Walking the Tightrope: The Daily Battle
Thomas VanCott compares his son Jake's experience with autism to life on a tightrope. Upset the delicate balance, and Jake, 18, plunges into frustration, slapping himself and twisting his neck in seemingly painful ways. Like many families with children on the autism spectrum, Jake's parents sought treatments beyond traditional speech and behavioral therapies. One that seemed promising was magnetic e-resonance therapy, or MERT, a magnetic brain stimulation therapy trademarked in 2016 by a Newport Beach-based company called Wave Neuroscience. The company licensed MERT to private clinics across the country that offered it as a therapy for conditions including depression, PTSD, and autism. Those clinics described MERT as a noninvasive innovation that could improve an autistic child's sleep, social skills and—most attractive to the VanCott family—speech. Jake is minimally verbal. It was expensive—$9,000—and not covered by insurance. "It's too much for most things," VanCott said, "but not for the potential of my child speaking."
The Desperate Search for Solutions
After raising money through GoFundMe, VanCott met with a doctor at a New Jersey clinic who described how MERT would reorganize Jake's brain waves. VanCott does not have a scientific background, and the technical details went over his head. What he had was a severely disabled son he was desperate to help. The doctor "seemed pretty confident. And his confidence gave me confidence," VanCott said. "It made me think, tomorrow Jake's gonna wake up and say a sentence." Autism diagnoses in children have risen steadily since 2000, in part due to increased awareness and screening. As the number of people living with autism has grown, so have alternative therapies promising to alleviate or even reverse its associated behaviors. "There's also a lot of pressure put on parents," said Zoe Gross, a director at the Autistic Self Advocacy Network.
The Allure of Magnetic e-Resonance Therapy
One therapy that often surfaces in Google searches, social media groups, and word of mouth discussions is MERT, which is based on a brain stimulation therapy approved by the Food and Drug Administration for depression and obsessive-compulsive disorders. Clinics offering MERT sell it as a "safe and effective treatment for autism" that yields "miraculous results" for kids on the spectrum. Most compelling to many families is an oft-cited marketing claim that research has shown MERT to improve speech and eye contact in a majority of autistic patients, research that several clinics attributed to Wave Neuroscience. The Times spoke to parents who said MERT caused positive, lasting changes in their autistic children's sleep, communication, and concentration. Other parents told The Times they saw only minimal changes in their children's behavior. Many, including Thomas VanCott, saw no changes at all. "It just did nothing," VanCott said. And a few saw worrying behavioral regressions that persisted long after the therapy ended.
The Lack of Conclusive Evidence
All remember being told by MERT providers that while results weren't guaranteed, many patients saw positive results. When the dramatic changes they hoped for didn't happen, these families left believing they were unlucky. Without quality data, it's impossible to know if any of these outcomes are outliers or typical patient experiences. Wave has not conducted any studies on whether its signature product works for autism. A Wave executive argued that the need for new autism therapies is strong enough to justify moving forward with commercial solutions before rock-solid evidence is available. "Academics pointing towards insufficient evidence for clinical adoption may not represent a true reflection of clinical utility in a population where there are very few therapeutic options, great suffering, and a willingness of physicians and patients to seek innovative treatment choices with diligent clinical care and oversight," said Erik Won, Wave's chief medical officer.
A Price Worth Paying?
For many parents, even a small possibility of a life-changing breakthrough is worth any price. Although some families have reported benefits from the treatment, no large scientific studies exist that show MERT is significantly better than a placebo, according to nine psychologists and neuroscientists with expertise in brain stimulation and autism. MERT is Wave's trademarked version of a therapy called transcranial magnetic stimulation (TMS). The product of decades of research, TMS is approved by the FDA to treat major depression, obsessive-compulsive disorder, and cigarette addiction. It is also used to treat conditions for which it is not FDA-approved, in what's known as "off-label" prescribing. Off-label usage of drugs and devices is a common practice in medicine. Clinics offering cash-pay TMS for a variety of off-label conditions, including autism, have proliferated in recent years. MERT in particular has become especially popular among families with autistic children.
