Citizen science platform with Autistica

Building a participatory, citizen-science platform investigating sensory processing and autism

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Ethics Developmental psychology Research methods Databases Human computer interface Applications (Machine learning)

Introduction

Numerous studies have confirmed that autistic people experience sensory processing differences, and that this can significantly impact their lives. One aspect which is not yet fully understood is how these differences affect the ways in which autistic people navigate different environments. Using participatory methods, this project will build a citizen scientist platform which will collect rich information about people's experiences navigating the world. The data can be used to improve public and private spaces for autistic people, educate the public, and help create strategies to cope with, and remove, barriers autistic people may face.

Explaining the science

Autism 

Autism is a spectrum of developmental conditions. Around 1/100 people in the UK are autistic. More information is available at Autistica's website.

Citizen science

Citizen Science is when non-professional scientists contribute directly to scientific research. This could be, for instance, by contributing data or performing tasks. 

Participatory science

Participatory science means that members of the affected community are directly involved in research as more than research subjects: they are active contributors on a number of levels, for instance by setting direction, having influence over critical decisions, or designing the procedures and modes of the study itself. 

Open source 

Open source refers to software which is released under an Open Source License, meaning that anyone is free to reuse, modify, share, and build upon the code. The code is often built collaboratively and openly with a range of volunteers. 

Project aims

Understanding sensory processing differences in autism was one of the autistic community's top ten research priorities, identified in the 2016 James Lind Alliance priority-setting partnership led by Autistica.

To help investigate this issue, an online, citizen science platform will be built to gather information at scale on experiences of sensory processing and navigating different environments. This will increase understanding of sensory processing in a way which improves the daily lives of autistic people. The project will be participatory from the ground up. All aspects of the project will be designed and developed in collaboration with members of the autistic community.

The platform will be developed under a free and open source license and all software, and design and process documents, will be made open. Integral to the project will be building and providing citizen scientists with a fine-grained consent model that supports individual contributor’s personal preferences on how their data is used on the platform. The project aims to empower everyone in supporting autistic people and their families in living long, healthy, happy lives.

Ultimately, the platform, the fine-grained consent model, and the participatory practice developed, will be able to be adapted for subsequent research. The aspiration is to be at the forefront of change in creating the groundwork for more thoroughly participatory and empowering science.

Applications

This work has a number of directly impactful applications. The data collected can be used to better modify public and private spaces, such as workplaces, schools, hospitals, and public transport, so that they are more accessible (and enjoyable) for autistic people and their families. It can also be used to educate non-autistic people about the experiences of autistic people, so that they can modify their own behaviour, respond to autistic people with greater understanding, and are more able to offer support. Additionally, it can be used to create personalised recommendations and strategies for coping with different environments based on connecting people with others who have had similar experiences. 

The platform created will be easy to modify to answer other research questions. The fine-grained consent model can also be adapted for other research projects, allowing for a more individually nuanced and empowering way of collecting data for scientific research. The project will result in a framework for doing science in a way which is open and participatory, and the experiences and learning from carrying it out will be used to help guide fellow and future practitioners. 

Recent updates

June 2024

Writing for platform completed by AutSPACEs community member and writer Alex Morgan. 

May 2024

“How to co-create content moderation policies: the case of the AutSPACEs project” by Georgia Aitkenhead, Susanna Fantoni, James Scott et al published in Data & Policy. It is available to read online. 

Bastian Greshake Tzovras spoke on “Wissenschaft von und mit Bürgern” for the German Code for Thought podcast. Listen online. 

April 2024

Mini-workshop on co-creation run for the SSI Collaborations Workshop 2024 facilitated by Georgia Aitkenhead, Bastian Gresham Tzovaras and Kirstie Whitaker. Slides available on Zenodo.

Chapter “Ethical Practices for Citizen Science” published in Open Science meets Citizen Science, ed. Bastian Greshake Tzovaras. Authors are Georgia Aitkenhead, Sophia Batchelor and Kirstie Whitaker. It is available to read online. 

March 2024

Panel discussion on “Nothing About Us Without Us” delivered for AI Uk on the Future Stage. Hosted by Georgia Aitkenhead in conversation with Helena Hollis and Margaret Colling from The People’s Panel on AI, and James Scott from AutSPACEs. Slides are available on Zenodo.

February 2024

Blog on “User testing a citizen science platform” by Bastian Greshake Tzovaras and Georgia Aitkenhead published on the SSI website. Read online. 

Second wave of user testing the AutSPACEs platform completed. Date available on the AutSPACEs GitHub repository. 

November 2023

Talk delivered on AutSPACEs for the NHS England research team.

October 2023

Poster presentation delivered by Bastian Gresham Tzovaras for the first international Citizen Science 4 Health Conference.

September 2023

“Accessible design”, presentation by Georgia Aitkenhead, Sophia Batchelor and Bastian Greshake Tzovaras, delivered for the PPIE community. Slides available on Zenodo. 

July 2023

“How to co-create moderation policies: the case of the AutSPACEs project”, presentation delivered by Georgia Aitkenhead, Bastian Greshake Tzovaras, Susanna Fantoni and James Scott for the joint AIM (AI for Multiple Long-Term Condition) RSF (Research Support Facility) & NIHR MLTC PPIE Community of Practice. Slides on Zenodo. 

“AutSPACEs: a co-created and open source citizen science project” delivered by Bastian Gresham Tzovaras for the 24th Bioinformatics Open Source Conference. Slides on Zenodo.

May 2023

Poster presentation on AutSPACEs delivered by Georgia Aitkenhead for C*Sci 2023. Poster available on Zenodo. 

January 2023

"AutSPACEs: co-creating a citizen science platform", delivered by Bastian Greshake Tzovaras, Georga Aitkenhead, Otis Smith and Helen Duncan for an international seminar on "Public Space, Play and Neurodiversity". Slides on Zenodo.

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Researchers and collaborators

Contact info

You can email us about the project and visit our repository.

If you are interested in joining our AutSPACEs community, please email Georgia at [email protected] or join one of our open meet-up sessions which are held every first Thursday of the month, online over Zoom. 

Email [email protected] to be added to our mailing list or invite list for meet-ups or go to our Wiki for information about previous and upcoming meet-ups.

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