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John Elder Robison

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Mother Goldstein

Asperger’s Syndrome Gets a Very Public Face

By TARA PARKER-POPE

Published: December 4, 2007

Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.

But what makes the 21-year-old Ms. Kuzmich different from others with Asperger’s is that for the past 11 weeks, her struggle to cope with her disability has played out on national television.

She is one of 13 young women selected by the supermodel Tyra Banks to compete on the popular reality television show “America’s Next Top Model.” The addition of Heather Kuzmich to an otherwise superficial show has given millions of viewers an unusual and compelling glimpse into the little-understood world of Asperger’s.

The disorder, considered a form of autism, is characterized by unusual social interaction and communication skills. Aspies, as people with the condition like to call themselves, often have normal or above-average intelligence, but they have trouble making friends and lack the intuitive ability to gauge social situations. They fail to make eye contact and often exhibit a single-minded fixation that can be both bizarre and brilliant.

By definition, people with Asperger’s are outside the mainstream. Even so, in recent months the syndrome has been cast into the limelight. “Look Me in the Eye,” a memoir about living with Asperger’s by John Elder Robison, who once created special effects for the rock band Kiss, has been a best-seller. In August, the Pulitzer Prize-winning music critic Tim Page wrote a poignant article for The New Yorker about life with undiagnosed Asperger’s.

Mr. Robison says the popular appeal of these stories may be due, in part, to the tendency of people with Asperger’s to be painfully direct — they lack the social filter that prevents other people from speaking their minds.

“It’s important because the world needs to know that there are tremendous differences in human behavior,” said Mr. Robison, whose brother is the writer Augusten Burroughs. “People are all too willing to throw away someone because they don’t respond the way they want. I think books like mine tell the world that there is more to us than that.”

But while Mr. Robison and Mr. Page tell the story of coping with Asperger’s from the perspective of men in their 50s, Heather Kuzmich is just beginning her life as an adult with the disorder. And it is often painful to watch her transition from socially awkward adolescent to socially awkward adult.

A gifted art student from Valparaiso, Ind., she has a lean and angular look well suited to the fashion industry. But her beauty doesn’t mask the challenges of Asperger’s. The show requires her to live in a house with 12 other would-be models, and cattiness and backbiting ensue. Early in the show, she appears socially isolated, the girls whisper about her within earshot, and viewers see her crying on the phone to her mother.

One girl is frustrated when Heather, concentrating on packing a bag, doesn’t hear a request to move out of the way. At one point, the others laugh when they stake out their beds and Heather has no place to sleep.

“I wish I could get the joke,” Heather laments.

“You. You’re the joke,” retorts another model, Bianca, an 18-year-old college student who is from Queens.

But while Heather’s odd mannerisms separate her from her roommates, those same traits translate as on-the-edge high fashion in her modeling sessions. In interviews on camera, she often glances to the side, unable to hold eye contact. But Ms. Banks, the ’60s-era model Twiggy and the fashion photographer Nigel Barker, who all appear on the show, marvel at Heather’s ability to connect with the camera. The pop star Enrique Iglesias is so taken by her haunting looks that he chooses her for a featured role in a music video.

In an interview last week, Ms. Kuzmich played down the conflict with the other contestants, saying many more “civilized” exchanges weren’t broadcast. “They didn’t make fun of me that much,” she said.

She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said.

To her surprise, she was voted the viewer favorite eight weeks in a row, making her one of the most popular contestants in the show’s four-and-a-half-year history. “I’m used to people kind of ignoring me,” she said in the interview. “At first I was really worried people would laugh at me because I was so very awkward. I got the exact opposite.”

Heather made it to the top five, but flubbed her lines while filming a commercial. Later, she got hopelessly lost in Beijing, managing to meet with only one out of five fashion designers. She was eliminated last week, but has since made appearances on “Good Morning America” and “Access Hollywood.” She says she hopes to continue modeling and eventually become a national spokeswoman for Asperger’s.

“I had no idea it would be this big,” she said. “My mom is beside herself. She watched me when I was a kid not have any friends, and she saw me struggle. She’s glad people are starting to understand this.”

Pediatricians urge autism screening

CHICAGO - The country's leading pediatricians group is making its strongest push yet to have all children screened for autism twice by age 2, warning of symptoms such as babies who don't babble at 9 months and 1-year-olds who don't point to toys.

The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.

Symptoms to watch for and the call for early screening come in two new reports. They are being released by the American Academy of Pediatrics on Monday at its annual meeting in San Francisco and will appear in the November issue of the journal Pediatrics and on the group's Web site — http://www.aap.org/.

The reports list numerous warning signs, such as a 4-month-old not smiling at the sound of Mom or Dad's voice, or the loss of language or social skills at any age.

Experts say one in 150 U.S. children have the troubling developmental disorder.

"Parents come into your office now saying 'I'm worried about autism.' Ten years ago, they didn't know what it was," said Dr. Chris Johnson of the University of Texas Health Science Center in San Antonio. She co-authored the reports.

The academy's renewed effort reflects growing awareness since its first autism guidelines in 2001. A 2006 policy statement urged autism screening for all children at their regular doctor visits at age 18 months and 24 months.

The authors caution that not all children who display a few of these symptoms are autistic and they said parents shouldn't overreact to quirky behavior.

Just because a child likes to line up toy cars or has temper tantrums "doesn't mean you need to have concern, if they're also interacting socially and also pretending with toys and communicating well," said co-author Dr. Scott Myers, a neurodevelopmental pediatrician in Danville, Pa.

"With awareness comes concern when there doesn't always need to be," he said. "These resources will help educate the reader as to which things you really need to be concerned about."

