Wednesday, September 10, 2008

Disney motto helped dad, autistic son survive at sea

‘To infinity ... and beyond’ is one of the few phrases 12-year-old responds to

By Michael Inbar contributor
updated 9:40 a.m. CT, Wed., Sept. 10, 2008

Lost at sea with nothing to hold onto amid a dreadful darkness, Florida resident Walter Marino continually called out some of the few words his 12-year-old autistic son Christopher responds to. The pair, swept out in a late-afternoon current near Daytona Beach, had been treading water in shark- and jellyfish-infested waters throughout the night, slowly floating apart.

“I’d be screaming, ‘To infinity ... and beyond!’ ” Marino said, referring to the Disney character Buzz Lightyear’s catchphrase in “Toy Story,” one of Christopher’s favorite movies. “Then I would hear him and it would be more and more and more distant, until finally I couldn’t hear anything.”

Happily — perhaps miraculously — both father and son survived the night, thanks to good Samaritans and the U.S. Coast Guard. Walter and Christopher Marino, along with Walter’s daughter Angela and the children’s mother, Robin Bishop, beamed their way through a joyous interview with Matt Lauer on TODAY Wednesday.

Walter, Christopher and Angela were enjoying a family day at the beach at the Ponce Inlet south of Daytona Sept. 6. Late in the afternoon, Christopher was swimming near his father when he got caught in a current, and his dad paddled rapidly to retrieve him.

“We were both just sucked out,” Marino told Lauer. “The forces just took us out so quickly, it totally took me by surprise.”

Darkness falls
On the beach, Angela could no longer see her father and brother and quickly called 911. The Coast Guard and the Volusia County Beach Patrol launched a search-and-rescue effort, but were unable to locate the pair and called off the search when darkness set in.

Meanwhile, Walter and Christopher treaded water while looking at each other face to face. Christopher, who is largely nonverbal, “watches a lot of Disney movies,” explained his father, and Walter kept calling out Christopher’s favorite Disney lines, including the “Infinity” phrase.

But as the hours ticked off in the dark night, Walter could no longer hear his son. He tried to reconcile himself to the worst.

“I knew in my mind he was gone,” Marino told Lauer. “The only thing that got me through was I could not lose my daughter. I could not let my daughter lose her brother and her father on the same day.”

Around 7:30 a.m. the next morning, fishermen spotted a glint in the water from Walter’s necklace and rescued him. With the fate of Christopher still unknown at the time, Walter had little hope of finding his son alive.

Three long steps
“The Coast Guard asked me if I wanted to be evacuated to a helicopter to go to the hospital, or stay on the boat and continue the search,” he said. “I stayed on the search. They asked me if I wanted to be above or below — I chose to be below, because I knew in my mind that Christopher was gone and I didn’t want to see my son floating facedown.”

After nearly two hours, the Coast Guard asked Marino to come on deck. “That was my Green Mile,” he told Lauer. “I thought they wanted me to come up and identify the body. Those three steps, I just needed help to get to the top.

I got up there and they pointed to the helicopter and said, ‘See that helicopter over there? That has your son, and he’s fine.’

“I never kissed so many Coast Guard men in my life!”

Christopher was picked up some 3 miles from where his father was found, and some 8 miles from shore.

While an animated Marino showered his rescuers with thanks, appreciation — and yes, kisses — he also cited plucky Christopher as a hero, saying the boy actually helped his father get through the nightmare ordeal.

“His lack of fear was calming to me,” Marino said. “He was on an adventure — I mean, he was laughing. It was just a day in the ocean to him. It wasn’t until the jellyfish started stinging that he started to freak out a little bit.”

Marino also offered a shout-out to the animated superhero who helped him communicate with his son. “Buzz Lightyear got us through,” he said.

Rescue team member David Birky said he was awed at Christopher’s resolve. “That kid is an amazing kid,” Birky said. “To tread water for almost 14 hours — I don’t know about you, but I don’t think I could do that. They have amazing willpower to be able to do it.

Wednesday, April 02, 2008

World Autism Awareness Day

World Autism Awareness Day

Living with autism

Are you or is someone you love living with autism? We want to hear your story. How does this condition affect your life, as well your family's? Share what life is like on a typical day. Turn on your camera and record video of yourself speaking about your experiences, and give us a glimpse of your daily routine. Have you found any unexpected silver linings? Send photos and videos that help tell the story of what it's like to have autism.

