Tomorrow, a few hundred very concerned citizens of Minnesota will gather to discuss a baffling and heartbreaking riddle: Why is the reported rate of autism among children of Somali refugees so alarmingly high (now an estimated 1-in-28 schoolchildren)?
When I first heard about this phenomenon, which Somalis call the "Minnesota Disease," my reporter's instinct told me it could be a very big story; that a key piece of the puzzle that is autism might well lie within the bloodstreams of these poor children of the Twin Cities - whose families had already suffered through so much.
If it can be demonstrated that US-born children of Somali refugees are more prone to autism than the other kids of Minneapolis - or Somalia - then it shouldn't take too long to discover what it is about them (their genes) that clashed so terribly with the way they were conceived and raised (their environment).
It won't explain every case of autism, of course, but it might open new doors of understanding and knowledge that can be applied to combating autism worldwide.
The daylong conference on Saturday is a tribute to progressive public health and a responsive local government (plans include Somali translators, Somali food, breaks to allow time for Islamic prayer, and child care). The meeting is sponsored by a variety of Somali, autism and other community groups, as well as several State and City agencies, including the Minnesota Departments of Health,
"The Somali community expressed a need for information on autism, and our duty is to respond to that, to provide as much information as possible, and in a culturally context," said state health department spokesman Doug Schultz. "The concern in the community is real, and if they have the perception that there is a high rate, then we need to talk about that."
But is there really a "high rate?" A written survey I conducted with some 25 refugee parents of autistic children certainly revealed their strong belief that there is - and nearly all of them blame the vaccine program of their adoptive country.
In August, the online newspaper MinnPost first reported that 12 percent of kindergarten and pre-school children with autism in Minneapolis speak Somali at home, and more than 17 percent of the kids in the early childhood autism program are Somali speaking.
The Minneapolis Star tribune published other staggering figures: Among Somali students in the district, 3.6 percent had autism - a rate of 360-per-10,000, (or 1 in 28). The paper said this was about twice as high as the already burgeoning district average of some 180-per-100,000 kids (or 1 in 56), and more than five times the national rate of 66-per-10,000 (1 in 150).
Virtually all of the children of Somali refugees were born in the United States, and they appear to be among the most severely affected children with autism in the district: Last year, one-in-four children in the preschool class for the most severe cases was Somali.
Reports of elevated autism rates among children of immigrants is nothing new. A small study this year showed that Swedish-born children of Somali immigrants to that country were far more likely to have autism than the general population, (Somalis there call autism the "Swedish Disease"), and another small study in 1995 found an autism rate of 15% among children in one Swedish town born to mothers from Uganda - 200 times more than the national average.
Higher than normal autism rates among children of immigrants have also been reported in Ireland, the UK and several cities in North America, especially Montreal.
Meanwhile, none of the refugees that I surveyed had ever heard of autism back in Somalia, where there isn't even a name for the disorder. In fact, no one had ever seen nor heard of a single child who displayed any of the common symptoms of autism -- though a few did report knowing kids with speech delay that eventually resolved itself.
Not everyone is convinced that there is a problem, however.
"These reports are interesting and need further review, but you don't just take something off the news as facts," cautioned Judy Punyko, an epidemiologist for the state department of health. "We need to obtain the actual data and analyze it, so I am not sure there is much of a story here at this point."
Punyko has assembled a team of experts to determine if the Somali autism rates are in fact higher than average in Minneapolis, and she was expected to release at least preliminary results at Saturday's meeting.
But on November 12, Dr. Punyko sent me an email saying she is not able to present any results yet, "only study aim, objectives, and progress to date. I am still in the process of gathering existing data and this is taking a lot more time than I had anticipated," she wrote. "These data are tough to work with."
The delay will not be welcome news to any of the Somali parents I spoke with. They know that, without proof that their children are being afflicted more than others, officials will not intervene to investigate.
One mother (who asked not to be identified due to the tremendous stigma of autism among Somalis), first approached state and city officials in April of 2007, beseeching them to look into the apparent problem. It wasn't until local reporters started snooping around, the mother said, that government stepped up to respond.
The parent refugee-activists even secured a teleconference meeting with health staffers in the DC office of Minnesota Senator Norm Coleman. They told the Somalis that, if the prevalence was shown to be higher in their community, they would urge the CDC and other Federal agencies to "look under every rock" to find out why - including environmental factors like mercury, thimerosal and vaccines.
Many Somali parents began to suspect vaccines as a possible cause on their own, and well before they encountered any American media or autism groups who could put the idea in their head.
In fact, one of the most obvious "environmental" differences between Minnesota and Somalia is mass vaccination (another is sunlight, but more on that later).
There are an estimated 15,000-40,000 Somalis living in Minnesota, which has the largest Somali population outside of East Africa. Most fled during or after the 1993 phase of the bloody Civil War in that country. Most spent years in often wretched refugee camps in Kenya and elsewhere, waiting for a chance to emigrate to Europe and North America.
Many got their chance in 2000, when the majority of Somalis arrived in Minneapolis, hoping to finally build a new life in peace and dignity.
Along the way, vaccines became an almost routine part of their life: They were given in the camps, they were given before leaving Africa, and they were given in the first year of arrival in the US (which requires a series of 10 vaccinations for all refugees, including women of child bearing age - many of those vaccines contain thimerosal).
Once they arrived in Minnesota, most refugees were welcomed by a progressive "Blue" state with a good public health infrastructure and a bureaucracy ready and willing to help. Refugees were given about a year or so of free medical and dental care, and special effort was made to ensure full compliance with the childhood vaccine schedule (though many mothers failed to keep well-baby visits, requiring lots of "catch up" vaccinations when they did bring their children in to the pediatrician).
Of the 25 refugee mothers who answered the questionnaire, most were vaccinated in refugee camps, and all but two were fully vaccinated after arriving in the US. About a third reported receiving vaccines while pregnant or shortly before becoming pregnant.
When asked what they thought was causing autism in their community, 22 respondents said that vaccines were at least partly to blame, while two were unsure, and only one said vaccines were uninvolved.
Many parents told me the same story of regression I have heard a thousand times before.
"He met all the normal milestones until he hit 18 months," lamented Abdulkadir Khalif, speaking of his three-year-old son with autism. "He was a beautiful baby, running around, saying a few words, until about the winter of 2006, right when he got his MMR (measles-mumps-rubella) shot. He got sick and we went to the hospital, and he stopped talking immediately around that time."
"Do I know it was the vaccines?" Khalif asks. "All I know is he stopped talking right around the time of those shots."
Neither Khalif nor his wife (who was given a thimerosal-containing flu shot while pregnant, even though the label instructed the doctor to administer the shot during pregnancy, "only when medically necessary"), had ever heard of autism until the day their son was diagnosed.
Khalif says, it is "not possible" that autism could be this common in Somalia. "I've been living with it on a daily basis, with my own child. And I lived in Somalia and Kenya for a long time. If it was this common, we would have had a name for it, and we don't. That tells me it does not exist."
"And these symptoms? I had never seen anything like it before. We have names for mental retardation or Down syndrome. But the mannerisms, the loss of speech, the tantrums and violence and running out of the house that comes with autism - I think we would have noticed those things. But we've never seen them before in Somalia or Kenya."
Hodan Hassan, mother to four children including four-year-old Jenny, who has autism, said she had been "a little lax and lazy" with vaccinating her first two kids, "and the doctors got mad at me." With Jenny, she vowed to get all shots on time (and dutifully got the flu shot while pregnant). But there seemed to be a problem with the record keeping, because Jenny was clearly over-vaccinated (for example, she received five Hepatitis B shots, when only three are required).
Soon after giving birth, Hassan started work at a hospital, where she received several mercury containing vaccines, even while breast feeding Jenny.
Jenny had several terrible, feverish reactions to some of her vaccines, twice requiring visits to the ER, where she was given IV fluids and Tylenol.
On Valentines Day, 2006, Hassan brought Jenny in for her 18-month well baby visit, right on time. "she was saying 'mommy' and 'daddy' and 'juice' and 'go, go let's go!'" Hassan recalls. "She was a very happy and attentive baby. She would look at you when talked to her, she would come when you called.
Then Jenny got five vaccines at once (M-M-R, Prevnar and chicken pox) at the doctor visit. She spiked a fever and returned to the hospital. "She never spoke again," Hassan said. "It was all gone right after those shots. I know the doctors don't believe it. They think we must be crazy. But these are our kids, and we were there when everything happened to them. The doctors were not."
Many of the parents I spoke with said they plan to stand up and speak out at the meeting, where Khalif and Hassan are both scheduled panel members.
"I have gathered information on 149 Somali families in Minneapolis with autistic children, and I plan on asking the experts why it is so much," Hassan said.
But she doesn't expect a ready answer. "I think they will try to cover it up at the meeting, avoid the issue, and say 'It is not what you guys think, you can trust us, this is not what it is,'" she said. "But that is not acceptable. Word of mouth went out and people are panicking, and they don't know who to trust. One American doctor told me he will not vaccinate any of his own kids, but has to vaccinate all the others. You have no idea what kind of message that sends to our community."
Khalif also plans on posing tough questions.
"I am going to make all those education and health officials feel very guilty," he said. "Where did this come from? This is a disease that's been acquired by our kids here. In each and in every case, all the children, with one exception, that have been identified with autism were born in this country. I want them to tell me directly that the vaccines are safe. I want someone to stand up and say that. And then, I want to ask that same person two years down road the same thing, and see what the percentages are like."
Khalif also wants to propose "a rescheduling of the vaccines for our Somali children, because I think there is something in our immune system that cannot handle that number of vaccines at one time. The rate is so high, that something will be found in our genes or systems. Science now has a window to find out the actual cause, and therefore the remedy, for autism."
Some doctors and researchers in Minneapolis that I spoke with were extraordinarily sympathetic toward the Somalis. "Vaccines have to be playing a role," said one very prominent pediatrician and researcher, who is working quietly behind the scenes to change attitudes at the University of Minnesota and elsewhere, and did not want to be named.
"Maybe if we start talking about the individual toxins in vaccines, and not the vaccine program as a whole, others in the medical profession will find it easier to come around," the doctor said.
Another local doctor, who did speak on the record, was willing to speculate on one possible variable that might make Somali kids more prone to autistic regression - with or without vaccines: Vitamin D deficiency.
Dr. Gregory A. Plotnikoff, medical director for the Institute for Health and Healing at Abbott Northwestern Hospital, said a colleague had noticed an "exceedingly high" rate of morning sickness among pregnant Somali women in Minneapolis, often requiring hospitalizations.
The doctor began checking Vitamin D levels and found that, on average, they were far below what is considered to be normal and healthy.
Somalis, he said, may start out with naturally low abilities to produce vitamin D from sunlight, (as is the case with many people with Middle Eastern blood in them). That is compounded by the fact that dark-skinned people require far more sunlight to produce vitamin D than light-skinned people and, when Somalis move to areas of higher latitude, with far less sunlight - their vitamin D stores may be virtually depleted, at least for part of the year.
"Vitamin D is crucial for normal brain development, because there are receptors for it throughout the brain," Plotnikoff said. "Vitamin D also plays a role as an anti-inflammatory agent and, besides cutting down on inflammation, it increases concentrations of glutathione, which better supports the brain's capacity to handle heavy metals and oxidative stress."
Glutathione has been found to be low or depleted in many children with autism. A lack of glutathione would make children more vulnerable to the effects of mercury and other heavy metals.
"Another problem is that Tylenol depletes glutathione, and regretfully, most kids who get a shot also get Tylenol," Plotnikoff said. "It's routinely given without considering that it can increase the risk of heavy metals, like mercury, causing oxidative injury in the brain."
"Glutathione has antioxidant properties, and it also chelates, or removes heavy metals in the body. We want a lot of it around. We need it, and we depend upon it," he added.
So, could there be a possible connection between vitamin D deficiency, glutathione depletion, heavy metal accumulation and autism?
"It's a hypothesis that absolutely needs to be tested," Plotnikoff said. "Vitamin D deficiency is crucial to study, because of its many roles in normal brain development -- including the capacity to handle oxidative stress and handle heavy metal loads. The data we have now can't say if this s the case, but it is a compelling hypothesis that deserves national attention."
"My sense is that autism is likely to be a result of a combination of many important factors," he continued. "The gift that the Somali community is giving us is about a significant awareness of the role of low vitamin D levels and other environmental issues, including immunizations and heavy metals, in autism. Severe Vitamin D deficiency could be what is behind all this. And that is what the Somali community did for us: They get no sun in Minnesota, and they have extremely low levels of vitamin D."
Finally, vitamin D deficiency in pregnant animals can lead "dramatic" defects in mitochondrial function in offspring, according to at least one study. The role of mitochondrial dysfunction and autistic regression is only now beginning to be explored. But some researchers believe that poor mitochondrial health (perhaps exacerbated by vitamin D deficiency?) is a precursor to autistic regression in at least one subgroup of children.
All of this, of course, is speculation. There is no proof that any Somali autism cases were caused by vitamin deficiency, lack of sunlight, mercury or vaccines. But if you look for major differences between life in Somalia and life in Minnesota, you will find that one has lots of sunlight and very few vaccines -- and the other has less sunlight, but lots of vaccines.
Is it possible that vitamin D deficiency caused glutathione depletion and mitochondrial damage to these Somali children, setting them up for regression into autism after receiving multiple simultaneous vaccines containing heavy metals (as was the case in the famous Hannah Poling Vaccine Court claim)?
No one knows. And sadly, some refugees are not waiting around for US doctors to find out.
"Some autism families have returned to Somalia," said one mother, who did not want to be identified. "They were angry and disgusted with the United States. The nation that offered them refuge was the same nation that made their children so sick," she said.
"They think that, by returning home, maybe they can make their children better."
Friday, November 14, 2008
UIC joins international research effort to study autism
UIC joins international research effort to study autism
Researchers at the University of Illinois at Chicago are taking part in an international effort to gather DNA samples from 2,000 autism patients and their families over the next three years.
The initiative, called the Simons Simplex Collection, is the first coordinated effort to create a database of information about families with only one autistic child.
"This collection of DNA will allow researchers at UIC and at other centers to identify genetic factors that increase the risk of autism and to potentially develop interventional therapies and new drugs for the treatment of autism spectrum disorders," said Dr. Edwin Cook, professor of psychiatry, director of the UIC Autism Center of Excellence, and principal investigator of the study.
Autism is an often devastating and lifelong disorder that appears during the first three years of life. Children and adults with autism often have difficulty communicating and forming relationships. The variation of behaviors and level of functioning among people with autism differ greatly.
The national Centers for Disease Control and Prevention estimates that about one of every 150 eight-year-old children is diagnosed with some form of autism spectrum disorder. Autism spectrum disorders occur in all populations and socioeconomic groups and are four times more likely to occur in boys than in girls.
Families eligible to participate in the study include those with only one child with an autism spectrum disorder, age four or older; one or more siblings without an autism spectrum disorder, age four or older; and unaffected biological parents who are willing to participate.
Eligible children with an autism spectrum disorder will receive a behavioral assessment and all family members will donate blood, a source of DNA. A small number of families with no siblings or siblings under the age of four may be eligible to participate in the study.
DNA gathered through the Simons Simplex Collection will be stored at a central repository.
Data gathered from the research will aid scientists from around the world who are searching for the causes of autism.
In addition to UIC, the Simons study is being conducted at Baylor University, Columbia University, Emory University, Harvard University, McGill University in Montreal, the University of California, Los Angeles, the University of Michigan, the University of Missouri, the University of Washington, Vanderbilt University, Washington University, and Yale University.
