Portia Iversen is, arguably, the person responsible for Soma Mukhopadhyay’s viral success with Rapid Prompting Method (RPM). To Iversen, who first saw RPM being promoted in a story aired by the BBC, finding Mukhopadhyay and her son, Tito—and bringing them to the United States--was a matter of “life and death.” Mukhopadhyay and her miraculous communication technique, it seemed, was the key to curing her son, Dov, of autism.

Iversen documented her experiences in a 2006 book called Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism.

In this second review of the book, I discuss the strange science contained within it.

Iverson’s interest in RPM started after her son, Dov, was born with autism. She, erroneously, blamed its onset on a vaccination. This is the first of many pseudoscientific claims she makes about the neurological disorder. Coincidentally, autism is often diagnosed around the same time as infants and toddlers receive their vaccinations. (See Vaccines and Autism)

Understandably, Iversen struggled to accept his diagnosis. It was, she believed, a “black hex” irreversibly linked to a tragic world. At first, she could not even say he was autistic, telling people Dov had “pervasive developmental disorder.”

No one can blame her for that. Autism can be debilitating, as it was for her son. And, while autism was not considered a “spectrum” in 1995, Dov was on the severe end of the scale. He was non-verbal, had developmental delays, and displayed the aggressive and impulsive behaviors typical of individuals with profound autism.

Despite Iversen’s efforts to provide him with support (as she reports, to near emotional and financial ruin), none of the “traditional” professionals (e.g., doctors, psychologists, speech/language pathologists) or alternative practitioners (e.g., chiropractors, naturopaths) could give her the results she dreamed of, which was to cure her son.

Iversen started researching the topic, claiming that, in 1995, “almost no research had been done on autism at all.”

This is quite a bold statement, given that, in a very quick search, I found “autism” mentioned in a 1912 article called “The Theory of Schizophrenic Negativism” by E. Bleuler. Surely, in the 80+ intervening years, someone else besides Iversen had studied the topic.

Stephen Hawking at a press conference at the National Library of France independently using Augmentative and Alternative Communication (AAC) in 2006. His motor skills were significantly affected and, yet, he was able to use the technology independently and without a facilitator to provide visual, auditory, or physical cues. (Photo from Wikimedia Commons and is in the public domain).

At various times, Iversen, too, seems to take credit for being the first to suggest that non-speaking individuals use voice technology (Touch ‘N Speak technology was in use by 1985), inventing the cross-modal Stroop test (first published in 1935) and hypothesizing the following about learning styles and motor problems in autism (none of which have reliably controlled evidence to back up the claims):

Personalities are guided by activity in either the left or the right brain
Autistic people are either visual learners or they are auditory learners (e.g., they cannot see or hear at the same time)
Autism is, primarily, a motor planning problem

It seems Iversen had a myopic view of autism research, shaped, perhaps by the fact that Dov had not responded to intense speech/language therapy.

Nor had Applied Behavior Analysis (ABA) been as successful as she’d hoped. She’d had high expectations for the method, writing “We’d read that this kind of behavior modification program, if applied forty hours per week, could sometimes even return children to mainstream schools, eventually training them right out of their diagnostic category.” (p. 26)

Dov worked directly with Ivar Lovaas and his students at UCLA using positive reinforcements from ten to thirty hours a week for the next several years. However, as Iversen reports, Dov was not one of the “responders” and not part of the 47% that she says Lovaas claimed “recover” from autism.

Iversen was a self-described “stubborn, willful, and rampant dreamer” and by the time she began researching autism full time, she was, it appears, not interested in listening to experts who told her things she did not want to hear—including that RPM was “an elaborate smoke and mirrors.”

With RPM as the golden ticket, Iversen’s vision of curing autism included erasing the very characteristics that make autism “autism.” I included this quote in a prior blog post, but it bears repeating here because it seems to be a foundational tenet of the current neurodiversity movement. She writes:

If Tito was not retarded, if he had language and could communicate, if he had emotions and even empathy—then what was autism? What remained was a constellation of out-of-controlled behaviors, some repetitive, some impulsive, some obsessive. And the inability to generate voluntary behavior. The good news, I supposed, was that if you could eliminate retardation, language deficits, and lack of emotion from the equation, then, theoretically at least, autism ought to be a lot easier to figure out than we’d previously imagined. (p. 111)

Iversen knew FC was debunked. She criticized her husband’s attempts to use FC with their son, Dov. But she never doubted Tito and Mukhopadhyay, even when, firsthand, Iversen saw them fail a blind test.

