The Trouble With Autism in Novels

The writer’s understanding of Keats’ “negative capability” is incorrect. Negative capability is an artist’s ability to accept “uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.”

Another important point is that autism is a spectrum disorder. There are many of us who live independently, communicate well and hold down responsible jobs. The downside of this apparently "high-functioning" end of the spectrum is that we still struggle with significant deficiencies in whose existence many outsiders cannot or will not believe. Our "brilliance" in some spheres causes others to judge us as lazy or malingering when we founder in other areas of life that "neurotypicals" manage with ease.

I wonder what the author thinks of the portrayal of the main character in the YA novel Marcelo in the Real World.

Born On A Blue Day is a wonderful memoir. The Rosie Project (a fictional novel) was written, I suspect, by someone with a working knowledge of PPDs & Aspergers. Hope you might enjoy one or the other. —A Lucky Aunt to an Aspie

You might enjoy this essay by Elizabeth Bartmess about what representation of autistic characters in literature looks like when it's done well: http://www.thinkingautismguide.com/2018/02/what-good-representation-of-autistic.html

Thank you for writing this.

Great piece about the representation of autism in novels. As the sister of someone with severe autism, I am often upset about its representation in the media. Too often people with less severe autism are simply touted as quirky geniuses, while the more severe cases are either ignored or simply used as a difficult challenge the rest of the family has to deal with. Both ends of the spectrum are complex people and deserve to be fully developed. There should be someone representing my brother as an individual, who can laugh, joke, cry, and think even if cannot communicate those feelings consistently. Yes, life is not easy and there is often violence and different treatments to try and ease the pain he feels. However, all of these things are a part of life and need to be represented in the media. if authors are going to use autism, they should do it responsibly to highlight members of society, not reduce them.

My adult daughter was diagnosed this past summer as on the spectrum. She appears "high-functioning" (autistics hate those labels, as they are reductive and unhelpful and functional capacity varies greatly with situation and stress; preferred is generally high-support needs vs lower support needs). She is extremely articulate if she has a chance to reflect, particularly in writing. But autism affects her outwardly, for example, in flat looking affect, altho her inner emotional life is rich; awkwardness in social interaction and some obliviousness to social mannerisms; difficulty managing stress and multiple demands, so education, job searching, driving, shopping can be extremely stressful for her. I personally have found it gratifying, humbling, and fascinating to consider how she perceives differently than I do and how differences in expression can cause unnecessary frustration. I focus on accepting her as she is. The world sometimes does not. Autistics are human beings with individual attributes and perceptions. If we, as a cultural value or norm, accepted others who seem unlike us and focused on celebrating what we can together, we would generally be happier and more peaceful. There are much higher support need autistics than she is, I realize, and we should acknowledge and support parents of children who present with high need and demand, of any kind. Finally, I believe that it is a great disservice to project our misperceptions on anyone to use as an artistic device.

This is a needed essay. While I haven't read these novels, what is said here about them makes me, as a learning disabled person, scriptwriter, and music critic, want to say "here we go again." Indie rockers, uniformly, especailly if they're grunge or 90s alt rock, use the disabled in the same way that these novels do with autism: as a stand in for everything dark, disturbing, and therefore an insperation to us all, becasue creativity, in any disabled form, autisim included, is close to madness. Or aren't mental disabilites wonderful, and it's so cool to have problems. None of these people, these novelists incuded, understands that they're wrong about all of this. I wouldn't wish anyone have my disability, I find it to be a burden. Ms. Lee understands this too, so read this essay, and think about what I say here too, and if you can admit you're wrong, then you've taken the first step to not be ableist anymore.

I have always hated playing devil's advocate - but perhaps we, as readers and critics, need to let author's individual characters be individuals, instead of demanding that they represent a whole group of people. My sister is the most gifted teacher I've ever seen working with autistic kids - and she seems to always start by discovering their uniqueness - their particular strengths, weaknesses, humor, fears, talents, obsessions, triggers. There's somebody unique who, first, she works to find and try her best to understand, and then she works with them to create a path. She talks a lot about her kids over the years, but I never, ever heard her lump them into a group - it's always by name and by the step they're on with her on that journey. Oh wait! There is a time she does talk about her kids as a group- in the school's year-end talent show, she always describes how proud she is of her whole entire class!

the treatment community, educators and the general public do not mean just one thing, or just one set of symptoms and behaviors, when they use the word autism. How can we expect the writers of fiction to define precisely what we all mean by the word? The truth of course, is that individuals can never be described in short-hand sound bites, and persons with autism are individuals too. As Autism has grown more common (my little granddaughter is autistic, and non-verbal at four and a half) more people are aware of the complexity and variety of the individual developmental delays and variances encompassed by this catch-all, and now very widely applied, word.

If the writer worked her thesis up a bit more the comment section would be very different.

