Exceptional Children http://ecx.sagepub.com/ The Quality of Life of Siblings of Children with Autism Spectrum Disorder Tinneke Moyson and Herbert Roeyers Exceptional Children 2011 78: 41 DOI: 10.1177/001440291107800103 The online version of this article can be found at: http://ecx.sagepub.com/content/78/1/41 Published by: http://www.sagepublications.com On behalf of: Council for Exceptional Children Additional services and information for Exceptional Children can be found at: Email Alerts: http://ecx.sagepub.com/cgi/alerts Subscriptions: http://ecx.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav >> Version of Record - Oct 1, 2011 What is This? Downloaded from ecx.sagepub.com by guest on August 22, 2014 Exceptional Children Vol. 78, No. 1, pp. 41-55. ©2011 Council for Exceptional Children. The Quality of Life of Siblings of Children With Autism Spectrum Disorder TINNEKE MOYSON HERBERT ROEYERS Ghent University, Belgium ABSTRACT: This study investigated how siblings of children with autism spectrum disorder (ASD) describe and define their quality of life. Using a qualitative research design, the authors collected data through a 4-stage process which included in-depth interviews of 17 children ages 6 to 14 and focus groups. All of the children with ASD were male and between the ages of 5 and 16 with mild to moderate impairments; all of the participating families lived in a Dutch-speaking region of Belgium. Analyzing data according to the principles of grounded theory resulted in the identification of 9 domains of sibling quality of life (SibQol). The apparent invisibility of ASD emerged as an important theme. Results indicate that siblings of children with ASD can define their quality of life, that unique characteristics of ASD give the siblings’ experience a highly personal interpretation, and that the SibQol concept can be used to support siblings of children with ASD. utism spectrum disorder (ASD) is characterized by impairments in social interactions, impairments in verbal and nonverbal communication, and restricted and repetitive patterns of behavior (American Psychiatric Association, 2000). These typical impairments and the complexity and unpredictability of ASD place the family at greater risk for stress and psychological difficulties (Macks & Reeve, 2007). Parents of children with ASD not only report increased levels of stress and impaired family functioning but also describe parenting more often as an emotionally burdensome experience (Hastings, 2007; Petalas, Hast- A ings, Nash, Lloyd, & Dowey, 2009; Rao & Beidel, 2009). Over at least the past 5 decades researchers have tried to describe, to define, and to explain how siblings adjust to a brother’s or sister’s disability (Benson & Karlof, 2008; Kaminsky & Dewey, 2002; Rivers & Stoneman, 2008; Verté, Roeyers, & Buysse, 2003). Because of the unique characteristics of ASD one might assume that there is a difference between the effects of ASD and other disabilities on the sibling relationship and on the social, behavioral, and psychological adjustment of these siblings. However, findings regarding the adjustment of siblings of children with ASD, when compared with the adjustment 41 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 of siblings of children with another type of disability, have been mixed and inconsistent. Kaminsky and Dewey (2001) found that siblings of children with ASD reported lower levels of intimacy, prosocial behavior, and nurturance by their brother or sister with ASD compared to siblings of children with Down’s syndrome and to typically developing children. Macks and Reeve (2007) suggested that demographic characteristics such as sex, family size, socioeconomic status, and birth order were more likely to impact the sibling of a child with ASD than siblings of typically developing children. On the other hand, Hastings (2007) and Pilowsky, Yirmiya, Doppelt, GrossTur, and Shalev (2004) failed to find significant differences in the behavioral, social, and emotional adjustment of siblings of children with ASD and siblings of children with other diagnoses. There are at least three different explanations for these mixed results. First, studies on siblings’ adjustment reflect methodological differences, the use of different measurement tools, variance of perspectives, and the use of different comparison groups (Hastings, 2003a; Macks & Reeve, 2007). Because there is no single generally accepted instrument to measure siblings’ adjustment, researchers have to choose an approach from existing measurements and methods. Each method conceivably measures a different aspect of siblings’ adjustment, so it is difficult to compare the results of separate studies. Moreover, research has shown that the perspective of the participants in sibling studies is strongly colored by their background (Cuskelly & Gunn, 2006; Lobato & Kao, 2005). Consequently this perspective needs to be taken into account when comparing different studies. Studies on siblings’ adjustment reflect methodological differences, the use of different measurement tools, variance of perspectives, and the use of different comparison groups. A second explanation can be found in the definition of adjustment. The principal goal of the majority of sibling research is to examine sibling adjustment. However, this concept is defined differently in various studies, with some studies focusing on only a particular part of this concept. Whereas some studies address the sibling relationship and the mutual interactions between siblings and their brother or sister with ASD (Kaminsky & Dewey, 2001), other researchers try to describe the psychosocial and emotional adjustment of siblings (Benson & Karlof, 2008; Cuskelly & Gunn, 2006; Kaminsky & Dewey, 2002; Pilowsky et al., 2004; Rao & Beidel, 2009). Behavioral adjustment is another aspect often studied; within this area there is disparity as well, with some researchers equating behavioral adjustment with psychological adjustment (Hastings, 2003b). The lack of an unambiguous definition of adjustment highlights the fact that, to date, there is no concept that can completely describe the experience of being a sibling of a child with ASD. Third, the influence of children with ASD on their siblings is modified by several factors