Telling your kid – and the world – that he has ASD

It was another day like any other in the Israeli spring. The sun was shining, and there was not a cloud in the sky. The only hint that it was spring and not summer was that the air wasn’t boiling up from the pavement. And on this day, Ray walked into his 3rd grade class, ready to give his 30-odd classmates a short presentation: He was going to tell them all about Asperger’s.

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It was only a few weeks before that we had told him about his diagnosis, so perhaps we should first talk about that. As I previously mentioned, we had decided to not tell him about any diagnosis when he was younger, since the different specialists we had visited had said that he was borderline, and could possibly manage in a standard setting with some help. But then, one day, he came home and said that he felt different from the rest of the class.

“Different how?” Michelle and I inquired.

He mentioned a few things. The other kids liked playing soccer, while he was not good at it and didn’t care much for it and preferred reading books instead. Also, the other kids always want to be on his team when it comes to trivia-like games in class. And finally, the other kids seem to have fun spending time together, while for him it’s hard and uncomfortable.

And indeed, we knew that he was right. We had watched for more than two years as he adjusted to life in Israel (where the spoken language is Hebrew) and to grade school, and could see the signs ourselves. He had no real close friends, had difficulty with social interactions, and would overreact in class when unexpected things happened. Regardless of what label you wanted to put on it, he did have his own unique challenges at school compared to the “general population”.

So, when he noticed it himself, we knew that we had to equip him for dealing better with the world – it would only grow more complex as he grew older. And that meant that it was time to finally tell Ray about his diagnosis as Asperger’s, and more generally ASD (Autism Spectrum Disorder).

We sat down and prepared for sharing this with him. Aside for reviewing what we should say and how to explain what ASD is, we also went online and purchased a few books on ASD that are meant for kids to read, to explain to them about themselves at an age-appropriate level. Ray learned to read English at age 4, and was a voracious reader (though he probably didn’t know the word “voracious” back then…). We figured it would give him a means to explore the topic after we gave him the basic info.

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We sat him down in the living room one evening, and said something like this:

“Ray, you said recently that you feel different, and we want to tell you a bit about what it is you are feeling.

“You have what’s called Asperger’s Syndrome. It’s a condition that means that your brain develops a little differently than most people. There are good things, and challenging things, that come with it.

“On the positive side, it is also why you have a great memory, you learn languages and math very easily, and in general are very, very smart. Not everyone with ASD has this, but it does come with the territory sometimes, as it does for you.

“It also means, that some things are more challenging for you, like social stuff at school. This is why you feel different – because this is harder for you than others.

“However, now that we know this, we can help you deal with it. Here,” we said, handing him the books we bought him. He took them eagerly.

“But we want you to know – you’re not any worse than the other kids. You’re just different in the things that you are strong at and things you struggle with. And there are great people who have Asperger’s – people who have won Olympic Medals or American Idol and stuff like that. So, really, your life will be as full as you make it.”

He asked a few questions. I don’t recall what they were, but, happily, he seemed confused, not sad, with this news.

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The days that followed posed two challenges for us. First, he kept on trying to “blame” Asperger’s for anything he did differently or wrong. “I didn’t do my homework . Maybe it’s because of my ASD.” “I don’t like cleaning up my room because of my ASD”. When these things came up, we made certain to dissuade him from the idea.

Sure, we wanted to show compassion and love to him, going through this processing period when he figures out a part of his identity. But true compassion here was not to give him an excuse he can use whenever something is hard or he does not feel like doing it. It was important for us that he understands not only what ASD does impact, but also what it does not.

In fact, even in cases when I thought that perhaps ASD might be a part of the “emotional equation”, I would do my best to avoid accepting it. “This might be harder for you to grasp instinctively, that’s true,” I would tell him, “but you can do it, and you should <behave better> next time”.

The second thing was that in the first weeks after telling him we told him to keep the “news” secret. “Don’t tell other people, like your friends,” we said, fearing that they would laugh at him, “they might not understand”. He nodded but we got the sense that he was confused. We had just spent lots of time telling him that he has nothing to be embarrassed about, and then we indicate that he should not share it.

We realized quickly, though, that this was a lost cause. A few times Ray came home and told us how he had mentioned Asperger’s to this friend or that one, sharing why he behaved a certain way. We knew then that the battle for privacy was lost – eventually the news would spread. It was best that we controlled the information, we thought.

So we contacted the school counselor and shared the diagnosis with her. After involving his homeroom teacher we agreed that telling the class in an orderly way was the best approach – get ahead of the story, as they say in the news biz.

“How about Ray do it?” Michelle suggested bravely.

But she had it right, I felt. It would give him the exact opposite message – that there was nothing to fear or be ashamed of. So Ray studied for a week about ASD from his books and prepared a speech to give to the class. When the day finally came, he was truly ready to explain to them what his condition meant, and how they could help him.

He did it that spring morning, in the presence of the teacher, school counselor and Michelle. I had offered to come too, but after consulting with the school we decided that too many grownups in the room might affect how comfortable the kids felt to ask questions and be themselves. Ray stood before them and gave his short speech. (You can find the full text here if you’re interested).

“Asperger’s means my brain develops differently, which has lots of advantages,” he told them, “but it also means some things are harder for me.” He went on, working through the main details he had processed. When he finished, the teacher opened up the floor for questions, and a bunch of fingers shot into the air. After a few “technical” questions that any eight-year-old might ask (“does it hurt?” “is it contagious?”), one kid shared his feelings about what he heard.

“Ray, why didn’t you tell us this in first grade? I never understood why you were not playing with us in the yard during break. I thought you were being snobbish or something… Now that I understand, I will for sure play with you more.”

“Yeah,” another one piped up, “please, if you need anything just tell me. I’ll help you get into the soccer games in recess.”

Michelle could not report on much more that happened after that. It was hard to see through the tears of joy and relief.

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Speaking of tears – the next day Ray came home very emotional, practically crying. Michelle rushed to him outside the school, her maternal instincts telling her that he was probably bullied, punished for being so open and forthright about his condition.

“What happened??” She asked, worried.

Ray swallowed a sniffle. “All day long people kept on coming to me and asking me to play with them,” he said, “it was nice, but really, I just wanted some time by myself!”

Take the good with the bad, I guess 🙂

Looking at it from my vantage point, almost seven years later, I can tell you this tutorial for the class was very helpful. True, Ray never really did develop any close relationships with his classmates, but they were kind to him for the next 3 years – never was there any bullying him as a result of this revelation.

More importantly, we delivered our firstborn son a critical life experience, one that taught him how to tell his story, and to know that on the receiving end of it people can meet him half way and give him support, not ridicule.