Autistic Burnout: An Interview With Researcher Dora Raymaker

Dora Raymaker is a researcher, writer, and artist based in Portland, Oregon. She is co-director of the Academic Autism Spectrum Partnership In Research and Education (AASPIRE) with Christina Nicolaidis. AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

Fergus Murray interviewed Dora for Thinking Person's Guide to Autism.

Photo courtesy Dora Raymaker
[image: Dora Raymaker, a white person with
curly shoulder-length red hair with one teal
lock, glasses, and a steady gaze.]

FM: Could you summarise what autistic burnout means to you?

DR: The question evokes for me the impacts of autistic burnout on my own life, like "it means feeling my abilities and successes slip away and being powerless to stop it..."

But I think it is more asking, "how would you define autistic burnout?" I think that's an important frame for the rest of the conversation. We're still a finalized-analysis away from coming up with a definition grounded in research, but a fair start at an operational definition might be, "A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one's abilities and needs." In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

FM: There has so far been very little research on autistic burnout, although it is something autistic people have been talking about for a long time. Why do you suppose that is?

DR: Autism research, until fairly recently, has been mostly directed by non-autistic researchers, professionals, and family members whose priorities may be different from, or not fully inclusive of, the priorities of autistic people. Add on top of that a still-pervasive medical model of autism in the research world (disability as a disease to be cured, rather than disability as a divergence to be supported) which makes it even harder to get through the barriers between what we've been talking about wanting and what autism research is actually examining. This is a complicated topic I could probably spend the whole interview on, so I'll stop my geekery about it there, LOL.

Anyway, I'm hopeful that we'll have more research about autistic burnout (possibly disability burnout?) in the future. Autistic people have more voice in research than we used to, from the policy level to the participant level. Also I'm anticipating the surge of work into connected topics, such as camouflaging and mental health, will bring autistic burnout more into the awareness of the research community.

FM: How do you see the relationships between burnout and other experiences often reported by autistic people—meltdowns, shutdowns, sensory overwhelm, and catatonia?

DR: These other experiences are distinct states from burnout, but people report experiencing them far more often when also in a state of burnout. If we consider autistic burnout as a reduction in resources to cope with activities and environments that were already difficult—including by camouflaging and all the negative consequences of that—then it makes sense that a person would be left with less ability to tune out sensory stimulus, breathe through their trauma-reaction, or otherwise avoid the triggers for these other states. Nearly everyone we've spoken with in our research cited increased instances of these experiences as a consequence of the burnout.

FM: Have you been able to show what some effective strategies for coping with or avoiding burnout might look like?

DR: We asked people in our interviews what strategies helped them avoid or recover from burnout. We also looked at social media, where people have been sharing strategies. The community has also been compiling this information, and there are some good resources out there, like this guide from Autistic Women and Nonbinary Network (AWN). I recently did a talk at Seattle Children's Hospital on the research, and the slides from that talk also list a number of the strategies. You can get the slides here, and the talk should be available on YouTube at some point. Until then, it was recorded on Facebook, and you can view it there.

The tl;dr version: being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.

FM: Many autistic adults report that they only realised they were autistic (or only received professional help) after experiencing burnout. Some may have talked to specialists before this, and been denied a diagnosis because they were not seen as sufficiently impaired. Do you think it might help some people to avoid burnout, if it was easier to be formally identified as autistic without insisting that someone's autism must 'limit or impair everyday functioning'?

DR: Yes, absolutely. Even just realizing that you're probably diagnosable could be helpful, because it gives you access to community wisdom, and the strategies people use.

However, if the dynamic of autistic burnout really is related to spending more resources coping than one has, I'm not sure the real leverage in avoiding burnout resides with the autistic person alone. Especially because a number of the strategies people have to avoid or recover from burnout involve being able to act more autistic, being accepted as autistic, and getting support and accommodations--all things that require the cooperation of others. So we need to also be looking at ways to make neurodivergence more accepted and less stigmatizing, as well as ways for services to become more inclusive of supporting autistic people who appear to be "functioning well." Knowing you're on the spectrum, alone, isn't, in my opinion, going to fix this.

