Autism Speaks applauds the consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal (GI) disorders in children with autism spectrum disorders (ASD) released online in Pediatrics as one step in advancing physician awareness of unique challenges in the medical management of children with autism. "We are pleased to see the publication of these consensus recommendations. Autism Speaks' current efforts will take this further by creating evidence-based guidelines for physicians. The goal is to develop a comprehensive care model that will guide physicians in addressing a wide range of medical issues, including GI problems, that many individuals with autism suffer from," commented Geraldine Dawson, Ph.D., Autism Speaks chief science officer.
The two reports published today present outcomes of a meeting held in May 2008, sponsored by the Autism Forum, in which working groups participating in the meeting reviewed current evidence on the evaluation and treatment of GI disorders specifically for children with autism. The 2008 meeting from which these consensus recommendations were derived recognized that health care practitioners severely lack solid information to guide care of children with autism and GI problems and there is a need for more research data, including genetic research, as a prerequisite to develop evidence-based guidelines specific to autism.
"The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches," reacted Dr. Dawson. "Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks' Autism Treatment Network (ATN)."
Dan Coury, M.D., ATN medical director, commented, "We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines." In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. "Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians," added Dr. Dawson.
The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.
In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, "The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN's on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD."
Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there's not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) - the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.
Friday, January 22, 2010
Tuesday, December 1, 2009
Early intervention aids children with autism: study
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 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."
"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 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."
Thursday, November 12, 2009
Children With Autism More Likely To Have Handwriting Problems
Children with autism may have lower quality handwriting and trouble forming letters compared to children without autism, according to a study published in the November 10, 2009, print issue of Neurology®, the medical journal of the American Academy of Neurology.
The study included 28 children between the ages of eight and 13. Half of the children had autism spectrum disorder. The other half had no developmental, psychiatric or brain disorders. All of the children scored within the normal range for perceptual reasoning on an IQ test.
The children were given the Minnesota Handwriting Assessment Test, which uses a scrambled sentence to eliminate any speed advantage for more fluent readers. The sentence used on the test was "the brown jumped lazy fox quick dogs over." Participants were asked to copy the words in the sentence, making the letters the same size and shape as the sample using their best handwriting. The handwriting was scored based on five categories: legibility, form, alignment, size and spacing. The children's motor skills, including balance and timed movements, were also examined and given a rating.
The research found that half of the children with autism earned less than 80 percent of the total possible points on the handwriting assessment, compared to only one child in the group without autism. In addition, nine of the 14 children with autism scored below 80 percent on the form category of the handwriting assessment, compared to only two of the 14 children without autism.
"Our results suggest that therapies targeting motor skills may help improve handwriting in children with autism, which is important for success in school and building self-esteem," said study author Amy Bastian, PhD, of the Kennedy Krieger Institute and Johns Hopkins School of Medicine in Baltimore, MD. "Such therapies could include training of letter formation and general training of fine motor control to help improve the quality of their writing."
While overall quality of handwriting was worse in children with autism spectrum disorders, they were still able to align, space and size their letters just as well as children without autism.
The study included 28 children between the ages of eight and 13. Half of the children had autism spectrum disorder. The other half had no developmental, psychiatric or brain disorders. All of the children scored within the normal range for perceptual reasoning on an IQ test.
The children were given the Minnesota Handwriting Assessment Test, which uses a scrambled sentence to eliminate any speed advantage for more fluent readers. The sentence used on the test was "the brown jumped lazy fox quick dogs over." Participants were asked to copy the words in the sentence, making the letters the same size and shape as the sample using their best handwriting. The handwriting was scored based on five categories: legibility, form, alignment, size and spacing. The children's motor skills, including balance and timed movements, were also examined and given a rating.
The research found that half of the children with autism earned less than 80 percent of the total possible points on the handwriting assessment, compared to only one child in the group without autism. In addition, nine of the 14 children with autism scored below 80 percent on the form category of the handwriting assessment, compared to only two of the 14 children without autism.
"Our results suggest that therapies targeting motor skills may help improve handwriting in children with autism, which is important for success in school and building self-esteem," said study author Amy Bastian, PhD, of the Kennedy Krieger Institute and Johns Hopkins School of Medicine in Baltimore, MD. "Such therapies could include training of letter formation and general training of fine motor control to help improve the quality of their writing."
While overall quality of handwriting was worse in children with autism spectrum disorders, they were still able to align, space and size their letters just as well as children without autism.
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.
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
One year later, Project Lifesaver still keeping people safe
It’s an all-too-common reality for some — a loved one with special needs wanders off.
Global Positioning System (GPS) technology is providing reassurance for dozens of families in Dane County — like the O’Leary family of McFarland.
Aidan O’Leary is an energetic, inquisitive 7-year-old. He also has a tendency to wander.
“He could hide in places, go into an empty car, go in someone’s garage,” said Lisa O’Leary, mother. “He would go with a stranger. We could be walking down the street and he slips out of my arm and he’d be in the parking lot and go right in front of a car.”
Aidan was diagnosed with autism at age 3. When his family heard about Project Lifesaver, they were one of the first to sign up. Aidan wears a one-ounce GPS tracker on his ankle, which emits a signal every second, 24 hours a day.
“From day one, he has not tried to fidget with the device, or try to get it off at all,” Lisa said. “It was basically like wearing another sock.”
