NB – While much of this article is a criticism, I also want to acknowledge that some of the surveys I encountered were well-considered and designed with more care toward autistic processes. I will highlight these surveys later in this series as models of good practice. Researchers are often limited to using or adapting existing measures that are not autism-specific. In recent years, there has been a groundswell of researchers, themselves autistic, who are directly addressing the need for different approaches in how autistic research is designed and conducted, and this should be applauded and supported. Some interesting research papers examining this can be found at Autism In Adulthood.
Between June 2020 – Feb 2021, I participated in over a dozen online surveys relating to adult autistic experience. A few were given to me by my psychologist as part of my formal diagnosis process; one was in response to an autism-focused training I attended; the majority were surveys for specific research projects being conducted by universities and autism research groups around Australia.
In late 2020, I was bedridden with a hernia, experiencing prolonged autistic burnout and emotional breakdown, and increasingly frustrated at not finding adequate mental health supports in order to integrate my Aspergers diagnosis. The research projects were focused on the very things I was living – mental health & suicidality, autistic burnout, financial (not-so-)well-being for autistics, among others – and the surveys provided a vehicle for me to process my thoughts, as well as contribute to autistic advocacy.
While I generally enjoy self-reflective questionnaires, I am easily frustrated by poor question design. With my background in teaching, I tend to expect clarity of information when it comes to gathering data. With my newfound understanding of Aspergan tendencies, my frustrations became more sharply defined; I expected that any survey designed for autistic people would be sensitive to autistic processing styles. For example:
- use precise language in questions
- communicate explicitly (say what you mean / don’t infer or rely on subtext)
- don’t ask open-ended questions
- ask thoughtful questions
- give clear examples
- don’t ask two things in the same question, and so on.
I was shocked to find pages of sloppy or ambiguous language, restrictive answer options (not allowing for important contextual variations), questions and statements based on non-autistic thinking and cultural assumptions (such as middle-class lifestyle) and worse, questions that still referenced outmoded models of autism.
I feel that if the research is genuinely aiming for a better understanding of lived autistic experience, I want to provide information as accurately and specifically as possible. It’s not because I’m an unnecessarily fussy pain-in-the-arse, but because I want to contribute meaningfully to research that might eventually influence change in attitudes. I understand the inevitable limitations of psychometrics and data analysis, but autistic experience is so highly-individualised that there really is no excuse for research that begins with generic presuppositions. I want the research to reflect autism’s complexity.
Wherever a survey provided an option to write my own response (rather than the usual multiple choice response), I took the opportunity to provide feedback. Many of the surveys were in an online format that prevented me from reading the next question until I had answered the preceding question – I prefer to get an overview of the whole questionnaire so I know what to expect and don’t repeat answers. In some cases I need to skip a question while I give it more thought and come back to it. Other times there may be two questions in different parts of the survey, that ask similar but slightly different things, so unless you have an overview you have to go back and adjust your answers (if the format allows).
Many of the surveys assumed that everyone could complete the questions within a generic timeframe. As self-advocacy, I made a point of explaining to the research teams that the process of writing is slow for me, not because of any impairment or deficit, but because I want to contribute meaningfully, and it takes longer for me to condense my many thoughts into words for the page. Where possible I requested they send me a Word doc version of the survey which I could read through and type my answers into, in my own time. It was heartening to see later surveys offering this option, as well as the option of a recorded response via video or audio. I hope this was the result of other autistics speaking up as well.
All the researchers I communicated with were especially warm, receptive, human and helpful; many were autistic themselves, and agreed with my frustrations. I always made it clear that I wasn’t blaming them for the survey problems, I was providing relevant feedback that could a) add to the pool of understanding autistic experience, and b) contribute to future research design. Often researchers are working with limited resources (including outsourced surveys), funding pressures and bureaucratic apathy. I just happen to have an autistically-pedantic view of language and communication, and would like to see autism represented accurately in research.
One thing that was consistent over most of the surveys was remuneration, ie I was paid to participate. All of the payments were in the form of a voucher to be spent at certain supermarket chains. The most was $100, but usually they were $25 – $40 – which I felt was a bit tokenistic, and sometimes even an insult to the time I was investing, but of course that was my choice. I always have ethical reservations when there is ‘corporate sponsorship’ involved, but I also understand how dire government funding can be. Personally, for what I feel I can contribute, I would much rather be employed somewhere as an ‘Autistic Consultant’, but I suspect that there are still many middle-class biases in that domain.
Anyway, it was a productive process, and in writing my responses I was able to find areas of clarity and insight that helped me integrate my experience in the absence of adequate mental health supports. It also provided me a new creative focus (writing) during many months of physical restriction (bed-ridden) and emotional exhaustion. Furthermore, it was this initial writing that seeded the idea of overhauling and refocusing my old website into its current form.
In this series of ‘Surveying The Terrain’ blogs, I’ll be publishing notes I made in my survey responses; I’ll include whatever survey questions or statements are relevant for context, but not the entire survey. My intention is really just to share my thoughts, autistic or otherwise. Perhaps they’ll resonate for you or stimulate other thought. I’m aware that in some cases information may repeat itself, and in some cases a survey has inspired me to interrogate a certain idea in more depth via a separate blog (eg How Do I Feel About Empathy?). In a couple of instances, the researchers also included a follow-up interview as a qualitative component, and provided options (phone call / video call). I found these opportunities to connect personally with the researchers especially pleasurable, it made the process more ‘human’.
On re-reading my notes from that period, I can see how my tone is disgruntled and contrary, but considering the state of prolonged stress I was in at the time, I had many reasons to be disgruntled, so I’ve left my tone intact.
I like lists, so here’s a list of the most relevant surveys / questionaires I participated in, which I may or may not include in future posts:
- The Cambridge Behaviour Scale / Empathy Quotient test
- The Adult Autism Spectrum Quotient (AQ) test
- Peer Support Group facilitator training feedback
- Priorities of Autistic People for Services & Supports
- Australian Longitudinal Study of Autism in Adulthood
- Autism Training for Counsellors, Social Workers and Allied Health Professionals
- Autism Well-Being and Suicide Prevention Study
- Autistic Burnout Study
- Lived Experience of 2E (Gifted) Autistic Adults
- Understanding Financial Well-Being of Autistic Adults
- Autism Well-Being and Suicide Prevention Study (follow-up suggestions)
No doubt it will take me awhile to cat-herd my thoughts into articles on each of these, but if we take it one step at a time, we’re bound to end up somewhere…