Sibling Relationships of Children with Autism ...

Sibling Relationships of Children with Autism Spectrum Disorder in the Context of Everyday Life and a Strength-Based Program Marissa L. Diener, Laura Anderson, Cheryl A. Wright & M. Louise Dunn

Journal of Child and Family Studies ISSN 1062-1024 Volume 24 Number 4 J Child Fam Stud (2015) 24:1060-1072 DOI 10.1007/s10826-014-9915-6

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Author's personal copy J Child Fam Stud (2015) 24:1060–1072 DOI 10.1007/s10826-014-9915-6

ORIGINAL PAPER

Sibling Relationships of Children with Autism Spectrum Disorder in the Context of Everyday Life and a Strength-Based Program Marissa L. Diener • Laura Anderson Cheryl A. Wright • M. Louise Dunn

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Published online: 6 February 2014 Springer Science+Business Media New York 2014

Abstract This research examined mothers’ and sisters’ perceptions of sibling relationships in families with a brother with autism spectrum disorder (ASD) in the context of a strengths-based, family-focused 3D technology program designed for youth on the spectrum. Seven sisters and six mothers participated in semi-structured interviews, which were coded for emergent themes. Both similarities and differences between sisters’ and mothers’ perceptions of the sibling relationship emerged from the narratives. Sisters and mothers framed the sibling relationship differently within the context of everyday life activities compared to the context of their brother’s involvement in the technology program that highlighted his skills and abilities. Within the context of everyday life, sisters described the dual nature of their relationships, involving both positive and negative qualities, whereas mothers focused on the challenges in the sibling relationship. Both mothers and sisters identified the ‘‘sister’’ role in the sibling relationship as that of a nurturer. Within the context of the technology program, mothers and sisters both perceived the boys’ roles as shifting positively relative to the context of everyday life. Sisters spoke of a sense of pride in their brother’s accomplishments in 3D design, whereas mothers spoke about their children being more engaged with one another because of their shared interests in the program. We discuss implications for interventions with families with a child with ASD. M. L. Diener (&) L. Anderson C. A. Wright Department of Family and Consumer Studies, University of Utah, 225 South 1400 East, Rm. 228 AEB, Salt Lake City, UT 84112-0080, USA e-mail: [email protected] M. L. Dunn Brenau University, Gainesville, GA, USA

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Keywords Autism spectrum disorder Siblings Technology Community-based participatory research Mothers’ perceptions

Introduction Sibling relationships tend to be the longest relationships for individuals and can provide important sources of support throughout the lifespan (Cicirelli 1995; Stoneman 2001). Siblings are often perceived as providing companionship and a unique influence on one another’s development (Brody 2004; Feinberg et al. 2012; Kramer 2010). As children, siblings usually interact daily; they frequently perceive one another as providing companionship, intimacy, and nurturance (Brody 2004; Kramer 2010). Children in the US are more likely to have a sibling in their household than a father, and European American siblings spend more of their free time with one another than with others (McHale and Crouter 1996). However, sibling relationships in families where one sibling has autism spectrum disorder (ASD) can be strained by the characteristics of the disorder. ASD is considered a neurodevelopmental condition classified by three core impairments: atypical social skills, decreased verbal and nonverbal communication, and repetitive stereotyped behaviors and/ or unusually restrictive interests (American Psychiatric Association 2013). This social communication disorder can present unique challenges to interpersonal relations including sibling relationships. Sibling relationships in families with a child with ASD are a particularly important family studies topic due to the increasing numbers of individuals being diagnosed with ASD. The autism diagnosis rate increased by 157 % from 2002 to 2008 (CDC 2012); thus, more children have

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siblings diagnosed with an ASD. The increased prevalence rates are attributed to a number of factors, including changes in diagnostic criteria, better tools for diagnosis, and greater awareness of ASD (Matson and Kozlowski 2011). Furthermore, given that ASD is almost 5 times more common among boys than girls, typically developing girls are more likely to have a male sibling with ASD than are males to have a sister with ASD (CDC 2012). Research on sibling relationships when one child has ASD often focused on child adjustment and outcomes such as internalizing and externalizing behaviors (see Meadan et al. 2010 for review). Some studies found that neurotypical children with a sibling with ASD show more behavior problems (Hastings 2003; Meyer et al. 2011; Ross and Cuskelly 2006; Verte et al. 2003), and poorer emotional health (Macks and Reeve 2007). Other studies showed no differences between neurotypical sibling pairs and siblings pairs where one child had ASD (Dempsey et al. 2012; Tomeny et al. 2012). Past research also found positive outcomes, such as higher empathy and patience, as well as greater social competence, in children with a sibling with ASD, relative to children with neurotypical siblings (Kaminsky and Dewey 2001; Verte et al. 2003) or siblings with chronic health conditions (Nielsen et al. 2012). Several studies have compared sibling relationships among children with siblings with ASD, Down syndrome (DS), and typically developing sibling pairs. Siblings of individuals with Down syndrome reported more contact and higher levels of positive affect in their sibling relationships than did the siblings of children with ASD (Orsmond and Seltzer 2007). Similarly, relationships between adult siblings were closer and more positive when one sibling had DS than when a sibling had ASD, and the adult siblings of people with DS showed better health and less depression than siblings of people with ASD (Hodapp and Urbano 2007). Other research showed that siblings of individuals with ASD reported greater feelings of embarrassment of their sibling than did siblings of individuals with no disability or with a non-ASD developmental disability (Mascha and Boucher 2006). Siblings of children with ASD were more negative about their relationships than children with siblings with intellectual disabilities or typically developing siblings (Bagenholm and Gillberg 1991; Hodapp and Urbano 2007). As with sibling relationships among typically developing siblings (Brody 2004; Kramer 2010), research on sibling relationships when one sibling has ASD indicates that relationships involve combinations of, or shifts between, positive and negative dimensions and emotions. Most sibling relationships among typically developing children involve both intense conflict and teasing, as well as pride, shared positive affect, and enjoyment (Brody 2004). Sibling pairs with one child with ASD identified experiences such as fun shared activities, pride, special intimacy, but also

