Ido in Autismland on Sale at Amazon

Amazon has put my book on a post Christmas sale. I have no control over how Amazon makes its internal pricing decisions, so I have no idea how long the book will be available at a discount -- but if you want, it's a good opportunity for you to get it cheap.

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.

The Ocean

I love the ocean. I feel so happy there. The weather could be hot or chilly but I feel happy to see the sand and waves. I love the feel of the cold water too. I go too far in it sometimes. The ocean is soothing and the sound of the waves is like a metronome that isn't steady, but never stops.

I remember loving the ocean since I was a baby. I'd run to the water as fast as I could. My family would have to hold me back or I'd go in even in my clothes. It is like a magnet, in a way. When I go to the tidepools I resist the urge to go into the waves because the ocean because the ocean there begins  past the rocks and the tidepools filled with anemones and starfish. Only kayaks and surfboards venture there.

Many people with autism love the beach. Our senses have a field day there.

Autumn Morning Dog Tease

My dogs are staring at the tree outside our back door. This has been going on for over an hour. A big, bushy squirrel is teasing them. It climbs down to eat some fallen seeds right in front of them. Real casual, ha ha. They stare and stare until one runs because it has no more ability to sit. The squirrel takes a leap and is gone in the tree, mocking my poor dogs.

From My Speech at the Vista del Mar Autism Conference

My name is Ido.  I have autism and I can’t talk. But I can think. I have ideas and feelings and even a theory of mind. Why I have to say this is obvious. Many theories I have encountered teach that I have no ideas, feelings, or theory of mind. Until I could communicate I couldn’t correct people, but now I can. 

When I was 12 I decided to write about my symptoms, my education, and my life. I wrote for 4 years until I wrote a book about autism. It has just been published.

My book is like an autism diary. I tell my story. I write about my feelings. I teach the truth about my autism.

I decided a few years ago that experts had made a lot of mistakes that everyone just accepted as gospel. Not to offend anyone, but how does everyone know for sure? Hard to know absolutely if the people you are dealing with are silent and can’t write or gesture. 

My early life was extremely frustrating because I did not have a means to communicate. I listened to my experts day after day say that I had to keep working because I didn’t know nouns, verbs, pronouns, categories, emotions, my relative’s faces, and so on and so on.

But I did. I was just trapped in an uncooperative body. 

That is why my book is called Ido in Autismland: Climbing Out of Autism’s Silent Prison.

Autism has been like a prison, but I have helped myself to make it a prison breakout.

Now, you can see that I’m hardly normal as I stim, stare and move oddly. But, believe it or not, I go to a regular high school, and I go to only regular classes, and with the help of my aide, I am there from 7:50 to 3:00, and I intend to graduate on time with a diploma and make my future.

I have thought often how my life would have been had I never learned to type. Isolated. Lonely. Bored. 

I know that what I am saying may make some people squirm and some celebrate. I really hope to show a new path to understanding a baffling condition.

Me and my iPad and me and my letter board are my voice to breaking free. If you would like to learn my story, please consider reading Ido in Autismland.

I thank you for your attention and your willingness to be challenged by an outspoken, silent guy.

My Book is Available on Amazon

At long last my book is ready to be purchased on Amazon. Soon I hope to have a kindle version as well. I hope you find it interesting. Please let people know about it, and please consider writing a review on Amazon after you read it.
Thank you,
Ido

Autism Conference Next Weel

For those in southern California next week, I will be speaking at this conference and signing my soon to be released book.  Very soon it will be for sale on Amazon and I will keep you posted.

Accepting Autism

In some ways I'm getting used to autism but I can't get too used to it or I won't get better. I have to strike a balance between the need to accept myself the way I am and the need to not accept myself the way I am, so I can keep fighting to improve. Not easy to find that middle spot.

Cages

My autism is just like a cage. I can look out and see the free people, but I stay stuck inside. I think the lion that paces in its cage gets used to its routine and knows the bars don’t open, but the lion doesn’t realize that other lions roam freely over vast savannahs, and that food doesn’t magically appear from nowhere.

It is different for me because my cage is like an invisible barrier. Bars, not of steel, but of impulsive behavior, stims, and limited speech have the same result though. I watch the people move around me and I am stuck behind my barriers. 

