Author with autism finds voice through writing

10:59 PM, May 6, 2013   |    comments
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Before Barb Rentenbach became an author, she never had a friend. Now she regularly fills auditoriums with friends, and strangers, who come to learn about her life.

An author and autism advocate, Barb strives to create connections because she knows how lonely autism can be.

"Autism is my prism, not my prison," she types before the crowd.

But that was not always her experience.

Barbara Ruth Rentenbach was two years old when her world closed in.

"Thinking ceased to build upon itself. That is when Barbara Ruth filled in for me and went into survival mode," writes Rentenbach in her latest book, "I Might Be You: An Exploration of Autism and Connection."

For the next 17 years, doctors also believed she was profoundly intellectually disabled.

She was a child living in a sea of static. For Barb, colors bring vivid visual experiences, as well as scents, sounds, and tastes.

With intense effort she could occasionally calm the noise to make out a message- but why bother for a world where she couldn't connect? Barbara Ruth couldn't speak.

"Fear and uncertainty made sure that anger was always the most available natural resource," writes Rentenbach.

Biting, kicking, feces smearing-- her behaviors strained her family and her mind. A mind no one imagined existed.

"Truth is, most wouldn't have cared anyway, because they think I am a black hole. What goes in, never comes out."

Now her words come out, although through someone else's mouth.

A condition associated with her autism, called Apraxia, limits Barb's speech to outbursts similar to Tourette Syndrome.

"Goodnight," "you're not going," and "damn it, damn it," are some of her most common phrases.

Instead her friend and doctor, Dr. Lois Prislovsky substitutes her lilting southern drawl, reading Barb's painstakingly typed thoughts off her iPad.

As Barb puts it- her voice is "still in the shop."

The team met 10 years ago when, as Prislovsky describes it, Barb's family was close to the end of their rope.

Barb's mother and father provided the very best care for their daughter, but it seemed to make little impact. When Barb returned to living at home, after spending several years at a facility for handicapped people, the Rentenbachs called in reinforcements.

Prislovsky recalls the interview vividly, being greeted by Barb's stately parents and then introduced to their daughter.

Prislovsky and Rentenbach are about the same age. The thing that stands out the most about their first meeting all these years later, was Barb's uncharacteristic silence.

Prislovsky recalls feeling Barb study her out of the corner of her eye.

The young psychologist strove to discover what would motivate her new client.

What she discovered was that Barb loved to learn. It started with Prislovsky administering a modified IQ test to try and gauge Barb's intellectual state.

She found Barb to be incredibly intelligent.

But to be able to discuss the history and philosophy Barb was interested in, she had to learn to communicate.

The pair began to work on facilitated communication. At first, Barb could only type with a sturdy hand on her elbow guiding her pointer finger to a key.

After countless hours of practice, now she only needs a hand on her back (and lots of encouragement from Lois) to plug away at the keys.

"Barb types her thoughts," said Prislovsky, "but only if you let her know, 'I'm listening.'"

The two went on to co-author two books, including 'I Might Be You.'

With Barb's new found communication skills, she was for the first time directly in control of her fate.

"We asked Barb, 'what do you want to work on first?'" said Prislovsky.

Weight loss was one of Barb's first goals. So several days a week she hit the gym and the weight rapidly came off.

Barb also wanted to live more independently. She now stays in her own home, though assisted full time by a live-in attendant.

Writing transformed Barb's physical conditions, but also her mental state.

In "I Might Be You," she describes transforming from 'Barbara Ruth,' to just 'Barb.'

"Barbara Ruth was M.R.-- mentally retarded," reads Prislovsky off Barb's iPad. "Barb is smart and all there."

So what advice would Barb offer to her former self now?

"O.M.G. girl- find love. And fast," typed Barb.

It's advice she's taken to heart after meeting her boyfriend, Jerry.

The couple met last year at one of Barb and Lois' book presentations.

It's something the team does a lot of lately as they promote their latest work.

"Writing is my life, my gift, my job, my joy," typed Barb.

Other advice from her book: "Remember who you are and what you are here to do."

In 'I Might Be You,' Prislovsky offers plenty of advice to parents and fellow doctors about discovering what motivates the autistic people in their lives.

Barb writes a lot about her experiences growing up- with unexpected and sardonic humor.

She is the first to acknowledge she has been blessed with parents who can afford her care.

Rentenbach is a big name in Tennessee construction.

But one of Barb's goals in life is to support herself through public appearances and book sales.

Interested in purchasing the book? Click here.

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