Unproven Autism Therapy Raises Ethical Concerns as Desperate Parents Seek Miracle Cures

Families with autistic children, desperate for a breakthrough, are turning to an unproven and expensive magnetic therapy that promises to improve speech, social skills, and other symptoms. However, the lack of scientific evidence and the high cost of the treatment have raised ethical concerns among experts.

Seeking a Lifeline for Autistic Children

The Allure of Magnetic Therapy for Autism

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. For many families, the prospect of a treatment that could alleviate these challenges is a tantalizing prospect, even if the evidence is lacking.One such treatment is magnetic e-resonance therapy (MERT), a magnetic brain stimulation therapy trademarked by a company called Wave Neuroscience. MERT is based on a brain stimulation therapy approved by the Food and Drug Administration (FDA) for depression and obsessive-compulsive disorders, but it has not been approved for the treatment of autism.Clinics offering MERT have marketed it as a "safe and effective treatment for autism" that yields "miraculous results" for kids on the spectrum. The promise of improved speech, social skills, and other benefits has drawn many desperate parents to seek out this treatment, despite its high cost and the lack of scientific evidence to support its efficacy.

The High Cost of Desperation

A six-week course of MERT typically costs $9,000 to $12,000, and it is not covered by insurance. Families have turned to crowdfunding, savings, or even credit cards to pay for the treatment, driven by the hope that it could be a life-changing breakthrough for their autistic children.Thomas VanCott, whose son Jake is minimally verbal, was one such parent. 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. Despite the high cost and the technical details going over his head, VanCott was desperate to help his son and decided to pursue the treatment."It's too much for most things," VanCott said, "but not for the potential of my child speaking."

The Lack of Scientific Evidence

While some families have reported benefits from MERT, the scientific community has expressed concerns about the lack of evidence supporting its efficacy for the treatment of autism. Nine psychologists and neuroscientists with expertise in brain stimulation and autism have stated that there is currently no evidence to suggest that this type of therapy can reliably prompt a nonverbal autistic child to develop speech or significantly alter an autistic child's sensory and communication abilities.The only study that Wave Neuroscience has cited to support MERT's effectiveness for autism was a small, unpublished study of 28 patients conducted around 2017 by the now-defunct Newport Brain Research Laboratory. This study has not been peer-reviewed or published in a scientific journal, and its findings have been criticized by experts as insufficient to establish the benefits of the treatment."The plain English is that it's not there yet, and I have not seen it working convincingly outside of a strong placebo effect," said Dr. Alexander Rotenberg, a professor of neurology at Harvard Medical School and director of Boston Children's Hospital's Neuromodulation Program.

Ethical Concerns Surrounding MERT

The lack of scientific evidence and the high cost of MERT have raised ethical concerns among experts. Anna Wexler, an assistant professor at the University of Pennsylvania who studies the ethics of emerging technologies, said that 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," Wexler said. "What is problematic is if they are making that decision based on erroneous or incorrect beliefs about efficacy."Experts have also criticized the pricing of MERT, with Alycia Halladay, chief science officer at the Autism Science Foundation, stating that families should not be paying $5,000 to $10,000 out of pocket for an unverified therapy.

The Desperate Search for a Miracle Cure

Despite the lack of evidence and the high cost, many parents are still willing to try experimental therapies like MERT in the hope of finding a breakthrough for their autistic children. The pressure to "fix" their child's condition and the desire to provide them with the best possible care can lead parents to make decisions that may not be supported by scientific evidence."When you're a parent of a child and you think that this can help, it's like, FDA be damned, right?" VanCott said. "If I think it's gonna help my kid, I want to do it."This desperation, combined with the promise of a "miracle cure," has fueled the proliferation of MERT clinics across the country, with Wave Neuroscience's provider directory now listing more than 60 U.S. licensees and an additional 18 internationally.

The Need for Rigorous Research and Ethical Oversight

As the demand for new autism therapies continues to grow, experts have called for more rigorous research and ethical oversight to ensure that families are making informed decisions. Researchers are currently examining whether transcranial magnetic stimulation (TMS), the technology underlying MERT, could improve certain symptoms of autism, but they have cautioned that the evidence base is not yet strong enough to recommend its use for the treatment of autism."Off-label treatment can be just fine so long as there's data to support this and the risks are low," said Dr. Andrew Leuchter, the director of UCLA's TMS Clinical and Research Service. "For autism, the evidence base is not very strong. And I don't think that there is sufficient evidence to recommend the use of TMS for the treatment specifically of autism."Until more robust scientific evidence is available, experts have urged families to be cautious about pursuing unproven and expensive treatments like MERT, and to instead seek out clinically validated interventions or participate in clinical trials that could provide valuable data to advance the understanding of autism and its treatment.