As diagnoses of autism spectrum disorders have increased over the past twenty years, so has the variety of experimental and off-label therapies to treat this condition.
For parents who must navigate the complex and infrequently conflicting landscape of autism interventions—while juggling doctor appointments, educational professionals, and countless other family needs—evaluating these treatments could be daunting.
Autism research experts spoke to the Times about what parents and patients should search for when evaluating a possible recent treatment – for autism or another condition.
Take testimonials with caution
Firsthand accounts of the life-changing effects of a therapy could be very compelling. But such stories alone cannot provide insight into how effective a treatment shall be for others, autism experts say.
“Be wary of therapies that are sold to you with testimonials. If you go to a clinic's website and there are dozens of quotes from parents saying, 'This changed my child's life in XYZ ways,' that's not proof,” says Zoe Gross of the Autistic Self Advocacy Network, a nonprofit group of and for autistic adults. “If something is promoted primarily through testimonials, it may be because there is no research, or the research that has been done has shown it is not effective.”
Without accompanying data, it's unimaginable to find out 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 yet produce dozens of positive results after hundreds of individuals try it.
Doctors say the stories of former patients is usually a start line for locating out whether therapy is correct for somebody. But the exploration shouldn't end there.
“There is an old saying in medicine,” said Dr. Andrew LeuchterDirector of the TMS Clinical and Research Service at UCLA. “The plural of anecdote is not data.”
Search for – and see – the 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. “For a consumer, that's great. When you hear 'evidence-based,' you're naturally drawn to it. But people use that term very loosely.”
In the case of magnetic resonance therapy, or MERT, its developer Wave Neuroscience offers a library of ResearchSimilar links could be found on the web sites of many licensed clinics.
Most of the autism publications cited by MERT clinics – and sometimes by Wave – are either limited in scope or only tangentially related to therapy, said half a dozen experts, including some whose work is cited.
One of them is, for instance, a brief article from 2016 from the Austin Journal of Autism and Related Disabilities entitled “The Potential of Magnetic Resonance Therapy in Children with Autism Spectrum Disorder.”
The authors and consultants said they were surprised to learn the paper was getting used to advertise the treatment. The paper comprises no data or original research and easily concludes that MERT could be further studied as an autism therapy without risk of great harm.
“This is not an evidence-based article. It is an opinion piece about the possibilities of this technology,” said Dr. John CrawfordNeurologist at Children's Hospital of Orange County and co-author of the study. “From a scientific point of view, it's not that significant.”
Who else has confirmed these results?
Many MERT clinics have a 2014 electronic poster presentation The project examines data from the medical records of 141 children who received transcranial magnetic stimulation for autism, the therapy on which MERT is predicated.
Until MarchWave posted the poster on its website, highlighting that 59.1% of the 44 participants who accomplished 12 months of treatment improved their scores on the Childhood Autism Rating Scale, an assessment tool used to measure symptom severity.
A more in-depth take a look at the report shows that after five days of treatment, 38 patients were excluded from the evaluation because their symptoms either showed no improvement or worsened. One suffered a seizure during treatment.
The authors excluded dozens more patients for various reasons. Of the remaining 44 patients, 26 showed improvement during treatment. That was 59.1% of those remaining, in keeping with the poster, but only 18.4% of the whole study population.
The report also notes that lots of these 26 children were receiving other therapies at the identical time, which could have been accountable for some or all the improvements.
Posters are typically created to focus on findings at skilled conferences and “cannot be considered to have undergone rigorous peer review,” says neurosurgeon Dr. Charles Liu of USC, a co-author of the poster who just isn’t affiliated with Wave or any MERT clinic.
“The primary point of the abstract is and stays that more rigorous studies are needed [be] Completed.”
If tests show changes, how do you know that the therapy caused them?
Wave and licensees also emphasize a paper from 2022 by a technician from a licensed clinic in Australia who is also a PhD student at the University of the Sunshine Coast in Australia.
The study examined data from 28 patients from two MERT clinics in Australia whose brains showed a “significant improvement” in their individual alpha frequency waves after treatment.
Although previous studies have found a link between the atypical frequency of 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, and there is no scientific consensus on whether “improving” this pattern of brain activity has any meaningful effect on autistic behavior.
The report is a retrospective chart review that examines existing data from patients' medical records and is usually used to discover interesting findings worthy of further investigation.
By design, the study doesn’t include a control group, which allows researchers to find out whether the observed changes are related to the variable under study. The authors identified of their article that the outcomes are preliminary and require further investigation.
“Since this was not a controlled study, [the cause of the changes] “The cause could have been anything, including a placebo effect, any additional therapies the children were receiving, etc.,” 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 information that alone is not enough to draw comprehensive conclusions.
In addition, there are observational studies that systematically collect and analyze existing data. And at the top are randomized controlled trials, which are designed to exclude as many biases as possible from the experiment and to ensure that the object being studied is responsible for all observed changes.
“Families need to know that there is this gold standard for studies – to make sure that something works to help people with autism, there has to be what’s called a randomized controlled trial,” said Alycia Halladay, scientific director of the Foundation for Autism Research.
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