adults age out of the system, there is nothing available to correct the skewed trajectory they have ended up on.
What happens to those who fall off the cliff? Some never enter the workforce in the first place. Some try and end up gravely underemployed. Some end up as discouraged workers. Some end up institutionalized. Statistics tell us that many end up dead from suicide. A study of newly diagnosed adults with Asperger’s syndrome found that 66% had felt suicidal, and 35% had attempted suicide. Of course that doesn’t count the number who attempted suicide and succeeded—we just don’t have statistics for that. We don’t know how many lives have already been lost, many before even being identified as Autistic and being counted among the 85% of unemployed Autistics and unknown number of Autistic discouraged workers.
Multiple and Sometimes Conflicting Needs
Not only do Autistic workers and Autistic would-be workers face the struggle for acceptance and the struggle for accommodation, but Autistic people experience a higher-than-average rate of other issues that affect employability such as gender and sexual identity issues and other, co-occurring disabilities.
An example from my own life: in addition to being Autistic, I have other disabilities. Two of them have access needs that conflict with each other in ways that significantly narrow the pool of jobs I am capable of pursuing. I have a circadian rhythm disorder called N24 that requires me to have a great deal of sun exposure in order to maintain a schedule compatible with work. At the same time, I have Ehlers-Danlos Syndrome which significantly limits me physically, ruling out jobs like park ranger, groundskeeper, or construction worker. I am not physically capable of the heavy manual labor that comes with outdoor jobs but an indoor job makes it impossible for my brain to keep accurate time, sending me into a schedule more fit for living on Mars. I can’t keep a job when I keep falling asleep in the middle of a sentence at work!
Draconian and Discouraging Social Security Rules
To continue with my own situation, I realized I would have to “think outside the box” when it comes to employment, so I have been self-employed for the last several years, working on building up my own business. I have run into many other Autistic people who are pursuing or attempting to pursue the same course themselves.
The main ingredients to self-employment are possessing a strong skill that there is also a demand for and having sufficient support to develop that skill into marketable products and/or services. Some governments even offer support, such as Australia’s New Enterprise Incentive Scheme. Autistic self-employment can get pretty far outside the box. For example, Brad Fremmerlid assembles IKEA furniture for a fee. That’s a business so many people are eager and grateful for that it’s surprising it didn’t already exist.
In my own case, I’ve come up against all the difficulties of starting and running one’s own business—including the fact that my business is still not fully independently supporting me—and something even worse: Social Security rules. The Social Security Administration wants disabled people to work. Their rules for those who pursue traditional employment are generous and easy to work with. Since most jobs provide regular paychecks, a person’s Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) is reduced according to what their monthly income is. (I apologize for focusing on the U.S. here. I don’t have experience working in other countries.)
As a self-employed worker, my income is irregular. One month it can be very high and another month it can be very low. My business expenses are also variable and sometimes the highs and lows of expenses do not come in the same months as the highs and lows of income. After some wrestling over the royalties from my memoir, No You Don’t, the Social Security Administration (SSA) and I came to an agreement: I would file taxes every year and they would adjust my benefits check based on my tax return amount.
As it turns out, they weren’t able to stick to their side of the agreement. I had a phone interview with the SSA late last year in which they insisted that I had to pay them back for an overpayment due to my income being too high. I tried to talk about the plan we already had in place but they would have none of it. They docked my SSI check.
Now that I have filed taxes, I see that not only did they not overpay me at all, I had a business loss last year. My business expenses were slightly higher than my business income. So now I am struggling along on a diminished benefits check and the same uncertain, variable business income and expenses. One thing has changed: once again, I am wondering why I am doing this? Why am I working so hard to build a business only to have to pay the government and have zero profits to live on?
This is not just my story. I have heard similar versions of this from so many other Autistics trying to start or continue their own royalty-based business for their writing, art, music, etc. I am dangerously close to leaving the workforce and returning to the ranks of the discouraged workers. After all, why should I try if the government is just going to break its word to me, and come take away what little I have?
What Help Is Available?
