Write an introduction about?a ‘The Psychological impact of children with Autism spectrum disorder on?siblings’ The first paragraph is about: Autism spectrum disorder. The second paragrap

SIBLINGS OF INDIVIDUALS WITH AUTISM

SPECTRUM DISORDERS ACROSS THE LIFE COURSE

Gael I. Orsmond1* and Marsha Mailick Seltzer2 1Department of Occupational Therapy and Rehabilitation Counseling, Boston University, Boston, Massachusetts

2Waisman Center, University of Wisconsin-Madison, Madison, Wisconsin

In this article, we review the literature on siblings of individuals with autism spectrum disorders (ASD) from a lifespan developmental per- spective, from infancy through adulthood, focusing on the sibling rela- tionship and sibling well-being. We situate this review within the larger body of research on siblings of individuals with developmental disabilities (DD) across the lifespan. We then consider the genetic aspects of ASDs and their implications for siblings. We conclude that there is an evidence of atypical social and communication development in some siblings of children with an ASD during infancy. During childhood and adolescence, siblings describe both positive and negative aspects of their sibling rela- tionship and there is some evidence that siblings of children with an ASD may be at heightened risk for social and behavioral adjustment problems. The limited research on adulthood suggests that lack of closeness in the sibling relationship and social and emotional difficulties may continue. We encourage more attention focused on developmental issues, specifi- cally with respect to samples in narrower age groups and in longitudinal research. Finally, we note the variability in sibling outcomes, and suggest further examination of potential moderating and mediating factors, including genetic predispositions. ' 2007 Wiley-Liss, Inc.

MRDD Research Reviews 2007;13:313–320.

Key Words: siblings; lifespan; sibling relationship; well-being

In this article, we provide a developmental perspective onthe sibling relationship and well-being of siblings of indi- viduals with autism spectrum disorders (ASD). We use the

term ASD to include children with autism, Asperger syn- drome, and pervasive developmental disorders (PDD). All of these disorders share impairments in communication, social reciprocity, and the presence of restricted and repetitive behav- iors [APA, 2000]. We organize this review from a develop- mental perspective, discussing the literature on two topics, sib- ling relationships and sibling well-being, within each life stage, from infancy through adulthood. The term ‘‘sibling relation- ship’’ includes the physical actions and interactions between siblings, as well as the more subjective, cognitive, and affective components of the relationship [Cicirelli, 1995]. Research, therefore, has focused on the dimensions of companionship, affect, and caregiving in the sibling relationships. The term ‘‘sibling well-being’’ includes outcomes that represent well- being according to the age of the sibling, such as social engagement and communication in infancy, behavioral adjust- ment during childhood, and mental health in adolescence and adulthood.

Among all human relationships, sibling relationships typ- ically last the longest. The sibling relationship is also unique in that it is ascribed rather than achieved, and typically one of relative egalitarianism [Cicirelli, 1995]. Nurturance and con- flict in the sibling relationship provide siblings with experi- ences that foster the development of emotional understanding, self-regulation, and a sense of belonging and comfort [Brody, 2004]. Siblings begin as play partners and sources of support through intimate daily contact during childhood. During ado- lescence and young adulthood, siblings experience decreased contact and intimacy as they establish their independent lives. Intimacy in the sibling relationship during adulthood is main- tained through telephone and other forms of communication and through periodic visits. Thus, the sibling relationship in adulthood is more susceptible to change due to factors in the individual siblings’ lives [Cicirelli, 1995]. Finally, during mid- dle and later adulthood, sibling relationships often become more salient, especially when other family and social supports are less available [White, 2001].

The literature on siblings in the general population indi- cates that sibling relationships show considerable continuity throughout childhood and adolescence [Dunn et al., 1994], although more recent research has focused on the personal, interpersonal, and ecological variables that influence sibling relationships [Kramer and Kowal, 2005]. Overall, girls tend to report more affection and intimacy in their sibling relation- ships than boys [Akiyama et al., 1996; Kim et al., 2006], although the sex constellation may also make a difference. In a recent study, sibling intimacy was relatively stable in same-sex dyads from childhood through adolescence, but in mixed-sex dyads intimacy declined from middle childhood through early adolescence and then increased in middle adolescence [Kim et al., 2006]. With respect to parental influences, considerable

