A new therapeutical treatment for autism that can be used to treat children as young as 18 months improves their IQ, language ability and social interaction, according to a study published Monday.
"This is the first controlled study of an intensive early intervention that is appropriate for children with autism who are less than two-and-a-half years of age," said Geraldine Dawson, lead author of the study.
"It is crucial that we can offer parents effective therapies for children in this age range," added Dawson, currently chief science officer of Autism Speaks.
"By starting as soon as the toddler is diagnosed, we hope to maximize the positive impact of the intervention."
The research used an approach known as the "Early Start Denver Model," (ESDM) which combines use of applied behavioral analysis and development "relationship-based" techniques, according to the study published in the journal Pediatrics.
The approach is the first to be used on children younger than pre-school age and yielded impressive results in treating autism, a neurodevelopmental disorder believed to affect one in 100 children in the United States.
The study was carried out over five years, and involved 48 children between the ages of 18 and 30 months who suffered from autism but had no other health issues.
The approach is the first to be used on children younger than pre-school age and yielded impressive results in treating autism, a neurodevelopmental disorder believed to affect one in 100 children in the United States.
The study was carried out over five years, and involved 48 children between the ages of 18 and 30 months who suffered from autism but had no other health issues.
The group was divided into two sections, the first of which underwent therapy using the Denver Model, while the second was referred to community-based therapy programs.
University of Washington at Seattle specialists treated the first group for 20 hours a week, in two sessions of two hours each, five days a week.
The children in the first group also received five hours of parent-delivered therapy a week.
At the end of the study, the children in the first group had improved their IQ scores by approximately 18 points, compared to an improvement of approximately 10 points in the second group, the researchers said.
Seven of the children receiving the Denver Model therapy showed enough improvement in their overall skills that their diagnosis was downgraded from autism to a milder condition, while only one child in the second group improved as significantly.
"We believe that the ESDM group made much more progress because it involved carefully structured teaching and a relationship-based approach to learning with many, many learning opportunities embedded in play," said Sally Rogers, a co-author of the study and professor of psychiatry and behavioral sciences at the University of California, Davis.
She also stressed the benefits of beginning the therapy at the earliest possible age.
"Infant brains are quite malleable so with this therapy we're trying to capitalize on the potential of learning than an infant's brain has in order to limit autism's deleterious effects, to help children lead better lives."
Tuesday, December 1, 2009
Saturday, November 7, 2009
Aspergers:A Powerful Identity, a Vanishing Diagnosis
By CLAUDIA WALLIS
Published: November 2, 2009
It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.
A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”
Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.
In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.
Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.
Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.
The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”
The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”
Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.
n interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.
“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”
But some younger people involved in the growing autism self-advocacy movement see things differently.
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.
Published: November 2, 2009
It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.
In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.
Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.
If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.
“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”
Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”
But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.
Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.
Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.
Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.
Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.
The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.
Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.
The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.
And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.
A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”
Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.
In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.
Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.
Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.
The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”
The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”
Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.
n interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.
“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”
But some younger people involved in the growing autism self-advocacy movement see things differently.
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.
The Asperger's diagnosis
An article in today's New York Times - A Powerful Identity, a Vanishing Diagnosis - reports that the "Asperger's Syndrome" diagnosis may be eliminated from the 2012 diagnostic manual (D.S.M.-V). In its place, would be a single broad diagnosis of "autism spectrum disorder."
According to the article, the American Psychiatric Association is expected to post the working group's final proposal on the diagnostic manual's web site in January and invite comment from the public. That will be a fascinating comment thread to follow. I have not yet met an individual with Asperger's Syndrome who was reluctant to express his or her strongly felt views on a topic.
I first heard the word "Asperger's" from a speech and language teacher when our son was in first grade, in the fall of 1996. She had only recently learned about the Syndrome and thought it might fit - I ran a computer search that night, and she was right. The label didn't lead us to a miracle cure - and we weren't looking for one. It did help connect us with a virtual community of parents of kids with Aspergers and adults with Aspergers so we could start learning what others were doing to help support and compensate for the confusing range of qualities and behaviors that often appear as part of Asperger's Syndrome.
Interestingly, we first suspected that our son might have autism much earlier, and our pediatrician (who thought we were being neurotic first time parents) referred us to a respected developmental psychologist when our son was three. The psychologist tested our son and reported that he could not be autistic because he was "not retarded." Thankfully, the understanding of autism spectrum disorders has advanced significantly since then.
Soon after we discovered the Asperger's Syndrome label a child psychologist explained that, in her view, Asperger's Syndrome describes a cluster of seemingly unrelated skills and deficits that come together for some individuals on the autism spectrum - and, make no mistake, wherever you happen to fit on the autism spectrum, "life is going to be hard." It sounds like the D.S.M-V may be headed in this direction.
Our son attended a high school for kids with high functioning autism, Asperger's Syndrome and non-verbal learning disabilities. There were about 50 students and it was a good laboratory within which to test the saying that - "If you have seen one person with Asperger's . . . you have seen one person with Asperger's." These kids were all unique, and they all identified in different ways. But the truth is, almost all of them faced significant challenges that will make life hard - the two hallmarks were social awkwardness and great difficulties with organization (what psychologists refer to as executory planning). The great joy of the school, was that many of the students also presented unique and fascinating strengths and refreshing honesty.
I am watching these former high school students enter young adulthood now. And, much as I wish it was not true, I think life on the spectrum is hard. But hard does not mean bad - just hard. One of my co-workers shared a story the other day about an accomplishment. She hiked to the bottom of the Grand Canyon in early September. The next morning, as she stood in 97 degree heat in the shade she looked 7,000 feet up at the rim and saw two tiny trees at the top. And she wondered whether she could ever make it to the top. Of course, she did, one step at a time. That image works for me. It is a hard climb, but a beautiful climb, and we are taking it one day at a time.
I am going to be very interested to read and hear what the Asperger's and autism communities have to say about the proposed diagnostic changes. I've always thought that the label doesn't matter - what does matter is understanding the full range of support that might help each individual capitalize on his or her strengths and address his or her challenges. However, I think I may have been wrong. We do, after all, live in a "neurotypical" world and labels, as it turns out, can matter a lot in dealing with the social services maze.
According to the article, the American Psychiatric Association is expected to post the working group's final proposal on the diagnostic manual's web site in January and invite comment from the public. That will be a fascinating comment thread to follow. I have not yet met an individual with Asperger's Syndrome who was reluctant to express his or her strongly felt views on a topic.
I first heard the word "Asperger's" from a speech and language teacher when our son was in first grade, in the fall of 1996. She had only recently learned about the Syndrome and thought it might fit - I ran a computer search that night, and she was right. The label didn't lead us to a miracle cure - and we weren't looking for one. It did help connect us with a virtual community of parents of kids with Aspergers and adults with Aspergers so we could start learning what others were doing to help support and compensate for the confusing range of qualities and behaviors that often appear as part of Asperger's Syndrome.
Interestingly, we first suspected that our son might have autism much earlier, and our pediatrician (who thought we were being neurotic first time parents) referred us to a respected developmental psychologist when our son was three. The psychologist tested our son and reported that he could not be autistic because he was "not retarded." Thankfully, the understanding of autism spectrum disorders has advanced significantly since then.
Soon after we discovered the Asperger's Syndrome label a child psychologist explained that, in her view, Asperger's Syndrome describes a cluster of seemingly unrelated skills and deficits that come together for some individuals on the autism spectrum - and, make no mistake, wherever you happen to fit on the autism spectrum, "life is going to be hard." It sounds like the D.S.M-V may be headed in this direction.
Our son attended a high school for kids with high functioning autism, Asperger's Syndrome and non-verbal learning disabilities. There were about 50 students and it was a good laboratory within which to test the saying that - "If you have seen one person with Asperger's . . . you have seen one person with Asperger's." These kids were all unique, and they all identified in different ways. But the truth is, almost all of them faced significant challenges that will make life hard - the two hallmarks were social awkwardness and great difficulties with organization (what psychologists refer to as executory planning). The great joy of the school, was that many of the students also presented unique and fascinating strengths and refreshing honesty.
I am watching these former high school students enter young adulthood now. And, much as I wish it was not true, I think life on the spectrum is hard. But hard does not mean bad - just hard. One of my co-workers shared a story the other day about an accomplishment. She hiked to the bottom of the Grand Canyon in early September. The next morning, as she stood in 97 degree heat in the shade she looked 7,000 feet up at the rim and saw two tiny trees at the top. And she wondered whether she could ever make it to the top. Of course, she did, one step at a time. That image works for me. It is a hard climb, but a beautiful climb, and we are taking it one day at a time.
I am going to be very interested to read and hear what the Asperger's and autism communities have to say about the proposed diagnostic changes. I've always thought that the label doesn't matter - what does matter is understanding the full range of support that might help each individual capitalize on his or her strengths and address his or her challenges. However, I think I may have been wrong. We do, after all, live in a "neurotypical" world and labels, as it turns out, can matter a lot in dealing with the social services maze.
Wednesday, October 7, 2009
Autism Study Putting Prevalence at 1 in 91 American Children, Including 1 in 58 Boys
Autism Speaks Responds to New Pediatrics Autism Study Putting Prevalence at 1 in 91 American Children, Including 1 in 58 Boys
New Findings Reinforce the Urgency of Autism as a Major Public Health Crisis, Requiring Intensified Action from the Public and Private Sectors
NEW YORK, N.Y. (October 5, 2009) – Autism Speaks, the nation's largest autism science and advocacy organization, today responded to a new study published in the American Academy of Pediatrics' journal Pediatrics that found a parent-reported autism prevalence rate of one in every 91 American children, including one in 58 boys. The most recent ASD prevalence estimate reported by the Centers for Disease Control (CDC) in 2007 was approximately one in 150 (including one in 94 boys), making autism the most prevalent childhood developmental disorder. Autism Speaks said the new findings reinforced the fact that autism is an urgent and growing public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors.
“There is converging evidence that autism spectrum disorders affect about one percent of the population,” said Geraldine Dawson, Ph.D., Autism Speaks Chief Science Officer. “This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”
“These new numbers should serve as a renewed call to action to take on what is clearly a major public health crisis not only in this country, but around the world,” said Bob Wright, co-founder of Autism Speaks. “People with autism are still not getting the therapies they need and adequate medical care for the medical conditions often associated with this disorder. And our society has yet to come to grips with the fact that this growing population of children with autism will become adults with autism who require a lifetime of services and support. We must act now to address these short and long-term challenges.”
