Who do you tell?

A wonderful mom, writer, and friend asked me recently, "How do you decide who you tell that Henry has autism? And when?"

Whew. If only I knew the answer to that question. As I shared with her, I am still figuring it out on an almost-daily basis. I walk a fine line of not wanting others to pity him (therefore, not mentioning it), but also not wanting to treat ASD as shameful (thus, wanting to mention it). I cannot claim what I do is the best way, but I can share what seems to have worked for us thus far.

Awhile back Henry and I were in the grocery store check-out when he suddenly shrieked, which isn't altogether uncommon in a building with high ceilings, because he loves the sound of his voice echoing. (The mall is truly a wonder for him to behold.) And, other times, it's an attempt to express frustration even though he is certainly verbal. I honestly don't remember why he shrieked that day, but the point is that it was a shrill, startling sound. The check-out lady, one we didn't know, looked at me sympathetically and asked, "Does he do that a lot?" and added something about her concern for my ears.

In about two seconds my mind raced.
What do I say?
Do I tell her?
Is this the first time I tell a stranger?
Am I angry?
No. So what am I feeling?
Somehow my brain got words to lips and I answered, "Um, no. Henry actually has autism, and this is something we're working on."

I feel for the lady. I really do. She looked as if she wanted to crawl in a hole and die. But it led to a nice conversation, and I left feeling as if I had checked an item off my list. Ok, that was a first. I told a stranger and survived.

On the other hand, some scenarios require no thinking. A few weeks ago, the day of our autism walk, we took Henry to an urgent care clinic. When the PA came in, I did not even pause before mentioning autism. Henry was sick and in an unfamiliar place with unfamiliar care providers. I honestly did not know what to expect from him, and I told her as much. When she reached to feel his glands, would he flinch? Scream? I didn't know. (He was just fine, didn't move a muscle. Perhaps he felt too bad to care.) Without question, some people need to know right away what they are dealing with.

When do we tell his school friends? Parents at preschool? I wait for what feels like natural occasions. Yesterday, for instance, I explained to a few parents why Henry wasn't wearing a costume when they asked what he was going to be for Halloween. I think (I hope) I handled it with grace, matter-of-factly explaining the situation; it definitely felt natural.

I know these three conversations aren't my last, and I'll likely not get it right every time, but I'm doing my best to sort it out as I go.

[I also want to add that I use "I" here not because I'm in this alone, but because it's not fair to speak for Keith. He is an excellent partner and father, but he may not feel exactly what I feel. We have a family story as well as our own. His is his own to tell.]