Focus Group Data
24 September 2019
Contents
- Value of project and motivations to take part
- Experiences of autistic people and their families in their daily lives
- Platform design
- Moderation
- Representing others
- Data management
- Contribution channels
- Ways of working
Key
Where From
- A = Autistica
- T = Turing
- F = Fujitsu
Specialist Role on Project
Connection to Autism
- A = Autistic
- P = Parent of someone autistic
Connection to Experience
- d = direct: experience, suggestion, or opinion of speaker
- i = indirect: witnessed or reported on behalf of someone else by speaker
- g = general comment
1. Value of project and motivations to take part
a) Helping autistic people and their families
- (R, T d): “I think there’s a possibility that we can really make changes to environments in a way that will improve things for autistic people, so I’m very excited to be here.”
- (F d): “I would like to be able to gain a lot of information and at least help my sister and my other siblings and help the [autistic] children in my family.”
- (R T d): “guidance for public spaces…with actions that they could take to make their spaces more accessible”
b) Helping people more generally
- (R T d): “giving people access and management over their own data and the purposes that it’s used for is one of the things that I’m very interested in”
- (F d): “I [have] a real passion for responsible business in general, and making a difference to the communities that we serve”
- (P g): “it’s empowering to people, to give them something that they do have to contribute”
c) Research
- (R, T d): “To…survey as broad a swathe of the autistic community as possible, in order to pull out common themes of experiences”
- (P d): “because I’m a budding researcher, yes, of course, I’m highly motivated”
- (R, T d): “to break autism research out of just being in a lab”
d) Allowing people to be heard
- (R, T d): “I’m really fascinated by this project because it’s participatory, the inclusion of people in the design”
- (A A d): [bringing] “autistic people and family members into research, and other things which gets their voices heard”
e) Helping educate neurotypical people and remove stigma
- (P d): “I’ve always been interested in what makes [my son] understand the world, and how to make things easier for him
- (F d): “I’m really looking forward to listening to people”
- (F d): “It’s been fantastic for me…to get such a better understanding and an insight into [autism]”
- (F d): “I can then help to share those messages within Fujitsu to employees too and raise that awareness…to educate people within Fujitsu and help to support, which is great”
- (R, T g): “…if you already know autistic people you can learn quite a lot from having those conversations, but if you don’t, there are maybe a lot of stereotypes that…perpetuate a very narrow description of autism”
- (R, T d): “educating neurotypical people on individual actions that they could take”
- (P i): “for [autistic son] to make a unique contribution to help others not be misunderstood”
- (P i): It feels good to be the one educating others: “I think that also from the point of view of the person giving the information, how fab will he feel”
- (F d): “being in that situation [of experiencing something] and understanding exactly how it feels as opposed to what I think it feels are two very different things”
(R, *T d): “I’m really excited about…people crossing over between the different groups that they may join the project in, as a member of the [developer] community and as an autistic person”
- (R, T d): “building community and support within the autistic community”
- (P g): “…sharing with the community…I think that would be particularly attractive”
g) Sharing expertise and personal perspective
- (F d): “…being here is actually exceptionally useful, because I can have some first-hand experience in terms of understanding the requirements for the platform.”
- (P d): My other hat is that I’m also a researcher…and the last project…was on autism and anxiety and also sensory sensitivities…so that was why I was like, woo, like it”
- (P F d): “I too am a mother of a child with autism…I can perhaps just bring, again, some perspective”
- (A P d): “I’ve found a few things over the years, and then hopefully I contribute to this project a little bit my experiences”
- (F g): “it’s not just around volunteering and fundraising, it’s using our key skills and expertise to do a project like this”
- (P i): “the participants that I get coming in to do my research, who are nearly all autistic people…they want to actually share, but it would need to be clear”
2. Experiences of autistic people and their families in their daily life
a) General
- (P i): autistic son “loves discovering new places…but sometimes it’s kind of hard, so it would be quite interesting to study that”
- (P i): autistic child finding the smell of deodorant strong/concerning
- (P i): autistic son is “minimally verbal” - can’t read and can’t write.