The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007 used data gathered as part of the 2007 National Survey of Children's Health (NSCH), a national survey directed and funded by the Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC). More than 78,000 parents of children aged 3 to 17 years were asked whether their child currently had an Autism Spectrum Disorder diagnosis – including autistic disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), or Asperger's Syndrome – or whether their child had been given that diagnosis in the past, but was no longer diagnosed with ASD.
New Findings Reinforce the Urgency of Autism as a Major Public Health Crisis, Requiring Intensified Action from the Public and Private Sectors
NEW YORK, N.Y. (October 5, 2009) – Autism Speaks, the nation's largest autism science and advocacy organization, today responded to a new study published in the American Academy of Pediatrics' journal Pediatrics that found a parent-reported autism prevalence rate of one in every 91 American children, including one in 58 boys. The most recent ASD prevalence estimate reported by the Centers for Disease Control (CDC) in 2007 was approximately one in 150 (including one in 94 boys), making autism the most prevalent childhood developmental disorder. Autism Speaks said the new findings reinforced the fact that autism is an urgent and growing public health crisis that affects most individuals across their lifespan and demands a commensurate level of action from both the public and private sectors.
“There is converging evidence that autism spectrum disorders affect about one percent of the population,” said Geraldine Dawson, Ph.D., Autism Speaks Chief Science Officer. “This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”
“These new numbers should serve as a renewed call to action to take on what is clearly a major public health crisis not only in this country, but around the world,” said Bob Wright, co-founder of Autism Speaks. “People with autism are still not getting the therapies they need and adequate medical care for the medical conditions often associated with this disorder. And our society has yet to come to grips with the fact that this growing population of children with autism will become adults with autism who require a lifetime of services and support. We must act now to address these short and long-term challenges.”
The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007 used data gathered as part of the 2007 National Survey of Children's Health (NSCH), a national survey directed and funded by the Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC). More than 78,000 parents of children aged 3 to 17 years were asked whether their child currently had an Autism Spectrum Disorder diagnosis – including autistic disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), or Asperger's Syndrome – or whether their child had been given that diagnosis in the past, but was no longer diagnosed with ASD.
Monday, September 7, 2009
PCT apologises for delays over autism diagnosis
THE dad of an autistic boy has criticised Swindon Primary Care Trust for the time it took to diagnose his three-year-old son.
Iain Counsel was finally told his son was autistic in June – almost two years after he first appealed to Swindon PCT to assess three-year-old Scott for signs of the condition.
Caroline Fowles, chief executive of Swindon PCT, has apologised to the family.
Responding to a letter Mr Counsel sent in January this year, chief executive of Swindon PCT Caroline Fowles apologised for a catalogue of delays between appointments.
In her letter, Ms Fowles said: “I would like to apologise that your experience of the service, both in terms of time delay and then engagement, was not satisfactory and that this added to your anxieties in wanting to achieve the best for Scott.”
Mr Counsel, 37, of Langford Grove, Old Walcot, claimed that delays over the diagnosis has robbed him of two years of vital developmental treatment. He said: “As far as I’m concerned they have robbed my son of his first words.
“With a diagnosis and subsequent treatment I have no doubt we would have seen even small signs in communication from Scott by now. Instead he’s a four-year-old who talks in grunts and screams.”
Mr Counsel started to suspect something was not right with Scott when, at 20 months, he still had not taken his first steps or formed his first word.
“I just noticed he wasn’t developing half as quickly as his peers,” he said. “While other children were saying ‘mamma’ and ‘dadda’, Scott was communicating through noises.”
Mr Counsel waited five months for an appointment with Scott’s paediatrician. The doctor revealed suspicions in her notes that Scott had autism at her first meeting with the family on December 18, 2007, but had not shared them with his concerned parents.
Mr Counsel said: “It is disgusting. As a parent you would sooner have bad news than no news at all and as far as I am concerned it was the doctor’s duty to keep us informed.”
Mr Counsel said he is also furious that Scott’s doctor had discussed his condition with a receptionist, inviting her to make her own comments.
In a paragraph written by Scott’s doctor, she said: “The receptionist reported that Scott was on the go the whole time, with his parent running round after him to try and keep tabs on him.
“He was into everything and explored the room. He came round behind the receptionist’s desk and sat on the floor next to her and as she was talking to him, looked up at her.”
Mr Counsel said he was incensed by the inclusion of the observations in his son’s medical notes. He said: “Is she a doctor? Is she a autism specialist or a child psychologist? No.
“So why the hell are her observations included in my son’s medical history.
In March this year, Scott was given a Sadler Assessment, a process designed to monitor a child for signs of autism. His anxious parents had their suspicions confirmed on June 26 – almost two years after they first flagged up their worries.
Mr Counsel now hopes to meet Ms Fowles to raise wider concerns. He claims that since Scott was diagnosed with autism, the PCT has offered no support or advice regarding potential treatment.
Mr Counsel is now awaiting confirmation for a date to meet Ms Fowles.
Caroline Fowles, chief executive of Swindon Primary Care Trust, said: “The health and well being of our patients is our key focus, and we take all concerns from service users very seriously and conduct thorough investigations.
“In this instance, however, we have apologised to the family that the appropriate care and support for their son and the delay it took to receive an appointment was unacceptable.
“We also recognise there is learning for a number of our professionals involved. We have built this into a forward programme and we are committed to an improvement plan to ensure we learn from this experience.
“We have met with the family on a number of occasions to explore their concerns about their son’s care and the PCT needs to examine these further.
“PCT staff continue to work alongside their other professionals to ensure the right level of support for Scott and this will main our prime focus.”
Iain Counsel was finally told his son was autistic in June – almost two years after he first appealed to Swindon PCT to assess three-year-old Scott for signs of the condition.
Caroline Fowles, chief executive of Swindon PCT, has apologised to the family.
Responding to a letter Mr Counsel sent in January this year, chief executive of Swindon PCT Caroline Fowles apologised for a catalogue of delays between appointments.
In her letter, Ms Fowles said: “I would like to apologise that your experience of the service, both in terms of time delay and then engagement, was not satisfactory and that this added to your anxieties in wanting to achieve the best for Scott.”
Mr Counsel, 37, of Langford Grove, Old Walcot, claimed that delays over the diagnosis has robbed him of two years of vital developmental treatment. He said: “As far as I’m concerned they have robbed my son of his first words.
“With a diagnosis and subsequent treatment I have no doubt we would have seen even small signs in communication from Scott by now. Instead he’s a four-year-old who talks in grunts and screams.”
Mr Counsel started to suspect something was not right with Scott when, at 20 months, he still had not taken his first steps or formed his first word.
“I just noticed he wasn’t developing half as quickly as his peers,” he said. “While other children were saying ‘mamma’ and ‘dadda’, Scott was communicating through noises.”
Mr Counsel waited five months for an appointment with Scott’s paediatrician. The doctor revealed suspicions in her notes that Scott had autism at her first meeting with the family on December 18, 2007, but had not shared them with his concerned parents.
Mr Counsel said: “It is disgusting. As a parent you would sooner have bad news than no news at all and as far as I am concerned it was the doctor’s duty to keep us informed.”
Mr Counsel said he is also furious that Scott’s doctor had discussed his condition with a receptionist, inviting her to make her own comments.
In a paragraph written by Scott’s doctor, she said: “The receptionist reported that Scott was on the go the whole time, with his parent running round after him to try and keep tabs on him.
“He was into everything and explored the room. He came round behind the receptionist’s desk and sat on the floor next to her and as she was talking to him, looked up at her.”
Mr Counsel said he was incensed by the inclusion of the observations in his son’s medical notes. He said: “Is she a doctor? Is she a autism specialist or a child psychologist? No.
“So why the hell are her observations included in my son’s medical history.
In March this year, Scott was given a Sadler Assessment, a process designed to monitor a child for signs of autism. His anxious parents had their suspicions confirmed on June 26 – almost two years after they first flagged up their worries.
Mr Counsel now hopes to meet Ms Fowles to raise wider concerns. He claims that since Scott was diagnosed with autism, the PCT has offered no support or advice regarding potential treatment.
Mr Counsel is now awaiting confirmation for a date to meet Ms Fowles.
Caroline Fowles, chief executive of Swindon Primary Care Trust, said: “The health and well being of our patients is our key focus, and we take all concerns from service users very seriously and conduct thorough investigations.
“In this instance, however, we have apologised to the family that the appropriate care and support for their son and the delay it took to receive an appointment was unacceptable.
“We also recognise there is learning for a number of our professionals involved. We have built this into a forward programme and we are committed to an improvement plan to ensure we learn from this experience.
“We have met with the family on a number of occasions to explore their concerns about their son’s care and the PCT needs to examine these further.
“PCT staff continue to work alongside their other professionals to ensure the right level of support for Scott and this will main our prime focus.”
Autism screening tops Obama’s medical to-do list
By Nancy Shute U.S. News & World Report
Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on Whitehouse.gov . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.
But there are four hefty bullet points addressing autism. Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.
3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.
That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.
The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.
Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.
The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.
Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on Whitehouse.gov . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.
But there are four hefty bullet points addressing autism. Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.
3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.
That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.
The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.
Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.
The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.
Disclosing the best kept secret of autism
What’s the best-kept secret of autism? Well, it may very well be the one that you’re keeping. Whether you’re a parent of a child with ASD, or someone with autism the debate rages on: “Should I tell others about my/my child’s autism, or not?”
From the parent’s perspective – at least upon initial diagnosis – the tendency tends to swing to the “tell” side. In fact, more so than tell, even broadcast to anyone met. This is often the case, as when a parent first receives the diagnostic news there is shock, grief, lack of understanding as to what it might mean for their child, creating a need to outreach to anyone and everyone for support, for answers.
Fast forward a few years, and past the initial shock. While some parents continue to share their family’s news widely, many others begin to pull back, not wanting to generate negative stigma for their child (or themselves). “Sure, my son’s behavior might seem ‘strange’ to others, but it’s none of their business.”
As those children grow into their teen years and adulthood and for those adults diagnosed later in life, there are more difficult decisions. Does disclosure open up the flood of discrimination – whether overt or less seen – among peers? Among fellow employees? To one’s employer?