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disruptive, aggressive behavior, prejudice and negative reactions from other people (Petalas et al. 2009). Similarly, in another study, siblings of children with ASD identified positive dimensions of having a sibling with ASD such as acceptance of the sibling but also negative aspects such as reduced recreational time with families, social isolation, and the need for social support (Angell et al. 2012). Functional levels of ASD and gender of siblings are likely important moderators of sibling relationships when a child has a sibling with ASD (Meyer et al. 2011). For example, adolescents engaged in more shared activities and positive affect with their sibling when the sibling with ASD showed fewer behavior problems (Orsmond et al. 2009). In another study, siblings of children with ASD that included moderate to severe intellectual disability reported sometimes feeling unsafe at home and that the sibling interfered with their peer relationships (Benderix and Sivberg 2007). The sample of children with ASD in their study had either a total lack of language or a major delay in verbal language, minimal or no interest in other people, as well as violent behavior towards others, self-injurious behavior, and were unable to be cared for at home. Thus, the results of this study may not generalize to the sibling relationship when one sibling has high functioning ASD. Gender can also be an important factor in the quality of the sibling relationship. Research on siblings who have a brother or sister with a disability indicates that sisters have more contact, do more caretaking, and report benefitting more from their role in the family than do brothers (Hodapp et al. 2010; Orsmond and Seltzer 2000). Sibling relationships that involve a child with ASD might be impaired due to the characteristics of autism (Ferraioli and Harris 2010; Kaminsky and Dewey 2001), as well as the changes in family dynamics (Nealy et al. 2012). For example, some mothers perceived that it was difficult to provide equal time and attention when they had one child with ASD and other typically developing children (Nealy et al. 2012). However, research on sibling relationships in families with a child with a disability indicates that differential parental treatment may be perceived as ‘‘legitimate’’ and ‘‘fair’’ (Baumann et al. 2005; McHale and Pawletko 1992), resulting in positive sibling relationships (Kowal and Kramer 1997). Another potential challenge for children with a sibling with ASD may be the lack of shared interests and competency levels for engagement in joint activities (Stoneman 2001). Siblings of children with ASD spent less time together than siblings of children with DS (Knott et al. 1995). Participating in joint activities of interest to both of the children involved might be one way to enhance these sibling relationships (Beyer 2009; Stoneman 2001). Given the increase in children with ASD, as well as the potential for a negative impact of ASD on the sibling relationship, strategies for improving sibling relationships in families with a child with ASD are important.

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Parents’ reports of the quality of the sibling relationship in families of a child with ASD were lower than sibling self-reported scores, indicating that parents perceived the sibling relationship more negatively than did the siblings themselves (Rivers and Stoneman 2003, 2008). This finding is consistent with research on typically developing children that demonstrates that mothers and their children demonstrate a lack of consensus regarding the negative dimensions of the sibling relationship, although there is more agreement on the positive aspects of the sibling relationship (Howe et al. 2011). Previous research has also suggested that there are differences in mothers’ and children’s perceptions of the sibling relationship in pairs with a child with ASD (Rivers and Stoneman 2003, 2008). Yet parent report is often used, rather than the siblings’ own perspective, limiting the frame of reference on sibling relationships. Only one of 12 studies in a review article included both the sibling and parent perspective on ASD and sibling relationships (Beyer 2009). The purpose of this research was to investigate the sibling relationships of students enrolled in a technology education program designed for youth with ASD that was family-focused, strength-based and built on the interests of youth with ASD. This community based participatory research program (CBPR) evolved to include siblings as a critical program component based on family input and feedback on program development through the collaborative research process. Based on the importance of multiple perspectives and shared experiences, we examined the perspectives of both mothers and sisters of brothers with autism in the context of a technology program designed for youth with autism. Our goal was to better understand the relationships between the children with autism and their siblings in the context of this strengths-based, familyfocused program. Most previous research on sibling relationships in children with ASD does not include a program in which siblings engage in joint activities, and the present study can shed light on family members’ lived experiences with such a program. Unlike quantitative research, we did not design the study for hypothesis testing or to provide a generalizable description of sibling relationships (Pope et al. 2000). Rather, we wanted to facilitate the systematic exploration of sibling relationships from multiple perspectives to provide a rich sense of mothers’ and sister’s experiences and to generate hypotheses for subsequent quantitative research (Willig 2008).

Method This study was part of a larger research program that used a family and community based participatory research (CBPR) approach (Minkler and Wallerstein 2008) as

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recommended by the National Institute on Disability and Rehabilitation Research (NIDRR) and the Interagency Autism Coordinating Committee (IACC 2011). The research included family members as ongoing advisors and co-researchers in the program implementation and evaluation. Sibling involvement evolved naturally as siblings attended the technology program where their brothers presented their 3D computer designs to a public audience, taught them 3D design skills, and attended family events sponsored as part of the education program. Our CBPR approach employed the experiences of an interdisciplinary academic team (faculty from Nursing, Social & Behavioral Science, Health, and Education). CBPR is a collaborative approach in which families are equitably involved in the research process (Minkler and Wallerstein 2008; Wallerstein and Duran 2006). In the present partnership, family members helped determine the implementation and evaluation of the program, the inclusion of the siblings, and the research questions addressed (Knight et al. 2013). Focus groups, family events, and lunch discussions were held regularly so that the researchers could evaluate the program and elicit feedback. The parents, siblings, and grandparents of the students participated by taking an active role in developing and giving input to the program design and research goals. Although both mothers and fathers were invited to participate in family events, focus groups, and research meetings, fathers were more likely to participate in the family and community events where their sons presented their 3D projects than in the focus groups and research meetings. Mothers participated in family events as well as focus groups and research meetings. Mothers discussed sibling relationships in focus groups prior to the present study and identified these relationships as important in the family dynamic, which led to the present study’s focus on sibling relationships, and the inclusion of mothers, but not fathers in the study. The technology education program from which this sample was drawn was advertised to parents for youth on the autism spectrum. The purpose of the program was to develop technology skills in youth with ASD who often have interest in computers and unique visual-spatial abilities (Grandin 1995; Kennedy and Banks 2011). The foundational software was SketchUp, a free 3D software design program used by architects, engineers, game developers and other professionals. With SketchUp, participants created 3D models that can be viewed from multiple angles; models can be rotated, animated, and manipulated to enhance the model’s features. In this way, the 3D software is a creative way to make an idea tangible. A certified instructor taught tool use and demonstrated the software features. Following group instruction, participants worked on creating their own designs. The youth presented their


