Growing up I remember a lot of discussions about it not mattering what other people thought. But I also remember learning somewhere around junior high that much of your social happiness does depend upon what other people think. In-group or out-group may be a perception but it’s a perception that carries a tremendous amount of weight. Onto college you quickly learn that much of the academic process is about perspective; it’s the professor’s perspective that determines your final grade as well as what letters of reference you receive or what graduate school you are accepted into or what job offer you receive…or don’t. So on and so forth.
As a parent you can pretend like other people’s opinions don’t matter, but the truth is that at least in my case I totally and completely enjoyed the compliments I received when Ryley was little—how pretty she was or how cute her outfit was. Same thing held true when we started taking Caden out in public—I loved hearing what an adorable blond haired blue eyed little boy he was. I also enjoyed when Ryley would be complimented on her manners or when people would just generally notice that I was really trying to be a good parent. Again so on and so forth.
One of our most public displays of autism has been Caden’s pacifier. Honestly the pacifier isn’t that big of a deal to me per se because it has brought him a great deal of comfort as a transition and safety item. Caden’s pacifier and blankie have become almost trademark for him. But earlier this year a 5 year old pointed out to me that “Caden was too old” for a binky and I started to worry that his pacifier might be a source of bullying or teasing at school. I also noticed that we were frequently hearing comments or receiving unsolicited feedback about the pacifier in public.
I started ordering different types of chewies for him to try. I wish I could say that this was entirely for Caden’s benefit, but it was selfish as well—I want people to just see how wonderful and cute and sweet Caden is. A few chewies were an epic FAIL, but we found one brand that he loves. It’s an adorable red train that comes on a break-away necklace that he can use as a fidget toy or as a chewy. He transitioned in public almost immediately. Don’t get me wrong we always have the pacifier on standby; he still uses it at night and any time we need to pull out the “big guns.” This was a huge step for Caden, though, and we were both amazed and proud of how easily he adapted to the chewy when we found the right one. And because I’ve already admitted to having some selfish motives to this move I honestly thought the chewy was somehow more socially acceptable. Then last week happened….
There was a guest in Caden’s classroom. Another student invited his coach to class for show-and-tell. By all accounts the coach was pretty remarkable with the kids—learned all of their names in a matter of minutes and was working his way around the room making sure everyone was sitting properly so that they could really listen to his message. When he got to Caden he kindly stated that he was sure that the necklace tasted yummy, but that it wasn’t appropriate to have things in our mouth or to chew on them.
In terms of social acceptability I realized that once again we have an epic FAIL. I’d like to be angry and say that he should have known something was different by the mere fact that Caden had a large black service dog lying on his lap, but the fact is I have to face reality---the chewy isn’t any more socially known or acceptable than the pacifier was. Most of society has NO idea what a huge move this was for Caden or how amazing the chewy is for him—this was a developmental leap and is one of those “tools” that helps us avoid anxiety medications for the moment as well as allows Caden to function more “normally” in public.
I’d like to argue that others’ perceptions don’t matter, but it’s others who I have to worry about making a decision to friend or bully my sweet son. I’d like to argue that I’ll just instill a deep sense of identity and confidence in my baby boy, but I don’t know how to explain the difference between happy and sad to him, let alone such deep and abstract emotions. I’d like to send out a notice that says starting tomorrow we simply aren’t leaving home, but that wouldn’t be realistic or helpful for any of us.
What I am going to do instead is vow to continue working on others’ perceptions. A few of you are going to read this blog and a few more will share with others and maybe you’ll learn a thing or two that will make you look at things you see in public differently. Last week I talked about stims in my public speaking class and actually had a student on Friday say “wow, I never realized how much I do this—guess I can’t judge others when they are nervous.” Maybe she’ll tell her roommates when they start to make fun of someone else or tell a family member or another friend. I know Caden’s teacher has talked about chewies in his class—that’s 20-some kids who now know that chewies are okay sometimes and maybe they’ll share that info with their families.
When it comes down to it perceptions do matter, but perceptions are learned and maybe that’s where I’m supposed to make a difference in life. I’m not sure that this is even about autism anymore; it’s about acceptance and while I don’t think I can change the world I’m not going to stop trying. I have to do this for my kids because one of these days they are going to realize that others’ perceptions do matter. Maybe in the end it’ll come down to the stories that we tell and the experiences that we share. At the moment my sweet child thinks that I can protect him from the world---and that’s a perception that is going to influence everything I do tomorrow, this week, next month and so on.