Enhancing Non-Symbolic Communication “Loneliness is the only real disability.” -David Pitonyak Communication is… *the process of sharing information using a set of common rules (Northouse & Northouse, 1998) *dynamic, ongoing, always changing (Northouse & Northouse, 1998) *not something that has to be learned: it is “an inevitability, because humans cannot NOT communicate” (Hourcade et. al., 2004) *relational: requiring a partner *the exchange of thoughts, ideas, and feelings with others: “perhaps the single quality most central to humanness” (Hourcade et. al., 2004) Types of communication: receptive- receiving & decoding a message expressive- sending a message verbal- using words non-verbal- using gestures, facial expressions, body movements, etc. *Verbal communication is prized by American culture. Non-verbal communication, also known as "body language," is widely used by verbal communicators to convey emotion. It is highly influenced by culture, must be taken in context, and can be used conventionally (thumbs-up, pat on the back, smile) or to express more individualized information. For most people, non-verbal communication is just a supplement for speech. But for individuals who cannot speak, non-verbal communication becomes much more. Some non-verbal communications, such as certain facial expressions, seem to be universally linked with certain emotions: Sadness Anger Disgust Fear Interest Surprise Happiness …but many non-verbal cues are unique to the individual and are based on culture, experience, and context. symbolic- using recognizable symbols to communicate (written or spoken words, sign language, etc.) non-symbolic- using individualized methods of communication (facial expression, orientation, body movements, etc.) The Importance of Communication “We all share in common a desire for connectedness and autonomy as well as a longing to be heard and understood.” (Olney, 2001) People who are not supported in communicating their needs may experience learned helplessness. They may have given up communicating because their communicative behaviors do not bring about their expected outcomes, or their need to communicate may have been eliminated by over-eager supporters who do everything FOR them rather than WITH them. People who are not supported in communicating their needs may experience relationship fatigue. They have been disappointed by poor quality communication partners so many times in the past that eager communication partners may have to prove their intentions to respond to the person’s communicative behaviors. In addition, people who are frustrated by a lack of control of their surroundings may resort to using challenging behavior such as self-injury to communicate. People with disabilities benefit from being able to communicate by having the ability to express choices, build self-esteem, actively participate in home routines and activities, build shared experiences with others, and put partners at ease (Beukelman & Mirenda, 1992). Supporters also benefit from being trained in quality communication partnering. Nolan et. al. (2008) lists some of the many benefits of staff training: enhanced confidence in job responsibilities higher job satisfaction and morale better knowledge of best practices of human services improved problem solving skills reduction in stress and burnout better teamwork and understanding with co-workers and people supported The National Joint Committee for the Communication Needs of Persons with Severe Disabilities proposed a Communication Bill of Rights in 1992 which includes all of the basic communication rights of individuals with disabilities: Each person has the right to: request desired objects, actions, events and people refuse undesired objects, actions, or events express personal preferences and feelings be offered choices and alternatives reject offered choices request and receive another person's attention and interaction ask for and receive information about changes in routine and environment receive intervention to improve communication skills receive a response to any communication, whether or not the responder can fulfill the request be in environments that promote one's communication as a full partner with other people, including peers be spoken to with respect and courtesy be spoken to directly and not be spoken for or talked about in the third person while present have clear, meaningful and culturally and linguistically appropriate communications History of Communication Supports Augmentative and Alternative Communication In the past, Augmentative and Alternative Communication (AAC) was used to help people with disabilities communicate. From 1950-1970, individuals were screened for communication ability. People who could make sounds or had the cognitive ability to comprehend verbal language were treated with speech therapy. Only people who had been proven unable to speak were candidates for AAC. Speech therapy had a focus on grammar and syntax rather than functional speech until at least the late 1970s. In 1989 the Technology-Related Assistance for Individuals with Developmental Disabilities Act was passed, which required states to make assistive technology available to residents with DD. At that time, the Communication Needs Model was used, the goal of which was to reduce each individual’s unmet communication needs through AAC. Currently, the philosophy of AAC professionals is the Participation Model, which states that everyone CAN communicate, given the proper supports. AAC currently focuses on communication as a social behavior, helping people with disabilities sample a huge variety of communication tools (picture boards, keyboards, sign language, etc.) in order to find the one that suits their functional communication needs. Communication for People with Severe and Profound Disabilities Some people experience more difficulty communicating than others based on the severity and nature of their disability. However, even people with very severe disabilities do indeed communicate in a variety of ways. “Careful attention to communication reveals that behaviors that on the surface appear to be random, maladaptive, or challenging, are purposeful…” (Olney, 2001) Assumptions often made by professionals: 1. People who cannot speak are so impaired that they cannot know what they want. 2. Only verbal communication should be rewarded because it is more “appropriate” than other communicative behaviors. 