Researchers at the University of Illinois at Chicago are taking part in an international effort to gather DNA samples from 2,000 autism patients and their families over the next three years.
The initiative, called the Simons Simplex Collection, is the first coordinated effort to create a database of information about families with only one autistic child.
"This collection of DNA will allow researchers at UIC and at other centers to identify genetic factors that increase the risk of autism and to potentially develop interventional therapies and new drugs for the treatment of autism spectrum disorders," said Dr. Edwin Cook, professor of psychiatry, director of the UIC Autism Center of Excellence, and principal investigator of the study.
Autism is an often devastating and lifelong disorder that appears during the first three years of life. Children and adults with autism often have difficulty communicating and forming relationships. The variation of behaviors and level of functioning among people with autism differ greatly.
The national Centers for Disease Control and Prevention estimates that about one of every 150 eight-year-old children is diagnosed with some form of autism spectrum disorder. Autism spectrum disorders occur in all populations and socioeconomic groups and are four times more likely to occur in boys than in girls.
Families eligible to participate in the study include those with only one child with an autism spectrum disorder, age four or older; one or more siblings without an autism spectrum disorder, age four or older; and unaffected biological parents who are willing to participate.
Eligible children with an autism spectrum disorder will receive a behavioral assessment and all family members will donate blood, a source of DNA. A small number of families with no siblings or siblings under the age of four may be eligible to participate in the study.
DNA gathered through the Simons Simplex Collection will be stored at a central repository.
Data gathered from the research will aid scientists from around the world who are searching for the causes of autism.
In addition to UIC, the Simons study is being conducted at Baylor University, Columbia University, Emory University, Harvard University, McGill University in Montreal, the University of California, Los Angeles, the University of Michigan, the University of Missouri, the University of Washington, Vanderbilt University, Washington University, and Yale University.
Monday, August 25, 2008
Obama Would Let Her Die
It was a bright summer day in Chicago when a woman confirmed that she was pregnant with her first child. The telling of the families ensued, followed by the announcement to friends. The days began to speed up, her body began to change, and eventually the pressing question was finally asked. To know or not to know the gender of the baby, what would they choose?
Eventually they decided to go for the ultrasound and prepare themselves for her arrival.
Only what they discovered was not what they had expected.
With the conclusion of the ultrasound pending, the technician left the room with a worried look on her face. A few minutes later, a senior doctor entered and relayed the sad news.
The ultrasound showed an echo-genic condition. This particular cause for concern was due to the lungs of the unborn child showing up brighter on the ultrasound reading than the medical doctors felt they "should be" at that point in the pregnancy. Bright lungs on the ultrasound, they were informed, indicated a high probability of Down's syndrome. Understanding the repulsion that disabled children were in a state that Barack Obama served in, the conclusion was clear: this child must be aborted. So with all the grace of a semi-truck hitting a brick wall at top speed, the doctor flatly informed the baby's mother that in the state of Illinois, there were only a limited number of days to have an "induced labor procedure" (abortion). They strongly suggested that the mother and father consider and pursue this "solution" to the "Down's question."
The parents chose instead to pursue additional and frequent ultrasounds roughly every two weeks for a period of time to see if there were any further developments.
You see, in Barack Obama's twisted world, not to mention that of the medical and abortion industries in his home state, the push was on--test for Down's, and do an "induced labor procedure" (abortion). Additionally, in this messed up universe, Obama specifically and single handedly saw to it that if the child had struggled with the chemical process of the "induced labor procedure" (abortion) and survived, she would not have been allowed any medical care to save her life.
But that is the way of the world for Barack Obama, the medical practitioners that terminate pregnancies, and the hospital named "Christ" that performs these procedures. Oh and did I mention that it is Obama's own religious denomination that operates said hospital?
But I can't help but ask the question: "Why does Obama pursue such outcomes?"
Perhaps it's because neither of his children have had anything but a beautiful life, and a pleasurable home to experience. But do handicapped children deserve less from life because of some mental or physical limitation? The Paralympics are just around the corner. Does Obama believe we would have been a more just society if those athletes had each been aborted, or left to die in a soiled utility closet even if born?
Last week, Barack Obama called those of us who have told the truth about his position on this issue "liars." He said that we were misrepresenting this issue and he attempted to claim confusion and "multiple bills" and "procedures" to cloud the issue of his voting record.
All of which itself was a lie.
The record is clear: Barack Obama voted then, and remains now the only elected U.S. Senator to have voted in favor of denying life saving medical care to children who had been born.
PERIOD!
Last week, David Brody of CBN carried Obama's water for him when he said that saying such things amounted to over the top rhetoric. But what is over the top about being as specific as possible in telling the truth? Barack Obama voted in favor of infanticide. End of story. But why does it matter?
In a society that has continued to diminish the value of human life, perhaps Obama believes it won't matter. But for me it is very personal.
Because that little girl, who could have been denied life saving medical care, is named Eliza.
I've held her. I've hugged her. And I've kissed her forehead when she called me "Uncle Kevin."
She is three and half years old, and she is one of the healthiest, happiest, non-disabled children I've ever seen.
See, it turned out that the ultrasound machine and the readings it produced (which in turn had been the primary overriding reason why the abortion suggestion had been made so forcefully) was miscalibrated. Eliza's lungs were perfect, and her parents had a relatively normal delivery. And they have given her a wonderful childhood.
Barack Obama's indiscriminate political pandering may be a good enough reason to pick a running mate in Joe Biden, who openly thinks Obama's not ready to be president. But pandering is not a good enough reason for him to have been willing to let Eliza die. Not nearly good enough realizing now that there never was anything wrong with her. Not good enough at all!
But actually "not good enough" sums up Obama... pretty much... all the way around.
Eventually they decided to go for the ultrasound and prepare themselves for her arrival.
Only what they discovered was not what they had expected.
With the conclusion of the ultrasound pending, the technician left the room with a worried look on her face. A few minutes later, a senior doctor entered and relayed the sad news.
The ultrasound showed an echo-genic condition. This particular cause for concern was due to the lungs of the unborn child showing up brighter on the ultrasound reading than the medical doctors felt they "should be" at that point in the pregnancy. Bright lungs on the ultrasound, they were informed, indicated a high probability of Down's syndrome. Understanding the repulsion that disabled children were in a state that Barack Obama served in, the conclusion was clear: this child must be aborted. So with all the grace of a semi-truck hitting a brick wall at top speed, the doctor flatly informed the baby's mother that in the state of Illinois, there were only a limited number of days to have an "induced labor procedure" (abortion). They strongly suggested that the mother and father consider and pursue this "solution" to the "Down's question."
The parents chose instead to pursue additional and frequent ultrasounds roughly every two weeks for a period of time to see if there were any further developments.
You see, in Barack Obama's twisted world, not to mention that of the medical and abortion industries in his home state, the push was on--test for Down's, and do an "induced labor procedure" (abortion). Additionally, in this messed up universe, Obama specifically and single handedly saw to it that if the child had struggled with the chemical process of the "induced labor procedure" (abortion) and survived, she would not have been allowed any medical care to save her life.
But that is the way of the world for Barack Obama, the medical practitioners that terminate pregnancies, and the hospital named "Christ" that performs these procedures. Oh and did I mention that it is Obama's own religious denomination that operates said hospital?
But I can't help but ask the question: "Why does Obama pursue such outcomes?"
Perhaps it's because neither of his children have had anything but a beautiful life, and a pleasurable home to experience. But do handicapped children deserve less from life because of some mental or physical limitation? The Paralympics are just around the corner. Does Obama believe we would have been a more just society if those athletes had each been aborted, or left to die in a soiled utility closet even if born?
Last week, Barack Obama called those of us who have told the truth about his position on this issue "liars." He said that we were misrepresenting this issue and he attempted to claim confusion and "multiple bills" and "procedures" to cloud the issue of his voting record.
All of which itself was a lie.
The record is clear: Barack Obama voted then, and remains now the only elected U.S. Senator to have voted in favor of denying life saving medical care to children who had been born.
PERIOD!
Last week, David Brody of CBN carried Obama's water for him when he said that saying such things amounted to over the top rhetoric. But what is over the top about being as specific as possible in telling the truth? Barack Obama voted in favor of infanticide. End of story. But why does it matter?
In a society that has continued to diminish the value of human life, perhaps Obama believes it won't matter. But for me it is very personal.
Because that little girl, who could have been denied life saving medical care, is named Eliza.
I've held her. I've hugged her. And I've kissed her forehead when she called me "Uncle Kevin."
She is three and half years old, and she is one of the healthiest, happiest, non-disabled children I've ever seen.
See, it turned out that the ultrasound machine and the readings it produced (which in turn had been the primary overriding reason why the abortion suggestion had been made so forcefully) was miscalibrated. Eliza's lungs were perfect, and her parents had a relatively normal delivery. And they have given her a wonderful childhood.
Barack Obama's indiscriminate political pandering may be a good enough reason to pick a running mate in Joe Biden, who openly thinks Obama's not ready to be president. But pandering is not a good enough reason for him to have been willing to let Eliza die. Not nearly good enough realizing now that there never was anything wrong with her. Not good enough at all!
But actually "not good enough" sums up Obama... pretty much... all the way around.
Thursday, July 31, 2008
Genetic testing of kids could pose a dilemma
Would you want to know if condition is incurable?
By PAUL NYHAN
P-I REPORTER
Would you want to know if your toddler is more likely to develop Alzheimer's?
In the next two decades, parents are expected to have new options to test their children for genetic traits that raise the odds they will contract any number of conditions, such type 2 diabetes, depression and possibly autism, experts suggested last week.
Those breakthroughs are expected to push parents deeper into the ethically fuzzy world of genetic testing, where there appear to be more questions than answers.
Do you test a newborn for a disorder that has no cure? Does a child, or her parent, need to know she carries the gene that makes her susceptible to breast cancer?
A "core piece of advice is you shouldn't do genetic testing just because it's available," said Dr. Douglas Diekema, who works on pediatric bioethics at Seattle Children's Hospital and Regional Medical Center. "If there is a test (that) came back positive, what would be the benefit for my child? Is there something we could do?"
Children's Hospital is near the center of this debate because it's home to one of the country's few organized centers for pediatric bioethics.
It sponsored a conference on the topic last weekend.
At the center, doctors work with geneticists, genetic counselors and policymakers to understand the rapidly evolving area and help with specific cases.
Researchers across the country are grappling with emerging challenges of genetic testing.
Six years ago, most states screened newborns for a handful of disorders,and today most screen for 29.
Washington screens for 24 disorders, including phenylketonuria and cystic fibrosis, and will add a 25th by the end of August.
While tests are largely mandatory – some parents may opt out for religious reasons – in coming years parents may face decisions of what or whether to test for other disorders, if testing is expanded.
It will create yet another level of knowledge for a generation of parents already coping with a mother lode of information.
"There is so much information out there, there is the danger of misinformation and information overload," said Mirtha Wilkens, a media project manager for Children's Hospital, who is expecting her second child this fall.
In the next couple of years, doctors may begin expanding tests by adding disorders that can't currently be treated, such as Duchenne muscular dystrophy and spinal muscular atrophy.
The move would represent a major shift because babies currently are mainly tested for treatable genetic disorders.
As parents of two adopted children, Andy and Pam Heyman see the benefit and ambiguity of pediatric genetic tests.
When the South Seattle couple adopted their two children, they had to decide if they would accept a child with sickle cell anemia – a tested condition – during the process.
They said yes and their 9-year-old daughter, Josie, has sickle cell, while 4-year-old Adam does not.
Yet, Andy Heyman, 38, isn't not sure he would embrace tests that may emerge unless there is compelling evidence that parents can do something about the condition.
Heyman also worries about how institutions would use genetic test results.
"If choice rests with individuals, I am much more comfortable than if it's (in the) hands of institutions," he said.
Expanded newborn testing could create a new set of worries and opportunities for parents. They will receive more false positives if there are more tests and get called back for anxious second tests.
Some parents may want to know about incurable disorders so they can adjust their lives, and more diagnoses might create more research opportunities and potentially treatment breakthroughs, experts said at last weekend's conference.
If parents are going to be confused, scientists already are grappling with their own ethical confusion.
For example, researchers are uncovering genetic flaws that might be evidenceof cystic fibrosis. And they may not be.
In a child with no symptoms, they see genes that are not quite normal, yet not typical evidence of cystic fibrosis, according to Dr. Beth Tarini, a research investigator at University of Michigan's Child Health Evaluation and Research Unit.
"You are left telling the parents 'I am not sure if your child has cystic fibrosis,' " Tarini told a room full of researchers during last weekend's conference.
If doctors and researchers are conflicted, what are parents supposed to do?
In the information age, parents have resources, but they should beware because the quality of online genetic testing guides varies.
"I think as a general rule that (sites) either sponsored by NIH (National Institutes of Health) or academic institutions are the most likely to be reliable," said Children's Hospital's Diekema.
Of course, your best source often is your family's doctor, Diekema suggested.
In the uncertain field of pediatric genetic testing one thing appears certain: It will add another level of worry to the often anxiety-ridden job of parenting.
"Becoming a parent there is enough to worry about," Andy Heyman said.
By PAUL NYHAN
P-I REPORTER
Would you want to know if your toddler is more likely to develop Alzheimer's?
In the next two decades, parents are expected to have new options to test their children for genetic traits that raise the odds they will contract any number of conditions, such type 2 diabetes, depression and possibly autism, experts suggested last week.
Those breakthroughs are expected to push parents deeper into the ethically fuzzy world of genetic testing, where there appear to be more questions than answers.
Do you test a newborn for a disorder that has no cure? Does a child, or her parent, need to know she carries the gene that makes her susceptible to breast cancer?
A "core piece of advice is you shouldn't do genetic testing just because it's available," said Dr. Douglas Diekema, who works on pediatric bioethics at Seattle Children's Hospital and Regional Medical Center. "If there is a test (that) came back positive, what would be the benefit for my child? Is there something we could do?"
Children's Hospital is near the center of this debate because it's home to one of the country's few organized centers for pediatric bioethics.
It sponsored a conference on the topic last weekend.
At the center, doctors work with geneticists, genetic counselors and policymakers to understand the rapidly evolving area and help with specific cases.
Researchers across the country are grappling with emerging challenges of genetic testing.
Six years ago, most states screened newborns for a handful of disorders,and today most screen for 29.
Washington screens for 24 disorders, including phenylketonuria and cystic fibrosis, and will add a 25th by the end of August.
While tests are largely mandatory – some parents may opt out for religious reasons – in coming years parents may face decisions of what or whether to test for other disorders, if testing is expanded.
It will create yet another level of knowledge for a generation of parents already coping with a mother lode of information.
"There is so much information out there, there is the danger of misinformation and information overload," said Mirtha Wilkens, a media project manager for Children's Hospital, who is expecting her second child this fall.
In the next couple of years, doctors may begin expanding tests by adding disorders that can't currently be treated, such as Duchenne muscular dystrophy and spinal muscular atrophy.
The move would represent a major shift because babies currently are mainly tested for treatable genetic disorders.
As parents of two adopted children, Andy and Pam Heyman see the benefit and ambiguity of pediatric genetic tests.
When the South Seattle couple adopted their two children, they had to decide if they would accept a child with sickle cell anemia – a tested condition – during the process.
They said yes and their 9-year-old daughter, Josie, has sickle cell, while 4-year-old Adam does not.
Yet, Andy Heyman, 38, isn't not sure he would embrace tests that may emerge unless there is compelling evidence that parents can do something about the condition.
Heyman also worries about how institutions would use genetic test results.
"If choice rests with individuals, I am much more comfortable than if it's (in the) hands of institutions," he said.
Expanded newborn testing could create a new set of worries and opportunities for parents. They will receive more false positives if there are more tests and get called back for anxious second tests.
