Categories
Spotlight

Reverberations (Part 2)

The recent spike in diagnoses of autism […] has prompted some to suggest that it is an excuse for bad behavior or the latest clinical fad.

Amy Harmon

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[…] the stamp of medical authority.

Increasing numbers of children are given increasingly specific labels, ranging from psychiatric and neurological diagnoses such as Asperger’s and attention-deficit disorder to educational descriptors including ‘gifted’ and ‘learning disabled.’

Maia Szalavitz

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Today, autism has broadened into an almost catch-all social category. Anyone who is withdrawn or rigid or awkward might be suspected of being ‘on the spectrum.’

Caroline Narby

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Remotely diagnosing famous geeks has become a kind of hipster parlour game.

Steve Silberman

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Every generation has its defining psychiatric malady, confidently diagnosed from afar by armchair non-psychiatrists. In the fifties, all those gray-suited organization men were married to ‘frigid’ women. Until a few years ago, the country of self-obsessed boomers and reality-TV fame-seekers and vain politicians and bubble-riding Ponzi schemers made narcissistic personality disorder – diagnosis code 301.81 in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fourth edition – the craziness of the moment. And who among us has not proudly copped to our own ‘OCD’ or ‘ADD,’ deemed a mercurial sibling ‘seriously bipolar,’ written off an erratic ex as ‘obviously borderline,’ or nodded as a laid-off friend pronounced his former boss a ‘textbook sociopath’? Lately, a new kind of head case stalks the land – staring past us, blurting gaucheries, droning on about the technical minutiae of his boring hobby. And we are ready with our DSM codes: 299.00 (autistic disorder) and 299.80 (Asperger’s disorder).

[…] Such elasticity is nowhere so relevant as at the fuzzy, ever-shifting threshold where clinical disorder shades into everyday eccentricity. The upper end of the spectrum is the liminal zone where Aspies, as people with Asperger’s call themselves, reside.

But this is not a story about Asperger’s, autism, or the spectrum […]

It is, instead, a story about ‘Asperger’s,’ ‘autism,’ and ‘the spectrum’ – our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.

Benjamin Wallace

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While delving into discussions on neurodiversity, I came across fanciful lists of fictional characters headcanoned as autistic. Character X strives for justice: they are autistic. Character Y likes reading alone: they are autistic. Character Z is passionate and talkative: they are autistic. In fact, any character even slightly atypical/loner/enthusiastic is likely to be promptly declared as having autism. This is how I found out that the main characters in My Little Pony were autistic, because they all had significant interests and plenty to learn about friendship and social relationships. My god. Is autism supposed to be the sole reason people have any depth at all?

La Chouette

(translated by Axelle Ezhr)

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[I]t has become fashionable in some circles to describe the spectrum as the very womb of modernity.

[…]

The same rose-colored impulse has driven an Aspie wave of revisionist psychopathography, in which such diverse historical figures as Thomas Jefferson, Orson Welles, Charles Darwin, Albert Einstein, Isaac Newton, Andy Warhol, and Wolfgang Amadeus Mozart are supposed to have been residents of the spectrum.

The time-traveling diagnoses often feel like cloud-reading – the case for Darwin as Aspie, as set forth in Genius Genes: How Asperger Talents Changed the World, relies on diagnostic bullet points: his childhood as ‘something of a loner,’ his ‘obsession’ with nature, his routine of counting the laps of his nightly walks in later life.

Benjamin Wallace

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People write characters based on personal experience, stereotypes, and personal ideas of what seems interesting. Unless you are a hermit, you’ve met multiple autistic people. (You may have thought they were ‘quirky’ or ‘very introverted’ or ‘stereotypical engineers.’)

You’ve read or watched media with characters based off of autism stereotypes. They’re ‘geeky,’ ‘awkward,’ or ‘free-spirited.’ […]

Some of these characters are stated to be autistic. Other times the authors dodge the question to avoid needing to write a well-researched and responsible portrayal. Other times the writers wanted to write someone ‘quirky’ and didn’t realize that their idea of ‘quirky’ looks very autistic.

You can read or watch media with autistic or autistic-coded characters. You can meet autistic people whether you know they’re autistic or not. And when you write about interesting people, you’ll probably aim for writing people who are a little unusual. […]

Luna Rose

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Autistic Representation and Real-Life Consequences: An In-Depth Look

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When you are an unusual person, especially if you are disabled, people will often tell you that they “want to hear your story”.   

