Take note, parents of children with autism: FDA says supplement is a drug

The "dietary supplement" sold as OSR#1 is actually a toxic drug, with potentially serious side effects, the Food and Drug Administration has warned.

The product was the subject of a story published in the Times Health section a few months ago: Industrial chemical OSR#1 used as autism treatment

Here's the latest article, on the warning letter from the agency: FDA warns maker of product used as alternative autism treatment

The story quotes Ellen Silbergeld, an environmental health expert at Johns Hopkins University, as saying: "An industrial chemical known to be toxic — his own incomplete testing indicates it is toxic. It has no record of any therapeutic aspect of it, and it is being marketed for use in children."

-- Tami Dennis

Photo credit: Chicago Tribune

Big study identifies new genes that may be involved in autism

A large international consortium of authors (including some at UCLA) have identified new genes that appear to be involved in autism somehow. The findings appear in the journal Nature.

The researchers in this big effort examined the DNA of 996 children with autism spectrum disorder plus their parents, and compared what they found with the DNA of 1,287 matched controls (who didn't have autism but were of similar ancestry, etc). They looked for differences between the two groups in places in the genome where chunks of DNA are repeated or deleted. 

Such repeats or deletions were found 20% more often in the autism group -- some of them situated at genes that, therefore, may be involved in the condition. The implicated genes appear to be involved in functions such as nerve connections and nerve growth, and others had been implicated in learning disabilities.

In some cases, the parents also had these little duplications or deletions, implying inheritance. In other cases, the kids had them but the parents did not, implying, perhaps, that they had developed in sperm or eggs that gave rise to the children.

That genes are involved in autism is not a surprise: The condition is known to run in families, and twin studies indicate inheritance. And previous studies have identified some genes. But this was the biggest autism-DNA study yet, and it adds to the list of genes that could be involved in autism.

The study doesn't produce any kind of diagnostic test, since the genes identified don't definitively predict autism, but just indicate heightened risk (some of the researchers are now working on a project to see whether the genes can help in diagnosis of new cases of autism). And they also don't explain more than a fraction of autism cases.   

Here's the Nature paper.

You can also read several news releases explaining the study in simpler terms -- for example, one from UCLA and one from Oxford University.

Here's a fact sheet about the global Autism Genome Project.

And here's a write-up at Scientific American.

--Rosie Mestel

Free autism book giveaway

 Fifty thousand free copies of the book "Autism Tomorrow: The Complete Guide to Help Your Child Thrive in the Real World" are available on a first-come-first-served basis at its website. 

The book, offered by Autism Today and the Center for AAC and Autism, is a manual aimed a helping parents and kids navigate the road to adulthood.

Some of the blurb from the website:

"Now that many of our little children with autism are reaching adulthood, questions arise like…'What do we do now?' 'Where do we go from here?' 'Where will my child live?' 'Will they get married and have children?' 'How will they get along in the real world if I’m not around?' This book provides both a road map and a fill-in portfolio to help you make intelligent decisions, regarding the direction and intentions you have for your child’s life."

The book features chapters on issues such as community, safety, employment and independent living. Written by Karen Simmons and Bill Davis, both parents of children with autism, it contains insights and advice from 16 autism experts, including some (like Temple Grandin, an animal scientist with autism, and Stephen Shore, a professor with Asperger's syndrome) who know well of what they speak from their own life experiences.  

This would seem to be a really useful resource, whether or not you win a freebie.

--Rosie Mestel

Graphic Credit: Susan Beidel

Divorce rates no higher among parents of children with autism, study finds

Having a child with autism can strain even the strongest marriage, but parents of autistic children may be no more likely to divorce than other parents, according to a new study. The study, presented this week at the International Meeting for Autism Research in Philadelphia, debunks a belief held by some that the divorce rate is higher -- as great as 80% -- among parents with autistic children. Researchers from the Kennedy Krieger Institute in Baltimore looked at data on 77,911 children age 3 to 17 who were part of the National Survey of Children's Health.

