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Autistic Representation and Real-Life Consequences: An In-Depth Look

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Stereotypes affect how other people think about and treat autistic people. Fictional portrayals of autistic characters often reflect and amplify these stereotypes. There’s no research on how fiction affects real-life stereotypes about autistic people, but we know fiction affects attitudes toward people with mental illness, and television shows with positive gay characters increase support of marriage equality.

Fiction very likely influences attitudes toward autistic people too—meaning that harmful portrayals can have damaging effects on actual autistic people, whereas more realistic, richer portrayals can have positive real-world effects. Portrayals of autistic characters also affect how real-life autistic people view ourselves: Are we shown as real people with both strengths and difficulties, people with meaningful internal experiences who undergo realistic character growth, and who are as human and as valuable as non-autistic people?

In this article, I review common tropes in fiction (mainly kid lit) that mirror and reinforce real-life stereotypes, with links to book reviews or commentary, to blog posts describing relevant real-world experiences, and sometimes to news stories or research. (Note that these are by many different people, and I don’t always agree with every point they bring up or every way they talk about autistic people or disability in general.)

Although we lack research data on how common these issues are in the real world, in my experience they’re common in both life and fiction (though there are some great exceptions!). They are also not exclusive to autism, or to kid lit; although that’s my focus for this article, there are common issues in other genres, including for many other disabilities.

If you’re not already familiar with autism, here’s a good starting point. Note that online autistic communities usually use “neurotypical” to mean “non-autistic,” which is how I use it here, although technically it refers to people who also don’t have any other neurological conditions (for example neurological conditions such as hydrocephalus, mental illness, dyslexia, et cetera).

I’m going to talk about three major problem categories that occur both in fiction and in real life: being described or treated as less real than non-autistic people; autism being shown as a debt we have to repay to others around us; and our being portrayed as only looking or acting certain ways. Then I’ll talk more about some of the real-world outcomes of these problems, and about some ways fiction can help respond.

Problem Category 1: We are shown as less real than other people

There are two ways that autistic characters are portrayed as less real than neurotypical characters: By being included only to affect the other characters or the reader, as opposed to being shown as characters who the reader could potentially connect or identify with, and by having their internal experiences downplayed or minimized.

Problem 1a: Our role is to affect other characters or entertain the reader

In kid lit, autistic characters often exist to affect other characters, for example to show what having an autistic sibling is like, to let characters “earn goodness pointsby being kind to us, or to educate the (assumed non-autistic) reader. We are also sometimes used to provide entertainment via amusing social misunderstandings.

This reflects real-life attitudes toward autism. We are often made invisible except when affecting other people. Many autistic people I know express frustration at being spoken over: family members’ voices are consistently prioritized over those of autistic people, and are even taken as more accurate descriptions of our inner experiences than our own voices. The most well-known autism organization, Autism Speaks, was founded in 2005 but included no autistic people on their Board of Directors, despite widespread criticism, until a decade later, following a round of negative publicity not in response to activists but in response to a non-autistic author whose voice was heard in a way our own was not. Autism Speaks fundraises by advertising our existence, but only 3% of that goes to providing services for autistic people. We are also used for goodness points: Some parenting communities characterize mothers of autistic children as heroes, where the autistic child’s role is to be the burden that makes the mother heroic. Parents may video or live-tweet our meltdowns to get sympathy or support or media attention. Finally, both our social mistakes and people’s amusement at our expense often cause us shame and anxiety, and may remind us of frequent past instances of being laughed at.

In truth, though, our autism does not exist “for” anyone; and neither is it targeted at anyone, either to hurt or to help. It affects both us and others, in both good and bad ways, and it doesn’t make us less real or less human.  It can be shown similarly in fiction; we can be active characters with agency, instead of being included to make other characters sympathetic or to provide education or entertainment. While autism shouldn’t be minimized—it’s a disability, not a cute personality quirk, and that’s important—we can be shown as real people in our own right.

Problem 1b: Our actual experiences are downplayed or ignored

In kid lit, often our internal experiences are ignored in favor of showing “behaviors.” Our emotional responses (including to abuse) may be portrayed as muted, distant, or rarely shown. The false, and harmful, implication is that our internal experiences are unimportant or less intense, and therefore mistreatment matters less.

