In honor of upcoming Autism Awareness Month, this is the first in a series of posts about awareness and how we can all take part.
Don’t you just hate it when people spout how they love everyone, how they’re nice and inclusive and tolerant, yet leave your autistic kid out of stuff? Do you wonder why people can’t just remember how it would feel if their kid was left out?
I do. A lot.
Families with kids with autism deal with this all the time. People say all the right things to us, but when it comes down to business, there we are, at home, and our kid isn’t invited to yet another gathering. Friends, family, doesn’t matter who. People tend to leave out the kids who are different.
To be clear, I usually don’t cover stuff here on the blog that’s confrontational. I have zero interest in attracting crowds to argue with me about stuff, but with Autism Awareness Month coming soon, I’m going to be doing some posts about the reality of life with autism. I’m starting today with the reality of social events. The reality is that this kind of thing shows us who our friends are, who we can really count on. The list isn’t as big as you’d think, but the gift of that is that we know it. Not all of us get so lucky as to know who we can and can’t trust or depend upon.
When our son was young, we expected to be left out of stuff. We didn’t like it, but we understood it somewhat. People didn’t know what to do, our son was unpredictable and we didn’t know what to do either. And people can be selfish — they don’t want to have to deal with the possibility of our son hiding under a table and they don’t want their party ruined. I got it…really…but it was still hard. Autism awareness is so needed yet those of us in the trenches are the ones with the least time to try to do it.
Now, our son is old enough to where people should be over all that garbage, yet it still happens. We’re not doing our kids any favors though when we don’t invite the different people. We aren’t teaching tolerance or acceptance — or that ‘love’ we hear about in church — when we just say “we won’t invite him.” I like to think manners and just being kind are frequently inherent traits we all have, and kids have them in a lot more abundance than adults, until they’re squashed.
Instead of celebrating differences or just tolerating a kid with autism for a few hours, we hide from them. Instead of teaching our children that everyone needs friends, we teach them it’s okay to leave out those that are different, missing out on a very valuable lesson. Instead of accepting that everyone will raise their kids differently, we set standards for other people and if they don’t parent your way, we think they’re wrong. This is why autism awareness is for all of us. Or maybe it’s just basic kindness.
We’re fortunate anymore in that we’ve made some great friends over the last several years, adding to some long-time friends who are the most supportive people a family could ask for. Our son doesn’t lack opportunities to go places with us, and a lot of people give him the time to get to know him and appreciate him for what he is. They look past how we parent him, how he might be different and his sometimes sarcastic behavior. They appreciate him for what he is…and isn’t that what we all want?
Years ago, we stood in the pick-up line at school and watched parents hand out invitations as kids came out the gate. You get an invite, you get an invite, you get an invite…you don’t get an invite… It would even happen at church! One bastion of Christianity told people “If your son plays with <my son>, he’s not allowed to play with <her son.>” It’s crazy. Then you get the friend of double-digit years who tells you that they aren’t going to call you anymore because you can’t have a phone call without the son interrupting. Uhm, he’s four, and yes, autism has a way of doing that. How I wish that was one of my biggest problems. Thankfully, she stopped calling me; sometimes, it’s like the trash takes itself out. I don’t like shallow people anyway, so it was nice to have one less thing to worry about. You want people in your life who are going to remember your kid is just like all the other kids, deserving of love, of attention, invites, and of having his birthday remembered.
Autism does that. It shines a light on what and who is important. It shows you who is worth your time. It makes you focus on your family, and while it isn’t all roses, sometimes more of us need to focus on our family instead of other things. It also hardens you in some regards. You develop a thicker skin and realize that those who forget the birthdays, those who forget the invites and those who judge you really aren’t worth your time. You don’t take it personal, you just realize you don’t have to take it at all.
So if you judge a kid with autism, exclude him and his family or think secretly to yourself “If you were my kid, you wouldn’t be like that,” you’re the problem, not the kid. If you don’t like someone because you don’t get their behavior and don’t bother to try to learn, you’re the problem. Don’t like my kid for things that aren’t really his fault? You’re the problem, not him.
In celebration of Autism Awareness Month, start small.
Start with looking at how you treat kids with autism. Awareness doesn’t have to be putting puzzle piece pins on your clothes or magnets on your car; it can be a small, internal acknowledgement of your own perceptions. Awareness starts with each one of us.
**The photo in this piece is one I took of a pin that was given to me by a very dear friend. We’re long time Disney lovers and the old special assistance program allowed my son to get used to some line-waiting skills while still being a kid like every other. This pin symbolizes so much to me and it will be seen a lot during autism awareness month! If you’re interested in our autism story, read here. Want to learn more about autism overall? Here’s my favorite site.**