Living with Autism

Jenny McCarthy: My son's recovery from autism

By Jenny McCarthy and Jim Carrey
Special to CNN

Editor's note: Jenny McCarthy and Jim Carrey are actors and parents actively involved in autism-related causes. McCarthy is the author of the book "Louder Than Words: A Mother's Journey in Healing Autism."

Actress Jenny McCarthy believes that vaccines could have contributed to her son's autism.

(CNN) -- In light of the recent Hannah Poling decision, in which the federal court conceded that vaccines could have contributed to her autism, we think the tide is finally turning in the direction of parents like us who have been shouting concerns from our rooftops for years.

Autism is a debilitating disorder, which according to the Centers for Disease Control and Prevention, is suffered by 1 in 150 kids, making it more common than childhood cancer, diabetes and AIDS combined.

Recently, England and Ireland reported that autism is affecting one in 58 individuals.

Is it any wonder that autism has become many new parents' No. 1 fear?

We've met some of the most amazing moms and dads who are forging their own path to prevention and recovery. When our son, Evan, was diagnosed with autism we were lucky enough to benefit from their knowledge and experience. Evan has been healed to a great extent by many breakthroughs that, while perhaps not scientifically proven, have definitely helped Evan and many other children who are recovering from autism.

There are some who wonder what we mean when we say "recovering" from autism. They confuse the word recover with cure. While you may not be able to cure an injury caused in a terrible car accident, you can recover; you can regain many skills that you once lost. In the case of autism, we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist. Even though we may no longer see any symptoms of autism, we can't say a child is "cured" because we do not know what they would have been like had they never been injured.

We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."

Evan is now 5 years old and what might surprise a lot of you is that we've never been contacted by a single member of the CDC, the American Academy of Pediatrics, or any other health authority to evaluate and understand how Evan recovered from autism. When Evan meets doctors and neurologists, to this day they tell us he was misdiagnosed -- that he never had autism to begin with. It's as if they are wired to believe that children can't recover from autism. Video Watch CDC chief on vaccines, autism »

So where's the cavalry? Where are all the doctors beating down our door to take a closer look at Evan? We think we know why they haven't arrived. Most of the parents we've met who have recovered their child from autism as we did (and we have met many) blame vaccines for their child's autism.

We think our health authorities don't want to open this can of worms, so they don't even look or listen. While there is strong debate on this topic, many parents of recovered children will tell you they didn't treat their child for autism; they treated them for vaccine injury. Read about latest fight over vaccines and autism

Many people aren't aware that in the 1980s our children received only 10 vaccines by age 5, whereas today they are given 36 immunizations, most of them by age 2. With billions of pharmaceutical dollars, could it be possible that the vaccine program is becoming more of a profit engine then a means of prevention?

We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role. If we are going to solve this problem and finally start to reverse the rate of autism, we need to consider changing the vaccine schedule, reducing the number of shots given and removing certain ingredients that could be toxic to some children.

We take into account that some children have reactions to medicines like penicillin, for example, yet when it comes to vaccines we are operating as if our kids have a universal tolerance for them. We are acting like ONE SIZE FITS ALL. That is, at the very least, a huge improbability.

Even if the CDC is not convinced of a link between vaccines and autism, changing the vaccine schedule should be seriously considered as a precautionary measure. (If you would like to see some ideas for alternative schedules, check out

We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!

The opinions expressed in this commentary are solely those of the writers.

Autistic children linked to same sperm donor

NEW YORK (CNN) -- He's only 5½ years old, and yet he's practically memorized the entire New York subway grid. He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.

Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.

He also happens to be autistic.

Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted one of the largest sperm donor banks in the country.

The sperm bank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.

What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed.

The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.

"It's a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over," according to Dr. Gary Goldstein of the Kennedy Krieger Institute.

Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.

Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there's no way to screen for those genes and prevent them from being passed to a child.

"We wouldn't be able to screen a donor for autism because we don't yet know the specific genes that are contributing to autism," Dawson said. "But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism."

Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.

Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.

"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."

Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."

Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.

Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.

"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.

"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."

Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."

She says Jackaway reassured her that wouldn't be the case.

One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.

"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."

In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.

But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?

"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."

Pergola says she's still uncertain about an autism screening process, if and when it becomes available.

"It can go either way. On the one hand, it could be helpful so that people could make choices about what risks they want to take," Pergola said. "On the other hand, it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."

The families don't blame the sperm bank. Since the discovery of autism in the families that used Donor X, his samples have been removed and are no longer available for reproduction.

Monday, February 11, 2008

Comments regarding previous post...

