Book Review: Ido in Autismland

Ido in Autismland: Breaking Out of Autism's Silent Prison by Ido Kedar.

Ido in Autismland: Breaking Out of Autism’s Silent Prison by Ido Kedar.

Ido Kedar is angry — and it’s awesome!

You can’t blame him. For the first 12 years of his life, Ido Kedar was stuck in an uncooperative body, unable to communicate. Even now, as a teenager, his communication is limited to pointing to letters on a keyboard.

But don’t assume his lack of speech equals a lack of intelligence. As Kedar points out:

“The erroneous theory is this: to speak is to understand. Tell that to Stephen Hawking.”

Ido lives in “autismland,” as he calls it, a scary place fraught with communication problems, sensory issues, and severe anxiety. Kedar’s book, Ido in Autismland: Climbing Out of Autism’s Silent Prison, is a firsthand account of what it’s like trapped at the “low functioning” end of the autistic spectrum. This collection of essays — published in 2012 when Kedar was 16 years old — reveal the author’s beautiful mind, poet’s soul, and warrior heart.

Kedar is a person — a mind, a soul — fighting to be heard. And, once he finds his voice, he doesn’t mince words.

“The “experts” mostly never get it right. They assume we are some autistic, retarded stim-machine, not a trapped, thinking person who has a neurological illness. … Do I sound angry? Well, I am. It’s time autistic people told the experts that they have made mistakes.”

Kedar breaks down many of autism’s odd behaviors. Why are autistic kids so attracted to water? “Because in the water I can feel my whole body,” Kedar explains. He also explains the motivation behind the repetitive pleasure/torture of self stimulatory behaviors.

“In my Health class we are learning about drug abuse and alcoholism. I can’t help but see a similarity in autistic stims… Stims are the drug of the trapped.”

Kedar is both baffled and troubled by the “flight impulse” that sometimes overcomes him. It’s a common autistic trait — in my son’s school they call it “elopement.” Sadly, it’s the same impulse that recently got autistic student Avonte Oquendo killed.

“Traffic is visually stimulating. It may invite some kids to move toward it. I can’t explain that one, but I have felt the impulse to bolt suddenly… It’s not due to ignorance or idiocy. It is the impulses and too weak a body control to fight them off. It doesn’t matter why. We still need supervision to be safe.”

When Kedar writes about the frustration of having a body that won’t respond to his will, he sounds like a philosopher.

“I’m stuck like a stump and my brain is thinking of what it wants my body to do. It ends there. Thinking, not responding. In other words, what good is my free will if I am like a thinking man in a straight jacket?”

Later in the same passage he shows courage beyond words.

“I fight the temptation to despair because I really want to free myself. It’s my job to free my soul. Hopefully one day my body will be free too.”

Ido writes with a wisdom and maturity well beyond his years.

“I’m not a brave person. I am scared of being in front of cameras or interviewers. I have decided to speak out anyway. It’s not my goal to be well known. I like being anonymous, but I am determined to say what has to be said. It’s not always our choice if we are brave. Sometimes it’s important to do, even if you’re scared.”

Like a Zen master who spends decades alone in contemplative silence, Kedar has achieved a kind of enlightenment. It’s no pity party for Kedar. He’s got himself together better than most.

“I think a lot of it has to do with expectations. If you think life owes you something, you can’t appreciate what you have … The way to appreciate your good fortune is to notice your blessings … I see that to hate your life dooms you to a wretched one, even if the life you have is hard. The truth is I don’t need to be normal to make my life meaningful. I need to have freedom to think, loving friends and family, and a recognition that no life is perfect. In spite of an illness I wish I didn’t have, I actually have it better than many people.”

Kedar’s “secret to happiness” is “stopping self pity,” and he reveals the heart and soul of a true writer when he discusses the healing power of words.

“As I write, I see what I should work on. I will continue to write my journey for myself because now I see that writing heals me.”

Amen to that, Brother Ido!

Check out Ido Kedar’s writing here!



Book Review: The Reason I Jump by Naoki Higashida

The Reason I Jump by Naoki Higashida

The Reason I Jump by Naoki Higashida

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (2007) by Naoki Higashida

KA Yoshida (translator) David Mitchell (translator)

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida is like a Rosetta Stone, a secret decoder ring for autism’s many mysteries.

Author Naoki Higashida is a non-verbal boy with autism living in Japan. He’s able to write using a letter board, and this book of essays was published in 2006 when Higashida was 13 years old.

While Higashida doesn’t represent everyone on the autistic spectrum, his book certainly helps explain many autistic behaviors from the inside out. Higashida answers questions on a variety of topics, like, “Why do you flap your hands?” and, “Why do you like to jump?”

Higashida’s answers show amazing insight into the autistic mind, detailing a unique system for filing memories, as well as a perpetual struggle with sensory input, and the concept of linear time.

The mental gymnastics needed to overcome autism’s obstacles are tremendous, and sometimes brilliant. But it’s exhausting being inside Higashida’s head — you can only imagine how he must feel.

A quest for consistency — for something true and unchanging — is behind many autistic behaviors, as seen in Higashida’s response to the question, “Why do you like to spin things?”

“Watching spinning things fills us with a sort of everlasting bliss — for the time we sit watching them, they rotate with perfect regularity. Whatever object we spin, this is always true. Unchanging things are comforting, and there’s something beautiful about that.”

Many of Higashida’s introspective insights are universal, and written with a poet’s hand.

“Invisible things like human relationships and ambiguous expressions … these are difficult for us people with autism to get our head around.”

Invisible things are hard for all of us to grasp. Thoughts, emotions, memories, and faith; germs, virus, and disease. Our lives are ruled by Invisibles. They get us all in the end.

Asked what causes his panic attacks and meltdowns, Higashida’s response is perceptive and poignant:

“Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or a meltdown.”

Higashida’s apologetic tone resonates throughout this collection. He longs to connect, but he knows his strange behavior makes others uncomfortable, and it breaks his heart. It will break yours, too.

But The Reason I Jump is a double-shot of hope for parents of children with autism, especially those of us raising non-verbal / limited-speech kids. This book is proof of what we’ve known all along — our kids are thinking / feeling / loving people trapped inside uncooperative bodies. They wear their skin like an ill-fitting suit, constantly tripping on the hems, and getting caught up in the sleeves whenever they reach for something. Sensory Integration Disorder and the strange wiring of the autistic brain makes connecting with the outside world a challenge for our kids.

The Reason I Jump author Naoki Higashida

The Reason I Jump author Naoki Higashida

Higashida says the autistic mind focuses on details (flashing lights, a ladder, hoses, black tires, loud siren); while a typical mind will immediate recognize an object (a fire truck). Higashida sees a benefit in this reverse-engineered view of the world.

“Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us.”

Connect with a person with autism — see the world through their eyes — and you’ll be blessed, too.

Check out Naoki Higashida’s blog and other writings here:


Coming Soon! My review of  another autism autobiography, Ido in Autismland by Ido Kedar