Part I
Behind the Scenes: Theoretical Constructs
Chapter 1
Dramatic Encounters
Matthew
Matthew receives a kiss from his mother and steps tentatively into the group playroom. At six years old, his face portrays a combination of suspicion and confusion as he looks around, taking in everything or nothing in particular. He cautiously walks the perimeter of the room with an uneven gait. As we greet and address him, he responds with words and fragments of sentences that are at first inaudible and ultimately unintelligible. He stands at a distance from the ten other five- and six-year-old boys who are busying themselves with the play objects in the room. Some of the boys play with each other; some play alone with the objects; others are content to amuse and lose themselves, for the moment, in their own thoughts. Matthew, it seems, does not know what to make of this scene. Matthew is one of the many children, a large majority of them boys, recently diagnosed with some form of autism.
Specifically, Matthewâs diagnosis is PDD-NOS. While Matthew displays many of the characteristics that would warrant a diagnosis of Autistic Disorder, which is also in the PDD category, he does not meet some of the symptomatic criteria listed in the Diagnostic and Statistical Manual of Mental Disorders (4th edition), or DSM-IV-TR (American Psychiatric Association 2000).
Matthewâs social interaction is impaired in the same way that a child with Autistic Disorder is. He makes little eye contact. His facial expressions, body posture and gestures are somewhat rigid, awkward and difficult to understand. He appears to have very little if any spontaneity with regard to sharing interests and enjoyments that eventually lead to the development of peer relationships. He has tremendous difficulty reciprocating any type of social or emotional communication. His spoken language is delayed and, initially, he demonstrates no interest in make-believe or interactive play.
While Matthew meets these criteria for Autistic Disorder, he shows no signs of the behavioral symptoms listed in the final category, according to the DSM-IV-TR. Matthew does not appear to be intensely preoccupied with repetitive or stereotypical patterns of restricted behavior related to a particular interest or focus. He shows no adherence to specific, nonfunctional routines or rituals. He has no motor mannerisms or tics, such as hand or finger flapping, or body movements such as repetitive twisting. Matthew does not display any persistent preoccupation with parts of objects. Barring any of these symptoms, Matthewâs diagnosis is relegated to PDD-NOS.
During the first few sessions of our weekly Saturday morning social and emotional skills development program for children diagnosed on the autism spectrum, Matthew is compliant and cooperative. He parallel plays quietly and uneventfully with the various objects and does not initiate interaction with the other children. He responds to the demands of basic group protocol, follows procedures, manages transitions, helps clean up toys and sits in our meeting place when we begin structured activities and discussion time. Yet he is quiet and almost non-responsive with regard to expressive language, and he barely involves himself in the general flow of group process. He participates in the activities in a mechanical manner with rigid body posture, flat affect and, except for what is required by the activity, minimal interaction with the other children and staff.
One morning, though, Matthew wanders over to the baskets of costumes. After shuffling through the various pieces, he takes hold of two cheerleader pompoms and begins shaking them in front of his body, looking at them quizzically. After a few minutes, he raises the pompoms up above his head, stretches out his arms and shakes them in a rhythmic motion that is soon accompanied by bold strides around the room and a broadening smile across his face. As we encourage him, he walks up to some of the other children, smiling with excitement at this activity he has created. Some of them smile back. Some of them join him. Soon, Matthew adds a loud and relatively clear âRah-rah!â and âGo, team, go!â to his routine.
As the sessions progress, Matthew spontaneously experiments with other costumesâa cape, a clown nose, mouse earsâalways positioning himself in relation to another child after his wardrobe is complete. He applies language to this self-initiated activity, standing in front of his audience with his broad smile, as if to say, âSee me, so we can share and enjoy together what I have created!â This significantly more animated and connected affect acquired through his encounters with the costumes soon finds its way into his participation in the activities of the program, prompting him to be generally more responsive, humorous and interactive with the other children and staff. Matthewâs experience with the costumes allows us to see and cultivate a different and perhaps newly activated neurobehavioral pattern related to these otherwise pervasive developmental delays.
Jason
Five-year-old Jason, a strikingly handsome boy from the same group, with dark curly hair and big brown eyes, walks into the room with a vacant stare and no visible or audible acknowledgement of any of the people or objects that greet him as he enters the space. His father, with a resigned smile, waves after him and calls, âBye, Jason⌠Have funâŚâ in a manner that expresses sincerity and resignation, at the same time knowing that he will get no response from his son and wondering if his words of encouragement register at all in Jasonâs world. After standing a few feet from the entrance for a couple of minutes, Jason eventually finds some nearby crayons and settles on a spot on the floor. He begins lining up the crayons in patterns known only to him and continues this activity for the duration of the initial ten-minute open-play period of the session.