Another educational tool, a Web site that debuted in mid-October, offers dozens of video clips of autistic kids contrasted with unaffected children's behavior. That Web site — http://www.autismspeaks.org/ — is sponsored by two nonprofit advocacy groups: Autism Speaks and First Signs. They hope the site will promote early diagnosis and treatment to help children with autism lead more normal lives.

The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof those work.

Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help.

For very young children, therapy typically involves fun activities, such as bouncing balls back and forth or sharing toys to develop social skills; there is repeated praise for eye contact and other behavior autistic children often avoid.

Mary Grace Mauney, an 18-year-old high school senior from Lilburn, Ga., has a mild form of autism that wasn't diagnosed until she was 9.

As a young girl, she didn't smile, spoke in a very formal manner and began to repeat the last word or syllable of her sentences. She was prone to intense tantrums, but only outside school. There, she excelled and was in gifted classes.

"I took her to a therapist and they said she was just very sensitive and very intense and very creative," said her mother, Maureen, 54.

Pediatricians should send such children for "early intervention as soon as you even think there's a problem," Johnson said.

Dr. Ruby Roy, a pediatrician with Loyola University Medical Center, who treats at least 20 autistic children, applauded the reports.

"This is a disorder that is often missed, especially when it's mild, and the mild kids are the ones ... who can be helped the most," Roy said.

Dr. Dirk Steinert, who treats children and adults at Columbia St. Mary's clinic in suburban Milwaukee, said the push for early autism screening is important — but that it's tough to squeeze it into a child's regular wellness checkup.

Some pediatricians have tried scheduling a visit just to check for developmental problems, when children are 2 1/2. The problem is that insurance doesn't always cover these extra visits, Steinert said.

AS and relationships that work

This is a forum for those who are in a relationship where Asperger's Syndrome is either diagnosed or suspected (either in your partner or in yourself) and who are looking for ways to cope and overcome the difficulties that AS brings. This forum is for for people who are actively trying to improve their relationship, not just survive it. Please try to keep posts positive in nature. It's ok to explain things that haven't worked, but please do it in a way that assists others in their search for solutions and understanding, not to discourage or squash hopes.

Autism Speaks - Walk Now for Autism 2007 - this Saturday, Oct. 27

This Saturday, October 27, my family and I will be participating in a very special event, WALK NOW For Autism benefiting the Autism Speaks/Cure Autism Now Foundation. WALK NOW FOR AUTISM unites the community in support of those affected by autism with a noncompetitive 5K walk and community resource fair, where parents meet a variety of autism service providers and kids enjoy arts & crafts, moon bounces and other fun activities. Experience the power of thousands united by a single cause by joining WALK NOW FOR AUTISM: the fast-growing, family-friendly community dedicated to raising necessary funds for autism research, awareness and outreach.

You may be wondering why Cure Autism Now and WALK NOW are so important to me and my family. My involvement stems from a very personal and deep emotional contact with this complicated disease.

My 8-year-old son, Sean, was diagnosed with a form of Autism, Asperger's Syndrome, five years ago. I am very proud of Sean and impressed with his progress so far thanks to hard work on his part, our part and an excellent program within the Cy-Fair School District.

I strongly feel that I can have a direct impact on finding causes and cures for autism. I also feel strongly that Autism Speaks/Cure Autism Now is a wonderful organization which has been instrumental in furthering autism research. In 1995, when Cure Autism Now was founded there were only 12 researches focused solely on autism. Today there are over 300. That is progress. WALK NOW gives us a tangible way to help the nearly 1.5 million other Americans affected by autism and related disorders.

I am asking for your support in helping us raise money for this worthy cause. Any contribution you are able to make would be greatly appreciated, but I ask you to give big as there is a big need for further research. My personal goal is to raise $500.00 for Cure Autism Now and I hope to far exceed that goal. Last year I raised over $750!

It is easiest to donate online by going to our personal webpage at

Sean's Walk Now For Autism page

If you are unable to donate online, you can print out a donation form from that page and hand it to me. All checks should be made payable to Cure Autism Now.

Please feel free to forward this e-mail on.

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Why WALK NOW FOR AUTISM?
Every 20 minutes another child is diagnosed with autism. A cure must be found NOW. Autism is a neuro-developmental disorder that is commonly diagnosed by the age of three, and in some cases, as early as one year. Affecting one in every 150 children born today, autism is characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotypical patterns of behavior. The money raised at WALK NOW FOR AUTISM supports Autism Speaks / Cure Autism Now's mission to find the causes, effective treatments and a cure for autism through funding essential biomedical and scientific research.

About Autism Speaks and Cure Autism Now
Autism Speaks and Cure Autism Now are dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure. Cure Autism Now was founded in 1995 by Jonathan Shestack and Portia Iversen, parents of a child with autism. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, grandparents of a child with autism. Autism Speaks and Cure Autism Now (CAN) recently announced plans to combine operations, bringing together the two leading organizations dedicated to accelerating and funding biomedical research into the causes, prevention, treatments and cure for autism; to increasing awareness of the nation's fastest-growing developmental disorder; and to advocating for the needs of affected families. Together the organizations have awarded autism research grants valued at more than $50 million. To learn more about Autism Speaks, please visit www.autismspeaks.org. To learn more about Cure Autism Now, please visit www.cureautismnow.org .

About Autism
Autism is a complex neurobiological disorder of development that lasts throughout a person's lifetime. Because persons with autism exhibit different symptoms or behaviors, ranging from mild to serious, autism is a "spectrum" disorder, or a group of disorders with a range of similar features.

Children with autism have difficulty communicating and interacting with others. Many individuals with autism seem to retreat into isolation, or fixate on a word, an object, or an activity.