Some parents may want to know about incurable disorders so they can adjust their lives, and more diagnoses might create more research opportunities and potentially treatment breakthroughs, experts said at last weekend's conference.
If parents are going to be confused, scientists already are grappling with their own ethical confusion.
For example, researchers are uncovering genetic flaws that might be evidenceof cystic fibrosis. And they may not be.
In a child with no symptoms, they see genes that are not quite normal, yet not typical evidence of cystic fibrosis, according to Dr. Beth Tarini, a research investigator at University of Michigan's Child Health Evaluation and Research Unit.
"You are left telling the parents 'I am not sure if your child has cystic fibrosis,' " Tarini told a room full of researchers during last weekend's conference.
If doctors and researchers are conflicted, what are parents supposed to do?
In the information age, parents have resources, but they should beware because the quality of online genetic testing guides varies.
"I think as a general rule that (sites) either sponsored by NIH (National Institutes of Health) or academic institutions are the most likely to be reliable," said Children's Hospital's Diekema.
Of course, your best source often is your family's doctor, Diekema suggested.
In the uncertain field of pediatric genetic testing one thing appears certain: It will add another level of worry to the often anxiety-ridden job of parenting.
"Becoming a parent there is enough to worry about," Andy Heyman said.
Children's Development Center helps autistic children develop
It was more than a year ago that Megan Ruth first realized her son Kaeden Badger wasn't "doing things a normal 2-year-old should do."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
Children's Development Center helps autistic children develop
It was more than a year ago that Megan Ruth first realized her son Kaeden Badger wasn't "doing things a normal 2-year-old should do."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
"We had tremendous communication issues," Ruth recalled.
When she was told her son had autism, she enrolled him in Reaching Beyond Limits, a pre-school class at the Children's Development Center for autistic children and children with severe language delay.
"Within two months of him being at the CDC, it went from him falling on the ground and crying, to taking my hand and walking me somewhere," Ruth said.
She learns about her son's school day from a report sent home daily, documenting what he eats, says, plays with and more.
"When I ask him if he did this or that, he doesn't give me a response. He's nonverbal," Ruth said.
About a month ago, the students in Kaeden's class went on a field trip to a therapeutic horse-
riding facility. When Ruth asked her son about his day, "he stood up in his chair and started to clap. That was the first time I had gotten any feedback."
One day she visited the class to see her son spelling out his name with Scrabble tiles.
"I was blown away," she said.
On a typical school day, Kaeden joins five other preschool-aged boys. Their day begins with large headphones over their ears and a compact disc player strapped around them as they sit at the small table, waiting for snacks and juice.
Sounds and music at alternating volumes, changing from ear to ear, help engage different parts of the brain, teacher Christine King explained.
From King, therapeutic support staff member Gina Mostoller, occupational therapy assistant student Melissa Good, speech language pathologist Joan Dice and certified occupational therapy assistant Renee Cerney, the students receive personalized attention each day to help them build relationships.
"Our goal is to get the kids to interact with us," King said, while asking a student if he would like a cracker.
She and the other instructors use simple sign language while speaking about the food.
"Most of them are very low verbal," King said.
"If they don't talk, they have to have some way to communicate," Good said.
The students have to work for their snacks and toys. The instructors wait for a child to request an item.
"Sometimes it's a matter of requiring them to use their language," King said.
Autism is "a spectrum disorder," Mostoller said, which means each child's symptoms are different, ranging from verbal skills, sensitivity to different touches, lack of awareness of their body and more.
Throughout the day, the children do "heavy work" such as dragging a bag full of corn and wearing weighted vests during therapy sessions. Instructors also apply "deep pressure" by pressing against the boys' shoulders and arms.
"It gives them a sense of their bodies," Mostoller said.
Before lunch, the students rotate through "centers," each one focusing on a separate function.
In the "boxes" center, the goal is for children to work independently by sorting colors and shapes.
In the gym, Cerney activates different muscle groups with swings, scooter boards, puzzles and a climbing wall. During floor time on this day, students play, jump, laugh and discover toys one-on-one to develop "circles of communication."
"You have to get into their space and have them look at you and respond," Dice said. "A lot of the activities we do to help them organize the sensory input, helping them make sense of the world around them."
Five-year-old Jordan Kiessling is preparing to enter his second year in the program. His mother, Deborah Kiessling, said her son has made more progress in the Reaching Beyond Limits class than in other programs.
"Now he's beginning to say a lot of words. His eye contact has been a big leap for him ... When you call his name, he's responding," she said.
She credits the sensory stimulation as part of Jordan's success.
"At CDC, it's the first time I've seen more progress and results as far as eye contact, interaction with others and wanting to try things. It's really helped him a lot," Kiessling said. "I give it five stars."
Gabriel Walter, 5, has been in the class since October and is preparing to soon graduate from Reaching Beyond Limits. His father, Joe Walter, said Gabriel has become more independent, his vocabulary has improved and he now forms whole sentences.
"We have come a long way. You can carry a conversation with him now. It just kind of happened overnight," Walter said.
Although he admitted to being skeptical about the program at first, Walter said the individualized attention is helpful.
"I'd recommend it for anyone," he said of the program. "It's just awesome."
Parents concerned about autism are watching and wondering
What is normal behavior and what are the early signs of autism? Today’s concerned parents are swamping medical experts with questions and concerns.
By KATHLEEN O'BRIEN
Newhouse News Service
Sandra Devlin cradles her newborn daughter, Delilah, with the same devotion she lavished on her four older children.
"De-li-lah," she coos in a singsong voice, holding the 4-month-old baby close to her face. As she did with her other kids, she hopes to elicit a smile, a laugh or a gurgle of recognition.
It’s a time-honored mother’s gesture — but one that now comes with a twist: This time, Devlin is also checking for autism.
Every generation of parents has a worry unique to its era. In the ’40s, the specter of polio made mothers frantic about any trip to the neighborhood swimming pool. The ’80s brought the sense that every child risked abduction, his photo ending up on the side of a milk carton.
For today’s parents, that fear is autism.
"In my office, that’s the big elephant in the room. They’ll ask about something else, but what they’re really asking is, 'He doesn’t have autism, does he?’ It is the question for this generation," said Dr. Ari Brown, a Texas pediatrician and spokeswoman for the American Academy of Pediatrics.
With autism spectrum disorders now diagnosed in 1 out of 150 children nationally, rare is the parent who isn’t aware of autism. And with that awareness can come a new wariness of vaccines, which a vocal minority of autism activists blame for the jump in cases. Pediatricians report seeing more parents question, delay or even shun altogether the traditional round of childhood immunizations.
Such worries never crossed the mind of Devlin, of Denville, N.J., with her first two children, now 19 and 13. Autism arrived on her radar screen for the next two kids, now 9 and 3. With Delilah, born 11 weeks prematurely, that concern is front and center.
"I never did that with my older kids," she said of her new habit of checking for eye contact from Delilah. "But now I’m looking specifically for autism."
Parents noticing milestones
Pediatricians say this worry has its benefits: Parents are more aware of crucial child-development milestones and as a result, they are quicker to pick up on lags. That may mean some cases of autism — maddeningly difficult to catch in the youngest toddlers — are diagnosed earlier.
"If you have a child who doesn’t talk, I think in other generations they would’ve said, 'Oh, he’s a late bloomer.’ It wasn’t a big deal," said Mary Jean Wick, a mother of five. "Now it’s definitely a fear for this age of parent."
However, it can make some parents see autism behind every bush.
"Thirteen years ago, parents wouldn’t be able to answer the question, 'How does your child play?’ " Brown said of her early years in practice. "Now you hear, 'Oh my God, my child lines up his trains. Does he have autism?’ There are these extreme parents who think every little thing is autism. I have to say to them, 'Sometimes kids can be quirky.’ "
Autism spectrum disorders are developmental disabilities marked by an impairment of social interaction combined with communication problems and restricted or repetitive behaviors and interests. The spectrum encompasses a wide variety of thinking and learning abilities, from gifted to severely challenged. While its prevalence has soared in recent years, experts are unsure whether more cases are occurring or simply more cases are being diagnosed.
Some parents will single out one small trait or habit of their children as a "symptom" of an autism spectrum disorder, said Michael Segarra, president of the New Jersey chapter of the American Academy of Pediatrics.
When a parent voices concern that a child plays with only one toy, for instance, Segarra will ask a checklist of questions about the child’s social interaction. This helps the parent see the big picture.
Some parents accept their pediatrician’s reassurances. Others don’t — leading to more referrals to specialists.
The question of immunizations
Apprehension about autism shows up most dramatically with the issue of child immunizations, which some parents view as a culprit in the recent rise in autism.
A major study released last year in the New England Journal of Medicine shows no association between long-term neurological and psychological problems and early exposure to thimerasol — which contains mercury — in shots. (Use of thimerasol in routine vaccines was stopped in 2001.)
However, that has not reassured everyone.
A poll of parents of autistic children showed 54 percent believe autism is caused by vaccination shots, according to Harvey Bennett, director of Child Neurology and Development Medicine at Goryeb Children’s Hospital in Morristown, N.J. At a recent talk before a group of family physicians, he called that finding worrisome and "astounding."
Pediatricians report more parents are delaying shots, asking that they be spaced out or refusing them altogether.
"They don’t listen to me. They don’t believe a word I say," said Naomi Grobstein, a pediatrician with the Family Health Center of Montclair, N.J. "They say, 'He’s not ready!’ or 'He’s too young!’ "
She reminds parents of the lethal risk posed by diseases like measles, diphtheria and tetanus.
"It’s easy to believe these shots aren’t necessary, because we don’t see these diseases anymore," she said. "I ask them, 'What if your child is the one who spreads measles around?’ "
Complicating the picture are celebrities who either blame or suspect vaccines, such as actress Jenny McCarthy and radio talk show host Don Imus. Doctors complain that the celebrities get an unquestioning ride in the media.
Wick, the mother of five children ages 1 to 11, said she has worried about immunizations but decided to get her kids vaccinated. "I can see that there are people who just panic," she said. "But maybe that’s something in the culture, that we just want to control everything."
It’s important to address that anxiety, said Brown, the Texas pediatrician who is also author of Baby 411(Windsor Peak Press, $11.95), an advice book. "If there is something that is keeping you up at night with worry, then you need to go to the pediatrician to check it out," she said. "That peace of mind is worth the co-pay."
There are these extreme parents who think every little thing is autism."
Dr. Ari Brown,
Texas pediatrician and spokeswoman for the American Academy of Pediatrics
By KATHLEEN O'BRIEN
Newhouse News Service
Sandra Devlin cradles her newborn daughter, Delilah, with the same devotion she lavished on her four older children.
"De-li-lah," she coos in a singsong voice, holding the 4-month-old baby close to her face. As she did with her other kids, she hopes to elicit a smile, a laugh or a gurgle of recognition.
It’s a time-honored mother’s gesture — but one that now comes with a twist: This time, Devlin is also checking for autism.
Every generation of parents has a worry unique to its era. In the ’40s, the specter of polio made mothers frantic about any trip to the neighborhood swimming pool. The ’80s brought the sense that every child risked abduction, his photo ending up on the side of a milk carton.
For today’s parents, that fear is autism.
"In my office, that’s the big elephant in the room. They’ll ask about something else, but what they’re really asking is, 'He doesn’t have autism, does he?’ It is the question for this generation," said Dr. Ari Brown, a Texas pediatrician and spokeswoman for the American Academy of Pediatrics.
With autism spectrum disorders now diagnosed in 1 out of 150 children nationally, rare is the parent who isn’t aware of autism. And with that awareness can come a new wariness of vaccines, which a vocal minority of autism activists blame for the jump in cases. Pediatricians report seeing more parents question, delay or even shun altogether the traditional round of childhood immunizations.
Such worries never crossed the mind of Devlin, of Denville, N.J., with her first two children, now 19 and 13. Autism arrived on her radar screen for the next two kids, now 9 and 3. With Delilah, born 11 weeks prematurely, that concern is front and center.
"I never did that with my older kids," she said of her new habit of checking for eye contact from Delilah. "But now I’m looking specifically for autism."
Parents noticing milestones
Pediatricians say this worry has its benefits: Parents are more aware of crucial child-development milestones and as a result, they are quicker to pick up on lags. That may mean some cases of autism — maddeningly difficult to catch in the youngest toddlers — are diagnosed earlier.
"If you have a child who doesn’t talk, I think in other generations they would’ve said, 'Oh, he’s a late bloomer.’ It wasn’t a big deal," said Mary Jean Wick, a mother of five. "Now it’s definitely a fear for this age of parent."
However, it can make some parents see autism behind every bush.
"Thirteen years ago, parents wouldn’t be able to answer the question, 'How does your child play?’ " Brown said of her early years in practice. "Now you hear, 'Oh my God, my child lines up his trains. Does he have autism?’ There are these extreme parents who think every little thing is autism. I have to say to them, 'Sometimes kids can be quirky.’ "
Autism spectrum disorders are developmental disabilities marked by an impairment of social interaction combined with communication problems and restricted or repetitive behaviors and interests. The spectrum encompasses a wide variety of thinking and learning abilities, from gifted to severely challenged. While its prevalence has soared in recent years, experts are unsure whether more cases are occurring or simply more cases are being diagnosed.
Some parents will single out one small trait or habit of their children as a "symptom" of an autism spectrum disorder, said Michael Segarra, president of the New Jersey chapter of the American Academy of Pediatrics.
When a parent voices concern that a child plays with only one toy, for instance, Segarra will ask a checklist of questions about the child’s social interaction. This helps the parent see the big picture.
Some parents accept their pediatrician’s reassurances. Others don’t — leading to more referrals to specialists.
The question of immunizations
Apprehension about autism shows up most dramatically with the issue of child immunizations, which some parents view as a culprit in the recent rise in autism.
A major study released last year in the New England Journal of Medicine shows no association between long-term neurological and psychological problems and early exposure to thimerasol — which contains mercury — in shots. (Use of thimerasol in routine vaccines was stopped in 2001.)
However, that has not reassured everyone.
A poll of parents of autistic children showed 54 percent believe autism is caused by vaccination shots, according to Harvey Bennett, director of Child Neurology and Development Medicine at Goryeb Children’s Hospital in Morristown, N.J. At a recent talk before a group of family physicians, he called that finding worrisome and "astounding."
Pediatricians report more parents are delaying shots, asking that they be spaced out or refusing them altogether.
"They don’t listen to me. They don’t believe a word I say," said Naomi Grobstein, a pediatrician with the Family Health Center of Montclair, N.J. "They say, 'He’s not ready!’ or 'He’s too young!’ "
She reminds parents of the lethal risk posed by diseases like measles, diphtheria and tetanus.
"It’s easy to believe these shots aren’t necessary, because we don’t see these diseases anymore," she said. "I ask them, 'What if your child is the one who spreads measles around?’ "
Complicating the picture are celebrities who either blame or suspect vaccines, such as actress Jenny McCarthy and radio talk show host Don Imus. Doctors complain that the celebrities get an unquestioning ride in the media.
Wick, the mother of five children ages 1 to 11, said she has worried about immunizations but decided to get her kids vaccinated. "I can see that there are people who just panic," she said. "But maybe that’s something in the culture, that we just want to control everything."
It’s important to address that anxiety, said Brown, the Texas pediatrician who is also author of Baby 411(Windsor Peak Press, $11.95), an advice book. "If there is something that is keeping you up at night with worry, then you need to go to the pediatrician to check it out," she said. "That peace of mind is worth the co-pay."
There are these extreme parents who think every little thing is autism."