Often, it’s not really your story that they want to hear. Often they have a story in mind that they want, and they want it to come out of your mouth in order to validate their theories about people like you. […]

Ruti Regan

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Telling your story without being a self-narrating zoo exhibit

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Categories
Spectrum

Lines – Amber (Part 2)

Sometimes the same behaviors in a person {read as} neurotypical would not even be noticed.

But because people with autism are scrutinized all day, every day, by teachers, therapists, parents, and almost everyone else around them, their behaviors are labeled, treated […]

Partial quote, Lisa Jo Rudy

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When you tell me there is no such thing as normal, this is true, in a sense. The things we as a society prize as normal can not all be found in one person. […] There is no one ‘normal’ person, never was, never will be. So many of us are more comfortable with people like ourselves that we take as normal those with a certain amount of similarity to ourselves, and if we have sufficient power in society, this normal may override the normals of others.

Alyssa Hillary

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There is simply no need to speak at all of ‘what makes us human’ in scientific discourse. What makes us human is nothing, save perhaps our rich diversity.

Sophie Vivian

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A lot of people think they can relate {to my struggles} which means it’s brushed under the carpet as not a big deal.

Partial quote, Amy Miller

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“You know how it is. People like that . . . they don’t experience emotions the same way that you and I do.” […]

I thought about telling her [that I am autistic]. I chose not to. I’m not sure what it would have accomplished if I had told her […] revealing myself to be a person like that

The truth is, I don’t experience emotions in the same way as that woman who spoke to me about her disabled clients. Or in the same way that you do. No one does.

Human beings are cognitively and behaviorally diverse. We are so diverse that we defy taxonomy entirely.

There really is no norm, no fixed point of reference from which to deviate.

Caroline Narby

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[F]ew issues are completely exclusive to one group, but some things affect some groups more strongly than others, and that can be very important.

Elizabeth Bartmess

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[S]ome critics […] suggest abandoning the term ‘autism’ altogether. In their opinion, labelling autistic people as such was merely a mistake: We thought there was a natural category called ‘autism,’ but now that we know more about it, we can see that this was an error.

[I]dentifying as autistic may not be biologically meaningful, but it is politically meaningful

[W]e have our own communities, norms, and practices […] Autism, in other words, has begun to develop into a culture, and this culture opens up the space for autistic behaviors to begin to manifest as meaningful […] challeng[ing] existing standards of acceptability within […] dominant social and ideological framework[s]

Some of our most significant and deeply-entrenched human categories – like race and gender – are partly rooted in a constellation of physical elements, and partly in historically situated social construction.

They do not reside on a single gene, or even a network of genes, and yet they are both extremely ‘real’ and extremely important to our conceptions of self and others.

Robert Chapman

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When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up.

When you are disabled you don’t have that luxury.

 

When you are disabled you have to prove, over and over again, that you are a real person […]

Julia Bascom

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In a world where autism exists, because we do taxonomize human difference and build systems of power around it, I am autistic.

Caroline Narby

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Categories
Spectrum

Lines – Glass (Part 3)

Typically developing babies are reducing their attention to faces and increasing their attention to objects, [and] their social development […] soars. Moreover, rather than distracting babies from social engagement, objects and the hands that manipulate them offer new ways to share attention with others.

Emily Morson

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It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. […]

Many argue that all people have to do this ‘sucking it up’ to some extent. After all, we cannot just act however we wish when we are in public. I agree.

However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot ‘suck it up’ long enough each day to be gainfully employed.

Judy Endow

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It’s Stressful to be Someone You’re Not

Faking it ‘til you make it may work in the short-term, but trying to sustain it in the long-term is unbelievably stressful. We all have our preferred ways of doing things. And because those ways are normal for us, they require the least amount of energy. We can do them without burning out or disappearing from ourselves in the process.

Faking it is supposed to magically smooth away our feelings of self-doubt and low confidence, but in reality it puts extra stress on the body. People who continuously act a pretense, outside their natural personality preferences, at some point will start to feel anxious, exhausted, angry and plain-old frustrated. It’s a bit like pulling the plug in a bathtub; you won’t notice much difference in the water level at first, but eventually everything will just drain out.  

