Quality of Life of an Adolescent Boy with Autism and Intellectual Impairment: A Unique Home Care Environment

Marie Hubel, Karin Linder and Bengt Sivberg

Abstract

Individuals with the diagnosis of autism need well-functioning home environment to make progress and achieve an acceptable level of quality of life (QoL). Long-term mapping of the daily life of individual persons with disabilities with the purpose of understanding their living situation is rare. The present study deals with the QoL of an adolescent boy with autism and intellectual impairment and living in an apartment of his own together with four caregivers, during a period of three and a half years. This single case study reports the qualitative analysis of the caregivers' open diary and repeated interviews capturing the boy's daily life and explores the staff's experiences of the boy's living situation. The results describe how important aspects for the QoL such as communication, activities, mood and regulation, were influenced by the boy's home care environment. The staff paid most attention to the boy's mood and meal-related situations and seemed to be unaware of the importance of improving communication. Findings in the diary and the interviews indicate that the boy seemed to regress in important skills and abilities despite the efforts of the staff.

Introduction

Knowledge and information about everyday behaviour and quality of life (QoL) among children and young persons with autism spectrum disorders (ASD) (Ruble & Scott, 2002; Wellman, Baron- Cohen, Caswell, Gomaz, Swettenham, Toye et al, 2002) related to their improvement and well-being is rare (Kristiansen, 2000). This study focuses on the QoL of an adolescent boy with a diagnosis of autism and intellectual impairment. Few studies have been performed on a single young person's QoL since it is difficult to carry through such as study on a person with autism and preverbal language. The approach here was to investigate the boy's QoL using caregivers' daily notes in a diary and interviews. Diaries are one of the most commonly used forms of documentation for transferring information between caregivers, but its content is rarely researched.

Of the 0.5 -- 1.0% diagnosed individuals with ASD among school-age children in the western world (Gillberg, 2001) 80% show IQ below 70, and 50% of all children with autism also have a non-usable language (Gillberg, 1998). ASD are described as triadic, involving disturbances and limitations in social interaction, communication and imagination (Wing & Gould, 1979). These behaviour problems affect the daily life of the individual with autism and relationships with others (Schopler & Mesibov, 1984). The disturbances call for strong continuity in the children's life. Suitable care, appropriate housing and a supportive learning milieu adapted to the unique child are of great importance for progress and for reaching an acceptable level of QoL (Schopler & Hennike, 1990; Van Bourgondien & Reichle, 1997; Hattersley & Champion, 2000).

During the last two decades QoL has become an important aspect of research concerning community-based care of individuals with mental illness and disability. (Bengtsson-Tops, 2001; Perry & Felce, 2003). There is no general consensus about the meaning of QoL. However there is agreement that QoL contains important subjective concepts such as satisfaction and standard of living (Lauer, 1999). Bigelow, Gareau and Young's (1990) definition of QoL is an adaptive functioning model focused on the individual's capacity to participate and perform in social roles by fulfilling needs and meeting demands. Needs are met through opportunities presented by the social environment. QoL in this study is understood in terms of well-being (Benner & Wrubel, 1989), covering several aspects of daily life such as housing, access to a daily structure both at home and in school, communication possibilities, and leisure activities. The QoL of persons with autism, especially if the understanding of language is limited or absent, is difficult to study in a direct way. There is no general consensus regarding the concept of QoL and that fact can affect the assessment of QoL (Lauer, 1999). A qualitative approach for investigating QoL, as in this study, can therefore be helpful since this method does not preclude the presence of previously established domains of QoL (Hansson, 1999).

The Study

Aim

The aim was to investigate the quality of life of an adolescent boy with autism and intellectual impairment using the caregivers' diary notes during 3.5 years and personal interviews. The quality of life was studied through the perspective of his home care environmnet.

Living Situation

The present study focuses on the boy's QoL mainly through his home care environment, while school and external activities are highlighted in the background. The municipal authorities failed to arrange any suitable accommodation together with other children of the boy's age, and made its placement decision on the basis of his unstable family situation, as the parents no longer lived together, there were many siblings with different kinds of problems and a lack of home-based resources. The boy moved into an apartment of his own when he was 13.5 years old, assisted by his caregivers. He was diagnosed according to both the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) (APA, 2000) and Wechsler's Intelligence Scale for Children (WISC) (Wechsler, 1993). His problems included an inability to relate to people, lack of speech (few words) and difficulties in performing activities of daily living (ADL). To obtain a clear picture of his functional skills he was also tested by the Adolescent and Adult Psychoeducational Profile (AAPEP) test (Mesibov, Schopler, Schaffer & Landrus, 1998).

