Irish Woman Nails Autism-Cure Scammer

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

John Hand at Irish Mirror:

A man has been arrested in the US after an Irish woman alerted police that he was making and selling a bogus Covid-19 treatment.

Activist Fiona O’Leary informed cops in Las Vegas, Nevada, who lifted Elias Daniel Beltran Suarez over his scam on Monday.

Officials said his product posed “significant risks to patient health” after uncovering his makeshift chemical lab to create his bleaching agent treatment.

He claimed it could cure autism, cancer and Covid-19.

He is now facing the charge of acting as a medical practitioner without a licence.

Glenn Puit at The Las Vegas Review-Journal:

Police said the Las Vegas investigation started when an online sleuth who described herself as “a campaigner against dangerous pseudoscience” came across Suarez on the online portal Telegram under a group user name Comusav.com. The woman identified herself to the Las Vegas Review-Journal on Tuesday as Fiona O’Leary of Cork, Ireland.

In a phone interview, O’Leary said she has three children who have autism, and she learned years ago that chlorine dioxide was being peddled by fake doctors and pseudo-scientists to desperate parents of autistic children. She referred to the sellers of chlorine dioxide as “bleachers” who engage in “dangerous quackery.”

“Someone reached out to me telling me they were giving bleach to autistic children,” O’Leary said. “I thought they were mad.”

O’Leary said chlorine dioxide also is sold as a cure for cancer. She said she works tirelessly to out those who sell chlorine dioxide and report them to law enforcement. She said the treatment is especially popular in Latin America.

Better Business Bureau v. DeVos Company

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

As previous posts noted, Education Secretary Betsy DeVos has a stake in Neurocore, a "brain training" company. U

At International Business Times, Josh Keefe reports that DeVos actually increased her stake in the "brain training" outfit called Neurocore and that the BBB is going after it.

The National Advertising Division (NAD) of the Council of Better Business Bureaus recommended this week that Neurocore “discontinue its testimonials.” The NAD said a review of the company’s claims, and their supporting evidence, led it to conclude that “the advertiser’s evidence was insufficiently reliable to substantiate the strong health-related advertising claims.”

According to the NAD, these claims include statements such as, “81% of children who come to us on ADHD meds and complete our program are able to reduce or eliminate their use of medications upon program completion,” as well as claims that Neurocore services produced a “25% reduction in reported symptoms on the autism evaluation checklists.”

The problem with the company’s claims, according to the NAD, is that they relied on a study of their own patients and those patients’ self-assessments.
...
Advocates for students with disabilities including autism were especially alarmed by DeVos’ connection to Neurocore — a company that claimed its treatments produced a “25% reduction in reported symptoms on the autism evaluation checklists.”

“We have a lot of evidence-based treatments that actually do help children with autism,” Fred Volkmar, director of the Yale Child Study Center, told Spectrum News, a news site dedicated to autism research, in February. Volkmar said that DeVos’ awareness of treatments seemed to be limited to the one that “has not yet been shown to be effective.”

FTC Cracks Down on "Brain Training"

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval.

A May 18 release from the Federal Trade Commission: (h/t Disability Scoop)

The developers and marketers of the LearningRx “brain training” programs have agreed to stop making a range of false and unsubstantiated claims and pay $200,000 under a settlement with the Federal Trade Commission.

According to the FTC’s complaint, LearningRx Franchise Corp. and its CEO, Dr. Ken Gibson, deceptively claimed that their programs were clinically proven to permanently improve serious health conditions like ADHD, autism, dementia, Alzheimer’s disease, strokes, and concussions and that the training substantially improved school grades and college admission test scores, career earnings, and job and athletic performance. They also allegedly claimed that LearningRx brain training is 10 times more cost-effective than tutoring.

“Companies that say they can significantly improve serious health conditions or how your brain functions in everyday situations need to back up those claims with sound science,” said Jessica Rich, Director of the FTC’s Bureau of Consumer Protection. “In this case, the defendants couldn’t show their training provides the health or other real-world benefits they claimed.”