- (*P d): interpersonal strain, finds daughter’s behaviour unpredictable: “it goes up and it goes down”
- (P i): may have to wait for another bus if the bus is too busy because wants a specific seat
- (A P d): as a parent and autistic person, “I’ve found a few things over the years” which have made life easier
- (A P d): “I know my way underground, don’t put me above ground, I think I’m a mole”
- (P i): “he [autistic son] is very empathic with people he feels are either misunderstood or coerced into doing stuff that they don’t want to do”
- (P g): “it feels awful not to be understood and not to be, you know, to be coerced into doing stuff because people don’t get that it’s actually a really big deal, so that is a real inspiration.”
- (P i): “my son was absolutely losing it, completely losing it, he was just literally shaking head to toe on the train, and I was thinking – can we make it to the next stop? And this bloke came on and he had this full on three piece suit, and he was very chic, [my son] completely knew, he just chose to be very relaxed about the whole thing, he sat down, and that was completely fine”
b) Positive experiences and suggestions for improvements
- (A d): Colour-coding on the floor of stations
a) General
- (A P g): have a popular website with lots of information
- (A P g): “people would go and read lots of exciting information, then from there we can log in and add our own experience.”
- (A P d): something like mumsnet: “there’s loads of people talking on forums…the prompt is you go on there to find out about motherhood, start dealing with all sorts of issues, and then you think, okay then I’ll ask this question”
(F g): Critical to have a website people want to use, that, “we get this absolutely spot on for people to…want to use it and…come back time and time again.”
- (P d): “I’m not looking to go somewhere because I want to contribute…because I haven’t got much time…then eventually when I get some tips, I go, ‘actually I could contribute to that one.’”
- (R T d) “we want to make sure that it’s a safe space and it’s…[an] autistic voice first space”
- (P d): “Could it be divided into different sections? Because so far we’ve got tubes, we’ve got noise, will people come up with categories or something, or just an open free for all?
- (R *T d) some demographic information will have to be collected: “there’ll be some bare minimum information that you have to complete, which I think is just going to be, are you autistic or not”
- (R T d) a lot of analyses difficult if you don’t record who is autistic and who isn’t
- (R T d) (Probable) demographic information to record and request:
- (R T d) connection to autism: whether the person entering the experience is autistic or is a friend, relative, carer, co-worker, of somebody who is autistic
* (R T d) “extremely important”
- (R T d) age bands:
- (R Td) maybe in decades, not necessarily precise age
- (R T d) gender
- (R *T d) “we’ll have some conversations with…more traditional autism researchers”
- (R *T d) a certain amount of information will have to go in your account
- (R T d) you should be able to go back and edit your account
- (A d): segmentation according to demographics
- (A g): “when people are looking at experiences they obviously want it to be relevant to their circumstances, so to some extent it might be a good idea if there was some segmentation in terms of demographics”
- (R T d) “I like your idea…so you’re more likely to see more relevant examples, but we also need it to actually be able to do the research on the other side, because you can quite a lot of…learning from the data by reading experiences and clustering them together”
- (R T d) could allow the machine learning of similar/relevant experiences to be much faster than waiting for data to amass would permit
c) Motivation
- (R T d) “one take home for us is we need to be really clear about where you go, why you’re doing it…simple is key, but also making it quite motivating…explaining why it’s important”
(R T d) videos, for example, from someone at Transport for London, someone at the Barbican Theatre, someone we’ve already collaborated with, saying, we’re interested, like, thank you for taking part in this project, we are so excited to learn from your experiences…”
- (P g): “showing…the end result, not just, yeah, yeah, we’re listening, but we listened and look what we did”
- (R T d) need to gather data to make changes first
- (R T d) Autistica have shared tips of sort of ways to make an environment more accessible, which could help demonstrate value of research
- (R T d) Need to balance making motivations explicit with desire for simplicity many people had also expressed
- (R T g) Motivating information could be upfront or on a separate page
- (F g): a pop-up saying when someone lands on the page with a thank you for coming onto the website, and saying there how beneficial it will be
d) Personal Choice
- (T R, g): “…there’s also something really kind of fun and exciting about people being able to upload lots of experiences…whenever they want to, in whatever way they want to”
- (A d): “accommodate as many different preferences and styles for providing input within the realms of what’s actually achievable”
- (F d): settings page to tailor the visual aspects of the interface
- (F d): use to modify background or colour themes
- (F d): texture options, such as a wooden background, or metal
- (A i): I do appreciate that other people like to customise things
- (A d): “I know I’m different from a lot of people so I wouldn’t want my experience to…hold too much sway.”
