How to write about Autism and Intellectual Disability?

Question

In a novel I'm writing, I have a minor character who is either autistic, or has an intellectual disability. (I know they're different. But like I said, he's a minor character, so I haven't really decided yet.) Either way, my setting is fantasy, mostly inspired by 9th century middle east, so both conditions would be bundled up as "Simple".

The character never gets a POV, but we see his actions, he is a part of his family, we see others interacting with him. The story demands that he be far from being able to function normally (otherwise, he would have been next in line to the throne). While the character is a very minor one, it is important to me to avoid clichés, and to write him as a character rather than an object that other characters relate to. I don't want a "noble savage", and I don't want someone very disruptive. I do want someone who feels real, neither exaggerated, nor underplayed.

How do I do this? I've tried to look for information on the web, but most of what I find is either very general ("all autistic people are different"), focuses on the family without giving any information about the child and his abilities, or is followed by vast amounts of criticism for being imprecise. So I don't even know what's true and what's not, what's common among people with autism and what is rare-but-photogenic.

An additional detail: the plot spans about 50 years, so while this character would not appear often, he would make appearances as a child, a teen and an adult.

Would it be reasonable to make him have autism, and use a letter board for communication?

How would a person with autism respond to a situation with a crowd, colours and noise, such as a royal wedding?

What should I avoid by all means if I don't want to offend, but to give a positive representation?

Answer 1

(Background: I have a "non-verbal" sister with autism who is about to become a legal adult, and I worked with her special education classmates, including other autistic children, while I was in grade school. My answer focuses on autism and not really on IDD.)

Originally written December 2017. Updated June 2019 with some additional information. Some stuff has been crossed out but nothing has been removed.)

For reference, this page has the DSM-V criteria for a diagnosis of Autism Spectrum Disorder. (Note that this has changed since the DSM-IV since ASD is still relatively new and we still don't know a lot about it.) A simplified version:

1. 3 out of 3 social differences/deficits:
   1. Missing or excessive components of social reciprocity/back-and-forth interaction
   2. Missing understanding of nonverbal communication (e.g. gestures) and/or missing/excessive use of them
      • personal note: all 3 of these criteria have variations by culture, but this criteria probably has the most variation
   3. Missing understanding or persistent misunderstanding or no interest in learning about how relationships are developed and maintained
2. 2 out of 4 physical/sensory/interest differences/deficits:
   1. Repetitive physical movements (e.g. fidgeting); also known as stimming
   2. Very strong need for sameness (e.g. rigid adherence to routines) and a lot of trouble adapting/being flexible (often clearest in childhood before the child learns about or is socially conditioned to hide distress)
   3. Restricted, very strong interest(s); can be in something generic (animals) or something really specific (the lore and world of Legend of Zelda) or something that seems unusual (fans--as in the kind that blows air at you); also known as a special interest
   4. Atypical sensory processing, whether oversensitive or undersensitive or both (more info later); also sometimes known as sensory processing disorder
3. Present from a very early age, possibly birth
   • may not be apparent until later, when finally overwhelmed
   • may be hidden later due to learned coping mechanisms or hiding techniques
4. Significantly affects life (even if other people don't see it)
5. Behaviors/etc are not better explained by solely an intellectual developmental disorder or solely a global developmental delay (autism and IDD are frequently comorbid, though)

The story demands that he be far from being able to function normally (otherwise, he would have been next in line to the throne).

If this is the case, you may benefit more from finding accounts written by family members/people close to autistic people rather than narratives written by autistic people themselves. A lot of those with autism who write their own narratives are closer to "high-functioning"; it's hard to find narratives written by those who are "far from being able to function normally." Someone who can write (or dictate) their own narrative with a lexicon beyond elementary school but who cannot function normally is more likely to be someone with a physical disability rather than an intellectual disability or autism.

That being said, narratives written by people with autism can still be a starting place, and those narratives are likely to have stories of how the narrator was treated differently in positive and negative ways, how their differences were accepted or rejected, how they were accommodated or bullied, etc. which could still help? Especially when it comes to understanding other people, as many autistic people, including those who are "high-functioning", process social interactions differently. (Refer to the DSM-V's social criteria for ASD.)

I've tried to look for information on the web, but most of what I find is either very general ("all autistic people are different")

Unfortunately this is true since "autism" is a giant spectrum. For information about the behavior of an autistic person who would not be the heir to the throne: I almost want to tell you that you should look for the really old stereotypes of autistic people, because those stereotypes stemmed from the atypical behavior of people who were likely on the more severe end of the spectrum. Might be better to look for the stereotypes of autistic people from the last few decades, when more "low-functioning" autistic children were diagnosed and became visible to society. Society was pretty quick to judge them.

Would it be reasonable to make him have autism, and use a letter board for communication?

Sounds like he'd do just fine as a mute king. (Unless mute kings aren't a thing.) How far is "far" in "far from being able to function normally"?