Dr. Ari Brown,
Texas pediatrician and spokeswoman for the American Academy of Pediatrics
Wednesday, July 30, 2008
Leading Dr.: Vaccines-Autism Worth Study
CBS News Exclusive: Former Head Of NIH Says Government Too Quick To Dismiss Possible Link
CBS) CBS News correspondent Sharyl Attkisson wrote this story for CBSNews.com.
Jordan King was a typical baby. His parents called him vocal and vivacious.
Then just before age 2, after a large battery of vaccinations, he simply withdrew from the world.
"The real scary thing was when I noticed he wasn't looking at us any more in the eyes," Mylinda King, Jordan's mother, said.
William Mead was a Pottery Barn baby model and met all the typical milestones. Then, also at age 2, after a set of vaccinations, William became very ill and he, too, changed forever.
At first, both sets of parents suspected hearing problems.
"The reason we had him tested for a hearing deficit was 'cause he wouldn't respond to us," Mead said. "He no longer used any of his language."
"We had him tested for deafness, it was that bad," King said. "I mean, you could slam a book on the floor and he wouldn't turn around to see what the sound was. It was like he was in this bubble of somewhere else, like he'd left the planet or something."
Doctors said it wasn’t a hearing problem … it was the brain disorder autism.
In both children, batteries of tests revealed dangerous levels of the brain toxin mercury in their systems. Their only known exposure: the mercury preservative once widely used in childhood shots.
"Our doctor, Dr. Green, said 'you can stop looking for sources'," King said. "I know where it came from and it was … when he told us it was the vaccines, you just can't believe it."
Now, William and Jordan are two test cases among nearly 5,000 autism claims filed in federal vaccine court. Most claim that mercury, or MMR shots, or both, resulted in their children’s autism.
Government officials and many scientists insist there’s nothing about vaccines that can lead to autism.
"I think it's important for the average parent to know that the government hasn't made a link between vaccines and autism," said Dr. Anne Schuchat of the Centers for Disease Control.
Dr. Bernadine Healy is the former head of the National Institutes of Health, and the most well-known medical voice yet to break with her colleagues on the vaccine-autism question.
In an exclusive interview with CBS News, Healy said the question is still open.
"I think that the public health officials have been too quick to dismiss the hypothesis as irrational," Healy said.
"But public health officials have been saying they know, they've been implying to the public there's enough evidence and they know it's not causal," Attkisson said.
"I think you can't say that," Healy said. "You can't say that."
Read more about the "open questions" of autism at Couric & Co.
Healy goes on to say public health officials have intentionally avoided researching whether subsets of children are “susceptible” to vaccine side effects - afraid the answer will scare the public.
"You're saying that public health officials have turned their back on a viable area of research largely because they're afraid of what might be found?" Attkisson asked.
Healy said: "There is a completely expressed concern that they don't want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. "First of all," Healy said, "I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show."
As an example, Healy points to the existing vaccine court claims.
CBS News has learned the government has paid more than 1,300 brain injury claims in vaccine court since 1988, but is not studying those cases or tracking how many of them resulted in autism.
The branch of the government that handles vaccine court told CBS News: “Some children who have been compensated for vaccine injuries…may ultimately end up with autism or autistic symptoms, but we do not track cases on this basis.”
"What we’re seeing in the bulk of the population: vaccines are safe," said Healy. "But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?"
Government officials would not respond directly to Healy’s views… but reiterated, vaccines are safe.
Like Healy, the Kings and the Meads support vaccination, but say it can be made safer.
At age 10, William’s life is full of intensive therapy.
"Horrifying is a good word," his father George said. "It was horrendous to watch your own child become, in effect, a zombie. It's something I wouldn't wish on my worst enemy. It was awful."
Jordan, also 10, can't even communicate as well as he did as a toddler.
"Oh yeah, he doesn't talk at all anymore" said Jordan's father, Fred.
Public health officials insist there’s no connection to their shots. Thousands of families are hoping for a different answer in vaccine court.
CBS) CBS News correspondent Sharyl Attkisson wrote this story for CBSNews.com.
Jordan King was a typical baby. His parents called him vocal and vivacious.
Then just before age 2, after a large battery of vaccinations, he simply withdrew from the world.
"The real scary thing was when I noticed he wasn't looking at us any more in the eyes," Mylinda King, Jordan's mother, said.
William Mead was a Pottery Barn baby model and met all the typical milestones. Then, also at age 2, after a set of vaccinations, William became very ill and he, too, changed forever.
At first, both sets of parents suspected hearing problems.
"The reason we had him tested for a hearing deficit was 'cause he wouldn't respond to us," Mead said. "He no longer used any of his language."
"We had him tested for deafness, it was that bad," King said. "I mean, you could slam a book on the floor and he wouldn't turn around to see what the sound was. It was like he was in this bubble of somewhere else, like he'd left the planet or something."
Doctors said it wasn’t a hearing problem … it was the brain disorder autism.
In both children, batteries of tests revealed dangerous levels of the brain toxin mercury in their systems. Their only known exposure: the mercury preservative once widely used in childhood shots.
"Our doctor, Dr. Green, said 'you can stop looking for sources'," King said. "I know where it came from and it was … when he told us it was the vaccines, you just can't believe it."
Now, William and Jordan are two test cases among nearly 5,000 autism claims filed in federal vaccine court. Most claim that mercury, or MMR shots, or both, resulted in their children’s autism.
Government officials and many scientists insist there’s nothing about vaccines that can lead to autism.
"I think it's important for the average parent to know that the government hasn't made a link between vaccines and autism," said Dr. Anne Schuchat of the Centers for Disease Control.
Dr. Bernadine Healy is the former head of the National Institutes of Health, and the most well-known medical voice yet to break with her colleagues on the vaccine-autism question.
In an exclusive interview with CBS News, Healy said the question is still open.
"I think that the public health officials have been too quick to dismiss the hypothesis as irrational," Healy said.
"But public health officials have been saying they know, they've been implying to the public there's enough evidence and they know it's not causal," Attkisson said.
"I think you can't say that," Healy said. "You can't say that."
Read more about the "open questions" of autism at Couric & Co.
Healy goes on to say public health officials have intentionally avoided researching whether subsets of children are “susceptible” to vaccine side effects - afraid the answer will scare the public.
"You're saying that public health officials have turned their back on a viable area of research largely because they're afraid of what might be found?" Attkisson asked.
Healy said: "There is a completely expressed concern that they don't want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. "First of all," Healy said, "I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show."
As an example, Healy points to the existing vaccine court claims.
CBS News has learned the government has paid more than 1,300 brain injury claims in vaccine court since 1988, but is not studying those cases or tracking how many of them resulted in autism.
The branch of the government that handles vaccine court told CBS News: “Some children who have been compensated for vaccine injuries…may ultimately end up with autism or autistic symptoms, but we do not track cases on this basis.”
"What we’re seeing in the bulk of the population: vaccines are safe," said Healy. "But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?"
Government officials would not respond directly to Healy’s views… but reiterated, vaccines are safe.
Like Healy, the Kings and the Meads support vaccination, but say it can be made safer.
At age 10, William’s life is full of intensive therapy.
"Horrifying is a good word," his father George said. "It was horrendous to watch your own child become, in effect, a zombie. It's something I wouldn't wish on my worst enemy. It was awful."
Jordan, also 10, can't even communicate as well as he did as a toddler.
"Oh yeah, he doesn't talk at all anymore" said Jordan's father, Fred.
Public health officials insist there’s no connection to their shots. Thousands of families are hoping for a different answer in vaccine court.
WINA drops show over autism cracks
After comments blasting autism as just another over-diagnosed American problem, controversial radio personality Michael Savage has been dumped by a Charlottesville station. And for at least one local talk-radio host, the dismissal of “The Savage Nation” comes none too soon.
“As the father of a six-year-old boy who has been diagnosed with autism,” says WINA personality Coy Barefoot, “I was outraged. He clearly is spreading what I know to be outright lies about autism.”
“I’ll tell you what autism is,” Savage boomed in his July 16 broadcast. “In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”
“Quite honestly, it came down to common decency,” says WINA program director Rick Daniels. “Although he was trying to make a bigger point, he didn’t clarify it at all. We took into account our listeners and some feedback we’ve gotten, and we wanted to do what was best for our community.”
While Savage’s syndicator, Talk Radio Network, found the comments merely “inartful,” Media Matters, a D.C.-based organization “dedicated to correcting conservative misinformation” agrees with WINA that the comments were out of line.
“I think he and the people who use the airwaves have an ethical responsibility not to be lying and not to be so hatefully offensive that they cause this much controversy,” says Ben Fishel, a spokesperson for Media Matters.
However, Charlottesville resident and long-time “Savage Nation” listener Linda McRaven disagrees. “Media Matters is looking for bombs,” says McRaven. “They’re not really valid critics.”
McRaven says that she’s a fan of Savage because of his fearlessness. “I call him a flame-thrower because he’s so passionate about what he feels,” she says. “He pulls no punches, and I really admire that. We are entirely too politically correct, and he just says what he thinks. In my opinion, a lot of things he says are right on.”
Both Aflac Insurance and Home Depot have reportedly pulled their sponsorships of his show in reaction to Savage’s comments, but according to Daniels, none of WINA’s local advertisers had made such a move— or even any comment— by the time of Savage’s removal.
Fishel is especially baffled by the way Savage’s comments might come across to parents of autistic children.
“Disciplining your child can cure autism?” he asks. “That is absurdly false and hateful, especially to these parents who have committed their whole lives to children with special needs.”
“Where do we draw the line with what is done with our public airwaves?” asks Barefoot. “What’s next, these kids with cancer should get up and walk it off?”
On his afternoon program “Charlottesville, Right Now,” Barefoot played excerpts of the controversial comments and shared his perspective. But the decision to remove Savage was the program director’s, not his.
“I think they did the right thing,” Barefoot says, noting that since Savage’s removal, WINA has received emails from around the country applauding the action.
In an email of his own, Savage tells the Hook, “The drug companies are very powerful and have worked very hard to silence any voice critical of the misdiagnosis of our children and the drugging of vulnerable minds. Sad the station manager is such an ignorant man.
Daniels says he has received what he called “overwhelmingly positive” reactions to the ouster, and only a handful of complaints, most of which he characterizes as freedom of speech concerns.
“There are hundreds of syndicated talk shows out there,” says Daniels, “and each one has the right to be heard, but we can’t run them all. We pick the best ones for Charlottesville, our listeners, and the community.”
On WINA— at 1070 AM— Savage’s program has been replaced with David Ramsey, who deals with get-out-of-debt and money management issues. “I think just about all of us,” Daniels says, “could use good financial advice these days.”
Savage added in his email that Charlottesville listeners could soon continue to hear his program on a station “across the street,” though Julian Hudson, Talk Radio Network’s affiliate director, could not confirm that any Charlottesville station is poised to pick up “The Savage Nation.” Dennis Mockler, general manager of Monticello Media, the other major radio group in Charlottesville, says his stations have no plans to pick up the show.
“As the father of a six-year-old boy who has been diagnosed with autism,” says WINA personality Coy Barefoot, “I was outraged. He clearly is spreading what I know to be outright lies about autism.”
“I’ll tell you what autism is,” Savage boomed in his July 16 broadcast. “In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’”
“Quite honestly, it came down to common decency,” says WINA program director Rick Daniels. “Although he was trying to make a bigger point, he didn’t clarify it at all. We took into account our listeners and some feedback we’ve gotten, and we wanted to do what was best for our community.”
While Savage’s syndicator, Talk Radio Network, found the comments merely “inartful,” Media Matters, a D.C.-based organization “dedicated to correcting conservative misinformation” agrees with WINA that the comments were out of line.
“I think he and the people who use the airwaves have an ethical responsibility not to be lying and not to be so hatefully offensive that they cause this much controversy,” says Ben Fishel, a spokesperson for Media Matters.
However, Charlottesville resident and long-time “Savage Nation” listener Linda McRaven disagrees. “Media Matters is looking for bombs,” says McRaven. “They’re not really valid critics.”
McRaven says that she’s a fan of Savage because of his fearlessness. “I call him a flame-thrower because he’s so passionate about what he feels,” she says. “He pulls no punches, and I really admire that. We are entirely too politically correct, and he just says what he thinks. In my opinion, a lot of things he says are right on.”
Both Aflac Insurance and Home Depot have reportedly pulled their sponsorships of his show in reaction to Savage’s comments, but according to Daniels, none of WINA’s local advertisers had made such a move— or even any comment— by the time of Savage’s removal.
Fishel is especially baffled by the way Savage’s comments might come across to parents of autistic children.
“Disciplining your child can cure autism?” he asks. “That is absurdly false and hateful, especially to these parents who have committed their whole lives to children with special needs.”
“Where do we draw the line with what is done with our public airwaves?” asks Barefoot. “What’s next, these kids with cancer should get up and walk it off?”
On his afternoon program “Charlottesville, Right Now,” Barefoot played excerpts of the controversial comments and shared his perspective. But the decision to remove Savage was the program director’s, not his.
“I think they did the right thing,” Barefoot says, noting that since Savage’s removal, WINA has received emails from around the country applauding the action.
In an email of his own, Savage tells the Hook, “The drug companies are very powerful and have worked very hard to silence any voice critical of the misdiagnosis of our children and the drugging of vulnerable minds. Sad the station manager is such an ignorant man.
Daniels says he has received what he called “overwhelmingly positive” reactions to the ouster, and only a handful of complaints, most of which he characterizes as freedom of speech concerns.
“There are hundreds of syndicated talk shows out there,” says Daniels, “and each one has the right to be heard, but we can’t run them all. We pick the best ones for Charlottesville, our listeners, and the community.”
On WINA— at 1070 AM— Savage’s program has been replaced with David Ramsey, who deals with get-out-of-debt and money management issues. “I think just about all of us,” Daniels says, “could use good financial advice these days.”
Savage added in his email that Charlottesville listeners could soon continue to hear his program on a station “across the street,” though Julian Hudson, Talk Radio Network’s affiliate director, could not confirm that any Charlottesville station is poised to pick up “The Savage Nation.” Dennis Mockler, general manager of Monticello Media, the other major radio group in Charlottesville, says his stations have no plans to pick up the show.
Sunday, July 27, 2008
Is Autism an "American Disease?" Somali Immigrants Reportedly Have High Rates
A very interesting article was published today by Elizabeth Gorman on MinnPost.com that should be researched further: It might shine new light on genetic, and possibly environmental factors in autism.
The article reports that an unusually large proportion of Somali-speaking children in Minnesota have autism, something that has also been noted in Sweden, where Somali immigrants call autism "the Swedish Disease," because they did not see it back in East Africa.
According to the report, almost 6 percent of the Minneapolis school district's total enrollment is made up of Somali-speaking students. But in the city's early childhood and kindergarten programs, "more than 12 percent of the students with autism reported speaking Somali at home," and over "17 percent of students in the district's early childhood special education autism program are Somali speaking," the article said.
Somali kids with autism seem to be doing worse, on average, than their school mates: "About a quarter of all autism children who attend autism classrooms for students functioning too low to be mainstreamed in regular schoolrooms are Somali."
The statewide autism rate in Minnesota is already quite high -- at 100 per 10,000 children, as compared to the national average estimate of 67 per 10,000. In the Somali immigrant community, however, it could be much higher than either of those figures.
Why would that be? There is almost certainly a strong genetic connection at play here, but there may be other factors as well, including a lack of vitamin D from sunlight, (see the Swedish study in article) or, yes, vaccinations.
I do not know if vaccines are playing a role at all here. In fact, this report says that the Somali children were all born and vaccinated in the United States (though it seems to me that some must have immigrated here).
