Squag: A Social Media Space for ASD Tweens & Teens

Sara Winter


Squag is a new social media space with a difference, developed for tweens and younger teens with autism.  The user (the tween, called a Squagger) begins using Squag by interacting with his or her own “Squagspace'” — designed to look like a room — with content (photos, videos, and messages added by parents.  Eventually, when a particular Squagger is is ready (according to parents) one Squagger is matched with another, and they can interact.  The interaction are always only between two Squaggers.   The platform is now in beta user testing, which means the ability to connect pairs of  Squaggers is not yet enabled.

I saw a Squag announcement, and was intrigued by the concept, so arranged an interview with Sara Winter, Squag’s founder–LD

What inspired you to create SquagTM?

The idea came to me two years ago when I was on the playground with my nephew at recess. He has ASD and I’ve been his aide both at home and at school since his diagnosis in 2001.

There had been a skirmish, and he was very upset. When the other kids went inside, I encouraged him to type a note to his parents on my blackberry to tell them what he was feeling. I was completely astounded by the level of sophistication he was showing by in 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 a result?

I figured there should be software for kids like “Sam” – something that wasn’t therapy and wasn’t gaming, but somewhere in between; something that took his communication style and sensory processing into consideration and made it safe for him to communicate not only with parents and peers, but with himself!

I spoke to my family and in a leap of faith (a big one) we decided to build it ourselves.

What input did you have? Specifically, from kids on the spectrum and adults on the spectrum?  How about from professionals and other parents?

In the very beginning, we based it on four kids we had known since they were first diagnosed (one of them being my nephew) that represented different ends of the spectrum. Each step of the way, we engaged more people from both the child/parent and professional community for their feedback.

Once we had a prototype, we were able to test it with 65 families and really get a sense of what was working and what was not.  We were able to present it to the Autism Research Unit at Sick Kids Hospital (http://www.sickkids.ca/) here in Toronto and get their feedback too.

One of the best things we ever did was to use Aspiritech (www.aspiritech.org)  – a beta testing company out of Chicago that employs adults on the spectrum. Their input was invaluable to us – not only were they fantastic in terms of functionality but it opened up great conversations for us conceptually as well.

The purpose of this open beta test (and the reason we have not enabled it for peer-to-peer capabilities yet) is to engage everyone in our community, adults, kids, parents, caregivers, psychologists and educators to test the SquagpadTM – the foundation of the experience –  and give us the feedback we need to release the next version.

Tell me a little bit about the beta-testing process.

It’s ongoing and has been amazing. Having the SquagpadsTM in the homes of our users is incredible. Hearing from our parent testers that their kids are journaling about their experiences, looking in the mirror and building ideas about themselves and sharing them with their parents energizes us to keep going.

Our community is very clear on what still needs to be done and we have received overwhelming support to do whatever it takes to get it done properly.

What about the Squag experience for kids who aren’t yet independently reading and writing?

(I made an error in writing up this response. What follows is correct.–LD) We have video capabilities in the Squagpads now but do not have audio augmentation.  We absolutely will be adding all kinds of things to support different users

Is SquagTM available for mobile devices like the iPad?

You can access all of your parent information on an iPad but the air application itself has to be downloaded to desktop or laptop.

Reconfiguring for an iPad is definitely something we will do, and won’t be too far in the future. We wanted to start with this version and have it available to everyone first, and build out a mobile app as soon as we get a feel for how both our parent and child users are experiencing the SquagpadTM.

What did you learn?

I was not at all a tech person before I started this and created the parent dashboard in the way that would be accessible to me. I’ve been totally humbled and educated on what it takes to build technology.

It was also a crazy experience to go out into the special needs social media community and find families who have been through what my sister has been through in the ten years since my nephew’s diagnosis. Being so focused on my nephew’s needs for so long, it was incredible to find other kids that had the same strengths, stims, struggles and behaviors as he did. It was very empowering for our family. I’ve been really inspired by what other people have built In our community – whether it be blogs, apps, products or services that bring awareness and support this spectacular group of young people.

The other part of this is as we’ve been building SquagTM, my oldest son has his own issues. His diagnosis is different but many of his challenges cross over, and it occurred to us that there are many group of kids (and parents) that would enjoy and benefit from SquagTM. That’s why we’re committed to offering the SquagpadTM with labels or without  – whatever parents choose will be expressed in their child’s pad.

I feel like we’re part of a movement that’s been created by the generation of kids that has been empowered by the connectivity of social media – none of us will ever be the same after knowing and loving these spectacular kids. And a lot of incredible voices , innovation and creativity have come out of it.

What  about online  safety issues?

It’s the biggest issue.

Let me be really clear that the SquagpadTM itself is a totally private space for parent and child. Parents hold all the username and password information and communicate with their kids through a space that has been curated by us and finessed by the parents to reflect their child’s personal interests. Some families will only ever want to use the SquagpadTM, and not enable peer-to-peer capabilities so we will be adding new features constantly to keep it dynamic and interesting. These features will always be geared toward self-reflection and creative expression to help encode the child’s confidence.

Once we enable the SquagpadsTM for the peer-to-peer capabilities we will be working very closely with ASD organizations to lock down membership and ensure that everyone is safe. If members want a peer-to-peer enabled SquagpadTM they will be taken through a thorough application process to be considered. We will also require their credit card and there will be a small monthly fee. Our staff will be moderating all of the activities and as well, parents will have transcripts from every squag session – they will be able to see who their child is squagging with and when, for how long, and exactly what is said from the reporting section of the parent dashboard. No images of the child will be shared, nor will any of the communication between parent and child. ‘Squagging’ is always one on one, and only the text content that the child has added, the stock images and videos that they have selected, are available to spark conversation.

That’s why the testing period is imperative. We will not move to the next step until we are 100% sure we can do it safely and securely. The organizations and schools we partner with are critical to ensuring that.

What else would you like our readers to know?

I think these kids are almost always underestimated; and most definitely underserviced. Everyone wants to be connected to the people they care about. That is the nugget of social media I love the most. But the constant drive for acquisition and sharing on other networks represents a missed opportunity to me – why bother “friending” someone if you haven’t taken the time to figure out who you are first? There are a lot of great things about gaming and social networking, but that’s not what we’re out to do with SquagTM. We are committed to offering a space where kids can be mindful with technology and encode some real confidence to take back into their daily lives.