Inclusion: A Two-Way Street?

We talk a great deal about the importance---the necessity---of inclusion for students on the autism spectrum and, really, individuals of all ages on the spectrum, and not only in schools but in the community as a whole. Making inclusion work takes everyone's efforts----and not everyone in a community is willing, or able (yet), to make it work. Two cases highlight some of the difficulties:

The April 7th Buffalo News recounts the "school furor" surrounding a teenager on the autism spectrum who received national attention last year when his case was written about in the New York Times. But now the parents of other students at the school, claiming that "their children are put at risk because school administrators refuse to protect them from the autistic teenager," have formed a group and expressed their concerns at school board meeting.

“We’re in the middle of a tough situation as a district and as a community,” School Superintendent Diane Munro said. “Student safety is No. 1. We just have a difference, apparently, about what constitutes safety.”

The difference has shattered the calm in the rural school district, which is awaiting a federal court ruling on a challenge to the restraints placed on the autistic student when he was in sixth grade.

The student, now about 6 feet tall, is in his second year in high school and rides the bus to the high school, which has an enrollment of about 450. Some classmates have said they are frightened by his loud outbursts and other behavior. And their parents wonder whether the school is treating him lightly in view of the court case.

Parents say their children have reported seeing the student running down the halls, acting inappropriately in a bathroom of the middle school, glaring at a younger student and saying he didn’t like her, and asking who the popular students are, which they view as an attempt to target students.

While the behavior might be unnerving, it is not unusual for a person with autism, said the student’s father. His son sometimes is loud and disruptive, he said, and the teenager also has made lists since he was a child.

.........

“Absolutely, he’s different,” the father said. “Look at him, he’s different. Listen to him talk. That doesn’t mean he shouldn’t be in that setting.”

I feel the father's righteous indignation down to the bone. My son is tall for his age and athletic and, as of last summer, people see him, note his speech and interactions with Jim and me, and just so subtly step around him and us, or move one seat away from Charlie on the subway. And even as I feel that maddening indignation at others, I try to see what the other person is seeing, and how to suggest, there's more here than meets the eye.

Here's another father, of a young "typical" child in a letter in Slate (via the April 6th Washington Post), in which he describes being at a Gymboree sort of place with his two-year-old and with a child on the spectrum who's about six or seven years old.

Like (I suppose) most people, I'm all for mainstreaming as long as it doesn't put my child at risk. However, the play session seemed to be an ongoing litany of the autistic child shoving down smaller children. Every couple of minutes, crying would start and there would a toddler that had just been shoved to the ground by the autistic boy. While the autistic boy's parents stayed close and interceded after the fact, it almost seemed like the other children were unwitting therapy dolls for their trying to get their child used to other children.

The autistic child's parents saw what was going on, as did the moderator of the place. I felt like my choice was confronting the parents and/or the owner (thus making a scene), picking up my child and leaving (thus making a scene), or spending the entire session glued to my kid in case the much older and larger autistic child came charging at my child so I could step in between them. I chose the last option.

Was there a better option that I missed? If not, did I do the right thing? I understand the other parents' plight and the other boy's need for social interaction, but the boy's parents putting their child in a play situation with much smaller children, and letting him tackle [sic] smaller child.

A loaded situation, this. One wonders at the disparity in the ages of the children; perhaps it had been recommended to the parents of the child on the spectrum to pair their child with younger children, due to the communication or other abilities of the child. While open play sessions might seem like a good opportunity for more "casual" social contact, the lack of structure in such sessions can prove incredibly frustrating, and stressful, for a child on the spectrum, who is being asked to do too many things at once: Handle being with many new children and people and their voices and body language, all unfamiliar; try to listen to whatever directions might be given; try to figure out a new space; and a whole lot more. And I'm also feeling the push-and-pull in the hearts of the autistic child's parents, not sure when or how to step in, knowing they should, wishing just to get through it.

Columnist Emily Yoffe's response takes the perspective of the father of the two-year-old:

It's important that you understand the painful situation the parents of the autistic child are in. However, it's to no one's benefit to have a child there who cannot behave within the bounds of safety and respect for others. If you want to continue at this place, you should make an appointment with the manager and explain what happened, and say one child can't be a danger to others no matter what the reason. This setting simply may not appropriate for a child with the disabilities of the one you describe. And if you felt this boy could have hurt your toddler, it wouldn't have been making a scene to quietly leave early.

I suspect that the parents of the child on the spectrum would articulate some different concerns. While I appreciate Yoffe's sympathy, I squirm at her mention of the "painful situation" of the parents. Sure, that must have been a tough time at the Gymboree-type place and there's been plenty of "painful" moments and feelings in these years raising Charlie, it's a good life we have.

One reason why we know that Charlie is, and has to be, included in the community. And we only ask that others can help make his path a little easier, and seek to understand.