Supporting Siblings of Children with Autism Spectrum Disorders

Transcription

1 DOI /s Supporting Siblings of Children with Autism Spectrum Disorders Ling-Ling Tsao Randy Davenport Cynthia Schmiege Ó Springer Science+Business Media, LLC 2011 Abstract Research studies have shown the importance of early intervention services for young children with autism spectrum disorders (ASD) and their families. However, most attention has been given to the effectiveness of treatments solely for children with ASDs. Because the family centered practice has been emphasized and supported by many researchers and legislation, involving family members other than children with ASDs and their parents in the assessing, planning, and implementing interventions is seen as crucial. The purpose of this article is to review what sibling relationships look like for a typically developing sibling of a child with an ASD and what resources are available for parents and specialists to support siblings of children with ASDs. Keywords Autism spectrum disorder (ASD) Siblings Early childhood Support Introduction Autism is a pervasive developmental disorder. It affects essential human behaviors such as the ability to communicate ideas and feelings, imagination, and the establishment L.-L. Tsao (&) C. Schmiege Family & Consumer Sciences, University of Idaho, Moscow, ID, USA ltsao@uidaho.edu C. Schmiege cynthias@uidaho.edu R. Davenport Department of Psychology, University of Idaho, Moscow, ID, USA dave7122@vandals.uidaho.edu of relationships with others (National Research Council 2001). In a recent report, the Centers for Disease Control and Prevention (2009) estimates an average of 1 in 110 children in the U.S. has an Autism Spectrum Disorder (ASD). Due to these alarming statistics, the topic of ASDs has become a nation-wide concern, prompting discussions among professionals and parents seeking the best possible intervention approaches to support families of children with ASDs (O Brien and Daggett 2006). There are many unknowns about the most effective treatment strategy for children with ASDs. However, it is generally agreed that early intervention programs are crucial and effective. The National Research Council recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder (p. 6, NRC 2001). Given the importance of early intervention for a child with an ASD, much attention is being devoted to the characteristics of effective educational interventions for children with an ASD. In the family context, attention is typically focused on effective intervention for a child with an ASD. However, many parents, specialists, and researchers have concerns for other children in the family as well (Hastings 2007). Particularly, there is concern about how best to support typically developing siblings of children with an ASD (Kilmer et al. 2008; Lock 2009; Schuntermann 2009). Consequently, the purpose of this paper is to review and synthesize the literature on support for siblings of children with an ASD. With this purpose in mind, this review focuses on approaches for supporting and fostering positive sibling relationships, with consideration of the family system where appropriate. For the purpose of this paper, we refer to a child with an ASD as the focal child, and we refer to a typically developing sibling of a child with a disability or an ASD as the sibling or siblings. We focused on two basic questions

2 about what it means to be a sibling of a child with an ASD: What is it like to grow up as a sibling of a child with autism? And what can we do to support siblings of children with autism? These questions helped guide us as we reviewed the literature, and we hope to address these questions throughout this review. Before discussing the available support for siblings, it is important to consider what has been researched and what is currently known about sibling relationships. Sibling Relationships One special characteristic of sibling relationships is that they share biological and affective ties with parents. Brothers and sisters can be a source of companionship, help, and emotional support. In their interactions with each other, siblings may acquire many social and cognitive skills that are central to healthy social development (Furman and Buhrmester 1985). Travis and Sigman (1998) suggested that siblings may be especially important for children with autism because they provide opportunities to socially interact with other children under maximally supportive conditions (Rivers and Stoneman 2008). Research suggests that children with ASDs need exposure to typically developing children to gain experience and learn about proper social interaction and relationships (Knott et al.1995; Tsao and Odom 2006). Typically developing siblings have great potential to influence children with ASDs, particularly in early development, and in the acquisition of social competencies. Related to the discussion of sibling relationships is the discussion of what it is like to grow up as a sibling of a child with an ASD. McHale et al. (1986) interviewed 30 siblings of children with autism, 30 siblings of children with cognitive disabilities, and 