They found that 64% of children with an autism spectrum disorder were part of a family with two married biological or adoptive parents, compared with 65.2% of children who did not have autism. After controlling for children who had a co-diagnosis of a psychiatric disorder, children with autism had a slightly greater chance than children without autism of living with two married parents.

This isn't to say that having an autistic child doesn't cause stress in a marriage. "While there are indeed stressors in parenting a child with autism, it doesn't necessarily result in the family breaking up more often than would occur in another family," said Brian Freedman, lead author of the study, in a new release. Freedman, clinical director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute, added, "I would hope this research drives home the importance of providing support to these families, and letting them know that their relationships can survive these stressors. We should continue to provide training for parents so that they can work through the stressors in their relationship to keep their family together and have a successful marriage."

-- Jeannine Stein

Photo credit: Los Angeles Times

Special diet did not help children with autism, study finds

Some parents report that dietary changes can help improve the behavior, sleep and bowel patterns of children with autism. That relationship is extraordinarily hard to prove, however, requiring a study with strict control of a child's diet and intense observation of symptoms over a period of time. Not surprisingly, few strong studies examining diet and autism have been carried out. The few that have been done have yielded mixed results.

A study released Wednesday provides some evidence that dietary changes that involve eliminating gluten and/or casein from the diets of children with autism are not effective. The study was small -- only 14 children -- but it was the most rigorously conducted trial on the association so far.

Researchers at the University of Rochester Medical Center tested 14 children with autism who did not have celiac disease or diagnosed food allergies. The children were placed on strictly controlled gluten- and casein-free diets (called GFCF diet). After at least four weeks the children were randomized to receive either milk, wheat, both or neither. The food substances were disguised in the child's favorite foods, and neither the parents nor investigators rating the children's behaviors knew whether they were receiving gluten or casein.

The study found no changes in the children's behavioral symptoms, sleep time, night walking, activity, or bowel habits and symptoms.

While carefully conducted, the study is so small that investigators can't rule out that some children might benefit from special diets, however.

"It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn't show significant benefits," the lead author of the study, Dr. Susan Hyman, said in a news release. "However, the study didn't include children with significant gastrointestinal disease. It's possible those children and other specific groups might see a benefit."

The study was presented Wednesday at the International Meeting for Autism Research in Philadelphia.

-- Shari Roan

Photo credit: Beatrice De Gea / Los Angeles Times

Doctors want you to remember polio and diphtheria

Too many American children do not receive recommended childhood vaccines for illnesses such as polio, measles, mumps, diphtheria and pertussis that were once thought to have been eradicated but are making a comeback in some areas. According to data from 2008, almost one-quarter of children ages 19 months to 35 months did not receive the recommended vaccinations.
 
On Tuesday, the American Academy of Pediatrics -- perhaps frustrated with the stubborn anti-vaccine tide in the United States -- unveiled a new public health campaign called Protect Tomorrow that "brings to life the memories of the terrible diseases of the past and reminds parents that, unless they are vaccinated, infants and children are at risk for contracting infectious diseases that can lead to hospitalization, disability and even death," according to a statement from the organization.
 
Some children don't receive vaccines because they don't have regular access to healthcare. Others have ample access to care but have parents who are afraid of the potential side effects of some vaccines or believe vaccines cause autism. The autism link has been disproved. It's true that vaccines may carry side effects, although side effects are severe in a very small number of children. However, if trends continue and more children go unvaccinated, we may have a return of severe communicable diseases that will harm many more children than would be imperiled by the vaccines. Young parents today are simply not familiar with the horrors of the iron lung or the tragic infant deaths from pertussis that were all too common more than a half-century ago.
 
It may be a fear tactic, but the AAP is right to warn that history may repeat itself. Vaccination is for the good of everyone. It's time parents consider logically the public health value of vaccination -- one of the great advances of 20th century medicine -- weighed against the tiny chance of adverse side effects occurring in their child.
 