In real life, our internal experiences—especially of sensory processing issues and anxiety—are the exact opposite. They can be painfully intense and overloading. Executive functioning issues make the world harder and more stressful. Other people, including therapists, often ignore these internal experiences to focus on normalizing our surface behaviors, which neglects the reasons we have those behaviors—often they help reduce anxiety or sensory overwhelm. Some behaviors are very difficult to suppress, and suppressing them doesn’t make the reasons they happen go away. In fact, suppressing them can actively interfere with the ability to pay attention and learn.

When people disregard our internal experiences, they may justify treatments for autistic kids that they wouldn’t for neurotypical kids, including compliance training that makes us vulnerable to abuse. Ignoring or downplaying internal experiences can lead to ignoring or downplaying the effects of abuse, such as dismissing the effects of bullying because they think it is less hurtful to us, even though bullying is common and strongly related to autistic kids’ 28 times greater risk of contemplating or attempting suicide. Discounting internal experiences can also lead to things like it being seen as acceptable to talk on video, in front of your child, about how you’ve wanted to murder them.

Although some books do a good job showing autistic characters having internal experiences, when they don’t, it’s worrying. Here is some advice on more effectively writing internal experiences.

Problem Category 2: Autism is presented as a debt we have to repay

The combination of these—the idea that we are supporting characters, less real, with less meaningful internal experiences, whose behaviors are odd and should be corrected—can lead to the idea that autism is a debt that autistic people have to make up for, either by becoming more neurotypical or by having a special talent to make up for being disabled. This debt is often shown as interpersonal: We make things harder for other people, and so to be taken care of or put up with (even as children!), we have to make it “worth it” for other people.

Problem 2a: Character growth is shown as becoming more neurotypical

In fiction, character growth is often presented as acting less autistic or even being (unrealistically) cured at the end of the book.

Similarly, in real life, the pressure to look less autistic is strong and insistent. It includes both authority-endorsed treatments and unrelenting social pressure. Consequences include trauma, burnout or regression, reduced learning from suppressing stimming, and (if you are able to eventually look non-autistic enough) being incorrectly considered recovered and then penalized by having needed services removed. Anecdotally—I don’t know of any research on this—post-traumatic stress symptoms from abuse for being different and/or forced to hide it seem nearly universal among my autistic friends.

Autistic people are put under substantial pressure to pass, whenever possible. This pressure involves both a stick and a carrot. The stick is being treated as less human if/when you can’t pass. The carrot is an ongoing reminder of the stick: being treated as human if you can pass consistently enough and avoid expressing needs; access to education and employment; and leaving or avoiding institutionalization.

When driven by abuse and fear of dehumanization, acting less autistic doesn’t feel like a triumph; it feels coerced. Learning to consistently force yourself beyond your limits and being punished when you don’t is not character growth. It is character harm.

Fiction can show good character growth for autistic characters. For example, it could show us gaining coping skills, learning to accept ourselves, and learning how being disabled affects us and what it means. (Note that we can grow in some of the same ways that non-autistic people do, too—it doesn’t all have to be about autism!)

Problem 2b: Mystical disability to compensate

There’s a second way we’re shown as making up for autism: having a mystical disability or special talent to entertain the reader or to serve as a plot device.  This sends the message that we can’t just be people, like non-autistic characters can; we have to compensate for disability by providing value.

But in real life, we have no psychic powers. We are sometimes skilled or talented, sometimes exceptionally so, and when we are lucky we have the support necessary to actualize these skills. But not all of us have skills that are considered sufficient to “make up” for disability, or have the support needed to develop those kinds of skills, as can be seen by (for example) our very high unemployment rate.

This is another area where fiction can help: By showing realistic skills and talents, including ones that are average, to reduce the perception that autistic people who don’t have a special talent are failing to hold up their end of a bargain.

Problem Category 3: We’re shown as looking or acting only certain ways

Autistic people vary a lot: “If you’ve met one autistic person, you’ve met one autistic person.” Stereotypes about what autistic people look like result in underdiagnosis for anyone who doesn’t match those stereotypes, and may reduce access to services, understanding, and acceptance. Because we have limited representations of autistic people in fiction, individual portrayals carry a lot of weight.

Stereotypes fall into three basic categories: Functioning labels, demographics, and symptoms and talents.