3D designs at the end of every day and family members (parents, grandparents, and siblings) were invited to watch the presentations and ask questions. Finally, once the youth became proficient, they presented at community events and in their regular school classrooms to their school peers. Thus, the program was embedded in family and community participation (Wright et al. 2011). The families who participated in this study were involved in the technology program over a 2 year period (including summer camps and an afterschool program). All siblings involved in this study participated regularly in the program by attending sessions when their brothers presented their design projects, and participating in family, community events and focus groups. Participants The present study involved a purposive sample of sisters and mothers of seven of the nine program participants. Of the nine youth in the technology program, one high school student had adult siblings and one had siblings who had recently been adopted internationally. These two families did not participate in the sibling research. Thus, seven sisters participated, along with six of their mothers. One mother indicated a desire to participate, but was unable to schedule an interview because of time constraints. The diagnostic determination of autism for the siblings involved in the program was from data gathered through Individual Education Plans (IEPs) and corroborative data gathered from parent interviews. Six of the seven siblings were identified (via IEPs and parent interviews) as ‘‘high functioning ASD’’ with verbal skills and enrolled primarily in regular education classrooms. One of the students did not have an official autism diagnosis but had many other disabilities and classified as Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Under the DSM-5 classifications, all children fell under the Autism Spectrum Disorder classification by virtue of the clause that all DSM-IV PDD-NOS, Asperger Syndrome, and Autistic Disorder are automatically DSM-5 ASD (American Psychiatric Association 2013). By chance, all of the families who participated in the interviews had only two children: a boy (the child with ASD) and a girl (the sister). The families were primarily middle-class; most of the parents were college educated. The boys enrolled in the program ranged from 2nd to 8th grade. All of the brothers were in inclusive school classrooms except one, who was in a self-contained special education classroom. The sisters were between the ages of 7 and 14 (M = 10.41, SD = 3.04 years). Five of the sisters were younger than their brothers and two were older.

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Procedure Mothers were already familiar with the researchers from the program and the CBPR activities described above. They were initially contacted by email and invited to participate in interviews for this study. Semi-structured interviews took place at locations most convenient for mothers and the sisters, primarily in their homes, except for two interviews that took place in a room adjacent to the computer lab where the education program was held. The siblings had previously developed rapport with members of the research team by coming to regular sessions, attending presentations, and family events. Interviews with siblings lasted 20–30 min, and with mothers 45–90 min. The sibling interviews focused on perceptions of their general experiences with their sibling and of their brothers’ participation in the technology program (see Appendix). The interviews were semi-structured, with a list of guiding questions and prompts, but also flexibility to respond to ideas that arose during the interview. Sample interview questions and prompts included ‘‘Tell me about a typical day in your house with your brother’’, ‘‘Tell me about your relationship with your brother,’’ and ‘‘What have you seen your brother do with 3D modeling?’’. Mothers were also asked questions about their children’s relationships. Sample questions and prompts included ‘‘Tell me about the relationship between your children,’’ and ‘‘What was your experience with the technology program your son was enrolled in?’’ All interviews were audio recorded and transcribed verbatim by the interviewer, who was a graduate research assistant. Data Analysis A qualitative approach was used for data analysis. Credibility was established by using triangulation, member checking and comparing perspectives from multiple researchers over time (Bogdan and Biklen 2007; Brantlinger et al. 2005). The coding was an iterative process which involved multiple passes through the transcripts, identification and revision of themes and discussions among researchers and member checks. Both line-by-line coding and focused coding methods were used to tease out key points and major themes from the transcriptions from the ground up (Bogdan and Biklen 2007). Two researchers (a faculty member and a graduate student) initially read the transcripts and identified initial themes separately. These two primary coders discussed the themes they had identified and made revisions as necessary. Then, transcripts were re-read by the two primary coders to identify themes and evaluate whether new themes emerged. The independent coding was compared, discussed, and discrepancies were resolved. The coders also searched for disconfirming

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examples and evidence and used memos to identify concerns and questions and identify themes. Several times throughout this process, themes were presented with supporting quotations to the entire research team for feedback. The research team was an interdisciplinary group across four disciplines (social science, occupational therapy, nursing, and education) including faculty, graduate students, and one undergraduate who had participated in the program, community events, and focus groups. Following the discussions with the research team, the two coders revised the themes. After this process, member checking was conducted with the mothers to validate the themes. The themes presented below reflect mothers’ and research team’s input.

Results Two major themes emerged through the thematic analysis (see Fig. 1): (1) perceptions of the sibling relationship in the context of everyday activities, and (2) perspectives on sibling relationships in the context of the technology program. These themes emerged from several subthemes, some of which converged for mothers and sisters, and others differed. These themes and subthemes are discussed in greater detail below. Names have been changed to protect the identity of the participants (see Table 1 for pseudonyms and ages of participants).

Fig. 1 Themes and subthemes of mothers’ and siblings’ perceptions

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The Sibling Relationship in the Context of Everyday Activities This theme represents mothers’ and sisters’ perceptions of the sibling relationships in the context of daily life, such as at home before school or riding in the car. Within this theme, subthemes illustrated siblings’ perceptions of the dual nature of the relationship, mothers’ and sisters’ shared perceptions that sisters played a nurturing role in the sibling relationship, and mothers’ focus on the challenges of the sibling relationships. Sisters’ Perceptions: The Dual Nature of the Relationship On the one hand, the sisters easily identified activities that they enjoyed doing with their brothers in the context of daily life. Jennifer’s (age 9) comment illustrates the range of interests she and her brother shared, ‘‘Sometimes we like to play out in the snow… go to the school and play basketball, play the Wii, watch a movie, play on our DS’s’’. Sisters identified engagement in mutual activities and time spent together as major dimensions of their relationships with their brothers. Their siblings provided companionship, and they enjoyed spending time together engaged in activities of shared interest. One sister commented, ‘‘We like to do our homework together. Like we would help each other on stuff, on certain problems.’’ When asked about what it was like to have Alex as a brother, Jessica (age 12) commented on how she would miss the companionship her brother provided if she was an only child, ‘‘It’s fun. Really fun. Sometimes I think about how it would be to be an only child and I… it… It seems to me that it wouldn’t be very fun if it was just me.’’ On the other hand, sisters also identified challenges with the sibling relationship. There was an assumption on the part of the sisters that sibling relationships involved both positive and negative dimensions, and this dichotomy was the nature of the sibling relationship, rather than specific to having a brother with autism. Anna’s (age 14) comment reflects the assumption that the sibling relationship typically involves negative elements: ‘‘(the relationship is…) Sometimes stressful almost because he is just so loud and annoying but I guess all brothers are, right?’’ None of these sisters had a neurotypical sibling, and thus, had no comparison with another sibling. Jessica’s comment also revealed the dual nature of the relationships: ‘‘we argue quite a bit and um, usually we are pretty good though. We are nice to each other and we like to hang out a lot.’’ The sisters reported affection for their brothers, despite conflicts or challenges. An older sister, Caroline (14 years) mentioned, ‘‘I like him. Well, he’s my brother but he’s crazy’’ demonstrating that she felt affectionate toward him, as well as perceived he had some challenging behavior. Anna, an


