Occupational therapist interview
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Occupational therapist
interviewer: Okay. You’re welcome to put your bag down anywhere if you like. #00:00:13-3#
respondent: Yeah, I can just leave it here? #00:00:14-0#
interviewer: Yeah. #00:00:14-2#
respondent: Sweet. #00:00:14-9#
interviewer: Okay, so I’ll bring you in here. (entering dome space) This is where I’ve kind of ended up in this practice I guess. This is not like a finished work. #00:00:33-4#
respondent: Yeah. #00:00:34-3#
interviewer: It’s always a prototype and um, the way I think about this is it might become a pilot study for something a little bit more rigorous. #00:00:42-4#
respondent: Okay. #00:00:43-1#
interviewer: Yeah, but what I usually do is ask people if they’d like to interact with it before I explain how it works because I’m really interested to see like, how people interpret it without any direction. #00:00:54-7#
respondent: Okay. #00:00:55-4#
interviewer: So, go for it. #00:00:57-0#
respondent: Cool. Oh, this is cool. (laughing) #00:01:02-2#
respondent: (long pause while interacting with interface) Oh my gosh, I can imagine, kids would love this. Why is it going off? (laughing) (long pause while interacting with interface) It’s like a little bit turn-taking is it? It can be? #00:01:49-2#
interviewer: Um, well. Actually, I’ll explain how it’s programmed. The… my goal, I guess, is for the interaction to kind of be a facilitator of social communication. The child comes in here with their parent, which always ended up being their mother. Um, and so, I did a couple of other iterations, this is the third. It was the most successful because I think when you first come in and you press any button it’s like there’s an instant connection there equals colour all over the tent. #00:02:23-3#
respondent: Mm-hmm (affirmative). #00:02:23-3#
interviewer: Um, but the way the system’s programmed is kind of divided up into these segments, so the tent has 5 segments, which have lights on them and if you remain within the same segment, it eventually becomes mapped to that position. #00:02:40-1#
respondent: Okay. #00:02:40-8#
interviewer: But if you keep staying in the same segment for long enough the mapping is totally removed. (pressing buttons repeatedly) And I’ve called that sabotage. I’ve taken that from, like it’s an OT term. #00:02:54-2#
respondent: Mm-hmm (affirmative). #00:02:54-6#
interviewer: The idea is that once I establish control for the child, so it’s very clear they are generally quite happy to play with that understanding, but if I take it away what I found was almost always that the child would like ask for help or try and find patterns. Like they’d be a lot more explicit with the way that they behaved. #00:03:21-5#
respondent: Mm-hmm (affirmative). #00:03:22-2#
interviewer: The best example I had was an autistic boy who came in and immediately realised this was a scale and he walked around and around, and pressed sequentially button, button, button. #00:03:35-2#
respondent: Yeah. #00:03:35-1#
interviewer: But I’ve got, I was like observing from outside and I’ve got the sabotage switch, and so I stopped it from working and as soon as I did he sat down and he was like “oh, mum can you try that button over there” or something like that. #00:03:50-0#
respondent: Oh, okay. #00:03:50-1#
interviewer: Even when I turned the sabotage back off, so it was mapped properly he didn’t go back to that repetitive behaviour. He was trying to figure like out relationships between buttons. Um, and that kind of relationship focus is what I see mostly with adults, and I think you were doing that a little bit as well, so people usually like, “well if I try all the red buttons together…”, but kids they seem more like, um, I don’t know what you’d call it, but it’s just the sort of joy of mashing buttons. #00:04:28-2#
respondent: Yeah, yeah. #00:04:28-8#
interviewer: Because they’re getting some response they’re quite happy in that state. #00:04:31-2#
respondent: Mm-hmm (affirmative). #00:04:31-7#
interviewer: And so I found that the sabotage thing just gave me a bit more interesting behaviours. #00:04:38-0#
respondent: Yeah, kind of challenges them a bit more on a higher level almost – cognitively. #00:04:42-9#
interviewer: Yeah. #00:04:43-2#
respondent: It’s so cool. (laughing) #00:04:45-7#
interviewer: Yeah, I think, so, I brought the kids in. I’ve got 3 cameras in here, I record them and observe them from outside. #00:05:03-7#
respondent: Mm-hmm (affirmative). #00:05:04-4#
interviewer: And it was non-directed, so I let the child and parent in and said they can stay for as long as they want and they can leave whenever they want, which tended to be sort of 10 or 15 minutes in here, most kids. Um and then I went outside with them and we watched the video back together and just used that as kind of a prompt to think, to talk about not just how they felt in this space, but perhaps what, um, like a broader context for why they would do certain things. So, some kids like sound or don’t like sound, and that just helped us to kind of talk about those things afterwards. Um, it wasn’t very structured, but… yeah, it kinda helped me understand the behaviour a little bit more. #00:05:54-6#