My name is Michelle Guppy, and I facilitate an online network for parents and professionals in Texas. To join that group to learn more about autism and the educational issues, you can join by going to Special Education in Texas is an issue that is not well defined in a brief article. I welcome any questions about the autism supplement and what it means for students with autism.


Most districts try very hard to do the right thing for Au kiddos and are very high functioning. As for having a " mandate " for social skills we shall see , the emphasis right now and in the near future is for TAKS test taking and it's success at all levels w/wo disabilities. TAKS and the NCLB is already out of control. And that is an unfunded mandate.

The real krux of the matter is that these AU students must pass TAKS to graduate, and if they are not on a state recommmended plan they will have a tough time getting into college, despite their grades. AU kiddos are usually do poorly on standardized tests.

So while an ABA is fine and districts will do it if told to do so.The emphasis will still be TAKS testing and an ABA would only take away from an already rigorous TAKS preperation .

Thus, this article should have been written about NCLB and how it is not leaving children behind but pushing Special Education children into the cracks of an abyss that no one has thought of , or the mess of a generation of Special Education children who have been put into the TAKS accountability meatgrinder.

Good luck to the autistic parents and especially their kids, but they are unaware of what is really going on.


The key is awareness. My own parents were aware of my own rights for my own disabilities.

But we met other parents who hadn't the faintest idea of what they were getting into--instead prefering to leave things to 'the experts'.


It is how some of my former classmates ended up as burger flippers despite being able to go on and successfully perform college level work. They were 'disabled'!

Texas Revamps Strategies for Autistic Students

Hope for autistic students
Grappling with one of special education's fastest-growing areas, legislators make changes that spell out strategies

Parents of Texas' roughly 20,000 autistic students hope that recent changes to state law will resolve one of special education's more contentious areas by clearly spelling out considerations that must be made for their children.

The revamped "autism supplement" defines 11 areas — including specific teaching strategies and social skill supports — that parents and educators must discuss before they decide on an autistic child's education plan.

It replaces an older, very brief list that some advocates say school districts simply skirted over. Education officials, on the other hand, worry that families may view the new guidelines as mandates, rather than considerations.

"Everybody's on a learning curve," said Cynthia Buechler, director of the National Educators Law Institute and a partner at an Austin law firm that specializes in education issues. "My biggest concern is that it'll be construed that there's an entitlement to these services."

Autism, a complex neurobiological disorder, is one of the fastest-growing categories in special education. While it affects children in varying degrees, those on the spectrum often have trouble communicating and socializing.

This is a major area of concern for school districts, which have seen the time and resources that they spend working with autistic children grow exponentially in recent years. Officials in the Cypress-Fairbanks district, for example, say they have about 750 special-education students classified as autistic, compared with five in 1990.

The Houston Independent School District reported 656 students last year with the primary diagnosis of autism. That's up from 557 in 2002-03.

Training for the changes

Under existing state and federal law, school districts are already required to provide any service that a special-education student needs, including all of those that are now specifically mentioned in the supplement.

"We're not really bothered by the autism supplement," said Nadine Fidler, assistant superintendent in the Cy-Fair school district. "A lot of the things, we already do. We're just now committing it to writing "

But advocates said the supplement means school districts have to be more upfront about what the possible services are. Unsure of how these conversations will play out this year, some school districts are scrambling to train educators on the changes.

"Many school districts are grappling with how to address the changes mandated by the new commissioner's rules," said April Fox, director of special education in the La Porte district, which has 72 students affected by the change.

They're worried, for instance, that parents might see "applied behavior analysis" in the supplement and think it means their child is entitled to the popular therapy.

Considered by many parents to be one of the most successful interventions for autistic children, ABA calls for trained educators to spend up to 40 hours a week teaching behaviors by using reward and consequences. It's a costly and somewhat controversial therapy.

"This is going to be a litigated issue," Houston advocate Louis Geigerman said. "Frankly, the districts don't like ABA. While this doesn't mandate that they have to do it, it does mandate that they have to discuss it."

Many of these talks will play out this spring, as parents of special-needs children meet with their school committee for the first time since the changes took effect late last fall.

Districts weren't required to notify parents about the changes ahead of time, and they're also not required to refer to the "autism supplement" at the meeting. They just have to discuss all 11 topics specified in the document.

Because of that, advocates encourage parents to do their homework prior to their child's special-education committee meeting. Such groups, consisting of educators, parents and specialists, meet at least annually to assess a child's progress and set educational goals.

