Treatments For Autism - Facilitated Communication

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Autism Speaks - Cure Autism Now (CAN)
Facilitated Communication
This technique assumes that by supporting a nonverbal child's arms and fingers so that he can type on a keyboard, the child will be able to type out his or her inner thoughts. Several scientific studies have shown that the typed messages actually reflect the thoughts of the person providing the support.

Commission on Quality of Care and Advocacy for Persons with Disabilities – New York State
Facilitated Communication

What Is Facilitated Communication?
One of the most well-known early encounters with facilitated communication was Rosemary Crossley's use of the technique in Australia during the 1970s (Crossley, 1992). It was Dr. Douglas Biklen of Syracuse University who brought facilitated communication to life in the United States in the 1980s and popularized its use with individuals with disabilities, most notably autism.

Over the years, the term "facilitated communication" has evolved, but it can be defined as "a method of facilitating expressive communication. . . by supporting the communicators hand, wrist, elbow, or shoulder, and providing backward resistance to assist the individual in selecting letters on a letter board, typewriter, computer using a word processing program, or a small, portable computer" (Smith & Belcher, 1993).

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.

Why The Controversy?
The issue that has become the center of the facilitated communication controversy relates to the extent to which the communication of a person receiving physical assistance is truly independent (Hudson, Melita, and Arnold, 1993). More simply, some have questioned, "Is the communication coming from the individual, or the facilitator"?

Although Biklen (1990) recognizes the potential of the facilitator to influence communications, he explicitly admonishes against questioning the individual's competence to communicate with much greater sophistication than ever thought. While he has recently modified his position, 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.

According to Smith and Belcher (1993), much excitement generated by facilitated communication revolves around the notion that the individual really does not have mental retardation, as revealed by his/her facilitated communication. 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.

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. Newspaper headlines such as "Unlocking the autistic mind: New technique offers avenues of expression for people who social has judged unreachable" reflect how much parents, professionals, etc., want to draw individuals with autism or profound mental retardation into the mainstream of society and hear the inner thoughts and ideas that they cannot express in any other way.

Individuals, like Sharisa Kochmeister, who now type independently and have gone from a label of severe mental retardation to demonstrating quite normal intelligence, tell us the following:

• ". . . I deserve to be heard. My name and image are used, why not my words? We need to fight bigotry with one loud unified voice.
• I have a voice now--they will not return me to prison. They would not do this to Helen Keller and survive unscathed. They will not do it to us either. It's our turn now.
• Thank you all for listening."

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."

Others are less optimistic about the potential benefits of facilitated communication. 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. (Levine, Shane, and Wharton, 1994; Mulick, Jacobsen, and Kobe, 1993)

According to some authors, it is this flurry of allegations that has prompted urgent questioning about this technique one viewed as a "shining breakthrough," and has also instigated the assessment and empirical verification of the communications produced with facilitation. 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).

In a precedent-setting decision in March, 1993, the Appellate Division of the Supreme Court of New York ruled that in order for the facilitated communication testimony to be admissible in court, procedure must be implemented to assess "whether the facilitator is accurate and reliable; whether the facilitated testimony is a literal word-for-word rendition of the witness's responses; whether the witness's autism constitutes such a mental impairment as to render her incompetent to testify; whether she can understand the meaning of an oath, etc." This requirement is resulting in formal testing of the validity of facilitated communication prior to its admissability in New York State courts.

Where Is The Evidence?
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.

Biklen's reports on his observations of the use of facilitated communication generally conclude that communications are valid. One of his more well-known and cited qualitative studies entitled "Communication Unbound: Autism and Praxis" appeared in the Harvard Educational Review in August, 1990. This article became the first of many in United States' journals to give startling accounts of individuals with autism communicating at levels previously thought to be impossible.

Stories from facilitators relayed the joy, enthusiasm, and importance they felt as supportive people helping others develop the confidence they needed to be successful in overcoming their physical difficulties and impulsiveness to communicate through typing. In addition, individuals typed emotional messages describing their feelings of new found worth, intelligence, and power. They also recalled their past hurts and rejections, and described their relief at finally being free to express who they are and what they want.

