Just an autistic!

The thing that’s striking about that debate.org thread isn’t that they’re saying we’re garbage or animals. It’s that, when I look at it, there’s so very little substantial difference between those comments and what I’ve heard tenured professors say in class, or in published writings.

(“Pancreatic cancer will kill you in a year, tops. People with autism linger on for decades. Think about the financial ramifications.” - paraphrased from a neuro professor)

(“There isn’t an arguement to make. They don’t offer anything to society, they are a massive burden on their caregivers, they are incapable of supporting themselves and their very existence is unsustainable.” - Debate.org commenter)

(“A developmental disorder that strikes at the heart of that which makes us human: our ability to love, laugh, and encounter others.” - John Ratey.)

(“They aren’t even alive.  To me a human is a person with the ability to think all that that entails. A mentally retarded person cannot think and are therefore not living full lives.” - Debate.org commenter)

(“It’s as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values. […] "Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to.” - Bryna Siegel)

(“Inventions like tool use, art, math and even aspects of language may have been invented “accidentally” in one place and then spread very quickly given the human brain’s amazing capacity for imitation learning and mind reading using mirror neurons. […] I suggest, also, that a loss of these mirror neurons may explain autism — a cruel disease that afflicts children. Without these neurons the child can no longer understand or empathize with other people emotionally and therefore completely withdraws from the world socially.” - VS Ramachandran)

(“Their very existence is a spit in the face of the marvelous achievement and identity of the human race, to advance, innovate, and appreciate and revel at the beauty of the universe.” - Debate.org commenter)

The difference is in the phrasings, not the substance. And what do we do with that? What can we do with that?

I mean I know love is the only counter to this kind of hate, it’s the only thing with the power to get through it:  Miss that at your peril.  Hating back won’t help, it’ll just create more hate.  But the love has to be directed a specific way, it can’t be just random love, it has to be love with a purpose, love in the service of certain ideals, love doing something, active love.

And I don’t know where to aim it, or how, but I will never give up, because the stakes are life and death and I have already paid one too many times.  I might not get another chance if they try again.

Anderson’s death is not an isolated incident. About a year earlier, Robert Bodack, a 42-year-old nonspeaking autistic man from Florida, died after being left for hours in the vehicle that was transporting him to his day program. Those like Bodack and myself who are nonspeaking autistics are especially vulnerable in such situations, because we cannot easily advocate for ourselves. Not only can we not cry out for help; most of us lack the fine motor skills to undo seatbelts or unlock car doors.

We nonspeaking autistics are often treated as disposable pieces of humanity—people who, it is imagined, do not suffer like other human beings. This long-standing failure to recognize our humanity is fundamental to the mistreatment that we receive from the so-called normal world.

I remember when a teacher yelled at me because I could not answer the question via a PECS card. It made me feel stressed and upset. I was six years old and it happened all the time.

I require a communication and regulation partner to help me voice my thoughts. They help me regulate by supporting the letterboard. They support the letterboard to aid my physical limitations and to help my motor planning. They change letterboard colours and stencils as it provides more stimulation and gets me back on track. My favourite letterboard colour is green because it is easy to see and it makes spelling easier.

also you are never going to be safe for people for whom english is their second language. if someone clarifies their meaning and apologises and you can't accept that over the original wording then don't bother pretending to be autism friendly.

and like part of my autism is that i become convinced that the way i interpret words is the way that they're meant. my autism is disabling to my communication abilities. i have poor emotional regulation, i jump to conclusions. a lot of my reactions are informed by prior negative experiences. i can and probably have been overly defensive in the past.

and i've been misinterpreted so much and had my words picked over and mocked for saying the wrong things and mocked for being unable to say anything at all and it always feels devastating. it's ironic that the same disability that has me treated poorly would have me react poorly to a similar situation, but that's just how it is.

you have to shrink your page set's grid size! here is a tutorial with a test page set ;

ID: Four rectangular cards with a white background and black text stating verbality and hearing status. The first line is different for each, but all say I can hear you, I use a communication device, please be patient, I would like to cooperate. Beneath the text is a crossed off mouth, a checked ear, and a communication device with a speech bubble coming from it.

The first says I can't always speak, the second says I can't speak, the third says I am mute, and the fourth says I am nonverbal. End ID.

I'm making versions that are the same but say hard of hearing and deaf, but for now here are the hearing ones. Made to print out and attach to the top of a driver's side window so when you pull over you can tap the card and the person outside of the car can quickly/easily understand your access needs.