I wonder why you picked Macdonald's reductive work, instead of T.H. White's The Goshawk to read to your son. Our single most engrossing bedtime read was "Ami" aka The Naturalist on the River Amazons by Bates. I think White's book would be more in that mode. But to answer the caption writer's question, of course they should. The bullet theory of communication went out the window long ago. Readers -- and listeners -- have a right to create, in their minds, their own versions of great works. BTW, when my daughter wasn't admitted to Columbia, the only regret I had was that she wouldn't be able to study with you. After reading this essay I regret it more than ever.

I just read a gem of a memoir by a man who is "on the spectrum." It's The Secret Life of a Black Aspie, by Anand Prahlad, University of Alaska Press, 2017. After a childhood and young adulthood coping with being poor, black, and neuro-atypical, as well as having epileptic seizures, asthma, and multiple allergies, he is now doing rather well. But his book helps the reader understand his atypical perceptions of time, sights, sounds, scents, and tactile experiences, and how he struggles to cope with life. Were he deeper on the spectrum, he could not describe this to us, but his experience of the world, and his skill at describing it, gives one a sampling of the issues that cause such persons to respond to the world around them in unexpected ways. Prahlad is a published poet, and one isn't always clear if his word choice is metaphoric or exactly descriptive of his world, but no matter, either way I found his story fascinating.

One of the distressing things about the widespread tendency for authors to use autism as plot device or metaphor is that these authors don't seem to imagine that a person with autism could possibly be reading their works. How might these writers approach this issue differently if they were writing not *about* autistic people, but *to* or *for* them? This question helps illuminate what is so troubling about such representations. Once we ask, "Who are these depictions for?" it becomes clear that they are not intended to foster a deeper understanding of autism among neurotypical people, nor are they meant to empower autistic people or improve the conditions of their lives. In short, their only purpose seems to be to help neurotypical authors and readers reflect on themselves. Lee's article makes a compelling case for why writers who feel compelled to use autism in this way ought to rethink their motives and aims. As a writer, and the sibling of a profoundly autistic person, I'm grateful for it.

Thank you for writing this excellent piece. I find that wrapping my head around how another person's brain works increases my understanding of all of human nature. Of course your son is thinking and how fortunate he is to have a parent smart enough to enjoy that part of him.

Very well-written piece about autism in novels, criticizing how it is always portrayed as "other-worldly" - you know the savant, the eerily spiritual child, the tragic child entombed in himself. BLAH, BLAH, BLAH. News Flash - Autistic people are just that - PEOPLE. They are all different, all unique. They are aware of the world around them, even if it is difficult for them to communicate. They are NOT different from you on some spiritual or cellular level. They do not have "special needs." They have human needs just like you do - to be loved, to feel purposeful, to be respected, to be seen as whole and not deficient. They have struggles and successes. They do not need to have a "gift" or spiritual connection to matter. They matter because they are human beings, just like you. Stop trying to make autism some non-human, different thing. Autistic people are people, and that's really all you need to remember.

Interesting perspective. As the mom of an autistic daughter, I see another place where non-autistic writers often get autism wrong. One of the condition's defining characteristics is the inability to "read" other people's emotions and reactions. My daughter (who is verbal) feels the same emotions as anyone else, but she gets nothing back from looking at other people's faces. Do they like her? love her? hate her? Do they intend good or harm? are they interested in what she's saying or bored by it? She has no idea. Neurotypical people don't realize how much of our ongoing sense of being loved or safe comes from these kinds of perceptions. Autism is incredibly lonely. The only fiction I've seen that credibly represented this was "The Curious Incident of the Dog in the Night-Time."

And then they came for our books.

Two other fairly recent novels with autistic spectrum characters - Shtum by Jem Lester (which I reviewed here https://wp.me/pauSsa-35) and It's. Nice. Outside. by Jim Kokoris (which I reviewed here https://wp.me/pauSsa-7A). I happen to several members of my family who are on the very mild side of the spectrum, so I can understand why you wrote this. The thing is, the spectrum is so wide, that I think there's room for all kinds of novels that portray all the various aspects and possibilities of what that can entail.

An additional problem with writing autism spectrum characters in novels is perhaps a result of the current state of the publishing world. Unless a character is flagged for the reader as 'autistic', which then must define them, including interactions, the agents, editors and slush-pile censors reject spectrum voices as "nobody would really say this/behave this way". An author must label the character for a neurotypical to accept the behavior (or rather to set that person aside as being different and not necessarily someone they can relate to, except through sympathy or compassion.)

I liked the author's points about the use of illnesses/syndromes as metaphors for various themes and messages. A book that I thought did a good job at having an autistic protagonist is "The Curious Incident of the Dog in the Night-time" by Mark Haddon. Autism is never overtly stated as the cause for the teen's differences, but pretty clear if you know some autistic people. The story includes some of the challenges of schooling, parenting and being an autistic person confronting challenges that would not usually impact others.

