Life
What You Shouldn't Say About My Autistic Daughter
There is a lot of hype around autism these days, and parents of children on the autism spectrum hear it all. "What causes autism?" "Can we cure it?" "Do we even want to cure it?" "If we say “neurotypical,” are we implying that autistic people are abnormal?" Even if you don’t have experience with autism yourself, chances are you’ve heard some variation of this omnipresent concern trolling. The list actually makes my eye twitch, which is why I'd appreciate if people stopped saying certain things about my autistic kid.
I am willing to accept the possibility that the hype has always been there, and I’m only aware of it now because I’m a mama to an autistic kiddo. Which, in addition to using identity-first language, has taught me so many other things.
In true mama-bear form, I have become one of those people who always talks about my kid. I spend an inordinate amount of time determining the functions of my 7 year old’s various behaviors. This determination requires a lot of external validation from friends (with or without kids), teachers, therapists, principals, and, well, you get the idea. That equals a whole heck of a lot of gabbing about my girl. I tend to be an external processor and hyper-analyzer anyway but, as parent to an autistic kiddo, this hyper-awareness and oversharing is a part of the job description.
Parents of autistic kids have to learn how to become advocates. They've often fought long and hard for someone to listen to their cries for help. Unfortunately, parents are often repeatedly gaslighted by certain individuals (like pediatricians) who are supposed to be helping us find resources. I can't even track how many times we were told our experiences with our daughter were just us being overly-sensitive or incompetent parents. It wasn't until we had a non-autistic kiddo that we realized it was the professionals who were wrong, not us.
The ability to talk to any and every body about our kid's struggles enabled us to find otherwise hidden resources. However, being so willing to engage also opens us up to unwanted, unnecessary, and sometimes downright offensive advice. The truth is, I’m way passed caring how well-meaning someone is. The knowledge that my kid is autistic is not license for you to leave common courtesy at home.
So, since you can’t read my mind, I’ve put together this handy-dandy (certainly not exhaustive) list which will help you make better choices next time your tongue is just itching to spread that fine bit of wisdom.
"She Doesn't Look It!"
Really? How do autistic kids look? Is this supposed to be a compliment of some sort? Please think about what you’re actually saying. Either my kid is amazing looking and all other autistic kids are ridiculous looking or, well, what exactly? I’m not quite sure what you’re getting at.
“But She's So Smart!"
Um? Guyz? GUISE! We have got to stop associating disability with low intelligence. It's just not true. And. So. Not. OK.
“See, That's Why We Don't Vaccinate Our Kids"
One guy made it up when most of us millennials were barely, if even, in high school. There is no evidence, and there never has been, that vaccines cause autism. Just stop.
“I Read This Study That Probiotics Cure Kids With Autism!"
Seriously? Yogurt is the magic cure-all? Should we be taking a bath in it every single day? Is that going to change the structure of my kid’s brain?
I know people are really concerned about my kid’s gut health, but how about you try it first and get back to me?
Also? My kid doesn't need to be cured.
“Whoa! Really? She Must Be Really High-Functioning!"
First off, exclaiming incredulously feels pretty shaming. That may not be everyone’s experience, but it certainly is mine. Please don’t do it.
Secondly, I truly do get that most people mean this as a compliment. However, think about this with me for a second. Even if you ignore what this implies about all other autistic people, “high functioning” is ableist language.
Finally, exclamations like these put me in the craptastic position of either contradicting you: “Actually, before we came to the park today she tore off all her clothes, screeched at the top of her lungs for 30 minutes while pulling knives out of the drawer and ruminating vociferously about why everyone keeps trying to prevent her from reading books.”
Or:
Smiling and nodding politely while quietly questioning every decision I’ve ever made as a parent because clearly I’m the one with the problem if I think she has challenges.
"You Just Need To Show Her Who's Boss"
This one is particularly irksome.
Hint: if someone is sharing challenging behavior their kid is exhibiting, they’re probably looking for some reassurance, or perhaps help finding resources. Telling them what I can only imagine would amount to smacking a child into submission, is not only frighteningly abusive (especially when children with disabilities are at greater risk for abuse) but incredibly invalidating.
In case there’s any question, let me assure you: I’m not making her symptoms up. My leniency, or lack thereof, as a disciplinarian has nothing to do with her autism.
“That Must Be Really Hard For You Guys"
There is actually nothing wrong with this statement. It’s a good start in showing empathy and support.
However, if you’re going to say this, consider following it up with someone along the lines of, “Let me watch your kids for the night so you guys can have an adult conversation.”
OK? Thanks.
So, If You Can't Say Something Nice...
I can’t stress this enough: autistic brains are not damaged brains. There is nothing to cure. We allistics (i.e. non-Autistics) can get a heck of a lot better about making the effort to learn their language instead of forcing them to learn ours.
The bottom line is much like Thumper’s sage wisdom: if you don’t want someone to say it about your kid, you should probably refrain from saying it about my autistic kid.
If you have the number to a free in-home BCBA who integrates behaviorism with unconditional positive regard and love, I’ll take it! But please keep your cure-alls, vaccination theories, and amazement at my child’s ability to walk and talk (or curiosity about what special genius powers she has) to yourself.
