How parents and caregivers can evaluate the research on MERT and other potential treatments

As diagnoses of autism spectrum disorder have increased in the last two decades, so have the number of experimental and off-label therapies seeking to address the condition. For parents navigating the complex and often contradictory landscape of autism interventions — while also balancing medical appointments, educational specialists and countless other family needs — evaluating these treatments can be daunting. Experts in autism research talked to The Times about what parents and patients should watch for when evaluating a potential new treatment — for autism or any other condition. Take testimonials with a grain of salt. Firsthand accounts of a therapy’s life-changing effects can be powerfully compelling.

But such stories alone can’t indicate how effective a treatment will be for anyone else, autism experts said. “Be wary of therapies that are sold to you with testimonials. If you go to a clinic website and they have dozens of quotes from parents saying ‘This changed my child’s life in XYZ ways,’ that isn’t the same as evidence,” said Zoe Gross of the Autistic Self Advocacy Network, a nonprofit group run by and for autistic adults. “If the main way something’s advertised is through testimonials, it may be because there isn’t research, or what research was done showed it wasn’t effective. ” Without accompanying data, there is no way to know whether any patient’s experience with a treatment is typical or an outlier.

A therapy could have only a 1% success rate, Gross said, and still yield dozens of positive outcomes once thousands of people have tried it. Former patient stories can be a starting point for an exploration of whether a therapy is right for someone, doctors said, but the exploration shouldn’t 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.

” Look for — and at — the research. “Right now, it’s really sexy 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 amazing.

You hear ‘evidence-based’ and of course, you’re going to be drawn to it. But people are using that term very loosely. ” In the case of magnetic e-resonance therapy, or MERT, its developer Wave Neuroscience features on its website a library of research. Similar links feature on the sites of many licensee clinics. Most of the publications related to autism cited by MERT clinics — and, at times, by Wave — are either limited in scope or only tangentially related to the therapy, a half-dozen experts said, including some whose work is cited.

One of them, for example, is a brief 2016 article from the Austin Journal of Autism and Related Disabilities titled “The Potential of Magnetic Resonant Therapy in Children with Autism Spectrum Disorder. ” Its authors and advisors said they were surprised to learn the paper was being used to advertise the treatment. The paper contains no data or original research and concludes only that MERT could be studied further as an autism therapy without risk of serious harm. “This isn’t an evidence-based paper. It’s an opinion piece about the possibilities of this technology,” said Dr.

Jo.