If you're the caregiver of a person with autism, chances are you've referred to playing the “autism card" in conversation with friends or family. Or maybe you’ve even been the target of a derogatory reference to it.
Simply put, the autism card is the figurative card that you can produce to explain — from your perspective — yourself, your child, and their limitations. It’s the metaphorical doctor's note that excuses your child from participating in the rope climb, or the sheepish explanation for why you know sooo much about the history of The Wiggles.
How you use it and how it’s perceived varies drastically depending upon who you are and your audience.
Without me launching into a dissertation on privilege and ableism, let me just say that, if you're on the outside looking in, I can understand why playing the autism card might seem exploitative. But for a parent of an autistic child, it can actually be helpful.
For instance, have you ever seen a car pull into a disability parking spot at the store, and felt a wave of doubt? That guy doesn't look disabled, you may have thought. His car has a placard, but it’s probably his mother's car or something, right? Even when he walks around to the other side of the car, and his daughter gets out, you still don't see any disability. You get that sense that maybe this guy is getting away with something. Exploiting the system. And maybe you say something about it.
Most likely, the answer to your, “Hey! You can't park that there!” will be some version of the disability or autism card played on you.
Disability? His daughter seems just fine.
Some people refer to autism as an invisible disability. In many cases, you can't immediately see the struggle. You don't see low muscle tone or elopement dangers.
But maybe then you see the father and daughter inside the store. They’re shopping together. She sits in the race car shopping cart even though she's clearly too tall for it. Maybe you think to yourself, “That's what's wrong with kids today. Parents never tell them ‘no.’”
Maybe you even say something like, “I'm not sure that race car is big enough for her.”
But what you don’t know is that if she's not sitting in the race car, she can't ride in a cart at all. She'll have to hold her dad's hand, or he'll have to push and pull her through the store. And he’ll have to shop one-handed as she gets increasingly more frustrated, and ultimately has a meltdown.
1 in every 68 children in the U.S. has been identified with autism spectrum disorder, or ASD. And 1 in 6 has a developmental disability, such as speech and language impairments, or cerebral palsy.]
Meltdowns can also draw stares. More judgment, more thoughts like, “That's the problem with kids today. Not enough discipline.”
It’s much easier to say, “My daughter has autism. She needs to ride in the cart."
The man plays the autism card, and saves himself the energy of having to explain it all to you. Maybe it's an easier way for him to say a lot without having to tell his life story.
People are naturally skeptical of others trying to take an unfair advantage: cutting in line, getting a good parking place, indulging their kids instead of disciplining them. And for every autism card left not played, these people leave the encounter convinced they were right.
I'm not suggesting that you barge into every venue and announce, “AUTISM IS HERE! MAKE WAY!” But I am suggesting that we not be so reluctant to gain an advantage for our kids. Not exploit that advantage, but rather regain some lost ground that’s always there when the playing field is tilted in someone else's favor. In almost everyone else's favor.
A plea for patience and understanding
My daughter needs that patience and understanding to give her a fair chance at “normalcy.” And that's why I play her autism card.
I play it any time I have to make a doctor's appointment for her, where I know we'll be penned into a waiting room for long periods of time. Any time I know I'll have to fill out forms while simultaneously watching her (I always ask for the forms in advance). I play it when I call to get tickets to a show and ask, “Is there aisle seating available? My daughter has autism, and we need to be able to go to the bathroom at a moment's notice.” That way, she can get in and out without having to swim through an over-stimulating flow of people to reach her seat.
I play it when I sit in a crowded venue when we go watch her big sister sing or perform for school, so that the people around us know we're keeping our eyes out. I play it and I tell them, “If she gets too close, just let us know.”
It's not to gain an unfair advantage, and it's not a get-out-of-jail-free card. It's a plea for patience and understanding. Announcing the diagnosis is accepting the diagnosis. It's not being ashamed of the diagnosis. It's recognizing the limitations or obstacles that autism can sometimes place in the path of kids like my daughter, Lily. Instead of backing down from them, we address them in a way that sets her up for success, and allows her to participate more fully in her own life.
I understand parents who don't want to play the autism card. It can make you feel guilty. It can make you feel like people think you're exploiting the system, like you're gaining an unfair advantage.
I guess my response to that would be two-pronged. First, by playing the autism card, you're potentially changing this stranger's opinion, not just of your parenting, but also of your child. In their eyes, perhaps she's no longer a spoiled brat, but a struggling child who’s just had enough.
But, more importantly, consider whose side you're on. If you're denying your child a chance to play on a more even field because you don't want to upset a stranger, that's probably the wrong side.
Playing the autism card is, by definition, creating awareness. It's an acceptance of the diagnosis, and an understanding of the limitations of your child. It's the easiest form of advocacy. And it can really help.
Jim Walter is a single dad to two daughters, one of whom has autism. Follow his family’s journey with autism at his blog, Just a Lil Blog!