Our son was 7 years old when he got the autism spectrum diagnosis. He had already been scheduled to move from the special education class to the “Autistic Support” class because, thankfully, school districts don’t need a medical diagnosis to take action.
We had been through the ringer — no, Sean had been through the wringer three times in five years. Behavioral pediatricians, oral tests, physical tests, genetic tests, psychological tests, neurological tests and repeat the entire process again and again. All done at some of the best children’s hospitals on the east coast. But five years in, we finally had a diagnosis, Sean was on the spectrum. Now we just had to tell him.
Sean knew he was different. He knew he had meltdowns (we called them episodes). He knew he wasn’t the same as the rest of the kids at school. He just didn’t know why. This led to frustration on his part, which led to meltdowns and periods of melancholy.
To be honest, we knew. His Mom and I had our suspicions he was autistic based on what we had observed in other family members. I believe secretly we wanted another explanation.
But Sean was Sean, autism and all. The autism is what made him, him. The spinning beads or string around his finger, the meltdowns, the mood swings, thinking things were his fault, the sarcasm, the jokes, the belly laughs, the hugs, the insisting on cuddling with Mom — it was all part of who Sean is. Our boy, our perfect little boy.
So all that was left to do was to tell him, explain it to him. Just as much for us as for him. We sat him down, turned off the TV, asked him to stop spinning the beads that were in his hand, and we started the conversation.
“Hey buddy,” I said, “You know how you think you are different, and how Mommy and I tell you it’s OK to be different?”
“And you know when you have episodes and get upset because you don’t know why you have them?”
“Well, you remember going to all the doctors and doing all the tests and playing all the games with the doctors?”
“Yes Dad, I remember all of that. Can we turn the TV on?”
“No and can you stop spinning for another minute?”
“And look at me please.” He did. “Well, we got it all figured out.”
“Yes, we do. Sean, buddy, you have autism.”
“Autism is a different way of thinking, a different way learning things. Autism is the reason you need to spin your beads and the reason you have episodes. It’s because, sometimes, your head thinks of things differently than me or Mom.”
“You don’t think the wrong way, honey,” Mom said, “just differently. It’s not a bad thing, it just means you need to work a little harder at some things. But you are very smart, Sean, very, very smart and you are doing so well.”
“Like school?” He asked.
“Yes like school.” Mom said.
At this point he went from sitting on the coach to laying on it, he was quiet for about a minute. We both wanted to ask him if he understood, but knew it would take a few minutes for him to grasp what we were saying to him.
His eyes welled up, and he said “Can you take it out of me?” he asked me.
“What?” I was a bit dumbfound.
“Can you take it out of me, Dad? The autism, please take it out of me.”
That was a gut punch. I’m his father, he’s 7, and he wants me to perform something impossible. I took a deep, very deep breath. “No buddy, I can’t take it out of you, and even if I could, I wouldn’t.”
“It’s part of what makes you so special,” Mom interjected, “it’s part of what makes you, you, like your blue eyes or your smile. It’s part of who you are and we don’t want to change that — ever.”
The conversation went on from there. Assuring him he would be fine and now that he knows why he does the things he does, maybe it won’t be so frustrating or scary for him.
You know what? It’s not anymore.
Since then, Sean has come to own his autism. We have only had two meltdowns in that time and he has a much better grasp on his emotions and social skills. Part of getting him to this point was a book we found recommended on The Mighty, “The Survival Guide for Kids on the Autism Spectrum (and their parents)” by E. Reeve & E. Verdick. Sean calls it “My autism book.” But the biggest part is Sean, and his ability to understand what we talk to him about and what we read in his “autism book.” But mostly, it is his desire to “try my best.”
Like every other parent, we tell him we are proud of his accomplishments, we tell him we love him and we discipline him “autistically” when necessary. He is doing well in school and Cub Scouts — he’s our perfect little boy.
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Thinkstock image by BrianAJackson