Alison Singer | |
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| Born | 1966 (age 57–58) |
| Nationality | American |
| Alma mater | Harvard University (MBA) |
| Occupation | Executive Director |
| Known for | Autism Science Foundation |
| Website | www |
| Neurodiversity paradigm |
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Alison Singer is the president of the Autism Science Foundation (ASF). She has also served on the IACC. [2] She was formerly an executive vice president of Autism Speaks and as a vice president at NBC.
Singer started the Autism Science Foundation after resigning from Autism Speaks in 2009, due to her view that it should not spend money on studying the scientifically discredited link between MMR vaccine and autism. [3] [4] She discourages their portrayal of a false balance on this issue. Singer has been described as a strong candidate for combating the perception of a link between autism and vaccines. At Autism Speaks, she was in a far more influential position, and helped the organization become well-known. [5] [6]
She developed the C.A.S.E. approach as a means for clinicians to address vaccine hesitancy immediately and during the clinical encounter in which the hesitancy is raised. [7] C.A.S.E. stands for Corroborate, About Me, Science, and Explain/Advise. With the C.A.S.E. approach, the clinician frames a response to the vaccine hesitant patient that corroborates awareness of the patient's hesitancy while identifying a shared underlying value or concern. Next, the clinician makes an about me statement, describing how the clinician went about getting a scientific answer to the concern. The clinician then summarizes the science underlying the recommendation and/or explanation addressing said concerns. Finally, the clinician explains the clinician's advice to the patient. The CASE approach then might only consist of four sentences altogether, but it connects the patient to the clinician through the shared value or concern (corroborate), recognizes and employs the professional standing of the clinician (about me), relies on science to address the concern (science), and allows the clinician to reframe the recommendation addressing the concern of the patient (explain/advise). [8] [9] [10]
She was profiled by the Harvard Business School in an alumni profile, commending her on building a "pipeline of scientists" to research autism. She claims that HBS gave her the skills needed to run the ASF nonprofit. [11]
Singer was inspired to fund autism research based on the negative experiences of her brother with autism who was institutionalized, and taking care of a severely autistic daughter. Her daughter works with Applied Behavior Analysis therapists, and needs constant care. [12]
Singer also serves on the board of the Marcus Autism Center at Emory, the Yale Child Study Center, the executive board of the Seaver Autism Center at the Icahn School of Medicine, the executive board of the Autism Research Center at the University of North Carolina at Chapel Hill, and is a member of the National Council on "Severe" Autism. [13] She will receive an honorary degree from Emory University in May 2020. [14]
Singer claims that she supports some of the goals of autism advocates, but still advocates for medical research on autism. [15] She says that neurodiversity often takes away funds from severely autistic individuals. [16] Singer has also advocated for more media awareness of severe autism. [17]
Autism Speaks sponsored and distributes the short film Autism Every Day , produced by Lauren Thierry and Eric Solomon. [18] Alison Singer, who was in the film, was reportedly criticized for a scene in which she said that when faced with having to place the girl in a school that she deemed to be terrible, she contemplated driving her car off a bridge with her child in the car. She additionally expressed this view in the presence of her autistic daughter. [19] Thierry said that these feelings were not unusual among non-autistic mothers of autistic children. [20] According to the book Battleground: The Media, Thierry instructed the families she interviewed not to do their hair, vacuum or have therapists present, and appeared with her film at homes crew without preliminary preparations, in order to authentically capture the difficulties of life with autistic children, such as autistic children throwing tantrums or physically struggling with parents. [19] [20]
In 2009, Singer responded by claiming that she made this comment because the New York State Department of Health recommended that her autistic daughter be placed in a school with very poor conditions, and did not want her daughter to suffer there. However, she regretted phrasing her concerns in that manner. Singer also claimed that she reconciled with autism advocates to some extent, but still advocates for medical research on autism. [15]
Facilitated communication (FC), or supported typing, is a scientifically discredited technique, which claims to allow non-verbal people, such as those with autism, to communicate. The technique involves a facilitator guiding the disabled person's arm or hand in an attempt to help them type on a keyboard or other such device which they are unable to properly use if unfacilitated.
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 the neurodiversity paradigm, viewing autism as a set of naturally-occuring variations in human cognition rather than as a disease to be cured or a disorder to be treated. The movement aligns itself with broader disability rights and uses a human rights framework. Central to most human rights frameworks is a belief that the relevant community, in this instance the autistic community, should be able to self-determine who is in that community, what language should be used in discussing the community, and should be seen as the primary voice whenever discussions of interest to the community are held. One of the common mottos used, which was borrowed from the disability rights movement is the phrase "nothing about us without us."
Vaccine hesitancy is a delay in acceptance, or refusal, of vaccines despite the availability of vaccine services and supporting evidence. The term covers refusals to vaccinate, delaying vaccines, accepting vaccines but remaining uncertain about their use, or using certain vaccines but not others. Although adverse effects associated with vaccines are occasionally observed, the scientific consensus that vaccines are generally safe and effective is overwhelming. Vaccine hesitancy often results in disease outbreaks and deaths from vaccine-preventable diseases. Therefore, the World Health Organization characterizes vaccine hesitancy as one of the top ten global health threats.
