Thursday, March 1, 2018

What Good Representation of Autistic Characters Looks Like, Part II: Diversity in Autistic Characteristics and Demographics

Elizabeth Bartmess 
elizabethbartmess.com

This is a three-part series. Part I explores autistic interiority and neurology. Part III explores Setting, Plot, and Character Growth. 

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.

Demographic Variation

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 Mexican descent and part of the story involves family folklore. In A Boy Called Bat, the illustrations show Bat's father as Asian (and he's confirmed to be of Chinese descent in the sequel, due out later this year); in A Wizard Alone (New Millennium Edition), the autistic character Darryl is black; in The Someday Birds, Charlie's mother was Mexican. Two stories include an all non-white cast: "Grandmother-nai-Leylit's Cloth of Winds," noted in the author's story notes, and The Real Boy; the author notes in this comment that the characters are Middle Eastern and North African.

Sexual orientation: The set of studies I mentioned above for gender identity also looked at sexual orientation and found that about 70% of autistic people identify as non-heterosexual (with about a third of that 70% identifying as asexual), compared to about 30% of non-autistic participants.
A number of stories include autistic characters who are or were in a same-sex relationship. In "The Scrape of Tooth and Bone," there is a romantic subplot between the female autistic protagonist and another woman; in "They Jump Through Fires," the female character is mourning the death of her girlfriend; in This Other World, the female autistic protagonist is married to a woman; in Failure to Communicate, the female protagonist is attracted to both a male character and a female character; and in "Difference of Opinion," the autistic protagonist has had a past relationship with a man and a current one with a woman. "Carry the Ocean" has two gay men in a relationship, with homophobia as a major theme.

Several stories feature autistic characters explicitly on the asexual spectrum: In Kea's Flight, an autistic secondary character is an asexual lesbian in a romantic relationship with another woman, with a brief subplot surrounding her realization of her asexuality. In "How to Become a Robot in 12 Easy Steps," the protagonist self-describes as "probably asexual." In Iwunen Interstellar Investigations, one of the nonbinary characters is demisexual.

Other things: Various other demographic characteristics influence autistic people's experiences; here are just a few.

  • Age: In real life, older autistic people are often undiagnosed and invisible. This Other World features an autistic menopausal woman; in Experimental Film, the autistic protagonist is 44. In Harmonic Feedback, the doctor Drea sees mentions that he has other patients "of all ages—children to grandparents" (67; also, Drea's grandmother, though not explicitly autistic, shows some autistic traits).
  • Parenthood: Lois in Experimental Film is an autistic parent of an autistic child, which plays a role in the story; in Iwunen Interstellar Investigations, the protagonist has an autistic child. In This Other World, the protagonist has a non-autistic adult son.
  • Cultural setting: The contemporary real-world stories I found were all in Westernized settings, which at least partly reflects my inability to evaluate stories in languages other than English. (This is harder to judge for SFF stories.) Two of the SFF stories feature autistic characters living and working in cultures other than their culture of origin: This Other World and The Book of How to Live.
  • Socioeconomic status: Two contemporary real-world stories feature low-socioeconomic-status characters: Harmonic Feedback and Rogue. The SFF stories are sometimes harder to characterize—it's not always clear what the protagonist's situation is or what the surrounding economic system is like—but in "Difference of Opinion," Keiya works a menial job as a janitor; in Failure to Communicate, after leaving home but before the events of the story, Xandri spent a number of years living on the streets. (Also, although I'm hesitant to include this in with "socioeconomic status," in An Unkindness of Ghosts, Aster is a slave, as is Oscar in The Real Boy.)
  • Physical disability: In Experimental Film, Lois has chronic pain; in This Other World, Vonika is waiting on a knee replacement.

Conclusion

Autistic people vary. A given autistic person will have their own individual configuration of neurological differences, associated life experiences, and related skills and strategies; they will also have a particular life history surrounding their and others' knowledge (or lack of knowledge) that they're autistic, which may or may not include a formal diagnosis and/or misdiagnoses. They will also have particular demographic characteristics that can influence their experiences in a variety of ways, including via other people's responses. All this influences how we think about ourselves, how we think about others, how we approach new situations, and how we respond to those situations.

Autistic characters will vary in autistic characteristics, life history surrounding whether they know they're autistic (and sometimes diagnosis), and demographic characteristics and related life experiences. Not all of this will be relevant to a particular story, and not all of it has to be planned out or made explicit in the story, but good representation will usually specify—often but not always explicitly—the ones that are relevant, and show their effects realistically.

In the third and final part of this series, I'll bring all of this together with setting, plot, and character growth, along with the promised links for writers, list of some real-life things underrepresented in fiction, and a list of books and short stories.