Autistic university students and their family relationships - reflections of an outsider PhD researcher

Have you ever been part of a group conversation where everyone else was talking about an event you hadn't been to? Or perhaps you've joined a heated group discussion late and had to play mental catch-up to figure out what the topic of debate was and which side you were on? 

These are examples of situations where someone is missing knowledge or information that others already know about, and these situations can highlight a divide between the insiders - those who have the shared knowledge - and the outsiders - those who don't.  

Since moving to the UK two years ago, this divide has been obvious to me in both my personal and professional life. As a qualitative researcher, I am encouraged to consider my positionality in relation to my research - this means thinking about how my various social identities intersect and what implications that may have for my research activities.

For me, the identity that has the largest and most obvious impact is that I am an immigrant whose UK-based education began at Master's degree level. I knew beforehand that this would result in me being much less familiar with the ins and outs of UK university life, and since university experiences would be a key area of my research, I set aside time to read up on the various aspects of UK education before planning any research studies.

Despite my efforts, there were still various things that I had to try to grasp and work around during the research period itself because they were unknown unknowns - things I didn't know I didn't know - and were therefore impossible for me to have read up on earlier.  

This starkly contrasted my prior experience of doing research in Singapore, which is where I was born, grew up, and did my undergraduate degree. This is not to say that my research experiences there were always a breeze; there were definitely many things I am grateful to have learned along the way from various groups of people.

But compared to the UK, Singapore is a small country, with correspondingly fewer universities and related systems to consider. Paired with my pre-existing knowledge of university life and the Singapore education system, it felt fairly straightforward to figure out what my knowledge gaps were, and how to fill them. In comparison, the learning curve during my UK research experience has felt more steep, with more unknown unknowns than known unknowns, which is perhaps not very surprising considering my status as an outsider researcher. 

What's helped

I had the benefit of research experience in the same topic area - autistic students' higher education experiences - which helped to identify some unknowns early on in the research process. For example, while doing my undergraduate dissertation in Singapore, I had considered various types of supports available to autistic higher education students (e.g. institution-based supports, supports from disability/autism organisations, etc.). 

As such, when I began planning for research in the UK, I knew I would need to read up on the support options available to university students here, and did so before commencing my research activities. This addressed a known unknown, but also uncovered a misconception I held in the process: One support option I read up on was specialist mentoring.

I had initially understood this to be provided by a university's student support service and assumed that the 'specialist' aspect meant that some university staff members 'specialised' in supporting autistic students, and that there were other staff members assigned to support students with other conditions, but that mentoring was just one aspect of their role in student support more broadly. It was only in talking to a participant of my Master's research project that I discovered that 'Specialist mentor' was a whole job description in itself, and that there were entire organisations (and people!) focused solely on this type of mentoring. 

It has thus been with the generosity and patience of the people around me, alongside my own continuing efforts, that I have been able to gradually identify unknowns and reduce my knowledge gaps. 

My research - past, present, and future

Conscious of my being an outsider researcher, I wanted to avoid simply parachuting myself into the research scene in the UK without first doing my due diligence - I wanted to be mindful of the autistic community and ensure that the work I embarked on aligned with their research interests and priorities. To that end, I began my PhD as many researchers do - by conducting a review of the literature to better understand the research that had already been done. I then identified gaps in the literature and conceived ideas to fill those gaps.  

However, instead of executing those ideas immediately, I first sought the input of a steering group that comprised autistic university students and graduates, family members of autistic university students, and specialist autism mentors. I presented my research ideas to the steering group, who voted on an idea to be prioritised. I then drafted a research proposal based on our discussions, and the steering group helped to refine the research questions, methodology, and so on. This proposal thus formed the basis of my current and upcoming research studies. 

My current research 

My current research study explores family relationships and support for autistic university students in the UK, through semi-structured interviews with autistic students and family members of autistic students. The study aims to understand and document autistic students' family dynamics and how they may change over students' journeys through university. Future research will seek to identify family-related factors that may impact various student outcomes during university. Collectively, this research aims to discern the role of family in autistic students' university experiences, which would in turn inform our understanding of how to best build collaborative partnerships between institutions, autistic students, and their families.

Top 3 takeaways

There are many things I've learned over the past 2 years as an outsider researcher (and more as a researcher in general). If I could condense them into three broad ideas, here's what they would be:

1.Always do your homework

Prepare as much as possible for each stage of the process. This can look like various things, for example: Learning about the university's ethics review process and timeline before starting on an application so you know what to expect and how long each stage will take. It's impossible to always be perfectly prepared for everything, but some preparation is better than none.

2. Get insider input 

Speaking to people who are familiar with whatever concept or aspect of the research that you are not familiar with can be really helpful, and may help to identify and even clarify some of your unknowns. Insider input is additionally important and increasingly common practice in some fields of research to ensure that the work being done is of value to the community it impacts. In the field of disability research, an oft mentioned phrase is 'Nothing about us without us', which advocates for the inclusion of disabled people in any research, practice, policy, etc. that impacts them.

3. Be open-minded and unassuming.

Sometimes when speaking to participants, I have felt uncertainty from them when they broach sensitive topics like mental health or gender identity. I suspect this is because they may have had negative experiences in relation to discussing these topics, and are hesitant to share their experiences and views with me. In qualitative research, building rapport with others is imperative, especially when you might discuss sensitive topics, and even more so for me as an outsider researcher. I have found that generally adopting an accepting stance and actively listening with empathy has helped to assure participants that my intention is not to question them, but to hear their stories. 

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