The Interagency Autism Coordinating Committee (IACC) is a United States federal advisory panel within the Department of Health and Human Services (HHS). It coordinates all efforts within HHS concerning autism spectrum disorder (ASD).
The IACC was established in 2000, and was reauthorized and chartered as a federal advisory committee since 2006. It is subject to periodic reauthorization. [1]
The IACC's primary objective is to monitor autism research and associated services and support activities throughout all federal departments and agencies, ensuring that efforts are not duplicative and that they benefit from cross-collaborative opportunities. [2] The IACC advises the Secretary of HHS in advances of ASD research. Specific research includes causes, prevention, treatment, early screening, diagnosis guidelines, interventions, and access to support for individuals with autism. [3] Additional functions of the IACC are to increase public understanding of member agencies' activities and research, and to act as a public forum to discuss autism spectrum disorder-related matters.
An annual update summarizing advances is submitted to Congress and the President. The annual update has been published online every year since 2007. The IACC report of 2016 activities was released in April 2017. [4] [5]
The IACC Strategic Plan is released periodically, [1] with the newest update since 2013 expected in the fall of 2017. [6] A November 2013 study of federal autism activities by the U.S. General Accounting Office found that better data and more coordination was needed, with specific recommendations for IACC, including annual updates of the IACC strategic plan. [7] Samantha Crane, an IACC board member, confirmed that none of the eight objectives that the IACC identified for research on autistic adult issues were fulfilled in 2013. [8]
In 2017, the GAO noted that the IACC has not collaborated with agencies outside the Department of Health and Human Services to support research for transition-age youth with ASD. They stated "As a result, IACC may continue to miss opportunities to leverage the knowledge of other agencies." [9]
The Committee includes both federal and public members. Federal officials are selected from government agencies that work on autism related issues. Public members include advocates, community providers, and researchers. There are 31 IACC members, three of whom are autistic. [10]
IACC activities and associated cross-agency programs, policies and research are coordinated and managed by the Office of Autism Research Coordination (OARC). [11]
Jonathan Mitchell, an autistic advocate, has criticized the IACC's nomination process by claiming that it is too biased towards neurodiversity. He points out that seven pro-neurodiversity, anti-cure autistics were appointed. Two anti-neurodiversity pro-cure autistics were nominated but turned down. [12] Jonathan Rose, a history professor at Drew University, agreed with his commentary that neurodiversity viewpoints are over-represented at the IACC. [13]
IACC member agencies within HHS are:
Member agencies external to HHS are the U.S. Department of Defense and U.S. Department of Education. [3]
Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.
The neurodiversity paradigm is a framework for understanding human brain function that recognizes the diversity within sensory processing, motor abilities, social comfort, cognition, and focus as neurobiological differences. The neurodiversity paradigm argues that diversity in human cognition is normal and that some conditions generally classified as disorders, such as autism, are differences and disabilities that are not necessarily pathological.
The following outline is provided as an overview of and topical guide to autism:
Wrong Planet is an online community for "individuals with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences". The site was started in 2004 by Dan Grover and Alex Plank and includes a chatroom, a forum, and articles describing how to deal with daily issues. Wrong Planet has been referenced by the mainstream U.S. media. Wrong Planet comes up in the special education curriculum of many universities in the United States. A page is dedicated to Wrong Planet and its founder in Exceptional Learners: Introduction to Special Education.
The Combating Autism Act of 2006 is an Act of Congress public law that was passed by the 109th United States Congress and was signed into law by President of the United States George W. Bush on December 19, 2006. It authorized nearly one billion dollars in expenditures over five years, starting in 2007, for screening, education, early intervention, prompt referrals for treatment and services, and research of the autism spectrum disorders of autism, Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder - not otherwise specified.
John Elder Robison is the American author of the 2007 memoir Look Me in the Eye, detailing his life with undiagnosed Asperger syndrome and savant abilities, and of three other books. Robison wrote his first book at age 49.
