Camel’s milk. B12 lollipops. Hyperbaric oxygen chambers. “Ion-cleansing” foot baths. Chelation therapy. Gluten-free diets. Casein-free diets. Massive doses of nutritional supplements. All of these products and services have two things in common. First, mainstream (and widely trusted) medical bodies don’t recognize them as a reputable or effective treatment for autism. Second, they’re all recommended by—and in some cases sold outright through—Generation Rescue, a charity for autistic kids and their families whose board president and most famous face is actress Jenny McCarthy.
A deep dive into the world of Generation Rescue has revealed that the organization doesn’t just promote ineffective or medically unproven or downright debunked treatments for autism (all of which has been demonstrated before): The organization and the people associated with it profit from them, too. In two cases, Generation Rescue has heavily promoted products owned by past board members, at the time they served on the board: hyperbaric oxygen chambers and B12 lollipops, both of which have been presented on GR’s website as near-miraculous treatments for symptoms of autism.
In another case, Generation Rescue has lavishly praised and promoted products made by a corporate sponsor—the maker of a ionic footbath that supposedly “cleanses” “toxins” from the body—without directly revealing the company’s business relationship with GR. Families can also apply for “grants” from Generation Rescue, which funnels them into receiving treatment—and buying more products—from handpicked naturopathic doctors and GR partner organizations. (As of March 2019, Generation Rescue says on their site that applications to the grant program are temporarily closed while they update “critical pieces” of the program.)
Finally, Generation Rescue’s past executive director, Candace McDonald, who stepped down in October of 2018, appears to have been paid another $100,000 a year for at least three years in fees to her consulting firm. Furthermore, McDonald moved Generation Rescue’s headquarters into a guest house on her property. (According to tax records, the organization was doing so until they found a suitable new headquarters.) In the meantime, GR paid McDonald an additional $27,000 in rent in 2015 and $12,000 in 2016, according to the organization’s tax forms.
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By most available metrics, Generation Rescue’s footprint in the world of families affected by autism is large, as are their ambitions. They have 39,000 followers on Facebook. A conference they organized each year through 2018, the Autism Education Summit, promised to have, as they put it in their tax forms, “the most in-depth and current lectures on autism treatment and care.” (It’s unclear how many people typically attended the summit, but in 2016, the organization said it cost $357,794 to put on and bought in about $152,945 in revenue, meaning it lost money.)
The group has also garnered the support of minor celebrities, many of whom played in a charity poker tournament on March 9, and at least one now-major one. In 2010, according to the Daily Beast, Donald Trump’s foundation donated $10,000 to Generation Rescue.
Besides McCarthy and Donnie Wahlberg, GR’s current board members also include Katie Wright, who is the daughter of Bob and Suzanne Wright, the couple who founded the influential organization Autism Speaks. Wright very publicly feuded with her parents and the organization in 2007 over her belief — disputed by every mainstream medical body—that thimerosal, a mercury-based preservative once used in some vaccines, causes autism. (Wright is now, per her Twitter bio, also a board member with SafeMinds and the National Autism Association. SafeMinds has also suggested that vaccines and autism are linked. The National Autism Association, as recently as 2012, made the same suggestion, writing that the CDC had “falsely claimed” there was no link between the two.) Also on the board is Deirdre Imus, the wife of former sports radio shock jock Don Imus; Deirdre runs a business selling green cleaning products. The final current board member is Rowena Salas, the co-owner of the Hotel Baker in St. Charles, Illinois, where Generation Rescue events are frequently held, including March’s celebrity poker event.
Generation Rescue isn’t the sole organization trading in dubious but profitable autism services. A look at the products it promotes and the medical experts it cites reveals the chaotic hall of mirrors that families with autistic children are thrust into almost as soon as they receive a diagnosis.
In that world, reputable organizations can be difficult to distinguish from the ones selling snake oil, and harmless treatments appear alongside discredited or dangerous ones. And too often, the concept of “healing” or “reversing” autism is misleadingly held out as a realistic and and widely achievable goal, one that families can reach if they simply dive headfirst into a dizzying array of regimens presented to them.
