October 5, 2017

Invisible history

Posted in Uncategorized tagged , , , , , , , at 2:00 pm by chavisory

I started watching Westworld last week. In a scene in the first episode, one of the android characters, a “host” in the immersive Wild West-themed amusement park, has found a photograph in his field, discarded by a guest, depicting a woman in modern clothing standing in Times Square at night. Disturbed and confused, he shows it to his daughter, Dolores, but she’s not similarly affected (at least, not yet).

Lacking any possible context or way to make sense of what she sees, she can only say over and over again, “It doesn’t look like anything to me.”

She can’t process the possible existence of a whole reality that she has no framework at all in which to understand.

 

With the premieres recently of both Atypical and The Good Doctor, I was having a conversation about fictional representation of autistic characters–what we wish we saw more of, what we find intolerable.

And one of the things I have managed to put my finger on that unsettles me consistently, that leaves me unable to connect with a lot of the portrayals I see, is the tendency for autistic adults or near-adults to be portrayed as baffled, bumbling, almost complete naïfs about the non-autistic social world and its expectations and the realities of how things work.

As if, at the age of 18 or even older, they walked out their front door and encountered an overwhelming and often hostile world for the first time yesterday.

When, in reality, and unless we have been terribly, inappropriately isolated or sheltered (though often even then, often especially then), we’re actually well-acquainted with the fact of a world that doesn’t work terribly well for us, and we’ve been navigating it for a long time.

We aren’t dropped into our world for the first time in the opening teaser of a television episode.

A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are.

So, for instance, by the time we’re adults, we have made a lot of social mistakes and had to deal with the fallout.

We’ve often had to be responsible for ourselves in ways that other people our age haven’t, because adults haven’t been reliable sources of support. We’ve had to teach ourselves things that everyone else seems to just know.

We’ve had to be careful in ways that other people don’t and problem-solve for ourselves in ways most people haven’t.

We have to know things that most people don’t about navigating the non-autistic world. And we know more about what we don’t know than most people even realize there is to know.

We have to anticipate being mistreated or misunderstood almost constantly.

We have dealt with a lot of abuse, ostracism, isolation, loneliness, being disbelieved about our experiences and perceptions, and violation of our autonomy.

We’ve had to work harder to not just fall through the cracks of the world. We’ve also experienced uniquely intense beauty and joy, as well as many of the common experiences and challenges of growing up that most adolescents and young adults experience.

All of those things have impacts, besides that people learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives.

 

And without that grounding in personal history, you’re left trying to construct a character’s personality around a diagnostic checklist, and you wind up with characters who are basically walking autism in some kind of imaginary pure state—without patterns of experience, without memory, resilience, or emotional connective tissue—who therefore have the social navigation skills of 6-year-olds no matter how long they’ve supposedly actually lived on this earth.

 

The more I thought about it, the more I started to suspect that this is actually what people are talking about when they say things like “But you don’t seem autistic.”

It’s not just that we don’t behave like children or that we don’t have the same “kind” of autism as a character they’re familiar with or don’t seem to occupy the same place on the spectrum as their own or someone else’s child.

It’s that the autistic characters they are used to seeing have no depth of experience.

They are people without history.

A growing number of people know children diagnosed with autism. But autistic adults are still overwhelmingly likely to be undiagnosed, or closeted, or both—if they’re not isolated from their communities in group homes or institutions or segregated workplaces, and many still are. So many people don’t really know autistic adults, or at least don’t know that they do. Their knowledge base of autistic people is still being drawn from children, or from fictional representations based on clinical knowledge of children.

And that leaves the reality of our life experiences, both positive and negative, and their impact kind of invisible. So if autistic people change or grow as people, or pick up skills we weren’t expected to, it must be because we overcame or outgrew autism, or “must be very high-functioning” in the first place…and not because we are capable of learning from our own experiences and the demands of our environment.

I speculated once (apparently in a comment now lost to the depths of the internet, sorry) that the myth of autism as developmental stagnation or eternal childhood, and a lot of “not like my child” rhetoric directed at autistic adults, stems largely from this inscrutability of what the passage from childhood to adulthood looks like for autistic people.

“They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them,” writes Rabbi Ruti Regan.

Most people just don’t have a framework of knowledge about the substance of our lived experience.

So it doesn’t look like anything.

 

A lot of the time, when autistic people complain that autistic characters are unrealistic, it’s presumed to be an issue of a character not representing the traits or experiences of a certain faction of the autistic community, and we get responses like “But one character can never represent all autistic people.”

But that isn’t the problem. It’s not that they’re not exactly like ourselves; it’s that they have no depth or complexity because they have no lived experience, because their creators didn’t know how to give them one.

Well-meaning non-autistic people frequently protest that “You aren’t only autism!” but it usually isn’t we who seem to think that we are only autism and not an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

And yes, autism pervades all of that. But it doesn’t comprise our personalities in a vacuum.

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world. We have histories, and we are affected, like all people, by those histories.

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