respondent: Were they verbal children? #00:05:58-4#
interviewer: I only had 2 autistic kids. I had a lot of trouble finding participants, because what I found very late in the game was people like Aspect are now hesitant to help me out because this is not evidence-based approach um, and so I think there’s some link to the way that funding is given to them based on evidence-based approaches. #00:06:23-2#
respondent: Surely it’s research though, that’s how you find an evidence base. It’s how you build an evidence base. #00:06:29-9#
interviewer: Yeah, yeah. I don’t think I ever had the resources to get that level of data and number of participants through here, I mean I’m doing this on my own. It’s a very different approach for this faculty. #00:06:43-5#
respondent: Yeah. #00:06:44-1#
interviewer: People were always interested, but they had no idea how to help me out. And I approached a few people over in Psychology at the main campus and it was the same sort of thing. They liked the idea, but because it wasn’t structured in a way that I guess gave them value if they gave their time they couldn’t really commit to it. #00:07:06-8#
respondent: Mm-hmm (affirmative). #00:07:06-4#
interviewer: So in the end, the 2 autistic kids I got were quite high-functioning, didn’t have access to services, and so they were just interested in being part of it. #00:07:19-4#
respondent: Yeah. #00:07:20-0#
interviewer: I had 4 neurotypical kids through as well, same age group. #00:07:25-7#
respondent: Yep. (pause) Seems a pity doesn’t it. I can’t believe Aspect wasn’t more, um… #00:07:39-2#
interviewer: …Yeah, when I did my Honours work it was in retrospect a breeze. #00:07:44-9#
respondent: Yeah. #00:07:45-3#
interviewer: It went through really easy, but I have a feeling that there’s been big changes there. And it seems as though their research is kind of, I guess the way that they get funding and they’re a little bit protective of how they let other people in to that, which I guess is fair enough. #00:08:05-2#
respondent: Yeah, there’s always an element of that, I guess, in research. #00:08:08-8#
interviewer: Yeah. #00:08:09-5#
respondent: Just seems like a lot of potential, especially from an OT perspective. #00:08:15-0#
interviewer: Yeah. #00:08:15-2#
respondent: This sort of thing, and that’s the problem there is such little evidence around you know, everything to do with sensory processing, but you’ve got to start somewhere. #00:08:25-1#
interviewer: What I’ve found, OTs, teachers, people kind of, on the front line, I guess, are really open to it and really wanting to help me out, but it’s, I guess the more like cognitive science, psychology, the hard science people are like “no this is not really what we do”. #00:08:47-2#
respondent: Yeah, getting through some bureaucracy. #00:08:50-8#
interviewer: Yeah, yeah. All right, I’ll show you how I got here. So this is going to be a bit different with you… I mean I’ve interviewed designers and kind of talked about my process, which I guess makes a lot of sense to them, but you probably have a very different approach to practical work, so that’s really interesting. This is the Honours work that I did, so I did 3 devices over a year for the girl with autism. The first one was kind of designed to sort of I guess, see what sensory preferences she had. So this was an auditory one. This had vibration in it and this had a visual, this lit up, depending on how close your hand was to the surface. #00:09:47-6#
respondent: Cool. So you build these, this is your work? #00:09:52-1#
interviewer: Yeah, yeah. #00:09:52-4#
respondent: Okay, yeah. #00:09:52-7#
interviewer: So that’s my background, I guess, kind of, um, digital sensory technology. #00:10:01-7#
respondent: Yeah. #00:10:02-4#
interviewer: She was definitely attracted to the vibration, so I made this device, which had these vibrating joysticks, but different materials on each to separate whether she was really interested in the vibration or perhaps just the materiality of the surface. #00:10:19-2#
respondent: Mm-hmm (affirmative), okay. #00:10:20-4#
interviewer: And it seemed that it was pretty clear that vibration was what she was into. When she first used it and realised that she was able to control it she immediately looked to her mother and the OT I was working with said that was really nice… #00:10:36-0#
respondent: …Joint attention. #00:10:37-5#
interviewer: Joint attention, yeah, which is, I guess, where the early ideas for this came about. (referring to dome space) #00:10:42-8#
respondent: Mm-hmm (affirmative), yeah, yeah. #00:10:43-7#
interviewer: In the end, I created a change table for her, this was because her mum always had trouble changing her. She was very active. #00:10:53-7#
respondent: Mm-hmm (affirmative). #00:10:54-4#
interviewer: And we thought that vibration might settle her, but the trick with this was that it would only vibrate if you pressed each opposing corner at the same time, and it was too far apart for her to do on her own, so she had to ask her mum to help out. Wasn’t hugely successful, but I think it was an interesting process. #00:11:17-6#
respondent: Mmm. So did it settle her a little bit more or not really? #00:11:22-6#
interviewer: She was interested in it like a toy, I guess, rather than a calming… #00:11:27-0#
respondent: …Functional kind of… #00:11:28-7#
interviewer: … Yeah, yeah. (pause) So that was, I guess, what led me into the PhD and if I was talking about this with a designer I’d say this was my material studies, um, which became a small prototype and I thought through some ideas about how lighting can tell a story with sound as well and I made these headphones that have microphones on them, which give a really strange auditory sensation. So I was also thinking about how, if you had a different way of sensing the world, would that change the way that you interact. I guess they’re sort of speculative and an interesting way to think through some ideas. But I thought this is just way too complex for kids of that age group. #00:12:31-0#
respondent: Mm-hmm (affirmative). #00:12:31-9#
interviewer: So then I went into designing different interfaces. The tent thing was always what I was working with because I was hoping to work with Aspect and perhaps in their schools it’s designed to be mobile. #00:12:47-4#
respondent: Yeah. #00:12:47-6#
interviewer: Fit within certain heights of rooms, so that was kind of always the way the space was, but the surface of the interface has been through several developments. #00:13:01-5#
respondent: Yeah. #00:13:01-9#
interviewer: The first one was these blocks and there was a camera underneath, which basically could track the position of each, so this would trigger a purple light in that position, if you imagine looking down at the tent from the top. #00:13:16-6#
respondent: Mm-hmm (affirmative). #00:13:17-2#
interviewer: This would be a blue light or a yellow light, and so on. #00:13:19-9#
respondent: Yeah. #00:13:20-5#
interviewer: But, just way too abstract for kids I found, because there was no reference on the surface as to what you’re controlling. So I went into this peg and hole type game, which was more successful in the way that it mapped to that surface. So a red peg in that hole triggers a red light in that space. #00:13:42-9#
respondent: Yeah, okay. So and you, this was in the middle of what you’ve got there. #00:13:48-7#
interviewer: Yeah, so that’s removable, that top. #00:13:50-8#
respondent: Okay, yeah. That’s pretty cool. #00:13:54-3#
interviewer: But there was a few problems with this it was quite rushed and I found this rough surface was not great for especially autistic kids. #00:14:03-4#
respondent: Yeah. #00:14:03-6#
interviewer: And there was also an interesting thing, I have these lights underneath and the quality of that really bright LED a couple of the kids didn’t like it. There was one boy who couldn’t look directly at it, so he was still interacting, but he’d be like looking away. #00:14:21-0#
respondent: Yeah, okay. #00:14:21-9#
interviewer: And I didn’t think he was engaged at all until we did the little interview afterwards and he piped up, and he was like “yeah the yellow peg makes a yellow light”. #00:14:30-3#
respondent: Oh, so he knew, but it’s not like he was… #00:14:33-5#
interviewer: Yeah. #00:14:33-8#
respondent: …using his peripheral vision, maybe… #00:14:35-9#
interviewer: …I guess to filter out that light, yeah. #00:14:38-0#
respondent: …the intensity. #00:14:38-7#
interviewer: But this was definitely the most successful, I think, (referring to third interface) because of the instantaneous way that buttons trigger lights. #00:14:47-7#
respondent: Yeah. #00:14:48-0#
interviewer: Yeah, and then my, I get my data is really all from interviews. #00:14:54-3#
respondent: Okay. #00:14:55-5#
interviewer: So, one of these is from a teacher from an Aspect school, and another one is from a woman who has Asperger’s who’s been amazing the way that she can articulate some things is just really incredible. #00:15:13-6#
respondent: An adult with Asperger’s? #00:15:14-7#
interviewer: Yeah, yeah. I think she was diagnosed when she was about 40, which was really interesting. So like, she has totally learned to behave in a typical kind of way, but she can still speak about those experiences in an amazing way. #00:15:30-3#
respondent: What did she say about it? Which one is she… (pointing at interview transcripts) #00:15:31-8#
interviewer: …Ahh, this one. I’ve interviewed her a couple of times. #00:15:34-7#
respondent: Yeah. #00:15:35-0#
interviewer: This was the last interface and she was really attracted to the musicality of it. #00:15:41-8#
respondent: Yeah. #00:15:41-9#
interviewer: She apparently has perfect pitch and she tells me that that’s kind of common in autism. #00:15:46-5#
respondent: Yeah, yeah. I’ve definitely heard it a few times. #00:15:48-8#
interviewer: Yeah, so she was yeah, attracted immediately to playing music rather than the lights. #00:15:55-4#
