Autism Policy and Politics

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

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.

A California-based physician and the two companies he controls have settled charges of deceptively advertising that “amniotic stem cell therapy” can treat serious diseases, including Parkinson’s disease, autism, macular degeneration, cerebral palsy, multiple sclerosis, and heart attacks.

The settlement prohibits the defendants from making these and other health claims in the future unless the claims are true and supported by competent and reliable scientific evidence. The settlement also imposes a partially suspended $3.31 million judgment and requires the defendants to notify current and former patients about the order within 30 days.

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According to the Commission’s complaint, Dr. Bryn Jarald Henderson, D.O. and the two companies he owns and operates, Regenerative Medical Group and Telehealth Medical Group, earned at least $3.31 million offering stem cell therapy between 2014 and 2017. Initial stem cell therapy injections ranged from $9,500 to $15,000, with patients encouraged to undergo multiple treatments. Follow-up “booster” treatments cost between $5,000 and $8,000 each.

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Advertising on the website stemcell.life, the defendants even claimed that the therapy could restore the vision of blind patients, citing the case of a “101 year old Lady once blind for 7 years” who, thanks to stem cell therapy, could see again. The website’s homepage boasted that the therapy could “reverse autism symptoms.”

The proposed order settling the FTC’s charges prohibits the defendants from misrepresenting that any product or service: 1) cures, mitigates, or treats any disease or health condition, including Parkinson’s disease, autism, multiple sclerosis, cerebral palsy, traumatic brain injury, heart disease, macular degeneration, chronic kidney disease, osteoarthritis, and stroke; or 2) is comparable, or better than, conventional medical treatments in treating any health condition, unless such claims are true and can be supported by competent and reliable scientific evidence.

Like a growing number of people today, Ms. Phoenix has taken a total natural healing approach toward treating her child: A gluten-free diet. Supplements. Sensory integration. Auditory integration.

After Kasey seemed to have favorable results with craniosacral therapy, a form of massage, Ms. Phoenix went to school to be trained in this technique. What originally began as an effort to save money turned into a career as an acupuncturist with her own practice, Clear Light Acupuncture, in her home.

The mother also tried experimental treatments, many of which are not approved by the United States and cost thousands of dollars.

“I’ve walked into bars at midnight with a coffee can and her picture to try to raise money for her,” she said, noting other people, such as Ms. [Nicole] McDowell, also have helped her stage fund-raisers to pay for these costly procedures.

According to Ms. McDowell, a principal at You and Me School for Children with Autism in Edison, N.J., many parents of autistic kids turn to experimental treatments, “desperate to find anything that might improve their child in the slightest.”

While the Eltingville resident says she “can understand how these families feel about their children and how they’re willing to do almost anything,” as a BCBA, she counsels them against such therapies. Not only are they expensive, she said, but there also is no empirical evidence proving their effectiveness — though, it seems, Kasey did improve after two particular procedures.

Ms. McDowell explains that at age 4 Kasey had plateaued in identifying colors and only was able to determine the difference between red and blue after going to auditory integration therapy.

The second major advance happened when Ms. McDowell accompanied the family on a trip to the Bahamas, where Kasey, then 8, was injected with embryonic stem cells.

After that, she had a giant leap, from speaking one sentence to about 50, and being able to identify kids at her school, which she couldn’t do before.

While Ms. McDowell said she “cannot say the improvement was a direct result” of these therapies, the records she keeps on Kasey do show the girl had a boost in learning afterward.

“But again,” she stressed, “this is not supported by research at all.”

At one such facility, the Stem Cell Institute in Panama, stem cells from human umbilical cords collected from donors are used to treat autism.

The website promises: Stem cells are capable of regeneration and differentiation, once injected, they can "follow inflammatory signals from damaged tissues and have multiple ways of repairing those damaged areas."

My calls and emails to the institute went unanswered.

There are many unknowns when it comes to stem cell-based therapy and its potential to treat autism, said Dr. Michael Chez, director of Pediatric Neurology at the Sutter Neuroscience Institute in Sacramento.

Stem cell-based therapy is steeped in mystery for the average person, and they tend to think of it as a cure-all, said Chez, who also is Dylan and Devon Le's physician.

"Everybody has stem cells in their body, and as we age, they may be more and more difficult to access," he said.

Stem cells can't just be inserted into the body and magically evolve into a spare part or the thing you need it to become, he said.

"Many things have to happen first before they become able to change," he said.

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"A lot of people who are desperate might seek this out in other countries because they're not as regulated as this country is," Chez said.

He anticipates leading a controlled study involving cord blood and autism by the end of the year.

"A controlled study needs to be done looking at patients given essentially a placebo vs. the cord blood, and we are designing such a study," he said. "If anybody were to have done this anywhere, it would add validity to this type of treatment."

In the meantime, parents should be very cautious of offers of autism "cures" that proliferate on the Internet.

"There have always been people trying to offer false hope to people with autism," Chez said. "Unless it's being done in the U.S. or in a medical center in a controlled study or in some type of valid research study, be careful. Going anywhere outside of those environments probably means you're giving your money away without any kind of guaranteed success.

"I understand the desperation, but the Internet is not policed with scientific information."

"I've made some very strong comments which could potentially land me in court, but people still go to these clinics," said Professor Peter Coffey, director of the London Project to Cure Blindness at University College London. There are now several hundred clinics around the world which claim to have turned the potential of stem cells into effective treatments. They lure those suffering from diabetes, multiple sclerosis, heart failure, Parkinson's disease, autism, HIV, eye problems, spinal cord injuries and much else besides.

Several thousand people from around the world so far are estimated to have spent up to £20,000 or more in such places. Yet while stem cells could transform medicine, there is as yet scant actual proof of their efficacy. But still the tourists come.

The fact that scientists believe it is likely to be 15 to 20 years before the continuing worldwide flurry of trials and tests results in reliable treatments has not stopped clinics from offering exactly that already. Strong regulation means there are no such places in the UK or America. But the experts did single out the XCell Centre in Düsseldorf, Germany, and Beike Technology, which runs one in Shenzhen in China.

When a child dies of brain disease at Children's Hospital of Orange County, Philip H. Schwartz meets with the parents, explains his research and asks them to donate their child's brain to his quest for a cure.

"These are not easy conversations to have," he said. "There are expectations by parents that if they allow us to do that to their child, it will serve a useful purpose."

But for three years, the cells derived from many of those children's brains have been suspended in limbo, frozen in Thermos bottles. The nonprofit Southern California hospital has shut down the research, intimidated by a patent claim from the Palo Alto biotech company StemCells. The company's co-founder is esteemed Stanford stem cell scientist Dr. Irving Weissman, one of the world's most passionate advocates for giving scientists access to a field entangled by politics, ethics — and now money.

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"You can create the battle in a culture dish," said Schwartz, saying it could also benefit research into diseases like Alzheimer's and Parkinson's. "Autism — we don't even have a blood test. We don't understand what it is. In metabolic diseases that affect the brain, what is the sequence of events? What kills them?

"These cells can be used to help us get an idea."