Just an autistic!

Disablity diary and reblogs

[anautistic]

Blog for disability related posts with an emphasis on autism, developmental disability, and AAC! (augmentative and alternative/adaptive communication)

I find Assistive Technology as a whole to be very fascinating and love to learn more about it. I'm not a professional nor do I have any formal education about these topics, I'm just a guy with an interest.

I am a multiply disabled Autistic who has completely lost speech and I use AAC full time.

You can use he/him pronouns for me.

Respect my desire for privacy. I only share what I feel comfortable with.

"#📖" is for my own posts and for things I have shared.

I hope something good happens to you today! 🌞

[nonspeakerlibrary]

Authors Index A-Z

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

Tara Sayuri Whitty

[theravenflies]

Fun fact- when I was a baby, my parents pretty quickly started suspecting I had autism. Like, before I even hit the year mark. They got me assessed four different times. the first one was when I was a baby, and they're pretty sure the only reason their concerns were brushed off is because I was a girl, and most people thought girls couldn't be autistic. Two times were when I was a toddler, after I was talking and walking, because they noticed I was happier to sort my toys than actually play with them. Both times, that doctor (different doctor from the first) firmly decided I couldn't possibly be autistic because- get this- I started talking early. And the fourth one was when I was getting ready to start preschool, because they were really like "Okay, there's no way she isn't, the doctors must have been wrong." And again, they were told I wasn't autistic because if I was, they would know already. Since I wasn't already diagnosed, I clearly wasn't autistic. It must just be from my brain injury

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.

So no, I don't think not being professionally diagnosed means one isn't autistic.

[celsius451]

Phone calls custom AAC board

[withasmoothroundstone]

Always thought it was strange how people see some Autistic people's attachment to objects as a sign of hollowness or not being able to fully experience life or whatever. From the inside, it feels like something that gives a lot of richness and joy and meaning to life, and ever since I figured out that not everyone has this, I've been so, so grateful that I do. (Same goes for intense interests and absorbing sensory experiences! I feel like the world is full of amazing things to discover!)

Yeah I know what you mean.  It seems like some people are hell-bent on making sure that autistic people’s lives, disabled people’s lives in general really, look as bleak as possible from the outside.  Either that or they just have prejudices that tell them it really is that bleak, and warp any perception of what we’re doing.  Because I feel the same way, like my experiences with objects, and sensory experiences, make my life better than they would be without them.  I mean I’m sure that if I were built in some other way, there would be some other thing that gave my life the same richness – if there’s one thing I’ve learned, it’s that life is infinitely rich and you can find richness in any area of life if you look hard enough – but as it is, it’s these things that do it, and they’re sure as hell not things that make my life empty and hollow.

[awn-network]

by Sara Luterman

Recently, Amy Lutz, a parent advocate, wrote an opinion piece for Spectrum News titled, Adults with disabilities deserve the right to choose where to live. I wholehearted agree with that sentiment. Unfortunately, the article that follows argues nothing of the kind. It is, in fact, an argument to return people with developmental and intellectual disabilities to institutions. These new institutions have organic-biodynamic farms, swimming pools, and fluffy pillows. They are, however, still secluded and subject to all of the abuses of Willowbrook and Pennhurst.

[anautistic]

Question: True or False? Willowbrook State School closed within a year of Geraldo Rivera’s 1972 investigative report that exposed terribl

^Link to Internet Archive capture of non-functioning link.

[withasmoothroundstone]

There's unwritten rules about being autistic.

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.

And that’s just off the top of my head. I can’t stand any of these, whether most other autistic people seem to accept them or not.

[withasmoothroundstone]

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.

[To read more click the link at the top.]

[chavisory]

Movement issues in autism and clothing: an underexplored feedback loop

Continuing my endeavor to get some of my more substantial threads off of Twitter and into more accessible format, this post is adapted and e

"As genuinely glad as I am that the sensory aspects of autism are much better recognized now than they used to be, I think sometimes they’ve become over-emphasized as far as what makes something better or worse for us. There is often a tendency to over-attribute to sensory challenges things that can be far more complicated or originate from a different aspect of autism entirely. I also think that sensory processing issues and other facets of autism like movement challenges and intolerance of unpredictability can be entangled and mutually reinforcing in ways that defy attempts to attribute them to a single cause."