respondent: Yeah. #00:15:55-8#
interviewer: She felt like the lights supported it, but it was all about the sound for her. #00:15:59-8#
respondent: Yeah, because our research is with adults with autism and um, we’ve got about 70 so far from around Australia, but most of them are diagnosed in the last 3 to 4 years, so probably similar to this woman. #00:16:19-2#
interviewer: Yeah. #00:16:19-8#
respondent: Yeah. So the next, what’s the next step? Obviously your PhD is this whole design process and interview and everything. What’s the next step with this? #00:16:35-5#
interviewer: Ahh, yeah, depends a lot on the kind of interest I get from this work. So, we’ve got a few people here who actually work with autism in different ways. #00:16:50-5#
respondent: Mm-hmm (affirmative). #00:16:51-0#
interviewer: There’s a Masters student who’s interested in how the design of eating utensils might change the way that a child is… Um, I get the impression that they sometimes find it difficult to eat certain foods. #00:17:10-6#
respondent: Yeah. #00:17:11-2#
interviewer: I don’t know whether it’s a texture or what’s going on, but, so she’s interested in the design of those to get around that problem. There’s another woman who is looking at the design of classrooms and how that effects learning outcomes. A Postdoc here is working with robots and the way that a robot can teach facial expressions. #00:17:34-4#
respondent: Mm-hmm (affirmative). #00:17:35-2#
interviewer: So there’s a few of us and we’re kind of looking at I guess whether there’s any interest in funding, and if there is I might stick around and do a postdoc, sort of continue on, but I’d really like to work with psychologists or someone that can add a bit of that rigour to the process. #00:17:57-5#
respondent: Yeah, you’ll definitely have to keep in contact with us because… Have you heard of the Autism CRC? #00:18:04-4#
interviewer: Only, I think, just by looking for you online. #00:18:08-3#
respondent: Yeah, yeah, so it’s like 8 years of funding national cooperative research centre. It’s $31 million over 8 years and there’s sites all over Australia. #00:18:19-9#
interviewer: Mm-hmm (affirmative). #00:18:20-4#
respondent: And we have one in Sydney and it’s at UNSW in Randwick, so it’s myself. I have a PhD student and we are working with adults, but there’s also another postdoc that’s working with children and she’s got 2 PhD students working with children as well. They’re doing kind of MRI, some brain imaging stuff. Yeah, so, I just, it’s all UNSW so we can definitely help you out a little bit. I think it’s pretty exciting. It seems like, I guess there’s a few ways you could go about it, you could definitely go down the whole early intervention learning those skills and actually kind of running, I don’t know, some sort of therapy sessions in there compared to regular therapy sessions that children get and see what the differences are when you’re learning, you know, if the goal is to learn social communication or even joint attention, those really low-level skills. #00:19:24-0#
interviewer: Yeah. #00:19:24-4#
respondent: Or, you could, or it could definitely be used for like, modulation, so almost calming because that sort of space is really, it would be a little bit harder to put that into a research project. #00:19:42-6#
interviewer: I had a diversional therapist come in and she said that she could imagine using the space in a group therapy context… #00:19:53-0#
respondent: Yeah. #00:19:53-0#
interviewer: It’s not so much the interaction, but just as like a space that was calming. #00:19:57-3#
respondent: Mm-hmm (affirmative), mm-hmm (affirmative). And see how that affects the kids’ abilities to attend. #00:20:02-9#
interviewer: Yeah. #00:20:03-4#
respondent: Um, and then even, you know, older adults with more severe intellectual disabilities and you could just really, you know the cause and effect stuff, so those people who can’t communicate, well we can’t work out a way to communicate with them, you know, that’s the really severe end of the autism spectrum. #00:20:26-1#
interviewer: Yeah. #00:20:26-5#
respondent: And i’m thinking about some of the adults I’ve met who do have kind of moderate intellectual disability, just their ability to kind of attend to a task or um, kind of concentrate for a longer period, you know some environment like that could be really helpful. #00:20:46-5#
interviewer: Yeah. #00:20:46-9#
respondent: Just having that control over the environment. I don’t know there’s a lot, there’s a lot… #00:20:52-9#
interviewer: Yeah, I think there’s definitely a lot of potential to explore it. #00:20:56-8#
respondent: It’s just about getting some funding I guess. #00:20:59-3#
interviewer: That’s it, yeah. #00:21:00-4#
respondent: That’s always the go to. #00:21:02-9#
interviewer: Yeah. #00:21:03-2#
respondent: Have you, what about Giant Steps, that school, have you been in contact with them at all? #00:21:09-3#
interviewer: I have heard of them. I can’t remember if I got in touch with them. #00:21:13-0#