e) Clear communication
- (P d): Have a tagline: “this is what we’re looking for, this is what we want from you, and this is what we’re going to do, and don’t be afraid to repeat yourself just literally on every page like, this is what we want, this is what we need from you, this is what we expect from you”
- (F d): an “about” section to clearly explain project and its purpose
- (F d): a dictionary (within the “about” page) to explain terminology
- (R T d) show videos of people contributing in different ways and maybe for different reasons on the about page – “I’m imagining a vignette…of three different people…who take part for different reasons, with the idea that you should totally see some aspect of yourself across those three”
- (P d): “…change your language because already I’ve understood about a tenth of what you were saying - I just go – …interface – I’m lost”
f) Simplicity
- (A d): “I’m very prone to information overload, so I would want from my point of view this default interface to be as plain and un-distracting as possible…I wouldn’t want something that was busy and distracting, it just needs to be focussed on the content.
- (F g): [based on feedback from last session] limit quantity of items shown to user on page to 5 at once.
- (R T g) need to balance features with simplicity: “it’s interesting how much information needs to go on this about page”
g) Navigation
First step (currently) is creating an Open Humans account:
- (F g): “I’m just trying to walk through the process of how you would get to the initial page, you know, would we just type into Google and then you click on the [url]?”
- (F d): “I was thinking originally I would add it to the experiences tab page, to say, in order to submit or view experiences, please log on to Open Humans”
- (F d): “you could probably think of some example applications where…it says, ‘please log in’, and you’d have to log in to Facebook or Twitter the first time.
- (F g): Possible to log in via Facebook or Google as well as Open Humans?
- (R T d): “you do need to consent to Open Humans holding your data, but you can use your Facebook or Google accounts to connect to Open Humans
- (A d): “This might be unique to me…I almost never take up the offer to connect users on Facebook, because I’m slightly concerned about big data, and linkages between different repositories”
- (R T d): “I also don’t do that, and actually one of my goals of this project is to show that big tech organisations don’t need to have all of your data for all of these purposes.”
- (F d): Use an API call to integrate
- (R T d): “I think probably what we would need is to have maybe another little video that people can watch about Open Humans if they want to”
* (P d): “I think that’s too much though”
- (R T d):Optional button people could click on if they were interested to find out more about Open Humans
- (F d): There would only be one login for the citizen science, because we’re using the login for Open Humans as part of the login for this application
- (F g): distracting to be navigated onto a different place, once you’ve gone onto a website
- (A P d): “I go on this interesting website, I can read about autism, and then have a button in the corner – add your experience - and once I go in login from there…I would like to go for something that is useful for me.”
- (F d): Instead of having the navigation across the top, have it down the side in a navigation bar
- (F d): when you hover over items they indicate which area of the application they link to
- (F d): should recognise new users and by default send them to the about page, which then details how to use the application and what it’s there for
- (F d): Pop-up which could give tour of site, and would be easy to click off, on first arriving
- (F d): “when…a video pops up…I’ll just close it down”
- (P d): “possibly what would get me there…and maybe would make me want to come back…would be rather than starting on the ‘about’ page, rather than starting on the ‘experiences’…starting on the “tips” page”
- (F d): “seeing advice from other people coming in”
- (F d): button at top of ‘tips’ page saying, ‘contribute a tip’, or, ‘provide a tip’
- (P d): “then that’s where I would put my experiences, I’d put them in there”
h) Accessibility
- (A d): Have a non-verbal means of inputting information
- (F d): visual symbol on tips cards showing what it’s related to
(* F d): we would need to be able to support screen readers with the application
i) Filtering Experiences
- (F d): filter based on categories of experience that people could select via. ‘tips’
- (A g): segmentation in terms of demographics: “what’s relevant to young people, or adults, is going to be quite different”
j) Toggling Consent
- (R T d): “I hope that it’ll look like a list of the things that you’ve put in with little switches for example where you can change your mind about who has access to what and for what purpose.”
k) How should we ask the research question?