The "American Disease" idea comes from Somali parents themselves, and from some of the experts who work with them.
Anne Harrington, an early childhood special education coordinator for the Minneapolis school district and a specialist on the topic, told Gorman that Somalis "Are given more [vaccines] than we get, and sometimes they're doubled up. Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then suddenly they're getting just a wallop of them in the moms and then in the babies. That's certainly a concern that's been expressed to me by the Somali population."
I have never heard that before, and there may be nothing to it. On the other hand, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices recommends that refugee adults receive at least 10 vaccines -- including pregnant women. Some of them contain thimerosal.
In addition, any of these kids who are older than five -- meaning they were born in 2002 or earlier -- could have received thimerosal in their vaccines.
Whatever the reason for the apparent higher rates of autism (ie, genes, sunlight, vitamins, vaccines, all of the above, none of the above) it is an interesting phenomenon and, it seems to me, an intriguing avenue of research.
There are data out there to suggest that elevated autism rates may not be limited strictly to immigrants from Somalia:
# A study of pervasive developmental disorder (a form of ASD) prevalence in Montreal school districts in 2003-2004 showed that the average PDD rate in the city's five predominantly French-speaking school districts (ie, largely Canadian-born) was 42.3 per 10,000 students, but in the largely English-speaking school district, where many immigrant children live, the rate was 69.2 per 10,000.
# In the English-speaking district, although the overall PDD rate was 69.2 per 10,000, among foreign-born children it was 106.6 per 10,000, and among Canadian-born children it was 67.6 per 10,000 - or 58% higher in the foreign born population.
# In Sweden, researchers reported that the incidence of autism among Somali immigrant children is far higher than among children living in Somalia (though better medical care and diagnostics would play a role, I'd think). Swedish media report that Somalis living in Sweden have dubbed autism, "The Swedish disease," because it is so common among Somali immigrants.
# These data might support reports that autism rates are also higher in immigrant communities in North America. On June 6, 2007, the Canadian Broadcasting News reported that, "autism rates are higher in immigrant families." Health-care specialists in Montreal, it said, were, "trying to understand why such a high number of autistic children come from immigrant families, a phenomenon seen in major cities across North America."
# This information MIGHT also help explain why autism numbers in California (and Minnesota, for that matter), are still high. In California, between 2003 and 2007, the rate of autism among black and white children enrolled in the state's DDS program increased by 50%. But the rate among Asian children in the same period went up by 79%, and the rate among Hispanic kids increased by 84.2%. The growth rate was about 58% higher among Asian and Hispanic children than black and white children.
# One in four California residents are foreign born. The majority are from Mexico, Central America, China, Korea, the Philippines and other countries with high vaccination rates (Mexico's is about 92%) and that still use the full amount of thimerosal in shots. Many if not most of these children are routinely revaccinated upon entry into the United States.
It would be very interesting, I believe, to look at autism rates in high and low immigration states. Not to implicate vaccines, but to find out if children of immigrants are more at risk than our native born population -- and why.
The article reports that an unusually large proportion of Somali-speaking children in Minnesota have autism, something that has also been noted in Sweden, where Somali immigrants call autism "the Swedish Disease," because they did not see it back in East Africa.
According to the report, almost 6 percent of the Minneapolis school district's total enrollment is made up of Somali-speaking students. But in the city's early childhood and kindergarten programs, "more than 12 percent of the students with autism reported speaking Somali at home," and over "17 percent of students in the district's early childhood special education autism program are Somali speaking," the article said.
Somali kids with autism seem to be doing worse, on average, than their school mates: "About a quarter of all autism children who attend autism classrooms for students functioning too low to be mainstreamed in regular schoolrooms are Somali."
The statewide autism rate in Minnesota is already quite high -- at 100 per 10,000 children, as compared to the national average estimate of 67 per 10,000. In the Somali immigrant community, however, it could be much higher than either of those figures.
Why would that be? There is almost certainly a strong genetic connection at play here, but there may be other factors as well, including a lack of vitamin D from sunlight, (see the Swedish study in article) or, yes, vaccinations.
I do not know if vaccines are playing a role at all here. In fact, this report says that the Somali children were all born and vaccinated in the United States (though it seems to me that some must have immigrated here).
The "American Disease" idea comes from Somali parents themselves, and from some of the experts who work with them.
Anne Harrington, an early childhood special education coordinator for the Minneapolis school district and a specialist on the topic, told Gorman that Somalis "Are given more [vaccines] than we get, and sometimes they're doubled up. Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then suddenly they're getting just a wallop of them in the moms and then in the babies. That's certainly a concern that's been expressed to me by the Somali population."
I have never heard that before, and there may be nothing to it. On the other hand, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices recommends that refugee adults receive at least 10 vaccines -- including pregnant women. Some of them contain thimerosal.
In addition, any of these kids who are older than five -- meaning they were born in 2002 or earlier -- could have received thimerosal in their vaccines.
Whatever the reason for the apparent higher rates of autism (ie, genes, sunlight, vitamins, vaccines, all of the above, none of the above) it is an interesting phenomenon and, it seems to me, an intriguing avenue of research.
There are data out there to suggest that elevated autism rates may not be limited strictly to immigrants from Somalia:
# A study of pervasive developmental disorder (a form of ASD) prevalence in Montreal school districts in 2003-2004 showed that the average PDD rate in the city's five predominantly French-speaking school districts (ie, largely Canadian-born) was 42.3 per 10,000 students, but in the largely English-speaking school district, where many immigrant children live, the rate was 69.2 per 10,000.
# In the English-speaking district, although the overall PDD rate was 69.2 per 10,000, among foreign-born children it was 106.6 per 10,000, and among Canadian-born children it was 67.6 per 10,000 - or 58% higher in the foreign born population.
# In Sweden, researchers reported that the incidence of autism among Somali immigrant children is far higher than among children living in Somalia (though better medical care and diagnostics would play a role, I'd think). Swedish media report that Somalis living in Sweden have dubbed autism, "The Swedish disease," because it is so common among Somali immigrants.
# These data might support reports that autism rates are also higher in immigrant communities in North America. On June 6, 2007, the Canadian Broadcasting News reported that, "autism rates are higher in immigrant families." Health-care specialists in Montreal, it said, were, "trying to understand why such a high number of autistic children come from immigrant families, a phenomenon seen in major cities across North America."
# This information MIGHT also help explain why autism numbers in California (and Minnesota, for that matter), are still high. In California, between 2003 and 2007, the rate of autism among black and white children enrolled in the state's DDS program increased by 50%. But the rate among Asian children in the same period went up by 79%, and the rate among Hispanic kids increased by 84.2%. The growth rate was about 58% higher among Asian and Hispanic children than black and white children.
# One in four California residents are foreign born. The majority are from Mexico, Central America, China, Korea, the Philippines and other countries with high vaccination rates (Mexico's is about 92%) and that still use the full amount of thimerosal in shots. Many if not most of these children are routinely revaccinated upon entry into the United States.
It would be very interesting, I believe, to look at autism rates in high and low immigration states. Not to implicate vaccines, but to find out if children of immigrants are more at risk than our native born population -- and why.
Radio jock’s words about autism send local man flying
As soon as Wayne and Shea Adair learned about the words spoken by radio “shock jock” Mike Savage about autism on July 16, the couple knew they too needed to take to the air.
The Adairs are parents to six chidren, including a 4-year-old son with autism. Wayne, who is a full-time dad and part-time pilot running a small business flying advertising banners over Reno, and Shea, a nurse at Renown Medical Center, were angry when they read the transcript of Savage’s comments in an e-mail from the Reno Autism Information Network.
“As soon as I read my e-mail at work I called (Wayne) and said, ‘OK, we have a banner to fly,’ ” Shea said.
In his broadcast, Savage called autistic children “brats” and that the condition is the “illness du jour.” He said autism is the result of bad parenting.
So, Wayne put together a few choice words of his own that he pulled behind his plane across the sky above Reno and Sparks on Wednesday.
“My son has autism. Mike Savage is an idiot.”
“Guys like Mike need to use their mouthpiece for positive change,” Wayne said outside the hangar where he keeps his plane at the Reno-Stead Airport. “But he’s using it for propaganda. He’s trying to shock people and he did.”
"This shock jock guy can reach 8.2 million people across the nation,” Shea said. “We can reach at least a few thousand.”
Wayne said Savage’s “ignorant comments” have resulted in a positive backlash. The National Autism Association demanded an apology and some groups called for Savage to be fired.
“Autism is a very serious condition that greatly impacts the lives of those affected,” said NAA board member Lori McIlwain in a written statement online at www.nationalautismassociation.org. “Many children with autism experience tremendous physical pain from underlying pathologies, which accounts for the screaming this person callously dismisses. To have an uneducated opinion about autism is perfectly within one’s right, but to earn a living by shock-value exploitation of children’s suffering, while suggesting they should be called ‘idiots,’ is disgraceful.”
On his own Web site, http://michaelsavage.wnd.com/, Savage posted comments in his own defense: “My comments about autism were meant to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as ‘autistic.’ ... Just as some drug companies have overdiagnosed ‘ADD’ and ‘ADHD’ to peddle dangerous speed-like drugs to children as young as 4 years of age, this cartel of doctors and drug companies is now creating a national panic by overdiagnosing autism, for which there is no definitive medical diagnosis!”
Wayne said that if there seem to be more cases of autism it is because other mental illnesses are finally being properly put in the category. He also said that in order to be diagnosed as autistic, a neurologist and a behavioral psychologist both must agree on the diagnosis. According to the NAA, there are five disorders under the Pervasive Development Disorder umbrella, which include Autism, Aspergers, Rhett’s Syndrome, Childhood Disintegrative Disorder, and PDD-NOS (not otherwise specified).
Wayne described his own son’s condition as “not high-functioning, and not severe.” He said that when he saw at a conference in Seattle what other parents of autistic children deal with it made his own son, Wayne, Jr., “look like a cakewalk.”
He pointed to his own family as proof that Savage’s comments about autism being the result of bad parenting are false.
“If I was a lousy parent, (all of my six children) would be messed up,” he said.
The Adairs are parents to six chidren, including a 4-year-old son with autism. Wayne, who is a full-time dad and part-time pilot running a small business flying advertising banners over Reno, and Shea, a nurse at Renown Medical Center, were angry when they read the transcript of Savage’s comments in an e-mail from the Reno Autism Information Network.
“As soon as I read my e-mail at work I called (Wayne) and said, ‘OK, we have a banner to fly,’ ” Shea said.
In his broadcast, Savage called autistic children “brats” and that the condition is the “illness du jour.” He said autism is the result of bad parenting.
So, Wayne put together a few choice words of his own that he pulled behind his plane across the sky above Reno and Sparks on Wednesday.
“My son has autism. Mike Savage is an idiot.”
“Guys like Mike need to use their mouthpiece for positive change,” Wayne said outside the hangar where he keeps his plane at the Reno-Stead Airport. “But he’s using it for propaganda. He’s trying to shock people and he did.”
"This shock jock guy can reach 8.2 million people across the nation,” Shea said. “We can reach at least a few thousand.”
Wayne said Savage’s “ignorant comments” have resulted in a positive backlash. The National Autism Association demanded an apology and some groups called for Savage to be fired.
“Autism is a very serious condition that greatly impacts the lives of those affected,” said NAA board member Lori McIlwain in a written statement online at www.nationalautismassociation.org. “Many children with autism experience tremendous physical pain from underlying pathologies, which accounts for the screaming this person callously dismisses. To have an uneducated opinion about autism is perfectly within one’s right, but to earn a living by shock-value exploitation of children’s suffering, while suggesting they should be called ‘idiots,’ is disgraceful.”
On his own Web site, http://michaelsavage.wnd.com/, Savage posted comments in his own defense: “My comments about autism were meant to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as ‘autistic.’ ... Just as some drug companies have overdiagnosed ‘ADD’ and ‘ADHD’ to peddle dangerous speed-like drugs to children as young as 4 years of age, this cartel of doctors and drug companies is now creating a national panic by overdiagnosing autism, for which there is no definitive medical diagnosis!”
Wayne said that if there seem to be more cases of autism it is because other mental illnesses are finally being properly put in the category. He also said that in order to be diagnosed as autistic, a neurologist and a behavioral psychologist both must agree on the diagnosis. According to the NAA, there are five disorders under the Pervasive Development Disorder umbrella, which include Autism, Aspergers, Rhett’s Syndrome, Childhood Disintegrative Disorder, and PDD-NOS (not otherwise specified).
Wayne described his own son’s condition as “not high-functioning, and not severe.” He said that when he saw at a conference in Seattle what other parents of autistic children deal with it made his own son, Wayne, Jr., “look like a cakewalk.”
He pointed to his own family as proof that Savage’s comments about autism being the result of bad parenting are false.
“If I was a lousy parent, (all of my six children) would be messed up,” he said.
Saturday, July 26, 2008
Autism Rates Soaring For Somalis In U.S.
MINNEAPOLIS, Minn. (CBS) ― Their colorful shops line the streets, catering to their own culture and drawing in ours. Beginning in 1993, Somali people began arriving in Minnesota from refugee camps in Kenya. By that time, Somalia's political chaos had led to the killing or starvation of many of its people.
For refugees, Minneapolis offered a place to start a new life, a new business, or a new family.
"Many things attracted Somalis to Minnesota to stay. Good health cover and good education," said Huda Farah.
Farah works on refugee resettlement with the Minnesota Department of Health. It's through her work that she's noticed something troubling within her community.
"We're seeing (an) increased number in autism," she said.
Reporter Amelia Santaniello asked her, "Is there autism in Somalia?"
"Not many, not many," replied Farah.
The Minneapolis School District is seeing a higher than expected rate of autism in its early childhood special education classrooms too.
"It's so glaring here in Minneapolis, I couldn't not see it," said Anne Harrington.
Harrington has been identifying kids on the autism spectrum for Minneapolis Schools for over 20 years.
"We have seen a tremendous number of children that are Somali, but born here in the United States or in Minneapolis who have autism," she said.
Out of 100 children in the Minneapolis Schools early childhood special education classroom program for autism, 25 percent of them are Somali. The district as a whole has only about 6 percent of students who speak or hear Somali language at home.
"They are showing the more severe forms of autism, not the broad spectrum of autism that we see in our general population," said Harrington.
Shaimake Osman is one of these kids.
"I knew it (was) something wrong, but I didn't know (what) was wrong. I never heard anything about 'autistic' or 'autism,'" said his mother, Farah Osman.
Osman said when he was 18 months old, he would bang his head all the time. He wouldn't sleep. He couldn't talk.
"They tested for school first. In school. Then after that, they said he has autism. And I never heard, what does that mean, 'autism'? What kind of sickness?" said Osman, describing when she first received her son's diagnosis.
Perhaps the most troubling is that all of the Somali children the Minneapolis Schools have identified with autism were born here in Minneapolis, like Shaimake. The district doesn't have a single child born in Somalia who immigrated here receiving special education services for the disorder.
"I believe (it) is vaccination," said Osman when asked what she thinks is the reason for her son's autism.
"In rural Somalia, there's no immunizations," said Farah.
She said parents like Osman in the Somali community all have questions about immunizations. She said they worry not only about the vaccinations their kids receive, but about the immunizations they themselves received before entering the U.S.
"When Somali parents come from the refugee camps, some of them get immunizations within those camps regardless of whether it's in Ethiopia or Kenya or other countries," said Farah.
She added that because of poor recordkeeping in those camps, some Somalis receive the same vaccinations three and four times.
"That's very worrisome. We need to find out what's going on," said Farah.
In the United States, the Centers for Disease Control said that research so far has shown no link between vaccinations and autism, but a number of studies are still underway.