Problem 3a: Functioning labels

Kid lit often perpetuates—inadvertently or not—the idea that autistic people are “high” or “low” functioning, and reinforces harmful beliefs associated with those stereotypes. Autism isn’t actually a unidimensional spectrum; instead, it’s a “combination of impairments in cognition, communication, sensory perception, and movement [which] combine in different ways.” Someone can be good at some things (like writing college papers or speaking) and unable to do others (like grocery shopping, sustaining employment, or paying bills). Functioning labels are also often based on how neurotypical we appear on the surface rather than the capacities more relevant to our ability to work or manage our daily lives. What is being objected to here is not the labels; it’s the concepts, and specifically that the concepts are both inaccurate and grounded in how much inconvenience we appear to create for other people.

In kid lit, “low-functioning” characters—often young and less verbal—are frequently objects who exist solely to affect other characters, such as by embarrassing their siblings or providing goodness points to others. If talented, it may be shown as an extreme talent or psychic ability. In real life, people labeled “low-functioning” often have talents and skills ignored or unsupported, receive excessively low expectations and an absence of respect, and are particularly likely to be portrayed as burdens.

Characters written as “high-functioning” may have their disability reduced to personality quirks, or may have their autism erased. Verbal, introspective, and/or social characters may be marketed as only having “a touch of Asperger’s,” described as having something similar to autism, or have their disability go unnamed. That may be an attempt by the author to defend against accusations of misrepresentation, but is harmful for various reasons, including reinforcing the idea that people labeled “high-functioning” can stop being disabled just by trying hard enough, without receiving appropriate support or accommodations, which is unrealistic and harmful.

Fiction can also reinforce an ugly hierarchy where people labeled “high-functioning”/Asperger’s look down on people labeled “low-functioning”/autistic. This happens in real life, too, and doesn’t help anyone. (I recommend the comments on that last link for a nuanced discussion.)

Many people have written more about problems with functioning labels.

Problem 3b: Demographics

The real-life stereotype of autism is a white, middle-class, heterosexual-or-desexualized, cis boy (or sometimes adult male). Fiction parallels these stereotypes, with the exception of gender: Although in real life autistic girls and women are underdiagnosed, multiple kid lit books have female autistic secondary characters or female autistic protagonists, which is great! However, I know of no trans and/or queer autistic characters, despite knowing many real-life autistic people who are one or more.

In real life, a similar problem exists with demographic stereotypes.  We are often thought of only as kids; it’s difficult for adults to get diagnosed, and we are barely taken into account when it comes to research funding allocation and collection of prevalence data. This may seem an odd thing to critique for kid lit—but if there are non-autistic adults in kid lit, why not autistic adults? When disabled kids never see adults with similar disabilities, they may assume that their only options are to become nondisabled (which may be impossible), or to be institutionalized.  People can become extremely distressed when they figure out they won’t be cured and see no other options, and it’s important for autistic kids to know that autistic adults exist. Showing autistic adults in kid lit—for example, an autistic mentor to an autistic protagonist—would go a long way to help! (I can think of only one example in which an adult relative is even hinted to be autistic—remarkable for a condition with a strong genetic component.)

Kid lit has some portrayals of nonwhite autistic characters, though not many; I know of five. None address real-world issues particularly common to autistics of color, such as the school-to-prison pipeline. Underdiagnosis is also an issue for black and Hispanic autistic kids (and, presumably, even more so for black and Hispanic adults). Representations of low socioeconomic status are also rare in kid lit, although not completely absent. Since both race and socioeconomic status have substantial effects on real-world outcomes for autistic kids, such as suicide risk, it seems particularly important to include autistic characters of color and autistic characters with lower socioeconomic status in fiction—to increase the chances that autistic children of color and/or from low-income families will be correctly identified as autistic, and so that they can see themselves represented, too.

Problem 3c: Stereotypical presentations

In real life, there are many, many ways to be autistic. Kid lit overplays some autistic symptoms and interests/talents and underplays others. It does correctly represent some things as common (e.g., difficulty with eye contact and social interaction). But sensory issues, which are incredibly common in real life, are often downplayed or absent, and executive functioning impairments, difficulty with activities of daily living, and motor differences are rarely referenced (except for some stimming; other common motor issues like catatonia are absent). (This also means the difficulty we have negotiating support for these difficulties isn’t shown; a striking absence for anyone who has ever dealt with them in real life.)

