Hello! My Name Is Aspergers

I went searching for a label. I thought that if I could get my son a diagnosis, we could beat it. Unfortunately, naming it didn’t help.

Aspergers has no cure. Instead we are faced with years and years of therapeutic treatment and medication to help integrate him into the world.

My 9-year-old son is extremely bright and perceptive, but he has trouble reading social cues and playing with friends his own age. If someone keeps checking their watch during a conversation, I know they are looking to go. E would keep talking, not catching the nonverbal hint. Simple things that come so easily to us must be taught to E like a math equation: person + frown = unhappy.

In order to keep E social, we have been advised by his therapist to enroll him in kid-friendly activities. We try to assist him with introductions or to help him approach potential new friends, but the kids seem to sense that something is off with E and he’s usually left to play alone, a few feet from a group of boys his age.

But we will keep on trying.

I signed E and his brother C up for Vacation Bible School with some of their friends from our neighborhood. When I filled out the forms, they had a section that read, “Is there anything else we should know?” I listed that E had ADHD and mild Aspergers, but I would be reachable by phone if any problems arose.

My friend was kind enough to pick up the VBS t-shirts for the boys. Attached to them were their name tags. C’s looked normal. E’s had a huge red dot in the upper right corner and beneath his name, written in red were the words, “ADHD, mild Aspergers”.

I stood in my kitchen and cried.

I know why they did it—itt was to alert the staff, much like they would alert them to a peanut allergy. I’m sure it was done with no malice or ill intent, just a heaping dose of good old-fashioned ignorance. But this was not a peanut allergy we were talking about, this was a disability. The church had literally slapped a label on my son for every man, woman, and child to see.

This is how he would be perceived, this would be the first thing they would see—a big red warning dot. He wouldn’t even get the chance to try to fit in. They already had him pegged as “different”.

I’m not ashamed that my son has aspergers, but we don’t go shouting it from the mountain tops. It’s on a need to know basis: If E is going to a friend’s house to play I make sure the parents know what his issues are before they invite him over. I don’t believe in surprising people. I know better than to send my kid into a situation with little more than crossed fingers and a prayer.

But not everyone needs to know.

We decided the boys could skip VBS this year. E and C were not upset about staying home. They were ready for a few nights in. Meanwhile I placed a call to the church office to let the children’s ministry director know the boys would not be attending. Frankly, I was disappointed I had to call and explain why I thought labeling children with their disabilities was a bad idea.