Jayne Thompson

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We are all, every day, engaged in mind-blindness against people we do not agree with or comprehend. We are all unempathic about some people and some groups, […] toward people who are not like us.

Karla McLaren

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How many ‘normal’ people have enough human feeling to befriend and understand non-normative people? How many ‘normal’ people are trapped in their own ‘normal’ worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting ‘normally’ by doing all the things that, when non-normative people do them, are considered evidence of pathology.

Rachel Cohen-Rottenberg

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What’s it like to be neurotypical? […]

It’s being able to fidget without it being called some specialized term which sounds like a euphemism for fidgeting with one’s own unmentionables, have a passionate interest without it being called a ‘perseveration,’ participate in classes and activities without them being called ‘therapies,’ and appreciate the small beautiful things in life without being accused of being unable to see the big picture. […]

It’s living in your own little world just as much as any autistic does, without people making a big deal out of it.

reform_normal

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Some people get labeled because of their disability.

For example:

  • Sheila does not have a disability. Sheila has a bad day. She yells at her sister. People say, “Sheila was being mean today.”
  • Renee has a disability. Renee has a bad day. She yells at her sister. People say, “Renee is aggressive.”

Autistic Self Advocacy Network

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Both satire and very serious

Managing Challenging Behaviors in Neurotypicals

Many neurotypical adults have behaviors that the rest of us find difficult to handle. These people are generally unaware of the stress their challenging behaviors cause for autistic friends and family members. Even the most patient autistic people whose loved ones have challenging behaviors may become frustrated and find their time and energy greatly taxed by the demands of dealing with these behaviors regularly. […]

Restless Hands

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How do we respond to discomfort? To fear?

Let’s look first to film and literary clichés for examples…

We grit our teeth and bear it. We ball our fists and dig our nails into our palms. We bite our tongues to keep from screaming. We pinch ourselves. […]

What do all these methods have in common? They all involve the distraction of pain as a coping mechanism. […]

There’s a reason pain is the universal distractor. Pain is the only form of stimulation that our nervous systems will not acclimate to.

Kirsten Lindsmith

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Sometimes, all of us have meltdowns. Not slight upsets, or moments of rage. Full blown, life sucks meltdowns. If you don’t carry an autism label and you don’t harm yourself or others while having them, they remain private moments of vented frustration one may or may not be ashamed of.

Kerima Çevik

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We must accept that it is a normal behavioural response to having our needs unacknowledged and unmet to lash out aggressively, to engage in attention seeking, and to do things others find annoying. Any of us would do that (and do) if put under enough pressure and if we feel unvalued and unheard.

Michelle Swan

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[…] The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. […] I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you.

Erin Human

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Followed by the series:

Categories
Spectrum

Labels (Part 2)

I have never heard either of these labels [high-functioning and low-functioning] deployed to mean anything but “still not quite, you know…one of us.”

That’s what “____-functioning” means.  “Not one of us.”

Dani Alexis

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In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That’s always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it’s useless. Talking about low, medium, or high support needs isn’t going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can’t shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Alyssa Hillary

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For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are […] It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence […]

It’s a slippery slope, isn’t it? […] You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. […]

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds.

VisualVox

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Semantically speaking,
         autistics are outsiders by definition.

Because autism, basically, is defined by divergence.

Based on two articles by Caroline Narby

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Just because it’s not information you need, that doesn’t mean it’s a useless word.

Alyssa Hillary

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Labels are Tools – They can be used for good or bad things

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When labels become boxes, that’s bad. But sometimes labels are road maps. Guidebooks. They show you how to find the information you’ve needed but never knew how to find or even if it existed.

Jess Mahler

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Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

Ruti Regan

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[T]hey think the problem was that they treated their child like they were intellectually disabled, and they weren’t.

But that’s not the problem.

The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

Julia Bascom

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It would be great if labels like autism weren’t necessary.

It would be great if ableism didn’t exist, but that’s one hell of a hypothetical.

Ableism is an extreme and far-reaching problem that can’t be solved without labeling the specific disabilities of the people being harmed.

In a world where most people speak with their mouths and assume everyone else does too, I need the autism label to explain why typing is better. In a world of sensory assault, where “I don’t want to” is not a sufficient excuse, I need the autism label to justify my self-protection.

Alix Ditto Au

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Yes, labels may bring prejudice and ignorance, but they can also bring understanding and much needed support.

Laura Rutherford

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