Focus Group Data
04 October 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) General
- (R T g): “I think there are multiple different aspects of why people are interested”
b) Helping autistic people and their families
- (P F d): “I want to do whatever I can to help [my son] and everyone else with autistic spectrum condition.”
- (A P A R d): “we’re not interested in autism, we’re interested in autistic people and their families, and ultimately how we can improve their lives, so this project is one of the most exciting examples of that”
- (R T d): “it’s hugely motivating, because I can see the value in it to actually have a huge impact on people’s daily lives”
- (A P d): “…make it easier for people to, I wouldn’t say function, I would say live…bring their talents out, uncover their potential”
- (F d): Impact
- (R T d): “…informing, hospitals, schools”
- (F d): influencing organisations and public bodies to try and adapt how institutions work with people
- (F d): adapt environments to help them be more comfortable
- (F d): “help people become more productive and…comfortable in the way they live and work, and in their daily lives.”
- (P g): “I think that unless changes and adaptations are made, we don’t know the full scale of what some people with autism are actually avoiding altogether, and never actually getting access to”
c) Helping people more generally
- (F d): “…those issues do overlap with people who don’t have autism, and so where we can…tease out issues with environments it can only help…to improve everyone’s lives”
- (R T d): “[making] research broader and more efficient and more useful”
- (F d): “[It will] help make the world a better place I think ultimately for everybody”
- (R T d): “The way it’s being run is with mindfulness of inclusivity and empowerment and how do people’s voices get heard, and that to me is hugely vital, for science in general”
- (R T d): “I’m…interested in adjustments to the environment that…enable everyone”
d) Attracting autistic people/harnessing their value
- (F g): “We’re on a journey at Fujitsu learning what it is to embrace neurodiversity…we’ve got to make ourselves more attractive to neurodiverse people, because the value they add to the organisation is absolutely massive”
e) Allowing people to be heard
- (A d): “It gives people who may not usually have a voice a representation”
- (F d): “…giving a voice is amazing.”
- (A d): “I can’t think of anything that is dedicated solely to autistic-related research in terms of actually having a platform for that”
f) Helping educate neurotypical people and remove stigma
- (P d): “I’m interested in helping to educate as much as anything, employers”
- (A P d): “I think that improving sensory environments is absolutely instrumental to removing stigma in society associated with this condition”
- (F d): “…to be able to share information and really understand what people feel themselves going through”
- (A P d): “awareness is really important – understanding”
- (R T d): “we can gather together common themes…but also the nuance of experience, and I think this will help people to make…more sensible adjustments, that aren’t just assuming everyone with autism has the same needs and wants”
- (F d): “I’ve suffered from mental health issues myself, and it’s certainly changed my perception for then understanding what people go through, and I think having this platform to be able to share that information and really understand what people feel themselves going through…I think is vital and will help make the world a better place, I think ultimately for everybody”
- (A P A R d): “I believe that [Autistica has] a unique opportunity to facilitate partnerships, including the involvement of autistic people and family members”
- (R T d): “I’m really interested in…trying to find out ways of having people effectively collaborate with each other, so I’m really interested in the discussions around that as well”
h) Sharing expertise and personal perspective
- (A P d): “…to give perspective on autism as a parent and wife, and as a lawyer”
- (F d): “…understanding what it is about sensory perception, what it is about our environment we need to understand, or we need to adjust …really excited about this”
- (A P d): “…it’s not just expert advice, everyone is…coming from their life experience, from their relative’s experience, and they’re saying, ‘it helped someone, I’m sure it would help others’, so I think a project like this is important”
i) Getting suggestions and recommendations
- (F i): “I think there was quite a strong preference…to get tips from the platform, i.e. helpful experiences in terms of how people could adjust the environment”
2. Experiences of autistic people and their families in their daily life
a) General
- (A P g): “…certain environments are off limits to many people with autism because of the sensory implications”
- (A P g): “…a lot of the sensory stuff [affects people in the same ways], noise…flashing lights”
b) Shops
- (A P d): “Boots, is re-doing a lot of its big stores, and the whole ground floor is now a perfumery…I’m sensitive to perfume, so I’m gonna avoid Boots now”
- (P d): “a lot of big stores the minute you walk through the door you’re bombarded with perfume and things…they make my headaches worse”
c) Hospitals
- (P i): “…my son had to have a dental operation last year…it was a dreadful experience…the anaesthetist didn’t understand, the staff didn’t understand. He was put in a room with lots of screaming children in the recovery.
