A Passion To Believe

Autism And The Facilitated Communication Phenomenon

Diane Twachtman-Cullen

• Publisher: Routledge
• Year: 2019
• Print ISBN: 9780367015114
• eBook ISBN: 9780429723926
• Edition: 1
• Topic: Psicologia
• Subtopic: Storia e teoria della psicologia

This book lays the foundation for the qualitative investigation into facilitated communication (FC). It addresses the contextual world of FC, and examines some of FC's most controversial issues. It takes a penetrating look at the FC culture and the forces that shape it.

Part One
The Prologue: Setting the Stage

Few treatment techniques have had as meteoric or as turbulent a ride to the fore of the disability field as facilitated communication (FC). This is particularly true with respect to its application to individuals with autism. From real-life dramas in the courtroom to emotionally charged docudramas on television, facilitated communication has been brutalized, idealized, and sensationalized as perhaps the most important (infamous?) treatment breakthrough of our times for people who are nonverbal. In some cases it has changed lives for the better. In other cases it has torn lives apart. For some families it has brought hope. For others it has delivered despair. FC has brought instant celebrity to some professionals while discrediting the work of others. And most astounding, facilitated communication has engendered all of this turmoil with no clear-cut proof of its validity and in the face of study after study questioning its validity. Just what is it about this technique that has the power to inspire some and disillusion others? Before we delve into the hows and whys of facilitated communication, it is important to determine what FC is and the context in which it made its debut both in the United States and in its country of origin.

The technique known as facilitated communication was developed by Rosemary Crossley in Australia. FC typically employs a manual or electronic letter display by which the nonverbal, or expressively limited, person spells out messages, often after being presented with the initial stimuli of objects and pictures (Biklen et al. 1991). In the initial stages of FC a person known as the facilitator provides hand-over-hand support to the client, ostensibly to facilitate message generation. According to proponents, this support enables the client to isolate his or her index finger for letter selection, helps to slow down the pace of the activity, and provides a level of comfort (i.e., trust) that allows the client to execute the movement patterns involved in the selection of specific letters (Kliewer and Currin 1992). Although decreasing the amount of physical support over time is advocated, claims of successful, independent communication by individuals have nonetheless been reported even when the level of manual support has been intense (e.g., hand-over-hand) (Biklen 1990; Biklen et al. 1992; Biklen and Schubert 1991; Crossley and Remington-Gurney 1992).

The technique has been used most widely in the United States with individuals who have autism, but its application with a thirteen-year-old girl with athetoid cerebral palsy in Melbourne, Australia, inaugurated the FC movement. The year was 1979. The child was Annie MacDonald, institutionalized since age three in what may be characterized as a warehouse for the intellectually disabled, so appalling were the conditions. The facilitator was Rosemary Crossley, architect of this new technique. The result—unprecedented at the time—would years later become a commonplace occurrence with facilitated communication. Basically, in a style and time frame that renders Annie Sullivan’s work with Helen Keller anemic by comparison, Rosemary Crossley, through the medium of facilitated communication, was able to demonstrate a level of literacy and academic proficiency in the environmentally and educationally deprived Annie that quite literally boggles the mind.

Perhaps it is this very aspect of FC—its ability to astound its audience—that causes the polarization of opinions that inevitably accompanies it. With such spectacular results, it is difficult to remain neutral on the subject. One is either dazzled or dubious. FC is either a breakthrough, even a miracle, or inexplicable, perhaps a hoax. Whatever the case, in addition to the polarization and controversy, the other accoutrements of FC were also present from the very beginning of Crossley’s inaugural work with Annie MacDonald: the allegedly normal mind trapped in a body that didn’t work; the disdain with respect to testing for competence; and the close ties to the deinstitutionalization movement, which was fast becoming the cause célèbre of disability advocates everywhere. Forebodingly, one other feature of facilitated communication was also present from the beginning: the signature allegation, rendered through the medium of FC, of mistreatment at the hands of the caregiver. In Annie’s case, the charge was that one of her nurses had tried to kill her by placing a pillow over her mouth. With that charge came another emblem of the FC movement—the ensuing courtroom drama. Thus from its earliest beginnings, facilitated communication was a force—albeit a controversial one—to be reckoned with in the disability community.

