Monday, February 08, 2010

Autism risks detailed in children of older mothers

A woman's chance of having a child with autism increase substantially as she ages, but the risk may be less for older dads than previously suggested, a new study analyzing more than 5 million births found.

"Although fathers' age can contribute risk, the risk is overwhelmed by maternal age," said University of California at Davis researcher Janie Shelton, the study's lead author.

Mothers older than 40 were about 50 percent more likely to have a child with autism than those in their 20s; the risk for fathers older than 40 was 36 percent higher than for men in their 20s.

Even at that, the study suggests the risk of a woman over 40 having an autistic child was still less than 4 in 1,000, one expert noted.

The new research suggests the father's age appears to make the most difference with young mothers. Among children whose mothers were younger than 25, autism was twice as common when fathers were older than 40 than when dads were in their 20s.

The findings contrast with recent research that suggested the father's age played a bigger role than the mother's. Researchers and other autism experts said the new study is more convincing, partly because it's larger. Older mothers are known to face increased risks for having children with genetic disorders, and genes are thought to play a role in autism.

The study was released Monday in the February issue of the journal Autism Research.

Maureen Durkin, a University of Wisconsin researcher who also has studied the influence of parents' age on autism, said it's important to note that the increased risks are small and that most babies born to older mothers do not develop autism.

Durkin said the overall low risk for autism "may be the most important take-home message," especially for prospective parents

The study was based on records of all 5.6 million births in California between Jan. 1, 1990 and Dec. 31, 1999, and on cases of autism diagnosed before age 6. That number totaled more than 13,000; the study involved 12,159 autistic children for whom information on both parents' ages was also available.

The researchers took into account factors that might affect autism diagnosis, including parents' education and race.

Catherine Lord, director of the University of Michigan's Autism and Communication Disorders Center, said the study is stronger than previous research focusing on paternal age, and "gives us a fuller picture of what is going on."

Autism is a developmental disorder that involves mild to severe problems with behavior, communication and socializing.

Recent data suggest about 1 in 100 U.S. children are autistic, a rate that appears to have increased substantially in recent decades. Many experts believe that rise reflects better awareness and a broadening of the definition of autism rather than a true increase in affected children.

Births to older mothers also have risen in recent years, but that likely only accounts for a small part of the increase in cases, said study co-author and UC-Davis researcher Irva Hertz-Picciotto.

Dr. Edwin Cook, an autism researcher with University of Illinois at Chicago, offered a novel theory for why autism is more common among children with older parents: Autism is known to run in families and it may be that adults with mild or undiagnosed autism have children at later ages, Cook said.

The study doesn't include information on autism in adults.


Monday, February 01, 2010

Doc Who Tied Vaccine to Autism Ruled Unethical

In 1998, Andrew Wakefield, a gastroenterologist at London's Royal Free Hospital, published a study in the prestigious medical journal Lancet that linked the triple Measles, Mumps and Rubella (MMR) vaccine with autism and bowel disorders in children. The study - and Wakefield's subsequent public statements that parents should refuse the vaccines - sparked a public health panic that led vaccination rates in Britain to plunge.

Wakefield's study has since been discredited, and the MMR vaccine deemed to be safe. But now medical authorities in the U.K. have also ruled that the manner in which Wakefield carried out his research was unethical. In a ruling on Jan. 28, The General Medical Council, which registers and regulates doctors in the U.K., ruled that Wakefield acted "dishonestly and irresponsibly" during his research and with "callous disregard" for the children involved in his study. (See the year in health 2009.)

After the finding, Wakefield, who now heads an autism research center in Austin, Texas, described the decision as "unfounded and unjust." He added that he had "no regrets" over his work.

The General Medical Council, which will now decide whether to revoke Wakefield's medical license, highlighted several areas where Wakefield acted against the interest of the children involved in the 1998 study. It criticized Wakefield for carrying out invasive tests, such as colonoscopies and spinal taps, without due regard for how the children involved might be affected. It also cited Wakefield's method of gathering blood samples - he paid children at his son's birthday party $8 to give blood - and said that Wakefield displayed a "callous disregard for the distress and pain the children might suffer."

The panel also criticized Wakefield for failing to disclose that, while carrying out the research, he was being paid by lawyers acting for parents who believed their children had been harmed by the MMR jab.

The panel's ruling follows a refutation of Wakefield's research from the scientific community. Ten of 13 authors in the Lancet study have since renounced the study's conclusions. The Lancet has said it should not have published the study in the first place, and various other studies have failed to corroborate Wakefield's hypothesis. (Watch a video on the story of an uninsured woman.)

Despite this, the effects of the media frenzy surrounding Wakefield's research - a study found that MMR was the most written about science topic in the U.K. in 2002 - continue to be felt in Britain. Vaccination rates among toddlers plummeted from over 90% in the mid-1990s to below 70% in some places by 2003. Following this drop, Britain saw an increase in measles cases at a time when the disease had been all but eradicated in many developed countries. In 1998, there were just 56 cases of the disease in England and Wales; by 2008 there were 1,370.

