Participatory citizen science to improve autistic peoples lives

Participatory citizen science to improve autistic people's lives Kirstie Whitaker Pronouns: she/her @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Thank you to the project team – Georgia Aitkenhead – Bastian Greshake Tzvoras – Andrew Harding – Craig Hall – Otis Smith – Sarah Markham – Tom Augur – James Cusack – James Scott – Bethan Davies – All our focus group participants @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Picture credit: Chris Gorgolewski @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

https: //the-turing-way. netlify. com/ open_research/06/openscholarship. html @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

#Understand. More https: //youtu. be/r. P 1 S 8 ip 4 VVE @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

@kirstie_j https: //www. autistica. org. uk/our-research/your-research-priorities https: //doi. org/10. 5281/zenodo. 3661468 http: //www. jla. nihr. ac. uk/about-the-james-lind-alliance/about-psps. htm

@kirstie_j https: //www. autistica. org. uk/our-research/your-research-priorities https: //doi. org/10. 5281/zenodo. 3661468 http: //www. jla. nihr. ac. uk/about-the-james-lind-alliance/about-psps. htm

@kirstie_j https: //www. autistica. org. uk/our-research/your-research-priorities https: //doi. org/10. 5281/zenodo. 3661468 http: //www. jla. nihr. ac. uk/about-the-james-lind-alliance/about-psps. htm

Community needs – #5: Which environments lead to the best outcomes for autistic people? – 90% of autistic people have sensory processing differences – Translate lab research to the real world @kirstie_j https: //www. autistica. org. uk/our-research/your-research-priorities https: //doi. org/10. 5281/zenodo. 3661468 http: //www. jla. nihr. ac. uk/about-the-james-lind-alliance/about-psps. htm

Community needs – 27% of UK research funding spent on community priorities – Increasing funding for biological mechanisms – Decreasing funding for screening and service provision @kirstie_j https: //www. autistica. org. uk/our-research/your-research-priorities https: //doi. org/10. 5281/zenodo. 3661468 https: //www. autistica. org. uk/our-research/uk-research-review

Can citizen science tell us about how autistic people navigate the world around them? @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

https: //autistica-demo-deployment. herokuapp. com/overview https: //github. com/alan-turing-institute/autistica-filemanagement-demo @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

https: //autistica-demo-deployment. herokuapp. com/overview https: //github. com/alan-turing-institute/autistica-filemanagement-demo @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Social model of disability – What about the world is disabling? – – Environmental barriers Attitudinal barriers Communication barriers Organisational barriers – A neurotypical world built by neurotypical people http: //humanrightseducationaustralia. com/ lesson-4 -2 -the-social-model-of-disability-inclusive-london @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

https: //youtu. be/9 s 3 NZa. Lhcc 4 @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Our goals: community, education, action Share autistic people’s stories and adaptive techniques with others who have similar experiences https: //alan-turing-institute. github. io/Autistica. Citizen. Science https: //github. com/alan-turing-institute/Autistica. Citizen. Science @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Our goals: community, education, action Share autistic people’s stories and adaptive techniques with others who have similar experiences Educate neurotypical people to better support their autistic friends, family and colleagues https: //alan-turing-institute. github. io/Autistica. Citizen. Science https: //github. com/alan-turing-institute/Autistica. Citizen. Science @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Our goals: community, education, action Share autistic people’s stories and adaptive techniques with others who have similar experiences Educate neurotypical people to better support their autistic friends, family and colleagues https: //alan-turing-institute. github. io/Autistica. Citizen. Science https: //github. com/alan-turing-institute/Autistica. Citizen. Science Advise organisations on how they can design and adapt spaces to improve autistic people’s lives @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Our goals: community, education, action Share autistic people’s stories and adaptive techniques with others who have similar experiences Educate neurotypical people to better support their autistic friends, family and colleagues You can help here! https: //alan-turing-institute. github. io/Autistica. Citizen. Science https: //github. com/alan-turing-institute/Autistica. Citizen. Science Advise organisations on how they can design and adapt spaces to improve autistic people’s lives @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Impact – Improve the lives of autistic people immediately and in the long term – Translate findings to be actionable for employers, policy makers, architects and beyond @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Navigating built environments – Visit to the GP, hospital – Libraries – Schools – Open plan offices (hot desking!) “When anxiety is really bad, having to go to the GP is like having to climb Everest. Then I get there and ask if they’ve got a quiet room. Sometimes it’s yes, sometimes it’s yes but it’s not actually a quiet room, and sometimes it’s just no. ” – Public transport https: //www. autistica. org. uk/downloads/files/ Autistica-Action-Briefing-Sensory-Needs-The-Built-Environment. pdf @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Participatory Design – Reduce distance between the researcher and the researched – Partner with autistic people as co-collaborators and designers – Explain processes to allow everyone to participate @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Transparency – Communicate aims, priorities and ongoing progress as the project evolves – Active engagement – Regular newsletters – Subscribe: https: //tinyletter. com/ Autistica. Turing. Citizen. Science @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Data protection & informed consent – FAIR: findable, accessible, interoperable & reusable – …but not open – Highest standards of data protection – Fine-grained consent, actively maintained @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

