среда, 29 августа 2007 г.

A different focus

Ben Anderson is feeling the Beatles. In every sense of the word.
The 20-year-old from Santa Monica knows every lyric, every note of the band's 208 songs. He's now recording the entire catalog, playing most of the instruments, singing all the vocals, producing and arranging with the help of two music industry veterans.

He also has perfect pitch, a photographic memory and not a shred of performance anxiety. In the already-recorded versions of numbers like "Octopus's Garden," the vocal similarity is uncanny.


Video: The Autism spectrum


"They represent a lot of me," Anderson says of the Beatles.

But on a Thursday morning in the Woodland Hills studio of music teacher and co-producer Guy Marshall, Anderson's connection to the Beatles manifests itself another way.

"I remember being


shot," he says. "I don't really remember it, but I have a vision. When I read on the Internet how John Lennon was shot, I could kind of remember and feel how that must have felt.
"Am I crazy for that?" Anderson asks.

Diagnosed with a social disorder known as Asperger's syndrome (AS), Anderson asks this question often. The answer is no, although to those who don't understand or recognize the syndrome, AS individuals — or "Aspies" — often come across as decidedly oddball.

As young children, they can soak up vast amounts of information on a single topic, lecturing and educating anybody they meet (AS has been referred to as "Little Professor" syndrome) on anything from astrology to animals to Japanese anime.

Dr. Laurie Stephens, director of autism spectrum disorders at the Help Group in Sherman Oaks, recently worked with a nearly 4-year-old boy whose obsession was woodchippers.

Because their social abilities are impaired or underdeveloped, AS children don't pick up on social cues and often have difficulty developing and sustaining friendships.

"It's really difficult to take these chatty, intelligent kids and think this is a psychiatric disorder," says Stephens, adding that most Aspies aren't diagnosed until age 9.

"I'd say it's kind of like a disorder where you don't understand social norms, and you assume people are out to get you," Anderson explains.

This prompts his mother, Susan Rubinyi, to ask: "What do you see as some of the positives of Asperger's that we usually tell folks about?"

Rubinyi's book about her son, "Natural Genius: The Gifts of Asperger's Syndrome," seeks to cast the disorder in a different light. There are challenges, certainly, but great benefits as well, Rubinyi contends.

"Albert Einstein had it," Rubinyi argues, adding composer Bela Bartok and pianist Glenn Gould to the list.

"I want to show people there are great gifts and strengths within (people) with Asperger's."

Grouped as it often is with autistic spectrum disorders, AS is not without controversy. The disorder didn't make it into the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1994, and the criterion one must meet to receive the diagnosis is hotly debated. Some contend that AS and high-functioning autism are the same thing.

In many schools, a diagnosis of Asperger's alone is not enough to get the district to pay for special education services, often forcing psychiatrists to confer a diagnosis of autism instead. Neither condition has a cure.

First described by Austrian physician Hans Asperger in the 1940s, AS is diagnosed less frequently than autism: About one in 500 children has the condition, compared to the Centers for Disease Control and Prevention's most recent estimates that one out of every 150 children is autistic. Male Aspies outnumber their female counterparts by a 10-to-1 ratio.

"Say 'autism' and most people respond with something like, 'Rain Man,' " says Dr. Stephen Shore, author of "Understanding Autism for Dummies."

"Say 'Asperger's syndrome' and people think you're talking about donkeys in Dusseldorf or something," he says.

At age 4, when a nonspeaking Shore was diagnosed with autism, Asperger's awareness was even lower. Thirty years later, Shore was re-evaluated and deemed to have AS qualities.

"There's more literature about Asperger's. People with Asperger's are writing both autobiographies and books on how to help people with (the condition)," says Shore.

Mark Haddon's best-selling novel, "The Curious Incident of the Dog in the Night-Time," whose narrator is generally considered to have AS, has been optioned for a film.

Whereas severely autistic individuals frequently speak little and avoid social interaction, Aspies are typically extremely verbal and social. They desperately want friends but have difficulty learning the necessary skills to cultivate and keep them.

William Wagnon, 20, is working on his general education requirements at Santa Monica College and hopes eventually to become a therapist. He has run seven marathons, competed in triathlons, helped build a house in Mexico and worked with children with disabilities.