The profit potential is huge—and so is the risk to children, some of them without the ability to communicate verbally, who could potentially be exposed to treatments that either won’t help at all or will cause them actual physical harm.
Among the most worrisome treatments is chelation, a process approved for lead poisoning in which a fluid is inserted—through an IV, orally, or as a suppository—in order to bind to metals from the bloodstream and remove them. (The metals are excreted in urine and feces.) It’s a medically debunked and potentially very risky procedure for treating symptoms of autism. Yet it’s one that GR has nonetheless repeatedly promoted, even though the American Academy of Pediatrics has said for at least 20 years that it’s unsafe and ineffective. One of Generation Rescue’s often-cited medical experts, who’s appeared repeatedly at their conferences, is a past member of their medical advisory board, and is quoted more than once on their website, is a doctor who was placed on probation in 2011 for prescribing chelation and other questionable medical treatments to a 7-year-old child.
Generation Rescue has also run a Q&A with a naturopathic doctor recommending chelation as recently as 2017; the doctor, Jared Skowron, urged parents to try chelation as soon as possible, or, as he put it, “Today. Not tomorrow. Today. Let me rephrase the question. When is the right time to help my child? The answer is always today. Toxicity is a serious issue that shouldn’t be ignored.”
Alycia Halladay, the chief science officer at the Autism Science Foundation, says that quick-fix treatments can be as alluring as they are misleading. Referring to organizations like Generation Rescue, she says, “It appears as though they’re directing families away from those that are evidence-based in favor of those that are not. Some of them could be unsafe. That’s the concern.”
In a brief phone conversation, Zack Peter, 25, Generation Rescue’s current executive director, asked what Jezebel’s “angle” is for this story. He added that our coverage has “not been favorable” to GR. (Jezebel wrote about Generation Rescue once in 2013. We’ve covered Jenny McCarthy fairly regularly, including her anti-vaccine statements.)
Peter agreed to look at a question list sent via email, but then did not respond to any of the questions or a follow-up email by the time of publication. The medical experts and companies cited in this story who have partnered with GR in various forms were also contacted for comment. Most did not reply.
In the past year, McCarthy, an actress and model, has experienced a professional career resurgence. After being known for the past decade primarily as the celebrity face of the anti-vaccine movement, McCarthy is edging back into a much more flattering limelight. She’s one of the judges on The Masked Singer, a surprise hit for Fox. She has a show that airs every weekday on Sirius XM. She was a guest on Dick Clark’s Rockin New Year’s Eve. And her relationship with husband Donnie Wahlberg spawned a reality show and has been lavishly covered by celebrity-oriented media outlets, doing perhaps more than anything else to re-integrate her into the famous person ecosystem. (As of 2016, Wahlberg is also listed as an unpaid board member on Generation Rescue’s executive board.)
But every career upswing for McCarthy is also accompanied by a reminder of her anti-vaccination beliefs, which have been the true centerpiece of her public life. (It’s also particularly rich that McCarthy is experiencing her latest burst of fame at a time when there has been yet another serious measles outbreak in the United States, one that researchers believe was fueled in part by deliberate disinformation around vaccine safety.)
In 2005, McCarthy and her then-partner Jim Carrey wrote in a CNN op-ed that they had cured McCarthy’s son Evan of autism. McCarthy claimed that Evan, then five years old, recovered due to “starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines.”
The op-ed also suggested a link between vaccines and autism, writing, “We wish to state, very clearly, that we are not against all vaccines, but we do believe there is strong evidence to suggest that some of the ingredients may be hazardous and that our children are being given too many, too soon!”
McCarthy and Carrey’s ideas about precisely how to treat her son—the special diet, the vitamins, the anti-fungals—didn’t spring from nowhere. Generation Rescue, then in its infancy, was instrumental.
Generation Rescue was founded in the spring of 2005 by a businessman named J. B. Handley and his wife Lisa, and they’ve said the organization was created as a result of their own child’s autism diagnosis. Soon after, McCarthy discovered Generation Rescue; Handley told PBS in 2015, “Within weeks of the site going up, literally within weeks, Jenny found the site. She credits it with initiating the treatment for her son, who has recovered, and she’s been with us almost ever since.”