Sometimes symptoms are seen in infancy, while other children develop normally for a year or more before they begin to slip into their own private world. At best, a high functioning person with autism may simply seem eccentric, a loner. At worst, a person with more profound autism may never learn to speak or care for themselves.

You are never prepared for a child with autism. You will gradually come to believe it, but never fully accept it, get used to it, or get over it. You put away the hopes and dreams you had for that child - the high school graduation, the June wedding. Small victories are cause for celebration - a word mastered, a dry bed, a hug given freely.

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I look forward to hearing from you. I thank you very much!

Always,

Marc

McCarthy Calls Carrey 'Autism Whisperer'

NEW YORK -- Jenny McCarthy worried about finding a good man after her son, Evan, was diagnosed with autism two years ago. Then Jim Carrey came along. "Beyond doubt it was written in the stars that Jim and Evan were a pair," the 34-year-old actress tells People magazine in its Oct. 1 issue.

"He's actually helped Evan get past some obstacles I couldn't. I sometimes call him the autism whisperer. He speaks a language Evan understands, and Evan feels safe with him."

McCarthy and Carrey, 45, went public with their romance last year. Though she's in love, McCarthy has no plans to marry the twice-divorced actor.

"There will be no certificate," she says. "It goes far deeper than that. Jim came into our life with an open heart and open arms. He's learned a lot about autism. He listens. The power of listening. It can move mountains."

McCarthy and film director John Asher filed for divorce in August 2005, after six years of marriage. Earlier that year, Evan, now 5, was diagnosed with autism.

McCarthy, who starred on MTV's "Singled Out," details Evan's progress in her new book, "Louder Than Words: A Mother's Journey in Healing Autism."

She says Carrey was curious about Evan — in a good way. But she was nervous about introducing them.

"He was intrigued," she says. "He asked questions. Still, it took me about a few months to bring Evan over."

Jenny McCarthy Opens Up About Her Autistic Son

Jenny McCarthy vividly remembers the harrowing realization three years ago that her son Evan, now 5, was autistic.

"It started with hand flapping," McCarthy, 34, told Oprah Winfrey on Tuesday's show. There were other telltale indications in her child's behavior, but as McCarthy said, "You only look for the good signs."

Then came the day when Evan suffered a seizure, which doctors – once she got him to the hospital – blamed on a fever. Three weeks later, however, Evan got "a stoned look on his face" while McCarthy and the boy were visiting her parents.

This was another seizure, she thought, "but this one is different. He's not convulsing." Instead, "foam was coming out of his mouth, (and) and after a few minutes, I felt his heart stop," she said.

When the paramedics arrived, she told them about Evan's heart. "They looked at me like I was crazy. I don't know why," she said. Only, as they discovered for themselves, the child's heart was no longer beating, so they administered CPR.

"Why, God? Why me ... Why? Why? Why?" McCarthy recalled thinking in those desperate moments, but then, she said, an inner voice came over her. "Everything's going to come out okay."

Because there was no pediatric hospital near her parents' home, Evan and McCarthy drove three hours back to Los Angeles, during which time Evan suffered several more seizures.

Initially, neurologists believed Evan had epilepsy, by McCarthy's "mommy instinct," as she called it, thought that not to be the case. Finally, a doctor said to her, "'I'm sorry, but your son has autism.' My mommy instinct said, 'This man is right.' I didn't want to believe him ... but ... this man is right. I felt like death."

McCarthy, however, sprung into action. She researched autism on the Internet and was struck by a message that popped up in a corner of the screen. Autism, it told her, "is reversible and treatable."

She worked diligently with her son, putting him on a wheat-free, dairy-free and artificial-additive-free diet to detox his system, and her mantra – which she says is producing results – is "hope, faith, recovery."

McCarthy, who first revealed Evan's condition last May on The View, has put her experiences down in a just-published book, Louder Than Words: A Mother's Journey in Healing Autism.

Evan is McCarthy's son with director John Asher. The couple divorced in 2005, after six years of marriage – which, McCarthy told Winfrey, was strained because of their son's condition.

But, McCarthy also said, there's a new man in her life: Jim Carrey. "He's the 'funny, cute guy' in the book," she told Winfrey and the TV audience. And, she stressed, he is there for Evan.

On the Web site for the Oprah show, McCarthy and actress Holly Robinson Peete, who has discussed her own child's autism with PEOPLE, will answer questions related to the condition. Click here.

"Keep going," said McCarthy as final advice to parents of autistic children. "And we're going to be there online."

Scientists eye an enzyme as target in fighting autism

CHICAGO (AFP) - US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.

In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.

In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.

The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.

"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.

MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.

These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.

The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.

The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.

In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.

The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.

The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.

Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.

"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.

The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.

Court to focus on vaccine, autism Monday

WASHINGTON - Thousands of families that allege vaccines caused their children's autism are preparing for their day in court, which could bring them vindication and compensation.

Since 1999, more than 4,800 families have filed claims with the government alleging their children contracted autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.

Previously, large scientific studies have found no association between autism and vaccines containing thimerosal.

But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school. If they prevail in the courts, the families are entitled to compensation from a multibillion-dollar trust fund.

The first of what eventually could be nine test cases from those claims is the subject of the hearing opening Monday in the U.S. Court of Federal Claims. Three special masters appointed by the court will preside over the hearing, expected to last through June 29.

Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.

Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.

In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines.

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On the Net:

U.S. Court of Federal Claims: http://www.uscfc.uscourts.gov

Mild autism has 'selective advantages'

Asperger Syndrome can improve concentration

By Sue Herera

Anchor

CNBC

Updated: 5:42 p.m. CT Feb 25, 2005

What happens when children with autism grow up? It may sound paradoxical, but some with the mildest form, Asperger Syndrome, may turn out to be stars.

