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NEWS Utah and New Jersey Swamped with Autism, 1 in 12 Boys CDC: 1 in 88 Kids Has Autism Larger Study; Docs Debate Cause By Lawrence Borges, M.D., ABC News Medical Unit One in 88 children is diagnosed with an autism spectrum disorder, or ASD, by age 8, according to a study released today by the U.S. Centers for Disease Control and Prevention -- a rate that has risen far above the 2006 estimate of 1 in 110. But experts remain locked in debate about whether these numbers tell the whole story. The CDC report, which analyzed data from 2008, indicates a 23 percent rise in diagnoses of ASDs over a two-year period. The news could be most alarming for boys. The study reports that on average 1 in 54 boys was diagnosed with autism, compared to only 1 in 252 girls. But what this rise actually means is still a mystery. Some doctors contacted by ABC News believe a broader definition of autism has contributed to rising rates. "I think it has to do with changing diagnostic criteria, including mine over the years which have made me label many more children as being on the autism spectrum than say 10-20 years ago," said Dr. Isabelle Rapin, professor of pediatrics and neurology at the Albert Einstein College of Medicine. "Not only physicians, but parents, teachers, therapists and the public are much more aware of the symptoms of autism, and I suspect some may apply the diagnosis based on one symptom, which is inadequate." Dr. Lisa Shulman, also at the Albert Einstein College of Medicine, echoed this concern. "Over the years, children with autistic disorder remain a relatively small group in our center," said Shulman, director of Infant and Toddler Services at Einstein and an associate professor of pediatrics. "It is the group of children with milder social-communicative impairment and without a large array of mannerisms and atypical interests consistent with an ASD diagnosis that has increased significantly." The data was collected by The Autism and Developmental Disabilities Monitoring network, an organization funded by the CDC to track autism rates. For this report, the ADDM reviewed medical records of 8-year-old children from 14 different areas across the country. The study focused specifically on 8-year-olds because most autism spectrum diagnoses are made by the time a child reaches their eighth birthday. The signs of autism are often seen much earlier, however. Some experts believe that the first hints of abnormal behavior can be seen as early as 6 to 12 months. "If parents suspect something is wrong with their child's development, or that their child is losing skills, they should talk to their pediatrician or another developmental expert," said Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Md., in a news release. Landa has published a list of 10 infant behaviors to watch for that may herald a developmental problem. Still, experts say that parents need not start analyzing their babies just yet. According to the CDC, a child should only be diagnosed with an Autism Spectrum Disorder (ASD) if they meet criteria for one of three diseases outlined in The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, commonly referred to as the DSM-IV. These are Autistic disorder, Pervasive developmental disorder -- not otherwise specified, or Asperger disorder. Generally, the CDC describes them as, "a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior." The CDC has also published extended definitions for these disorders online. A proposed change for the upcoming fifth edition of the DSM would include Asperger disorder as a sub-category of Autistic disorder. It is not known how this change might affect autism reporting in the future, but research is under way to answer this question. + Read more. + Read CDC Report Finds 1 In 49 Children In NJ Identified With Autism here. + See NIMH Commentary below.
Court Ruling Opens Door to Therapy For Autistic Florida Children on Medicaid The therapy costs about $2,000 a week, but will make thousands of kids with autism productive citizens, experts say By Willard Shepard NBC Miami A 6-year-old autistic boy and his mother have won a federal court battle with the state of Florida that opens the door for children on Medicaid to get therapy that could make a crucial difference in their lives. Until this week Florida’s rules did not allow kids without insurance who had autism to get therapy like the “applied behavioral analysis treatment” that Karl Gonzales received on Wednesday. “We are teaching them the fundamental skills necessary so they can access a typical education in a regular classroom, so they can interact with their peers,” said Alex Lorenzo, who worked with Karl, 6, at the office of the Legal Services of Greater Miami just north of downtown. Karl and two other children won a lawsuit against Florida’s rules preventing the therapy for kids with Medicaid benefits. Judge Joan Lenard ordered the state to provide, fund and authorize applied behavioral analysis treatment. “Everyone in the courtroom started crying,” said Miriam Harmatz, who represented Karl along with Neil Kodsi and attorneys from the Legal Services of Greater Miami and Florida Legal Services. Karl’s mother, Ileana Gonzales, said she is “really, really happy because he’s my kid." The therapy costs about $2,000 a week, but it will make Karl and 8,000 other Florida kids with autism productive citizens, experts say. Paying for the treatments now will save taxpayers money down the road, Harmatz said. “No more children in Florida (are) going to be lost. The kids on Medicaid, poor kids, (are) going to have the same effective treatment as kids with insurance,” she said. “We the taxpayers are going to save a tremendous amount of money since these kids are eventually going to be able to be paying taxes themselves." Lenard gave the state until Monday to notify all clinics and doctors who provide such treatment about her order. The state says it is evaluating the ruling and has not made a decision yet about a possible appeal. • • • DSM Committee Standing Firm On Autism Changes By Michelle Diament disabilityscoop.com Members of the committee tasked with updating the diagnostic criteria for autism appear to be digging in as critics worry that proposed changes will strip many of their