by Alan Kurtz
Although Kenny has little speech he seems to be able to read some words. When he sees certain brand names such as "Honda," "McDonalds," and "Old Milwaukee" Kenny can sometimes say them aloud. Kenny was the subject of a recent study whose authors reported that his ability to "identify these words dropped precipitously when they were typed or written independently of the actual label or logo." (Weiss, Wagner, & Bauman 1996, p.221).
What can we conclude from this information about Kenny's reading ability? Is Kenny reading or is he just recognizing familiar labels? While most of us would conclude that Kenny identifies the label or logo but does not actually read words,
Weiss, Wagner, & Bauman (1996) demonstrate very dramatically that Kenny can read. With facilitation Kenny types detailed information about stories he has read. Kenny's typing also reflects comprehension and reasoning abilities that are inconsistent with his labels of severe mental retardation and autism.
If Kenny can read, why is he able to say the brand names aloud only when he sees the logo? If he really is reading these words why can he not say them when they are presented independently of their naturally occurring labels?
Motor problems or Movement Differences as an Explanation for Hidden Competence Among FC Users
Douglas Biklen (1990) struggled with similar questions when he first learned about FC in Australia. He sought to understand why people who apparently had some literacy skills had not demonstrated these skills without facilitation. Biklen ultimately attributed people's inability to demonstrate their literacy skills independently to problems with motor planning. Biklen felt that difficulties with speech and other forms of communication might be the result of problems with performance, or praxis, rather than cognition. The terms global apraxia or developmental dyspraxia were used to describe these difficulties with voluntary movement (Biklen, 1993).
Support for the notion that persons with autism and other developmental disabilities may have difficulty with motor planning can be found outside the FC literature. For instance, Roy, Elliot, Dewey & Square-Storer (1990) believe that impairments in the production of gestures and action sequences are common in persons with developmental disabilities. The type of errors that individuals make, especially perseverative errors in action sequences, are similar to errors seen in apraxic adults. Barry Prizant (1996), when discussing language issues for persons with autism, claims:
"There is increasing evidence that a lack of speech development, and limitations in gestural communication may be caused by factors other than, or n addition to impairments in social-cognitive abilities. For example, general motor or more specific motor speech impairments involving motor planning (limb, or oral/verbal apraxias) may be involved. More generalized motor planning problems may affect the acquisition or use of augmentative systems, due to the fact that accessing such systems typically requires the competence to plan and execute specific motor responses such as arm extension and formation of an index finger point for indicating (when using a communication board), or configuring hand and lower arms for initiating and executing particular movements used in sign language or natural communicative gestures. (p. 174)."
Prizant (1996) suggests that motor speech limitations may affect many individuals with autism. Among those limitations are difficulties with speech intelligibility "consistent with a diagnosis of developmental dyspraxia." Evidence for developmental dyspraxia includes difficulty with multisyllabic productions, decreasing intelligibility with longer utterances, and greater intelligibility with more automatic speech such as echolalia than with "volitional forms of spontaneous speech." (p. 174-175)
In an attempt to more adequately understand the theoretical implications of FC, several researchers explore movement disturbance or movement differences in persons with autism and other developmental disabilities (Leary and Hill, 1996; Hill and Leary, 1993; and Donnellan and Leary, 1995). These terms refer to the broad range of difficulties individuals with autism and developmental disabilities may experience in regulating movement. Difficulty in regulating movement can involve problems in initiating, executing, continuing, stopping, combining, and switching activities. Hill and Leary (1993) reviewed earlier, somewhat neglected research suggesting that motor difficulties are a key feature of autism and some other developmental disabilities. Damasio & Maurer (1978), for instance, described a whole range of neuromotor symptoms seen in persons with autism. They concluded "Disturbances of motility are an important aspect of the clinical picture of autism and constitute a clear indication of CNS [central nervous system] involvement." DeMyer et al. (1972) suggested that children with autism may have difficulty carrying out some skilled voluntary movements and that they might be experiencing a form of dyspraxia. Although few large sample research studies on the movement characteristics of persons with autism have been conducted, clinical evidence suggests that movement disturbances/differences and motor planning problems may be common among or characteristic of this population. (Leary & Hill, 1996; Prizant, 1996; Smith & Bryson, 1994).