Advocates say they hope this expanded list will guide parents' conversations, letting them know they can ask to attend training workshops or ask that their children receive social-skills support.

"It gives parents a big hammer when they come in," HISD parent Cynthia Singleton said. "But if they don't know where to hit the nail, it's not going to help them."

Policymakers' job

While parents appreciate the items and examples being added to the supplement, many are quick to point out that talk is cheap. Just discussing the items won't resolve any of the long-standing problems that surround educating students with autism, they say.

Legislators and policymakers have a responsibility to make sure schools have enough resources to help students with autism, they said.

"The major hindrance, even if there were 20 provisions, is the ability to implement," said Cy-Fair parent Michelle Guppy, who has a teenage son with autism. "If they don't have the funds, and the teachers don't have the training, it doesn't matter what they say."


Parents and educators must discuss each of the following 11 points before creating an Individualized Education Program for a student with autism:

• Extended educational programming, including extended-day and extended-year services

• Daily schedules with minimal unstructured time

• In-home and community-based training that helps students acquire social and behavioral skills

• Positive behavioral support strategies

• Planning for the life, work and education of children of all ages

• Parent and family training and support

• Suitable student-to-staff ratios for children during the various stages of learning

• Communication interventions

• Social skill supports

• Professional educator and staff support and training

• Teaching strategies based on research-based practices, including discrete-trial training and applied behavior analysis

Monday, January 28, 2008

Autism Changes Everything

My grandson Christian and I used to sit by the side of the road together and talk about the different vehicles as they passed. He loved to name them all—mail truck, delivery truck, garbage truck. Our home videos, now too painful to watch, show a happy little boy reveling in the new role of big brother.

A few months later, this bright, beautiful child was somehow slipping away from us. His words left him, and his playful personality gave way to frequent and intense tantrums. His potty training disappeared. He began to suffer from gastrointestinal problems and recurring infections. The sensation of sand under his feet now made a walk on the beach feel like torture. Autism had its grip on Christian, and it was taking hold of our entire family in the process.

For a while, we mourned the loss of the little boy we knew and all we hoped he would become someday. And then we got back to loving and celebrating the wonderful child he is and how much he has to offer.

My husband Bob [vice chairman of General Electric] and I simply could not fathom why so little was known about a disorder that was devastating thousands of families like ours. Where were the impassioned speeches on the floors of Congress? Why hadn’t anyone told us this could happen to our grandchild—to anyone’s child?

Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.

Our grief evolved into feelings of anger and, eventually, determination. We started a foundation called Autism Speaks and, working with thousands of remarkable parents, have brought this issue front and center. With the help of the United Nations, we are taking this effort global. This year, April 2 will be World Autism Awareness Day.

We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime.

What Do We Know About Autism?

As a child, I learned how autism turns a world upside down. In our house, it was my little brother who was diagnosed at 3. In the search for a treatment, parents will go to any lengths. I saw that with my parents, and I see it now as a practicing physician. Much has changed in the field of autism, but the need for parents to make decisions in a bewildering terrain has hardly changed at all.

A diagnosis of autism usually rests on three distinctive symptoms: difficulty with social interaction, problems with verbal and nonverbal communication, and repetitive actions or obsessive interests. These behaviors can range from mild to disabling.

Parents may first notice that something is wrong when their child fails to babble or point by age 1 or to speak by 16 months. Some autistic children don’t smile or make eye contact. Others seem to be hearing impaired or do not know how to play with toys. There also are cases in which a child who appears to be making normal developmental progress abruptly loses language or social skills.

Is Autism an Epidemic?

Until the 1940s, there was no autism—in the sense that it was an unrecognized condition. In 1988, when Dustin Hoffman’s Rain Man brought a version of autism to life on film, many of us first heard about it—as an odd, almost-fascinating disorder which was also, apparently, rare.

Fast-forward to today. Autism is front-page news. Celebrities talk about it, Congress ponies up millions for research, and the numbers are startling: One in every 150 American kids has some form of autism, says the Centers for Disease Control. The last 15 years in particular have seen diagnoses rates soar. “It is the fastest-growing developmental disability in the U.S.,” says Dr. Andrew Zimmerman, director of medical research at the Kennedy Krieger Institute Center for Autism and Related Disorders in Baltimore.

No one really knows why the numbers are so high. But there are many theories. The most commonly accepted one centers on how we define and recognize autism. “There has been an expansion in the criteria,” explains Dr. Cecelia McCarton, the director of a school for autistic children in New York City, echoing the majority of mainstream experts.