FM: Some have suggested parallels between autistic burnout and Chronic Fatigue Syndrome. Do you think this is likely to be a fruitful connection to explore in future research?

DR: I'm not a clinician and don't have interest in clinical research. However, there are clinicians like Christina on my research team. Her impression from descriptions of autistic burnout are that it's likely a different thing from CFS (although one could certainly be experiencing both), and that addressing autistic burnout directly is probably going to help more people than looking for a possible relationship between it and CFS. That said, it could be research for someone else with interest in that area to explore.

FM: You’ve completed the first stage of your study, interviewing ten autistic people about their experiences of burnout. Did any surprising themes emerge in these interviews?

DR: Since many of the people on our research team have been part of the Autistic community for years where autistic burnout is frequently discussed, I’m not sure that there were any particularly surprising themes to us. One of the themes that might be most surprising to the general public is that some things they might think are good for autistic people—learning to emulate mainstream social behavior, appearing to “overcome” autistic traits, things like that—may actually be hurtful in the long-term. I think it makes sense if a person thinks about it—if you were asked to pretend to be something you’re not constantly out of fear of negative, possibly life-threatening consequences, and it was very difficult to do, how long could you keep it up? I think it might surprise some people how close autistic burnout is in a lot of ways to professional burnout, or to caregiver burnout, or something else that they might have experienced themselves.

FM: You plan to develop tools to measure burnout in the second part of your study. How might you go about measuring something like that—and what sorts of uses do you foresee for it?

DR: Measurement is a whole field of research in itself. This study is using a mixed-methods approach to create a survey. That means first we’re doing this qualitative part to understand what ideas, or “constructs,” might need to go into a survey to measure autistic burnout. We’re putting together the symptoms of burnout that people talked about in their interviews, on the blog posts, in the community to create a draft of that measure. Then we’ll be trying the survey out with a small number of participants. They’ll take the survey, along with some additional surveys, and be able to give some written feedback. We can then run statistics on the results to start validating the measure. We can learn things like, does the survey contain the right constructs? Do the sections of the survey group together well? Is there an expected relationship between scores on the autistic burnout survey and another survey; for example do people with high burnout scores also have low self-efficacy scores (since people in our interviews talked about a loss of self-confidence when in autistic burnout)? These are all parts of validating a measure. Then we refine the measure and test again.

As far as uses, there are many. Two big ones related to the work I’m most interested in are: 1) It can be used to tell if someone is experiencing autistic burnout, which could then change how services or supports relate to that person; 2) If anyone creates an intervention, or a program of some sort, to help prevent or relieve autistic burnout, a measure will be needed to know if the intervention is working; in other words, you need to be able to measure it to know if you have changed it.

FM: What’s next for AASPIRE?

DR: A lot! We have multiple projects, including our ongoing work on issues such as healthcare and employment, and a new branch of AASPIRE starting up in Australia. You can visit aaspire.org to see some of what we’re up to. As far as the burnout research, the next steps after finishing up this study are 1) to publish papers in the academic and clinical literature to start getting the word out, and 2) to apply for new funding to further test the measure and begin exploring further how autistic burnout impacts people’s lives, so that we can start working toward creating an intervention to prevent or relieve it—as well as giving others tools to do the same.

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The Protective Gift of Meltdowns

Maxfield Sparrow
unstrangemind.com

Photo © 2017, Maxfield Sparrow
[image description: a turtle in the middle of the road on a hot, sunny day.
His skin is dark with bright yellow stripes and his shell is ornate,
covered with swirls of dark brown against a honey-yellow background.
The turtle is rushing to get across the street and his back leg
is extended from the speed and force of his dash toward freedom.]

I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time—sometimes minutes, but just as often entire days—afterward, when everything is too intense, and I am overwhelmed and exhausted and have to put my life on hold while I recover.