When it comes to talents and special interests, there is an overfocus on stereotyped ones: math, numbers, counting, physics, and being a detective.

There are some refreshing portrayals of less stereotyped interests in kid lit—for example, music or Tudor-era family and political relationships. But the prevalence of stereotypical ones is worrisome. In real life, stereotypes contribute to difficulty getting diagnosed, being pressured into job expectations you can’t meet, or having to frequently explain that you’re not automatically gifted at math. Stereotyped portrayals can also be self-reinforcing, and can cause people to think they (or other people) can’t be autistic because they’re not like the representations they see in fiction.

Fiction can help here as well: By portraying a range of autistic characters with functioning that varies from situation to situation, who embody different demographics, and who have a variety of symptoms and talents.

Outcomes: Dehumanization, neglect, and abuse

When we are seen as less real, when our internal experiences are seen as absent and we are seen as less easily hurt, and when we are mandated to be (or at least act more) neurotypical, it adds up to devaluation and dehumanization: we feel or are seen as acting in the wrong way and needing to be fixed, as being less likely to be feel either emotional or physical pain thus it being okay to take more potentially harmful measures, and as our own opinions mattering less because we’re less real and others around us matter more than we do, and as our own voices being less accurate descriptions than non-autistic peoples’ representations of us. This sets the stage for substantial abuse. (Note that not being diagnosed doesn’t prevent abuse, but does reduce access to protections we might otherwise have, either formal ones such as accommodations or informal ones such as understanding, acceptance, and support. A diagnosis also doesn’t guarantee accommodations, and can sometimes have negative effects, but it’s much harder to get accommodations without one.)

This is shown in several similar ways in fiction and in real life. Autistic people are represented as burdens on others, particularly their families, when they embarrass neurotypical siblings or have greater support needs. This is more common for characters written to “low-functioning” stereotypes.

Autistic characters are often treated rudely or abusively, and no one stands up for them; authority figures may overlook, condone, actively justify, or even hand out abuse and poor treatment. Characters also may be actively exposed to harmful measures intended to help them in the name of character growth. Likewise, therapies and institutional settings that are not uncommonly harmful in real life may be represented as positive or neutral in fiction; this portrayal further minimizes their negative effects.

In real life, we are presented as burdens as well—and are often aware of it even when we may not seem to be listening. This has consequences. At the extreme end, media or other parents justify parents murdering autistic children. Abuse is common, by friends, people on the street, caregivers, and others such as paid service providers, foster care providers, and transportation providers. In general, people with developmental disabilities have drastically higher rates of abuse; abusers may target autistic individuals because they have more difficulty detecting deception and communicating, are less likely to receive appropriate sex education, are more likely to have their communication about sexual abuse misinterpreted, and are more likely to have symptoms of sexual abuse attributed to “autism.”

In school and therapeutic settings, people tolerate abuse for autistic children that they don’t for non-disabled children, such as restraints and seclusion. Applied Behavior Analysis (ABA), a predominantly used therapy for autistic children and often the only therapy that insurance will cover, at least in the U.S., was developed explicitly based on the belief that autistic people were not really people, and had to be made into them. (For discussion of why abuse in ABA is still a problem now, see this fantastic discussion and link collection.)

These are intended for use in extreme circumstances—when children are a danger to themselves or others and the danger cannot be prevented any other way—but some schools use them regularly for lesser offenses such as unwillingness to follow directions.  Abuse of developmentally disabled children and adults also happens in institutional settings.

Similarly, society often fails to adequately support autistic adults, who are more likely to have other medical conditions, have higher rates of unemployment and poverty, homelessness, more unmet health needs, are more likely to be socially isolated, and die earlier. Autistic people are also more vulnerable to medical discrimination, including denial of life-saving organ transplants.

If we were consistently treated as real people—existing for ourselves, not just to affect others; seen as having full internal experiences that matter; and not required to appear more neurotypical or have special talents to compensate for disability—we would be considered more worthy of protection and support. If we were more consistently diagnosed even when we don’t fit stereotypes, we could benefit from the possible protections that a diagnosis can offer.

What fiction can do at its best

At its best, fiction shows us as full characters, real people who exist not just to affect others or educate the reader, and without being reduced to entertainment. It gives us agency. It shows our internal experiences as real and vivid and shows other characters recognizing that we have them.

