Autism, books, Children's Health, family, Mental Health, Psychology, writing, Young Adult fiction

Getting It Right: Your Characters with Developmental Disorders

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There seems to be a new trend in fiction, especially YA and MG fiction — to include as many various sorts of disabilities into one year of publishing as possible. Now, I don’t have an issue one bit with wanting to portray people who are in some way physically impaired or mentally challenged. My intense concern is with portraying them accurately.

Both my oldest son and I are on the high-functioning end of the autism spectrum. So, as far as medical jargon goes, we are autistic, and that means we have a “developmental disability”. Don’t get me started on all the things I find wrong with this term. For the sake of this post, suffice it to say we take in the world differently than most of the people around us; but that does not, for one instant, mean we are not able to carry on through life.

Okay, before I get too ranty, here’s my point when it comes to authors. Let’s say you want to write a story about someone with autism. Maybe you wish to do so because your loved one/relative/acquaintance is ASD. Or you actually are on the spectrum. (I’m self-publishing this year — who wants to join me?)

But, let’s say you decide your portfolio needs some ramping up, so you select a “disability book,” and choose autism by throwing a dart into a medical journal with your eyes shut. I truly hope this was not the case…

Anyway, whenever a writer starts a new project (let’s say this “disability book”), they need to determine some basic things: “How am I picturing my characters? Where shall I set their story? Can I get away with spending 178 hours on Pinterest and calling it research? How many cups of tea can I drink in one day before I dissolve? What’s the best kind of cookie to go with my favorite tea? Where’s the greatest place in my house to hide with my laptop and notebooks and people will think I’m asleep and not interrupt me?”

And, most important of all: “Should I interview someone who has the same condition my character does?”

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Before having my little Muffin 4 weeks early, I would not have felt qualified to write something about premature infants without talking to mothers with preemies. Before I had an autistic White Fang, I never even thought about touching on this subject in my fiction.

So, if you’re an author who’s honestly interested in learning more about autistics, and representing them accurately, what to do?

Well, you can start with the medical texts. (Or, in this day and age, WebMd.) Yeah, it does give you a pretty correct description of symptoms and difficulties, challenges in terms of academics and living alone and having a long-term relationship. Sure. But does it really take a living, breathing human being and put them in front of you, with their own story to tell? Nope.

I’d highly recommend finding a willing participant to interview. And think beyond what the professional community is saying. What does their day-to-day life look like? Meals, chores, errands, appointments, hobbies and pet peeves? What’s their living situation? With parents/relatives/friends/a significant other? Do they work or go to school? Can they feel like they can do either?

What are their biggest sensory issues? How does that show itself? Are there certain foods they just have to avoid at all costs? Types of fabric? Public places? Ways of transportation?

There’s always a lot to consider when you’re looking at the whole person, not just terminology or a Psychology Today article.

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If you have the opportunity, talk to family and friends as well. How did receiving the diagnosis affect them? What sort of treatments or therapies did they introduce to their loved one? What steps did they take to help outsiders better understand the spectrum and where on it their particular ASD-er falls?

It would probably also help to interview some people who should know more about ASD, but maybe don’t — educators, law enforcement, social workers. Find out what some of the preconceptions are, from children and adults, and whether they’re pretty close to the truth, or just stereotypes.

When all of that is done, try asking the inspiration for your character what sort of plot they could envision themselves in. Do they have a partner/spouse, or no way? Could they be in their dream job, or forget about leaving the house except every other Wednesday at noon? Would they like to travel, go to college, work with animals? Would their fictionalized counterpart in fact be living on a Minecraft server, Middle-Earth, or actually be a cat?

You get the idea. Sometimes what feels totally natural and normal to us doesn’t click for the rest of the world.

In this blog, I try to keep readers aware of and involved in these discussions. As I see a world growing increasingly intolerant, while screaming for tolerance, intent on pushing one version of information instead of the facts of the whole picture, I feel the time has definitely come for people like me to start speaking up.

And if we’re really lucky, others will not only listen to my advice, but heed it.

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9 thoughts on “Getting It Right: Your Characters with Developmental Disorders”

  1. I love this post so much and definitely agree! And one thing I’ve noticed is that just reading medical text or lists of symptoms never really compares to talking to someone who actually identifies with the spectrum? Because it just is so varied and it displays so differently from person to person. I do hope that authors don’t decide to put disabilities in their books to be “trendy” though. Yikes. I hope people are writing books about things that they’re passionate about.

    Posts like yours are invaluable and thank you for blogging so amazingly!

    Liked by 1 person

    1. Thank you so much, Cait! This is a very important topic, because I’ve already come across several novels that claimed to be portraying autism or depression or other emotional/sensory conditions in an “enlightening” way, and in fact they only played up to the stereotypes and reinforced the misconceptions. And I could tell from the authors’ notes that they had no personal experience with whatever condition/situation it was, that they just “felt it was an important subject to discuss.” Not in the wrong way, it isn’t.

      I am so very glad to know I have support. I feel like the ignored voice shouting in the corner right now. šŸ™‚

      Liked by 1 person

  2. One of the things I love that is coming to the forefront of book talk is the concept of ‘own voices’ because there are so many little things that people don’t release happen when a person is ex. autistic or Jewlish or Black, etc, that an outside author would have trouble fitting into a book but someone who is say deaf has to deal with daily. A recent review I watched on booktube had two brilliant examples of this (from the same book). The main character is jewlish and has 2 moms. She would say she was going to the synagogue without saying what that was because a jewish person would never say that just like you would never define what a church is, it just is. The second example was the character talked about her moms she never specified which, because a person like that wouldn’t do it in real life. It’s little things like these that happen everyday that people don’t think about that makes ‘own voices’ (or very very in depth research on the topic) so very very important. It’s like when you can tell a book or tv episode is written by a man because the female character walks down a side alleyway in the dark and thinks nothing of it.

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    1. It’s so, so true that readers can tell when something feels authentic. When I explain certain things about autism in my writing, it’s for the benefit of the reader, but I don’t talk down to my characters – I make it part of the story, using it to describe or pinpoint a character’s feelings or motivation, or showing how it’s normal for someone with autism. And I don’t have an agenda – it is definitely an “own voices” thing.

      Liked by 1 person

  3. This is such a great, and important post, thank you for writing it. It’s SO important to actually research well what you’re talking about in your stories, and to actually see people, talk, have a conversation and really try to understand things by seeing them yourself and trying to talk to people being in the situation you want to talk about. Reading is good, but nothing like interviewing and real-life research to give more dimension to your story and what you’re talking about. Lovely post šŸ™‚

    Liked by 1 person

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