Grant sponsor: National Institute on Aging; Grant number: R01 AG08768; Grant sponsor: National Institute on Child Health and Human Development; Grant num- bers: P30 HD03352, R03 HD039185; Grant sponsor: Graduate School of the Uni- versity of Wisconsin-Madison. *Correspondence to: Gael I. Orsmond, Department of Occupational Therapy and Rehabilitation Counseling, Boston University, 635 Commonwealth Avenue, Boston, MA 02215. E-mail: [email protected] Received 20 August 2007; Accepted 22 August 2007 Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/mrdd.20171

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS 13: 313 – 320 (2007)

' 2007Wiley -Liss, Inc.

research supports a positive association between positivity in the parent–child relationship and positive affect and pro- social behavior in the sibling relation- ship [Brody, 1998], although the relative importance of the mother–child versus the father–child relationship remains debated [Kim et al., 2006]. Further- more, children and adolescents who per- ceive that they receive less warm and more negative treatment from their parents than their siblings have greater emotional and behavioral difficulties, especially if they perceive that treatment to be unjust [Brody, 2004].

With these life course patterns and influences on the sibling relation- ship in mind, one additional factor that can influence the life course trajectory of the sibling relationship is the pres- ence of disability in a sibling. Consider- able research has examined how the sib- ling relationship is affected, and whether the well-being of the non-dis- abled sibling is impacted, when one sib- ling has a developmental disability (DD) other than an ASD [see Rossiter and Sharpe, 2001, for a review], but compa- ratively little research has focused on the sibling relationship when one sib- ling has an ASD. Therefore, we begin our review by summarizing the research on sibling relationships in DDs other than ASDs. This research is helpful in understanding how the presence of cog- nitive impairment affects sibling well- being and sibling relationships. Most individuals with ASDs have cognitive limitations, but they also have social and behavioral characteristics that might challenge the sibling relationship, such as impairment in social reciprocity and the presence of rigid behaviors [APA, 2000]. Thus, in understanding how ASDs affect the sibling relationship, it is helpful to contextualize our review within the larger body of research on siblings of individuals with DD other than ASDs.

SIBLINGS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES

In reviewing the research on sib- ling relationships when one sibling has a DD, Stoneman [2001, 2005] concluded that there are high levels of interaction when one sibling has a DD, especially during childhood, although some of this interaction is likely due to the expanded childcare roles that non-disabled sib- lings, especially sisters, often play. A meta-analytic review of the effects on the sibling relationship and sibling well- being came to a more negative conclu-

sion [Rossiter and Sharpe, 2001]. On the basis of 25 studies on siblings of individuals with DD, Rossiter and Sharpe concluded that there was a stat- istically significant but small negative effect on the psychological functioning of these siblings (depression, anxiety, and behavioral adjustment in terms of internalizing and externalizing behav- iors). The effect varied at different stages of the life. The effects for siblings during childhood and adolescence were negative, although only the effect size for childhood was significant. The effect size for siblings during adulthood was positive but not significantly different from zero. Rossiter and Sharpe com- ment on these age-related findings, pointing out that only two studies were included in the analysis regarding adult siblings, and pondering whether the findings reflect effects due to self-report (which tend to be more positive than parental reports across ages) versus pa- rental report (which is more common in studies on children and adolescents). Rossiter and Sharpe [2001] also specu- late that the effect on siblings during adulthood may be less negative because of the decreased influence of the birth family on adults and also possibly because of the development of more mature and effective coping strategies. These observations of age-related differ- ences in the effects of the sibling rela- tionship underscore the importance of a life course perspective when assessing the impact of a sibling with a disability.

Our own research substantiates that sibling relationships are relatively positive during adulthood, and also pro- vides considerable information regard- ing the factors that affect sibling rela- tionships during this life stage [see Selt- zer et al., 2005, for a recent review]. We have found that non-disabled sib- lings are often considered a member of the social support network of adult brothers and sisters with a DD [Krauss et al., 1992], and that the sibling who is most involved has a considerable amount of contact and relatively posi- tive relationships with the brother or sister [Krauss et al., 1996], especially in comparison with siblings who have a brother or sister with mental illness (MI) [Seltzer et al., 1997]. Siblings of adults with DD generally provide higher levels of emotional rather than instrumental support [Seltzer et al., 1991], and provide more emotional support than siblings of adults with MI [Greenberg et al., 1999].

