Category Archives: nonverbal autism

Dillan’s Voice

My good friend, Dillan, is now a movie star and a spokesman for autism! He is helping to educate the world to understand the truth about profound autism. Here are his amazing films.

Way to go Dillan!

Words from a College Student with Autism

My good friend, Samuel Capozzi, wrote this fine and informative speech for the all-day conference on nonverbal autism held at California Lutheran University last weekend. I am delighted to share his powerful message.

Samuel gradI once read that “God often uses our deepest pain as the launching pad of our greatest calling.” I believe this is true in my young life. Good morning, my name is Samuel Capozzi, and I’m a freshman at Cal State Channel Islands
in Camarillo. I am also pleased to be on the board of Autism Society, Ventura County. I have a diagnosis of moderate autism, and I’m considered non-speaking and non-writing. I only began typing to communicate about four years ago. A lot has happened in that short span! As a matter of fact, my entire life changed.

My communication breakthrough happened in the middle of high school. At that time, I was unable to expressively communicate all that I was taking in, all that I learned, and all that I hoped to achieve. I was reading Dick and Jane readers and doing double digit addition at 16 years old. This was a dark, dark time for me. After more than sixteen years of silence, I felt like I might never be heard, like I might never be understood, and like I might be treated as a toddler
for the rest of my life. To say that my hope was realized in May of 2012 would be a huge understatement!

I think it’s important to know that I didn’t suddenly learn everything with RPM, I was learning all along. I’m thankful my mom read to me at higher levels and showed me educational videos. I also did a lot of incidental learning. It’s a very hard thing to be deprived of rich, age-level learning experiences—experiences most people take for granted.

Life changed when my faithful parents took me to Austin, Texas to learn RPM—the method I use to communicate. Needless to say, many tears were shed in the Capozzi home upon the realization that not only do I understand what is being said, but that I also have excellent reasoning skills and a keen sense of humor!

I decided to stay an extra year in high school to earn a diploma and to become a college-bound student. With hard work and many sacrifices by my loved ones and me, I did it! My favorite class was Latin, and I enjoyed taking the National Latin Exam. I managed to score Maxima Cum Laude two years in a row. My school challenged the students to “Do Hard Things”, so I did, but not only for myself. You see, I understand that my success is my misunderstood and marginalized peers’ success as well.

My remaining high school years were jam-packed with academics which I thrived on! I was even my Mock Trial team’s journalist. It was a whirlwind of an experience, as I responded unusually quick to learning RPM. My high school counselor and teachers were extremely excited about and supportive of my new found means of communication. This was so important as I ‘spread my wings’ in my new world of communication, conversation, and academics. My Latin teacher
took a real interest in my journey, and this made me feel so supported and encouraged. She even read Ido’s book out loud to her family! Just one teacher can make a big difference.

By God’s grace and pure grit, I graduated with honors and managed to take the SAT. Not only was arranging for the necessary accommodations difficult and time-consuming, but I also sat for the test for over 6 hours! So did my friend, Ido. Nonetheless, I am thankful the College Board was willing to work with us on this because I know it will benefit others who face complex communication challenges in the future, and hopefully some of you here today!

As our understanding of autism evolves and increases, I am optimistic that accessing an appropriate education won’t be as challenging for others who communicate differently.

I was accepted at all three universities that I applied to, including Cal Lutheran, and offered scholarships based on academic merit and community service. In the end, I chose Channel Islands because I believe they were the best prepared for a student like me. Go, Dolphins!

Since attending CI, I love learning, walking the halls of a university, and obtaining higher education. As I understand it, I am CI’s first non-speaking, non-writing student. I simply can’t say enough about Disability Resource Programs at CI. I am truly embraced, and my presence is celebrated on campus. It’s a nice change! What inspires me most is my professors’ delighted
responses and even shocked responses when they hear my cogent answers and read my strong essays. I hope to pioneer a path for other students who communicate differently that may come after me. Knowing this helps me forge on when I become overwhelmed!

