Autism Speaks: Difference between revisions
→Disputes: Rewrite summary of replacement parody sites to match the source better. Source says Aspies for Freedom is an autism rights group, for example. |
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Autism Speaks sponsored and distributes the short film ''[[Autism Every Day]]'', produced by Lauren Thierry and Eric Solomon.<ref>{{cite news |title= Hard-hitting look at autism is being shown at Sundance |author= Moore AS |work= New York Times |url=http://nytimes.com/2007/01/21/nyregion/nyregionspecial2/21lifilm.html |date=2007-01-21 |accessdate=2008-11-16}}</ref> Thierry accused Autism Speaks of not paying her for her work on the feature version of the film; Autism Speaks asserted that Thierry was paid in full.<ref>{{cite news |author= Friedman R |title= Celebrity autism group in civil war |date=2007-06-07 |work=FOX News |url=http://www.foxnews.com/story/0,2933,278814,00.html#2 |accessdate=2007-10-09}}</ref> The film was criticized by some for a scene depicting Autism Speaks senior staff member Alison Singer who, devastated the thought of having to place her autistic child in an inadequate school, contemplated driving her car off a bridge with her child in the car. Thierry said Singer was courageous to have admitted this publicly.<ref>{{cite news |title= Autism: the art of compassionate living |author= Liss J |work=WireTap |url=http://wiretapmag.org/education/38631 |date=2006-07-11 |accessdate=2008-03-21}}</ref> |
Autism Speaks sponsored and distributes the short film ''[[Autism Every Day]]'', produced by Lauren Thierry and Eric Solomon.<ref>{{cite news |title= Hard-hitting look at autism is being shown at Sundance |author= Moore AS |work= New York Times |url=http://nytimes.com/2007/01/21/nyregion/nyregionspecial2/21lifilm.html |date=2007-01-21 |accessdate=2008-11-16}}</ref> Thierry accused Autism Speaks of not paying her for her work on the feature version of the film; Autism Speaks asserted that Thierry was paid in full.<ref>{{cite news |author= Friedman R |title= Celebrity autism group in civil war |date=2007-06-07 |work=FOX News |url=http://www.foxnews.com/story/0,2933,278814,00.html#2 |accessdate=2007-10-09}}</ref> The film was criticized by some for a scene depicting Autism Speaks senior staff member Alison Singer who, devastated the thought of having to place her autistic child in an inadequate school, contemplated driving her car off a bridge with her child in the car. Thierry said Singer was courageous to have admitted this publicly.<ref>{{cite news |title= Autism: the art of compassionate living |author= Liss J |work=WireTap |url=http://wiretapmag.org/education/38631 |date=2006-07-11 |accessdate=2008-03-21}}</ref> |
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In January 2008, an autistic [[blogger]] upset with some charities' portrayal of autism created a critical parody of the Autism Speaks website, and later took the site down in response to legal demands from Autism Speaks to stop using the Autism Speaks name and logo without permission. Autism Speaks claimed the spoof could confuse people looking for information about autism. |
In January 2008, an autistic [[blogger]] upset with some charities' portrayal of autism created a critical parody of the Autism Speaks website, and later took the site down in response to legal demands from Autism Speaks to stop using the Autism Speaks name and logo without permission. Autism Speaks claimed the spoof could confuse people looking for information about autism. New parody sites were later launched by Gareth Nelson, founder of the autism rights group [[Aspies for Freedom]].<ref>{{cite news |author= Biever C |title= Voices of autism 'silenced' by charity |url=http://www.newscientist.com/channel/being-human/mg19726414.300-voices-of-autism-silenced-by-charity.html |work= New Scientist |date=2008-02-01 |accessdate=2008-02-05}}</ref> |
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On June 20th 2008 another autistic blogger who was publishing shirts that stated "Autism Speaks Can Go Away, I Have Autism I can Speak For Myself" had their legal paraody shirt taken down by the shirt manufacturer due to a notice from Autism Speaks <ref>http://www.aspieweb.net/proof-that-autism-speaks-is-attacking-autism-self-advocacy/</ref> |
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==References== |
==References== |
Revision as of 06:05, 24 November 2008
Template:Autism cure movement Autism Speaks is a an autism advocacy organization that aims to promote autism research, improve public awareness about autism, and improve the lives of autistic individuals and their families. It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism.[1]
Spearheaded by the Wrights, the organization attracted a powerful board of directors, "world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon", and became a powerful lobbying voice in Washington. Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.[1]
Activities
In a 2006 press release, Autism Speaks stated as its goal "to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families".[2]
Awareness
The Walk for Autism Research program conducts an annual autism walk on Long Island, New York; the walk attracted 20,000 participants in October, 2006, and raised $2 million.[3]
Suzanne Wright appeared on NBC's The Today Show to discuss the Ad Council campaign launched in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection.[4] The Today Show aired a week-long series of stories in February, 2005, highlighting autism research and treatment.[5]
Research
Autism Speaks supports research in four main areas:[6]
- Etiology includes genetic and environmental factors that may cause autism. This research includes searches for autism susceptibility genes, animal models for autism, environmental toxins, maternal viral infections, and vaccine schedules.