Despite assurances from various health bodies that Wakefield's study was seriously flawed, he still has a dedicated following among parents concerned about a rise in autism rates in the U.K. and U.S. - the cause of which has so far baffled health experts. Wakefield is now the Executive Director of the Thoughtful House autism center in Texas, which the Times of London recently claimed receives millions of dollars in donations each year. At the ruling in London, Wakefield was flanked by a small group of supporters, some of whom shouted in protest as the ruling was read out. Speaking after the hearing, Wakefield remained unbowed, and addressed his supporters directly: "It remains finally for me to thank parents whose loyalty has been extraordinary, and I want to reassure them that the science will continue in earnest."


Tuesday, January 12, 2010

Ongoing Evolution May Explain Mysterious Rise in Diseases

While natural selection is best known for weeding out the weak, it may also be partly responsible for the apparent rise of some disorders, such as autism, autoimmune diseases and reproductive cancers, according to researchers.

Since evolutionary factors play a role in disease, the two fields should have some crossover, say a group of scientists who have studied various aspects of the link between evolution and medicine.

"This work points out linkages within the plethora of new information in human genetics and the implications for human biology and public health, and also illustrates how one could teach these perspectives in medical and premedical curricula," said researcher Peter Ellison, an anthropologist at Harvard University.

The results, they say, could save lives.

"Evolutionary medicine got going in the '80s and early '90s, but it has been energized in the last decade by the discovery that it really makes a difference," researcher Stephen Stearns of Yale University told LiveScience. "In the last 10 years we have found out that taking an evolutionary perspective really helps to reduce suffering and to reduce the risk of death."

Evolution and disease

Stearns and a long list of scientists presented their findings on this evolution-medicine link at the Arthur M. Sackler Colloquium in the spring of 2009. The results, announced publicly today, are now published in the journal Proceedings of the National Academy of Sciences.

For example, previous work in evolutionary medicine has helped to explain some reasons why disease is so prevalent and difficult to prevent: Natural selection favors reproduction over health; biology evolves more slowly than culture; and pathogens evolve more quickly than humans.

They describe these and other connections between evolution and sickness along with possible explanations. Here are the highlights:

  • Humans evolved alongside beneficial bacteria and parasitic worms, and so our ancestors built up immunity to such bugs. But nowadays with increased hygiene, we've eliminated the bacteria and worms. The result: Since our immune systems aren't used to these good bugs, our bodies fight them as foreigners. That can result in allergies, asthma and autoimmune diseases, such as Graves' disease in which a person has an overactive thyroid.
  • Humans have higher rates of cancer than other species. One reason: We aren't adapted to the new risk factors of modern society, including tobacco, alcohol, a high-fat diet and contraceptives, researchers have found.
  • Certain adaptations that once benefited us might be helping several ailments to persist in spite of, or perhaps because of, advancements in modern culture and medicine, according to researchers.

With respect to evolution and culture, here's a case in point: Harmful mutations are often recessive, and so both parents must pass on the gene in order for the disease to show up in offspring. And while natural selection has supported outbreeding (breeding with people other than close relatives), culture hasn't always followed suit. Across the globe, about 10 percent of spouses are second cousins or closer, the researchers say, with the prevalence ranging from 1 percent to 50 percent in different cultures.

The inbreeding can cause recessive genes that should only have a small effect on mortality to have a much larger impact.

Autism and evolution

Autism and schizophrenia also have ties with evolutionary science. Essentially, they boil down to a battle of the sexes.

Past studies beginning in the 1960s have built on one another to suggest mom and dad are in evolutionary conflict over investment of resources to their offspring. A mother knows all of her babies are hers and so should give evenly to all. But fathers only want to invest in their biological kids (not offspring from another male) and so a father's genes will pressure mom to skew investment toward those offspring.

Studies in genetically engineered mice have shown that when certain paternal genes get expressed, the baby mice are 10 percent heavier than normal.

The results should translate to humans and carry into early childhood, affecting children's behaviors, the researchers suggest.

For instance, when the paternal form of a gene on chromosome 15 gets expressed, and not the mother's, the resulting offspring will be more demanding, sleep poorly, want to suckle frequently and have a 40 percent to 80 percent chance of having autism as an adult. (Humans normally have 46 chromosomes in each cell.) While scientists think genes play a role in developing autism, the complex causes of this disease are still unknown.

Similar findings have shown psychoses such as schizophrenia can develop when the maternal form of certain genes gets expressed.

Educating physicians on evolution

Stearns suggests evolutionary perspectives should be integrated into curricula as early as undergraduate school for students planning to attend medical school. The knowledge, Stearns said, would complement traditional studies undertaken in medical school.

We're trying to design ways to educate physicians who will have a broader perspective and not think of the human body as a perfectly designed machine," Ellison said. "Our biology is the result of many evolutionary trade-offs, and understanding these histories and conflicts can really help the physician understand why we get sick and what we might do to stay healthy."

The take-home message: "Evolution and medicine really do have things to say to each other, and some of these insights actually reduce suffering and save lives," Stearns said.


Thursday, November 05, 2009

Asperger's term may be dropped as a form of autism

It is one of the most intriguing labels in psychiatry. Children with Asperger's syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that astonishes adults and bores their playmates to tears.

