Inclusive Co-Design: how to bridge understanding with Neurodivergent people

Last updated on October 2, 2022

I want to share an activity I created as a first step in a co-design process with a group of young people with additional support needs in order to build rapport, trust, a better understanding of their school experience and shared language.

A bit of background

The transitioning experience from childhood into adulthood can be traumatic for many young people with additional support needs. Their voices and dreams are unheard, their needs and struggles not sufficiently supported, and in some cases, young people may not be invited to the very meetings where their futures are decided.

While I was working at my company, Passio, I had the pleasure to work with the Divergent influencers, a group of young people aged 16-25 who were picked by ARC Scotland to represent the voices of people like them across the country. My task was to work together with this group to co-produce a tool that supports and educates young people across Scotland while also preparing them to be able to confidently advocate for their future.

In order to deliver this, it was crucial to create an inclusive design process to enable us to be on the same page of understanding the experiences of young people at school.

Design Challenges

If you work in the design and accessibility field, you may have heard about the double empathy problem. The basic idea of the double empathy problem is that neurotypical people can understand and communicate with each other well and neurodivergent groups can also communicate within their own groups perfectly fine. The problem arises when neurotypical and neurodivergent people have to communicate with each other because there is often a gap in their perspectives which makes exchanging ideas difficult.

Knowing this, our first challenge was to design a workshop activity that bridge our worlds to build a vocabulary to establish a mutual understanding between everyone involved. This way, we could work together while combining our expertise in order to co-design a successful solution.

Coming from a cognitive science perspective, I initially contemplated using emojis in feeling charts to help us understand the affect young person’s journey through school. These kinds of activities should be familiar, intuitive and accessible.

However, I knew from experience neurodivergent groups reported these activities were not inclusive to them. Interpretations of emojis in feeling charts are subjective and created based on neurotypical standards. Neurodivergent people’s experiences do not always won’t fit into the same boxes.

Here is an example to illustrate this point:

A traditional emoji - it depicts a round red face with a frown and furrowed brows — An emoji that could represent many different affective states

Is this Emoji anger? Sad? Constipated? Different people can interpret this information in many different ways.

If we look at typical feeling charts, they do not encapsulate other affective states such as ‘sensory overloads‘, which is a highly relevant feeling many Neurodivergent people experience. Thus, if a person in your user research group cannot find an emoji or the language to represent how they feel, they are forced to find an approximation which may not be accurate to how they feel at all. In design research and co-creation, it means losing valuable insight, data and connection to peoples true experience.

Finding a new approach

Dr Dinah Murray, a brilliant autism and disability advocate, introduced me to ‘autimojis’. These were emojis created by autistic people to showcase their own emotional affect states. Here are a few examples. Notice how they do not have facial expressions?

An autimoji - it shows a five-cornered abstract shape, coloured grey with the colour seeping out beyond the edges. There is an area within the shape that is coloured white with black lines coming out of it as if signifying impact. Surrounding the shape are more black lines pointing outwards. All the lines have different shapes and sizes. — Upset but not obvious

An autimoji - it displays a near-round shape with wavy edges. It is coloured a dark grey colour and it has thick black borders. There are wavy lines representing vibrations on the inside and outside of the shape. These lines all have different lengths. — Upset by sensory disturbance (usually caused by lack of meaning)

Inclusive Design process

We built a bespoke user research method upon the idea that typical emotional scales would not fully encapsulate neurodivergent experiences. Thus we created a new activity. We asked young people to create three emojis to represent their experiences at school using automojis as creative prompts.

The results

The Divergent Influencers were highly engaged and very creative. Here, a young person drew an emoji of Shrek. He explained he felt like an Ogre at school – people misunderstood him when he was a really soft and kind person.

The image depicts three emojis created by a young person. The first one is a yellow smiling face. The second one is a colourful wheel. The last drawing is of Shrek. — 3 emojis drawn by a young person to depict his experience at school

Below you can see the Conflicting emoji with a person feeling happy, confused, happy, confused, all at once!

Emojis drawn by a young person to show they felt both happy and confused, angry and joyful at the same time. — The top 2 emojis show the respondent having conflicting feelings at school

Here a person described feeling fragmented. I could never have imagined feeling like this without this imagery!

The emojis show the feeling of a person feeling fractured and fragmented. All three emojis show faces. The first face is split in half top to bottom - the left side is smiling, but the right side looks despaired and the side's surface looks fractured. The second face is smiling, but the eyes express an uncanny feeling. The third face shows a person smiling, but the eyes, nose, and mouth are all made out of question marks. — 3 emojis drawn by a young person describing the feeling of being fragmented

“I never knew how my child felt because she was unable to articulate her experience. If I had something like this, it would have made such a difference to her life.”
— A Divergent Influencer’s parent

Conclusions

Involving young people in an inclusive design process where they created their own emojis instead of having them select them from pre-defined feeling charts proved to be an effective approach to building bridges and overcoming the barriers posed by the double empathy problem.

I was able to see a new perspective on how school was different for many young neurodivergent people and I gained insights into things I would have never otherwise imagined. Not only that, but this approach provided a platform for some interesting, deeper group discussions and I got a chance to gain an understanding of young people’s colourful experiences at school.

The feedback from the Divergent Influencers was also that they loved the the activity and were impressed it was so highly inclusive and accessible, allowed them to express their opinions in ways that are not possible through language but easier through drawing.

As people working in user experience, it is our job to capture participants’ true feelings towards products or ideas, and this is not possible without accurately mapping how our users might really be feeling.

So next time you’re tasked with assessing feedback on something, have a think about whether the tools you’re about to use are really suited to work with the people in your research group. You might find an artistic approach or even the use of sound might be more effective than language as a means of expression.