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The Administration for Strategic Preparedness and Response (ASPR) is an operating agency of the U.S. Public Health Service within the Department of Health and Human Services that focuses on preventing, preparing for, and responding to the adverse health effects of public health emergencies and disasters. Its functions include preparedness planning and response; building federal emergency medical operational capabilities; countermeasures research, advance development, and procurement; and grants to strengthen the capabilities of hospitals and health care systems in public health emergencies and medical disasters. The office provides federal support, including medical professionals through ASPR’s National Disaster Medical System, to augment state and local capabilities during an emergency or disaster.
On December 19, 2006, the Pandemic and All-Hazards Preparedness Act (PAHPA), Public Law No. 109-417, was signed into law by President George W. Bush. First introduced in the House by Rep. Mike Rogers (R-MI) and Rep. Anna Eshoo (D-CA), PAHPA had broad implications for the United States Department of Health and Human Services's (HHS) preparedness and response activities. Among other things, the act amended the Public Health Service Act to establish within the department a new Assistant Secretary for Preparedness and Response (ASPR); provided new authorities for a number of programs, including the advanced development and acquisitions of medical countermeasures; and called for the establishment of a quadrennial National Health Security Strategy.
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Ari Daniel Ne'eman is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ne'eman would be appointed to the National Council on Disability. After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010. He chaired the council's Policy & Program Evaluation Committee making him the first autistic person to serve on the council. In 2015, Ne'eman left the National Council on Disability at the end of his second term. He currently serves as a consultant to the American Civil Liberties Union. As of 2019, he also is a Ph.D. candidate in Health Policy at Harvard University.
Autism, also called autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental disorder characterized by symptoms of deficient reciprocal social communication and the presence of restricted, repetitive, and inflexible patterns of behavior. While its severity and specific manifestations vary widely across the spectrum, autism generally affects a person's ability to understand and connect with others, as well as their adaptability to everyday situations. Like most developmental disorders, autism exists along a dimension of symptom severity, subjective distress, and functional impairment. A consequence of this dimensionality is substantial variability in the nature and extent of support a person with ASD requires.
Geraldine Dawson is an American child clinical psychologist, specializing in autism. She has conducted research on early detection, brain development, and treatment of autism spectrum disorders (ASD) and collaborated on studies of genetic risk factors in autism. Dawson is William Cleland Distinguished Professor of Psychiatry and Behavioral Sciences and professor of psychology and neuroscience, former director, Duke Institute for Brain Sciences and founding director of the Duke Center for Autism and Brain Development at Duke University Medical Center. Dawson was president of the International Society for Autism Research, a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. From 2008 to 2013, Dawson was research professor of psychiatry at the University of North Carolina at Chapel Hill and was chief science officer for Autism Speaks. Dawson also held the position of adjunct professor of psychiatry at Columbia University and is professor emerita of psychology at University of Washington. She is a fellow of the American Psychological Society, American Psychological Association, International Society for Autism Research, and the Society of Clinical Child and Adolescent Psychology.
The Networking and Information Technology Research and Development (NITRD) program consists of a group of U.S. federal agencies to research and develop information technology (IT) capabilities to empower Federal missions; support U.S. science, engineering, and technology leadership; and bolster U.S. economic competitiveness.
The National Database for Autism Research (NDAR) is a secure research data repository promoting scientific data sharing and collaboration among autism spectrum disorder (ASD) investigators. The project was launched in 2006 as a joint effort between five institutes and centers at the National Institutes of Health (NIH): the National Institute of Mental Health (NIMH), the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Environmental Health Sciences (NIEHS), and the Center for Information Technology (CIT). The goal of NDAR is to provide a shared common platform for data collection, retrieval, and archiving to accelerate the advancement of research on autism spectrum disorders. The largest repository of its kind, NDAR makes available data at all levels of biological and behavioral organization for all data types. As of November 2013, data from over 90,000 research participants are available to qualified investigators through the NDAR portal. Summary information about the available data is accessible through the NDAR public website.
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