Finding a Path Forward
Autism spectrum disorder is a complex neurological and developmental condition that manifests differently in nearly every individual who has it. Symptoms cluster around difficulties in communication, social interaction, and sensory processing. Many autistic people need minimal support to live, work, and thrive independently, while others require intense daily care and are unable to express themselves verbally. There are few evidence-based interventions to alleviate its most profoundly disabling traits. A MERT patient first sits for a 10-minute quantitative electroencephalogram, a noninvasive test that measures the brain's electrical activity, and an electrocardiogram, which gauges electrical activity in the heart. Results are then analyzed by Wave's proprietary software. If its algorithm identifies "areas of the brain that are not functioning properly," clinic providers will recommend a protocol of TMS-style treatments.
Weighing the Pros and Cons
In these sessions, the provider places a magnetic coil against the patient's scalp that emits a gentle electromagnetic pulse. Sessions typically last about 30 minutes and are administered five days a week, for two to six weeks. Won, Wave's president and chief medical officer, said the goal is "to help the brain function most efficiently as an organ." "As we sort of tested this, there was a realization: Wow, we can do something pretty special for autism," he said. A six-week course of MERT—the standard protocol Wave recommends for autistic patients—typically costs $9,000 to $12,000, families and clinic owners said, and is not covered by insurance.
Beyond the Hype: Parents' Perspectives
The Times spoke to parents who said MERT caused positive, lasting changes in their autistic children's sleep, communication, and concentration. Other parents told The Times they saw only minimal changes in their children's behavior. Many, including Thomas VanCott, saw no changes at all. "It just did nothing," VanCott said. And a few saw worrying behavioral regressions that persisted long after the therapy ended. To pay for the procedure, families have used savings, turned to crowdfunding, or even placed the treatment on credit cards. Their experiences vary widely. Though initially skeptical, some families have found that the treatment has brought about noticeable improvements. For others, it was an exhausting and disappointing journey.
The Ethical Dilemma
Critics argue that MERT providers operate in an ethical gray area. Doctors can use approved therapies to treat any condition they deem appropriate, but if the condition being treated isn't the same one for which the therapy has been cleared, providers must be transparent about the evidence they are relying on. If there is little to no evidence to support MERT's efficacy for a given condition, it is unethical for providers to advertise that it is effective. "If someone opts for an experimental therapy, that in itself is not problematic," said Anna Wexler, an assistant professor at the University of Pennsylvania who studies the ethics of emerging technologies. "What is problematic is if they are making that decision based on erroneous or incorrect beliefs about efficacy."
A Long Road Ahead
Medical research moves far more slowly than most patients and their families would like, and many are willing to try experimental therapies long before researchers and regulators are ready to sign off on them. "When you're a parent of a child and you think that this can help, it's like, FDA be damned," VanCott said. "If I think it's gonna help my kid, I want to do it." Wave's provider directory now lists more than 60 U.S. licensees and an additional 18 internationally. More than 400,000 MERT sessions have been administered to more than 20,000 people, according to the company. Won said Wave does not maintain comprehensive data on patients treated at licensee clinics. Despite his disappointment, VanCott does not regret his decision. Had he not pursued the treatment, he would always wonder whether he turned down something that could have helped his son—no matter how high the cost, no matter how slim the chance. The journey of finding the right treatment for a child with autism can be overwhelming. Parents often face a multitude of options, from traditional therapies to experimental treatments, each promising a new hope. It’s crucial to approach these decisions with a well-informed mind and a hopeful heart. Remember, every step taken is a testament to the unwavering love and dedication that drives parents to seek the best for their children. Your pursuit of solutions, no matter the outcome, reflects the incredible strength and commitment that defines your journey.
