As I look back on J's past year, one thing that stands out to me is how minimal and inadequate his official autism-related therapies were. Our regional autism center no longer provides any therapy at all, limiting its services to evaluations (and even for these there's quite a long waiting list). So all of J's official therapies have happened at school. Here, OT has been minimal, and speech therapy is conducted by an itinerant generalist untrained in autism-specific language deficits. I asked for more; nothing happened; I have yet to sign our 9-month-old IEP. I could have spent more time fighting; instead I spent the time I had working with J myself.
A few months ago it looked like a new opportunity had opened up: the new Kinney Center for Autism Education and Support at nearby St. Joseph's University was offering a social skills group for adolescents with autism. We called up, there was an opening, we faxed over evaluations and went through an accelerated intake. They couldn't wait to meet J. But then they did. "He doesn't comply with directions," the psychologist told me after he interviewed J with my husband, "and so he doesn't meet the requirements of our social group. We need kids who will follow directions." He promised to let us know if some other program opened up that might be appropriate for J.
So my ears pricked up the other morning when I heard the following words on WHYY's Morning Edition:
The long hot days of summer can pose challenges for families of special needs children. Parents have to find activities or camps where their child feels safe, welcome, and continues to learn. A new camp at Saint Joseph's University is trying a unique approach. It's especially designed to accommodate children with autism and pairs them with their typical peers.Gee, they didn't tell us about this program, I thinks to myself, as I continue listening:
Executive director Michelle Rowe says having a mixed group of kids means opportunities for learning. "What that does it it allows the kids with autism to learn from their typically developing peers. In translation, that means that children with autism can benefit from learning what kinds of things are expected socially at different ages."Sounds great, I says to myself. A great opportunity, as well, for typical kids to learn about autism and about how to interact with autistic peers. But then I hear more:
"The kids can be in the pool and also be interacting with each other – we take them for five hours a day, we expose them to a lot of fun, but also, they can't help but learn in the process."
As excited campers chatter about their favorite activities, it is nearly impossible to determine which children have Autism, and which don't:Nearly impossible to tell which ones have autism?? Only a tiny disability?? Tell that to a parent of an autistic child. Or take a look at J, so capable, yet so mischievous that he would never be admitted to this camp. Of course, that's precisely what's going on.
[Sounds of kids' voices.] "I like it all!! We go swimming every day, we go to the play ground most of the days." "I like talking with my friends, I like swimming, and I like snack time." "Playing basketball!"
This is the first year for the camp, and the kids with autism are in the majority, but Rowe hopes to have more of a 50 – 50 mix in the future. She says the concept is also beneficial for typical kids, who learn to feel comfortable around people with disabilities. 7 year-old Ian sums it up:
Ian: "Kids with autism just have a tiny disability, not like a big difference, we're all the same in a couple of ways."
Indeed, besides the fact that the Kinney people didn't tell us about Camp Kinney at the time they evaluated J, there are an number of clues here suggesting that they handpicked the autistic campers to be minimally disabled--at least in ways that would inconvenience the staff and disturb their non-autistic peers. Consider, for example, how easy it was for one of the college undergraduate counselors to diffuse a child's temper tantrum:
St. Joseph's Psychology major Amber Leyton says learning about behaviors and explosive temper tantrums associated with Autism in a classroom is one thing – dealing with them first hand is another. But Leyton had no problems diffusing a situation when a young camper had a meltdown because he couldn't spend time with a counselor named Drew:What this program seems to be striving for, as much in its admissions policies as in its hoped-for outcomes, are individuals like John Dorfman:
Leyton: "At first, it was just waiting for him to level out a little bit, and it was explaining to him, over and over the situation: if you calm down, you can eat your lunch, you can go see Drew, over and over again, the schedule, what was going to happen, and what was expected of him."
These kinds of situations [as in Drew's tantrum] are familiar to counselor John Dorfman from first-hand experience – he has autism. He says he wants to inspire the campers with his own story:So long as potential providers resist providing intensive therapy and opportunities for peer interactions to the many, many individuals with more severe or challenging forms of autism, everyone but the families of such children can remain in happy denial, congratulating themselves on how openly they welcome autistic kids into their worlds and how open-mindedly they appreciate what a tiny disability autism really is.
"Anything is possible! When I was in 9th grade, everyone was skeptical that I was even going to make it to college, and here I am, going into my senior year helping the other kids, it's really a great thing."
I emerge from these thoughts in time to hear the program's closing remark:
Michelle Rowe says they had to turn away applicants this year, but hope to expand the program next summer.Isn't it pretty to think so?