Putting Ezra First (L.A. Times op-ed)

(This piece appears on the op-ed page of the Los Angeles Times, Sept. 21, 2011.)

As the father of a teenage son with autism, I have coped with many challenges: finding the right school for a boy who can’t sit still and has trouble connecting with peers; managing medications to help tame his anxiety and other symptoms; learning to negotiate endless one-sided conversations about my son’s two obsessions — animated movies and animals.

But those demands have never annoyed me in the way The Question does. Rarely does a week pass without someone asking me: “So what do you think? What causes autism?”

This summer has seen a plethora of headlines on the topic. July brought news of a study showing an unexpectedly high occurrence of autism among fraternal twins, a finding that could implicate both genetic and environmental factors. Then new research revealed that younger siblings of children with the disorder have a 20 times greater chance of developing autism than the general population. Last month’s story was British researcher Simon Baron Cohen’s “assortative mating” theory. It speculates that parents who share certain tendencies — such as expertise in math and science — may produce children with a higher risk for autism.

So what’s the parent of a living, breathing autism specimen to do with the constant barrage of speculation? My standard reply: I’m grateful that scientists are focusing on autism. I’m going to concentrate on my kid.

That’s the simple answer. But it’s actually more complex. When you read about studies on, say, breast cancer or juvenile diabetes, the objective is clear: to eradicate these awful diseases and save lives.

Autism, on the other hand, occurs on a spectrum. At one end are individuals who can barely communicate, can’t care for themselves and seem lost in a constant blur of involuntary movements. At the other end are people with quirky dispositions, rigid personal habits and a tendency to speak and think obsessively about one or two subjects such as train schedules or insects.

My son falls somewhere in the middle: Ezra is verbal, but, at 15, he still tends to talk about the same things over and over: otters, Pixar movies, dog breeds. He doesn’t rock or flap his hands much anymore, but his sensory challenges make it difficult to stay in one place, so he paces in math class and during recess while other kids are chatting with friends.

Like many people with autism, he also possesses a remarkable memory. He knows the running times of hundreds of animated films, has mastered the details of several animal encyclopedias and can recall the exact date in 2003 he first heard a woodpecker. Learning a new acquaintance’s birthday, Ezra will charm the person by instantaneously announcing which Disney movie premiered on that exact date.

More important, he has remarkable enthusiasm for life, greeting days that are significant to him — the first of the month, for example, or the day of the “Cars 2″ premiere — by running around the house before dawn shouting with infectious delight.

When I hear that, I wonder: Would we really want a world without such people? Or without biologists with underdeveloped social skills who can focus obsessively on a particular breed of newt? Or without certain brilliant software engineers who might not make great dinner party guests? (The ultimate irony is that the kind of person who has the obsessive focus to isolate the combination of factors that cause autism might just have a touch of it himself.)

I’m pleased that so much money and brainpower is going toward investigating autism. Thirteen years ago, when Ezra was 2 and first displaying signs of the disorder, research on it was rare and parents like us weren’t typically advised to be alert to its symptoms.

Now, thanks to advocacy groups like Autism Speaks (which merged in 2007 with the Los Angeles-based Cure Autism Now), the science is impressive. Fifty academic and research institutions are collaborating on the Autism Genome Project, the largest-ever study to find genes associated with inherited risk for autism.

Another program is tracking more than 2,000 infant siblings of children with autism to help discern environmental factors that might play a part. Few scientifically proven treatments are available to treat autism’s symptoms, but now millions of private and government dollars are helping researchers to focus on finding them.

The increased understanding and public awareness this research brings can only be good.

As for our family, we often deal with our circumstances with black humor. Sometimes when Ezra has the flu or is knocked out by a fever, his behavior is radically transformed. Normally in constant motion, he slows down, cuddling quietly under the covers like any other sick kid. My wife looks at him, then at me, and smiles. “Maybe when he wakes up, he’ll be cured,” she says, as if some sci-fi movie magic could remove our son’s autism.

It’s our joke because we can’t separate Ezra from his disorder. Nor would we want to. Ezra without the Pixar fixation, without the mental catalog of animal kingdom trivia, would not be Ezra. What would life in our house be like without a 15-year-old who wakes up once a month elated just because he gets to turn a new page on the calendar?

I’ll be happy to know when they figure out the science. But I’ll still be focused on my kid.

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One Comment

  1. sara
    Posted October 7, 2011 at 8:18 pm | Permalink

    just found your blog (via story on ny times) and i can’t stop reading or CRYING! as a parent of a 6 year old who has recently been diagnosed, all of this is really hitting home for me. thank you. thank you for reminding me that my life would lack the technicolor my son provides so vibrantly. i hope i can remember that when i am struggling with the challenges of our life and feeling sorry for myself (not gonna lie – sometimes i do). at a recent parent teacher conference the teacher cried telling me how much she LOVED my son and what joy he brought her. we all laughed when she told us the story of him reading (!!) ahead in his monthly book and already filling out the book through next february. i can’t help but feel PROUD of him when i retell that story and i hope that, as our life unfolds even more, i can follow your lead and continue feeling pride instead of wishing my son or situation were different. again, thank you.

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