We have also found that sibling gender has important effects on sibling

caregiving and involvement. The most involved sibling is likely to be a sister [Seltzer et al., 1991], and she is likely to have an equally close relationship if she has a sister or brother with DD [Ors- mond and Seltzer, 2000]. Brothers’ sib- ling relationships are conditioned by the gender of their sibling; brothers with a brother with DD have closer relation- ships than brothers with a sister with DD. Furthermore, there is considerable variability regarding expectations of future caregiving roles [Krauss et al., 1996]. Although almost 20% of siblings expected to have their sibling with DD live with them in the future [Krauss et al., 1996], when followed up at a later point in time only 10% of siblings actually coresided [Freedman et al., 1997]. Finally, we found that when the sibling with DD moves out of the pa- rental home to a community residential living arrangement, non-disabled sib- lings tend to be less worried about their brother or sister’s future and have increased contact with their sibling, when compared with siblings when the brother or sister continues to live at home [Seltzer et al., 2001]. Thus, our research indicates that during adult- hood, sibling relationships are relatively positive but are more likely to involve emotional support than direct caregiv- ing. Furthermore, gender of both sib- lings and living arrangement of the brother or sister with DD (in the paren- tal home, elsewhere) are important fac- tors contributing to sibling closeness.

We now turn to the literature on siblings of individuals with ASDs, focus- ing on the sibling relationship and sib- ling well-being. However, first we begin with a brief review of the genetic basis of ASDs.

THE GENETIC BASIS OF ASDS We need to consider both genetic

and environmental effects when exam- ining the impact of ASDs on siblings. There is a general consensus that there is a genetic basis to autism [see Rutter, 2000; Wassink et al., 2004; for reviews]. Siblings of individuals with an ASD are at greater risk for ASDs themselves as well as a range of related impairments. This is termed the ‘‘broader autism phe- notype’’ (BAP) [Baurminger and Yir- miya, 2001]. Concordance rates for monozygotic twins range from 60 to 96% [Bailey et al., 1995; Ritvo, 1985] and from 0 to 24% for dizygotic twins [Bailey et al., 1995; Ritvo, 1985]. Re- currence rates (meaning the occurrence of an ASD in another immediate family member) for ASDs in siblings have con-

314 MRDD Research Reviews DOI 10.1002/mrdd � ASD SIBLINGS � Orsmond and Seltzer

sistently been reported in the 3–5% range [Micali et al., 2004]. Therefore, any consideration of the impact on a non-diagnosed sibling who has a brother or sister with an ASD must take the BAP into account when interpret- ing the data, and acknowledge its potential to increase the vulnerability of siblings who do not have an ASD. Thus, it is ultimately not possible to fully differentiate BAP (i.e., genetic) factors from the reactive effects of growing up with a sibling with an ASD (i.e., environmental factors).

PRIOR REVIEWS OF THE WELL-BEING OF BROTHERS AND SISTERS OF INDIVIDUALS WITH AN ASD

There are no prior reviews of research on the sibling relationship when one sibling has an ASD. How- ever, there have been prior reviews on the well-being of such siblings. The most recent review on the cognitive and psychiatric outcomes of siblings of individuals with an ASD is a meta-anal- ysis and methodological critique of 18 studies by Yirmiya et al. [2001], which concluded that there is insufficient data to support the notion that siblings of children with an ASD are at increased risk for negative cognitive and psychiat- ric outcomes, with the exception of the increased genetic risk of ASDs (including the BAP). They note several limitations in the literature that preclude firm conclusions: the relatively small number of studies that are comparable to one another; the small samples stud- ied, which makes it difficult to observe recurrence if rates are low; and the lack of comparison groups that also have genetic liabilities such as siblings of individuals with learning disabilities or psychiatric disorders.

Other reviews include a summary of the research by Bauminger and Yirmiya [2001] and a comprehensive review by Lainhart [1999] on the pres- ence of psychiatric problems in siblings (and other relatives) of individuals with an ASD. Lainhart’s review concluded that first degree-relatives of individuals with an autism (including siblings) are at increased risk of major depression, but the findings for other psychiatric disorders are mixed. The current review differs from these prior ones in that we examine both the sibling relationship and sibling well-being, and attempt to understand sibling outcomes in siblings of individuals with an ASD according to life stage, from infancy through adulthood.

