Facilitated communication, autism and patients’ rights
This past April 2, on World Autism Awareness Day, Apple released a heartstrings-tugging commercial depicting an autistic boy typing, in part with the assistance of a facilitator, a message on an iPad that voiced: “So many people can’t understand that I have a mind. All they see is a person who is not in control. But now you can hear me. The iPad helps me to see not only my words, but to hold onto my thoughts.”
The commercial was surprising because this system of “facilitated communication” (FC) was thoroughly discredited in the 1990s. Facilitators had used plastic alphabet keyboards or portable typing devices, and in various videos—for example, the 1993 Frontline episode “Prisoners of Silence”— you see children who are not even looking at the keyboard as facilitators direct their typing or facilitators moving the keyboard under a child’s hand to produce the proper keystrokes. The technique was an academic curiosity until FC-generated messages included graphic descriptions of sexual abuse by families or caretakers of numerous children. Charges and lawsuits were filed, and courts needed scientists to determine who authored the accusations—the children or the facilitators?
Howard Shane, now director of the Autism Language Program at Boston Children’s Hospital, and Doug Wheeler, then at the O. D. Heck Developmental Center in Schenectady, N.Y., conducted independent controlled experiments in which autistic children and their facilitators were shown pictures of either the same or different objects while blinded to what each other saw. What was typed was always and only what the facilitator saw. (continue reading…)
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Charlie Sheen’s misadventure with a false cure for HIV/AIDS
When basketball legend Magic Johnson announced in 1991 that he had tested positive for HIV, it was a death sentence, and he promptly retired from the Los Angeles Lakers. Fans mourned his coming demise, but to everyone’s astonishment, Magic’s life continued in relative normalcy. A quarter of a century later he is an active entrepreneur, business leader, philanthropist and advocate for HIV/AIDS prevention.
Magic’s story is emblematic of one of the great medical achievements of our time. Although there is still no cure or vaccine for HIV, teams of medical researchers have developed a highly active antiretroviral therapy (the HAART “cocktail”) that significantly slows the progression of the disease by reducing the viral load to an undetectable level. If treatment is started promptly after early detection in young adults, for example, life expectancy returns close to normal.
Perhaps this is why there was far less media frenzy and social mourning after the November 2015 announcement by actor Charlie Sheen that he was HIVpositive. Most assumed HAART would save Sheen’s life, not his “tiger blood” and “Adonis DNA” that he boasted about during his highly publicized 2011 meltdown following his dismissal from the hit TV series Two and a Half Men. (continue reading…)
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Discerning science from pseudoscience
Newton was wrong. Einstein was wrong. Black holes do not exist. The big bang never happened. Dark energy and dark matter are unsubstantiated conjectures. Stars are electrically charged plasma masses. Venus was once a comet. The massive Valles Marineris canyon on Mars was carved out in a few minutes by a giant electric arc sweeping across the Red Planet. The “thunderbolt” icons found in ancient art and petroglyphs are not the iconography of imagined gods but realistic representations of spectacular electrical activity in space.
These are just a few of the things I learned at the Electric Universe conference (EU2015) in June in Phoenix. The Electric Universe community is a loose confederation of people who, according to the host organization’s website, believe that “a new way of seeing the physical universe is emerging. The new vantage point emphasizes the role of electricity in space and shows the negligible contribution of gravity in cosmic events.” This includes everything from comets, moons and planets to stars, galaxies and galactic clusters. (continue reading…)
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How trustworthy are DNA and other crime scene tests?
The criminal justice system has a problem, and its name is forensics. This was the message I heard at the Forensic Science Research Evaluation Workshop held May 26–27 at the AAAS headquarters in Washington, D.C. I spoke about pseudoscience but then listened in dismay at how the many fields in the forensic sciences that I assumed were reliable (DNA, fingerprints, and so on) in fact employ unreliable or untested techniques and show inconsistencies between evaluators of evidence.
The conference was organized in response to a 2009 publication by the National Research Council entitled Strengthening Forensic Science in the United States: A Path Forward, which the U.S. Congress commissioned when it became clear that DNA was the only (barely) reliable forensic science. The report concluded that “the forensic science system, encompassing both research and practice, has serious problems that can only be addressed by a national commitment to overhaul the current structure that supports the forensic science community in this country.” Among the areas determined to be flawed and in need of more research are: accuracy and error rates of forensic analyses, sources of potential bias and human error in interpretation by forensic experts, fingerprints, firearms examination, tool marks, bite marks, impressions (tires, footwear), bloodstain-pattern analysis, handwriting, hair, coatings (for example, paint), chemicals (including drugs), materials (including fibers), fluids, serology, and fire and explosive analysis. (continue reading…)
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Can burn patients really be healed from a distance by phone?
A couple of weeks ago I was at a meeting with television producers at a Pasadena, California hotel when I ran into a man named Richard Greene whom I had met last year at the debate that Leonard Mlodinow and I did with Deepak Chopra and others at Chapman University. With him was a woman named Dr. Marja Pronk, whom Greene introduced as someone who can heal burn patients from a distance by phone, and that she learned this skill under the tutelage of one Dr. Philippe Sauvage. Greene was interested in having me test Dr. Pronk while she was in town, but we ran out of time and the protocols and ethical considerations of intentionally burning either people or animals were prohibitive (in my view) and so at present we are still working on how this claim might be tested under controlled conditions. If you have any suggestions on how we might do this while also meeting the ethical requirements of an Institutional Review Board or Ethical Review Board that overseas the ethical treatment of human and animal subjects in experiments, please let me know.
First, I will provide you the background I was provided followed by my own thoughts on what it would take to test such a claim, along with my thoughts in between on Philippe Sauvage, which as you shall see is making extraordinary claims that go far beyond healing burn patients.
Richard Greene sent me this background material:
As we discussed, the claims made by Breton “healer” Dr. Philippe Sauvage and his co-workers, including medical Dr. Marja Pronk (http://www.youtube.com/watch?v=sshO4IrvJzI and www.sosburn.info) are astounding and challenge almost every belief we have in Western science. To date there have been approximately 500 who have benefited from this technology in 29 countries (including 46 states in the US). Here, for example, is a video of 22 year old Chris Fleming from Ontario, CA. and some press clippings from Africa: (continue reading…)
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