Katherine Moxness, M.A., Joanne Lefebvre
This paper was written to share the experiences of one family and their daughter, Annie. Annie was diagnosed with autism, a mood disorder and demonstrated severely challenging behavior. In the first section, Annies mother outlines the historical development of her daughters problems and their difficulties and struggles to access and receive appropriate treatment and services for her. In the second section, the psychologist outlines the treatment plan and team approaches used to assist Annie in successfully moving from a psychiatric unit back into the community.
When Annie was diagnosed with autism at the age of two and a half, the psychiatrist said there is no cure, theres nothing you can do for her. Perhaps there is no cure but my daughter is certainly proving that the rest of that statement was utterly wrong.
Anne made steady progress in her early years, especially thanks to a gifted nursery school teacher, Sheila Miller. During adolescence all hell broke loose. Episodes of aggressive behavior involving pulling her own hair and that of others, throwing furniture, running away and frequent intensive screaming, which led to her expulsion from the school bus, then from school. No one had any suggestions for improving this behavior. Different medications were tried. A helmet was used to prevent the hair pulling, but Annie loved that helmet. She would put mittens on her hands, pleading for the ends to be secured with masking tape so as not to have access to her hands. She wanted to stop, but she did not know how. For a time, a behavior modification unit led to some improvement, yet physical restraints were part of the treatment plan there.
An incident of abuse while in care on the unit, confirmed by a Department of Youth Protection investigation, motivated us to remove her from that environment immediately, even though she was not due to come home until after the summer. Although we did the best we could to cope until the start of a new school year and a new school, things nevertheless deteriorated. At a residential camp, Annie seriously injured another person. The police were at our door (we feared criminal charges). The injured person was suing us. Annie had no professional support whatsoever at the time, even though we had made panicked phone calls everywhere. Furthermore, Annies father was recuperating from angioplasty following a heart attack, and her younger sister was having to live across the street at a friends house for a while because she was too afraid to sleep in her own bed at night. (Annie had tried to knock down her door). This is how our beloved daughter ended up in a psychiatric hospital, until a more appropriate solution could be implemented. Little did we know just how much pain, effort, and time it would take.
Annie fell into a gray zone, tossed between the two service systems for people with mental handicap and people with mental illness, neither of which was prepared or equipped to help her. We found other families experiencing a similar hell and began advocating for our children together. We succeeded in motivating our Health Board to commit themselves to concrete action to create more innovative services for handicapped people with challenging behavior. As a part of this process, several persons who were considered desperate and difficult cases were identified for assessment to determine diagnosis and recommended treatment. Annie was one of these cases. Two NADD professionals were invited to conduct the assessment. It was only after this evaluation was done for Annie, by Dr. Dorothy Griffiths and Dr. Robert Sovner, that appropriate interventions began to be mobilized, after three years of hospitalization.
In September 1996, at the request of her parents, a comprehensive evaluation was conducted to assess Annie, who was diagnosed with autism and mood disorder, by Dr. Dorothy Griffiths, behavior consultant, and Dr. Robert Sovner, psychiatrist. Both, seen as experts in the field of dual diagnosis, made several significant recommendations based on a mufti-dimensional approach (Meyer & Evan, 1989, as cited in Griffiths, 1996). Dr. Griffiths outlined both short-term, intermediate, and long-term strategies in her report (Griffiths, 1996) to provide the clinical recipe for successful transitioning of Annie from a psychiatric setting to the community. In the following section of the paper, we will describe the clinical process that was used to address Annies areas of difficulty and we will describe some of the alternative strategies taught to her, designed to assist her with the transitioning to the community.
Short-term Intervention-Term Interventions
In the summer of 1997, Annie lived on a psychiatric unit with 23 to 25 aggressive and actively psychotic patients. She was the only patient with autism on the unit; the unit staff were not well versed in how best to support a person with autism. The major presenting problems included aggression (hitting or kicking), self-injury (pulling her own hair, head banging), and disruptive behaviors (throwing furniture). In addition, she engaged in repetitive behaviors such as asking questions over and over again. This behavior was seen as a precursor to aggression and destructive behavior. Aggression to others was reported to occur approximately twice a month and was of low to medium intensity and low duration. Self-injury occurred approximately once per month and was reported to be of high intensity with a duration lasting up to 20 minutes. Disruption of furniture occurred twice weekly for episodes lasting for only 2 or 3 minutes. Repetitive questioning occurred daily at a high frequency (greater than 10 times per day) and could last for 5 to 10 minutes.
A multi-disciplinary team, composed of parents, behavior modification agent from the hospital setting, teaching assistant from the school setting and psychologist from the future readaptation setting, was created. The team tackled the first short-term goal for Annie, in this case, modifying her present living environment as much as possible to reduce the instigating and contributing influences on her problem behavior.