Personal examples:

• If my sister wants something, then she will look for it on her own, but she usually will not ask for it unless someone asks her "What do you want?" (We've been trying to get her to initiate requests for years with some degree of success.) Previously she didn't even look for what she wanted on her own. This includes essentials such as food, water, and the bathroom (we treat her well, so perhaps that's part of the reason that she didn't ask for them--because she knew we'd give them to her within a reasonable timeframe. But we noticed very early on that unlike me, she never looked for food or water between meals, and she would also immediately use the bathroom after an outing in which she did not use the bathroom. We've been trying to get her to tell us if she wants to use the bathroom when we're out of the house. She has no problem using the bathroom whenever she wants to in our house or at school, so we think the culprit is the uncertainty of an unfamiliar environment.)
• My sister doesn't really have a first language. She's brilliant and exhibits reasoning/deduction skills, pattern recognition, etc. and she can learn by observation. But she didn't really learn a first language, so now she has no grammar for any language that would allow her to really read and understand information about the world. (I suspect she still doesn't know what a president is, and she definitely doesn't understand hygiene. She can learn through observation, but how can you observe germs if your hands don't look dirty?) This probably has the biggest impact on how she functions every day, although it's an indirect impact. Without language, she probably can't understand what's going on in the world. Her world might be limited to the places she's been.
• Her autistic classmates, both those who were also non-verbal and those who were closer to "high-functioning" (but not far enough to not be in special education), seemed to be unable to understand or have a harder time understanding or remembering unspoken social rules, including simple ones such as if someone is standing up and speaking into a microphone and everyone else is sitting, then you should sit, too. I imagine this would be a much bigger deal in a royal family!

Does your character have a first language? How much does your character understand? Then go from there.

How would a person with autism respond to a situation with a crowd, colours and noise, such as a royal wedding?

I think the majority of people with autism are more sensitive physically than non-autistic people, so they can get overstimulated with too many colors and noises. I think a lot of them also don't like crowds, although I don't know if it's because something about crowds overstimulates their senses (body odor? too much touching?) or if it's because of something else, such as a preference for being alone or with fewer people.

Paragraph above still kind of stands, but here's a better version:

A lot of people with autism have different sensory processing than other people. They may be oversensitive/sensory-avoidant or undersensitive/sensory-seeking. So depending on which autistic person you encounter, if you throw them into a royal wedding, you are likely to get one of these two reactions:

• No! Too much! I need to run away from the colors and noise and people!
• Yes! More colors! More noise! More people! Still not enough!

And if you don't get one of those reactions, you may get a mixture of the two, as oversensitivity and undersensitivity isn't total; you can be oversensitive to most things but undersensitive to a few things, or vice versa, or you could even have an equal split. So your character could crave visual stimuli and love all the colorful decorations and flashy outfits while simultaneously hating all the noise and chatter and music and footsteps.

Personal examples of oversensitivity: My sister and at least one of her autistic classmates put their hands over their ears when they hear something that's really loud. If there's room and the loud noise doesn't stop, my sister will move further away from the source. (My sister also happens to be hearing impaired, so if it gets really bad, she just turns off her hearing aids.)

I myself also have done very poorly with loud noises (I almost cried during my elementary school band's concerts because I hate how powerful the booms are in person) and have only recently discovered that my sensory processing is apparently atypical (possibly Sensory Processing Disorder) and actually akin to the oversensitivity of some individuals with autism. One of my smaller quirks that I share with some autistic people is that I can't stand sock/stocking/etc seams anywhere but the top of my foot.

Examples of how you might see undersensitivity: seemingly high pain tolerance (possibly linked to self-harming stims, such as hand-biting and head-banging), inability to sleep without a heavy/weighted blanket, constantly needing to touch things (can be everything in general, can be specific textures)

Atypical sensory processing is very common among individuals with autism and is listed as one of the possible criteria in the DSM-V, but note that it is not a required criteria (it's in the "2 out of 4" section)

What should I avoid by all means if I don't want to offend, but to give a positive representation?

This is tricky to answer. My answer is in the form of what you might want to try rather than what you should avoid.

If you want to give a positive representation, show this character excelling at something. It doesn't even have to be a "productive" thing that lets him directly contribute to society, although that would definitely be great; it can be something as simple as being really good at organizing (maybe he sorted the entire royal library in a day and now everyone who goes there can find things way more easily), or maybe he's a great gardener, or maybe he's a fantastic painter and has an amazing eye for details*, or maybe he's very sensitive to people's emotions and always discreetly lets his sibling know when that sibling is pissing someone off by tugging at the sleeve...

* On one end of the spectrum, we have Temple Grandin and her amazing eye for detail. On the other end of the spectrum, we have my sister and her amazing eye for detail.

Answer 2

Autism is... complicated. Before I start explaining, a few words about my background: I've been diagnosed with (a mild form of) autism, and work for a company that primarily employs autistic people, mostly from the "high-functioning" end of the spectrum (who would not fit your requirements).

