Participatory design
with neurodiverse people

A small toolbox

Neurodiversity

the key significance of the ‘autistic spectrum’ lies in its call for and anticipation of a politics of neurological diversity, or neurodiversity. The ‘neurologically different’ represent a new addition to the familiar political categories of class/gender/race

Autism ADHD Dyslexia Dyspraxia

Dyscalculia Dysgraphia Irlen Syndrome

Hyperlexia Tourette's Syndrome OCD

Synesthesia

Participatory

Participatory design differs from traditional, human-centred design approaches in that the user is not simply a source of information or evaluator of the final product, but an active contributor of design ideas and a decision-maker in the process

Situated

Autism & Social media

Green slides contain
research recommendations

Autistic adults

Saying “person with autism” suggests that the autism can be separated from the person. But this is not the case. (...) I am autistic because autism is an essential feature of me as a person. (...) I am autistic because I accept and value myself the way I am.

Autistic sociality is
interest-based sociality

intro photos

Schedule
regular breaks

Steps

1. Get some data
2. Organise it
3. Create evidence cards
4. Come up with tasks
5. Break people into groups
6. Get them to review the evidence

Ask about special
accommodations

Steps

1. Get some data
2. Organise it
3. Create evidence cards
4. Come up with tasks
5. Break people into groups
6. Get them to review the evidence

Be specific &
provide structure

Steps

1. Get some data
2. Organise it
3. Create evidence cards
4. Come up with tasks
5. Break people into groups
6. Get them to review the evidence

Your task

How are the social media experiences and practices described in the data different to your own?

Just do it!

What we learnt

• Interest-led social media interactions
• Impact of confrontational and extreme content
• Clarifying tone and intention (explicitation)
• Emojis and GIFs are not working
• Sensory overload and overwhelm
• Ecomising energy and effort

"I always have to go through everything like 10 times. And am I saying everything correctly? Does it make sense? Will people understand? Is my message clear?”

"trying to work out how you’re meant to react. Are your emotions appropriate? How do you say that? How do you have to fluff it out to make it palatable to other people? Just exhausting, totally exhausting"

Questionable concepts

Provocative design proposals purposefully assembled to motivate creative critique.

Un-useless

Questionable concepts may be

• Opaque
• Ambiguous
• Provocative
• Impractical
• Ridiculous
• Address a real problem

"the Small-Talkifier (...) mean[s] that I’m not the person that I am when I communicate. And there’s something about one [having] to look normal which I find very disturbing. It’s like going back to the 1920s and 30s where disabilities were hidden. You know: you make small talk so that (...) nobody knows that you are different from anyone else. I find that very problematic."

Participants' task

Think of a story about your social media use and choose the questionable concept that best addresses the story circumstances.

Participants' task

Think of an annecdote about your social media use and choose the questionable concept that best addresses the story circumstances.

Invite feedback &
react to it

Your task

Create your very own questionable concept addressing autistic people's social media use.

Just do it!

What we learnt

Why do design cards work?

• Cards act as physical carriers of ideas.
• Cards trigger combinatorial creativity.
• Cards enable collaboration.

Lucero et al., 2016

Participants' task

Using the design cards, compose a feature for a new social media platform designed by autistic people.

Your task

Using the design cards, compose a social media feature that addresses the needs and preferences of autistic people.

Cater for the
initial freeze

Can't think of anything? Don't worry!

1. Pile all the orange cards together
2. Pile all the blue cards together
3. Close your eyes
4. Pick 2 blue cards at random
5. Pick 4 orange cards at random
6. Can you make a feature with the random cards?

Just do it!

Audio preview

Audio preview

"if you hear it and then it sounds fine then you know, you know you're all good and you can post confidently without worrying that you're not communicating what you want to communicate."

Activate stillness: calm & still viewing

Activate stillness: calm & still viewing

"sometimes (...) you want your scrolling to just be pictures and text. No sound, and no moving images, because when you put headphones in it can be really startling. (...) So remove any moving images (...) to have a calmer scrolling, where things are still, and where you're just looking at images: still images and text."

Mental health protector

Mental health protector

"a way of kind of like changing the algorithms so that the algorithm could see if you were looking at lots of negative stuff. And instead of giving you more negative stuff, because you're looking at lots of negative stuff, maybe giving you some bunny rabbits (...) To kind of counteract."

Emoji alternatives: use pretty pictures instead

Emoji alternatives: use pretty pictures instead

"maybe use something else visual instead to mean happy or sad or whatever. (...) maybe like the sun I would see as being like happy and cheerful. Unlike maybe dark clouds I'd see as being sad. I do better ... in a more artistic way. I could see the picture rather than seeing faces. I just don't get people's faces at all."

Don't be a dick: win prizes

Don't be a dick: win prizes

"Let's say you were doing loads of posts, (...) that you were getting good reactions, good replies, that other people were liking the things that you were saying and (...) getting positive feedback, then you would earn a special banner (...) you would be a super-post model netizen, and that would give you good social standing in the social media setting, and this would also encourage people to be nicer (...) I think it would be a fun way to encourage good behaviour."

Silent reflection

• Was this useful?
• Did you learn anything?
• Did you learn anything practical that you will be able to use in your design work?
• What could have been better?
• Is participatory design feasible in your professional context?
• If not, what would need to change to make it feasible?

We argue that the emotional and social lives of autistic individuals are rich and nuanced and provide insights that should inform the design of (...) computing systems.

Thank you! :)

belenbarrospena@gmail.com

Image credits

• Music notes by CILIP Photos - CC BY-NC 2.0
• Laces wall by Warren R.M. Stuart - CC BY-NC-ND 2.0