Caregivers and Home Environment

The caregivers (also termed staff here) consisted of a team of four members, but the single member cared for the boy alone with him in his apartment. They were aged between 25 and 30 and two were men. Usually they started their job in the early afternoon and received the boy when he arrived about 3 pm in a taxi from his school. The boy had a need for rest and a small meal when he arrived, and after that he was ready for outdoor activity. After that they prepared supper together. In the evening the boy watched some videos or television programmes together with the caregiver. The boy was very active and it was hard for him to relax and start his personal ADL before going to bed. Often he did not fall asleep before midnight. The caregiver, who slept in a separate room, could now and then hear him walking in the apartment (three rooms and a kitchen) and visiting the bathroom. In the morning he did his personal ADL again, had breakfast and prepared for departure to school by taxi about 8 am. Before that he carefully studied his daily programme on a pictogram in the hall. He stayed in school for about seven hours including travel time. After his department the caregiver was occupied with housekeeping and planning activities until early afternoon, when a new caregiver arrived for the next 24 hours. During the weekends the staff had even longer periods of 36 hours with the boy. All caregivers had an education of a high school level together with courses on care of a basic level.

Home Care Programme

A number of autism-specific community-based residential programmes have been developed to achieve an appropriate physical and educational environment. These programmes usually have common goals including creating a homelike environment and providing a treatment programme based on individual needs and skills aiming to maximise QoL (Wall, 1990; Perel, 1992).

The boy's housing programme was based on a special pedagogical programme, the Treatment and Education of Autism and Communication Handicapped Children (TEACCH) (Schopler, 1997). The TEACCH is primarily a treatment philosophy inspiring the development of treatment programs as in this case. The intention was to work close to the goals of TEACCH philosophy i.e. help the child to become independent by working with the child's resources and stimulating special interest during communication by emphasising clear instruction and structure (Van Bourgondien & Schopler, 1990). The main focus in the work with the boy was to develop his pre-verbal language using correct signs in his communication and to develop functional abilities such as independent eating, washing, dressing and undressing and toilet training. The boy needed extensive assistance from the staff during the morning routines. They prepared his breakfast, structured his eating and accompanied him to the taxi. After school the boy took part in the cocking at supper. Pictograms and pecs were used, for example a schedule available near the shower cabin, showing different steps to be followed during the shower. During the first six months the staff received work-related supervision from a therapist trained in the TEACCH pedagogy, in order to get relevant guidance and an opportunity to reflect on their daily work. Then there was a conflict between the staff and the therapist concerning how to close to TEACCH they should work and the supervision ended. The home programme was a complement to the school training programme, also inspired by the TEACCH approach. Communication between the home team and the school teachers was sparse, mainly through a school-based notebook, where the majority of the notes concerned practical issues such as sending an extra pair of trousers with the boy the next day.

Data collection methods and analysis

Data was collected from the staff's daily notes in a common diary covering the period of December 29, 1998, to May 26, 2002 (3.5 years, 1241 days). To ensure practice as well as to obtain a reliable picture of the boy's QoL, an open diary approach was selected. The staff had no instructions on what to write in the unstructured diary, which allows more data depth and the expression of spontaneous views (Burnes & Grove, 2001). To strengthen the claim to make a connection between what the staff wrote in the diary and their actions in the daily care of the boy, semi-structured interviews were conducted with the staff on two different occasions. The first set of personal interviews (third author, BS) was carried out a few months after the boy moved into his apartment and the follow-up interviews (first author, MH) three years later in order to capture changes over time. A broad topic and open-ended questions about the boy's living situation were used in the interview guide. During the interviews, lasting for approximately one and a half-hours, probes were used and the interviews were audio taped and transcribed, then cross-checked using the tapes to ensure accuracy.