Even so, when it comes to everyday interaction, "It's really the luck of the draw," Wagnon says. "Sometimes I'm able to approach someone and whip up a conversation with them. I'm able to see the social etiquette rules before I break them. Other times, with other interactions, I don't."

For nearly 10 years, Wagnon has been attending a social group through Focus on All-Child Therapies. During weekly meetings, group members discuss everything from food to school to jobs. And, "Once or twice a month, the subject of sex comes up," Wagnon says.

"The real key is social skills training," adds the Help Group's Stephens. "Most adult (AS patients) want to be in relationships. They want to get married and have children, and they do get depressed when they're not successful at that. If we get the kids early enough, we can give them social skills, and most of them do quite well."

For Anderson, music is a part of his education and, potentially, his future career. Anderson lives with a roommate, and in his sessions with Marshall, he is learning not only the ins and outs of cutting a track but also about collaboration, keeping a schedule and taking responsibility.

"He comes in sometimes and prefaces the session by saying, 'I have to start working on original songs. Nobody is going to take me seriously if I don't,' " Marshall says of Anderson. "He's really come a long way."

Celebrating their health

Jack Merrick was drawing on the straw in his jumbo Scorpion cocktail with such gusto, it seemed the drink's floating gardenia would be vacuumed up.
Surrounded by old friends, good food, four anesthesiologists and two colorectal surgeons at Trader Vic's in Beverly Hills, Merrick had chosen a heck of a way to celebrate his 43rd birthday.

Like many birthday parties, this one had a theme. A medical theme. It was called Scope Fest 2007, and it involved eight 40-something guys who made a party weekend of getting colonoscopies.

"Interesting way to get back together, huh?" Don Chiesa, 40, said earlier that day as he waited his turn at the Specialty Surgery Center in Beverly Hills.

Merrick, a self-described "recovering lawyer" who now runs his own home health care company, says he is known for both his appetite for partying and his ability to hatch great ideas that die on his couch.

The idea for Scope Fest was sparked by a Newsweek article that described how deadly — and preventable — colon cancer is, and how resistant men typically are to dealing with doctors.

"We don't stop and ask for directions, and we don't go to a doctor unless there's a gun put to our head," Merrick said in the waiting room before


his procedure. "So how in the world is anybody voluntarily going to go for a colonoscopy?
"So I had this wacky idea. I thought, what if you could bundle a proactive diagnostic medical exam into a guys' party weekend? It would be a hall pass. It seemed like the wives would be packing the overnight bag, the kids would be waving and cheering you — thanks, Daddy! — and you're going to have a wild time and actually do something helpful and smart for your own well-being."

It could have been another one of those fizzled-out brainstorms had he not met Dr. Liza Capiendo, a colorectal surgeon, at a physicians' gathering.

He pitched the "medi-spa weekend" concept to her, describing a block of appointments on a Friday morning followed by a weekend at a posh hotel with massages and maybe an awards dinner. She enthusiastically endorsed it and pressed him to book it in March, which is colorectal cancer awareness month.

He sent out about 50 e-mail invitations, many to his Columbia University fraternity brothers and roommates. "Some guys lost my number, some guys were e-mailing each other behind my back, saying I'd gone to the dark side.

"I got e-mails from wives saying what a brilliant idea," he added. "I have never gotten a letter like that from one of my buddies' wives, I assure you."

It was 12, then 10, then eight from San Diego, San Jose and points between who followed through on Merrick's proposal. The e-mails exchanged in the weeks leading up to Scope Fest were full of poopy puns — think "brown is the new black" — and Merrick nicknames such as Jackson Polyp and Colon Bowel.

Then there was the Thursday night before the procedure.

"I sat in the bathroom and chugged laxatives on my birthday," Merrick said. "My sons brought me Jell-O with a candle in it. I had to explain to my 6- and 4-year-old why Daddy's in a cold sweat on the bathroom floor, naked."

Modern technology provided some consolation for the patients' misery during what Capiendo calls "the bowel prep."

"Imagine eight guys on the toilet sending text messages to each other," Merrick said. "From a moment of excruciating pain, I am laughing so loud reading text messages. Talk about male bonding. This is a really strange bonding experience."