relating to the characteristics and dynamics of the individual family members and of the family as a whole, such as gender, age, birth order, family size, socioeconomic status, parental response to the child, temperament, and coping styles (Giallo & Gavidia-Payne, 2006; Macks & Reeve, 2007; Mascha & Boucher, 2006; Rivers & Stoneman, 2008; Ross & Cuskelly, 2006). Assuming the influence of all these variables, different studies can present only mixed and conflicting results. Further, because most of these variables cannot be changed, it may be more useful to instead study and work directly with siblings of children with ASD to allow them to explore and if necessary modify their thoughts and feelings about their brother or sister with ASD (Mascha & Boucher, 2006). Meadan, Stoner, and Angell (2010) argued that sibling research should focus on “hearing the voices of the siblings by asking them directly for their perspectives, by attempting to understand their adjustment, and by having them identify areas of needed support” (p. 98). Understanding siblings’ experiences and perceived needs is necessary for the development of effective sibling support programs (Barr, McLeod, & Daniel, 2008). Qualitative research may provide a deeper and more comprehensive understanding of the experiences of siblings of children with ASD. Recent 42 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 qualitative studies on the experience of siblings of children with ASD not only confirm that these children experience stressful life conditions but also reveal some previously hidden themes, such as being afraid of and being a victim of violent behavior, and acceptance of the child with ASD (Benderix, Nordstrom, & Sivberg, 2006; Mascha & Boucher, 2006; Petalas, Hastings, Nash, Dowey, & Reilly, 2009). Meadan and colleagues (2010) stated that understanding the experiences of siblings of children with ASD and developing a sibling support system based on that insight might affect and enhance the quality of life for all family members of children with ASD. This concept of quality of life (QOL) and, more specifically, the concept of family quality of life (FQOL) has recently become important in the area of special education (Jokinen & Brown, 2005; Schalock, 2004). FQOL intends to describe the QOL of all family members and the QOL of the family system and the members’ influence on each other (Brown, Anand, Fung, Isaacs, & Baum, 2003; Turnbull, Brown, & Turnbull, 2004). However, for the most part, researchers have only asked parents to describe their FQOL. The opinion of the siblings has been subsumed under the opinion of the parents, even though research has shown a discordance between parents’ and siblings’ QOL reports (Houtzager, Grootenhuis, Caron, & Last, 2005). Children with ASD present a wide range of abilities and behavioral profiles. The extant literature on siblings’ adjustment has mainly examined siblings of children across this autism spectrum, providing mixed results because of the different clinical profiles. Increasing numbers of children meet the current diagnostic criteria for ASD and have IQs in the average or above-average range; these children and their families—including their siblings—have unique service and intervention needs. In this study we chose to focus on siblings of children with ASD without an intellectual disability. The sibling quality-of-life concept (SibQol) we introduce assists in describing the dynamic relationship between siblings and their brother or sister with ASD and might be used to develop support programs for siblings of children with ASD. METHOD P A R T I C I PA N T S In addition to focusing on siblings of children with ASD without intellectual disability, our inclusion criteria were the age of the participant (6–14 years old) and the age of the sibling with ASD (3–18 years old). We recruited participants through a parents’ association, family support services, rehabilitation centers, and special schools. Based upon the principles of convenience sampling, we included all the siblings who met the criteria. This resulted in 17 participants, belonging to 15 Caucasian families. Of the children with ASD, (a) all were male; (b) their ages ranged from 5 to 16 years, with a mean age of 9.65 (SD = 3.55); (c) they had received a diagnosis of autism from a multidisciplinary diagnostic clinic; (d) they all resided at home; and (e) three of them attended a special school for children with ASD. According to their mothers’ reports, the children with ASD had either mild (N = 9) or moderate (N = 6) impairments. Ten participants were female, and seven were male; their mean age was 10.41 years (SD = 2.26). With regard to other family characteristics, nine participants were older than their brother with ASD; 13 participants had no other siblings other than their brother with ASD; one participant also had one other typically developing brother or sister; and three participants had three other typically developing siblings. INSTRUMENT We were particularly interested in the sibling experience from the participants’ own frame of reference. The choice of a qualitative research design was obvious; more specifically, we chose to use indepth phenomenologically based interviews (Seidman, 2006). This method combines life history and in-depth interviews in which the interviewer builds upon and explores the participants’ responses to open-ended questions. The model involves conducting three separate interviews with each participant. In the first interview, we asked the siblings to say as much as possible about themselves up to the present time. The second interview concentrated on the experience of being a sibling and on quality of life. In the third and 43 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 TABLE 1 Phenomenological Interviews of Participants in the Study Interview Interview 1 Focus on the history of the sibling Questions Until today, what were the most important events in your life? (drawing timeline) Which things that are happening now in your life would you like to stay the same forever? Can you tell me when you first realized/felt/saw that your brother was different? Interview 2 Focus on the experience of being a sibling and on quality of life Drawing a thermometer measuring how you feel