The analysis of the diary and interviews was inspired by Burnard's (1991) methods of qualitative content analysis. This method initially dealt with the objective, systematic description of the manifest continent of a text, but over time the method has expanded to include also interpretation of latent content (Graneheim & Lundman, 2004). Content analysis can be used both manifestly and latently, varying in depth and level of abstraction by manifest frequencies of codes and illuminating the latent meaning of the text (Burnard, 1991). Manifest content analysis is about the surface and visible components in the text, i.e what the text explicitly says and latent analysis is concerned with the underlying meaning, by interpretation i.e what the text talks about (Downe- Wamboldt, 1992). The interpretation of both the diary notes and the interviews began with repeated reading to obtain an overall picture of the boy's daily living situation. The first step in the manifest content analysis of the data from the diary was to plot data for each day during the data sampling period. The notes had different characteristics, such as descriptive notes on situations and behaviour as well as more evaluative notes. The inductive process of manifest content analysis resulted in 76 codes covering and identifying all the content of the boy's daily life by means of events, situations and reflections. The codes were condensed and merged into 22 subcategories, each including between 9 and 890 notes. The eight most frequent subcategories were interpreted and merged into two main categories: Psychological well-being and Physical well-being (Benner & Wrubel, 1989), both reflecting the boy's QoL.

The analysis of themes (interviews) and change concerning the subcategories (diary) was performed by qualitative interpreting and analysis of code frequencies, respectively. The latent content analysis started with an interpretative reading of the transcribed text from the interviews and the texts belonging to the different subcategories emerging from the diary in order to illuminate the meaning of the text by identifying general themes. Then the themes from the interviews and the subcategories were divided into separate groups by identifying and distinguishing the similarities and differences between themes, discussed with the co-authors during the work of interpretation. To stay close to the original meaning and context, the author referred to the diary transcripts and the original tape recordings. The final phase of the analysis was an interpretation of text (both interviews and diary) as a whole, where the naive understanding and structural understanding were brought together into a comprehensive understanding. In order to understand how the themes from the interviews and themes from the subcategories (extracted from the dairy) informed each other, an overarching analysis was carried out by linking these themes to each other. Finally, the findings were illustrated by quotations from the diary and the inter-views.

Ethical considerations

Children with the diagnosis of autism are members of a group with great difficulties in expressing their wishes and asserting their rights. The boy's level of functioning meant that he was not able to give his permission to participate. Thus the mother as sole guardian and the management of the Division of Social Work in the municipality were asked for oral and written informed consent. The staff were fully informed of the purpose of the study and their rights regarding participation and leaving the study. The study was approved by the Ethics Committee of Faculty of Medicine at Lund University (LU 386-02)

Findings

The boy's quality of life reflected in the diary

The qualitative analysis of staff's diary resulted in two main categories, Psychological well-being and Physical well-being involving subcategories interpreted as being an important part of the boy's QoL. In the diary the staff wrote to a large extent about the boy's psychological well-being, such as his mood and his physical well-being, in notes concerning meal-related situations and a variety of activities in which he was involved.

Figure 1

Fig 1 The main categories and subcategories emerging from the diary

Note. The total number of notes in the diary was 3502 and one or more notes (average 2.9) were made during the 1226 days (98.7% of all days included). The subcategories, Communication, Mood, Activities of daily living (ADL) and Sleep, were coded one by one and could consequently occur more than once a day. The remaining subcategories, Reciprocity, Mood changes, Leisure-time activities and Meal-related situations were counted once a day even if they occurred more than once a day. The subcategory Mood incorporates different states of mood such as Happiness, Grumbling and three different types of Violence, Aggression towards himself, Aggression towards others or objects and General aggressiveness.

Psychological well-being

Four of the most frequent subcategories, Communication, Reciprocity, Mood and Mood changes, were merged into the main category, Psychological well-being, as they reflect different aspects of psychological well-being as an observable dimension of QoL (Fig 1).

Communication: The boy's communication included non-verbal as well as verbal communication and was only coded when staff looked on it as intentional. The boy's verbal communication was limited to one-way communication, where a member of the staff talked or the boy called for attention in different ways by making sounds, shouts or singing without words. During the whole sampling period non-verbal communication represented three-quarters of the total coded communication, and normally involved the staff and the boy using sign language or gestures, sometimes as two-way communication. Besides noting how communication was performed, notes were also made concerning the quality of the staff's and the boy's understanding, and the quality of the boy's intention with his communication. Interpersonal understanding was when the staff perceived reciprocal interpersonal understanding between them and the boy. This interpersonal understanding occurred during less than half of all notes and only when the staff perceived that the boy had an obvious intention behind his communication connected to his own understanding, "talked a lot about going to mum when he found out we were actually going there" ... "sketched in blue, meaning we should buy face-lotion (blue) as we were going to the shop this afternoon... " Lack of understanding occurred when the staff member apprehended the boy's signs, but hesitated regarding the interpretation of the meaning, "sketched yellow all day, don't know what he meant". Sometimes the staff perceived that the boy was intentional, but full interpersonal understanding was missing, "talks only about roundabouts". Here, the staff understood that he had an interest in roundabouts, but they did not know whether the boy wanted to ride or sketch a roundabout.