Occasionally, he utters what sounds like gibberish syllables in quiet, high-pitch tones. At the same time, he grasps his hands together, bends back and wiggles his fingers in ritualistic fashion while stretching his arms over his shoulder. He does not acknowledge the staff members who sit next to him on the floor and start playing with the unused crayons in attempts to interact with him. His mother claims he has Aspergerâs Syndrome, a significantly higher functioning form of PDD also listed in the DSM-IV-TR that will be discussed later. Jasonâs teenage brother has Aspergerâs Syndrome, and his father, who brings him to the program on Saturdays, feels that Jasonâs symptoms go beyond Aspergerâs. It is clear that Jason has Autistic Disorder.
Jasonâs eye contact at this point is non-existent. While Matthewâs furrowed brow and suspicious facial expressions awkwardly respond to his environment, Jasonâs facial expressions appear to have no connection to what is going on around him. He will suddenly smile and twist and flitter his fingers, stimulated and amused by something that occurred only in his mind. His posture is not as rigid as Matthewâs, but his sudden tics and body twists are unpredictable and pronounced. There is no sharing of interests or enjoyment, and no emotional or social reciprocity, even when a staff member pursues the most basic connection by paralleling his crayon play, gently interacting next to him on the floor.
Jasonâs language is restricted to gibberish syllables and âTV talk,â repeating words and short phrases from television shows that are not relevant to the social situation at hand. He will occasionally respond with simple one- or two-word answersâmostly âyesâ and ânoââto basic questions such a desire to sit in a certain spot or need to use the bathroom. Sometimes he will repeat, or echo, a sentence or phrase prompted by a leader to say within the context of an activity. Any make-believe play is restricted to repetitive and stereotypical patterns of behavior related to a particular focus, illustrated by his preoccupation with lining up the crayons.
Luckily, Jason shows some flexibility and does not adhere to these routines to the degree that it becomes impossible for him to function in group. He is receptive and responsive to language from staff members that prompt transitions and group procedures. When he hears that it is time to clean up, he throws the crayons in the bucket and moves quickly to the specific spot he likes to sit in. If he were not able to respond to our directions, that combined with his lack of expressive language would preclude him from participating in our group, which is geared for higher functioning children. He follows our basic protocol, which is certainly beneficial to his socialization; but he does not, at this point in time, respond to any of the more sophisticated, language-based concepts presented during the activities.
Later on in the season, the children use videos to work on specific social, emotional or daily life situations from actual life experiences that are challenging to them. The children choose which scenario they want to work with, or their parents suggest one, prompted by a notice handed out a week earlier. Children and parents come up with specific situations, such as joining in with a group of cousins at a family function, managing frustration when itâs time to leave a playground, dealing with videogame defeats or accepting a familyâs decision on which restaurant to go to. Jason is not able to tell us what situation he wants to work with. His father writes down that he would like Jason to work on simply greeting others and responding to greetings when he enters a room or space.
The children prepare for this activity by taking turns sitting in the directorâs chair and telling their stories, sharing what is difficult for them and brainstorming approaches and solutions with the group that might improve their situation based on skills learned from previous sessions. They then cast their shows, choosing members of the group to play different roles from their stories. The children telling the stories play themselves. We do a quick run-through and then use a video camera to film their âmovies,â reflecting the more empowered responses to the situation suggested by the group. After we complete three or four, the amount allowed by session time limitations, we watch the movies together, placing the protagonist of each show in the directorâs chair, close to the television set. We then hand out a âCertificate of Successâ with much pomp and circumstance, indicating what the child âwas able to get better at.â
At this point later in the season, Jason has warmed up to the program and the process. Vacant looks have been replaced with occasional smiles, and he has some limited interaction with certain staff members who have been able to enter his world over the past couple of months. This video activity usually takes three sessions to complete all the childrenâs stories. We wanted to wait until the second or third week to do Jasonâs show, so he could watch the other children and become more comfortable with the procedure. But when the session ends after the first week of the video activity and Jason doesnât get his certificate, he is beside himself (to use a phrase which speaks in another context to a key goal of the activity that will be discussed later). He cries and fusses, calling out, âMy paper! My paper!â He is not consoled when we explain to him that he will have a turn next week, indicating all the other children who did not get a paper this week. His father tries to reassure him as he spills out into the waiting room, angry tears still dripping out of his big brown eyes. He does not calm down until we give him a blank certificate to take home.
Jason comes to group the next week and enters the room with a big smile. It is his turn to tell his story. He hops onto the directorâs chair and smiles at the group sitting in front of him on the floor. I ask him what his show is going to be about. He says, âShow!â and continues to smile at the group. As I help to narrate his challenge, he calls out, âShow! Kids!â and then, âHello!â in a singsong voice, as if he is rehearsing for the upcoming event. He is able to pick, on his own, two children from the group to play the parts of friends that he will greet. As we set up the scenario, placing the other two children on the stage and getting the camera ready, Jason walks up to them, saying, âHello!â before we are ready. We are inspired by his enthusiasm and guide him to repeat his performance with the cameras rolling.