This once obscure diagnosis is increasingly common. Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger's and other mild forms of the disorder.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it officially joined the medical lexicon only in 1994, the experts who are revising psychiatry's diagnostic manual propose to eliminate it from the new edition, due in 2012.

A single diagnosis

If they have their way, Asperger's syndrome and another mild form of autism — pervasive developmental disorder not otherwise specified — will be folded into a single diagnosis, autism spectrum disorder.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the University of Michigan's Autism and Communication Disorders Centers, a member of a group evaluating neurodevelopmental disorders for the manual.

Taking Asperger's out of the manual, known as DSM-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don't want to say that no one can ever use this word,” Lord said. “It's just not a diagnostic term.”

But the change, if approved by the manual's editors, is likely to be controversial. The Asperger's diagnosis is used by insurers, state agencies and schools, not to mention people with the disorder.



Friday, October 16, 2009

Sean's Walk Now for Autism 2009 Donation Page


Sean at the 2008 Walk

Saturday, October 24, my family and I will be participating in a very
special event, WALK NOW For Autism benefiting the Autism Speaks
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 Autism Speaks 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 10-year-old son, Sean, was diagnosed with a form of Autism, Asperger's
Syndrome, seven 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 $1,125.00!

I know times are tough and some of my biggest contributors are no longer
my co-workers due to layoffs, etc. Please give what ever you feel comfortable with.

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

Sean's 2009 Autism Speaks Walk Now 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 Autism

Please feel free to forward this e-mail on.

Marc's Autism - Asperger's Syndrome Blog


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 91 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' 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 is 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

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

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.


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


Monday, October 05, 2009

Op-Ed: Fight to overcome autism gets major boost, higher priority

By Health and Human Services Secretary Kathleen Sebelius

Washington, DC — Last Wednesday, President Obama visited the National Institutes of Health (NIH) to announce the single biggest investment in biomedical research in American history. Among the $5 billion in grants he announced are new explorations of longtime research targets from cancer to heart disease. But the grants also include the largest-ever investment in an Obama administration priority that has so far gone mostly unnoticed: autism research.

President Obama has made autism a focus from the first days of his presidency. Less than a week after he was sworn in, my department’s Interagency Autism Coordinating Committee released its first-ever strategic plan for government autism research. And President Obama has backed this plan by adding $1 billion to his budget for autism over the next eight years. Altogether, the federal government will provide nearly twice as much funding for autism research in the upcoming fiscal year as we had just three years ago.

We needed a new focus and new resources because autism has emerged as an urgent public health challenge. As recently as the 1990s, scientists thought autism was a rare disorder that affected 1 in every 2000 kids. Earlier this decade, we revised that estimate to say that 1 in every 150 kids was somewhere on the autism spectrum. Our most recent data suggest that autism may be even more common than that. Almost every American I talk to about this issue knows at least one family that is affected by autism.

Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now.

As Secretary of Health and Human Services, I oversee many of the agencies that are participating in this effort. At the NIH, new research funds are being used to address every aspect of autism from testing innovative treatments to exploring the unique needs of the growing number of adults with autism to searching for the genes underlying the disorder.

At the Health Resources and Services Administration, they’re helping train health professionals to recognize autism early when we know treatments can be more effective. They’ve also created two national autism research networks that will allow researchers to gather data from different sites in order to identify the most promising treatments for autism. These networks will also create channels for these best practices to flow back to parents and providers around the country, so that Americans can have the latest evidence on which treatments work and which don’t.

The Center for Medicare & Medicaid Services is working with states to provide targeted case management that helps kids with autism get the support they need at home and at school. And for the first time ever, they’re supporting medical home models that can help children with autism get the kind of coordinated, family-centered care that helps them thrive.

President Obama is also taking steps to make sure health insurance reform will address the needs of families with autism. Under the plan he has proposed, private insurance companies would no longer be able to deny you coverage just because you or someone in your family has a condition like autism. And in order to participate in new health insurance exchanges, insurance companies will have to agree to offer mental health services that help families with autism on par with other benefits.

Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism. We still have more questions than answers. But with additional funding and a new coordinated national strategy, we are working harder and more closely together to find those answers than ever before.

Kathleen Sebelius is the Secretary of Health and Human Services in President Barack Obama's Cabinet. She was the Democratic governor of the state of Kansas from 2003 to 2009.

For the First Time, a Census of Autistic Adults

Among the many great mysteries of autism is this: Where are all the adults with the disorder? In California, for instance, about 80% of people identified as having an autism spectrum disorder (ASD) are 18 or under. Studies by the Centers for Disease Control and Protection (CDC) indicate that about 1 in 150 children in the U.S. have autism, but despite the fact that autism is by definition a lifelong condition, the agency doesn't have any numbers for adults. Neither has anyone else. Until now.

On Sept. 22, England's National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum - the same rate found for children in England, Japan, Canada and, for that matter, New Jersey.

This finding would also appear to contradict the commonplace idea that autism rates have exploded in the two decades. Researchers found no significant differences in autism prevalence among people they surveyed in their 20s, 30s, 40s, right up through their 70s. "This suggests that the factors that lead to developing autism appear to be constant," said Dr. Terry Brugha, professor of psychiatry at the University of Leicester and lead author of the study. "I think what our survey suggests doesn't go with the idea that the prevalence is rising."