Some adults are loath to mention anything about their autism in the workplace. “Let them think I’m shy, quirky, not social. But at least I can stick to the job at hand and get it done; who cares about interpersonal interaction.” In some cases, those people taking this stance find that their silence impedes their abilities to get promoted; they find that their self-isolation keep them from any visibility at all to their employers and they’ve become anonymous.
Others opt to disclose to their colleagues or employers and are greeted with a desire to understand and support, making allowances for job responsibilities better suited for their needs. Some even offer to help “practice” social skills or provide mentorship in navigating through the often perplexing NT world. Others, unfortunately, find the invisible stigma once they’ve disclosed follows them throughout their workplace.
There clearly is no one answer, and the success individuals have in any of these options is as varied as the individual.
From the parent’s perspective – at least upon initial diagnosis – the tendency tends to swing to the “tell” side. In fact, more so than tell, even broadcast to anyone met. This is often the case, as when a parent first receives the diagnostic news there is shock, grief, lack of understanding as to what it might mean for their child, creating a need to outreach to anyone and everyone for support, for answers.
Fast forward a few years, and past the initial shock. While some parents continue to share their family’s news widely, many others begin to pull back, not wanting to generate negative stigma for their child (or themselves). “Sure, my son’s behavior might seem ‘strange’ to others, but it’s none of their business.”
As those children grow into their teen years and adulthood and for those adults diagnosed later in life, there are more difficult decisions. Does disclosure open up the flood of discrimination – whether overt or less seen – among peers? Among fellow employees? To one’s employer?
Some adults are loath to mention anything about their autism in the workplace. “Let them think I’m shy, quirky, not social. But at least I can stick to the job at hand and get it done; who cares about interpersonal interaction.” In some cases, those people taking this stance find that their silence impedes their abilities to get promoted; they find that their self-isolation keep them from any visibility at all to their employers and they’ve become anonymous.
Others opt to disclose to their colleagues or employers and are greeted with a desire to understand and support, making allowances for job responsibilities better suited for their needs. Some even offer to help “practice” social skills or provide mentorship in navigating through the often perplexing NT world. Others, unfortunately, find the invisible stigma once they’ve disclosed follows them throughout their workplace.
There clearly is no one answer, and the success individuals have in any of these options is as varied as the individual.
Thursday, March 12, 2009
Inside the autism treatment maze
No single approach is best for every child
Every child who receives the diagnosis of autism may be different, but the families of those children face the same overwhelming challenge — finding the best treatment for the complex condition.
While there has been significant progress in easing symptoms of autism and educating children diagnosed with the disorder, there is little agreement among doctors, parents and researchers over which type of treatment most effectively helps an affected child grow into an independent adult.
Parents can find themselves confronted with a confusing maze of often expensive strategies and methods, some of them promising miracle cures but backed by little or no medical evidence.
"With autism, the variation in treatments is huge," says Laura Schreibman, an autism researcher and professor of psychology at the University of California at San Diego. "Parents not only have to deal with the emotional impact of the devastating diagnosis, [but] there’s no clear course of where to go. The amount of garbage that's out there and what parents have to sift through is truly astounding."
For many kids, autism treatment involves some combination of intensive behavioral therapy, speech and language therapy and special education in public schools. Anecdotal reports support newer forms of play-based behavioral therapies and alternative methods involving vitamins and dietary restrictions, although many autism experts vigorously disagree over whether these offer benefit.
'The beginning of this journey'
"We do have some important knowledge in treatment of autism, but we’re still very much at the beginning of this journey," says Geraldine Dawson, a professor of psychology at the Center on Human Development and Disability at the University of Washington in Seattle.
Since autism was first recognized in 1943, the search for an effective treatment has been frustrating for those involved. Once promising medical treatments have later been shown in tests to have no benefit. Research supporting newer or alternative treatments is lacking.
The causes of autism are unclear, and the wide range in the type and severity of a patient's disabilities can make it particularly challenging to select a specific therapy.
In 2001, a report from the National Academy of Sciences found that children with autism should receive at least 25 hours a week of intensive training beginning as young as age 2. Early diagnosis, now being given to children as young as 8 months, improves the chances of treatment success, experts say.
"We know that most children, but not all because we can’t guarantee, do well with early intervention," says Dr. Fred Volkmar, a professor of child psychiatry at Yale University and an expert on autism.
But the report stopped short of endorsing any particular treatment beyond education and support for parents, noting that the type of treatment might differ depending on the child.
"There is no one treatment that is going to work for all children or one treatment that is going to do everything for any given child over a long period of time," says Catherine Lord, director of the autism and communication disorders program at the University of Michigan in Ann Arbor and chairwoman of the National Academy of Sciences expert panel.
Many children with autism have additional problems such as gastrointestinal illnesses, sleeping difficulties or anxiety that can complicate treatment, researchers also note.
Click for related information
Guide to treatment options
A treatment program called Applied Behavior Analysis (ABA), which is based upon a rewards system, is widely accepted by parents and doctors largely because it is the most researched and is supported by numerous anecdotal success stories. ABA is considered especially beneficial for children with more severe symptoms.
ABA calls for one-on-one interaction between a teacher and a child for up to 40 hours a week. In the highly structured program toddlers receive positive reinforcement for initially learning simple actions like identifying colors and then gradually working up to more advanced activities that target deficits in learning, language, play-interaction and attention.
Advocates of this behavioral therapy pioneered by Dr. O. Ivaar Lovaas, professor emeritus at the University of California at Los Angeles, point to a study published in 1987 that suggested that with a comprehensive ABA program of 40 hours a week, about half of kids with autism were indistinguishable from other kids at age 7. But even within the field, the research has been questioned.
"No one else has been able to replicate that," says Lord. "That finding was an anomaly."
Every child who receives the diagnosis of autism may be different, but the families of those children face the same overwhelming challenge — finding the best treatment for the complex condition.
While there has been significant progress in easing symptoms of autism and educating children diagnosed with the disorder, there is little agreement among doctors, parents and researchers over which type of treatment most effectively helps an affected child grow into an independent adult.
Parents can find themselves confronted with a confusing maze of often expensive strategies and methods, some of them promising miracle cures but backed by little or no medical evidence.
"With autism, the variation in treatments is huge," says Laura Schreibman, an autism researcher and professor of psychology at the University of California at San Diego. "Parents not only have to deal with the emotional impact of the devastating diagnosis, [but] there’s no clear course of where to go. The amount of garbage that's out there and what parents have to sift through is truly astounding."
For many kids, autism treatment involves some combination of intensive behavioral therapy, speech and language therapy and special education in public schools. Anecdotal reports support newer forms of play-based behavioral therapies and alternative methods involving vitamins and dietary restrictions, although many autism experts vigorously disagree over whether these offer benefit.
'The beginning of this journey'
"We do have some important knowledge in treatment of autism, but we’re still very much at the beginning of this journey," says Geraldine Dawson, a professor of psychology at the Center on Human Development and Disability at the University of Washington in Seattle.
Since autism was first recognized in 1943, the search for an effective treatment has been frustrating for those involved. Once promising medical treatments have later been shown in tests to have no benefit. Research supporting newer or alternative treatments is lacking.
The causes of autism are unclear, and the wide range in the type and severity of a patient's disabilities can make it particularly challenging to select a specific therapy.
In 2001, a report from the National Academy of Sciences found that children with autism should receive at least 25 hours a week of intensive training beginning as young as age 2. Early diagnosis, now being given to children as young as 8 months, improves the chances of treatment success, experts say.
"We know that most children, but not all because we can’t guarantee, do well with early intervention," says Dr. Fred Volkmar, a professor of child psychiatry at Yale University and an expert on autism.
But the report stopped short of endorsing any particular treatment beyond education and support for parents, noting that the type of treatment might differ depending on the child.
"There is no one treatment that is going to work for all children or one treatment that is going to do everything for any given child over a long period of time," says Catherine Lord, director of the autism and communication disorders program at the University of Michigan in Ann Arbor and chairwoman of the National Academy of Sciences expert panel.
Many children with autism have additional problems such as gastrointestinal illnesses, sleeping difficulties or anxiety that can complicate treatment, researchers also note.
Click for related information
Guide to treatment options
A treatment program called Applied Behavior Analysis (ABA), which is based upon a rewards system, is widely accepted by parents and doctors largely because it is the most researched and is supported by numerous anecdotal success stories. ABA is considered especially beneficial for children with more severe symptoms.
ABA calls for one-on-one interaction between a teacher and a child for up to 40 hours a week. In the highly structured program toddlers receive positive reinforcement for initially learning simple actions like identifying colors and then gradually working up to more advanced activities that target deficits in learning, language, play-interaction and attention.
Advocates of this behavioral therapy pioneered by Dr. O. Ivaar Lovaas, professor emeritus at the University of California at Los Angeles, point to a study published in 1987 that suggested that with a comprehensive ABA program of 40 hours a week, about half of kids with autism were indistinguishable from other kids at age 7. But even within the field, the research has been questioned.
"No one else has been able to replicate that," says Lord. "That finding was an anomaly."
Monday, March 2, 2009
Study uses music to explore the autistic brain's emotion processing
Music has a universal ability to tap into our deepest emotions. Unfortunately, for children with autism spectrum disorders (ASD), understanding emotions is a very difficult task. Can music help them? Thanks to funding from the GRAMMY Foundation Grant Program, researchers at UCLA are about to find out.
Individuals with ASD have trouble recognizing emotions, particularly social emotions conveyed through facial expressions — a frown, a smirk or a smile. This inability can rob a child of the chance to communicate and socialize and often leads to social isolation.
In an innovative study led by Istvan Molnar-Szakacs, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity, music will be used as a tool to explore the ability of children with ASD to identify emotions in musical excerpts and facial expressions.
"Music has long been known to touch autistic children," Molnar-Szakacs said. "Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children."
In addition, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy.
But no one has ever done a study to see if children with ASD process musical emotions and social emotions in the same way that typically developing children do.
In this study, Molnar-Szakacs will use "emotional music" to examine the brain regions involved in emotion processing.
"Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions."
The overarching goal of the study, of course, is to gain insights about the causes of autism. Molnar-Szakacs will use neuroimaging — functional magnetic resonance imaging, or fMRI — to look at and compare brain activity in ASD children with brain activity in typically developing kids while both groups are engaged in identifying emotions from faces and musical excerpts.
"The study should help us to better understand how the brain processes emotion in children with autism; that, in turn, will help us develop more optimal interventions," Molnar-Szakacs said. "Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions, from cognition to creativity."