Bernard Rimland was an American research psychologist, writer, lecturer, and influential person in the field of developmental disorders. Rimland's first book, Infantile Autism, sparked by the birth of a son who had autism, was instrumental in changing attitudes toward the disorder. Rimland founded and directed two advocacy groups: the Autism Society of America (ASA) and the Autism Research Institute. He promoted several since disproven theories about the causes and treatment of autism, including vaccine denial, facilitated communication, chelation therapy, and false claims of a link between secretin and autism. He also supported the ethically controversial practice of using aversives on autistic children.
The following outline is provided as an overview of and topical guide to autism:
The thiomersal vaccine controversy centers around public concerns and debates over the safety of thiomersal, a mercury-based preservative used in vaccines, with some fearing it could cause neurological disorders such as autism, despite extensive scientific research showing no credible evidence linking thiomersal to such conditions.
Arthur Krigsman is a pediatrician and gastroenterologist best known for his controversial research in which he attempted to prove that the MMR vaccine caused diseases, especially autism. He specializes in the evaluation and treatment of gastrointestinal pathology in children with autism spectrum disorders, and has written in support of the diagnosis he calls autistic enterocolitis. The original study that tied the MMR vaccine to autism and GI complaints conducted by one of Krigsman's associates has been found to be fraudulent, and the diagnosis of "autistic enterocolitis" has not been accepted by the medical community.
Autism Every Day is a controversial 2006 documentary film sponsored by Autism Speaks, and produced by Lauren Thierry, Jim Watkins and Eric Solomon. It follows mothers of high support needs autistic children, and consists mainly of interviews with the mothers.
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 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.
Autism Speaks Inc. is an American 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, 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.
The Autism Science Foundation (ASF) is a non-profit organization that funds evidence-based autism research and supports autism families. The organization was founded in April 2009 by Alison Tepper Singer, a former senior executive of Autism Speaks and the longest-serving public member of the Interagency Autism Coordinating Committee (IACC), and Karen Margulis London, co-founder of the National Alliance for Autism Research. Both Singer and London are parents of autistic children.
Autism spectrum disorders (ASDs) or autism spectrum conditions (ASCs) describe a range of conditions classified as neurodevelopmental disorders in the DSM-5, used by the American Psychiatric Association. As with many neurodivergent people and conditions, the popular image of autistic people and autism itself is often based on inaccurate media representations. Additionally, media about autism may promote pseudoscience such as vaccine denial or facilitated communication.
In the United States, an alternative vaccination schedule is a vaccination schedule differing from the schedule endorsed by the Advisory Committee on Immunization Practices (ACIP). These schedules may be either written or ad hoc, and have not been tested for their safety or efficacy. Proponents of such schedules aim to reduce the risk of adverse effects they believe to be caused by vaccine components, such as "immune system overload" that is argued to be caused by exposure to multiple antigens. Parents who adopt these schedules tend to do so because they are concerned about the potential risks of vaccination, rather than because they are unaware of the significance of vaccination's benefits. Delayed vaccination schedules have been shown to lead to an increase in breakthrough infections without any benefit in lower side effect profiles.
The Lancet MMR autism fraud centered on the publication in February 1998 of a fraudulent research paper titled "Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children" in The Lancet. The paper, authored by now discredited and deregistered Andrew Wakefield, and twelve coauthors, falsely claimed causative links between the measles, mumps, and rubella (MMR) vaccine and colitis and between colitis and autism. The fraud involved data selection, data manipulation, and two undisclosed conflicts of interest. It was exposed in a lengthy Sunday Times investigation by reporter Brian Deer, resulting in the paper's retraction in February 2010 and Wakefield being struck off the UK medical register three months later. Wakefield reportedly stood to earn up to US$43 million per year selling diagnostic kits for a non-existent syndrome he claimed to have discovered. He also held a patent to a rival vaccine at the time, and he had been employed by a lawyer representing parents in lawsuits against vaccine producers.
Extensive investigation into vaccines and autism has shown that there is no relationship between the two, causal or otherwise, and that vaccine ingredients do not cause autism. Vaccinologist Peter Hotez researched the growth of the false claim and concluded that its spread originated with Andrew Wakefield's fraudulent 1998 paper, with no prior paper supporting a link.
Misinformation related to immunization and the use of vaccines circulates in mass media and social media in spite of the fact that there is no serious hesitancy or debate within mainstream medical and scientific circles about the benefits of vaccination. Unsubstantiated safety concerns related to vaccines are often presented on the internet as being scientific information. A large proportion of internet sources on the topic are mostly inaccurate which can lead people searching for information to form misconceptions relating to vaccines.
Current research indicates that autistic people have higher rates of LGBTQ identities and feelings than the general population. A variety of explanations for this have been proposed, such as prenatal hormonal exposure, which has been linked with sexual orientation, gender dysphoria and autism. Alternatively, autistic people may be less reliant on social norms and thus are more open about their orientation or gender identity. A narrative review published in 2016 stated that while various hypotheses have been proposed for an association between autism and gender dysphoria, they lack strong evidence.
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