diagnosis. In a commentary released this week, members of the American Psychiatric Association panel charged with revising the autism definition appearing in the forthcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, defended the changes they’re proposing. Specifically the work group has recommended that several labels including Asperger’s syndrome and pervasive developmental disorder, not otherwise specified be folded into an umbrella diagnosis of “autism spectrum disorder." However, many in the autism community became alarmed about the changes in January when a group of Yale University researchers reported that an analysis they conducted found that a significant number of people currently diagnosed with autism could be left out under the new criteria. In response, thousands signed an online petition asking the American Psychiatric Association to reconsider, as parents and advocates worried that the diagnostic changes could leave many without needed services. Nonetheless, the committee continues to defend its proposal and in a commentary appearing in the April issue of the Journal of the American Academy of Child & Adolescent Psychiatry the group criticized the methods used in the analysis released early this year. Specifically, the committee faults the research for relying on data collected in the early 1990s and said that the findings “justify neither alarming headlines nor dramatic conclusions." Any change to the autism definition in the DSM could have huge implications. The book is relied on by everyone from mental health professionals to researchers and insurers. The American Psychiatric Association, which publishes the DSM, says that preliminary results from field tests it conducted of the proposed changes are finding the criteria to be “both sensitive and specific." The organization has agreed, however, to open up an additional public comment period on the issue this spring. “We remain open to any concerns the academic and advocacy communities might have, but we strongly support the decisions that these leading researchers and clinicians have made,” said David Kupfer, chair of the DSM-5 Task Force, in a statement this week. “The proposed ASD criteria are backed by the scientific evidence." The fifth edition of the DSM is expected to be published in May 2013. • • • Annual Cost Of Autism Has More Than Tripled - $126 Billion US And £34 Billion In The UK sciencecodex.com
New York, N.Y. - Autism Speaks today announced preliminary results of
new research that estimates autism costs society a staggering $126
billion per year (U.S.) - a number that has more than tripled since
2006, and annually in the U.K. has reached more than £34 billion
(equivalent to $54 billion U.S.). The costs of providing care for each
person with autism affected by intellectual disability through his or
her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4
million) in the U.K. The lifetime costs of caring for individuals who
are not impacted by intellectual disability are $1.4 million in the
U.S. and £917,000 in the U.K. (equivalent to $1.46 million). The
Autism Speaks-funded research, conducted by researchers Martin Knapp,
Ph.D., of the London School of Economics, and David Mandell, Sc.D., of
the University of Pennsylvania, will be presented at the international
conference "Investing in our Future: The Economic Costs of Autism,"
hosted by Goldman Sachs in collaboration with the Child Development
Centre and Autism Speaks, on March 31 in Hong Kong. Drs. Knapp and Mandell compiled information from recent studies of autism costs from multiple sources to calculate the current cost of autism associated with the current CDC-reported prevalence that 1:110 children are diagnosed with an autism spectrum disorder (ASD). The cost of autism continues to grow with the rise in prevalence. While the latest prevalence estimates in the U.S. and U.K. are comparable, the primary difference in total costs of autism in the U.S. and U.K. are due to differences in total country population (five times larger in the U.S. than the U.K.). The research team found that the cost of autism in the U.S. alone is greater than the entire Gross Domestic Product (GDP) of 139 countries around the world. + Read more. TREATMENT Seaside Granted Patent For Autism Treatment Method By Don Seiffert masshightech.com A U.S. patent for the method to improve the social and communication functions in autism was granted to Seaside Therapeutics, Inc., the company announced today. The United States Patent and Trademark Office (USPTO) granted patent 8,143,311, titled “Methods of Treating Fragile X Syndrome and Autism,” which covers the use of Seaside’s lead product, STX209. The drug candidate is an oral selective gamma-aminobutyric acid-B (GABA-B) receptor agonist currently being studied in a Phase 2b study in autism spectrum disorders and two Phase 3 studies in fragile X syndrome, the most common cause of autism. “We believe STX209 has the potential to improve social function, which represents a new paradigm in the treatment of autism spectrum disorders and fragile X syndrome, and are truly excited about the prospect of helping patients and their families achieve an improved quality of life,” said Randy Carpenter, president and CEO of Seaside in a written statement. According to the company, recent studies show a deficient inhibitory neurotransmission in autism and fragile X syndrome, and STX209 has the potential to normalize this deficiency. Last June, the company announced the beginning of Phase 3 trials of STX209. In February, 2010, Seaside was issued a patent for a method of treating autism by blocking a certain receptor, the latest in several of the company’s related patents issued in the U.S., Europe and Canada. There is currently no approved drug for the treatment of Fragile X Syndrome, which affects 90,000 Americans, according to the company. Drugs currently in use focus on treating specific symptoms of autism such as anxiety, or improving and controlling behavior. • • • RESEARCH Arkansas Children's Hospital Gets $1.2M for Autism Research By: KARK 4 News Arkansas Children's Hospital (ACH) in Little Rock is getting a lot of money to pay for autism research. Today, the New York City-based Jane Botsford Johnson Foundation announced the donation of $1.2 million for a new study.