It can show character growth that doesn’t require us to become more neurotypical, and could show the costs of passing and of not passing. It can include us as regular (though autistic) people, without special talents or psychic powers.

It can show us as people with uneven abilities and disabilities who don’t fall into “high-functioning” or “low-functioning” stereotypes. It shows us as worthy of respect even when we can’t speak or can’t speak much. It identifies us as autistic even when we have self-reflection and narration and agency (with obvious exceptions, such as historical settings where the diagnosis did not exist). It shows us as disabled even if we pass as neurotypical. It can show autistic adults, people of all races and ethnicities, sexual orientations, genders. It shows sensory issues, executive functioning impairments, and motor differences and difficulties.

It can show us as valuable people, not burdens, even when we need more or different kinds of support than a neurotypical character would. It shows us as worth protecting and supporting and actually being protected and supported. It shows abuse as wrong and harmful, including in the guise of treatment. It shows others supporting us and showing us empathy. It can show bad things that happen and good things that happen. It doesn’t present institutional or therapy settings as exclusively good or neutral. It can respond to common issues, like abuse and trauma (and recovery).

When autistic readers get upset about certain portrayals, it’s not because we’re trying to be difficult or demanding, or because we only want a very narrow portrayal of autism; it’s because there is a real-world context, and the situations portrayed often have negative consequences for us in very direct, immediate, ongoing ways. It’s particularly frustrating when those elements are considered helpful or neutral, or go unquestioned. When we read fictional portrayals that reinforce harmful real-life attitudes and stereotypes, it makes our own bad experiences very vivid for us, and also sends the message to non-autistic readers that those tropes are accurate. We don’t want that to happen because it already happens too much.

To be really clear: Good representation doesn’t mean glossing over bad things that happen to us, or inaccurate things people believe about us. But there’s a difference between portraying those events or beliefs as realistic, and having the narrative approve of or confirm them as accurate. Good representation involves thinking about what implications particular portrayals of autism have for autistic and neurotypical people who read those portrayals in the real-world contexts we live in—contexts where autistic people are often dehumanized, made invisible, otherwise misportrayed, and required to “make up for” being autistic in ways that can be impossible for or harmful to us.

Because of the potential for harm, writing good autistic characters may seem challenging or intimidating. If you are a writer (including if you are an autistic writer), please don’t be scared off! You have the potential to do a lot of good, even just by avoiding (or writing against) the tropes described in this article. And you don’t have to stop there (indeed, I hope you won’t). I’ve included a lot of links in this article that I hope will help, and many of them link to even more good content.



About Author

Elizabeth Bartmess

Elizabeth was unschooled growing up and largely raised by books. She is currently editing an anthology with contributions by adult-diagnosed autistic people, and writing speculative fiction about Jewish magic and folklore and about extra-neurodiverse fictional cultures. She does disability advocacy on Twitter, where she co-mods the #autchat and #autismmeans hashtag events.

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16 Comments

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  2. carolyn ogburn on

    this is a topic that I’m so passionate about – and I’m so happy to see your words here. (I have been a fan of your website for a while, but this is my first time writing a comment.)

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  6. Brilliant–you just told my own life story as I lived it. At 47, in spite of my best efforts to be otherwise, I am my disability as well as every negative thing neurotypicals attach to it. Even though I have been fired by one person who felt uncomfortable around me from a job where everybody else liked me (yet again), and was bullied out of a subbing job last fall, I have done and achieved a lot and people seem to resent me for it (from meeting and interviewing rock stars in college to traveling the world and having articles and photography published) and want to diminish what I have done.

    Please keep talking.

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  8. Thank you so much for this article. I am currently writing a scifi short story with an autistic protagonist and have worked with children on the spectrum before, however felt ill-equipped to properly voice her. This piece and the myriad links have opened the doors of insight and perspective that I have been searching for. Thank you thank you!

  9. Fantastic article. I’m currently reading Emma Jean Lazarus Falls in Love with a group of autistic young teens. We are analyzing the stereotypes as well as accurate portrayals as we go. One of the organizing principles of our work this year is learning to distinguish between healthy personal growth and social-emotional learning vs. conforming to ableist demands to act more neurotypical. I’ll pull pieces from this article for our work this afternoon!

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