Approximately 15 children with ASD, ranging in age from 10 to 13, will participate in the study, which is being conducted under the auspices of the Help Group–UCLA Autism Research Alliance. The alliance, directed by UCLA's Elizabeth Laugeson, is an innovative partnership between the nonprofit Help Group, which serves children with special needs related to autism, and the Semel Institute for Neuroscience and Human Behavior at UCLA, and is dedicated to enhancing and expanding ASD research. The project is also being conducted in collaboration with Katie Overy, co-director of the Institute for Music in Human and Social Development at the University of Edinburgh, Scotland.
"The hope, of course, is that this work will not only be of scientific value and interest, but most of all, that it will translate into real-life improvements in the quality of the children's lives," Molnar-Szakacs said.
Individuals with ASD have trouble recognizing emotions, particularly social emotions conveyed through facial expressions — a frown, a smirk or a smile. This inability can rob a child of the chance to communicate and socialize and often leads to social isolation.
In an innovative study led by Istvan Molnar-Szakacs, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity, music will be used as a tool to explore the ability of children with ASD to identify emotions in musical excerpts and facial expressions.
"Music has long been known to touch autistic children," Molnar-Szakacs said. "Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children."
In addition, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy.
But no one has ever done a study to see if children with ASD process musical emotions and social emotions in the same way that typically developing children do.
In this study, Molnar-Szakacs will use "emotional music" to examine the brain regions involved in emotion processing.
"Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions."
The overarching goal of the study, of course, is to gain insights about the causes of autism. Molnar-Szakacs will use neuroimaging — functional magnetic resonance imaging, or fMRI — to look at and compare brain activity in ASD children with brain activity in typically developing kids while both groups are engaged in identifying emotions from faces and musical excerpts.
"The study should help us to better understand how the brain processes emotion in children with autism; that, in turn, will help us develop more optimal interventions," Molnar-Szakacs said. "Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions, from cognition to creativity."
Approximately 15 children with ASD, ranging in age from 10 to 13, will participate in the study, which is being conducted under the auspices of the Help Group–UCLA Autism Research Alliance. The alliance, directed by UCLA's Elizabeth Laugeson, is an innovative partnership between the nonprofit Help Group, which serves children with special needs related to autism, and the Semel Institute for Neuroscience and Human Behavior at UCLA, and is dedicated to enhancing and expanding ASD research. The project is also being conducted in collaboration with Katie Overy, co-director of the Institute for Music in Human and Social Development at the University of Edinburgh, Scotland.
"The hope, of course, is that this work will not only be of scientific value and interest, but most of all, that it will translate into real-life improvements in the quality of the children's lives," Molnar-Szakacs said.
USC researchers identify gene variant associated with both autism and gastrointestinal dysfunction
Altered expression of MET gene may contribute to increased risk of co-occurring medical conditions
A study led by researchers at the University of Southern California (USC) and Vanderbilt University have identified a specific gene variant that links increased genetic risk for autism with gastrointestinal (GI) conditions.
The findings suggest that disrupted signaling of the MET gene may contribute to a syndrome that includes autism and co-occurring gastrointestinal dysfunction, says principal investigator Pat Levitt, Ph.D., director of the Zilkha Neurogenetic Institute at the Keck School of Medicine of USC and chair-designate of the Department of cell and neurobiology.
The study will appear in the March Issue of the journal Pediatrics and is now available online.
Autism is a developmental disorder characterized by deficits in communication abilities, social behavior disruption and inflexible behavior. While gastrointestinal conditions are common among individuals with autism, researchers have long debated whether co-occurring GI dysfunction represents a unique autism subgroup, Levitt and lead author Daniel Campbell, Ph.D., say.
"Gastrointestinal disorders don't cause autism. Autism is a disorder of brain development," Levitt says. "However, our study is the first to bring together genetic risk for autism and co-occurring GI disorders in a way that provides a biologically plausible explanation for why they are seen together so often."
In the brain, the MET gene is expressed in developing circuits that are involved in social behavior and communication. Disturbances in MET expression result in alterations in how these critical circuits develop and mature, Levitt explains. Research indicates that MET also plays an important role in development and repair of the GI system.
Researchers analyzed medical history records from 214 families in the Autism Genetic Resource Exchange (AGRE). They found that a variant in the MET gene was associated with autism specifically in those families where an individual had co-occurring autism and a GI condition.
The study brings researchers closer to understanding the complex genetic risks for autism. However, further research is needed, as different combinations of genes are likely to result in different types of autism features, Levitt says.
"We believe that there are other genes that will help identify different subgroups of individuals who have autism spectrum disorder," he says. "We also believe that there needs to be research looking at whether the children with co-occurring GI dysfunction and autism have unique features that will help us predict what treatments will be best for them."
A study led by researchers at the University of Southern California (USC) and Vanderbilt University have identified a specific gene variant that links increased genetic risk for autism with gastrointestinal (GI) conditions.
The findings suggest that disrupted signaling of the MET gene may contribute to a syndrome that includes autism and co-occurring gastrointestinal dysfunction, says principal investigator Pat Levitt, Ph.D., director of the Zilkha Neurogenetic Institute at the Keck School of Medicine of USC and chair-designate of the Department of cell and neurobiology.
The study will appear in the March Issue of the journal Pediatrics and is now available online.
Autism is a developmental disorder characterized by deficits in communication abilities, social behavior disruption and inflexible behavior. While gastrointestinal conditions are common among individuals with autism, researchers have long debated whether co-occurring GI dysfunction represents a unique autism subgroup, Levitt and lead author Daniel Campbell, Ph.D., say.
"Gastrointestinal disorders don't cause autism. Autism is a disorder of brain development," Levitt says. "However, our study is the first to bring together genetic risk for autism and co-occurring GI disorders in a way that provides a biologically plausible explanation for why they are seen together so often."
In the brain, the MET gene is expressed in developing circuits that are involved in social behavior and communication. Disturbances in MET expression result in alterations in how these critical circuits develop and mature, Levitt explains. Research indicates that MET also plays an important role in development and repair of the GI system.
Researchers analyzed medical history records from 214 families in the Autism Genetic Resource Exchange (AGRE). They found that a variant in the MET gene was associated with autism specifically in those families where an individual had co-occurring autism and a GI condition.
The study brings researchers closer to understanding the complex genetic risks for autism. However, further research is needed, as different combinations of genes are likely to result in different types of autism features, Levitt says.
"We believe that there are other genes that will help identify different subgroups of individuals who have autism spectrum disorder," he says. "We also believe that there needs to be research looking at whether the children with co-occurring GI dysfunction and autism have unique features that will help us predict what treatments will be best for them."
Friday, February 27, 2009
Friendship House Autism Center plans announced
Muted lighting, soft colors and quiet plumbing — what sounds like interior options for a spa actually will be a carefully calibrated environment for autistic children.
“A lot of children with autism have issues with hypersensitivity, whether it’s a light flicker or the swish of a flushed toilet,” said architect Brian Doran, who conducted research and consulted behavior therapists for a modern vision in designing Friendship House’s $1.4 million Northeast Regional Autism Center expansion.
Friendship House officials on Thursday announced the 14,000-square-foot project, expected to begin in March, with a display of architectural renderings and a short tour of the proposed site, a former warehouse at Friendship House’s Maple Street offices.
Mr. Doran, with the Scran�ton design firm Hemmler & Camayd, also is the father of a mildly autistic child.
“We’re trying to create the right environment for therapists to execute their work,” he said.
Friendship House’s existing autistic program treats 60 children 2 to 21 years old at a building two blocks away on Derby Avenue. The expansion will move the program to Maple Street after the project’s expected completion in October.
According to the National Institute of Neurological Disorders and Stroke, autism is a condition in a group of developmental disorders characterized by impaired social interaction, verbal and nonverbal communication problems and limited activities or interests. It is estimated three to six children of every 1,000 will have autism, and boys are four times more likely to have autism than girls, the institute said.
“A lot of children with autism have issues with hypersensitivity, whether it’s a light flicker or the swish of a flushed toilet,” said architect Brian Doran, who conducted research and consulted behavior therapists for a modern vision in designing Friendship House’s $1.4 million Northeast Regional Autism Center expansion.
Friendship House officials on Thursday announced the 14,000-square-foot project, expected to begin in March, with a display of architectural renderings and a short tour of the proposed site, a former warehouse at Friendship House’s Maple Street offices.
Mr. Doran, with the Scran�ton design firm Hemmler & Camayd, also is the father of a mildly autistic child.
“We’re trying to create the right environment for therapists to execute their work,” he said.
Friendship House’s existing autistic program treats 60 children 2 to 21 years old at a building two blocks away on Derby Avenue. The expansion will move the program to Maple Street after the project’s expected completion in October.
According to the National Institute of Neurological Disorders and Stroke, autism is a condition in a group of developmental disorders characterized by impaired social interaction, verbal and nonverbal communication problems and limited activities or interests. It is estimated three to six children of every 1,000 will have autism, and boys are four times more likely to have autism than girls, the institute said.
Sunday, February 22, 2009
Computer Game Helps Autistic Children Recognize Emotions
An interactive computer software program called FaceSay™ has been shown to improve the ability of children with autism spectrum disorders (ASD) to recognize faces, facial expressions and emotions, according to the results of a study conducted by psychologists at the University of Alabama at Birmingham (UAB). FaceSay™, created by Symbionica L.L.C., features interactive games that let children with ASD practice recognizing the facial expressions of an avatar, or software “puppet.” Specifically, the computer games teach the children where to look for facial cues such as an eye gaze or a facial expression.
The study found that the children with Asperger Syndrome who used the FaceSay™ program made significant improvements in their ability to read facial expressions. The children with autism made less improvement. Children in both the autism and Asperger groups, however, both improved their ability to recognize emotions.
Specifically, the children with autism who used FaceSay™ averaged a mean score of 14.8 on a facial recognition test. The control group averaged 12.8. The children with Asperger Syndrome scored much higher with an average score of 18.4 compared to 15.4 by the control group.
On an emotion recognition skills test, the children with autism who used FaceSay™ scored an average of 6.53. The control group’s average score was 5.2. The children with Asperger Syndrome had a mean test score of 8.7 compared with the control group score of 6.79. UAB doctoral student Maria Hopkins, Ph.D., and UAB associate professor of psychology Fred Biasini, Ph.D., conducted the study.
