It's known at the "summer slide" in education circles. It's what happens during summer break when students forget what they learned during the school year. But for students on the autism spectrum, the summer slide can also mean losing hard-won social skills, and that can make it especially difficult once school starts again.
The students at FOCUS Center for Autism are all on the autism spectrum. But you can't hear it listening to them play, and you can't see it just looking at them. It's what's known as an invisible disability, though some might argue whether it's a disability at all.
Like Jacob White, 15. I asked him if he remembers when he first realized he was different.
"I wouldn't exactly say I noticed I was really different," he said, "but I have a few things that I'm not exactly fond of -- something that most other kids wouldn't be bothered by."
What's he not fond of? Loud noise. But not just any loud noise, but those made by people.
"With a human being, if I know they have a choice to do it or not, and they continue, it almost literally drives me nuts," he said.
I told him I could relate. Loud people also get on my nerves. But for some students on the spectrum, noises are especially difficult to deal with. The hum of fluorescent lights, objects clattering together -- if it's bad enough and nothing is done about it, it can send them into what's called an autistic meltdown. These meltdowns often compound the social isolation many of these students feel.
The number of children identified with having autism spectrum disorder has risen dramatically over the years, though in many places, like high-poverty areas, under-identification still remains a concern. The Centers for Disease Control now estimates that one in 68 children has autism, though boys are nearly five times as likely to be identified as girls.
High anxiety, difficulty expressing emotion, and trouble socializing are key indicators that someone could be on the spectrum.
Summer programs, like the one at FOCUS, seek to give students with autism a chance to build and hone their social skills, said Donna Swanson, the program director and its co-founder.
"I call it a social skills immersion program," Swanson said. "We do things with kids that people didn't think you could do with kids with autism."
The students go on field trips, visit the Connecticut Science Center in Hartford, attend plays, go canoeing, and they also play games with each other.
When I visited, they played a game called Should I? Or Shouldn't I? The premise is simple -- each student takes a turn reading one of the cards, which are filled with various social situations. Then, in small groups, the students have to figure out the best response, which is assigned a number. Like, if the behavior is against the rules -- that would be a five. Or would it annoy someone -- that would be a four. A one if it would it make them feel good, etc.
"The scenario is, you have not washed your hair for ten days," Jacob White said.
The students gathered in groups to discuss. They all agreed that it's gross and would make others feel weird. Eli Totzke, 13, shared an unexpected insight.
"Some people don't have access to a shower," he said. "But if you do, it's definitely, you know -- if you explain, 'I'm sorry I don't have access to a shower right now,' that's a different story. But if you do, it's, it's... socially awkward."
The game is part of their daily session on mindfulness. That's a therapeutic technique that helps, really anyone, avoid being overwhelmed by their environment. Playing games in small teams can help. Director Donna Swanson said a big part of social growth during the summer involves team-building and sharing experiences together.
"Really what gets accomplished in the summer is amazing to their own personal growth and their problem solving," Swanson said. "Their ability to navigate different situations and transitions."
Transitions can be especially tricky. Students with autism generally like structure. They like to know what to expect. Surprises are usually painful, and could even lead to meltdown. So moving, or transitioning, from one activity to the next, takes some planning.
At FOCUS, there's a process for everything, especially transitions. Swanson laughed when she talked about how whenever they go somewhere, they pack into these white vans with tinted windows.
"We have a rule, there's a quiet minute when you get in the van," she said. "There's a quiet minute before you get out of the van. They would pull up and it would look like the FBI was arriving. The tinted windows, and one van after another, no activity. After a minute, it was like the clown mobiles. Everything opened up, the kids, the coolers, the this, the that, the enthusiasm."
Many of these students also go to FOCUS during the school year. A lot of them were bullied at other schools, Swanson said, so her staff first tries to get the students comfortable with themselves, then with each other. As they develop coping mechanisms and learn to understand their own behavior, most of them try to go back to a traditional school setting.
"They let you know what they can tolerate and what they can't tolerate," Swanson said. "They do want to be with other kids at some point, when they're ready."
It is a spectrum disorder -- some kids are nonverbal, some are high functioning. Some are brilliant, some have intellectual disabilities. But, just like every kid, they really just want to have fun and be accepted.
