nonspeakerlibrary

[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

[nonspeakerlibrary]

A presentation that Matthew McGrath gave for a national autism conference in Canada.

I wrote this video to teach people that nonspeaking autistics deserve to be heard. Please watch and learn about us.

trigger warning: sexual assault

[nonspeakerlibrary]

Jackson Khabra , a nonspeaking teenager, gives some tips for interacting with people who spell to communicate.

DO allow me to be the first person to communicate sometimes. I love when you ask me questions but sometimes it is nice for me to lead the communication. I always have a lot on my mind, so it is amazing when I get to share that with you. What that might look like is: you approaching me, saying Hi, and just waiting to see if I have something to say. Nothing says “let’s chat” better than a warm smile and an invitational silent moment. This dovetails nicely to my next point:

DON’T be afraid of awkward silences. News flash – they are only awkward to you. For me, as a speller, silence equals opportunity to get involved in the conversation. Silence means inclusion for us. Without that key ingredient, honestly there’s no point even trying.

DO look at me while I type (spell). There is a logical reason for this. You may not realize this but a great deal of the meaning of speech comes from how you say something. This is quite obvious to us as we are unable to speak and provide context in the same way you do. We do provide plenty of context in different ways. How we do this is subtle so pay attention while we spell to get the full meaning of what we are saying.

[nonspeakerlibrary]

A song written by Damon Kirsebom for Boards and Chords, a music festival for nonspeaking songwriters. The lyrics are such a fun amazing letter to ‘autism professionals’ who make money dehumanizing us!

[nonspeakerlibrary]

Communication is the cornerstone to autonomy and participation in life. It is a human right. It is the humane thing to listen and allow all to have a voice. I suppose the word choice of voice is more metaphorical for us nonspeakers but that doesn’t make our words any less valuable.

As a society, there is so much value placed on speech. It is used as proof of intelligence. It is a priority for many in this fast paced world. Rushing through stories with phrases like “long story short”, while the listener is too busy thinking of their response to truly listen to the speaker.

Spelling to communicate may be a long and arduous process but it forces those around us to slow down to hear our words. It allows us to be extremely intentional in our word choice and message. It allows us to communicate effectively without a need to just fill the silence with unnecessary noise.

This is not to say that speech lacks value but it is overrated. It isn’t a requirement for communication or intelligence. Our words hold value even if they are spelled out one letter at a time. Hear us and value us even without the use of our mouths.

[nonspeakerlibrary]

Hari Srinivasan , a minimally speaking autistic neuroscientist & advocate, writes about the daily infantilizatiom disabled people face.

The irony is that the person at the other end thinks of their action as well-meaning, kind, benevolent, or perhaps even an act of much-needed charity. Under the charity model of disability, disabled individuals are seen as passive recipients of charity and pity, rather than as potential active participants in society. In fact, even as I was at dinner at a restaurant recently, an older male, sitting at the next table, walked up to our table and sidled a dollar note across the table in my direction, and said “I want you to have this. You are such a blessing.”

In that one moment, I had been reduced to a charity case; an object of pity; with the few dollars doled out serving to ease the conscience and boost the sense of feeling good by that other person. But I am left to walk away feeling I am worth less than the ant crawling on the ground near my feet. Disabled autistics like me face these types of microaggressions every day from all manner of folk. This cognitive dissonance between our capability and how society treats us affects our mental health and hinders our personal development and potential for growth.

I dare dream of a society where we all are valued and can live a life of dignity. I dare dream that I can live in a society that is accepting and supportive of both diverse challenges and diverse abilities and contributions of every individual. I dare dream that together we can create lasting change where we can all feel we belong.

[nonspeakerlibrary]

As a full-time university student it certainly takes many supports and accommodations to sustain my success academically, socially, emotionally, and physically. The fact remains---I have autism. And, the fact remains---I am worth it.