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Table 1 Pseudonyms and ages of the sample Family #

Mother pseudonym

Pseudonym and age of daughter

Pseudonym and age of son with ASD

1

Mary

Isabella (7)

Sam (10)

2

Erica

Jennifer (9)

Ryan (12)

3

Younger

3

Barbara

Karen (10)

Curt (12)

2

Younger

4

Maria

Jessica (12)

Alex (14)

2

Younger

5

Susan

Caroline (14)

Ethan (11)

3

Older

6

Heather

Anna (14)

James (11)

3

Older

7

Cicely

Natalie (8)

Robert (11)

3

Younger

older sister, described her relationship with her brother this way, We totally ‘‘hate’’ each other sometimes, you know? Like annoy each other, but then other times he’ll be really nice. He is kind of like that friend that you have had forever that you just pick on all the time. As the previous quote exemplifies, siblings perceived positive and negative dimensions to their relationships, as is typical of most sibling relationships. This sense of the dual nature of the sibling relationship that involved both friendship and enjoyment, but also challenges and annoyance was a common theme to the sisters’ perspectives. Mother and Sibling Perceptions: Sibling as Nurturer Both the mothers and sisters frequently referred to the nurturing role of the sisters towards their brothers. Maria described the role that her younger daughter took on with her older brother by commenting, ‘‘One thing that I have noticed is Jessica kind of nurtures him, kind of care-takes him a little bit.’’ This seemed to be a bit of role reversal because Maria’s daughter was younger than her son. In a similar case where the sister was much younger than the brother, another mother reported, ‘‘She is very strong in reading so she will walk him through his spelling words and all that kind of stuff.’’ These quotes demonstrated that the mother recognized that the younger sibling was fulfilling the role of a nurturing sibling. Sisters also identified their role in the sibling relationship as one of nurturer. For example, sisters reported that they often helped their brothers with various tasks that came easily to the sister. For example, a younger sister Isabella (7 years) talked about helping out her brother with his interactions with his friends by saying: ‘‘Most of his friends, they are pretty nice… sometimes they hang out with me if Sam is like pouty. They play with me and some of my other friends.’’ Her description illustrated that the sister helped her brother’s social relationships by playing with his friends if he was having a bad day. Anna, an older

Age difference between siblings (years) 3

Sister older or younger Younger

sister, also described the caregiving that she did for her brother on a daily basis, thus fulfilling the role as a nurturer: ‘‘I don’t really see him in the morning because my school starts earlier but I know I start the shower for him and I wake him up and sometimes I make him breakfast.’’ Mothers’ Perceptions: Challenging Nature of the Sibling Relationship Although the sisters seemed to have expectations that the sibling relationship would involve both good and bad elements, mothers tended to describe the challenges of having a brother with autism. In contrast, the sisters appeared to accept having a brother with autism as a fact of life. One mother talked about the challenges of having a sibling with autism in this way, ‘‘Being the younger sibling of someone with a volatile personality, I think it’s really hard. You are a survivor.’’ Similarly, when describing the everyday interactions between their children, mothers tended to discuss the challenges of having a brother with autism. Mothers expressed disappointment for the sister in having to live with the trials of having a brother with autism. For example, Barbara talked about the difficulty that her daughter had with her brother saying, ‘‘This has happened so many times. (She) bursts into tears ‘why does it have to be this way? Why do I have to have a brother like this?’’ The mother perceived that it was difficult for her daughter to live with a brother with ASD. The challenges of the sibling relationship often involved the disruptive behavior of the brother, as one mother explained, ‘‘They have a really troubled relationship… because he will hurt her. He doesn’t always understand her energy and so he just kind of reacts to her. Sometimes it’s just really hard.’’ Mothers discussed the challenges of having a brother with autism. Although the mothers described their children spending time together, they perceived that it was difficult for them to interact with one another. Mothers referred to their children’s interaction as more parallel play than integrated play. This perception of their play was exemplified by

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Mary stating, ‘‘Sometimes they are just down in the playroom, and they are each doing their own thing and so they are not necessarily engaged with each other.’’ Another parent referred to the difficultly that her children had playing with one another in this way, Ryan is not a big outside person but sometimes Jennifer can get him outside… Sometimes they like to play on the Wii or something like that but um, they are just so different in the way that they… that their brains work that they… it doesn’t come together very often. Another challenge mothers identified for the sibling relationship was the difference in the competencies of their children. Mothers frequently compared their children to one another. They often talked about the strengths and weaknesses that their children possessed in relation to the skills of the other child in the family. The following quotes are examples from the interviews of how the mothers compared the skills of their daughter to the skills of their son. Erica described her children’s differences and emphasized why these differences complicated the sibling relationship. She said, Jennifer is naturally athletic. And she is really good. I mean she is very natural and Ryan doesn’t like that. Ryan, you know just approaches things from a strategic view, and she approaches it from an athletic sense so if they go out and play basketball, it’s just mayhem. And the computer, the computer is hard for them to do. It’s hard for them to do chores together. Another mother, Barbara, attributed a lack of shared activities to differences in learning styles and social abilities in her children: ‘‘She’ll sit and play the piano for a lot longer than he will… I mean like for time wise… he likes to go on the computer and play games but she’s just not that way, you know?’’ This mother also identified that because of these differences, it was hard for her children to engage in the same activity. Similarly, emphasizing the learning difference between her children, Mary stated, ‘‘She is not visual and he is… but you could sit down and give Isabella this long wordy explanation and she’d get it and he’d be lost two words into it.’’ This mother emphasized that her children are different from one another in the way that they learn. While these parents readily identified differences in their children, they also identified strategies to approach these differences as evidenced by the following comment from Susan, ‘‘We try to have them involved in different things because it makes it easier’’. Similarly, Maria believed that her children needed to be separated in order to accomplish certain tasks more efficiently. She explained, ‘‘They can’t do homework together. Homework has to be done in two