Life with autism is challenging and difficult in ways most of you could never understand. So, my efforts in high school and now that I’m in college are hopefully not only for my benefit but also for the benefit of my peers and society as a whole.

Autism is now a big part of our society with the prevalence at 1 in 68 births. With what we know, now is the time to re-think autism and give it a new face. Yes, life with autism has caused some of my deepest pain; however, living victoriously with autism is also my greatest calling. I am profoundly grateful to have meaningful communication, and I hope that I have helped some of
you to better understand its importance for everyone.

Challenging and Changing Perspectives

By Edlyn Pena, guest blogger
As a researcher who studies ways to support the access and success of students with autism in higher education and a mom to a handsome six-year old son who uses an iPad to communicate, I aim to help Ido advance his message to educators, professionals, and caregivers. My objective here is to provide context and encourage you to learn more about approaches that enable nonverbal individuals to spell and type to communicate. I’ve received criticism for endorsing approaches like Rapid Prompting Method (RPM) because they are not evidence-based. There is still much speculation in the autism community about the legitimacy of RPM and other approaches that teach pointing to letters and typing. Research on these methods are lacking. I understand that professionals will continue to question these methods until they are rigorously studied and published in peer reviewed journals. I am the first to believe in well-designed research studies. As an academic, I also believe in being open to new possibilities, ideas, and presuming competence in individuals on the spectrum. Without this openness, I would have never exposed my own son, Diego, to RPM. He would not be where he is today with regard to sharing how autism affects him daily (e.g. “Paying attention is tiring”) and to articulating unusual ideas (e.g. “Eight elephants play in a new kind of ecosystem”). I would not know the level of depth of thought and curiosity hidden in his mind. Diego’s voice is now being heard.

Ido is a pioneer in advancing our knowledge about autism and people with complex communication challenges. Ido’s book, Ido in Autismland, is by far the most powerful book I have read about autism. Other authors write compelling books about autism, prompting us to think about those on the autism spectrum. But Ido is different. He is extraordinary because he changes the way we think about autism. He disrupts our misguided notions that lack of speech equates to lack of intelligence; that students with autism are impoverished of expressing or recognizing emotions; and that all students who are non-verbal belong in special day classes without the opportunity for inclusion. Contrary to many of the messages the world receives on a daily basis about people with autism, Ido’s book tells us that the minds of people with autism are as complex, creative, and intelligent as yours and mine.

On a personal level, reading Ido’s book was transformative and allowed my relationship with my son to turn a corner. I now talk to Diego like I would any other smart and capable 6-year-old. I make efforts to talk to Diego, not about him, when he’s in the room. Ido, Diego, and children like them are nonverbal, affected by autism, and brilliant. By typing to communicate, they blow us away with their complex insights, imaginative ideas, and witty humor.

If you are a professional in the autism field, I invite you to think outside of the box about what “conventional wisdom” on autism tells us. Without doubt, this takes courage. It means acknowledging that we do not know everything about autism. You might learn, as I did, that our perceptions about the capabilities of non-verbal individuals are wrong. Rather than dismiss RPM or other approaches to support typing, I encourage you to educate yourself about the approaches. Interact with individuals who have learned to type. Read Ido’s book or watch videos of children and teenagers who point to letter boards or type independently. For example,

https://www.youtube.com/watch?v=Wvn7kYJyOFM

And, of course, Ido has posted great video clips of him typing on this website. For example,

https://www.youtube.com/watch?v=ZLtQWXdDCFo

From one professional to another and from one parent to another, I urge you to take a chance to learn more before dismissing approaches to support our children who otherwise have limited means to communicate. We have the power to make real change by enabling the individuals we care for and serve to communicate in rich and meaningful ways.

-Edlyn Vallejo Peña, Ph.D.

www.EdlynPena.com
Assistant Professor
Graduate School of Education California Lutheran University

Story in the Times

I have been cooperating with a reporter from the Los Angeles Times, Tom Curwen, and a photographer, Genaro Molina, since last April. It appears in today’s Sunday Times. Here is the story.

How Do You Talk to a Nonverbal Person with Autism?


