Josh is a La Trobe University student who recently finished (2019) a placement at OTARC. Josh helped us with a peer-reviewed journal submission and will be a co-author on this article. The article investigates predictors of quality of life, including sleep, mental health and well-being, in Australian autistic adolescents and adults from the Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Adults with Autism (ALSAA). Josh is autistic and has offered valuable insights and perspectives to our research team, which we share below.
Q: What is your Background and what made you interested in doing a student placement at OTARC and with SASLA in particular?
A: My degree is a Bachelor of Health Science (Medical Classification)/Bachelor of Health Information Management. That’s medical records, health data and health in general. I was interested in doing placement here because it is harder for me as I have special needs. My coordinator worked with me to try and find a placement that would best suit me. She knows that I like research, and I have interest in the area. OTARC had a study they were working on, and it’s obviously something I’m interested in; research and how research works.
Q: What is it like experiencing research for the first time from the researcher perspective?
A: I’ve been part of the research as a participant but being in the background, working out how to, so stuff is really interesting. What systems you use, seeing the data sets before you see the results. That’s the hardest thing is working with the data sets to work out what’s good and…what can’t be used. It’s a brand new experience and an experience I like.
Q: What is the difference between being a participant of the study and being involved in the final product?
A: Being a participant, you don’t see the final product…Being part of the final product…watching the data that you have collected and summarising and making the paper…and see what the data can be used for to help improve quality of life…on of the people involved.
Q: What advice you would give to someone who is looking to undertake a placement here?
A: You may not think it’d be good for you, but just do it. It’s worth it. You learn a lot and it’s good to be around people that are working in the industry that you might want to get into one day ’cause connections are always handy to have.
Q: How was it working in a team of specialists in autism research?
A: In autism its really good because, it’s really good to know that people are working on a cause (and) to treat a really bad and common thing in the world…There’s a gap in the research, there are still a lot of things that the government don’t know. There are a lot of things that people don’t know. Its just really handy to work out what will do it. And from my experience having it…is, I just know that people don’t understand and people just kind of throw you aside. And I mean you can’t do the job because you haven’t got the things, the social skills, that they want, but you might be perfect for the job. It would be good to be able to help people know what to do.
Q: What did you find the most enjoyable about doing research?
A: Learning a new thing, learning how to do things on a databases that we haven’t learned before and having to problem solve yourself and actually working out and seeing the data in way of numbers and then, giving a story by using basic statistic algorithms to work the data into the way you want to use it.
Q: What is the most challenging thing about being the researcher not the participant?
A: Not knowing how to do some stuff, you have to find, challenge yourself on how to do it. So, it’s time consuming to work out how to do something… But it’s also rewarding when you know how to do it. It just takes time, and looking at a screen all day, looking at numbers makes you really tired and wears you out…