For both McCarthy and the Handleys, a child with autism was a direct and permanent route to both anti-vaccine beliefs and a public role as self-appointed health advocates. The Handleys and McCarthy all say their children developed regressive autism after being vaccinated. The purported vaccine-autism connection also, as Handley explained to PBS in 2015, became their way of getting media attention:
What you quickly realize when you’re trying to advocate for autism is the only thing that anybody wants to talk about is vaccines. The reason for that is that it’s a great media story. It’s a remarkable conflict. It’s a red-hot conflict, and you can’t help but get picked up by the mainstream press when you’re talking about the issue. So immediately we realized that the minute we put the word “autism” and “vaccines” together, everybody would be listening, and that’s great, because the truth is — and any public health official will tell you this — vaccines have great benefits, and vaccines have great risks. I fully accept the former, and our public health officials wish the latter didn’t exist, and that’s just not reality.
There is a mountain of evidence to suggest that vaccines do not cause autism, and the science blog Respectful Insolence points out that Handley’s explanation for exactly how the vaccines had caused the autism has shifted over time. Originally, Generation Rescue’s webpage claimed that vaccines containing thimerosal, a mercury-based preservative, were giving children mercury poisoning, writing in 2005:
Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.
Thimerosal was taken out of most childhood vaccines by 2001 (not because it has any demonstrable negative health effects, but out of an abundance of caution by the CDC, and a desire not to give parents any reason to fear vaccinating their kids). Over time, as Respectful Insolence demonstrates, the explanations GR provided shifted, attributing autism and other “environmental illnesses” to “heavy metals, live viruses, and bacteria,” as the site put it, a few years after its founding.
But both the Handleys and McCarthy have also claimed that their children have functionally recovered from autism, which is a key difference between GR and most reputable autism-related organizations. Handley’s line, as he’s repeated in a book, How to End the Autism Epidemic, and on his blog and and TV appearances with friendly outlets like the ultra-conservative Sinclair Media, is that autism is “preventable and reversible.”
(On his website, Handley says that he is “retired from public life and is no longer available for media interviews,” though he continues to blog about autism recovery and make the same claims about the condition’s reversability. He refers people visiting his webpage to contact Generation Rescue instead. Emails sent to four addresses listed in public records as belonging to Handley bounced back. A potential phone number for him appeared to be disconnected.)
McCarthy became president of Generation Rescue in 2008. Since then the organization has continued presenting slightly shifting explanations for how vaccines cause autism, as well as what to do about it. They’ve also tried, not successfully, to shift the public understanding of the health effects of vaccination. As Vice’s Motherboard noted in 2016, the organization quietly funded a study that claimed to show that unvaccinated children were less likely to develop autism and other disorders, which was provisionally accepted by a medical journal. After a social media outcry, the study was put back under review, and ultimately rejected, with the journal citing “severe limitations in the validity of the results.” (The study purported to show that unvaccinated kids had fewer allergies and neuro-developmental disorders, but it wasn’t remotely methodologically sound; it was, instead, an online anonymous survey completed by mothers in four states, who’d been forwarded the survey by homeschooling organizations. A self-reported survey doesn’t take the place of a real, rigorous, double-blind study.)
Generation Rescue also has a board of directors and numerous “angel investors,” brand partners, and “community partners.” The difference between those designations isn’t clearly delineated, either on their website or in their tax forms; however, many of the products these companies sell come in for glowing coverage by Generation Rescue in articles on their site.
McDonald served as Generation Rescue’s executive director for roughly 10 years, ending in October of 2018. According to GR’s tax forms, she’s also connected to a consulting firm called Candyland Brands LLC, and the company’s name is in her email address. (Candyland’s listed address is also an address listed for McDonald’s husband, who is named David Dobkin.)
According to tax records, McDonald earned a salary of over $100,000 in 2013, 2014, 2015, and 2016, the only years for which tax information is publicly available for Generation Rescue. During 2013, 2014 and 2015, Candyland Brands was also paid over $100,000 per year in consulting fees. Additionally, in 2015 and 2016, GR paid rent to Candyland Brands, McDonald’s LLC, $27,225 in 2015 and $12,600 in 2016. “Office was relocated to guest house of executive director temporarily,” a note in the 2016 tax filing reads, “until reasonable office space can be found.”