This is a really beautiful and thought-provoking essay, and has given me much to think about--as a reader, as a writer, and as a mother. Thank you.

1. Autism, like most 'conditions' has many expressions and forms. There is never one correct way to write about anyone or anything. I have known many children and adults diagnosed as 'on the spectrum', and indeed, it is a spectrum. 2. Authors are free to write as they wish in our society. Society's perception and description of our world, including people with autism, evolves over time, as you noted. 3. I am disabled and elderly, two 'conditions' that are often seen as negative cliches. And I have observed the ever expanding advocacy for people who have historically been under represented, misrepresented, and used as symbols for good and evil and everything in between. 4. The language we use when describing all people is rapidly evolving. Labels are very important, and we often resist new more supportive labels free from the stigma of the older pejorative labels. For example in the past 50 years the 'accepted' term for Americans whose origins are in Africa has changed at least four times. 5. Human nature and human response to people perceived as unusual/different operate at a very primitive level. We wish that this were not so, so we educate our children in tolerance and acceptance. You have described the love between you and your son, and this love will serve you both well in your journey.

Sontag's, to which the writer alludes, is a classic. Metaphors are powerful, and it is important to analyze their use and consider their implications. I don't think the author takes this position, but there is a contingency who views any metaphorical use of human difference or suffering as unethical--an act of ideological violence. But the alternative is to resist drawing connections between different human experiences, which seems solipsistic and sad. Using a human condition as a metaphor for another human condition will always result in come elision of the real complexity of things. But even considering the failures of such a comparison is productive and has the potential to increase our understanding of different modes of being such as autism. I am glad for the representations of autism and and for the author's critique of them. The dialectic is productive.

I'm confused by all the "freedom of speech should always be defended at all costs/political correctness police have gone overboard" etc. reactions to this piece; I don't see any point where Lee states that writers should stop writing about autism (in fact, she specifically says near the end that writers should have no limits). She merely details, with layered nuance and admirably clear-eyed emotion, the many ways in which these attempts fall short. I read it as a Do Better, rather than a Don't Do It At All.

Most human experiences are reduced to metaphors in literature, that's part of what makes it literature. I don't understand this new trend of policing "representation" in make-believe stories and people. Paul Auster wrote a great novel in which the protagonist is a dog, yet he has no actual experience having been a dog. Should the canine community be outraged?

You may want to read THE HOME FRONT by Margaret Vandenburg. It's an intriguing novel about a couple with an autistic son, wherein the husband directs a squad of drone operators for the military, and the wife is obsessed with caring for their son. It's from The Permanent Press, who I briefly worked for as a co-publisher. They also just published my thriller, YOU'RE DEAD, which features a hero who was autistic as a child, and largely, though not entirely, emerged from that state of mind. I have a close relative who is on the spectrum, and I believe so-called high functioning autism is just a different type of mind, not a deficiency.

My best friend’s son is a non-verbal 27 year old autistic man who appears to have the abilities of a preschooler. As an author myself, I decided to write a novel (The Place to Say Goodbye) about a nonverbal autistic man whose thoughts are shared with the reader. I believe that autistic people who are nonverbal have the ability to think things like verbal people and I wanted that portrayed. I know my book is an accurate portrayal of an autistic man since I’ve watched my friend’s son cope with this condition his entire life.

Just a note, I read "H is for Hawk". I enjoyed it very much. I saw many parallels between this hawk and someone on the autism spectrum. The expectations of the writer versus the nature of the hawk. There is nothing wrong with the hawk. It's a hawk.

What about the character of Benji in Faulkner's SOUND AND THE FURY ? Or do novels not count if they're more than 50 years old?

The notion of autism as entrapment of some inner self is one I think culture sustains because it does poetic service not for autistic people but for the rest of us. Aren’t we all filled with worlds of inexpressible content? Deep inside, don’t we flail emotionally, banging our heads repeatedly on our psychic walls of shame and flinging ourselves into the mental furniture of loss and regret? The problem is that to believe that the self inheres is to believe that we have ontological separateness. But is there any evidence for the self at all, save for the sustained default of conventional belief? To get along in life, we must define ourselves. But it comes at a cost. Definition requires contrast, which Emmanuel Levinas sees as essentially violent: your prestige means nothing without my mundanity. Or, my normality is not merely distinct from disability, it absolutely depends on it.

My heartfelt sympathy is extended to any parent who finds themselves raising a child on the spectrum but this politely written essay is too much. Stop trying to control what writers write in a free society. Stop trying to control what I may be able to read in a free society. Stop trying to silence free speech and artistic expression in a free society. If you don't like a work, regardless of your level of exposure to it, don't read it either for yourself or for your son. Seriously, this is another variation of the tyranny of identity politics and extremist progressivism. The latest and truly frightening example is what has happened to Amélie Wen Zhao. The landscape is getting very Soviet. Snap out of it.

