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 Anyone who is withdrawn or rigid or awkward might be suspected of being ‘on the spectrum.’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 1)

Continuation of the series:

As a person with developmental disabilities, I get a lot of autism stereotypes and a lot of intellectual disability stereotypes thrown my way. That means some people expect me to be a heartless mind and other people expect me to be a mindless heart.

And they actually believe those expectations to be honoring my strengths.

But that’s not necessarily how it works. There are autistic people with huge strengths or interests in social areas. There are people with intellectual disabilities whose main strengths or interests are intellectual. We don’t have to have a stereotypical set of strengths. […]

And people will either doubt your disability or doubt whether you really have the strengths and interests you do.

They’re always trying to prove that autistic people’s empathy isn’t real, that the intellectual achievements of people with intellectual disabilities isn’t real, that autistic people can’t be compassionate and people with intellectual disabilities can’t be geeky or nerdy or have cognitive talents.

And they’re always trying to say that different disabled people are allowed to have certain things and not others.

Each type of disabled person is supposed to be missing one thing and have something else: Body, mind, heart, whatever.

So we have bodiless minds, mindless bodies, heartless minds, mindless hearts, and whatnot, and that’s supposed to be a good way of looking at us!

The truth is that however you divide it up, every person really has a mind, a heart, a body, a soul, whatever you want to call these things. I don’t personally divide people up that way, but if you’re gonna, those things are universal. Disability doesn’t mean one of them is missing.

Mel Baggs

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The idea of some shared humanity is just that: an idea. One that is too often used to exclude and dehumanize people. But I do think that it can be a useful idea if it’s deployed just so. When it comes down to it, we are all just animals fumbling around on a rock. That is what it means to be human. We do not always make each other feel at home here on Earth, but none of us is truly an outsider, either. We all belong here. None of us are strange visitors who can only hope to be tolerated and accommodated.

Caroline Narby

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Abnormal is often shorthand for extreme. Ah! they say, you simply fail to understand the spectrum! Yes we all experience a little of this and of that, but until you’ve seen mania full blown, an acute psychotic episode, someone so debilitated by anxiety they cannot leave their house, you simply can’t appreciate what real mental illness looks like. This definition seems to work until you look at other examples of ‘extreme behaviours’, at social activists who put their lives at risk for a cause they are passionate about, at kids moving across the country to have a chance to train in the artform they eat and breathe, all the hope and joy and optimism of a couple in love and about to get married. Extreme can be dangerous, can be horrifying and destructive. But it’s also the place of hope for so many, their centre, their joy.

Sarah K Reece

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I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world.

I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. […]

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general.

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.

Mel Baggs

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‘Normal’ people still get sad.
‘Normal’ people still have self-esteem issues.
‘Normal’ people still wish they were someone else.

There’s this misconception among some people that ‘normal’ is this beautiful land of milk and honey and double rainbows, where nobody has any problems or is ever made to feel inadequate.

Chris Bonnello

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[We’re not only autism, but] 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.

[Like everyone else, autistics have] many of the common experiences and challenges of growing up that most adolescents and young adults experience. […]

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. […]

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.

chavisory

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[…]  I have this niggling suspicion, though, that there are an awful lot of people in the world who have been told that they don’t count, don’t get to be in the stories, things were never quite bad enough, or maybe they were too bad to be real. I have this feeling that there are an awful lot of us, and that if we just stopped keeping ourselves a secret, we might blow that lie out of the water.

Julia Bascom

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In recent years, I’ve noticed that we tend to divide the world up into ‘trauma survivors’ and everybody else. But I’m not sure this distinction is entirely real; I think what we’re actually dealing with is people who know they’ve been traumatized and people who have forgotten. Or maybe the division is between people who are visibly shaken by their trauma and those who look solid; after all, we live in a society that places an extraordinarily high value on appearances, where people get a lot of credit for acting as if everything is fine, and a lot of criticism (or pity) for letting their pain show. […]

Lundy Bancroft

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Isolation from support and reassurance is the essential part of the trauma. I was surprised when I first learned that people who are put thru traumatizing experience, if they immediately get support, comfort, reassurance and love, both during the trauma and afterwards, they mostly don’t develop post traumatic stress disorder, they’re able to process and incorporate it. Basically, a human’s ability to accept and survive trauma largely depends on how supported they are, on having a strong community and knowing things will once again, be okay. […]

Furious Goldfish

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Categories
Spectrum

Lines – Glass (Part 2)

There are two definitions for inertia: 1) indisposition to motion, exertion, or change (“I don’t like or fear change.”) and 2) a property of matter by which it remains at rest or in uniform motion in the same straight line unless acted upon by some external force.

