Categories
Spotlight

Reverberations (Part 1)

Autism has taken over mainstream media to the point where people discuss Autism around the water cooler now.

Every parent wonders about it, every new parent fears it, schools need to be aware of it and anyone within the Autism community promotes it’s awareness.

Stuart Duncan

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Autism Spectrum Disorder is now among the most commonly diagnosed developmental disabilities […] A flood of professionals and programs has emerged to serve these children: physicians, therapists, schools, afterschool programs. There are karate classes and theater programs for children with autism, sports camps and religious schools and yoga classes. […]

Barry M. Prizant

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Autism is now part of the mainstream, whether you are autism accepting or looking for the cure, we are all pretty much in agreement that autism is a fact and everyone knows someone who knows someone… You get the picture.

Cheri Rauser

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My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

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Autism has become to disorders what Africa is to social issues, the celebrity cause du jour. […] Awareness of autism has seeped into the culture enough to make it a handy metaphor.

Caryn James

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Becoming an object of popular fascination is the opposite of humanizing.

Caroline Narby

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Talking about a disabled sibling: burden narratives and funny stories

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Pop culture’s more interested in disability as a metaphor than in disability as something that happens to real people. […]

Of course, in some sense, we all know what it’s like to feel self-divided, or alienated from the world […] Disabled characters are often seen as symbolizing the triumph of the human spirit, or the freakishness we all feel inside. […]

Christopher Shinn, Charles Isherwood

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Remembering that people with disabilities have always existed – Institutions, communities, and visibility

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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 1)

Question:

Why do some neurotypicals stim? Do they realize they are stimming?

They do. I don’t think they know they do, but they do. […]

Watch people overcome with emotion, an emotion that they can’t process, and they will stim.

Watch the news after a disaster or some horrible accident and you will see people holding their heads and rocking back in forth in grief.

Watch game shows when someone wins a big prize and look at their hands. Fingers extended, flat palms and shaking very fast in excitement.

Once you key into it, it is hard to miss.

Ben Rodda

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Kids love repetitive stuff. I used to work as a teacher assistant with 1-4th grade. Trust me with younger kids, if they like a video, they’ll see it 200 times in a row without getting bored.

LadyNoir93

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I know many adults without disabilities that enjoy child-like things like cartoons or toys. People with Intellectual and developmental disabilities are treated differently for liking the same things. It’s funny when I meet with non disabled people and they geek out over my little plushy wookies I carry as comfort items. It shows me that adults can enjoy things that children enjoy without people assuming that they are mental children.

Ivanova Smith

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The sheer amount of people who look at me and view me as ‘unresponsive’ when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as ‘response’. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as ‘responsiveness’. When those responses are not present, even if every other possible signal of response is happening, they view that as ‘unresponsiveness’. And they call us oblivious?

Mel Baggs

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I definitely know that lots of non-ASD people are terrible at judging how people with ASD are feeling.

If you just noodle around the Internet for a minute, you will find quite a lot of ASD people describing how someone thought they were nervous or sad when they were calm, bored when they were having a panic attack, uninterested in things they were actually very interested in, and so on.

In fact, sometimes police officers will harass or physically hurt people with ASD because they misinterpreted the person’s behavior.

Amanda Forest Vivian

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Hacking emphasizes that the divide between autists and non-autists is ‘symmetric.’ He attributes this divide to the fact that autistic people cannot intuit non-autists’ feelings and intentions, and vice-versa. “We are fellow humans in that we grasp each other’s intentions, feelings, and wants,” he argues. Because autists and non-autists cannot immediately grasp each other’s interiority, they see each other as alien. They do not share the “bedrock” of a common humanity, nor do they “share a form of life,” Hacking claims, borrowing two turns of phrase from Wittgenstein.

Hacking does ultimately try to gesture toward inclusion, and I do think that is laudable. However, I disagree with many of the premises of his argument, and I wholeheartedly reject the idea that autists and non-autists must be fundamentally alien to each other.

Caroline Narby

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(Why repeat lyrics?)

Seven time seven is 49. The pearl is in the river. Mr. Turkey is two times good for you. How much wood would a woodchuck chuck? I believe Fielding Melish is a traitor to his country. Badadada. Badadada.

Along with many many other stock phrases, these are integral parts of my thought process. Sometimes I say them out loud around people I am comfortable with. Each one indicates a type of thought and keeps me anchored enough in language to figure out what it is I need to say.

I suspect that NTs do this somewhat with songs, though they don’t usually respect or recognize these other forms. […]

Bev

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when I am feeling very bad, usually I’ll latch onto some song extra hard.

Noelle Stevenson

Is she NT? I don’t know.  Should it matter? It’s up to you.

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[…] folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it’s an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?)

Alyssa Hillary

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Words are but the vague shadows of the volumes we mean. Little audible links, they are, chaining together great inaudible feelings and purposes.

Out of context, Theodore Dreiser

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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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