In The Politics of Autism, I discuss autism quackery. One particularly dangerous"cure" involves bleach. Brandy Zadrozny at NBC:
The chlorine dioxide Laurel Austin gives to her sons is made by mixing a sodium chlorite solution with an acid activator — both of which are available online for about $20. The solution was first promoted almost two decades ago by a former Scientologist, Jim Humble, as the “Miracle Mineral Solution,” or MMS for short, and sold as a cure for AIDS, cancer and almost every other disease known to humanity.
Doctors say chlorine dioxide’s only effects are harmful, warning that it can damage tissues in the digestive system, disrupt the functioning of red blood cells and lead to kidney failure.
Kerri Rivera, a former Chicago real estate agent who is not a doctor, latched onto the so-called cure and began suggesting it to parents of autistic children around 2012, writing a book and appearing at seminars and on popular conspiracy theorists’ YouTube channels at a time when autism diagnoses were skyrocketing. Rivera declined to comment.
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Over the last five years, poison control centers have managed 16,521 cases nationwide dealing with chlorine dioxide, according to data provided by the American Association of Poison Control Centers. At least 50 of the cases were considered life-threatening, and eight people died. It’s not clear how many of the cases involved people with autism.
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Laurel Austin showed the police online articles about chlorine dioxide, including one from the Autism Research Institute, one of the first and most vocal organizations to push the discredited theory that vaccines cause autism. That 2015 article claimed the solution had the potential to heal, but ultimately advised against its use, according to investigation notes. “This legitimizes the claim by Laurel of her use of MMS CLO2 as a holistic treatment approach,” the officer wrote. Laurel Austin followed up with the officer by sending a link to a YouTube video of Rivera explaining the chlorine dioxide protocol.
Literature in developmental psychology suggests that mothers and fathers both play unique and important roles in their children’s development. However, research investigating the unique contributions and psychological functioning of fathers of youth with developmental disabilities, and the role that fathers play in effective intervention, remains limited. Whereas evidence suggests that parent-mediated interventions for children with autism spectrum disorder (ASD) can lead to increased engagement from parents, and reduced stress and psychopathology commonly experienced by parents of youth with ASD, these interventions often do not specifically address potential benefits of paternal involvement. This systematic review aimed to understand how often/how commonly research on children with ASD examines the father’s role within the family, how often fathers are targeted directly during intervention efforts, and the impact of increased paternal involvement. This review suggests that fathers of children with ASD are not often included in research on children with ASD, in either their general involvement or in their inclusion in intervention. While studies generally suggest that these fathers may be less involved than mothers in childrearing practices, having both parents highly involved may improve the overall family system across many levels, and fathers may be equally as effective as mothers in implementing intervention strategies. Overall, this review suggests that while often overlooked, fathers of youth with ASD make important contributions to children with ASD and the larger family and should be included in future research on children with ASD.
In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a "school-to-guardianship pipeline" that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decision-making supports.
Under guardianship, an individual can have the following rights removed: the right to marry; the right to determine one's own friends; the right to vote; the right to seek or retain employment; the right to consent to a medical procedure, including a sterilization or abortion; the right to drive; the right to decide where to live; and many others.
In its latest report about these and other related findings, the National Council on Disability (NCD) – an independent federal agency that advises Congress, the President, and other federal agencies, found that school officials may be biasing parents toward pursuing guardianships over their adult children with disabilities because of the manner in which they are conveying information – and without understanding the legal implications of guardianship. Schools are the number one referral source for guardianship and a full 58 percent of people with ID/DD ages 18-22 receiving publicly funded services have guardians, most of whom will remain under guardianships for decades to come – many unnecessarily.
NCD's newest research examines whether the increased risk for people with ID/DD being under guardianships may be linked to the different ways in which states apply their guardianship laws, as well as to assumptions about the abilities of people with ID/DD to fully experience the dignity of risk. The research goes on to examine how being under a guardianship impacts one's ability to benefit from key civil rights laws. NCD's report, which relied heavily on key informant interviews and analysis of applicable existing data sets, also provides an in-depth analysis of the experience of people with ID/DD under guardianships in Washington, D.C., before and after recent guardianship reforms.