30 siblings of typically developing children between the ages of 6 and 15. The children were asked questions about their sibling relationships, their attitudes, and their perceptions of their siblings. For both the group with siblings of children with autism and the group with siblings of children with cognitive disabilities, negative sibling relationships were associated with worries about the future of the child with a disability, perceptions of parental favoritism toward the child with a disability, and feelings of rejection toward the child with a disability. Mascha and Boucher (2006) interviewed 14 siblings of children with autism between the ages of 11 and 18 and identified negative reactions, such as feelings of embarrassment related to the focal child s behavior problems (i.e., aggression or uncontrolled anger). Gold (1993) found siblings of boys with autism scored higher on the depression measure of the Children s Depression Inventory than siblings of typically developing boys. Thereby, siblings of children with autism may have potentially more internalizing symptoms particularly when they are moving into adolescence. (However, the researchers cautioned generalizing the finding due to a disproportionate number of adolescent siblings compared to the control group). Compared to siblings of typically developing children, higher levels of attentional problems, loneliness, and problems with peers have been found in siblings of children with autism (Bagenholm and Gillberg 1991). Kaminsky and Dewey (2001) also found that in families with a child with an ASD, sibling relationships were characterized by less intimacy, less prosocial behavior and less nurturance as measured by siblings perceptions of their relationships on a sibling relationship questionnaire. This is consistent with another study by Knott et al. (1995), who reported that children with autism and their typically developing siblings spent less time together than typically developing sibling dyads. In contrast to these potentially negative findings concerning sibling relationships, McHale et al. (1986) indicated that siblings with a good understanding of their brother or sister s disability, had positive sibling relationships when they perceived that parents and peers had positive reactions toward their sibling with a disability. Mates (1990) found that siblings of children with autism had high self-concepts, healthy academic performance, and healthy behavioral adjustment as rated by their parents and teachers. These positive findings are also in line with other similar research studies (i.e., Berger 1980; McHale et al. 1986). Although autism has doubtlessly had an impact on the family (e.g., Hastings 2003a; Hastings et al. 2005; Ross and Cuskelly 2006), these positive findings indicate that in some instances, siblings of children with autism seem to adjust well to their family situation, and occasionally perform better in some aspects of their social emotional development (e.g., the development of their mean self concept) than the normative sample (Mates 1990). Other positive impacts related to having a sibling with a disability may involve more acceptance (Roeyers and Mycke 1995), no deficits in social competence (Kaminsky and Dewey 2002; Rodrigue et al. 1993), and greater admiration and less competition and quarrels (Knott et al. 1995). Siblings with positive perceptions and experiences related to their sibling with a disability are likely to adapt successfully to the impact of having a disability on the family (Taunt and Hastings 2002). When siblings perceived their parents and peers as reacting positively to the child with a disability, they reported more positive relationships with their sibling (Petalas et al. 2009). The impact of having a sibling with an ASD may vary among children; as Stoneman (2001) pointed out, the research on sibling relationships is often contradictory and

3 difficult to interpret. Numerous researchers have found that the relationship between children with disabilities and their siblings is usually positive (McHale et al. 1986; Stoneman et al. 1987; Bagenholm and Gillberg 1991; Lobato et al. 1991). However, some negative impacts of ASD on sibling relationships have also been found (e.g., Bagenholm and Gillberg 1991; Kaminsky and Dewey 2001). Certain variables may directly or indirectly affect the adaption of typically developing siblings to their brothers or sisters with disabilities, such as gender, age, information, knowledge about the disability of the child with a disability, or age difference between the typically developing siblings and children with disabilities (Unal and Baran 2011). While there is little or nothing that can be done about the age of children, their ordinal position or the severity of the ASD, there are strategies that can be implemented to promote and facilitate positive relationships between typically developing siblings and their brother or sister with an ASD (Beyer 2009). Supports and Approaches Only a limited number of researchers have directly attempted to empirically validate support strategies for siblings that help them develop positive, mutually