[withasmoothroundstone]

People like me.

I realized recently that when I describe ‘people like me’ in terms of the way I process information, being highly sensing, and other things like that, people might assume I’m only talking about some subgroup of other autistic people.  But that wouldn’t be true.

There are autistic people I relate to very strongly.  And they come from every diagnostic category and every functioning label, because nobody has come up with an official category that defines my sort of autism.

But there’s other people I relate to very strongly as well.

There’s some people with intellectual disabilities, who are not autistic, but have similar processing issues to me.  They often are labeled as having a severe or profound intellectual disability, but some are labeled as having a mild or moderate one too.

There’s some people with epilepsy that is severe enough that they seize every few seconds.  This interrupts their sensory processing and cognitive abilities in a way that can resemble my sensory and cognitive processing issues.

There are people whose only diagnosis is various sensory processing disorders, whose experiences can resemble mine, although this seems to be a bit rarer.

There are people who have had strokes or brain injuries or dementia who have very similar processing styles to my own, even if they didn’t before the onset of their condition.

So basically, when I talk about 'people like me’ in terms of sensory and cognitive processing, I’m not just describing a group of other autistic people.  I’m describing a wide and diverse group of people with disabilities, that have somehow led their brain to process things in a manner extremely familiar to me.

When we meet, we often click instantly.  I have had conversations across the room with strangers who were 'like me’, while staff looked on and saw no communication at all, because they didn’t know how to recognize non-standard communication.  And those moments of communication with total strangers, undetected by staff, sustained me for a long time when I was quite lonely.  The strangers were not always autistic, but they did always have a cognitive disability of some kind.  Some of them could speak and others couldn’t, but all of us could converse without speech, in ways that were instinctive rather than learned.

[chrome-barkz-aac]

i have a new AAC finally! it’s all set up now phew

[tboy-cock]

i understand that having a disability leads to a lot of situations where you have to accept that you just can't do some things. and i dont mean "and then you do it anyway" you just Cannot do it at all due to your disability. but this shit sucks man

[withasmoothroundstone]

Doctors think that they are the smartest people in the world but they are not. They think that they know it all but they don't. They think they are God -- but that job is already taken. They need to learn that the world is supposed to have all sorts of people in it. In nature there isn't just one colour of rose. Why do doctors seem to want to make only one kind of person? They have made me feel like one of an endangered species. They want only people who are strong and smart and swift. There is a sign at the entrance to the gene pool "No Dummy's Allowed." I remember the Bible saying that "the meek shall inherit the earth" but I'm afraid that we may not even be allowed to inhabit it.

Astra Milberg, Of Mice and “When?”, In: Difference: a little book about diversity. She’s a self-advocate with Down syndrome discussing the use of genetic research to prevent genetically disabled people from existing.

[anautistic]

Part Time AAC Users

This will be my first blog post specifically about communication, and I have chosen to write about something that has bothered me for quite

From Lance McLemore (@loudlampman on IG), an autistic AAC user with severe apraxia. Excerpt: "Speech impairment exists on a spectrum like blindness or deafness. There are many reasons why a person could have significantly impaired speech: autism, cerebral palsy, stroke, traumatic brain injury, ALS, Rett syndrome, etc. I’ll use myself as an example. My speech is impaired due to severe apraxia. I understand everything that is said to me. I know what I want to say, but it’s very difficult to make the muscles involved with speech do as I wish. As a result, sounds come out distorted, some sounds are substituted for others, some sounds or words are dropped entirely, and suffice it to say, it’s a big mess to most listeners. I like to compare my speech to the electrical system in a house. Imagine that an electrician wired your house with wire that was a smaller gauge than necessary. If too great a power demand was placed on that circuit, it would overheat and cause the breaker to turn off. This connection between my brain and mouth is fragile. I might be able to say a two to three-word sentence, but anything longer gets less and less intelligible. And I have to exert ever more energy to keep talking. After some time passes, my speech completely breaks down, most of my energy is gone, I can’t really concentrate on anything, and then I have to be left alone to recover.  I’m sure this sounds peculiar to the average person, and they have trouble relating. For the average person their speech is stable over time, and they cannot understand how speech quality could fluctuate so much.