A broader definition means that there are simply more ways to be considered autistic than in the past. At the same time, parents, teachers and doctors are paying more attention to the symptoms—which tends to lead to higher numbers of diagnoses.

But changes in how children are labeled and diagnosed alone “cannot explain the rise,” says Dr. Zimmerman. Other theories rest on maternal, obstetric or environmental factors that perhaps trigger an innate tendency. “Anything from autoimmune disorders to chemicals in the environment may be involved,” adds Zimmerman. He notes that researchers have been pursuing all of these theories to varying degrees, “but science has not yet pointed us to any concrete answers.” An important study released this month suggests that a genetic flaw that occurs around conception may sharply increase the risk that a child will develop autism.

More than perhaps any brain disorder in history, autism has ignited heated arguments among parents and professionals.

What Is the Best Treatment?

There currently is no single definitive treatment for autism. “One size fits all” does not work. But starting early does. These days, children as young as 1 are being evaluated and treated. “The sooner you start, the better off you are,” says Dr. Mc-Carton. Early intervention works, she explains, because of the malleability of the brain in very young children—that is, its ability to grow and develop when stimulated.

Today, most school-based programs rely on behavioral therapy to stimulate development. The treatment aims to reinforce appropriate behaviors while discouraging the inappropriate. Typically, a child is required to perform over and over a task that autism makes difficult—say, buttoning a shirt—with rewards such as stickers or candy for performing the task correctly. This approach, practiced in different variations and sometimes customized to the individual child, helps some autistic children make eye contact, increase spoken vocabulary and master basic life skills.

Lisa Goring of Manhasset, N.Y., got her son Andrew early-intervention services at age 2. “When we started, Andrew threw tantrums that made it impossible for us as a family to go anywhere,” recalls Goring. “At first we felt lost. But after we found a program, he learned how to speak. Once he was able to communicate, his world opened up.” Andrew made such good progress that he was able to enter mainstream kindergarten. He’s now in sixth grade. Though not at the level of his peers, Andrew functions well with one-on-one support provided by his school district.

While behavioral programs claim a scientific basis, the reality is that it is difficult to test their effectiveness or even to compare one type of behavioral treatment with another. Still, these therapies win general endorsement by most professionals and many public school districts (though insurance companies generally refuse to pay for them).

Do Vaccines Cause Autism?

Most doctors and researchers answer a clear “no” to this question. But the controversy remains alive in the media and among parent-advocacy groups.

Parents in these groups have reported a sudden and dramatic social disconnect—including loss of language—in children who previously seemed to be developing normally. The change occurred soon after the children were given the first dose of the MMR vaccine (to prevent against measles, mumps and rubella), typically at around 12-15 months. These parents adamantly believe that their children’s autism was caused by something in the MMR vaccine or in combination with other vaccines containing the mercury-based preservative thimerosal. They insist that the timing of the onset of autistic symptoms is not a coincidence.

While some physicians and scientists support the vaccine-autism link, the overwhelming majority of medical professionals and mainstream medical organizations maintain that vaccines do not cause autism. This is the position of the Institute of Medicine (IOM), National Academy of Sciences, CDC, American Academy of Pediatrics and NIH. After reviewing the research, the IOM concluded that the evidence “did not support an association between autism and the MMR vaccine.”

In fact, even autistic children who never received the MMR vaccine first show symptoms at around the same age as those who are vaccinated.

Is There Hope?

Parents of autistic children should not despair. “Many kids do very well and adapt to their situation,” says Dr. Lee Marcus, clinical director of the pioneering TEACCH program in Chapel Hill, N.C. Since the 1960s, the program—now mandated in North Carolina—has been combining behavioral and developmental therapies, with parents as co-therapists. “There can be progress and optimism about the future. Society is more accepting. Many people do a good job teaching kids with autism.”

Indeed, the road ahead for people with autism depends on the attitudes of the rest of us and our willingness to create opportunities for jobs, for education and for inclusion. “We know our son will always have challenges,” says Lisa Goring, “but we feel very fortunate that we found people who understood how to teach him. He’s different, but his friends absolutely accept him. He has a community.”

Does It Work?