People with Asperger's often have extreme difficulty interacting socially, preferring to focus on narrow fields of interest. But often they're able to pursue those interests with great intensity. Geniuses throughout history, including Albert Einstein, Andy Warhol and Emily Dickinson, have all been thought to have had Asperger's. And now Nobel Laureate Vernon Smith has decided to speak openly about what he calls the deficiencies and the selective advantages of Asperger's.

“I can switch out and go into a concentrated mode and the world is completely shut out,” he said in a recent interview. “If I'm writing something, nothing else exists.”

Smith received the Nobel Prize in 2002 for inventing the field of experimental economics, which uses laboratory methods to test economic theories. Smith says his capacity for deep concentration contributed to his ability to win the Nobel Prize.

“Perhaps even more importantly, I don't have any trouble thinking outside the box,” he said. “I don't feel any social pressure to do things the way other people are doing them, professionally. And so I have been more open to different ways of looking at a lot of the problems in economics."

CNBC: Did you feel like you seemed strange in the eyes of other people?
Smith: Oh, yes.
CNBC: How so?
Smith: Sometimes I'm described as "not there" in a social situation. You know, a social situation that lasts for a couple of hours I find it to be a tremendous amount of strain, so I've been known just to go to bed and read.
CNBC: What led you to teaching? Teaching is very social and you said earlier you don't do well in social situations.
Smith: Teaching ... has forced me into being more social, but it's on professional dimensions that I'm comfortable with. We're talking about things that I have a lot of experience with, and I can relate to students very easily in that mode.
CNBC: Because they're in your world?
Smith: Yes, exactly, that's a good way to put it, they're in my world. And there are maybe worlds out there that I don't understand, so I don't go there.

Smiths' wife, Candace, says it hard at times to understand why her husband can't be part of her emotional world.

"He might not always know what he feels," she said. "In fact, many times he doesn't. He'll say, 'I don't know. What do you mean? ..."

Smith says she's found comfort in the Asperger's label because it's helped put some of her husband's actions into perspective.

"If you didn't have these words like autism or Asperger's as entry words into your own experience and understanding then you could categorize a child or adult as unemotional, cold, insensitive," she said. "Many people don't understand Vernon and they conclude wrongly about him."

Some doctors who treat people with Asperger's, like Dr. Ami Klin at Yale University, say Smith's success is not typical of people with this disability.

"The vast majority of individuals with Asperger Syndrome need help — without that help they won't be able to do very well," he said. "The individuals that I know have to overcome a great deal of difficulty to maximize their potential and get the things in life they deserve."

CNBC: There are people who think that a number of highly influential executives may have Asperger's or are on the autism spectrum. Is that society making a judgement or is it coming to realize that there are different kinds of minds?
Smith: I think it's different kinds of minds, and the recognition that certain mental deficiencies may actually have some selective advantages in terms of activities. We've lost a lot of the barriers that have to do with skin color and with various other characteristics. But there's still not sufficient recognition of mental diversities. And we don't all have to think alike to be communal and to live in a productive and satisfying world.

Bob Wright: ‘I want my grandson back’

The vice chairman of GE and chairman and CEO of NBC Universal talks about his family's personal crusade to cure autism

By Bob Wright

Vice chairman of GE and chairman and CEO of NBC Universal

TODAY

Updated: 9:34 a.m. CT Feb 25, 2005

Autism is in the news, and it’s about time. On Monday, the Centers for Disease Control launched a new education initiative designed to educate parents of young children about the early signs of developmental disorders such as autism. Among mainstream print media, The New York Times is following this story closely, publishing more than two dozen articles on autism in the past six months. Newsweek has made autism the cover story of its latest issue. NBC News has devoted significant airtime this week to exploring every aspect of this disorder, with reports on “Today,” “Nightly News,” CNBC, MSNBC, Telemundo, the owned NBC stations, as well as on this news Web site. Autism has also been featured recently in entertainment shows such as “Without a Trace” and “Scrubs.”

Why the flurry of interest? Here’s a clue: 1 in 166. That’s the chance a baby born today will have autism. This represents a dramatic increase from a decade ago, when experts estimated the incidence rate to be 1 in 2,500.

What explains this sudden increase? No one knows for sure. What is clear, however, is that autism demands more public awareness, more understanding, and more funding, both private and public.

I know the people of NBC News take great pride in the work they have done this week in shedding light on the mystery of autism. I’m grateful for their efforts. I say this not only as the head of NBC Universal but also as someone who has a personal stake in this issue.

Last March, our grandson was diagnosed with autism. We have watched helplessly as an apparently normal toddler lost his ability to interact with the outside world. My wife, Suzanne, likens it to a kidnapping, as if someone has taken away the life he was meant to live. We all want nothing more than to have him back where he belongs, restored to his family.

Since the diagnosis, our family has been on a mission to learn all we could about autism, and help ensure our grandchild receives the best therapy and treatments available. Frankly, it’s been a difficult and frustrating challenge. We discovered, to our surprise, just how scarce the resources are for parents dealing with autism, and how thin the knowledge. We had so many questions, and instead of answers, we found a bewildering array of theories and guesses. We found it hard to believe that a disorder with the frequency of autism commands so little public attention and such meager resources devoted to research, compared to other, less common childhood disorders.

Autism is the most widely diagnosed developmental disability in the nation, yet autism research receives only $15 million per year from private sources, compared to more than $500 million for conditions like childhood cancers, muscular dystrophy, juvenile diabetes, and cystic fibrosis — all of which combined together are less common than autism.

