From: Cape Cod Times Online, capecodonline.com
October 31, 2004
Cape Cod’s Karen Rodman turns a personal struggle into a decade-long crusade to help families dealing with this type of autistic condition.
Ten years ago Karen Rodman was a lonely hunter, wondering why her husband couldn’t communicate emotions if his life depended upon it.
Doctors sneered, counselors scribbled “needy” when she told her tales of woe. Her husband corrected her grammar in an autobiographical poem she wrote about child abuse. He didn’t come to the hospital until two days after their child was born. He received the news of his brother’s death with an odd detachment.
Yet this man – who didn’t want to be identified by name or interviewed for this story – was also gentle and mild-mannered.
There was a problem. But what was it?
Rodman got a partial answer eight years ago when a neuropsychiatrist in Boston diagnosed her husband with Asperger’s syndrome, a high-functioning form of autism.
She immediately started researching the syndrome but found most of the material was written for parents fighting for the rights of children with the disorder.
“There must be other people out there whose spouses have Asperger’s syndrome,” Rodman thought. In 1997, after making contact with some people in England, where the syndrome is more widely recognized, Rodman started an organization called FAAAS Inc., for Families of Adults Afflicted with Asperger’s Syndrome.
Her son, Tom Rodman, designed a Web page for the new organization, and its efforts took off like a runaway train.
Her husband’s diagnosis transformed Rodman from someone seeking support in her own struggles, to someone others turned to in order to help solve their own problems with Asperger’s syndrome.
In the past seven years, Rodman figures, she has received 300,000 or so e-mails from anguished people all over the world who want to share their tales of loneliness and suffering.
She has hosted three international conferences for the families of people with Asperger’s syndrome. The first two were on the Cape. The last two were co-sponsored by the Massachusetts Mental Health Center, which is affiliated with Harvard University.
Now the organization that sprouted in Rodman’s Centerville living room has an office on Route 28 in Centerville. Pins on a world map show how far people have traveled to attend her conferences – from Australia, Indonesia, Sweden, Norway, Finland, Scotland, England, Denmark and the Falkland Islands.
“She’s one of the most passionate people I’ve ever met regarding her cause,” said Karen Tanous of Cape Cod Human Services. Rodman spoke at three workshops sponsored by the CCHS, an affiliate of Cape Cod Healthcare, last year, attracting 140 people.
The testimonials to Rodman’s efforts take on a more personal tone, too.
Pam (she didn’t want her whole name used) from San Francisco said Rodman and her organization “saved my life in a sense, and my sanity.”
Pam struggled with the fact her husband (now her ex) and her son were both diagnosed with Asperger’s. I was very, very depressed. (It helped) just being able to talk to people who understood, who didn’t say all men are like that.”
What’s happening is the spouses and partners of adults with Asperger’s syndrome are desperate to be validated, to know that they are not imagining things, that something really is off-kilter in their loved one’s intimate communications, said Dr. Linda Demer, a professor of medicine at the University of California Los Angeles Medical School. She is on the FAAAS board of directors, but made it clear she is not representing the medical school in that role.
Few marriage counselors or other therapists have studied the syndrome, so they don’t recognize it in adults they are counseling, Demer said. Approximately 80 to 90 percent of the time, the person diagnosed with Asperger’s syndrome is male, and the female is the one trying to alert the experts to the problem.
But just as years ago mothers of autistic children were blamed for causing the autism by being cold “refrigerator mothers,” the non-Asperger’s spouses now are being blamed for being too “needy,” too emotional and, often, too domineering.
Rodman calls it the “Cassandra phenomenon” after the seer in Greek mythology whose prophecies are never believed.
For instance, the Asperger’s spouse may not be able to handle the give and take of what passes for normal communication. Negotiation, hinting, sweet talk – nothing makes a dent.
“Often what happens is the spouse learns she has to talk a certain way to the person with Asperger’s syndrome in order to be understood,” she said. “They speak in a very blunt way.”
That kind of “mother speak” can make marriage counselors shudder.
Demer sighed. “My role is to try to figure out ways to reach the professionals and educate them. The (psychology) profession made a terrible mistake about mothers of autistic children decades ago without apology. The same thing is happening now with spouses.”
The other problem is that people with Asperger’s syndrome can be very competent, even wildly successful in the workplace, making it difficult for a mental health counselor to raise the issue of a possible syndrome.
The obsessiveness, egocentricity and technical intellect associated with the syndrome have led many such individuals to success in computers, music, medicine, professorships, engineering and other fields.
That makes it hard for an ex-spouse to argue in court that the former spouse with Asperger’s isn’t up to caring for a child in a 50/50 custody arrangement.
So why are what the autism community calls “neurotypicals” attracted to individuals with Asperger’s?
Besides sometimes being financially successful, people with Asperger’s can appear mild-mannered and charming, even courtly, during the early stages of the relationship. But once the “goal” of marriage or a relationship is reached, emotional inaccessibility becomes the order of the day, some experts say.
With autism rates on the rise, there are bound to be increasing numbers of people with Asperger’s entering relationships.
Understanding Asperger’s syndrome is critical to providing emotional support to those who have it, Rodman said. “The spouses and parents are the heroines and heroes of Asperger’s syndrome.”
She said they help the person with the syndrome navigate in the social world and unwind after holding it together during the work day. Those suffering from the syndrome may be medicated, but there’s no cure.
Rodman hopes that in the future behavioral techniques that help children with autism to communicate and how to behave in social settings will also have an impact on adults with Asperger’s syndrome.
In the meantime, she’ll continue answering e-mails from wondering, anxious spouses and partners wondering about their loved one’s inability to communicate and strange habits.
“Some days I get 50, some days I get 10,” Rodman said. “I’m validated every day from the e-mails I get from around the world. We’re giving information to people who desperately need it.”