If you’re still with me, you’re probably reeling from the bleak picture I’ve painted. Fortunately it’s not all so grim! First, an 85% unemployment rate means that 15% of Autistic workers are employed! Okay, that’s a horrible statistic, but those people who make up that 15% need us to remember them and support them. Many of them are just hanging on by a thread and could lose their job any day. Many of them are stressed to the edge of breaking. They need more accommodations and more understanding. While we need to work hard to improve life for the 85% who are not succeeding, we can’t forget to take care of that 15% who have jobs.
When it comes to self-employment, in addition to government programs to encourage small businesses and the assistance and mentorship of offices of Vocational Rehabilitation, you can check out this mini-guide written by a self-employed Autistic for other Autistic people who are considering self-employment: Self-Employed Aspie. Cynthia Kim has more than one iron in the fire, since she wrote this series before starting the company you are probably more familiar with, but she’s also the entrepreneur behind Stimtastic. Another popular article written by an Autistic for other Autistics is Silent Wave’s essay: Self-employment for people on the Asperger’s/autism spectrum.
There are a few companies out there attempting to match Autistic workers with understanding employers. A big complaint a lot of people have about these companies is how computer-focused they are. There is an assumption that all Autistic people are great with computers and should go into computer work for a living. This is untrue, and focusing only on computer work leaves a huge number of unemployed Autistics out in the cold.
On the other hand, many Autistic people actually are good with computers and attempts to help reduce our unemployment rate had to start somewhere. Matching Autistics up with computer jobs was easy, and so between stereotypes and the path of least resistance, this is what we have the most of right now. I suggest we thank those people who are working to offer us computer jobs and ask if they have anything else. I am grateful that these tech companies exist and I will do all I can to keep getting the word out to people who might want to start another business to help us: we need a wider variety of job types available to us, please!
With that said, here are some of the groups that I’m aware of. Some don’t immediately look like job-finding organizations but have indicated in interviews that they do this work. When in doubt, contact a group to see if and how they can help you. In no particular order:
The Transgender Pride Flag By SVG file Dlloyd based on Monica Helms design [Public domain], via Wikimedia Commons [image: A flag with five horizontal stripes. The center stripe is white, flanked by two pink stripes, then a light blue stripe at the top and the bottom.
Everyone in my life knows that I’m transgender. Comparatively, very few people know about another major part of me: that I’m autistic.
At age twenty-one, I’ve come to understand that many of my young adult years have centered around trying to bridge the gap between my two ways of being: The way that I present myself to the world, and the way that I perceive who I am. I imagine that someday, hopefully soon, those two components of my life won’t feel far apart. And hey, sharing this essay might even help.
I realized I was trans when I was fifteen, but just a year before had come a revelation of similar scale and importance to me; my diagnosis of Asperger’s syndrome (which is now referred to as Autism Spectrum Disorder.) I experience many symptoms or “traits” of ASD, and I won’t mention all of them here, but it’s worth saying that my traits are not obvious to the untrained eye. Underneath the mask, though, lies a deep unsureness of how to regulate social interaction. To cope, I copy, or “mirror” other people in order to appear more socially fluent and less awkward. And it works. Many people close to me might say that I “blend in” very well, in more ways than one.
Now that I’ve been on testosterone hormone replacement therapy for close to three years now, my voice is deeper, my jaw is squarer, and I even have a bit of facial hair. When I tell people that I was assigned the sex “female” at birth, they often say something to the effect of “I would have never guessed!” This is typically meant as a compliment, but to me, it feels patronizing.
In an eerily parallel way, people react very similarly when I disclose to them that I’m autistic. In both scenarios, the disbelief is caused by the preconceived notions of what it “looks like” to be transgender or autistic. I credit the testosterone as the reason I am not read as female, and to some degree, I credit my socialization as a reason I am not perceived as autistic.
Professionals who diagnose Autism Spectrum Disorder are, in general, proficient at recognizing autistic traits in males. After all, the original model for autism was based on studies of mostly young boys. Some doctors are still catching up to being able to recognize such traits in girls and women, but people are becoming increasingly aware that autism presents itself differently in girls than in boys. For example, autistic girls are more likely than boys to be masters of “social camouflage,” which masks their traits of ASD.
