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Tero Toivanen

Facilitated Communication - 0 views

  • Facilitators who work closely with individuals with autism, as well as other developmental disabilities (e.g., mental retardation, cerebral palsy, etc.) report that individuals with little or no language are fully expressive about life experiences, thoughts, feelings, choices, preferences, and decisions, when allowed to communicate through facilitation.
  • Biklen and other proponents of facilitated communication have been strongly opposed to objective, empirical validity testing. They maintain that testing undermines the individual's confidence, places him or her under pressure, and introduces negativism that destroys the communicative exchange.
  • Rather, under the surface of autism is a person with full cognitive faculties. Smith and Belcher (1993) indicate that much of this suggests a basic unwillingness on the part of families, professionals, and caregivers to accept the individuals with disabilities for what they are, thus diminishing the value of the individual in a way that the disability itself could not have.
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  • Thompson (1993) describes facilitated communication as a classic example of the self-fulfilling prophecy. The facilitator wants to believe that the person with a severe cognitive and language disability is actually of normal to superior intellectual ability. Parents especially want to believe that a way has been found to finally unlock the door to their real son or daughter.
  • In short, people want facilitated communication to work.
  • Advocates of facilitated communication often respond to naysayers, "It can't hurt to try it." Biklen agrees, "It is not harmful to teach people to communicate through pointing." However, he qualifies his claim with the caveat that "it can be harmful if the facilitator over interprets, does not monitor the person's eyes, facilitates when the person is looking away, is not sensitive to the possibility of guiding the person, and asks leading rather than clarifying questions."
  • Some argue that "false communication" may distort beliefs, understanding, and rehabilitative approaches to persons with autism and other developmental disabilities.
  • Additionally, facilitated communication in the past few years has been the source of many contested abuse allegations, usually allegedly reported by an individual with very limited unassisted communication skills against a family caregiver or caregivers.
  • There are at least 50 legal cases in the U.S. involving allegations of sexual abuse produced through facilitated communication (Berger, 1994). Several such cases have already occurred in Australia, and some have arisen in Europe (Green, 1992).
  • With the exception of three empirical studies (Intellectual Disability Review Panel, 1989; Calculator and Singer, 1992; and Velazquez (in press)) which provide preliminary validation of facilitated communication, most of the support for the validity of facilitated communication is based on anecdotal reports.
  • Unfortunately, validity questions surround anecdotal reports of facilitated communication. In general, these reports lack the controls necessary to rule out experimenter biases, reliability concerns, and threats to validity (Cummins and Prior, 1992; Jacobsen, Eberlin, Mulick, Schwartz, Szempruch, and Wheeler, 1994).
  • Although Biklen (1990) admits that facilitator influence is a real possibility, facilitated communications are typically reported as though they are the words of the person with a disability.
  • Without exception, these empirical studies have questioned the authenticity of the communication as truly coming from the individual versus the facilitator.
  • Interdisciplinary Party Report (1988) and the Intellectual Disability Review Panel (1989) both of which examined the source of facilitated communications produced by persons in Australia, and found strong evidence that responses obtained through facilitation were influenced by the facilitator.
  • Gina Green, Director of Research for the New England Center for Autism and Associate Scientist for the E.K. Shriver Center for Mental Retardation, Inc., has reviewed over 150 cases where empirical testing was performed and cites 15 independent conduct evaluations involving 136 individuals with autism and/or mental retardatiion who were alleged to have been taught to communicate via facilitated communication. In none of the cases were investigators able to confirm facilitated communication by the 136 individuals.
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    Facilitated Communication by Natalie Russo [First Published in Quality of Care Newsletter, Issue62, January-February 1995]
Tero Toivanen