Overall, Generation Rescue seems to have been a lucrative venture for McDonald. According to their 2016 tax filings, McDonald was paid her highest-ever salary, $158,000, that year along with a $51,000 bonus, what was referred to in the filings as “performance percentage” that was “contingent on the revenue of the organization.”
And that’s not even counting the lollipops.
These days, Generation Rescue suggests, sells, and blogs about a dizzying range of potential autism “cures” and quick fixes: Very recently, it presented raw camel’s milk as a potential autism treatment. (There’s no medical documentation that camel’s milk does that; there is, however, a patient report that was published in a medical journal in 2013, in which a mother claimed that she saw an “overnight improvement” in her son’s autism symptoms after she started giving him the milk.) The organization has also recently enthused about CBD oil, another product that still hasn’t actually been evaluated as a potential treatment for autistic kids. GR has a habit of writing gushing blog posts about new “innovative therapies” without mentioning what, if any, scientific basis they might have. (The FDA says camel milk and essential oils “have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.”)
GR has also promoted one product well after the FTC has scolded that product’s manufacturer for making misleading claims. A company called NourishLife was sued by the FTC in 2015 for claiming their supplements could help children with speech disorders, including those caused by autism, and that it was “clinically proven” to work. (The FTC said that many glowing parent testimonials were from parents who’d been given the product for free and a purported “research site” showing its amazing effects was “owned and run by NourishLife.”)
In 2016, well after all this was made public, NourishLife became a “corporate partner” with GenerationRescue. NourishLife still sells a nutritional supplement called Speak, but has dialed down the claims about what it will do.
Sometimes, too, the organization promotes treatments that have been outright debunked or decried as dangerous. One especially glaring one is hyperbaric oxygen chamber therapy, which is an approved and scientifically sound treatment for deep-sea divers suffering from decompression sickness. The theory that it could treat symptoms of autism has been promoted by a family medicine doctor named Dan Rossignol, who has theorized that autistic children suffer from inflammation in the brain that could be treated with hyperbaric oxygen therapy. (He was the lead author on a 2009 study which claimed that autistic kids who underwent 40 hourly sessions saw “significant improvements in overall functioning, receptive language, social interaction, eye contact, and sensory/cognitive awareness compared to children who received slightly pressurized room air.” One analysis of the study pointed out that since Rossignol himself provided hyperbaric oxygen chamber therapy treatments in his practice, he stood to benefit financially from proving its effectiveness.)
But the Association for Science in Autism Treatment calls hyperbaric oxygen therapy a “glaring example” of pseudoscience in autism treatment, pointing out that numerous other studies have shown mixed—at best—results for the therapy. The FDA says it’s not a recommended or proven therapy for autism (or cancer, or diabetes, or migraines, or any number of other things it’s been hailed as a miracle cure for).
Despite all this, GR has written about hyperbaric oxygen chamber therapy for at least eight years, since 2011. Specifically, they have at least three times between 2014 and 2016 recommended products from a company called OxyHealth. OxyHealth’s president is Samir Patel, who joined Generation Rescue’s Board of Directors in 2015. (Patel was listed as a board member on the organization’s 2016 tax forms, but as of 2019 he’s no longer listed as a board member on the GR website; their most recent tax forms are not yet publicly available. Patel didn’t respond to a request for comment sent through OxyHealth.)
Generation Rescue never at any point disclosed that they were recommending a product sold by a board member’s company. At-home hyperbaric oxygen chambers can cost over $20,000 through OxyHealth.
Generation Rescue has also, for obvious reasons, never mentioned that OxyHealth was sued by a family who alleged that one of their chambers was responsible for the death of their 19-year-old son, Jarred Bryan Sparks, who died in 2011 while inside a hyperbaric oxygen chamber at the family home; according to court documents, Sparks asphyxiated. The Sparks family sued OxyHealth, alleging the company had provided inadequate information about the dangers of potential asphyxiation using their products, but a Florida court ultimately found the company not liable.
