# Community Involvement Strategy

## Define who is already involved and how they are involved

* Individual volunteers
* JS (DCMS)
* SF (IG)
* SI (IG)
* OS (ATI)
* SM (UCL)
* SF (Autistica)
* AC (US)
* TA (BBC)
* Autistica's insight group
* Current participants
* Autism researchers
* BH (UCL)
* SH (UCL)
* ? (UCL)
* SFW - reviewing research papers
* LC - reviewing ethics
* Other academics/researchers/activists
* TA (AtH) - diversity and inclusion advocacy
* ZL (UCL) - build environments/architecture researcher
* Representatives from institutions/organisations
* BSI (TLS)
* London Fire Brigade
* Uniformed Youth
* Barbican
* DCMS
* NHS
* Autistica
* JC
* BD
* EC
* YD
* SF
(* Fujitsu - individuals
* AH
* CH
* TS
* ED
* CL
* PC)
() * Fujitsu - groups
* SEED meeting - group/network
* PC's network
* mental health week)
* The Turing
* KW
* GA
* MC
* RP
* MS
* SG
* Open humans
* BT
* CRI
* AK

## Possible New Channels
* Autistica - more thorough involvement
* NAS
* Autism activism groups (with a priority of groups outside of London)
* POC/intersectionality groups
* University groups
* Schools
* Autistica comms network (e.g. via. Twitter)
* KW network (Twitter and networks)
* Turing social media networks?
* Participants' social networks
* Open Human's network
* Mainstream Media
* Corporate partners? (Perhaps we could get larger companies to publically back the project, TFL would be a great one due to environmental interaction element)
* Influencers/Celebrities?
* Civil service in general
* DDAT in particular
* contact WhatsApp groups - put out a call for help and especially autistic collaborators
* Also disability networks in government - gov can pay people for upskilling?

## Where/on what we need input (design, user testing, documentation feedback etc.)

* Comms and community engagement
* Design
* Development
* User testing
* Co-design
* Reviewing work (inc. dev work, videos, documentation)
* Diversity and inclusion
* Interpretation of data
* Ensuring the research questions are tailored to the community and are relevant (much of this has been done via. The James Lind Alliance to choose topic of research - more work needs to be done on the specific phrasing of the question and how we chunk it up - this is a platform feature: we need this as part of user testing)
* Maintenance - planning and support.

## Who we need to ask

* Autistic people
* [(A d): “I’m autistic so I’ve got an awful lot of experience which I hope to contribute to the group”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#sharing-expertise-and-personal-perspective).
* [(A g) :“We want to make it as accessible to as wide a scope of the autistic community as we can”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#sharing-expertise-and-personal-perspective)

* Autistic people with complex needs
* Autistic people who are non-verbal:
* [(P i): “…although my son’s autistic, and he is very high-functioning there is a point where…he is very non-verbal, so I have to meet him halfway in sharing something”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#communication).
* [(P i): “My son can’t read, write, or speak”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20191004_summary-4-October-2019.md#f-communication)

* Wider community (friends/allies/carers/professionals)
* [(R T g): “There will be a range of levels depending on your technical ability and what challenges you are able to go through to access it"](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(F d): "It’s always about the stakeholders, and I’m here to make sure that we do enough”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

* Autism researchers
* [(F d): “what we should be thinking about as well is…the next generation [of contributors]…they should be able to contribute just as easily, and so if we can think of any ways to make that easier, then we can start putting those into the process now”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(R, T d): “the benefit of building it in an open source way is that if we aren’t able to do [a feature like translation] … another community might be able to, and we’d be able to facilitate that.”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* Autistic people and famillies
* [(F d): “I’m interested in the enabling factors of the project”]
(https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#helping-autistic-people-and-their-families)
* [(A P d): "Found colour-coded visual diagram of different options useful"](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#sharing-expertise-and-personal-perspective)
* NLP experts
* RP and MAC ATI
* Data/database experts
* LB - ATI
* Designers and Developers
[(F d): “so it’s really important for me to be here and understand everyone’s opinions here because I’m going to be the one who makes things”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

* [(F P d): “it’s very important that you’re engaged throughout this process, because really we’re building this for you, and with you”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(F d): “…what I’d really love to see is the connections just to be created between people, if you want to know about something, if somebody from our team wants to understand something from your perspective, let’s have that conversation](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(F d): “…what I’d really love to see is the connections just to be created between people, if you want to know about something, if somebody from our team wants to understand something from your perspective, let’s have that conversation](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

* Community management experts
* Comms experts
* Non-autistic people who can use the platform to learn about autism
* [(A g): “we want to persuade members of the general public that sensory sensitivities are a real thing”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#helping-educate-neurotypical-people-and-remove-stigma)
* [(F d): “I’ve learned more about autism in the last 6 months than I knew ever before”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(R T d): “one of the reasons I’m so excited about it is you could have neurotypical people read the experience and understand better”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

## How can we reach them (which channels/dissemination and comms)
* [(A d): have an organised, online discussions forum](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#communication) [
(R T d): ‘…one of the things that comes out of the discussions is how much people’s thoughts and ideas and priorities exceed the scope to discuss them in person](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