Experts say that nearly 80% of autistic children are given complementary treatments, including special diets and nutritional supplements. “I know of more than 300 treatments being used by families,” says Dr. Paul Law, a pediatrician and father of an autistic child, who created the first national online database on autism. But experts caution that there is little solid scientific evidence for most treatments. Among the most popular:

Elimination diets. These generally allow no casein (found in virtually all dairy products) or gluten (found in most grain-based foods). Many parents report improvements in their children’s functioning. But some professionals say the diets will only work for children who are truly allergic. One warning: Children on restricted diets could end up with nutritional deficiencies. Always talk with your child’s doctor before starting a new regimen.

Secretin. This naturally occurring hormone controls digestion and has been prescribed for gastrointestinal conditions. In 1998, some researchers suggested that a secretin deficiency could cause autism. Hoping for a cure, some parents gave IV infusions of the hormone to their children. But after a series of trials, NIH researchers concluded that there was no evidence that secretin was effective as a treatment for autism.

Chelation therapy. This is an accepted treatment for the removal of toxic levels of lead. Some have argued that autism is caused by a buildup of heavy metals (such as mercury) in the body. No rigorous scientific studies have shown any benefit to chelation therapy. Moreover, it has been associated with serious side effects.

Thursday, January 10, 2008

Genetic mutations boost autism risk, study says

From USA Today -

Scientists have discovered a pair of genetic mutations that markedly boost a child's risk of autism, researchers report Thursday.

The mutations — missing or duplicated snippets of DNA on chromosome 16 — may raise a child's risk of autism 100-fold, the study says. Although the genetic errors occur in just 1% of autism cases, that amounts to a lot of children.

"There are probably a million kids in this country with autism. About 10,000 of them have this mutation," says David Miller of Children's Hospital Boston, where a diagnostic test was developed and is available.

The research marks a major turning point. Scientists no longer are simply describing the many facets of autism but are probing its biological roots.

Previous studies show 90% of cases result from genetic abnormalities, but those found so far explain autism-related disorders in only 10% of patients.

The newly discovered genetic errors occur before fertilization, Miller says, a finding that bolsters the belief that autism-related disorders are genetic or developmental, not caused later in life by childhood vaccinations.

Researchers at the California Department of Public Health on Monday further weakened the vaccine-autism connection. They reported that autism rates in California have continued to climb, from three per 1,000 in 2003 to four per 1,000 in 2007, even though the preservative thimerosal, which has been widely blamed for autism, was banished from almost all vaccines by 2001.

In the new study, researchers for the first time scanned the entire genetic code of 1,441 children with autism or a related disorder and a similar number of parents whose DNA is stored at the Autism Genetic Resource Exchange. They also scanned the DNA of almost 1,000 patients from Children's Hospital Boston and another 18,000 control subjects from Iceland whose DNA was analyzed by the firm DeCode.

Researchers found 13 children who were missing snippets of DNA and 11 who had duplications. In all the cases, the children had autism or related problems, the researchers report in today's New England Journal of Medicine.

"This might be the tip of the iceberg" of dozens of genetic errors, says Andrew Zimmerman of the Kennedy Krieger Institute Center for Autism in Baltimore. Finding more, he says, would enable researchers to create genetic arrays, much like computer chips, that could be used as a one-shot test for many forms of autism.

"If we can identify children at risk for autism very early, we have the chance to intervene early while the brain is still developing," says Annette Estes of the University of Washington's Autism Center Research Program.

Jean Yates of Pound Ridge, N.Y., the mother of two boys with autism, 13 and 17, was elated to hear her family's involvement in the exchange consortium may have made a difference to other families grappling with autism. "I wanted very badly to help," she says. "We gave so much of our blood."



No single behavior is enough to diagnose autism, researchers say, but here are some signs to watch for at age 14 months:

• Lack of gesturing, vocalizing and eye contact to initiate communication.

• An inability to pick up cues from watching facial expressions. If a parent is looking at a stuffed toy, a typical child will follow the parent's gaze to the toy. A child with autism often doesn't do that.

• Unusual play patterns. A typical child given a toy fork will pretend to eat with it. A child with autism may repeatedly tap it on the table or pick it up and drop it.

• Fewer words, gestures and sounds than typically developing children.

Source: Kennedy Krieger Institute


Autism is an umbrella name for a family of disorders that begin in childhood, last a lifetime and disrupt a person's social and communication skills. Here are facts about autism from the advocacy group Autism Speaks:

• 1 in 150 children is diagnosed with autism. Boys are four times more likely than girls to have autism.

• Less than a decade ago, the disease was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2.

• Symptoms range from mild to severe. Many people with autism display rigid routines and repetitive behaviors.

• There is no single treatment for children with autism. Most respond best to structured behavioral programs.