3. Challenging behaviors should be targeted for change rather than interpretation. (Olney, 2001) 4. The person has not responded to communication opportunities in the past, so he never will. 5. If we are “taking care” of the person efficiently, he shouldn’t NEED to communicate. (Siegel-Causey &Guess, 1989) Encouraging Non-Symbolic Communication The most important thing a supporter can do to encourage the people he supports to use more non-symbolic communication is this: Recognize and respond to all communicative behaviors. “Typically, all that is needed for the [communication] partners to become successful in the exchange is an awareness that a certain behavior is a communication message.” (Johnson et. al., 1996) Identify PCAs: Potential Communicative Acts. This is how all humans learn to communicate intentionally. Most of us experience this process from birth! Example: A baby cries (a potential communicative act) and her father interprets her cry as, for instance, hunger. He responds to her crying behavior by providing her with food. The baby learns that crying gets her food, so the next time she’s hungry, she cries. Perhaps the cry did not mean “I’m hungry!” at first, but because the father interpreted it that way, the cry took on that meaning and became a useful communicative behavior. This is called the “as if” principle. If we act as if a behavior means something, over time it will take on that meaning. (Sigafoos, et. al., 2000) Once you have identified some PCAs, use “structured overinterpretation.” Structured overinterpretation simply means that you choose a possible function (for instance, when Mark stares at the front door I interpret that to mean he wants to go outside) and consistently respond to that PCA with the expected outcome. So EVERY TIME Mark stares at the front door, you take him outside. Eventually he will learn that when he wants to go outside, he should stare at the door. You have just helped him build a new communicative behavior and have expanded his ability to control his surroundings! (The key here is consistency. If you respond to Mark’s PCAs sometimes but ignore them other times, you will only contribute to his sense of helplessness and his frustration about his inability to control his surroundings.) What to look for: Siegel-Causey & Guess (1989) identified 14 categories of non-symbolic communications: generalized movements and changes in muscle tone relaxing, tensing vocalizations cooing, crying facial expressions smiling, grimacing orientation turning away or toward something pause ceasing movement to await instructions or to allow another person a turn touching, manipulating, or moving with another person holding hands, directing a person somewhere acting on objects/using objects to interact with others reaching for or touching an object assuming positions and going to places standing by sink to request drink, leaning back to be pushed on a swing conventional gestures waving to greet someone, nodding head depictive actions pantomiming, drawing pictures withdrawal pulling away or curling up aggressive or self-injurious behavior hitting, scratching, or biting self or others At KNI, the most commonly used non-symbolic behaviors, according to data gathered from the Communication Tables, are: vocalizations (screaming and yelling to indicate frustration or discomfort; laughing, singing, and humming to indicate happiness; etc.) generalized movements & changes in muscle tone (turning head to indicate rejection, stiffening muscles to indicate anxiety, rocking or swaying to indicate a variety of emotions, etc.) action on objects (reaching for a desired item, handing objects to others, etc.) assuming positions & going to places (standing near the door to indicate a desire to go out, slumping or putting head down to indicate fatigue, etc.) How to respond: All behaviors have one of eight functions: request item request permission request information request action comment on self comment on other reject/stop social Think about which of these things the person may be trying to communicate and respond contingently. At KNI, the most commonly used non-symbolic behaviors, according to data gathered from the Communication Tables, are: comment on self (expressing frustration/agitation, pain, happiness, boredom, sadness, fatigue, and fear) request item (asking for food/drink or other items of interest) reject/stop (indicating rejection of people, items, or events) request action (seeking attention or assistance) *Interestingly, there were no behaviors recorded at KNI that seemed to function as a "comment on other." The probable reason for this is that when communication is already so difficult, all communication efforts are directed toward expressing immediate needs. Qualities Required for a Communication Partner Believe that each person you support CAN and DOES communicate. Suspect all behaviors of having a communicative component. Use Collaboration: narrowing responses, eliciting yes/no answers, attending to environmental and situational clues, watching body language and facial expression, and interpreting spoken words. “Shared knowledge is built by spending time together.” (Olney, 2001) Practice Nurturance: give support, comfort, and affection; create positive settings for interaction; expand on behaviors initiated by the person; focus on the person’s interests (Beukelman & Mirenda, 1992) Respond within the person’s “cognitive repertoire”: if the person uses mostly gestures to communicate, you, too, should communicate with a lot of gestures. Too many supporters stick to verbal communication because that is what they do best, when the person might better understand non-verbal cues. Integrate communication opportunities into the normal flow of the person’s day. Motivate the person to communicate by requiring a choice or response rather than simply doing something for them. Help the person build communication skills that take the least amount of effort and are most effectively interpreted by supporters. Keep other supporters and family members informed when new communications are decoded. Use the person’s Communication