To help close this gap in awareness and resources, we are announcing the launch of a new organization, Autism Speaks, devoted to educating the public about autism, facilitating and funding research, motivating private and governmental resources, and, ultimately, helping to find a cure for autism.

Autism Speaks is dedicated to helping families find answers. But neurological disorders are complex, and autism won’t yield its secrets without a struggle. One significant way Autism Speaks will help will be by spearheading the assembly of a large central database of children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials. We believe this will facilitate the large-scale longitudinal studies and clinical trials that will help lead us to a cure.

Yes, I’m keeping my day job. But I also want my grandson back. So, for as long as it takes, Suzanne and I are going to be devoting whatever extra energy we can muster to helping Autism Speaks achieve its goals. Autism is a vexing puzzle. We are committed to finding the answers.

Bob Wright is the vice chairman of GE and chairman and CEO of NBC Universal, the parent company of NBC News. For more information about Autism Speaks, visit www.autismspeaks.org or call 1-888-AUTISM-5.

I'm not so interested in a 'cure' as I am in prevention. If I was offered the chance today to 'cure' my son, I don't know if I would do it. My son is a unique individual who is very special, I wouldn't want to take anything away from him. - Marc

Fact file - Autism signs and symptoms

Children with autism and other autism spectrum disorders typically display a range of identifiable symptoms. By being aware of these signs, parents can help spot the disorder at an earlier age, which greatly improves a child’s overall prognosis.

Communication

-- Delay in, or total lack of, development of spoken language
-- Difficulty initiating conversation
-- Echolalia (repeating words or phrases instead of using normal language)
-- Doesn’t respond to name
-- Doesn’t use or respond to gestures and other nonverbal cues

Social interaction

-- Doesn’t point to objects or show them to others
-- Doesn’t make eye contact at appropriate times
-- Doesn’t look at other people’s faces as much
-- Doesn’t respond to facial expressions or body language
-- Doesn’t smile back at others
-- Lack of peer relationships appropriate to age level
-- Less interest in other children
-- Not motivated by praise or physical affection
-- Doesn’t clearly demonstrate sympathy or empathy

Behaviors

-- Engages in highly repetitive play
-- Obsessively preoccupied with a specific interest or object
-- Lack of make-believe or imitative play
-- Dependent on routines, rituals and familiarity
-- Repetitive body movements (hand or finger flapping, eye rolling, twisting, spinning, rocking, etc.)
-- Preoccupation with parts of objects
-- Easily overstimulated by noises, crowds or lights
-- Extreme dislike of certain sounds, textures or situations
-- Doesn’t have strong response to pain

Parents blaming autism on vaccines go to court

Scientists dispute claims that mercury in shots led to kids’ condition

WASHINGTON - Science has spoken when it comes to the theory that some childhood vaccines can cause autism. They don’t, the Institute of Medicine concluded three years ago.

Soon, it will be the court’s turn to speak.

More than 4,800 claims have been filed against the federal government during the past six years alleging that a child contracted autism as a result of a vaccine. The first test case from among those claims will be the subject of a hearing that was to begin next Monday in a little-known “People’s Court” — the U.S. Court of Federal Claims. A special master appointed by the court will hear the case.

For the parents filing a claim, there is the potential for vindication, and for financial redress.

The test case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing the preservative thimerosal. That preservative, which contains a form of mercury, is no longer in routine childhood vaccines. However, it is used in influenza vaccines.

One of the parents who has filed a claim against the federal government and has great interest in the case is Scott Bono of Durham, N.C. His son, Jackson, 18, has autism. While acknowledging the findings of the IOM’s study, Bono believes those findings were preordained by the federal government.

“The charge before the IOM committee was: ‘You’re not going to find anything wrong here,”’ Bono said.

He said that parents of children with autism have been marginalized, but they see specific outcomes in their children that are consistent with exposure to mercury. And those outcomes did not present themselves until after they received their vaccinations. In short, the children tell the story better than the numbers, he said.

“It’s a thrill in the sense that, for the first time, the stories of these children are going to be heard in court,” Bono said.

No correlations found
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines.

Dr. Paul Offit, who developed a vaccine for the rotovirus, is chief of the division of infectious diseases at the Children’s Hospital of Philadelphia. He said epidemiological studies pick up minute, almost invisible differences in the populations that have received a vaccine versus those that have not.

For example, a swine flu vaccine in the 1970s caused the sometimes paralyzing Guillain-Barre syndrome in 1 out of 100,000 cases, he said.

But no such correlations have been found for autism, which affects about 1 out of 150 children, he said.

“It should be easily picked up,” he said. “It hasn’t been and the reason it hasn’t been is because vaccines do not cause autism.”

Offit said mercury is part of the natural environment. There’s no escaping it and, in fact, children will get more mercury from breast milk than they get from a vaccine. Yet, he’s frustrated when he hears lawmakers speak of having zero tolerance for mercury.

“On this planet you can’t have zero tolerance for mercury,” he said. “You would have to move to another planet.”

Working too closely?
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Meanwhile, classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.

The report from the Institute of Medicine pointed to five large studies, here and abroad, that tracked thousands of children since 2001 and found no association between autism and vaccines containing the preservative thimerosal.

Members of the National Autism Association see drug manufacturers and the federal government as working too closely together to the point that the federal government is working to protect the industry from liability. The association says its mission is to raise awareness of environmental toxins as causing neurological damage that often results in an autism or related diagnosis.

Bono, a member of the association, said he doesn’t believe his son was intentionally poisoned.

“I just want someone to step up and say, ‘You’re right, this did happen,”’ he said.

During the hearing, lawyers for the parents were expected to present their expert testimony during the first week. Then lawyers representing the federal government were expected to present their case. The hearing was to be open to the public.

