Kathleen Seidel

Last updated

Kathleen Seidel is an American researcher and weblog publisher from Peterborough, New Hampshire, best known for investigations and writing on autism. Her inquiries into the work and conduct of Mark Geier and his son David Geier regarding chelation therapy and a hormone-altering drug called Lupron, led to medical board actions in multiple states that suspended Mark Geier from medical practice, and caused David Geier to be arraigned for allegedly practising medicine without a license.

Contents

Early life

The oldest of seven children, Seidel grew up in Anaheim, California, the daughter of a chemical engineer father and a mother who taught severely disabled children. She attended the University of California, Santa Cruz, where she majored in English and Russian literature and book arts, and then attended Columbia University to receive a masters' degree in library science. [1]

Pre-blogging career

Seidel then worked at a children's library in Asheville for three years before she returned to New York City, where she met Dave, whom she would later marry. She then worked for a few years at Orbis International and the Taconic Foundation before moving with her husband to New Hampshire in 1995 to raise their family. One of their children was diagnosed with autism in 2000. [1]

Blogging

She is known for running the website Neurodiversity.com, whose goal has been described as "honoring the variety of human wiring." She is known for correcting the misinsformation that vaccines cause autism. For instance, in 2007, with regard to claims of a mercury-autism link, she said, "Some people say, 'My child is a toxic waste dump,' People don't understand the stigma. I don't want someone looking at my family member that way." [2] One of Seidel's most influential submissions was to the editors of the journal Autoimmunity Reviews, after the Geiers published a paper in that journal. She received no response, but the paper was subsequently retracted. [3] She has been called "the Erin Brockovich of autism spectrum disorders," (specifically, by Irving Gottesman) and has been called "vicious" by the Geiers themselves. [4] She and her husband, Dave, have two children, one of whom is on the autism spectrum. [5] She has also criticized Boyd Haley for marketing OSR#1 as a dietary supplement (it has since been pulled from the shelves). [6]

Subpoena

Seidel was the subject of a subpoena from Clifford Shoemaker, a vaccine-injury lawyer, requiring her to be deposed and to produce documents production in a case in which she was not involved, Sykes v. Bayer, and was defended by Public Citizen. [7] The subpoena seems to have been motivated by a post on her blog, neurodiversity.com, about the lawsuit. As David Ardia at PBS's Idea Lab blog put it: "Seidel's post mainly focused on developments in the lawsuit, but some of her language was critical of the Sykes and their case. For example, she indicated that the Sykes have "aggressively promoted the overwhelmingly discredited scientific hypothesis that autism is a consequence of mercury poisoning" and called their lawsuit "a hydra-headed quest for revenge, for compensation, and for judicial validation of autism causation theories roundly rejected by the greater scientific community, by numerous courts, and by a great number of individuals and families whose interests they purport to represent." [8]

One of the other criticisms revolved around her husband Dave Seidel, a Wikipedia editor, making edits to Geier's Wikipedia page and the pages of other autism-associated figures. [9] David Gorski wrote on his blog, Respectful Insolence, "Reading the subpoena makes it mind-numbingly obvious that Shoemaker hopes to turn up evidence that Kathleen has accepted support from the federal government or vaccine manufacturers, which, I’m guessing, he hopes to use to slime her and destroy her credibility. There’s nothing there, but Shoemaker thinks there is, and that’s enough." [10] She described the subpoena as "very broad" and filed a motion to quash. Shoemaker was sanctioned as a result. [11] [12] Her role in exposing the Geiers' quackery is explained by Seth Mnookin as follows: "The Geiers’ use of Lupron on autistic children first received widespread attention in 2006, when Kathleen Seidel put together a blockbuster 16-part series on her website, neurodiversity.com." [13] She is mentioned in an article in New York by Andrew Solomon, which also discusses the subpoena, which it says was served on March 26, 2008. [14]

Encryption survey

In 2016, along with Bruce Schneier and Saranya Vijayakumar, Seidel co-authored a survey regarding the effectiveness of restrictions on the exports of encryption products from the United States on their availability in other countries, as well as laws requiring encryption software to be made with a backdoor that the government can access. [15] In their survey, the authors stated that such bans still leave those who want to keep the government from accessing their data through a backdoor with many foreign alternatives to American or British software. [16]

Related Research Articles

<span class="mw-page-title-main">Controversies in autism</span> Controversies about both the cause of autism and the nature of the diagnoses themselves

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.