satisfying relationships with their brothers and sisters (Stoneman 2001). The lack of research on this topic is remarkable because intervention may help ensure that positive rather than negative outcomes of sibling relationship development occur (Mascha and Boucher 2006). Society has no greater task than to provide for the healthy, positive development of children; the ultimate goal is to support children with disabilities and their siblings in ways that enhance their chances of growing into psychologically healthy adults with firmly established positive interpersonal relationships (Stoneman 2005, p. 347). Parenting For a variety of reasons, parents may not treat all of their children identically. Not only is each child a unique individual, but parents also experience developmental changes over the course of parenting. This is perhaps particularly an issue for families with a child with a disability. For typically developing children, research has shown that differential parental treatment of siblings is linked to adjustment problems (Feinberg and Hetherington 2001). Many studies have also documented increased differential parenting in families with children with disabilities, generally favoring the child with a disability (Lobato et al. 1991; McHale and Pawletko 1992). Dunn and McGuire (1992) highlight an impressive consensus from the research that maternal differential treatment is linked to the quality of sibling relationships for typically developing children (e.g., Boer 1990; Brody and Stoneman 1987; Bryany and Crockenberg 1980, Dunn and Plomin 1990) and even for siblings of children with disabilities (McHale and Gamble 1989). When siblings are dissatisfied with differential parenting, the quality of the sibling relationship suffers (Rivers and Stoneman 2008). It is not simply a matter of poor sibling relationships and parental favoring that lead to increased psychological difficulties, but it is a more complex issue involving children who are sensitive to changes in the wider sibling context (Richmond et al. 2005; Schuntermann 2007). Siblings may not always perceive differential parenting as favoritism siblings attitudes concerning how they perceive the differential treatment has much to do with their satisfaction with the sibling relationship. Children do not always object to being treated differently from their siblings, as long as they can find meaning in the difference and perceive the difference as being fair (Kowal et al. 2002). Similarly, McHale et al. (2000) found that differential treatment from parents does not always have negative implications for siblings; it is important to consider the subjective evaluation and the legitimacy of the differential treatment of the siblings themselves. Both children who have a sibling with a disability and children who have typically developing siblings experience a full range of feelings related to their brother or sister, their parents, themselves and other people in general. Many siblings experience similar emotions. Some feel excitement, anger, frustration and others might feel unfavorable or loneliness. Parenting Strategy: Communication It is very important to acknowledge the impact of siblings perceptions about parenting on their sibling relationship before trying to support siblings. Therefore, open communication is one way parents can provide support for siblings of children with autism. Gold (1993) stressed the benefits experienced by siblings when open communication was possible, especially when family members were free to communicate openly about the child with a disability. For more information on specific strategies for facilitating effective family communication (e.g., good listening skills for creating an atmosphere where siblings can feel free to reveal personal thoughts and feelings to parents), see Harris and Glasberg (2003). In addition to good communication, it may be helpful for siblings to learn to label their emotions. This may help children understand their emotions by linking their own feelings of concerns about their sibling to their perceptions of their parents emotional state (e.g., stress about care for every family member). Meanwhile, providing age appropriate

4 explanations about what autism is can help siblings understand and manage their perceptions about why their sibling with an ASD receives extra attention and support (Harris and Glasberg 2003; Gallagher et al. 2006). Parents should do their best to understand what their typically developing children are saying concerning their sibling with an ASD. Furthermore, siblings will feel more supported when parents provide them with clear feedback that what they say has been received and taken into account by their parents. Acknowledgment of siblings feelings will help them feel respected. When determining how to best support siblings, it may be beneficial to consider not only good communication in general and education about autism, but also to consider the demands placed upon siblings as a result of having a brother or sister with an ASD. Do typically developing siblings of a brother or sister with an ASD take on more household