Jason waits patiently for his turn to watch his show on the television toward the end of the session. He glows with excitement as he climbs into the director chair. He sits, literally on the edge of his seat, body tilted toward the screen, eyes wide, connected and framed by a radiant smile, seeming to absorb every moment. He proudly accepts his certificate and joyfully waves it at his father after we dismiss the children. His father informs us that he made copies of the blank certificate we gave him last week and now uses them to reinforce and reward other desirable behaviors that he looks to cultivate in Jason. Jasonâs positive response to this activity reflects a general comfort level with the program that took him a number of months to develop. The activities and approaches of the program seem to have accessed and engaged a perhaps dormant aspect of Jasonâs functioning, empowering him to connect to the process in a clinically meaningful manner.
As the season progresses, Jason is able to invest in his emerging ability to reciprocate socially and emotionally. He consistently seeks out certain staff members to play and laugh with and will plop himself in their laps. He is more attentive, communicative and responsive during structured activities, speaking to staff and other children with more extended phrasing. Some days he greets us with a happy âhelloâ as he enters the room; some days he does not. But, even on the days he does not greet us verbally, he makes contact with a quick glance toward our eyes and a huge smile that appears to say, âIâm excited to be here, and Iâm happy that you are here, too!â Jasonâs perception of his presence on the screen seems to have supported him toward a more functional presence in the group.
Kenny
We hear six-year-old Kenny talking as he makes his way down the hall toward the group playroom. His speech, although highly idiosyncratic, is appropriately loud, clear and articulate, but he is alone, and his words are lifted verbatim from a television show or some other media source that he has encountered. He enters the room and gives me a big hugâa habit his mother is trying to breakâand says, âOh, hello, Dr. Lee! How are you doing?â in his exaggerated singsong voice. We remind him about the hugs and he separates himself, extends his hand and repeats the same phrase in exactly the same tone. He doesnât wait for my answer, and moves toward his favorite section of the room as I bend down to make eye contact and respond to his question. I call him back and he returns, but his thoughts are already somewhere else as I try to engage him. As he breaks away to find his spot by the cushions, he tosses me, in his attempt to satisfy my desire to connect with him, some gratuitous acknowledgement of my response.
Like Jason, Kenny has Autistic Disorder, even though he is clearly more verbal. Eye contact is infrequent and on his terms. He might look right at you if you comment on the dinosaur he has brought to group while telling you that it is a Brachiosaurus from the Jurassic period, but heâll likely shift and look past you, and then break away completely if you ask him a question, even about the dinosaur, that is not part of his prescribed agenda. He will probably continue to recite other facts about the dinosaur he was prepared to list in his singsong voice as he wanders away.
At this point, Kenny demonstrates no interest for symbolic, make-believe or interactive play. He focuses on and interacts with parts of materials, objects or toys, rather than approaching and using them as a whole. His onset of language was markedly delayed as a toddler, and while he has come a long way in his articulation, vocabulary, syntax and comprehension, he has a significantly difficult time using his language skills for pragmatic social communication. He functions fairly well within the dynamic of our group protocol, although he may need numerous prompts when the group transitions, as he remains fixated within his own fantastical thoughts. He may offer a comment during our group discussions, but it is more often than not a rendition of where his thought process is at the moment, a non-sequitur rarely relevant to the topic at hand.
Kenny begins most sessions by rolling and twisting his body around the cushions, isolated from the other children, echoing lines and dialogue he has absorbed from television or other forms of media. Occasionally he will reach out to staff members and children in the group and attempt to engage us with his ideas and thoughts, but he will only maintain contact if we function within his agenda as passive mechanical aids, responding in some intended manner known only to Kenny. He will detach and continue his conversation with himself if our nudge toward social reciprocity, the response to the input of another, is too much for him. We strive to hit the âsweet spotâ of meaningful and reciprocal interaction when talking with Kenny, straddling the line between playing the part he needs us to play, while gently maneuvering so that he will perceive and respond to our input.
We notice one morning that Kenny has begun to invite puppets into his world during the open-play period. Before he goes to his spot, he retrieves one or two or three puppets and takes them back to the cushions. He rolls around with them and speaks to them individually or as a group. Sometimes he seems to wait for their response. Every now and then, we see him glancing, for a few seconds, toward the more typically raucous scene on the other side of the room where a group of children enthusiastically play together with their puppets at the puppet stage.
In a few weeks, Kenny begins moving around the room, puppet on his hand, talking sometimes to himself, sometimes to other people, through the puppet. One morning, as he approaches another child with the cow puppet, we notice a shift in how he is communicating. Instead of speaking from his pre-existing set of ideas that have no bearing on the social encounter, Kenny says, âLook! I have a bell!â referring to the bell around the cowâs neck. His speech is still highly idiosyncratic and not very age appropriate, but the content is relative ...