Table. Encourage the person to be persistent. Transferring communication skills to new environments, acquiring new communication partners, and building new communication skills can be frustrating. The person needs to feel empowered to persevere when communication is difficult. Measure success in outcomes rather than number of behaviors translated. Is the person making more choices? Does the person have more control over his or her life? Does the person seem happier or more satisfied? Impediments to Successful Communication Partnerships Sometimes it is difficult to build a quality communication partnership with a person. Some possible reasons for that difficulty: cultural practices (myths, bureaucracy, professional interference, labels, power imbalances) physical environment (staffing ratio, lack of privacy, lack of time to spend together) professional protocols person’s history (learned helplessness, compliance, lack of trust) person’s ability/disability (comprehension and memory abilities, ability to make eye contact) person’s emotional status (fear, anxiety, moods, stress, trauma) person’s lack of experience with respectful communication partners partner’s approach (treating the person as an object, lack of belief in the person as a communicator) partner’s personality (laziness, pushiness, ignorance, professional arrogance, lack of respect) partner’s practices (lack of time/flexibility, non-genuine interactions, distractions) partner’s experiences (lack of confidence in self or over-confidence in expertise, competing roles) Personal Values Required by a Quality Communication Partner Being a great communication partner requires a variety of beliefs, commitments, and capacities: belief in the partner as a capable person who has something to say, even if she has an unusual way of saying it belief that all behavior is a form of communication belief in the equality of the communication partners belief in the value of the communication relationship, the person’s privacy, and the validity of the experiences of both partners commitment to the partnership: being present and listening carefully respect for the partner and the self confidence in your ability to learn and interpret the person’s communications desire to hear, connect, and know the person patience, persistence, and perseverance capacity to acknowledge difficulties when they arise Strategies to Improve the Communication Partnership honor the person’s privacy tend to the person’s basic needs (safety, physical comfort, emotional security) so that he feels safe communicating with you spend lots of quality time with the person, doing things you both like to do make eye contact with the person acknowledge behaviors: facial expressions, sounds, etc. (“Wow, that’s a big smile! You must really love this song.”) create opportunities for turn-taking in conversation and allow the person to initiate communication regularly allow mutual silence and wait for responses spend time in a place free of distractions and pay very close attention to the person be genuinely curious about what the person is trying to say at first, make assumptions and experiment to see whether you are correct keep trying! (Dennis, 2002) Conclusion For people who cannot speak, communication is a challenge, especially in American culture where verbal communication is valued over any other type. But given the proper supports and a quality communication partner, nearly anyone can communicate nearly anything. Supporting someone to communicate helps him gain self-esteem, engage in his surroundings, and take charge of his life. Resources Communication Tables At KNI, we use communication tables like this to keep track of behaviors that have been decoded by staff, their perceived meanings, and recommended responses: when this is happening: and Mark does this: we think it means: so we should: mealtime bites down on the spoon he is finished eating or you are feeding him too fast slow down, give him a break, or end the meal tooth brushing turns his head from side to side he is anxious about having his teeth brushed tell him what you want to do, ask his permission to brush his teeth, and chat with him calmly throughout the task listening to the radio claps, smiles, and sways from side to side he is enjoying the song help him listen to that song more often While communication tables are not perfect, they are a great starting point for identifying some of the most common non-symbolic behaviors used by the people supported. Resources Beukelman, D. R. & Mirenda, P. (1992). Augmentative and alternative communication: Management of severe communication disorders in children and adults. Baltimore: Brookes. Dennis, R. (2002). Nonverbal narratives: Listening to people with severe intellectual disabilities. Research and Practice for Persons with Severe Disabilities, 27(4), 239-249. Hourcade, J., Pilotte, T. E,. West, E., & Parette, P. (2004). A history of augmentative and alternative communication for individuals with severe and profound disabilities. Focus on Autism and Other Disabilities, 19, 235-242. Johnson, J.M., Baumgart, D., Helmsetter, E., & Curry, C. A. (1996). Augmenting basic communication in natural contexts. Baltimore: Brookes. National Joint Committee for the Communication Needs of Persons With Severe Disabilities (1992). Guidelines for meeting the communication needs of persons with severe disabilities. [Guidelines.] Available from www.asha.org/policy. Nolan, M. R. et al. (2008). The role of education and training in achieving change in care homes. Journal of Research in Nursing, 13, 411-435. Northouse, L. L. & Northouse, P. G. (1998). Health communication: Strategies for professionals. Stamford: Appleton & Lange. Olney, M. F. (2001). Communication strategies of adults with severe disabilities: Supporting self-determination. Rehabilitation Counseling Bulletin, 44, 87-95. Richmond, V.P. & McCroskey, J.C. (2004). Non-verbal behavior in interpersonal relations. Boston: Pearson. Siegel-Causey, E. & Guess, D. (1989). Enhancing non-symbolic communication interactions among learners with severe disabilities. Baltimore: Brookes. Sigafoos, J., et al. (2000). Identifying potential communicative acts in children with developmental and physical disabilities. Communication Disorders Quarterly, 21, 77-87.