They say necessity is the mother of invention. For the staff at San Diego-based Stages Learning Materials, it was more the mother of let’s-get-moving-on-this.
Four years ago, the company, which creates and sells autism teaching and learning tools, had asked a group of Ed School interns to design a free, online discussion forum for parents, therapists, and teachers who support the education of students on the autism spectrum. Unfortunately, the busy company, which has included 29 Ed School students and alumni since it started in 1997, had to temporarily shelve the project. As project manager Leslie Stebbins, Ed.M.’10 says, “We put it in our back pocket and knew at some point we would get it up and running.”
Then COVID turned the world upside down. As schools closed and families were asked to stay home, Stages started getting more and more questions, especially about how to support home learning for children with autism. They realized that it was time to resurrect the online forum.
“Fortunately, with advance planning already in place, we were able to act quickly,” says founder and CEO Angela Nelson, Ed.M.’13.
So, too, did the autism community. That first week in March, when the project launched, the Autism Learning Line (A.L.L.) registered 800 members. Today there are 920 members and so much activity that subgroups were quickly added to accommodate specific needs or interests. Surprisingly, says Stebbins, there had been few similar models in existence — dedicated online discussion and support groups specific to autism that include everyone (and that don’t push ads or products on members).
“The existing groups are primarily geared for either parents only or therapists only,” she says. “We wanted to create a space where we could bring parents, therapists, teachers, and families together and have them talk to each other.” This is important, she says, because this community has unique challenges and day-to-day concerns.
“Communities help fill a need for social support and acceptance for parents; it allows them to be vulnerable with each other and know that it’s okay to be exhausted or not have all the answers,” Stebbins says. “We’ve noticed that often parents just want to vent or share milestones with a community that genuinely understands that having their nonverbal child speak a few words is incredible progress!”
Recently, a subgroup called Recursos en Español was added for members searching for resources in Spanish, and for Spanish speakers to communicate and learn from one another. Patty Martinez, Ed.M.’19, A.L.L.’s coordinator, says this tailoring to member needs is one way the project is already making a huge — and necessary — impact.
“Helping to shape the A.L.L. community so it is accessible to Spanish-speaking families is a cause near and dear to my heart,” she says. “Growing up as a first-generation student, I saw my parents struggle to find resources in Spanish, and I often found myself having to translate things from English to Spanish for them — anything from school applications to basic forms — from a very young age. Parents of children with autism do not have that option, and it is incredibly rewarding to know that Spanish-speaking families can turn to our Recursos en Español group to ask for help.”
Martinez says that with the COVID crisis, “parents have faced even more challenges and are less likely to be able to easily tap their typical network of family and friends.” Popular COVID-related topics on the A.L.L. site include how to handle disrupted schedules and transitions. A recent post talked about the challenges of getting a child with autism to wear a mask. “People shared strategies about how to deal with being approached by an angry stranger unable to understand why a child was unable to tolerate wearing a mask.”
More recently, Stages has found growing interest from the international community, especially after Ed School graduates Runxi Chen, Ed.M.’16, Sihan Yang, Ed.M.’16, and Myra LalDin, Ed.M.’16, translated some of the most popular articles posted on ARC, a blog that Stages writes, and helped spread the word about A.L.L. in countries like China and Pakistan.
“Different countries are at different places with autism,” says Stebbins. Providing needed resources and a supportive community across the world “is a service for our community. Angela runs a business, but this is our way to give back.”