I hate the embarrassment that comes from a meltdown in front of others. I hate the fear that bubbles up with every meltdown. Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

We Autistic adults and teens put a lot of energy into figuring out what will lead to a meltdown and working to avoid those things whenever possible. Parents of younger Autistics also put a lot of energy and work into figuring these things out, both to try to keep triggering events out of their child’s life, and to try to help their child learn how to recognize and steer around those triggers themselves. Outsiders who don’t understand autism will make accusations of being overly avoidant and self-indulgent, and accuse our parents of spoiling and coddling us.

I have written about how shutdown can alter brain function in unwanted ways. Meltdowns also have their dangers, and can alter brain function over time. A meltdown is an extreme stress reaction, and chronic stress can damage brain structure and connectivity.

But meltdowns serve a purpose, just as another unpleasant experience that can also re-wire the brain if it continues chronically and unabated—pain—also serves an important and very necessary purpose.

Pain is an alarm system that helps us avoid bodily damage, and urges us to try to change something to protect our body. While pain is usually unwanted and something we seek to avoid, without pain we would not live very long because we would not have such a strong drive to eliminate sources of damage to our bodies.

Meltdowns are alarm systems to protect our brains.

That idea is so important I gave it its own paragraph. And I’ll say it again: without meltdowns, we autistics would have nothing to protect our neurology from the very real damage that it can accumulate.

So often, I see researchers and other writers talking about meltdowns as if they were a malfunction or manifestation of damage. I strongly disagree. It is easy for an outsider to view a meltdown that way, because all they see is an unpleasant outburst that makes their lives more unpleasant or difficult. They see someone who appears to be over-reacting to something that they don't consider such a big deal. They see someone "immature," someone who needs to grow up, snap out of it, or get a “good spanking” to teach them to behave.

When a person doesn’t themselves experience the hell of having a meltdown, that person can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

Let me ask you something (this is a thought experiment and you don’t have to actually do this, but you might understand me better if you follow along physically): Take your finger and poke the softer flesh on the inside of your thigh with it so that you are pressing the tip of your fingernail into your thigh. Don’t actually damage yourself! You’re just looking for a reference sensation. Poke it about as hard as you might press a button to ring someone’s doorbell.

If you have long, sharp fingernails that might have hurt a little bit (I hope you were careful. The goal here is not to injure yourself—just to create a physical sensation.) It was a quick poke, so it probably didn’t even leave a mark behind, no matter how long your fingernails are.

Now do the same thing to your gums, either above or below your teeth, in that area between your teeth and the inside of your lips. Oh! You couldn’t even poke it as hard, could you? (Do be gentle with your gums, please. I repeat, this is not about harming yourself. You don’t even have to poke yourself at all if you don’t want to. You know your thighs and gums.) You know, without lifting a finger, that I am telling you the truth when I say your gums are much more sensitive than your inner thigh.

And you are not “over-reacting” when you have more pain response in your gums than in your thigh, right? It’s easier to hurt your gums, so your reaction to the same stimulus is much more intense when it is applied to your gum than to your thigh. You are not self-indulgent or spoiled. You don’t need a good spanking to get over how sensitive your gums are. You just need to take extra care that things don’t poke you in the gums.

So what’s my point? If you are not Autistic—and even more so if you are pretty close to neurotypical —your neurological wiring is more like your thigh. Life pokes at you a lot, and you don’t even notice it. Much of life’s poking is fun for you. Some pokes are less recreational, but present satisfying challenges. So when you see an Autistic person having a meltdown you might not even recognize the pokes they have been processing all day long, because you as a non-autistic person don’t even feel them.

But our Autistic neurological wiring is more like your gums, except not even that predictable. Some of our senses may be “hyporesponsive,” and we need to stimulate them to be aware that they are even functioning. Some of us spin around, or pace in circles. Some of us move our hands or fingers in ways that make us feel better. Some of us blast loud music with a heavy bass and drum component to it. Some of us rock back and forth. Our wiring demands more input than the world’s regular pokes can give us.