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. Only recently have there been any consistent attempts to assess the validity of anecdotal reports through more rigorous empirical studies. Without exception, these empirical studies have questioned the authenticity of the communication as truly coming from the individual versus the facilitator. Some of the more well-known and cited studies include Cummins and Prior (1992) review of data from the 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.

Smith and Belcher (1993) also failed to find evidence of unanticipated literacy in adults with autism when efforts were made to inhibit facilitator influence. In another study, Szempruch and Jacobsen (1992) failed to uncover any accurate descriptions of pictured objects which were shown to the individual being facilitated, but not to 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.

How Is Facilitated Communication Being Used And Evaluated Today?
As an outgrowth of the controversy surrounding facilitated communication, the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) has issued an "Advisory to the Field" and a "Model Agency Guideline," including an informed consent statement (February, 1994) for the use of facilitated communication.

According to the OMRDD officials, neither the Advisory nor the Guideline is mandatory, rather they are intended to "furnish information and guidance to consumers, parents, professionals, and provider organizations about the status of facilitated communication as an intervention, the potential risk stemming from its use, and procedural safeguards. . . in order to ensure the prudent use of facilitated communication as a treatment intervention."

Basically, the OMRDD's Advisory indicates that program staff should "BE CAREFUL." A simplified summary of their Model Agency Guideline is that agencies should "Be SAFE" when using facilitated communication in their programs.

• Screen candidates and obtain consent.
• Assess individuals' baseline communication skills.
• Formalize program by an interdisciplinary treatment team.
• Educate and train staff, especially in validation and empirical verification of the communication.

Facilitated Communication Institute - Syracuse University
What is Facilitated Communication?

Facilitated communication training, FCT, (hereafter called facilitated communication or FC), is one form of augmentative and alternative communication (AAC) that has been an effective means of expression for some individuals with labels of autism and other developmental disabilities. It entails learning to communicate by typing on a keyboard or pointing at letters, images, or other symbols to represent messages. Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing (i.e., unassisted typing).

The person who provides support is called a facilitator. A facilitator can be a teacher or other professional, a family member or a friend. This support is highly individualized, based on specific needs. Thus it does not look the same from person to person.

• Child receives support at the hand with strong backward pressure after each key stroke.
• Child types with a light touch on the shoulder.
• Child types with one hand.
• Child works on developing a rhythm with two-handed typing.
• Child types slowly for a long period of time.
• Child types but tires quickly.

This diversity of supports and styles of typing complicates any understanding of facilitated communication as a prescribed method. Instead it is a dynamic and long-term process of identifying, implementing, and evaluating communication supports according to AAC guidelines.

The goal of facilitated communication is for individuals to achieve independent expression, often with a combination of typing and speech.

Facilitated Communication Institute - Syracuse University

Facts About Facilitated Communication

Facilitated Communication Should Never Involve Guiding A Person As He Or She Attempts To Point Or Type.
The idea is never to guide the person to a selection. In facilitation a parent, friend, teacher, speech language clinician or other communication partner provides physical and emotional support as the person with a communication disability tries to point in order to communicate. The method can involve pointing at pictures or letters. The physical support may include: assistance in isolating the index finger; stabilizing the arm to overcome tremor; backward resistance on the arm to slow the pace of pointing or to overcome impulsiveness; a touch of the forearm, elbow, or shoulder to help the person initiate typing; or pulling back on the arm or wrist to help the person not strike a target repetitively. Emotional support involves providing encouragement but not direction.

There Is Empirical Research To Support The Validity Of Facilitated Communication.
Controlled studies (e.g. Intellectual Disabilities Review Panel, 1989; Calculator & Singer, 1992; Vazquez, 1994; Weiss, Wagner & Bauman, in press), observational studies (Biklen, 1990 and 1993; Attwood & Remington Gurney, 1992; Biklen, Saha & Kliewer, 1995) and autobiographical accounts (e.g. Eastham, 1992; Oppenheim, 1974; Nolan, 1987; and Crossley & McDonald, 1980) provide evidence that the method works. One explanation why some researchers (e.g. Wheeler et al, 1993; Szempruch & Jacobson, 1993) have failed to replicate these positive results could be that their tests are not valid.

Before discounting the potential competence of individuals with disabilities, researchers have the obligation to question the competence of their research designs.