The report concludes by offering policy recommendations to states, the Social Security Administration, the U.S. Department of Education, the U.S. Department of Justice, the U.S. Department of Health and Human Services, and state courts.
Among the recommendations, NCD calls on DOJ to issue guidance to states on their legal obligations under the ADA in the context of ensuring that guardianship be a last resort imposed only after less-restrictive alternatives have been determined to be inappropriate or ineffective; and calls on ED to do more to promote its existing guidance that recognizes the serious implications of guardianship and encourages schools to recognize less restrictive decision making supports for adults in special education.
Read the report at ncd.gov/publications/2019/turning-rights-into-reality.
In The Politics of Autism, I discuss the growing number of college students on the spectrum.
Jeremy Bauer-Wolf at Inside Higher Ed:
About a decade ago, an influx of students diagnosed with autism spectrum disorder surprised officials at Rochester Institute of Technology’s Disability Services Office. The students had questions beyond the usual accommodations. They wanted to know how to deal with a snippy roommate or professor, or they just had problems communicating.
The presence of so many students with autism was unremarkable for RIT. The university is home to the well-known National Technical Institute for the Deaf, so the college was already used to teaching in different styles for students with disabilities. And students with autism are often attracted to computing and other STEM-centric programs -- RIT’s specialty.
Officials have registered 200 students with autism with disability services in the last academic year. Because students are not obligated to report their disabilities, those with autism are likely underrepresented in that figure. RIT’s total population is a little more than 19,000 students.
The institution wanted to do more for students on the spectrum, and with a two-year, $200,000 National Science Foundation grant, officials in 2008 launched a program designed specifically for them -- one that would provide students with autism with weekly coaching on all facets of college life.
Ten years later, the Spectrum Support Program has become a cornerstone at RIT, an initiative that grew organically and rapidly simply through word of mouth, said Laurie Ackles, the program’s director.
In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.
Antivaxxers usually claim that they are pro-vaccine. Even Jenny McCarthy has said that she is pro-vaccine. That is just not true.
Melissa Matthews at Yahoo:
Jessica Biel wants you to know that she not anti- vaccinations. Yesterday, the 37-year-old actress was dubbed an "anti-vaxxer" by some outlets after she spoke to California legislators about about proposed bill #SB277. Today, she claims to be pro-choice when it comes to vaccinations in an Instagram post.
The whole thing began on the social media channel when environmental activist Robert F. Kennedy Jr., posed for several photos with Biel captioned, "Please say thank you to the courageous @jessicabiel for a busy and productive day at the California State House."
The pair went to Sacramento to lobby against SB 276, a California state bill that proposes to require approval from a state public health officer when seeking medical exemptions for vaccinations.
News of Biels' visit has gone viral on social media and media outlets. This morning, the actress responded to claims that she is an "anti-vaxxer" in an Instagram post:
"I am not against vaccinations - I support children getting vaccinations and I also support families having the right to make educated medical decisions for their children alongside their physicians. My concern with #SB277 is solely regarding medical exemptions...
In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.
Anna Merlan at Jezebel:
Generation Rescue, the charity whose public face and board president is actor Jenny McCarthy, and which promotes debunked and sometimes dangerous treatments for autistic children, seems to rebranding away from the subject of autism and towards a much more broad set of medical issues. Sometime in May, the Generation Rescue website was taken offline, replaced with a page that reads, simply, “Stay tuned for what’s next.”
Even before the site disappeared, there were signs that McCarthy and Generation Rescue hoped to retool the organization into a “functional medicine” nonprofit, rather than one focused on the controversial and non-scientific autism recovery claims they’ve made for years. The apparent rebrand feels almost Goop-esque, a way for McCarthy and the organization to enter a much broader and less clearly defined “wellness” space, where many more kinds of questionable pseudoscience are possible.
Generation Rescue was founded by a businessman named J.B. Handley, who, like McCarthy, claims that vaccines cause autism. (Both Handley and his wife Lisa, like McCarthy, have claimed that one of their three children developed autism after being vaccinated. Yet another enormous studypublished in March has thoroughly refuted the idea that vaccines cause autism.