<span class="mw-page-title-main">Neurodiversity</span> Non-pathological explanation of variations in mental functions

Neurodiversity is a framework for understanding human brain function and mental illness. It argues that diversity in human cognition is normal and that some conditions classified as mental disorders are differences and disabilities that are not necessarily pathological.

<span class="mw-page-title-main">Autism rights movement</span> Disability rights movement for autistic people

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.

<span class="mw-page-title-main">Leuprorelin</span> Manufactured (artificial) injectable hormone

Leuprorelin, also known as leuprolide, is a manufactured version of a hormone used to treat prostate cancer, breast cancer, endometriosis, uterine fibroids, as part of transgender hormone therapy, for early puberty, or to perform chemical castration of violent sex offenders. It is given by injection into a muscle or under the skin.

Generation Rescue is a nonprofit organization that advocates the scientifically disproven view that autism and related disorders are primarily caused by environmental factors, particularly vaccines. The organization was established in 2005 by Lisa and J.B. Handley. Today, Generation Rescue is known as a platform for Jenny McCarthy's autism related anti-vaccine advocacy.

The following outline is provided as an overview of and topical guide to autism:

Claims of a link between the MMR vaccine and autism have been extensively investigated and found to be false. The link was first suggested in the early 1990s and came to public notice largely as a result of the 1998 Lancet MMR autism fraud, characterised as "perhaps the most damaging medical hoax of the last 100 years". The fraudulent research paper authored by Andrew Wakefield and published in The Lancet falsely claimed the vaccine was linked to colitis and autism spectrum disorders. The paper was retracted in 2010 but is still cited by anti-vaxxers.

Mark R. Geier is an American former physician and controversial professional witness who testified in more than 90 cases regarding allegations of injury or illness caused by vaccines. Since 2011, Geier's medical license has been suspended or revoked in every state in which he was licensed over concerns about his autism treatments and his misrepresentation of his credentials to the Maryland Board of Health, where he falsely claimed to be a board-certified geneticist and epidemiologist.

<span class="mw-page-title-main">Andrew Wakefield</span> Discredited British former doctor (born 1956)

Andrew Jeremy Wakefield is a British anti-vaccine activist, former physician, and discredited academic who was struck off the medical register for his involvement in The Lancet MMR autism fraud, a 1998 study that fraudulently claimed a link between the measles, mumps, and rubella (MMR) vaccine and autism. He has subsequently become known for anti-vaccination activism. Publicity around the 1998 study caused a sharp decline in vaccination uptake, leading to a number of outbreaks of measles around the world. He was a surgeon on the liver transplant programme at the Royal Free Hospital in London and became senior lecturer and honorary consultant in experimental gastroenterology at the Royal Free and University College School of Medicine. He resigned from his positions there in 2001, "by mutual agreement", then moved to the United States. In 2004, Wakefield co-founded and began working at the Thoughtful House research center in Austin, Texas, serving as executive director there until February 2010, when he resigned in the wake of findings against him by the British General Medical Council.

<span class="mw-page-title-main">Autism Speaks</span> American advocacy organization

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.

<span class="mw-page-title-main">Autism spectrum</span> Neurodevelopmental disorder

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 nonverbal, while others have proficient spoken language. Because of this, there is wide variation in the support needs of people across the autism spectrum.

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.

<i>Cedillo v. Secretary of Health and Human Services</i> Legal case in United States Court of Federal Claims, decided February 12, 2009

Michelle Cedillo v. Secretary of Health and Human Services, also known as Cedillo, was a court case involving the family of Michelle Cedillo, an autistic girl whose parents sued the United States government because they believed that her autism was caused by her receipt of both the measles-mumps-and-rubella vaccine and thimerosal-containing vaccines. The case was a part of the Omnibus Autism Proceeding, where petitioners were required to present three test cases for each proposed mechanism by which vaccines had, according to them, caused their children's autism; Cedillo was the first such case for the MMR-and-thimerosal hypothesis.

Trine Tsouderos is a journalist who formerly wrote for the Chicago Tribune, beginning in 2003, prior to which she wrote for People, the Tennessean, and the Wilson Daily Times. In 2013, Tsouderos joined PwC's healthcare think tank, Health Research Institute, as a director; in 2021, she was named leader of the institute and also began working as a consultant working on COVID and influenza vaccine projects with pharmaceutical companies. Tsouderos also was co-creator and co-host of PwC's healthcare podcast, Next in Health, and recorded nearly 80 episodes. In 2022, Tsouderos left PwC to work on a master's degree in the history of medicine at Johns Hopkins University School of Medicine.