In England, where there is widespread suspicion that the childhood vaccine for measles, mumps and rubella has led to an explosion in autism cases, the study was hailed as part of a growing body of evidence that the vaccine, which was introduced in the 1988, is not to blame.

Brugha's study was part of a larger national survey of psychiatric disorders among adults. In the first phase, researchers conducted 90-minute interviews with 7,461 people in 4,000 randomly selected British households; the interview included a 20-item questionnaire designed to screen for autism. (Sample yes-or-no questionnaire items: I find it easy to make friends. I would rather go to a party than the library. I particularly enjoy reading fiction.) Based on their answers in the first phase, investigators further assessed 618 individuals, using a battery of psychiatric measures, including a state-of-the art autism diagnostic tool. (About 200 of these participants had been selected for scoring high on the autism screen; the rest had been selected to sample for other disorders.) In the second phase, researchers identified 19 adults with ASD. But had they been able to evaluate all 7,461 in the survey, they estimate that they would have found 72 cases, or roughly 1% of the total.

One limitation of the study is its relatively small size, says Brugha. Being the first of its kind, it also needs to be confirmed by other studies. Another issue, notes Richard Roy Grinker, an autism researcher and professor of anthropology at George Washington University, who was not involved in the work, is that the study looked only at adults in the general population. Had it included people living in institutions, which is where the most severely autistic adults are likely to be, the estimated rate of ASD may have been even higher than 1%.

Michael Rosanoff, an epidemiology specialist with Autism Speaks, emphasizes that "the small sample size for estimating prevalence requires caution about interpreting this finding on a population-based scale."

Despite its limits, the new study does begin to fill in the profile of high-functioning adults who are on the spectrum but living in an ordinary home in the community. Researchers found that they are primarily male and unmarried: about 1.8% of men surveyed were on the spectrum - among never-married, single men, an estimated 4.5% had ASD - compared with just 0.2% of women. (Brugha notes, however, that autism screening tools may be poorly adapted for identifying autism in adult females.) People with autism are less likely than average to have finished college but about as likely to be employed. Only 0.2% of adults who had finished college were on the spectrum, but the rate was 10 times higher among those without a high school degree. And, in contrast with people with depression or anxiety disorders, autistic adults were unlikely be receiving any sort of mental health services.

Why has it taken so long to do a study of this sort? For one thing, you need an enormous sample size - at an enormous cost - to find significant numbers of people with autism. Second, it's more difficult to detect autism in adults than in children. Children often have glaring symptoms, like delays in learning to speak, extreme social withdrawal and terrible tantrums. Less is known about how autism looks in adults. "To diagnose autism, you need to have good information on people's behavior," says Brugha. "It's much more straightforward to get that with children because you've got parents and teachers as observers. Adults with autism are not the best people to describe their own behavior."

The Irish-born psychiatrist and epidemiologist says he sees a lot of adults with ASD in his own clinical practice, and "they have so much difficulty saying what their own difficulties are." He suspects that this lack of insight and inability to communicate emotional issues also reduces their ability to seek professional help.

Efforts to identify and help adults with ASD have lagged far behind efforts to help children. And yet, Brugha notes that just having an ASD diagnosis to explain their troubles can be enormously beneficial to his adult patients, who often struggle with relationships at home and at work because of difficulty reading social cues. "Once you help them to understand that they are not the only person on the planet who is like this, and help their families understand, it can be a breakthrough. People also have a better chance of staying in their work, if their employer understands why they are the way they are." Moreover, Brugha says it is not expensive to provide services to adults with relatively mild autism. "The cost of treating a child with autism is phenomenally high. We are not talking about this. We are talking about support, helping people adapt their lives" with help from a social worker.

Grinker, who has a teenage daughter with autism, finds the study to be in some ways comforting. "I would think that a study like this would encourage people that children with autism could grow up and have futures that are meaningful and that they are not going to end up in institutions."

View this article on

Tuesday, September 22, 2009

Wednesday, September 16, 2009

Can autism really be detected by voice alone?

The Lena Foundation, whose new autism-screening tool hit the market in September, claims that parents who use the Lena System are now able to determine with 91 percent accuracy whether their child is developing normally, has autism, or has unassociated language delays.

The home kit, which includes a digital audio recorder, an outfit to hold the recorder, and a questionnaire about the child's development thus far, costs $699. The foundation, which develops technology for the screening of several types of language delays and disorders, says the kit works for children as young as 24 months.

"Roughly speaking, autistic children vocalize differently from other children," Dongxin Xu, manager of software and language engineering at the Lena Foundation, tells MIT's Technology Review.

Analyzing a child's vocal patterns to screen for autism isn't new. The three factors that seem to set the Lena System apart from traditional screening methods are portability (the recording device is small); amount of data (16-hour recordings); and the software Lena uses to analyze the recordings parents mail in dutifully each month.

According to Jeffrey Richards, a statistician and database technician for the Lena Foundation, the software first categorizes the 16-hour audio stream into sound types, such as child, parent, or television. The child clips are then further dissected, and analyzed for the phonological composition of each sound, as well as how it is clustered and paired. The resulting data is then compared with the data compiled on children who are considered normal, autistic, or delayed.

