Focus Group Data

18 September 2019

Contents

1. Value of project and motivations to take part
2. Experiences of autistic people and their families in their daily lives
3. Platform design
4. Moderation
5. Representing others
6. Data management
7. Contribution channels
8. Ways of working

Key

Where From

• A = Autistica
• T = Turing
• F = Fujitsu

Specialist Role on Project

• R = Researcher

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

Helping autistic people and their families

• (F d): “I’m interested in the enabling factors of the project”
• (P F d): “I have a [teenage] son with Asperger’s, and I’m really excited by all the prospects the work is going to have to make his life a lot easier”
• (A d): “I’m just really interested in helping other autistic people with sensory processing differences”
• (A d): “I dropped out of uni mainly because of sensory issues that I had at the time, so that’s why I’m interested in this”
• (F d): “…it’s extremely exciting…to look at the application or the technology that we can provide…to such an important cohort of users”

Helping people more generally

• (F d): “it’s always about the stakeholders, and I’m here to make sure that we do enough”

Gaining insight from autistic people

• (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”

Curiosity

• (A d A): “it’s quite interesting to see what the project’s going to be about”

Allowing people to be heard

• (R T d): “I’m interested in how we collect lots of different people’s experiences without flattening them”

To represent others

• (P i): “I’m here representing my autistic son”

Helping educate neurotypical people and remove stigma

• (A d): “I lived my entire life thinking I was difficult, and I was annoying…but I now know how to represent it”
• (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”
• (A g): “we want to persuade members of the general public that sensory sensitivities are a real thing”

Creating connections/community

• (P g): “there’s so many things that are shared in common but if you don’t share it everybody thinks, ‘I’m the only one’”

Sharing expertise and personal perspective

• (A d): “I’m here because I’m autistic and also very opinionated…this is kind of my thing”
• (A d): “I’m autistic so I’ve got an awful lot of experience which I hope to contribute to the group”

Supporting and improving research

• (A g): “recently [in] one of the journals someone did a meta-analysis called ‘sensory experiences’, and it’s so prevalent it should be included in the core characteristics of autism, which it isn’t currently”
• (A d): “I’m very interested in what are the ways the data is captured – how it could be interpreted with fidelity, so we don’t lose the meaning”
• (R T d): “I’m really interested now in how we can do open and ethical and transparent research which is slightly more impactful on a shorter-term basis than neuroimaging”

Long term benefits

• (A d): “I think the IT programme project is always the most exciting, because it can leave a lasting legacy”

Learning

• (F d): “I’ve learned more about autism in the last 6 months than I knew ever before”

2. Experiences of autistic people and their families face in their daily life

General

• (A P d): “I’m still recovering from a bit of shock because the council is refurbishing the town hall… I had to travel out of the building in a lift which isn’t finished, so to my mind if someone lit a cigarette the lift would blow up”

• (P i): “my son’s hearing is extremely sensitive, so he needs help” – son can hear conversations others would not be able to, and is troubled by sounds such as flushing water.

Misunderstanding and Stigma

• (A P d): “…by the time I got to the ground floor I was shaking, and had to try to sign out, and explain to the guy why I was upset, and he didn’t seem to think it was of any importance whatsoever”

Communication

• (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”

Travel

• (A d): sound of buskers while walking in Central London – “they’ve all got bloody amplifiers now haven’t they and it’s horrific, absolutely horrific”
• (A P d): “why does TFL think I want to listen to loud classic music in a bus station, you know, Ride of the Valkyries or whatever, it’s making me feel quite nauseous…”