Facilitators Can Inadvertently Influence (I.E. Cuing, Leading) The Communication Of The Person To Whom They Are Giving Support.
Influence definitely can occur (see, for example, Biklen, 1990; Biklen, 1992; Biklen 1993; and Intellectual Disability Review Panel [IDRP], 1989). The IDRP study (1989) demonstrated that an individual who was able to type uninfluenced communication could also be susceptible to influence. Hence it is important for facilitators to monitor themselves and work to minimize influence (Schubert & Biklen, 1993). But, the fact that a person may be subject to facilitator influence does not automatically indicate that the person is not capable of uninfluenced communication!

It Is Not Necessary For Facilitators To Believe In The Competence And The Ability Of The Person With A Disability In Order To Make Facilitated Communication Work.
There is no need to prejudge a person's ability until it has been demonstrated. Indeed, many people who have expressed extreme skepticism about the method have subsequently been successful with it (Schneiderman in 1993). Nevertheless, we have noted that as with any instructional situation, it is important for the facilitator/teacher to express confidence in the individual's ability to succeed with the method, much as a coach expresses confidence in a person's ability to learn a new sport or as a teacher exudes optimism that a young student can learn to read or do math problems.

Facilitated Communication Can Be Tested.
When introducing a person to facilitation for the first time, it is valuable not to be testing the individual, allowing a the person time to build his or her confidence with the new means of communicating. This does not mean that it is not possible to test facilitated communication. Clearly, for the method to gain wide acceptance, it must be examined rigorously through many kinds of tests and research. It is gratifying that despite the potential problem that research tests could intrude upon and upset the communication process, researchers are achieving success in controlled studies (IDRP, 1989; Vazquez, 1994; Simon, Toll & Whitehair, 1994; Calculator & Singer, 1992), and in observational ones (Attwood & Remington-Gurney, 1992). While our own research is comprised mainly of long term observational studies (Biklen et al, 1992; Biklen & Schubert, 1991), some researchers at the Facilitated Communication Institute are now beginning to design controlled experiments as well.

Facilitated Communication Is Not A New Method.
Facilitated communication is known to have been used at least three decades ago (see Oppenheim, 1974) and was discovered independently in Sweden (see account in Schawlow & Schawlow, 1985), Canada (Eastham, 1992), Denmark (Johnson, 1988), Australia (Crossley & McDonald, 1980), and the U.S. (Oppenheim, 1974; Schawlow & Schawlow, 1985; L. v. Board of Education, 1990; Berger, 1992). Only recently has the method spread widely; this has occasioned active debate about the method.

Some People Using Facilitated Communication Have Made Allegations Of Sexual Abuse. Some Have Been Substantiated.
Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash et al, 1994). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

It Is Possible To Explore Whether Allegations Of Abuse Made Through Facilitation Are The Words Of The Person With The Disability Or The Product Of Facilitator Influence.
In an investigation, a second facilitator could be brought in to provide facilitation. If the person repeats his or her allegation with the same or similar details, this would indicate that the allegation originates with the person who uses facilitation to communicate.

Some Courts Are Now Accepting Testimony Given Through Facilitated Communication.
Testimony was given in an abuse case in Wichita Kansas; a jury found the accused guilty (Randall in Wichita Eagle, March 30 and 31, 1993). Also, the Supreme Court Appellate Division in New York state ruled that testimony given by such alternative means must be evaluated in each individual case (In the Matter of Luz P., Opinion & Order, January 14, 1993; Martin, 1993); to prove her competence to be a witness in her own case, Luz P. took and passed tests verifying her ability to communicate her own thoughts through facilitation (see Martin, "Facilitation theory tested", The Times Herald Record, July 31, 1993.)

Facilitated Communication Requires Trained Facilitators.
It is important for potential facilitators to learn about the particular physical problems the method is intended to address; it is useful for new facilitators to practice technique, to learn how to monitor the person's eyes on the target, to teach finger isolation, pacing and other skills associated with working toward independent typing, to formulate getting-started activities and to work on fading physical support. Facilitators must also learn how to foster control by the person with the communication impairment over his or her typing, and to avoid facilitator influence, whether physical influence or verbal influence (e.g. completing sentences for the person, anticipating next letters and words).

