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?”
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.
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.