So, where do I fit into this framework as a transmasculine person? Yes, I identify as more male than female. However, I lived the first eighteen years of my life as a girl, and so I believe many of my ways of interacting with the world are byproducts of being socialized as female. But when I walk into my doctor’s office, they will likely overlook the significance of my history because they see that I now present as male, despite having a lot of learning experience in the world as a girl.
I’m the same degree of socially clumsy and unsure as when I was presenting as female, yet doctors who are new to my case and doctors who don’t know me well are less likely to agree with my diagnosis. Doctors will commonly overlook my noticeable lack of eye contact and my significant difficulties with Sensory Processing Disorder (which is a common co-occurring condition in autistic people) or severely under-appreciate just how utterly exhausting it is for me to engage with others. Maybe they don’t understand how much my executive dysfunction holds me back. Maybe they don’t believe me when I tell them that when I’m alone, I often flap my hands when I get excited as a means of expression, or that I rock back and forth when I’m focused on something. All of these experiences are very real to me, and yet they seem invisible to so many medical professionals, simply because I don’t outwardly appear to check all the boxes while I’m sitting across from them.
In addition to feeling unheard and unseen, my autistic traits are sometimes swept under the clinical rug and regarded as symptoms of conditions such as depression or severe social anxiety. I suppose it’s an easy enough mistake to make, but such a misunderstanding of my neurotype can lead to misdiagnosis, which could potentially then cause doctors to prescribe medicine and recommend treatments that may do more harm than good.
After receiving handfuls of labels from the DSM as well as literally dozens of unsuccessful psychiatric medications over the years, I’ve learned that much of the way I am is not something to be treated with various therapies and pills. This is not to say that autistic individuals cannot experience things like depression or anxiety which may be very much relieved via therapy and/or medication. I have simply realized that in my specific situation, the best route from here forward is perhaps to make peace with and embrace the qualities that set me apart from neurotypicals, or those who don’t experience neurological differences.
The intersection of being both autistic and transgender is more common than one might think. While the dialogue around autism and gender identity is expanding, I have a bit of trouble figuring out where I fit into the whole picture. So, I decided to do my own research, and while this subject is a fairly new field of study, I found some pretty astounding statistics:
In 2014, a U.S. study of 147 children (ages 6 to 18) diagnosed with ASD found that autistic participants were 7.59 times more likely to express gender variance than the comparison groups. Another study, conducted in the UK in 2015, involved 166 parents of teenagers with Gender Dysphoria (63% were assigned female-at-birth.) Based on parents’ report of their children on the Social Responsiveness Scale, the study found that 54% of the teenagers scored in the mild/moderate or severe clinical range for Autism.
The relationship has only begun to be explored in research in recent years, but I’ve come to realize that there are a lot of autistic trans people out there in the world. As someone who very much values human connection and simultaneously struggles with it, I have to say that looking at those figures provided me an amount of comfort. I discovered that there are a lot of people just like me.
Being autistic and being transgender certainly each has their own respective challenges, though one that they share is a lack of societal acceptance due to stigma. Many people still believe that who I am as a transmasculine person is inherently invalid, just like many other people still believe autism is some kind of tragedy that is to be cured. In contrast, I feel very strongly that who I am as a person is heavily dependent on both my trans and autistic identities, and that they are beautiful things.
I would not be the person I am today if I did not have the incredible perspective that being transgender as well as being autistic has given me. My worldview has been altered by these two factors in particular in ways that I consider enlightening. Sure, I have tough days. But would I exchange all that I am in return for the promise of a simpler, more typical life? Most definitely not. Because after all, I’ve found that one of the best things about being dealt a different hand of cards is the unambiguous and fulfilling joy that is learning to accept oneself wholeheartedly.
Read Full Article
Read for later
Articles marked as Favorite are saved for later viewing.
Scroll to Top
Separate tags by commas
To access this feature, please upgrade your account.