It culminated in him biting through his tongue, biting through his lip. His sensory overload was huge”
d) Employment
- (P i): took son 2 years to get a job after he graduated, even though he’s brilliant and reliable, because he doesn’t talk enough for interviews, “I think a lot of the time employers have no idea how to approach interviews with people on the spectrum”
e) Education
- (P i): “once [my son] went to university he struggled because we didn’t realise it was the autism, because he also has a disability related to autism, a physical one that also often comes with autism”
- (P i): “the second son with autism struggles a great deal. He’s at university, and it became apparent how challenging that was for him”
- (P g): “…it’s just so noisy in a tiny classroom”
- (P i): asked for someone to accompany son between classes, “because a small person amongst a thousand odd very tall people, can be quite overwhelming…he had a few meltdowns, and he was sort of hitting out…it wasn’t hitting anybody in particular, it was just – panic”
- (P i): “teachers don’t seem to have any knowledge or awareness of the needs of people on the spectrum”
- (A P i): [son was] “…put in a party house this year on campus, and he’d asked for a fridge in his room because he cannot go in the kitchen when other people are around…he wrote and said, ‘Where’s my fridge? I’ve got to store food away in there’…Disability services, who should be aware, wrote back, “…until we find a fridge, please do it”
- (A d): “I got too much support…they just gave me…a teaching assistant for every single classroom…I felt like I really didn’t need it, because it actually just distracted me from work”
- (A P d): “it took me several years to convince his [autistic son’s] school to serve plain pasta, so he doesn’t have to explain every time that he has an eating disorder”
- (A P i): dealing with students with autism and other disabilities is a lot of work, “I am fully aware, because I have autism and I have children who struggle, I do the extra hours.
No other staff member does, and it affects me therefore, because I kind of take on responsibility for all the students”
f) Communication
- (P i): “My son can’t read, write, or speak”
- (A p i): “[My son] finds it difficult to talk in a lot of situations like going to the doctors for example, so I have to go with him”
- (P i): “my son can’t… verbalise how [he] feels…whenever you ask him how he is even if he’s got a streaming cold, he always says, ‘I’m fine’”
- (P i): “…he struggles to talk – he normally texts me or write notes”
- (A P A R d): “I guess it’s a bit like building blocks…maybe if that person didn’t have elevated anxiety levels because of the sensory environment they might be able to communicate a certain level of need, but then if you put them together [it becomes challenging]”
g) Misunderstanding and Stigma
- (R T i): “…something that has come up a few times is this expectation that if someone is having difficulty…the problem is they’re being difficult or awkward, when…often it’s the environments that we create and the ways that we interact that’s the problem, and I think that’s a really useful thing that hopefully this [project] can help address”
- (R T i): “this seems…a big theme: people making assumptions, instead of listening”
- (A p i): “…people mean well everywhere, they want to do the right thing, but the problem is that, quite often, they don’t have a standard, because they don’t have expert guidance”
h) Travel
- (A p d): “I think transport is one of the hardest”
i) Adaptations and solutions: experiences and suggestions
- (A p g): “when you integrate sensory adjustments into the environment…you make people’s lives easier, and they can keep certain sensitive information about their condition to themselves, and it empowers them in a big way”
- (A p d): “…if you just put it into a standard…[it] loses all the richness”
j) Listening to individual needs and offering choice
- (A p g): “sensory inclusiveness, so you offer choice, without forcing the person to explain, and this is so easy, and at the same time it’s of enormous benefit to people, because they don’t have to disclose their condition, they are given the choice anyway”
- (A d): “’I know what I want, I know what I need, can you do this for me, yes or no?’ And then it…speeds up”
- (A d): “just having the flexibility I think’s one of the most important things”
- (A d): “you should be the one to approach [disability services] rather than vice versa”
- (A p i): “There’ll be many young people that wouldn’t approach disability services, and not realise that they have to”
k) Having an “autism hour, or ‘quiet hour’ in busy public spaces
- (A i): “…there’s some online backlash…people are saying ‘this isn’t enough’, ‘Why can’t it be like this all the time?’, ‘Why does it have to be background music?’”