Leary and Hill (1996) and Hill and Leary (1993) show that there is a significant overlap among the symptoms of persons with autism and other neuromotor conditions such as Parkinson's Disorder and Tourette's Syndrome. These symptoms are more complex than those associated with dyspraxia and can affect gait, facial movements, speech, posture, motor performance, muscle tone, and behavior. According to these researchers, a whole host of problems generally thought to be indicative of cognitive limitations or a lack of interest may instead result from difficulties in regulating movement.
Dr. Philip Teitlebaum and Dr. Ralph Maurer have reviewed videotapes of children with autism and find a great deal of evidence for the presence of movement problems. In a lecture comparing components of walking in children with autism, persons with Parkinson's, and normal children, Teitelbaum (1995) noted that the mode of walking in some children with autism reflects arrested motor development. Teitlebaum, in a November 1995 lecture at the annual meeting of the Autism National Committee, compared components of walking in children with autism, persons with Parkinson's and normal children (Amos, 1996). The mode of walking in some children with autism reflected arrested motor development. According to Teitlebaum, significant movement problems are apparent in videotape of one infant who was later diagnosed with autism. Teitelbaum now believes that it is possible to diagnose autism/PDD as early as a one year of age based on observed movement difficulties.
Dr. Stanley Greenspan, in a November 17, 1995 workshop in Conshohocken, Pennsylvania entitled, The challenging child: Meeting the emotional and developmental hurdles of children birth to three, states that children with autism/PDD fail to master some steps in a normal developmental sequence. (Amos, 1996) At about five months of age most children reach a stage Greenspan calls "attachment/relationship." At that stage "synchronous" motor movements between the child and others begin to occur. These synchronous patterns of movement form the foundation for later communicative engagement between the caregiver and the child. In children with autism/PDD the meaningful flow of movement between the child and the caregiver in the attachment/relationship stage seems to be absent. Maurer (1994) has also described difficulties persons with autism of all ages may have in synchronizing their movements and communication with others. These difficulties can make relationships difficult or impossible.
Critique of Movement Disturbance/Differences Hypothesis
Critics of facilitated communication have insisted that motor planning problems or movement disorders have not been shown to be core characteristics of autism. Others have observed that many persons with autism exhibit very good coordination. For example, Rimland (1992) argued: "Most parents indicate that their children are average or above in the use of their hands. The idea that autism is, or typically involves, a 'movement disorder' is ludicrous." 1
Jacobson, Mulick, & Schwartz (1996, p.759) agree with Hill and Leary (1993) that there are similarities between the motor topologies of persons with autism and those with specific movement disorders but regard them as superficial. They also point out there are higher rates of "selected components of dyspraxias" in persons with autism but that neurological research does not support the belief that this is a cardinal feature of the condition.
According to Green and Shane (1994) "apraxia" is not well operationalized and inferences about its presence should only be made when alternative explanations have been eliminated. Discerning whether apraxia is present in persons with autism and other developmental disabilities can be especially hard because of the difficulty in sorting out whether the observed problems with accomplishing a task are the result of motor planning problems or cognitive and language deficits.
Just as FC served as an impetus for some researchers to explore movement differences, criticism of this theory usually goes hand in hand with a criticism of FC. The belief that persons with autism and other developmental disabilities may have difficulty regulating and planning movement is seen as a rationalization for an unproven technique. Jacobson, Mulick, & Schwartz (1996) state: "The claim that developmental dyspraxia is a cardinal feature of autism or mental retardation is based only on the uncontrolled observations that these individuals demonstrate unexpected literacy or seem to require help doing most everything." (p. 760) If one believes, as these authors do, that no one is really communicating with FC, no discrepancy exists between cognition and performance, obviating the need for a motor disturbance theory to explain hidden competence. Similarly, Green and Shane (1994) dismiss the idea that motor problems may interfere with the ability of FC users to demonstrate their competence independently when they say: "The most plausible explanation for the observation that many such individuals do not spell without assistance is not that they are unable to point independently, but they do not know how to spell." (p. 164) These authors also argue that their explanation is more consistent with the prevailing view of autism which sees most persons with this condition as having cognitive and language deficits. The critique of a movement disturbance is based on several assumptions. These assumptions are addressed below.