as a sibling, If I had a magic wand, what would you want me to change you/your brother/your parents/other people (relatives, friends, etc.) into, so you would rise on the thermometer? How would I have to change you/your brother/your parents/other people (relatives, friends, etc.) so you would fall on the thermometer? What would be different in your family/in your life/in your parent’s life if your brother didn’t have ASD? Would some things be better or worse? Interview 3 Focus on reflection on the meaning of being a sibling If other people ask you how it feels to be a sibling, what do you answer ? Are there some things we didn’t talk about that you would like to talk about? Sometimes things can change after having talked about it. Do you feel that you or some things at home have changed by the things we talked about? final interview, we asked participants to reflect on the meaning of being a sibling and on participating in the study. Table 1 provides the framework for the interviews for this study. PROCEDURE We obtained written consent from the parents and the participants prior to commencing the first interview. We provided all the families with information on the aims of the research and the potential topics to be discussed during the interviews via an information sheet, which included a child-friendly version linked to the consent form. D ATA A N A LY S I S We interviewed participants at their homes. Each interview lasted between 40 and 70 min and was digitally recorded. The records of the interviews were transcribed verbatim. Field notes provided details and descriptions of the interview, the participant, and his or her family members. The second and third interviews started with reading and discussing the transcript of the previous interview (member checking), to guarantee and improve the validity of the research. Following grounded theory data analysis procedures (Corbin & Strauss, 2008; Creswell, 44 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 2007), we used a four-stage data collection strategy. For Phase 1 data collection, we interviewed four participants three times each. The first author read the 12 transcripts twice line by line, noting comments in the margins. Following this, the first author and research assistants reread the transcripts and coded them by means of NVIVO 8, a computer-based qualitative data management program. This open coding phase resulted in a first list of codes and enabled us to identify salient themes, worthy of closer explanation, concerning the sibling experience and the influence of ASD on the sibling relationship. Phase 2 consisted of individual interviews with 10 participants. Because data saturation was achieved after the three interviews with the 10th sibling, we decided to stop the data collection. This second phase intended to extend the coding list (open coding) and later on to explicate the codes in more detail (axial coding). A series of intensive individual (by the first author) and team approaches (by research assistants) to data analysis were conducted with NVIVO 8. We critically evaluated each coded quotation to ensure that the selected code indeed reflected the meaning behind the quotation. If necessary, we re-coded the quotation or we formulated new codes. Finally, using a number of analytic strategies (i.e., making comparisons, asking questions, turning some concepts inside-out and looking for negative cases) there was an interaction between the researchers and the data, which assisted to probe the data and to understand possible meaning. This continuous process of open and axial coding and constant comparison of the codes enabled us to identify themes and patterns related to the central phenomenon, that is, the siblings’ experience (selective coding; Corbin & Strauss, 2008; Miles & Huberman, 1994). For Phase 3’s member-check interviews with five participants, we randomly chose two participants from the 14 we had interviewed in Phase 2 and included the three remaining participants we had not yet interviewed. The purpose of this phase was twofold. First, we wanted to test the themes and the patterns identified in Phase 2. Based upon the information gathered in this phase, we could refine our first results. The second purpose of this phase was to explore if and how siblings could define their quality of life. To achieve this we first explained the general concept of quality of life, then described the 10 quality of life domains generally accepted as important for children: physical well-being, psychological wellbeing, moods and emotions, self-perception, parent relation and home life, autonomy, financial resources, peers and social support, school environment, and bullying. We asked the participants to reflect on these domains and to tell us if these were also important for them as a sibling of a child with ASD. We also asked them if they could think of other important domains of quality of life. Phase 4 included two small focus groups (two times with three different participants each). The function of the focus groups was to clarify the apparent invisibility of autism spectrum disorder. ADEQUACY OF THE RESEARCH PROCESS We ensured rigor by incorporating procedures to address credibility, transferability, and dependability (Corbin & Strauss, 2008). We used two techniques for addressing credibility: triangulation of data and member checking. We triangulated data by using trained research assistants to collect and analyze data and by using different data collection methods (i.e., interviews and focus groups). Member checking was used both at the beginning of the second and third interview with each sibling and at the end of each focus group. In addition, we conducted five individual member-check interviews. Transferability was enhanced by including participants from different geographical regions of the country and by ensuring that participants reflected a variety of characteristics (e.g., age, gender, birth order); both expanded the diversity of the sample. Using multiple researchers and research assistants helped us to ensure dependability. The research team regularly discussed their agreements and disagreements in working to achieve consensus on themes and patterns. RESULTS Nine domains of quality of life of siblings emerged from the analysis process: 45 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 1. Forbearance ignorance. Of course, this is not always easy, especially not in situations where characteristics typical of ASD are visible. 