3. Platform Design

General

• (R T d): “everything about this can change, everything about this probably will change, based on what you tell us today”
• (A d): have an organised, online discussions forum
• (R T d): “…maybe you could upload a photo, maybe geotag where you put that photo”
• (R T i): “if you’re currently experiencing sensory overwhelm, an overwhelming sensory environment, that is probably not your most chilled out moment to go ahead and fill out all that information…we…probably will need to add in an option to go back and do it later”
• (A d): “…most importantly I think from a motivation point of view, it’s got to be fun”
• (A d): “it’s got to be educational”
• (A P d): “you could give options for options, so you could say, for example, ‘would you like a template?’”
• (A d): there are two important aspects: what can autistic people do to change their environments, and what can autistic people do to protect themselves from their environments.
• (A g): “if you’re autistic you want to know…[how] are other autistic people with their expertise…dealing with it? Have they got something to solve the problem?”
• (A d): “I would really love to have sanctuaries marked on”
• (A g): “we want to make it as accessible to as wide a scope of the autistic community as we can”
• (F d): if there were multiple pages you’re guided through, have the option to pull out, but still submit information already provided
• (R, T i): “saving for later and…coming back to a draft is really, really valuable”
• (R T d): “one of the reasons that I as a neurotypical person…quite like the one box, is that you can write as much or as little as you want…”
• (R T i): “the flipside is it’s super overwhelming and there’s too many things that you could write, so I understand the need to have some structure, but I don’t want the structure to be a limiting factor on people actually clicking submit”
• (R T i): “really important to road test and user test with autistic users”
• (F d): prioritise a single text box, test it, and add granularity later
• (R, T i): start with three boxes and then extend it, “we’ve heard it so loudly from other conversations that a single box is just not a viable way of inputting your experiences”
• (R T d): “if somebody just says, ‘tube was busy’…that’s still really valuable, you don’t need tonnes and tonnes of information”
• (R T d): drafts could be saved but would stay private, and would only be accessed by the person writing them
• (P A d): have ‘flags’, so specific institutions (such as, e.g. TFL) could be made aware of problems
  • (F i): “I think…the analytics that will be happening post input”
• (F, d): a simple answer is possibly to put in a hashtag feature, and “in the analytics you can then do a pickup on a hashtag and then on a topic.”
• (P A d): highlight that as an option, “because I’m still very used to the hashtag”
• (P A d): important to deliver on promises: prior experience of being incentivised to use an app (Molehill Mountain) because it promised to give a mood graph, and was frustrated when this wasn’t offered
• (A d): automatically link up to physiological data, for example from a Fitbit, so it could be recorded in real time.
• (F d): “I think it’s probably quite far down the track in terms of development, but I think it’s definitely worth having on there that we could potentially look at including physiological data”
• (A d): have graphs linking data
• (F d): there are potential API options
• (R T d): Open Humans [backend provider] allow ways to link up with multiple other personal data sources – including your Fitbit, your genome, your google search, your Twitter account – once you’ve entered your experiences onto the platform, you, “could upload your own data and you can see how those things match up together, so that I think is extremely easily supported, outside of the scope of our project”
• (A d): “I think it would be useful to create age brackets, because it would be extra data for the research…it could be that certain sensory processing difficulties present to the greatest severity in a particular age group – I think that would be very useful to capture”
• (P F d): would be useful to capture age when you are diagnosed
• (P F d): platform could be a route for people to come to find out about autism and then get a diagnosis
• (A P d): translation function: “we’re all being quite naïve that the input will be in English”
• (F d): Input would be free text, so could take any language, but language of navigation of site interesting to consider
• (F d): “potentially we can look at that as a longer-term development, so initially say that the interface is in English but feel free to input in whatever language you wish”
• (A P i): ”a lot of the autism advocacy community…is European and Somalian, and they continue to complain about health interfaces that they really struggle with trying to relay their information even though they’re given the opportunity because when they really struggle with something it’s emotional, but they immediately revert back to their native language and they’ve got no way of filling it in”
• (R T g): “one of the great benefits of citizen science is that it can be a totally global participation…even though it is more likely that people who engage will be English speakers at the beginning”
• (R T d): put together an explanation and documentation of why English has been prioritised
• (R, T d): “bake into the design that it can be translated, you can collect things in different languages”

Use it to see your own data and input (A d)

• (A d): make it something that an autistic person could use with their mentor – help create plans
• (A P d): “definitely” want to see own data and input
• (A P d): would help to trace causes and correlations based on patterns of occurrences
• (A P d): “…with the accumulation of data…you begin to see connections in your own life – and that adds value, you know you were talking about increments of value, but increments of value going both ways”
• (R, T d): because it might be hard to fill in a form in the moment, “…it won’t be the case that you can assess what times of the day people are feeling most stressed based on the data that they input”

Navigation

• (A P): make the address, “something really specific, like Autistica/AlanTuringExperienceLog”
• (A P): make the address, “shorter and kind of clear, [so] the minute you go in and add [your] experience, it’s consistent”
• (A P i): ways of entering text and navigation are different on different devices, so for older people it might help to have the journey guided by arrows, for example
• (F d): a joystick on the page, that…navigates you, demonstrates how something should be filled in
• (A d): sequential navigation, “it’s got to be… logical…if you do this option, take you to the next option”

How should we ask the research question?