respondent: Yeah. #00:21:13-9#
interviewer: When I start I got in touch with a lot of people. Didn’t get a lot of feedback. #00:21:17-4#
respondent: No, it’s hard, it’s so hard. #00:21:19-7#
interviewer: Yeah. #00:21:19-8#
respondent: I’m doing the same things in the adult space, just calling all these people trying to find participants for our study. It’s yeah, it’s definitely an ongoing kind of task. #00:21:31-6#
interviewer: Yeah. Um, all right, (laughing) this is going to be interesting, the tape on the floor is to kind of step through the stages of my process, so it’s like I guess early concept, material studies, prototyping, iterative design, and my data. #00:21:53-7#
respondent: Yeah. #00:21:53-8#
interviewer: And that’s kind of a back and forth process. Um, and what I had done is got a piece of chalk, which I think I left in the other room and draw on the floor the other person’s process and whether um, there’s any areas which overlap in any way. That’s like another way that I map out some data really. So, yours is, as I imagine, very different from mine. #00:22:21-8#
respondent: Yeah. #00:22:22-2#
interviewer: Can you see any points that sort of match up? #00:22:26-5#
respondent: So, um… I don’t really understand. What do you mean? #00:22:30-5#
interviewer: So, if… where do your original ideas come from? I mean, you have a hypothesis, I imagine. #00:22:41-2#
respondent: Mm-hmm (affirmative). #00:22:42-3#
interviewer: Which is quite different to me. I don’t really start with a hypothesis so much. That comes through the studies. #00:22:51-3#
respondent: Mm-hmm (affirmative). #00:22:51-8#
interviewer: And I sort of see what emerges out of that, but you would come to a study with quite a specific question in mind. #00:22:59-7#
respondent: Mm-hmm (affirmative). #00:23:00-4#
interviewer: And you’d test that iteratively I guess. Would you make changes in a study? #00:23:07-5#
respondent: Definitely, yeah, yeah, yeah. I mean, often it would be based on the literature, and even to some extent you know, something like this qualitative data. #00:23:20-4#
interviewer: Mm-hmm (affirmative). #00:23:20-7#
respondent: And then, yeah, you kind of design your research question, your hypotheses, but that can change, especially I mean, in more qualitative kind of space it can change. You definitely can adjust the… Yeah, it depends what you’re doing. It depends what the research is, I guess. #00:23:41-9#
interviewer: Is there any examples of projects that you have where there’s very… quite a material artefact that’s involved? #00:23:53-3#
respondent: Like an intervention kind of thing? #00:23:59-4#
interviewer: Yeah, yeah. #00:23:59-9#
respondent: Um, not really in the work I’ve been involved in. #00:24:03-2#
interviewer: Okay. #00:24:03-4#
respondent: Um, we have, all our research, especially at the moment, is questionnaire based. #00:24:10-7#
interviewer: Mm-hmm (affirmative). #00:24:11-1#
respondent: I mean, we do alter the questionnaire to a certain extent and we’ve been working with adults with autism to make it appropriate for them, make sure there’s no ambiguous language and all that sort of thing. And it’s all online as well, and that’s a bit of a nightmare sometimes, so we definitely have had to adjust that as issues arise. #00:24:33-6#
interviewer: And once you get the feedback from that questionnaire, where do you go from there? Do you refocus it based on the kind of data you get from that? #00:24:49-2#
respondent: Yeah, so it’s pretty much the whole aim of the study is to kind of develop an understanding, or a profile, of physical and mental health, productivity, well being. We have a big sensory processing measure in there, so we are going to, once we get all the data in we’ve got a control comparison group of neurotypical adults. Once we get it, pretty much we write it all, we analyse it, write it all up, see where the differences are, see where the similarities are, see where the gaps are in services, see what the differences are in mental and physical health, and what that then means for services and policies, and funding bodies. And then from there we kind of do a little bit of advocacy and work with government bodies to try and get that message across about what’s happening and why it’s important and why there needs to be funding in certain areas to try different things. #00:25:53-1#
interviewer: Yup. #00:25:53-6#
respondent: So that’s pretty much where our research goes to. It’s just, it’s at a really low level developing and understanding of what’s happening, especially with adults because there’s so little done and so little done, there’s so little understanding. #00:26:08-0#
interviewer: Yeah. #00:26:08-2#
respondent: Yeah, I think… #00:26:12-4#
interviewer: Why do you think that is? Obviously, it seems like to be a focus on early intervention in kids. #00:26:18-0#
respondent: Well the diagnosis was only identified in the ’40s and then only became kind of mainstream, more well known, in the ’60s. #00:26:26-4#
interviewer: Yeah. #00:26:27-1#