I’ve tried to explain this to people, but it seems like it usually causes confusion and misunderstanding. I say to them, “I use a communication device because my speech is difficult to understand.” A response I have gotten is something like, “you can go ahead and talk. I’ll be able to understand.” It’s as though they see it as a challenge. I might try to explain the fatigue it causes me, but then I am seen as being too lazy to make the effort to talk. Believe me when I say that a lazy person would not use an AAC device. My remaining speech is not adequate to meet all my communication needs, and I know many other AAC users are in the same position. Please don’t give me and other people like me grief for using a communication device. There is a reason we choose to use AAC. It wouldn’t make sense to use it if we could just say it with our mouths. Communication is difficult enough already, so don’t make it more difficult with your erroneous assumptions.  You cannot assume that just because we might talk some of the time that we should be able to talk all the time. Remember that one application of AAC is to augment remaining speech. We shouldn’t have to stress ourselves out and push ourselves to the point of mental and physical exhaustion just so we can use a method of communication that is unclear and unreliable. I’m well aware that an AAC device makes people uncomfortable, and it’s often slow and awkward for the listener. However, we have to use the communication method that works best for us.

In conclusion, I have a few words for other AAC users who might be reading this. You have the right to decide how you communicate. Whether you choose to speak, type, gesture, or a combination of methods, you must do what is best for you. Don’t be ashamed of your communication tools, and don’t let anyone bully you into using something that diminishes your ability to communicate. If you find that speech is useful at times, then use it. And then at other times if AAC is better, then use that. I know it’s easier said than done, and I have to admit I still struggle with it. However, acquiescing to the bullies is worse."

(Emphasis mine.)

[iamthestrangerinmoscow]

The worst thing about ableist people who use functioning labels is that no matter what your unique set of skills, needs and challenges is you will be put into one of two boxes. You are either “low functioning” - inhuman, useless, dependent on people around you, the reason autism should be cured; or “high functioning” - special snowflake, faker, complain about nothing, too sensitive and just need to grow up. It is the ultimate weapon to silence our voices and take away our freedom, and it’s incredibly scary.

[nateconnolly]

Blackout Poem Made of Disability Benefits Applications and Denial Letters:

[Image ID: A blackout poem. The edges of the black are straight and rectilinear. I will indicate breaks in the line using the slash symbol /. Some of the excerpts include boxes where you could draw a check mark. I will indicate these by writing (box). The poem goes

Answer every question. / Please tell us if you want us to return them to you. / Select the heaviest weight lifted. / Using fingers to touch, / (Box) One hand (Box) Both hands / Using hands to seize, (Box) One hand (Box) Both hands / reduction / refusal / Termination / Penalty / You can give us more facts to add to your file. / You do not meet with the person who decides your case. / Notice of Decision — Unfavorable / Disabled worker’s name / Date given when disability began / Date of death. /end ID] 

The final three lines are from denial of benefits paperwork for workers who died before the end of the mandatory five month waiting period. How many of those deaths are connected to poverty? I don't know, but I can guess.

[autisticadvocacy]

See Us. Hear Us. | CommunicationFIRST

People with Communication Disabilities Speak Out Digital Storytelling and Advocacy NEWS FLASH! On February 15, 2023, the See Us, Hear Us Campaign won an Anthem Award! See details here. The See Us, Hear Us Campaign aims to elevate the voices, perspectives, and unique experiences of the millions of people in…

CommunicationFIRST’s See Us, Hear Us campaign aims to elevate the experiences of the millions of people in the US who cannot rely on speech alone to be heard and understood, regardless of disability or condition. Find the first videos of the series here: https://communicationfirst.org/see-us-hear-us/