• (A d): “…the question, share your experience, is incredibly general”
• (A d): split the question up: “Where were you? What time was it? What happened? What effect did it have? and What would you like instead?”
  • (F d): you could break those down if you wanted prompts
• (F d): limit it to 3 inputs where you could put in a couple of those at the same time
• (F d): capture recommendations and learning
• (A d): “…it’s crucial to have a field that can capture…learning and solutions”
• (A d): Make the question about solutions as well as experiences
• (A d): “I want to be able to say and this is what I think would have helped – you know, it may be that it’s not possible to do the thing, you know we can’t probably make the tube quieter very easily, but we do have ideas about what might help and we should be including those”
• (A P d): include templates: “it would be cool to have an actual template, or, at least you could have the option, right? If you want to try and have this as clear as possible, definitely clicking through similar ones”
• (R T d): “I think…there’s a chicken and the egg problem because you’ve got to have a bunch of people to find similar ones”
• (A d): give people a response when they’ve submitted
• (A d) “…after you’ve clicked on ‘share’ there’s no tangible message that it is shared.”
• (A P d): specifically ask for physiological or emotional information, for instance, does it prompt heart rate, swearing, shouting, emotional response?
• (F g): record positive as well as negative experiences: “there is a lot of psychology that shows us that the more we focus on negatives, the more we find it”
• (R, T d): “there’s this expectation that when people talk about autism they’re going to be looking for negative things, and actually there’s loads of benefits to sensory processing differences”

Motivation

• (A d): make motivation salient
• (A d): “what motivation is there to actually put things on there?”
• (A P d): activity log for Google Guides helps to track input: “it’s my incentive to keep doing them because they let me know I’ve done this, this, and this, you’re in the top 1%, it does keep me going”
• (A P d): “that’s my incentive…I’m being told that my contribution is valuable”

Make scope of research clear

• (A d): “I think you need to have some kind of link to explain what research this could be used for and the limits of what it could be used for”
• (A g): “…there is an enormous lack of trust among autistic people when it comes to research”
• (A g): “I think that needs to be very, very transparent, because there is that lack of trust”

Reading others’ experiences

• ( R T g): Would you be interested in reading other people’s experiences?
• (A d): may cause additional stress: “don’t particularly want to be aroused, as it were, by reading about things”
• (A d): “have a facility where I can go and see other people’s experiences, because that might be most useful to me”
• (R T g): viewable-by-others option means people get something more immediately valuable for themselves
• (A d): People can share solutions with each other: “I can’t tell you how many people don’t know that these exist – these are industrial ear defender headphones with Bluetooth, they are what you use if you want to…listen to music while operating an automatic drill”

User Interface

• (F i): “what are the things with autism to think about lining it up with a visual interface, that is not itself going to be a sensory issue?”
• (R T d): “there’s a balance between being really boring…and being too stimulating, actually”
• (A d): an accessible colour scheme
• (A d): “I think it should be more visual than…written”
• (A d): “the words used, or any writing used” should be “well-spaced out and in a good font that anyone could read - and obviously a screen reader could pick out as well”
• (A d): “make the platform accessible for…non-verbal [people]”
• (A d): “maybe when you’re designing it you can have different colour schemes, or choose your own one, so that it’s not overwhelming”
• (A d): the text boxes could be framed like a mirror, with a wooden background so the text boxes are a mirror on which you write your reflections, “so it’s a very peaceful thing, it’s a very natural kind of place, where you could just relax and write”
• (A d): it’s got to be inviting, it’s got to be visually attractive
• (A d): it’s got to be easy to use,
• (A g): upload pictures of situations that were a problem, so that organisations can go onto the platform and easily see what to change, “because visual things can have much more impact than just…a dense script”
• (R T g): would probably be able to take visual inputs – analysis of them out of scope for user interface; would liaise with colleagues who do computer vision
• (A P d): “you don’t want too many things on the page at the same time, because it’s just too much”
• (A P d): have a satisfying noise when you submit information
• (F i): have the same information available to you whether you’re on your laptop or your phone
• (A P d): “that actually matters to me because I… switch between android and iPad, and It’s how I choose to live my life, but it can be annoying when things don’t work out”
• (A P d): “I get very frustrated by a countdown of the amount of characters I’m using”
• (A P d): “please don’t put a word limit, and especially not seeing it count down, because it’s very horrible”
• (F i): include notifications, which ask how you are feeling, to prompt those who might not be as expressive (for example, ‘how happy are you feeling?’)
• (F i): “…we might be picking up people who are in distress but they’re not reporting it because they don’t want to fill out a whole field”
• (A P d): found filling in diary prompts every day “irritating”
• (A d): “The kind of pop-up, how are you feeling right now…should probably be something that people opt into”
• (A d): “…green would be a good colour – more inviting”
• (A P d): “Yeah, there are some great shades amongst the greens aren’t there, there’s a nice sort of fresh spring, and then there’s that, what do you call it, a middle, sort of forest green –”
• (F d): “Tahuna font is a bit softer than Ariel, so maybe give that a try”
• (A P d): icons need to be slightly bigger
• (F d): have a glossary or dictionary of terms