2. Mutual understanding 3. Joint activities Other children ask me: What is wrong with your brother? But my mother does not allow me to say, because one time he was jumping rope, but he swung too slowly and when he jumped, he was jumping wrong and his head was in a strange position, and everybody started laughing at him. (Peter, 7 years) 4. Private time 5. Trust in well-being 6. Acceptance 7. Exchanging experiences 8. Social support 9. Dealing with the outside world These nine domains represent aspects of the sibling experience important for a good quality of life as the sibling of a child with ASD. In addition to identifying these domains, however, during the process of this study the theme of the invisibility of ASD emerged as a connecting thread throughout the participants’ narratives. Although the invisibility, or apparent absence, of ASD cannot be described as a QOL domain, the stories of our participants illustrate how siblings’ well-being and quality of life is influenced by this invisibility. THE INVISIBILITY OF ASD Many children with ASD have a “normal” physical appearance. In addition, some typical ASD behaviors are not only not considered problematic but also seen as positive—which can create the impression that the individual can “control” the ASD, or even that ASD is not always present. This invisibility has both advantages and disadvantages. Sometimes siblings welcome this kind of invisibility because other people will not stare at or negatively comment on the child with ASD. On the other hand, the participants in our study acknowledged that other people were not always willing to believe that their brother had a disability. Our granny is always saying: “he’s a normal kid—I used to be like that too when I was young,” but of course it is different: He has autism and she doesn’t! But our granny does not know what autism is. In fact she doesn’t want him to have autism; her grandson has to be perfect. (Rebecca, 14 years) Some families discourage revealing that a family member has ASD, fearing prejudice or I want to maintain the greatest secrecy about his ASD, because otherwise my friends will laugh. Once, at Peter’s birthday party, Roger almost uncovered my secret, because my brother was also at this party and he started to talk to Roger. I really thought he would find out, but fortunately he didn’t and I quickly started to talk about something else! (John, 8 years) Because children with ASD often behave like children without ASD, to their siblings it can seem as though they are only “bothered” by ASD once in a while. I don’t always like my brother, only when he is not having his autism. Then I say phew, he is normal today, so we can have a good time. But then I don’t like him because of his ASD, but because he has no ASD! (Eric, 10 years) When their brother or sister “has no ASD,” siblings feel that they can interact with their brothers or sisters as if they too were typically developing children. When we were younger, we often went to the beach, playing with the ball or building sandcastles. Then we were just siblings, you understand? Actually, we had a lot of such times without his ASD. (Catherina, 13 years) The siblings in our study also observed that their brothers with ASD behaved better around other people in the neighborhood than at home. Sometimes people say it isn’t so bad to have Ivan as a brother, but they should see how he treats me. Because I’m his brother, he can curse at me. He will never curse at other people! And he’s not only cursing at me, he hurts me or he gets angry with me! He can control himself if other people are around! (Eric, 10 years) 46 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 Because of this “having ASD on occasion,” some siblings may think that their brother or sister does not always have ASD and has a choice. This leads to siblings sometimes doubting the correctness of the diagnosis or wanting to have ASD too, especially if they perceive that their brother or sister benefits from having ASD. For my birthday I want a special costume, so I can dress up as someone who has ASD. Then I can watch much more television and I can eat only the things I want to eat. (Claire, 6 years.) In our study, participants who remembered the process of their brother being diagnosed with ASD—especially if this took a long time and if there were a lot of doubts—were more likely to doubt the diagnosis. There are some things I can’t understand. The doctor said that my brother has ADHD and ASD. But ADHD means being wild and fighting all the time and being rude and ASD means that you are quiet and that you are keeping in the background. How is it then possible to have both disorders together? (Luke, 11 years) Finally, because of the invisibility of ASD, the outside world cannot properly assess the impact of a child with ASD on the family as a whole and on the siblings in particular. You just can’t explain it to others. For example my brother likes to talk about computers and that sort of stuff—he knows a lot about it and other people only think he’s just a smart boy. But of course, they don’t realize he can’t stop talking about it and that he often repeats the same topics. Oh yes, it’s nice to listen to him for 15 minutes, but for us it’s all day long . . . every day. (Laura, 12 years) NINE DOMAINS OF SIBLING QUALIT Y OF LIFE Domain 1: Forbearance. The typical, sometimes bizarre, aggressive, or annoying behavior of a brother or sister with ASD can be hard to bear. Therefore, siblings look for ways to cope with this behavior—some more effective than others. The participants in our study generally would not let their brother push them around, although they realized that reacting might only worsen the situation. Sometimes, he can’t stop teasing me when we are sitting in the car; he is always sitting down next to me, and then he starts making his irritating sounds, or wiggling his legs and pushing me. . . . I know I’m not allowed to, but sometimes I just push back or pinch him. (Petra, 10 years) Other siblings thought it was better to ignore the