The 91 percent accuracy is high, and while Lena researchers continue to fine-tune their software to push that rate even higher, I remain somewhat skeptical that voice alone can determine whether a child is autistic. It is often suggested that Einstein didn't speak until he was at least 3, if not 4 or 5; I have to wonder how a 16-hour recording of Einstein at 24 months would be interpreted by Lena software.


Tuesday, September 08, 2009

Stimulus money beefs up special ed programs

Federal stimulus money is helping to give a voice to students like 7-year-old Peter Bernay.

The Clear Creek school district is spending part of its $6.7 million in special education stimulus money to buy voice-output devices, which allow Bernay and other students to better participate in class. The device speaks messages typed by the first-grader, whose speech has been delayed by Down syndrome.

“He loves it. His friends love it,” said his mother, Anne Bernay. “It's going to really help them to understand him and understand what he was going to say. He's a really smart little kiddo, and he has so many ideas in his head he just can't get out.”

School districts have until 5 p.m. today to apply for part of the $945.6 million, Texas' share of $12 billion in federal stimulus money set aside for school-age children served under the Individuals with Disabilities Act. This part of the stimulus plan infuses much-needed money into one of the costliest and most strained areas of education, parents and educators said.
Will it be used wisely?

Some are skeptical, though, about whether the dollars will trickle down to students with special needs.

“I hope the football program appreciates it,” quipped Houston resident Michelle Guppy, who has a son with autism. “I don't think it will be spent as it's intended. I think it will go toward things and not education. I'd like to see receipts of the teacher trainings it's paid for, the raises for the special education teachers it has provided for.”

Nearly 470,000 students — about 10 percent of Texas' public school population — receive special education services.

“This is an unprecedented opportunity for special education, and we hope the outcome is improved results for students with disabilities,” said Kathy Clayton, senior director of the division of IDEA coordination for the Texas Education Agency.

Every district is eligible for a share, the size of which depends on population and poverty levels. Some cash-strapped districts admit they are using part of the money to avoid cutting existing special education services.

North Forest ISD, for example, will spend part of its $1.8 million to maintain positions.

“Stimulus money will be used to save and add jobs to the special education staff,” said spokeswoman Anitra Brown, adding that money will also be spent to train teachers, purchase materials and buy technology.

Humble ISD officials spent the summer planning how to spend the district's $6.2 million.

“The major push is to improve academics,” spokeswoman Karen Collier said.

In addition to buying technology, Clear Creek is creating 32 new positions, including eight elementary school teachers and two autism specialists. They're hopeful the school district will be able to absorb the costs when the federal money dries up in two years.

“I wish we had more funding, but that's OK. We covered everything we truly really needed,” assistant superintendent Irene Fellows said.
HISD's approach

Others, such as the Houston Independent School District, were reluctant to use the money to create recurring annual expenses like salaries. Each HISD campus will decide how to spend its own allocation, with the district's larger high schools receiving in the neighborhood of $200,000, officials said.

Most of the district's $42.4 million will be spent on training and instructional programs.

“Since this is one-time funding we wanted to get the biggest bang for our buck,” said Carolyn Guess, assistant superintendent of special education.

Part of HISD's money will be spent to hire an employee that will help special needs students transition into the work force. The specialist will work with major companies to place graduates in higher-level jobs.

Another person will be hired to help place preschoolers with special needs into mainstream daycare programs. Math and reading specialists will also be hired, Guess said.

Houston ISD is prepared to account for every federal dollar, Guess added.

“We want to do very, very well with it,” she said. “We want to do what's right for children.”

By JENNIFER RADCLIFFE Copyright 2009 Houston Chronicle

Sept. 7, 2009, 9:08PM

Sunday, August 02, 2009

Saturday, August 01, 2009



Adam is a handsome but intriguing young man who has all his life led a sheltered existence -- until he meets his new neighbor, Beth, a beautiful, cosmopolitan young woman who pulls him into the outside world, with funny, touching and entirely unexpected results. Their implausible and enigmatic relationship reveals just how far two people from different realities can stretch in search of an extraordinary connection.

A user's review on IMDB -
You won't find traditional romantic comedies at Sundance. But quirky romantic comedies were in this year. And how much quirkier can you get than Adam, where the male lead (Hugh Dancy) has Asperger's Syndrome (like a mild, high-functional form of autism) and the female lead (Rose Byrne) is a hot and seemingly normal babe? And that's the movie—Adam is very nice but extremely weird, socially awkward, prone to erratic behavior and a societal misfit, and Beth is everything you'd want in a woman.

(This should provide a ray of hope for all the geeky guys fantasizing about a beautiful, charming and good-hearted woman falling in love with them one day. I can hear it now: "If Beth can fall for Adam, then why not me? After all, he has Asperger's and all I've got is this little hygiene problem, plus my two-room Star Wars collection.")

