Humans naturally relate each other. It is how we connect. We empathize by relating one of our experiences to that of the person we are engaging with. Shared experiences, such as being on hold with customer service or not finding jeans that fit properly, allow us to bond with our fellows and recognize one another as members of the same tribe. Unfortunately, in the context of autism, efforts by a neurotypical to relate to the experience of someone on the spectrum are not only misguided, but belittling and minimizing. For instance, while a neurotypical person may dislike, even hate, large crowds, an autistic in the same situation would be in fight-or-flight panic mode, unable to hold him or herself together and at risk for a humiliating public breakdown if they can’t escape.
Not the same. Not even close.
Some neurotypicals try to empathize with their autistic peers by mistakenly assuming that autism is just an extreme form of introversion. While I appreciate the attempt to hang the experience on a recognizable scaffold, that is just not how autism works. In fact, some autistics are actually extroverted and don’t like being alone. Strictly speaking, an introverted person needs to be alone to recharge, while an extroverted one is energized by being around people. Neither of these have anything to do with the experience of autism.
Being autistic is so different from the neurotypical experience that it defies our natural inclinations to relate to another person. We autistics cannot imagine what it is like to be neurotypical, although many of us have learned to mimic it, a technique referred to as masking that entails a significant cognitive investment–and comes with a significant psychological downside.
Similarly, the neurotypical cannot imagine what it is like to be autistic. Many autistics themselves are unaware of the depth of difference between their experience of reality and that of those around them. For a neurotypical person, the very idea that an experience of reality fundamentally different from their own exists is virtually impossible to imagine. The social milieu in which we operate is designed by and for a very specific way of thinking, feeling, and reacting. As this is the way the vast majority of people experience this milieu, it is rendered invisible. It is not a manner of being in the world. It is the manner of being in the world, a perception that necessarily precludes the existence of any other.
Before autistics can advocate for what we need, we have to carve out not just how we experience the world differently, but the very fact that such a thing is even possible. In a society designed around relating in, this entails explaining to everyone who asks that a different experience exists before we can describe what this difference is.
This is rendered more challenging by a current lack of terminology therein. (I can only speak for the English language in this respect; feedback from native speakers of other languages would be most appreciated here.) How do we explain the difference between a filtered and unfiltered visual and aural environment? How do we describe the physically painful responses we have to certain stimuli? How do we effectively convey how we shut down when depleted? How do we talk about how painful it is to feel like aliens in our own cultures, unable to engage with our fellow beings the way they engage with each other?
How do we talk about a completely unrelatable experience to our well-meaning peers trying so hard to imagine what it must be like?
I used the word “scaffold” earlier, purposefully. In terms of learning, a scaffold is a structure we build in our minds not to understand something, but to use to understand something. This difference is critical.
No such scaffold exists for autism. A bridge between the neurotypical and autistic internal and external experiences of the world we live in has yet to be built. Before we can establish what the autistic experience is, we have to build a scaffold for it, the core piece of which is an acceptance by neurotypicals that a vastly different experience of reality exists. From there, we can start to lay out what it entails.
Only then will we be able to start creating a place for ourselves in this milieu. Only then will we be able to describe the indescribable. Only then will we have a platform from which to ask for and design experiences built around our unique needs.
Critically, we need neurotypicals to resist the temptation to relate in when we talk about our autism. Instead, we need them to express a willingness to open their minds to a different way of perceiving and feeling the world.
Let the scaffolding begin.