by Cami Renfrow
M is for Misunderstanding
That misunderstanding permeates the autistic experience is probably a surprise to no one. The thoughts conjured by the word are likely far different between readers of different neurologies, however.
It is true that autistics often tend to take in so much information with our entire bodies, that the salient data points that look ‘obvious’ to the general public (new situations like where to go, when to go, and who to reach out to – basically how to act on the external world effectively) don’t always stand out to us and can get subsumed amidst the influx of informational beauty, data patterns, sensory joy and pain and fractured chaos, depending on the day’s experience.
So until it’s broken down and pointed out as important – until we understand and can picture which details exactly are called for at which moment – we can easily misunderstand the common culture’s scaffolding in communication, in relating, in effecting change. In filling out forms. That’s one form of misunderstanding. And that barrier sucks, it really does, but if only we have an ally, an advocate, who can help us navigate and frankly understand what’s going on at the surface level, then we’re good to go.
Autistic people are probably already way ahead of my words, as they’ve likely moved on to thinking about the misinterpretations of others toward us: the far, far greater barrier to full community.
This has the potential to change with such a simple shift, but without that shift people are crushed, isolated, gaslighted and left behind. Humility and recognizing the flood of information autistics are filtering through are the keys to more accurate interpretation and understanding of our intentions.
Given mixed signals we can’t detangle which ones we’re ‘supposed’ to react to, so we often guess wrong or withdraw. Mixed signals are so common, like unwritten rules that go against posted ones, or passive aggressive facial expressions and sounds – and let’s be honest, most people who don’t deal with their emotions are walking around giving mixed signals. This withdrawal or bad guess is misinterpreted by non-autistics as rude, disinterested, and above all deliberate.
Given processes and hierarchies to navigate that we don’t understand, we may be unable to scale them with the information at hand. This is misunderstood by non-autistics as deliberate inertia – deliberately choosing to not accept help, to not take action, to not accomplish what we want and need to survive. As lazy, stubborn and defiant.
Given the punctuated sensory profile experienced widely among autistic people, and its imperceptibility to those around us, we might as well be fighting an invisible dragon. We may have self-protective reactions against trauma or pain, or seek sensory self-regulation with input that can help integrate, calm, please and focus the nervous system. These absolutely necessary steps to living a healthy day are misinterpreted as deliberate defiance, disruption, laziness, selfishness, drugged behavior, manipulation…. you get the picture.
For someone who’s able to suppress or bypass many of these factors through great energy expense and preparation and careful arrangement of their lives, they’re still facing a serious public misunderstanding of what autism even is, what it looks like, how it manifests. If the public is clueless as to what autism really looks like, blame lies squarely on incurious ‘experts’ who base diagnosis on witnessing behavioral manifestations as if they themselves are autism.
Systemic effect of misunderstanding
In families, self-protective and self-regulatory behavior is squashed and punished and it shapes the way the family sees everything the child does – as deliberately uncooperative – guaranteeing it will be harder for the child to be heard lifelong as each continued interaction will be easily dismissed as it’s viewed through a distorted lens.
In schools, self-protective and self-regulatory behavior is misunderstood as deliberately disruptive and punished and excluded.
In workplaces, self-protective and self-regulatory behavior is expelled and ostracized if it’s even allowed in the door.
Among community, self-protective and self-regulatory behavior is seen as rude or dangerous. Loud music, fluorescent lights, confusing buildings and artificial scents can block our access to basic services and it’s interpreted as self-isolating, detached or strange, an intentional choice to not take charge and be part.
Among medical professionals, misunderstanding of autism is so awful as to badly endanger us.
Among authority, structures of power and law enforcement, misunderstanding of self-protective and self-regulatory behavior kills and institutionalizes.
Among ‘experts’ and researchers, misunderstanding of autism and a complete lack of curiosity in actually connecting with autistic people, leads to clueless, grasping, fantasy study conclusions like ‘hey, maybe it’s a lack of impulse control that leads to the 9x higher suicide rate in autistic people‘. Instead of, you know, asking us… and looking at the pervasive and hopeless lifelong effect of being misinterpreted and shut out at every level of society.
The common theme here is that non-autistics are lacking receptivity to information swirling all around, missing all sorts of signals in the environment, and because of simple majority they often pretend anyone who is reacting to what they can’t sense is acting deliberately out of step.
Once that’s happened often enough, we start to wonder if non-autistics’ continued misinterpretations of our well-intentioned efforts to survive are themselves deliberate, lazy, selfish or manipulative.
Most of us are authentic, compassionate, honest, funny, interesting, unorthodox, deeply sensitive, courageous because we have to be, passionate in a few areas of expertise and working harder than you will ever know to meet you across the divide. Seeing life through our eyes will change yours.
Autistic people spend each day of our lives trying to understand, accommodate and navigate the language performance, roles, hierarchies and hidden meanings of the majority neurotypical culture, to overcome a divide only the rare non-autistic person tries to bridge. This majority ignorance exists despite the fact that anyone in a position that works with the public will sometimes be working through processes with autistic people whether it’s recognized or not. If you’re in a position of power, you in particular need to know that it’s often incredibly hard for an autistic person to ask for help, to ask the right empowered person in the right way at the right time that conveys the need correctly. When they finally ask, Listen and Act, dammit – guide them to the right next step, help clarify terms, overlook volume or wording of voice, as they may be have mustered all their efforts for this and be unable to make another attempt.
What is it you misunderstand about autistic experience?
Autistic people hold the only real authority to answer your question.
This is part of a series of posts addressing themes from the neurodiversity movement and paradigm which will be published during the course of April 2016. To read the rest of the posts, please click here.