NEWSBYEMILY WILLINGHAM

In my previous post, I described how our laxity in observation and advocacy for our son led to a grade-wide perception of him as a bully, while at the same time, he was on the receiving end of bullying from some of his classmates during every unstructured period of his day. We decided it was time to act and implemented a program called Circle of Friends (COF).

The underlying principle of COF is that knowledge is power. Our child’s different ability is as much a part of him as his blond hair, and the more other people know and understand about autism, the better they will understand our son. The kids learn more about the specific child and that child’s expression of a different ability, and then they can choose whether or not they’d like to become part of that child’s circle of friends. They’re not mentors, they’re not babysitters, they’re friends who do what friends do: support, advise, guide, interact, play.

There are three basic parts to COF, adjustable to specific needs. First is the presentation to peers, preferably with you, the school counselor, and maybe a special ed teacher. Second is a letter that goes home to parents, explaining COF and asking for signed permission for their child to participate. And third is follow-up, varying from school-led activities with children who signed up to out-of-school activities organized by the child’s parent. Follow-up thank-you notes/updates are also part of this phase.

Part I
First, we presented a slide show about TH to the children (TH had reviewed it all and given the OK). The counselor explained what autism is. I brought a PowerPoint slide set with pictures of TH doing the things he loves most: studying nature close up, collecting bugs, playing on the beach, doing art, playing chess. I also included pictures of his hugging his baby brother and helping his brothers.

With this approach, kids make a connection. They learn about commonalities in that part of the presentation, and they learn about differences. For example, TH’s special ed teacher talked with them about some of TH’s behaviors that they might find confusing and we talked through some of them.

Part II
The permission slip contained a carefully worded explanation of what we were doing and why. I included a clinical definition of Asperger’s and gave some examples of TH’s social behaviors that might come across the wrong way. We defined COF and its goals, and I think it also would be useful to include a longer outline of the program on the back of the letter. At the bottom was a simple permission slip for the parents to fill in and sign and our contact information if they had questions.

Part III
This is the implementation and “thank-you” phase. Depending on the involvement of your school, you may be able to arrange small-group activities at lunch or on the playground with kids who have signed up to be Friends. This part is, however, largely the parent’s responsibility to follow up on and arrange. There are any number of COF activities that you can arrange with parents and their children who have signed onto the program. Finally, we also had the COF plan read into the minutes of our ARD.

How did it turn out?
Overall, the children were attentive, curious, and pretty thoughtful. About 40 permission slips came back, agreeably signed. The letter apparently sparked numerous dinner-table conversations about differences and understanding. One of the parents who had complained, belligerently, about our son told a neighbor that he now “felt small” knowing the reality of the situation. We heard feedback like, “This helps us understand so much better,” and “I’m hearing so many good things about the letter,” and “I’m so glad to know more about this.”

TH’s teacher reported that the entire tenor of the classroom changed since we presented, almost immediately. Children didn’t react strongly or negatively to some of the strange things TH does or says. They seemed to understand him better. TH himself seemed more at ease: less flapping, more focus, less humming and vocalizing. In her last report card summary, she described him as being “well liked” by his peers, saying that his “social issues” had “disappeared,” which she attributed to COF. [Is acceptance of differences classifiable as “cure”? ;-) ]

If you’d like more information about COF or documents that explain the program and provide prototypes for the letter and other information, please get in touch with me or see my blog for more. This is a profound way to achieve important change at the individual and community level, and I’d like to see it spread faster than a rumor on a hot parental grapevine.

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.