NYT: A Roller Coaster to Acceptance of a Son’s Autism

[Guest guest]

April 7, 2009

A Roller Coaster to Acceptance of a Son’s Autism By ANNIE LUBLINER LEHMANN

When my husband and I were told that our son Jonah’s

autism<http://health.nytimes.com/health/guides/disease/autism/overview.html?inli\

ne=nyt-classifier>was

“untreatable,” we made up our minds to prove the experts wrong.

That was 22 years ago.

We were young and energetic, and the developmental gap between 3-year-old

Jonah and his peers, while obvious, was not glaring.

With no other children to care for at the time, we made helping Jonah the

focus of our lives. Every exchange would become a lesson, every experience a

tutorial.

Jonah cared most about food (and still does), so I’d go to the grocery store

with a list and an agenda, hoping to use that passion to teach him essential

concepts. I would follow his gaze and point out colors (red apple) and

shapes (round cookie).

When he turned away from such lessons, despite our most animated efforts, we

tried everything else we could think of. Nothing was too difficult or too

expensive. We gave him

vitamins<http://health.nytimes.com/health/guides/nutrition/vitamins/overview.htm\

l?inline=nyt-classifier>and

restricted his

diet<http://health.nytimes.com/health/guides/specialtopic/food-guide-pyramid/ove\

rview.html?inline=nyt-classifier>.

We introduced communication boards and arranged sensory integration therapy.

We had him wear headphones to normalize his hearing and tried other

snake-oil treatments no thinking person would consider.

But each hope was followed by disappointment. We might as well have been

chasing butterflies with a torn net.

By the time Jonah reached his teens, we were worn out and frustrated, not

very far from where we’d started. We faced the specter of hopelessness and a

plethora of unanswerable questions.

How different was Jonah from other children with autism? Would he have been

better off had we not tried all that we did? Or would getting off the

interventional roller coaster mean that we had given up?

Though we had been desperately trying to teach him, we had to concede that

Jonah was no student. What we wanted him to do had little to do with what he

did. If he didn’t want to do something, he would drop to the ground and

refuse to budge.

So we decided to back off and began taking cues from him.

We did the same activities as in the past, but without a checklist of goals.

Until then, he had never been able to enjoy the sensory pleasures of his

beloved food magazines without our subjecting him to a monologue about what

he was looking at. Now he was finally free to enjoy things for their own

sake.

Not long ago, I came across a basement copy of “Cinderella.” It reminded me

of a time when he was 5, when I last tried to read it to him. Well, not

read, exactly; Jonah has always had a low tolerance for traditional reading,

and stories must be sung or recited rhythmically.

As I sang “Cinderella,” he rolled on the floor, seemingly oblivious to the

story. Still, I clung to the idea that I might be able to engage him, so I

left a sentence for him to complete.

“The clock struck 12,” I sang off key, “and Cinderella ran down the palace

steps, leaving behind a glass ... .”

He continued rolling while I waited to hear him say “slipper.”

At last he finished the sentence for me. “Of milk,” he said.

I smiled, and I’m smiling still. For Jonah had made a student of his

teacher. I would never again be able to read or think of “Cinderella”

without seeing a tumbler of milk on the palace steps.

Jonah turned 25 last fall, and when I look at him I can’t help wondering if

the past years weren’t some heaven-directed scheme meant to humble us and

teach us the value of acceptance. Understanding that we couldn’t change him

had changed us.

His future, for the most part, is set — in a nearby home with a caring staff

— and I am grateful that he has some of the same things I want for my other

two children: love, safety, physical comfort and access to favorite

activities.

He remains a man of very few words. But though it took us years, we have

finally learned that there was something to hear in his silence.

Annie Lubliner Lehmann, a writer in Michigan, is the author of “The

Accidental Teacher: Life Lessons From My Silent Son.”

--

Ari Ne'eman

President

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

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