respondent: So that means even if those people were diagnosed, were kinda born in the ’60s may have got a diagnosis. It wasn’t really that well known, it wasn’t really that mainstream. Um, those people are only going to be 50 something now. So the, you know, focus has been on children because the majority of people with autism have been children up until now. And as the awareness kinda grows there’s lots of adults getting diagnoses in adulthood. So the number is just you know, increasing. I’ve had a lot of conversation with adults who go, oh my gosh, like, you know, I’ve had all these struggles my whole life and then I learned about autism, I went to a psychiatrist, I got a diagnosis and it’s like everything makes sense. #00:27:20-0#
interviewer: Yeah. #00:27:21-5#
respondent: I look back my whole life, my whole schooling, everything can be attributed to some parts of my autism. #00:27:28-4#
interviewer: Yeah. #00:27:29-5#
respondent: Yeah, so I think that’s kind of why. There’s just a huge, in the last 5 years, or even less than that, there’s been more of a push to start understand adulthood. #00:27:44-4#
interviewer: Mm-hmm (affirmative). #00:27:44-9#
respondent: And there’s a really interesting movement. Some adults have a really strong self-advocacy movement, and some adults hold the kind of identity of autism as a core part of their person. #00:27:59-4#
interviewer: Yeah. #00:27:59-6#
respondent: And then you get into all these issues with language. #00:28:03-2#
interviewer: We had a really interesting debate, actually, with a group of people. One of them is this woman with Asperger’s, she’s a self-advocate. #00:28:10-2#
respondent: Yeah. #00:28:10-6#
interviewer: So it was like identity-first versus person-first. #00:28:13-0#
respondent: Yes. #00:28:13-3#
interviewer: And another person in the group is from special education at main campus and she was very person-first. #00:28:20-4#
respondent: Yes. #00:28:20-8#
interviewer: It was really interesting. #00:28:22-9#
respondent: Yeah, it’s a really big and ongoing debate at the moment. And adult, most adults on the spectrum, that I know, prefer identity first and, therefore, their argument is most of us prefer identity first, so it should be identity first because we’re the one experiencing it. And I do agree with that, but I also think as well some adults who have severe co-morbid intellectual disability don’t necessarily have a voice and um, may not want their disability to be a part of their identity because it’s so severe. But yeah, it’s hard to balance it. #00:29:01-2#
interviewer: Yeah, I’ve actually started using identity-first language in my writing. #00:29:05-2#
respondent: You have? Yeah. #00:29:06-2#
interviewer: I guess it’s easier for me having a design background, I’ve got the freedom to make that decision perhaps more than someone from a science background. #00:29:14-8#
respondent: Yeah. #00:29:15-3#
interviewer: But um, I mean just from speaking to this woman, she doesn’t think about… She’s very much neurodiversity-centric, I guess. #00:29:26-8#
respondent: Yeah. #00:29:27-7#
interviewer: And that’s, I feel like I’m not in a position to speak for them. #00:29:32-9#
respondent: No. #00:29:33-4#
interviewer: If that’s what she wants, then that’s what I’m going to do. #00:29:36-0#
respondent: I definitely think that’s a good thing. You know. I do lean towards identity-first. I swap back and forth depending on who I’m talking to. I’ve had some conversations with you know, parents of adults who have autism, really severe intellectual disability. They’ve cared for them for 55 years. You know, they’re 75 themselves and um, they don’t want to hear about their autistic son or daughter because you know, that’s their daughter that is a person first and foremost. #00:30:12-2#
interviewer: Yeah, yeah, yeah. #00:30:12-0#
respondent: Because I mean, in those cases, I guess the intellectual disability and the autism is really affecting their life in a negative way. So, yeah, but, I swap between. And I think most of the feedback I’ve heard as well is if you at least acknowledge that you are aware of the debate and you know, you try and be respectful for everyone and use the appropriate language in appropriate context, but still it’s hard. (laughing) Yeah. And did the, I wonder, did she have any ideas about how to go forward, like how she would’ve like to see this move forward? #00:31:04-0#
interviewer: Um… She’s actually a PhD here. #00:31:08-5#
respondent: Okay. #00:31:09-1#
interviewer: And her work is about trying to create spaces that, um, how does she frame it, it’s not about a common language, but create spaces that help neurotypical people appreciate what, like how a person with autism might negotiate mostly sensory kinda stuff. #00:31:37-5#
respondent: Yeah. #00:31:36-8#
interviewer: So, she will create a room that’s quite, full of lots of almost found objects. It’s pretty interesting. And it’s quite hard to describe actually. So she might have streamers, I guess it’s a little bit sensory room-esque, but it’s not technology focused. #00:32:01-6#
respondent: Yeah, okay. #00:32:02-7#