I have relished attaining higher education and learning from professors like Dr. Itkonen and being a part of the conversation not merely the topic of conversation. It is a lonely experience being treated like a ghost, being spoken about in the third-person, and generally not having a voice in one’s own life. Can you imagine this? Now that I have a voice in my own life, it is my passion to be a voice for the voiceless---to challenge society to rethink autism. As I consider my story from both a personal perspective as well as a model for others to observe, I realize its unique importance. Although I tease about being a unicorn---a mythical creature that legends are made of---I hope my story will not be such a rarity in American society.

[nonspeakerlibrary]

Let’s be clear. Having or being presumed to have multiple significant disabilities grossly circumscribes the opportunity and agency of millions of people to use reading and writing to define and pursue their lives. Because of the past and current research in the field, this above all is clear. But – and this is important – disability should not continue to be misconstrued to justify consigning those needing AAC, as infants and toddlers, public school students, teenagers, working age persons, and older adults, to having or being treated as having few literacy skills – regardless of when they became disabled.

Literacy is essential to freedom. The costs and consequences of being illiterate are gruesome and are spiraling in the digital age. This is especially true for those who must spell out what we say.

[nonspeakerlibrary]

https://autisticwhospells.com/2021/05/26/meet-my-good-friend-josh-wong/

Some words from Josh Wong, a nonspeaker who learned to spell with RPM, on autism acceptanceand healthcare for nonspeaking autistic people.

Lean In

Autism is a hell of a thing. I should know, I have lived with it for nineteen years. It’s not easy sometimes to accept myself, let alone have others accept me. But autism is my gift, a gift that allows me to navigate the world in a unique way. People don’t have to be afraid of the unsure or unusual. Lean in to me, there is a whole world I can show you. Acceptance will guide the way.

Autistic Health

When many think of autism, they think of the brain. Often overlooked and misunderstood is the body. My brain and body don’t really connect well. I want my body to do lots of things but it rarely cooperates–that is very frustrating. It’s not just this disconnection that is misunderstood but also other health concerns. For most of my life, I haven’t been able to communicate my body’s aches, pains, or cramps. Thankfully my mom is very intuitive and managed my health well. I am one of the lucky ones. Most autistic health problems go untreated and undiagnosed. My hope is that we can make systemic changes to the health system to promote better care for people with disabilities. This must also accompany the presumption of competence and the acceptance of alternative communication. Together we can be the change.

[nonspeakerlibrary]

A keynote speech that Sharisa Joy Kochmeister gave at a conference in 1997.

I compare dyspraxia to inertia. Inertia, as I understand it, is inability to move unless something else makes it possible. I easily relate to this. Dyspraxia is best defined in laymen's terms as an inability to make one's muscles do what one wants without great difficulty or assistance. Sometimes, it makes me "freeze in my tracks" or "forget" how to move, walk, chew, or swallow. It makes it difficult to do something as seemingly simple as nodding my head or shaping my fingers for sign language or walking downstairs alternating feet or using my eye muscles properly or my mouth, tongue, throat and facial muscles to speak clearly.

For most of my childhood years, I was, to even the most "objective observer," a failure at being "human," as defined by societal standards and medical "norms." Unfortunately, these standards and norms were designed by and decided upon by verbalizers for verbalizers, and are not remotely applicable to 'non-verbals' who have no other method of communication available.

Given all of these injustices, failure is the only guaranteed outcome -- a failure in this case that results in a verdict of "brainless," and a completely unjust sentence for the poor person being 'tested" of life-long imprisonment in the world of the 'hopelessly retarded." There are no "pardons" or "clemency" available, but in exceedingly rare instances, even these "living-death" sentences have actually been "overturned" because "new evidence" has finally "come to light."

Let me explain in the most personal of terms. I did not immediately magically become or start getting treated as "really intelligent" when I suddenly became "able to type." I had to attain "genius level" results on a wide battery of tests and "scales" in a variety of settings with different "examiners" from different "disciplines" before most of these people "in power" were willing to give me "credit' for more than a "modicum" of intelligence and cognitive abilities.

I eventually succeeded at "proving" I am "human." Then (and only then), was I finally "rewarded" by 'them," not for merely "trying" -- I was required to 'succeed." Unfortunately, despite my success, I'm still frequently required to "prove" myself. Will "trying" ever be "enough" for me and others "like" me? It certainly doesn't seem that way!

