I was recently provided with a couple of intriguing research papers on autistic adults who were/are diagnosed later in life, and what their experiences were/are like.
Realizing a diagnosis of autism spectrum disorder as an adult by Laura Foran Lewis, College of Nursing and Health Sciences, University of Vermont, Burlington, Vermont, USA (in the International Journal of Mental Health Nursing (2016) doi: 10.1111/inm.12200)
Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults by Laura Foran Lewis University of VT, Vermont (in Archives of Psychiatric Nursing 30 (2016) 575–580)
I’ve been working my way through both papers over the past couple of weeks, giving them some thought and also wondering what sort of imagery I can draw out of them. There’s so, so much that comes to mind, when I think of my own later-in-life diagnosis. I finally got a formal assessment at age 51, after knowing (thanks to years of exhaustive research and soul-searching) that I was on the autism spectrum from the time I was 33 years old. And a whole lot comes to mind.
It’s tough to sort it all out.
One thing that jumped out at me was the methodology for analyzing the data. The researcher:
explored this lived experience using descriptive phenomenology.
Phenomenology is both a philosophy and a method. As a philosophy, phenomenology is the study of the structure of a conscious experience. Experiences can be understood by examining intentionality, or the memories and perceptions and emotions that surround the experience for the individual experiencing it (Husserl, 1954).
That caught my eye. I’ve been a huge fan of a phenomenological approach to… well, just about everything… for years, now. But this is the first I’d heard of it being applied to actual research. Very cool.
One of the main things that caught my attention was that after collecting personal accounts from the participants in the study,
The researcher used bracketing and reflective journaling throughout the research process to attempt to identify and remove biases from these experiences.
I find that so fascinating. A researcher who actually has a methodology for reducing personal bias. Very cool.
That’s the inspiration for the image at the top of this post — a swirl of data feeding in, then through a journal-centered process… then leading to meaning in the end.
I’ve had a full day — a full bunch of weeks, actually — so I’m a little short on energy right now. But it’s my plan to do more visualizations of my reactions to these two papers.