M. Kelter
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| Photo by Boudewijn Berends,
used under a Creative Commons license [image: head and shoulders of a person wearing glasses backlit by partially-lighted fog and clouds.] |
When it comes to online discussions about autism issues, I regularly interact with two realms.
The first realm is one we’re all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions … just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook.
The second realm consists of an invisible community. It’s made up of people who are absorbing every discussion, every debate, every article … yet they are not participating, not sharing their own ideas. They’re just there, quietly and attentively taking it all in.
This second group is made up of suicidal autistics.
This is not just an invisible community, it’s a large one. One recent study found that two thirds of spectrum-diagnosed adults surveyed had contemplated suicide; 35 percent had actually made plans or an attempt.
And given the huge number of autistics who go undiagnosed, due largely to gender and racial bias structured into the diagnostic process, the rates of suicidal thought and action may actually be much higher.
I get a lot of emails from this second group.
A few years ago, I started writing online, sharing my experiences with autism and depression. Eventually, people started to write back. Their stories and circumstances vary, but the underlying thoughts are always the same.
These are folks who are struggling to find a place in life. They don’t see a world that wants them. They hate who they are. They hate their differences. They want to die.
No matter how many emails I get, from different points of view, those reactions are always the same.
I mention this because- people who spend their days in the first realm? Sharing articles and reactions and opinions about autism? I don’t think they have any idea that this second realm exists. I don’t think they have any idea that this second realm is right there, every day, listening to and reading everything that is said about the spectrum.
Depressed autistics very much want to know if they should be here, in this world. They want to know if there’s any place at all where they can exist and breathe and feel at peace with their differences.
Some are interested in connecting with others. They are profoundly lonely. Some prefer solitude. They’re not lonely, but wonder why they’re alive. All of them are grappling with self-hate (autism doesn’t cause depression, but a world hostile towards difference certainly can). And all of them, at some point, are sorting through online discussions in order to gather information and answer the lethal questions posed by depression.
They read your posts. They absorb your opinions.
If more people knew about this second realm? I don’t think they would use a lot of the words that are frequently brought up in autism discussions. Words like “burden,” “diseased,” “emotionless” … phrases like “closed off,” “shut down,” “lacking in empathy.”
A huge portion of the vocabulary surrounding autism is inaccurate and damaging … yet readily accepted by the world at large. People have used this kind of language for so long that they’re not even aware of what they’re saying.
Just this week, Rolling Stone magazine featured an article about autism. In it, a father referred to his autistic son as “rabid”…he described raising him as a “slow death.” The entire article was characterized by alarmist phrasing like this. One could read it and imagine the author was describing animals, not human beings.
The worst purveyors of dehumanizing rhetoric are usually the fake experts, pseudo-scientists and wanna-be gurus who have a pet theory about autism causation. The way it works is that, if you have one of these theories, you generally need to scare people into listening to you. If people aren’t scared, they’re more likely to question the scientific validity behind this or that theory. And the result is a lot of end times, apocalyptic fear-mongering. Autism is a disease … an epidemic. A scourge.
Self-described advocates seeking to fund research also put a lot of effort into ensuring that autism is made to seem as frightening as possible. Like the author of the Rolling Stone article, this crowd loves over-wrought phrasing, with autistics often referred to as tragic carriers of disease. Jill Escher, the president of the San Francisco Bay Area Autism Society — a group that is supposed to be dedicated to the betterment of autistic people — has characterized autism as a “crazy epidemic of really horrific neurodevelopmental disability” that “prevents you from living a normal life.”
Meanwhile: suicidal autistics are reading every word. Every single one of them. They already feel broken. They already question if they are “really” human. And the rest of the world is willfully, sometimes gleefully, heaping salt onto these emotional wounds — all for the sake of cheap rhetorical victories.
What’s most frustrating to me is that nothing about this issue is complicated. Don’t use dehumanizing rhetoric. The end. It’s that simple. Many different areas of autism can be hard to grapple with, discuss. Word selection is not one of those areas. It’s an easy fix. Don’t use dehumanizing rhetoric.
Not that this means anything to the fake experts, the pseudo-scientists, the wanna-be gurus. They’re too often working an angle, not engaging in real issues. But I have to believe that the advocacy community would at least consider putting more thought into the words they use. I have to believe they can look around at the world and see what happens to vulnerable groups, when we conceal them behind rhetoric usually reserved for plagues and animals.
The media, for its part, needs to stop relying on perspectives that wallow in misery just because they provides a convenient shortcut to emotional impact. No reader, viewer, consumer — not one conceivable audience — can benefit from stories that lapse into outdated, stigmatizing narratives about autism.
In other words, it’s not always about choosing the right words. Sometimes it’s about lifting up the right voices. It’s a specific area where the media can do a better job of educating itself about autism, and learning to make distinctions between maudlin cliches and authentic perspectives.
Usually when I make these points during online discussions, the push back goes something like this: “But we have to be able to tell our story.” Or: “We’re just being honest about what our life is like.”
I’m calling fallacy here.
I don’t buy that the topic of autism compels us to denigrate autistics. You can tell your story … and you can refrain from using stigmatizing language. Both of those things are possible, at the same time.
It’s a false dilemma to suggest otherwise. It’s a false dilemma to imply some hard choice between truth and decency. We can talk about the hard stuff. We can talk about the difficult days. And we can elevate our words and ideas.
That’s achievable. I refuse to accept any attempt at a separation between what’s honest and what’s humane.
The impact of demeaning rhetoric on suicidal thinking is by no means the only concern here. The recent mass-murder of disabled people in Sagamihara, Japan demonstrates the catastrophic effect of viewing people with disabilities as problems, instead of human beings.
I just know that, most days, I visit an online world where a lot of discussions are happening about autism. And I see an over-abundance of truly awful words that are too often passively accepted due to their ubiquity.
Then I get emails from autistics who want to die. They’re online and I know they are reading the same discussions I read. They’re reaching out, searching, and coming across words like “burden,” “diseased,” “rabid.”
I know from personal experience: depressed minds have an uncanny ability to seek out and find ideas that confirm their world view. They will readily absorb anything that reinforces the worst interpretations about who they are. And careless autism discussions too often provide fuel for that self-destructive process.
Think about these two realms.
One noisy, fractious. The other invisible, attentive.
Different groups between which there is zero separation. They share the exact same space. And yet, it is painfully clear to me that one group has no idea that the other exists. That an unseen community is right there, reading and absorbing and quietly taking every discussion to heart, all while a very dark calculus plays out in their mind.
If you haven’t thought a great deal about suicidal autistics, you should start. You really should. You should think about their proximity to the ideas you share online.
You should know: what are mere words to you may be another person’s outcome.
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Anyone who is suicidal may receive immediate help by logging
onto Suicide.org or by calling 1-800-SUICIDE. Please know that you are not alone.
For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:
