About a year and a half ago I realized that one day I would need to talk to my kids about Autism and their own diagnoses that put them on the spectrum. I’m not usually one to have that kind of foresight, but I had just messed up some other big conversations…and I could see Andrew’s awareness growing. So, I decided to go ahead and prepare for it. I did some reading, went to a few seminars to hear adults talk about their lives with autism, and talked to a few teachers and parents. Then, little by little I started to lay the ground work.
Instead of starting with the name of the diagnosis, I started talking to Andrew about the ways he and Isaac are different from their peers. I told Andrew that he has speech, occupational and physical therapists and why…and that not all kids need those services. When I had meetings at the school to discuss Andrew’s IEP, I would tell him exactly that: “I am going to your school today to work on your IEP.” and I would explain what that meant. Last year when I brought it up he said “you’re going to make sure I get the things I need?” He said it in a very open, non-valuative way. “Yes”, I replied, “that’s exactly what I’m going to do.”
He knows he was a late talker, that he doesn’t make effective eye-contact, and that he thinks about things differently. He knows that Isaac still has trouble talking and making friends and that Isaac needs additional services too. And, for the most part, Andrew doesn’t seem to care. He doesn’t have a strong sense of shame about things that are hard for him. There have been times that these conversations have made him uncomfortable…but he’s always rebounded quite quickly. And in general, he thinks he’s a pretty great person.
I can’t tell if his acceptance of his delays is just part of who he is, if that’s, somehow, part of the delay… like how he doesn’t understand other social ‘norms’. You’re not suppose to laugh in people faces, pick your nose in public, tell strangers you need to poop. Perhaps the lack of shame he feels about boogers and poop also applies to the lack of shame he feels about his delays. Perhaps. But, I’d also like to think that I’ve played some small role in his attitude about himself. I’d like to think that telling him openly about areas that he needs support with…while still thinking that he’s an absolutely phenomenal person…has helped too.
Yesterday after church, the conversation finally all came together. We were driving into Manhattan, when it came up. He started asking me about “Autcraft”, the minecraft game he plays online. Autcraft is a version of minecraft for kids with autism. He starting by asking what “aut” means and I told him “aut” is short for “autism”. He asked why it was called that and I explained that the person that made the Autcraft server wanted a safe place for kids with autism to play minecraft.
“Do you have to have autism to be on Autcraft?”
“Most of the people on Autcraft have autism, yes.”
“What is autism again?”
So I explained the three indicators that doctors look for when they are diagnosing someone with autism. He listened and then was quiet. “Do you think you know anyone with Autism, Andrew?” “no.” He seemed sort of nervous. We had gotten this far in the conversation before…and sensing his hesitancy, I’ve always stopped here. But yesterday I didn’t. I said “I really like kids with autism. I love the way they think about things.” And that was enough. He wanted to hear the characteristics again and as I explained each one he’d say “I do that!” And then, “Wait! I think I’m autistic!” “Yes! You are!” I said smiling. “And so is Isaac!” Which was very exciting news for Andrew because that meant that one day Isaac could join him on Autcraft! :)
And that was it. There was a way that the conversation wasn’t that big of a deal. He was fine and it didn’t come up for the rest of the day. But there was also a way that it was a HUGE deal. It was a HUGE deal to me. I’ve been so worried about how it would go for so long. AND I’ve felt bad that so many other people knew something about him that he didn’t know about himself. As he got older, that discrepancy felt less fair to me. And so that little 8 minute conversation, felt like it was years in the making, and I can’t picture it going better.
One of the things that I really want for these kiddos is to know the things they struggle with without being scared of those things. I want so badly for them to see the ways they need extra support without feeling any shame about it. And I know that the way they feel about themselves will change and shift as they continue to bound through life, but I am really grateful that, at least for now, Andrew knows a lot about himself and concludes that he’s pretty great.
And I’m extremely grateful that Andrew’s first connection of himself with the word “autism” was so positive. And like I said, that might be more about who Andrew is and how he thinks about things…but I’m going to go ahead and take a big slice of the credit anyway. Because it also marks the many ways that I’ve grown and the peace that I’ve found on this bumpy ride.
We’ve come so far, and I’m glad to have these points along the road to remind me.