Q&A: What Real Inclusion for Nonspeaking Autistic People Means

Too often, the rights of nonspeaking autistic people are completely ignored. Rachele Tardi, senior program manager for the Open Society Community Youth Fellowship, speaks with DJ Savarese, a 2017 Youth Exchange/Human Rights Initiative Fellow, about building an inclusive world.

Deej, a documentary that follows you through high school and the very beginning of college, premiered this fall. What do you want the film to accomplish?

I want the film to dispel societal stereotypes and misunderstandings and to promote inclusion—in family, school, employment, and community—for all of us who communicate alternatively. I’ve estimated there are as many as 750,000 nonspeaking autistics in America. The dominant culture’s production of autism is not my experience of autism. As the film’s subject, narrator, and co-producer, I try to unearth the discrepancies between the outsider’s perspective and the nonspeaking autistic person’s private insights.

What does “inclusion” mean to you?

I think you’ll see that, for me, inclusion means having a voice in one’s life. Nonspeaking autistic people rarely—if ever—do. Instead, they’re usually stored away like unwanted furniture.

What is one of the more harmful stereotypes about nonspeaking autistic people?

Our silence makes some estimate us as incapable, and soon we are left out of anything meaningful. Before I learned to read and write, people thought I had no mind.

Reading and writing are rarely taught to nonspeaking autistics. Presumed incompetent and denied training in literacy and communication skills, most of us are segregated in separate classes—or schools—for kids with disabilities, denied basic human rights, and later housed in sheltered workshops, group homes, and larger residential placements.

Much of your work addresses problems with the education system. What inclusive practices would you like to see become more prevalent?

First of all, we need teacher training programs that actually instruct teachers, not in classroom management and discipline skills, but in literacy-based instruction for nonspeaking people and other neurodiverse learners.

We also need low cost/high yield accommodations that can be used in inclusive settings to allow each student access to the regular curriculum. By linking strategies with specific kinds of nonspeaking autistic learners, my website will help teachers and parents identify the most efficacious strategies for their particular student or child.

There also needs to be a broader sense of literacy and language and the tools used to convey meaning. Some learners need visual bridges, such as photos and pictures, to become literate. Others need to touch the words, physically placing words in sentences like pieces in a puzzle. Others need to sign or draw concepts and words in order to capture their meaning. Still others may require the musical sounds and patterns of poetry to lure them into language.

Each path to literacy is an equally worthwhile journey; no one better than the rest. 

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Way to express what our nonspeaking folks are experiencing I have purchased both versions of your DVD and will be sharing with my son's group home in IC. They are almost clueless and less than cooperative up to now. But that is hopefully about to change with new mgr coming on board who is to address the unmet needs of my son and another nonspeaking YA in his house. They have a copy of the FC manual from SYracruse now since the June 2017 conference and one of his direct care staff attended the two day conference and now we need to put it into action!!! I will suggest we have an informal meeting with you and your mom in a few months once they have reviewed the teaching guidance materials I am so proud to say I have known you and your mom for several years and your accomplishments of a college degree. You are an accomplished young man at such an early age, keep going with your noble goal. You and Nate, and the other young adults are paving a path for others to follow, and I hope Kev will become a tag-a-long with the right support persons/system. We will have another eval with Angie, met her for one hr at the 2017 conference. Keep up the great work!!

I love your response! Great encouragement to all!

I have a family member who resides in Mississippi he is an excellent sports player however he has a speech and hearing impairment and wants to be a sports doctor. Mississippi doesnt allow childen with major disabilities to live on campus they only provide vocational training. I am interested in attending your conferences.

Thanks for writing this helpful information. Loved watching Deej, which is completely enlightening.

DJ, so humbled to have known you.
should you ever consider coming to europe particularly germany to show your film or need someone to help you find contacts here to talk about these issues ( which are certainly predominant here too! ) please do get in touch!

would love to hear from you regardless! great piece!

Does anyone know the location of the website that he mentioned as a resource to help teachers?

Hi, Seth. Thank you for your interest in the website. Creating the website is part of my Youth Exchange/HRI fellowship project, which just began in October, so it will be some time in 2018 before it's launched. The url is www.Listen2Us.net. --DJS

I had wondered if it was still in the works. Thank you for directing me to it and best of luck as you prepare to launch the site!

thanks for the enlightening descriptions of potential literacy needs, DJ. in Ohio, where i live, we really need teachers who are trying to structure literacy instruction for folks who do not speak to develop more appropriate rubrics for their students to demonstrate their literacy. using state requirements like phonics to measure the literacy achievement of a person who doesn't speak keeps teachers focused away from students' needs.