Been extremely helpful to have on the inside of my window. "I want to cooperate" is specifically for if/when a cop is involved. Also helpful for toll booths, construction workers, and people who are pan handling.

in case you want to find a post by someone specific or remember a name. i will try to update this as more links are posted

Nonspeakers

Anne Abbott

Adam Wolfond

Alexis' Voice

Alice Wong

Amy Sequenzia

Anantha Krishnamurthy

Anne McDonald

Ben Breaux

Ben Crimm

Ben Kingston

Ben McGann

Beth Moulam

Bob Williams

Bri Guerra Cal Montgomery

Cayden Rainey

Cristian Rosas

Damon Kirsebom

Danny Whitty

David Teplitz

DJ Savarese

Donnie TC Denome

Dillan Barmache

Emma Budway

Emma Cladis

Emma Studer

Emma Zurcher-Long

Eugene Marcus

five-thousand-loaves-of-bread

Fox Talks With Letters

Graciela Lotharius

Grant Blasko

Gregory Tino

Hari Srinivasan

Henry Frost

Himani Hitendra

Huan Vuong

Ian Aronow

Ido Kedar

Isaiah Grewal

Jeremy Sicile-Kira

Jordyn Pallett

Jordyn Zimmerman

Justice Killebrew

Julia Griffith

Kaishawna Fleming

Kate Caryer

Liam Paquin

Luke Verhoeff

Matteo Musso

Matthew McGrath

Max Eati

Mel Baggs

Mike Hipple

Mitchell Robins

Nick Barry

Nick Pentzell

Nicolas Joncour

Nicolaas Paulsen

Niko Boskovic

Noah McSweeney

Noah Seback

Otto Lana

Patrick Saunders

Phillip Reyes

Rachel Kripke-Ludwig

Rhema's Hope

Richard Attfield

Riley Grace Miller

Roses are Red for Autism

Samuel Capozzi

Saoirse Tilton

Sharisa Joy Kochmeister

Sid Ghosh

Sofi Ghassaei

Steven van der Ham

Sue Rubin

Swarit Gopalan

Tejas Rao Sankar

Trevor Byrd

Tuttleturtle

Typer Tremblings

Tyrone Cook

Speaking Authors

Edlyn Peña

Kerima Cevik

Rosemary Crossley

Shannon Rosa

I am level two autistic. I am visibly autistic and always have been. And I still got misdiagnosed as not autistic four times for complete nonsense reasons.

Some of those unwritten rules even end up adopted uncritically by large numbers of autistic people, or propagated among autistic people like some kind of toxic wildfire. Others end up near universally loathed by autistic people.

Some examples (of both kinds):

• Stimming is always unconscious. • Stimming is always intentional. • Stimming is always stable over time in one person, so if someone is rocking at one time and another time sitting still but wiggling their fingers, something’s wrong. • Stimming is a thing at all, as in one thing with a particular uniform definition. • Autistic people’s abilities are the same over a lifetime. • Autistic people’s abilities gradually improve over a lifetime, or suddenly improve in fits and starts, but definitely improve. • The only time autistic people significantly and obviously lose skills is in infancy and the only people that happens to are more severely autistic than other autistic people. • When autistic people lose skills, they never are gaining skills at the same time that people don’t notice. • Autistic people never lie. • Autistic people are not subject to the same cultural forces other people are subject to (so if you hear an autistic person humming, be shocked if it’s in the same musical keys the rest of their culture uses). • Autistic people never forget anything. • Autistic people have one consistent pattern of abilities across their entire lifespan. • Autistic people’s greatest areas of skill are always noticeable. • Savant skills are always noticeable. • Savant skills are always utterly spectacular.

They didn’t know what was wrong but they were worried. Their son had become remote and uncommunicative. “He’s just not himself.” Describing their son in words typical to parents of kids with Down Syndrome, “He’s normally a happy, loving kid. We hadn’t expected him to go through a teenage rebellion period but, what the heck, he’s allowed. Then we realized that this is something different. Something darker. We’re worried about him.” The 15 year old boy was just as his parents described. He didn’t seem troubled, he seemed burdened. He glanced over at me and it was as if he was looking at me from a long way off, not as if we were in a room together. But he was curious. He became present in his eyes. “How long you been in a wheelchair?” Somehow, I knew my answer mattered. I didn’t want to lie, but I really didn’t want to tell the truth either. Right now I wanted to identify with the chair. “A long time now,” well three years is a long time. “What is it like?” Truth. “I’m fine with it, others aren’t so good.” “What do you mean?” “Oh, you know, staring, laughing, a bit of bullying … that kind of stuff.” “Huh,” a non-committal sound. I thought I’d hit the mark and his sound let me know I’d missed. Damn that was my best play. “So how long you been ….” “Down Syndrome? I was borne …” “No, I know that,” I didn’t want him to think I was stupid, “how long you been upset like this?” “Since the show,” he said and made a face like he slipped. It took a little while but he gave in, I think primarily because he’d been upset for too long. He was tired of it all. He told me that he had been home watching television and he switched to a show that was about Down Syndrome. he said that they were talking about a ‘cure’ for Down Syndrome and he realized later that 'cure’ meant 'elimination’. That most parents choose to not have a child with Down Syndrome. That there was a future without Down Syndrome in it. He was devastated. For weeks he’s worried about it. About his friends with Down Syndrome. About his parents, did they have the test? Would they have gotten rid of him if they had the chance? He was scared to ask them. Scared about what their answer might have been. After all this, told to me in tone of upset and defiance even, ended in tears. He was afraid that he had slipped by the tests, that he wasn’t really wanted. He now understood exactly where he stood in the world.