It's shaking, not flapping: on rebellious research
As I start diving into the neuroscience research for this project, I find myself dismissing some research for untraditional reasons. Not only because the research methods were faulty, the design poor, or the outcomes forced, but because they asked the wrong question to begin with. So much of the research, especially around autism spectrum, is completely out of touch with the reality of the experience itself. Every time I read a description of stimming that describes this motion as "flapping" I respond as though I have read a typo; it is shaking, not flapping, like Qi Gong or other forms of shaking meditation. Birds flap. People shake. (Would love to know if other #actuallyautistic people resonate with this! Comment below.)
An actual example of the research I am disregarding is anything that doubts whether people on the spectrum experience attachment, love, and connection. These are automatically out because I know that both people on the spectrum and people who love people on the spectrum know this is not true; it may be expressed differently, but the experience is beyond question.
At first, I worried this may be bad science on my part because it is subjective, personal, and in some ways intuitive. But then I thought about theory of mind. Theory of mind is the ability to take on another person's perspective; an absence of it is considered diagnostic for autism (another point that is far too black and white; if I weren't halfway decent at TOM I wouldn't be a good health coach now or future physician and counselor, which does not seem to be the case). Science that does not take into account the perspectives and experience of its human subjects is, quite frankly, bad science. Ironically, it also lacks theory of mind.
The DSM (diagnostic and statistical manual of mental disorders) writes about all mental illness from an entirely outside perspective. I suppose they consider this objective, but it is missing the fundamental piece that incorporates what it feels like to actually live with these conditions. Those experiences hold valuable information because they are relevant not only to the individual but to anyone who wants to better understand that individual (including counselors and other practitioners who provide care). Scientists should be curious, not scared of the difficulties posed by subjective information.
There is a movement on twitter tagged #askanautistic that pushes for research on autism spectrum to be done by and with people who are #actuallyautistic. This just makes sense. Not exclusively, of course, but inclusively; so much of the research is done on children and people who have a difficult time communicating traditionally that the science is missing the perspectives of the many autistic adults who can articulate their experience, and want research that is informed by that experience.
I am proposing a different model of meta-analysis, one that truly integrates qualitative and quantitative research. As I weed through the massive body of research on sensory processing sensitivity I am matching it with actual human experience - my own, people who fill out my survey, blog posts, comment threads, twitter feeds, autobiographies and memoirs - real voices. When the patterns align I suspect the research is onto something; when they do not, we should approach that disconnection with open minds and scientific curiosity. Perhaps the subjective experiences (read: humans) are missing part of their picture, a reality of imperfect self-awareness. Or, perhaps the question being posed by the research is wrong, looking from an irrelevant angle, and out of touch. The places where quantitive research and qualitative experiences are not aligned are where the best questions could be asked, and the places where they do are beautifully reinforcing of one another.
So Autistic Empaths will be an integrative meta-analysis of quantitative objective research and qualitative subjective experiences. My hope is that, good science or no, it is relevant for both perspectives.