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Monday, May 6, 2009 Reader Supported |
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PUBLIC HEALTH Autism in California Increases Twelvefold By Sandy Kleffman for the Contra Costa Times. is.gd/xkLZ California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals. The dramatic rise in autism has broad implications for California families, taxpayers and social service agencies. "This is a shocking recognition of the challenges we face, today and into the future," said Rick Rollens, the father of an autistic child and a co-founder of the Medical Investigation of Neurological Disorders Institute at UC Davis. From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services. That is a 1,148 percent increase. By contrast, the state's general population grew by 27 percent during that timeframe. Other disabilities saw much smaller growth rates. Regional center clients with mental retardation increased by 95 percent, cerebral palsy by 73 percent, and epilepsy by 66 percent. People who have autism now outnumber those with cerebral palsy in the state, and they will soon surpass those with epilepsy. Autism is a severe developmental disorder marked by communication difficulties, an adherence to routines and a lack of interest in socializing with others. No one knows what causes the disorder, but many experts now believe one or more environmental factors trigger autism in genetically susceptible children. The latest findings highlight the urgency in discovering a cause, Rollens said. He added that it is ironic that the report is being released shortly before the regional center system faces a $100 million budget cut beginning in July. This is the third major autism study produced by the state. The numbers understate the amount of autism in California, said Julia Mullen, deputy director of the community services and support division of the state Department of Developmental Services. The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates. The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger's syndrome and Rett's Disorder, are excluded from the statistics. In a finding with important ramifications for the future, the study notes that within the next five years, more than 4,000 teenagers who have autism will reach adulthood. They will be added to the 6,000 adults already in the regional center system. By 2018, the study estimates, the number of adults with autism will exceed 19,000. It is crucial, Rollens said, that the state develop the infrastructure to serve these families, despite the tight financial times. Mullen said her agency has developed guidelines on diagnosing autism and effective interventions. It also has placed autism specialists in each of the 21 regional centers to work with the community on approaches and programs, she said. The study reveals that the ratio of males to females who have autism continues to increase. Today, nearly five boys have the disorder for every one girl. The percentage of people who have both autism and mental retardation has dropped significantly, a trend that may provide clues for those trying to solve the autism puzzle. Rollens noted that the state does not have experience in dealing with thousands of adults who have autism, but will need to prepare for what is often a lifelong need for care. "The impact of what we see in these numbers is sobering," he said. + Read Report: www.dds.ca.gov/Autism/docs/AutismReport_2007.pdf DO SOMETHING ABOUT
AUTISM NOW
 . . . Read, then Forward the Schafer Autism Report. $35 for 1 year - or free! www.sarnet.org • • • TREATMENT Suicidal Behavior and Ideation and Antiepileptic Drugs Notice from the FDA. is.gd/xkpr AED class label changes Manufacturers of antiepileptic drugs (AEDs) or anticonvulsant drugs will update product labeling to include a warning about an increased risk of suicidal thoughts or actions and will develop a Medication Guide to help patients understand this risk. These changes affect all approved AEDs except those indicated only for short-term use. Drugs with updated labels The approved AEDs affected by these safety label changes are Carbatrol, Celontin, Depakene, Depakote ER, Depakote sprinkles, Depakote tablets, Dilantin, Equetro, Felbatol, Gabitril, Keppra, Keppra XR, Klonopin, Lamictal, Lyrica, Mysoline, Neurontin, Peganone, Stavzor, Tegretol, Tegretol XR, Topamax, Tranxene, Tridione, Trileptal, Zarontin, Zonegran, and generics. FDA approved updated labeling for these drugs on April 23, 2009. Drugs with Medication Guides New comprehensive Medication Guides were approved on April 23, 2009, for Lamictal, Lyrica, Topamax, Zonegran and Keppra. Comprehensive Medication Guides are being developed for the other drugs and should be available by the end of 2009. Advice for healthcare professionals Epilepsy and other illnesses for which antiepileptic drugs are prescribed are associated with an increased risk of suicidal thoughts and behavior. If suicidal thoughts or behavior emerge during treatment with AEDs, the prescriber should consider whether these symptoms may be related to the illness being treated. All patients who currently are taking or starting on any antiepileptic drug for any indication should be monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression. Background Since issuing safety alerts on December 16, 2008 and January 31, 2008 (see below), FDA has been working with the manufacturers of drugs in this class to better understand the suicidality risk. As described in the January 31, 2008, Information for Health Care Professionals Sheet on AEDS, eleven antiepileptic drugs were included in FDA’s original pooled analysis of placebo-controlled clinical studies in which these drugs were used to treat epilepsy as well as psychiatric disorders and other conditions. The