Accessibility

• (A d): Take into account learning disabilities as an accessibility feature:
• (A i): “it must be very difficult for people who are not as intellectually capable, and quite often they probably just give up in frustration”
• (A i): have a simple graphic at the side explaining site navigation and what steps to take
• (A d): make a button you can press for help to come up
• (A d): pop-up window that explains to you what the text box is, or gives you a visual guide saying exactly what buttons to press
• (A d): less information on one page: “I’ve always been better if there’s less information on one page”
• (A d): bring one thing up at a time
• (A d): have an arrow bar to move onto the next piece of information, rather than having to constantly scroll
• (A d): “just one thing or question or visual per page, and then…press next”
• (A P d): that would make it better paced
• (A P d): have a maximum of 5 things on a page at a time
• (F i): research could be quite self-selecting, “…in a lot of areas the quietest people are the ones who need the most help”

Longevity

• (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”

Benefits to user of platform

• (A d): adapt features such as those of Brain-in-Hand to give people self-knowledge: “it…helped me to work out what my triggers were, and what days were hard for me to be at uni or anywhere”

4. Moderation

How should we moderate?

• (A d): provide some kind of feedback that moderators have experience, because otherwise it just “disappears”
• (R T d): “you do need to know that a) the research is going ahead, and b) you know that it might not appear for 2 or 3 days or whatever that time scale is”
• (R T d): comes down to, “how do you make everybody feel safe in a community?”
• (R T d): “…we probably won’t moderate for [experiences] only used in research”
• (R T d): “there needs to be an option of safeguarding people and making sure that it remains a welcoming environment, and space for people to browse and put their experiences on, so we have a really big unknown at the moment which is how that process will work”
• (F ** P** d): one option would be to moderate all comments from new users, and if they dependably don’t contravene code of conduct, put them into a ‘do not need to moderate’ category
• (R T d): “things can slip through the net, so it is a balance I think between feasibility and an ideal system”
• (R T d): “there is a natural language processing option for some types of moderation, but it is not a perfect option, not an ideal safeguard, and there are problems with potential biases”
• (F d): people could flag comments for moderation, and then be prompted to say which part of the code of conduct it violated.
• (F d): if comments flagged multiple times they could be prioritised for moderation
• (F d): moderators could cross-reference their decisions against general public
• (R T d): “that also means in practise that the whole community of people are moderators, and it’s not just a limited group, anybody could flag a comment, and everyone is involved…it’s more democratic”
• (F d): flagging comments would also help to bring up issues that might not have been previously thought of
• (R T d): “you can remove data from the public immediately…that doesn’t mean other people haven’t seen it, or…copied it, and I think we have to be realistic about what you can retract.”
• (A d): “from a user point of view, people have got to feel safe and comfortable while using the platform…if you get spam or stuff on there, or comments that have not been moderated out, and you don’t feel comfortable with it, then they won’t use it!”
• (A d): “I think you have to work on the basis, unfortunately, that every single corner of the internet which doesn’t have moderation just seems to fill up with Nazis, they’re everywhere, and it happens in the most unlikely places, so I would say at least for the first couple of times you need to moderate the users”
• (F d): “there’s the…malicious side which you need to be wary of…but also I think you need to be helpful to people as well”
• (F d): if someone puts in personally identifiable information, “we should be able to pull that out for them… this is a more positive aspect and a helpful side.”
• (A d): “you can’t just say, ‘this has been moderated out’, you’ve got to provide an explanation”
• (R T d): should we redact parts of comments, or refuse comments entirely?
• (R T d): “if someone had written it to include information that it was dangerous to put online, but the rest of it was fine, could we send a suggested edit”
• (R T i): “it may be offensive to somebody to have their own experience edited back to them”
• (A d): have a panel of autistic people to look over trends in comments

Self-moderation

• (A d): include option to moderate out distressing or negative experiences: “if I’m feeling particularly stressed and I’m going to go on a platform, I don’t want to be reading…a lot of what went wrong on your day, I’d rather click on a button that filters to the – what happened, and what went well, and who accommodated you well”
  • (A d): different types of experience could be colour-coded
• (F d): you could blacklist people whose comments you didn’t want to see, or only see your own comments

Who should moderate?

• (A d): Should reflect people who contribute “I think that it should be a mixture of people, people who are autistic and maybe parents of autistic people, because then it’s a wider scope…if there are gonna be parents, guardians, etcetera…who are contributing, advocating for the autistic person that they care for, that are in their lives…then there needs to be people who are also in that category to moderate, not just coming from an autistic person and vice versa”
• (A d): important to have more than one person look at each comment
• (A d): “they need to be objective, something that might be okay for one person might not be okay for someone else.”
• (A d): option to have multiple people look at a comment without necessarily communicating with each other (but you could see their decisions) - all of the different moderators put their response and then somebody else will collate all those responses (presumably majority sway)
• (A d): “I think you’re gonna need a team of moderators especially if this becomes successful otherwise it’s going to get way too much for one person.”
• (A d): “if you’ve got somebody who’s submitting regularly, who never goes outside the guidelines, you could perhaps invite them to be a moderator”
• (R T d): This could be a branching option, where moderators could select other moderators, and is therefore quite scalable
• (R T g): try to make sure that panel is representative of, not just autistic people but different cross-sections, because they will have more diverse lived experience

What should we moderate for?