[nonspeakerlibrary]

http://idoinautismland.com/?p=473

Some ‘skeptics’ and professionals compare nonspeaking autistic people who use support to communicate to Clever Hans, a horse who ‘did math’ by looking at his trainer’s cues. Ido Kedar debunks this comparison here:

Nobody questions the autism of people who type except for those who don’t believe that severely autistic people understand language. By their logic, if an autistic person types he can’t be autistic. This is circular logic.

My old ABA supervisor said exactly this about Tito Mukhopadyhay because he communicates by typing independently. He stims. He has every autistic symptom in the books but since he is obviously communicating sophisticated thoughts he can’t be autistic. Ha ha. What would his correct diagnosis be then, and why was he diagnosed with autism as a young child before he typed? It is intriguing that these particular professionals don’t question whether their understanding of autism is correct when someone with autism comes along who challenges their theory. Rather, they claim that it’s the person who is incorrect.

I’m an autism expert. I didn’t study it in class. I didn’t teach ABA to kids. I did however live and breathe it. I learned that experts and professionals can be well meaning but wrong. I learned that I, and others who type, have much to teach about the truth of the disability.

[nonspeakerlibrary]

https://inautism.wordpress.com/2022/06/21/the-life-worth-living/

A poem by Gregory Tino on nonspeaking autistic life has value and on fighting low expectations.

“Not intelligent” they all said.

Words that filled a heart with dread.

“No hope, no future, nothing good.

Nothing as a life that should.”

The parents heard these words of doom.

“Who are we to just assume

this gorgeous boy will have a life

filled with badness and with strife?”

The parents made a solemn vow

to give him love, and to allow

him to become what he would be.

He grew, and reached maturity

then came to do some wondrous things.

Could never know that life would bring

such love, such peace, such happiness.

Don’t assume that “they” know best.

Autism is a different life.

Yes, sometimes it is filled with strife.

But most times it is filled with good.

A life worth living as it should.

[nonspeakerlibrary]

"Our Lives, Our Choices, Our Rights!" is a guidebook from Rainbow Support Groups about understanding the lives and experiences of LGBTQ+ people with intellectual and/or developmental disabilities. You can find it here: https://rainbowguidebook.com/chapters/introduction/

[nonspeakerlibrary]

By Joshua Greiner, a nonspeaking autistic poet:

Autobiography

I have tried resurrecting images of human hope

I have tried into thinking of the kindness of your heart

I have tasted loneliness

I have hurt others intentionally

I have joined in groups of poets

I have surfed and felt cold

I have loved and felt loved in thinking of the friendships I truly have

I have hoped to speak and I have freed my voice through spelling

I have gotten hope despite giving up

I have kindness for silence in the trees

I have joked with my friends

I have great respect for women

I have read the classics and great poets

I have had too many donuts

I have gotten scared by bullies hurting my feelings when they try to take my safe place

I have internalized their voices

I have traveled the country to see family and friends

I have invented your goodness

I have heard doctors describe my brain

I have heard my mother believe them

I have internalized shame

I have heard trees opening their leaves to the breeze

I have treasured your eagerness in teaching me kindness

I have trusted and interested truth

I have treated others better than I have treated myself

I have used up the patience of my mother on some days

I have earned ribbons for races

I have hurt inside my heart

I have hope too

[nonspeakerlibrary]

A speech that Fox, a young RPM user, gave in front of a school board about education for nonspeaking autistic people.

Answering questions is not needed to learn. Hearing or seeing or touching is all that is needed to learn.

Autistics are stuck in a cycle of never learning new things. I found school so boring and ABA even more boring. Imagine learning colors, ABCs, and shapes over and over again year after year. Anybody interested in learning that way? Anybody think they would be happy and calm learning there? I find so much difference between how letter talkers and mouth talkers are treated. A mouth talker is always given an education at school, a non-speaker is not. Assumption that speaking is 99% of learning is incorrect assumption.