Despite publication of the book Annie’s Coming Out, in which Crossley and MacDonald chronicle their experience, and a movie by the same name, it was not until the early 1990s that Americans discovered facilitated communication. Both the technique and its specific application to those with autism were introduced to the United States by Douglas Biklen (1990) in a widely read qualitative report published in the Harvard Educational Review. Since that time, application of the methodology in the United States to individuals with autism has spread at an unprecedentedly rapid rate, fueled by very extensive coverage in the national print and television news media. That facilitated communication had the capacity to capture the attention, if not the imagination, of the general public should have come as no surprise. After all, FC has all the qualities of which good copy is made: human interest, triumph over adversity, and the proverbial Hollywood ending. The latter may be summed up in one word—vindication. For those with disabilities this vindication took the form of recognition of their competence and respect for their rights after the years of being misjudged. For their families and advocates it meant recognition of their efforts to raise the public consciousness to the plight and the personhood of the disabled. What was overlooked was that questions of scientific validity of a technique had somehow become enmeshed with sociopolitical issues concerning the rights of the disabled. Notwithstanding, once piqued, the public’s interest in facilitated communication spread with surprising rapidity throughout the country.

Two key ingredients may have interacted to create the bandwagon appeal of FC in the United States. The first is the persona of Douglas Biklen, who is widely respected in the field of special education as a tireless advocate for those with disabilities. His stature undoubtedly lent an air of immediate credibility to observations that might have been viewed with greater skepticism if rendered by a lesser spokesperson. Likewise, his preeminence in the area of qualitative research may have weighted the review of his findings in his favor in much the same fashion that championship matches are weighted in favor of defending titleholders.

The second factor that may have fueled the interest (and the eventual controversy) in facilitated communication in the United States is its specific application to autism, since in the words of one professional, FC “violate[s] conventional knowledge about [autism’s] severity, chronicity, and symptomatology” (Silliman 1992, p. 63). In reality, far more than conventional knowledge was at stake in the application of FC to those with autism. An entire body of scientific research into the nature and symptomatology of autism was dismissed as mere “traditional assumptions” by Biklen and his followers. Quite simply, one could not buy into FC for people with autism and still hold to the prevailing view of the disorder. Biklen’s answer was simple, albeit chilling. Acknowledging that his point of view regarding the nature of the autistic disorder contradicted much of the autism research literature, Biklen summarily called for a redefinition of autism (Biklen 1993). It should be noted, however, that Biklen’s view of autism—his knowledge base, as it were—was largely derived from what he observed through facilitated communication. The circularity of his argument went unchallenged, if not unrecognized, at least in the beginning. Thus the seeds of discontent were planted, soon to be fertilized by the hype and circumstances of the rapidly growing FC culture.

This book is divided into three parts. Part 1 lays the foundation for the qualitative investigation into facilitated communication. Chapter 1 addresses the context in which that study was undertaken by first providing background information with respect to relevant literature across several fields and then providing more specific information regarding the methods and procedures used in the study. Chapters 2 and 3 present portraits of the facilitators and clients, respectively.

Part 2 addresses the contextual world of facilitated communication. Chapters 4, 5, and 6 are each devoted to a different facilitator-client dyad. Chapter 7 focuses on important aspects of the facilitated messages themselves.

Part 3 examines some of FC’s most controversial issues. Chapter 8 addresses the numerous disparities that surround facilitated communication. Chapters 9 and 10 deal with the contentious issue of facilitator influence before summarizing the findings of this investigation. Finally, Chapter 11 takes a penetrating look at the FC culture and the forces that shape it.

1
Getting Down to Basics

We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time.

—T. S. Eliot

It is not possible to fully appreciate the implausibility of the union between facilitated communication and autism without knowing the essential elements that make up the autistic disorder. This is necessary because many of the claims made by facilitated communication (FC) proponents directly contradict what is known about autism. The unidimensional view of autism as essentially a movement disorder (Attwood 1993; Hill and Leary 1993) stands in stark contrast to research findings.

Unfortunately, teasing out the essential components of this complex, enigmatic disorder is easier said than done. Our understanding of the nature of autism has undergone a number of major paradigm shifts since Leo Kanner’s seminal work in the 1940s.

From Checkered Past to Coherent Present

For the most part, the early history of autism was shrouded in subjectivity and speculation. Despite Kanner’s initial biological perspective and his seminal 1943 paper describing autism as an affective disorder, the 1940s and 1950s were dominated by the psychodynamic/psychogenic view of autism, which held that autistic symptomatology was largely the result of emotional impoverishment caused by poor childrearing practices. This view not only gave birth to the concept of “refrigerator mothers” but was carried to its “logical” extreme in Bettelheim’s call for a “radical parentectomy” to “excise” the source of the problem (Bettelheim 1967). Although this theory of autism was based on pure conjecture without the slightest bit of empirical evidence to support it, it dominated the public’s view of autism and colored our thinking and treatment of individuals with this disorder for many years. Even today, vestiges of the psychodynamic theory and its guilt-provoking sequelae bear witness to the ravages of speculation and subjectivity.