and care responsibilities than siblings in families without disabilities? Interestingly, Gold (1993) found that siblings of children with autism report doing less domestic work than siblings of typically developing children. Perhaps this is due to parental fears and guilt about potentially burdening siblings by over-relying on them for help with childcare and a desire to not over-burden siblings with extra housework responsibilities. Parental expectation about sibling responsibilities is one aspect of the parent child relationship, which illustrates that the relationship between each child and parent can influence the sibling sibling relationship. Such aspects of the parent child-relationship should be taken into account, and parental awareness of each individual child s needs in a family constellation can reduce sibling rivalry and bring the family members closer together (Cancro 2008). Bryant and Crockenberg (1980) found that parents who are responsive to their children s behavior are likely to foster prosocial behaviors between their children (Furman and Buhrmester 1985). Support Group Having a child with an ASD in the family not only has the potential to influence sibling relationships and the emotional well-being of siblings, it can also affect the emotional well-being of the parents. Research has found that parents of children with ASDs have higher rates of depression and stress compared to parents who have children with other disabilities and parents with typically developing children (e.g., Hastings 2003b; Hasting et al., 2005; Ross and Cuskelly 2006). Parents need a good support network. Having access to a support network and receiving specific support related to their child yielded great benefits for parents of children with autism (Guralnick et al. 2008). Parent support groups should involve meeting other parents of children with similar conditions. Such meetings offer parents the knowledge, understanding, and acceptance they seek (Banach et al. 2010). Through programs like a family support group or a parent-to-parent group, families have a place to share their joys and concerns, learn lessons to better support their child s needs, exchange information, and generally support each other. Family support groups are good for parents and children. There is evidence that social support might moderate the severity of symptoms exhibited by the child with an ASD and might be related to adaptive coping and adjustment of siblings (Banach et al. 2010; Hastings 2003b; Law et al. 2001; Stoneman 2005). Many non-profit organizations provide support group services for families who have a child with autism, such as the Autism Society of America or the ARC of the United States at state and local levels. Some organizations also provide childcare services so that parents can attend without making babysitting arrangements a potential challenge for many families with children who have disabilities. When parents have access to quality emotional and informational resources, they are better positioned to reach out for help and cope more effectively. Parent Training and Support Parental attitudes about support for each of their individual children are vital for promoting positive sibling relationships. Parents can act as both support agents and agent trainers; however, before getting to this level, parents need the right information and training themselves. Support groups and community agencies are again likely to be a valuable source for these kinds of resources. A program focused on training parents to teach social skills to young siblings can not only promote positive, adaptive behavior, but can also capitalize on the powerful socialization effects of parents and siblings (i.e., parents and siblings are uniquely situated to make a profound impact on a child s development) (Tiedemann and Johnston 1992). Parents may need assistance developing strategies to enhance children s social competencies. Programs exist to aid parents with the endeavor of creating their own intervention plan and can help parents create a custom intervention tailored to their families specific needs. Programs such as these can also help parents understand different intervention approaches, which may help parents overcome the limitations of some existing interventions (e.g., limited ability to generalize from other interventions and maintenance issues; Tiedemann and Johnston, 1992). Parent training is necessary for teaching parents how to appropriately reinforce and maintain sibling efforts to positively interact with their brother or sister with an ASD (Petalas et al. 2009). For example, Lobato and Kao (2002) conducted an integrated sibling parent group intervention for

