Autism Speaks
Encyclopedia
Autism Speaks is the world's largest autism
advocacy organization that 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, vice chairman of General Electric
, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism. In April 2009, it became the national philanthropy of Alpha Xi Delta
.
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. In April 2010, the organization named Yoko Ono
its first "Global Autism Ambassador." Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.
Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy!
as a mascot.
advocacy group that, along with its predecessor organizations, has been an important source of funding research into causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments, and the public. 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".
Autism Speaks supports research in four main areas:
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. The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.
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.
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.
Autism Speaks believes that vaccine
s 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. 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.
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. The Today Show aired a week-long series of stories in February, 2005, highlighting autism research and treatment.
Autism Speaks sponsored and distributes the short film Autism Every Day
, produced by Lauren Thierry and Eric Solomon. 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. Autism Speaks staff member Alison Singer was reportedly criticized for a scene in which she said, in the presence of her autistic daughter, that when faced with having to place the girl in an inadequate school, she contemplated driving her car off a bridge with her child in the car. Thierry said that these feelings were not unusual among the non-autistic mothers of autistic children.
ed research into genetic causes, championed alternative theories and therapies, and advocated for individuals with autism.
(NAAR). NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for autism spectrum disorders. The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.
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.
. It was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism. 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. In 1997 CAN established the Autism Genetic Resource Exchange
; 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. 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.
Alison Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote for committing money to new research studies into vaccination and autism. The U.S. Interagency Autism Coordinating Committee, of which Singer was a member, voted against committing the research funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said:
She said that numerous scientific studies have disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on." Later that year, along with NAAR's cofounder Karen London, Singer launched the Autism Science Foundation
(ASF), a nonprofit organization supporting autism research premised on the principles that autism has a strong genetic component, that vaccines do not cause autism, and that evidence-based early diagnosis and intervention are critical.
Eric London resigned from Autism Speaks's Scientific Affairs Committee in June 2009, saying that the argument that "there might be rare cases of 'biologically-plausible' vaccine involvement ... are misleading and disingenuous", and that Autism Speaks was "adversely impacting" autism research. London is a founding member of the ASF's Scientific Advisory Board.
.
In January 2008, an autistic blog
ger 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
.
In September 2009, Autism Speaks screened the short video I Am Autism at its annual World Focus on Autism event; the video was created by Alfonso Cuarón
and by Autism Speaks board member Billy Mann. With narration closely resembling the 1954 short Taming the Crippler, which personified poliomyelitis
as a kind of grim reaper figure, I Am Autism has been criticized by autism advocates and researchers for its negative portrayal of autism.
Autism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
advocacy organization that 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, vice chairman of General Electric
General Electric
General Electric Company , or GE, is an American multinational conglomerate corporation incorporated in Schenectady, New York and headquartered in Fairfield, Connecticut, United States...
, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism. In April 2009, it became the national philanthropy of Alpha Xi Delta
Alpha Xi Delta
Alpha Xi Delta is a women's fraternity founded on April 17, 1893 at Lombard College, Galesburg, Illinois. Alpha Xi Delta is one of the oldest women's fraternities as well as one of the ten founding fraternities of the National Panhellenic Conference...
.
Spearheaded by the Wrights, the organization attracted a powerful board of directors, "world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld
Jerry Seinfeld
Jerome Allen "Jerry" Seinfeld is an American stand-up comedian, actor, writer, and television and film producer, known for playing a semi-fictional version of himself in the situation comedy Seinfeld , which he co-created and co-wrote with Larry David, and, in the show's final two seasons,...
and Paul Simon
Paul Simon
Paul Frederic Simon is an American singer-songwriter and guitarist.Simon is best known for his success, beginning in 1965, as part of the duo Simon & Garfunkel, with musical partner Art Garfunkel. Simon wrote most of the pair's songs, including three that reached number one on the US singles...
", and became a powerful lobbying
Lobbying
Lobbying is the act of attempting to influence decisions made by officials in the government, most often legislators or members of regulatory agencies. Lobbying is done by various people or groups, from private-sector individuals or corporations, fellow legislators or government officials, or...
voice in Washington. In April 2010, the organization named Yoko Ono
Yoko Ono
is a Japanese artist, musician, author and peace activist, known for her work in avant-garde art, music and filmmaking as well as her marriage to John Lennon...
its first "Global Autism Ambassador." Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research.
Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy!
Wow! Wow! Wubbzy!
Wow! Wow! Wubbzy! is an American animated television series created by Bob Boyle. The series is animated in Toon Boom and Adobe Flash software, produced by Bolder Media, and Starz Media...
as a mascot.
Activities
Autism Speaks is an autismAutism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
advocacy group that, along with its predecessor organizations, has been an important source of funding research into causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments, and the public. 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".