The movie opens with the death of Adam's father. We follow him to work, where he is writing microchip software for toys and fixated on creating interesting functionality while his boss simply wants to cut costs. He stays in the apartment he had shared with his dad, eating the same meals every day, sitting in the same chair, and following his established routines until Rose moves into the building. Adam falls in love, in his obsessive way. Rose is attracted to Adam, but naturally wary. And things proceed from there, as they work out their relationship while enduring painfully awkward physical contacts and even more pain and awkwardness meeting the friends and parents, and ultimately … well, you've got to see the film. But for my money, the ending was the best part.

Adam is a cute, mildly entertaining movie, with laughs and smiles despite a less than polished script. Both Dancy and Byrne give fine performances, and veteran actors Peter Gallagher and Amy Irving are quite good as Beth's parents. Written and directed by Max Mayer, it was picked up at Sundance by Fox Searchlight and will likely be released in 2009.

Official site

Monday, July 06, 2009

Marine with autism remains in brig

Mother" 'I just want him out of the Marine Corps'

By TONY PERRY Los Angeles Times

July 6, 2009, 1:04PM

SAN DIEGO -- A few days after he arrived at boot camp here, Joshua Fry no longer wanted to be a Marine.

He was confused by the orders drill instructors shouted at him. He was caught stealing peanut butter from the chow hall. He urinated in his canteen. He talked back to the drill instructors. He refused to shave.

Finally, he set out toward the main gate as if to head home. He was blocked, but now he had the chance to tell his superiors a secret: He was autistic. Fry figured this admission would persuade the Marines to let him return to the group home in Orange County for disturbed young adults where he lived when he enlisted.

Instead, he was sent back to Platoon 1021, Company B. The drill instructors became more helpful, and in April 2008 he finished the grueling 11-week regimen and was sent to Camp Pendleton for infantry training.

Within weeks he was under arrest for desertion and possession of child pornography.

Documents in Fry's court-martial detail a troubled upbringing and a Marine career that was both improbable and misbegotten from the start.

But far from being a routine instance of a young man unable to adjust to military life, the Fry case has exposed an awkward issue for the Marines and other military services: Recruiters sometimes take ethical shortcuts to make their quotas at a time when Americans have tired of the nation's wars and finding recruits is difficult.

According to court documents, Fry's recruiter knew he was autistic. The Marine Corps is investigating the recruiter's conduct.

Compared to the large number of enlistees each year, the number of allegations against recruiters is small and the number substantiated even smaller. But a report by the U.S. State Department, prompted by concerns in Congress, concluded that even a small number of misconduct cases "fosters distrust of the military (and) such distrust makes recruiting for all even more difficult."

The Marine Corps has the highest percentage of substantiated misconduct claims. In the last three fiscal years, 265 Marine recruiters have been relieved of duty for misconduct, most commonly for hiding negative background factors.

Autism is not among the conditions that automatically bar a would-be recruit. But, if Navy doctors had known of the diagnosis, Fry would have been evaluated more skeptically during the pre-boot camp medical examination and probably would have been rejected.

In 2006, a psychiatrist for the Orange County mental health agency wrote that, although Fry "is high functioning for a child with autism, he exhibits the typical characteristics of anxiety, impulsive behavior, distractibility, very poor social skills and an inability to read social cues and interact appropriately in social situations."

Fry, now 21, has spent a year in the brig at Camp Pendleton. His next court-martial hearing is July 27.

He also faces a third charge added later: fraudulent enlistment. The charge is based on Fry not telling his recruiter he had received counseling for an addiction to child pornography. Under military rules, he is not allowed to talk to the media.

His grandmother, Mary Beth Fry, who also lives in Orange County, said Fry is not doing well.

"He's had a lot of problems being locked up," she said. "He's on psychotropic drugs. He's been diagnosed as bipolar and is having trouble holding it together."

When he was 18, his grandmother went to court to become Fry's legal conservator. Under the conservatorship, Fry is prohibited from signing contracts without his grandmother's approval.

Mary Beth Fry said she told the recruiter that her grandson needed her approval to enlist, but that he ignored her.

A 35-page motion filed by Fry's lawyer details a troubled childhood: parents who were drug addicts, an evaluation of autism at 8, multiple stays in foster homes, behavior problems at Newport Harbor High School, an arrest for stealing iPods and a court-ordered stay at a facility for psychologically disturbed youth that lasted 15 months.

Mary Beth Fry said she was unaware that the recruiter contacted her grandson while he was living in the group home. "A lot of things went on that I didn't know about when he was (there)," she said. He enlisted in January 2008.

Fry's lawyer, Michael Studenka, sought to have the charges dismissed and Fry discharged on the grounds that he should not have been allowed to enlist because he cannot legally sign contracts. A Marine judge rejected that motion.

Studenka declined to discuss the case.

But Kevin McDermott, an Orange County lawyer who is familiar with Fry's case and has represented military clients who felt misled by their recruiters, said that potential enlistees who would have been rejected a few years ago are now allowed to enlist, as recruiters struggle to fill their quotas.

"These recruiters are under enormous pressure," he said.

According to the Pentagon, there were 2,426 claims of recruiter misconduct in fiscal 2007, when 22,218 recruiters brought 319,229 recruits into the all-volunteer services. Of the claims, 593 were substantiated.

