Written by Melanie Heyworth
Maybe you think of all humanity as existing on that line. Maybe you imagine that somewhere along that line there is a point at which a person magically crosses onto the “Autistic” side. Maybe you envisage that Autism exists all along that line, that we’re all “a little bit Autistic”, but that at some point, a person becomes so Autistic, they become diagnosably so.
Maybe you don’t associate non-autistics with that line at all, but rather see one end occupied by the Sheldon Coopers of the Autism world, and the opposite end by Rain Men.
Very simply, that linear spectrum – however you conceive it – does not exist. In fact, we need to scrap that reductive thinking and start all over again.
Autistic people have been proposing different ways to visualise the Autism spectrum for many years.
Rebecca Burgess’s brilliant comic, “Understanding the Spectrum”, illustrates the spectrum as a colour wheel, with many graded colour segments, each distinguishing between language, motor skills, perception, executive function, and sensory filtering.
Another alternative is the “Graphic Equalizer Spectrum”, which captures the Autism spectrum as a complex audio slider, with multiple dials, all with their own individual settings that might be locked or might fluctuate.
Another is “prism theory”, described by the Chimerical Capuchin. Each individual has a unique processing prism through which input is filtered, and from which metaphorical light is reflected, where that light is the external behaviours and outward expression we see.
All of these re-imaginings of the Autism spectrum are valuable and reflect the lived experiences of the Autistic population.
But the linear spectrum is still a spectre hanging over the Autistic community, stripping us of our humanity, our right to grow, to mature, to develop … and ultimately to regress, to backslide when things are tough.
Let’s take a moment to step back from Autism and consider you.
Imagine if I asked you to place yourself on a two-dimensional line of functioning. Nothing to do with Autism, just a standard, regular, non-autistic functioning line.
Your point on that line needs to account for everything in your life from your ability to be independent and autonomous, to your own – and other people’s – judgements about your contribution to society (are you a taxpayer, is your job worthwhile?), to the strength of your family relationships, to the quantity of your friends (probably measured against a standardised norm of what is the “right” number of friends, and probably not taking into account the quality of those friendships), to your education, to your ability to communicate across contexts and genre, to your values, to your perceived intelligence, to your ability to process new information or retain old, to your general functioning … Now go ahead and add in your dignity and your humanity: your value.
Now imagine that you actually didn’t get to choose that place on the line. Imagine that the place you’ve chosen for yourself is ignored, and that your “real” position on the line was dictated by others, and how they see you, or what they see in you.
Imagine that your contribution to where you feel you should be on the line was ignored, shunted aside, given no consideration, your counsel not invited and certainly not welcomed. What if the people who prescribe your place on the line were not even your friends and family, people who know you – and your worth – intimately?
Imagine that your worth is judged by strangers, observing superficial conditions, who find you wanting.
Now imagine that your place on the line is static, with no room for growth, no capacity for the maturity of self-reflection and wisdom.
You don’t move “up” the line as you learn more, experience more, develop in the way that every human develops across their whole lifespan.
There’s no room for you to move “down” the line either: the way you function now is the way you function for the rest of your life. When you’re the first-time parent of a newborn, or when your own parent dies, or when you lose your job, move house, support a sibling through chemotherapy … Still the same place on the line, whatever contextual factors might impact you. That’s on a macro scale.
Now consider the micro scale: every day, you need to function on that point, on that line, regardless of whether you’re hung-over, you’ve missed breakfast or your all-important-morning caffeine dose, you have a major work commitment, you have a migraine, your period, a cold.
It’s limiting, right?
It reduces you, and it reduces your experiences – your development, your progress – to nothing. It gives you nowhere to go, no opportunity to live, no opportunity to feel the stressors and the joys, the losses and the wins, that we all experience every day.
And yet, that’s exactly what a linear spectrum does to Autistic people.
We are not static. We grow. We regress. Just like you.
Our functioning on any given day, on any given week, or month, or year, fluctuates depending on the many variables and contextual elements of our lives. Some of those may be external, some may be internal. We are not one isolated element; we are the sum of our parts, the whole made up of the immeasurable number of lines that would be necessary to comprise the entirety of human experience.
I’ve been trying to think of the right analogy to capture the complexity, the fluidity of the Autism spectrum, if we’re going to keep that language.
I have always been attracted to the imagery of a kaleidoscope or a fractal, but however stunningly beautiful and complex these are, they are fundamentally based on a repetitiveness that isn’t representative of the human – of the Autistic human – experience.
Maybe think about the Autism spectrum like a sunset. If you watched every sunset, every day of your life, you would never see the same sunset twice.
And the sunset you see is not the sunset someone else sees, even if you are sat shoulder-to-shoulder, staring at the same scene.
Over time, of course, you would learn to recognise some similarities to the sunset: the hues of the sky, the patterns of shadow, the play of light. If you learned to look carefully, you would also begin to recognise all the subtle differences, the nuance, the depth, the intricacy, the interplay of elements.
Sometimes you might be watching the sunset from a different vista and see something you’ve never seen before … maybe the fiery scarlet of a sunset in the tropics, or the cool lilac-blue hues, stained with a blush of pink, as the sun dips behind the Norwegian glaciers.
Sometimes you might think you’ve become accustomed to the sunset, that you know it. But then a storm will roll through, whipping across the sky with a zeal of movement and ferocious lightning, tinging the sky a sickly grey-green that heralds a coming hailstorm.
Sometimes that sunset will be stunning. Sometimes it will be mundane. Sometimes it will be awesome.
But it will be ever-changing, ever reacting to the conditions that shape it – shifting depending on who sees it, and from where, and with what eyes – a fiercely independent force, not able to be confined by an outside observer who could never really hope to know the depths of its complexity. Rather like the Autism spectrum.
For more of Reframing Autism’s Introduction to Autism series, please click on the following links:
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.