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Philosophy
Kris’ Camp’s therapeutic philosophy has evolved from the professional experience of some of the core therapists in combination with the founder's goals and direction in starting Kris’ Camp. We do not adhere to one particular school of thought related to treatment, but utilize a positive approach based on several empirical findings and theories. We look at autism as a movement disorder: the inability to initiate, sustain, inhibit, or transition movements efficiently. We believe that when a person’s system is organized through sensory input, then they are able to regulate and modulate their motor output more effectively and thus able to demonstrate more of their true potential. We look at behaviors as communication and assess whether or not an individual’s self-initiated seeking of sensory input is an effective means of system organization. If not, we assist the individual in identifying a more appropriate accommodation for their daily life. Our approach is a positive, competency-based one in which we provide the least amount of assistance possible to promote the child’s independence and rely on their strengths to promote future successes. Within this framework, we encourage the parents to lead us in the treatment direction through their written/verbal input. Their goals and input then become our focus for treatment during the week.
Over the fifteen years that we have run our program, our techniques have evolved as we have learned from new research and others' clinical experience. Our approach is outlined below. Attachments include a recent thesis on skilled movements in autism with reviews of current literature on neuroanatomical differences in the autism brain and recent research on clinical motor findings in autism.
The idea that autism is a movement disorder has been historically controversial, possibly because the movement difficulties are more cognitive in nature than what would typically be thought of when describing a movement disorder. The best description of the movement disorder seen in autism is a disorder of praxis. Praxis is the ability to learn and perform a skilled movement. While many children with autism can learn a particular motor skill, the ability to generalize this can be limited, and the child can find himself 'stuck' in this pattern.
Regarding praxis, it is important to realize that while praxis is the ability to learn how to button your shirt, it is much more complicated than that. Praxis also encompasses the ability to recognize and pretend to do a certain movement and to sequence movements together. Any time emotion or fatigue is added to a situation, this can compound the difficulty.
In the last few years several studies have documented praxis difficulties in children with autism, and these difficulties are greater the more severe an individuals autism score from diagnostic tests. For a more detailed review with references see Chapter 2 of Skilled Movement in Autism thesis. Many of the supports we use attempt to address underlying praxis deficits. Imaging and autopsy studies have also evidenced different connective patterns in applicable regions in the autism brain. An autobiographical account illustrates this difficulty in a person with autism: in a Time magazine article, 2006, an autistic writer wrote:
"[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something... Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive." - Chandima Rajapatirana quoted in “New Insights into the hidden world of autism” by Claudia Wallis, May 15, 2006.
Treatment Components
Positive Approach/Empowering the Child
When we are talking to and working with the children we always assume competence. We assume that they understand us and we treat them with respect. While we incorporate supports that are similar to applied behavior techniques, we stay away from describing behavior as avoidance or attention seeking behavior, e.g. While this may be at least part of the cause of a behavior we instead try and address the supports that can help the child succeed and 'flip' a negative cycle into a positive one. This approach is based on the large body of research initiated by the 'Rosenthal effect' where if a teacher believes a student is gifted, they tend to do better, regardless of how the student placed on an exam. This effect goes both ways. If a teacher is led to believe a child is a 'problem' child, or less able, the child does worse. This is compounded for the child with autism who is not be processing the world, as a child with typical neural connections would.
We use supportive language to recognize and validate each child’s difficulties while promoting responsibility for self and others. Self-talk language is also used to facilitate interactions with others, engage in daily living tasks, and increase awareness of self in relationship to his environment. Two resources to get a better sense of a positive, respectful approach are a recent HBO documentary, “A Mother's courage: Talking back to autism”, and a video compilation of a young man with autism, Dov Shestack. This video clip can be found at www.strangeson.com.
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Understanding Autism as a Movement Regulation Disorder -
Least to Most Strategy
Findings by Dr. Philip Teitelbaum, a psychologist at the University of Florida in Gainesville, indicate that there are movement disturbances in persons with autism that effect perceptual-motor regulation (starting, stopping, and transitioning activities). In regards to motor output in persons with autism, he says that "the act gets done", which makes it hard to recognize that a problem exists, but he has analyzed that "the components of that movement are poorly integrated or disconnected." [http://www.autcom.org/articles%5CMovementRelationship.html]
Additionally, one of the most common neuroanatomical findings in autism is a decreased number of Purkinje cells in the cerebellum, and in children more severely affected with autism, an area in the cerebellum that connects to the premotor cortex is smaller, and motor maps, as seen on functional neuroimaging scans, are different and more diffuse in the autism brain. See neuroanatomical review, Chapter 1 thesis
Based on these motor findings, information and personal experience provided by individuals with autism such as Donna Williams and Temple Grandin, and clinical experience, Kris’ Camp Staff look at these difficulties and provide accommodations necessary to promote independence including sensory integration techniques, neurologic music therapy interventions, motivating factors, and self-responsibility.