- (A g): “At the moment it’s too general”
- (A P d): “If I just see a page which says tell me about your experiences, I would just blank”
- (A P d): “…it’s too vague”
- (R T d): “the difficulty is…it’s sort of super vague on purpose, because we don’t want to constrain anyone, and only say things about public transport, or only say things related to work.”
- (P d): It’s confusing: “What am I supposed to, what am I meant to do for this, what is the idea behind your project?…as the parent I’d be like, okay, what do you want, what do you want from me, and what kind of experiences”
- (P d): It’s what is expected of us, what do you want me to do?
- (P i): [speaking of an autistic person for whom they are a befriender] “…he wouldn’t understand that form, because, he’d be like, um, what do you want me to say?”
“maybe it’s not something about the wording itself, it’s the user journey of how you actually come to the question”
- (P g): “in order to get people to join up or to contribute in the first place, hopefully you would explain there what kind of thing you would like, so by the time we get here we get some idea of what you mean by ‘experience’”
- (P d): have a tagline, that this is what we want you to do
- (P d): tagline shouldn’t be in the action box, as too restrictive
- (R T d): instead of having just two boxes, have quite a few smaller boxes that appear one by one with much more structured prompts
- (F d): a question mark pop-up which explains what is meant at the end of the question
- (F d): templates that you could submit quite quickly, but also adjust if needed
- (P** d): divide into different sections
- (P d): divide sections up by senses, e.g. visuals, auditory
- (A P d): divide into environmental issues, school issues, and so on
- (A P g): should have some sort of category, but then “the form itself is good, once you’ve gone into your right category, then this is nice and simple, it would be easy to fill out”
- (P g): “make clear to anybody that submitted that this would be useful for other people as well, because that would tailor the way they say things”
- (F d): “potentially not necessarily sharing the actual experience itself because that could be in a negative wording, but actually just sharing the what would you wish to be…different”
- (A g): “…accommodate as many different preferences and styles for providing input within the realms of what’s actually achievable…some people would prefer the free text option…but others would like to be guided down a more structured process”
- (P d): “So what information would you like us to know about what you need from the platform, what is most important for you to get out of the platform, what you would like to see from the platform, and what concerns you about the medium?”
- (F d): Base feedback input on “user stories” template to guide through process- start by directly asking what sort of feature you want to have in the platform, then ask why you have suggested this feature, give reasons and move onto success criteria
- (F d): “alongside this you’d also have your approval to say, ‘I’m happy for this feature to be shared publicly’, and you can just submit and then it gives you your thank you for submitting the feature”
- (A P d): “I would find it much easier to fill it out.”
- (P d): “I understand you don’t want to lead people on what type of…answer [you want people to give]”
- (P g): Makes it easier to understand the type of thing you’re looking for
- (T R d): “That’s only one small slice of what we’re looking for, so that does lead into an extremely narrow set of questions, but it was clearer, but it was only because it was too narrow”
- (P d): “It was narrow, but that kind of thing can be quite useful I think”
- (A g): “Question 1 could be: ‘please look at this prototype platform’, and then obviously that would be self-contained in terms of what the platform’s about, and then you could give people an opportunity to say whether this was along the right lines, whether it needed tweaking, and then you would know that you were getting what you were asking for”
l) Presenting Experiences
- (R T g) “there’s two different points here, one is being able to browse other people’s experiences, and be able to learn from them and see them, and find ones that are similar”
- (A d): Search box for experiences
- (R T d) “I think definitely a search box seems like a really good idea”
- (A d): otherwise it would be quite overwhelming, you wouldn’t know where to look
- (F d): show tags instead of a full entry text box when you search
- (R T d) “…there’s a chicken and an egg problem…in order to build links between different experiences, you have to already have quite a lot of experiences, so you have to already [have] a decent amount of data” – probably something to include towards the end of the 2-year funded window
4. Moderation
a) General
- (A g): “…we have got a duty of care”
b) Who should moderate?