https: //www. openhumans. org @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Open source – Source code, process documentation & design research publicly available for reuse under a permissive open licence – Developer community including data scientists, industry experts and autistic collaborators @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Autistic people & their families Open source developers @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Diversity & Inclusion – Welcome all perspectives – Remove barriers to participation – Nurture a respectful and accepting community – Enforceable code of conduct with appropriate safeguarding pathways @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

How can we improve the built environment to help autistic people live longer, happier, healthier lives? https: //www. autistica. org. uk/about-us @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Community experiences “I would like to learn how to improve fire safety advice and technology such as smoke alarms, to better protect people with autism from fire and its effects … Can buildings have better signage or layout to improve chances of safe escape from a fire? Where a significant fire risk exists, would a sprinkler or water mist system be appropriate or inappropriate in some cases, dependent upon the autistic individual who lives in the property? ” https: //github. com/alan-turing-institute/Autistica. Citizen. Science/ blob/master/community-recommendations/Google. Form. Responses. csv @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Community experiences “I am concerned about the difficulties travelling in / navigating confined spaces like tube trains and lifts … On 17 th September l attended a council meeting in a new mixed use building that has been passed as finished yet the lift l exited from the second floor to ground level had ply board facias next to the metal control panel. There was lots of striped sticky tape holding the boards in place and l felt very uncomfortable … Where was the panic button. Nowhere in plain sight. I’m travelling in a FIRE BOX. I was shaking inside the whole journey down. I complained at the reception desk as l signed out … I asked them to log the complaint and emailed my council too. I attended a meeting on 23 rd. The lift is finished. I feel my feelings were validated. ” https: //github. com/alan-turing-institute/Autistica. Citizen. Science/ blob/master/community-recommendations/Google. Form. Responses. csv @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Community experiences “I was invited to attend the recently completed Westminster City Hall for a Equality and Diversity day in my capacity as a Human book. Despite using Google images / maps prior to travel l found their lobby was identical to two other buildings on the same road with no outside or visible signage to indicate it was the town hall. Upon entry I found two receptionists who were both occupied … Eventually [the receptionist] told me to sit on chairs across the lobby with a vast amount of people pushing past me at 9 am. . . I politely refused to do that announcing my Autism, my anxiety and that l knew where l needed to be on 19 th floor … The Council received my feedback as part of the event. I am assured they will use digital check ins as part of better inclusion. ” https: //github. com/alan-turing-institute/Autistica. Citizen. Science/ blob/master/community-recommendations/Google. Form. Responses. csv @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Community experiences “When l was travelling on a South Western train … l found the fact that the whole train had no markings to define which was first class and which one was economy very disorienting. I almost didn’t board. I assumed l was not allowed to get on it. I had to ask a fellow passenger if my ticket was ok to use on it. On the return journey … l narrowly avoided tripping over a very tiny metal lip at the step down by the automatic exit / entry doors. . Why on earth isn’t it flush like on other train lines. I found myself breathing quite shakily for the next five minutes or so. It influenced me to do a different route home on the tube that increased my journey time, making me more tired. I’ve learned from this experience to be more vigilant about exit points. ” https: //github. com/alan-turing-institute/Autistica. Citizen. Science/ blob/master/community-recommendations/Google. Form. Responses. csv @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Please join us – Anonymously, publicly share suggestions via the "always open" google form: https: //bit. ly/Autistica. Turing. Cit. Sci. Form – Say hello in our gitter channel: https: //gitter. im/alan-turinginstitute/Autistica. Citizen. Science – Subscribe to our mailing list for monthly project updates: https: //tinyletter. com/Autistica. Turing. Citizen. Science – Join the discussion in our issues and pull requests on Git. Hub: https: //github. com/alan-turing-institute/ Autistica. Citizen. Science https: //alan-turing-institute. github. io/Autistica. Citizen. Science @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468

Thank you to the project team and you for listening – Georgia Aitkenhead – Bastian Greshake Tzvoras – Andrew Harding – Craig Hall – Otis Smith – Tom Augur – Sarah Markham – James Scott – James Cusack – All our focus group participants – Bethan Davies Unsplash photos by Adrien Ledoux, Anna Dziubinska, Anne Nygard, Daniil Silantev, Kaleidico, Perry Grone & Thomas Q @kirstie_j https: //doi. org/10. 5281/zenodo. 3661468