Autism

“Social advocacy” for your child when “social” is not in your skills set

by Emily Willingham

Published March 17, 2009 @ 02:00PM PT

It started in kindergarten. A scrunchy face misinterpreted as a scowl. The tongue—it always emerges under stress or confusion—lolling around, seen as a mean leer. The problems with body space, ending in ill-received bumps and unwelcome grabs. The inept efforts at forming friendships, efforts that included popping off with some bizarre, nonsensical utterance in an attempt to make a human connection, but leaving the recipient confused, bemused, offended.

We didn’t realize that children, his peers, saw our autistic son like this, as a mean, big bully intent in some undefined way on causing them harm. We, the parents, didn’t get it. It’s hard enough for us to figure out the other parents.

And so, on through kindergarten, through first grade, his reputation built, unbeknownst to us. Our dawning awareness came with after-school soccer in May of first grade. One child, much older and savvier, bullying our son in that elusive, socially aware way that an autistic child will never quite understand. Taunting him, mocking him. Yet, this child’s parents saw every encounter with me as a reason to complain about how our son’s behaviors frightened their son. I tried to talk to them, to explain what TH means when he says, “Quing! Quang! Squong!” to a mystified child. I’m always up front about TH’s different abilities, but they seemed to think I was trying to excuse his behavior. What I was really doing was not advocating strongly enough for my son by pointing out to them their own son’s behaviors.

Second grade, in the fall, we learned that the parental grapevine was afire with rumors about our son, the “mentally imbalanced bully,” demands for his removal from school, for a psychiatric evaluation (Hey! Guess what? He’s already had those. He’s autistic. If you ever bothered to talk to me about him, you’d know that). I figure that if TH were more “autistic” looking, some of this might have been avoided. But unless he’s in full flap or vocalizing mode, he’s just one of those awkward, odd kids who generally can “pass.” Maybe we should have made him an explanatory T-shirt to wear.

Meanwhile, all of his teachers agreed fervently that TH doesn’t have a mean bone in his body. They insisted on this even as Mom-of-Frightened-Son started raising hell if TH so much as walked past her child in the cafeteria. She spent one memorable day angrily accosting what appeared to be every adult at the school, essentially trying to get our son locked down in some way. Her son’s bullying tactics were far more subtle than her own, at any rate. But TH remained oblivious, which meant that we did, too. We’re not much better than he is at navigating the byways of the socially manipulative. I had no idea that thanks to those maternal efforts, the parental grapevine was a raging inferno of rumors about our child.

TH blows off negative social interaction as negligible—it just doesn’t mean that much to him, and we have the same tendency. I think that’s one reason we didn’t step up and advocate for him earlier, one reason we let his reputation take a huge hit. It just seemed so irrational to worry about some of that stuff. And because TH didn’t think these things were important, he was experiencing ongoing bullying that we didn’t know about.

We had been clueless for too long. We didn’t know about the merciless bullying TH had been enduring on the bus and on the playground. We didn’t know that other kids mistook his overtures of social expression as intent to harm. Now that we did know, we knew that we had to step up, to advocate much better for our son. Our first move was to counter, officially and in writing, the calumnies that one particular mother was spreading about our boy. We needed to make that stop. We didn’t demand that the school so much keep her son away from TH as we did that the school keep her away from our son.

Our second move was to go straight to the kids. We needed to make a big statement about our son that would change the way his peers across second grade viewed him, a perception that would trickle up to the parents. And we did, with tremendous success. In my next post, I’ll elaborate on the program we presented, called Circle of Friends. If you recognize yourself or your child’s experience in this post, it’s something you’ll want to consider doing. It’s a small change for your child, but it can mean a big societal change in the aggregate.