S. Jill James, PhD, director of the autism metabolic genomics
laboratory at the Arkansas Children's Hospital Research Institute
(ACHRI), will direct this research. With the funds, Dr. James will lead
three related studies, all aimed at understanding the
biochemical abnormalities in children with autism with the goal of
providing improved treatment options for these children. "Because the causes of autism are still not understood, we are working to identify biochemical markers that can give us clues into the underlying pathology of autism and help us to better understand the genetic and environmental risk factors associated with its development," said Dr. James. "We hope to translate these findings into clinical trials designed to treat both behavioral symptoms and medical problems associated with autism." Autism, a group of complex disorders of brain development, is a growing issue nationally and in Arkansas. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Gastrointestinal and immune system functions may also be affected. "While there will never be a 'one-size-fits-all' treatment for autism, targeted treatment trials based on individual laboratory results provide the best hope of determining which treatment is best for each child," said Dr. James. "We are very fortunate and grateful to have the support of the Johnson Foundation to help us with our work to improve the lives of children with autism and associated disorders." + Read more. • • • How Parents Are Changing The Course Of Autism Research Families push for deeper view of the developmental condition By Karen Weintraub Boston Globe On a recent Sunday, while Walt was baking gluten-free cookies, his mother had to remind him to check the recipe, put the eggs away, and close the refrigerator door. But he navigated the oven and timer just fine, and carefully used a spatula to shift the warm cookies from the baking sheet to the cooling rack. A few minutes later, after a quick, reassuring hug, the 16-year-old resumed the scrapbook he had started that morning, printing out pictures of his favorite Theodore Tugboats, trimming them to fit, and labeling each one. “I did so awesome," he said excitedly when he was done. He piled five of the now-cool cookies onto a plate, hurried off into another room, and crooned Christmas carols to calm himself down. Life with Walt alternates between moments of enthusiasm and anxiety, scowls and spontaneous hugs, typical teenage behavior and younger-than-his-age interests. Diagnosed with autism as a preschooler, Walt went through years of temper tantrums, diarrhea, skin scratching, unpredictable behaviors, and obvious physical pain. A few minutes spent at his airy Groton home reveal both that Walt, now 5 feet 6 inches tall, is not a typical teenager, and that he and his family - including two siblings not on the autism spectrum - manage his challenges with good nature, warmth, and lots of humor. Like many parents of autistic children, Walt’s mother, Sarah Connell has often been ahead of his doctors and caregivers in coming up with new ways to help him. But science and medicine are catching up with parents’ understanding of the condition, and a more nuanced view is slowly emerging: Autism is not just a brain problem. Many people with autism, which affects 1 in 110 American children, are profoundly unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles such as those that still occasionally plague Walt. And treating those symptoms can markedly improve the lives of autistic children, even if doesn’t cure them. “There’s a whole slew of other symptoms," besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. “A fair percentage have gastrointestinal problems, at least when they’re young, that may even outweigh the autism." Connell said their lives improved immeasurably when Walt stopped having diarrhea multiple times a day at age 10. “We found that treating his stomach reduced distressed and autistic behaviors," Connell said. Treating these physical symptoms might also improve core traits of autism, said Pat Levitt, director of the Zilkha Neurogenetic Institute at the University of Southern California, where those studies are just beginning to examine this question. People with autism were once thought to be intellectually disabled as well. Goldstein said he used to think that 70-80 percent of people on the spectrum had intellectual deficits; now he believes that number is closer to 5-10 percent, or even lower. Walt, who was recently able to sit through his first IQ test, has normal intelligence, even though he struggles to communicate all he knows. Every child with autism is different, Goldstein, Levitt, and others said, and so every treatment plan has to be. Andrew W. Zimmerman, director of clinical trials at the Massachusetts General Hospital’s Lurie Center for Autism, said he thinks researchers are just starting to distinguish among different types of autism, which should eventually suggest different treatments. + Read more. • • • PEOPLE Autistic Boy's Drowning Another Tragedy For Family Colony, Mo. (AP) - A tiny northeast Missouri town is grieving once again after a 6-year-old autistic boy was found dead in a pond - just months after his twin brother also drowned. The Quincy Herald-Whig reports that Christian Riley