Reciprocity: According to the diary, reciprocity (interplay) between the boy and the staff seldom occurred, but in those situations when it did, the boy took the initiative as often as the staff: "wants to have his back scratched" ... "wanted a hug". The boy then intentionally sought body contact, which led to social contact. However, on less than half of all the days when reciprocity occurred, the staff evaluated the reciprocity as joyful or humorous, and in a few cases the staff described how both reciprocity and interpersonal understanding occurred when the boy did something together with another person: "she asked if he wanted to sketch and he showed her what to do".

Mood: The boy was perceived as mainly pleased. Despite this the staff described him as grumbling in one half of the notes where the entire spectrum of the boy's moods was coded as Happiness, Grumbling and Aggressiveness and violence (890 times). Aggressiveness and violence was specified as aggression towards himself, towards others or objects, and as general aggressiveness. The most frequent type of violence from the boy was general aggressiveness (66 of 126 times) and aggression towards himself (35 of 126 times).

Mood changes: The boy's changes of mood and temper were reported in the diary as: "today K had a change of mood" ... "he seems to be moody today". The staff themselves noted that the boy had a change in his mood on 156 days, i.e. they used the term "change of mood" during a day. But when all notes concerning the boy's different moods, such as happy, sad, angry, were counted during the same day, it was found that changes in mood occurred on a further 680 days, i.e. approximately half of all the days according to the criterion that the staff recorded more than two notes on opposite moods during the same day. Those changes in mood were often initiated by the boy's violent behaviour, and large changes in mood from one extreme to the other occurred at least once a day on approximately 5% (61) of the 1226 days.

Physical well-being

Four of the most frequent subcategories, Activities of daily living (ADL), Leisure-time activities, Meal-related situations and Sleep, were merged into the main category, Physical well-being, reflecting different aspects of physical well-being as an observable dimension of QoL (Fig 1).

Activities of Daily Living (ADL): The boy's ability to run the household was evaluated almost twice as often as his ability to manage himself. The boy's activities of daily living (ADL) involved personal activities of daily living (P ADL), such as personal hygiene, and instrumental activities of daily living and (I ADL), such as activities in the household. In the notes the staff focused on three aspects of ADL: Results of activity, Reactions during activity and Functional independence, all related to the daily activity. Examples of these were: "doing the dishes went like clockwork", "tidying up was not popular, got really angry" and "he did it himself, I was not needed". Notes focusing on results of and reactions to the activity were written three times as often as notes focusing on the boy's independence.

Leisure-time Activities: The boy's different leisure-time activities described in the diary were of two types, independent and supported. Independent activities were characterised by spontaneous play or when the boy played by himself, listened to music or watched television. The boy's supported activities involved support in social or physical activities from another person during the activity. In social activity he was to a great extent a part of a social interplay. Even physical activities such as swimming or riding were usually performed and supported by others. The notes of social activities evaluated during the first two years represented roughly 50% of all notes on activities. The staff both noted and evaluated social activities to a much higher extent than physical activities or when he played spontaneously by himself alone. In social activities the boy was either active, when he participated in a natural way in the activity, or passive, when he was socially isolated despite being together with others. The notes about when he participated were almost five times as common as notes about passivity in activities. During the three and a half years of data sampling, new activities as fishing, visiting the church and trying to play an instrument were noted on three occasions.

Meal-related Situations: : The boy's eating frequency received a great deal of attention in the diary as his meal-related situations were evaluated as: the boy's eating frequency (502 notes), his eating behaviour (123), independent eating (9) and food preferences (36). Eating frequency involved notes about eating extremely large or small quantities, and at extremely rapid or slow speed. Notes on eating behaviour concerned the staff's remarks about the boy's ability to eat in a "proper" way. Food preferences concerned the boy's liking or disliking the dishes. Eating frequency was evaluated more than 55 times as often as independent eating.