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separate rooms. That sort of stuff.’’ Thus, mothers used separation as a strategy to deal with the challenges they identified in the sibling relationship. Reframing Sibling Roles Through the Technology Program The mothers and siblings both discussed how they viewed their brother or son differently in the context of the technology program. In the context of everyday life, mothers often emphasized the differences between their children, with the child with autism often being compared less favorably to the neurotypical child. However, when the parents and siblings talked about the sibling role in the context of the technology program, there seemed to be a shift in the perceptions. Mary summed it up by saying, Some things just come so easy to her and a lot of times she just looks at him and goes ‘this is so easy.’ You know? And so it (the technology program) kind of let there be a role reversal a little bit with the two of them. Where he was really good at it and she maybe wasn’t. For many of the sibling pairs, the technology program provided an opportunity for the brother to be more competent than his sister. This success seemed to contribute to a shift in how the parents and the sisters perceived their brothers. Siblings’ Perceptions: Pride in Accomplishment The sisters expressed a great deal of pride in their brothers based on their 3D design presentations to families and at school. All the siblings had the opportunity to observe their brothers formally presenting their 3D designs in front of a large group of people such as classmates and teachers, or family and friends. For example, each of the sisters portrayed their brother as being the best or most competent student in the presentations and program. As Anna said, He is really good at making things. Because a lot of people download stuff from the warehouse and put them in little things or something but he makes stuff. I remember I saw him once. He made like a model of, I think it was some kind of gun but it was cool. Anna compared her brother to the other boys in the program and noted that he was the best because he didn’t just use the warehouse that allows children to download models that have already been created. Her brother used his imagination and created his own models. Not only did every sister think that her brother was the best student within the program, all sisters were also extremely proud of the work that their brothers did. When


asked about her brother’s projects, 10-year-old Karen responded by saying, ‘‘He has done amazing things! He’s been doing zoos and dragons.’’ Caroline expressed her pride in her brother by talking about his projects in this way, ‘‘I think they were pretty cool because I don’t know how to do any of that stuff and he does. And he’s good with games and stuff.’’ When asked what she thought about her brother’s presentation to his classmates at school, Karen said, ‘‘everyone loved it.’’ She was so proud that her brother had created something that all of this classmates and teachers liked. Although it was common that the sisters could not recall the specific 3D project their brothers were working on, perhaps because of the large number of projects their brothers created, their overall impressions of the projects were positive. Jennifer said, ‘‘I don’t remember what he was doing but it looked awesome!’’ In talking about her brother’s presentation, Karen stated, ‘‘I think he did the dragon one or the zoo one or the Halo one but he did a very good job.’’ These siblings had seen their brothers present multiple projects over the previous 2 years, and had an overall sense of pride for their brothers’ accomplishments with the design program. Anna, who is several years older than her brother, commented, ‘‘I am kind of proud of him sometimes because there are a lot of people like my age that don’t know how to work SketchUp.’’ She was very proud that her brother, who had struggled in other areas, now knew something that even people older than him did not know or understand. Thus, the sisters identified unique skills that their brothers had developed. Both the parents and the siblings commented on how competent their son or brother was in creating 3D designs. They were impressed with his skills and how competent he was in manipulating the software and in presenting his work to other people. Referring to a time when her brother presented his projects at the program, Anna said ‘‘He looks so smart and professional’’. Mothers’ and Siblings’ Perceptions: Reframed Roles in the Context of the Technology Program Mothers and sisters reframed the roles that the brother and sister played in the context of the technology program relative to everyday life. For example, both the mothers and the siblings discussed how their son and brother often had difficulty in social situations and with peers in the context of everyday life, but when they talked about friends within the context of the technology program, they felt like their son or brother ‘‘fit in’’ with those in the program. Anna talked about her brother’s friends outside of the program by saying, ‘‘He’s got school friends and his friends from basketball but most of them are really, kind of

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weird.’’ However, when Anna was asked about her brother’s friends from the program, she mentioned that she enjoyed having the boys from the program come to her house because it provided friends for her brother who were like him and who liked to do the same things that he liked to do. One of the mothers, Erica, also talked about her son’s previous experience with lower functioning peers in social skills and other interventions programs, as well as with typically developing peers. She perceived that he had more in common with the peers at the technology program, enabling him to develop friendships, because he could be himself around peers with similar interests and levels of functioning. She said: I think it’s been really good for him to be around these kids because we have done so many workshops, and so many social skills groups and so many programs and Ryan is always the highest functioning and he kind of gets nervous around the other kids and this (technology program) has been kind of his peers. He doesn’t have to, you know, act normal or doesn’t have to worry about the other kids being affected. Many of the mothers expressed the idea that they were excited to have a place where their sons could go and be with peers similar to them, instead of feeling like others were so different from them. Susan also talked about her son’s ability to fit in with the other kids in the technology program by saying ‘‘It was somewhere that [the boys] were accepted the way they are and it’s something that they could do [easily].’’ This was important to Susan because children at other places had not always accepted her son, but in the technology program he had a place where he ‘‘belonged’’ because of his strengths. In talking about the mentor/instructor, one mother commented, It is really helpful to have someone like him (Steve) communicate with him on a really equal level. What I mean is that he talks to these kids with such respect and he talks to them like they are his colleagues and he respects their ideas in a way that has made my son feel really important. The majority of the mothers commented on the fact that it was refreshing to have an adult accept their son for whom he was, and this allowed their sons to feel like they truly fit in. One mother noted that this was the first time that her son had been accepted because none of the people involved in the program were trying to ‘‘fix’’ him. Both the mothers and sisters identified a greater level of competency in the context of the technology program than expressed in the context of everyday life. Anna expressed her brother’s level of competency and skill by saying, ‘‘I

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know when I had my career and technical engineering class that like I was thinking ‘if only James could do this for me.’ Because I had to make something on SketchUp and I wouldn’t know how to do it.’’ Anna acknowledged that James was better at 3D designs even though he was several years younger than her. The mothers’ were also proud of their sons in the way they learned 3D technology. One mother noted, ‘‘The way that he manipulates the computer, it’s just awe inspiring.’’ Just as the sisters were impressed with their brothers’ abilities to present the work that they had created, the mothers were also impressed with their sons’ presentations. Maria said, ‘‘I was just so amazed the first time I saw him present. He really felt like he was an expert on this project. That was really impressive to me.’’ The technology program provided one of the first opportunities for the sons to be better at an activity than the sisters. Barbara commented, ‘‘The whole SketchUp thing… In a way that is one of things that Curt can be better at than Karen.’’ This was a major change in perceptions of roles for most of the families. The parents perceived that the brother had a skill were he could excel relative to his sister. The parents loved that they had found something where their son could succeed. Other parents noted that they wanted to make sure that their son continued to be better at 3D design than their daughter. It provided an activity where the son could be in the limelight. Barbara summarized her son’s thoughts by saying, You could see in the back of his mind, ‘I can’t let her get better than me because she is better than me at other things. So he lets her in and there is a really big interest until she gets too much of interest and then he pushed away because he wants to be top dog. Barbara also explained, ‘‘I think that she may have felt that he was like ‘I don’t really want you here. This is mine. This is my place where I can go.’’ Another mother noted how she liked that her son had something where he could excel and she wanted to make sure that it remained ‘‘his’’ thing. She commented, ‘‘And Karen has so many things that she does and she’s been interested for him to teach her some stuff but you know Curt wants it to be his way and I have a feeling, that at least for a little while longer, it’s going to be Curt’s thing.’’ This mother wanted to ensure that Curt was able to keep his unique computer skills by not letting his sister Karen get too advanced in 3D modeling. On the other hand, Maria appreciated having her daughter involved in the program because ‘‘his sister could be there to witness that and she could see him kind of shine and be a star and be super good at something and that she would be asking him for advice and needing his help.’’ She loved that her daughter was able to see her brother in the

