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.”
A great relief
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.”
Making sense of one's self
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.”
Cohen-Rottenberg describes the process of writing Path, which chronicles her struggles with autism from early childhood through her adult life, as “very healing.”
“To paraphrase Rilke, the feeling was one of weaving together the disparate strands of my life into a single cloth. I didn't find it particularly difficult to narrate my own experience,” she says.
“I'd been doing it internally all my life, just to make sense of how I felt when I couldn't find anyone who understood,” Cohen-Rottenberg noted.
While researching Asperger's syndrome, Cohen-Rottenberg came across many outdated but still popular beliefs regarding the disorder. She herself does not identify with them, and hopes that her own account of life with Asperger's will help to “dispel stereotypes.”
“There are so many dehumanizing stereotypes about autistic people: that we lack empathy, that we don't understand different modes of thought, that we're overly logical, that we don't have feelings, that we're not social beings, that we're not imaginative, that we can't be fully included in the world,” she says.
“It's very painful to have people believe these kinds of things,” she continues. “Many misconceptions are based on outdated research, failures to ask the right questions, or overly simplistic interpretations of the answers.”
In the book, she devotes a chapter, “Our Deficits: Strengths in Disguise,” to the process of turning liabilities into assets or appreciating the different way through which people who are not “neurotypical” perceive the world.
So often, Cohen-Rottenberg says, “people talk about us without ever actually talking to us. I very much hope that my book helps to give people a clearer picture of what it means to be on the spectrum.”
Modelling respect
Rottenberg offers plenty of advice for people who want to know how to relate to people with Asperger's and other autism-spectrum disorders.
“The key to any good relationship is respect. It's not enough to tolerate a person, or even to accept a person, with or without disabilities. You have to model respect,” she says.
“Be sensitive. Find out what the person needs. Listen to the answers. Don't minimize or dismiss the person's experience. Don't look at the person as broken, impaired, abnormal, or wrong,” Cohen-Rottenberg adds.
Finally, she advises people to “see the person as a whole human being, just like you. And remember that human diversity is something to be celebrated, not feared.”