Learn to please be respecting of personhood of all Autistics. I am finding some people are so surprised how amazing I am as a person. Appreciate kind words however I always this way on inside I just didn’t have a way to show it. I am not a changed person, I am same Autistic boy I always was. Need to really understand that, it is important. Talk is amazing, thinking is just as amazing. Being non-speaking is a really scary thing sometimes. Thinking and feeling is how Autistics get through a day. Talking with letters I’m able to really finally have control over my life. I am talking everyday, thinking same as always.

[nonspeakerlibrary]

Many simplified AAC systems function less like fully developed languages and more like what linguists describe as pidgins, which emerge under conditions of unequal power and limited mutual understanding. As linguist John Holm explains, pidgins are not anyone’s primary language. They are simplified communication systems created to address language barriers when groups without a shared language need to communicate, often in contexts such as colonization or trade. Pidgins lack grammatical complexity, and serve very narrow functions, but they do become shaped by the communities that create them. In contrast, simplified AAC systems are often created by professionals and imposed on individuals with good intentions, but lack a community of users to support the system’s stable use. As a result, these simplified AAC systems risk isolating users from both dominant language practices and reciprocal social connections. This is especially a problem in schools, where already marginalized communication-disabled students are offered only a clipped version of the language in their community and are expected to join in the conversation. Without models for what successful outcomes look like, this isolation is incredibly challenging, yet it is often unacknowledged.

From personal experience, I know how exhausting it was to constantly translate my thoughts into the limited vocabulary of simplified AAC systems. I had to contemplate how to form a thought in my head, translate it from my restricted vocabulary into something relevant, and do it at the speed of everyday speech. With my increased stress and cognitive load in these scenarios, it often felt like I was working twice as hard, to say half as much. For AAC users, simplifying communication may actually require more executive function capability to produce meaningful utterances, not less, as is commonly assumed (Light & McNaughton, Citation2014; Wickenden, Citation2011). Building on that idea, Holm (Citation2000) explains how systems shaped under communicative constraints tend to rely on circumlocutions—which are indirect or roundabout phrasing strategies used when the right words just aren’t available. We often applaud AAC users who devise creative workarounds within limited systems, crediting their ingenuity as evidence of intelligence and adaptability—but what if the communicative barriers imposed by the system are too steep for others to overcome?

Witnessing similar others navigate challenges can create a sense of possibility and reduce self-doubt—yet for AAC users, role models are often few and far between, and geographically dispersed. While videos and digital media can help broaden access to role models, this is not enough. AAC strategies are deeply shaped by environmental context. To truly thrive, AAC users need visible models not just in age or ability, but across the real, dynamic settings where communication challenges arise. What is needed is not only representation, but immersion: a “follow me for a day” approach that shows AAC in action while navigating noisy lunchrooms, inaccessible academic materials, or rushed conversations.

Infantilizing is a common problem with disability, but how do you combat it? You must speak up, if you can, and do it quickly. If you sound confident and you hold your position, you may prevail. But how many times a day does this happen? How many words per day should be dedicated to correcting misunderstandings? Should an individual have to defend their personhood and credibility repeatedly every day?

[nonspeakerlibrary]

This poem expresses the deep and unyielding truth: my disability limits me. It is an unflinching message that I and many others reckon with internally, but often feel afraid to share. We are so pressured to be beacons of hope and inspiration, to make others feel better. And for much of my life, I have been told by ignorant educators that I am more limited than I actually am, so I am also reluctant to acknowledge my real limitations. It sucks. To put it more eloquently would be to sugar coat it. It doesn't mean that my life is hopeless or worthless or not full of beauty and joy. It is the unvarnished, grainy truth. And of course it gets me down. I am human and I feel disappointment and frustration. I don't need comfort, but I so need compassion. Those who know me are aware that I am generally a positive person. I love much about my life. My autism can truly be a wondrous experience, full of light and color and intelligence and mirth and profound feelings. And I hope that I can convey that acceptance of the challenging parts of my life is a part of truly acknowledging my existence in its totality, along with my many joys.