Generally speaking, people tend to be inert.  We develop habits, and we stick to them.  It doesn’t matter if the habits are good or bad.  We like predictability (“I like my car and would like to keep it.”).  We don’t want to be confronted on how we do things, what we think, or how we interact with others.  If it’s always been done a certain way, then most people will continue in this customary fashion from the smallest habit to the grandest cultural traditions.  In terms of inertia, this is called uniform motion.  For the most part, we like to remain in a state of uniform motion and/or rest, and this is not necessarily bad.  Society needs structure and uniformity to function from the nuclear family all the way to level of government.

In terms of health, this is called homeostasis.  The human body requires a certain amount of sleep.  We require vital nutrients, daylight, human interaction, physical touch, exercise, and clean air and water in order to maintain homeostasis.  All of this is part of uniform motion.  When an outside force acts upon this homeostatic inertia, that usually means a stressor has occurred like a virus, toxin, physical injury, genetic mutation, car accident, or the like, and homeostasis has been disrupted.  We are no longer inert.

MJ

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4.  When you regulate your daily actions, you deactivate your ‘fight or flight’ instincts because you’re no longer confronting the unknown.

This is why people have such a difficult time with change, and why people who are constant in their habits experience so much joy: simply, their fear instincts are turned off long enough for them to actually enjoy something.

5.  As children, routine gives us a feeling of safety. As adults, it gives us a feeling of purpose.

Interestingly enough, those two feelings are more similar than you’d think (at least, their origin is the same). It’s the same thing as the fear of the unknown: as children, we don’t know which way is left, let alone why we’re alive or whether or not a particular activity we’ve never done before is going to be scary or harmful. When we’re adults engaging with routineness, we can comfort ourselves with the simple idea of “I know how to do this, I’ve done it before.”

Brianna Wiest

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[T]here is something very different about how autistics react to novel and familiar things.  There is something very different about their preference for, and reliance on, repetition and routines.  But it’s not that they’re rigid while everyone else is flexible.  Neurotypicals are so inflexible that they insist on their social rituals even when it would jeopardize others’ safety.

Neurotypicals misunderstand other people, and inadvertently treat each other badly all the time – often in more damaging ways than autistics do.  Neurotypicals can be more rigid than any autistic about the rituals that matter to them.

The difference is that autistics and neurotypicals misunderstand other people in different ways and are inflexible about different things.

Because autistics are in the minority and sometimes lack the ability to explain or advocate for themselves, their way of misunderstanding and being rigid has been pathologized, while neurotypicals’ has been ignored.

Emily Morson

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[…] can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling?

Alyssa Hillary

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Autistic people don’t all have a convenient love of tedious tasks everyone else hates. Some of us have the audacity to want jobs others want.

Ruti Regan

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(Under ‘Leadership/Management’)

How many times have you heard that you need to get the big picture? Or that you feel like you didn’t have the big picture? I’ve heard this phrase repeated too many times to count and each time I do the thought that runs through my mind is this: what exactly is the big picture and how can I get big picture thinking?

The fact is that the big picture depends on your point of view. I don’t believe anyone can truly have the big picture (serious emphasis on ‘big’) because it’s not possible to see the infinite number of influence points involved. In fact, the bigger the project, program or issue the more difficult it is for anyone – even the leader at the top – to have the big picture.

Christian Knutson

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They are fully aware of their entire environment. We are talking about a multifocalized attention.

Whilst the attention of a neurotypical individual only focuses on one point at a time.

People with this multifocalized attention are hypersensitive and perceptual. Thus, they have the ability to perceive the overall picture of a situation including all of the details, even those that usually go unnoticed for the majority of people. Therefore, it is extremely difficult for them to perceive only one thing at a time and to concentrate on it, if there is no relevant interest in doing so. […] These people perceive the global nature of their environment in a very complex way. They are sensitive to ambient noise, light, people’s movements, etc. They see and feel everything, constantly.

Out of context, Mélanie Ouimet

(translated by Tanya Izquierdo Prindle)

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Consider which two of these objects go together: a panda, a monkey and a banana.  Respondents from Western countries routinely select the monkey and the panda, because both objects are animals. This is indicative of an analytic thinking style, in which objects are largely perceived independently from their context.

