False (Deprivation of) Hope

By guest blogger, Tracy Kedar

 A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now."

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a "low functioning" autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

 I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

 I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

 Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

 Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

 How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

 Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.

The Courage to Hear, to Learn, to Change

Guts means the courage to change. My book, my speeches, and my efforts have challenged people who have gotten accustomed to seeing severe autism in a traditional way. We need rudimentary lessons. We need drills to learn words, understand emotions, recognize the people in our lives, notice gender. We need baby talk because we don’t understand English or speech. We need M&Ms because we have no motivation. It is an illusion to imagine we can be more.

So, I am honored and amazed when parents and educators write to me that my explanations changed this thinking after years of seeing it one way. One person said it “hit him like an anvil on the head." One described how he was, “shaken to the core.” One mom wrote a long letter about how she had always believed that the potential for her son to type was “delusional,” but after reading my book she understood how he could be smart but trapped internally. Now she types with him freely. He is 20 and finally able to communicate his ideas and finally is seen as intelligent. Brave moms, Brave dads, because they now have to face systems that have to look at why their methods could not see this possibility in the person with autism.

“I now speak normally with my son and it has changed everything,” I hear over and over. “I see my students differently,” I hear as well. One brave teacher wrote that she now wonders if she has been going at it wrong for decades. Kudos to them for thinking openly. It is guts.

I will tell you one lady with guts is my old teacher from when I was small. I write in my book how I loved her in spite of my frustration and boredom in her class due to babyish lessons and repetition. Fate has plans and recently my mom ran into her many times after years of no contact. After several weeks she told my mom she would like to read my book. I knew it would be painful for her because I talk about her- not by name, but she would know. I wrote her a note. After reading my book she came to my mom with a letter for me. She wrote that she tried to read it through my eyes. She was powerfully impacted and was determined to teach differently, to see her students differently too. She has been teaching a long time. This is guts and I admire her.

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.

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.

Creating a Fitness Program for People with Autism

 by guest blogger, Michael Ramirez

www.special-fit.com

Recently I received a call from a parent asking if I could fitness train an autistic child. I

had been a high school baseball coach for over 10 years. Much of my expertise in fitness

had come from various experiences in working with athletes in strength and conditioning

programs, working in fitness centers, through textbook study, and apprenticing other

fitness experts. I also had 10 years of experience working as a behaviorist with autistic

children. I had a sound understanding of both areas, but this was an opportunity to

combine the two. I quickly discovered that despite the fact that people with autism face

many physical challenges, there wasn’t much information out there or programs that

addressed this area. In order to work with this child, I would have to start from scratch

and develop a program tailored specifically for him.

When I began my research, I started to think about what was available to the autism

community. School programs, like Adaptive PE, really didn’t address the issues I was

going to try to work on. One problem I saw with APE, during my years as a behaviorist,

is that it focused too much on teaching how to play certain games or sports, which I

found to be too abstract, with not enough focus on getting the kids to move and use their

bodies. Instead of focusing on functional movements, these programs produced more

frustration because of the slow paced activities. I then questioned why people with autism

don’t go to their local gym or just hire a trainer. This was obvious. First, even if a parent

hired a personal trainer to work out their child, there was no guarantee that the trainer

would have any understanding of autism and the challenges that accompany people

living with this condition. Secondly, therapists like myself, don’t always have the fitness

background to be able to work on the fitness side in a safe and knowledgeable way.

Needless to say there weren’t many resources out there, so I was going to have to develop

a program through the combination of my two experiences in both the fitness world and

as a behaviorist.

I began to think about all of the different children I had worked with in the past and the

physical challenges they faced each day. Many of the kids I had seen shared many similar

physical characteristics like low muscle tone, poor coordination, lack of strength, lack

of flexibility, balance issues, and overall limitations in their movements. Then there was

the neurological aspect that impacted their physical functioning. Challenges with motor

planning and sensory integration (proprioception and vestibular) were the most evident.

Communication and behavioral challenges are also common among children with autism.

Taking this into consideration, it became clear why there weren’t many programs

out there for people with autism. There were so many issues that made it difficult to

produce such a program. Safety was the first thing came to my mind. Initially I was

uncertain how I was even going to get a child with autism to perform the basic functions

of fitness. Although I had a great deal of experience in working with kids with autism

on the behavioral side as well as many experiences working with neuro-typical people

on the fitness end, I had never combined the two. Many autistic people are very out-of-

shape and have significant gaps in their strength and mobility. With this in mind, I began

imagining the process of getting one of my clients to do a burpee, or a deadlift or to run

for an extended period of time, or to be willing to exert themselves in a way that would

get them the types of results that would be necessary for a physical transformation. This

is hard for anyone beginning a fitness program, but is particularly challenging for an

autistic child who may not be used to engaging in any kind of exercise. I knew that if I

was going to get anyone in shape, they would have to be exposed to “real fitness.” I had

worked alongside occupational therapists for many years. I had seen how they struggled

to get children to do some of the things they demanded. What I was going to require was

not like putting a child on a swing. I was going to demand real workouts with the goal of

fitness and progression.

A couple years back, I had been exposed to the concept of CrossFit through a family

member. I had trained in CrossFit for a couple years when I began to train my first

client with autism. When I started to think about all the experiences and knowledge I had

from the therapeutic and fitness side, CrossFit was a good match as a means to structure a

program specifically tailored for children with autism. CrossFit scales exercises to the

individual. This seemed to connect to the “I” in Stanley Greenspan’s DIR Floortime

Model which stands for “individual differences.” Since no two people are alike, no two

people with autism are alike either. Children that I would be working with needed a

specific program to fit their needs. CrossFit allowed people to progress based on their

current fitness level. CrossFit was developed by Coach Greg Glassman. CrossFit ,com

states that Glassman defined “ fitness in a meaningful, measurable way (increased work

capacity across broad time and modal domains). CrossFit itself is defined as that which

optimizes fitness (constantly varied functional movements performed at relatively high

intensity).”