behavior and to control oneself: Before I knew he has ASD, I always reacted to him, although I knew it made things worse. Now I try to ignore it, because there is no point to reacting. (Rebecca, 14 years) Being aware that their brother with ASD could not always control it, some participants excused the behavior: He can’t help it, can he, so there is no need to get angry at him, even when he really annoys you. (Monica, 9 years) Adjusting to difficult behaviors also can reduce conflicts, and after a while siblings get used to the behavior and some of them even learn to appreciate some aspects of ASD: Given these conflicting emotions, it is striking that some siblings, when comparing themselves with siblings of children with other disabilities, consider themselves lucky. Ivan knows a lot, almost everything about animals or astronomy. During dinner he keeps on telling about it; cannot be silent. So, I’ve learned a lot from him! (Eric, 10 years) It is much worse if your brother is in a wheelchair, because then, you really cannot do anything together. Needing a wheelchair or going to a special school means that you really have a disability. ASD is not really a disability, is it? Especially because you don’t have it every day. (Sophia, 11 years) Domain 2: Mutual Understanding. Understanding one other is essential to successful interactions between people. For the participants in this study it was important that their brothers with ASD were able to speak, so they could talk with each other and understand each other: 47 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 He can tell really funny things, and I like that. (Monica, 9 years) Following this same reasoning, participants regretted the fact that their brothers did not always want to talk: Although he can talk, it’s a pity he doesn’t like to talk. He doesn’t talk a lot. He only wants to be allowed to be silent all day. (Rebecca, 14 years) Moreover, the participants in our study recognized that their brothers with ASD could not understand emotions. They did not consistently feel understood and had not ever had the feeling that their brother was laughing with them. The final communication limitation in the sibling relationship is the fact that, generally, the child with ASD only wants to talk about his or her own areas of interest. It is hard that he always wants to talk about the same things: the dinosaurs, trains, the ancient Romans. (Sophia, 11 years) At a family party he once started to talk about embarrassing things and we couldn’t stop him! (Roy, 14 years) Domain 3: Joint Activities. The participants in our study welcomed the opportunity to do things with their brothers with ASD, particularly “normal” things. For these children, “normal” meant the things they would do if their brothers did not have ASD. To them, it was important that ASD did not hinder typical childhood activities. However, some activities will indeed be limited because of ASD. The participants in our study recognized that they could still do “normal” things, albeit sometimes a bit differently. When we play a game, he always makes his own rules. Then, playing together is successful. (Laura, 12 years) I always let him win, otherwise he gets angry. (Claire, 6 years) It is, however, impossible to adapt everything; siblings of children with ASD do realize and regret that some things simply cannot be done with their brother or sister. We can’t go on holiday to another place. My brother is used to going to that one particu- lar house at the seaside and changing this would upset him too much. I would rather like to go abroad or to the mountains, but with Thomas it isn’t possible. (Monica, 9 years) Domain 4: Private Time. Although it is important for siblings to do things with their brother or sister with ASD, participants also emphasized the need to not be a sibling for a while. They wanted “private time” to do things without their brothers and to do things one-on-one with their parents. Having a place of their own at home, having their own friends, or going to a different school than their brothers were all important for the siblings’ well-being. Private time proved to be helpful in more difficult situations. Next week Ivan is going to camp. I’m looking forward to doing all the things I can’t do when he’s at home, like reading a book peacefully, or playing on the computer—because when I start on the computer, he always interrupts me—or watching television peacefully, because Ivan always fidgets when he’s watching television. I also think we will go out for dinner, or maybe to the dinosaur museum. We can do these things with Ivan too, but then he claims all the attention or dominates the conversation. (Eric, 10 years) Domain 5: Trust in Well-Being. Sibling wellbeing is dependent on the well-being of the child with ASD. Participants were strongly concerned about the welfare of their brothers and were regularly haunted by worries: Will he or she have friends? Were those friends accepting him the way he is? Is he feeling sad because of the ASD? He is always looking for new friends who want to play with him, but a lot of children don’t want to be his friend because he is different. It’s so sad to hear that he has no one to play with at school. (Christina, 12 years) Participants also worried about the future, when their brothers would be grown up: Will he be able to work? Can he live on his own? It was also striking that participants expressed feeling sorry about the ASD, not only for themselves as a sibling but also for their brothers. Some participants even said that it would be better if they themselves also had ASD: 48 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 It would be much better if I had ASD too, because then I could understand and handle him better. (Monica, 9 years) Because of these strong concerns about the wellbeing of their brothers, participants were pleased with the help and the support their brothers received: You know, I’m glad he can go to that special school for children like him. The teachers there know exactly how to treat him. (Steve, 11 years) Domain 6: Acceptance. Learning to accept that their brothers had ASD and the consequences of this diagnosis for their own daily life appeared as an important theme in participants’ stories. When they realize