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!



Special Ed Crisis — The High Cost Of Autism Education

Here’s a story within a story within a story.

The first story starts with a local headline: “Escalating Special Ed Costs Impact Surplus.” The Bloomingdale, NJ Board of Ed recently had to move $238,000 from its $343,447 surplus to cover special education services. They also appropriated an additional $50,000 to pay litigation costs related to special education services.

Although matters of pending litigation could not be discussed, the story behind the story was clear: Bloomingdale is spending a boatload of money on Special Ed services, but it’s not enough. Evidently some parents want additional services, and are willing to take the borough to court.

Bloomingdale Board of Education

The Bloomingdale Board of Education considers special education costs before a gallery of groovy artwork.

Bloomingdale Board of Ed member Dan Schlotterbeck feels the state should help shoulder the cost of some of these services.

“These are necessary costs,” he said. “But we can’t do it alone.”

The Big Story >

And that’s where the story within the story lays — the big story. Special education costs are on the rise across the nation. Why? Autism rates are on the rise. An estimated 1-in-88 kids are being diagnosed with the developmental disorder. Nowhere is this felt more acutely than in New Jersey, where the rate of this disorder is 1-in-60; 1-in-30 boys in the state of New Jersey are being diagnosed with autism. That’s a lot of special education students. That’s a lot of special education students who have yet to be born.

Nearly eight years ago, the Government Accountability Office estimated the cost of educating an autistic child at $18,000 per year, nearly three times the cost of educating a typical student. It costs more to educate an autistic student than any other type of special education student. And states are mandated to educate autistic students until the age of 21.

It all adds up to a financial crisis that could bankrupt any educational system. It’s a financial crisis that’s already upon us, only its effects have yet to be fully felt. The Bloomingdale school board feels the pinch. They won’t be first. Things are going to get much worse.

High Price Tag, Sub-Par Service >

My son has autism, so I have firsthand knowledge of educating an autistic child. So far it has been a financial hot potato — a responsibility that everyone wants to quickly toss off to someone else. The state school board wants local towns to educate autistic students in-district; let each individual school board figure out how to pay for its autistic kids. But the smaller districts, like Bloomingdale (and the one I live in) aren’t equipped to handle the educational needs of ASD (Autism Spectrum Disorder) and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) classified kids, so they look for out-of-district placements; they pay somebody else to educate their autistic kids.

But even if the price tag is high, the services can be sub-standard. The demand for a quality education for autistic children is simply overwhelming the supply; too many kids need help and there are not enough qualified staff to help them. I can sympathize with the parents of special-needs kids in Bloomingdale, the ones who are alluded to only between the lines of the story about school board bookkeeping. It costs a lot to educate an autistic student, but autism is such an individualized disorder that sometimes your kid still needs more.

Sometimes you have to fight to get it.