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spotlight. She felt that it provided a positive opportunity for her daughter to see her brother excel. The sisters also described how the skill development in their brother had created a role reversal in the sibling relationship. The relationship evolved from an emphasis on her being an expert with everyday tasks to him being an expert with 3D modeling. One sister summed up the role reversal in her statement that, ‘‘He sort of shows me what I can do when I need help.’’ This sister enjoyed working on the computer with her brother, and she liked when he was able to help her with complicated tasks. Mothers’ Perceptions: Siblings Engaged Positively with One Another As discussed in the first theme, in the context of everyday activities, mothers perceived that their children were engaged in separate activities, even when together physically. The majority of mothers reported a shift in the way that their children interacted with one another following the technology program. The mothers perceived that their children had found a common computer related activity they could do together. The majority of the mothers reported how striking it was to see their children interacting positively with one another during aspects of the program. Barbara recalled, ‘‘One time they were like giving this presentation together. He just called her up from the audience. That was amazing! That was absolutely amazing! They normally never would have worked together like that.’’ The mothers felt that the technology program had provided a positive opportunity for the siblings to work together. Maria also shared how the program had provided an opportunity for her children to work together in a positive environment. She stated, I just think it’s been a really great experience for both of them and it’s just really unique and special that it’s something that they can share and really enjoy together and I mean, anything that they are doing and bonding at the same time is everything that you want. In addition to the benefit of the positive environment of the sibling relationship, mothers also commented on the relationships that their daughters established with the other sisters in the technology program. One mother, Barbara, described a benefit of the program for her daughter, Karen, ‘‘She enjoyed Isabella, Sam’s sister and Jennifer, of course. She had fun playing with them.’’ Jennifer’s mother Erica also described the joy of shared activities with the other girls at the program because of the similarities in the experiences with a sibling with ASD, ‘‘She and Karen had a blast… And I think, you know, that their (sibling) relationship is kind of similar.’’


Discussion The current study adds to the qualitative literature on sibling relationships where one of the siblings has ASD. It also highlights the benefits to the sibling relationship when the child with ASD is involved in a strength-based program that promotes their skills and abilities and involves siblings. Two major themes emerged: framing sibling roles in the context of everyday life and reframing the sibling roles from involvement in a strength-based, family-focused technology program. Three primary implications are addressed in this discussion: (1) focusing on the positive dimensions of the sibling relationships, particularly for mothers, (2) providing opportunities for the sibling with ASD to demonstrate their talents and abilities, and (3) including siblings and family members in strength-based, family focused programs for youth with ASD. First, sisters perceived the sibling relationship differently than did mothers. The sisters easily identified the positive aspects of their relationships with their brothers, whereas the mothers focused on the parts of the relationship that were more difficult. The siblings discussed activities that they enjoyed doing together with their brothers and described how they cared for their brothers by helping them with tasks that were difficult for them. They viewed their relationship as typical of sibling relationships. When the mothers discussed the sibling relationship within the context of everyday life, they focused more on the challenges that their son with autism contributed to the sibling relationship and often made social comparisons between their children. Mothers attributed their children’s difficulties in interacting with one another to these differences. These findings are consistent with previous research showing that mothers experience great concern and guilt about the impact of their child with ASD on their typically developing children (Meirsschaut et al. 2010). However, the findings from the present study suggest that mothers may perceive the sibling relationship quite differently than their children perceive it. Previous research on mothers’ and fathers’ perceptions also demonstrate differences in how parents perceive the sibling relationship (Nielsen et al. 2012), indicating that relying on a single report or relationship quality is problematic, and supporting a family systems approach to intervention strategies with children with ASD (Arnold et al. 2012). Research on typically developing sibling relationships also demonstrates that mothers desire greater warmth between siblings than they actually observe, and suggests that parents may have inappropriately high standards for the sibling relationship (Kramer and Baron 1995). These findings suggest that family-focused programs for youth with ASD may want to help parents identify their stereotypes of sibling relationships and focus on the positive

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dimensions of these relationships versus aspects that are more challenging. A balanced approach is appropriate with an emphasis on positive aspects of the sibling relationships. This type of cognitive reframing in which mothers view a situation in a different light to perceive it more positively is related to higher maternal well-being and appears to be useful to promote greater mental health among mothers of children with ASD (Benson 2010). It is important to note that both the parents and the siblings focused on the social interactions that took place with the context of the technology program and within the context of everyday life. The sibling relationship was important and meaningful in both contexts. The findings of the current study are consistent with previous research on children with siblings with ASD demonstrating that they accept their sibling and feel pride in their sibling (Angell et al. 2012; Petalas et al. 2009). As with neurotypical siblings, there were also challenges (Orsmond et al. 2009). Sibling relationships in families with typically developing children are also characterized by ambivalence (Kramer 2010). Family based programs should focus not just on reducing sibling conflict, which often leads siblings to avoid one another and engage in separate activities, but should also focus on facilitating positive engagement (Oppenheim-Leaf et al. 2012). Secondly, in terms of implications, youth with ASD need opportunities to demonstrate their skills and abilities. The technology program provided an opportunity for the siblings and parents to view the sibling relationship in a positive context. Because the program was strengths-based, it allowed the siblings and parents opportunities to see the unrecognized skills that their brothers and sons possessed. When family members were able to observe youth with ASD successfully engaged in activities that play to their strengths, their perspectives of the individual with ASD differed relative to other contexts (Wright et al. 2011). The benefits may also extend to relationships in the family. The technology program provided an opportunity for role reversal in that the sisters asked for help from their brothers instead of the other way around. Consistent with a family systems approach, strength-based programs that include siblings may benefit not only the child with ASD, but also affect the larger family, including the sibling relationship (Gardiner and Iarocci 2012; Turnbull et al. 2011). These findings support that siblings with autism need opportunities like the technology program to show their talents and abilities, particularly to their family members and siblings. Involving siblings and family members in strengthbased, family focused program to demonstrate the skills of students with ASD is an important approach. Not only does it enable family members to feel pride in their family member with ASD, it may also provide an avenue of common engagement and interest for siblings. Positive

