Autism’s Diverse Degrees

Cornelia, Walt, Owen and Ron Suskind in 1996By day, Ron Suskind (55) is a Pulitzer Prize-winning political journalist and author of several New York Times bestsellers. By night, he becomes Iago the parrot, Simba the Lion, and Baloo the bear.

No, he is not a shape-shifting Disney fanatic, just an extremely devoted father.

At the age of three his youngest son Owen was diagnosed with regressive autism. “I do remember the drive home from that terrible day” Ron’s wife Cornelia recollects, “It was like I lost all hope.”

The lively and talkative Owen they had known disappeared right before their eyes. He unlearned all the speech and social skills he had developed so far, and communication with their son became incredibly difficult, almost impossible.

But hope returned in the form of a parrot.

Many autistic children develop a ‘passion’, an interest they focus intensely on. Owen’s was Disney. Aladdin, the Jungle Book or the Little Mermaid, he watched movie after movie and re-winded the same clips, staring at the screen.

And it is through Disney that the family learned to communicate again: Owen started mimicking the movie dialogue. It was the first form of coherent ‘communication’ in long time.

One evening Ron had an idea. He picked up a puppet of Iago, Javar’s parrot sidekick, and talked to Owen:  “So, Owen, how ya’-doin’?” he asked in Iago’s voice. “I mean, how does it feel to be you?” Owen answered: “I’m not happy. I don’t have friends. I can’t understand what people say.”

It was a breakthrough, and opened up a whole new world for the family. One  with Owen in it.

You could call it a storybook ending for a tale full of hardship and a beacon of hope for others experiencing something similar.

But Owen’s story is just one end of the spectrum.

In the USA alone, where the Susskinds live, more than 1.5 million people are living with Autism Spectrum Disorder, and according to the Centers for Disease Control and Prevention (CDC) report it affects an estimated 1 out of 68 children. And that is only the USA.

There are so many more tales to tell.

“I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head,” a ‘forty-four year old neurotypical dad’ writes on his anonymous blog.

‘Autism Daddy’ as he calls himself decided to turn to the internet to express his feelings and mostly his frustration about autism. His son is now 11, but still isn’t such a success story as Owen.

His wife is a full time stay at home mom simply because there is no room for a job with a son like theirs. He is the job.

Their son often has full on meltdowns: kicking, screaming and somersaults on the couch while throwing all things within grasp, even with all the effort he and his wife put in.

And that isn’t even the worst of it.

“I had no patience with good and decent colleagues who told me how busy they were,” Kent State University professor Gertrude “Trudy” Steuernagel wrote in an editorial for the campus newspaper, the Daily Kent Stater. “Busy? Try spending an evening sitting in a closet with your back to the door trying to hold it shut while your child kicks it in.”

Even though Sky, her son, was a constant source of stress, Trudy loved him to death, but over time she became scared of him. Her son was diagnosed with autism when he was only three years old, but he gradually became more and more violent.

Then the unthinkable happened.

On January 29th 2009 the sheriff’s deputies found Trudy severely beaten in her own home, barely able to breath. The then eighteen year old Sky was taken into custody.

And Trudy? Trudy died.

Letter by Trudy in case of her death. http://blog.cleveland.com/metro/2009/12/kent_state_professor_trudy_ste.html

“Autism is a very big continuum.” Temple Grandin, an autism advocate and autist herself said in her speech on autism for the nonprofit organization Technology, Entertainment, Design (TED). And it is.

I have three family members at different ends of the spectrum. From my nephew, diagnosed with Asperger syndrome, who studies and socializes just fine, to my fifty-five year old uncle who still can’t look people in the eye but wouldn’t hurt a fly, all the way up to my sister whose prime outburst of frustration bought her a night in prison and a note of domestic abuse on her otherwise clean record.

It’s certainly diverse.

“You know, the thing is, autism comes in different degrees.” Gradin stresses. According to her it ranges from very severe cases all the way up to brilliant scientists. “There’s going to be about half the people on the spectrum that are not going to learn to talk.”

But Owen, Owen is the half that does succeed. While not every case ends in a success story, people can at least take away the message to not to give up hope.

by Céline Cornelis

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