interviewer: So she is really interested in this space as a contained and calming environment, more so than the interaction. #00:32:13-3#
respondent: Yeah. #00:32:17-8#
interviewer: And that’s I think that’s probably been the most successful part of this whole thing is just that as an environment there’s something about it that’s quite welcoming and calming, and I think I’ve managed to find a nice spot between safe and contained, but not claustrophobic. #00:32:36-7#
respondent: Yeah, definitely. Yeah, it’s cause it’s definitely, it’s kind of like I don’t know airy, but still yeah, like you say safe. I’ve seen a lot of behaviours of kids try and just escape everything. you know, they crawl under tables or try and pull things down on top of them, but going in there would… #00:33:01-1#
interviewer: I mean, I didn’t have any low-functioning kids in there, so I guess it’s hard to make a call on that. #00:33:07-8#
respondent: Yeah. #00:33:09-6#
interviewer: But, even the water rain, bird sounds, I think helped to make it feel like it was its own space and wasn’t just in like a concrete box, especially when the kids came in the first time, I guess, there was a chance that it would’ve been quite alienating and strange, but I didn’t have that problem at all. So it was good. #00:33:34-5#
respondent: Can you move it quite easily or not? #00:33:38-5#
interviewer: Yeah, it packs up pretty much like a camping tent. #00:33:42-6#
respondent: Okay. #00:33:43-1#
interviewer: Um, the complex part is the way that I’ve set up the lighting. #00:33:48-2#
respondent: Yeah, okay. #00:33:49-3#
interviewer: If I was to develop this further I had in mind to make the pieces kind of modular and the lighting and sound would sort of fit within those modules. #00:34:01-1#
respondent: Okay, yeah. #00:34:01-7#
interviewer: It’s a safety issue with all the cabling and stuff around, like if a kid jumps through and runs around. #00:34:07-3#
respondent: Which is likely. #00:34:09-7#
interviewer: Yeah. #00:34:10-1#
respondent: If you start getting to… Yeah. #00:34:14-2#
interviewer: Um, so that’s probably where I’d go with it if I revisited it. With my background in DIY and maker technology I’m really big on it like being accessible in a cost sense as well. #00:34:36-8#
respondent: Yeah. #00:34:37-0#
interviewer: Um, so everything should be available off the shelf and people can kind of set it up in their homes if they would like. #00:34:45-2#
respondent: Yeah, see because is like a play on like a… there is some literature on you know, sensory rooms. I worked in a respite facility, in WA, for kids with disabilities, all sorts of disabilities, and we had this one room set up and it was just a sensory room. We’d spend an hour in there with the kids after lunch and it would be like, you know, really dark and some bits over there would have cool lighting like this, down there is like a… There used to be this mat on the ground, which was like a vibrating mat, and kids would just lie on it and vibrate. Over there there’s like a wall that they can press and different things light up. And I know there’s some research about that and the influences that that can have on some children. It could be you know, somewhat evidence based. #00:35:51-0#
interviewer: Yeah. What I read about it was very, um… what’s the word I’m looking for… Some people were very anti that approach. There’s some people at Macquarie Uni who were like “no, there’s no evidence for it- #00:36:18-2#
respondent: Yeah. #00:36:19-1#
interviewer: -it’s all hearsay and anecdotal.” And then there’s whole papers written about how it was successful in you know, improving learning outcomes. #00:36:30-6#
respondent: Mmm. It’s just still at that kind of base level. #00:36:34-4#
interviewer: I’m just going to… (talking to someone outside the space) I’m just doing an interview. Can you give me 5 minutes? #00:36:40-7#
outside: Sure. #00:36:40-9#
interviewer: Thanks. #00:36:41-6#
respondent: Um, yeah, it’s interesting, but in the new DSM V criteria for autism they’ve got, they’ve actually listed sensory processing abnormalities, which changes things. At least it’s slowly getting acknowledged as a, by the high science people as a difference, even though it’s so hard to test. #00:37:05-3#
interviewer: Yeah. #00:37:05-3#
respondent: So I think that the ways to treat it, and you know, the fact that all the people in the front line and the people with autism themselves you know, talk about the usefulness of this sort of thing. #00:37:18-8#
interviewer: Yeah. #00:37:18-9#
respondent: But there definitely are some people in the other school of thought, as in most things. #00:37:27-6#
interviewer: Yeah. #00:37:29-4#
respondent: Yeah. I think it’s amazing. I want to sit in there all day. (laughing) #00:37:34-1#
interviewer: (laughing) Yeah, I turned up to Uni one day I had to do some studies, and I had a terrible migraine, and ended up just like curling up in the tent for a couple of hours and then I was all better. It was great. #00:37:46-0#