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engagement in a shared activity is a critical component of successful sibling relationships (Kramer 2010). Another benefit is that including family members may provide an opportunity for siblings to meet other youth with siblings with ASD. Developing relationships with other children with siblings with ASD may provide opportunities for social support and the identification of coping strategies (Angell et al. 2012; Tsao et al. 2011). Previous research on children with siblings with ASD indicated that they benefitted from talking with others who understood their situation (Angell et al. 2012; Rivers and Stoneman 2003). Strength-based, family centered programs should involve siblings and provide peer support for those with a sibling with ASD as indicated by this research. The small purposive sample limits the generalizability of the study. Furthermore, all of the families in the study had only two children and the siblings were girls with brothers with ASD. Previous research indicates that sisters are closer to their siblings and may provide more of a nurturing role than brothers (Orsmond and Seltzer 2000). The results may have been different if there was greater gender variation and family size to draw comparisons within the context of sibling relationships. Although the present study was not designed to be an intervention, given the theme that emerged regarding reframed expectations, it may have been informative to have pre- and post-measures of the sibling relationship, and to determine the extent to which the results generalize using a sample with a greater range of ASD symptomatology. It is also important to note that the siblings with ASD were not included in the study because they had difficulty verbalizing their feelings about relationships. Nonetheless, it would have been beneficial to also include their perspective on the sibling relationship. Given that previous research indicates that sisters have more positive perceptions of the sibling relationship than brothers do (Kim et al. 2006), future research should examine the sibling relationships of boys. Future research might include multiple perspectives on the sibling relationship, by examining the perspective of sibling with ASD through alternative methodologies such as drawings or the use of technology. One of the strengths of the study came from the existing relationships with the parents and siblings and the CBPR approach that included multi-generational family members (Wright et al. 2011). This study of sibling relationships has provided a foundation for future research and interventions for programs that are strength-based and family-focused. This study could be replicated with another group of siblings who have a brother or sister who participates in future programs. The results point to the importance of incorporating the siblings into a strength-based, family focused program for students with ASD. The technology program that was the context of this research may have provided an

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opportunity for the siblings to enhance their relationship with their brothers, and it will be useful to use these findings to broaden future programs with more sibling inclusion. Siblings could participate in the program, support groups, family events, presentations, and evaluative focus groups. A program geared towards having the sibling with ASD teach their sisters about 3D technology was key to the unfolding sibling interactions. Allowing the student with ASD to demonstrate skills that siblings and parents were proud of was important, and this research provided an inside view of this positive dimension and success of the strength-based, family focused technology program for students with ASD.

Appendix Interview Questions for Siblings • • • • • •

Tell me about a typical day in your house with your brother. Tell me about your relationship with your brother. What is your favorite thing to do with your brother? What is challenging with your brother? What do you know about SketchUp? What have you seen your brother do with SketchUp?

Interview Questions for Mothers • • • • • • •

Tell me about the relationship between your children. What are some things that your children enjoy doing together? What are some things that are difficult for your children to do together? What was your experience with the SketchUp workshops? Did your other child (sibling) have a role in the workshops? If so, what was it? If not, why not? What did your child (sibling) enjoy about the workshops? What were the challenges for your child (sibling) with the workshops?

References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Angell, M. E., Meadan, H., & Stoner, J. B. (2012). Experiences of siblings of individuals with autism spectrum disorders. Autism Research and Treatment, 2012, 1–11.

Author's personal copy J Child Fam Stud (2015) 24:1060–1072 Arnold, C. K., Heller, T., & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50, 373–382. Bagenholm, A., & Gillberg, C. (1991). Psychosocial effects on siblings of children with autism and mental retardation: A population based study. Journal of Mental Deficiency Research, 35, 291–307. Baumann, S., Dyches, T., & Braddick, M. (2005). Being a sibling. Nursing Science Quarterly, 18, 51–58. Benderix, Y., & Sivberg, S. (2007). Siblings’ experiences of having a brother or sister with autism and mental retardation. A case study of 14 siblings from 5 families. International Pediatric Nursing, 22(5), 410–418. Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4, 217–228. doi:10.1016/j.rasd.2009.09.008. Beyer, J. F. (2009). Autism spectrum disorders and sibling relationships: Research and strategies. Education Training in Developmental Disabilities, 44(4), 444–452. Bogdan, R. C., & Biklen, S. K. (2007). Qualitative research for education: An introduction to theories and methods (5th ed.). Boston, MA: Pearson Education Inc. Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71, 195–207. Brody, J. (2004). Siblings’ direct and indirect contributions to child development. Current Directions in Psychological Science, 13, 124–126. doi:10.1111/j.0963-7214.2004.00289. Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders: Autism and developmental disabilities monitoring network, United States, 2008. Report for Morbidity and Mortal Weekly, 61(3), 1–19. Cicirelli, V. G. (1995). Sibling relationships across the lifespan. New York: Plenum Publishers. Dempsey, A. G., Llorens, A., Brewton, C., Mulchandani, S., & GoinKochel, R. P. (2012). Emotional and behavioral adjustment in typically developing siblings of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 1393–1402. Feinberg, M., Solmeyer, A. R., & McHale, v. (2012). The third rail of family systems: Sibling relationships, mental and behavioral health, and preventive intervention in childhood and adolescence. Clinical Child and Family Psychology Review, 15(1), 43–57. Ferraioli, S. J., & Harris, S. L. (2010). The impact of autism on siblings. Social Work in Mental Health, 8, 41–53. Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33, 2177–2192. doi:10.1016/j.ridd.2012.06.014. Grandin, T. (1995). Thinking in pictures. London: Doubleday. Hastings, R. P. (2003). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support. Journal of Autism and Developmental Disorders, 33(2), 141–150. Hodapp, R. M., & Urbano, R. C. (2007). Adult siblings of individuals with Down syndrome versus with autism: Findings from a largescale US survey. Journal of Intellectual Disability Research, 51, 1018–1029. Hodapp, R. M., Urbano, R. C., & Burke, M. M. (2010). Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and Developmental Disabilities, 48, 52–62.

