Beyond Reasonable: a memoir of autism, adoption, and Facilitated Communication

Ralph Savarese’s memoir “Reasonable People” recounts a momentous project undertaken by two people who are manifestly much more than merely reasonable. In the course of the late 1990s, Savarese and his wife decided to adopt a profoundly autistic child, and they succeeded in educating him to the point of communicating in complex sentences, reflecting thoughtfully on his childhood and his autistic identity, composing poetry, and thriving in regular ed classes.

There’s just one issue. The boy composes these complex sentences, thoughtful reflections, poetry, and regular ed assignments through Facilitated Communication.

Savarese is aware of FC’s checkered history. So he trots out the usual pro-FC publications: Cardinal, Hanson & Wakeham (1996); Emerson, Grayson, & Griffiths (2001); Sheehan & Maturozzi (1996); and Vasquez (1994). These studies, however, have serious design flaws and have been outdone by more rigorous studies and systematic reviews–most recently Saloviita et al (2014); Hemsley et al (2018); and Schlosser et al (2019).

As far as his anecdotal experiences go, though, Savarese just knows that FC works. When he facilitates his son (who goes by DJ in the book and now, as in the eponymous 2017 film, by Deej), Savarese knows that the person directing the facilitated typing is not himself, but DJ. And, through the messages that he and his wife elicit from DJ through facilitated communication, Saverese also knows what’s keeping DJ from typing independently. The psychological baggage DJ bears from his early years in and out of foster care have led him to associate independence with abandonment. While he is able to physically distance himself from his parents and helpers and, say, go rollerskating with his birth sister, the prospect of typing messages without one of them sitting next to him and supporting his hand, elbow, or shirt cuff, apparently, elicits deep-seated memories of desertion.

Many accounts of purportedly successful FC fail to explain how the facilitated individuals acquired the language and literacy skills needed to type out sophisticated messages. To his credit, Savarese attempts to flesh this out. But his claims about DJ’s road to language and literacy fly in the face of what we know about language and literacy acquisition. Savarese claims that it’s only after DJ learns to read and spell that he’s able to understand spoken language. But where alphabetic writing systems are concerned, the causality flows in the opposite direction. Phonemic awareness of speech sounds is a generally a prerequisite for decoding written language, and comprehension of spoken words is generally a prerequisite for comprehending written language. True, many autistic kids are more attentive to printed words than to speech. And between six and ten percent of children with autism exhibit hyperlexia: a precocious ability to decode written words but without understanding their meanings. But it’s not the case that print-attentive, hyperlexic children (with or without autism) understand spoken language only after they’ve learn to read and spell.

According to Savarese, however, DJ learned to read, not through phonics, but through sight-word recognition–a methodology that, the research shows, doesn’t get you very far in practice. To see why, imagine what it takes to learn to read words in an unfamiliar alphabet through memorization rather than by sounding them out into familiar spoken words. Here are some Armenian flashcards:

Imagine what it would take to learn these strings of unfamiliar letter shapes without any knowledge of which speech sounds (phonemes) they represent or which (already familiar) spoken words they correspond to. Imagine what it would take to simply memorize these strings of shapes and the pictures that attempt to capture their meanings. 

Next, imagine how you could possibly apply these memorized pattern mappings to make sense of a spoken language of which you had no prior understanding. Here’s the best example of child-directed Armenian I was able to find on Youtube:

While Savarese describes a painstaking, step-by-step process towards literacy and spoken language comprehension, it is one that this Armenian Thought Experiment demonstrates is well nigh impossible–regardless of diagnosis.

Children, regardless of diagnosis, acquire neither their foundational vocabulary, nor their foundational understanding of spoken language, through the memorization of letter strings and associated pictures. That might be how AI “learns” language, but, as I and others have argued, AI doesn’t actually understand the language it processes. True understanding requires that we map language to the real world.

Young humans do this through what’s called “Joint Attention.” To learn an unfamiliar word, first the child attends to whoever is speaking (or signing or pointing out a written word). Then, often by following that person’s eye gaze or pointing gesture, the child switches their attention to whatever real-word object or event that person appears to be communicating about. (Most children do this constantly and automatically; autistic children often need to have their attention directed more explicitly.)

Frequency of Joint Attention, regardless of diagnosis, is correlated with vocabulary acquisition. And this particular correlation is causal: frequency of Joint Attention at 9 months predicts vocabulary size at 18 months. The causality applies to children in general; it applies to children with autism. In the case of autism, reduced Joint Attention is part and parcel of the reduced social connectedness that is autism’s core symptom. Indeed, reduced Joint Attention is correlated with autism severity. 

Taken together, the connections between between Joint Attention and language acquisition and between Joint Attention and autism severity explain why children with the most profound autism often remain not just non-speaking, but non-verbal: unable to express themselves (in independently authored messages) in any linguistic medium.

Like most proponents of FC, Savarese disputes the notion that reduced social connectedness is fundamental to autism–despite the fact that this has long been both the scientific consensus and the basis for the diagnostic criteria for autism used around the world. Instead, like most FC-proponents (most of them not experts in autism), Savarese advocates a redefinition autism as a movement disorder–one that interferes with the ability of autistic individuals to make their bodies do what they want them to do. Finally, like many FC proponents, Savarase claims that the work of reputable researchers–he cites neurologist Antonio Damasio–support this redefinition of autism. But all such work has done is support the general consensus that many individuals with autism have difficulty with certain aspects of motor control–like gait. We all know that motor control issues are widespread in autism, but it’s the difficulties with social communication that are universal. And, while there’s plenty of evidence for motor clumsiness in autism, there’s no evidence for the kind of mind-body disconnect that FC proponents depend on to justify FC.

Nor has anyone been able to explain how FCed individuals acquire the sophisticated academic and worldly knowledge that their FCed communications often display. How, in DJ’s case, had he as a fourth-grader acquired knowledge of the dynamics of social class in the Titanic and mastery over the algorithms of arithmetic? Even Savarase admits bafflement:

How to account for a neurologically disabled fourth-grader with both class and existential consciousness? How did DJ know these things? How, with almost no training in math, could he do complicated addition, subtraction, multiplication, and division problems in his head? How? How? How? Later, when I’d start investigating this phenomenon, I’d discover that nobody really had a theory beyond a notion of the child with autism somehow storing information (without exactly understanding it) and accessing it once he or she had come to communicative life.

(Savarese, p. 139)

Savarese proposes that teaching DJ how to read may have removed an emotional block that contributed to his autism, and that, once removed, opened up pathways to speedy academic progress.

Nowhere in Savarese’s account do we find any references to Clever Hans, to the Ideomotor Illusion, or to a much more plausible, empirically documented, explanation for what is going on here. And so we have no reason to dismiss the very real possibility that Savarese, his wife, and DJ’s other facilitators, unwitting victims of the Ideomotor Illusion, are the ones performing complex arithmetic, discussing the Titanic’s class dynamics, and composing the poems and the reflections about autism. And that the vulnerable person they’ve adopted is merely complying with their ever more subtle physical cues–the hand propping, the elbow pressure, the cuff-pinching–trapped inside a network of “reasonable people” who just know that they are doing what’s right for him.