Parents And Friends Can Learn To Be Good Facilitators.
Some teachers and some parents seem to pick up the method quickly; for others it takes longer to learn. But many parents and teachers for whom it was initially difficult have been able to learn the method and to achieve confidence in their ability with it.

In Order To Communicate Through Typing, The Person Must Know How To Read.
People do need to know how to read in order to be able to type out words. Interestingly, many people now using facilitated communication have already learned how to read but have had no means of showing that ability until they could type. Not surprisingly, individuals who use facilitated communication reveal varying literacy skills. If individuals cannot read, they can be introduced to facilitation in which they point to pictures. The manner of teaching them reading would be the same as for people who can speak.

Facilitated Communication Can Be Used In Combination With Other Forms Of Expression.
People who use facilitated communication may also continue to work on developing their speech; some people can say the words or letters they are about to type and some can speak a sentence that they have typed, even though they may be unable to carry on an open ended conversation. Others may continue to develop proficiency with manual communication. And certainly, using facilitated communication does not preclude learning other skills, such as independent living or employment related skills.

We Cannot Say With What Percentage Of People Facilitated Communication Will Work.
The method may be useful for any individuals who cannot speak or whose speech is highly echoed or in other ways limited and who cannot point independently *and* reliably. But we have not selected a random group of people classified as autistic or developmentally disabled and tried the method with them, so we cannot say with what percentage it might work. Based on our experience, however, we believe that the method will be found to be useful for most people who have difficulties with speech and who cannot point reliably.

Facilitated Communication Does Not Work Equally Well With Everyone.
As with any method, it may not be effective with some persons and will predictably have varying success with others. Success may be related to neurological factors (e.g. tremor, low and high muscle tone, lack of proprioceptive awareness) and to socio-emotional factors such as amount and nature of support, educational experience, and opportunities to practice.

Not Everyone Using Facilitation Can Type Fluent Conversational Communication.
People vary in their communicative skills. Not surprisingly, individuals who share the same facilitator(s) demonstrate different levels of fluency as well as personal concerns or themes, distinctive phraseology or expressions, and other stylistic differences.

If A Person Types Fluently With One Or Two People, Initially He Or She May Still Have Difficulty Typing With Others.
Since confidence plays a big part in a person's success, changing facilitators may involve a period of adjustment and building or rebuilding of confidence.

Facilitated Communication Is Not A Cure For Autism Or Other Developmental Disabilities.
It is a means of communicating, not a cure.

People Who Use Facilitation To Communicate May Not Always Need A Facilitator. The Goal Is Independence.
Already some individuals in the U.S. and many more in Australia have demonstrated that they can learn to type independently. Because independent typing is a realizable goal, Rosemary Crossley has referred to the method as "Facilitated communication training."

The Fact That Some People Using Facilitated Communication Can Write Poetry And Demonstrate High Level Thinking Abilities Does Not Necessarily Mean That They Can Control All Of Their Behavior.
The same neurological problems that make reliable independent pointing and speaking difficult may also affect other behavior, for example toileting. The fact that a person can type letters and thus communicate does not logically mean that all other difficulties would be eradicated, particularly if these involve stereotypies or obsessive compulsive behavior. At the same time, some people improve in these areas as their expressive communication developed.

The Fact That A Person Can Point Effectively Sometimes Does Not Guarantee That He Or She Can Do It All Of The Time, On Demand.
The issue is not whether a person can point, but whether he or she can do so reliably, that is on demand, for multiple step tasks as well as one-step ones. It is well known that there are neurological reasons other than intellect to explain why multiple step tasks might be difficult for people with developmental disabilities (see Kelso & Tuller, 1981; Miller, 1985; Maurer, 1992). Recent studies in the field of autism (e.g. Courchesne, 1993; Bauman in ASA, 1993) as well as in spina bifida, Down syndrome, Williams syndrome, Joubert syndrome, and hydrocephalus (see Leiner et al, 1991; Ziegler, 1990; and Bordarier & Aicardi, 1990) identify cerebellar abnormalities. It is known that the cerebellum plays an important role in regulating complex motor tasks. The idea of facilitation is to help individuals overcome particular difficulties with motor tasks. Over time, with practice and with improved confidence, individuals are expected to become able to type reliably, without a facilitator.

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