Autism spectrum disorder includes a range of developmental disorders such as autism, Asperger Syndrome and other pervasive developmental disorders. Children with ASD often avoid eye contact with others, which prevents them from perceiving and understanding the emotions of others. Many have problems remembering faces.
Hopkins and Biasini tested 25 children with autism and 24 children with Asperger Syndrome. The children ranged in age from 6 to 15, with an average age of 10 years. The group consisted of 44 boys and five girls. The computer training sessions were held twice a week for at least six weeks for an average of 20 minutes each session. The software featured three interactive games.
Psychologists at UAB plan to conduct more studies to assess the longtime effects of the FaceSay™ intervention.
The study’s results were presented recently at a meeting of the Association for Psychological Science.
The study found that the children with Asperger Syndrome who used the FaceSay™ program made significant improvements in their ability to read facial expressions. The children with autism made less improvement. Children in both the autism and Asperger groups, however, both improved their ability to recognize emotions.
Specifically, the children with autism who used FaceSay™ averaged a mean score of 14.8 on a facial recognition test. The control group averaged 12.8. The children with Asperger Syndrome scored much higher with an average score of 18.4 compared to 15.4 by the control group.
On an emotion recognition skills test, the children with autism who used FaceSay™ scored an average of 6.53. The control group’s average score was 5.2. The children with Asperger Syndrome had a mean test score of 8.7 compared with the control group score of 6.79. UAB doctoral student Maria Hopkins, Ph.D., and UAB associate professor of psychology Fred Biasini, Ph.D., conducted the study.
Autism spectrum disorder includes a range of developmental disorders such as autism, Asperger Syndrome and other pervasive developmental disorders. Children with ASD often avoid eye contact with others, which prevents them from perceiving and understanding the emotions of others. Many have problems remembering faces.
Hopkins and Biasini tested 25 children with autism and 24 children with Asperger Syndrome. The children ranged in age from 6 to 15, with an average age of 10 years. The group consisted of 44 boys and five girls. The computer training sessions were held twice a week for at least six weeks for an average of 20 minutes each session. The software featured three interactive games.
Psychologists at UAB plan to conduct more studies to assess the longtime effects of the FaceSay™ intervention.
The study’s results were presented recently at a meeting of the Association for Psychological Science.
Toward A Long-sought Saliva Test For Autism
Researchers in Italy are reporting discovery of abnormal proteins in the saliva of autism patients that could eventually provide a clue for the molecular basis of this severe developmental disorder and could be used as a biomarker for a subgroup of patients with autism spectrum disorders (ASD).
Autism involves social withdrawal, impaired emotional responses and communication skills, and other symptoms. With no laboratory test available, scientists are searching for biomarkers such as abnormal proteins that appear in the body fluids of individuals with autism that may provide a way to accurately diagnose autism and track its response to potential treatments.
Massimo Castagnola, Irene Messana, Maria Giulia Torrioli and Fiorella Gurrieri, compared proteins in the saliva of 27 children with ASD to those in a control group without ASD. They discovered that at least one of four proteins in 19 children in the ASD group had significantly lower levels of phosphorylation. That key body process activates proteins so that they can work normally.
The results suggest that these abnormal proteins might be the clue for anomalies in the phosphorylation of proteins involved in development of central nervous system in early infancy that are involved in ASD.
Autism involves social withdrawal, impaired emotional responses and communication skills, and other symptoms. With no laboratory test available, scientists are searching for biomarkers such as abnormal proteins that appear in the body fluids of individuals with autism that may provide a way to accurately diagnose autism and track its response to potential treatments.
Massimo Castagnola, Irene Messana, Maria Giulia Torrioli and Fiorella Gurrieri, compared proteins in the saliva of 27 children with ASD to those in a control group without ASD. They discovered that at least one of four proteins in 19 children in the ASD group had significantly lower levels of phosphorylation. That key body process activates proteins so that they can work normally.
The results suggest that these abnormal proteins might be the clue for anomalies in the phosphorylation of proteins involved in development of central nervous system in early infancy that are involved in ASD.
Surprising Language Abilities In Children With Autism
What began as an informal presentation by a clinical linguist to a group of philosophers, has led to some surprising discoveries about the communicative language abilities of people with autism.
Several years back, Robert Stainton, now a philosophy professor at The University of Western Ontario, attended a presentation by his long-time friend Jessica de Villiers, a clinical linguist now at the University of British Columbia. The topic was Autism Spectrum Disorder (ASD). De Villiers explained that many individuals with ASD have significant difficulties with what linguists call "pragmatics." That is, people with ASD often have difficulty using language appropriately in social situations. They do not make appropriate use of context or knowledge of what it would be "reasonable to say." Most glaringly, many speakers with ASD have immense trouble understanding metaphor, irony, sarcasm, and what might be intimated or presumed, but not stated.
Drawing on his philosophical training, however, Stainton noticed less-than-obvious pragmatic abilities at work in de Villiers' examples, which were drawn from transcripts of conversations with 42 speakers with ASD -- abilities that had been missed by clinicians.
Thus began research to more clearly understand and define the conversational abilities and challenges of people with Autism Spectrum Disorder (ASD). Stainton and de Villiers' research, in collaboration with Peter Szatmari, a clinical psychiatrist at McMaster University, has shown that indeed, many individuals with ASD do have "a rich array of pragmatic abilities."
These researchers do not contest the well-established claim that people with ASD have difficulty with non-literal pragmatics, such as metaphors ("Juliet is the sun") or irony/sarcasm ("Boy, is that a good idea"). They have, however, found that many speakers with ASD do not show the same difficulty with literal pragmatics. An example is the phrase, "I took the subway north" from a transcript of a conversation with a research participant with ASD. The use of the word "the" could indicate there is only one subway in existence going north. "The subway" could also be referring to a subway car, a subway system or a subway tunnel. Taking account of the context and the listener's expectations, however, the individual using the phrase was able to convey the specific meaning he intended. That is, he used pragmatics effectively.
In short, Stainton and his colleagues produced surprising evidence to show that speakers with ASD use and understand pragmatics in cases of literal talk, as in the subway example.
Stainton, who is also Acting Associate Dean of Research in the Faculty of Arts and Humanities at Western, says, "It is especially gratifying and encouraging, because this is an Arts and Humanities contribution to clinical research. Without a philosophical perspective, this discovery might not have been made."
Related research allowed de Villiers and Szatmari to develop a rating scale of pragmatic abilities that can be used in the clinical assessment of people with ASD. Stainton says, "In the short term, their new tool will help identify where an individual fits on that spectrum. In the longer term, however, by making use of recent results in philosophy of language, it may contribute to our theoretical understanding of the boundary between knowledge of the meanings of words, and non-linguistic abilities -- specifically pragmatics."
Stainton believes that both clinicians who work with people with ASD, and language theorists who are interested in pragmatics for philosophical reasons, will find these results striking.
ASD affects approximately one in 165 people. The results of the research, conducted from a study of 42 children with autism and Asperger's Syndrome, has been published in the journal, Midwest Studies in Philosophy.
Several years back, Robert Stainton, now a philosophy professor at The University of Western Ontario, attended a presentation by his long-time friend Jessica de Villiers, a clinical linguist now at the University of British Columbia. The topic was Autism Spectrum Disorder (ASD). De Villiers explained that many individuals with ASD have significant difficulties with what linguists call "pragmatics." That is, people with ASD often have difficulty using language appropriately in social situations. They do not make appropriate use of context or knowledge of what it would be "reasonable to say." Most glaringly, many speakers with ASD have immense trouble understanding metaphor, irony, sarcasm, and what might be intimated or presumed, but not stated.
Drawing on his philosophical training, however, Stainton noticed less-than-obvious pragmatic abilities at work in de Villiers' examples, which were drawn from transcripts of conversations with 42 speakers with ASD -- abilities that had been missed by clinicians.
Thus began research to more clearly understand and define the conversational abilities and challenges of people with Autism Spectrum Disorder (ASD). Stainton and de Villiers' research, in collaboration with Peter Szatmari, a clinical psychiatrist at McMaster University, has shown that indeed, many individuals with ASD do have "a rich array of pragmatic abilities."
These researchers do not contest the well-established claim that people with ASD have difficulty with non-literal pragmatics, such as metaphors ("Juliet is the sun") or irony/sarcasm ("Boy, is that a good idea"). They have, however, found that many speakers with ASD do not show the same difficulty with literal pragmatics. An example is the phrase, "I took the subway north" from a transcript of a conversation with a research participant with ASD. The use of the word "the" could indicate there is only one subway in existence going north. "The subway" could also be referring to a subway car, a subway system or a subway tunnel. Taking account of the context and the listener's expectations, however, the individual using the phrase was able to convey the specific meaning he intended. That is, he used pragmatics effectively.
In short, Stainton and his colleagues produced surprising evidence to show that speakers with ASD use and understand pragmatics in cases of literal talk, as in the subway example.
Stainton, who is also Acting Associate Dean of Research in the Faculty of Arts and Humanities at Western, says, "It is especially gratifying and encouraging, because this is an Arts and Humanities contribution to clinical research. Without a philosophical perspective, this discovery might not have been made."
Related research allowed de Villiers and Szatmari to develop a rating scale of pragmatic abilities that can be used in the clinical assessment of people with ASD. Stainton says, "In the short term, their new tool will help identify where an individual fits on that spectrum. In the longer term, however, by making use of recent results in philosophy of language, it may contribute to our theoretical understanding of the boundary between knowledge of the meanings of words, and non-linguistic abilities -- specifically pragmatics."
Stainton believes that both clinicians who work with people with ASD, and language theorists who are interested in pragmatics for philosophical reasons, will find these results striking.
ASD affects approximately one in 165 people. The results of the research, conducted from a study of 42 children with autism and Asperger's Syndrome, has been published in the journal, Midwest Studies in Philosophy.
Saturday, February 21, 2009
Many Florida teachers may be ill-equipped to handle special-needs students
By CARA FITZPATRICK
Palm Beach Post Staff Writer
Saturday, February 07, 2009
These were the tools kindergarten teacher Wendy Portillo had to handle an unruly student: 10 tokens to be taken away if he misbehaved, the occasional help of a volunteer and another teacher, and a trip to the principal's office.
The choice she made in May - have students vote on whether then 5-year-old Alex Barton should remain in class at Morningside Elementary in Port St. Lucie - has been debated and reviled.
That Alex was being evaluated, and later was diagnosed with Asperger's syndrome, a form of autism, has only fueled the controversy.