Officials planned to post transcripts on the court’s Web site about 24 hours after each day’s proceedings.

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Lost Boys: Autism and My Son

They used to be thought of as loners, misfits, even geniuses. Now they're being labeled "autistic." But here's the scary part: The diagnosis may boil down to an excess of maleness.

By Lou Schuler, Men's Health

''I have mutant superpowers.'' -- Harrison, 8, striking up a conversation with an employee at a sporting-goods store.

Kimberly and I stared at the child psychiatrist, not sure how to react.

His question to us—"Have you ever considered that what you have here is a perfectly normal boy?"—had been at once ridiculous, and one we wished we could have answered in the affirmative. This shrink was only the latest in a long line of evaluators, and for the few minutes the doctor saw him, Harrison could have passed for a normal, if hyperenergetic, kid.

But we knew better.

Our son, at 8 years old, is a beautiful child, with hair as red as the Encyclopaedia Britannica, blue eyes that make you wonder why people made such a fuss over that Sinatra guy, and a mischievous smile that turns his freckled cheeks into matching whoopee cushions. All this sits on a frame so gangly that, when he does his gliding walk up on the balls of his feet, you sometimes get the impression that his magnificent head is self-propelled, rather than a part of the natural apparatus.

And, yes, my wife and I would love to consider him normal.

That would mean we could occasionally hire a babysitter for him and his sisters and go out to see a movie.

That would mean we could sign him up for sports teams and summer camps and swimming lessons without making sure that a parent or aide would be with him every minute, or that the instructor had a background in special education for kids like Harrison.

That would mean every day wouldn't start with "Harrison, have you taken your medicine?" And almost every weekday afternoon wouldn't include a therapist in our home, trying to teach him how to approach people or start a conversation. And every night wouldn't end with an epic battle between his spiking energy level and our plummeting ones.

But most of all, it would mean the psychiatrist was right, that Harrison isn't autistic. That he's just a boy being a boy. Though the line between that and autism isn't always perfectly clear, it's one we know Harrison may have crossed the moment he was conceived.

We didn't have that "aha!" moment when we realized our boy was different, just a series of signs that he wasn't developing normally. Harrison didn't exhibit the speech delays that often signal autism—he's fantastically articulate—but his behavior was always behind that of other children. Kimberly, my wife, once returned home from a playdate in tears after she'd had to drag a kicking and screaming Harrison out of someone's house. Other times, she was just exhausted by his behavior, his difference, his oddness. If he wasn't making strange noises, he was flapping his arms or rolling around on the ground. Even when he did things that seemed normal, he did them apart from the other kids in the room.

Still, the first time someone dropped the A-bomb on us, we felt as if we'd been slapped.

"I think he's autistic," my younger sister blurted out during a family Christmas gathering, when Harrison was 7 weeks shy of his third birthday.

''The truth can't hurt me. I learned that myself.'' -- Harrison, 7, describing how he feels when we talk about his condition.

Christmas with the Schulers was always a free-for-all, but this year it had a different tone. Almost every adult conversation was interrupted by a kid whose report started with "Harrison took . . ." or "Harrison hit . . ." If he wasn't grabbing his cousins' toys and running away, he was knocking down their house of Lincoln Logs or screaming, "I didn't want this!" after opening a gift from his grandmother.

Kimberly and I took the label "autistic" as an insult, but my sister didn't mean it that way. She's a teacher in a public school, and she's seen her share of pathologies. Her son had been diagnosed with attention deficit disorder—ADD. We all conceded that Harrison had ADD, plus something else that his prescription Concerta—a timed-release competitor of Ritalin—didn't reach.

What that was, no one could say, although we collected our share of alphabet-soup opinions. First, when he was 4, we were told he had NLD, a nonverbal learning disorder. He had trouble with fine motor coordination, meaning that he struggled to grasp and use pencils and eating utensils. In stressful situations he didn't make eye contact with people. In his early years, he seemed to have a photographic memory—but couldn't read human facial expressions or tones of voice. On dozens of occasions, I had to get in his face and scream before he understood that I was angry with him.

Another psychiatrist gave him the label PDD-NOS: pervasive developmental disorder, not otherwise specified. I have the evaluation in front of me: "Mr. Schuler reports strange behaviors, such as when Harrison is playing with other children, he runs around in circles rather than engaging them."

But there was more than that; truly baffling stuff, like the period when he licked things (including people and pets), and the bizarre tantrums he threw whenever there was a change in routine. Finally, when Harrison was 6, a psychiatrist diagnosed him with Asperger's syndrome, a form of autism in which words and academic achievement come easily, but social interactions are virtually impossible. And that's when we finally began to understand what we were up against.

A preschool principal considered Harrison's disabilities so severe that she advised us to find a good lawyer. We were in for a lifetime of legal battles, she warned, if we wanted to get our son the services he needed. It hasn't been the legal jihad the schoolmarm predicted. But dealing with doctors, school officials, and therapists has become Kimberly's de facto full-time job. And it doesn't look as if it will come with retirement benefits.

Then there's the simple matter of keeping a kid with autism alive and healthy. We've had our share of scares, but our experiences pale compared with those of other parents of autistic kids.

"Dan was never out of our sight for more than 45 seconds before he was 5," says Mark Reuter, Ph.D., a psychologist in private practice in Tinton Falls, New Jersey, and Kimberly's uncle. His son Dan was diagnosed with autism. "He would wander off in whatever direction he was visually pulled."

Reuter tells one story that chills us every time we hear it: The family was taking a vacation when Dan was 5. He started walking away, down a beach, and Reuter followed him, staying about 25 yards behind. Dan walked in a straight line for 35 minutes, until he reached a jetty and couldn't go any farther. Then he turned around and started walking back.

