For more information about The Uncharted Path and to purchase the book ($17.95 paperback, $8.95 as a PDF), visit www.journeyswithautism.com. By way of disclosure, Cohen-Rottenberg has begun volunteering as a copy editor and proofreader for The Commons, and her husband, Bob, serves on the board of directors of Vermont Independent Media, the nonprofit that publishes the newspaper.
Originally published in The Commons issue #74 (Wednesday, November 3, 2010).
BRATTLEBORO—At the age of 50, Rachel Cohen-Rottenberg was diagnosed with the neurological disorder known as Asperger’s Syndrome, a type of autism.
She experienced profound relief and joy, as well as grief, over the knowledge of what had caused her constant social and emotional struggles throughout her entire life.
People who live on the autism spectrum find they have great difficulty with social interaction and communication and a tendency for repetitive behavior, among a constellation of other symptoms.
In the case of Cohen-Rottenberg, the diagnosis of Asperger’s — a milder form of the disorder — explained a lot about her life, and the knowledge gave her the context to adapt the way she lives and works.
Cohen-Rottenberg, who moved to Brattleboro in 2009 and lives with her husband, Bob Rottenberg, and her daughter, Ashlynne, has documented her experience before and after the diagnosis in her new autobiography The Uncharted Path: My Journey with Late-Diagnosed Autism.
“I’ve been a writer for most of my life,” says Cohen-Rottenberg, who has a master’s degree in English, and who worked a technical writer and editor in the software industry for 15 years.
After leaving her career, Cohen-Rottenberg published her first book, A Sense of Place: The Story of the Williams Family Farm, in 2007, chronicling the history of a farm in rural western Massachusetts and the family that owned it for generations.
In Path, she describes the ways in which autism affects her senses, her ability to form new relationships with people, and honestly describes the challenges it puts on various aspects of her life.
“Little by little, my life began to make sense,” Cohen-Rottenberg describes in her first chapterr. “Try as I might, I’d never known how to navigate the social world. Staying in sync with the rhythm of a conversation, even in a small social gathering, had always been difficult. Worse still, I’d always felt frightened, overwhelmed, and disoriented in large crowds.
“Take my daughter to the mall? Forget it. Enjoy contra-dancing? Impossible. Make small talk at a wedding reception? I could never fi gure out how—or why. At every social event, I’d end up in the same place: leaning against a wall and looking for someone else who seemed equally dazed. If there were a library in the building, all the better. I’d go there and hide.”
In her book, Cohen-Rottenberg — who describes herself in the first sentence of Path as “wife, mother, writer, singer, artist, and community volunteer” — also discusses the changes in her life when her own suspicions were confirmed by the diagnosis. The experience introduced her to more people who had been diagnosed with autism after struggling for years to understand what was “wrong” with them.
“I have been in contact with a number of people who were diagnosed in mid-life, and for many of us, the diagnosis comes as a great relief,” Cohen-Rottenberg says.
“For the general public, it might seem odd to welcome an autism diagnosis,” she adds. “For those of us who have spent our lives not understanding our differences from other people, finding our place on the wide and varied autism spectrum has been a tremendous help.”
Cohen-Rottenberg feels fortunate that her book is already inspiring and encouraging many people living with autism.
“I’ve received a number of responses to my book along the lines of ‘I see myself in so much of what you write. It’s such a relief! I didn’t think anyone else in the world was like me,’” she says. “When I get a response like that, I know I’ve been successful.”
Cohen-Rottenberg, who also maintains a blog, www.journeyswithautism.com, eventually began using the term “autism” instead of Asperger’s because “far too many Aspies seek to distance themselves from the stigma of autism,” she explained on her blog this month.
“Trust me, I understand the impulse, but it’s just plain wrong to abandon people who are on the spectrum with us, especially people who are even more marginalized than we are because they don’t have the ability to ‘pass’ for a moment,” she wrote. “And the more I feel how wrong it is, the more I feel the vulnerability of the autism label.”
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