respondent: (laughing) There you go. Treats migraines. Oh, that’s perfect. Yeah. So, you’re opening it up… Are you sending it around to autism organisations to say they can come in? #00:38:03-7#
interviewer: No, I didn’t do that so much, I just opened it up like a standard exhibition here. #00:38:08-3#
respondent: Oh, okay, okay, so it’s more over the design elements of it than the… #00:38:12-3#
interviewer: Yeah, yeah. #00:38:12-4#
respondent: User kind of elements. #00:38:15-1#
interviewer: Yeah, all the other interviews I’ve done have been with design practitioners, so we talk a lot about that sort of process, but it’s great to get your perspective on it as well. #00:38:27-2#
respondent: Yeah, I think it’s awesome. I mean, like I said, I’ve got some other people. Are you still looking for people to come in? #00:38:33-1#
interviewer: Yeah, if anyone’s available. I’m only going to be set up until probably Tuesday or Wednesday next week. #00:38:38-7#
respondent: Okay. Yeah, I’ll check with the girls. Um, yeah, as I said, there’s 3 PhDs and one other postdoc, and if it’s just a free shuttle to get here I’m sure they’d be happy to come. #00:38:51-2#
interviewer: Yeah, that’d be great. #00:38:52-1#
respondent: Just out of interest more out of anything. #00:38:54-7#
interviewer: Yeah, yeah. Um, and we’ve got the Autism Research Group, we call it. They might be interested in what you’re doing as well. #00:39:06-7#
respondent: Yeah, awesome. #00:39:08-7#
interviewer: I don’t know if you want to meet up some time. #00:39:10-2#
respondent: Definitely. #00:39:11-0#
interviewer: We can bring everyone over. #00:39:11-7#
respondent: Mmm, that would be a really good idea. #00:39:13-7#
interviewer: Yeah. #00:39:14-2#
respondent: Yeah, we’re definitely keen. We’re starting to try and find all the autism people in UNSW, or even in Sydney, because all the other states have kind of these big hubs of research centres. #00:39:30-0#
interviewer: Okay. #00:39:30-8#
respondent: In Melbourne there’s OTARC, which is the Olgar Tennison Autism Research Centre, in WA there’s one at Curtin, like there’s all these big hubs in all the other states, but in Sydney there just doesn’t seem to be. #00:39:44-9#
interviewer: Yeah. #00:39:45-4#
respondent: I think because it’s so big, as well, Sydney. Everyone is spread out quite a lot, but um we’ve connected with some people in Psychology who are doing autism research recently, but we definitely would be interested in connecting with you guys and seeing what’s happening. #00:39:59-5#
interviewer: Yeah, that’d be great. #00:40:00-5#
respondent: And most of the other people are based here on this campus? #00:40:05-2#
interviewer: Except for the professor from special education, yeah, everyone is here. They’ve all got different practices. One’s got interior design, another actually comes from ABA Psychology, but she’s kinda heading towards design in her Masters now. #00:40:23-6#
respondent: Yeah. #00:40:24-3#
interviewer: Yeah, an artist, roboticist. #00:40:30-0#
respondent: A what, sorry? #00:40:31-4#
interviewer: Ahh, roboticist. #00:40:32-6#
respondent: That’s amazing. Yeah, that’s so cool. #00:40:37-0#
interviewer: Yeah, his work’s really interesting actually. #00:40:38-3#
respondent: Mm-hmm (affirmative).Cause there is like, and through the Autism CRC there are pockets of funding that come up. #00:40:45-9#
interviewer: Mm-hmm (affirmative). #00:40:46-4#
respondent: Like this year there was a small, $50,000 grant come up and people could just apply to it, as long as they were linked in with someone in the Autism CRC. You know, you put the application in together, or whatever, yeah, so those kind of came up last year. But I’m not sure when the next load will come up or anything like that. And how, cause I’m in the, there’s 3 programs in the Autism CRC. Program 1 is like children, even pre-natal genetics, that sort of stuff. #00:41:22-5#
interviewer: Okay. #00:41:23-0#
respondent: Program 2 is all school aged, and program 3 is adults. #00:41:28-2#
interviewer: Yeah. #00:41:28-7#
respondent: So I’m stuck in program 3, but the other postdoc and PhDs are program 1, so that would be more applicable. I’m just thinking about the funding opportunities through there. #00:41:41-7#
interviewer: Yeah. That’s really interesting. So we’ll definitely keep in touch. #00:41:48-6#
respondent: Yeah, this is exciting stuff as well. It’s much more exciting than just… You know, you get a bit sick of your own research sometimes. (laughing) #00:41:57-1#
interviewer: Yeah. Well, I laid this out for opening on Tuesday night and people who hadn’t seen it before were really excited. I’ve just, I’ve been surrounded by it for so long. #00:42:07-8#
respondent: Yeah, okay, so you’re like… #00:42:09-6#
interviewer: So I’m like, yeah. It’s cool, but… It was cool 2 years ago. (laughing) #00:42:12-7#
respondent: (laughing) Yeah. No, it’s awesome. #00:42:16-0#
interviewer: Thanks. #00:42:17-3#
respondent: Yeah. #00:42:18-2#
interviewer: Alright. I might switch off this now because I’ve got to transcribe everything. #00:42:20-9#
respondent: Yeah, don’t talk for too- #00:42:23-3#