* Autistica/Insight Group
* Networks - PC and TA
* Workshops
* Existing communities - ask for support
* Universities/academic contacts
* Conferences
* Giving talks
* Blogs
* Social media
* Twitter
* Tweets from a celebrity to launch platform (TA)
* GitHub online community
* [(F d): “given the fact that…the GitHub repository is open to anyone in the world who is interested in contributing to the project…in Fujitsu we are mobilised, with our talented developers](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#open)
* [(F d): “given the fact that…the GitHub repository is open to anyone in the world who is interested in contributing to the project…in Fujitsu we are mobilised, with our talented developers, to tap into”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)
* [(R T g): “I think the ideal is that we would have lots of options, so people with different preferences would choose the ones they like best”](https://github.com/alan-turing-institute/AutisticaCitizenScience/blob/master/community-recommendations/focus-groups/20190918_summary-18-September-2019.md#learning)

## Specific asks
* Review qs - answer specific questions and watch video (CL) - co-design - rephrase

## How we use/record the feedback
* We need to follow the protocols for which we have ethics approval

## Inclusivity and accessibility checks

#### Strand 1- Diversity

* Are our current networks adequately able to capture the full range of diversity within the autistic community?

* If not, how do we engage these audiences to ensure they have the opportunity to participate in the project? What additional networks and channels can be leveraged (other charities, pressure groups, social media channels, forums).

* Is our approach London centric? Do we need to consider how to reach a more diverse geographic networks?

* What are the hard to reach areas? How can we reach these areas? (community engagement, social media engagement etc).

* What do we know about our current network? Does it trend towards particular background, locality, race, gender, socio-economic or stands of neurodiversity? Do we know, how do we know, how do we change it?

* Perhaps we could do some stakeholder mapping?

#### Strand 2- Pathways to engagement

* Do we think the current participatory environment is truly inclusionary?
* Where and how do we think it can be improved?
* Onboarding etc?
* I think we should try to think this through using the ‘5 stages’ Malvika’s slide set-out which is really good.

* How can we cater for the disparate needs, skills and availability of participators. Is our current approach too generic and cookie-cutter (ie. Sign-up, take part in user testing, focus groups etc)? Does this approach work for most? · What other routes are there for members to participate representing the likely future shift in the projects priorities? Publicity, social media advocacy/comms/dissemination as well as wider research.

* Is there value of community members taking a more passive role, particularly as we begin the rollout and we build up a community of members, perhaps as supporters?

* Is there a route for people to move up the stages of participation? Another question is what if people want to do less, not more or want to do something outside of our framework? The overarching question for me is are our systems flexible and inclusive enough to respond to peoples needs?

* We need to talk about Github. Is it really the place to run a participatory people for non-neurodiversity people off? Is it prohibitively off-putting? What are the alternatives?

### Strand 3- Path to delivery (rollout)

* We want to ensure we capture as wider and diverse range of responses as possible to aid the study. To do this we need a really effective dissemination approach to autistic networks. As a result Strands 1 and 3 go really closely in hand as we need to have reach across the community. To an extent it also links into strand 2.

* Success will also be predicated on a successful comms/dissemination campaign. However I think this is a slightly different piece of work then the two proceeding strands.

### Next Steps (what I want to find out)

* Understanding where our gaps are asking if we are truly inclusive.

* Any reading on participatory projects with a particular focus on engaging ‘harder-to-reach areas (particularly lower socio-economic’?

* Undertaking stakeholder and dissemination channel mapping. Who should be involved that isn’t, how do we reach them, what areas are not currently being exploited etc?

## Opportunities for growth
* 'Hard to reach' people in the autistic community

## List of organisations to contact:
* Autistic communities:
* [AutAngel](https://www.autangel.org.uk/community/)
* [AutismVoice](https://www.autismvoice.org.uk/)
* [Ambitious About Autism](https://www.autism-alliance.org.uk/ambitious-about-autism/)
* [Autistic self-advocacy network](https://autisticadvocacy.org/)
* [Aspens](https://www.aspens.org.uk/our-mission)
* [Centre for BME health](https://centreforbmehealth.org.uk/resources/toolkits/)

## Useful resources

https://www.w3.org/WAI/standards-guidelines/wcag/

---

- Who do we have in the community?
- Volunteers from different places (i.e. Autistica, BBC, Turing, Fujitsu)
-
- Tips for nascent community
- https://docs.google.com/document/d/12IeEdLcLctBnRVhoi3oGQNWKS9KqU_aZpjQo2XdXcRA/edit
- ask volunteers different questions and record them with their permission on Zoom - and have your own youtube channel when you can add them
- Create an onboarding step-by-step

- Video example: https://twitter.com/AutismScotland
- https://www.youtube.com/watch?v=C0yYFyHAG3s&feature=youtu.be

- example layout for leading through story: https://2018.carpentrycon.org/

- Useful tools: Hackmd

- Example images



- Mountain of engagement:

- Slides: https://docs.google.com/presentation/d/1ipIUc1t6ogOpyK9gU_PPgD-UvW0Gs73pMIAdCLOG72Y/edit
- Assignment: https://docs.google.com/document/d/1X2-oXvq5ET30-hCcgWEG5iLvv9FbAiuEgXuVY5hle8o/edit

Resources:

https://www.filepicker.io/api/file/JBBnlYcIQlGAth3Uaw9F
https://mozillascience.github.io/study-group-orientation/3.2-know-github.html


https://network.autism.org.uk/knowledge/insight-opinion/supporting-bame-autistic-people-and-their-families - article on autism and BAME

Charity that supports BAME people with autism
https://www.autismvoice.org.uk/

Excellent blog on non-verbal autism
https://researchautism.org/i-have-nonverbal-autism-heres-what-i-want-you-to-know/