SIBLINGS OF INDIVIDUALS WITH AN ASD IN INFANCY

A relatively recent development in the research literature on siblings of individuals with an ASD has been a focus on infant siblings. Although a pri- mary purpose of this research is to identify atypical patterns of develop- ment that may be early markers for ASDs, these studies also provide infor- mation regarding the development of such siblings during the early years of life. In line with the skills of infants, these studies have focused on the devel- opment of social engagement and com- munication [Goldberg et al., 2005; Zwaigenbaum et al., 2005; Mitchell et al., 2006; Yirmiya et al., 2006].

At a very young age, 4-month- old siblings of children with autism did not differ from siblings of typically developing (TD) children on most measures of early social engagement, such as infant gaze, positive or negative affect when the mother stopped inter- acting with the infant, and their response to their mother when she started inter- acting with them again. However, their interactions with their mothers were less synchronous when they began the interaction, and they showed more neu- tral affect and were less likely to cry when their mother stopped interacting with them [Yirmiya et al., 2006]. Inter- estingly, more infant siblings of children with autism responded to their name being called than siblings of TD chil- dren. In another study, at 12 months of age, atypical language skills, imitation, and responsiveness to social and nonso- cial stimuli were observed, which were later found to be related to the develop- ment of an ASD in some siblings [Zwaigenbaum et al., 2005].

At age 14 months, Yirmiya et al. [2006] found no differences between siblings of children with an ASD when compared with siblings of TD children on cognitive or motor development, but siblings of children with an ASD showed delayed requesting behaviors. Goldberg et al. [2005] reported similar findings regarding language and early social communication behaviors. At 14–19 months, infant siblings of chil- dren with an ASD showed significantly less eye contact, fewer gestures, less turn-taking, less pointing and showing behaviors, and fewer requesting behav- iors than siblings of TD children. Gold- berg and colleagues also found that sib- lings not later diagnosed with an ASD performed more similarly to siblings later diagnosed with an ASD on these social and communication behaviors

than they did in comparison to siblings of TD children.

In contrast, Mitchell et al. [2006] found that at 12 months, siblings not later diagnosed with an ASD were simi- lar to siblings of TD children on lan- guage and communication skills, but that by 18 months siblings of children with an ASD produced fewer play- related gestures than the TD group. Differences across these studies on infant siblings of children with an ASD likely arise because of the small samples, which may not be representative of the population, and differences in the types of measures used.

These infant sibling studies sug- gest some evidence of difficulties in social and communication behavior at a young age, even in siblings who are not later diagnosed with an ASD. The authors of these infant sibling studies argue that these developmental differen- ces are due to genetic liability, although Yirmiya et al. [2006] acknowledge that the findings may be due in part to envi- ronmental effects. Social relationships and mother–child interactions in the family could be affected by the presence of the sibling with an ASD or the pres- ence of BAP characteristics in mothers, independent of the BAP characteristics in siblings.

SIBLINGS OF INDIVIDUALS WITH AN ASD IN CHILDHOOD AND ADOLESCENCE

Sibling Relationships During childhood, siblings of

children with an ASD spend a consider- able amount of time with their brother or sister. In an observational study of siblings ages 2–12, siblings spent on av- erage 40 minutes out of every hour to- gether when observed at home, and engaged in a variety of activities to- gether, including pretend and rough and tumble play [Knott et al., 1995]. However, the siblings of children with autism spent less time together than sib- lings of children with Down syndrome (DS), and their brother or sister with autism responded less positively to ini- tiations by the sibling. Another study using self-reports from siblings found that siblings of brothers and sisters with autism ages 7–12 expressed primarily positive feelings about their sibling rela- tionship [Rivers and Stoneman, 2003].