According to the FTC, the defendants promoted LearningRx through LearningRx.com and affiliated websites, as well as through a blog, Facebook and Twitter posts, print and radio ads, and direct mail pieces. They also allegedly used Google search ads to target consumers searching for terms such as “cure for ADD,” “autism cure,” “Asperger cure,” and “severe traumatic brain injury cure.” The defendants, based in Colorado Springs, Colorado, offered LearningRx training through more than 80 LearningRx centers that it franchised in 25 states.

The proposed order settling the FTC’s charges prohibits the defendants from claiming that their programs improve performance at work or in athletics, or improve the cognitive function of individuals with age-related or other health conditions, unless the claims are not misleading and substantiated by human clinical testing.

The order further prohibits the defendants from making unsubstantiated claims about the performance, benefits, or efficacy of their programs, including claims about improvement in school grades or scores on standardized academic tests, performance on everyday tasks, increased income, or superiority to academic tutoring. Finally, the order prohibits the defendants from misrepresenting the existence or results of any tests or studies, and from providing others with the means to make the prohibited claims. The order imposes a $4,000,000 judgment against the company, which will be suspended upon the payment of $200,000 as disgorgement of ill-gotten gains.

The Commission vote authorizing the staff to file the complaint and proposed stipulated final judgment and order was 3-0. The complaint and order were filed in the U.S. District Court for the District of Colorado.

NOTE: The Commission files a complaint when it has “reason to believe” that the law has been or is being violated and it appears to the Commission that a proceeding is in the public interest. Stipulated final orders have the force of law when approved and signed by the District Court judge.

The FTC is a member of the National Prevention Council, which provides coordination and leadership at the federal level regarding prevention, wellness, and health promotion practices. This case advances the National Prevention Council’s goal of increasing the number of Americans who are healthy at every stage of life. These cases are part of the FTC’s ongoing effects to protect consumers from misleading health advertising.

The Federal Trade Commission works to promote competition, and protect and educate consumers. You can learn more about consumer topics and file a consumer complaint online or by calling 1-877-FTC-HELP (382-4357). Like the FTC on Facebook(link is external), follow us on Twitter(link is external), read our blogs and subscribe to press releases for the latest FTC news and resources.

Yet Another Autism Charity Scam

A number of posts have described various autism scams. The Seattle Post-Intelligencer reports:

A Lynnwood wife and husband claiming to help impoverished autistic children were actually lining their pockets with donations taken outside Seattle-area grocery stores, the state Attorney General’s Office claims.

Brandie Christian was already caught in one charity scam involving assistance to children with autism. Now, state consumer protection investigators contend she and husband Joshua Hani have been scamming donors to a charity they launched – Autism Outreach Foundation – as regulators shuttered the other bogus nonprofit.

While they pledged to give money to poor parents whose children needed therapy for autism or related conditions, just $4,000 of the more than $400,000 they collected from donors actually went to needy families. Instead, state investigators contend Christian and Hani spent donors’ money on designer clothes, travel and personal expenses.

Earlier in September, attorneys for the state filed a civil lawsuit against the pair in an effort to shut down the Autism Outreach Foundation. The organization – which hasn’t issued a single grant to a struggling family in 2014 – appears to still be collecting money from donors.

Quack Cures

At Forbes, Emily Willingham takes on five quack cures:

MMS. It stands for Miracle Mineral Solution, but it’s really bleach. I know because I tested it myself, destroying a perfectly good cloth napkin in the process. Take a look at what it does to cotton. Now imagine it on the inside of a child’s mouth, esophagus, stomach, or intestines–its peddlers encourage its administration as an enema. Horrorshow. Yet not only do parents try this bleach as a “treatment” for their children’s autism, but also a major autism conference actually featured a presenter flogging this stuff, and the claim that it “recovered” 38 children in 20 months remains on the conference site as I type this.