- (A p i): “there’s specific times that might not be convenient, people have different sleeping patterns and everything, and my son wouldn’t go to them”
- (A d): Would be good to have some quiet times “…at my local library…they have mum and baby groups there, it’s kind of like the main community hub of my town area”
- (A A d): “so the idea of a noisy library is fantastic for me, I would love that… [important to let] people document the different types of experience that they need”
l) Adaptations in schools/universities
- (A p d): let people come in either half an hour early or half an hour later
- (A p d): everybody used to signing for the register, “so there wasn’t that tumultuous start to the day”
- (A p i): “we made loads of different adaptions, and it really worked – for all the children… I think to be honest we saw that the concentration levels of all the children improved, with just those adaptions in place”
- (A d): “they could install sound fields to improve auditory processing for some children”
- (A d): “we went to Germany recently, to look at some programmes they were doing to educate people about the holocaust and Nazis and fascism, and there was one…voluntary group…going to schools and training the school children in awareness, so it could be [done] with this data”
n) Education
- (P i): “…they [son’s university] were just so helpful, and he stayed in halls the whole time, because he couldn’t cope with a party house”
- (A d): “the support services [at university] are actually pretty decent”
o) Hospitals
- (P i): Experience of autistic son’s dental operation:
• best interests meeting beforehand
• learning disability nurse [to] pass information on
• lights all dimmed
• autistic son only one in the recovery room
• autistic son given a pre-med
• things being explained clearly/factually: “the anaesthetist understanding not to talk to him like a baby”
• allowing him to lie on the bed and then have the same bed wheeled in
• “this was the same operation, but with a few moderations – no trauma, nothing - and it was a great experience”
- (P d): “I recently had a knee operation…I was told every step of the way exactly what was going to happen, but if I wasn’t…it’s quite overwhelming even for a neurotypical person…”
- (A A d): [Being treated for a broken foot]: “I was very impressed…they knew I was autistic and they did give me support”
a) General
- (R T d): “make the user interface as broadly accessible as possible”
- (A d): “having…one place where you can find everything…and the potential to have that expand, I think is really helpful.”
- (A d): privatise where your location is for the public site and research, but use information for individual to get location specific pop-ups
- (A d): “…having the option to…upload photos, or pictures, or voice recordings of people.”
- (P g): “A lot of people do communicate quite visually, or understand things visually, so that would be useful, if people could have pictures”
- (A p d): “communication with pictures, voice to text interface” to improve accessibility
c) Filters for different kinds of user
- (A d): “that would be good…if you’re an autistic person who wants someone to relate to…you can always filter it through to see personal perspectives, whilst…parents might be looking for a different thing”
- (R T d): “[maybe there is an] opportunity in this for autistic people and parents to empathise with each other through sharing experience…if you segregated the responses, it would prevent that from happening”
- (P d): “you wouldn’t have to segregate them… you could just… have a drop box where people choose whether they’re parents, people with autism, teachers, employers…”
d) How should we ask the research question?
- (A d): “…[make] sure the question’s not broad”
- (A d): “…remind all people that this isn’t the experience of all of us, it’s just the experience of a good handful of us”
- (R T d): “we’ll probably ask people to share a lot, and then it’s on the researcher, to…tease out the sensory processing aspect”
- (R T i): “I think the only thing that I’m slightly worried about is if people feel that the experience that they’re sharing that is not related to the sensory processing doesn’t get the same level of attention, in the published research… [solution is]…setting expectations”
- (A P d): “I think that when we collect several experiences for one particular environment, [researchers] can actually analyse that environment, without [participants] actually going into sensory analysis”
4. Moderation
a) General
- (R T d): “[moderation] is purposefully a lot of work, in order to maintain a safe and inclusive space”
b) Delayed response
- (F d): “[how] important is the immediacy of that information? Because, if everything is going to go through the moderation process, then maybe the salience of…advice is lost.”
