alan-turing-institute / AutSPACEs

Code respository for AutSPACEs: the Autistica/Turing citizen science platform
MIT License
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Update profile fields following feedback #533

Closed llewelld closed 1 year ago

llewelld commented 1 year ago

Summary

Issue #453 adds a user profile page with various fields that the user can fill out. The details for some of these require feedback from the community.

The topic is scheduled to be discussed during the July Meetup #515, so this task is to update the implementation after the Meetup, and once the fields have been finalised.

For more information, please see the earlier discussion between @gedankenstuecke and @GeorgiaHCA . In particular:

https://journals.sagepub.com/doi/abs/10.1177/1362361315588200 - this article is useful as it gives advice on terminology based on consultation with autistic people. "autistic person" is preferred over "person with autism". "high" and "low" functioning are also often used to differentiate autistic people on their level of care needs. This article is useful and recommends referring "high", "medium" and "low" support needs instead: https://themighty.com/topic/autism-spectrum-disorder/autism-functioning-labels-low-functioning-high-functioning/. Also many people realise or suspect they are autistic without having a formal diagnosis.

My suggestion would be to ask "are you autistic?"; (yes/no/not sure/prefer to self-describe); "do you have a diagnosis of autism?" (yes, no), would you describe yourself as having high, medium, or low support needs (with an explanation of what is meant by each and an option to self-describe); then "do you have any co-occurring conditions" - if yes, box asking for more details}; finally, an option to "tell us anything else you want us to know about your connection to autis,.

We also need to think about how we ask about connection to autism. It would be useful to know if someone is also a parent/relation/carer of an autistic person or works with autistic people professionally.

Deadline

What needs to be done?

Who can help?


Updates

llewelld commented 1 year ago

It looks like this has been superceded by #543, so I'll close this one.