Category Archives: autism

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.”

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.

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.

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

Challenge

Every day of my life I face a kind of moral dilemma. My autism makes self control very difficult. It takes more effort to sit still in class than to do the intellectual work. I have big personal goals for myself. I prefer to have a full life than a hidden, bored one in some remedial class like most other severely autistic people. It is my mission to help them get an education too. None of this is a dilemma. I am clear on my goals, but I struggle morally with my inner forces. My body is programmed in a different way than typical people. It has internal orders that differ from my mind’s intentions. My struggle to control myself is to be kind to others, thoughtful of the space of others and not disruptive in class. Each day I remind myself to do this because it is the right thing to do in spite of how hard it is to accomplish.

The DSM, Asperger’s, Autism and the Diagnostic Criteria


I think the American Psychiatric Association’s decision to eliminate Asperger’s Syndrome from the new DSM is not very smart and I’m not sure what their motivation is. It can’t be based on seeing people like me and seeing people with Asperger’s as identical in terms of symptoms. In a spectrum, I’d assume we’d be the same, just milder or more severe versions of each other. But it isn’t exactly that.
I think rather than lump everyone together under one big, fat label, the psychiatrists at the APA should try to notice how many differences there are in the symptoms. It is frustrating to me to need to show them the obvious, but researchers, in my opinion, seldom pay attention to non-verbal autistic people. Even when those non-verbal people who can communicate by typing describe physical symptoms different than Asperger’s Syndrome, many researchers look to Temple Grandin and others, not to Tito, or Carly Fleischmann, or me, or other non-verbal people who type to explain our experience of autism.
Let me help the APA.
Temple Grandin
*Independently drives, rides horses, shops, cooks, etc.
*Lives alone.
*Initiates actions throughout her day.
*Excellent fine motor control. Able to use hands to graph detailed engineering projects.
*Talks.
*Has difficulty interpreting people’s behavior.
Ido Kedar
*The opposite.
To make it clear, I have no difficulty understanding human behavior, but my brain and body are not working well together. In common, both of us have sensitive sensory systems, poor eye contact and shyness.  But, people with asthma, and people with heart disease, and some people with cancer all may experience shortness of breath but that doesn’t give them a Breathless Spectrum Disorder.
I think researchers might want to look at the big differences in symptoms and adjust their diagnoses to fit, rather than squeezing everything on a continuum that may actually be different conditions.

Autism Poetry

It is starting to be noticed that non-verbal autistic people are writing books. There is mine, out for one month, and a few others by teenagers. Why is that the books are written by teenagers? I think it is because we are the from the first generation of autistic people to be taught typing.

I have a good friend, Sydney Edmond, who wrote a book of poems, The Purple Tree, four years ago. Like me, she studied with Soma and was released from her solitude. Like me she has a mom who is trying to give her a fully normal experience in life. But unlike me, she is a poet. I wanted to introduce you to another autistic writer, but with a totally different voice and style. Autistic people are as different from  from each other as anyone else.

Here is a taste of Syd’s lyrical poetry.

The Ocean in Winter

As I linger on a thought
looking out to sea
I wonder if a little bit
the sea remembers me.

We wallowed in the summer,
We walked in spring and fall,
Winter’s here, and I fear,
It knows me not at all.

It wails upon the shore,
eating up the sand,
angry, loud, and thrashing,
making it’s demand.

Teaming waves will tear at you,
some will tear you down,
laughing at your thrashing
until you’re surely drowned.

Is this the sea who played with me
beneath a sky of blue;
that tickled at my toes
and lapped my ankles, too?

What is it makes it happen?
I want to understand.
Want my sea that sings to me
to come and take my hand.

And so I’ll wait as patient
as the birds up in the sky
for warm  sunny days,
and a sea that plays,
to return.

Inspiring Man

Last week I had the opportunity to hear Nick Vujicic at an event for the Friendship Circle. If you don’t know who he is, Nick Vujicic is a man who has no limbs at all. He was born this way, but despite his challenges, he is freer inside than most people. I so relate to his struggles though mine have been different in many ways. Still, key challenges have been identical.
How do you find peace with faith? How do you accept the situation and stop the sorrow? How do you overcome limitations? How do you deal with other people who stare, or don’t know you’re normal inside?

It is more a decision to live fully than anything else. Nick had a tough time as a kid. So did I. He had to fight to get an education in school. So did I. With no limbs, independence is impossible. With severe autism, independence is impossible too. But he learned that the road to freedom is not in having no challenges, it is making the most of the reality life has dealt you. The life he got is harder than average, by loads, and he had to live bigger than  normal to just keep up. He is not ashamed, embarrassed, or hiding. He lets people get comfortable with him. That is a great gift.

I had a chance to meet him briefly. He has a cool wheelchair that is tall. It brings him to eye level, more or less. I gave him my book. It inspired me a lot to meet a man who bravely lives life fully, and does good, important work, even though he might have given up. Giving up is the easy way to run from pain but he decided that his life had a higher purpose. He is a role model to many people who despair over much less.

For me, it is a great reminder to count my blessings and to remember that challenges are meant to be overcome.