While some used only the Demerol sedation that is commonly covered by insurance for the procedure, Merrick and a few others opted for general anesthesia for an extra $250 out of pocket. "A mere bag of shells when you're talking about having your intestines probed, don't you think?" Merrick said.

The results: Three of the eight had polyps removed, and Merrick later boasted that his was the largest. "They had to use a special tool to remove it. They had to go to Home Depot and rent something," he joked.

Capiendo also reported one case of melanosis coli, which comes from frequent use of laxatives, and a couple with fairly common diverticulosis. Neither condition is serious, and they can be managed with more fiber in the diet, she said.

She said it was good that the polyps were removed, and that they were detected well before age 50, which is the American Cancer Society's recommended age for the first colonoscopy in someone without symptoms or a family history of colon cancer.

"Not all polyps become cancer, but cancers almost always start from a polyp," she said.

Capiendo later showed her good humor by accepting one of Merrick's "golden ram" awards and presenting one of her own: the "best ass" honor, which went to Philip Nevinny. She says the award was the nurses' idea, not Merrick's.

"For them it was a treat because it was a young guy," she said. "We usually see old, hairy, saggy behinds — on the men and the women!"

The guys reminisced about past Merrick parties, particularly the Sand Suck, when they lay belly-down on a beach and slurped mai tais from a pit. But they endorsed this new, grown-up twist on a weekend bash.

"I thought it was absolutely ridiculous and absolutely wonderful and a good thing," Nevinny said. "It's not only good for us, but for men and women in their 40s to raise awareness and really take charge of the issue. Perhaps these events will be sweeping the nation. They really ought to be."

Toward that goal, Merrick is hoping to launch scopefest.org, a nonprofit site to offer tips on organizing your own colonoscopy weekend.

He's sure he will be ribbed by his friends for a long time to come, but he's OK with that.

"To turn your colonoscopy into a media event is very Jack C. Merrick, according to some. But you know, this might just inspire some people to do something like this — maybe not with the alcoholic beverages and awards ceremony that we have planned later in the evening, but just to get it done."

It's not just the men who are giving him grief about Scope Fest. "All of my female friends have been laughing hysterically at what big babies we all are," he said.

And he doubts his wife, Margot, would seize the idea to initiate, say, a Mammogram-arama with the girls. "She's not an escapist like me. She's more responsible, more mature."

But that won't stop Merrick from brainstorming his next procedure party. That night, nibbling from the puupuu platter and glowing from that rum-based Scorpion, Merrick asked, "Would you be interested in following me to my vasectomy?"

Colonoscopies make for most unusual birthday party

"My wife expects they'll find my head up there," Jack Merrick quipped minutes before being sedated for his colonoscopy.
But for all the good-natured humor that infused Scope Fest, the danger of colon cancer was on the minds of its participants.

Merrick spoke of a friend's co-worker who recently succumbed at age 38, and recalled that Katie Couric's husband, Jay Monahan, was only 42 when he lost his fight.

Merrick buddy Don Chiesa, 40, noted that Scope Fest came three years to the day after his father-in-law died of colon cancer, prompting his fellow patients to raise their glasses in an unusually solemn toast.

And there was this disturbing observation from Dr. Liza Capiendo: "The scary thing is, I've been finding cancer in people in their 30s with no family history (of the disease)."

White House press secretary Tony Snow, 51, announced last week that his cancer has resurfaced and spread to his liver despite having had his diseased colon removed in 2005.

The American Cancer Society predicts that about 154,000 Americans will be diagnosed with colorectal cancer this year, about 23,000 more than its 1998 projection.

More than 52,000 Americans will die of the disease, the third-leading cause of cancer deaths


in men and women. The good news is the number of fatal cases is declining, a trend researchers attribute to greater awareness of colonoscopy for both detection and prevention.
Couric's well-publicized 2000 screening on the "Today" show triggered a 19 percent increase in colonoscopy procedures.

The American Cancer Society urges all Americans to get screened for colon cancer beginning at age 50, or earlier if there is a family history of colon cancer, a personal history of cancer in the breast, lymph nodes or other glands, or any symptoms that may be cancer-related.