1071 Howe, N., Karos, L. K., & Aquan-Assee, J. (2011). Sibling relationship quality in early adolescence: Child and maternal perceptions and daily interactions. Infant and Child Development, 20, 227–245. Interagency Autism Coordinating Committee, US Department of Health and Human Services. (2011). The interagency autism coordinating committee strategic plan for autism spectrum disorder research, January 18, 2011. Retrieved from http:// iacc.hhs.gov/strategic-plan/2011/future.html (Accessed April 13, 2010). Kaminsky, L., & Dewey, D. (2001). Sibling relationships of children with autism. Journal of Autism and Developmental Disorders, 31, 399–410. Kennedy, D. M., & Banks, R. S. (2011). Bright not broken: Gifted kids, ADHD, and autism. New York: Wiley. Kim, J. Y., McHale, S. M., Osgood, D. W., & Crouter, A. C. (2006). Longitudinal course and family correlates of sibling relationships from childhood through adolescence. Child Development, 77(6), 1746–1761. Knight, V. F., McKissick, B. R., & Saunders, A. (2013). A review of technology-based interventions to teach academic skills to students with autism spectrum disorder. Journal of Autism and Developmental Disorders,. doi:10.1007/s10803-013-1814-y. Knott, F., Lewis, C., & Williams, T. (1995). Sibling interactions of children with learning disabilities: A comparison of autism and Down’s syndrome. Journal of Child Psychology and Psychiatry, 56, 965–976. Kowal, A., & Kramer, L. (1997). Children’s understanding of parental differential treatment. Child Development, 68, 113–126. Kramer, L. (2010). The essential ingredients of successful sibling relationships: An emerging framework for advancing theory and practice. Child Development Perspectives, 4(2), 80–86. Kramer, L., & Baron, L. A. (1995). Parental perceptions of children’s sibling relationships. Family Relations, 44(1), 95–103. Macks, R. J., & Reeve, R. E. (2007). The adjustment of non-disabled siblings of children. Journal of Autism and Developmental Disorders, 37, 1060–1106. Mascha, K., & Boucher, J. (2006). Preliminary investigation of a qualitative method of examining siblings’ experiences of living with a child with ASD. Journal of Intellectual and Developmental Disabilities, 52, 19–28. Matson, J. L., & Kozlowski, A. M. (2011). The increasing prevalence of autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 418–425. doi:10.1016/j.rasd.2010.06.004. McHale, S. M., & Crouter, A. C. (1996). The family contexts of children’s sibling relationships. Advances in Applied Developmental Psychology, 10, 173–195. McHale, S. M., & Pawletko, T. M. (1992). Differential treatment of siblings in two family contexts. Child Development, 63(1), 68–81. Meadan, H., Stoner, J. B., & Angell, M. E. (2010). Review of the Literature Related to the Social, Emotional, and Behavioral Adjustment of Siblings of Individuals with Autism Spectrum Disorder. Journal of Developmental and Physical Disabilities, 22, 83–100. Meirsschaut, M., Roeyers, H., & Warreyn, P. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mother’s experiences and cognitions. Research in Autism Spectrum Disorders, 4, 661–669. Meyer, K. A., Ingersoll, B., & Hambrick, D. Z. (2011). Factors influencing adjustment in siblings of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1413–1420. doi:10.1016/j.rasd.2011.01.027. Minkler, M., & Wallerstein, N. (Eds.). (2008). Community based participatory research for health. San Francisco: Jossey-Bass.

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Author's personal copy 1072 Nealy, C. E., O’Hare, L., Powers, J. D., & Swick, D. (2012). The impact of Autism Spectrum Disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 15, 187–201. Nielsen, K. M., Mandleco, B., Roper, S. O., Cox, A., Dyches, T., & Marshall, E. S. (2012). Parental perceptions of sibling relationships in families rearing a child with a chronic condition. Journal of Pediatric Nursing, 27, 34–43. doi:10.1016/j.pedn.2010.08. 009. Oppenheim-Leaf, M. L., Leaf, J. B., Dozier, C., Sheldon, J. B., & Sherman, J. A. (2012). Teaching typically developing children to promote social play with their siblings with autism. Research in Autism Spectrum Disorders, 6, 777–791. Orsmond, G., Kuo, H., & Seltzer, M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and wellbeing in adolescence and adulthood. Autism, 13(1), 59–80. Orsmond, G., & Seltzer, M. M. (2000). Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship. American Journal of Mental Retardation, 105, 486–508. Orsmond, G., & Seltzer, M. (2007). Siblings of individuals with autism or Down syndrome: Effect on adult lives. Journal of Intellectual Disability Research, 51, 682–696. Petalas, M. A., Hastings, R. P., Nash, S., Downey, A., & Reilly, D. (2009). ‘‘I like that he always shows who he is’’: The perceptions and experiences of siblings with a brother with autism spectrum disorder. Autism, 13(4), 471–483. Pope, C., Ziebland, S., & Mays, N. (2000). Qualitative research in health care. Analysing qualitative data. British Medical Journal, 320, 114–116. Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental Disorders, 33(4), 383–394. Rivers, J. W., & Stoneman, Z. (2008). Child temperaments, differential parenting, and the sibling relationships of children with

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J Child Fam Stud (2015) 24:1060–1072 autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1740–1750. Ross, P., & Cuskelly, M. (2006). Adjustment sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorders. Journal of Intellectual & Developmental Disability, 31, 77–86. Stoneman, Z. (2001). Supporting positive sibling relationships during childhood. Mental Retardation and Developmental Disabilities Research Reviews, 7, 134–142. Tomeny, T. S., Barry, T. D., & Bader, S. H. (2012). Are typically developing siblings of children with autism spectrum disorder at risk for behavioral, emotional, and social maladjustment? Research in Autism Spectrum Disorders, 6, 508–518. Tsao, L. L., Davenport, R., & Schmiege, C. (2011). Supporting siblings of children with autism spectrum disorders. Early Childhood Education Journal,. doi:10.1007/s10643-011-0488-3. Turnbull, A., Turnbull, H. R., Erwin, E. J., Soodak, L. C., & Shogren, K. A. (2011). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (6th ed.). Columbus, OH: Merrill. Verte, S., Roeyers, H., & Buysse, A. (2003). Behavioral problems, social competence and self-concept in siblings of children with autism. Child: Care, Health & Development, 29, 193–205. Wallerstein, N. B., & Duran, B. (2006). Using community-based participatory research to address health disparities. Health Promotion Practice, 7, 312–323. doi:10.1177/1524839906 289376. Willig, C. (2008). Introducing qualitative research in psychology. New York: Open University Press. Wright, C., Diener, M. L., Dunn, L., & Wright, S. D. (2011). SketchUpTM: A technology tool to facilitate intergenerational family relationships for children with autism spectrum disorders (ASD). Family and Consumer Studies Research Journal, 40, 135–149.