Sleep: Besides the boy's deficits in regulation connected to meal-times, his sleeping habits were noted from different aspects. Most common were notes evaluating how the boy had slept, for instance, "has slept well". Notes on reasons why the boy had slept well or badly occurred almost to the same extent. Notes concerning sleep rhythm were less frequent, and where they existed they concerned the boy's difficulties falling asleep, waking up earlier than expected or waking up several times during the night.

Changes in the boy's QoL over time

The staff's diary notes showed that aspects important for the boy's QoL were affected over time. During the data-sampling period the frequency of the staff's notes changed in different aspects of some subcategories. In the following text, the sampling period of 3.5 years, is divided into the first period (covering the first two years) and the end of the period (covering the remaining one and a half years). This grouping alludes to previous findings (Hubel, Linder & Sivbergs, 2006) showing a division of the sampling period into these two periods, as regards evaluation of the staff's pedagogical work.

During the first two years the boy's verbal communication was more frequent than at the end when, according to the notes, he was not verbal at all. Also, notes about non-verbal communication were limited at the end of the period when one of the staff wrote, "Today I could not speak to X, it is more and more difficult." The staff perceived an interpersonal understanding, i.e. interpersonal understanding, during half of the notes concerning communication (132 times), and this perceived interpersonal understanding increased at the end of the period, when 70% of these notes occurred. At the same time more notes concerning the lack of feedback from the boy occurred. Notes concerning how the boy managed activities of daily living, and to what extent he was independent, were constant during the whole sample period, while notes on evaluated leisure-time activities decreased. At the end, the staff wrote in the dairy about the boy's lack of improvements as, "now he can not manage to tie his shoestrings." During the last period the staff noted the boy's reactions to a higher extent than they evaluated his independence when he performed his leisure-time activities. The boy's changes of mood and aggressiveness and violent behaviour decreased radically during the second year when notes on both evaluated leisure-time activities and ADL increased.

On more than half of all the days, the staff had evaluated one or more aspects of meal-related situations. At the end of the period the number of evaluated notes regarding eating frequency and eating behaviour doubled in comparison with the frequency of those notes during the first two years, while notes on independence at meals and food preferences decreased. Notes on sleep rhythm were most frequent during the first year, but nearly half of all notations concerning the causes of these regulation deficits were found at the end of the period.

The boy's quality of life reflected in the interviews

From the interviews there emerged three themes, Isolation, Dependence and Improvement, induced by deficits of communication between the staff and the boy, and affecting the boy's daily life and possibilities to achieve optimal well-being and QoL.

The interviews confirmed the findings from the diary, as the staff said that the boy not was developing as expected and stated that the boy had lost certain abilities, and had stagnated in others. The data showed also that difficulties in communication between the boy and the staff lead to misunderstanding affecting the boy's daily life negatively. The fact that the staff perceived him as unpredictable made him isolated and dependent. A few of the staff said that the boy had only developed "mechanically," and what he had learned one day he could not perform the next. Some of the caregivers believed that the boy knew the content of the activity but not its intention.

Isolation

All staff described how that the boy lived isolated from his surroundings, and with few natural personal contacts giving any opportunity to train skills. When the boy moved in, the staff was uncertain whether he had any need for or interest in interaction with other people. The staff felt that they first wanted to give priority to helping the boy to have confidence and a sense of security in the apartment. After a relatively short period in the new home they found that the boy expressed a greater interest in participation in social activities than they had planned for. They also felt that the boy's potential to develop new social skills, and to become more independent, was not supported enough.

When you think of him and know how happy he is it is a pity that he should be stuck in this apartment, for him to improve he needs to be around others to see and learn. (I-3); If he lived together with others like him, he would have learned more, he is good at imitating. (I-4).

Dependence

The staff described the boy as being dependent on them, and said that the reason for this was his poor relationships with his family and others, and that the boy's living situation involved close contact between the boy and them. A consequence of this was that the boy's functional independence and his power of initiative were limited. The activities were not developed in line with the boy's personal resources to have relationships. The fact that the boy had only one staff member for company made him extremely dependent on their ideas and planning for activities, particularly at weekends. The boy's home-made sign language tended to be permanent as the staff practised sign language with the boy to a lesser extent. The staff found it difficult to know how to improve the boy's independence "As soon as he calls for us we are there" (I-2). "He needs constant care, but not for someone to be around all the time"... he is so dependent on what we are doing" (I-3).

