Why I Say Something

I come across this discussion often in "autism world," which for me right now usually is online rather than with other parents I know (still working on that): Parents often debate whether or not they should immediately disclose that their child has autism, i.e. when they're at a public place like a park or library. A common argument is often No, because I shouldn't have to apologize/explain/make excuses for my child.

I get this. I get that we should not walk around immediately taking everyone else's opinion into account and feeling as if we have to divulge our child's "issues" with strangers in order to be socially acceptable. I get that sometimes we just don't want to get into the discussion, that sometimes people just need to deal with it and accept our kids at face value.

So far for me, though, that approach just doesn't work. Ethan is a kid who can just "blend in" if he's having a quick encounter with someone at the store or playing on the playground. But any time we're doing something that involves a bit more conversation; play time; one-on-one with another person or adult, like the hairdresser or the mom and her son at the Barnes & Noble train table or the play group at the library, I find myself getting into the autism discussion. In the process, I've realized two things:

1) People need to see what autism looks like and are often surprised at what autism looks like. They need to broaden their picture of what autism is, so they don't just think "Rain Main" or someone flapping their hands or banging their head on the floor. They need (and I need) to see as many autisms as possible to truly understand that saying about there being "No one autism."

2) Everyone seems to have an autism or special needs story. And once I open up about Ethan, their story inevitably comes pouring out.

When Ethan and I are out and about, and he's around other kids and I disclose that he's on the spectrum to other moms, I inevitably get one of two reactions. Either they say, "Really? I wouldn't have known" or they kind of nod and smile as if to acknowledge, "Oh! I knew something was off but that helps explain it better."

If my son is having a meltdown about something relatively inconsequential, am I sharing his background because I just don't want people to think he's a brat? Is it self-preservation? Perhaps, but I'm also helping them understand and see in the flesh that transitions are hard for people with ASD, or that they sometimes have fixations on things we might not understand. If my son is announcing, "That other kid needs to go away!" while he's playing at the train table, do I explain about autism because I don't want the other mom to think he's rude or that I blithely allow him to pronounce rude statements that might hurt another child's feelings? I suppose...but I also can take the moment to explain that he gets anxious around other kids and actually wants to play, but needs some time to warm up to the idea.

Our interactions leave people knowing just a little bit more about autism than they did before. That has to be a good thing.

As for the stories. I've been amazed at the stories. I tell the hairdresser about my son and suddenly she's telling me about her son, who is hearing impaired. I ask the librarian for some research info for Ethan's IEP and then learn her own child has Asperger's. There was the mom in Barnes & Noble who shared about her son's feeding issues and how she worried about him being small for his age...the mom in McDonalds who shared about her sister and nephew with special needs...the mom at the park and mom at the party who have brothers with autism.

Everyone has a story. Somehow, when I open my mouth and decide to share a bit of ours, they feel free to do the same. In the process, I'm reminded that there are so many of us out there facing challenges, that there are a million stories behind the quick smiles and surface conversations we exchange.

This is why I say something.