In this blogpost series, we have been writing about our participatory design workshops. The purpose of these workshops was reinventing social media in collaboration with autistic adults.
As we explained in the first entry of the series, participatory design argues that all of us have the right to take part in the technology-making process. We should be allowed to have a say on how our technologies work and behave. With that comes the belief that all perspectives and knowledge are valuable, and that technologists have much to learn from the experience of others.
If all voices are valuable, our blogpost series has a little problem. So far you have heard only from the researchers. But the workshops would not have happened without the autistic people who took part in them. Where are their voices, knowledge and experience?
In this blogpost, you will hear from 2 of the workshop participants, who have kindly agreed to share their thoughts and perspectives with all of us.
Social media as a tool to “be part of wider society”
Our first contributor to this blogpost told us that he struggles with social contact, both in person and through social media. He spoke about the stress, anxiety and worry derived from ensuring he does not misread the situations and people he encounters. He also mentioned the sensory overload he sometimes experiences when using social media. Being involved in these workshops gave our contributor the opportunity to find “other volunteers sharing the same concerns”, and he described social media as a tool to “be part of wider society”.
The participant also shared some perspectives on the specific activities and materials we used during workshops 2 and 3. This is what he wrote about our “special features” from workshop 2:
I do really like the translator feature (…) that cuts noise out of communication (…) displayed on social media (…) Noise is a big issue in daily life anyway living with my autism. It keeps you on the brink of meltdown (…) I always battle with translating the mental, sensory and visual noise into understanding. It is a daily challenge.
He told us how, using a “special feature”, he “very much learned something about my own autism” and about “the struggle with translating noise into understanding”.
About the design cards from workshop 3, our contributor wrote:
It was a fun activity arranging the cards into what would work for me with my autism (…), as I struggle with sensory and detail overload using social media. I received the cards through the mail, while using also a virtual whiteboard to arrange the cards, making a contribution for the group.
He explained that the workshop activity “reminded me of how much social media is missing support for people on the spectrum and other health conditions.”
Mindfulness in social media use
A second participant wrote:
Since taking part in these workshops I think I have become much more mindful of my use of social media use. On a daily basis I try my best for it not to be a compulsive binging habit and more of a conscious decision to use or not to use it. (…) I have been reading more novels instead.
During workshop 3, this participant proposed a “Stillness activator” as one of her features: a calmer view mode that would remove all moving images, videos and sounds from the social media feed, leaving only still images and text. She told us this “‘stillness activator’ would be very useful right now in everyday life.” You can see the feature below, as she envisioned it with the design cards.
This participant also agreed with our preliminary conclusions about the outcome of workshop 3, where we highlighted the importance of increasing people’s control over their social media experiences. This includes control over our own content, the content we see in feeds and timelines, the nature of our connections, and even the format and design of the platform interfaces.
We would like to thank all the participants for making these workshops possible, and in particular the two people who contributed their perspectives to this blogpost.
Autistic Adults Online 