5 typically developing siblings of children with a chronic illness or developmental disability and their parents. When parents implemented good reinforcement and maintenance strategies, the authors found improved sibling connectedness and found that siblings had a better knowledge of the child s disorder and behavior problems (Petalas et al. 2009). Sibling Play Intervention Play provides the prime social context for children to create reciprocal roles, define power relationships, and facilitate mutual social exchanges (Stoneman 2001). Through trial and error informed by social feedback, typically developing children learn to accommodate their siblings disabilities and facilitate social interaction (Stoneman 2001). However, the siblings role as an agent for social skills training is not without challenges. Research indicates that it is more difficult for typically developing siblings to create and lead play behaviors when their brother or sister s disruptive and negative behaviors are more severe (Bagenholm and Gillberg 1991; Knott et al. 1995; Mascha and Boucher 2006; Strain and Danko 1995). Therefore, an individualized play based social intervention may be an effective strategy for supporting siblings needs. Tsao and McCabe (2010) provided a protocol for parents or early intervention specialists to develop a sibling play intervention focused on supporting proper interactions between a child with autism and a typically developing sibling. The intervention begins by observing the children s play and routines. Early intervention specialists and parents then search for opportunities to use the focal child s preferred toys or activities to create play sessions with specific objectives for both children. The key to success for an intervention such as this requires taking the sibling s motivation into consideration (e.g., the specialist and parents should consider whether the sibling enjoys learning new ways of interacting with the focal child). Motivated siblings can be a significant resource for the family, making the situation less difficult and allowing the family to cope more effectively. Again, siblings can be successful social agents for children with autism. Siblings can facilitate initiations and learn to respond strategically to their siblings (El-Ghoroury and Romanczyk 1999; Tsao and Odom 2006). Siblings adept at selecting activities that actively engage both children, will make more effective play partners than children who select activities that exclude one child or the other (Lobato et al. 1991; Stoneman et al. 1987). Through ongoing interactions, siblings with the social skills to appropriately understand and respond to the needs of their brother or sister with a disability can develop high quality sibling relationships (Stoneman 2005). Interaction training for siblings of children with ASDs may prove to be a valuable approach for an intervention. Such training could potentially enhance the social interactions and communication between siblings and thus, reduce conflict. Continuity of training and periodic reassessment will ensure that siblings are provided with the necessary resources to meet the changing demands as the sibling dyad develops and each child grows older (Petalas et al. 2009). It is possible that skills siblings gain in intervention and sharpened through interactions with their brother or sister can generalize to contexts beyond the sibling sibling relationship. (Mascha and Boucher 2006). For example, Colletti and Harris (1997) taught siblings of children with ASDs behavior modification techniques techniques that could potentially be applied to other relationships and conflict management situations (e.g., relationships with friends and other children at school). A few studies have begun to address the issue of supporting siblings and providing them with the skills and resources they need to be powerful social skill trainers and models for their brother or sister with autism. For example, Celiberti and Harris (1993) taught typically developing siblings behavioral skills to engage their brother or sister in play. Tsao and Odom (2006) taught typically developing siblings how to play more effectively with their brothers (who had an ASD) and found that children with ASDs initiated more interactions with their siblings at the end of the intervention than at the beginning. They also observed more play behaviors between both children suggesting that the children were more socially engaged after the intervention. Parents also mentioned that children played like they were real siblings (e.g., played together and played more often). When siblings see their important role in helping their brother or sister, and see that they are making a positive impact, it is affirming. As a result, showing typically developing siblings how to best enhance their brother or sister s abilities and social skills can potentially boost siblings self esteem, and help them form stronger relationships with each other (Mascha and Boucher 2006). Sibling Support Groups Given the importance of social support from family members, friends, neighbors, professionals, and parent groups, it is possible that social support specifically for siblings may also play an important role in the healthy and adaptive adjustment of siblings (Kaminsky and Dewey 2002). One well-documented program for supporting siblings is Sibshops (Meyer and Vadasy 2007). Sibshops resulted in increased positive feelings about the brother or sister with a disability and siblings acquired useful coping strategies (Johnson and Sandall 2005; Conway and Meyer 2008).