Some of our senses are “hyperresponsive”  and we need much less stimulation. Life’s pokes are like fingernails grinding into our gums and we need to make it stop because we cannot bear the pain. Loud sounds or high-pitched sounds get to some of us. Others are overwhelmed by the struggle to understand speech when more than one person is talking at the same time. Some can’t stand textures of fabrics, or foods.

Most Autistic people I know experience a complex mixture of hyporesponsiveness and hyperresponsiveness. Most have some senses that are both hypo and hyper responsive, changing over time. I can’t give you any single idea of a sensory pattern for an Autistic neurology, because we each have our own combinations of needs.

Normal Human Variation Includes Variant Emotional Sensitivity Levels

But when it comes to meltdowns, it’s not just sensory input (or lack thereof) that will set off an Autistic’s neurological warning system and throw us into meltdown. What inspired me to write about this topic was reading something I had written last year, after spending a few months living in an emotionally abusive situation. The man I was living with figured out very quickly how to manipulate my compliance triggers; he even commented specifically on how easy it was for him to physically subdue me once he spotted the compliance “fish-hooks” that childhood had left embedded in me.

I’m not going to go into much detail about what he did, for the same reason I shy away from going into much detail about my decade of childhood therapy: I am working on removing those hooks from my flesh. The last thing I want to do is instruct others as to where those hooks are embedded, and how to use them to steer me like a puppet.

My only point in mentioning my abuse is that I realized—after the fact—that my meltdowns had been sending me a very clear message, one I should have heeded immediately. Instead, I did what I always do: I interpreted my meltdowns as a sign of how damaged I was, and how much I needed help to gain self-control. Most of my life, I’ve allowed lovers to convince me to try to medicate my meltdowns into submission. I hated those meltdowns, because they seemed to illustrate how flawed and awful I was. My thought process went like this: I melt down because I’m Autistic and meltdowns are frightening and horrible and who would want to be my romantic partner? I can’t blame people for treating me badly and wanting to get away from me, because look at these meltdowns!

My experience last year helped me to finally realize that I was looking at things backwards.

I don’t melt down because I’m Autistic.

I melt down because something in my environment is intolerable, and I am having a normal reaction of pain and/or anxiety. That pain can be from something physical, like an intolerable temperature in the room or a sound that is piercing my eardrums and making me nauseated. Or it can be something emotional, like internal feelings of frustration or external abuse.

Everyone has meltdowns. It’s not just an Autistic thing. But our wiring is different, just like the wiring is different between your thighs and your gums. Some things that make neurotypicals meltdown don’t bother me. A whole heaping lot of things that don’t bother neurotypicals make me meltdown terribly. I’m not deficient in some way; I’m wired differently.

Meltdowns Protect Us From Harmful Situations and People

One of the things I learned last year is that, even when I can’t recognize abuse because I have alexithymia, and even when I can’t recognize abuse because my compliance training is kicking in full-force, my body and nervous system will send me the message via repeated meltdowns.

What I wrote a year ago:

"If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up. 

"An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same Autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns. 

"All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome. 

"I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner. 

"I finally realized all this today. Everything suddenly connected. 

"And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.

So… I still do hate meltdowns. More specifically, I hate having meltdowns. They are hard on me, physically and emotionally. They are embarrassing, messy, frightening.

But I am grateful that my body has a way to tell me when I’m in a bad situation, even if my mind is not capable of figuring it out yet. I vow to respect and honor my meltdowns. This is not the same as excusing my behavior. This is not the same as giving myself free reign to do whatever, whenever.

I still want to do whatever I can to avoid having a meltdown. I still want to work on my ability to detect a meltdown on the horizon, and remove myself to safety before things go too far.

But I also vow to listen to my meltdowns and pay closer attention to my triggers. Meltdowns teach me what my nervous system can handle and what is too much for me. Meltdowns teach me how to take care of myself. Meltdowns teach me what my nervous system needs. Meltdowns highlight areas of my life that are not on track.