• (R T d): “information about someone else that could be either offensive or compromising in some way”
• (R T d): information about someone else that might be distorted
• (R T d): comments demonstrating animosity to autistic people
• (R T d): “we also want people to be able to express a wide range of opinions, and not to shut that down”
• (R T d): “certainly how I was imagining it was that we wouldn’t moderate for research”
• R T d): “there’s nothing that’s not useful for research if it’s handled well by analysts”, for example, exposing existing prejudices
• R T d): what’s public should be, “of benefit to autistic people and their families”, and “representative of autistic people”
• (A d): “…If you have your clear criteria, then it either does or it does not fall within those criteria” – would make the task of moderation easier.
• (A d): “I think you need to have a system in place for what you are going to do to deal with it if you get people posting not in good faith…in some of the dark…nastier corners of the internet they have a real thing about autism…using it as a slur against people, and taking the piss basically”
• (A d): this could also be a problem not just for posting on the platform, but if comments get reposted: “if this shows up and somebody posts it to 4chan, you are going to get thousands of malicious posts”
• (A d): spammers and scammers: “the National Autistic Society site is always getting done by spammers, people who are trying to sell you false passports or all this sort of stuff.”
• (F i): personally identifiable information: “someone might…have had such an anxious experience…that they might accidentally put in their name…or their home address”
• (A d): “people deliberately trying to bias the data by putting in accounts…which pertain to sensory processing but aren’t actually authentic?”
• (A d): if certain themes come up a lot or, “if there is a group of people who are pushing a particular agenda, or a view, or an experience”, authentic autistic people could moderate and say, ‘no, that’s not really us’”
• (R T g): offensive language?: “in a sense there’s something very rational about the expression of anger and frustration, and also very valuable… on the other hand, that could be offensive to some people, depending on how it’s expressed” (A d): “I have no problem with swearing, I love swearing, I’m a very sweary person”
• (A d): potentially have an option in your profile to hide comments with offensive language.
• (P F d): automatically convert swear words into other words
• (P F d): would need to have an explanation in the code of conduct to say these sorts of words will not be published
• (P F d): consider which age you would moderate profanities for: “my [teenager] would want to be sharing his experiences, because he’s very forthright about sharing experiences… I don’t particularly wish for him to see a whole bunch of profanities”
• (A d): things that are offensive such as racism and sexism.

Tags

• (F d): “you can take the tags that relate to the experience, and then you don’t actually see the free text of the experience, unless you want to investigate it for yourself”
• (A d): It could be a good thing to have suggested tags
• (A d): “you would have a whole bunch of people reusing the same tags”

What would help?

• (A d): clear instructions, “I think you need to have a very, very clear set of rules”
  • (A d): rules should use autism-friendly language
• (A d): ask the moderators to accept or reject according to whether or not it breaks the rule, rather than subjective judgement
• (R T d): “would you imagine the moderator would have to say specifically ‘this is the thing in the code of conduct the comment contravenes’, or is it more general?”
• (A d): clearly aligning decisions with rules “…would be helpful, as somebody who…because I wasn’t diagnosed until I was 27…spent an awful lot of time being told, ‘how dare you, you were just rude to make that remark’, and I’d go, ‘what did I do?’, and they’d go, ‘you know what you did’…it’s quite useful to be told what you did”
• (A d): “I agree…clear guidelines of what should and shouldn’t be moderated”
• (A d): “give people a (limited) ability to argue back”
• (T R, d): “…one of the benefits of having the moderation system in place is you could have that conversation privately, so it’s not going to be a problem for other participants, it’s between the person who submits and the moderators”
• (A P d): give people specifics of what they could change for their comment to be included, for example if they are using swear words
• (A d): have clear feedback which is “sensitive, non-judgemental, and constructive, saying how they would alter things”
• (A d): have rules in the code of conduct about crusading
• (A d): ask people from Autistica what they think should be in a code of conduct
• (A d): use other codes of conduct as templates and adapt them
• (R T i): “…involve lots of autistic people, and autistic people’s families, in building it”
• (A d): useful to have a generic code of conduct, email that out, and get feedback on it
• (A d): “my first thought is, this is such a vague question and I can’t think about what I’ve got to say…but if I saw one, I’d be able to say, okay that’s not very clear maybe, or this needs to be adapted, or this needs be added, but it’s very difficult to just start from a blank state”
• (R T d): having some kind of prototype version, but then getting lots of different eyes on that version