I watched my sister celebrate her birthday with her best friends this weekend. I couldn’t joke, talk, or join in. I told myself not to get lost in the jealousy because I envied her social pleasures – not that I listened to my own advice. In that way I am unlike the lion because I know what I can’t do yet. People overlook me because I am odd, or because I don’t speak, but I still watch, wishing one day to be liberated from my cage that traps me inside my own body.

As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to people who do not. Today I am sharing what my friend, Cathy Gomez, wrote. Cathy was my aide in school for the past two years.

As Ido’s Behavior Interventionist for four years, I was initially able to see him communicate with his mom every time I did a home session. It was very fluid and natural. I also went through the process of training to communicate with Ido. It was very difficult at the beginning because we had to build trust and a relationship. Ido was so anxious, but that slowly lessened. We practiced every other day and each time we got a little better until we reached the point that he was able to fluently communicate his thoughts to me. I was able to see the progress as well as Ido’s frustration when I misunderstood him. Recently it has been so exciting to watch Ido type on his iPad. The iPad will allow Ido to become more and more independent in so many more ways.   

Ido’s greatest strength is that he is resilient. He wants to experience and do things, just like you or I, even if they are more difficult for him. It takes a lot of courage to be mainstreamed in all regular classes, knowing that he will be the only student like him. Ido’s greatest challenges are controlling his emotions and body. He has a more difficult time managing feelings because they tend to quickly escalate. However, even when emotions are high, Ido is great at staying reasonable and listening to logic.

Working with Ido for the past four years, particularly the past two, when I was with him throughout the school day, has affected me significantly. He changed everything I knew about autism and people with disabilities. I was supposed to be the educator, but he has taught me more than I could learn from a professional.  In college I learned that autistic people can’t have empathy, which is a ridiculous notion. I now view people with autism or other disabilities the way I would anyone else. Ido has shown me that he isn’t held back by his disability. He goes hiking, likes to joke around, wants to learn new things, and reads faster than I do.

Researching Genetic Roots of Autism

This article discusses some of the recent findings in autism research.

Guest blogger- Introduction to Ido

As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to those who do not. The first is by Tami Barmache, lovely friend, and mother of a son with autism.

I remember meeting Ido’s mother, Tracy, at a mom’s night out. She was describing that while Ido was unable to speak, he was communicating by pointing to letters on a letter board. I had never heard of such a thing, was fascinated and wanted to learn more. I, too, had an autistic son who was not able to speak.

As the mother of a child who often cannot communicate his thoughts to me, watching Ido on the letter board, and now his iPad, has always been nothing but a pleasure- liberating. It is sometimes difficult to reconcile the differences between how Ido presents himself to the world, and the words and ideas that he spells out on the letter board or keyboard. There is something that tugs at you and says, “It just can’t be.” But then you see him, over and over again, spelling out his thoughts that are clearly his. It is not Ido’s job to prove himself to us. His challenge of remaining in control of his body to the best of his abilities is enough to face every day. We are the ones who have to find a way to overcome that incongruence, and kick through the barriers and limitations that skepticism creates.

Ido has many strengths, but the one that stands out for me is his perseverance. He says that his mom was relentless in her efforts to bring communication to his world. He was along on that ride, and was hungry to learn and communicate. He is strong, determined, and wise beyond his years.

I would imagine that Ido would say his greatest challenge was living a life without communication. Now he is able to convey his thoughts, feelings, struggles and successes. He has the ability to find his way through difficulties with the help of those who love and believe in him. He continues to face other challenges, such as gaining better control over his movements, and reaching other families and professionals.

So little is understood about autism in general, and specifically about individuals with limited communication.  Ido is very articulate, and has a vivid and clear way of describing his experience with this very difficult disability. With these insights, we can go beyond all of the technical terminology and the need to “fix” everyone. Ido can give us a window into the world that we, as parents, long to know so much more about. Professionals owe it to their students, clients, and patients to listen to what Ido has to say.

One day I was sitting under a beautiful tree in a park with Ido and his mom. I was frustrated and confused about what might be going on with my son. I always turn to Ido as my “go-to guy” in order to get a little bit of insight into my little guy’s world. After patiently answering some of my questions, Ido spelled out on his letter board: “Autism is a deep pit. Don’t give up.” I think of those words regularly and they give me strength. I will never give up. Thank you, Ido.