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Behaviors in Persons With CRS - A Response
Helen Keller National Center
As the Behavior Modification Specialist at the Helen Keller National Center (HKNC), I have worked directly with individuals who are deaf-blind, their families and service providers for the past ten years. I have had the opportunity to work with people of varying levels of abilities in nearly every setting possible. These opportunities are part and parcel of the great challenge of working at the National Center.
Although we see students with a wide variety of causes of deaf-blindness, one group which has always intrigued me are those who are deaf-blind and multihandicapped as a result of congenital rubella syndrome (CRS). So it was with interest that I read Nancy O'Donnell's article Questions About Rubella Continue to Surface (NFADB Newsletter Vol. 1, No. 1). I have dealt with many of the behaviors described in the article with our own students at the Center - rectal digging, issues with eating, sleep disturbances and so on. Nancy's question as to whether these behaviors were specific to individuals with CRS, a representation of behaviors occurring in the general population, or representative of those with developmental disabilities is a question with which I have wrestled for some time now. Although I would think that other individuals possess these characteristics to some degree, I don't have documentation of that fact.
Over the years, I have seen many behaviors that seem to be common to this group. From a strictly functional perspective, I have divided these behaviors into three categories: the need for ordered environments, ritualized behaviors and item adoration. These characteristics can manifest together and in varying degrees of intensity and frequency. But most importantly, each of these manifestations or characteristics has a real and meaningful purpose for the individual who exhibits them.
For many of us, the world is a dynamic place, constantly evolving and changing. We anticipate those changes by observing, listening and experiencing. We are bombarded by information. We ask questions. We make decisions about whether or not to participate in those changes.
For a person who is congenitally deaf-blind, the distance senses of vision and hearing are unable to provide enough information to help them anticipate changes in the world. Neurological challenges may not allow information to be accurately interpreted. The world can seem unpredictable. When a person can't see or hear environmental cues, then change can become something to be "afraid" of. I have also observed that very often, changes in the environment occur to, not with, individuals who are congenitally deaf-blind. This makes for an environment that is not trustworthy. I believe that is why change is often met with rejection.
The need for ordered environments is the first behavioral characteristic I would like to discuss. This is the desire or practice of an individual to maintain a consistent, non-changing world. These practices are not limited to their immediate physical environment, but often extend to the individual's daily schedule of activities. The possible purpose of this behavior is to assist the individual in "making sense" out of those areas of life with which they interact. It provides a sense of control for that person. Over the course of time, the individual's interaction with the environment becomes routinized. Activities can then be anticipated and the individual learns that the environment can be trusted because it is predictable.
In an effort to help make the environment more predictable for our students, several things can be done. Daily events can be scheduled - mealtimes, menus, work, recreation and so on. Augmentative communication systems can also be an effective tool to help students anticipate change. Object cues or symbols can be used to represent an upcoming activity in which they will be participating. Symbols can be given to a person before an activity begins, laid out for a daily schedule or set up on a weekly calendar. Activities which are scheduled should make sense to the person and occur in the "real" setting and at the appropriate time of day. For example, lessons in toothbrushing should occur during the morning and evening routine, not at an arbitrary time during the day when the student is scheduled into his or her daily living skills class. Finally, all of the people who come in contact with this person should respect and be familiar with their method(s) of communication. They should also be aware of the non-verbal messages that each of us deliver at a surprisingly high rate.
Ritualized behaviors are repetitive actions which continue in duration, process or frequency past that which is necessary to complete the task. It is often difficult for an observer to determine a function or purpose of the behavior(s). These actions often interfere with scheduled daily activities. An example of someone with a ritualized behavior is the person who wipes a table side to side and up and down and side to side and up and down, over and over again. When different, perhaps more efficient methods of accomplishing the task are suggested, they are almost always rejected.
Why do some individuals develop ritualistic tendencies? First, we must always consider the individual's personality. Second, we cannot fully know the implications of the rubella virus on the development and functioning of central nervous system. And finally we should take a look at our instructional methodology. In helping to establish an ordered environment for our students, it makes sense to teach skills following a well established step-by-step sequence. Yet, how does a teacher then introduce the subtleties of how to make a decision about when not to do something? Take, for example, wearing a t-shirt. How do you describe the changes in weather on a day-to-day basis or the fact that t-shirts aren't necessary for at least three months of the year? Sometimes, it's easier to have them wear one all the time. So, if a student tries to vary how he or she accomplishes that task, correction occurs. The result of this approach is that you end up with an adult who must always wears a t-shirt under their top shirt, even if it's a hot summer day. Two t-shirts on a summer day? It doesn't make sense...to me. But for some students, getting dressed means putting on a t-shirt first. Always. Forever. No exceptions. This may explain (partly) why some multihandicapped individuals with CRS appear to be highly ritualized. There is great comfort in ritual - a sense of beginning, middle and end. If communication is a challenge for an individual, then the environment often takes over and provides cues of, and for, security. Perhaps the feeling of safety is maintained via ritual. Perhaps. If even small parts of a daily ritual are changed - for example, if the t-shirt that one always keeps in their top drawer is missing -- what else is going to happen to him? Is danger present? Will he be injured? Whether or not the individual is even aware of these events on a conscious level is something we simply cannot answer.