Patel, McCarthy, and Generation Rescue were also separately sued by a contractor in Illinois in 2017, who alleged the organization stopped paying for work on a planned “integrative health” clinic, one of two GR said they planned to build. The construction has never been completed and the clinic has never opened. The unfinished building was relinquished to the contractor in 2018.
In the past two years, Generation Rescue has stopped recommending OxyHealth specifically—and Patel hasn’t been mentioned on their website—but it hasn’t stopped recommending the therapy itself. In 2017, GR provided a glowing breakdown of the hyperbaric oxygen chamber treatment, without mentioning the FDA says it’s unproven for treating symptoms in autistic kids, as well as potentially unsafe. And it named Rossignol himself as GR’s “recommended expert” for the treatment. He’s listed elsewhere as a member of GR’s Science Advisory Board.
If treating the symptoms of nail-biting, dyslexia, ADHD, asthma, anxiety, depression, tinnitus, and a plethora of other disorders with a lollipop sounds far-fetched, that’s because it probably is. The maker of these evidently miraculous B12 lollipops is a man named Stan Kurtz, a past president of Generation Rescue and the co-founder of a company called revitaPOP. As the science blog Left Brain Right Brain discovered in 2011, Kurtz also filed a patent application for a “methyl B12″ nasal spray. Perhaps unsurprisingly, in 2011, Generation Rescue hailed nasally-administered methyl B12 as something that could potentially treat symptoms of autism in autistic kids and even help with their “improvement of language.”
Candace McDonald—Generation Rescue’s immediate past executive director— lists herself as an “owner” of revitaPOP on her Facebook page. McDonald appears to be married to the other co-founder of revitaPOP, David Dobkin. As previously mentioned, she also served as Generation Rescue’s executive director for 10 years, until October 2018. (McDonald didn’t respond to an emailed request for comment.)
Generation Rescue has, unsurprisingly, sold the revitaPOPs in their online store, though the page (and the entire store) was taken offline, apparently in the spring of 2017. GR also previously listed the revitaPOPs company as a “partner.”
In 2014, they ran a testimonial from a mother claiming the lollipops had cleared up her son’s eczema. It also appears that families who applied for Generation Rescue’s grant program were given supplements that included revitaPOPs.
A special lollipop is, unlike a hyperbaric oxygen chamber, not a potential safety risk. But it’s also not a miracle cure: the Association for Science in Autism Treatment says that a study of B12’s effects found “little evidence of positive effects on behavior.” Moreover, ASAT adds, “No well-designed studies have evaluated other vitamin and supplement therapies for individuals with autism spectrum disorders.”
That would come as a surprise to parents relying on Generation Rescue for their medical information; the organization frequently touts various supplements and vitamin treatments and occasionally—as Respectful Insolence noted all the way back in 2011—a specially branded blender.
The message that diet and nutrition are somehow a miracle cure for autism can have actual health effects. Alycia Halladay of the Autism Science Foundation says the issue is potentially giving kids, be they autistic or neurotypical, an excessive dose of any one vitamin.
“I don’t have any objection to giving your kids a regular multi-vitamin,” she says. “I do it. They’re by prescription and not over the top. But sometimes we’re talking about 10 to 20 times the dose you see in a regular vitamin.”
The Autism Science Foundation also notes that some vitamins, like Vitamin A, can be toxic when taken in high doses for a long period of time, and that children on the special casein-free diet that Generation Rescue frequently promotes have been found to have lower bone density than control groups, which could lead to osteoporosis.
Another product Generation Rescue has promoted many, many times is IonCleanse, a footbath that claims to be able to pull harmful “toxins” from the body. (The word “toxin” is frequently used in an imprecise way in the world of alternative healing.)
A 2012 study found that the IonCleanse apparently did no such thing: “Contrary to claims made for the machine, there does not appear to be any specific induction of toxic element release through the feet when running the machine according to specifications.”
Nonetheless, Generation Rescue has been bullish on the foot baths, which run close to $2,000 for an at-home kit. It’s one of numerous products that has been sold at the Generation Rescue-run Autism Education Summit, and it’s credited with truly miraculous improvements in children’s health by parents who are quoted in glowing testimonials on the GR website.
