Ambassadors

Recently, a friend of mine mentioned me in his radio broadcast, complimenting my online narration of life with Alex. (Thanks, CJ!) Quite sensitively, he did not reveal Alex's diagnosis publicly.

Many parents don't disclose their children's autism; schools are bound by confidentiality laws and CAN'T reveal such confidential information beyond authorized staff.  Of course, medical diagnoses should be confidential, but in some cases, many parents choose a more open approach.

Personally, I'm in the "no secrets" camp: I tell everyone he's autistic.

There are plenty of reasons why I do. Firstly, I'd like every school staff member to know how to approach him. School should be a safe and welcome environment for all students, even if (especially if) they have special needs. To that end, I also want students to know. Alex isn't going to behave like neurotypical kids, so they shouldn't expect him to do so.

Yes, it's a label--gasp!--but if that label lets people know how to approach him, lets classmates know that he's not just the weird kid, then that label is helpful. And what's more...the word "autistic" doesn't scare me. I think it scares less and less people anymore.

When I tell people "He's autistic," most of the time, they don't look appalled or scared. Sometimes they get more cautious; sometimes they even get excited, because they get it. But mostly it's curiosity and courtesy--they know that autism is something different, but they don't know exactly what to do.

This is the part I love. This is my mission.

My newfound goal in life is to educate people on autism: what it is, why (we think) it happens, how it works, and most importantly, how to interact with an autistic person. Alex is part of a generation--a BIG generation--that will enter adulthood and the global community. He has the ability to do a job and have a career, but only if businesses understand that he's not a typical worker. He may not make small talk or do well in conversations with clients. But he'll sit at a computer and plug away at a problem until it's solved.

But before he gets there, he needs to go to school. He needs peers who will accept him. He needs to be welcome in extracurricular activities. And he needs to feel success, not rejection.

And in addition to that, he's going to interact with people in the community. At the grocery store, a restaurant, at the swim club--the more people who know about autism, the better off he'll be. (I cannot count how many servers and restaurant managers have genially welcomed Alex into their restaurant while he brings in his own Chili's takeout box.)

Okay, this is my favorite part, really. Alex and I--our family--are ambassadors. We talk about autism. We show autism. We let people know what they can do. I will talk to ANYONE about any aspect of autism. I try my best to demystify it. I try to say, "It's not a monster in the closet! It's him--my beautiful boy."

When Alex needs input in public, I give it to him. I'll pick him up and spin him, squeeze his joints, I'll even squeeze his head the way he likes it. That last one may turn heads, I know, but I'd welcome the conversation. When I need to talk to him, I get down on his level and I explain. I don't lower my voice, I don't curtail my instruction. I want people to hear and see. I make eye contact and I smile at people.

Because I'm damn proud of my son. And I want people to see him. I want people to know about autism, to meet him and fall in love, and to see that while autism may make him different, it doesn't make him less.

And I hope that if people meet and love him, they'll give other autistic kids a chance. Maybe they'll meet someone with more severe autism, but they'll recognize something similar. Maybe they'll think twice before judging the parents of the kid having a meltdown in public. Maybe they'll encourage their own child to be friendly with other children with special needs.

So I will sing the song of autism for all to hear! Because my child deserves to meet people who will recognize it and sing along.

Note: This is a sort of follow-up to my last post, Taking Notice. Please check that one, too, if you haven't already!