How do you tell your child he/she has Asperger’s?

Watching “Parenthood” yesterday, where Max overhears his parents telling his uncle he has Asperger’s Syndrome reminded me of our own dilemma of “when and how do we tell our child he has AS”?

We found out our little boy had AS when he was nearing his 6th birthday. He already had a diagnosis of ADHD, so many of his Asperger symptoms were mistaken for ADHD symptoms. He was officially diagnosed at Children’s Hospital at age 6 1/2.

After the initial shock, grieving, suffocating guilt-trips and confusion, I started educating myself and seeking help and resources. It was totally overwhelming and somewhat depressing what I found on the internet. It took me almost a year to get my feet back under me and be able to start doing some productive things to help our family.

But the immediate problem was: how do we explain our son’s challenges? How do we tell our family, tell friends, tell strangers who give the infamous dirty looks in public, but mostly, how do we tell our son? And when is he old enough to understand?

I read a couple of stories of parents who had told their kids at age 4-5 years and they were able to somewhat understand, accept and even rejoice in their uniqueness. This was encouraging, but every child is different in how they perceive and process information, and our son didn’t seem to notice or care that he was different from his peers. We held off for several months looking for a good opportunity to tell him, but he was happy just being his energetic, quirky, loud, in-trouble-a-lot little self.

By 1st grade, we saw many changes. Although he was fairly popular, he often found himself playing alone, being bossed around by peers, even bullied a little, couldn’t focus on academics, wasn’t interested in anything the other kids were, still full of energy, often misunderstood, etc. I was gradually able to see which one of his behaviors and personality traits were Asperger related, ADHD related or just being a boy. Since he was a great reader and loved books, I decided to make a book about him, to help explain to him in a way he could understand.

The first draft I made was a very simple, 8 page booklet with a few pictures and very little text. I just printed it out myself and stapled the pages together. My boy liked it very much and it was the first time he read “I was born with Asperger’s….. This means that some things, like …….. are hard for me to do. But it also makes other things, like ……. very easy for me to do.” I later updated the book, with more photos of him and more informative text and had it professionally printed. He cherishes this book and reads it with a big grin on his face as it describes how wonderfully different he is from other kids.

I also made copies of this book to share with family and teachers. It is a great tool, because my son desperately needs people around him who believe in his great potential.

My son is quickly approaching 9 years old. He knows he is different from his brother and peers, he knows he has talents and struggles that most other kids do not have. He very rarely, but always appropriately reminds us in a conflict that he “can’t because I have Asperger’s”. We have never used this as an excuse for him, so hopefully he will not use it as a crutch, either.

We don’t know why God created our son with Asperger’s and ADHD and all their related struggles, but He works everything for good, so He must have great plans for our beloved son.