increased risk of suicidal thoughts or behavior was generally consistent among the eleven drugs, with varying mechanisms of action and across a range of indications. This observation suggests that the risk applies to all antiepileptic drugs used for any indication. • • • AAN: Atypical Antipsychotic Reduces Autism Irritability By Kristina Fiore, MedPage Today Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston. is.gd/wERS Aripiprazole (Abilify) may be effective off-label for treating the irritability associated with autism, researchers here said. The atypical antipsychotic fared significantly better than placebo on a parent-rated scale of irritability (P0.05), Donald Lewis, M.D., of Sentara Norfolk General Hospital in Virginia, and colleagues reported at the American Academy of Neurology meeting. It also had significant advantages over placebo with regard to clinician assessments of irritability and hyperactivity. Only one atypical antipsychotic -- risperidone (Risperdal) -- is currently FDA approved for irritability associated with autism. However, treatment guidelines recommended that other atypical antipsychotics be considered for behavioral problems in autism. Researchers involved in the current study could not comment on whether aripiprazole was in the process of FDA approval for this indication. But Benjamin L. Handen, Ph.D., of the University of Pittsburgh, who was not involved in this study but is involved in similar trials, said FDA approval for the indication would give doctors an alternative for children who respond poorly to risperidone. "This was a well-controlled, multicenter trial involving a large sample of children with autism," Dr. Handen said. "The results suggest that, like risperidone, aripiprazole may be an option for treating irritability and associated behavioral concerns in this population." The researchers conducted two separate eight-week randomized, double-blind, parallel group trials -- one evaluating the efficacy of the drug in a flexible dose (2 to 15 mg) and the other evaluating a fixed dose (5, 10, and 15 mg per day), both compared with placebo. There were 98 patients with autism in the flexible dose arm, and 218 in the fixed-dose arm. Significantly greater improvement was seen with aripiprazole over placebo on the parent assessment scale in both trials (P0.05), but the flexible dose appeared to have a slight advantage. + Read more: is.gd/wERS • • • EDUCATION Unsafe In The Schoolhouse: Abuse Of Children With Disabilities tinyurl.com/co7ndg The Council of Parent Attorneys and Advocates just came out with this report on the results of a survey of school use of restraints, seclusion and other abuse. In the past 2 months, COPAA collected reports from parents and advocates about incidents in which children with disabilities were subjected to restraints, seclusion, and the use of aversives. Restraints consist of the use of physical force, mechanical devices and drugs to prevent or limit freedom of movement or control behavior. Seclusion is the confinement of a child in a locked room or space from which he cannot exit. Aversive procedures use painful stimuli in response to behaviors that are deemed unacceptable by their caregivers. We use the term “aversive interventions” to refer collectively to all three. COPAA’s report summarizes 143 of the incidents reported to us. A sampling of incidents is described below at page 4, and the full compilation of summaries is attached as Appendix A. The report shows that the use of restraints, seclusion, and aversives is extensive. Our colleagues at the National Disability Rights Network have similarly documented the extensive use of restraints and seclusion as reported by Protection and Advocacy agencies. + Read report here: tinyurl.com/co7ndg • • • RESEARCH Researchers Find First Signs of Autism Even in Infancy By Claudia Wallis, time.com. is.gd/wE0D Show the average 14-month-old baby a sealed jar of cookies, and you get some pretty predictable behavior. The child will reach for the treats and, when thwarted, look beseechingly at the nearest adult. The request for help — delivered with eye contact, gestures and often with pleading sounds — is unmistakable. But some babies don't do it. One little boy, captured on video by psychologist Wendy Stone at Vanderbilt University, repeatedly places a researcher's hand on the cookie jar but never once looks at her face to see why she isn't responding. Eventually, tragically, he gives up. Show the average 18-month-old a video of toddlers at play, and you can bet that the tot will be mesmerized by scenes with strong emotion: a fight or kiss. But some babies have other interests. At the Yale Child Study Center, psychologists Warren Jones, Ami Klin and Sarah Shultz measure when toddlers stop blinking — a reliable indicator of rapt attention. The typical child will stare at the scene of a kiss, but a child with autism will be transfixed by the opening and closing of a door. Experiments like these, presented at a recent conference at Columbia University's Teachers College, are helping researchers identify the signs of autism at ever earlier ages. For parents, says Stone, director of Vanderbilt's Treatment and Research Institute for Autism Spectrum Disorders, "the average age of first concern is 17 months, though a diagnosis isn't typically made until age 3. That's a long time to be concerned and not know what to do." In 2007, the American Academy of Pediatrics recommended that doctors begin screening babies for autism at 18 months, but researchers have yet to refine the tools for making a reliable diagnosis at that age. One issue, says Catherine Lord, director of the University of Michigan Autism & Communication Disorders Center, is that there is so much individual variability in how babies develop. Another challenge is that