- (A i): Automatic moderation: “in terms of the volume of postings…you can’t manually moderate all that can you? Doesn’t there need to be some kind of automatic moderation?
- (P d): “I know [moderation] is a lot of manpower…person power”
- (R T d) the automatic filtering that you see on social media is extremely biased…so I think it would be really important to do it laboriously, manually, to start off with”
- (R T d): Potentially use automation to scale if platform is more popular than anticipated with customised learning and automated recognition
- (P d): “I don’t think you can get away from it being an individual person, especially when you’re starting off”
- (R T d) distributed team of people who were helping to moderate
- (R T d) I think you would want to have a sort of a central oversight
- (R T d) members of Autistica’s Insight Group or frequent contributors could be shown 5 random comments with option to accept or reject
- (A d): allow people to flag/report post-moderated comments if they have concerns
- (R T g) “there’s a risk…that people who are not autistic may have their own personal opinions about what is right and what is acceptable, and those opinions I think while they might be interesting to observe, are not actually the most important opinions, and shouldn’t be the main thing in the decision-making process”
- (R T d) self-moderation: “you could decide to only see comments by only autistic people, or only parents, or a combination of both”
- (P d): Have a check-list to help people self-moderate: “so before you click ‘public’, you can…check is this likely to cause offense? Is it likely to do this? Is it likely to do that?”
- (R T d) “it should be a representative group of the people who are going to be writing…experiences”
( (R T d) a committee: “I suspect we’ll get to the point where there is a committee where people review applications to get hold of the data”
c) Communication
- (P i): for some autistic people the notions of private spaces are maybe not so well understood, even if they might not have learning difficulties
- (P d): debates about autistic identity: “you can easily cause offense. very, very quickly, so there’s a danger that you could just get into whirlpools of this kind of stuff”
- (P d): “should anybody go off and start going down the ABA route, oh my gosh, oh my gosh, you know you would get a torrent of stuff”
- (R T i) Some will find it positive, some negative, and both responses are valid
- (P i): some will credit child’s success to ABA, others will say they are suffering from PTSD because of ABA
- (P i): “[a friend] spent about half an hour getting that young [autistic] man down the escalator - he was absolutely beside himself – why? Because it was part of his programme, one step in, one step out, and that’s not necessarily ABA, but then other people would say, ‘oh yes in small, incremental steps you will get your child to do and to be part of the ‘normal’ world’”
- (A g): Concerns about commercial use: “[put] a ringfence around potential commercial uses, because this is intelligence which commercial interests might want to get their hands on”
- (A i): “people might be wary of contributing, because they might think people just want to make money out of my vulnerabilities”
f) What should we moderate for?
- (R T d): moderate all comments before they go live, but not moderate for research
- (R T d): personal data or things that would compromise someone’s anonymity
- (P d): email addresses
- (P d): home addresses
- (T, R, d): another risk to anonymity is data triangulation, “where if you have lots of different pieces of information about someone it’s potentially possible to work out who they are, even if there’s no one piece of absolutely identifying information.”
- (R T d) things like personal data shouldn’t go on there
- (P d): swearwords?
- (A P d): “It’s a tough one”
- (A P d): “I’m personally okay with it”
- (P F i): depends on the age range of people logging on: “my 8 year-old nephew who’s autistic, he’s quite tech savvy so he’d be able to come on here and probably go onto the website, share his experiences, but I don’t think you really want an 8 year old reading swear words”
- (A i): “…if you don’t include swear words, we end up quite restricting some people because that’s how they communicate”
- (A d): have a setting to filter out swear words as a child-friendly option
- (A P d): “f-ing and blind-ing all over the place… that’s completely by the by, I really couldn’t possibly care less”
- (P d): discrimination and prejudice: sexist, racist, and homophobic and other comments”
- (P d): “I think bad language is a very different thing from the homophobia”
- (F d): important that the content is real, if you’re “moderating it down, you aren’t getting the actual experience itself.”
- (P d): “You don’t want to make it sort of fluffy clouds, when it’s not”
- (F i): “if that experience is so overwhelming to somebody, you have to express that”
g) Redaction
- (R T d): Option of removing pieces of compromising information, while leaving the rest of the experience intact
- (A P i): “Very complicated, that might be very, very hard”
- (R T d): “it’s very hard to do anything that is not all or nothing”
h) What would help?