Doctors in Sweden are calling for research on another possible cause of autism that could hold answers for the Somali community in Minnesota. Sweden has a high incidence rate of autism in its Somali children as well.
Doctors there are wondering if, for Somali people, a lack of sunlight in the winter, the widespread use of sunscreen, and efforts to avoid sun exposure are resulting in too little vitamin D being absorbed through their dark skin.
They theorize that a lack of vitamin D, possibly in conjunction with genetic or environmental factors, could be a cause of the disorder. They're calling for an official study.
"I think it's something that is interesting and should be pursued through research," said Judy Punyko, a maternal and child health epidemiologist for the Minnesota Department of Health. She said we're not currently set up to do that kind of research here.
"We are attempting to develop a data system that will collect data that is reliable and valid so that we can identify cases and track them over time," she said.
The Department of Health is just in the beginning stages of setting up that system, but in response to the high Somali autism rates reported in Minneapolis, the Department has formed a small study group made up of school representatives, epidemiologists and U of M medical experts to look at possible causes.
"It's very concerning. It's astounding to hear the numbers are so large," said Punyko.
For now, the questions in the subset of our community continue.
"At least every week, I hear about (a) new family that have a child with autism," said Farah. "We need to really investigate and find out what's going on."
For refugees, Minneapolis offered a place to start a new life, a new business, or a new family.
"Many things attracted Somalis to Minnesota to stay. Good health cover and good education," said Huda Farah.
Farah works on refugee resettlement with the Minnesota Department of Health. It's through her work that she's noticed something troubling within her community.
"We're seeing (an) increased number in autism," she said.
Reporter Amelia Santaniello asked her, "Is there autism in Somalia?"
"Not many, not many," replied Farah.
The Minneapolis School District is seeing a higher than expected rate of autism in its early childhood special education classrooms too.
"It's so glaring here in Minneapolis, I couldn't not see it," said Anne Harrington.
Harrington has been identifying kids on the autism spectrum for Minneapolis Schools for over 20 years.
"We have seen a tremendous number of children that are Somali, but born here in the United States or in Minneapolis who have autism," she said.
Out of 100 children in the Minneapolis Schools early childhood special education classroom program for autism, 25 percent of them are Somali. The district as a whole has only about 6 percent of students who speak or hear Somali language at home.
"They are showing the more severe forms of autism, not the broad spectrum of autism that we see in our general population," said Harrington.
Shaimake Osman is one of these kids.
"I knew it (was) something wrong, but I didn't know (what) was wrong. I never heard anything about 'autistic' or 'autism,'" said his mother, Farah Osman.
Osman said when he was 18 months old, he would bang his head all the time. He wouldn't sleep. He couldn't talk.
"They tested for school first. In school. Then after that, they said he has autism. And I never heard, what does that mean, 'autism'? What kind of sickness?" said Osman, describing when she first received her son's diagnosis.
Perhaps the most troubling is that all of the Somali children the Minneapolis Schools have identified with autism were born here in Minneapolis, like Shaimake. The district doesn't have a single child born in Somalia who immigrated here receiving special education services for the disorder.
"I believe (it) is vaccination," said Osman when asked what she thinks is the reason for her son's autism.
"In rural Somalia, there's no immunizations," said Farah.
She said parents like Osman in the Somali community all have questions about immunizations. She said they worry not only about the vaccinations their kids receive, but about the immunizations they themselves received before entering the U.S.
"When Somali parents come from the refugee camps, some of them get immunizations within those camps regardless of whether it's in Ethiopia or Kenya or other countries," said Farah.
She added that because of poor recordkeeping in those camps, some Somalis receive the same vaccinations three and four times.
"That's very worrisome. We need to find out what's going on," said Farah.
In the United States, the Centers for Disease Control said that research so far has shown no link between vaccinations and autism, but a number of studies are still underway.
Doctors in Sweden are calling for research on another possible cause of autism that could hold answers for the Somali community in Minnesota. Sweden has a high incidence rate of autism in its Somali children as well.
Doctors there are wondering if, for Somali people, a lack of sunlight in the winter, the widespread use of sunscreen, and efforts to avoid sun exposure are resulting in too little vitamin D being absorbed through their dark skin.
They theorize that a lack of vitamin D, possibly in conjunction with genetic or environmental factors, could be a cause of the disorder. They're calling for an official study.
"I think it's something that is interesting and should be pursued through research," said Judy Punyko, a maternal and child health epidemiologist for the Minnesota Department of Health. She said we're not currently set up to do that kind of research here.
"We are attempting to develop a data system that will collect data that is reliable and valid so that we can identify cases and track them over time," she said.
The Department of Health is just in the beginning stages of setting up that system, but in response to the high Somali autism rates reported in Minneapolis, the Department has formed a small study group made up of school representatives, epidemiologists and U of M medical experts to look at possible causes.
"It's very concerning. It's astounding to hear the numbers are so large," said Punyko.
For now, the questions in the subset of our community continue.
"At least every week, I hear about (a) new family that have a child with autism," said Farah. "We need to really investigate and find out what's going on."
Researchers look for autism links
By Laura McFarland
Rocky Mount Telegram
Kristina Day's gut tells her that her youngest son does not have autism.
In his short, 6-month life, William Day has not shown any of the symptoms, but she is not willing to rule it out. She said she was burned too badly before her oldest son, Matthew, 4, was diagnosed with the disorder.
"If (William) does have autism, it is high-functioning. I haven't seen the sensory issues, and I haven't seen the developmental delays ... but I don't know right now," said Day of Durham.
It wasn't the fear of having another autistic child that convinced Day to have William participate in a study about infants at risk for the disorder. Her motivation was more about helping doctors learn everything they can about autism.
William is one of a handful of babies already participating in a study to look at their brain development and behavior, said Dr. Heather Cody Hazlett, a co-investigator of the study and an assistant professor of psychiatry at the University of North Carolina-Chapel Hill. He and the other infants involved in the study have been deemed at high risk for autism because they have an older sibling who already has been diagnosed.
The national study will look at 400 infants across the nation during the next five years – 100 of them at UNC-Chapel Hill, Hazlett said. The university already has enrolled 10 children and is looking for other families who would like to participate.
"The first thing that we would hope to accomplish is to get a better understanding of what is going on in early brain development in children with autism. Ultimately, we would hope to find biological features associated with brain growth that might help us with earlier identification or diagnoses of autism," Hazlett said.
Autism is a developmental disability that usually appears during the first three years of life and affects a person's ability to communicate and interact with others, Hazlett said.
The disorder is typically characterized by the presence of repetitive behaviors or restricted interests. It is a lifelong condition with no cure and no single known cause.
The study looks at the infants at their 6-, 12- and 24-month-old marks, Hazlett said. If a child misses the 6-month tests, the study is enrolling some for the next stage.
Participating in the study means bringing the infant to UNC-Chapel Hill for developmental and behavioral testing and an MRI that is done while the child is sleeping, Hazlett said.
There is no sedation. The tests are repeated at all three age marks.
"It is the only study that I am aware of that is trying to take such a comprehensive look at very early brain development in autism. Because we don't know the cause of autism, we are looking for ways to better identify children who may develop autism early so that we can start intervention as early as possible," Hazlett said.
Day would have appreciated the benefit of early detection. She was suspecting something was wrong with Matthew when he was 5 months old.
He was diagnosed with a sensory-based feeding disorder and a sensory integration dysfunction at 13 months. At 18 months, doctors suspected autism, but they wouldn't confirm it until he turned 2, despite a growing list of signs.
"He can't tolerate certain textures, certain smells. He used to not be able to tolerate certain colors of food. He still eats a 50 percent puree diet. He cannot chew some hard food, and he can't actively swallow because of the way it feels in his mouth," Day said.
Day believes autism is a biological condition children are born with, not something they contract from a vaccine. That is part of what she hopes the study will help prove.
People who participate in the study are reimbursed for travel and lodging during the three visits, Hazlett said. There is also a small compensation for participating.
The study will be enrolling infants with older siblings with autism for at least a few more years, Hazlett said.
Rocky Mount Telegram
Kristina Day's gut tells her that her youngest son does not have autism.
In his short, 6-month life, William Day has not shown any of the symptoms, but she is not willing to rule it out. She said she was burned too badly before her oldest son, Matthew, 4, was diagnosed with the disorder.
"If (William) does have autism, it is high-functioning. I haven't seen the sensory issues, and I haven't seen the developmental delays ... but I don't know right now," said Day of Durham.
It wasn't the fear of having another autistic child that convinced Day to have William participate in a study about infants at risk for the disorder. Her motivation was more about helping doctors learn everything they can about autism.
William is one of a handful of babies already participating in a study to look at their brain development and behavior, said Dr. Heather Cody Hazlett, a co-investigator of the study and an assistant professor of psychiatry at the University of North Carolina-Chapel Hill. He and the other infants involved in the study have been deemed at high risk for autism because they have an older sibling who already has been diagnosed.
The national study will look at 400 infants across the nation during the next five years – 100 of them at UNC-Chapel Hill, Hazlett said. The university already has enrolled 10 children and is looking for other families who would like to participate.
"The first thing that we would hope to accomplish is to get a better understanding of what is going on in early brain development in children with autism. Ultimately, we would hope to find biological features associated with brain growth that might help us with earlier identification or diagnoses of autism," Hazlett said.
Autism is a developmental disability that usually appears during the first three years of life and affects a person's ability to communicate and interact with others, Hazlett said.
The disorder is typically characterized by the presence of repetitive behaviors or restricted interests. It is a lifelong condition with no cure and no single known cause.
The study looks at the infants at their 6-, 12- and 24-month-old marks, Hazlett said. If a child misses the 6-month tests, the study is enrolling some for the next stage.
Participating in the study means bringing the infant to UNC-Chapel Hill for developmental and behavioral testing and an MRI that is done while the child is sleeping, Hazlett said.
There is no sedation. The tests are repeated at all three age marks.
"It is the only study that I am aware of that is trying to take such a comprehensive look at very early brain development in autism. Because we don't know the cause of autism, we are looking for ways to better identify children who may develop autism early so that we can start intervention as early as possible," Hazlett said.
Day would have appreciated the benefit of early detection. She was suspecting something was wrong with Matthew when he was 5 months old.
He was diagnosed with a sensory-based feeding disorder and a sensory integration dysfunction at 13 months. At 18 months, doctors suspected autism, but they wouldn't confirm it until he turned 2, despite a growing list of signs.
"He can't tolerate certain textures, certain smells. He used to not be able to tolerate certain colors of food. He still eats a 50 percent puree diet. He cannot chew some hard food, and he can't actively swallow because of the way it feels in his mouth," Day said.
Day believes autism is a biological condition children are born with, not something they contract from a vaccine. That is part of what she hopes the study will help prove.
People who participate in the study are reimbursed for travel and lodging during the three visits, Hazlett said. There is also a small compensation for participating.
The study will be enrolling infants with older siblings with autism for at least a few more years, Hazlett said.
Autism May Be More Genes Than Environment, Studies Say
Three Separate Studies Point to Abnormal Gene as Cause of Autism
By AUDREY GRAYSON
ABC News Medical Unit
When Ann Hotez's third child Rachel was diagnosed with autism at the age of 2, the mother's first reaction was to believe something she had done while pregnant had brought about the condition.
"I was blaming myself terribly, like it was something I did wrong during my pregnancy," Hotez said.
She began racking her brain for a possible explanation for possible causes of the condition. This was 1994 and comparatively little information was available about autism. Many doctors still believed the disorder was caused by environmental factors.
Hotez, desperate to find a reason for her daughter's disorder, landed upon the fish industry.
"For a while I was furious at all the fish companies for letting me eat tuna fish while I was pregnant with Rachel," she explained.
But as more research became available on the genetics of autism, Hotez reconciled her pain with the understanding that the disorder doesn't have one simple external cause. Indeed, for years now, scientists have suspected that autism is a complex genetic disorder, the development of which depends on a constellation of genes working together rather than the work of one single gene.
Now, three different laboratories across the country have identified the same gene abnormality as a possible cause of autism — adding to the growing body of evidence that the disorder is primarily genetic.
The gene — known to scientists as contactin-associated proteinlike 2 (CNTNAP2) — has been a prime autism suspect among scientists. The gene is a blueprint of sorts for an important protein involved in the ability of brain cells to communicate with each other properly.
Today, a group of studies published in the American Journal of Human Genetics not only confirmed the link between this gene and autism, but they begin to identify the specific role this gene plays in the development of the disorder.
Three Studies, Similar Findings
While each of the studies found that this genetic variant increases the risk of developing autism, one of them also revealed that the gene variation is especially risky when inherited from mothers rather than fathers.
In the first part of the study, researchers analyzed data from 145 children with autism whose families had two or more children with the condition. They found by chance that the subjects had a higher rate of the abnormal gene.
To validate these findings, researchers studied a separate group of participants, which included 1,295 autistic children and their healthy parents. They found again that the subjects had higher rates of the variant gene than would have occurred by chance.
When researchers combined the data from the two studies, they found that children with autism were about 20 percent more likely to have inherited this genetic variant from their mothers than from their fathers.
According to Aravinda Chakravarti, primary investigator and a professor at Johns Hopkins School of Medicine, this research may take us one step closer to a better understanding of the genetic causes of autism and how large a role environmental factors truly play in the development in the disorder.
"Environmental factors might be important, but we don't know which or how much they affect the development of this disorder," Chakravarti said. "But I'm very confident that this is a first step in a series of steps we need to take to study autism with some measure of comprehensiveness before we can estimate the totality of meaning for the role of environmental factors."
In another lab across the country, researchers at UCLA landed upon the same gene — CNTNAP2 — as a possible candidate for autism. But the UCLA researchers identified the specific role this gene might play in affecting language, thought and behavior for people with autism.
Taking a different approach, these investigators used data from the Autism Genetic Resource Exchange and studied the DNA of 291 families nationwide who had at least one autistic child. They also found that an unusually high number of the autistic subjects had this gene variant.
To verify their findings, researchers studied the DNA of a new group of 304 families and found that the CNTNAP2 gene variant showed up consistently in the autistic subjects.
Moreover, researchers took a closer look at the gene to see how it might bring about autism. Daniel Geschwind, principal study investigator and director of the UCLA Center for Autism Research, said they discovered that in young children, the gene was most active in language and thought.
"We found that the longer the language delay an autistic child had, the more likely they were to have the CNTNAP2 variant," Geschwind explained. "So having this variant at least partially explains amount of language delay in autism."
A third study released in the same journal identified specific mutations on the same gene, which were individually rare for each autistic patient. Researchers at Yale University sequenced the entire gene and found that autistic patients often had unique mutations on the gene, which were not found in any members of the healthy control group.
This finding exemplifies the complexity of the findings on this gene as well as the disorder itself, said Dr. Matthew State, principal investigator of the study and director of the Program on Neurogenetics at Yale University. He noted that even though his team took a different approach to unlocking the possible genetic causes of autism than the other two teams, "we still landed on the same gene which is quite interesting, but more work needs to be done to sort out what's going on here."
Could Genes Trump Environmental Factors?
Many experts support Chakravarti's belief that this research adds to the evidence that genetic factors play more of a role in the development of autism than environmental factors.
"Environmental factors in autism is a separate issue," said Carla Mazefsky, assistant professor of pediatrics and psychiatry at the University of Pittsburgh School of Medicine. "Given autism's strong genetic basis, identification of genes that play a role is of critical importance. This study further emphasizes the complexity of the genetics underlying autism."
"Autism is a disorder of fetal or early postnatal brain development with a genetic origin," agreed Vittorio Gallo, director of the Center for Neuroscience Research at the Children's National Medical Center in Washington, D.C.