[potential solution multiple input channels, select for immediate response, free text otherwise]
- (R T d): there are other platforms, such as social media, for immediate responses
- (R T d): “I think we are going to have to do a due diligence of at least at the beginning, reading everything that’s going to be made public to make sure it’s not…insulting…or identifying…so there probably is going to have to be a time gap”
- (A P i): “…it’s a very high standard to review everything, and give them advice, and do all of that, it might become unworkable”
c) Who should moderate?
- (R T d): “…one thing that we’ll almost certainly do is have a diverse group of people moderating those public posts, so I think there’s a little bit of a safeguard”
d) Communication
- (R T d): “an option is for the moderating team…to send a message back to the person that uploaded it to say, ‘these are the things that we’re concerned about, it doesn’t violate our code of conduct… we just wanted to check in with you… have you thought through this, this, and this”
- (A P d): “…having you bounce it back and say, ‘have you thought about that’, would make me think, ‘Oh god, I’ve done it again, I’m really bad, I just can’t behave normally’”
- (R T d): “that’s so important that whatever we design doesn’t make people feel like they’re doing something wrong by expressing themselves in that way”
- (A P g): “when you talk about moderation and basically exclude certain facts, you know, there could be a backlash from your community saying they’ve been misrepresented, because you’ve excluded certain facts”
f) (P d): Link to Facebook page where unmoderated messages could be posted
- (** P** F d): “being directed to social media then loses the anonymity we’ve got on the platform, because if people then went on to post something about it on Facebook or on Twitter, then you’re identifiable”
g) What should we moderate for?
- (A A d): being identifiable through multiple posts
- (A d): Legal problems if organisations or companies are named
- (P d): Accidentally including incriminating information
- (R T d): “…probably the moderators would just say, ‘no, we’re going to accept it, we’re going to keep it for research purposes, but we’re not going to make it public’”
- (P i): sharing inappropriate (or socially awkward) information
- (A P g): people who know the individual being able to identify them
- (A P d): “supposing…my husband goes on and…works out that it must be me… there’s still implications there”
- (R T d): “there’s that whole dimension of other people that you might know personally, reading your stories.”
- (R T d): “I do think that probably the moderation process is almost certainly going to moderate out of the public one, but keep in for research if it’s consented, anything that talks about anyone else in a way that it could be identified”
- (A P d): “I think a moderator to look at things that don’t have consent in particular, and who probably should be someone autistic, and who could remove any of those things that could do damage”
h) What would help?
- (A d): “if you were concerned about the welfare of someone… a section if you need advice or if you need help”
- (R T d): “I think there’s almost no chance that we’ll allow people to comment on posts
- (A g): “That could give people a lot of anxiety”
5. Representing others
a) General
- (R T d): “we want to make the data set as broad as possible and make the process as inclusive as possible, and certainly not exclude anyone because they have challenges, and on the other hand we take consent and agency really seriously, and we think everyone should have a right to express themselves in a way that they want - so these are the two sides of the coin.”
b) Important to give everyone a voice
- (P d): “I am his voice, so I’m trying to represent young people like him, because the spectrum is large isn’t it?”
- (P d): “I feel quite strongly that we should be able to share a story, because…my son’s non-verbal, so his behaviour displays a lot of how he feels, and as his Mum I feel I understand him pretty well, and I would hate for people’s voices not to be heard because they can’t express it”
- (P i): “…even if [some autistic people] are eloquent with people they know well, they may want someone else to speak on their behalf on the platform, if they can’t do it themselves as well”
- (P i): “my son can’t consent, I know how hard he struggles to communicate…and I do feel that he would want to be included”
- (P d): “unless we do include people who are non-verbal or not or minimally verbal, they’re going to continue to be a neglected group.”