I have taught children with special needs for many years, and was moved by this essay. There were a few other books that I might recommend on the subject: the sciene fiction novel The Speed of Dark by Eliz Moon (what happens when they find a cure for autism and demand that all people with autism take the cure) and Not Even Wrong by Paul Collins, a memoir about his first discovery that his child is autistic and his family's journey; a positive and thoughtful look at what autism is.

Complex illnesses are reduced to metaphor in a number of ways. People will prefer one type of metaphor drawn by the narrative which they best understand; I would include biological explanations as well as literary tropes. We have gotten quite far when the metaphor has led us to a real world understanding that is useful, but many metaphors are diversions that only reflect a shallow type of understanding. Or worse, there are some people who knowingly pedal false understandings. I am not sure how useful autism is as a diagnosis, I certainly think that we have a better understanding than we did 30years ago. Will there be some breakthrough like the one with TB that leads to a simple explanation I’m not convinced.

Ms Lee's is a timely, important report. "Jump" must represent a breakthrough. This is a thread of incipient history being made, and I hope Ms Lee will be a leading participant.

So exquisitely descriptive of the emotions a mother feels and through her words we get a glimpse of what an autistic youngster feels. It is a quandary to know which it is when a person behaves oddly - is she/he unaware of the meaning of a situation or there is awareness but the response is hampered by neurological factors. The author is convincing in showing us that the person is indeed aware but is unable to formulate an appropriate response. In a way, it is like a locked-in syndrome in neurology, where a person appears unaware of the surroundings because she/he lacks the motor ability to indicate otherwise. Thank you for making us aware about this situation in an autistic individual.

In a free society, novelists can write about anything that they choose to write about. Some people will think the novelist who writes about autism is getting something right. Some other people will think it is all wrong. Welcome to freedom.

Your son is no more a particular book than he is a particular disease. This unhealthy desire to identify 'appropriate' subjects, themes and motifs for art and 'who' [gender, race, other] can use them is getting dangerously mainstream.

I have a daughter, just a little younger than J, whom I've met. My girl is also on the spectrum but very different from J. They always remind me that when you've met one autistic person, you've met one autistic person; they are all different, and yet I've never met one who did not have an active, sometimes extremely rich interior life.

Well said. I often don't know what my daughter is thinking but I know that she is thinking. Your concerns about literary constructs surrounding autism reflect my own about how I and the world view my daughter. Sometimes I view her autism as a gift, one that has made me grow into a better person. But it that what it is? A gift for me but a tremendous challenge that she has to live with. No doubt many struggle on how to understand the why.

Speaking as 'the normal one' whose sister was diagnosed in 1953 -- before I was born, and well before autism became fashionable -- I loathe most fictional descriptions of autism, and I particularly despise the ones that portray it either as an extreme of cute eccentricity or some kind of superpower. The former is a despicable diminution of the autistic person's dignity. At the root of the latter is an inchoate insistence that everything balances out, that when God or nature takes something away with one hand, she gives compensation with the other. Some autistic people are just damaged. That said, all literature relies to some degree on metaphor. Pretty nearly every other action or aspect of the human condition becomes metaphor in fiction. A depiction which is accurate, not meretricious, and especially which acknowledges autism is a disability, not just another way of being in the world and especially not a wonderful gift, should be acceptable, and read by the family of an autistic person with the knowledge in mind that the author's characters and plot cannot cover every possible circumstance, and unless it's obviously dishonest, if it doesnt mirror your specific experience, well, YMMV.

David Mitchell's introduction to "The Reason I Jump" is empathetic and informative. His categorization of well-meaning remarks about his autistic son [“You mean he’s like Rainman?] , followed by his even responses are a gift to relatives of anyone “on the spectrum,” especially mid- to low-functioning, and also to the well-meaing. Mitchell's introduction to Higashida's " Fall Down 7 Times Get Up 8" mentions the NY Times review of “The Reason I Jump,” in which the reviewer [the mother of an autistic child] doubts Higashida’s authorial agency. “Fall Down…” should put that suspicion to rest once and for all. Mitchell and his wife KA Yoshida have brought Naoki Higashida to a wider audience. I think your life will be enriched if you join it. To Marie Myung-Ok Lee's essay, I add that autism as a TV/film device and not an integral part of the character is lazy and even repellent.

Beautifully written essay about the prevailing morbid fascination with autism in contemporary American literature. Autism now serves as an all purpose literary deus ex machina. Do you need a savant, a mute, an oracle, an idiot, etc.? Just write in a character with autism and your problems are solved. It has gotten to the point that I avoid works of fiction which exploit autism and, regrettably, there are a lot of them.