by Penni Winter
I think that just about every autistic person has experienced the frustration of struggling to communicate his or her reality to someone not on the autistic spectrum and failing. It’s my feeling that there are a lot of different reasons for this problem.
Sometimes, the neurotypical person simply fails to understand what we’re trying to communicate. Some people are too impatient to truly listen to anyone else, and just dismiss our explanations before they’re halfway out of our mouths. Others just seem baffled, staring at us in blank confusion. Some, however, seem to get it, saying brightly, “Oh yes, I understand!” and then following up with something that reveals that no, actually, they don’t. I believe this happens because, despite the supposedly greater empathy of neurotypical people, they often aren’t able to “put themselves in the other’s place” if that “other’s place” is too radically different from their own.
At times, if we try to explain further, we hit another barrier – that of a refusal to understand. If what we are saying can’t be even remotely fitted into what other people consider “normal,” they reject it, telling themselves – and us – that this “can’t be” correct, that “no-one could ever think like that,” or even that it’s “proof” of something seriously “wrong” with us. (I kid you not, all of these things have happened to me.) Dialogue usually ceases at this point.
But we often fail to express our truths clearly. For some, this is due to difficulty with the physical act of talking, or with organising or “translating” our thoughts and mental images into words, especially under stress. Many of us have also been made to feel so much shame about our “difference” that we’ve become unable to talk about it. And some, of course, don’t yet know or are still in the process of understanding that they’re on the spectrum, and thus understanding that others feel the way they do, which they’ve been told forever is “wrong.”
But I believe there is a deeper problem – that of the language itself being inadequate to communicate the truth of our autistic lives. Too often, even those who are skillful with words attempt to describe something from our reality and are told “but everyone feels like that occasionally.” This is like saying that because most everyone has felt breathless now and again, they know what it’s like to have asthma. Or that because they’ve had a rash, they know all there is to know about living with eczema. The words of the English language (and possibly all languages) are somehow too “weak,” too bland, or too limited in meaning to convey the totality of what it means to live with autism.
Many people, for instance, suffer from a degree of social anxiety, due to lack of social skills and/or general shyness. But most wouldn’t know what it feels like to have to struggle hugely to take in what someone is saying (due to auditory processing challenges), consciously (if we can) work out any hidden meaning, attempt to “read” the other person’s body language, block out multiple other sensory inputs, and then work out how to respond, without too much of a time lag – all at the same time. For your average neurotypical person, all this happens without thought. For those on the spectrum, it is hard work, and difficult enough with one person. With a group, or in a noisy setting, it becomes nearly impossible. We invariably miss so much that many of us just give up, and end up dropping out of most social activities altogether. “Social anxiety” is a pale term for the potent mix of fear, hurt, shame, embarrassment, anger, avoidance, and low self-esteem that results from a lifetime of such experiences.
Some words seem to mean different things to neurotypical people than they do to us – the word “meltdown,” for instance. For many neurotypical people – in terms of behaviour rather than nuclear power stations – it means a huge tantrum. But to someone on the spectrum, it means an agonizing breakdown. Many of us on the spectrum have attempted to express how it feels, for example, when you’ve spent too long in a crowded shopping mall, and all the noises, smells, and visual stimulations which up till then you’ve been successfully blocking or managing to “mute” suddenly can’t be blocked any longer and hit you with full force, crashing down and drowning you under an intolerable weight. How your heart starts to pound, your breathing speeds up, thinking becomes incoherent, speech impossible, and all you want is to leave. NOW. And how, if you can’t leave, or people get in your face demanding “what’s wrong with you,” or start yelling at you, you can end up screaming, crying, or even throwing things, in sheer overwhelming panic and agony, all of which is misinterpreted as a mere “tantrum.” Either we re-define “meltdown,” or we need a new word.
Some words that have been coined to describe specific problems are just too clinical or detached. A typical example is that of “executive dysfunction,” a label for difficulty with organising one’s daily life. It sounds like a boardroom out of order or a quarrelling committee. It certainly doesn’t seem to describe the extreme state many of us are familiar with. Typically, it means that we don’t really know how to organise ourselves, and when we do try, it just seems to make things worse. Our minds reel from one tangled skein of thought or haphazard activity to another. Tasks are half-done or done badly and then abandoned. Schedules and appointments are not kept, and we can end up standing in the midst of an overwhelming mess, reduced to tears and on the edge of that meltdown. Others tear us to shreds for our “failures.” We feel like failures, and struggle to just get through each day without disaster. Imagine a life in which this is a frequent occurrence, and “executive dysfunction” doesn’t even begin to cut it.
And we know that there are many, many more autistic experiences or states of mind for which there are no words at all, not even inadequate ones. There are only feelings, images without words to match them, or happenings that cannot be described. They can only be lived through.
Thus, whenever we try to share our truths, we’re trapped and limited by these lacks in the language. With an inability or refusal to understand on the part of other people, and problems organising our thoughts into words, it is little wonder that we autistics feel as if we are “using the same words to speak a different language” from the non-autistics around us, and that we have “disabilities” in the area of communication skills.
And no “social skills” class is going to remedy that, nor can we expect neurotypical people to change the language for us. We have to find our own words to describe our own experiences, as have so many disadvantaged, downtrodden, and minority groups before us. We’re only at the beginning of the process of change for us, and it’s obvious that there’s a lot of work to do. Finding – or creating – the words to express our reality is just one part of that work. I believe, however, that it is an urgent task.
I know there are some who, even if we do find the “right” words, will never change their attitudes, or only very slowly – just as there were men who rejected the demands of the women’s movement, or white people who scorned the anti-racism message. (Having taken part in both these movements, back in the1980s, I can see a lot of similarities between them and the neurodiversity movement.) Nonetheless, without even the beginnings of a “language of our own,” we can’t begin to communicate our truths to even those non-autistic people who might be receptive, and they can’t begin to understand or change their attitudes or practises. And until they do, we will continue to be misjudged, misunderstood, mistreated, excluded, and marginalised.
I don’t know about you, but I’ve had quite enough of that.
About the Author: Penni Winter is a writer, artist, and mother in her mid-50s from New Zealand. She is self-diagnosed with Asperger’s Syndrome, and also has Chronic Fatigue Syndrome. This piece first appeared on her blog, A Stranger in Godzone, and is reprinted here by permission.