But the incident may point to more than the judgment of one teacher. Parents, educators and disability advocates say it highlights an often overlooked problem with inclusion, the national trend toward placing special needs students in regular classrooms: Many general education teachers receive little to no training in how to manage students with disabilities before they walk into class.
"It's important to recognize that many of our teachers are going to have no training as teachers," said Jack Scott, director of Florida Atlantic University's Center for Autism and Related Disabilities.
Florida has addressed its teacher shortage in recent years by making it easier to join the profession. Teaching certificates can be earned without a degree in education and, with fast-track programs, certificates can be earned within months. That has helped to ease the shortage, but Scott said it also has resulted in uneven levels of training among teachers.
Even teachers who earned degrees in education may have taken just one or two classes in special education, making them aware of their legal responsibilities but unsure of how to manage a class in which one child may not respond the way other children do.
"The trend toward inclusion really has caused some difficulties for teachers because you have to treat (special needs students) differently," said Karen Lyman, a teacher-coach in St. Lucie County schools. "You have to learn how to teach that child without affecting the rest of the children."
'Old school' methods futile
Elementary school teachers may have a difficult time, too, because many younger children, such as Alex Barton, come to school without a diagnosis. The result can be months of limbo for both teacher and child before an appropriate placement is determined.
Melissa Barton, who removed her son from Morningside after the vote, said training seems to occur after a child is placed in a class rather than before.
"They give the child to the teacher and then they see if there are problems," she said.
Few have defended the choice Portillo made the day she asked her students to vote on whether Alex should remain in class, but many say her actions may point to a teacher who needed not only more training but also additional support.
Alex had struggled with behavior since his arrival at Morningside. Portillo said she sent him to the principal's office at least once a week.
On the day of the vote, he flicked crayons and crawled under a table, lifting it with his legs until his classmates' work scattered to the floor, according to the school district's investigation.
Portillo's options, as provided by a school support team, were to take away Alex's tokens, to send him to the classroom of a designated teacher or to send him to the principal's office.
Portillo doesn't remember if she took away the tokens that day. The designated teacher was off campus, as was the volunteer. She sent Alex to the principal's office only to have him returned to her. All before lunchtime.
"I'm not defending her choice of things to do, and I think Wendy's been clear that she regrets it, but nobody knows what being in that class with that constant behavior day after day was like," said Vicki Rodriguez, vice president of the St. Lucie teachers union.
Lyman said teachers often need to be trained to react differently to inappropriate behavior, and the worst reaction, though perhaps natural, is to become angry or frustrated with the child.
"Our automatic reaction is, 'Why are you doing that? Stop doing that' and that's not working," she said. But the attention to the bad behavior actually reinforces it.
Scott said many teachers rely on "old school" punitive methods of discipline, most of which don't work with special needs students, particularly those with autism who may miss social cues.
"You can't punish these kids into behaving well," he said.
Inclusion often is not the cheapest approach to teaching special needs children, Scott said, and with less and less money going to public schools in Florida, it can be difficult to provide the assistance they need.
"A lot of kids really need more and better teaching and that's often hard to pull off," he said.
Mother calls for training
In St. Lucie, the school district's philosophy is one of positive discipline rather than negative, said Deborah Iseman, executive director of professional development.
Both the union and the school district receive frequent requests from teachers for additional training in classroom management, school officials said. One class the union offers, Managing Anti-Social Behavior, always has a waiting list, Rodriguez said.
Eric Graff, who occasionally had Alex in his class at Morningside, said he believes school and state officials may finally be recognizing the need for more teacher training.
"I think the more education we get, the better it is for us," he said. "I don't have a problem saying I don't have all the answers for each child."
With little training or improper placement, both teacher and child may be at risk.
A kindergartner detached the retina of a teacher at Garden City Elementary in Fort Pierce last year, according to police reports. And the year before, a classroom aide at Garden City was fired after she allegedly fractured the arm of an 8-year-old disabled child by improperly restraining him.
Barton, who is searching for a new school for Alex, said such incidents point to a need for greater understanding about disabilities and better use of resources.
She said many teachers she speaks to want additional training, but have little time or opportunity.
"They make it impossible for teachers and impossible for students," she said.
Palm Beach Post Staff Writer
Saturday, February 07, 2009
These were the tools kindergarten teacher Wendy Portillo had to handle an unruly student: 10 tokens to be taken away if he misbehaved, the occasional help of a volunteer and another teacher, and a trip to the principal's office.
The choice she made in May - have students vote on whether then 5-year-old Alex Barton should remain in class at Morningside Elementary in Port St. Lucie - has been debated and reviled.
That Alex was being evaluated, and later was diagnosed with Asperger's syndrome, a form of autism, has only fueled the controversy.
But the incident may point to more than the judgment of one teacher. Parents, educators and disability advocates say it highlights an often overlooked problem with inclusion, the national trend toward placing special needs students in regular classrooms: Many general education teachers receive little to no training in how to manage students with disabilities before they walk into class.
"It's important to recognize that many of our teachers are going to have no training as teachers," said Jack Scott, director of Florida Atlantic University's Center for Autism and Related Disabilities.
Florida has addressed its teacher shortage in recent years by making it easier to join the profession. Teaching certificates can be earned without a degree in education and, with fast-track programs, certificates can be earned within months. That has helped to ease the shortage, but Scott said it also has resulted in uneven levels of training among teachers.
Even teachers who earned degrees in education may have taken just one or two classes in special education, making them aware of their legal responsibilities but unsure of how to manage a class in which one child may not respond the way other children do.
"The trend toward inclusion really has caused some difficulties for teachers because you have to treat (special needs students) differently," said Karen Lyman, a teacher-coach in St. Lucie County schools. "You have to learn how to teach that child without affecting the rest of the children."
'Old school' methods futile
Elementary school teachers may have a difficult time, too, because many younger children, such as Alex Barton, come to school without a diagnosis. The result can be months of limbo for both teacher and child before an appropriate placement is determined.
Melissa Barton, who removed her son from Morningside after the vote, said training seems to occur after a child is placed in a class rather than before.
"They give the child to the teacher and then they see if there are problems," she said.
Few have defended the choice Portillo made the day she asked her students to vote on whether Alex should remain in class, but many say her actions may point to a teacher who needed not only more training but also additional support.
Alex had struggled with behavior since his arrival at Morningside. Portillo said she sent him to the principal's office at least once a week.
On the day of the vote, he flicked crayons and crawled under a table, lifting it with his legs until his classmates' work scattered to the floor, according to the school district's investigation.
Portillo's options, as provided by a school support team, were to take away Alex's tokens, to send him to the classroom of a designated teacher or to send him to the principal's office.
Portillo doesn't remember if she took away the tokens that day. The designated teacher was off campus, as was the volunteer. She sent Alex to the principal's office only to have him returned to her. All before lunchtime.
"I'm not defending her choice of things to do, and I think Wendy's been clear that she regrets it, but nobody knows what being in that class with that constant behavior day after day was like," said Vicki Rodriguez, vice president of the St. Lucie teachers union.
Lyman said teachers often need to be trained to react differently to inappropriate behavior, and the worst reaction, though perhaps natural, is to become angry or frustrated with the child.
"Our automatic reaction is, 'Why are you doing that? Stop doing that' and that's not working," she said. But the attention to the bad behavior actually reinforces it.
Scott said many teachers rely on "old school" punitive methods of discipline, most of which don't work with special needs students, particularly those with autism who may miss social cues.
"You can't punish these kids into behaving well," he said.
Inclusion often is not the cheapest approach to teaching special needs children, Scott said, and with less and less money going to public schools in Florida, it can be difficult to provide the assistance they need.
"A lot of kids really need more and better teaching and that's often hard to pull off," he said.
Mother calls for training
In St. Lucie, the school district's philosophy is one of positive discipline rather than negative, said Deborah Iseman, executive director of professional development.
Both the union and the school district receive frequent requests from teachers for additional training in classroom management, school officials said. One class the union offers, Managing Anti-Social Behavior, always has a waiting list, Rodriguez said.
Eric Graff, who occasionally had Alex in his class at Morningside, said he believes school and state officials may finally be recognizing the need for more teacher training.
"I think the more education we get, the better it is for us," he said. "I don't have a problem saying I don't have all the answers for each child."
With little training or improper placement, both teacher and child may be at risk.
A kindergartner detached the retina of a teacher at Garden City Elementary in Fort Pierce last year, according to police reports. And the year before, a classroom aide at Garden City was fired after she allegedly fractured the arm of an 8-year-old disabled child by improperly restraining him.
Barton, who is searching for a new school for Alex, said such incidents point to a need for greater understanding about disabilities and better use of resources.
She said many teachers she speaks to want additional training, but have little time or opportunity.
"They make it impossible for teachers and impossible for students," she said.
Wednesday, January 14, 2009
Soaring autism rates in California not an artifact
NEW YORK (Reuters Health) – The increasing number of autism cases seen in California since the 1990s is in large part real, not simply the result of changes in diagnostic criteria or in how autism cases are counted, new research suggests.
This study is the first to assess whether the autism trends in California might be explained by changes in age at diagnosis or by inclusion of milder cases, Dr. Irva Hertz-Picciotto and Dr. Lora Delwiche, from the University of California, Davis, note.
Using data from the California Department of Development Services, the researchers found that autism rates among children aged 5 years or younger rose steadily from 0.8 per 10,000 children born in California in 1990 to 11.2 per 10,000 children born in 2006.
The cumulative incidence per 10,000 births climbed from 6.2 in 1990 to 42.5 in 2001.
The proportion of cases that were diagnosed by 5 years of age rose only slightly from 54 percent to 61 percent for 1990 to 1996 births, according to a report in the January issue of Epidemiology.
A change in the age at diagnosis could explain 12 percent of the increase in autism rates, while inclusion of milder cases could explain 56 percent.
"With evidence of a leveling off, the possibility of a true increase in (autism) incidence deserves serious consideration," the investigators emphasize.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Hertz-Picciotto added in a statement.
SOURCE: Epidemiology, January 2009.
This study is the first to assess whether the autism trends in California might be explained by changes in age at diagnosis or by inclusion of milder cases, Dr. Irva Hertz-Picciotto and Dr. Lora Delwiche, from the University of California, Davis, note.
Using data from the California Department of Development Services, the researchers found that autism rates among children aged 5 years or younger rose steadily from 0.8 per 10,000 children born in California in 1990 to 11.2 per 10,000 children born in 2006.