Chemical castration. Burning off the lining of an autistic child’s intestines might seem pretty horrific, but it can pale in comparison to the tragedy that is chemical castration to “treat” autism. I have previously broken down the background of this concept, introduced to the world of autism treatment by the now notorious father-son team of the Geiers.

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Chelation. Chelation is the process of using a chemical to strip metal from the blood. It’s a good thing if you have mercury poisoning, which autistic people do not have. Yet, the persistent association in some circles between mercury (as a component of the preservative thimerosal) and autism (a leap from MMR, which never contained thimerosal in the US, to “all vaccines,” most of which also never did) means that many groups still flog chelation as a treatment. It is not one. One of the metals in our bodies that we need to live is calcium–for example, it keeps our hearts beating–and at least one autistic child has died during a chelation “treatment” because it wiped the child’s blood of this life-supporting ion.

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Hyperbaric oxygen therapy. Also a favorite with many of the alt-med-oriented autism organizations, this therapy has been target of an FDA warning to consumers. The bottom line is, laying down a lot of benjamins to subject an autistic child to ‘oxygen therapy’ is a waste of money, a likely torture to the child, and devoid of effectiveness.

Stem cells. Pro tip: If you have to travel outside the FDA purview for a treatment (as people have done for cancer “therapy” outside the US and also do for autism), you might want to think twice about it, or more times if the second thought doesn’t convince you otherwise...

Debunking a Medical Test for Autism

Previous posts have discussed the possibility of  medical tests of children or pregnant mothers. At Forbes, Steven Salzberg  writes of a a purported link between autism and maternal antibodies (see an earlier post):

Perhaps the biggest red flag is that the two lead authors, Daniel Braunschweig and Judy Van de Water already have a patent on the proteins described in their paper, and Van de Water is involved with a company, Pediatric Biosciences (PBI), that is already marketing a test to predict autism based on this study. Van de Water is the Chief Scientific Advisor for the company, which has licensed her patent for this specific test.

 ...Van de Water and her friends at Pediatric Biosciences seem far more interested in making money off the fears of prospective parents. PBI is planning to charge about $800 for their test, which they’ll begin selling next year. Stanford University biostatistician Steven Goodman says that they are “peddling false hope that giving birth to autistic kids can be avoided.”

A news article in Science last week raised many serious questions about Van de Water’s study and its claims. Several scientists quoted in that article questioned the premise of the study: that antibodies from the mother somehow get into the brain of the developing fetus. Yale scientist George Anderson said the data are too preliminary and the statistics too weak to support a clinical test (essentially the same argument I’m making here).

From the Science article:

Financial considerations aside, the key to any medical diagnostic test is its positive predictive value, a number that indicates how often a test, if positive, is right, [Yale's George] Anderson says. In a disorder such as autism, which has a prevalence in the general population of about one in 88 births, even a few false positives very quickly render a test of limited value, he says. Based on his calculations using Van de Water's data and the prevalence of autism, "I get a positive predictive value of 16.5%, which is pretty bad." At that rate, only one out of six positive tests would actually be correct, he explains.

[Stanford's Steven] Goodman says that he came up with the same low positive predictive value after crunching the data provided in Van de Water's paper. "That assumes that you accept these numbers at face value, and I don't," he says. Based on the design of the study and his own analysis of the group's published data, he describes Pediatric Bioscience's claim that a positive result on a test for these antibodies will mean that a woman has a "99 percent" likelihood of having a child with autism as "completely false."

Van de Water and D'Alvise respond that the company's press release was "a bit unclear as written" and that likelihood "was not meant to convey likelihood in the statistical sense, but rather the 99% accuracy with which the study demonstrated specificity of the biomarkers for ASD." They also say that test is not meant to screen the general population but would be for women at higher risk of having autistic offspring, such as those who are older or who already have a child with developmental issues.

