One Square Mile Johnston: Finding A Safe Space At The Autism Project

Feb 1, 2017

Maria DeSimone and Sharon Schubert have children with Autism Spectrum Disorder. They value their time together at The Autism Project.
Credit Kristin Gourlay / RIPR

Right across from the Johnston Town Hall is the home of the Autism Project, a nonprofit that helps kids with autism spectrum disorder learn to cope with their condition. 

As part of our "One Square Mile" series about Johnston, we spend some time at The Autism Project to learn how it’s become a second home for the autism community.

Joann Quinn is executive director of The Autism Project. We’re in her colorful office, crammed with pictures and art work.

“The Autism Project, we’re actually entering our 20th year. And we grew out of the concerns of educators in public schools that children in their schools who were on the spectrum were not getting the education they should be because they didn’t know how to educate them," says Quinn.

Joann Quinn heads The Autism Project in Johnston, RI.
Credit Kristin Gourlay / RIPR

Today the Autism Project supports hundreds of families and provides training for schools. That’s because kids with Autism Spectrum Disorder need a range of services, depending on the severity of their disability.

“Autism is a social communication disorder that’s brain based," Quinn says. "Their neurology is different. And it impacts each person differently. Some people have really high sensory needs. Some people don’t have language. Some people have cognitive differences. But it really impacts the way they see the world and take the information in and process it.”

So having a safe space – where outside stimuli aren’t coming at you all the time, where people understand if you need to rock back and forth or lie down with a blanket over your head - is paramount. That’s why kids and parents come to support groups and play groups here all week long.

“It’s a no judge zone. You can come here on your darkest day and tell us the worst thing you think has happened to your family and we will support you. We will not shake our head and tell you ‘oh you should have or could have.’ Because we’ve all been there.”

This Saturday morning families and their teenagers are gathering for the popular “move and groove” class. It’s all about giving kids the chance to exercise and interact with each other. Parents and their autistic children are filling up the waiting room.

Bill Parillo arrives with his 19 years old son. His son is blind, he’s wearing sunglasses, rocking back and forth in his chair. And he’s clearly happy to be here – he’s giggling. Parillo says having a place close to home means a lot. “There’s not really a lot, as far as activities go, there’s not really a lot in Rhode Island. Most of the things we attend for that nature are out in Massachusetts. “

Parent Maria DeSimone shows up next with her child. “It’s very much I think social for the kids but also for the adults I would say.”

It’s in this waiting room where parents get to blow off steam while their kids are in class. They get to exchange war stories. Talk about the weather. Bond. It’s just as important, says executive director Joann Quinn, as the center’s formal programs.

When they come in here for one of our parent to parent or our starting point trainings, and they’re outside in the parking lot underneath the light for another half an hour talking to three other mom or dads, going through the same thing, that’s the first time for many of them that they realize they’re not 100 percent alone. So that’s one of the most powerful things we do.”

The move and groove class is about to start, so the kids file into a little classroom. The lights are off. And there are big exercise balls for them to bounce on. Some kids are arm in arm with their own social worker. Others bounce quietly on their balls, waiting for the music to start.

Back in the waiting room, parent Sharon Schubert has just arrived. She says she rescheduled a hair appointment to make sure she could be here because she loves seeing the other parents.

“And I think when they started this move and groove and it was appropriate for our kids, and we all just as parents really get along great and we talk about everything. Which is really nice. The fact that they still wear pull ups, wet the bed. I mean it’s just nice to come and talk to people that totally understand what you’re going through and what you deal with at home. And the sense of humor as well.”

Plus she knows her son Joey needs this community too.

“Joey gets as sick of me as I do of him, to be honest. He likes the break as well. He likes the adults that work with him. He likes the kids that are there. He likes the treats.”

Schubert says it’s hard work parenting a child with autism. People with what this group call “typical” kids often have no idea what it takes.

“It’s just a typical kid times 10. You need the support if you have a typical kid to get out and not feel isolated. But it’s times 10 as important when you have a kid with a disability.

The Autism Project believes there are about 10,000 people living with autism spectrum disorder in Rhode Island.