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.
Prior to the recent debut of the Diagnostic and Statistical Manual of Mental Disorders 5th Edition or DSM-5 in 2013 (American Psychiatric Association 2013), Matthewâs diagnosis would be documented as PDD-NOS, or Pervasive Developmental Disorder Not Otherwise Specified. While Matthew displays many of the characteristics that would warrant a diagnosis of Autistic Disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th Edition, or DSM-IV (American Psychiatric Association 2000), he did not, according to the DSM-IV, meet enough of that symptomatic criteria, warranting instead a more accurate diagnosis of PDD-NOS. 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. However, Matthew shows few signs of the behavioral symptoms listed in the third set of diagnostic criteria for Autistic Disorder in the DSM-IV. He 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, non-functional 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, Matthew would be diagnosed, according to the DSM-IV, as PDD-NOS, a disorder that falls within the autism spectrum.
With the new organization of the DSM-5 though, Matthew, along with all children identified as having some form of autism, will be diagnosed as having Autism Spectrum Disorder. The diagnostic term PDD-NOS, along with Aspergerâs Syndrome (which will be discussed later) and a number of other terms previously used to diagnose autism, are not included in the DSM-5. The exclusion of these diagnostic sub-groupings of the autism disorders, found in the DSM-IV under the Pervasive Developmental Disorders section, have been solely relegated to the new category of Autistic Spectrum Disorder in the DSM-5. This one term now being used to diagnose all children falling within the wide range of social, behavioral and developmental symptoms and functioning levels of the autism spectrum has stirred some degree of controversy. These excluded diagnostic terms are, in my estimation, very helpful when describing, understanding and preparing treatment for the different types of ASD children. Although PDD-NOS and Aspergerâs Syndrome are no longer used for documentation purposes, I will use them as descriptive terms to impart a clearer sense of who these children are and how we can best relate to them.
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 acknowledgment of any of the people or objects that greet him as he enters the space. His father waves after him with a half-smile 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 and prolifically verbal form of ASD. Jasonâs teenage brother has Aspergerâs Syndrome. 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 as 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. Were he not able to respond to our directions, the combination of that 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 projected video image of themselves on the TV, wall or screen. We then hand out a formatted 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 explain to the group and make sure to remind them a number of times during the session that if they donât go this week, they will have a turn next week or the week after. 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 by name 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 projected up on the screen 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 t...