- (P d): Guidelines
- (A P d): “you’ve got to have a clear set of rules, from the start”
- (P d): a general rule to make clear what is and is not allowed (like Facebook has)
- (P i): “even if they might not have learning difficulties, it’s still not 100% clear about what’s okay sometimes, [autistic people] may not get the level of intimacy that it’s okay to share, and what may not be appropriate”
- (A g): Don’t start from scratch, look at existing models and how they might be tailored for these circumstances
- (A P g): Who should write the guidelines?
- (P d): it needs to be a committee
- (R T d): A broad range of expertise
- (P d): someone familiar with the many aspects of autism
- (R T i): it is intersectional with other kinds of experience as well
- (P d): somebody who understands the sorts of problems and ways of communicating autistic people have
- (P d): somebody with expertise on GDPR
* (R T g): Would you want to help write it?
* (A P d): “I’m happy to”
- (A d): use existing guidelines as template: “I wouldn’t want to start from scratch, obviously, I’d want to know what is the process for moderating social media, what are the rules, and how might we want to tailor that to this circumstance”
i) How should we manage access to the data?
- (R T d): a selection committee who could decide which researchers could access the data
- (R T d): specific options for individuals to choose where their data goes
- (R T d): “I think almost certainly the answer is ‘no’” [to, ‘should we allow people to publicly respond to posts?’]
- (R T d): “that is social media, and social media is a whole big thing, social media already exists”
- (P d): “yes, and this isn’t a new Facebook”
- (P d): put links to fora for discussion in code of conduct
5. Representing others
a) Important to give everyone a voice
- (P d): If you could not report publicly on behalf of others: “my son’s experiences would never be heard”
b) Consent
- (R T d): “It’s extremely difficult to figure out whether it’s possible to consent to sharing somebody else’s experience…my gut feeling is that, if people want to, I think we could accept if it’s for research, but that data will not be made public for any reason”
- (P g): danger of creating controversy and public argument
- (P i): “you will get parents on the one side who’ll say, my child is as successful as he or she is thanks to ABA, then on the other side you get, I am suffering deeply from PTSD – post traumatic stress disorder – because of ABA”
- (P i): Making the platform less welcoming for autistic people
- (P i): “be mindful that there are autistic people who will read it, and it’ll be their experience they’ll be thinking about, even though your experience is entirely valid.”
- (R T i): “some of the ways that parents sometimes characterise their autistic children can be upsetting to autistic people, and therefore might make it a less welcoming place”
- (P i): [examining example of potential controversial comment]: “’My tip is, this kid is trying to control you, and he needs to understand that this isn’t how the world goes, so be persistent, don’t take no for an answer, and all that kind of stuff’”, do you see what I mean, and you go… ’also understanding parent’s experiences will be valuable’, and they’ll go – ‘oh, it was hell, it was hell, he screamed and he punched and he did all these things’, I’m saying he, could be she, and you go, ‘yeah, I know, but that’s your experience of your son’s, daughter’s really bad sensory experience here’, but be mindful that there are autistic people who will read it, and it’ll be their experience they’ll be thinking about, even though your experience is entirely valid, because it is hell, when you’re trying to get somewhere, and your child has their arm wrapped around your neck and they’re pulling your hair, and often you kind of go, like, and this is a [tall] bloke, and you’re a little person, and everyone’s looking at you going oh, woah, yes, but actually his experience is probably worse than mine.”
6. Data Management
a) Agency
- (R T d): “part of the point of the project is that people have agency”
- (R T d): “the whole point of the Open Humans project…is to empower people to have control over their own data, and that is essentially what we’re doing here”
b) Changing consent
- (R T d): For me…it’s very important for people to be able to change their mind
c) Which Groups or Organisations Should Learn from the Data?