that their brother or sister always will be different, siblings have no other choice than accepting ASD. This acceptance process can be conceptualized as three stages: in the first stage siblings swallow the message, in the second stage they are going along with it, and in the third stage siblings resign themselves to their special situation and even begin to consider it as “normal.” When I was told Don has ASD, I first felt displeased. I don’t know—it took a week or two to get used to it—so I felt displeased for one day I think. Perhaps displeased is kind of rude to say about Don, but in every way I needed to get used to it. (Roy, 14 years) We have to accept it, otherwise you can’t live with it. (Sophia, 11 years) You must accept it, because you can’t send him back, can you? (Monica, 9 years) My brother can’t get me mad anymore because now I’m used to the things he says to me. My parents told me he doesn’t mean what he’s saying and anyway it has improved. Where he first said: I hate you, he now only says: you’re a silly moo! (Rebecca, 14 years) However, accepting ASD also implies that there will be moments, days, or even weeks where this will seem very hard or even impossible. I regularly go to my bedroom, because I can’t bear it anymore, and then I just start to cry and cry and then I think: Why is my brother like that? It is so difficult, and then realizing that he will always be like that makes it even worse. . . . I often fall asleep on a wet pillow. (Guido, 11 years) Domain 7: Exchanging Experiences. It is important for siblings of children with ASD to meet others with the same experience. By listening to the stories of other siblings, by sharing experiences, by getting information about ASD, and also by having fun with each other, siblings can better understand their own story. It helps them to accept their situation and at the same time to put things into perspective. I like to go to the sibling group, because there I can enjoy myself, without children with ASD. (Monica, 9 years) Once I attended a meeting especially for siblings of children with ASD. We could ask questions or tell our own history. It was nice to meet other people experiencing the same things, or even worse. There was a sibling telling about her sister who smeared her feces all over the wall! So I considered myself fortunate with my situation! (Rebecca, 14 years) Domain 8: Social Support. Participants indicated that they also needed support and help. Children expect, first, that their parents will listen to them; although they acknowledge that their brother might need more attention, they expect their parents to treat all the children in the family equally: It would be easier for me if my parents gave me some more attention, because now they are always busy with Thomas. (Monica, 9 years) Many participants were aware that their parents had their own concerns, and often did not want to bother their parents with their worries. Some participants in our study considered having a typically developing brother or sister (in addition to the sibling with ASD) an additional resource. With this sibling they could do the things they could not do with their brother with ASD: It would definitely be better if I had another sibling—a brother or a sister, it doesn’t matter, but just being able to do the normal things! (Guido, 11 years) 49 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 On the other hand, not all siblings of children with ASD idealize the “normal” sibling relationship. At school nobody knows he has ASD. He can hide it and therefore nobody needs to know. (Sophia, 11 years) If I had a normal brother or sister too, I think things would be worse, because I would get along better with the normal one and Michael might feel excluded. After all, he can’t help it, and how would it be for him noticing that I preferred the other one? (Rebecca, 14 years) On the other hand, when the child with ASD displays typical behaviors, it can be very difficult for the sibling to answer the questions of the outside world—or not to react to comments and to keep the family’s secret. Other relatives can also be a support for siblings, particularly if they are willing to take care of the brother or sister with ASD, both to satisfy the need for private time and also to spend some oneon-one time with the child without ASD. However, sometimes other family members do not believe or cannot accept that the child has ASD. Another problem arises when family members do not realize the impact of the child with ASD on the family. Because of the invisibility of ASD, some family members might think that living with a child with ASD turns out better than expected, so they do not offer their support spontaneously. Similarly, parents and/or siblings would rather not ask for help, creating a cycle of not offering help because parents do not ask for it, probably because there is no need, therefore, there is no need to offer support. . . . Unfortunately, families with a child with ASD, and more specifically the siblings of the child with ASD, cannot expect support from their extended family. Finally, friends are also important for siblings, simply because friends can help them “forget” that they have a sibling with ASD. I’m allowed to go to my friends or my friends can come over here, and that’s important, because sometimes you just want to leave the quarrelling or your annoying brother. You want to be somewhere else, and then it’s good to have your friends. (Rebecca, 14 years) Domain 9: Dealing With the Outside World. Because of the invisibility of ASD, the outside world (i.e., friends, neighbors) often does not know (or is not allowed to know) that the child has ASD. Participants in our study appreciated the fact that the outside world was not always aware of their family situation. On the playground I hear the other children refer to my brother as just an annoying boy. Of course I know better, but I’m not allowed to explain. (Luke, 11 years) If the outside world knows about the ASD, however, this can provide another resource for siblings to get support or to be acknowledged. Sometimes our neighbor invites me to come to her house, where I can play with her daughter, because she knows I cannot really play with my brother Brian. (Claire, 6 years) This resource