When considering autism as a movement disorder, we utilize the least to most strategy with all interventions. This aspect of treatment allows the person the least amount of support needed for him or her to be successful in all presented tasks, including motor output and communication. It promotes the person’s independence while also facilitating success in a given experience, which then enhances his or her self-esteem.
Specifically we use a technique called “facilitated touch” to help with regulation of perceptual motor responses. This is the provision of light touch at the shoulder, triceps, elbow, forearm, wrist, or hand to promote initiation/inhibition of movement and/or sustained duration of motor output. Facilitated touch is not the directing of movement, but rather a touch cue to accommodate for one’s inability to initiate, sustain, or inhibit movement, i.e. regulate and modulate motor output. This external cue brings awareness to the part of the body necessary in performing a task and is provided only until an internal cue is developed. This accommodation is started at the shoulder for the least intrusive assistance and moved down the arm as needed by the individual. A recent study examining motor learning in people with autism indicates that people with autism rely more heavily on the internal sense of proprioception to learn a new movement, possibly due to smaller ‘U-shaped’ neurons that connect this sense to the primary motor cortex (Haswell et al. 2009)
This type of cue, while often utilized in motor tasks, is also important in allowing a person with autism to effectively communicate their intentions. (Please see Competency-Based Communication section.)
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Sensory/Motor Integration
Sensory Integration theory was developed by Jean Ayres PhD OTR, and attempted to explain mild to moderate problems in learning and behavior, especially problems in motor incoordination and sensory modulation, that could not otherwise be attributed to central nervous system insult. (Bundy, Lane and Murray 2002)
Sensory Integration theory was not developed with autism specifically in mind, though many children with autism are thought to have sensory processing difficulties (Baranek et al., 2006). Further research investigating sensory integration techniques and autism is needed, but the evidence that is available indicates that deep pressure and vigorous exercise can help decrease anxiety and seeking of movement or motor repetitive behaviors (Edelson et al., 1999; Baranek 2002). Based on these studies, known mechanisms of neural plasticity as well as clinical and neuroanatomic findings in the autism brain, we use a variety of techniques that incorporate and build on traditional sensory integration techniques to promote improved brain mapping and arousal levels and decreased anxiety levels with the ultimate goal of improving the child's ability to self- regulate and engage in relationships.
It has been theorized that disturbances in sensory modulation are the primary symptoms of autism and that disturbances of social relating, communication and language are consequences of difficulty in modulation of sensory input. A well-known example of the use of sensory input to improve regulation of behavioral symptoms is Temple Grandin's use of deep pressure with her squeeze machine (www.hbo.com/movies/temple-grandin/index.html). In the past several years, neuroimaging studies have indicated that neural connections in people with autism is different and that some neural pathways are under-connected, while other neural pathways are over-connected than is typically seen. As mentioned above, one example of this is small U-shaped neurons that connect the primary sensory area with the primary motor area. These connections transmit deep pressure or proprioceptive information and in children with autism, there is evidence that these connections are much stronger while other areas that connect to the primary motor area are weaker. While traditional sensory integration attempts to integrate at least two senses with an adaptive motor output, we also use sensory input in an attempt to help the child 'feel' their body through the proprioceptive sense and then produce motor output through meaningful activity.
At camp the whole team works together led by the sensory motor therapist (OT/PT) to provide a variety of interventions and activities designed to help the children integrate their systems more efficiently. As the week progresses individual needs are assessed for each child, and the team discusses approaches for each child every day after therapy. Useful approaches are then utilized the following day in therapy by the entire team for consistency, followed by further discussion of its effectiveness within staff meetings. As children with autism are adept at providing their bodies with self-initiated accommodations to provide sensory stimulation, therapists at camp work to replace any inappropriate seeking of stimuli with more functional and effective accommodations. Many techniques are utilized to provide system organization to the children and often include vestibular, proprioceptive, tactile, and/or rhythmic input.
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Neurologic Music Therapy (NMT)
Kris’ Camp music therapists involve each child in a variety of vocal and instrumental music therapy interventions which facilitate demonstration of current cognitive, communication, motor, and social skill abilities. Music experiences provide opportunities for creativity and choice making, encourage independence and problem solving, promote self-confidence, and facilitate awareness of responsibility to self and others.
Specifically, these therapists incorporate Neurologic Music Therapy techniques that identify the physiological effects of rhythm to entrain motor responses (stabilization, timing, and adaptation of movement) as well as promote organization of the sensory and motor systems. Through the application of rhythm, and its corresponding impact on these systems, these therapists engage individuals in experiences that facilitate functional output and allow for increased affective/emotional responses. Structured improvisation presented at an individual’s internal cadence is also used while incorporating elements of self-talk to encourage awareness of the experience as well as self-responsibility for one’s actions.