- Biology studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below.
- Diagnosis includes epidemiology, early diagnosis, and biomarkers.
- Autism therapies include medication, behavioral, and psychological interventions. It includes treatments for children's medical conditions such as sleep disorders and gastrointestinal conditions that may hinder behavioral interventions, along with treatments for older individuals, and complementary and alternative medicine.
Autism Speaks funds the Autism Genetic Resource Exchange (AGRE), a DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide.[7] The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.[8]
Autism Speaks funds the Autism Tissue Program, a network of researchers that manages and distributes brain tissues donated for autism research. These donations are rare and are a vital component of research into the causes of autism.[9]
Autism Speaks supports the Clinical Trials Network, which focuses on new pharmacological treatments. It also supports the Toddler Treatment Network, which develops new interventions for infants and toddlers.[6]
Mergers
Autism Speaks, through a series of mergers, created a distinct organization combining an advocacy group, an organization devoted to peer reviewed research into genetic causes, and an organization which championed alternative theories and therapies.[1]
National Alliance for Autism Research
In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism Research (NAAR).[10] NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cure for autism spectrum disorders.[11] The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.[12]
NAAR raised money to provide research grants focusing on autism, and had committed an excess of $20 million to over 200 autism research projects, fellowships and collaborative programs—more than any other non-governmental organization. NAAR focused intently on its role in establishing and funding the Autism Tissue Program, a post-mortem brain tissue donation program designed to further autism research studies at the cellular and molecular level. Other major programs included the 'High Risk Baby Sibling Autism Research Project', and the 'NAAR Genome Project'. NAAR also published the NAARRATIVE, a newsletter on autism biomedical research.
Cure Autism Now
In 2007, Autism Speaks completed its merger with Cure Autism Now (CAN).[13] CAN was founded in 1995 by Jonathan Shestack and Portia Iversen, the parents of a child with autism, and was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism.[14] Iversen and Shestack were invited to join NAAR's board but declined, impatient with what they considered NAAR's excess of caution in staying with the scientific establishment.[15] In 1997 CAN established the Autism Genetic Resource Exchange (AGRE; see Research for details); CAN was successful in establishing AGRE despite an initially negative reaction from scientists who were concerned whether CAN could carry out rigorous work, and despite what CAN considered to be scientists' reluctance to share their data.[15] During its existence, Cure Autism Now provided more than $39 million for research grants and other programs. Its flagship programs included the AGRE, Autism Treatment Network, Clinical Trials Network, and Innovative Technology for Autism. It also funded education and outreach efforts.[13]
Autism Coalition for Research and Education
Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.[1]
Disputes
Autism Speaks believes that vaccines have been shown to be safe for the vast majority of children, and that vaccines are important for preventing serious diseases such as measles and mumps. It recognizes that some individuals may have adverse reactions to, or respond poorly to, vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions.[6] This has strained relations between the Wrights and their daughter Katie, the mother of an autistic boy. Katie believes her son's autism was caused by thiomersal, a preservative that was formerly common in children's vaccines in the U.S.; no major scientific studies have confirmed this hypothesis.[1]
Autism Speaks sponsored and distributes the short film Autism Every Day, produced by Lauren Thierry and Eric Solomon.[16] Thierry accused Autism Speaks of not paying her for her work on the feature version of the film; Autism Speaks asserted that Thierry was paid in full.[17] The film was criticized by some for a scene depicting Autism Speaks senior staff member Alison Singer who, devastated the thought of having to place her autistic child in an inadequate school, contemplated driving her car off a bridge with her child in the car. Thierry said Singer was courageous to have admitted this publicly.[18]
In January 2008, an autistic blogger upset with some charities' portrayal of autism created a critical parody of the Autism Speaks website, and later took the site down in response to legal demands from Autism Speaks to stop using the Autism Speaks name and logo without permission. Autism Speaks claimed the spoof could confuse people looking for information about autism. New parody sites were later launched by Gareth Nelson, founder of the autism rights group Aspies for Freedom.[19]
References
- ^ a b c d e Gross J, Strom S (2007-06-18). "Autism debate strains a family and its charity". New York Times. Retrieved 2007-10-09.