is dependent, of course, on the outside world understanding and accepting ASD as well. Siblings can face teasing and disbelief, and often have to defend themselves and their brother or sister. One day a friend came over to play with me on the computer, but once he saw my brother was at home too, my friend said that he had to go home. (Luke, 11 years) DISCUSSION The principal goal of this study was to investigate how siblings of children with ASD perceived their quality of life as a sibling. The participants in this study could indeed describe their experiences and reflect on their quality of life and how it might be improved. This is in line with other studies exploring the perceptions and experiences of siblings of children with ASD (Benderix et al., 2006; Mascha & Boucher, 2006; Petalas, Hastings, Nash, Dowey et al., 2009). The voice of siblings has been neglected for a long time; our study confirms the surplus value of listening to the siblings, even when they are rather young. 50 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 DEFINING SIBLING QUALIT Y OF LIFE Based upon the stories of the participants in our study, we were able to define nine domains of SibQol. These nine domains are partially consistent with the findings of other studies on the sibling experience (Benderix et al., 2006; Petalas, Hastings, Nash, Dowy et al., 2009). Previous research presented conflicting results about the detrimental and the beneficial effects of having a brother or sister with ASD; our study also shows that the positive and the negative experiences are inextricably linked to the sibling relationship. The value of the SibQol concept is that it takes this dynamic character into account. Despite the holistic nature of the sibling’s experience, it is much easier to address specific aspects (i.e., domains of quality of life) in isolation. The multidimensional characteristic of the QOL concept suggests that different domains can be viewed not only separately but also as part of a whole (Brown & Brown, 2003; Schalock, 2004; Turnbull et al., 2004). In their study on the perceptions and experiences of siblings of children with ASD, Petalas, Hastings, Nash, Dowey et al. (2009) and Benderix et al. (2006) identified collectively 12 main themes representing the sibling’s experience. Each of these is reflected in our SibQol concept, although the SibQol concept is much more comprehensive, capturing the sibling experience as a whole. Our study also shows that the positive and the negative experiences are inextricably linked to the sibling relationship. The nine domains discussed in this study can only be considered a preliminary definition of SibQol. Further research is needed to refine this concept, to define subdomains, and to describe indicators. The final definition of the SibQol concept should enhance development of sibling support programs. Although during the last 2 decades sibling research has emphasized the importance of sibling support (Evans, Jones, & Mansell, 2001; Lobato & Kao, 2005; Smith & Perry, 2004), due to the lack of insight into the sibling experience it has not been clear which needs these programs would support. The SibQol concept not only gives us more insight into the sibling experiences, but gives us a concrete basis from which to develop and implement sibling support and thus to improve the quality of life of siblings. “I N V I S I B L E ” D I S A B I L I T I E S This study also illustrates how the invisibility of ASD—the “normal” physical appearance and “normal” behavior—strongly influences the experience of siblings of children with ASD. This invisibility can cause siblings, and also the outside world, to have a lack of understanding and doubt about the diagnosis. On the other hand, this invisibility also brings relief because sometimes everything seems to be “normal.” Research on other invisible disabilities or diseases has shown that people often assume that because people with invisible disabilities may look fine on the outside, they must be exaggerating, making excuses, or lying (Connell & Connell, 2004). The results of our study confirm that sometimes other people cannot believe that the child has ASD, because he or she looks “normal” and behaves “normally.” This is similar to Skär’s (2010) findings on children’s conceptions of the word disabled: Children have positive attitudes towards people with disabilities, but they also associate disability primarily with some technical device (e.g., a wheelchair or crutches). Children respond to an obvious disability positively and to an invisible disability with prejudice, doubt, and incomprehension (Skär, 2010). Siblings can “prove” and explain ASD only if the child is exhibiting typical ASD behavior, which sometimes helps them to appreciate the child. Chambres, Auxiette, Vansingle, and Gil (2008) and Huws and Jones (2010) examined concepts of autism and attitudes towards people with ASD. Their results showed that when people do not know that a child has ASD, they judge typical ASD behaviors as more annoying. In contrast, when people are informed about ASD, they are more lenient. This also confirms the results of Peeters’s study (1997, as cited in Chambres et al., 2008), in which parents experi51 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014 enced daily comments suggesting that their children were poorly raised. Nevertheless, these results do not mean that it is better for parents and siblings to tell everybody about the presence of ASD. The word autism seems to lower people’s expectations of the child (Chambres et al., 2008; Connors & Stalker, 2007). Research has also shown that providing extra information about ASD is not in itself sufficient in restructuring attitudes towards people with ASD or perceptions about ASD. Direct contact and interactions between people with and without ASD over long periods has been shown to be the only effective way of developing positive concepts (Chambres et al., 2008). Our research also highlights the sibling’s dilemma about being allowed to tell others. One might think that the combination of telling, explaining, and doing as much as possible with the child with ASD is a good approach for friends and peers. However, research has shown that children hold less positive attitudes towards