Welcome to the Autism Society of Florida Resource Page for families with Nonspeakers. Research shows about one-third of individuals with autism are not able to use speech to express their thoughts and feelings. Our goal is to provide you with information sources about important issues, starting with communication and regulation. Our resources will include books, films, research, and links to other reputable websites, and we plan to grow them over time. We want to help your nonspeaking family member live a happy, productive life.

 

Words Matter! Important Vocabulary  

 

We would like to share some important words that relate to Nonspeakers.

 

Nonspeakers

The term “Nonspeakers” includes individuals with minimal or unreliable speech.

 

Nonspeaking vs Nonverbal

Please use “nonspeaking” not “nonverbal.”  In Latin, the term “nonverbal” means “without words.” Nonspeakers have language, just not speech.

 

Assistive Technology or Augmentative and Alternative Communication

Any device that helps a Nonspeaker communicate is called Assistive Technology (AT) or Augmentative and Alternative Communication (AAC) whether it is high tech (such as an iPad) or low tech (such as a letterboard). Nonspeakers who type may use stencils, letterboards, iPads, and any of the various keyboards available for personal computers.  

 

Communication Partner

Communication partners have different roles for different typers. Some typers can hold their own Assistive Technology or have it on a table stand with or without a communication partner. Typing this way takes tremendous motor control. Most typers require a communication partner to access their AT due to their dyspraxia and dysregulation.

 

Dysregulation

Dysregulation is a life-altering challenge for many people on the autism spectrum. In particular, many Nonspeakers describe being in perpetual fight-or-flight, a physiological condition where the autonomic nervous system reacts as if it is under attack.

 

Dyspraxia

Studies show how most people with autism have dyspraxia, a disorder of planned motor movements. This is often described as a “brain-body disconnect” by Nonspeakers because they know what they want to say and do but their “uncooperative” bodies do something else.

 

Misinformation about Nonspeakers with Autism

Popular misconceptions about people with autism who cannot use speech for conversation:

• Nonspeakers are not intelligent

• Nonspeakers don’t understand what is said to them

• Nonspeakers cannot learn to type

• Nonspeakers cannot be educated in mainstream classrooms

• Nonspeakers want to be left alone and not have relationships​

 

Communication Resources​

Communication 4 ALL is a nonprofit with the mission to ensure all Nonspeakers have access to communication.

C4A Academy is a program of internet-based instructional videos that guide families and educators through the steps necessary to teach Nonspeakers how to type, free of charge.

• Instructional videos: This program teaches a communication partner how to coach a Nonspeaker’s body to type letters progressing from stencils to letterboards to keyboards in short step-by-step videos. 

• Written lessons: The instructional videos use written lessons with interesting topics to stimulate the brain while the body is being trained.

• Case Studies: See how Leon, a 6-year-old Nonspeaker, learns how to type his thoughts.

• Resources: Access to the stencil sets to get started, books, films, practitioners and more.

• Support: Families can find information and support in C4A Academy’s Facebook group and Ask an Expert.

 

Here are some FAQs about communication for Nonspeakers / minimal speakers:

1. How old should my child be to begin to teach them to type?

Communication 4 ALL can be used to teach Nonspeakers / minimal speakers from age 5 to 95. It’s never too late for a Nonspeaker to learn how to type.

2. Why do Nonspeakers need to be taught to type?

Nonspeakers need to be taught to type because they have dyspraxia. The same dysfunction that prevents them from speaking, prevents them from typing without being taught. They need to learn how to use gross motor movements to select the letters, first from large targets on stencils before moving to smaller ones on a letterboard and keyboard.

3. How does a family get started?

Go to www.communication4ALL.org for the C4A Academy instructional videos, case studies, written lessons, resources, support, and stencils you need to get started.

 

Regulation Resources

HeartMath Institute is a nonprofit with the mission to provide heart-based, science-proven tools, education, and training for managing regulation. Here is a short video about the science of HeartMath.

Polyvagal Institute is a nonprofit founded by Dr. Stephen Porges that is dedicated to understanding how the autonomic nervous system affects behavior and regulation. Here is a short video about Polyvagal Theory.

Regulation 4 ALL is a strategic initiative of nonprofit Communication 4 ALL to help Nonspeakers monitor and improve their regulation. The ultimate goal is to create an app that will glow red for fight-or-flight, green for safe mode and yellow when in between and recommend possible interventions that are derived from what is working for other users.

 

Books by Nonspeakers

How Can I Talk If My Lips Don’t Move? by Tito Rajarshi Mukhopadhyay (Author)

 

I Am in Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice
By Elizabeth M. Bonker (Author) and Virginia G. Breen (Author)

 

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
By Naoki Higashida (Author), KA Yoshida (Translator) and David Mitchell (Translator)

 

Ido in Autismland: Climbing Out of Autism’s Silent Prison
By Ido Kedar (Author)

 

Spellbound: The Voices of the Silent
By Judy Hope Chinitz (Editor)

 

Talking Fingers: Voices Of Indian Non-Speaking Autistics
By Padma Jyothi and Chitra Paul (Author)

Films Featuring Nonspeakers

SPELLERS asks, “What if we’ve been wrong about every single one of them?” and answers with the stories of eight Nonspeakers—Aydan, Evan, Sid, Maddie, Jamie, Vince, Cade, and Elizabeth—who all found their voice by learning to type. SPELLERS premiered at the Phoenix Film Festival in April 2023, where it won Best Documentary. You can watch SPELLERS for free on YouTube.

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Makayla’s Voice, a 2024 short documentary with many awards, shows the challenges and triumphs of a 14-year-old Nonspeaker who learns how to express herself by typing on a letterboard. You can watch Makayla’s Voice on Netflix.

 

Videos Featuring Nonspeakers

"Be the Light" Valedictorian commencement address by nonspeaking self-advocate Elizabeth Bonker that went viral with more than 4 billion media impressions.

ABC World News Tonight America’s Strong Feature on Elizabeth Bonker’s commencement address and mission to help Nonspeakers communicate

The End of Intellectual Disability? Nonspeaking self-advocate Dan Bergmann shares his experiences and advocates for people to presume competence among Nonspeakers.

LISTEN. Made by Nonspeakers advocating for inclusion in making films about Nonspeakers with the message: Nothing about us without us.

 

Research

United for Communication Choice: More than 300 peer-reviewed scientific publications related to typing to communicate.

Eye Tracking Reveals Agency In Assisted Autistic Communication: May 2020, Scientific Reports showing authenticity and agency for Nonspeakers who type on a letterboard

Motor Skills In Autism: A Missed Opportunity: January 2022, Spectrum discusses how motor differences impact how to access and support individuals with autism.

Is Motor Impairment in Autism Distinct from Developmental Coordination Disorder?: A Report from a 2020 SPARK Study showing 87% of individuals with autism have Dyspraxia.