In cases where ritualized behaviors have been changed by someone or something in the environment, the result is often that the person who is deaf-blind becomes self-injurious, aggressive toward others or destructive of property. Why? This may be their attempt to take back control of the situation. The notion of behaviors that are "good or bad", "appropriate or inappropriate", and "functional or dysfunctional" need to be excised from the discussion here. These words are not in the experience of the individual who is manifesting the behavior. To that individual, the behavior that they exhibit is "good", "appropriate", "functional" because it helps them achieve their goal. The behaviors in question are usually not "good", etc., to the people who have to interact and address the behavior in question. To these people, what is often seen, or more importantly felt, is that the individual is simply not complying.
I want to emphasize the "feelings" aspect here. Unlike working with any other population, working with an individual who is deaf-blind is so very tactual. An "earthy" relationship is created between the parties who interact together. As a service provider, I must always assess my staff's, as well as my own, objectivity and subjectivity concerning the needs and progress of the people with whom we work. Individuality plays a huge role in this discussion.
The ramifications of this realization are that steps are very difficult to add or subtract from established routines. Newly taught tasks must be weighed when being analyzed for instruction. The "building in" of variation for new tasks is therefore an essential element for the individual who manifests ritualized behaviors. Changes in seats at work for example can occur on a daily basis. Issues of Orientation and Mobility weigh heavily here of course. What I am referring to is behavioral intervention not vocational programming. In most every circumstance where changes in ritualized behaviors are necessary, behavioral control will outweigh all other concerns. This will be seen especially if the individual manifests aggression, self injury or destructive behaviors. Even when addressing deeply practiced behaviors (wearing the t-shirt for example), attempts at variation are possible. Simply giving the person the opportunity to pick which t-shirt they put on is a start. From there, who knows? In the same way that it took time for the individual to learn that they had to wear the t-shirt, it will take time for him to learn that he will have a choice as to which t-shirt he wants to wear. Perhaps in the future, the decision as to whether to wear a t-shirt at all will be made.
A quick word about the now popular use of "choices" in the lives of individuals. The truest test I have ever discovered that assesses the amount of "choice" in an environment is the response of the environment to the individual when they choose to say no to a requested or demanded task. The student's choice can be expressed in many ways. It can be as simple as the student continuing the ritualized behavior in the same manner as before. The refusal can be active, where the student pushes the teacher away. Or the student may stop all activity. Inactivity should not be mistaken for non-responsiveness. Actually the individual has responded. Their inactivity may be interpreted as "I don't understand what you said", "I'm thinking about what you just said" or "I don't want to do what you just said." Their message may not have been signed or spoken. But their behavior has communicated their intent to us. It may not be the answer we desire. There is no doubt, however, that a meaningful communicative response was made. This is an essential point for everyone to understand.
Our response helps to shape the person's understanding of the communication process. We may need to repeat our request in a different manner, giving more information. Or, we may just need to respect the person's negative response.
The third characteristic or manifestation is item adoration. This is a practice where an individual places a great deal of emphasis upon a specific object or objects. Extreme reactions are possible when these objects are taken away or missing.
Given the isolating world in which many individuals with CRS exist, identification with family, peers and staff is often difficult to initiate and maintain. If the person who is deaf-blind communicates only through his or her behaviors, it requires a serious commitment of time and energy to establish a relationship. Partially as a result of behavioral and communication issues, staff persons may avoid interactions with the individual with CRS. Many staff are not intuitively tuned into "behavior as communication," so communication is reduced to directives to the person who is deaf-blind, which only leads to more isolation. Relationships with other people, then, are not interactive or reliable. Material items are accessible, predictable and reliable. Is it any wonder, then, that material items take on a status of great importance? Some persons may become attached to whole items: a watch, book, pen etc. For others, it may be parts of the whole that the person wants: a watch band, pen cap, or the plastic bag used to wrap eating utensils. Some individuals use their items to complete tasks that they desire.
What is one possible positive outcome of item adoration? If the individual has been able to identify with an object, then the challenge is to see if identification with people is possible. The call is for those who interact with this individual to work on building trust through meaningful interactions, consistency and respect. The outcome is surely worthwhile.
In looking at people around us - all people - we can usually identify "quirks" in their personalities. This one is a "clean freak", that one a "slob." He's "laid back," she's "hyper." The trap we fall into is that the person becomes identified by their behaviors. We've all seen this happen with our students - "he's a headbanger"; "she's a biter", and so on. The effect of behavioral stereotyping is that an individual becomes defined by one aspect of behavior they exhibit. In the minds of the staff, they ARE that behavior. And often, this leads to further isolation.
In order to maintain perspective, we must make a conscious effort to be more fully appreciative of the total person. We must look beyond the behaviors, try to understand the idiosyncrasies, and always keep the person in mind. What is this person trying to tell us by their behaviors? Are there medical implications? Is this behavior an attempt to bring order to their life? Have they experienced many changes lately? Are they possibly feeling "out of control?" If the behaviors are harmful, the individual will learn that there are consequences for how they act and behave. They have to be given different options. It requires a lot of creativity on our part and sometimes many hours of support and supervision. However, if there is a limited understanding of appropriate social skills, how can we expect any individual to simply know even the most basic social mores that govern our lives? Opportunities for social interactions and communications are paramount.
Behavior Modification, I have learned from my students, is first and foremost about the modification of my behavior. My attitudes and practices have changed over the years as I have watched and learned from all of those around me. Let us all learn from those around us, strive to understand and respect individual differences. And if you're thinking of wearing a t-shirt today, why not try wearing two? Our students may just know something that we don't.
(John welcomes any feedback or discussion about this article. You can contact him at HKNC, 111 Middle Neck Road, Sands Point, NY11050.)
NFADB Newsletter, Fall 1994