Assumption 1 - FC has not been shown to be valid.
If FC users are not really communicating there is no discrepancy between performance with or without FC. Contrary to much of the early research, there is now substantial evidence that FC can work for some individuals previously thought to have severe cognitive impairments (Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996, Weiss, Wagner, & Wakeham, 1996, Vasquez, 1994, Intellectual Disabilities Review Panel, 1989). Previous testing shows that Kenny has a severe cognitive impairment, yet with FC he demonstrates communicative competence, intelligence, and reasoning abilities completely inconsistent with his label (Weiss, Wagner, & Bauman, 1996). The results challenge the belief that Kenny's disability is primarily one of severe deficits in cognition or language. An adequate theory of autism must explain Kenny and others with autism who have demonstrated that the difference between knowledge and performance is real. The prevailing view of autism cannot explain this difference.
Assumption 2 - There is no research supporting the belief that persons with autism and other developmental disabilities experience movement disturbance.
Jacobson, Mulick, & Schwartz (1996) point out there is little neurological evidence supporting the belief that motor planning problems are a cardinal feature of autism.2 There is a great deal of clinical evidence, however, suggesting that this may be the case (Smith and Bryson, 1994; Prizant, 1996; Leary & Hill, 1996; Damasio & Maurer, 1978, DeMyer et al., 1972). Unfortunately, as with most research in autism, there are no large scale studies or studies with representative samples.
In a study of 36 children with autism, Hughes (1996) found that young people with autism have difficulty with executing goal-directed motor acts including very simple motor acts. By using two control groups Hughes found motor planning difficulties in children with autism that could not be accounted for simply by their measured mental age. Motor planning difficulties observed in children with autism were greater than those of both typically developing children and children with moderate learning disabilities with the same mental age.
Clinical evidence strongly supports the belief that many persons with autism and other developmental disabilities experience motor planning problems and other problems with regulating movement. This belief is supported by a small number of quasi-experimental studies.
Assumption 3 - People fail to demonstrate their competence because they have intellectual deficits and not problems with motor planning.
This assumption is based on prevailing beliefs about the nature of developmental disabilities. It presumes that difficulties with both action and expression stem from cognitive deficits. An equally plausible alternative explanation is that movement difficulties affecting expression may disguise a person's actual knowledge.
Arguing that empirical evidence demonstrates that persons with autism usually have cognitive deficits is simply circular reasoning. It does not address the alternative explanation. Essentially critics claim: "We know that people who behave this way have mental retardation because they perform poorly on IQ tests and people who perform poorly on IQ tests are mentally retarded." In fact all we can say is that people perform poorly on measures of IQ. The reason for this poor performance is debatable.
This belief, that persons who perform poorly on intelligence test necessarily have an intellectual deficit, is based on the presumption that these tests are valid measures of actual knowledge or cognitive ability. This presumption is articulated by Jacobson, Mulick, & Schwartz (1995, p.757) when they state: "That there is a strong presumptive relationship, in general, between overt production and actual ability, is a cornerstone of psychological assessment methodology, statistics and psychometrics" [Italics added] The use of the phrase "in general" implies that there must be exceptions to this rule. Kenny is clearly an exception because psychological testing failed to detect his "actual ability." Anyone, in fact, who is produces valid communication with FC thus demonstrating unexpected competence, is an exception to this presumption! What then is the point?
Dyspraxia is not well defined or operationalized (Smith & Bryson, 1994; Green & Shane, 1994). Thus while it is difficult to argue that persons with autism and other developmental disabilities experience developmental dyspraxia or global apraxia it also difficult to say they do not. Regardless of the specific label applied, many persons with autism and other developmental disabilities clearly have difficulty with planning movements (Hughes, 1996, Smith & Bryson, 1994). The movement disturbances/differences affecting persons with autism and other developmental disabilities may be too complex and varied to squeeze into existing diagnostic categories. Emerging clinical and experimental evidence makes it increasingly difficult to simply dismiss this theory in favor of explanations that treat deficits in autism as exclusively cognitive or language based.