Margit Burmeister, associate director of the Molecular and Behavioral Neuroscience Institute at the University of Michigan, said that "this study adds to the evidence that genetic factors play a role and adds strong results to the idea that cell adhesion in the brain plays a role in autism." However, she said she believes that environmental factors still play a role in the development of the disorder.
"This is similar to risk for diabetes, which is very strongly affected by exercise, weight and sugar consumption, but some people can be coach potatoes and eat what they want and don't get sick. Those with a more resilient genetic predisposition for autism may get the same environmental factors without ill effect," Burmeister explained.
But the findings that suggest genetics may play a stronger role than environmental factors may be a small measure of comfort for parents like Hotez, who may have blamed themselves for their child's condition.
"In my heart now I know it's a genetic disorder," she said. "I don't think it's caused by any of the environmental [factors] they talk about in the news."
By AUDREY GRAYSON
ABC News Medical Unit
When Ann Hotez's third child Rachel was diagnosed with autism at the age of 2, the mother's first reaction was to believe something she had done while pregnant had brought about the condition.
"I was blaming myself terribly, like it was something I did wrong during my pregnancy," Hotez said.
She began racking her brain for a possible explanation for possible causes of the condition. This was 1994 and comparatively little information was available about autism. Many doctors still believed the disorder was caused by environmental factors.
Hotez, desperate to find a reason for her daughter's disorder, landed upon the fish industry.
"For a while I was furious at all the fish companies for letting me eat tuna fish while I was pregnant with Rachel," she explained.
But as more research became available on the genetics of autism, Hotez reconciled her pain with the understanding that the disorder doesn't have one simple external cause. Indeed, for years now, scientists have suspected that autism is a complex genetic disorder, the development of which depends on a constellation of genes working together rather than the work of one single gene.
Now, three different laboratories across the country have identified the same gene abnormality as a possible cause of autism — adding to the growing body of evidence that the disorder is primarily genetic.
The gene — known to scientists as contactin-associated proteinlike 2 (CNTNAP2) — has been a prime autism suspect among scientists. The gene is a blueprint of sorts for an important protein involved in the ability of brain cells to communicate with each other properly.
Today, a group of studies published in the American Journal of Human Genetics not only confirmed the link between this gene and autism, but they begin to identify the specific role this gene plays in the development of the disorder.
Three Studies, Similar Findings
While each of the studies found that this genetic variant increases the risk of developing autism, one of them also revealed that the gene variation is especially risky when inherited from mothers rather than fathers.
In the first part of the study, researchers analyzed data from 145 children with autism whose families had two or more children with the condition. They found by chance that the subjects had a higher rate of the abnormal gene.
To validate these findings, researchers studied a separate group of participants, which included 1,295 autistic children and their healthy parents. They found again that the subjects had higher rates of the variant gene than would have occurred by chance.
When researchers combined the data from the two studies, they found that children with autism were about 20 percent more likely to have inherited this genetic variant from their mothers than from their fathers.
According to Aravinda Chakravarti, primary investigator and a professor at Johns Hopkins School of Medicine, this research may take us one step closer to a better understanding of the genetic causes of autism and how large a role environmental factors truly play in the development in the disorder.
"Environmental factors might be important, but we don't know which or how much they affect the development of this disorder," Chakravarti said. "But I'm very confident that this is a first step in a series of steps we need to take to study autism with some measure of comprehensiveness before we can estimate the totality of meaning for the role of environmental factors."
In another lab across the country, researchers at UCLA landed upon the same gene — CNTNAP2 — as a possible candidate for autism. But the UCLA researchers identified the specific role this gene might play in affecting language, thought and behavior for people with autism.
Taking a different approach, these investigators used data from the Autism Genetic Resource Exchange and studied the DNA of 291 families nationwide who had at least one autistic child. They also found that an unusually high number of the autistic subjects had this gene variant.
To verify their findings, researchers studied the DNA of a new group of 304 families and found that the CNTNAP2 gene variant showed up consistently in the autistic subjects.
Moreover, researchers took a closer look at the gene to see how it might bring about autism. Daniel Geschwind, principal study investigator and director of the UCLA Center for Autism Research, said they discovered that in young children, the gene was most active in language and thought.
"We found that the longer the language delay an autistic child had, the more likely they were to have the CNTNAP2 variant," Geschwind explained. "So having this variant at least partially explains amount of language delay in autism."
A third study released in the same journal identified specific mutations on the same gene, which were individually rare for each autistic patient. Researchers at Yale University sequenced the entire gene and found that autistic patients often had unique mutations on the gene, which were not found in any members of the healthy control group.
This finding exemplifies the complexity of the findings on this gene as well as the disorder itself, said Dr. Matthew State, principal investigator of the study and director of the Program on Neurogenetics at Yale University. He noted that even though his team took a different approach to unlocking the possible genetic causes of autism than the other two teams, "we still landed on the same gene which is quite interesting, but more work needs to be done to sort out what's going on here."
Could Genes Trump Environmental Factors?
Many experts support Chakravarti's belief that this research adds to the evidence that genetic factors play more of a role in the development of autism than environmental factors.
"Environmental factors in autism is a separate issue," said Carla Mazefsky, assistant professor of pediatrics and psychiatry at the University of Pittsburgh School of Medicine. "Given autism's strong genetic basis, identification of genes that play a role is of critical importance. This study further emphasizes the complexity of the genetics underlying autism."
"Autism is a disorder of fetal or early postnatal brain development with a genetic origin," agreed Vittorio Gallo, director of the Center for Neuroscience Research at the Children's National Medical Center in Washington, D.C.
Margit Burmeister, associate director of the Molecular and Behavioral Neuroscience Institute at the University of Michigan, said that "this study adds to the evidence that genetic factors play a role and adds strong results to the idea that cell adhesion in the brain plays a role in autism." However, she said she believes that environmental factors still play a role in the development of the disorder.
"This is similar to risk for diabetes, which is very strongly affected by exercise, weight and sugar consumption, but some people can be coach potatoes and eat what they want and don't get sick. Those with a more resilient genetic predisposition for autism may get the same environmental factors without ill effect," Burmeister explained.
But the findings that suggest genetics may play a stronger role than environmental factors may be a small measure of comfort for parents like Hotez, who may have blamed themselves for their child's condition.
"In my heart now I know it's a genetic disorder," she said. "I don't think it's caused by any of the environmental [factors] they talk about in the news."
Savage's Comments Infuriate Autism Community
Autism Researchers, Groups Find Common Ground in Condemning Radio Jock
By DAN CHILDS
ABC News Medical Unit
As autism organizations and medical professionals alike voice their outrage at inflammatory comments made by controversial talk radio host Michael Savage, about most autistic children simply being "brats," the head of the network that employs him appears to be taking measures to pull out of a public relations tailspin.
Savage, who in the past, has taken aim at the legitimacy of attention deficit hyperactivity disorder (ADHD) and other behavioral disorders, called autism a "fraud" and a "racket" during his July 16 broadcast, adding that "[i]n 99 percent of the cases, it's a brat who hasn't been told to cut the act out."
In light of strong public reaction to his statements, Savage issued a statement, further explaining his comments.
"My comments about autism were meant to boldly awaken parents and children to the medical community's attempt to label too many children or adults as 'autistic'," the statement read.
"Just as some drug companies have overdiagnosed 'ADD' and 'ADHD' to peddle dangerous speed-like drugs to children as young as 4 years of age, this cartel of doctors and drug companies is now creating a national panic by overdiagnosing 'autism,' for which there is no definitive medical diagnosis!"
In a response to ABC News' request for comment, Mark Masters, the CEO of Talk Radio Network, sent the same statement that had been posted on Savage's Web site.
The statement has done little to blunt reactions to his strong comments, which have forged an unlikely alliance between a number of autism groups that claim doctors are overlooking the true causes of the disorder, and autism researchers in the mainstream medical community.
"I would say it is the lowest form of attention-seeking, and the best response is silence," said Dr. Nancy Minshew, director of the Center for Excellence in Autism Research (CeFAR) at the University of Pittsburgh. "Tune out and his sponsors will turn him off. Declare a day of mourning for those who suffer and a day of prayer for those who care by not calling or responding."
"I think we're seeing a trend within talk radio -- anger toward people with autism," said Kim Stagliano, managing editor of the popular blog Age of Autism. "As we learn more about autism, there seems to be an acceptable level of tolerance within society, but within talk radio, the sympathy has turned into scorn."
And Rebecca Estepp, national manager of the autism advocacy group Talk About Curing Autism (TACA) says Masters has e-mailed her organization and invited them, along with the National Autism Association, to be guests on Savage's show to "make amends with the autism community."
But it is unclear whether the autism community is ready to bury the hatchet.
"Michael Savage is spectacularly uninformed about this major national health crisis," Estepp said. "His comments were beyond insulting and are tantamount to blaming parents for their child's cancer.
"Perhaps 99 percent of his listeners should stop tuning in."
Groups Differ on Appropriate Response
Autism experts say Savage's statements threaten to alter the public's understanding of the disorder.
"It is unfortunate that, just as the public is beginning to be better informed about autism and related disorders, a prominent individual in the media with a wide audience should spread misinformation," said Katherine Loveland, professor of psychiatry and behavioral sciences and pediatrics at the University of Texas Medical School in Houston. "Although it's his right to believe and to say what he wishes, his statements should not go un-challenged by the medical, scientific and advocacy communities."
But, while those in the autism community overwhelmingly disagree with Savage's viewpoint, there is as yet no consensus as to what action, if any, should be taken.
Some say that ignoring the comments is the best approach.
"Mr. Savage is obviously a complete ignoramus, who knows not the first thing about autism," said Deborah Fein, autism researcher and professor of psychology at the University of Connecticut. "However, I doubt he believes what he said; he is obviously just trying to get media and public attention, which he has succeeded in doing."
"The less attention given to Mr. Savage, the better," agreed Marguerite Kirst Colston, spokeswoman for the Autism Society of America.
But, the nation's other major autism groups have suggested that a stronger response is needed. In a statement issued today, the National Autism Association said that representatives from the organization have agreed to be on a panel on Savage's show to respond.
"We've asked for an apology, a retraction, and a chance to get to our side on this issue," the statement read. "We don't want to respond with an attack, we want to educate him and his listeners."
The advocacy group Autism Speaks urged a response in the interest of further educating the public about the nature of autism.
"One important goal of increasing awareness about autism is to foster a greater level of acceptance and understanding of the very real and significant challenges it poses to individuals with the disorder and their families," read a statement issued today by Autism Speaks. "[T]here are those who are apparently incapable of feeling compassion. They deserve our pity, not our scorn."
Stagliano disagreed: "We don't need to 'pity' Mr. Savage, like Autism Speaks suggests; we need to educate him."
By DAN CHILDS
ABC News Medical Unit
As autism organizations and medical professionals alike voice their outrage at inflammatory comments made by controversial talk radio host Michael Savage, about most autistic children simply being "brats," the head of the network that employs him appears to be taking measures to pull out of a public relations tailspin.
Savage, who in the past, has taken aim at the legitimacy of attention deficit hyperactivity disorder (ADHD) and other behavioral disorders, called autism a "fraud" and a "racket" during his July 16 broadcast, adding that "[i]n 99 percent of the cases, it's a brat who hasn't been told to cut the act out."
In light of strong public reaction to his statements, Savage issued a statement, further explaining his comments.
"My comments about autism were meant to boldly awaken parents and children to the medical community's attempt to label too many children or adults as 'autistic'," the statement read.
"Just as some drug companies have overdiagnosed 'ADD' and 'ADHD' to peddle dangerous speed-like drugs to children as young as 4 years of age, this cartel of doctors and drug companies is now creating a national panic by overdiagnosing 'autism,' for which there is no definitive medical diagnosis!"
In a response to ABC News' request for comment, Mark Masters, the CEO of Talk Radio Network, sent the same statement that had been posted on Savage's Web site.
The statement has done little to blunt reactions to his strong comments, which have forged an unlikely alliance between a number of autism groups that claim doctors are overlooking the true causes of the disorder, and autism researchers in the mainstream medical community.
"I would say it is the lowest form of attention-seeking, and the best response is silence," said Dr. Nancy Minshew, director of the Center for Excellence in Autism Research (CeFAR) at the University of Pittsburgh. "Tune out and his sponsors will turn him off. Declare a day of mourning for those who suffer and a day of prayer for those who care by not calling or responding."
"I think we're seeing a trend within talk radio -- anger toward people with autism," said Kim Stagliano, managing editor of the popular blog Age of Autism. "As we learn more about autism, there seems to be an acceptable level of tolerance within society, but within talk radio, the sympathy has turned into scorn."
And Rebecca Estepp, national manager of the autism advocacy group Talk About Curing Autism (TACA) says Masters has e-mailed her organization and invited them, along with the National Autism Association, to be guests on Savage's show to "make amends with the autism community."
But it is unclear whether the autism community is ready to bury the hatchet.
"Michael Savage is spectacularly uninformed about this major national health crisis," Estepp said. "His comments were beyond insulting and are tantamount to blaming parents for their child's cancer.
"Perhaps 99 percent of his listeners should stop tuning in."
Groups Differ on Appropriate Response
Autism experts say Savage's statements threaten to alter the public's understanding of the disorder.
"It is unfortunate that, just as the public is beginning to be better informed about autism and related disorders, a prominent individual in the media with a wide audience should spread misinformation," said Katherine Loveland, professor of psychiatry and behavioral sciences and pediatrics at the University of Texas Medical School in Houston. "Although it's his right to believe and to say what he wishes, his statements should not go un-challenged by the medical, scientific and advocacy communities."
But, while those in the autism community overwhelmingly disagree with Savage's viewpoint, there is as yet no consensus as to what action, if any, should be taken.
Some say that ignoring the comments is the best approach.
"Mr. Savage is obviously a complete ignoramus, who knows not the first thing about autism," said Deborah Fein, autism researcher and professor of psychology at the University of Connecticut. "However, I doubt he believes what he said; he is obviously just trying to get media and public attention, which he has succeeded in doing."
"The less attention given to Mr. Savage, the better," agreed Marguerite Kirst Colston, spokeswoman for the Autism Society of America.
But, the nation's other major autism groups have suggested that a stronger response is needed. In a statement issued today, the National Autism Association said that representatives from the organization have agreed to be on a panel on Savage's show to respond.
"We've asked for an apology, a retraction, and a chance to get to our side on this issue," the statement read. "We don't want to respond with an attack, we want to educate him and his listeners."
The advocacy group Autism Speaks urged a response in the interest of further educating the public about the nature of autism.
"One important goal of increasing awareness about autism is to foster a greater level of acceptance and understanding of the very real and significant challenges it poses to individuals with the disorder and their families," read a statement issued today by Autism Speaks. "[T]here are those who are apparently incapable of feeling compassion. They deserve our pity, not our scorn."
Stagliano disagreed: "We don't need to 'pity' Mr. Savage, like Autism Speaks suggests; we need to educate him."
Sunday, June 15, 2008
Looking Inside Kids' Minds Can Open the Future
Doctor Uses Brain Imaging to Diagnose and Treat Kids' Cognitive Disorders
By CLAIRE SHIPMAN and ARIANE NALTY
May 20, 2008
Two million American children have been diagnosed with attention deficit hyperactivity disorder, according to the National Institute of Mental Health. It's so common now that one child in a classroom of 25 or 30 will have the disorder. But parents often struggle a long time to figure out exactly what's going on in their child's head. Is he tired? Is she confused? Is he just acting up? Does she need help?
Dr. Fernando Miranda, a neurologist at the Bright Minds Institute in San Francisco, says diagnosing children with behavioral disorders like ADHD and autism without looking at their brains is like trying to diagnose heart problems without actually looking at the heart. Click here to read a story about Miranda's autism research.
