This guest blog comes from the keyboard of Felicity Sedgewick, a PhD student at UCL Institute of Education, based at CRAE (Centre for Research in Autism and Education). I invited Felicity to write the post after supporting her recruitment of participants by sharing her study website on twitter. This sparked a debate which extends beyond her specific research topic to a broader issue in research – what we might call the “why aren’t you interested in my experiences?” problem. Enjoy!
My PhD (as a general definition) looks at the friendships, and particularly conflict within friendship, of girls and women on the spectrum. Friendships are crucial to our development and our overall life satisfaction, providing emotional support, guidance, and often much joy. They can also be something which people on the spectrum struggle with, especially during adolescence, and I’m seeking to examine what these challenges are and what contributes to them. There are three studies, each of which is looking at relationships in slightly different settings (e.g. mainstream, specialist education) or life-stages (teenage years, early-to-mid adulthood).
All three of my studies are still ongoing, which means I am still recruiting and still testing. I travel all over the country most weeks – I’m booked to go everywhere from Edinburgh to Bath over the summer holidays! On days I’m not testing, I’m working on data entry, beginning to write up the chapters of my thesis, keeping up recruitment, reviewing journal articles…all sorts of things which make up the life of an early career academic.
I recently put out a call for participants on Twitter. It garnered a lot of interest, and also a lot of debate, centred on my cut-off age of 40. Although Twitter is brilliant, there is no way to explain research decisions in 140 characters!
A lot of research, it was pointed out, stops at 40. Not just for women, but the fact that men are under-studied too doesn’t make it right (and no researcher I know would think so). There are lots of women who receive a diagnosis after the age of 40, and those women already miss out on so much. There are a whole range of issues potentially specifically affecting women over 40 (see a fascinating post by Cos Michael here), and, as we all know, autistic children grow up to be autistic adults, so it is important to know and understand their experiences too.
Nevertheless, I’m going to defend my decision to have a cut-off age, and that age being 40.
Originally, my cut-off age was going to be 25, which I’m sure would have caused just as much debate. That is because in the academic literature, 25 has widely been used as the upper limit of ‘early adulthood’, and I wanted to specifically look at how girls on the spectrum developed immediately after leaving high school.
I extended this to 40, partly based on my initial experiences of interviewing and recruiting (effectively in response to piloting the study), and partly for practical reasons – a lot of women who got in touch with me were over 25. I realised that the slightly longer term relationship development I was hearing about was just as interesting, as I was now talking to women who had partners, families, and a whole different set of relationships.
The reason I didn’t extend to the whole of adulthood was because I wanted to retain my focus on development after the school years and into the first few years of those adult relationships. Recognising that the average age for getting married is now 28, it made sense to look beyond that point, and I chose 40 as the cut-off to allow for people who enter into settled relationships later than this. By 40, most people have much more fixed relationships and sets of friends, meaning that they are no longer in the state of flux and development which I’m so interested in.
Some people on Twitter pointed out that by limiting my sample, I was missing out their experiences, which are different to those of younger women. Unfortunately, that difference is exactly why I need to define the age groups I work with. In terms of research, if the groups are too different, the comparisons drawn between them won’t show clearly show the effect autism has on relationship development. If my adult group had too large an age range, I would need to stratify into age several groups, reducing the number of participants in each and therefore the statistical power of any findings. I was anticipating having quite small sample sizes, and sampling across the whole age range would risk having a study which was not representative of women’s experiences at any life ‘stage’.
Potentially limiting the kind of conclusions I could draw would feel, personally, like a terrible waste of everyone’s time – mine, the funders, and particularly, the people who have generously given their time to volunteer to take part.
This is particularly true for a PhD, which is a single researcher trying to do everything on every front. This is all new to me. Most PhD students like me haven’t carried out a research project on this scale, or even been involved in one. A lot of us haven’t worked in academia before and are trying to take on a whole host of skills at once – becoming ‘academic citizens’ and carrying out high quality independent research. You have to make some concessions to practicality, and this includes drawing boundaries on your project. At the end of the three years, we will have written around 65,000 words on one very small topic and tried to place it within the wider research field. If you tried to answer every possible question within the research area, you’d answer them all very poorly (and never get your PhD!). Each individual project needs to be focussed on the depth of enquiry, which when the field is taken as a whole adds up to the breadth of interest.
I don’t deny that the fact that almost all current research chooses to stop at 40 is an issue – it definitely is. It is worth recognising that adult research is incredibly new – for a long time, autism was thought of as purely a (predominately male) childhood condition and could only be diagnosed in early childhood. This historical legacy is something that all researchers work within, and is part of why research with women and girls on the spectrum is also still in relatively early days. That is why people are trying to do research with these groups starting now, but it doesn’t exist from before.
Researchers aren’t perfect, and we don’t claim to be. Everyone is trying to improve knowledge and understanding in their area, and we have to make decisions about how to do that effectively and efficiently. If my PhD was purely about adulthood, I would not have a cut-off (adult relationships would be an excellent topic for postdoctoral research…). As it is, I need one for the clarity of my project – and so does everyone else.
The inclusion of different age groups, and gender identities, is something a lot of people know we need to work on. Just give us some time to get there – we can only do so much, so fast!