How parents and caregivers can evaluate research into MERT and other potential autism treatments

As the number of diagnoses of autism spectrum disorders has increased over the past two decades, so has the number of experimental and off-label therapies attempting to treat the condition.

For parents navigating the complex and often contradictory landscape of autism interventions, while also balancing medical appointments, educational specialists, and myriad other family needs, evaluating these treatments can be daunting.

Experts in autism research spoke to The Times about what parents and patients should look for when evaluating a potential new treatment, for autism or another condition.

Take testimonials with a grain of salt

Firsthand accounts of the life-changing effects of a therapy can be very compelling. But such stories alone cannot indicate how effective a treatment will be for someone else, autism experts said.

“Be wary of therapies that sell you testimonials. If you go to a clinic’s website and they have dozens of quotes from parents saying, ‘This changed my child’s life in XYZ ways,’ that’s not the same as proof,” said Zoe Gross of the Autistic Self Advocacy Network, a nonprofit run by and for autistic adults.

“If something is advertised primarily through testimonials, it may be because there has been no research on it, or the research that has been done showed it to be ineffective.”

Without accompanying data, there’s no way to know whether a patient’s experience with a treatment is typical or an outlier. A therapy could have only a 1% success rate, Gross said, and still produce dozens of positive outcomes after thousands of people have tried it.

Doctors say the stories of previous patients can be a starting point for research into whether a particular therapy is right for someone, but the research should not end there.

“There’s an old saying in medicine,” said Dr. Andrew Leuchter, director of UCLA’s TMS Clinical and Research Service. “The plural of anecdote is not data.”

Search for and research

“It’s really sexy right now to call yourself ‘evidence-based,'” said Dr. David Celiberti, executive director of the nonprofit Assn. for Science in Autism Treatment. “As a consumer, that’s great. You hear ‘evidence-based,’ and of course you’re drawn to it. But people use that term very loosely.”

In the case of magnetic resonance therapy, or MERT, the developer Wave Neuroscience presents a library of research on its website. Similar links can be found on the sites of many licensed clinics.

Most of the autism publications cited by MERT clinics (and sometimes by Wave) are limited in scope or only tangentially related to therapy, according to a half-dozen experts, including some whose work is cited.

One of them is for example a short 2016 article of the Austin Journal of Autism and Related Disabilities entitled “The potential of magnetic resonance therapy in children with autism spectrum disorder.”

The authors and advisors said they were surprised to learn that the article was being used to promote the treatment. The article provides no data or original research and concludes only that MERT can be studied further as an autism therapy without risk of serious harm.

“This is not an evidence-based article. It’s an opinion piece about the potential of this technology,” said Dr. John Crawford, a neurologist at Children’s Hospital of Orange County and a co-author of the article. “It doesn’t make much of a scientific impact.”

Who else has verified these findings?

Many MERT clinics are presenting a 2014 electronic poster presentation examining data from the records of 141 children who received transcranial magnetic stimulation (the therapy on which MERT is based) for autism.

Until March, Wave posted the poster on its website, highlighting that 59.1% of the 44 participants who completed the 12 months of treatment had improved their scores on the Childhood Autism Rating Scale, an assessment tool used to measure the severity of symptoms.

A closer look at the report shows that after five days of treatment, 38 patients were removed from the analysis because their symptoms showed no improvement or worsened. One had a seizure during treatment.

The authors excluded dozens of patients for various reasons. Of the remaining 44 patients, 26 saw improvement while receiving treatment. That was 59.1% of the remaining, as the poster said, but only 18.4% of the total study population.

The report also notes that many of the 26 children were also receiving other therapies at the same time that may have been responsible for some or all of the improvements.

Posters are typically created to showcase findings at professional conferences and “should not be interpreted as if they have undergone rigorous peer review,” said Dr. Charles Liu, a neurosurgeon at USC and co-author of the poster who is not affiliated with Wave or a MERT clinic.

“The main point of the abstract is and remains that more rigorous studies are needed [be] finished.”

If research shows changes, how do you know the therapy caused them?

Wave and licensees also highlight a 2022 article by a technician at a licensee clinic in Australia who is also a PhD candidate at the University of the Sunshine Coast in Australia.

It looks at data from 28 patients at two MERT clinics in Australia, whose brains showed “significant improvement” in their individual alpha frequency waves after treatment.

Although previous research has shown a link between the frequency of atypical alpha waves and autism diagnoses, six scientists told The Times that there is not yet enough evidence to understand how changes in alpha waves affect autistic traits. Nor is there scientific consensus on whether ‘improvements’ in this pattern of brain activity have a meaningful effect on autistic behaviour.

The report is a retrospective medical record review, examining existing data from patients’ medical records. It is often used to identify interesting outcomes that merit further investigation.

By design, it does not include a control group, which allows researchers to identify whether changes they see are related to the variable they are studying. The authors noted in the paper that the findings are preliminary and require further study.

“Because this was not a controlled trial or study, [the cause of the changes] “It could have been anything from the placebo effect to any additional therapies the kids were getting, and so forth,” said Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health.

Medical research follows a hierarchy of evidence. At the bottom are anecdotes and observations: valid pieces of information that alone are not enough to draw broad conclusions.

Above that are observational studies, which systematically collect and analyze pre-existing data. And at the top are randomized controlled trials, which are designed to eliminate as much bias from the experiment as possible and ensure that the thing being studied is responsible for any observed changes.

“Families need to know that there is a gold standard for research. To be sure that something works to help people with autism, you need what is called a randomized controlled trial,” said Alycia Halladay, chief scientific officer at the Autism Science Foundation.

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