 | |
| Type | Biobank |
|---|---|
| Predecessor | Cure Autism Now |
| Founded | 1990s |
| Website | autismspeaks |
The Autism Genetic Resource Exchange (AGRE) is a DNA biobank funded by Autism Speaks. It exists as a DNA repository and family registry of genotypic and phenotypic information available to autism researchers worldwide [1]
AGRE was established in the 1990s by a predecessor organization, Cure Autism Now. [2]
Cure Autism Now was a Los Angeles-based non-profit organization founded in 1995 by Jonathan Shestack and Portia Iversen, the parents of an autistic child, whose story is told in the book Strange Son . Cure Autism Now was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism. [3] In 1997, Cure Autism Now established AGRE despite initial resistance from scientists to begin a project that conflicted with existing practices. [4]
In October 2011, AGRE announced a plan to create the world's largest library of sequenced human genomes of individuals with autism-related genes, representing 2000 families and 10000 individuals.[ citation needed ] To do this, AGRE will provide specimens to the Beijing Genomics Institute, who would perform the sequencing. [5]
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 autism rights movement, also known as the autistic acceptance movement, is a social movement allied with disability rights that emphasizes a neurodiversity paradigm, viewing autism as a disability with variations in the human brain rather than as a disease to be cured. The movement advocates for several goals, including greater acceptance of autistic traits and behaviors; reforms of services - i.e. services that focus on improving quality of life and well-being instead of suppression and masking of autistic traits that are adaptive or not harmful or imitations of social behaviors of neurotypical (non-autistic) peers ; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.
Aspies For Freedom (AFF) is a solidarity and campaigning group that aimed at raising public awareness of the autism rights movement. The aim of Aspies For Freedom is to educate the public that the autism spectrum is not always a disability, and that there are advantages as well as disadvantages. For this purpose, the group organizes an annual Autistic Pride Day. AFF provides support for the autistic community and protests attempts to cure autism.
The UC Davis MIND Institute is a research and treatment center affiliated with the University of California, Davis, with facilities located on the UC Davis Medical Center campus in Sacramento, California. The institute is a consortium of scientists, educators, physicians and parents dedicated to researching the causes of and treatments for autism spectrum disorders, fragile X syndrome, and other neurodevelopmental disorders. The director of the MIND institute is Dr. Leonard Abbeduto.
The National Alliance for Autism Research (NAAR), based in Princeton, New Jersey, was a non-profit advocacy organization, founded by parents of children with autism concerned about the limited funding available for research.
The following outline is provided as an overview of and topical guide to autism:
The heritability of autism is the proportion of differences in expression of autism that can be explained by genetic variation; if the heritability of a condition is high, then the condition is considered to be primarily genetic. Autism has a strong genetic basis. Although the genetics of autism are complex, autism spectrum disorder (ASD) is explained more by multigene effects than by rare mutations with large effects.
The causes of autism are environmental or genetic factors that predispose an individual to develop autism, also known as autism spectrum disorder (ASD). Many causes of autism have been proposed, but understanding of the theory of causation of autism is incomplete. Attempts have been made to incorporate the known genetic and environmental causes into a comprehensive causative framework. ASD is a neurodevelopmental disorder marked by impairments in communicative ability and social interaction and restricted/repetitive behaviors, interests, or activities not suitable for the individual's developmental stage. The severity of symptoms and functional impairment vary between individuals.
Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided primarily into two camps; the autism rights movement and the Pathology paradigm. The pathology paradigm advocates for supporting research into therapies, treatments, and/or a cure to help minimize or remove autistic traits, seeing treatment as vital to help individuals with autism, while the neurodiversity movement believes autism should be seen as a different way of being and advocates against a cure and interventions that focus on normalization, seeing it as trying to exterminate autistic people and their individuality. Both are controversial in autism communities and advocacy which has led to significant infighting between these two camps. While the dominant paradigm is the pathology paradigm and is followed largely by autism research and scientific communities, the neurodiversity movement is highly popular among most autistic people, within autism advocacy, autism rights organizations, and related neurodiversity approaches have been rapidly growing and applied in the autism research field in the last few years.
The Autism Diagnostic Interview-Revised (ADI-R) is a structured interview conducted with the parents of individuals who have been referred for the evaluation of possible autism or autism spectrum disorders. The interview, used by researchers and clinicians for decades, can be used for diagnostic purposes for anyone with a mental age of at least 24 months and measures behavior in the areas of reciprocal social interaction, communication and language, and patterns of behavior.
The Autism Community in Action (TACA) is a nonprofit organization founded in 2000 by Lisa Ackerman and based in Irvine, California. The mission statement is "TACA provides education, support and hope to families living with autism". As of 2023, there are 41 chapters of TACA throughout the United States.
Linda M. Brzustowicz is a professor of genetics at Rutgers University and a member of the Motif BioSciences Scientific Advisory Board, whose main purpose is to develop technology that will benefit all laboratories using "biosamples," or samples of blood, DNA, stem cells, etc. that advance the field of human genetics. She has produced notable research in human gene functions in both the pathologic and normal states, contributing to the understanding of genetics of schizophrenia, autism, and specific language impairment (SLI). Because the diagnosed cases of childhood autism have experienced an unprecedented spike in recent times, causing speculation about the debatable "autism epidemic," such research is invaluable.
Autism Speaks Inc. is a non-profit autism awareness organization and the largest autism research organization in the United States. It sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright and his wife Suzanne, a year after their grandson Christian was diagnosed with autism. The same year as its founding, the organization merged with Autism Coalition for Research and Education. It then merged with the National Alliance for Autism Research in 2006 and Cure Autism Now in 2007.
Autism, formally called autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental disorder characterized by deficits in social communication and social interaction, and repetitive or restricted patterns of behaviors, interests, or activities, which can include hyper- and hyporeactivity to sensory input. Autism is clinically regarded as a spectrum disorder, meaning that it can manifest very differently in each person. For example, some are nonspeaking, while others have proficient spoken language. Because of this, there is wide variation in the support needs of people across the autism spectrum.
Stephen Wayne "Steve" Scherer is a Canadian scientist who studies genetic variation in human disease. He obtained his PhD at the University of Toronto under Professor Lap-chee Tsui. Together they founded Canada's first human genome centre, the Centre for Applied Genomics (TCAG) at the Hospital for Sick Children. He continues to serve as director of TCAG, and is also a University Professor in the Department of Molecular Genetics, and the director of the McLaughlin Centre at the Temerty Faculty of Medicine at the University of Toronto.
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 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.
Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism is a 2007 autobiography by Portia Iversen. It follows the development of her second son, who started expressing autistic characteristics around age two. Iverson heard about a nonverbal autistic 14-year-old boy in India whose mother had taught him to speak and write poetry. Iverson decided to bring the boy and his mother to California to see if her son could be taught to speak.
Autism Cymru was Wales' national charity for autism with offices in Cardiff, Wrexham, and Aberystwyth. The charity was established in May 2001 through an initial 3-year grant provided by The Shirley Foundation. The founder chair of the Trustees was Dame Stephanie Shirley of the Shirley Foundation.
Diagnosis, treatment, and experiences of autism varies globally. Although the diagnosis of autism is rising in post-industrial nations, diagnosis rates are much lower in developing nations.
Jonathan Mitchell is an American author and autistic blogger who writes about autism including the neuroscience of the disorder and neurodiversity movement. His novel The Mu Rhythm Bluff is about a 49-year-old autistic man who undergoes transcranial magnetic stimulation.