Improvement

The staff reflected on the boy's poor improvement in skills, which had not developed in the way they had expected, "I thought he would have learned it by now" (I-4). The entire staff felt that they worked intuitively with the boy, "It feels as if it's right to do this" (I-2). The staff said that the boy did not learn any new signs to communicate, nor did he develop his ability to express himself. The staff stated that the quality of communication had decreased, and that there were fewer opportunities for communication during the last part of the period.

He hasn't enough practice. (I-2); It feels like we ought to try getting him to communicate about daily procedures. (I-2); I don't need to use sign language, I can read his mind ... but if we made him use signs in specific situations he might had learned something from it. (I-1)

During the follow-up interviews the staff said, "We don't know what he thinks or if he understands verbal communication at all" (I-4). Despite that, they argued that they could understand the boy even though the communication had decreased at the end. The staff also expressed uncertainty regarding their understanding of the boy's will and intentions, "if he is really angry and cries I don't know if he is sad about something he wants or if it is because I didn't understand him or because he can not communicate" (I-2).

Discussion

The result indicates that a disabled individual's home care environment is of crucial importance for his or her QoL and well-being. The findings from the diary and the interviews reflect the boy's daily life and how his QoL was affected over time. Important aspects for QoL for individuals with intellectual disabilities, such as ability to communicate, develop skills, participate in activities in society and regulate different functions, not was developed and even stagnated in this boy. The interviews confirmed and strengthened the impressions gained from the diary notes indicating that the boy's QoL was strongly connected to his housing situation and was affected negatively. The staff described how the boy's isolated life made him increasingly dependent on them, and they tended to seek explanations for the boy's failure to improve. The boy's closed and constant contact with the staff in the apartment meant that he did not perform different activities in daily life properly or independently. For example, they said "we help him too much."

Despite the fact that the interviews indicated above all that communication to a great extent was fundamental and highly important for the boy's living situation and consequently affected his QoL, communication was not given enough attention in the diary. Instead the staff focused more on the boy's moods (Fig 1). However, the staff's notes may have reflected their own interest since their working situation to a high degree was directly dependent on the boy's mood. The fact that the communication decreased as time went by and that the boy's non-verbal language consisted of home-made signs hampered his abilities to communicate and socialise with anyone but the staff. This lack of improvement in interaction and communication and the rare occurrence of reciprocity may be associated with the boy's emotional development and the staff's failure to improve his development. As notes on communication occurred to a significantly lesser extent than notes on meal-related situations, these sparse notes on communication raised the question whether the staff maintained the boy's ability to communicate. The staff seemed, in contrast to Rutter (1985), not to support existing abilities by interventions to improve vocal speech. Moreover, the lack of some skills and the increased aggressiveness at the end of the period may be an expression of the staff's unawareness of the importance of improving communication. However, the fact that notes concerning interpersonal understanding increased at the end of the period indicated that they became aware over time of the many problems arising from their lack of understanding of the importance of communication (Wall, 1990; Gray, 2002). Thus, notes on the staff's probably increased understanding are in contrast to the decreased number of notes on feedback from the boy during the same period. This finding may be grounded in the staff's view that communication was unnecessary when they intuitively understood the boy's signs. This attitude towards limiting unnecessary communication is not in line with Roos and Greer (2003), who emphasised the importance of communicating in simple and daily life situations, as the longer a child remains uncommunicative, the more deeply the child tends to withdraw and become self-stimulatory. Potter and Whittaker (2001) argued that factors in the environment, rather than in the child, are influential in affecting the frequency and quality of the individual's spontaneous communication. In the present study the result indicated that interplay was inhibited by the staff's incapacity to make use of the everyday situation to establish contact with the boy and teach him to expresses his wishes by stimulating him to communicate. The staff's contradictory opinions about communication were mainly seen in the later period when they said that they knew the boy and his wishes and that they could "read" him without communication, which was the reason why they did not need to speak or sign, but worked intuitively. Also the fact that the staff hesitated about what the boy really could manage to perform, and their ambivalence about his functional level may be an explanation for their difficulties in developing his communications. It is of crucial importance that caregivers acquire knowledge about the individual's level of communication and how to work pedagogically with the communication skills (Potter & Whittaker, 2001). The staff here did not have this knowledge. A pedagogical plan for working with the boy's communication skills was not prepared before he moved in. They had to find out by themselves how to act. It is obvious that the lack of professional consult influenced the boy's care. In particular, the fact that the staff worked alone without professional training and feedback from colleagues or a supervisor seemed to contribute to the staff's lack of insight concerning how to deal with the boy's needs in this unique care environment.