- (R T d): “…although it is not the easiest thing in the world to give consent to tell stories about other people, I think it’s really important that we try…to come up with a process for what that looks like, and we will brainstorm that, and we’ll iterate it a few times over”
c) Concerns and complexities
- (A d): Would be good to have some quiet times “…at my local library…they have mum and baby groups there, it’s kind of like the main community hub of my town area.
- (A A d): “so the idea of a noisy library is fantastic for me, I would love that… [important to let] people document the different types of experience that they need”
d) Distortion
- (A d): “…there could be people who maybe exaggerate or post stories about other people”
- (A d): “there’s always gonna be a personal bias in this because it’s coming from one perspective”
- (A P d): “…distortions are very important, because we want raw data…it needs to be given even to non-verbal people to deliver feedback through pictures, through other ways…the more opportunities [for] people to express them[selves] directly the better.
We want…as unbiased, authentic information as possible”
- (A P d): “…you have secondary source and that’s a distortion”
e) Consent
- (P d): “my son doesn’t talk, but would, can consent”
- (R T d): “…it’s not just whether someone can be identified, and there’s a legal requirement, but also an ethical question, is this the right thing to do?”
- (A P d): “…the problem is that when you tick that box was the consent informed, or did the person just say ‘yes’?”
f) Who could be trusted to represent somebody else?
- (A d): “depends how close they [the person doing the reporting] are…as long as it’s…a close parent, or guardian, or sibling, someone…the person themselves could trust.”
- (P d): “I’ve got lots of experiences from my work, I wouldn’t be comfortable sharing those, because they’re not my children, so I would only share the experience of my child”
- (P d): “…make it very careful in terms of who got to share whose experiences [e.g. parents] …not just general”
- (P d): “I wouldn’t feel comfortable sharing experiences even if I anonymised about someone else’s child”
- (A P R A d): “…there is now a group of older autistic adults, who you know, may not be in a position for their parents to be able to report for them”
- (A P d): someone with credentials, such as a Welfare Deputy Officer.
- (P d): “it’s political, you need to think about your audience and feedback…from people, backlashes, because the autistic community can get quite nasty, and apologies to anyone here but… there are particular people that think that parents do not have a right to say anything about their children, and they get really nasty on twitter about it”
- (A P R A d): “…in terms of people who might have concerns from the autistic community… show that we’ve taken steps to make sure that this is accessible as possible…there are limitations to the research approach – there are limitations to self-reporting, because we don’t understand ourselves very well either…and we can’t let perfection be the enemy to the good here”
h) Guidance for representing others
- (P d): “…take away the emotive from it…just record the factual side of it”
- (P d): “…cut out your own emotions and comments”
i) Suggestions for processes
- (A d): Guidelines: “a set kind of guidelines – nothing too specific in case they sort of need to express themselves in a certain way - ‘I’ve read or understood the following agreements to posting’”
- (R T d): [have a] “process whereby we would give some guidance to say - this is how you would best share someone’s experience without distorting it, this is how you represent someone well…”
- (P d): Authentication process: “if you’re a parent or a sibling or a close relative, you could even have another person countersign to say…they believe that to be the truth as well”
- (A d): Caveating submissions: “maybe they would have to state, ‘I am somebody’s mother, and this is how I feel, this is what I feel’…obviously if you can’t consent or offer information then it’s clear that it’s actually what you feel as much as you know that child”
- (A P R A d): Hybrid: “…give some information…supported by someone else to explain some of the context”
6. Data Management
a) General
- (R T d): FAIR principles for data use: findable, accessible, interoperable, and reusable
b) Agency
- (R T d): “we’ll almost certainly have three options, one that says you can use it and no-one else can, one that says if this…governance panel, thinks that it’s a reasonable application from a project that’s value aligned, then I’m opting in… the third option, that will be, “I want to be contacted on every individual basis’”
- (R T d): “[a] goal of the project is to allow people to understand a little bit more about the agency over their data”
c) Anonymity
- (R T d): “we imagine that…it will be anonymous and we’ll take out any identifying data”
- (A P d): “if someone records for someone [else] the way…around it is anonymisation… removing any personal identifiers”
- (R T d): “I think we’ll have to put quite a lot in place to trust that the individual person who was entering information has read the consent form, has checked through those boxes, I think there’s quite a lot of design around making that extremely clear”
- (A d): [example of a good terms of conditions]: “…a fake box where if you ticked it would then stay on the page for ten minutes and you would have to read it”
- (P i): “some autistic people can be a little naïve, and sort of overshare things”
- (P g): “…by sharing information, if prospective employers look at it, that could affect [autistic people’s] prospects”
- (A A g): “I think probably quite a lot of the community would be keen to repost”
- (A A d): “I slightly worry I suppose if it’s an individual profile that is posting a lot in a particular area, does that make it kind of identifiable?””