Aidan’s parents check the gps battery battery twice a day, and enter it in a log book. They’re one of 26 families in Dane County who use Project Lifesaver — families dealing with autism, Alzheimer’s disease, and down syndrome.
“You’re keeping track of them 24 hours, you’re eyes are always on them, but somehow you turn your head and they can be gone,” Lisa said.
Aidan’s mother never stops worrying, she says, but if her son ever went missing, she’d know where to look.
“It’s so reassuring to know that if he’s lost, we can find him.”
Project Lifesaver is completely funded thru donations. Otherwise it would cost families $300 per year.
Global Positioning System (GPS) technology is providing reassurance for dozens of families in Dane County — like the O’Leary family of McFarland.
Aidan O’Leary is an energetic, inquisitive 7-year-old. He also has a tendency to wander.
“He could hide in places, go into an empty car, go in someone’s garage,” said Lisa O’Leary, mother. “He would go with a stranger. We could be walking down the street and he slips out of my arm and he’d be in the parking lot and go right in front of a car.”
Aidan was diagnosed with autism at age 3. When his family heard about Project Lifesaver, they were one of the first to sign up. Aidan wears a one-ounce GPS tracker on his ankle, which emits a signal every second, 24 hours a day.
“From day one, he has not tried to fidget with the device, or try to get it off at all,” Lisa said. “It was basically like wearing another sock.”
Aidan’s parents check the gps battery battery twice a day, and enter it in a log book. They’re one of 26 families in Dane County who use Project Lifesaver — families dealing with autism, Alzheimer’s disease, and down syndrome.
“You’re keeping track of them 24 hours, you’re eyes are always on them, but somehow you turn your head and they can be gone,” Lisa said.
Aidan’s mother never stops worrying, she says, but if her son ever went missing, she’d know where to look.
“It’s so reassuring to know that if he’s lost, we can find him.”
Project Lifesaver is completely funded thru donations. Otherwise it would cost families $300 per year.
Sunday, September 6, 2009
Autism group probes why children love Thomas the Tank Engine
The simple stories and clear facial expressions of the Thomas the Tank Engine characters have made them a favourite among children with autism, according to a study by the U.K. National Autistic Society.
Thomas the Tank Engine, written in 1943 by Rev. Wilbert Vere Awdry, is a perennial favourite among all the under-four set, especially for boys who love trains.
But it appears to have particular appeal to autistic children, with 58 per cent of parents in an April 2007 survey reporting that Thomas was the first children's character their child enjoyed.
Most of the children discovered Thomas & Friends through the television show based on the characters, but then moved on to Thomas toys, videos and books.
Among autistic children, who often have a narrow range of behaviours, Thomas-related play was often their favourite activity, with children repeatedly watching the videos and reenacting whole scenes, including dialogue, with the toys.
"Thomas & Friends is 100 per cent responsible for getting him talking. Thomas was his life," said one parent of a nine-year-old, according to the NAS survey.
About a third of parents reported their children were able to learn basic facial expressions from the characters, as all of Thomas's friends have easy-to-read expressions — they are either happy, sad or angry.
Children with autism often have trouble decoding human expressions.
"He definitely uses the train faces to distinguish between different emotions. Thomas has helped him to get into the world of not just language but also how people feel," said another parent.
Parents also believed the characters contributed to their children's learning of colours, numbers and language.
The gentle world of Thomas & Friends, in which characters behave predictably, helped to calm some autistic children, with 54 per cent of parents reporting the stories contributed to their child's sense of security.
Children with autism enjoyed the Thomas stories and characters up to two years longer than siblings who didn't have the disorder.
The survey was answered by 748 U.K. parents of children under 10 with autism, a developmental disability.
Thomas the Tank Engine stories have been voiced by Ringo Starr and George Carlin and a new version of the TV series will feature the voice of Pierce Brosnan.
Thomas the Tank Engine, written in 1943 by Rev. Wilbert Vere Awdry, is a perennial favourite among all the under-four set, especially for boys who love trains.
But it appears to have particular appeal to autistic children, with 58 per cent of parents in an April 2007 survey reporting that Thomas was the first children's character their child enjoyed.
Most of the children discovered Thomas & Friends through the television show based on the characters, but then moved on to Thomas toys, videos and books.
Among autistic children, who often have a narrow range of behaviours, Thomas-related play was often their favourite activity, with children repeatedly watching the videos and reenacting whole scenes, including dialogue, with the toys.
"Thomas & Friends is 100 per cent responsible for getting him talking. Thomas was his life," said one parent of a nine-year-old, according to the NAS survey.
About a third of parents reported their children were able to learn basic facial expressions from the characters, as all of Thomas's friends have easy-to-read expressions — they are either happy, sad or angry.
Children with autism often have trouble decoding human expressions.
"He definitely uses the train faces to distinguish between different emotions. Thomas has helped him to get into the world of not just language but also how people feel," said another parent.
Parents also believed the characters contributed to their children's learning of colours, numbers and language.
The gentle world of Thomas & Friends, in which characters behave predictably, helped to calm some autistic children, with 54 per cent of parents reporting the stories contributed to their child's sense of security.
Children with autism enjoyed the Thomas stories and characters up to two years longer than siblings who didn't have the disorder.
The survey was answered by 748 U.K. parents of children under 10 with autism, a developmental disability.
Thomas the Tank Engine stories have been voiced by Ringo Starr and George Carlin and a new version of the TV series will feature the voice of Pierce Brosnan.
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