Sara Winter has been an aide for children with autism spectrum disorder (ASD) at home and at school, including her own 11-year-old nephew, for over a decade.
A professional dancer, Winter had sustained a knee injury and was recovering from surgery shortly after her nephew was diagnosed. He needed a therapist, and working with him “was mostly a practical decision at first, but what happened was that I got to be with [my nephew] every day and see him navigate his life.”
Winter, who worked as her nephew’s educational assistant while he was a student at the Toronto Heschel School, said another perk to working with him was being able to experience a Jewish education, second-hand.
“I didn’t attend day school… It was a gift to be able to explore Judaism through the kids I was in class with, and a very meaningful experience,” she said.
Winter added that although her efforts were meant to help her nephew, she also benefited from and was inspired by his strength.
“I had no idea how much one little boy would change the way I looked at everything,” said the 38-year-old Winnipeg native.
After a skirmish one day at recess that left her nephew upset, Winter encouraged him to type a note to his parents on her Blackberry to convey his feelings.
“I was completely astounded by the level of sophistication he was showing by expressing himself in this way. I realized in that moment that I had been underestimating him, and if I was underestimating him, who else in his immediate community was, and what opportunities was he missing out on as a result?”
As diverse as the challenges are that can accompany a diagnosis of ASD, Winter said she thinks the biggest challenge is that “these kids are often misunderstood because they communicate differently. Many environments are not conducive to receiving the information they’re putting out.”
It was then that Winter, who has been trained in the use of several therapies, realized there should be software for kids with autism “that isn’t therapy and isn’t gaming, but something in between. Something that took [her nephew’s] communication style and sensory processing into consideration and made it safe for him to communicate not only with parents and peers, but with himself.”
She spoke to her family and “in a leap of faith,” decided to create Squag – an innovative social platform designed specifically for tweens and teens (ages eight to 18) with autism.
The service, which includes a desktop application and a website, offers these children a safe and comfortable online space where they can practise their communication skills and gain self-confidence.
Winter said Squag was designed to build “organic relationships” driven by the kids and supported by their parents. As a social, recreational and creative outlet for these children, Squag gives users a chance to self-reflect before reaching out to their peers.
“We built this platform based on our loved one,” Winter said. Squag was one of her nephew’s first words (his word for “square” back in the early days of his diagnosis and treatment therapy).
“The word reminds us how far he’s come and how far we know he’ll go.”
Once a parent registers and is approved to be part of the Squag community, their first task is to set up their child’s Squagpad, Winter said.
“They curate content and post positive messages for their son or daughter to see when they arrive in their room. The Squagpad is a beautiful private space, with no file sharing of any kind.”
When the users arrive in their Squagpad, they are surrounded by all of their favourite things. They can watch videos, browse photos and write in their journal. They can scroll over their room, see notes from their parents and brainstorm their own ideas to share with their peers, Winter said.
Still in its early stages, Squagpad is now in a testing phase before its wider launch this spring. Through a matching system monitored by parents, users are offered a small sample of Squaggers to connect with. If the other user accepts, their Squagpads pop up together and the original thoughts they’ve created about themselves become available to spark conversation.
“Squagging is always one on one, based on matching criteria set up by the user’s parents. Users have an opportunity to reach out to their peers based on common interests and shared experiences. Squag offers kids on the autism spectrum a safe corner of the web, where they can self-reflect, break down the big idea of friendship and build confidence to take with them where ever they go.”
Winter said one of the reasons she thinks kids with autism are often misunderstood is that they have trouble adjusting emotionally in their home or school environment.
“When kids are regulated, and out of fright/flight mode, they are available to learn and therefore connect. That’s what we’re out to do. To give them a place that’s safe in every way, offering a little bit of extra time to respond and create original ideas.”
Almost 300 families from 12 different countries are now testing Squag, Winter said.
Many of the children have given feedback on how the features work, and she is paying close attention to their input.
“The goal is to give them an opportunity to ask for what they need and want to see down the road. Some of the older teens do not like all the parent involvement, which is something to consider for this specific group of users only.”
She said the children “really want to connect with other Squaggers. They want to be able to talk about their unique interests that aren’t necessarily validated in their daily lives.”
Creating a Squagpad can be done through a free trial offer, but there is a monthly fee of $7.99 to maintain the account. For more information, please go to www.squag.com.
Winter said she plans to donate 10 per cent of Squag’s proceeds to special needs organizations.
As one of the first Certified B corporations in Canada – those that use business to solve social and environmental problems – Squag meets higher standards of social and environmental performance, transparency and accountability, Winter said.