I was recently invited to appear on an episode of a nationally televised day-time television show. The subject of the episode revolved around the use of TMS in children with autism spectrum disorder, a topic that the producers, quite appropriately, determined that I had some expertise in. In addition to myself the other invited guests were the following: 1. A Neurologist promoting TMS as a “cure” for autism. 2. A mother of a young child with autism desperate for help with difficult problematic behaviors and a lack of communication. 3. A mother of a different child with autism who observed huge changes in her child following treatment at this specific Neurologist’s clinic.
I debated for a while whether I would accept this invitation. Before I agreed, I was informed by the producers who else would be invited and told that the show intended to offer the mother whose child had not previously undergone treatment a free series of treatments at the clinic for her child as a special surprise for coming on the show (a gift worth over $10,000).
I shared with the producers my thoughts and concerns, which I will express here, so that all involved understood my perspective on the subject. The producers expressed that they understood my perspective. They expressed that they wanted to present a balanced evidence-based show and recognized my background and knowledge of the scientific literature on the subject.
In the end I agreed to be on the show, a decision I still go back and forth on whether it was the right one or not, but I still stand by my decision. I believe parents need to be informed of the research (or lack there of) of any treatment that is being offered to their children, so that they can make an informed decision about the potential for benefit and the potential for risk.
Note that all statements here are paraphrased, as the episode was recorded over a month ago. Additionally, it has not aired yet, so I am not sure what will or will not be edited prior to airing.
The episode started out with an introduction of the Neurologist and the two mothers. It was clear that despite the producer’s intention to provide a “balanced” perspective, in the end, this show was meant to entertain, rather than inform. The mothers each told their stories about how difficult it was to raise a child with autism and how they would (like any mother) do anything that they felt would help their children. The one mother told her story, claiming that after visiting this particular Neurologist’s clinic her child was much calmer, told her mother that she loved her (after not previously speaking at all), and began to socially interact in a typical manner. In essence the mother indicated that her child no longer presented the core symptoms of autism. The Neurologist was then introduced as the putative hero in this story offering these mothers a “cure.” It was well into the episode that I was introduced as the Neuroscientist who has been studying the use of TMS in autism for over a decade. However, at this point the audience and certainly the two mothers of the children with autism were sold! It really didn’t matter what I said, because they had all the proof they needed in this single anecdotal report. Despite my best efforts to sound excited and passionate about Science, it certainly did not hold the same power as a parent’s personal story.
Nevertheless, I was posed the scripted question of, “Dr. Oberman, what is the evidence for TMS in autism?” To which I responded my equally scripted and practiced response that in fact there was very little (actually zero) evidence for the types of improvements that the Neurologist was advertising or that the mother claimed. I have never seen it in the hundreds of children with autism who have participated in any of my studies over the years. I explained that the randomized controlled trials that have been conducted (in fact there has only been one single, small scale randomized controlled trial (in adults) with autism) only showed very modest improvements in only a couple measures of social interaction. However, in an effort to not “throw the baby out with the bath water” so to speak, I added that TMS still holds great promise for not only autism, but a number of neurological, psychiatric and neurodevelopmental disorders.
My goal in participating in this episode was not to call this Neurologist out as giving false hope (though in promoting this as a cure, I honestly felt he misrepresented the potential for benefit) nor was it my goal to suggest that TMS was not useful in the area of autism, because I truly believe there is promise and have dedicated over a decade of research to exploring the potential for benefit in autism and for other populations. After my first brief statement, the hosts of the show, along with the Neurologist, quickly downplayed the need for science and research, because clearly, the mother of the child who had such a great response to treatment was all of the evidence that this other mother needed to convince her that it would be appropriate for her to try this on her child with similar challenges.
Though anecdotal reports are powerful and represent the individual’s singular experience, the scientific method exists because our perceptions are often not without bias and certainly a mother’s desire for her child to improve can often lead to perceptions of change where objective measures do not validate those changes. This is why, in well conducted clinical trials, the person who evaluates whether someone has gotten better or not is “blinded” to whether or not the person got the actual treatment or a placebo. I can say from personal experience that when parents of children with autism are asked following a TMS session whether they noticed anything different in their child, they will always report something and usually it is a positive improvement. Some say the child is calmer, others that they seemed more engaged, others that they slept better or ate better or were less anxious. The only problem is that these improvements are often equally common in both active and placebo participants. So is the mother’s biased perception? Or is it that the simple process of the study, bringing the child into a new environment, placing a device on their head, asking them to sit still for an hour…etc. has this affect independent of whether a magnetic field is discharged or not? I don’t know the answer. The only thing I can say is I am not convinced it is the TMS causing impact unless changes are shown in the active condition that are not shown in the “sham” or “placebo” condition.
Later in the episode, I was given another brief opportunity to provide a different perspective. I was asked, (paraphrased) “Ok, there is not much scientific evidence for benefits, but it couldn’t hurt to try, right? I mean this one child had a miraculous transformation, why couldn’t this other child experience something similar?” I was hoping to explain (though I still don’t think my message got through), that as a research field we are not promoting the broad clinical use of TMS in children with autism until further research is conducted. I explained that with clinical treatments there are not simply two options — that it works or doesn’t. If that were the case, worst case scenario would be you wasted your money and time on something that didn’t work. There are in fact several options. The intervention could make the child better, it could make the child worse, it could do nothing, or it could appear to do nothing or make the child better in the short-term, but lead to longer term risks. I expressed that I believed the Neurologist would agree with me that TMS devices are very powerful device, discharging a massive magnetic field that after several sessions is capable of rewiring the brain. Given this fact, don’t we want to be sure that we are rewiring the correct network, and rewiring it in a way that we are sure will lead to functional benefits? An additional thing to consider is brain development. Depending on the child’s age and brain development thus far, the brain’s response to this intervention may be different. In the case of a drug, we would insist that the drug be properly tested in children with a similar condition for dosage, side-effects, chemical composition, etc. So, why wouldn’t we do the same for a neurostimulation device? As a mother myself, I would want to know that the treatment that was being applied to my child had been studied both for safety and efficacy in children and that there was a known percentage chance that it would help and a known percentage chance of all possible side-effects.
The truth is that anything powerful enough to change the functioning of the brain is bound to come with the potential for side-effect. I just personally would want to know what those are and not only in terms of immediate effects, but also in terms of the long-term effects of “re-wiring the brain” and potential risks for other conditions later in life. The truth is, when it comes to the use of TMS in autism, we simply don’t have the answers yet. Thus, I maintain my position that TMS should not be broadly applied to children with autism outside of strictly regulated clinical trials and when TMS is applied in an off-label (Non-FDA approved) way, then it is the doctor’s responsibility to fully disclose the uncertainty of both the benefits and potential side-effects.
In conclusion, I would hope that parents don’t get all of their medical advice from day time television. In general if something seems too good to be true, it often is. Unfortunately, as much faith as I have in TMS and as much work that is being done to test new treatments for autism, we have yet to identify a “cure”. If you are interested in participating in TMS clinical trials, please look at the website, clinicaltrials.gov, where you may find researchers looking into the use of TMS for your or your child’s condition.