- (R T d): “…you would absolutely be allowed to have a profile that would include no photo, no name, just a made-up name associated with the account, you wouldn’t need to make any of that information public.”
- (A P d): “[if the question is too general], we’ll lose sight of the sensory aspects, it’s sensory, let’s keep it to sensory”
e) Communicating consent
- (R T d): “the really important thing… [about consent] is the clarity and the purpose…and communicating what it means in a way that is not a massive, massive block of text that’s really overwhelming”
- (A P d): “…as a data controller, you actually have to be very clear about your purpose in collecting the information”
- (P d): make sure the consent form is not too long
- (P d): put the consent form in fairly simple language
f) Changing consent
- (R T d): “I think [the ability to withdraw data] is a huge feature around…the ethics of the data management.”
g) Design
- (A P d): “…the whole of your platform should be designed to protect privacy”
- (A P d): “you need to collect just enough according to your purpose”
h) Which groups or organisations should learn from the data?
- (P d): shops
- (A P d): schools
- (A d): the NHS
- (A d): GP surgeries, waiting areas, hospitals
- (A P i): “for my son, in particular trying to go along to the doctors or a hospital appointment is an absolute nightmare”
- (A P R A g): “NHS England, in their 10 year plan, have named autism and other disabilities one of 4 clinical priorities…I think there is an opportunity here to actually do something that does make a difference in GP services and hospitals, because at the moment politically, they’re listening”
- (A P d): architects and designers
- (A P d): “…you need someone like that involved who can pull all the data together and get it to be used”
- (A, d): “possibly even autistic, or people who closely associate with autism, architects and designers…who has…interior insight”
- (A d): airports and train stations
- (R T d): libraries
7. Contribution channels
a) General
- (F d): there should be multiple input channels
- (R T d): “hopefully people who aren’t able to come to the focus groups, are not only heard by [researchers], but actually incorporated into a body of evidence and data that can be used by other people for the purposes of understanding a little better what the priorities are from the autistic community.”
- (A d): “if there’s a decision-making process. which you need a quick answer to, maybe a Twitter poll”
b) Focus Groups
- (A d): “…being part of this kind of focus group…gives people who may not usually have a voice a representation”
- (R T d): helpful to have thoughts written down
- (R T d): “…one of the interesting things about the focus groups is that you lead the discussion by the question that you ask and the direction that you take”
c) Personal Email
- (R T d): “we just can’t use it for research, but if you’re confused about any of the other ways of joining in, you can just email me, and I will help you with whatever you need help with.”
d) Mailbox
- (A P d): this would be the easiest way of sharing the project and getting people to join in
- (A d): how can we be sure what’s put in there is authentic
- (P g): it would be useful to have pictures for those who contribute visually
- (R T d): allows people to contribute who can’t be here in real life
- (R T d): it is always open, you can contribute at any time
- (R T d): “we’ve received, like quite a lot of feedback in the past month that it’s really confusing”
f) GitHub
- (R T d): “…you can also take part. via. GitHub, which is where you can just come and publicly and in an identifiable way you can put your priorities and your goals and the next steps of the project in there”
8. Ways of working
a) Diversity and Inclusion
- (A d): place where volunteered, “had a programme involv[ing] facilitations, and chats…we’d have a special guest who might be a psychologist, or a professor, or sometimes a doctor, and it would all be kind…topics to do with relevant issue,…finance, bullying, home issues, social issues…having an equivalent on the forum could…attract different groups.”