many of the signature signs of autism — delayed speech, repetitive movements or fixations on particular toys or objects — involve language and motor skills that babies have not yet acquired. That's why identifying the signs of autism before age 2 often involves the absence of typical behavior as opposed to the presence of aberrations. + Read more: is.gd/wE0D • • • Brain Anatomy Could Point to Autism By Steven Reinberg, HealthDay. is.gd/xksJ Autistic toddlers seem more likely to have an enlarged amygdala, a brain area linked with facial recognition and emotions, University of North Carolina researchers report. This brain abnormality appears to be tied to the ability to share attention and experiences with others, the team said. "This study adds clarification to a potential fundamental brain mechanism underlying social deficits in autism. It provides potential insights into how this behavior develops," said lead researcher Dr. Joseph Piven, a professor of psychiatry. "We found enlargement of the amygdala in very young children with autism at 2 years of age, and followed up again at age 4. The enlargement was stable over the 2- to 4-year-old time interval," he said. The amygdala is a structure that has previously been implicated in social and emotional perception and in autism, Piven said. "We also found that this enlargement was related to something called joint attention, or the ability of a young child to take cues from an adult about where to look in the visual field, for example, at an object of interest," he said. This ability develops in a narrow window, between 9 and 15 months, and is thought to be a fundamental deficit in autistic individuals that predicts poor outcomes in social behavior and language, Piven explained. "In another study, we have shown evidence that the brain in autism is normal in size until the end of the first year of life, at which time it overgrows," he said. "Understanding the pattern of very early brain changes in autism and their relationship to particular behaviors could lead to enhanced early detection and could direct us to early interventions for these brain and behavior changes," Piven said. The report is published in the May issue of the Archives of General Psychiatry. For the study, Piven's team conducted MRI scans of 50 autistic children and 33 children without the condition. The children had brain scans and testing of certain behavioral features of autism at 2 and 4. The researchers found autistic children were more likely to have an enlarged amygdala at 2 and 4. However, the researchers did not find a relationship between amygdala size and other social behaviors at this age, such as social gestures or ritualistic/repetitive behavior, Piven said. "We have found a very specific behavior, social-orienting, known to be a core neuropsychological mechanism in autism, to have a specific relationship to a very early change in a selected brain structure in autistic individuals," Piven said. The finding identifies "an important potential, fundamental mechanism underlying the development of autism," he added. + Read more: is.gd/xksJ • • • Age Gap Between Possible and Actual Autism Diagnosis Source: Washington University in St. Louis is.gd/xkFO Newswise — "Timely identification and diagnosis of an autism spectrum disorder (ASD) can impact a child's development and is the key to opening the door to the services and therapies available to children with autism," says Paul Shattuck, Ph.D., assistant professor at the George Warren Brown School of Social Work at Washington University in St. Louis. "Unfortunately, our research shows that the average age of autism diagnosis is nearly six years old, which is three to four years after diagnosis is possible." Shattuck is the lead author of an article on the timing of ASD identification in the current issue of the Journal of the American Academy of Child and Adolescent Psychiatry. He and study co-authors used data from 13 sites around the country that were funded by the Centers for Disease Control and Prevention (CDC) to collect information from the health and education records of eight year olds with a wide variety of developmental problems in 2002. Shattuck's research found that females were identified later than males and that early diagnosis was usually linked to a more severe or obvious cognitive impairment. There were no disparities in the age of diagnosis by race when the data are pooled from all 13 sites. However, in further analyses reported elsewhere, Shattuck and colleagues have found that Black and Hispanic children who meet diagnostic criteria for autism are much less likely to actually have a documented diagnosis in their records. "This data shows that there is a critical need for further research, innovation, and improvement in the diagnosis and treatment of autism," he says. Shattuck's upcoming research will look at the next series of CDC health and education data from 2004 and 2006 to see if there is an improvement in the average age of diagnosis. He has also received funding to study another important transition in the lives of children with autism — leaving high school and entering young adulthood. • • • PEOPLE Shock Jock Banned From UK To Sue Home Secretary A "shock jock" banned from Britain is threatening to sue Jacqui Smith, the Home Secretary, as her policy to exclude undesirable foreigners descended in to disarray yesterday. By Tom Whitehead, Home Affairs. is.gd/xkZ3 American DJ Michael Savage made the threat as it emerged the majority of people named and shamed on a new Home Office exclusion list has never applied to come to the UK in the first place. The list, published earlier this week, named 16 individuals who would not be let in to the country, including extremists, white supremacists and Islamic fanatics. Mr Savage, whose real name