"I stood still," Reuter recalls. "When he came within maybe 20 yards, he looked up, saw me, got a look of recognition on his face, and then walked right past me."

Imagine a child who would walk in a straight line for 35 minutes, with no concept of fear of strangers or detachment from his parents, and you have an idea of what life with autism is like, every day, every waking hour.

''I can be part of the civilization of Harrisons.'' -- Harrison, 6, upon learning that other children have the same first name.

If autism were a growth stock and you'd bought a few shares when it went public in 1987, you'd now be rich beyond your wildest dreams. Before that year, autism was considered a rare condition, and was usually accompanied by a degree of mental retardation.

A change in diagnostic criteria in 1987 opened the door for about a third more children to be classified or reclassified as autistic. Then, in 1994, Asperger's syndrome—a type of high-functioning autism found in people with average to above-average intelligence—was added to the Diagnostic and Statistical Manual of Mental Disorders, setting the stage for the still-rising wave of autism diagnoses.

How big a wave? In 1987, 2,778 autistic people got some assistance from the state of California. In 2002, 20,377 received services, and about 70 percent of them were 14 or younger. Right now, the Autism Society of America estimates that one in every 250 kids born is autistic, and about four of five of them are male. So I'll do the nasty math for you: About 0.64 percent of male children are autistic, or one in every 156. So if autistic kids could have buddies in the traditional sense, Harrison would have plenty—maybe 200,000 in America.

There are plenty of theories—some of them remarkably paranoid—about where the surge comes from. One common theory—that autism is a side effect of a mercury-based preservative in childhood inoculations—has been repeatedly debunked. But a 2003 study from the Boston University school of medicine might be closer to the truth. It found that as autism diagnoses have risen 25 percent per year in the United States, reports of other behavioral disorders have fallen by 20 percent. In other words, a generation ago a kid who showed academic ability but couldn't seem to control his emotions or follow rules might've been classified as having an "oppositional-defiant" disorder. A boy with an all-consuming interest in one subject—a hallmark of Asperger's—might've been given the "obsessive-compulsive" tag. (Or maybe just "hobbyist.") Today, both conditions might be lumped under the heading "autistic."

No two kids with autism are exactly alike, but all types of autism share a common trait: "We're talking about a fundamental difference in wiring," says Fred Volkmar, M.D., a child psychiatrist and autism researcher at Yale and the author of Healthcare for Children on the Autism Spectrum.

"I could be looking at a car, they could be looking at a face, and we'd be using the same parts of our brains."

Most of us, when we're looking at a face we're seeing for the first time, use a part of the brain called the fusiform gyrus to process the visual information. We use another part, the inferior temporal gyrus, to look at objects. Research done at Yale showed that autistic people tap the inferior temporal gyrus for both unfamiliar people and objects. So for a lot of autistic kids, the world is only objects. Which accounts for their failure to empathize with their peers or parents, and their difficulty making friends. If you've ever felt frustrated enough to kick the tire jack or pound your fist into the wall, you know how they feel when a person frustrates them.

There are other differences, as well. A normal brain has more bloodflow on the left side—the part that handles language and analytical tasks—than on the right, the creative and artistic side, which is also the area of the brain that stores images.

But an autistic brain has equal bloodflow on both sides, meaning that analysis is shortchanged. So an autistic boy may not be able to comprehend nuances in a conversation. Understandably, he'll also have trouble initiating a conversation. But that same boy may have perfect pitch, a photographic memory, or, in extreme cases like that of the Dustin Hoffman character in Rain Man, an ability to "see" numbers that the rest of us can't. It's a compensation, but it's paid for with a lifetime of isolation.

Bloodflow giveth, and bloodflow taketh away.

''What's the point of having a big brain if I can't use it to store a few pictures?'' -- Harrison, 8, after flexing his photographic memory.

The word "autism" was coined more or less simultaneously by two psychiatrists toward the end of World War II. Dr. Leo Kanner, a child psychiatrist at Johns Hopkins University in Baltimore, used the word to describe kids who seemed to be in their own world ("autos" is the Greek word for "self"). Dr. Hans Asperger, in Austria, used the phrase "autistic psychopathy," observing that some very intelligent, even very successful, people could be stuck inside the labyrinths of their own minds.

Dr. Asperger never met my grandfather, Frederick Schuler. But based on the little I know about Frederick, I think the two of them would've had a lot to talk about. Growing up, my siblings and I were told that Frederick had died during the Depression. We didn't learn until we were adults that he'd been alive and living in our city while we were growing up, and that he died in a mental institution in the late 1960s. Our best guess is that he'd been there a quarter century, at least.

My dad told us only that Frederick worked for railroads and that he was locked up because he memorized train schedules. There must be something more to it than that, given his line of work and all. But it's fair to assume he had Asperger's (train obsessions are a major theme with Asperger's patients, for some reason), and if my son has been accurately diagnosed, it illustrates a point that even Dr. Asperger recognized back in the 1940s: This thing runs in families.

Humans have 46 chromosomes (the two most famous being the X and Y that determine sex). These 46 chromosomes control about 30,000 genes. Out of all that, maybe five to 10 genetic mutations are involved in autism. Current thinking says that the more mutations you have, the hairier it gets.

Combine a man and woman with one or two mutations each, and all hell breaks loose genetically. When my relationship with Kimberly got serious, we both failed to see the genetic minefield we were walking into. I had told her about Frederick, and we knew about Dan, the autistic cousin on her side. But we didn't yet have a name for Frederick's condition, and Dan was so different from Harrison that it took us years to put it all together.