Those articles don’t mention that IonCleanse is a listed Generation Rescue sponsor, namely an “angel investor,” which GR says on their website is an organization that donates “at least $25,000 annually to our general fund.”
Besides touting questionable, unproven, and sometimes dangerous therapies, Generation Rescue also provides a platform for medical experts, some of them with checkered track records, all of them with their own products to sell.
The most eyebrow-raising is Dr. Anjum Usman, a physician based in Illinois who has been quoted as a medical expert on Generation Rescue’s website and other materials since at least 2011. (She appears to use both “Anju” and “Anjum” publicly. Her last name is now Usman Singh, but was previously Usman at the time of the events described below.)
In 2011, the Illinois Department of Financial and Professional Regulation (DFPR) filed a complaint against her, charging that she’d subjected a 7-year-old Chicago boy to a battery of unproven treatments, including chelation, hyperbaric oxygen chamber sessions, a hormone suppressor and, per the Chicago Tribune, “nearly three dozen vitamin, enzyme, mineral and dietary supplements.” The department’s complaint alleged she’d demonstrated an “extreme departure from rational medical judgment.”
In 2014, Usman Singh was also found by the DFPR to have failed to disclose that she had a financial interest in both the hyperbaric oxygen chamber company she used as well as the compounding pharmacy that filled her prescriptions. Usman Singh signed a consent agreement that didn’t require her to admit fault; instead, she paid a $10,000 fine, and agreed to probation and to submit her charts for review to another physician 10 times a year. Records show that Usman Singh was also publicly reprimanded by the Medical Board of the California Department of Consumer affairs in 2016 over the same Illinois allegations, and required to enroll in a professionalism program to maintain her license to practice medicine there.
Throughout it all, Usman Singh continued to be one of Generation Rescue’s go-to medical authorities. She was interviewed in 2018 and claimed that autistic children might be particularly susceptible to parasites and bad bacteria in the gut.
“There is zero scientific evidence that those with autism are more susceptible to gut parasites,” responds Alycia Halladay of the Autism Science Foundation. “The theory around ‘bad bacteria’ is being studied, but I would like to hear a response to what they mean by ‘bad bacteria.’ E. coli? Definitely not. There are studies looking at the colonies of microorganisms in the intestines, but scientists would never categorize them as ‘good’ or ‘bad’ at this point.”
Usman Singh hasn’t faced any further formal complaints, and her license to practice medicine is active. Deepak Singh, Usman Singh’s husband and the person in charge of finances at her medical practice, True Health Medical Center, says that her probation only lasted a year, after which it was “released.” While Dr. Usman Singh was a member of Generation Rescue’s advisory board, he says, she hasn’t been for “at least three years.”
Singh also claims that his wife’s treatments were not harmful to the 7-year-old Chicago boy. “The patient was not ill. There was no harm to any patient.” He adds that the child “actually got better. He was able to verbalize and do a lot of the things he couldn’t do before. I can’t go into a patient’s medical history, but they dropped the case,” meaning a civil case the boy’s father was pursuing against the doctor. (The father, James Coman, said through his attorney in 2014 that he had voluntarily dismissed the suit, but intended to refile it; it doesn’t appear he ever did.)
In response to a question from Jezebel, Singh said that Dr. Usman Singh does still prescribe hyperbaric oxygen therapy to some patients.
“It varies,” he says. “If there’s inflammation, we know it works for chronic inflammation. Unfortunately, there’s no cookie cutter solution or treatment for any of these kids.”
Singh says that Dr. Usman Singh has spoken at Generation Rescue conferences for free, and that her role on the medical advisory board mainly concerned giving input on what topics should be covered at the conference. She stepped down from that board, he says, when she became too busy with her own practice.
“If you do something derogatory about Generation Rescue, that’s fine,” he told Jezebel. “But if you want to drag the doctors into it, that’s unfortunate. I hope you’re sensitive to that, because it impacts thousands of kids. The organizations don’t matter to us; what matters is sharing information with the parents.”