The Marine Corps, with 43,562 recruits and 2,783 recruiters, had 211 claims of recruiter misconduct, with 118 substantiated. The Marines were the only service where more than half of claims were substantiated.

The Marines declined to discuss the Fry case, but, in a statement, said, "We want only those who are qualified: morally, mentally and physically. Any recruiter who circumvents our layers of screening to place an unqualified applicant into our ranks only does detriment to the qualify of our force."

Mary Beth Fry said she hopes a plea bargain can be worked out that will bring him home soon.

"I just want him out of the Marine Corps so we can get him the care he needs," she said.

Wednesday, May 20, 2009

A Genetic Clue to Why Autism Affects Boys More

Among the many mysteries that befuddle autism researchers: why the disorder affects boys four times more often than girls. But in new findings reported online today by the journal Molecular Psychiatry, researchers say they have found a genetic clue that may help explain the disparity.

The newly discovered autism-risk gene, identified by authors as CACNA1G, is more common in boys than in girls (why that's so is still not clear), and the authors suggest it plays a role in boys' increased risk of the developmental disorder. CACNA1G, which sits on chromosome 17, amid other genes that have been previously linked to autism, is responsible for regulating the flow of calcium into and out of cells. Nerve cells in the brain rely on calcium to become activated, and research suggests that imbalances in the mineral can result in the overstimulation of neural connections and create developmental problems, such as autism and even epilepsy, which is also a common feature of autism. (See six tips for traveling with an autistic child.)

"Our current theories about autism suggest that the disorder is related to overexcitability at nerve endings," says Geri Dawson, chief science officer of Autism Speaks, an advocacy group that provided the genetic data used by the study's authors. "It's interesting to see that the gene they identified appears to modulate excitability of neurons."

For the new study, researchers at the University of California, Los Angeles (UCLA), combed the genetic database of the Autism Genetic Resource Exchange (AGRE), a resource of DNA from 2,000 families with at least one autistic child. The scientists focused on the more than 1,000 genetic samples of families in which at least one son was affected by the disorder, prompted by the results of an earlier study using the same database, which identified a rich autism-related genetic region on chromosome 17 that contained genetic variants more common in boys than in girls. While nearly 40% of the general population has the most common form of CACNA1G, one variant of the gene was more prevalent in autistic boys, researchers found. "There is a strong genetic signal in this region," says Dr. Daniel Geschwind, director of UCLA's Center for Autism Research and Treatment and one of the study's co-authors. "But this gene doesn't explain all of that signal or even half of it. What that means is that there are many more genes in this region contributing to autism." (See pictures of inside a school for autistic children.)

That's not surprising for a disorder as complex as autism - actually, a spectrum of developmental disorders involving impairment in language, social behavior and certain physical behaviors - with symptoms that range widely in number and severity. So far, studies have linked a handful of genes, all of which play a role in the way nerve cells connect and communicate, with autism spectrum disorders. It's likely not only that a large number of genes contribute to the disorder, but also that a different combination of genes - as well as unique interactions between genes and environment - are responsible for each individual case of autism.

So it's certainly a daunting challenge to begin teasing out the individual genes that may contribute to autism, as the UCLA team has with CACNA1G, but databases like AGRE make the job slightly easier. The next step will be to try to use known autism genes to help develop screening tools or early interventions. "We are going to have a much better understanding of the causes of autism over the next five to 10 years," says Dawson. "We're in a period of great discovery."


Friday, May 08, 2009

Research suggests children can recover from autism

CHICAGO – Leo Lytel was diagnosed with autism as a toddler. But by age 9 he had overcome the disorder. His progress is part of a growing body of research that suggests at least 10 percent of children with autism can "recover" from it — most of them after undergoing years of intensive behavioral therapy.

Skeptics question the phenomenon, but University of Connecticut psychology professor Deborah Fein is among those convinced it's real.

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic.

Among them was Leo, a boy in Washington, D.C., who once made no eye contact, who echoed words said to him and often spun around in circles — all classic autism symptoms. Now he is an articulate, social third-grader. His mother, Jayne Lytel, says his teachers call Leo a leader.

The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

"We're at a very early stage in terms of understanding" the phenomenon, Dawson said.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy — often carefully designed educational and social activities with rewards — most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Doubters say "either they really weren't autistic to begin with ... or they're still socially odd and obsessive, but they don't exactly meet criteria" for autism, she said.

Fein said the children in her study "really were" autistic and now they're "really not."

University of Michigan autism expert Catherine Lord said she also has seen autistic patients who recover. Most had parents who spent long hours working with them on behavior improvement.

But, Lord added, "I don't think we can predict who this will happen for." And she does not think it's possible to make it happen.

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

Because the phenomenon is so rare, Fein is still seeking children to help bolster evidence on what traits formerly autistic kids may have in common. Her team is also comparing these children with autistic and non-autistic kids.

So far, the "recovered" kids "are turning out very normal" on neuropsychological exams and verbal and nonverbal tests, she said.

The researchers are also doing imaging tests to see if the recovered kids' brains look more like those of autistic or nonautistic children. Autistic children's brains tend to be slightly larger than normal.