Deej- I am so excited, proud and humbled to see all you are doing! I'll be watching your project to share with the teachers I know up here in Minot, North Dakota. What you say is exactly true- in the time we've been here in this small state I've run into several families of children with autism who themselves don't fully realize what inclusion means. As you say, teachers need training and education in literacy and communication, not more behavioral strategies! You have much work ahead of you, and it is such important work- I'm so proud to know you and to share what you are doing with anyone who could benefit. - Your "old" Jennifer from Gainesville ;)

Deej, Thanks for your clarity and strong leadership. Hopefully we can get systemic change with your efforts so that, as you emphasize, people can no longer have a life of field trips based out of group homes, segregated classes and schools, and day wasting programs. Also echo earlier comment to check the Facilitated Communication manual out of Syracuse University, also known as supported typing now.

Thank you for this. I lived with a relative who has a non-verbal form of autism and he was certainly denied an appropriate education. It's frustrating in general but particularly so when the parents are too ill-informed to advocate for appropriate choices for their child.

Very proud of this young man and the work he is doing.
Inclusion does not mean putting those with alternative ways of doing things in institutions and treating them like they are special people. Why?? I hope this film will teach the world that people with disabilities are just like anyone else its just that they have a disabillity

DJ, you are so articulate and have, by telling your story, redefined how we understand speech and communication. I really hope the documentary and your other work spreads far and wide, and will do my part to share it with friends and colleagues globally.

We need future more 2 Our countries 2 here 2 the creation of the world music sounding as efforts.

Thank you for "speaking" out for non-verbal autistics. My son is a non-verbal 15 year old autistic & I have been fighting the school system since his diagnosis, just before he turned 4 years old, but so far they are still not doing anything to help with ANY type of communication services. All I hear from them is how he should be placed into an institution & as far as I am concerned that is not an option.

My 10-year-old son is nonverbal with no effective communication. It breaks my heart.

I am starring to see black children with this issue and I would like to unswrstabd it more.

Loved reading this and knowing that there is an advocate for our non-verbals. I am an educational assistant who works with a one on one autistic non-verbal kindergarten student. I will be attending a six week program starting next week to learn how to communicate better with her as well as finding out what learning works best for her. We have built a good relationship, she trusts me and I know she feels safe. I know there is an intelligent and sweet child who I know can go on to lead a productive and happy life so I am looking forward to this training, and am so glad to have read this article. I will be following your new website to learn as much as I can to assist my student. Thank you for providing a place for learning, assistance, and hope.

My non verbal nine year old third grade grandson is not learning a thing and he has an IEP at a public school. They say oh he is doing fine. He is not. He can't pay attention to a thing for 30 seconds. He can't function even on a three year old's level. He can't use eating utensils, brush his teeth because of sensory processing disorder, eat much of ANYTHING, food freaks him out in his mouth he wants mustard, tabasco sauce, stuff like that, he licks salt off chips, he needs so much more than the public school. His parents are failing him by not getting him into Heartspring. They think he's just going to be loved throughout his life and allowed to wonder around lost in his own little world. My beautiful, poor boy. They won't let me help because they say I am trying to take over. Someone needs to. He needs rescuing.

I am very interested in this subject. I teach a self-contained kindergarten classroom for children with Autism. All of my students have very limited verbal ability. One student in particular is non-verbal and uses a Novachat. He knows all of his letters and is really ready to move on to letter sounds and sight words. I first started asking questions of the speech and reading teachers the best way to go about teaching theses skill and no they were not sure. I have spent time thinking about the best way to present these skills. I have a plan, but I am looking forward to your resources!! Thank you.

Just watched America Reframed episode this evening. Incredibly enlightening story. I think you are doing what you set out to do - changing lives one story at a time. It reminds me of a quote by TobyMac: "Your story could be the key that unlocks someone else's prison. Don't be afraid to share it." Keep at it.

DJ, Thank you so much for all of your work. You are about to change the lives of millions of people around the world, and millions more, yet to be born. We need you so much.

deej, i really enjoyed your film and how gracefully you write. as a special education teacher, i have struggled to find effective literacy tools to use with my students, for whom the phonics-based approach is not useful. is there a way to keep updated on the progress of the listen2us website? or should i just bookmark and check back regularly? congratulations on your degree!

DJ, this article is so powerful and I'm more excited than ever for you to keynote our Rethinking Autism Conference in Evansville, Indiana on April 6-7! Your story is powerful and you have great potential to challenge many to consider that they have misunderstood the true challenges of those with nonspeaking autism. I'm excited to bring more awareness of the movement differences experiences by individuals like you as well as the strategies we are developing at Optimal Rhythms, Inc. that are helping students overcome the brain-body disconnect reported by so many who are now finding alternative communication outlets. Speech is motor, but motor is affected in so many with ASD. Language is cognitive and is supported by a totally different part of the brain. Therefore, many children develop language quite normally, but have a disability of demonstration (reliable motor output and speech). As a therapist and an educator, I know there is still so much for us to learn. Thank you for all you are doing to teach us!

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