Many children with autism struggle with flexibility and range of motion. Proprioceptive

Neuromuscular Facilitation (PNF) was a good answer to this. Of course I needed to

modify its application. PNF was a good way for me to facilitate stretching without having

the student do the work. The combination of this type of stretching routine and the

CrossFit structure, gave me the necessary components needed to design a good program

to fit the needs of people with autism. All I needed to do was test it.

I began to work with the family who was in search for a personal trainer. It was my first

opportunity to test my concepts and ideas. There were many bumps in the road, but the

road to success is not always straight, as they say. It took a while to figure out how to

elicit certain movements, capture attention, and promote motivation. I relied heavily

on my experiences working with Dr. Arnold Miller, who created The Miller Method; a

cognitive systems approach to working with kids on the spectrum. The basic philosophy

that I took from his teachings, in the application to this program, was the use of children’s

aberrant systems and transforming them into functional, relevant activities. For example,

one of my athletes likes to take string like objects and twirl them around. It is a self-

stimulatory behavior. I used his motivation to stim on these objects, to introduce a heavy

rope and create a system of functional movements that can be repeated. It turns “rituals

into repertoire”, also a title of one of Dr. Miller’s books. His philosophy in working with

people with autism shifted my view about how to use certain behaviors that are common

to people with autism. I was fortunate enough to have worked closely with Dr. Miller

for several years before his passing. His techniques worked well in combination with

CrossFit methodologies. They simply complimented each other.

The philosophy of this workout program is based on three principles: Neurological/

Physical/Individual Based (NPI). Neurological Skills, as it refers to fitness, describes

functions like agility, accuracy of movements, coordination, and balance, as well as body

awareness. Physical Skills include characteristics like strength, flexibility, endurance,

stamina, power, etc. The last part takes into consideration the differences between each

individual. Everyone has their own set of skills and abilities. With children and teens with

autism, I needed to consider many different things, primarily communication (receptive

and expressive), cognitive ability, socio-emotional skills, sensory processing, behavioral

challenges, and learning styles. Scaling and modifying exercises, using the CrossFit

methods allowed us to tailor a program specifically for each individual, while helping

them progress through each movement at their own pace.

The physical components of exercise in relation to people with autism needed to address

the student’s areas of weakness as well as their strengths. My research emphasized the

five basic fundamental movements of fitness: pushing, pulling, bending, rotation, and

locomotion. These foundational movements allow us to work on basic movements, and

build up to more complex and compound movements, through the use of scaling and

prompting. Many autistic kids have difficulties with these movements. For example, one

of my clients has a big frame and was fearful of certain movements. In our assessment, he

was fearful of bending his elbows to lower his upper body because he thought he would

not be able to support his own weight and might flop down and smash his face into the

ground. As a result, he was unable to do a push-up, so for weeks and months we worked

incrementally toward this goal, first by getting him vertical and pushing off a wall, and

then by progressively lowering him horizontally towards the ground. Today he can push

off the ground, and with a little assistance, he can get his hips up. I know it will be no

time before he is doing a full push-up on his own. He has also made big strides in his

ability to bend and squat. Initially he would bend his knees only very minimally. This

impacted on his ability to perform daily functions like picking up an object from the floor

or even sitting down at a desk. A few weeks ago he got his rear end below his knees for

the first time, when doing an air squat, with some support to maintain balance (holding

his hands out in front of his chest). This was a great accomplishment for him.

When I began to work with some of my first clients I noticed many common

characteristics. Many of the children had bodies that had low muscle tone, very weak

posterior chain and core muscles, tightness in the lower half, and very soft upper

bodies (Physical). Some of the kids I met had difficulties with balance, coordination,

motor planning, agility, the ability to perform compound movements, and be accurate

in movements (Neuro). There were also deficits in communication, attention, and

behavioral issues, which made it difficult to motivate them to perform for an extended

period of time. Let’s face it; exercise can sometimes be painful and hard, especially in

the beginning. To get the best results in each workout I focused on strength, compound

movements, strengthening a specific muscle groups, and work on the constant varying

functional movements at a high intensity.

It takes time to get the kids accustomed to the workload, the pacing, and to gain

confidence in the movements. There are times when I need to be more of a motivational

coach, than a fitness coach. It is definitely a process. All of my students are making gains

in one way or another. Working on physical fitness has its obvious advantages when

you consider the health benefits but when it comes to people with autism, the benefits

are even greater. I have received feedback that fitness training has impacted things like:

sleep patterns, energy levels, mood, attention, communication and behavior. One of

my students expressed that exercising helps him to feel his body better. He also feels

it has been helpful with his pointing (typing). Exercise gives kids with autism added

satisfaction and increased self-esteem when they connect their brain and their body and

even strategies to deal with excess energy. Recently, the mother of a client told me that

her son requested to do some pull-ups in the middle of a behavioral therapy session.

He then proceeded to continue to perform his own routine of sit-ups and push-ups in

combination until he relaxed.

Fitness is an area that has far too long been under utilized in the lives of people with

autism. My mission is to change that, through my company, Special-Fit. I want to thank

all of my students for inspiring me and helping me develop this program. It was because

of the relationship I’ve created with them and their families, that forever changed the way

I view people with autism. They have taught me more about breaking through limitations

than any other individuals I have met in my lifetime.

Michael Ramirez

Special-Fit

Owner and Head Trainer

For more information about Special-Fit, visit our website at www.special-fit.com