A Bad Autism Charity

A number of posts have discussed autism charities.  Most do fine work, but some are not on the level. The Tampa Bay Times reports:

Autism Spectrum Disorder Foundation is one of the worst charities in America when it comes to spending large amounts of cash on for-profit solicitation companies.

But that fact has been obscured in documents filed with state regulators.

The Times and CIR took a closer look at the charity after readers suggested we investigate.

IRS tax documents show that from 2009 to 2011, the charity raised $7.6 million through its solicitors. More than 90 percent of that was paid directly to for-profit solicitation companies hired by the charity.

Its history of using high-cost fundraisers for most of its income would be enough to make Autism Spectrum one of the nation's worst charities. The Times/CIR rankings are based on the amount of money charities spend on fundraisers. But because state reports filed by one of the charity's solicitors understated Autism Spectrum's fundraising cost, it did not make the list.

The charity was founded in 2007 and is run by Michael Slutsky. The organization's mission is to educate the public about autism and provide financial assistance and educational material to help detect and treat the disease.

It provides scholarships for autistic children to attend camp, sends holiday gift cards and gives 'Early Detection Kits' to agencies that work with young children, according to its website.

But of the $7.6 million raised by solicitors, less than 3 percent has been spent on direct cash aid, tax records show.

Talking Points for the Hearing

Left Brain/Right Brain suggests some talking points for the congressional hearing next week:

1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.

The Thinking Person's Guide to Autism observes:

We at TPGA are concerned that no autistic-run organizations have been invited to the meeting as of this writing. We are also concerned about the track record of such congressional hearings: they have been used in the past to promote harmful misinformation about autism, and one of the past and current committee members is Rep. Dan Burton, who still firmly believes his grandchild's autism was caused by vaccines.

Autism "Charity" in Oregon

Scams plague the world of autism. Some involve shady providers. Some proffer quack cures.  Some rip off people who want to donate money to a worthy cause. The Oregonian reports:

A charity under investigation by the Oregon Department of Justice has continued to advertise for paid fundraisers in the Portland-Vancouver area four months after telling state prosecutors it was shutting down.

In June, saying Olympia-based Autism Awareness United appeared to have broken state laws, DOJ threatened legal action if the organization did not agree to stop raising money in Oregon. However, as of Friday, the group had not signed any agreement, and according to autism activists, has continued to raise money from Oregonians using paid fundraisers who set up tables outside supermarkets and other stores.

The state's investigation turned up receipts showing the nonprofit's debit card was used to pay for meals, cocktails, Chianti and other, unidentified expenses at a local casino. While not illegal, such expenses raise questions with charity oversight experts about a group's effectiveness. Meanwhile, Autism Awareness spent just 3 percent of its funds from late 2010 through early 2012 on direct assistance to needy families or autism-related agencies, according to documents obtained by The Oregonian under public records law.

Animals for Autism Scam -- The Resolution

Earlier posts described  a bogus outfit called "Animals for Autism." AP now reports:

An Illinois woman has agreed to pay restitution after being accused of a scam in which she allegedly promised to provide specially trained companion animals for children with autism.

Attorney General Lisa Madigan says Lea Kaydus had collected more than $5,000 through her organization, Animals for Autism. Kaydus lives in Glenarm, near Springfield.

In some cases, families got pictures of the puppies that were supposedly being trained to work with their children. In reality, the pictures had been taken years earlier and the dogs had no connection to Animals with Autism.

Madigan called the organization "a heartless scam" Thursday.

To settle a lawsuit filed by the attorney general, Kaydus agreed to repay the money she collected and abide by state fraud laws in the future.

Ripoff Update

An earlier post described a service dog scam.  The Chicago Tribune brings us up to date:

Families who had been holding out hope that they would receive a service dog this spring to help a child with autism have all but given up on a program they now fear was mismanaged from the start.

In February the Tribune reported on complaints from families across the nation about a central Illinois dog trainer who told them they had won service dogs for their children, only to cut off communications when they started asking questions about her credentials and operations.