On the other hand, some of Miranda's patients have found they had an attention deficit problem and didn't even know it. Miranda, and many other doctors, believe more objective tools for figuring out these puzzles are critical.
From an early age, 9-year-old Danny Rodgers had trouble speaking.
Danny's words were in his head; they just couldn't seem to find a way out. Embarrassed, he avoided talking altogether and stopped trying to make friends.
Danny's grandparents, Jeanne and Howard Rodgers, who have been raising him and his sister, Meghan, since their mother died, said the school system recommended speech therapy, and patience.
"They kept saying, 'He'll grow out of it. He'll grow out of it '," said Jeanne Rodgers.
But he never did .
"He'd cry a lot and say, 'I don't' like my life. I don't like what I'm doing. I don't want to go to school,'" said Danny's grandmother.
They went to see Miranda at the Bright Minds Institute, and Miranda took a different approach to treating Danny.
Danny was wired for a qunatitative electroencephalography, or EEG, a very sophisticated test that measures a brain's electrical output in response to certain stimuli. He also underwent a comprehensive neuropsychological exam, and magnetic resonance imaging of the brain.
Those tests revealed a lot of surprises.
"This child's IQ was 138," Miranda said. "And that's huge. That's so bright."
One EEG measurement, called a P300, showed normal and abnormal electrical impulses in Danny's brain with a series of bright colors.
Reading the scan, Miranda said Danny was not "perceiving" speech in the superior temporal gyrus.
Translation: Danny has what's known as an auditory processing issue. It wasn't so much that he was having trouble speaking or pronouncing things -- his brain wasn't understanding speech correctly.
Danny's problem was not a standard speech issue at all, and his years of conventional therapy were off target.
Miranda pointed out a group of squiggly lines on the scan, showing Danny was likely to have an attention problem.
In a normal EEG, those squiggly lines would not be there in the frontal lobe section of this recording. Using those tests and other physical and behavioral information, Miranda diagnosed Danny with ADHD.
"The areas of the brain that are involved in attention deficits are many, and unless you know which one specifically is the one that you're addressing, that is not functioning very well, you cannot prescribe the right medication for it," Miranda said.
For Danny, that meant the puzzle was solved in ways his grandparents never would have guessed.
"He wasn't a hyper child at all," Jeanne Rodgers said
Now on ADHD medication and specific therapy for his decoding problem, Danny has a lot to say.
"I didn't like learning. I thought it was boring ," Danny admitted in Miranda's office.
But now "it's kind of fun," he said.
"He got nine out of 10 'outstandings' on his report card! " his grandmother marveled.
Danny's unhappiness used to tear up his grandparents. Jeanne Rodgers and her husband, Howard, are spending all they can on his special therapy, and have also spent a bundle on the tests with Miranda, almost none of which were covered by insurance. But both of them said the costs have been well worth it.
Still, some leading doctors say it's too soon to use sophisticated tests like these clinically, and that people might be wasting their money on them.
Dr. Bradley Peterson, director of the Pediatric Neuropsychiatry Research program at Columbia College of Physicians and Surgeons, said the technology is not there yet.
"No test can tell you that this child has ADHD and that one doesn't," Peterson said. "At least at present day. Hopefully, in the next year or coming years, we might have that, but we don't yet."
Others who work with the technology routinely, such as Dr. Sandlan Lowe, a professor in the departments of psychiatry, physiology and neuroscience at New York University School of Medicine, said it can help in reaching a diagnosis.
"In Europe, for instance, EEG and quantitative EEG is routinely done," Lowe said. "In this country, I think there are a lot of neurologists who have the idea that it's just not that helpful. And I have to tell you that in the right hands, it's a very useful tool."
So why isn't it used more often? A number of doctors said reading the MRIs and EEGs is complicated, and not every neurologist is properly trained to read them. The tests are also expensive, and are often not covered by insurance.
Many scam artists have also claimed they could read these brain imaging tests when they could not, bilking people out of thousands of dollars.
But Miranda, as well as many patients, believe they are on the cutting edge of a new frontier in diagnosing and treating children's cognitive problems.
Jan Jensen, a nurse whose husband is a surgeon, worried about the attention problems she sawin her three children. But she wasn't happy that her family practictioner suggested prescribing Ritalin without doing any tests.
Lindsey, 12, always seemed restless and unfocused, Jensen said. Meagan, 8, was having significant trouble reading. But Jensen was especially worried about 9-year-old Zach.
"He's like the energizer bunny on crack. I'm telling you, this kid is constantly going," she said, adding he has almost no fear and little ability to understand the consequences of his actions.
All three had MRIs and quantitative EEGs, in addition to neuropsych workups. Lindsey's results weren't a surprise; she showed clear signs of attention deficit problems, Miranda said. But he recommended a different medication than Ritalin.
But the other children's data yielded some surprises. Zach's tests showed signs of ADHD but also structural problems in his brain.
"He has an area of lack of development of the hypocampus here. This is a finding that explains some of the problems that he does have sometimes remembering or paying attention," Miranda said.
That information led Miranda to suggest not only medication but targeted therapy, in this case music lessons, to help teach the other side of Zach's brain to pick up the slack.
Miranda contends specialized memory excercises that appeal to one particular side of the brain can train it to take over for the slower side.
Megan showed no signs of attention deficits or other brain issues.Miranda suggested simply helping her with her reading. Without this puzzle piece Megan would likely have been put on medication. Mom had assumed that Meagan, the youngest, likely had the same issue as her siblings.
By CLAIRE SHIPMAN and ARIANE NALTY
May 20, 2008
Two million American children have been diagnosed with attention deficit hyperactivity disorder, according to the National Institute of Mental Health. It's so common now that one child in a classroom of 25 or 30 will have the disorder. But parents often struggle a long time to figure out exactly what's going on in their child's head. Is he tired? Is she confused? Is he just acting up? Does she need help?
Dr. Fernando Miranda, a neurologist at the Bright Minds Institute in San Francisco, says diagnosing children with behavioral disorders like ADHD and autism without looking at their brains is like trying to diagnose heart problems without actually looking at the heart. Click here to read a story about Miranda's autism research.
On the other hand, some of Miranda's patients have found they had an attention deficit problem and didn't even know it. Miranda, and many other doctors, believe more objective tools for figuring out these puzzles are critical.
From an early age, 9-year-old Danny Rodgers had trouble speaking.
Danny's words were in his head; they just couldn't seem to find a way out. Embarrassed, he avoided talking altogether and stopped trying to make friends.
Danny's grandparents, Jeanne and Howard Rodgers, who have been raising him and his sister, Meghan, since their mother died, said the school system recommended speech therapy, and patience.
"They kept saying, 'He'll grow out of it. He'll grow out of it '," said Jeanne Rodgers.
But he never did .
"He'd cry a lot and say, 'I don't' like my life. I don't like what I'm doing. I don't want to go to school,'" said Danny's grandmother.
They went to see Miranda at the Bright Minds Institute, and Miranda took a different approach to treating Danny.
Danny was wired for a qunatitative electroencephalography, or EEG, a very sophisticated test that measures a brain's electrical output in response to certain stimuli. He also underwent a comprehensive neuropsychological exam, and magnetic resonance imaging of the brain.
Those tests revealed a lot of surprises.
"This child's IQ was 138," Miranda said. "And that's huge. That's so bright."
One EEG measurement, called a P300, showed normal and abnormal electrical impulses in Danny's brain with a series of bright colors.
Reading the scan, Miranda said Danny was not "perceiving" speech in the superior temporal gyrus.
Translation: Danny has what's known as an auditory processing issue. It wasn't so much that he was having trouble speaking or pronouncing things -- his brain wasn't understanding speech correctly.
Danny's problem was not a standard speech issue at all, and his years of conventional therapy were off target.
Miranda pointed out a group of squiggly lines on the scan, showing Danny was likely to have an attention problem.
In a normal EEG, those squiggly lines would not be there in the frontal lobe section of this recording. Using those tests and other physical and behavioral information, Miranda diagnosed Danny with ADHD.
"The areas of the brain that are involved in attention deficits are many, and unless you know which one specifically is the one that you're addressing, that is not functioning very well, you cannot prescribe the right medication for it," Miranda said.
For Danny, that meant the puzzle was solved in ways his grandparents never would have guessed.
"He wasn't a hyper child at all," Jeanne Rodgers said
Now on ADHD medication and specific therapy for his decoding problem, Danny has a lot to say.
"I didn't like learning. I thought it was boring ," Danny admitted in Miranda's office.
But now "it's kind of fun," he said.
"He got nine out of 10 'outstandings' on his report card! " his grandmother marveled.
Danny's unhappiness used to tear up his grandparents. Jeanne Rodgers and her husband, Howard, are spending all they can on his special therapy, and have also spent a bundle on the tests with Miranda, almost none of which were covered by insurance. But both of them said the costs have been well worth it.
Still, some leading doctors say it's too soon to use sophisticated tests like these clinically, and that people might be wasting their money on them.
Dr. Bradley Peterson, director of the Pediatric Neuropsychiatry Research program at Columbia College of Physicians and Surgeons, said the technology is not there yet.
"No test can tell you that this child has ADHD and that one doesn't," Peterson said. "At least at present day. Hopefully, in the next year or coming years, we might have that, but we don't yet."
Others who work with the technology routinely, such as Dr. Sandlan Lowe, a professor in the departments of psychiatry, physiology and neuroscience at New York University School of Medicine, said it can help in reaching a diagnosis.
"In Europe, for instance, EEG and quantitative EEG is routinely done," Lowe said. "In this country, I think there are a lot of neurologists who have the idea that it's just not that helpful. And I have to tell you that in the right hands, it's a very useful tool."
So why isn't it used more often? A number of doctors said reading the MRIs and EEGs is complicated, and not every neurologist is properly trained to read them. The tests are also expensive, and are often not covered by insurance.
Many scam artists have also claimed they could read these brain imaging tests when they could not, bilking people out of thousands of dollars.
But Miranda, as well as many patients, believe they are on the cutting edge of a new frontier in diagnosing and treating children's cognitive problems.
Jan Jensen, a nurse whose husband is a surgeon, worried about the attention problems she sawin her three children. But she wasn't happy that her family practictioner suggested prescribing Ritalin without doing any tests.
Lindsey, 12, always seemed restless and unfocused, Jensen said. Meagan, 8, was having significant trouble reading. But Jensen was especially worried about 9-year-old Zach.
"He's like the energizer bunny on crack. I'm telling you, this kid is constantly going," she said, adding he has almost no fear and little ability to understand the consequences of his actions.
All three had MRIs and quantitative EEGs, in addition to neuropsych workups. Lindsey's results weren't a surprise; she showed clear signs of attention deficit problems, Miranda said. But he recommended a different medication than Ritalin.
But the other children's data yielded some surprises. Zach's tests showed signs of ADHD but also structural problems in his brain.
"He has an area of lack of development of the hypocampus here. This is a finding that explains some of the problems that he does have sometimes remembering or paying attention," Miranda said.
That information led Miranda to suggest not only medication but targeted therapy, in this case music lessons, to help teach the other side of Zach's brain to pick up the slack.
Miranda contends specialized memory excercises that appeal to one particular side of the brain can train it to take over for the slower side.
Megan showed no signs of attention deficits or other brain issues.Miranda suggested simply helping her with her reading. Without this puzzle piece Megan would likely have been put on medication. Mom had assumed that Meagan, the youngest, likely had the same issue as her siblings.
Controversial New Movement: Autistic and Proud
Activists Say Stop Looking for a Cure and Accept Autistic People as They Are
By DEBORAH ROBERTS, MICHELLE MAJOR and JONANN BRADY
June 10, 2008
Ari Ne'eman and Kristina Chew say they are the faces and voices of autism's future.
They're part of a controversial group hoping to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences. It's a message that has some parents of autistic children bewildered and angry.
Ne'eman, 20, is the founder of the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals.
"We believe that the autism spectrum and those on it, are important and necessary parts of the wide diversity present in human genetics," Ne-eman says on the ASAN Web site.
Ne'eman was diagnosed with Asperger's syndrome, a less severe form of autism, as a child.
"I think the others around me knew I was different from as early as I can remember," he told "Good Morning America."
When Ne'eman says that looking for a cure for autism is the wrong approach to take, he understands why some parents are upset -- especially those with very low-functioning, non-communicative autistic children.
"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.
'Ransom' Ad Sparks Action
Kristina Chew, a professor at St. Peter's College in New Jersey, is one of the growing number of parents involved the movement.
When her son, Charlie, was diagnosed with severe autism, Chew said, "I was completely in a gulf. I didn't believe it for months."
Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education.
"My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was," Chew said.
Parents like Chew and autistic adults like Ne'eman joined forces several months ago, after seeing an edgy new campaign to fight autism from the New York University Child Study Center that implied children with autism are held hostage by the disorder.
The NYU Child Study Center says the ads were about creating awareness, but Ne'eman says that instead, the ads reinforce prejudices about people with autism.
"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.
Ne'eman and his supporters protested so loudly, that the ads were cancelled three weeks after they were released.
Wouldn't Change Diagnosis
Many parents of autistic children say that Ne'eman and his group's views don't reflect their reality and should essentially be ignored.
Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."
Ne'eman believes history is on his side.
"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.
And the young activist says if he could go back and change his Asperger's diagnosis, he wouldn't.
"If there was a magic pill that would make me neurologically typical, normal, I wouldn't take it," Ne'eman said.
But a number of experts say his path might not be the answer for many others dealing with autism.
By DEBORAH ROBERTS, MICHELLE MAJOR and JONANN BRADY
June 10, 2008
Ari Ne'eman and Kristina Chew say they are the faces and voices of autism's future.
They're part of a controversial group hoping to radically change the way others look at autism. Their message: Stop the search for a cure and begin celebrating autistic people for their differences. It's a message that has some parents of autistic children bewildered and angry.
Ne'eman, 20, is the founder of the Autistic Self Advocacy Network, a non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals.
"We believe that the autism spectrum and those on it, are important and necessary parts of the wide diversity present in human genetics," Ne-eman says on the ASAN Web site.
Ne'eman was diagnosed with Asperger's syndrome, a less severe form of autism, as a child.
"I think the others around me knew I was different from as early as I can remember," he told "Good Morning America."
When Ne'eman says that looking for a cure for autism is the wrong approach to take, he understands why some parents are upset -- especially those with very low-functioning, non-communicative autistic children.
"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.
'Ransom' Ad Sparks Action
Kristina Chew, a professor at St. Peter's College in New Jersey, is one of the growing number of parents involved the movement.
When her son, Charlie, was diagnosed with severe autism, Chew said, "I was completely in a gulf. I didn't believe it for months."
Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education.
"My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was," Chew said.
Parents like Chew and autistic adults like Ne'eman joined forces several months ago, after seeing an edgy new campaign to fight autism from the New York University Child Study Center that implied children with autism are held hostage by the disorder.
The NYU Child Study Center says the ads were about creating awareness, but Ne'eman says that instead, the ads reinforce prejudices about people with autism.
"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.
Ne'eman and his supporters protested so loudly, that the ads were cancelled three weeks after they were released.
Wouldn't Change Diagnosis
Many parents of autistic children say that Ne'eman and his group's views don't reflect their reality and should essentially be ignored.
Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."
Ne'eman believes history is on his side.
"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.
And the young activist says if he could go back and change his Asperger's diagnosis, he wouldn't.
"If there was a magic pill that would make me neurologically typical, normal, I wouldn't take it," Ne'eman said.
But a number of experts say his path might not be the answer for many others dealing with autism.
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