6 Bagenholm and Gillberg (1991) interviewed 60 children between the ages of 5 and 20 who had a brother or sister with autism, cognitive disabilities, or no apparent physical or cognitive disorders. They found that siblings of children with disabilities talked more about their brothers and sisters than siblings of typically developing children. Children in ordinary families do not talk very much about their siblings (p. 304). As a result, Bagenholm and Gillberg (1991) believed that if there is something to talk about good or bad it may be a relief for siblings to have the opportunity to talk about their experiences both at home and with friends and other supportive adults. Simply providing opportunities for siblings to express their feelings is a good start, but a more structured and clinical approach may be even better. Mascha and Boucher (2006) indicated that it might be beneficial to work directly with siblings by helping them explore their thoughts and feelings, including reflecting on their experiences with their brother or sister, their understanding of the disability, and the role of each family member within the family system. Therefore, it is often good practice to utilize a professional counselor when possible. Providing resources and appropriate support to siblings is essential, and can potentially have long-term benefits for both siblings. Siblings of persons with disabilities can their brothers and sisters live dignified lives from childhood throughout adulthood (Meyer and Vadasy 1997). Discussion The majority of brothers and sisters of children with autism function well (Ferraioli and Harris 2010). Research has shown that relationships between siblings when one child has a disability are not identical to the relationships that exist between typically developing siblings (Stoneman 2001). However, having a brother or sister with a disability does not cause maladaptation or pathology in children (Stoneman 2005; Rodrigue et al. 1993). Instead, siblings of children with disabilities engage in a rich and complex set of roles, such as that of teacher, caregiver, modeler, and confidant, which may promote developmental benefits (Stoneman and Brody 1982). Many siblings of children with disabilities successfully achieve mutually acceptable interactional role relationships, artfully crafted to fit their life contexts (Stoneman 2001, 2005). Certainly, this is in keeping with family theories that suggest that families define situations. The use of available resources and the important aspects of a good intervention, as identified in this review, can assist families to not only cope with a stressor event but also adapt and thrive with their unique challenge. On the other hand, the behavioral problems frequently associated with an ASD (e.g., aggression or temper issues) can cause a variety of negative emotions for typically developing siblings. Therefore, there is a clear need for proper support of siblings of children with autism (Mascha and Boucher 2006). Siblings are an integrative component of the family system and are key players shaping the experiences and learning opportunities available to children with special needs (Kresak et al. 2009). It is not always clear what the impact of a disability will be on sibling relationships. There are many factors (e.g., environmental factors) that make studying the effects of an ASD on the sibling relationships difficult (Beyer 2009). Because children on the autism spectrum vary in the severity of their condition, it is difficult to ascertain how the disability impacts a family. The extent of developmental delay could impact how much a family is affected by the disorder. These differences should be taken into account when making decisions about how to support siblings and what kinds of interventions are appropriate for individual families. The role of siblings who have a brother or sister on the autism spectrum, has been underexplored, despite the sibling s potential to significantly enhance family life and foster social skills in children with autism. Efforts should be made to raise parental and professional awareness of the potential issues faced by siblings to promote dialogue in families and between families and professionals. This may prove especially significant later in life, as sibling relationships are often long-lasting relationships. It is recommended that practitioners acknowledge and build on the positive views held by siblings. This may help siblings recognize their personal strengths and abilities, promote positive family relationships characterized by open channels of communication, and provide opportunities for families to bond. Additionally, increasing siblings access to developmentally appropriately information and support that promotes positive perceptions and experiences may have lasting effects on sibling adjustment and sibling relationships (Petalas et al. 2009). Use of resources (e.g., material, informational, and emotional/social resources, etc.) can impact the dynamic functioning of a whole family, including typically developing siblings. Hence, future autism sibling studies should take a life course approach and consider the context of life stages (Beyer 2009), as well as the impact on the family system as a whole. Conclusion Each family member plays an important role in his or her own family system. Siblings are uniquely situated to help

7 children with ASDs and other disabilities. The take-home message of this review is that empowering siblings to be effective intervention partners can potentially yield great benefits for the sibling, the child with a disability, and the greater family constellation. Parents need to utilize the resources and support networks available to them to help them cope with the potential challenges of having a child with a disability. With proper support and resources, parents can ensure the much-needed support of their typically developing children. Parents can also facilitate the training of typically developing siblings, thereby including siblings in the larger intervention plan for the child with an ASD or other disability. Asking what is it like to grow up as a sibling of a child with autism and what can we do to support siblings of children with autism, led to the identification of several important considerations for supporting siblings and designing effective interventions. 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