The pioneering work of Bernard Rimland in the 1960s both ushered in the dismantling of the psychodynamic theory of autism and made a strong case for viewing it as a biological disorder (Rimland 1964). Since that time, research across several fields has not only supported the biological view of autism but has extended it to include the more expansive concept of it as a neurobiological/neurophysiological disorder (Arin, Bauman, and Kemper 1991; Courchesne 1991; Courchesne et al. 1988; Dawson and Lewy 1989; Fein et al. 1985, 1989).

The most dramatic statements regarding the nature of autism have come out of the National Institutes of Health (NIH). The July 1995 Preliminary Report of the Autism Working Group to the National Institutes of Health documents “clear evidence of functional and structural abnormalities in several brain regions in persons with autism” (p. 14). Relating those findings to specific behavioral manifestations, that report goes on to state,

Thus, within and across methods and centers, functional studies have been consistent in documenting deficits in late information processing and complex cognitive abilities and in association cortex and/or neurocortical systems. These results suggest that involvement is probably at the neural systems level of brain organization subserving adaptive behavior and function within society. Where a substantial body of data have been accrued in autism, there is now remarkable consistency across centers and methodologies, (italics added; pp. 14–15)

In many respects, in the fifty-four years since Kanner’s seminal work on autism, the field has come full circle. Medical research on autism has not only implicated specific brain structures and systems but has also begun to relate these abnormalities to the overt behavioral symptomatology that occurs in the disorder (NIH 1995). The significance of these findings cannot be overemphasized, for they make a strong case for viewing autism as a multifaceted disorder in which underlying brain dysfunction results in complex, interrelated symptomatology. This view is astonishingly at odds with the simplistic FC view of autism as neuromotor in nature.

Research findings from other fields have also contributed to our understanding of autism. These too have implications for the concept of facilitated communication, since many of the claims made by FC proponents run counter to the data across several different fields.

For example, advances in the study of infant behavior, particularly with respect to the domains of language and social development, not only have led to a resurgence of interest in what Kanner termed affective contact but have also paved the way for understanding autism as, essentially, a disorder of social relatedness (Dawson and Galpert 1986; Fein et al. 1986; Hobson 1989; Mundy and Sigman 1989; Sigman 1989).

According to Dawson (1989), “The core symptoms of autism (aberrations in social relationships, verbal and nonverbal communication, and symbolic thinking) have one important feature in common: These areas of functioning normally develop in the context of social interaction between a young infant and its caretaker” (p. xvi). Dawson goes on to speculate that there exists a “basic abnormality” within the social-affective domain that not only underlies the difficulty that individuals with autism have with symbolic activities such as language, verbal and nonverbal communication, and imagination/play but also exerts an impact upon cognitive development. Furthermore, it would be difficult to imagine that such deficits would not have implications for FC, since message generation is by definition a symbolic activity.

Ornitz (1985) approaches the social impairment issue from the point of view of sensation. He argues that the social deficits in autism are secondary to disturbances in sensory modulation (i.e., the ability to regulate incoming information from the senses). Hobson (1989) posits a social-affective theory of autism in which disturbances in what he terms personal relatedness underlie the deficits in cognitive and symbolic functioning. Other researchers focus on the mechanisms of arousal and attention to explain the core symptoms of autism. For example, Dawson and Lewy (1989) discuss the socio-emotional impairments found in the disorder within this context. They argue for the primacy of disturbances in arousal modulation (i.e., the ability to regulate states of alertness) as the mechanism that compromises the individual’s ability to both attend to and process social-affective information.

Courchesne (1991) presents compelling evidence linking the social deficits in autism to problems in the area of shifting attention. Drawing a connection between experimental evidence and clinical observation, he hypothesizes that due to damage at the level of the cerebellum, individuals with autism are unable to make the rapid and flexible shifts in attention required to understand and follow the temporally contiguous pattern of the social world. As a result, according to Courchesne, individuals with autism miss the subtle social cues that regulate sociocommunicative interactions and/or, because of problems in shifting attentional focus, experience them apart from their original contexts. He concludes that under such circumstances, understanding and sensemaking are severely compromised.

Mundy and colleagues (1986) lend support to Courchesne’s theory; at the same time they establish a connection between social behavior and the development of language and communication. They hypothesize that children with autism have difficulty with triadic attentional deployment, that is, with c...

Table of contents

• Cover
• Half Title
• Series Page
• Title
• Copyright
• Dedication
• Contents
• Foreword
• Preface
• Acknowledgments
• Part One The Prologue: Setting the Stage
• Part Two The Drama Unfolds
• Part Three Unsettling Reviews
• Epilogue: The Reviews Continue to Come In
• Appendix
• References
• About the Author
• Index