Annies pre-intervention environment consisted of a large psychiatric unit; T shaped with a long corridor with bedrooms and washroom along the side and a sitting area at the very end of the hallway. Annie, who did not have any day or evening activities, spent the majority of her time either in her room or in the sitting area (with the TV). Annie spent the majority of her day in a posey jacket, which did not allow her access to her hands. When agitated or non-compliant, she was immediately placed in an isolation room or an argentine suit or A-suit (which is a five point restraining mechanism). Due to the staffs lack of understanding of autism, Annies behavior was often misunderstood. For example, when she would rock while watching television, staff evaluated this as agitation. If she did not stop when asked by the staff; she would be defined as non-compliant and therefore isolated. If while in isolation, Annie screamed or banged her head, and then she was placed in the A-suit, for periods which on occasion were greater than two hours.
Due to the funding provided by the Health Board, under the title of Severe Behavioral Challenges (a project pioneered by active and involved parents), the team was able to inject additional manpower supports to provide Annie with a more stimulating environment. They introduced 12 hours weekly of educational and recreational activity with a teaching aide, as well as five hours weekly of clinical support from both the behavior modification agent and the psychologist. To support Annie with this change in routine, a pictoboard outlining Annies schedule of activities, sessions and parent visits was designed to assist Annie in anticipating pleasant events. The pictoboard itself reduced anxiety and decreased the need for repetitive questions, since some questions were caused by uncertainty and/or anxiety.
The multi-disciplinary team met regularly to establish verbal interventions and protocols to ensure consistency in approach (Griffiths, Gardner, & Nugent, 1998). In this way anything that Annie was being taught in the individual sessions was immediately transferred to her work with the teaching aide and to the parents to ensure generalization of skill building (and vice versa). Any successful intervention noted by the teaching aide or the parents was also shared and integrated into the plans.
In the individual clinical sessions, Annie was removed from the unit and brought to a work room where she was taught the preliminary coping strategies she would need to live in the community. These coping strategies included relaxation skills, social skills, and anger management skills. An example of the anger management skills that occurred in the individual sessions was as follows:
The therapist presented cut out pictures of different persons faces from a magazine (people crying, people laughing, people angry) and would ask Annie to identify if the person was mad, sad or happy. When Annie identified that a person was angry, she was asked what could the person do to stop being angry. She was given choices (verbally and through pictograms): take a deep breath, talk to someone, rock, and lie down. These choices were identified for a number of reasons; Annie was learning relaxation skills (hence the deep breathing), Annie was able to express herself (talk to someone who will listen), Annie expressed clearly that rocking and/ or lying down was soothing (hence rocking and lying down were given as alternatives). The therapist would then ask Annie what made her angry and would ask what she could do about it (take a deep breath, talk to someone, rock or lie down) and what she should not do (aggress, throw objects, scream or self-injure). Once the session was finished, Annie would be positively reinforced for her efforts with cashin which involved listening to the radio for a period of 15 minutes. A timer was placed close by for her to know when the 15 minutes would come to an end, and the therapist would provide her with a verbal prompt (last song, Annie), allowing her to prepare for the end of her cash-in. Annie was taught the sequence of events in a session.
The initial impact of all these supports (increased activities, teaching sessions etc) resulted in an immediate decrease in behavior problems. It was essential that the therapists, as well as the team as a whole, understood how Annie thought and processed information and the function her behaviors served. Strategies were then designed and taught which she would call on in the future to cope with living in the community.
Initially, what was clear, both from the functional analysis of the behavior and through continuous data collection by the team, was that Annies needs had not been met on the unit and that the majority of interventions used by the unit staff were clearly negative and aversive in nature. The staff on the unit did not understand her language and did not know how to respond consistently to her questions. This inconsistency, according to the data, accounted for a significant amount of the challenging behavior. Therefore, the psychologist designed a verbal intervention board for the unit staff in which the regular questions asked of them by Annie and their responses were outlined. For example, ifAnnie asked first I have my shower and then 1 watch TV?, staff were asked to respond you know the answerAnnie or What is the answer or Lets look at your schedule board. IfAnnie asked a question involving Why? staff were instructed never to answer 1 dont know and instead ask you tell me the answer Annie or you know the answer. The impact of these verbal interventions on Annies behavior, repetitive questions and aggressions resulting from her dissatisfaction with the answers provided by staff, were noted immediately. The questioning was reduced and fewer episodes of behavior escalation, as result of poorly answered inquiries, occurred.
Staff on the unit also required training on understanding autism and the needs of people with intellectual handicap, as well as the personal rights of this clientele. According to the data collected and through direct observation, staff on the unit were provoking behavior by not listening and/or respecting Annies individual needs. For example, in the data collection it was noted that Annie would be placed in the A-suit systematically at 9:00 PM for refusing to go to bed. When the therapist observed, it became clear that Annie, like most adults, was not tired at 9:00 PM. Moreover, her bedroom was located next to the day room, where the television remained on 24 hours a day. One of Annies difficulties was that she is extremely noise sensitive. Thus even if she had wanted to give up the pleasure of watching television to go to bed, or was truly tired at 9:00, she would be unable to fall asleep due to the noise in the environment. These types of issues were addressed regularly with the unit staff and adjustments were made. The results were that Annie would go to bed later, like any adult, and would receive adequate amount of warning prior to having to go to bed. Unit staff were asked to review with Annie all her accomplishments of the day and what her schedule would be like the following day. The results of this intervention was an immediate reduction in the use of the A-suit prior to bedtime.
