What Most Autism Research Gets Wrong

Written by Suzanne Burdick, Ph.D. on December 2, 2024. Posted in Current News

Martha Herbert, M.D., Ph.D, a pediatric neurologist, neuroscientist and autism researcher since 1995, said autism research must take a whole-body approach if it’s ever going to accurately capture the disorder’s complexity. Herbert co-authored a study that seeks to do just that

Herbert — who has researched autism since 1995 — recently co-authored a scientific review on the neuroimmunology of autism.

In an interview with The Defender, she shared why the review matters and why she’s hopeful about future autism research.

After earning her medical degree from Columbia University, Herbert trained at Cornell-New York Hospital and the Massachusetts General Hospital at Harvard Medical School.

She also has a doctorate from the History of Consciousness program at the University of California, Santa Cruz.

She is the author of the public-oriented Harvard Health Publications book, “The Autism Revolution: Whole Body Strategies for Making Life All It Can Be,” and many scientific papers.

A “whole-body” approach is imperative to understanding complex chronic illnesses such as autism, Herbert told The Defender. That’s what she and her co-authors did in their recent scientific review.

Her co-authors include Brian Hooker, Ph.D., Children’s Health Defense (CHD) chief scientific officer, and Jeet Varia, Ph.D., CHD science fellow. Their review was published Nov. 11 on Preprints.org and is undergoing peer review with Development and Psychopathology, a Cambridge University Press journal.

The authors examined 519 studies to illustrate how autism spectrum disorder (ASD) affects multiple body systems, including the immune, digestive and central nervous systems.

Their findings pushed back against the notion that autism is a strictly neurological condition. The review also pushed back against the idea that ASD is largely driven by genetics.

Herbert and her co-authors contended that serious genetic problems causing autism are rare compared to common genomic vulnerabilities — as in, “subtle changes in single nucleotide base pairs” — that can trigger an individual’s latent vulnerability to environmental factors.

Those factors may include toxins in food, water, air, consumer products and electromagnetic radiation in the environment.

Herbert explained:

“Prior to the explosion of synthetic chemicals and synthetic wireless radiation in our world, people’s latent vulnerabilities to toxicities would have led to much less illness.

But with all the toxic, health-degrading exposures, more and more genomically vulnerable people are getting triggered into actual sickness.

And combinations of exposures can make illnesses more complicated and worse.”

The authors said the scientific evidence they reviewed suggests that people with ASD are the “canaries in the coal mine” — meaning they are responding to toxins in their environment that may “eventually reach us all.”

“I think that autism is a particularly strong ‘canary in the coal mine,’” Herbert said, “because the numbers jumped so much starting in the late 1980s.”

That’s when Congress passed the National Childhood Vaccine Injury Act of 1986, which gave vaccine manufacturers liability protection for “damages arising from a vaccine-related injury or death.”

Since 1986, the number of recommended shots on the childhood vaccine schedule has greatly expanded.

She emphasized that although exposure to chemical toxins — “like pesticides and various vaccine ingredients” — can trigger illness, so can exposure to wireless radiation. In 2013, she published two peer-reviewed papers (co-authored with Cindy Sage) showing why wireless radiation exposure was likely linked to autism.

Historically, she added, there’s been academic resistance to acknowledging the role environmental factors likely play in the development of ASD.

Herbert said academics were embroiled in what she called an “either/or standoff” between thinking ASD was driven by genetics or environment. In 2006, she was the lead author of a peer-reviewed paper in NeuroToxicology that challenged that mentality.

The paper promoted the concept of “environmental genomics” and suggested that certain people appeared to be more physiologically vulnerable to certain environmental factors, based on genomic differences.

Researchers must step beyond narrow either/or paradigms if they are to accurately describe real-world phenomena, Herbert said.

Unfortunately, the medical establishment has largely embraced a reductionist model that favors specialization in a niche area, rather than a systems biology model.

Systems biology is a “holistic approach to deciphering the complexity of biological systems,” according to the Institute for Systems Biology.

Herbert, who considers herself a “systems thinker,” said a lot of the medical research she witnessed was so narrowly focused that it missed the context and complexity of what it was trying to study.

