Since I read Shades of Slander by Alanna Whitney, I’ve been thinking about ways to change perceptions of autism from that traditional (and very inaccurate) idea of a sliding scale of “functionality”. Of course, no representation will ever fully capture the beautiful diversity within the autistic neurotype, but even a crude representation would, at this stage, be more helpful than the sliding scale model. After a bit of deliberation between friends on Twitter (thank you everyone who let me throw ideas around with them), I think I’ve come to an idea.
I’d like to start with the final diagram in Alanna’s post. The circle separated into a number of sections representing different aspects of human functioning. I’d also like to start by saying that Alanna’s initial model is a great thing. The changes I’m proposing for my own project are by no means a criticism of her ideas, more an attempt to progress the ideas to a point where they’re least likely to be found problematic. I intend to achieve this through discussion, as I believe the broader my survey of opinion, the better my chances of finding an acceptable solution.
I found a couple of the terms a bit confusing, and some potentially problematic. It’s actually very hard to choose words to describe ability and disability that don’t have ableist connotations. I gave it my best shot.
Emotional Sensitivities – I interpreted this as potentially needing to be split into two sections. There’s sensitivity to our own emotions, and sensitivity or perception of the emotions of others. In my model, I split these into Emotional Sensitivity (how you respond to your own emotions), running from Emotional to Stoic, and Emotional Perception, running from Empathetic to Misunderstanding (I could do with better words to reflect a person’s ability to perceive the emotional states of others).
Physical Sensitivities – Looking up the definition of stalwart, I don’t think a word that invokes a sense of strength is an appropriate reflection of a lack of sensitivity to physical senses. I tried to pick a more neutral word to indicate a low sensitivity to physical input. I picked Impassive to reflect the low sensitivity experience, and kept Sensitive to reflect the high sensitivity experience.
Physical Conditions – I interpreted this as a scale of interoceptive sensitivity. How good a person is at recognising their internal condition. Tough and Tender have similar connotations of strength and weakness, that I wanted to avoid (yes, I know, I’m being pedantic). I chose Perceptive and Imperceptive for this.
Motor Skills – I’m quite happy with Static and Dynamic, with the understanding that either can be disabling. Very Static motor skill might indicate difficult in moving without assistance, whereas very Dynamic motor skill could be disabling in that lots of movement is happening but not necessarily within a person’s control. I would like, however, to consider renaming this category Motor Expression.
Ability – this was a hard one. Prolific and Expendable both buy into the ableist concept of a person’s worth as a function of their productivity; an idea that I strive to escape from in my work. I chose Able and Disabled, and intend to leave this category open to interpretation, a measure of how disabled one interprets one’s self to be, whether it be in physical, social, emotional or intellectual terms.
Neurological Conditions – I’m thinking about renaming this one, too, but I’m not sure to what. Activity style? Approach? Anyway, Impulsive and Compulsive work fine for this.
Communication – Articulate and Expressive (as per Alanna’s original model)
Filtering and Processing – I’m not sure if these should be two categories. For example, I’m highly perceptive (most of the time), but have a hard time filtering, which can leave me both perceptive of that tiny detail over there, but perplexed by the bigger picture.
So, what do I plan to do with these categories once I’ve nailed down terms that feel right? I want to popularise the idea of an autistic spectrum encompassing multiple categories of experience by creating a personalisable graphic. The plan is to provide the graphic in much the same way forum tickers for pregnancies and the like are provided. A signup form will provide you with a randomised username (so no personally identifiable data would be kept, keeping me on the right side of the data protection act), and allow you to set a password. You would then be able to log in to change details that would generate a graph, similar to the wheel pictured above, showing where you’ve ranked yourself on the above categories. I’m considering a questionnaire to aid in the process of scoring each category. The resulting image would then be saved to a permalink that can be accessed from a forum signature, blog, etc.
I hope to offer two charts, one representing “right now” and one showing an averaged result over all of the times the questionnaire has been filled in by that user. This is to encourage acceptance of the idea that autism is not only a spectrum of experience, but also that it is variable over time.
Given the time and spoons, I also have ideas about sensory wheels detailing high and low sensitivity to different senses. I’d also like to note, I’m making no promises about timescale or even if I can deliver this thing. Spoons are variable, and precious.