Research
Autism Speaks and its predecessor organizations have strengthened public awareness for autism research, raised funds directly for research, and lobbied Congress to leverage the privately raised money with much greater public funds. From 1997 to 2006 their advocacy in the areas of treatment and environmental factors shifted research priorities in the U.S. from basic research to translational and clinical research, with less emphasis on the underlying biology and greater emphasis on putting what was known to practical use.Autism Speaks supports research in four main areas:
- EtiologyEtiologyEtiology is the study of causation, or origination. The word is derived from the Greek , aitiologia, "giving a reason for" ....
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. - BiologyBiologyBiology is a natural science concerned with the study of life and living organisms, including their structure, function, growth, origin, evolution, distribution, and taxonomy. Biology is a vast subject containing many subdivisions, topics, and disciplines...
studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below. - DiagnosisDiagnosisDiagnosis is the identification of the nature and cause of anything. Diagnosis is used in many different disciplines with variations in the use of logics, analytics, and experience to determine the cause and effect relationships...
includes epidemiologyEpidemiologyEpidemiology is the study of health-event, health-characteristic, or health-determinant patterns in a population. It is the cornerstone method of public health research, and helps inform policy decisions and evidence-based medicine by identifying risk factors for disease and targets for preventive...
, early diagnosis, and biomarkers. - Autism therapiesAutism therapiesAutism therapies attempt to lessen the deficits and abnormal behaviours associated with autism and other autism spectrum disorders , and to increase the quality of life and functional independence of autistic individuals, especially children. Treatment is typically tailored to the child's needs...
include medication, behavioral, and psychological interventions. It includes treatments for children's medical conditions such as sleep disorderSleep disorderA sleep disorder, or somnipathy, is a medical disorder of the sleep patterns of a person or animal. Some sleep disorders are serious enough to interfere with normal physical, mental and emotional functioning...
s 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
Autism Genetic Resource Exchange
The Autism Genetic Resource Exchange is a DNA biobank funded by Autism Speaks. It exists to provide DNA specimens to geneticists who are researching autism.-History:...
(AGRE), a DNA
DNA
Deoxyribonucleic acid is a nucleic acid that contains the genetic instructions used in the development and functioning of all known living organisms . The DNA segments that carry this genetic information are called genes, but other DNA sequences have structural purposes, or are involved in...
repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide. The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now.
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.
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.
Autism Speaks believes that vaccine
Vaccine
A vaccine is a biological preparation that improves immunity to a particular disease. A vaccine typically contains an agent that resembles a disease-causing microorganism, and is often made from weakened or killed forms of the microbe or its toxins...
s have been shown to be safe for the vast majority of children, and that vaccines are important for preventing serious diseases such as measles
Measles
Measles, also known as rubeola or morbilli, is an infection of the respiratory system caused by a virus, specifically a paramyxovirus of the genus Morbillivirus. Morbilliviruses, like other paramyxoviruses, are enveloped, single-stranded, negative-sense RNA viruses...
and mumps
Mumps
Mumps is a viral disease of the human species, caused by the mumps virus. Before the development of vaccination and the introduction of a vaccine, it was a common childhood disease worldwide...
. 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. 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
Thiomersal
Thiomersal , and commonly known in the US as thimerosal, is an organomercury compound. This compound is a well established antiseptic and antifungal agent....
, a preservative that was formerly common in children's vaccines in the U.S.; no major scientific studies have confirmed this hypothesis.
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.Suzanne Wright appeared on NBC
NBC
The National Broadcasting Company is an American commercial broadcasting television network and former radio network headquartered in the GE Building in New York City's Rockefeller Center with additional major offices near Los Angeles and in Chicago...
's The Today Show to discuss the Ad Council
Ad Council
The Advertising Council, commonly known as the Ad Council, is an American non-profit organization that distributes public service announcements on behalf of various sponsors, including non-profit organizations and agencies of the United States government....
campaign launched in conjunction with Autism Speaks to raise autism awareness and to highlight the importance of early detection. The Today Show aired a week-long series of stories in February, 2005, highlighting autism research and treatment.
Autism Speaks sponsored and distributes the short film Autism Every Day
Autism Every Day
Autism Every Day is a 2006 film sponsored by Autism Speaks, and produced by Lauren Thierry, Jim Watkins and Eric Solomon.It debuted at a fundraiser named "A New Decade for Autism" in New York City on May 9, 2006, and made its mainstream debut on Don Imus show on MSNBC the following day...
, produced by Lauren Thierry and Eric Solomon. 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. Autism Speaks staff member Alison Singer was reportedly criticized for a scene in which she said, in the presence of her autistic daughter, that when faced with having to place the girl in an inadequate school, she contemplated driving her car off a bridge with her child in the car. Thierry said that these feelings were not unusual among the non-autistic mothers of autistic children.