Dan Rossignol is, as mentioned above, the lead author of the study claiming that hyperbaric oxygen chambers could be an effective treatment for autism. He’s also on Generation Rescue’s science advisory board, and he has a special connection to Dr. Usman: he was the other person sued in connection with the 7-year-old’s treatment. Rossignol and Usman were, per the Chicago Tribune, both participants in the Defeat Autism Now! movement, created by an organization called the Autism Research Institute. DAN! was a controversial doctor network whose participants were known to often prescribe chelation. Rossignol was alleged to have prescribed chelation treatments to the child over the phone, without having met him in person. (Rossignol did not respond to a request for comment sent to Rossignol Medical Group, his current practice.)
DAN! was discontinued in 2011, but Rossignol is now president of its descendent, the very official-sounding Medical Academy of Pediatric Special Needs (MAPS). Families who apply for a grant through Generation Rescue will only be seen by a MAPS-certified doctor. A look at the MAPS directory shows that not all of them are MDs, but naturopaths, nutritionists, or dietitians; virtually all MAPS doctors, according to one group for parents of autistic kids, recommend the gluten-free, casein-free, soy-free diet (despite its questionable track record of success).
MAPS also lists OxyHealth, the hyperbaric oxygen chamber company, as a corporate sponsor, meaning that parents will likely also be directed towards hyperbaric oxygen therapy as a treatment. It’s a complementary system: a charity that directs parents to an organization that will, inevitably, direct parents back to other products, services and supplements that Generation Rescue recommends.
It does appear that in the past two years or so, Generation Rescue hasn’t touted any products owned by current board members. They’ve also, as mentioned, apparently discontinued their online store. Because they didn’t reply to our request for comment, we don’t know for sure what’s driving some of their more recent decisions, like phasing out the store or putting the grant program on hold.
What we can consider, instead, are the recommended best practices and generally-agreed on ethics for nonprofits. Rikki Abzug is a professor of Management at the Anisfield School of Business at Ramapo College, and she’s studied and written about nonprofit management, best practices and ethics for years.
“In general, what I would say in terms of best practices is always going to be transparency,” she tells Jezebel. A nonprofit should always have a clearly defined and publicly available code of conduct, she says, as well as an annual report to show their donors. (Jezebel asked if Generation Rescue has either of those things and could see them; it’s one of the questions that current executive director Zack Peter did not respond to.)
Anything that looks like self-dealing should be disclosed and explained, Abzug says, less because something might be actively illegal and more because it often just doesn’t look great.
“Ultimately, the question is what kind of impression are you making, particularly if you’re highly dependent on the public for donations?” Abzug asked, hypothetically. “Would you be comfortable with your decision-making process if it was flashed on the front page of the New York Times? That’s how we teach ethics in all organizations: If you’re not comfortable with sunlight, you need to rethink the ethics involved in what you’re doing.”
While Generation Rescue’s focus on total autism “recovery” is misleading, there are actual therapies and treatments that have shown promising results in helping people with autism in their day-to-day lives. But what a realistic and positive end goal is—how you define “helping” someone—is a genuine and ongoing controversy in the autism community.
For children with autism, intensive behavioral programs, known broadly as ABA (“applied behavior analysis”), are most often the recommended approach.
“What is known be effective in treating the core symptoms of autism is behavioral interventions,” says Halladay of the Autism Science Foundation. “There are some ones with specific names, but they are all similar in that they work on individual skills to encourage adaptive behavior in a flexible manner through techniques that focus on improving social communication and interaction. They take time and lots of effort by skilled clinicians. Behavioral interventions may also improve cognitive ability.”
For some children, antipsychotics like risperidone are sometimes also prescribed, a method which can be controversial. And behavioral interventions themselves are also controversial with self-advocates in the autism community, who say that some therapies or clinicians are inappropriately focused on making people “look less autistic,” for instance by discouraging stimming, a repetitive motion that people with autism can find helps soothe them or improve their focus. Instead, organizations like the Autistic Self Advocacy Network say that ABA should focus on imparting skills that can genuinely make life easier for people with autism and developmental disabilities, like helping to cope with anxiety or sensory overload or improving social skills in children. The use of restraints and isolation, which used to be a regular feature of ABA, are now supposed to be sparingly used, according to the Association for Behavior Analysis International, and only when absolutely necessary and as part of a clearly laid-out behavioral plan.
