By Siegfried Othmer, PhD
In the August edition of Scientific American, professional skeptic Michael Schermer took on facilitated communication (FC) for autistic children, a tactic that had been thoroughly discredited in a Frontline piece on PBS back in 1993 entitled “Prisoners of Silence.” Sue Othmer and I had watched that episode at the time, and our reaction was very much the same as Michael Schermer’s. When FC was evaluated under controlled conditions, some facilitators were playing a larger role than they should have, and what appeared on the letter board was often the fulfillment of their own expectations rather than the wishes of the autistic child. In their zeal to demonstrate to the scientists just how useful FC could be, they had in fact achieved the very opposite.
This exposé was sufficient to set the entire professional class into a stampede away from facilitated communication, and from that moment on FC could no longer be a topic of polite discussion in professional settings. Since we work with autistic children, I had the opportunity to query parents who clearly had not been similarly dissuaded. They were still using letter boards with their children. What did they have to say for themselves?
One mother described a scene in which she had taken her autistic daughter to a shoe store to buy her shoes. Outside the store the girl started tantruming, and the mother could not figure out why. Out came the letter board. The girl typed out “boots.” She did not want shoes; she wanted boots. She had been spending a good part of her life leafing through her mother’s Elle magazines, and had taken a fancy to the boots on display there.
On another occasion, the girl typed out “I love you” to her mom, at her own initiative, and with misspellings that no adult would make. Clearly these attempts to communicate were authored by the child, not the facilitator. Mere observation like this is sufficient to neutralize all of the controlled research: facilitated communication is clearly useful and proper in suitable situations. Whereas the scandals that arose around FC were certainly real, it did not follow that FC should be discredited wholesale.
How is this to be explained? In the earlier day, well before modern tablets and laptops, letter boards required an observer to track what was being typed. A child who had difficulty sustaining attention, or a child with poor fine motor control, might well be aided in that process by the facilitator. And that laid the basis for the slippery slope in which facilitators might be engaged with too much zeal and assume a primary role in the process. Autistic children might express a love for their facilitator, or reveal a history of abuse. Shades of the McMartin school scandal.
In the modern day, however, we have screens on which the text appears, and facilitators are no longer much involved. Our own earliest appreciation of this was through the essays that Sue Rubin, an autistic child, had published in the Los Angeles Times. The sentiments were quite believably her own. When we later had a chance to meet Sue Rubin and her family, she was still not communicating conventionally.
Years later we were working with a bright 15-year-old autistic boy, and I got into an engaging e-mail exchange with him. I encountered a remarkable individual. Of course I assumed that our neurofeedback had worked its magic more quickly than usual, and was looking forward to his next visit to our office so that we could continue our interaction. Alas, when he came to the office he took no notice of me at all. Nothing had really changed at that level. And yet the e-mail exchange continued.
Recently an item appeared in the news in which an autistic adolescent was relying on his keyboard to communicate with family members and teachers. He was also a ballplayer, and at one point the family became aware that while their son was on the playing field he was communicating conventionally with his teammates. He was in fact capable of verbal expression, but simply preferred the keyboard whenever that was an option.
Most recently an autistic child was trying to express his amazement at what had just happened within the neurofeedback session. He had done ILF NF the year before, and was returning to experience the latest software. With speaking ability still limited, he announced via his letter board that he was “…not the Eric I know.” (The name has been changed.) What did he mean by that? He typed out: “Good to be calm.” He had achieved in that first session a level of calmness that he had not known before.
When we look back upon this past quarter-century of history with autism, we observe one instance after another of a professional disconnect from clinical realities. It has only been ten years since autism became more widely recognized as a medical issue at all. Until that time it was seen either as a behavioral issue laid at the door of flawed parenting or as a genetically based issue that was not medically accessible. As is too often the case, professionals are drawn to the safety of the herd. The alternative is professionally too costly. In consequence, the capacity of professionals to sustain themselves in intellectual fairy castles is staggering to behold.
The evidence on the ground is obvious. Most progress in the field of autism was motivated and promoted by parents—-and led by medical professionals who became involved by virtue of being the parents of autistic children. Schermer reflects the state of current medical thinking by railing against “failed autism treatments including gluten-free diets, antifungal interventions, chelation therapy, [and more].” Rubbish. All of these have been shown to be helpful to particular cohorts within the broad autistic spectrum. And with respect to all of these, the field of medicine is being dragged reluctantly into the future by persistent activist parents and their heroic, supportive docs.
Meanwhile the alarming increase in the incidence of autism over the last several decades is being down-played at every turn (and even called into question); the burgeoning evidence of vaccine injury is being actively suppressed; and the hazards of glyphosate and acetaminophen are being ignored. This all follows from the lack of recognition of the inherent heterogeneity of the autism phenomenon in the medical perspective.
The field of medicine has been discredited as an enforcer of standards of treatment—with respect to autism, Lyme disease, cancer, chronic pain, and mental illness, among others. In all of these, we see the nefarious hands of the pharmaceutical industry in play as the de facto enforcer of medical standards. The field of medicine serves as its cat’s paw to discredit alternative modalities that challenge the pharmaceutical monolith.
Perhaps the greatest blunder in the history of modern medicine has been the conceptual blindness to the profound capacities of our biological systems for self-recovery by endogenous mechanisms: the field of instrumentally-aided self-regulation, biofeedback and neurofeedback. What started out as a blunder has become a tactic, one that serves the hegemon. Self-regulation technologies are simply ignored at the level of policy, and remain un-reimbursed at the level of practice.
That suffices to insure their continuing irrelevance.
We need a new declaration of medical freedom, which in the present context really means freedom from the hegemony of Monsanto (now Bayer), Johnson&Johnson, Pfizer, etc, and their comrades in arms, the insurance industry. They have succeeded in bringing under their control the medical profession, the universities, the professional medical journals, the CDC, the NIH, the Department of Agriculture, the DEA, and Congress. Parents and citizens at large are their last remaining adversary. They are the only entity left that is not subject to top-down control. The war is being waged with a propaganda effort that has now drawn in even Michael Schermer.