Allowing people to comment

• (A d): May create arguments: “…if people could message, like, say about, or comment on the experiences, there’s pros and cons to that because if it’s going to be like a thread style, sometimes there could be arguments”
• (A d): “I’ve been…guilty of it by accidentally saying something that’s offensive, or sounds rude”
• (R T d): replicates existing platforms: “my reasoning, although I would be happy to discuss it further, is that I think there’s lots of places online to have those sorts of discussions about things, and I don’t feel like building another Twitter”
• (A d): personal experience should not up for debate from others, “because it’s my experience, there’s nothing to debate about it - what does some other random know about it?”
• (A g): “I think that will encourage good will, because it will encourage people to feedback more”

5. Representing others

General

• (P F i): “…my son very much is his own person, and he would want to go over what you’ve done anyway…so you’d never be able to get away with a wrong submission”
• (A P i): “there’s no way [my son] is having the same experience I am, but he is experiencing some things which he can share with me”
• (R T d): “I feel like it’s important that we do allow it”
• (F d): Tag experiences, and instead of publishing full experiences in list, publish the tags
• (F d): “…you take the free-text field about how the experience could be improved, and put that against the tag…because it’s very much more positive”
• (P d): “we’re not going to actually get away from parents who through frustration have what they perceive as a negative experience”
• (P d): direct parents to places that might be useful, if they want to talk about their own experiences, instead of having them use this platform
• (R T d): for things which aren’t appropriate to the platform, include sets of resources that could help with people’s issues
• (F i): “I think that what you say is great, because people do need to understand what platform to go onto to try and get support from other parents, but maybe this is not the right platform”
• (A P d): “Yep, yep, so setting some scope, I mean we do need some scope!”
• (P F d): “oftentimes the reaction of the parent or the caregiver can exacerbate the situation – that’s actually a piece of data you might want to research and understand”
• ((R T d): The ways parents and carers narrativize and understand autistic people’s experiences would also be useful for research.
• (P F d): “…it takes an awfully long time to figure out whether it’s a hug that helps or standing back or not – so those are again sensory things that happen that contribute to the data”
• (A P d): “one of the best phrases is, ‘just say what you need’, it’s so simple”
• (R T d): “it would be really useful to capture…not just what are the experiences but how do people respond to the experiences, what effect did that have?”
• (A P d): “being able to reflect on experiences, decide what to do next, and choose solutions would be useful.”

Important to give everyone a voice

• (R T i): “I wonder if for parents, there is something about the parental experience as well that needs to be captured?”
• (A d): “maybe have a separate section for parents, but I do think you probably want to keep them separate”
• (A i): “one of the problems is that parents do feel that they’re not being heard…there needs to be a way of hearing what parents have to say, and to give parents support, without turning it into, ‘God, this is awful’, so the big ‘but’, this doesn’t necessarily have to be the place to do that”
• (A i): could be useful for some parents, especially if it’s a post about what could be done to improve an environment

Autistic voices being drowned out or elided

• (A d): “There are a lot of places where autistic people are sharing their experiences, and they get overwhelmed by other people who have an autistic relative or something, and they have someone else talking over them…it can get really hostile, because I think there are a lot of people who haven’t really absorbed the fact that we have an experience as people, and they’re still thinking of us as difficult children who have to be managed, as opposed to people who have their own experience, and that’s my concern…that we’re going to end up with the same toxic environment if we do that.”
  • (R T d): “I think that has to come through the moderation”
• (A d): “…sometimes…they’re complaining from a neurotypical point of view about how difficult the child is, or the adult is, and I kinda don’t want that…because I feel this is supposed to be a safe platform for autistic people to talk about their experiences”

Guidance for representing others

• (A P g): make sure, “it’s gone through people who might have insight as a parent or a carer, and it’s submitted with the approval of the cared-for person” – this could be a prompt (R T d): “there’s still a problem with that though, the carer saying yes, even though they haven’t actually got that from people”
• (A P d): “I’d hope that they’d be honest, because we suffer very much from being lost in translation… I would censor myself”
• (A d): “I would be absolutely fine with, ‘we went into a supermarket, Jack became upset because the lights were flickering again, this is something that has bothered him before’, whereas I would have a real problem with the parents saying something like, ‘We went into the supermarket, Jack had a bloody meltdown again, I hate it when he does this, it’s so difficult being me’, because we do see an awful lot of parents complaining how difficult we are to deal with – people like us – so I think there needs to be something in there about this group has to focus on the person’s experience not the caregiver’s experience.”
• (R T d): “it should be about the autistic person’s experience and giving it as much fidelity as you can” (A d): “when you ask about a sensory experience it’s about a sensory experience, it’s the autistic person’s sensory experience, not the parent’s. They might be having a psychological experience, it’s not about sensory processing differences”
• (A d): “it’s very difficult to make a place welcoming to autistic people when you also have a lot of neurotypical people explaining about autistic people”
  • (R T g): “that could be a key feature of the platform’s code of conduct”
• (A d): “I think that needs to be a feature in there somewhere, think about how you word it”