Make of that what you will, I just wanted to clarify where I come from, since it informs my answer.

As far as I know, there is no generally accepted list of symptoms. Well, I've seen lists, but they tend to vary wildly and contain a lot of contradictions. Unlike, say, a broken leg, which has a clearly visible, measurable, effect and well known causes, there is very little physical evidence of autism. It's rather a very broad category of "abnormal" behavioural characteristics, ranging in "impact" from negligible to crippling (which is great news for your character, because you can basically pick whatever fits the story).

As with all broad categories, it's hard to say anything definitive. You might as well ask how to write left handed people or people with a certain shoe size. Yes, they have something in common, but, contrary perhaps to popular belief, it's not necessarily a defining characteristic. In its extreme forms, it can be, of course. But there's a reason a lot of sources are "very general".

My advice would be to just write a character that fits your story. There's no check list you have to follow, not even a partial one, to make that character "believably autistic". And if you're unsure about the diagnosis, don't fixate on it. In reality, it can be very hard to differentiate between, say, a specific learning disability, (low-functioning) autism, or just a low IQ score which might just stem from a poor general education. Perhaps it could be enough to make the character "simple" and giving them a few interesting traits?

If you specifically want an autistic character, here's a (short) list of characteristics you could use that, in the worst case, at least won't contradict the idea that they're autistic and at best nudge your readers towards that diagnosis:

-A poor ability to filter external stimuli, which can result in sensory overload. Such a character would want to avoid crowds and festivities, perhaps to an extreme extent if the sensation manifests as physical pain. It could also just cause mild discomfort, irritatbility, dizziness or an inability to focus.

-One or two hobbies that they tend to concentrate on to drown out the rest of the world. In an extreme case, they might forego food or sleep without even noticing. In a milder form, they might just be really interested or talented.

-Social anxiety or awkwardness, shyness; Could even lead to panic attacks.

-The inability to read facial expressions or body language. Rather stereotypical, but true for some people.

-Anything ranging from extreme devotion to a daily routine to the inability to make even short-term appointments.

Answer 3

There are different kinds of autism, and people have them in different degrees.

The best way to learn what autism looks and feels like is to read books by autists and the people that live ot work with them. Don't read scientific articles, but narrative accounts. There are a few books in which autists describe their own experiences. There is also fiction like the movie Rainman and the book it is based on, but I would be careful with movies, because you are seeing an actor's interpretation of autism and not the real thing. YouTube may be a source for original footage. I know there are documentaries about autism and interviews with autists. There are also web forums for autists and their family where you can ask people directly.

I'm sure with these pointers you can find something.

Answer 4

Many autistic people I know would hate a royal wedding because of the crowds, the noise, etc. Many, but not all, are hyper sensitive to noise, colour and confusion. Also, it is different from the normal routine.

Answer 5

I don't claim to know anything about autism, but speaking of mental handicaps in general:

"All autistic people are different." Well, sure. But I presume there is some definition of "autistic", some set of symptoms, that all autistic people would share to some extent, or the word doesn't have any meaning. I'm sure that all people with broken legs are different in the sense that they have different occupations, different hobbies, different religions, different political beliefs, etc. But they are all the same in that they have broken legs. And there are some things that naturally follow from having broken legs, like they have difficulty walking.

I suppose there's a balance between writing a character who is described as being a member of a certain group as a stereotype, and writing that character in a way that makes him indistinguishable from people who are not members of the group. To take a more familiar example: If you say that a certain character is black, but then he behaves exactly like all the white characters and all the white characters treat him exactly the same as they treat black characters, why did you even mention that he was black? (I suppose such a story might be intended as a subtle statement about racism -- see, we're all just people, right?.) But at the other extreme, if he's always eating fried chicken and watermelon and talking in Ebonics and talking about black pride and using drugs and seducing white women and every other stereotype about black people, whether good or bad, the character would quickly become ludicrous.

My point is, that my advice would be: Get a list of symptoms of autism. As others have said, get some first-person accounts of autism, things written by autistic people or by the families of autistic people. A narrative would surely be better than a chapter from a psychiatry textbook, as the narrative would give more of a feel of day to day life, and you are presumably writing a narrative and not a textbook. Then pick some symptoms to highlight. It is not only not necessary to have the character display EVERY textbook symptom of autism, but probably counter-productive. As I admitted up front, I don't know anything specifically about autism, but I'd guess that most real autistic people don't display every symptom in the textbook. If there are 10 symptoms, some will display numbers 1, 2, and 5, others 2, 3, and 7, etc. Pick a few that will further your story and use those.

And yes, you need a balance between making his symptoms exaggerated and over the top, and making them so muted that they don't make any difference. I suppose there's a tendency in fiction to exaggerate characters for dramatic effect. The hero is not just strong, but he can fight 20 men simultaneously and beat them all up. The villain is not just greedy and violent, but he will kill someone for a dollar. Etc. To a certain extent it creates drama, but when you go over the top it becomes unbelievable and silly.