Information on the campaign and National Infant Immunization Week, April 24-May 1, is available at www.ProtectTomorrow.org

-- Shari Roan

Photo: A girl receives a polio vaccination in 1954. Credit: Joe Heiberger /  Washington Post

How and when autism symptoms appear dictate illness severity

Among the most baffling observations about autism is that some children appear to have symptoms early in life while others develop normally and then regress prior to age 3. Still others have mild developmental delays and then experience a plateau in development.

Evidence suggests these are different types of autism, and new research supports that idea. Researchers at Kennedy Krieger Institute in Baltimore found in a new study that children with early symptoms may actually be at lower risk for poorer outcomes than children who develop normally and then experience a loss of skills.

In data collected from 2,720 parents, researchers found children with regression had a distinct increase in the severity of symptoms, such as not attaining conversational speech. The outlook was even worse for children whose parents also said the regression phase was severe.

"Children with developmental plateau are an especially under-researched group, and these findings have important implications for those designing and prioritizing clinical evaluations," a co-author of the study, Dr. Paul Law, said in a news release.

More than one-third of the parents surveyed said they had concerns about their child's general development before they noticed the more obvious signs of regression.

The study is published online in the Journal of Autism and Developmental Disorders.

-- Shari Roan

Many autism memoirs, books and advice -- now one for all

Parents of autistic children can be impressively connected to each other even while feeling painfully alone. Now there's a book that makes the most of their willingness to engage the wider world, even as it, perhaps, ameliorates their feelings of loneliness.

In what's called the Open Text Project, the University of Michigan Press is temporarily offering free access to "The Accidental Teacher," a mother's book about life with a severely autistic child. And here's the key: The online presentation solicits comments -- paragraph by paragraph -- should readers desire to respond, discuss, share, give feedback...

The foreword, written by Catherine Lord, director of the Autism and Communication Disorders Center at the University of Michigan, offers this overview:

"Many observations in the book will be familiar to parents and professionals who work with individuals with ASD: the need to consider (though not necessarily try) any possible treatment, even those that seem far-fetched; the daily concerns with sleeping and eating and disruptive behaviors; the difficult trade-offs in building a life for an entire family and responding to the extraordinary needs of a child with a disability. Yet, in the end, this is a unique story about a boy who loved long, quiet walks; rolling on frozen ground; and banging cobs of corn; a boy who enthusiastically perused books with photographs and had a Houdini-like ability to disappear."

The writer herself, Annie Lubliner Lehmann, says in the introduction:

"Parts of this book, the challenges, bureaucracies, humor and bittersweet moments, will be familiar to those who know autism intimately. Yet I have learned that despite meeting similar designated criteria, each story, like each person with autism, is unique.

I am no autism expert, just a mother and soldier, one of many in an army of parents. There are many insights to share. My report comes from the front lines. Here is our story."

Here's more about the book. And a previous essay by the author, on her breast biopsy,  published in the Los Angeles Times.

And here's the full book. Comments are more than welcome -- they're encouraged.

-- Tami Dennis

Credit: Richard Hartog / Los Angeles Times

 

A new genetic test for autism is a big improvement but still has a long way to go

For a reality check on how much scientists know about the genetics of autism, consider a study being published in Monday’s edition of the journal Pediatrics.

The study reports that a kind of genetic testing method known as a chromosomal microarray analysis – CMA for short – is about three times better at finding genetic variants related to autism-spectrum disorders than the two kinds of tests currently used.

Researchers from Children’s Hospital Boston and their colleagues ran the tests on DNA samples from 933 patients age 13 months to 22 years. All were diagnosed with autism-spectrum disorders. Here’s how the tests stacked up:

• A karyotyping test, which analyzes the size, shape and number of chromosomes, found “abnormal results” in 2.23% of patients.
• A test for Fragile X syndrome, a genetic condition known to cause autistic behavior, found abnormal results in 0.46% of patients.
• The CMA test, which looked for telltale duplications and deletions of DNA, found abnormal results in 7.3% of patients.

Clearly, the CMA test was most effective, and the study’s authors say the test should be offered to patients as a first-line test.