Suggestions for processes

• (P d): “I think it might be useful to have a sort of intermediary space where you can share that with your caregiver or your parent…so they can see your experiences, and just look at your experiences, but nobody else’s”
• (P d): “that’s helping make it more understandable, it’s about how they can adjust their own environments, from a caregiving perspective, so to help that individual”
• (R T d): have a collaborative submission, “so one person would write it but another person with their own account would verify it?”
• (R T d): potentially “an added level of complexity”
• (A d): have a separate space with carers or friends where comments could be moderated
• (F d): a template could be set up by the caregiver, and then that could be instantiated by the person being cared for during each experience
• (R T d): “the platform could collect information from parents, but it may not make visible the experiences of parents, we could mostly aim for that?”
• (R T d): “we want this space to be…most in the voice of autistic people, but it would be quite interesting from a research point of view to also be able to capture the experiences of parents, for research purposes, for example to compare and contrast whether people see things in the same way or not.”
• (R T i): “if you were to enter experiences on someone’s behalf, that seems like it needs a special kind of attention to moderate”
• (F d): model on GitHub pull requests: a parent or carer could upload an experience, but then the autistic person would receive a notification, and they could then agree or disagree to it being submitted
• (R T d): “that’s also the kind of process whereby we could potentially collect some metadata to see how often different kinds of experience were accepted”
• (R T d): the disadvantage could be that it makes the structure and interface more complex
• (P F d): important to consider age as well, may be more acceptable for parents to comment on behalf of younger children
• (F d): key difference between a caregiver assisting a person to give an experience, and the parent giving their own perspective on what they are seeing
• (A P d): If you segment the population into autistic people and parents, you need to account for people who are both, who may be filling in an experience for multiple people at once: “I don’t think they should fill it in twice, as the parent and as an autistic adult, to make that decision”
• (F d): have a checkbox at point of the submission of the experience if you are submitting on behalf of someone else
• (R T g): “one possibility for the public comments is that we could exclude ones that are submitted on the behalf of someone else completely”
• (R T g): “the disadvantage of that would be that it would be a whole demographic, so a whole set of people on the autism spectrum who then couldn’t connect to each other”
• (R T i): “parents might really want to connect to other parents”
• (F, d): flag comments made on behalf of someone else for a greater level of moderation

6. Data Management

• (R T d): separate tick-boxes for sharing with research or publicly: “…what’s important here is that you can choose either, or both, so it depends on…the individual person who’s filling in this form – it depends what their motivation for sharing their experience is”
• (R T d): “you can delete [your experiences] if you decide in the future you actually don’t want that to be there anymore”
• (A d): What happens if you don’t click either option?
• (R T d): you would be shown a series of your own experiences, and some researchers could see them, but they would not be made public or used for research
• (A g): “…if you use it for research will you get contacted in any way?”
• (R T d): “that is an open question – so can you tell us would you like to be contacted, or not be contacted?”
• (A d): “I guess it depends on the kind of information that I’m sharing – if it’s not something that I really want to revisit again, then maybe not”
• (R T d): consent for future purposes (don’t need to be re-contacted but can withdraw) an option
• (R T d): the way that we want to design the platform is that you can remove the consent. at any time, and that’s an important point
• (R T d): more fine-grained consent checkbox, with more frequent recontact, also possible

7. Contribution Channels

General

• (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”
• (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”
• (A P d): found colour-coded visual diagram of different options useful
• (R T i): “I think if someone turns out to be very challenging but it’s not obvious from the outset that it’s going to be challenging, that’s much more irritating than if it’s clear from the start that you probably need some sort of technical background”

Focus Groups

• (R T d): “a treasure trove of ideas”
• (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’