In contrast, participants from Eastern countries will often select the monkey and the banana, because these objects belong in the same environment and share a relationship (monkeys eat bananas). This is a holistic thinking style, in which object and context are perceived to be interrelated.

Nicolas Geeraert

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There is a set of powerful visual learning tools used in schools, universities and workplaces all over the world that can help us better organize our ideas. […] thinking maps are a rich resource when it comes to creative analytical thinking processes. They help us visualize even the most complex ideas and make them tangible.

Orana Velarde

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I’d like to ask if we’re really more vulnerable to everyday emotional and physiological challenges or if we’re tired because we’re dealing with more of them. While I ask, I’d like to see how many neurotypical people can function while walking on an untreated broken foot. I’d also like to ask how many neurotypical people who unexpectedly found themselves unable to speak 10 minutes before they were scheduled to present at a conference would still present. Not more vulnerable than y’all, just dealing with more nonsense.

I think saying we are unusually poorly equipped to deal with certain challenges (lower threshold) and have fewer innate coping strategies is a simplification at best and wrong in places. We wind up getting into trouble more, that’s definitely true, but how would you cope in an environment designed for how I work? It’s often about mismatches.

Also, we have plenty of coping strategies. Noping out of bad environments (avoiding them) is an effective strategy when we’re allowed to use it, but it often gets called eloping because for some reason y’all want us there anyways. Covering our ears is a semi-effective way to deal with loud. Those things that get taken as signs that we’re getting dysregulated […] are often actually ways that we stay regulated, and that realization could (but only partially did) lead to the conclusion that we’re not so much short on coping methods as disallowed from using them.

Alyssa Hillary

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[P]lenty of people make choices that others would find terribly limiting – not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities?

Restless Hands

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Some people might be better at certain things, we even call some of those people ‘geniuses’. But their ‘intelligence’ is the product of a concept of the time and place they live in. It is possible that, in another time, in another place, their ‘intelligence’ would not be ‘superior’.

Amy Sequenzia

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Categories
Positions

Acceptance

Major concept: Neurodiversity

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Kindness without respect is worthless

Erin Human

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Just like you shouldn’t force people to be proud of their autism, you shouldn’t force people to be ashamed of it either.

2Pacula_Was_Taken

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Now if we could only get the rest of the world to calm down and not stereotype [my son], we might get some serious quality of life improvements and more stress-free community inclusion going forward.

Mrs. Kerima Çevik

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Acceptance is not
giving up […]
doing nothing […]
what happens after you’ve fixed someone to your liking
[or] throwing away all rules, manners, education, skills and coping strategies.

Cynthia Kim

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Neurodiversity isn’t about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It’s about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens.

Shain M. Neumeier

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Most parents are scared, insecure, unsupported and exhausted. […]

As autistic adults, we say that we are the real experts on autism by virtue of our lived experience. By the same logic, you can’t claim to be an expert on parenting if you’re not a parent. […]

Parents, in turn, don’t always listen to autistic adults as much as they should and thereby miss out on some very valuable insights.

Maura Campbell

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Growing up autistic in a world made for non-autistic minds is difficult. Then again, so is growing up lefty in a world made for righties.

It’s not better or worse – just different. Families with lefties, women, people of color, LGBQT, and kids with disabilities love each other exactly as they are and wouldn’t trade them for a child who has an easier path ahead. Raising a child on the autism spectrum has its challenges, but so does raising any child. All of us will have our obstacles.

Ashia Ray

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I come down, on the whole, firmly on the side of the self-advocates; I think it is critical to listen carefully to what any marginalized community says about their own experiences.

At the same time, I think they sometimes forget that many parents do not have the tools or the ability to build a fully autism-friendly life for their children, and that some compromises simply have to be made (as much as I hate them) at this point, in order for an autistic child to be integrated into our terribly narrow-minded society. […]

Restless Hands

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When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children’s fault. We need to handle their privacy with delicacy. And we shouldn’t accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn’t. We, our kids, and our families need different supports than families whose kids don’t have disabilities, and we often need a lot of them. Sometimes we’re not always sure where to find those supports, or even aware of available supports; sometimes we’re ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let’s talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever. […]

Shannon Des Roches Rosa

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You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.

Emily Paige Ballou 

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For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.

For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at important events, and family members a reason to question our sanity and criticize our parenting skills.

My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was ‘fine, thanks.’ We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.

Ashlyn Washington

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