An Impassioned Plea from the Mom of an Autistic Kid: Please Include Us in Your Plans
My second son, Walker, is six years old. Like most kids his age, he loves playing pretend, using his iPad, and being outside, especially if there is water involved. He isn’t a big fan of vegetables, but he can put away an entire pint of blueberries. He is missing a bunch of teeth, his legs are getting longer and skinnier by the minute, and he outgrows shoes in the blink of an eye.
He’s very much like your typical six-year-old first grade student in many ways, but my boy is autistic. When he was not quite three, we got his official diagnosis of autism spectrum disorder, and we embarked on a very purposeful journey to help him be as happy and successful as possible without ever attempting to quell the autistic quirks that make Walker, Walker.
Three years later, he is literally the coolest kid on earth. I know you’ll think I’m biased, but I think I’m right about this. He is just a happy, quirky little weirdo in the best ways, and I dare anyone to meet him and not just adore him. He’s light in human form. A living sunbeam. He’s also a giant pain in the butt, as all kids are entitled to be.
I know that when it comes to Walker and his neurotypical peers, they have so many more similarities than differences.
But that’s because I understand autism. I know that being autistic means many different things for different people, and knowing that Walker is autistic tells you almost nothing about him. You still have to get to know him, just like any neurotypical kid. When you do, you’ll find that he’s housing a universe of potential, and we have only begun to scratch the surface of how awesome he is going to be. (Mind-boggling, because he’s so amazing already!)
Unfortunately, a lot of people hear the world “autism” and immediately start using their limited understanding of the spectrum to make assumptions and judgments. They think of autistic people as a homogenous group of almost-identical people with more limitations than capabilities.
That can lead to the hardest part of being an atypical kiddo: exclusion.
I can’t tell you how many times people have assumed that Walker hates loud noises, bright lights and crowds, and by extension, will hate birthday parties, church events, special occasions, and fun outings.
But guess what? Walker doesn’t hate any of those things! He can hang during fireworks. He loves watching a movie at the theatre. This year he attended vacation Bible school at a local church, and he LOVED shouting, singing, making crafts and playing with the hordes of children.
Sure, he sometimes needs a break. Once in a while, he will recognize his limits and move away from the action to play on his own and just chill with his iPad. One of the things we have worked very hard on with Walker is empowering him to walk away instead of melting down. At only six years old, he does a great job of remembering that much of the time.
But he wants to be there. Even if he is on the sidelines observing, he wants to be invited. He can find joy in watching other kids to things he doesn’t want to do himself. He’s like his mom in that regard. I’m never happier than when I’m standing on the edge of a dance floor watching other wedding guests cut a rug. Some of us are just born observers.
Once in a while, my boy might jump in and do something nobody expected. He literally begged to ride the 110-foot, 28 mile per hour zip line ride when we attended a nighttime event at our local zoo. I did not see that coming, and I’m his mother!
Walker is so special and delightful to me, but he isn’t an outlier when it comes to atypical kids. Children who live with differences want to be included in your plans, and it’s cruel to choose not to invite them based solely on your (possibly wildly incorrect!) perception of their abilities.
One of the mantras we live by when making choices for Walker is, “presume competence.” We use this idea when we have the chance to include other people, too.
Presuming competence just means that when you approach a person whose ability to thrive comfortably in a certain situation is not immediately known to you, you approach them in a way that assumes they can and will learn, understand and participate in the activity. Let them decide whether it’s a good idea for them.
You can make it clear that you’re willing to offer any accommodations they’re comfortable asking for — just make sure you do this with a respectful, upbeat tone. Keep it matter-of-fact. Disabilities and differences are not shameful, and we don’t have to tiptoe around them like they’re dirty little secrets.
Here’s the thing I want you to take away from this: It is not hard to be Walker’s mom. Loving him and advocating for him is easy. I practically worship him. He’s perfect to me.
But it is hard to know that he has to live in a world where the same quirks that make me adore him are the traits that will make other people misunderstand or pre-judge him. Knowing I can’t protect him from ignorance and exclusion makes my heart feel like it might just fall to pieces.
And to be totally blunt, Walker usually appears typical to outsiders. I know that spares him a lot of the time. Kids whose differences and disabilities are more immediately obvious will receive even more judgment, and that totally sucks.
It’s not okay. It’s not fair.
The atypical kids in your circles are full of wonder and joy and potential and love and magic, and it’s your job as a parent to help your neurotypical and non-disabled kids see that. That starts with YOU choosing to understand and believe it, too.
Everyone deserves an invitation. Everyone deserves a seat at the table. Everyone deserves to be seen for exactly who they are and celebrated, even if their accomplishments look different than you might expect.
Give kids like mine a chance to challenge your perception of people who exist outside the box of what we have deemed “average.” Who wants to strive to be average, anyway? Including everyone isn’t just good for the outliers — it makes everyone better. It causes the rest of us to see things we didn’t see before. It encourages us to raise the bar and advocate for reasonable accommodations for all, even if we don’t personally need them.
An equally important part of presuming competence is to accept that a person knows their limits better than you do. Graciously accept a polite “no, thank you” and don’t be offended. My kid might hear about your birthday plans and say, “Um, thanks, but no way.” But I guarantee he will still be happy to know that you wanted him there. He’s just a kid, after all — and like any other kid, he wants to feel like part of the group.
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