The cumulative incidence per 10,000 births climbed from 6.2 in 1990 to 42.5 in 2001.
The proportion of cases that were diagnosed by 5 years of age rose only slightly from 54 percent to 61 percent for 1990 to 1996 births, according to a report in the January issue of Epidemiology.
A change in the age at diagnosis could explain 12 percent of the increase in autism rates, while inclusion of milder cases could explain 56 percent.
"With evidence of a leveling off, the possibility of a true increase in (autism) incidence deserves serious consideration," the investigators emphasize.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," Hertz-Picciotto added in a statement.
SOURCE: Epidemiology, January 2009.
New Study: Autism Linked to Environment
By Marla Cone
California's sevenfold increase in autism cannot be explained by changes in doctors' diagnoses and most likely is due to environmental exposures, University of California scientists reported Thursday.
The scientists who authored the new study advocate a nationwide shift in autism research to focus on potential factors in the environment that babies and fetuses are exposed to, including pesticides, viruses and chemicals in household products.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis who led the study.
Throughout the nation, the numbers of autistic children have increased dramatically over the past 15 years. Autistic children have problems communicating and interacting socially; the symptoms usually are evident by the time the child is a toddler.
More than 3,000 new cases of autism were reported in California in 2006, compared with 205 in 1990. In 1990, 6.2 of every 10,000 children born in the state were diagnosed with autism by the age of five, compared with 42.5 in 10,000 born in 2001, according to the study, published in the journal Epidemiology. The numbers have continued to rise since then.
To nail down the causes, scientists must unravel a mystery: What in the environment has changed since the early 1990s that could account for such an enormous rise in the brain disorder?
For years, many medical officials have suspected that the trend is artificial--due to changes in diagnoses or migration patterns rather than a real rise in the disorder.
But the new study concludes that those factors cannot explain most of the increase in autism.
Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.
The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.
Dr. Bernard Weiss, a professor of environmental medicine and pediatrics at the University of Rochester Medical Center who was not involved in the new research, said the autism rate reported in the study "seems astonishing." He agreed that environmental causes should be getting more attention.
The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age
"A shift toward younger age at diagnosis was clear but not huge," the report says.
Also, a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase.
Combined, Hertz-Picciotto said those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.
That means the rest is unexplained and likely caused by something that pregnant women or infants are exposed to, or a combination of genetic and environmental factors.
"There's genetics and there's environment. And genetics don't change in such short periods of time," Hertz-Picciotto, a researcher at UC Davis' M.I.N.D. Institute, a leading autism research facility, said in an interview Thursday.
Many researchers have theorized that a pregnant woman's exposure to chemical pollutants, particularly metals and pesticides, could be altering a developing baby's brain structure, triggering autism.
Many parent groups believe that childhood vaccines are responsible because they contained thimerosal, a mercury compound used as a preservative. But thimerosal was removed from most vaccines in 1999, and autism rates are still rising.
Dozens of chemicals in the environment are neurodevelopmental toxins, which means they alter how the brain grows. Mercury, polychlorinated biphenyls, lead, brominated flame retardants and pesticides are examples.
While exposure to some--such as PCBs--has declined in recent decades, others--including flame retardants used in furniture and electronics, and pyrethroid insecticides--have increased.
Mothers of autistic children were twice as likely to use pet flea shampoos, which contain organophosphates or pyrethroids, according to one study that has not yet been published. Another new study has found a link between autism and phthalates, which are compounds used in vinyl and cosmetics. Other household products such as antibacterial soaps also could have ingredients that harm the brain by changing immune systems, Hertz-Picciotto said.
In addition, fetuses and infants might be exposed to a fairly new infectious microbe, such as a virus or bacterium, that could be altering the immune system or brain structure. In the 1970s, autism rates increased due to the rubella virus.
The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."
"I don't think there's going to be one smoking gun in this autism problem," she said. "It's such a big world out there and we know so little at this point."
But she added, scientists expect to develop "quite a few leads in a year or so."
The UC Davis researchers have been studying autistic children's exposure to flame retardants and pesticides to see if there is a connection. The results have not yet been published.
"If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible," Hertz-Picciotto said.
Funding for studying genetic causes of autism is 10 to 20 times higher than funding for environmental causes, she said. "It's very off-balance," she said.
Weiss agreed, saying that "excessive emphasis has been placed on genetics as a cause. "The advances in molecular genetics have tended to obscure the principle that genes are always acting in and on a particular environment. This article, I think, will restore some balance to our thinking," he said.
Research links soaring incidence of the mysterious neurological disorder to fetal and infant exposure to pesticides, viruses, household chemicals
Some issues related to whether the increase is merely a reporting artifact remain unresolved. There could be other, unknown issues involving diagnosis and reporting, scientists say.
The surge in autism is similar to the rise in childhood asthma, which has reached epidemic proportions for unexplained reasons. Medical officials originally thought that, too, might be due to increased reporting of the disease, but now they acknowledge that many more children are asthmatic than in the past. Experts suspect that environmental pollutants or immune changes could be responsible.
Autism has serious effects, not just on an individual child's health but on education, health care and the economy "Autism incidence in California shows no sign yet of plateauing," Hertz-Picciotto and Delwiche said in their study.
California's sevenfold increase in autism cannot be explained by changes in doctors' diagnoses and most likely is due to environmental exposures, University of California scientists reported Thursday.
The scientists who authored the new study advocate a nationwide shift in autism research to focus on potential factors in the environment that babies and fetuses are exposed to, including pesticides, viruses and chemicals in household products.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis who led the study.
Throughout the nation, the numbers of autistic children have increased dramatically over the past 15 years. Autistic children have problems communicating and interacting socially; the symptoms usually are evident by the time the child is a toddler.
More than 3,000 new cases of autism were reported in California in 2006, compared with 205 in 1990. In 1990, 6.2 of every 10,000 children born in the state were diagnosed with autism by the age of five, compared with 42.5 in 10,000 born in 2001, according to the study, published in the journal Epidemiology. The numbers have continued to rise since then.
To nail down the causes, scientists must unravel a mystery: What in the environment has changed since the early 1990s that could account for such an enormous rise in the brain disorder?
For years, many medical officials have suspected that the trend is artificial--due to changes in diagnoses or migration patterns rather than a real rise in the disorder.
But the new study concludes that those factors cannot explain most of the increase in autism.
Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.
The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.
Dr. Bernard Weiss, a professor of environmental medicine and pediatrics at the University of Rochester Medical Center who was not involved in the new research, said the autism rate reported in the study "seems astonishing." He agreed that environmental causes should be getting more attention.
The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age
"A shift toward younger age at diagnosis was clear but not huge," the report says.
Also, a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase.
Combined, Hertz-Picciotto said those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.
That means the rest is unexplained and likely caused by something that pregnant women or infants are exposed to, or a combination of genetic and environmental factors.
"There's genetics and there's environment. And genetics don't change in such short periods of time," Hertz-Picciotto, a researcher at UC Davis' M.I.N.D. Institute, a leading autism research facility, said in an interview Thursday.
Many researchers have theorized that a pregnant woman's exposure to chemical pollutants, particularly metals and pesticides, could be altering a developing baby's brain structure, triggering autism.
Many parent groups believe that childhood vaccines are responsible because they contained thimerosal, a mercury compound used as a preservative. But thimerosal was removed from most vaccines in 1999, and autism rates are still rising.
Dozens of chemicals in the environment are neurodevelopmental toxins, which means they alter how the brain grows. Mercury, polychlorinated biphenyls, lead, brominated flame retardants and pesticides are examples.
While exposure to some--such as PCBs--has declined in recent decades, others--including flame retardants used in furniture and electronics, and pyrethroid insecticides--have increased.
Mothers of autistic children were twice as likely to use pet flea shampoos, which contain organophosphates or pyrethroids, according to one study that has not yet been published. Another new study has found a link between autism and phthalates, which are compounds used in vinyl and cosmetics. Other household products such as antibacterial soaps also could have ingredients that harm the brain by changing immune systems, Hertz-Picciotto said.
In addition, fetuses and infants might be exposed to a fairly new infectious microbe, such as a virus or bacterium, that could be altering the immune system or brain structure. In the 1970s, autism rates increased due to the rubella virus.
The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."
"I don't think there's going to be one smoking gun in this autism problem," she said. "It's such a big world out there and we know so little at this point."
But she added, scientists expect to develop "quite a few leads in a year or so."
The UC Davis researchers have been studying autistic children's exposure to flame retardants and pesticides to see if there is a connection. The results have not yet been published.
"If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible," Hertz-Picciotto said.
Funding for studying genetic causes of autism is 10 to 20 times higher than funding for environmental causes, she said. "It's very off-balance," she said.
Weiss agreed, saying that "excessive emphasis has been placed on genetics as a cause. "The advances in molecular genetics have tended to obscure the principle that genes are always acting in and on a particular environment. This article, I think, will restore some balance to our thinking," he said.
Research links soaring incidence of the mysterious neurological disorder to fetal and infant exposure to pesticides, viruses, household chemicals
Some issues related to whether the increase is merely a reporting artifact remain unresolved. There could be other, unknown issues involving diagnosis and reporting, scientists say.
The surge in autism is similar to the rise in childhood asthma, which has reached epidemic proportions for unexplained reasons. Medical officials originally thought that, too, might be due to increased reporting of the disease, but now they acknowledge that many more children are asthmatic than in the past. Experts suspect that environmental pollutants or immune changes could be responsible.
Autism has serious effects, not just on an individual child's health but on education, health care and the economy "Autism incidence in California shows no sign yet of plateauing," Hertz-Picciotto and Delwiche said in their study.
Testosterone linked to autism
“A prenatal screening test for autism comes closer today,” says The Guardian. It reports that scientists have found links between high testosterone levels in the womb and autistic traits in children. It says this could lead to tests that can identify autistic children before birth.
The findings are based on a scientific study of 235 children aged between eight and 10, whose mothers had amniocentesis, a test analysing fluid taken from around a foetus. None of these children were autistic, but those exposed to higher testosterone levels showed higher levels of “autistic traits”, such as poor verbal and social skills.
While this research gives us further insight into the biology behind autistic-like traits, it is important to remember that none of the children in this study were autistic. The researchers must now confirm that their findings apply to children with the condition. Should this prove to be the case, the ethical issues surrounding prenatal screening for risk of autism would need to be debated before any testing could be introduced.