- (R T d): “if you do not have fair equity, diversity, and inclusion processes, then the people who drive the research and who choose what is going to be done with the money for the research is a very, very biased group”
- (R T g): Who might not be able to take part and possible solutions?
- (P d): people who are blind
- (A P d): assistive technology could help
- (R T d): make sure that the text that you use and where you lay things out on the page can be read by a screen reader.
(F, d): integrating more with virtual assistants like Alexa or Siri
- (P i): “…my mum couldn’t use the internet or whatever, but she used her Alexa, it was her best friend in the end”
- (P i): elderly people with autism, that aren’t as tech savvy
* (P d): leaflets in libraries and surgeries
- (R T d): “those are good ideas about how you would communicate the project, but not collect their experiences without them going online”
- (R T d): library sessions where people with trained mentors who could help them join in
- (A P i): they might be tech savvy, but they might not have access
- (A P g): “recent reports show that elderly people and children don’t use the internet not only because they don’t know how, but also because they are concerned there will be some scam”
- (A P d): people from lower socio-economic groups
- (R T d): technological upskilling could offer compensation for time/motive to join project
- (F d): people who are not Western and European
- (R T i): came up in previous focus groups that maybe the platform itself should be available in other languages
- (R T d): “I’m happy to be led by the community… [but] we’re already doing so much that starting to go into other languages is really tough”
(F, d): not just the language aspect, also the lived experience
- (R T d): “we can say that it’s a global platform, because it’s on the web, but if it’s not really accessible to every member of the globe, then we shouldn’t be calling it a global platform”
- (R T d): realistically, we will be using Autistica’s Discover Network, of around 5,000 people who are all UK based, initially
- (R T d): “don’t try to get lots of kudos by showing off to an international audience…if it’s really only accessible for English-speaking countries”
(P, A, d): “…for the lived experience, and also…from a research perspective, comparing different countries…would be a great project”
- (P d): People from different regions
- (P i): “…people living in London will have totally different experiences to people in Dorset, or in a farming district”
b) Online reimbursement
- (A P d): “…in some ways it might be slightly discriminatory to people who can’t work because …they’re finding it quite hard to live anyway”
- (R T d): “I think that it’s a really important problem, that we don’t pay people, and I don’t have good solutions for how to fix it”
- (R T g): “…given how much of a general problem it is for autistic people, that there is so much discrimination in the workplace…that there’s this huge institutional bias often… reimbursement is something to think super carefully about”
- (R T d): “I think it’s bad for research to only hear from the people who have time, and space, and…the finances to be able to take part.”
- (R T d): Open Source] is great if you are in a privileged position such that you can give away everything for free and you can give away your time for free, but the status quo is… problematic”
- (A g): “if it’s free people might sort of click through it rather than actually reading through the questions… if they know they’re not being paid for their time”
- (R T d): the reason why we don’t pay people is because it’s pretty difficult to do, and the main, the main difficulty is…related to this holding personal information…your bank account details are really important”
- (R T d): “I hope that there will be [user testing available over] Skype or some sort of video conferencing, and those will be paid”
- (F d): basic attention token as means of reimbursement
- (F d): “based on your attention on the page, it’ll be able to reward you with a particular crypto-currency - you put cryptocurrency for research [in a pot], and then people…draw from the pot as a reward for their attention to that page”
- (R T d): I’ve actually got a lot of dislike for cryptocurrency for a lot of different reasons
- (A d): Amazon vouchers
- (P d): “I…do quite a few different things, where they may monitor my phone or what I’m listening to on the radio and then they pay me in Amazon vouchers”
- (R T d): “I think it’s a really good point actually, because all you would need is an email address for the project itself we’re going to have an email address”
- (A P d): prize draw
(R T d): “I think that’s wildly unethical… I think it’s much more honest to say, look, we’re not going to pay you for your time to fill in this questionnaire, and this is how long it’s going to take, and you can make that decision”
- (A P d): choice of charities for people to donate to
- (A P d): “I think that’s still discriminatory…if you’re struggling to make ends meet”
- (A P d): “[Rationale that] you’re over-budget, and these people are so motivated to do it that they’ll do it anyway…that’s unethical”