“CMA clearly detects more abnormalities than other genetic tests that have been the standard of care for many years,” said study coauthor Dr. David Miller, of the hospital’s Division of Genetics and its Department of Laboratory Medicine, in a statement. “We’re hoping this evidence will convince insurance companies to cover this testing universally.”

However, for the overwhelming majority of patients who take it, the test won’t turn up anything suspicious. That’s not necessarily surprising, considering that only about 15% of autism cases have a known genetic cause. But it certainly underscores the limitation of all of these types of tests, said Andy Shih, vice president for scientific affairs for Autism Speaks, which funds research on the disease.

“The utility of this test in actual clinical settings is not clear,” Shih said. “Until we know more about the association between some of these variants and actual autism risk, it’s difficult to see how this could benefit the family now.”

-- Karen Kaplan

Photo: Genetic testing still has a long way to go to benefit families of patients with autism. Credit: Richard Hartog / Los Angeles Times

Autism vaccine ruling sparks a lot of comment

Today's decision by a federal court that the preservative thimerosal does not cause autism has sparked a lot of comment in the autism community, most of it negative. Many saw it as a government conspiracy to protect the vaccine industry, a claim that has also been made about the swine flu vaccination program.

Some examples:

The Coalition for Vaccine Safety argued that the special masters "appear to have based their decisions on the government policy to protect the vaccine program rather than to fulfill their role to do justice by vaccine-injured children.... The special masters appear to be following a misguided government policy that if they acknowledge a mercury-autism link, parents will stop vaccinating their children."

Said Laura Bono, the parent of a "vaccine-injured child" whose case was dismissed: "The government has its thumb on the scales of justice.... The law only gives the illusion that parents will have their day in court. The process is dysfunctional and many families will not see justice done."

The ruling may make parents even more distrustful of the vaccine program because the  Department of Health and Human Services was both a defendant in the cases and the main source of crucial information about vaccine safety, said Lyn Redwood of SafeMinds. "There's an inherent conflict of interest."

But Alison Singer, president of the Autism Science Foundation, disagrees. "The science here is very clear. There is no evidence that vaccines cause autism.... The studies are very clear, and the vast majority of families have come to the same conclusion. There is just a small, vocal minority of parents who just don't want to believe what the data show."

Added Roy Richard Grinker, author of "Unstrange Minds: Remapping the World of Autism" and the father of an autistic child: "This decision reaffirms my faith in the experts' ability to understand reality. As a parent, I am tired of all the discussions about autism being controlled by a discourse on vaccines.... The time and money being spent on something of no significance is disheartening to me as a parent."

The reaction to the decision was complicated by a red herring thrown into the mix Friday when it was revealed that a researcher at a Danish university who had been involved in the studies that debunked the autism-vaccines link was suspected of defrauding the government of nearly $2 million in grant money.

Dr. Paul Thorsen was the subject of a probe by Aarhus University, which said it had detected a significant shortfall in funds from a grant from the Centers for Disease Control and Prevention for the studies.  Advocates of a vaccine-autism link immediately seized on the announcement as an indicator that the whole research program was corrupt -- just as global warming denialists have seized on the e-mails released in the so-called Climategate to argue that global warming research is corrupt.

In both cases, of course, the charges are nonsense. Thorsen may be a crook, but there were lots of other scientists involved in the research, and their integrity is not being contested.

"We have no reason to suspect that there are any issues related to the integrity of the science," said Tom Skinner, a spokesman for the Centers for Disease Control and Prevention, which funded the studies.

Finally, we'd like to share with you an e-mail from reader Erin Roberts of Camarillo: "More than 15 years ago, a family friend had a son diagnosed with autism. They had suspected vaccines being the cause. Because of this, I opted to not vaccinate my children until they were older. Now I have two sons, Xavier, 13, and Raven, 10, both diagnosed with autism and neither of them vaccinated until after they received their diagnosis.... I have known for years that vaccines do not cause autism."

-- Thomas H. Maugh II

-- Andrew Zajac

-- Trine Tsouderos