She said:

“The contact I’ve had with people doing more conventional, constrained studies suggests to me that they take for granted that they are doing research that will eventually add up to a ‘cure’ — but they don’t really have a concept of how it will actually ‘add up.’

This is because their education hasn’t prepared them to appreciate how complex and interconnected the problem really is beyond their narrow peephole in their special area of interest.”

Herbert saw this when she reviewed grant proposals submitted to the National Institutes of Health. The NIH — the “nation’s medical research agency” — is part of the U.S. Department of Health and Human Services.

“My experience was that there might be one or a few brilliant gems,” she said. “But then the quality would steeply decline in the rest of the proposals because what they were asking for money to study wasn’t really that important or incisive and didn’t offer leverage into clarifying key questions.”

Herbert said the scientific review she and her co-authors conducted “rises above” the typical compartmentalization of academic papers by integrating many dimensions that are usually discussed separately.

“When integration is present,” she explained, “it is easier to see how one thing or factor in one domain can have a significant influence on something at another level or aspect of biology.”

Another major either/or paradigm she witnessed in past autism research was “metabolism vs. genes.”

“The training of medical doctors in the institutions where I studied — Columbia, Cornell and Harvard — was weak on metabolism.”

Herbert was fascinated by what she learned in child neurology about metabolic disorders. “But the textbooks limited the discussion to people at the tails of the curves — the people with severe genetic vulnerabilities that led to life-constraining or even life-threatening metabolic dysfunction.”

Once she started seeing her own patients, the kids and adults seldom had the severe genetic or metabolic disorders she’d been trained to diagnose. “Instead there was a flood of symptoms like allergies, rashes, digestive problems, sleep problems, chronic infections — and not only in people with autism, but also in a whole range of other psychiatric and medical conditions.”

That led her to study environmental medicine.

Herbert said narrow either/or paradigms in research “absolutely” favor pharmaceutical approaches for treating and/or preventing autism.

“People with these narrow perspectives had a hard time hearing other perspectives,” she said.

Pharmaceutical studies that narrowly focused on a drug’s performance typically had an easier time getting traction compared with those that looked at the broader context and complexity. She told this story to illustrate her point:

“I used to call up the Massachusetts General Hospital’s Clinical Research Center for help with issues arising in my federally funded research studies that were about learning what autism was and how it worked, and they would never answer my phone calls.

Then I got an offer to do a clinical trial with a small pharmaceutical company of a drug for ASD. I put in a call at 2:30 p.m. Friday and a senior person showed up in my office at 8 a.m. Monday.

She was particularly enthusiastic about the slush fund the drug companies have to provide in order to do the research in the institution.”

Herbert said the experience was an “aha” moment for her. “They really didn’t care about figuring out what was driving autism, or other complex illnesses. Just about revenue streams.”

Things got worse after the economic crash of 2008, she said. “The bottom fell out of a lot of research after hospitals had been overbuilding, and the hospitals and research centers were left emptyhanded and had to start renting to researchers and companies whose agendas left a lot to be desired.”

In the mid-2000s, Herbert led a multidisciplinary research program called TRANSCEND: Treatment Research and NeuroScience Evaluation of NeuroDevelopmental Disorders.

The program was a partnership among three women researchers who wanted to do a multidimensional investigation of autism and metabolism — including toxic exposures to things like pesticides — using three different brain imaging techniques: magnetoencephalography (MEG), electroencephalogram (EEG) and MRI.

Such a study would have required buy-in from the administration, but the institution failed to provide “the integrated infrastructure needed to carry out what we wanted to do.”

However, Herbert is now hopeful about the future of autism research.

In past decades “with [Dr. Anthony] Fauci having been a de facto research czar for so many years,” it was “hard to distinguish between the U.S. government and the pharmaceutical companies” when it came to controlling the autism research agenda.

But now Fauci has retired. On Nov. 15, President-elect Donald J. Trump nominated Robert F. Kennedy Jr. — who has long championed investigating the environmental factors driving the autism epidemic — to run the HHS.

Herbert said she hopes that “clear boundaries” between U.S. government research and the pharmaceutical industry “start to reemerge soon given the recent election.”

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Header image: Speech & Occupational Therapy of North Texas

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