- (F d): the department of transport…”so they can adjust transport for London with regards to tailoring it and assisting people with autism”
7. Contribution Channels
a) General
- (R T d): “the problem with options is there’s lots…which can be complex, so, this is what we’re currently figuring out”
b) Focus Groups
- (R T i): “I think you can feel from the focus of these discussions that it’s really hard to be part of a project this early on, there are so many options, and there are so many unanswered questions”
- (R T d): “So that’s exactly what we need in fact, that’s why these sessions are so useful, because you’re the pioneers of different solutions, and you can tell us this could be better, and then we can make it better”
c) Personal Email
- (R T d): “that’s a private communication, and so we can’t use the comments for our research”
d) Mailbox and newsletters
- (R T d): “So again, we were iterating the design of the letters, so the first one we sent people said was slightly too much information and too many options, so for the next one we made it simpler and specific in terms of what we were asking for.”
- (R T d): “So if you reply to this it only goes to [redacted] and me, it’s not a general discussion, but you can at least stay up to date and we’ll try to send monthly updates.”
- (R T d): “…it’s very vague, kind of blue sky, but there will be a time when there’s a fully functional platform and we’ll need as many people as possible to try and use it”
- (R T d): “…if we copied and pasted it into this box, then we could use it for research”
- (R T d): “I think it’s really important that something like this exists, we just need to do another pass through making it clearer about what the pathway is when you get to it”
- (F d): “The reason I suggested my version of Google Forms was…if you’re confused with GitHub and how to create an issue, I thought that this was quite a good way in order to get your information as a request item and then for that to be able to be translated automatically into GitHub, so you can interface not directly with GitHub, but for that information to be put into GitHub at some stage”
- (A d): “…on the first screen, it just mentions the citizen science platform, but without actually specifying that it’s about an autistic environments project, which isn’t self-contained, in explaining it enough.”
- (P d): “it’s not that bad, it’s just vague. It’s not that I’m confused by it, I just don’t know what you’re asking me.”
- (P d): “you don’t need to change it every week, you just need once to tell me what I need your feedback for is this and this is why I need it.”
- (R T d): “[It’s a big] amendment to ask the University of Cambridge ethics board to allow us to change the wording [of the platform ]each week, for example, but if that’s what people are telling us, that there will never be a case where a broadly phrased question is useful, we’ll try it, or we’ll come up with a bunch of different surveys”
- (A P d): “…as it is, it’s fine for me, but I’ve been to these discussion groups twice, so it’s clear to me what’s going on, but what about the people who haven’t been? I don’t know if they will know what to do with it, or what you expect from them”
- (A P d): An email along with the survey explaining what it is about would be useful.
- (A d): “I’d be happy to use that general way rather than specific correspondence.”
f) GitHub
- (A P d): “this is a platform that open source developers use very extensively, so what we hope is that everyone if they want to would be able to come and contribute, but it’s definitely really useful for the developers”
- (A P d): include diagrams to make contribution pathways clearer
g) Gitter
- (R T d): “So this I would imagine is more likely to be used by developers, or maybe people who are both autistic and developers, and there would be a community of people here, but that doesn’t mean that it has to be anyone, but it exists, and we can support anyone to use it that wants to use it”
8. Ways of Working
a) Diversity and inclusion
(* R T i): “people have multiple different identities, and so having them all work together is going to be…really exciting”
b) Openness and transparency
- (R T d): Availability/accessibility of information
- (R T d): it will be a webpage, so anyone can get access to that just by going onto a webpage
- (R T d): demos to get people to do the first contribution… “little animated examples”
- (R T d): mailing list for people to get monthly updates
c) Communication
- (P d): “I think contacting schools is a brilliant way to start”
- (P d): through Autistica’s Discover network
- (P d): partner organisations
- (P d): National Autistic Society
- (P d): parent forums: “you have to have it on there, for sure, 100%”
- (P d): other online groups
- (P d): word of mouth
- (P d): local councils (as they are mandated to provide services to people with special needs up until the age of 25)
- (A d): social media
- (A d): “In terms of finding adults to participate I think social media seems to be quite successful in finding me… I’m not a big user of social media, but the algorithms seem quite skilled in detecting my interests in research studies and they…pop up…on my newsfeed”
- (A P d): NHS distributing leaflets - offer leaflets about the platform when you get your diagnosis.
- (F d): Link to the Autistica conference using live streaming to promote the platform
- (R T d): Wait until contribution platforms are clearer before doing a big marketing push