- ^ "Cure Autism Now and Autism Speaks announce plans to combine operations" (Press release). Autism Speaks. 2006-11-29. Retrieved 2008-11-21.
- ^ "Long Island Walk holds enthusiastic 2007 kick off". Autism Speaks. 2007. Retrieved 2008-11-21.
- ^ "Suzanne Wright discusses new Autism Speaks awareness campaign on Today Show, MSNBC". Autism Speaks. Retrieved 2008-11-21.
- ^ "NBC networks to focus on autism". Autism Speaks. 2005-02-17. Retrieved 2007-11-21.
- ^ a b c Twachtman-Cullen D (2008). "Dr. Geraldine Dawson: setting the research agenda for Autism Speaks" (PDF). Autism Spectr Q (16): 8–11. Retrieved 2008-08-16.
- ^ Geschwind DH, Sowinski J, Lord C; et al. (2001). "The Autism Genetic Resource Exchange: a resource for the study of autism and related neuropsychiatric conditions". Am J Hum Genet. 69 (2): 463–6. doi:10.1086/321292. PMC 1235320. PMID 11452364.
{{cite journal}}
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(help)CS1 maint: multiple names: authors list (link) - ^ Painter K (2004-01-12). "Science getting to roots of autism". USA Today. Retrieved 2008-11-16.
- ^ Haroutunian V, Pickett J (2007). "Autism brain tissue banking". Brain Pathol. 17 (4): 412–21. doi:10.1111/j.1750-3639.2007.00097.x. PMID 17919127.
- ^ "Autism Speaks and the National Alliance for Autism Research complete merger" (Press release). Autism Speaks. 2006-02-13. Retrieved 2008-11-21.
- ^ "National Alliance for Autism Research: committed to accelerating biomedical autism research to unlock the mysteries of autism spectrum disorders". The Exceptional Parent. April 2002. pp. 103–5. Retrieved 2008-11-15.
- ^ London E (1997). "A psychiatrist's journey from parent to founder of research advocacy organization". Psychiatr Times. 14 (11).
- ^ a b "Autism Speaks and Cure Autism Now complete merger" (Press release). Autism Speaks. 2007-02-05. Retrieved 2007-11-01.
- ^ "How does the autistic brain work?". PBS. 2003-04-06. Retrieved 2008-11-21.
- ^ a b Coukell A (Winter 2006). "You can hurry science". proto. Massachusetts General Hospital. pp. 26–31.
- ^ Moore AS (2007-01-21). "Hard-hitting look at autism is being shown at Sundance". New York Times. Retrieved 2008-11-16.
- ^ Friedman R (2007-06-07). "Celebrity autism group in civil war". FOX News. Retrieved 2007-10-09.
- ^ Liss J (2006-07-11). "Autism: the art of compassionate living". WireTap. Retrieved 2008-03-21.
- ^ Biever C (2008-02-01). "Voices of autism 'silenced' by charity". New Scientist. Retrieved 2008-02-05.
External links
- "Autism Speaks". Retrieved 2008-05-29.
- "Autism Genetic Resource Exchange". Retrieved 2008-05-29.
- "Autism Tissue Program". Retrieved 2008-05-29.