is Michael Weiner, was included for "engaging in unacceptable behaviour" by seeking to provoke violence and foster hatred. The DJ, who hosts a far right talk show called The Savage Nation, has described the Koran, the Islamic holy book, as a "book of hate" and questioned the validity of autism, though he has argued some comments have been taken out of context. Mr Savage said he was outraged to be named alongside hate preachers and "mass murderers" and said he is going to sue the "lunatic Jacqui Smith". He said: "For this lunatic Jacqui Smith, the Home Secretary of England, to link me up with skinheads who are killing people in Russia, to put me in (the same) league with mass murderers who kill Jews on buses is defamation. + Read more: is.gd/xkZ3 • • • ADVOCACY Take Action - The PA Senate Approved Anti-Autism Bill, Call Your Rep.! From AutismLink, PA. Dear Members of the Pennsylvania Autism Community: Many of you responded to our alert on Monday by calling or writing your legislators about the “alternative” budget the Republicans have sponsored in the Pennsylvania Senate – a budget that would cut $15 million from crucial autism programs and services. You are proving again that, when the Pennsylvania autism community needs to speak with one voice, it can make that voice resonate from every corner of our commonwealth and focus on the Capitol with a message that our General Assembly cannot ignore. We are not yet finished. The Pennsylvania Senate has approved this “alternative” budget. We must ensure that every member of the House of Representatives knows that we will not allow them to play politics with the budget and, in the process, devastate the programs we have fought so hard to establish. Our people have rights to dignity, independence, safety and support, and cuts to already under-funded autism programs will most assuredly deny them those most basic rights. There can be no steps backwards. Call or write your representative immediately and tell that person how devastating Senate Bill 850 would be to critical programs and services for persons with autism. (If you don’t know who your senator or representative is or how to contact that person, there is a helpful search function at www.legis.state.pa.us.) Urge your legislators to stand against any cuts in the autism budget. • • • Families of Autistic Children Fight for Kate's Law is.gd/xl1r By Denise Hnytka (WICHITA, Kan) Ten states already have it, and two are considering it - a law that requires insurance companies cover the treatment of autism. In Kansas, the bill is called Kate's Law. This session, it didn't make it out of the Senate or the House of Representatives. But this setback isn't stopping the people fighting for it. Since his diagnosis at age three, Linda Kendrick has watched her grandson improve. Londan, now six years old, is autistic. "When we got this diagnosis, we didn't know what to do," said Kendrick. "I wanted to know how I could help him and make his life easier and consequently our life easier." Londan gets individual attention during sessions at Heartspring. Kate's Law would require insurance companies cover this kind of treatment. "I know a lot of parents would sacrifice a whole bunch if they could find someone even to pay part of their treatment," said Kendrick. "They would sacrifice to find the rest of it." Kate's Law was voted down in the house earlier this month, a disappointment to Kendrick and those at Heartspring. "All of us as a community need to say that these kids matter," said Connie Coulter, Director of Autism Outreach at Heartspring. "They matter so much that we are going to call our state legislator next year." Coulter believes legislators are misinformed about the bill's impact. Kate's Law would have raised insurance premiums for everyone, but she says only by less than two dollars a month. "How can you say to someone that their child is not worth $1.88 a month?," asked Coulter. + Read more: is.gd/xl1r • • • EVENTS Jenny McCarthy To Deliver Keynote Address Autism One Conference Hope Is Real. Children Are Recovering. Chicago, 11:30 am, May 23 www.autismone.org/ A diagnosis of or suspicion that your child has autism is devastating. After months or years of denial it cannot be denied any longer. You are faced with the greatest question of your life – how to best help your child. The difficult step toward finding answers is a courageous one that can be as frightening as the initial suspicion or confirming diagnosis. It means recognizing and rejecting that labyrinth of Jabberwocky, gobbledygook, circular reasoning, and non-answers parents most often hear. It means educating yourself. It means trusting yourself. It means believing your child can get better. Your Instincts Are Right. There is a Better Way. We have helped thousands of children by educating parents and doctors about treating the underlying biomedical conditions. Behavioral therapies will only take you so far, but add them together and that is when hope becomes reality. This year’s theme Change Has Come reflects the immense strides our community has made over the last decade. Ten years ago no one believed a child with autism could get better. Today, thousands of children are getting better and hundreds have recovered. Pre-Conference Programs. There are more pre-conference choices than ever before (some like the Defeat Autism Now! Clinician Training and the Birt Center Law and Advocacy Training extend thru Friday). The programs provide the kind of in-depth coverage and, in many cases, hands-on training to help you quickly apply what you’ve learned. Today's SAR newslist is human compiled and provided through the support of paid subscription readers. - THANK YOU - |
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Vol. 13 No. 46
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