The staff's notes and statements also indicated that the environment did not correspond with the boy's needs for interacting with other people. In contrast to Kaiser (1988), who emphasised the importance of leisure-time and its meaning for children with autism, the boy's leisure time to a high extent contained passive play. The need to develop opportunities for group interactions with typically developing peers was not satisfactory in his care environment. The fact that this exposure did not appear to be happening further contributed to his isolation and underlines that the staff did not have the insight or ambition to initiate active interventions during leisure time. Several previous studies have found that children involved in home-based activities and treatments implemented by caregivers show significant positive changes in cognitive and developmental skills, such as improvement in reciprocity, emotional functions and areas of communication (Sheinkopf & Siegel, 1998; Ozonoff & Cathcart, 1998; Luiselli, Blew; Keane, Thibadeau & Holzman, 2000). The notes indicated that structured activity was positively related to the absence of aggressiveness as the boy's violent behaviour decreased during the second year (when notes on activity increased). The boy's mood became more unstable at the end of the period as his aggressive behaviour showed extreme fluctuations, and changes in mood increased. Despite these observations and the large extent of notes concerning the boy's mood, reflections or common strategies to manage his behaviour were not identified in the diary. One reason for the staff's failure to elaborate plans for handling these problems affecting the boy's QoL could be their poor reflection on the care. According to the diary, the staff did not work with the boy's problems with regulation of sleep and eating, nor did they pay sufficient attention to these. The interviews confirmed that the staff, despite the use of a daily diary, did not talk about or have insight into each other's way of working. The also failed to connect the boy's problems to their training of him. Without this agreement the staff's work became unstructured and lacked the important continuity. Notes on training and evaluation in connection with functional development became sparse in the diary, and the notes mainly focused on results of activities and the boy's emotional reactions, instead of how he was struggling to become independent. Both the few notes on evaluation of the boy's independence and the few new challenges indicate that none of the staff understood how to take the main responsibility for the boy's development and QoL.

A longitudinal diary may be an indicator of the quality of life. It might be objected that the findings were limited to the unique situation of this case. However, results of single case studies may shed light on similar situations. The staff's diary consequently gives an apprehension of the boy's living situation and QoL as it reflects the boy's daily life and his reactions in different situations. A diary analysis is a suitable method for exploring changes over time and gathering information covering a long period, as time sequences became more visible (Burns & Grove, 2001). It could be claimed that a diary is not a direct way of observing daily life and that the notes did not reflect what actually happened. However, the fact that different codes were noted in separate periods indicates that noted situations really happened and were not an expression of the staff's periodical inclination to write at certain times. However, despite the fact that a daily log book is recommended to ensure continuity of practice among staff, this study shows that this is not the case. Rather, the findings showed that more attention has to be paid to actual actions of staff to further the perspective of the individual, in order to determine the QoL of people with disabilities like autism. As optimal housing situations demand an appropriate care environment with residential programmes specially designed for individuals with autism (Schopler & Hennike, 1990; Van Bourgondien & Reichle, 1997) continuing evaluation of different settings is important (Luce, Christian, Anderson, Troy & Larsson 1992) and can guide municipal authorities in their choice of accommodation. An evaluation serves to reinforce the importance of considering the pedagogical environment as a contributor to QoL and well-being (Rivers & Stoneman, 2003).

Conclusion

Some conclusions can be drawn from the findings:

The findings did not correspond with the outcome literature showing possibilities for individuals with ASD to develop abilities during adolescence, as the study indicated that this housing alternative did not achieve improvement of the boy's QoL during the period of investigation.

Common strategies to improve communication and initiate active interventions during leisure times are essential to increase QoL.

Developing opportunities for group interactions with typically developing peers or any other group interactions is essential to reduce isolation and improve the QoL of individuals with ASD living in similar environments.

More structure and less intuitive and opportunistic work could improve QoL for those individuals.

Supervision of staff is essential to improve interplay between staff and care user.

Carefully elaborated routines could support the QoL of care user's needs.

If the home care environment not are sufficiently enabling, the communication and QoL could be affected negatively

References

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International Journal of Disability, Community & Rehabilitation
Volume 5, No. 1
www.ijdcr.ca
ISSN 1703-3381