The Complexity of Motor Disturbance/Differences
Because of the interconnectedness of various systems it is very difficult to identify any particular deficit as primary. For example, many people feel that persons with autism have a fundamental deficit affecting their ability to interact with others. Most people with autism clearly have serious social/affective problems but language, motor, perceptual, and even cognitive differences may be contributing to those social deficits. For instance, if motor or perceptual problems prevent a person from synchronizing his/her movements with others at a very early age, s/he may miss out on important early socialization. The interconnectedness of systems is most obvious in the relationship between movement and perception. Neurologically and developmentally movement and perception are inseparable. Each goal directed movement requires the integration of perceived sensory information. In performing a movement we receive sensory information that allows us to regulate our movement and to continue a sequence of actions. As I type these words, I integrate tactile information from my fingers on the keys, proprioceptive information about the position of my body and hands in space, and visual information from the computer screen informing me about success of my actions. Without this sensory feedback or the ability to integrate it, continued typing would be impossible. If I interfere with some of the sensory inputs by wearing thick gloves and a blindfold, my ability to type would be severely impaired.
Motor development proceeds as a child explores and acts on his/her environment. The child learns to regulate his/her movements by acting and perceiving the consequences of those actions. According to Thelan (1995) children do not learn to move by first cognitively representing an action and then performing it. Instead they learn through the feedback they receive from their movement in trying to achieve a goal. Over time most children develop an incredibly large repetoire of complex behaviors. This behavioral repetoire is flexible, allowing most people to make small changes in their behavior so that they can adapt to a changing environment.
Movement/perceptual problems may interfere with the development of complex behavior. For instance, Royeen and Lane (1991, p. 109) report that information that a young child receives through the proprioceptive and tactile systems helps form the foundation for "social, emotional, and possibly academic achievement."
Tactile defensiveness can lead to a host of problems including difficulty maintaining intimate relationships, irregular emotional tone, distractibility, and perceptual-motor problems (Royeen and Lane, 1991; Ayers, 1969; Scardina, 1986).It is becoming increasingly obvious to many researchers that many persons with autism and other developmental disabilities experience motor planning problems and movement differences. These problems can affect a person's ability to both communicate and demonstrate their competence. It is also clear that these difficulties may contribute to problems with learning, the development of the language, and the development of social skills. We simply do not understand the exact nature of these complex relationships.
Returning to the original question: how can we explain Kenny's performance? Why can Kenny sometimes say words when he sees them as part of naturally occurring labels or logos, but not when printed separately from those labels? Why can Kenny type with facilitation words that he can neither say nor type independently? Kenny's experience and the experiences of others who have been successful with FC must challenge researchers to find new explanations for these complex differences.
References
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Ayers, A.J. (1969). Deficits in sensory integration in educationally handicapped children. Journal of Learning Disabilities, 2, 160-168.
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Biklen , D. (1993). Questions and answers about facilitated communication. Facilitated Communication Digest.
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Damasio, A.R., & Maurer, R.G. (1978). A neurological model for childhood autism. Archives of Neurology, 35, 777-786.
Donnellan, A.M. and Leary, M.R. (1995). Movement differences and diversity in autism/mental retardation: Appreciating and accommodating people with communication and behavioral challenges. Madison, WI: DRI Press.
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Maurer, R. (1994) Presentation at Rethinking Autism Conference, Valley Forge Hilton, King of Prussia, PA. April 23, 1994.
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Royeen, C.B. & Lane, S.J. (1991). Tactile processing and sensory defensiveness. In A.G. Fosher, E.A. Murray, and A.C. Bundy (Eds.) Sensory integration: Theory and practice. (pp.108-133). Philadelphia: F.A. Davis.
Scardina, V. (1986). A. Jean Ayres Lectureship. Sensory Integration Newsletter, 14(3), 2-10.
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