Once skill building and intervention supports were acquired, the next goals involved implementing and utilizing these skills in different environments. With great effort on the part of her parents, in the fall of 1998, Annie was integrated into a school system. Again with great effort, the school system agreed to maintain Annies teaching aide in the classroom to ensure consistency in approach and to increase the likelihood of successful integration. The mufti-disciplinary team met regularly to update, modify and adjust the intervention plans while maintaining Annies regular individual sessions.
A schedule board was designed for Annie so that she knew the sequence of her day as well as when she would receive her cash-ins (4 times x 15 minutes every day at school). As her schedule grew with booked activities her behaviors reduced. Certain adaptations were required such as organizing special transportation to and from school (all drivers were trained) and the introduction of headphones to cut the noise level in the classroom or to minimize the uncomfortable noise level found in the transition in and out of the school, as well as for outings in the community.
Therapy sessions changed toward a focus on preparation for Annie to move into the community. We described a house, identified her dreams for her future room, and outlined the community expectations relative to her behavior. At one point we met a therapeutic impasse, when Annie could not understand why she could not live with her parents. For her, it did not makes sense that she would be living with a caregiver instead of with her parents. It was at this point, the therapist began introducing the concept of being an adult and behaving like an adult. In the individual sessions, intervention moved away from visual boards and focused on written sequences of logic. For example, when asked, why cant I live with my parents? the response was the following; Adults dont live with their parents, adults go to work, Annie is an adult.
In the spring of 1998, a caregiver was added to the team working with Annie. The caregiver and Annie were slowly exposed to one another and the team trained the caregiver relative to all of Annies needs. An integration plan was build with Annies needs in the forefront. Annie needed to be comfortable that the caregiver knew her clinical interventions inside and out, her language, and how to prompt her to use her coping strategies in periods of difficulty. This process took until July 10, 1998, when Annie moved from the psychiatric hospital to her new home in the community. Everything that was designed to assist Annie in coping with daily living moved with her: her schedule board, her verbal interventions (re: questions), and her coping strategy interventions (how to de-escalate her behavior using relaxation). What did not move with her were restrictive aversive measures, such as her posey vest or A-suit. They were no longer a part of her life or her future.
The proactive and positive supports provided to Annie in the hospital transitioned with her. Weekly sessions with the psychologist, behavior modification agent (until November 1998), scheduled visits with her parents (Wednesday night and all day Saturday) were all maintained. Moreover, she continued to have the same teach ing aide at school. The teaching aide also provided weekly respite for the caregiver (Tuesday evening and Sundays). Annie was succeeding in the community.
In February 1999, Annies caregiver left her responsibilities without notice. Annies coping strategies as well as the team supporting her were put to the test. Naturally, given the stresses experienced by Annie during this time, behaviors that had not been seen in several months; head banging, hair pulling and aggression, returned briefly. To ensure some stability, the teaching aide was asked to provide temporary respite support. She agreed to that and more. At the end of February 1999, after receiving approval, the teaching aide, who had a long time presence in Annies life, became Annies new caregiver.
In June of 1999, Annie faced another challenge. School, a staple in her life, was now over because she had turned 21 years old. Expanding on our written interventions of logic, we began introducing the concept of school is for kids, Annie is an adult, adults go to work, therefore Annie will go to work. She was given visual maps of the environment, verbal descriptions of the type of work she would be doing and a choice between two settings. Annie selected one and, with the psychologist and the caregiver, trained the staff who would be assisting her in her new environment. The adjustment was difficult. Emotionally, it was hard for Annie to let go of school and move on to the adult world of work. As we reach the beginning of August 1999, she has, however, been successful.
Conclusion and Long term Intervention
Annies next challenge involves experiencing camp for a vacation. The same principles of intervention, training and team work will be applied to make it successful. Annie has taught all of us the importance of evaluating behavior, looking at environments, teaching skills and that listening to an individuals needs is the key to success. Her quality of life has greatly improved. Previous behavior described in the beginning of this process are rarely present. With each change and transition she shows us all her strengths and reminds us that challenging behaviors can be overcome.
Griffiths, D. (1996). Brief behavioral consultation. Report submitted as part of assessment for Anne Marie Lefebvre.
Griffiths, D., Gardner, W, & Nugent, J. (1998). Behavioral supports: Individual centered intervention, a multimodal functional approach. Kingston, NY NADD Press
For further information contact:
Katharine Moxness, M.A.
Le Centre de Readaptation de LSouest de LIle
7100 Boul Champlain
Verdun, Quebec, Canada H4H lA