Imaging scans also are being done to examine brain function in formerly autistic kids. Researchers want to know if their "normal" behavior is a result of "normal" brain activity, or if their brains process information in a non-typical way to compensate for any deficits.

Results from those tests are still being analyzed.

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

Significant improvement suggesting recovery was evident by around age 7 in most cases, Fein said.

None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected.

Jayne Lytel says Leo sometimes still gets upset easily but is much more flexible than before.

Sunday, April 05, 2009

How 1 Autistic Young Man Runs a Business

Joe Steffy is off to Overland Park, Kan., this week to do a PowerPoint presentation on his business, Poppin' Joe's Kettle Korn. He's a 23-year-old small-business man with a goal of $100,000 in sales by 2012. Joe also has autism and Down syndrome and is nonverbal. When he gives his talk, he will push buttons on an augmentative speech device to deliver the words. His audience will be parents who fervently hope their own special-needs children will be able to work, too.

Joe's parents, Ray and Janet, didn't agree with the school district assessment in their home town of Louisburg, Kan., that said Joe would never be able to work or live independently. "I'm one who can easily get ticked off," says Ray. "That ticked me off. We saw more in Joe than that. We set out to prove to the school that he had capabilities." They came across kettle corn while on a trip to Alaska and realized that all that popping, scooping, and serving suited Joe's love of work.

The path to Joe Steffy's success was not an easy one; Ray Steffy worked closely with Dave Hammis, an advocate for self-employment for people with disabilities in Middletown, Ohio, who trains business owners, government employees, and parents on how to make use of state and federal programs. The Steffys wrote up a business plan and helped Joe secure $25,000 in grants from programs like Social Security Administration's Plan to Achieve Self-Support program (PASS).

In 2005, Poppin' Joe's Kettle Korn was born. Sales have grown from $16,000 in 2005 to $50,000 in 2008, both from selling at festivals and from delivering popcorn to local outlets. Joe has five part-time employees, and his parents help out with driving and other tasks. "Pop and everyone that works with him knows whatever Joe wants to do you let him do, because he's the boss," Ray says. "If he wants to pop, he'll shove Dad out of the way and pop."

If the business stays on track, it should be grossing more than $100,000 in three years, and the Steffys are seeking a business partner who can work with Joe to manage the business. Joe is no longer on Social Security disability payments; instead, he pays state sales tax and state and federal income tax. He rents his own house and is helped by caregivers who are paid by a state program.

"It's been hard work, from the standpoint of physical work," says Ray Steffy, who is 67. "But a parent with a child like Joe has a choice. You can either kick in and do this kind of thing, or you can sit and fret emotionally with the amount of energy, worrying about what's going to happen to them."

The payoff for that effort, as far as the Steffys are concerned, has been priceless. They see their son make a local popcorn delivery, accept payment, fold it, and put it in his pocket. When he walks out, his dad says, Joe looks 3 inches taller than when he walked in.


Tuesday, March 24, 2009

Thai fireman in 'spider-man' rescue of autistic boy

BANGKOK (AFP) – A Thai fireman turned superhero when he dressed up as comic-book character Spider-Man to coax a frightened eight-year-old from a balcony, police said Tuesday.

Teachers at a special needs school in Bangkok alerted authorities on Monday when an autistic pupil, scared of attending his first day at school, sat out on the third-floor ledge and refused to come inside, a police sergeant told AFP.

Despite teachers' efforts to beckon the boy inside, he refused to budge until his mother mentioned her son's love of superheroes, prompting fireman Sonchai Yoosabai to take a novel approach to the problem.

The rescuer dashed back to his fire station and made a quick change into a Spider-Man costume before returning to the boy, he said.

"I told him Spider-Man is here to rescue you, no monsters are going to attack you and I told him to walk slowly towards me as running could be dangerous," Somchai told local television.

The young boy immediately stood up and walked into his rescuer's arms, police said.

Somchai said he keeps the Spider-Man costume and an outfit of Japanese television character Ultraman at the station in order to liven up school fire drills.

Tuesday, February 10, 2009

Aspie Mom

Raising an autism spectrum child with humor, humility and hope

The definition of Asperger's Syndrome

Meet Aspie Mom, the newest member of MomHouston's blog role. She is the single-mom to a five-year-old son with Asperger's Syndrome—an "Aspie" she calls him.

This former editor-in-chief of the Texas Family Magazine says she started the blog "to share the ups and downs of parenting an 'Aspie' with others going through the same thing."

According to the Mayo Clinic, children with Asperger's Syndrome have a developmental disorder that affects their ability to socialize and communicate with others. It is generally thought of as being a "milder" form of Autism. Some of the signs and symptoms of Asperger's include:

• Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
• Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
• Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes
• Appearing not to understand, empathize with or be sensitive to others' feelings
• Having a hard time "reading" other people or understanding humor
• Speaking in a voice that is monotonous, rigid or unusually fast
• Moving clumsily, with poor coordination
• Having an odd posture or a rigid gait

As I have found from reading through Aspie Mom's blog, Asperger's is more than just a list of symptoms. It is ice cream soup and peeled grapes, unexpected trips to Holland and a kid who can make any mom laugh.

Houston Chronicle

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.