Google Form

• (R T d): from a research perspective this is the preferred option, because we have ethics approval, so anything that gets put in here can be used for research
• (R T i): “this is a way to reach the people who may not be able to join the discussions in person as well…who may struggle to reach the venue”
• (R T d): a way to reach people who have additional thoughts
• (R T g): you could always fill this in as many times as you want to
• (R T g): everything that is entered is public, but participants will be anonymous
• (R T g): all comments will be moderated by the research team before they are published
• (R T g): “the reasons [the question] is so general is that we didn’t want to impose anything on anyone, we just wanted the ideas to come from you”
• (A d): “’needs, priorities, desires and concerns is far too long’…is there a word that you could use that covers all of them like ‘expectations’ or something?”
• (F P d): it could be broken up to make it more precise
• (A d): “I think you do need to split it up into: ‘what works?’, or, ‘what do you want the website to be like?’, or, ‘what different sort of posts and experiences would you like?’”
• (A d): “What do you want to get from it? What are the most important things for you? Do you have any more concerns?”
• (A A d): splitting the box up might be problematic if you just had a random thought come into your head
• (A d): you could always have a ‘miscellaneous’ box for those sorts of comments
• (R T i): splitting it up might make people feel they have to answer a series of questions, but they might only have one thing that they want to express
• (F d): “You could just use the same approach of taking the form and generating a user story, so, ‘as an x, I would like this because, for this reason’”
• (F d): If you design the form to ask questions like user stories, it would be fairly simple to translate it over to GitHub.
• (A d): “’what information would you like me to know about blah blah blah’ is a very long way of saying, ‘what do you want us to know?’”
• (A d): “’tell us what you want’…it’s very indirect, it’s quite irritating”
• (A d): “If you [ask] tell us what you want us to know, it’s an even broader question, it could mean absolutely anything…we need to ask questions that are actually relevant to the project.”
• (A d): “you could put it very simply – ‘what do you want this project to do?’ And then you could split it down into the areas that you might want to contribute to”
• (P F d): “from a usability perspective oftentimes we’ll ask a yes/no question …you don’t see the box if you don’t have a concern, but if you do you can put it there”
• (A P d): if presented with a word limit, “I immediately disengage… I expect you to design it so that I am not going off on tangents and going nuts”

GitHub

• (R T g): “it’s…open to anyone…[but] it requires some technical proficiency”
• (R T g): found GitHub a really valuable way of working with autistic collaborators, “because we could have a discussion”
• (A P d): “I thought it was quite useful to have somewhere to come, I did relate to it
• (A P d): “It was my first time using it…so I’ve got the jitters about GitHub and things like that chart forum”

Gitter

• (R T I): “in theory it’s open to anyone, anyone who wants to chat can make an account and join and be part of a conversation, although it may not work that way in practice”
• (R T d): it can be anonymous but linked to your account
• (A d): “I don’t like group chats…I get overwhelmed with it, especially if someone keeps tagging me…asking me questions, I wouldn’t really use it unless I had to”
• (F i): “this sort of thing is really useful for developers, for the people who are actually involved in building the code… if you find this to be a little intimidating, I wouldn’t worry about that. There will be another way to give your thoughts and your requirements and this is most useful for the programmers”

Website

• (R T i): “I guess this is the easiest way of finding out about the project”

8. Ways of working

General

• (F d): “…at this stage we’re a really blank piece of paper, and we’d like to get some initial thoughts from you guys that we can then put onto our backlog”

Collaborative

• (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”
• (F d): “there’ll be some members of the team that you’ll work with more regularly, so we need some form of structure to this”
• (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”

Agile

• (F d): “agile doesn’t lend itself to sort of old style, traditional project management, but it does still require a degree of structure to it”
• (F d): “devops as a concept is essentially where you put your programmers and your operations people together, then we get things to happen much more quickly”
• (F d): “– that’s what agile is all about, we can change direction if we need to, if we’re going down the wrong track it’s very easy for us to just stop and go with the new requirement”
• (P F d): “bring stakeholders in really early into the conversation and talk to them lots, on regular occasions, and then show them throughout the entire lifecycle”
• (P F d): requests always go on the backlog, it doesn’t mean that they will be built, but they will be prioritised
• (P** F d): “The reason that it always, always goes on the list is because it might not be a good idea today, but it might be an incredible idea in a while”
• (P F d): “we try to keep the acceptance criteria as crisp and clean as possible”
• (P F d): “very generally you want a really stable velocity”
• (P F d): flexible in pulling backlog into sprints depending on team’s capacity
• (P F d): “in each one of these two-week cycles, not only are we doing planning, we build it, we automate it, we test it, we document it and we review it”
• (P F d): preparing marketing plans and preparing communications also often part of the sprint
• (P F d): “it’s really important that we do [stand up] every day, because that’s holding each other accountable to the commitments that we’ve made”
• (P F d): “we want to keep that backlog really clean, because there’s nothing as scary as an out of control list”
• (P F d): have a retrospective immediately after sprint is finished and product is demonstrated to stakeholders
• (P F d): “that means that throughout the entire lifecycle we’re constantly tweaking and tuning how we work together”
• (A g): “how do you ensure that you have a common language with your comms and your marketing people, and that they are up to speed with what you’re doing?”
• (P F d): “they will be with us the entire time…they will be included because their tasks will be a part of the delivery goals”
• (F g): “how do we make sure that what we’re doing…against our branch isn’t being replicated?”
• (P F d): ‘this co-design should be the product owner and the scrum master doing a really good job with that backlog review”
• (F g): “it would all be centrally managed in terms of the integration of the development of features by…The Alan Turing”

Open

• (F d): “I’ve taken a fork off of the Alan Turing repository and we kind of have our own dedicated branch for this interface piece of work that we’re going to be involved with, but that’s also public”
• (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.”
• (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