Jon Poling is an American physician currently practicing in Athens, Georgia where he has worked at Athens Neurological Associates since 2001. He has also worked at Athens Regional Medical Center as the medical director of their apheresis unit since 2002. His area of expertise is autoimmune neurological disorders such as multiple sclerosis and neuromuscular disorders such as neuropathy or Myasthenia Gravis. He is the father of Hannah Poling, who received an injury compensation from the VICP in 2008 because Hannah manifested encephalopathy after being vaccinated by MMR. Hannah had underlying mitochondrial disease, which exacerbated her symptoms.

Sandra Jill James is an American biochemist and autism researcher who studies metabolic autism biomarkers. She works at Arkansas Children's Hospital Research Institute, where she is the director of the Metabolic Genomics Laboratory, as well as the University of Arkansas for Medical Sciences's department of pediatrics, where she has worked since 2002. She is also a member of the Autism Speaks Treatment Advisory Board, and is also a scientific advisor to the autism foundation N of One. Her current research focuses on the role of epigenetics in causing autism, as well as the effectiveness of supplements as a treatment for autism and the potential existence of abnormal metabolism in autistic children. This research is funded by a 5-year grant from the National Institutes of Health entitled "Metabolic biomarkers of autism: predictive potential and genetic susceptibility," as well as by a grant from Autism Speaks.

<span class="mw-page-title-main">Michael Fitzpatrick (physician)</span> British general practitioner

Michael Fitzpatrick is a libertarian, British general practitioner (GP) and author from London, United Kingdom. He was a member of the Revolutionary Communist Party. Fitzpatrick is known for writing several books and newspaper articles about controversies in autism, from his perspective as someone who is both a GP and the parent of a son with autism. His book Defeating Autism: A Dangerous Delusion (2008) describes his views on the rising popularity of "biomedical" treatments for autism, as well as the MMR vaccine controversy.

Morénike Giwa Onaiwu is an American educator, author, and autism and HIV advocate. Alongside E. Ashkenazy and Lydia Brown, Onaiwu is an editor of All the Weight of Our Dreams, an anthology of art and writing entirely by autistic people of color published by the Autism Women's Network in June 2017.

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 MMR vaccine and colitis and between colitis and autism. The fraud 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 $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.

<span class="mw-page-title-main">Alison Singer</span> American autism advocate

Alison Singer is the president of the Autism Science Foundation (ASF). She has also served on the IACC. She was formerly an executive vice president of Autism Speaks and as a vice president at NBC.

References

  1. 1 2 Offit, Paul (2008). Autism's False Prophets. Columbia University Press. p. 130.
  2. Szalavitz, Maia (27 February 2007). "Gifted? Autistic? Or Just Quirky?". Washington Post. Retrieved 8 October 2014.
  3. Deer B (2007). "Autism research: What makes an expert?". BMJ. 334 (7595): 666–7. doi:10.1136/bmj.39146.498785.BE. PMC   1839225 . PMID   17395945.
  4. Sanger-Katz, Margot (27 April 2008). "A forceful voice in autism debate". Concord Monitor . Archived from the original on 7 May 2008. Retrieved 29 January 2014.
  5. "About Us". Neurodiversity.com. 2004–2006. Archived from the original on 16 January 2013. Retrieved 29 January 2014.
  6. Tsouderos, Trine (26 July 2010). "Controversial supplement to come off shelves". The Chicago Tribune . Retrieved 29 January 2014.
  7. Kathleen Seidel is Not Alone
  8. "Blogger Kathleen Seidel Fights Subpoena Seeking Information About Vaccine Litigation". PBS . Archived from the original on 2012-09-15. Retrieved 2017-09-02.
  9. Welcome to my Conspiracy
  10. More legal thuggery
  11. Sanctioned
  12. "Cyber-Slapp". Wall Street Journal. April 10, 2008.
  13. "Lessons from the shaming of chemically castrating doc who "endangers autistic children and exploits their parents"". Archived from the original on 2012-10-29. Retrieved 2013-02-23.
  14. The Autism Rights Movement
  15. Schneier, Bruce; et al. (11 February 2016). "A Worldwide Survey of Encryption Products". Berkman Center for Internet and Society. SSRN   2731160.
  16. Zetter, Kim (11 February 2016). "Encryption Is Worldwide: Yet Another Reason Why a US Ban Makes No Sense". Wired. Retrieved 11 February 2016.