- (R T g): “I do think there may be a group of people for whom that is motivating…I don’t think that solves the problem of exclusion of people who don’t have the financial means, but I do think it’s interesting”
- (R T d): offer a way for people to get in touch and say if they need to be reimbursed
- (A P d): “it’s sort of like an honesty book”
- (A P d): take the platform to a place such as the NHS where it would be accessible to people, so they don’t have to access it themselves through the internet
- (R T d): “I think it’s definitely wrong that you would pay people by the amount of time they spend on the page, and I don’t know how you would quantify an appropriate amount of time for somebody to have spent, I don’t know, years of their life thinking about this, vs…slinging down a couple of comments for five minutes”
c) Openness and Transparency
- (R T d): “…all research should be as open as possible, and as closed as necessary”
- (A g): “[make] sure the guidelines are short, sharp, get straight to the point, maybe language type…because some people on the spectrum may be confused by certain terminology such as metaphors and simile”
- (A A d): community trust: “I think from a community trust point of view, it’s really good to be transparent about why you want the data, but also why you don’t want the data”
- (R T d): “one of the things that a lot of people thought that we might do with the data was sell it, and that’s definitely not what we’re planning to do with the data, but I think it is useful to be really explicit and upfront about the reasons and motivations, and limits of what we would do”
- (A d): keeping people informed
- (A d): constant updates
- (A d): keeping people informed when there are collaborations with other organisations
- (R T d): “we definitely will do blog posts, videos, online discussions”
- (F d): cartoon and drawings perhaps explaining the concept of the back end and the application, “something that explains it in layman’s terms might be useful”
- (A P d): communicating project
- (R T g): large scale communication will be further down the line: “I think we need to be clearer about what the project is before we communicate it to lots and lots of people”
- (R T g): participants invited to share survey and sign people they know up to the mailing list, but not big public launch until pathways clearer
- (R T g): “there’s a lot of stuff that we need to action and make more accessible first”
- (R T g): no large social media or flier campaign until there is more clarification
- (R T d): promotes reproducibility: “…the key thing for me that really motivates me around reproducibility is that a) Reinhart and Rogoff did not intend to mislead, they didn’t mean to make a mistake, so they had no way of going back and checking…and, it’s very, very rare in academia at the moment and the way that we do scientific research, that anybody checks”
- (R T d): it can get be really hard to, “access…data and figure out what had gone wrong”
- (R T d): “most of the reasons why things aren’t reproducible are the human elements of them”
- (R T d): “why would somebody share their data, or share their code, that accompanied their research, because someone might find that they’d made a mistake, and it is definitely the case that it is the correct thing to do to have people find those mistakes”
- (R T d): “you should be able to get generalisable evidence, before you should be allowed to, for example, make government level or individual person-level decisions about them”
- (R T d): …I think it is unethical to collect really, really valuable datasets and not make them available for future use or potentially for reproducible aspects
- (R T d): having access to data is really important, and having access to the processes and to the things that have been done to that data or with that data are also really important
- (R T d): all research should be as open as possible, and as closed as necessary
- (F d): “I’m a big advocate for open source, I think it’s absolutely amazing for verifying the code base to make sure it’s secure”
- (F g): “you may have people who take the branch maliciously and adapt the project maliciously to gain information in a malicious way”
- (R T g): “I don’t know why people would…I think the risk is reasonably low”
- (A P d): “you wouldn’t have access to the source code, but because it’s open source, people can copy it”
- (R T d): “…the information needed to authenticate the database itself is private, so there’s a whole bunch of…private security stuff that happens in the background.”
- (A P d): “…as soon as it’s on the internet, anyone could copy any of it…not legally, but they could”
- (R T d): although you can’t stop people from copying public information from the website, you definitely can stop academic researchers from publishing it”
- (R T d): “I do a lot of work around open source development, and these are three principles that I try and work through – that every aspect of the project should be accessible and clear, it should be easy to understand; that the work should be easy to adapt, reproduce and spread, so it’s designed from the beginning to be shareable, and that is important to relate to the sort of responsibility you have for keeping personal data private, and that there is a participatory and inclusive aspect”