 Guest Post
By Tracy Kedar (my mom)
“High five, Ido,” the earnest young woman said, greeting my son for the first time as they were about to work together. “Uh-oh,” I thought, “bad start.” “Good job. High five,” she said to him over and over.
Ido has nonverbal autism and can’t speak. At that moment, due to the nature of the activity, he did not have immediate access to his letterboard or iPad, so he had no means to tell the nice, well-meaning young woman that he hates being told, “high five,” and “good job,” and that he hates being spoken to as if he were three (he is seventeen), and to please talk normally to him.
I thought, “Okay, say something now before this becomes a pattern and he becomes insulted.” As tactfully as I could, I mentioned to her that Ido doesn’t like “high five.” He wants to be spoken to normally. “But this is how I talk to everyone,” she replied.
Really? She goes to a party, walks up to her friend, or the attractive young man she wants to meet, lifts her palm and says, “high five” in that particular tone of voice?  She palm-slaps friends she passes at work, the cashier in the market, her doctor? I didn’t think so. Perhaps if she hung out exclusively with two year olds she talked to everyone like this. Otherwise, let’s assume she gives people with autism or other special needs, special communication. 
My son, Ido Kedar, is a high school junior, and despite his severe nonverbal autism, he is the author of a book, Ido in Autismland; Climbing Out of Autism’s Silent Prison, is a blogger, is an honors fulltime general education high school student, and is a frequent guest lecturer at universities and autism conferences. His vocabulary is huge, his intellect, fully intact.
Knowing this, or even a small bit of this, I had to wonder, why would anyone talk to Ido in this infantile manner? Why talk to anybodylike this? The answer is that many people with special education training have been programmed to believe that autistic people need speech broken down to simple components to help deal with the assumed receptive language or cognitive delay. Talking in this way is deeply habituated for many people who assume it is the right thing to do for every person with special needs. Otherwise, why say, “high five, good job,” instead of, “excellent effort. That was outstanding.” Hear the difference? Autistic people do too.
Recently, Ido had an unexpected encounter with a professional who spoke to him like this; “He knows I know he’s smart, right, bud? We’ve got a thing, right, bud?” Enduring a situation he found pointless and patronizing and which pulled him away from an academic class which mattered to him, Ido stewed and finally replied as an irate teenager would and typed, “F—  this.”
The question is, would this professional talk to any other high school student like this, let alone a high achieving honors student? We all know the answer is no. Professionals too often talk aboutthe person (“He knows…”) and not tothe person (“You know…”).  They talk in childish tones and reduced vocabulary. The message is, “I say I know you’re smart but I treat you like I think you’re not.” To which Ido says, “Enough!”
In his book, Ido inAutismland, Ido wrote in his essay, How I Would Have Liked to Have Been Taught,
If I could educate the specialists, the first thing I’d recommend is to talk normally to autistic kids. No more, “Go car,” “Close door,” “Hands quiet,” or the like. It’s stupid to talk this way. Some teachers used tones to make words more distinct or over-enunciated sounds, like “letter” made with a “t” sound, not a “d” sound like we use in America. They sounded so silly I often rolled my eyes inside. (p 55)
When Ido was little, before he could type and we didn’t know what was locked inside, we used to speak to him in this simplified way, as we had been instructed to by autism professionals. We went through a terrible episode when he was small when he grunted continuously every few seconds all day long. He couldn’t stop and we tried all the traditional behavioral techniques of extinction, or telling him, “no,” or “mouth quiet,” to no avail. Finally, in desperation, I told him in totally normal language before a car drive that his grunting was distracting to me while I drove and I told him that he needed to make every effort to not do it for the duration of the drive. To my amazement, he did. From that point on, even before he had communication output, I gave him the benefit of the doubt and the respect of normal communication input.
Regularly, Ido gets letters from parents telling him that they now speak normally to their child with autism, thanks to his advice, and that their child is responding positively. Ido has asked professionals to ponder, if you had duct tape over your mouth and around your hands, would that mean you couldn’t understand speech? How would you like people to talk to you if you were in that situation? How do you talk to a nonverbal autistic person?