The dog training operation, called Animals for Autism, was founded by Lea Kaydus, who with the families' help won a $50,000 grant through the Pepsi Refresh Project to train and place the dogs. Kaydus had said the dogs would join their families by spring 2012.

At the time of the Tribune's story, Kaydus had surfaced after a long silence with a January email to families. Since then, the parents say, they've heard nothing from Kaydus. They also say they have received no solid information from Global Giving, the company hired to manage the grant and project for Pepsi.

Also see video here.

Ripoffs

WSB-TV in Atlanta reports on an alleged theft:

Channel 2 Action News obtained the arrest warrants for a woman Suwanee police said stole thousands of dollars from a major non-profit while she was executive director.

Cynthia Pike, 47, a Lawrenceville resident, ran the Autism Society of America Georgia Chapter since 2007.

Pike's attorney called her an innocent and honest mother. But police say she is a thief, now charged with 16 felony counts of theft by conversion.

The Chicago Tribune reports on Animals for Autism, an organization that got a grant to provide 10 free service animals to 10 families.  When the group stopped communicating, the families made some disturbing discoveries (video here):

•The nonprofit tax number Kaydus supplied to families for use at fundraisers is invalid. According to the Illinois attorney general's office, Animals for Autism submitted an incomplete application in November and is not a registered nonprofit.

•Although Animals for Autism claimed 25 years of experience in training service dogs, parents could find only one family in possession of such a dog. When the Tribune asked to contact that family, Pepsi Refresh's grant manager, Global Giving, said it couldn't share the information.

•The Pepsi Refresh voting site stated the grant would go to "train and place free service dogs with autistic kids," but the terms of the grant do not require delivery of the dogs. According to Pepsi and Global Giving, the grant money may be spent on items that go "toward realizing the spirit of the grant," such as building kennels, caring for the dogs and buying training tools.

•Siberian Huskies are not ideal service dogs for young children. "They tend to be independent and were bred to pull sleds, not to please people like, for instance, golden retrievers," said Toni Eames, president of the International Association of Assistance Dog Partners, a consumer advocacy group for people with service dogs.
Autism service dogs provide companionship and can help calm children with autism and prevent them from wandering, a common problem.

... 

Eames said that only about 50 percent of the best-bred and -selected dogs graduate from service dog training. "You cannot possibly take 10 puppies and promise them as service dogs to 10 people," she said. "It doesn't work that way."

A Questionable Autism Charity

The Minneapolis Star-Tribune reports:

Jane Anlauf thought she was helping a worthy cause. When an organization called the Autism Spectrum Disorder Foundation (ASDF) called the 81-year-old Minnetonka woman in May, she agreed to solicit contributions from her friends and neighbors on their behalf.

But if the organization's IRS filing for 2009 is any indication, the fruits of her labor will mainly be used to pay for marketing material and worker wages at two national telemarketing call centers.

Anlauf received glossy literature and donation forms from the tax-exempt charity. She used her own stamps to send the material to her friends. She collected checks and mailed them in.

Her first indication that something might be amiss was when she called the Autism Society of Minnesota seeking the ASDF's address so she could forward a neighbor's late check. She was surprised to be told they had received a number of complaints about ASDF.

Based on the reports received so far, "we're not aware that any [ASDF] dollars are going to people living with autism," according to spokesperson Shannon Andreson. "We have been telling people to contact the attorney general's office.

The ASDF has been a thorn in the side of the Autism Society of America as well. According to society president Scott Badesch, telemarketers for ASDF have been falsely telling potential donors that they are either associated with the society or that the society endorses their work. The society has sent them two cease-and-desist orders.

"We don't do any soliciting over the phone," Badesch said. Nor does the Minnesota chapter, according to Andreson.

Also see previous coverage of the "charity" at Nonprofit Quarterly, the Neurodiversity Weblog, and the Autism Society.