Where did the story come from? This research was conducted by Dr Bonnie Auyeung and colleagues from University of Cambridge, two Cambridge hospitals, and a university in the US. It was funded by the Nancy Lurie-Marks Family Foundation and the Medical Research Council. The study was published in the peer-reviewed British Journal of Psychology.
What kind of scientific study was this?
This was a cohort study looking at the relationship between levels of the male hormone testosterone in the womb and levels of autistic traits in children.
Studies have suggested that exposure to testosterone in the womb may affect some aspects of cognition and behaviour that differ between males and females. Autism is more common among males, and some people have suggested that the condition is an extreme form of typical male traits.
The researchers identified records from 950 women who had routine amniocentesis in the Cambridge region between 1996 and 2001. The children from these pregnancies would have been aged six to 10 years old at the time of the study.
The researchers excluded certain types of pregnancy from the study. These included pregnancies in which a chromosomal abnormality was identified, pregnancies that ended in termination or miscarriage, pregnancies where there were significant medical problems after birth, or the mother was carrying twins. Cases were also excluded where there was incomplete information, or if medical practitioners felt that contacting the family would be inappropriate.
The remaining 452 women were sent two standard questionnaires, which assessed their children’s levels of autistic traits. These were the Childhood Autism Spectrum Quotient (AQ-Child) and the Childhood Autistic Spectrum Test (CAST).
Of the 452 women contacted, 235 completed and returned both questionnaires and were included in this study. The researchers measured IQ using a standard test in a subgroup of 74 children whose mothers agreed to bring them in for cognitive testing.
The researchers then looked at the levels of testosterone found in the amniotic fluid taken during amniocentesis. The researchers used statistical tests to assess whether there was any relationship between testosterone levels in the womb, and the children’s IQ and levels of autistic traits.
The researchers also looked at girls and boys separately to see if gender had any effect. The researchers also took into account various factors that might affect their results, such as the mother's age, duration of the pregnancies when the amniocentesis was carried out (usually between 14 and 22 weeks), parental education, having an older sibling, and the child's age at the time of the questionnaire.
What were the results of the study? The researchers found that, as expected, the amniotic fluid in pregnancies carrying males had higher testosterone levels than in pregnancies carrying girls. At age six to 10 boys, showed higher levels of autistic traits than girls.
Children whose amniotic fluid contained higher levels of testosterone had stronger autistic traits, as indicated by higher scores on the CAST and AQ-Child questionnaires. The researchers found similar results if they looked at boys and girls separately on the AQ-Child measure, but on the CAST measure, foetal testosterone levels were only associated with levels of autistic traits in boys, not girls.
There was no relationship between IQ and testosterone levels or level of autistic traits in the subset of children who were tested for IQ.
What interpretations did the researchers draw from these results? The researchers concluded that their findings fit with the theory that exposure to testosterone in the womb is related to higher levels of autistic traits.
They add that they need to repeat their study in a much larger sample to see if these findings extend to children with autism.
What does the NHS Knowledge Service make of this study? This study indicates an association between higher levels of testosterone in the womb and levels of autistic traits at age six to 10 years.
There are a number of points to consider:
* As the authors acknowledge, the association between testosterone levels and autistic traits does not necessarily mean that high levels of testosterone in the womb directly “cause” an increase in autistic traits. Other factors could have an effect. For example, genetic variations might affect both the levels of testosterone in the womb and levels of autistic traits.
* The samples of amniotic fluid tested were taken at different points in pregnancies, and at different times of day. As testosterone levels are likely to fluctuate over time, it is unclear whether one measurement of testosterone is representative of the foetus’ overall exposure to testosterone.
* Women who undergo routine amniocentesis are often older than the general childbearing population. The average age of women in this study was 35 years old. Although the researchers took maternal age into account, these results may not be representative of younger pregnant women.
* None of the children in this study had autism, therefore the authors note that “caution needs to be taken when extrapolating these results to individuals with a formal diagnosis of [autistic spectrum conditions]”. They report that they are currently working on obtaining a larger sample so that they can determine whether their results apply to children with autistic spectrum conditions.
* The current sample of 235 children was still relatively small. When considering that there was only a 52% response rate among those who were sent the questionnaires, the children may not be representative of the whole group. For example, some parents who had concerns about their child’s development may have felt less inclined to answer a questionnaire about it than those who were happy with their child’s level of development.
Although many newspapers describe the potential for a prenatal test for autism, the authors did not aim to develop such a test. Instead, their aim was to further understand how testosterone may affect development of autistic traits.
Even if such a test were possible, it is important to note that this would be a screening test and not a definitive diagnostic test, i.e. it would identify foetuses more or less likely to develop autism rather than identify those who would definitely go on to develop autism.
Screening tests are rarely 100% accurate, and the many ethical issues surrounding prenatal screening for risk of autism would need to be debated before any test could be offered. Also, there are currently no ways to prevent a child from developing autism. Therefore, it is unclear whether identifying children at greater risk of autism would benefit the child or the parents.
The findings are based on a scientific study of 235 children aged between eight and 10, whose mothers had amniocentesis, a test analysing fluid taken from around a foetus. None of these children were autistic, but those exposed to higher testosterone levels showed higher levels of “autistic traits”, such as poor verbal and social skills.
While this research gives us further insight into the biology behind autistic-like traits, it is important to remember that none of the children in this study were autistic. The researchers must now confirm that their findings apply to children with the condition. Should this prove to be the case, the ethical issues surrounding prenatal screening for risk of autism would need to be debated before any testing could be introduced.
Where did the story come from? This research was conducted by Dr Bonnie Auyeung and colleagues from University of Cambridge, two Cambridge hospitals, and a university in the US. It was funded by the Nancy Lurie-Marks Family Foundation and the Medical Research Council. The study was published in the peer-reviewed British Journal of Psychology.
What kind of scientific study was this?
This was a cohort study looking at the relationship between levels of the male hormone testosterone in the womb and levels of autistic traits in children.
Studies have suggested that exposure to testosterone in the womb may affect some aspects of cognition and behaviour that differ between males and females. Autism is more common among males, and some people have suggested that the condition is an extreme form of typical male traits.
The researchers identified records from 950 women who had routine amniocentesis in the Cambridge region between 1996 and 2001. The children from these pregnancies would have been aged six to 10 years old at the time of the study.
The researchers excluded certain types of pregnancy from the study. These included pregnancies in which a chromosomal abnormality was identified, pregnancies that ended in termination or miscarriage, pregnancies where there were significant medical problems after birth, or the mother was carrying twins. Cases were also excluded where there was incomplete information, or if medical practitioners felt that contacting the family would be inappropriate.
The remaining 452 women were sent two standard questionnaires, which assessed their children’s levels of autistic traits. These were the Childhood Autism Spectrum Quotient (AQ-Child) and the Childhood Autistic Spectrum Test (CAST).
Of the 452 women contacted, 235 completed and returned both questionnaires and were included in this study. The researchers measured IQ using a standard test in a subgroup of 74 children whose mothers agreed to bring them in for cognitive testing.
The researchers then looked at the levels of testosterone found in the amniotic fluid taken during amniocentesis. The researchers used statistical tests to assess whether there was any relationship between testosterone levels in the womb, and the children’s IQ and levels of autistic traits.
The researchers also looked at girls and boys separately to see if gender had any effect. The researchers also took into account various factors that might affect their results, such as the mother's age, duration of the pregnancies when the amniocentesis was carried out (usually between 14 and 22 weeks), parental education, having an older sibling, and the child's age at the time of the questionnaire.
What were the results of the study? The researchers found that, as expected, the amniotic fluid in pregnancies carrying males had higher testosterone levels than in pregnancies carrying girls. At age six to 10 boys, showed higher levels of autistic traits than girls.
Children whose amniotic fluid contained higher levels of testosterone had stronger autistic traits, as indicated by higher scores on the CAST and AQ-Child questionnaires. The researchers found similar results if they looked at boys and girls separately on the AQ-Child measure, but on the CAST measure, foetal testosterone levels were only associated with levels of autistic traits in boys, not girls.
There was no relationship between IQ and testosterone levels or level of autistic traits in the subset of children who were tested for IQ.
What interpretations did the researchers draw from these results? The researchers concluded that their findings fit with the theory that exposure to testosterone in the womb is related to higher levels of autistic traits.
They add that they need to repeat their study in a much larger sample to see if these findings extend to children with autism.
What does the NHS Knowledge Service make of this study? This study indicates an association between higher levels of testosterone in the womb and levels of autistic traits at age six to 10 years.
There are a number of points to consider:
* As the authors acknowledge, the association between testosterone levels and autistic traits does not necessarily mean that high levels of testosterone in the womb directly “cause” an increase in autistic traits. Other factors could have an effect. For example, genetic variations might affect both the levels of testosterone in the womb and levels of autistic traits.
* The samples of amniotic fluid tested were taken at different points in pregnancies, and at different times of day. As testosterone levels are likely to fluctuate over time, it is unclear whether one measurement of testosterone is representative of the foetus’ overall exposure to testosterone.
* Women who undergo routine amniocentesis are often older than the general childbearing population. The average age of women in this study was 35 years old. Although the researchers took maternal age into account, these results may not be representative of younger pregnant women.
* None of the children in this study had autism, therefore the authors note that “caution needs to be taken when extrapolating these results to individuals with a formal diagnosis of [autistic spectrum conditions]”. They report that they are currently working on obtaining a larger sample so that they can determine whether their results apply to children with autistic spectrum conditions.
* The current sample of 235 children was still relatively small. When considering that there was only a 52% response rate among those who were sent the questionnaires, the children may not be representative of the whole group. For example, some parents who had concerns about their child’s development may have felt less inclined to answer a questionnaire about it than those who were happy with their child’s level of development.
Although many newspapers describe the potential for a prenatal test for autism, the authors did not aim to develop such a test. Instead, their aim was to further understand how testosterone may affect development of autistic traits.
Even if such a test were possible, it is important to note that this would be a screening test and not a definitive diagnostic test, i.e. it would identify foetuses more or less likely to develop autism rather than identify those who would definitely go on to develop autism.
Screening tests are rarely 100% accurate, and the many ethical issues surrounding prenatal screening for risk of autism would need to be debated before any test could be offered. Also, there are currently no ways to prevent a child from developing autism. Therefore, it is unclear whether identifying children at greater risk of autism would benefit the child or the parents.
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