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 coproducer, 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.

How is that even legal?

FC was disproved long ago! We tried it and it failed for our deaf and autistic daughter--even though she could read at the time. Augmentative communication worked for her: Her first expressive word was "ibex" (a mountain goat)! LOL! Today, I would try PEC. Contact me through this site and I would be glad to share more!

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!
-Seth

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.

Teresa, I have twins in the exact same predicament. It took 4 years of going around and around in circles through the system, but one of them is in a residential treatment facility, and the other is scheduled to join him soon; they will be roommates and go to a special school designed for kids like them. I kept telling people in the system, "Yes, they are adorable, but what happens when they grow up and aren't 'cute' anymore?" Mine have other problems besides autism and were an immediate threat to their toddler-aged brother, and it still took 4 years to get them placed. The parents need to start now, because in a couple more years, he's going to start hitting puberty and will be impossible to handle. It breaks my heart, but I have to be ruthless with myself and admit that I can't take proper care of them--nobody can, outside of a 24-hour facility. This may not be the case with your grandson, but I would still raise the puberty question to the parents. They won't think it's cute when he starts breaking windows, punching holes in the walls, and attacking people. At this point, it becomes a criminal justice issue. Enough said. My heart goes out to you.

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!

Thanks alot for the good work. God bless you

Grandson is bored with school since he understands everything. He has been seeing and hearing letter sounds for 6 years but no speech. ESE teachers need this training! Maybe he will talk if he gets this help.

Deej, i live in the uk i wish to purchase your dvd i have a 13 year old non verbal son Jeorge...does the dvd have any regional restrictions on it? can i play it in the uk? many thanks xxx

thank you for this useful information. My grandson age 2.5 has been diagnosed and is non verbal.This gives us hope.

Your an angel. Thankyou

I just really loved this, so much. My son is 3, totally non-verbal, and what you're describing is already happening. He has a twin sister who does not have autism, but she is electively mute, believed to be making a conscious choice to stay silent because her brother doesn't speak. We, as parents, are always confused and we just have such a lack of understanding, "What exactly should we be doing here?" So, we kind of just go along with whatever whoever suggests. The special ed classes for children with intellectual disabilities...but does he really have that? Is there much more going on in there than we could possibly have a clue about?

DJ, I hope you read these comments. Thank you! You are amazing and although I don't have a nonverbal autistic child, he is a neurodiverse learner with severe adhd in which the school he attends attempts to segregate him. You have really opened my eyes to how important it is for all children to be mainstreamed. You are doing your job with advocacy. You rock.

Thank you so much for your insight. My sons were nonverbal and still struggle to communicate at times. One thing I took from me from my son's first eval/diagnoses . The psychologist told me "always assume intelligence " I took that to heart and work very hard with him. He was diagnosed severely autistic but now considered high functioning. Reading, writing, cooking and doing ADL he's a whiz in math and loves science. He does participate in mainstream along wth life skills classes. We are all different and have alot to learn from each other.

My son is dual diagnosed with Down syndrome and Autism. He's finally accepted Proloquo2 (to Go) language app on the iPad. Music therapy has done wonders! We've tried Gemiini app for years, but it's difficult to keep him interested. We know it works though! He's becoming more vocal with singing first through humming and catching the last words of the phrase out chorus. He's 11, so I know with continued ABA therapy he'll progress. School life skills class is an enduring process. Staff is not qualified to truly help my son if you ask me, but it's the only way right now to get the therapies that work through ARD. Private therapy has proved more unqualified therapists and companies who just love to bill insurance. We've been let down so often by those who are supposed to know how to help my son. We expect a lot from our son and those that have the credentials and experience. Thank you! I'll go look at your website and learn from your awesome perspective. Thank you for sharing!!!

I'm a father of a 43year old nonspeaking autistic adult and it has been very difficult to get the right programs for when they turn 21 of age.

That is so true!!!!!!! As an educator, and the parent of a child with a nonverbal disability, and it a major need in our society. Sadly, these students are being overlooked and isolated from the school and the general population. I have worked on reading, writing, and math concepts. Because of her ability to read and write, she has a communication.

I don't know if this will help anyone else, but our Jimmie learned to speak through the Music side of his brain. For years we sang everything to him, and he understood better. Eventually he learned to speak, mostly single word comments. He did learn to read, beginning with the PECs cards, and migrating to words and enjoyed reading a lot.

DJ - I am so impressed by you. I had no idea of the problems you address. Thank you for being a voice of augmented humanity, understanding, and respect.

I wish you all the best.

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