For parents who do choose behavioral intervention, Halladay says, they can take a while. “Some clinicians say you should see some sort of improvement in a couple weeks, but sometimes they can take longer.”
That’s why, Halladay adds, “these ‘quick fixes’ are so appealing”—because they promise to work nearly instantly. Furthermore, she adds, “The idea that you can completely reverse or eliminate all symptoms of autism with one type of therapy is unrealistic.”
Halladay does note, though, that GR doesn’t necessarily oppose behavioral therapies too. (For instance, they’ve recommended stem cell therapy, a more experimental treatment, by saying it can help ABA work better. However, most experts agree that stem cell therapy as a treatment for autism is in its infancy, with any serious research really just beginning. GR recommends a clinic in Mexico which claims to use stem cell therapies to treat autism. Its treatments aren’t approved by the FDA, as the clinic clearly notes.)
“They don’t necessarily encourage—nor do they discourage—some of these more evidence-based behavioral intervention,” Halladay says. “They’re non-committal. The families could still receive occupational and speech therapy and be enrolled in ABA and also getting all these things [that Generation Rescue recommends] and seeing improvements in behavior.” But any reported improvements, she says, seem to be credited to GR products alone. “They’re attributed to vitamins and chelation and the minerals and detox and hyperbaric chambers. I actually can’t comment on the success rates, I don’t even know if they’re believable because I don’t see any data.”
On their website, Generation Rescue claims that children who participate in their grant program show improvements, including a “43% improvement in sociability” and a “35% improvement in sensory and cognitive awareness.” But, as Halladay says, the source of those numbers, and how a percent improvement is actually measured, isn’t clear. A link below those stats, titled “learn more,” just leads back to a link to apply to the grant program.
Generation Rescue also doesn’t seem deeply engaged in the latest discussions and even controversies in the autism community, though. And while they regularly hype a hot new thing—CBD, camel’s milk—it’s tough to imagine that parents would come away from their materials genuinely better informed about their options.
In fact, GR has, from the start, focused instead on the idea that parents will innately know what’s right for their kids. In some ways, that’s their most insidious sales pitch of all.
A key element of Generation Rescue’s message to parents is that families of autistic kids have a gut intuition, especially mothers. McCarthy coined the phrase “Mother Warrior”—also the title of her 2008 book—to refer to a kind of mother who fights everyone, including the medical establishment, to care for their child. In a blog post she wrote in 2012, McCarthy described the kind of parent she had in mind:
A Mother who hears there is no hope for her child and, instead of retreating and mourning, breaks down walls, weaves her way through Obstacles, follows her intuition even when people tell her she is crazy. She is a mother who believes in hope. A mother who believes in miracles and is able to carry on with strength and determination, even when her partner doubts her and offers no support. A mother who never gives up when she keeps hitting dead ends. These are the women who will continue to open the door so future generation of children don’t have to suffer. These are the mothers with hearts of gold and shields made of the strongest armor.
It’s a skillful description, particularly because it relies on the idea that it’s normal, natural, and common for those around you to think the Mother Warrior is “crazy” for her natural, God-given intuition, which will surely, if not always smoothly, lead her in the right direction. (It’s also a clever way to assure some parents that their belief that vaccines are harmful is probably correct, even though the entire medical establishment tells them they aren’t.)
And when one instinct, one gut feeling, one hoped-for quick fix doesn’t pan out, parents are encouraged by organizations like Generation Rescue to pin their hopes on the next new thing.
“I call this whole thing whack-a-mole,” says Halladay of the Autism Science Foundation. “Science can disprove one theory and then Generation Rescue will just have another, and then that will be disproven and they’ll have another.”
But she has endless compassion for families of autistic kids, and points out that unproven treatments—all of them—rely on families’ desperate hopes to treat their kids.
“I would never criticize a parent,” she says. “They wouldn’t spend all this money on treatments—even ones that don’t work—if they were not trying to do the best they can for their kids.”