Autistic Aphorisms: Intelligence, Genius, and Autism - 0 views

  • Professor James Flynn has incorporated an interesting sidebar into his book What is Intelligence? In it he lists his seven choices for Western civilization’s greatest minds: Pythagoras, Plato, Aristotle, Archimedes, Newton, Gauss, and Einstein.
  • Hundreds of research teams, maybe even thousands by now, have so convinced themselves that intelligence must originate from inside our skulls, have so convinced themselves that only within networks of cranial neurons can be found the secrets to humanity’s growing mental capacity, that all have managed to overlook completely the far more plausible alternative—the one existing right before our very eyes.
  • It is time to reconsider that conventional wisdom, time to regard genius with a different set of eyes; for genius is not a function of greater intelligence, genius is the description of how intelligence grows.
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  • Look at the content of any intelligence test—language, arithmetic, patterns, designs. What we measure with the aid of those I.Q. booklets are not the abilities we inherited from out our animal past, but instead their exact counterpart; we measure only those skills the species has been adding throughout all its history since. In some sense, an intelligence test measures the modernness of an individual; an intelligence test measures an individual’s ability to appropriate for himself the same set of skills the species has been appropriating as a whole—skills that do not find their origin in our biological nature, but instead owe their existence to the strange, brewing mixture of non-biological pattern, structure and form that has been rapidly taking shape all around us.
  • The unusual characteristics of humanity’s transformational individuals are not the result of their genius, they are genius’s prerequisite
  • But counter to prevailing wisdom, there are many autistic individuals—most likely a majority—who do make substantial progress by means of an alternative perceptual course, a course that allows them not only to navigate meaningfully their surrounding world, but also to assimilate, if somewhat awkwardly and belatedly, to the human species itself (and thereby explaining how autism, estimated to be present in nearly one percent of the human population, could go entirely unrecognized until as recently as sixty-five years ago).
  • all autistic individuals must crystallize their existence by means of this alternative perceptual course—it becomes, in essence, autism’s most salient feature.
  • The unusual behaviors and interests of autistic children—lining up toys, staring at ceiling fans, twirling, flapping hands repeatedly, fascination with knobs, buttons, switches, letters, shapes and digits, watching the same video again and again, singing the same song over and over—these activities betray a form of perception completely unlike that of most other children, a perception noticeably absent in social and biological focus, but also noticeably drawn to symmetry, repetition and pattern.
  • The unusual routines of autistic children are the natural, indeed the expected, mode of expression for a form of perception engaged primarily by the structural aspects of the non-social, non-biological world.
  • Autistic individuals would have been the first to notice the inherent structure contained in the natural world—the geometry of plants, the isomorphisms of natural objects, the logic of the celestial seasons—only they would have had motivation to embrace such form, only they would have had the need to perceive nature’s symmetry, repetition and pattern in order to form their cognitive grounding.
  • We know only bits and pieces about the four Greeks on Professor Flynn’s list, but filling in with the traits from the list’s more modern members, we can reasonably summarize all the unifying characteristics: late- or strange-talking, socially awkward, irascible, obsessed with structure, compelled by form, unusually—not necessarily greatly—intelligent.
  • The continuing medicalization of autism, the insistent demonization of autism’s spontaneous effect—these carry the danger of an unforeseen consequence. For the cure of autism will not be the end of a tragic brain disorder; autism’s eradication will not see the passing of a troubling mental disease. The removal of autism from the entire human species will produce only an ironic solution to the mystery of our expanding human intelligence, it will produce the ignoble end to the Flynn effect.
  • When confronted by data that runs counter to our accustomed way of seeing things, we as humans have but two choices: we can try to explain the results away, or we can adjust our perception of the experienced world. The former choice paves the all-too-common road of modern academic science; the latter, as described above, walks the more promising path of genius.
  • Autism is not a mental illness, not a brain disorder, it is instead the source of humanity’s changing perception of its experienced world; it is, with care and understanding, genius’s fertile soil.
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    Autism is not a mental illness, not a brain disorder, it is instead the source of humanity's changing perception of its experienced world; it is, with care and understanding, genius's fertile soil.
Tero Toivanen

Research Unearths New Treatments for Autism - 2 views

  • The Utah researchers found that children receiving a combination of the two treatments (Lovaas-type training at school and TEACCH methods at home) showed three to four times greater progress on all outcome tests than did children who received only the school-based treatment. That study was reported in the Journal of Autism and Developmental Disorders (Vol. 28, No. 1, p. 2532).
  • Researchers in Washington, D.C., are comparing a discrete trial training approach with a "developmental, individual-difference, relationship based" (DIR) approach, says child psychiatrist Stanley Greenspan, MD, professor of psychiatry at George Washington University Medical School.
  • Psychologist Robert Koegel, PhD, at the University of California, Santa Barbara, and his colleagues are attempting to tailor a standard treatment to the specific needs of an autistic child and family. The standard treatment is called pivotal response training
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  • An initial retrospective study is comparing two groups of 20 children initially diagnosed with autism who were functioning well after two or more years of treatment, either with a discrete trial training approach or the DIR approach. The study aims to determine if treatment differences lead to subtle differences in outcome, for example, in terms of flexibility, emotional range, creativity and richness of the child's inner life. Investigators are planning to follow this research with a prospective, randomized, more rigorous study of the two approaches.
  • "In our previous studies we found out that it looks like you can't just deliver a standard treatment to autistic kids, that there's so much variability among the children that what works for one child doesn't work for another child," he says. "Our hypothesis is that...unless you individualize treatment, you're not going to get the best effect."
  • Researchers at the University of Maryland are testing an intervention to trigger children's "social engagement system," which includes behaviors such as listening, looking, facial expressions and vocalizations that support social interaction, says psychologist Stephen Porges, PhD. The treatment is designed to improve autistic children's ability to interact with others, thereby making them more receptive to traditional therapies.
  • The intervention is based on the theory that tensing the middle ear muscles enables people to pick out the human voice from lower frequency sounds in the environment, Porges says. Treatment involves exercising middle ear muscles by playing music that has been altered to include only frequencies associated with the human voice, which improves one's ability to listen to human voices. This, in turn, stimulates the entire social engagement system, Porges says. About 80 percent of 50 children with autism or other behavioral problems receiving this treatment via five 45-minute sessions in a double blind, randomized controlled study showed marked improvements in listening, language and other communication skills.
  • In a report last year in the Journal of Autism and Developmental Disorders (Vol. 28, No. 1, p. 15-23) evaluating an intensive home-based discrete trial training intervention, Stephen Sheinkopf, PhD, of the University of Miami and Bryna Siegel, PhD, of the University of California, San Francisco, noted that children receiving an average of only 21 hours per week of treatment showed gains in IQ comparable to those achieved by children receiving 32 hours per week. The intensity question remains an issue of importance for the autism community. "If we need 40 hours a week, fine," says psychologist Geraldine Dawson, PhD, of the University of Washington. "But if you only need 25, you have to realize that 40 hours is a tremendous burden not only financially, but on families and on the child."
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    Several treatments, and combinations of treatments, are under intense study.
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