Mergers
Autism Speaks, through a series of mergers, has combined organizations that funded peer reviewPeer review
Peer review is a process of self-regulation by a profession or a process of evaluation involving qualified individuals within the relevant field. Peer review methods are employed to maintain standards, improve performance and provide credibility...
ed research into genetic causes, championed alternative theories and therapies, and advocated for individuals with autism.
National Alliance for Autism Research
In early 2006, a year after its founding, Autism Speaks merged with the National Alliance for Autism ResearchNational Alliance for Autism Research
The National Alliance for Autism Research , 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.-Origins and activities:...
(NAAR). NAAR, founded in 1994, was the first U.S. nonprofit organization dedicated to supporting research into causes, treatment, and cures for autism spectrum disorders. The founders comprised a small group of parents, including two psychiatrists, a lawyer and a chemistry professor.
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). CAN was founded in 1995 by Jonathan Shestack and Portia Iversen, the parents of a child with autism whose story is told in the book Strange SonStrange Son
Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism is a non-fiction book that follows the story of Portia Iversen's second son who initially appeared to be developing normally, but started to have autistic characteristics by the age of two...
. It was an organization of parents, doctors and scientists devoted to research to prevent, treat and cure autism. 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. In 1997 CAN established the Autism Genetic Resource Exchange
Autism Genetic Resource Exchange
The Autism Genetic Resource Exchange is a DNA biobank funded by Autism Speaks. It exists to provide DNA specimens to geneticists who are researching autism.-History:...
; 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. 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.
Autism Coalition for Research and Education
Autism Speaks is also allied with Autism Coalition for Research and Education, an advocacy group.Splits
Autism Speaks assigns a high priority to research into whether immunization is associated with autism risk, and this high priority has raised concerns among parents and researchers.Alison Singer, a senior executive of Autism Speaks, resigned in January 2009 rather than vote for committing money to new research studies into vaccination and autism. The U.S. Interagency Autism Coordinating Committee, of which Singer was a member, voted against committing the research funds; this was contrary to the Autism Speaks policy on vaccine safety research. Singer said:
- "There isn't an unlimited pot of money, and every dollar spent looking where we know the answer isn't is one less dollar we have to spend where we might find new answers. The fact is that vaccines save lives; they don't cause autism."
She said that numerous scientific studies have disproved the link first suggested more than a decade ago and that Autism Speaks needs to "move on." Later that year, along with NAAR's cofounder Karen London, Singer launched the Autism Science Foundation
Autism Science Foundation
The Autism Science Foundation is a non-profit organization which supports research into autism, but opposes more research into the disproven and fraudulent "link" between autism and vaccinations...
(ASF), a nonprofit organization supporting autism research premised on the principles that autism has a strong genetic component, that vaccines do not cause autism, and that evidence-based early diagnosis and intervention are critical.
Eric London resigned from Autism Speaks's Scientific Affairs Committee in June 2009, saying that the argument that "there might be rare cases of 'biologically-plausible' vaccine involvement ... are misleading and disingenuous", and that Autism Speaks was "adversely impacting" autism research. London is a founding member of the ASF's Scientific Advisory Board.
Portrayal of autism
Autism Speaks's advocacy has been based on the view of autism as a disease, a view shared by many but not all autism scientists. In contrast, some autism activists have asserted that people with autism are different but not diseased, challenging the conceptualization of autism as a medical conditionNeurodiversity
Neurodiversity is a "controversial concept [that] ... regards atypical neurologicaldevelopment as a normal human difference". According to Jaarsma and Welin , the "neurodiversity movement was developed in the 1990s by online groups of autistic persons...
.
In January 2008, an autistic blog
Blog
A blog is a type of website or part of a website supposed to be updated with new content from time to time. Blogs are usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in...
ger 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
Aspies For Freedom
Aspies For Freedom is a solidarity and campaigning group which aims at raising public awareness of the autism rights movement. The term "Aspies" refers to people who have been diagnosed with Asperger syndrome, but the group also welcomes anyone on the autism spectrum.-Aims:The aim of Aspies For...
.
In September 2009, Autism Speaks screened the short video I Am Autism at its annual World Focus on Autism event; the video was created by Alfonso Cuarón
Alfonso Cuarón
Alfonso Cuarón Orozco is a Mexican film director, screenwriter and film producer, best known for his films Children of Men, Harry Potter and the Prisoner of Azkaban, Y tu mamá también, and A Little Princess.- Early life :...
and by Autism Speaks board member Billy Mann. With narration closely resembling the 1954 short Taming the Crippler, which personified poliomyelitis
Poliomyelitis
Poliomyelitis, often called polio or infantile paralysis, is an acute viral infectious disease spread from person to person, primarily via the fecal-oral route...
as a kind of grim reaper figure, I Am Autism has been criticized by autism advocates and researchers for its negative portrayal of autism.