Instead, in an elaborate display of mental gymnastics, Iversen developed her own hypotheses about language development in severely impaired individuals with autism and how RPM “worked” to bypass these issues (none of which hold up under scientifically rigorous scrutiny):

Literacy skills (e.g., the ability to recognize and decode the symbols of written language) are learned before the acquisition of language.
Language and literacy skills are absorbed by exposure to them in the environment and do not have to be taught.
“Independent” communication only occurs when the client being subjected to FC is given physical, auditory, and visual cues and responds only to information the facilitator already knows. Individuals with autism cannot answer questions about personal experiences and all other behaviors (including verbal and non-verbal communication) should be ignored.
Individuals can read and write without eye tracking ability.
Individuals being subjected to RPM using a one-finger, hunt-and-peck method do not have to look at the letter board to instinctually know where the letters are in space.
An individual whose everyday training includes “teach then test” activities (e.g., listening to a paragraph, then answering questions about it) could not respond to the exact same activity under blinded conditions where the facilitator does not know the answers ahead of time.
Either autism or the individual being subjected to FC is to blame when facilitated messages contain inconsistent or incorrect information (e.g., the person can answer “facts” but not personal information, the person is deliberately messing up the answers).
Intelligence equals literacy, literacy equals intelligence.

As deeply troubling as the spread of pseudoscience is, I find it equally disturbing to read Iversen’s descriptions of her son and other people with profound autism. From her perspective, these individuals are “dead,” “gone” and “difficult to relate to.” And though I think I know what she meant, I find it sad that she only seemed excited about interacting with Dov after his miraculous RPM “breakthrough.”

She wrote:

“Slowly he was beginning to join the culture of humans, perhaps simply because now he could.” (p. 315)

In the most generous light I can muster, I think Iversen was, at best, conflicted. I suspect, deep down, she probably knew that RPM was (and is) indeed, smoke and mirrors. Perhaps, under difficult circumstances, she found comfort in FC as a coping strategy, even if it was just an illusion. It seems to me, however, that RPM prevented her from moving past the grief of having a child with profound autism and accepting her son not for who she dreamed he would be but for the human being he was.

Having said that, I also believe that Mukhopadhyay found a gold mine in Iversen, at least for a couple of crucial years. All Mukhopadhyay had to do was sit back, act mysterious, evasive, and pouty—especially when anyone (including Iversen) came near enough to scrutinize her facilitating abilities. Iversen writes:

But it quickly became apparent that although Soma was a genius at what she did, she could not describe what she was doing or why it was working. And among the many things she tried with Tito over the years she wasn’t always exactly sure which ones had really contributed to her success with him. (p. 324)

Personally, I think Mukhopadhyay’s purposeful refusal to participate in blind testing indicates she probably had a very good idea of what contributed to her “success,” but fortunately for Mukhopadhyay, Iversen seemed, at the time, more credulous than almost all of the expert scientists, educators and researchers they interacted with throughout the book. When Iversen got too close to the truth, Mukhopadhyay broke off relations and, literally, put distance between them.

It seems quite probable that without Iversen’s willingness to rationalize away disconfirming evidence and conduct “research” that only produced the answers she wanted to hear, RPM would not have gained a popular following. Regardless, Mukhopadhyay benefited from Iversen’s financial support, marketing prowess, and nearly unquestionable loyalty to the idea that RPM was a key to curing autism.

To date, proponents continue to evade reliably controlled testing and RPM has no scientifically rigorous evidence to back up claims of independent communication.

Reference

Coons, Phyllis (March 31, 1985). "Handicapped students learn to talk with computers; BC campus school pioneers in teaching high-tech communication". Boston Globe. No. Third Edition. Boston, MA. p. B98.

Strange Science in Iversen’s book “Strange Son”

Facilitated Communication: a thoroughly discredited yet persistent technique

Strange Science in Iversen’s book “Strange Son”

Is there really nothing inherently atypical about language development in autism?

Autism, figurative language, empathy, and “autistic culture”

Facilitated Communication: a thoroughly discredited yet persistent technique