Or: The Danger of Misrepresentation.
White Fang is into The Big Bang Theory right now. For those of you who aren’t familiar with the sitcom, it’s an American program focusing on the lives of 4 geniuses who are brilliant at their jobs, but not so much at love and interpersonal relationships. There are many ways in which this is a program that really appeals to geeks (tons of references to science and science fiction), as well as autists, because while we don’t get some of the references, we definitely get the moments of social and emotional awkwardness.
One of the characters in particular, Sheldon, appears to in fact have Asperger’s Syndrome; but the show never addresses this directly, and there are certain indicators that would really “seal the deal” for those of us with ASD — like him stimming or having certain intense phobias — that aren’t displayed or mentioned in the script. And the producers/directors/writers of the show have stated that, while they see how Sheldon’s traits would encourage viewers to consider him as Asperger’s, that’s not their intention for this character.
So, while I don’t necessarily have a problem with Sheldon existing, I do take slight issue with the way he’s 90% Asperger’s, but isn’t “intended” to be.
Recently, there have been more TV shows and novels trying to portray people with autism in a favorable light, to help build awareness and understanding of the disorders. (That’s right, it’s a disorder or a syndrome — not a disease.) And while I think this is something that we certainly need in our society, it concerns me because I believe most of these people aren’t going about it in the right way.
Let’s talk about the “diversity” platform for a minute here. Is it just me, or does the “tolerance” movement seem to be championed by wealthy, NeuroTypical, physically healthy, college-educated people? Who can’t really relate to what it’s like to be a stay-at-home ASD parent on one income, with an autistic teenager and a special needs toddler? And yet supposedly they know just what will make White Fang’s education more effective, Muffin’s services more productive, make me feel the world is truly growing in understanding my children?
(Hashtag, not buying it.)
Muffin is not ASD, but he is special needs because of developmental disorders — just not the kind people usually think of with that term. Muffin was born 4 weeks premature, with torticollis, jaundice, acid reflux, and low birth weight. It has been a hard road for our little guy. The torticollis means he has asymmetry in the muscles of his neck, which led to delays in crawling, walking, jumping, and kicking. The acid reflux and his low birth weight meant he had to be on special formula for the first year of his life. We’ve been in and out of doctors’ offices, physical therapy clinics, and specialist appointments since the day he came home from the hospital. (Which happened when he was 9 days old, after being in the NICU from about the second he was born.)
We have managed all of this with one car, limited health insurance, an unusual work schedule (my husband’s), and White Fang learning to babysit. No nannies or in-home assistance, and certainly not on a budget that most politicians would grasp.
Anyway, my point is this — so why/how would I see myself in a film or a book with doctors who get it perfect the first time, a household income of 50 grand, reliable transportation, and kids that are always compliant with whatever treatments are recommended for them?
And how/why would I see myself in a portrayal of girls/women who get diagnosed overnight by some amazing specialist, and suddenly everyone in their lives gets their “quirks”, and lets them stim without saying anything, and be alone for hours on end and… Yeah, no. It doesn’t go like that.
As much as I wish the entire NT world would become truly tolerant of ASD, this is not realistic. So, here’s what we need more of in fiction that’s hoping to bridge the gap:
- Characters who are diagnosed but still have challenges. Being ASD in a world that’s threatening to your very being (nature can be overstimulating, folks) means we are not magically “made all better” by taking anti-anxiety meds and attending counseling. (Without creating any spoilers for my own work, a lot of Volume 2 will focus on accurate autism representation.)
- An expanding depiction of developmental disorders. For example, Muffin’s torticollis. As well as speech disorders, dyslexia, phobias, social anxiety, ADHD, and sensory perception difficulties. (We seriously need fictional parents trying to raise children who won’t eat anything orange or can’t wear clothes made of polyester.)
- Fiction that treats all of this as someone’s normal, and not something to be feared or eliminated. Getting rid of the negative parts of my or White Fang’s autism might also make our positive (and unique) traits vanish. It’s about finding a healthy balance, not a “cure.”
- Fiction that is honest about how challenging all this can be for parents. But also making it clear that so many families would not trade their experience for a “regular” life.
So, we also need more people in the know writing their stories. Is it your relative, friend, neighbor, co-worker in this situation? Ask them if they’d mind being interviewed for a magazine article, blog post, short story, or future novel. (A lot of them will say yes.)
Is it you (trying to live on Mars when you’re actually from Pluto)? Tell your story. Don’t be afraid. Blog, or vlog. Allow people to interview you. (You can do it. Believe in yourself.)
And if you’re completely NT, and don’t happen to know anyone who’s ASD (or developmentally challenged), then please get it out of your head that you know what’s best for us.
And if you already know that, thank you. Feel free to join our cause. We’d be happy to have you.
Just bring lots of patience, and cake, blankets, and books, and don’t take it personally if we can’t look you in the eye.