The majority of studies on sib- lings of children with autism have grouped together siblings spanning the childhood and adolescent years, obscur- ing differences between these stages of

MRDD Research Reviews DOI 10.1002/mrdd � ASD SIBLINGS � Orsmond and Seltzer 315

life. These studies agree that siblings describe the relationship with the brother or sister with autism in positive terms, although some negative aspects are noted, such as embarrassment or and disruptive behavior by the brother or sister with an ASD. Several studies show the similarity between sibling relationships when a sibling has an ASD when compared with a DD other than an ASD in terms of qualitative descrip- tions of the sibling relationship by sib- lings [Fisman et al., 1996, 2000; Pilow- sky et al., 2004].

Roeyers and Mycke [1995] found no differences between siblings ages 8 and 14 of children with autism when compared with siblings of children with DD, but siblings of children with autism reported more acceptance and less verbal aggression compared with siblings of TD children. In a study by Kaminsky and Dewey [2001], siblings ages 8–18 of children with autism reported greater admiration of and less competition and conflict with their brother or sister than siblings of TD children, and were simi- lar to siblings of children with DS in these aspects of the sibling relationship. However, they reported lower levels of closeness and intimacy than siblings of children with DS.

In terms of activities that siblings do together, in a qualitative study, almost half of the siblings ages 7–20 mentioned the good nature of their brother or sister with autism and that they played and had fun together, although feelings of embarrassment were also mentioned as well as concerns for the future of their brother or sister [Mascha and Boucher, 2006]. The most frequent activities they engaged in were playing together, watching television, and spending time outside.

Negative aspects of the relation- ship have also been identified by sib- lings. Some siblings reported greater feelings of embarrassment than siblings of children with DD or no disability [Roeyers and Mycke, 1995]. In a study by Ross and Cuskelly [2006], 84% of siblings (ages 8–15) reported aggression by the brother or sister with autism in their sibling interactions, which pro- voked feelings of anger. B€agenholm and Gillberg [1991] found that siblings ages 5–20 of children with autism played and interacted less with their brother or sister than siblings who had a brother or sister with DD. Furthermore, siblings of children with autism reported less favor- able attitudes toward their brother or sister and saw their brother or sister’s role in the family more negatively than

siblings who had a brother or sister with DD. More than half of the siblings of children with autism were unable to explain their brother or sister’s disability, and one-third said they could only talk with someone outside their family about their brother or sister’s condition. They also reported problems with de- structive behavior in their brother or sister, and were concerned about their brother or sister’s future.

In summary, siblings during child- hood and adolescence describe positive aspects of their sibling relationship, including siblings as activity partners, greater admiration, and less competition and conflict. There are also significant indications, however, that sibling rela- tionships are less close when the brother or sister has an ASD than when they have DS or a DD other than an ASD. Siblings also are concerned about embarrassment, destructive behavior, social isolation, and their brother or sis- ter’s future.

Sibling Well-Being Studies examining sibling well-

being have either included siblings spanning the childhood and adolescent years, or only focused on adolescent siblings. Notably, no studies of sibling well-being specifically during childhood have been conducted.

From a genetics perspective, sev- eral researchers have studied social and emotional skills associated with the BAP. Dorris et al. [2004] found that siblings ages 7–17 of children with Asperger syndrome showed impairment in facial emotion recognition compared with siblings of TD children. Constan- tino et al. [2006] found evidence for subtle social impairments in male sib- lings ages 4–18 of children with autism. Using his Social Responsiveness Scale, siblings from multiple-incidence families were rated as having the highest degree of social impairment, followed by sib- lings with only one brother or sister with autism. Siblings of children with a variety of other psychological or behav- ioral disabilities had the lowest scores.

Further evidence of social difficul- ties comes from a study by B€agenholm and Gillberg [1991] wherein 35% of the siblings age 5–20 reported feeling lonely and that they had no friends. In con- trast, sibling of children with mental re- tardation in this study did not report the same degree of loneliness and sib- lings of children without disabilities reported no feelings of being lonely. Other researchers have found that sib- lings whose brother or sister had ASD

are equally or more socially competent than siblings of children with DS or no disability [Gold, 1993; Rodrigue et al., 1993; Kaminsky and Dewey, 2002; Verte et al., 2003]

The research examining psycho- logical well-being in this age range has focused on the presence of clinical psy- chiatric diagnosis as well as behavioral adjustment. Pilowsky et al. [2004] found no differences in rates of clinical diag- noses (including ADHD, ODD, and anxiety) between siblings ages 6–15 of children with autism, MR of unknown genetic etiology, and developmental lan- guage disorder. Gold [1993] studied sib- lings of boys with autism and found that they scored significantly higher on a screening measure of clinical depression than siblings of TD children.