NMT is defined as the therapeutic application of music to cognitive, sensory, and motor dysfunctions due to neurologic disease of the human nervous system. It is based on a neuroscience model of music perception and production and the influence of music on nonmusical brain and behavior functions. Treatment techniques are research based and directed towards functional therapeutic goals. (Thaut, 1999). For more information about NMT, please visit: Center for Biomedical Research at Colorado State University
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Competency-Based Communication
Persons with autism typically exhibit difficulty communicating their wants, needs, and intentions. We believe that it is important to provide whole language communication methods that allow for demonstration of the child’s current level of functioning as well as enhance their functional communication. During each camp session, therapists assess each individual’s current method of communication, their motivation to use a given system, and potential accommodations needed to make those methods more effective or functional for the individual.
Kris’ Camp Staff also uses a variety of methods of competency-based communication which provide visual input to improve processing and language output including yes/no cards, word cards to indicate choice, word/phrase boards, and/or letter boards. The goal is to provide the child with a functional communication system that allows communication without reliance on verbal output. Persons with autism have shown that through the use of these systems, verbal language is developed and independence can be achieved. See Movement and Typing
When using these techniques, we also implement the least to most strategy. For example, if a child can immediately answer a given question related to choice without any input from the therapist, then that, of course, is a very independent response and no intervention is needed. If a child demonstrates difficulty, then ample processing time is provided, followed by the presentation of word cards. After a period of time, if no response is made verbally or by the touch of a card, then facilitated touch is used to help them initiate the move to a card. Facilitated touch as described above is started at the shoulder and then gradually moved down to the hand/wrist only after the child does not initiate movement. The use of these techniques accesses the visual sense in combination with the auditory channel in order to facilitate more efficient processing of information, and subsequent related output.
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Augmentative Communication/Pointing Methods
In the early 1990s, a method called facilitated communication was introduced in the United States through an article in the Harvard Education Review: Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291–314. Facilitated communication (FC) is an alternative means of communication for people who cannot speak or have limited verbal language. The technique has been used as a means of expression for individuals with severe disabilities including persons with labels of mental retardation, autism, Down syndrome, and other developmental disabilities. This method provoked huge controversy as while proponents claimed they had experienced huge leaps in communication with persons previously non verbal and diagnosed as mentally retarded, many attempts at validating the technique under controlled conditions demonstrated not only little validation, but also a strong potential for influence by the person facilitating.
Yet, there are many individuals who have used this method, starting out with resistance at their hand, for years and eventually became independent in their typing. It is our best guess at this point that many children with autism have the capability to learn to read and communicate through typing. But, children with autism are unusually susceptible to external cues as is evidenced in so-called prompt dependence in the discrete trial training of behavioral therapies. The scientific term for this is 'thigmotaxis'. This would be one reason that controlled experiments have shown a high likelihood of influence, yet the facilitators are unaware of guiding the person.
Other methods that appear to be based on the phenomenon of severe motor planning difficulties, with the ability to learn the written word are the Rapid Prompting Method and the Informative Pointing Method. Soma Mukhopadhyay is the mother of Tito, a child with autism who she taught how to type and then write. Tito is now a published author and currently, as a young adult, is learning to use his spoken voice. A recent documentary A mother's courage: Talking back to Autism (2009) demonstrates these techniques.
Our hypothesis at this point is that children with autism can learn not only pictures, but also written words. There is evidence through clinical and imaging studies in autism that indicate areas of the visual pathways that transmit information about objects (pictures or words) are intact, while pathways transmitting spatial and movement representations are poorly connected. The techniques used in all of these pointing methods take advantage of touch and rhythm to help the child access their motor pathways in a different way. The 'down side' of needing to use these techniques is there is the potential to influence the typer, as communication occurs.
One might say that because there is the possibility of influence, one should not use these methods at all. It is our position that to not give children who could learn to communicate through typing this opportunity, is much more detrimental. However, due to the controversy surrounding this technique, we acknowledge our ethical responsibility to train and educate Kris’ Camp staff in the proper use of FC and other communication methods to protect the individuals we serve. Additionally we emphasize the importance of using a least to most strategy to maximize the individual’s independence as well as supporting a whole communication system that will allow each person the most success in functional communication.
FC is one approach used to help those kids who are non-verbal in particular but there are many individuals who have used FC who have then been able to further develop expressive language. Additionally individuals who already have expressive language are able to convey more clarity and complexity of their thoughts and communication using typing, facilitated or not. Visual cues combined with physical prompts help many of our clients coordinate through higher-level relationship/motor planning tasks.
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Provision of Family and Therapist Support
Therapists meet at the end of each camp day to discuss individual responses, program changes, and implementation of treatment ideas at great length. All of the information gathered in these staff meetings is compiled in preparation for parent meetings at the end of camp. The multidisciplinary team coordinates recommendations for each family based on the individual’s responses during the 5 day program. By pulling from the range of disciplines with varying experiences, focused and led by parent goals, many of the kids experience a jump-start in their functional abilities at or shortly after camp.
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