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Bastian Greshake Tzovaras edited this page Jan 27, 2023 · 1 revision

Resources

This folder contains uploads, links, and recommendations from community members. Whether you want to get guidance, explore further, dig deeper, or find a foothold, this is a great place to look.

Contents

About this project (videos and presentations)

Friends, supporters, and partners

  • The Alan Turing Institute: The Alan Turing Institute is funded by Autistica to deliver the Autistica/Turing citizen science project and the platform AutSPACEs. It is the UK's national institute for data science and AI innovation.
  • Autistica: Autistica is a UK autism research charity which supports autistic people by funding research, shaping policy and working with autistic people to understand their needs. Autistica upports and funds the Autistica/Turing citizen science project.
  • Open Humans: Opeen Humans is an international not-for-profit organisation, dedicated to empowering individuals and communities around their personal data, to explore and share for the purposes of education, health, and research. They are providing the backend infrastructure and data management system for AutSPACEs.
  • The Turing Way: The Turing Way is an open source, community-driven guide to reproducible, ethical, inclusive and collaborative data science. You can become part of their community, and contribute to the guide, by visiting their GitHub repository
  • Open Life Sciences: The Open Life Science (OLS) program helps individuals and stakeholders in research to become Open Science ambassadors. The Autistica/Turing citizen science project was part the second cohort.

Created by community members

Susanna Fantoni's website and blog

Autism

Autism: academic articles and publications

Autism and participatory science

  • Cusack, J., & Thompson, A. (2018). Aut2Engage—Dr James Cusack and Abigail Thompson. https://www.youtube.com/watch?v=14tRLI4IrGQ&feature=youtu.be
  • Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943–953. https://doi.org/10.1177/1362361318786721
  • Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts. Frontiers in Psychology, 8. https://doi.org/10.3389/fpsyg.2017.00438
  • Nicolaidis, C, Raymaker, D., & McDonald, K. (2011). Collaboration strategies in non-traditional community-based participatory research partnerships: Lessons from an academic – community partnership with autistic self-advocates. Progress in Community Health Partnerships, 5(2), 143.
  • Nicolaidis, Christina, Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism: The International Journal of Research and Practice, 23(8), 2007–2019. https://doi.org/10.1177/1362361319830523
  • Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627
  • Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research: Official Journal of the International Society for Autism Research, 4(4), 271–282. https://doi.org/10.1002/aur.201 Pellicano, L. (2016). towards a new science of autism: Building a participatory framework.
  • Wright, C. A., Wright, S. D., Diener, M. L., & Eaton, J. (2014). Autism spectrum disorder and the applied collaborative approach: A review of community based participatory research and participatory action research. Journal of Autism, 1(1), 1. https://doi.org/2054-992X-1-1

Autism: recommended books

Happé, F., & Fletcher-Watson, S. (2019). Autism: A New Introduction to Psychological Theory and Current Debate. This is a fantastic introduction into autism for anyone wanting to join the project who is unfaamiliar with current autism research and points of discussion. It is highly value-aligned with this project. Liane Holliday Willey, Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life, https://www.goodreads.com/book/show/11187137-safety-skills-for-asperger-women

Autism: recommended blogs and websites

Autism: films and videos

Autism: other resources

Open research

  • Budin-Ljøsne, I., Teare, H. J. A., Kaye, J., Beck, S., Bentzen, H. B., Caenazzo, L., Collett, C., D’Abramo, F., Felzmann, H., Finlay, T., Javaid, M. K., Jones, E., Katić, V., Simpson, A., & Mascalzoni, D. (2017). Dynamic Consent: A potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics, 18(1), 4. https://doi.org/10.1186/s12910-016-0162-9: this is an academic paper which looks at the conditions which give people genuine agency over data used for medical research. It's great for laying out clearly a raange of reaasons to adopt dynamic consent (in which paarticipants of reseaarch studies are able to easily change their consent.)
  • Ram, K. (2013). Git can facilitate greater reproducibility and increased transparency in science. Source Code for Biology and Medicine, 8(1), 7. https://doi.org/10.1186/1751-0473-8-7

Citizen science

  • Arnstein, S. R. (2007). A Ladder Of Citizen Participation. Journal of the American Institute of Planners, 35(4), 216–224. https://doi.org/10.1080/01944366908977225
  • Greshake Tzovaras, B., Angrist, M., Arvai, K., Dulaney, M., Estrada-Galiñanes, V., Gunderson, B., Head, T., Lewis, D., Nov, O., Shaer, O., Tzovara, A., Bobe, J., & Price Ball, M. (2019). Open Humans: A platform for participant-centered research and personal data exploration. GigaScience, 8(6). https://doi.org/10.1093/gigascience/giz076
  • Hecker, S., Hacklay, M., Bowser, A., Makuch, Z., Vogel, J., & Bonn, A. (2018). Citizen Science: Innovation in Open Science, Soceity and Policy. UCL Press.

Community Management

Technical guides

GitHub

  • Github Tutorial This provides a good guide for learning the basics of GitHub.

UX design

Python

Django

Accessibility

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