By Dot Lucci, M.Ed. C.A.G.S. and Miriam Zisook, B.F.A.

mgh-aspire In the May issue of Aspire Wire, Dot wrote about STEM (science, technology, engineering and math) at Aspire and our Design Challenge Group that was co-led with Miriam Zisook. The Design Challenge group taught the participants the “user-centered design” engineering process that would be used at the Chatter event which was held on June 9-10, 2017. Pictured on the right is Dot, presenting at the event.

Chatter stands for Collaboration Highlighting Autism Through Technology for Emotion and Relationships and was the cumulating event of the Design Challenge Group. This was the first of this type of group for Aspire and Chatter was the first of this type of event for Northeastern University’s Computational Behavioral Science Lab and the Matty-O Foundation. Leading up to the Chatter event, in our Design Challenge group we introduced design and STEM activities to Autistic teens and young adults. Both groups explored a range of activities from building towers out of marshmallows, to designing a recreation space for Aspire, to designing chairs for characters from The Simpsons. Through these groups we built a community of Autistic individuals invested in design and ready to share their ideas at the Chatter event.

It was exciting to be on the cutting-edge of Autism innovation! When Chatter was conceived it had three goals:

  • to innovate in the field of Autism,
  • to involve all Autism stakeholders, and
  • to center Autistic perspectives in Autism technology and research.

Research and development of technology to support the Autistic community is all too often done without Autistic involvement. Chatter was a collaboration created to address that problem by opening dialogue and building relationships between everyone who is a stakeholder in Autism research–most importantly Autistic individuals.

On the first day of the Chatter event a symposium was held that consisted of three panel discussions. Each panel had a researcher, a clinical or caregiving stakeholder, and an Autistic self-advocate. The panel themes were “Anxiety and Emotional Regulation,” “Interpersonal Relationships and Communications,” and “Advocacy and the Transition to Adulthood.” Dot was a panelist on the Interpersonal Relationships and Communications panel. Each panelist introduced themselves and their work, and moderated by Dania Jekel of AANE, they engaged in a robust discussion connecting their different perspectives. The panels were energizing and inspiring, and for many participants and attendees it was the first time they’d heard from people in another stakeholder group. Attendees listened intently to the panelists and the discussions and then asked their questions, shared their insights, thoughts and feelings and opened the dialogue of understanding even more. During the discussion, a heartfelt moment was when the father of a young autistic child and 2 self-advocates opened up about the ways their communities often feel divided from each other, and connected instead over their shared vision of a neurodiversity movement that could contain all of their experiences. One of the audience members stood up and told the group, “I feel less alone here.”

On day two we broke into teams, with each stakeholder group represented on each team. Utilizing the themes from the previous day, each team came up with a challenge to address, and a technology idea to address it. The team leader helped the team work together and center the perspectives of their Autistic team members. Teams came up with problems to work on and at the end of the day every team presented their idea and some prototypes of how it would work. Some of the ideas included:

  • a system for the workplace that could help people communicate more clearly when they feel upset,
  • a video game modification that would help develop real-world friendship skills,
  • a smart watch to help young adults be more independent from their parents
  • an organizational system that would use time, geo-location and other tools

Our Aspire group members were active participants during the Chatter event and some even came on Friday, with parent permission to miss school! During the Symposium they heard Autistic adults share their experiences and thoughts which helped our adolescents in thinking about the future. On Saturday, their excitement at being a part of this event was palpable. As each participant joined their team we observed them contributing their ideas, asking questions, challenging other’s ideas, drawing the story boards, making visuals, and a presentation at the “final pitch.”

An Aspire participant’s mother said “I’ve never seen my son share his ideas and be so appreciated by someone else.”

From a participant, Self-Advocate stakeholder “One of the reasons the event was so great was that it really did feel collaborative, with the professionals at the table asking questions about ASD but still providing real input. I really appreciated how game they all were. They took it seriously (while still having fun of course) and made me feel really respected, which is something I’ve been struggling with lately...Just a really fantastic way to spend a Saturday!”

Lastly from a clinical stakeholder (speech and language pathologist) and a Team Leader, “Great job of emphasizing the fun and playfulness. It didn’t seem like anyone was stressed out! It’s like you hacked the hackathon!”

We believe the Chatter event had a positive and powerful impact on everyone involved and we are hoping to be able to do it again next year.

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