Turning the Titanic

Guest Post

By Tami Barmache

We live in an exciting time! A time when people are starting to think that maybe the children and adults that we were certain were receptively and cognitively challenged are actually bright, literate, capable, and gravely underestimated. As a mom of one of these underestimated children, it certainly feels like change is in the air. The tide is turning!

It may be like turning the Titanic, but maybe once we start to build momentum and inertia takes over, there will actually be a paradigm shift that will change the lives of countless incredible, bright and often misunderstood individuals. We are missing out on so many gifts and insights. If people only knew!

My heart is beating fast just thinking about how I feel every time my son, Dillan, shares his thoughts with me. Everything from simple opinions, to funny stories, and profound insights. It's life changing for all of us. He feels like his life began when he started to communicate. That's not an easy thing for a mother to hear, but it's honest, and I can only imagine how limited his world was when he had no way to express himself. 

Dillan began his journey to communication when he was 10 years old. I fought hard within myself to dig deep and follow through with the practice, but Dillan’s resistance, and mine, often led us astray. We were fortunate to have Tracy and Ido to re-motivate and inspire us along the way. I remember sitting in the park with them one afternoon looking for some words to propel me forward again. Ido told me that “autism is a deep pit…don’t give up.” 

I never gave up. I urged his teachers and therapists to see who he truly was, to raise the bar, to give him the opportunities he deserved. I don't know if my desperation was apparent from the outside, but inside I was screaming. "Don't you see????" I showed video of him doing math and writing stories, explained the process, and tried so hard…so hard. But sometimes a journey has it's pace, no matter your plan. It took several years and the right support in place to finally achieve the daily communication and learning opportunities that Dillan has now.

Today, things are finally moving in the right direction. I must admit that it is taking Dillan a bit longer to become fluid in his typing with me than it has with some others.  That being said, we are getting “our groove” and improving every day. We will have to work together to sort through the pain, frustration and hopelessness that Dillan experienced all of those years, but it's never too late to find a voice…never too late! 

The documentary "Wretches and Jabberers" features two incredible men who began typing later in life, and I'm sure many other have been able to communicate after years of silence as well. It's never too late. As parents, there are a lot of intense feelings to face in this process, but none of them compare to their sentence of silence, so we have to take a deep breath, support them, push for them, and celebrate who they are and have always been. It's painful. But we can do it. We must do it…for them. But we don’t have to do it alone. We can build a community to support each other, and to provide opportunities for learning and practice.

We all need communication. Real communication.

As Larry Bissonnette (from "Wretches and Jabberers") said so well at a recent event: "Operating pictures on a board brings you cheeseburger, typing lets you create the menu."

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 anybody like 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 about the person (“He knows…”) and not to the 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 in Autismland, 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?

Valuing Your Education

My Spanish teacher had a meltdown in class a few weeks ago. Lots of kids were rude and disrespectful to her. She said, “I quit,” sat down and did nothing. After that, until I got switched to another Spanish class, we had subs. I actually wanted to learn Spanish and she was nice to me so I felt disappointed when this happened. She burned out in front of us. 

I have been wondering why the students in that class had such terrible attitudes. I realize some have difficult home lives or have homes that don’t focus on learning, but to me the indifference to learning is puzzling. In my case, I fought so hard to be allowed to learn and to have a career one day. How come they waste their chance to get an education? It makes me very sad because the kids are decent people. They are nice to me and treat me with decency, but they are not nice to the teacher and don’t respect her. But I think even sadder is their lack of respect for their own futures. I think they can’t imagine that better things will come if they try.

I was imprisoned by my body and trapped with no education in school year after year when I was small. I know that an education is a gift, but they feel it is a prison. I wish I could help them to see how to value it.

Silent Fighters

Me, Carly, Tito, Elizabeth, Naoki.
Who are we? Silent fighters, that's who. I love the flood of books by nonverbal autistic people. It is time to be advocating for ourselves. Why forever must the theories of scholars be listened to over the people with autism themselves?
Is it possible Ivar Lovaas or Bruno Bettelheim knows autism better than I do?
The momentum is beginning. Here we come!

One in a Million, or So

Have you noticed how many new books are coming out by severely autistic, non-verbal people? If you look at my book on Amazon you can see many other books recently published by teens who type. I am glad to see it. Routinely experts claim we are one in a million if we get out of rememdial education and communicate fluently. I think the number is too high. If more and more autistic authors have books we each are less than one in a million, right? Maybe by now it's 1 in 10,000 or so (Drat, I'm not so special after all, ha ha). Maybe every severely autistic person in the world will have to write a book to end this theory. Since we all express the same message of intact mind and impaired motor control, when will the theories shift to the truth?

Option 1- We are all fake trained monkeys scamming you.
Option 2- We are one in a million (and going down).
Option 3- We don't have autism. (It's miraculously cured once we type, lol).
Option 4- The theories are wrong.

If all non-verbal writers have the same message, that is something to consider, isn't it?

More on Autism and Fitness

Here is an interesting interview on Autism Spectrum Radio with my trainer, Mike Ramirez, (who recently wrote a guest post here),  on autism and physical fitness. We can be fit too.

Opening of my Remarks at CSUN Department of Special Education Commencement

It is a great honor to speak to future teachers in special education. I began my life in special education of the most restrictive sort. My early years had to be my hardest because I had no voice at all. I want to challenge you to be open to teaching those who may currently lack the ability to show their intelligence, but who still deserve the opportunity to learn.

  It is hard to be a teacher of kids who don’t communicate. The kids don't have writing, or gestures, or speech, or facial expressions, but that doesn’t mean they can’t think. Lack of communication isn’t only a sign of cognitive delay.

I’ll give you an idea of my early life in my low, remedial autism class. My teacher was warm, but there was no instruction of any kind beyond the weather, 1+1, and ABC. Forever. I think it is pretty boring, don’t you? It is worse when people treat you like you’re not intelligent. Baby talk and high fives and “good jobs” instead of normal communication.

I think the idea that all non-verbal people with autism have receptive language processing delay is not accurate. I don’t have receptive language issues but I sat in this classroom for years, unable to show my true capacity.

It is important to not be overly confident or certain when you deal with people who can’t communicate. In fact, it is essential to have an open-mind, because more kids than you imagine are like me. How people escape this prison varies, but we must have the opportunity.

I feel that you, who are embarking on new careers in special education, need to know that a kid like me will be in your class – that is, a kid like me before letter board or iPad – who just can’t get his ideas out.  To be a great teacher you can’t be his prison guard. To be a great teacher you must find intelligence and give the hope of freedom in communication. To be a great teacher you must give a real education to those kids who may look stupid in the eyes of many, but who think, and feel, and pray every day for the chance to show who they are inside.