A relatively large number of stud- ies have examined sibling behavioral adjustment during childhood through adolescence using parental report, fre- quently examining internalizing and externalizing types of behavior problems with the Achenbach Child Behavior Checklist [CBCL; Achenbach and Resclora, 2001]. Studies of children and adolescents tend to report higher levels of adjustment problems in siblings of children with an ASD than in siblings of children with no disability, with mixed findings as to how siblings of children with an ASD compare with siblings of children with other DDs such as DS.

Smith and Perry [2005] reported that 36% of siblings ages 6–16 of a brother or sister with an ASD had bor- derline to clinically significant internal- izing behavior problems and 20% had externalizing problems. Similarly, Verte et al. [2003] reported that siblings ages 6–16 of high functioning children with autism had significantly more internaliz- ing and externalizing behavior problems than siblings of TD children. Fisman et al. [1996] reported that siblings ages 8–16 of children with PDD had more internalizing behavior problems accord- ing to both parent and teacher report on the CBCL than siblings of children with DS or no disability. Externalizing behavior problems were elevated only according to parent report. Three years later, siblings of children with PDD no longer scored higher in internalizing behaviors according to parental report, but continued to exhibit higher levels of externalizing behaviors [Fisman et al., 2000].

Similarly, Rodrigue et al. [1993] found that siblings with a mean age of 9 years had significantly more internal- izing and externalizing behavior prob-

316 MRDD Research Reviews DOI 10.1002/mrdd � ASD SIBLINGS � Orsmond and Seltzer

lems than siblings of TD children, but not more than siblings of children with DS. Hastings [2003a,b] reported on the adjustment of siblings ranging in age from 4 to 16 years using the Strengths and Difficulties Questionnaire (SDQ). Compared to normative data, the sib- lings of children with autism had more peer problems, more overall adjustment problems, and lower levels of prosocial behavior. B€agenholm and Gillberg [1991] used the Rutter scales with sib- lings ages 5–20 and found that siblings of children with autism scored higher on the inattention/hyperactivity and conduct problems scales (externalizing types of behavior problems) than did siblings of TD children, but similar to siblings of children with DD (including DS). Almost all of these authors empha- size that although scores on the mea- sures of behavior adjustment may be elevated in siblings of children with an ASD, they are generally within the non-clinical range.

In several other studies, siblings of children with an ASD were not found to be at greater risk of adjustment prob- lems. Ferrari [1984] found no differ- ences in behavior problems on the CBCL between siblings ages 6–13 of brothers with PDD, diabetes, and no health or developmental problems. Both Gold [1993] and Kaminsky and Dewey [2002] found no differences in adjust- ment problems (as measured by the CBCL) between siblings ages 7–18 of children with autism and siblings of TD children (in both studies) and DS [Kaminsky and Dewey, 2002]. Two additional studies did not use compari- son groups, but examined adjustment problems in siblings in comparison to normative data. Mates [1990] found that home, school, and academic adjustment in siblings ages 5–17 of children with autism were not significantly different from normative samples. Ross and Cuskelly [2006] reported than mean scores of internalizing and externalizing behavior problems as measured by the CBCL by parent report were within the non-clinical range for a sample of sib- lings ages 8–15. Forty percent of the siblings were experiencing adjustment problems. With a larger sample of fami- lies participating in ABA therapy, Hast- ings [2003b] reported that siblings were reported as having fewer problems on the SDQ compared with the normative data.

Positive outcomes have been con- sistently noted in the domains of sibling self-concept and self-competence. Sev- eral authors have found that siblings of

children with an ASD report positive self-concept similar to norms [Mates, 1990] or comparison groups of siblings of TD children or children with DD or DS [Ferrari, 1984; B€agenholm and Gill- berg, 1991; Rodrige et al., 1993]. Simi- larly, Verte et al. [2003] found that self- concept did not differ for younger sib- lings ages 6–11, but that adolescent female siblings age 12–16 of children with high-functioning autism (HFA) had a more positive self-concept than ado

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