a child who exhibits typical ASD behaviors after being told about the presence of ASD (Swaim & Morgan, 2001, as cited in Huws & Jones, 2010). Maras (1993, as cited in Chambres et al., 2008) showed that, in school settings, children between 5 and 11 years old prefer to play with typically developing peers rather than their peers with disabilities. The dilemma about whether or not to keep silent about ASD causes a lot of stress and tension for siblings of children with ASD. If the outside world is not informed or is not allowed to be informed, the siblings cannot be acknowledged. Families need to continually reevaluate the advantages and disadvantages of reporting or not reporting; regardless of their decision, it is important that siblings feel supported during this process and when facing the consequences of the family’s decision. Our study, in line with other research studying the sibling relationships of children with ASD, indicates that siblings recognize the advantages of some typical ASD behaviors. Taunt & Hastings (2002, as cited in Petalas, Hastings, Nash, Dowey et al. 2009) found that siblings’ positive perceptions may serve a functional role in adapting to growing up with a brother or sister with ASD. Research on the acceptance process of siblings of children with ASD has described this reframing as a part of the acceptance process. When siblings realize that their brother or sister is different and always will be different, they not only adjust to it, but after a while experience their situation as normal and take advantage of it (Moyson & Roeyers, 2011). Siblings’ positive perceptions may serve a functional role in adapting to growing up with a brother or sister with ASD. Even when recognizing the advantages of the invisibility of ASD and the occasional benefits of certain typical ASD behaviors, one also must be aware of the disadvantages. Because of the invisibility of the disability, siblings are not always recognized as having a “special” brother or sister. Further, our study shows that siblings themselves are inclined to minimize the impact of ASD on their own lives. Because they have no other choice than to adjust to their specific situation, siblings not only learn to consider their situation as normal but also to refuse themselves permission to complain. L I M I TAT I O N S OF THE STUDY The participants in this study were young siblings; we could only approach and contact them through their parents. Consequently we are aware of the preselection of our participants and the impact of this on the results. In addition, all the siblings belonged to families with medium or high socioeconomic status. Other studies have shown the relationship between the socioeconomic status of the family and siblings’ adjustment (Giallo & Gavidia-Payne, 2006; Powell & Ogle, 1985). We are aware of the influence of this fact on the results of our study and it remains a challenge to expand this type of study to include families of lower socioeconomic status. By coincidence, all the siblings in this study had a brother with ASD. Given the male-to-female ratio of ASD reported in the literature, there are more boys than girls with ASD. Nevertheless it is not inconceivable that our results are influenced by this gender factor. It is also impor- 52 Fall 2011 Downloaded from ecx.sagepub.com by guest on August 22, 2014 tant to note that this study was carried out in Flanders (Dutch-speaking part of Belgium). We are aware of the potential differences with sibling responses in other cultures, and recommend future research on sibling quality of life in other countries. I M P L I C AT I O N S F O R R E S E A R C H PRACTICE AND Despite its limitations, the current study has important implications for further research and for the organization and development of family and sibling support services. In refining this first conceptualization of SibQol, it would be useful to repeat this study with siblings of children with another disability, such as intellectual or physical disabilities. Because of the specific characteristics of those disabilities we can assume that siblings will define their quality of life differently. For this reason, we also recommended extending this study to older siblings; individuals at different ages perceive different aspects as important in terms of a good quality of life. Once the concept of SibQol—an essential part of and an addition to the FQOL concept—is developed definitively, it can be used to help respond to the needs of siblings of children with disabilities. Further research needs to show whether and how this concept can be used by family support services. More research is also needed to explore the potential function of positive perceptions as a process variable affecting the siblings’ adjustment. 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A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11, 77–88. Turnbull, A. P., Brown, I., & Turnbull, R. (2004). Families and persons with mental retardation and quality of life: International perspectives. Washington, DC: American Association on Mental Retardation (AAMR). Verté, S., Roeyers, H., & Buysse, A. (2003). Behavioral problems, social competence and self-concept in siblings of children with autism. Child Care Health and Development, 29, 193–205. http://dx.doi.org/10.1046/j .1365-2214.2003.00331.x ABOUT THE AUTHORS TINNEKE MOYSON , PhD, Academic Staff Member; and HERBERT ROEYERS, Professor, Faculty of Psychology and Educational Sciences, Ghent University, Belgium. Correspondence concerning this article should be addressed to Tinneke Moyson, Department of Experimental Clinical and Health Psychology, Henri Dunantlaan 2, B-9000 Ghent, Belgium (e-mail: [email protected]). The authors wish to thank the participants for their heart-to-heart talks, and extend their thanks also to the parents for their hospitality. This research was supported by the Special Research Fund (BOF) of Ghent University, Belgium. The opinions expressed do not necessarily reflect the position or policy of the BOF, and no official endorsement should be inferred. Manuscript submitted August 2010; accepted March 2011. 55 Exceptional Children Downloaded from ecx.sagepub.com by guest on August 22, 2014
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