Sometimes my depression shows me that something is wrong in my life, but sometimes depression is just like a wildfire, burning out of control. The same is true of my anxiety. But I have learned that meltdowns are always highlighting something I need to address.

Meltdowns protect me. Some aspects of my neurology make me more vulnerable. Some remnants of childhood experiences leave me more vulnerable. Meltdowns fill that gap and send me messages about my life that can help me protect myself.

While I will never enjoy having a meltdown, I promise I will always value the protective gift meltdowns bring me

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What Good Representation of Autistic Characters Looks Like, Part I: Interiority and Neurology

Elizabeth Bartmess
elizabethbartmess.com

This is a three-part series. Part II explores Diversity in Autistic Characteristics and Demographics. Part III explores Setting, Plot, and Character Growth.

"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

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.

Special Interests

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 and "They Jump Through Fires" both portray grieving in ways that don't necessarily match what's expected of us. The protagonist in Failure to Communicate has difficulty remembering to eat and eating enough, causing the captain of her ship to explicitly assign people to make sure she at least eats protein bars. A Wizard Alone (New Millennium Edition) references intense emotions, and hyperfocus and burnout are both important to the storyline. On the Edge of Gone and "Difference of Opinion" both show self-injury as a consequence of severe stress.

There are many other autistic characteristics I haven't (yet) found good representation of, and I'll mention some on Friday.

Co-Conditions: Various neurological and psychiatric conditions are more likely in autistic people, such as synesthesia ("Touch of Tides," "Becoming," Failure to Communicate), OCD (The Someday Birds), anxiety (vividly described in both Queens of Geek and M is for Autism), depression (Experimental Film, "How to Become a Robot in 12 Easy Steps"), and ADHD (referenced in Harmonic Feedback). Representing these is valuable both because it reflects real life and because autism is commonly overlooked in favor of other conditions by healthcare providers (though the reverse sometimes happens, too). These aren't the only common co-conditions, and I'll mention some of these on Friday as well.

Intellectual disability is common in real life, though rarer in good representation. I could not find good representation with explicitly intellectually disabled autistic characters, although there are several characters who may be, including Natalie from Al Capone Does My Shirts, Kami from "Grandmother-nai-Leylit's Cloth of Winds," and Clark from Experimental Film (who his mother Lois mentions can't be assessed because he's not currently able to take standardized tests). Good representation with intellectually disabled characters is important because in real life, intellectually disabled people's experiences are often discounted by other people, despite being as real and important as everyone else's experiences.

Conclusion, And a Note About Voice and Detail

Today I've talked about how good representation portrays our interiority, including how our experiences influence our actions, and how those experiences build up over time and affect who we are and how we approach situations.

Many of these stories are narrated in first person, in realistic voices. The characters primarily describe their experiences rather than describing themselves as they would be seen through a neurotypical person's eyes. This helps avoid the phenomenon where characters perform autism for an assumed-neurotypical audience, whether through a narrative style that focuses the audience on the character's otherness at the expense of the story or by being turned into a self-narrating zoo exhibit. It's realistic, and it helps autistic readers connect with the characters, too.

Often stories with good representation do include more detail when describing autistic characters' experiences and actions than when describing neurotypical characters' experiences and actions. This helps neurotypical people understand us better; it also helps build autistic readers' trust and let us see ourselves reflected and understood. In an ideal world, we wouldn't need any extra detail, because autistic people would already be understood, and we'd be able to see ourselves reflected in real life. But we don't live in that ideal world; we live in this one.

An important caveat: in real life, giving this level of detail is effortful and sometimes impossible. We might sometimes decide to do so anyway, but we shouldn't be required to justify our actions, disclose very personal details, and be extremely skilled at explanation to receive support and understanding.

In Part II, I'll talk about how autistic people vary both in autistic traits and demographic characteristics, how other people respond to us, and how that affects us. In Part III, I'll talk briefly about how everything I've discussed relates to setting, plot, and character growth. I'll also give some links for writers, a list of some real-life things often missing from fiction, and a list of books and short stories I've mentioned.

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