Baucom of Colony in Knox County was reported missing Tuesday afternoon. On Wednesday, Missouri State Highway Patrol divers found his body after a small pond was drained. Christian's brother drowned in a different pond in August. The two boys were living with a Mennonite family because their mother is in prison. Christian did not live in the home by the pond where his body was found, but was cared for by several different sisters of a Mennonite family. An investigation continues but authorities believe the drowning was an accident. • • • RESOURCES A Full Life With Autism New Book A Full Life With Autism: From Learning to Forming Relationships to Achieving Independence by Chantal and Jeremy Sicile-Kira, foreword by Temple Grandin, is now available for purchase online and in bookstores! A Full Life With Autism is a guide for helping our children on the spectrum lead meaningful and independent lives as they reach adulthood. In the next five years, hundreds of thousands of children with autism spectrum disorder will reach adulthood. And while diagnosis and treatment for children has improved in recent years, parents want to know: What happens to my child when I am no longer able to care for or assist him? Autism expert Chantal Sicile-Kira and her son Jeremy offer real advice about a host of difficult questions. Editorial Reviews Here are excerpts from a few of the reviews: This book will be in high demand among the parents of children with ASD and young adults with ASD. Jeremy's insights and Chantal's candid advice will prove invaluable to parents, teachers, and other support personnel. -Library Journal Reviews For readers already knowledgeable about autism and Asperger's syndrome, a hands-on approach to transitioning into adulthood...The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and "top ten tips for parents," written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum. A proactive method for raising an adult child with special needs. -Kirkus Reviews + Read more. • • • COMMENTARY Autism Prevalence: More Affected or More Detected? By Thomas Insel, Director National Institute of Mental Health Autism is always surprising. Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitoring (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected? These new data do not answer these questions. The CDC surveillance project focuses on 8-year-olds identified in 2008; that is, children who were born in 2000. By definition, autism begins before age 3, so a focus on 8-year-olds should capture anyone who was identified and still has a diagnosis. The prevalence numbers are based on a standardized assessment of descriptions of behaviors culled from administrative or health records from select communities, not on standardized diagnostic interviews in the general population. The strength of this approach is its wide reach, allowing a comparison across 14 states. The CDC reports a four-fold variation across sites. These new results, as with those from other records-based surveillance systems, do not answer questions related to why the identified prevalence of autism has changed over time. . Other research suggests a complicated picture. A total population study of all 7-12-year-olds in a town in South Korea (more than 55,000 children) used standardized diagnostic instruments for children who screened positive and reported a prevalence of 2.64 percent.1 That is 1 in 38 children! There is no reason to expect that this prevalence is unique to this community. To be sure, two-thirds of these children had never received a diagnosis of autism spectrum disorder (ASD), meaning that the identified prevalence was closer to 1 percent or one in 100, roughly the same prevalence reported in the United States. From this perspective, the increase reported by the CDC might mean we are better at detecting children who meet criteria for ASD, but potentially we still are only halfway to the actual prevalence in the general population. Indeed, the biggest increase in the CDC surveillance report was in Hispanic and African American children, groups which previously had low rates of detection. But can we be certain that more children are not affected? Data from the Developmental Disability Services registry in California demonstrates a 12-fold increase in the number of children receiving services for autism over the past 20 years, with a continuing rise recently. But these data, while dramatic, cannot rule out increased use of the diagnosis. Bearman and colleagues who have studied the California trends suggest that only about 26 percent of this increase can be explained by diagnostic substitution, especially for the most severe cases — children with intellectual deficits — which may not have been identified as autism in an earlier era. Another fraction can be attributed to better ascertainment or detection especially for children at the less severe end of the spectrum. Together these factors explain only a part of the linear increase observed in the California registry. In the absence of other explanations they and others suggest that a real increase is quite likely. + Read more. Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.
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Vol.
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