Wednesday, March 30, 2011

Telling Leo About his Autism Label

I have gone over in my mind a thousand times what I would say. What came out of my mouth was pretty close to that. It went really well! But first, here's the backstory.

My husband and I made the decision to wait until Leo asked if their was a name for his issues, or if it seemed he needed to know for some reason. I anticipated the topic would come up when he noticed a classmate with Down Syndrome looked like his cousin. Leo could relate to all the therapies and issues his cousin had. His cousin’s issues had a name, did his as well? But, he didn’t ask.

We wanted Leo to be in a good place and to be able to handle any reservations he may have once he learned of the label. He knew all about discrimination, comparing it to racial issues. He also witnessed classmates making fun of children with special needs. “Andrea only wants to play baby games. It’s so annoying!” they said one day. He associated himself with those children, but instinct told him to not share that he once had the same issues too.

In my mind, I wanted him to know by middle or high school. We didn’t anticipate any reservations -- he doesn’t read the media or hear discriminatory remarks using the word autism -- yet. Knowing beforehand and building upon that seemed ideal.

He has always been comfortable with the fact that he grew up as a “Help Needed” child, the term they used in elementary school. He remembers most of his therapists and some of his “special” interests and behaviors, like stimming on wheels and buses.

Like a child that is adopted, we knew this conversation would take place many times over the years, in layers that were age appropriate.

So here is what happened! The kids and I were invited to speak at a Lyme seminar. Leo was very excited about this -- he loves to talk in front of people. I thought about it, and realized that we couldn’t do it because our privacy would be at risk. The seminar was nearby. Not everyone is thrilled with the content of my blogs, which is one of the reasons why I have used an alias. So, I realized I needed to tell him why.

On our way pick up a few things at a convenience store. I park, and we sit and talk in the parking lot in front of the building.

Mom: “So Leo, I decided that we can’t do that Lyme seminar.”

Leo: “Why not?”

Mom: “Well, I realized that there is one thing you don’t know about yourself. Something about when you had all those problems as a little guy.”

Leo:”Okay, what?”

Mom: “Well, all of your problems actually have a name. You had an Autism Spectrum Disorder. It’s a category of behaviors, learning and health problems.” There are many different kinds, and you had the one called Pervasive Developmental Disorder (PDD). It is a mild version.

Leo: “So like how my Lyme is milder and different than Sydney’s?”

Mom: “Right. Your friends like Joey have Autism, and some of your other friends like Nate have the same kind like you, PDD.

Because of all your hard work, you were able to get better and not have it anymore. You are still the same person, just wired differently. Some things remain easier and harder for you. For example, drawing and visual/spacial stuff is challenging for you even though you have tested average for those. Sometimes it takes you a little longer to notice inferences. You have always known that about yourself, right? You remember your Helper at school, all the speech you had, and the Helpers that played with you at our old house?”

Leo: “Yeah, yeah. Of course I remember. But I was really smart, right?”

Mom: “Absolutely, and you still are. Your brain is unique and because of that you have incredible skills, like your memory and how good you are at math. That is why Yale asked you back, so they could learn from you. You are like a rock star to them. That’s what they do, they study these Autism Spectrum Disorders since it’s now an epidemic. Very few kids recover like you have.

Leo:”Wow. So cool!”

Mom: “So, because people discriminate, we only share the name with certain people we can trust.

Leo:”Like Harrison (our neighbor) doesn’t tell everyone about his ADHD and Dyslexia?”

Mom:”Right. For the same reasons. Autism is even harder to understand, so people have a bad stereotype of it in their minds. I’ve studied it over the years, so I have become an expert in a way. I help people on my website, and as you know I am writing a book about what happened with you. People have been inspired by your recovery and have learned from our experience.”

Leo: “So, the book is ONLY about me, and not Sydney? Awesome! So, am I like, famous?”

Mom: “Kind of, I guess. In a way, to a group of moms with kids that have an autism spectrum disorder. Don’t use the book against your sister, okay? She is in the book a little bit. I have learned a lot from her too. We both have.”

Leo:”Look! A cheese special (he points at a sign on the window for a sale).”

Mom:”Cool. So do you have any questions?”

Leo:”Mom, it’s just a word.”