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July 2010, Vol.10, No.7

AAIDD F.Y.I.
July 2010, Vol.10, No.7

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Dear AAIDD Friends and Colleagues:

Centers for Disease Control has not overestimated the prevalence of Autism Spectrum Disorders in the United States, reveals the first ever analysis of the Center’s records-based tracking system.
Constructing a “Good Death”: Read an excerpt from the new book, End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities.
Despite years of study, little is understood about alcohol’s effect on fetal development, Georgetown University researchers say.
Access AAIDD annual meeting presentations on best practices in diagnosing intellectual disability and establishing a system of supports for people with this condition.
On the 11th anniversary of Olmstead vs. L.C., the U.S. Senate holds a Hearing, President Obama reflects on strides made by the current Administration, and U.S. Office of Disability Director explains what the recent Health Care Reform means for people with disabilities.
Pregnant women with higher blood levels of a common flame retardant have altered thyroid hormone levels necessary for fetal growth and brain development, finds new study.

CENTERS FOR DISEASE CONTROL HAS NOT OVERESTIMATED THE PREVALENCE OF AUTISM SPECTRUM DISORDERS IN THE UNITED STATES, REVEALS THE FIRST EVER ANALYSIS OF THE CENTER’S RECORDS-BASED TRACKING SYSTEM
A first ever evaluation of the Centers for Disease Control’s (CDC) tracking system used to estimate the prevalence of Autism Spectrum Disorders (ASDs) has revealed that the system is not likely over-estimating the prevalence of ASDs in the United States, and most children found to have an ASD by a clinical examination were also detected by the tracking system. The evaluation is published as an article titled, “Evaluation of a Records-Review Surveillance System Used to Determine the Prevalence of Autism Spectrum Disorders” in the June 22 online issue of the Journal of Autism and Developmental Disorders. Read an abstract. An average of 1 in 150 children is affected by an ASD in the United States.

Also in autism news, the world's largest DNA scan by UCLA researchers for familial autism has uncovered new genetic changes in children with autism that are often not present in their parents. Identified in less than 1 percent of the population, these rare variants occur nearly 20 percent more in children with autism. Read more.

CONSTRUCTING A “GOOD DEATH”: READ AN EXCERPT FROM THE NEW BOOK, END-OF-LIFE CARE FOR CHILDREN AND ADULTS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Although the end of life is inevitable for all individuals, it is becoming increasingly possible that children and adults with intellectual and developmental disabilities can participate in constructing their own end-of-life scenario to obtain a “good death,” or at least one that is as good as a well-planned ending can be. In this chapter from End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities, authors Sandra Friedman and David Helm talk about the historical and social framework that has led to the current day practices in end-of-life care for children and adults with intellectual disabilities. End-of-Life Care, published by the American Association on Intellectual and Developmental Disabilities (AAIDD), dispels myths and provides the first comprehensive framework to make decisions regarding major medical, ethical, legal, and spiritual issues surrounding end-of-life care.

Learn more about the book at http://bookstore.aaidd.org. Download "Constructing a Good Death". A special pre-publication offer on the book has been extended until August 1, 2010. Listen to an interview with Dr. Friedman.

DESPITE YEARS OF STUDY, LITTLE IS UNDERSTOOD ABOUT ALCOHOL’S EFFECT ON FETAL DEVELOPMENT, GEORGETOWN UIVERSITY RESEARCHERS SAY
It’s long been known that alcohol use in pregnancy can lead to children with intellectual disability and birth defects, but researchers who study fetal alcohol syndrome (FAS) have not made definitive progress on preventing the disorder, detecting it early, or effectively treating it, say researchers at the Georgetown University Medical Center. Published in the online June 16th issue of Developmental Neuroscience, four first-year medical students at Georgetown University School of Medicine looked into the science and clinical treatment of FAS, and found that although there is much ongoing study, no new medical strategies exist to change the grim outcome that can occur when a fetus is exposed to alcohol. Fetal Alcohol Spectrum Disorders is the leading known preventable cause of intellectual disability and birth defects, and a leading known cause of learning disabilities.Read an abstract of “Screening, Diagnosing and Prevention of Fetal Alcohol Syndrome: Is This Syndrome Treatable?” by Sahar Ismail et al. Read a press release on this discovery.

ACCESS AAIDD ANNUAL MEETING PRESENTATIONS ON BEST PRACTICES IN DIAGNOSING INTELLECTUAL DISABILITY AND ESTABLISHING A SYSTEM OF SUPORTS FOR PEOPLE LIVING WITH THIS CONDITION
Visit www.aaidd.org/intellectualdisabilitybook to access presentations made by authors of Intellectual Disability: Definition, Classification, and Systems of Supports (11th edition)at the recent annual meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD) in Rhode Island in June. Intellectual Disability, the official definition manual of AAIDD, presents the state-of-the-art system of defining and diagnosing intellectual disability, and establishes a framework for developing a system of supports for people with intellectual disability. Learn more about the book. Access resources on the book, including videos, FAQs, and more.

ON THE 11TH ANNIVERSARY OF OLMSTEAD VS. L.C., THE U.S. SENATE HOLDS HEARING, PRESIDENT OBAMA REFLECTS ON STRIDES MADE BY CURRENT ADMINISTRATION, AND U.S. OFFICE OF DISABILITY DIRECTOR EXPLAINS WHAT THE HEALTH REFORM MEANS FOR PEOPLE WITH DISABILITIES
The Senate Health, Education, Labor and Pensions Committee held a hearing on June 22nd on the Americans with Disabilities Act and the enforcement of the landmark U.S. Supreme Court decision, Olmstead v. L.C. Listen to the hearing. Also on Anniversary of Olmstead, President Obama highlighted his Administration's actions to assist Americans with disabilities over the past year. Henry Claypool, Director of the U.S. Office on Disability, reflects on how the Affordable Care Act (ACA) advances the principles of equality, barrier removal, and community integration embodied in the landmark events of Olmstead vs. L.C. and the Americans with Disabilities Act.

PREGNANT WOMEN WITH HIGHER BLOOD LEVELS OF A COMMON FLAME RETARDANT HAVE ALTERED THYROID HORMONE LEVELS NECESSARY FOR FETAL GROWTH AND BRAIN DEVELOPMENT, FINDS NEW STUDY
Researchers at the University of California, Berkeley, have found that pregnant women with higher blood levels of a common flame retardant had altered thyroid hormone levels, a result that could have implications for fetal health, including brain development. Studies suggest that Polybrominated Diphenylether (PBDE) flame retardants can be found in the blood of up to 97 percent of U.S. residents, and at levels 20 times higher than those of people in Europe. Because of California's flammability laws, residents in this state have some of the highest exposures to PBDEs in the world. The study, titled, “Polybrominated Diphenylether (PBDE) Flame Retardants and Thyroid Hormone during Pregnancy” is published in the June 21st issue of the journal, Environmental Health Perspectives. Read an abstract. Read a press release on this discovery from the University of California, Berkeley.

AAIDD F.Y.I. is compiled by Anu Prabhala, Editor, and is published by the American Association on Intellectual and Developmental Disabilities (Formerly AAMR). Please submit comments, suggestions, tips, and news to anu@aaidd.org. To learn about AAIDD products, visit http://bookstore.aaidd.org. For more information on becoming an AAIDD member, visit /content_14.cfm?navID=13.

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