And by then, we'd had two more children. But they are both girls, and make eye contact just fine, thank you.

''There's no law in America that says a 7-year-old white male can't keep a dime he finds at the pool.'' -- Harrison, arguing with his sister about a coin he found.

When Harrison was born, he had abs. I don't mean a six-pack, but a defined ridge separating his obliques from the rest of his abdomen. He also had perfectly round deltoids and a visible trapezius muscle in his upper back. His quadriceps bulged on his hairless little thighs. If you didn't know better, you'd swear someone had spiked his umbilical cord with testosterone.

Which brings me to one of the newest and most intriguing theories about why autistic kids are that way. It's called the "extreme male brain" theory of autism, and it starts with an unusually high amount of testosterone before they're born.

Simon Baron-Cohen, Ph.D., is a Cambridge University psychology professor and the driving force behind the theory. He has found that children exposed to high levels of testosterone in their mother's amniotic fluid have the most trouble making eye contact and forming friendships by age 4.

When they reach manhood, men tend to be systematizers: Our brains have a tendency to organize things unemotionally, to understand events and people by creating categories for them. Women tend to be empathizers, taking other people's feelings into account when trying to analyze situations and events.

All this falls on a spectrum, with some men and women in the middle, equally capable of empathizing and systematizing.

Autistic people, on the other hand, fall way, way out on the male side, leading to the "extreme" aspect of the male-brain theory. Part of the condition leaves them unable to empathize in normal ways. The other component is a tendency toward systematizing. The highest-functioning autistic people—a group that may have included Albert Einstein and Isaac Newton, according to Baron-Cohen—can focus on narrow topics of interest. Newton, for example, got so absorbed in his work that he forgot to eat, and young Albert Einstein was known to repeat the same sentences over and over. Who better to attempt a unified theory of the universe than an obsessive systematizer?

''I just can't do it. My brain won't let me. I don't have a good brain.'' -- Harrison, 4, explaining to his grand-mother why he can't learn to propel himself on the backyard swing set, after she'd tried in vain to teach him.

You would think, with all that extra testosterone, that Harrison and other autistic kids would be athletically inclined. But in fact, the opposite is true. And his misadventures with sports illustrate perfectly why it sometimes breaks your heart to raise a boy like this.

I started this story with a quote from Harrison to an employee of a sporting-goods store. At 8 years old, my son had finally shown an interest in sports, and I'd signed him up for a local soccer team. He was exuberant that day as we tried on soccer shoes. Me, I was terrified. Harrison was sure he'd be a great soccer player, but I knew what was coming.

I was right. He was crushed after the first practice. It was clear he was the worst player on the team, and it wasn't even close. He could barely dribble and couldn't kick the ball more than a few feet. In the first game, the coach put him on the field as a defender, and the first time opposing players came toward him, he stood like a statue while they dribbled around him and scored. He shouted to me that he was tired and he just wanted to go home. I told him he was part of a team and had to keep playing.

And then something clicked. All of a sudden he understood what he was supposed to do. He started attacking the ball, sometimes kicking it away, sometimes forcing the opposing forwards toward the sidelines. Harrison attacked relentlessly. He still couldn't dribble or kick worth a damn, but he'd found a way to play the game, to contribute, to be part of the team.

Maybe the years of behavioral therapy, of dedicated professionals endlessly working with him to help him understand the give-and-take of human interaction, were paying off. Or maybe he'd just found something new to focus his intensity on. See ball. Kick ball! For the first time in his life, he was a player.

Since then, I've noticed a series of differences. I've seen him approach people and try to strike up conversations. Okay, so he scared a kid off by launching into a rant on his fear of lamprey eels. It was an attempt. Normal stuff to other parents, but to us it's the universe reordering itself.

After one soccer practice, as Harrison and I drove home in a spring downpour, I stopped at a local bank. "Dad," he said as I stepped out into the rain, "remember to put your hood up."

I pulled up the hood of my sweatshirt, ran to the ATM, ran back. "Thanks for reminding me to put up my hood. That was good advice."

He seemed to bask in the praise for a moment. "Well, thanks for thanking me."

Our solitary boy had actually focused, however briefly, on someone else's welfare.

And you know what? I'll take that. My genes may have walled him in, but now, almost every day, I see him try to scale the wall, to connect. If he goes on to lead a full and happy life, it'll be a team effort.

But there'll be no question who's the star of that team.

Stephen Wiltshire: The Human Camera

Some sad news...

BEVERLY HILLS, Calif. — Nikki Bacharach, daughter of Burt Bacharach and Angie Dickinson, committed suicide, the songwriter and actress said in a statement Friday.

Nikki Bacharach, 40, suffered from Asperger's Disorder, a form of autism. She killed herself Thursday night at her condo, said Linda Dozoretz, a spokeswoman for the family.

"She quietly and peacefully committed suicide to escape the ravages to her brain brought on by Asperger's," the statement said.

Nikki Bacharach died of suffocation using a plastic bag and helium, said Mike Feiler of the Ventura County coroner's office.

Born prematurely in 1966, Lea Nikki Bacharach studied geology at Cal Lutheran University, but could not pursue a career in the field because of poor eyesight.

"She loved kitties, and earthquakes, glacial calving, meteor showers, science, blue skies and sunsets, and Tahiti," the statement said.

Nikki Bacharach was the only child of Burt Bacharach, 77, and Dickinson, 75, who were married from 1965 to 1981.

It was the second marriage for both Bacharach, the Oscar-winning composer of Raindrops Keep Falling on My Head, and What the World Needs Now is Love, and Dickinson, star of the film Dress to Kill and the TV show Police Woman.

Bacharach has three children from other marriages.