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Social Work in Mental Health

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The Impact of Autism on Siblings

Suzannah J. Ferraioli MS & Sandra L. Harris PhD

To cite this article: Suzannah J. Ferraioli MS & Sandra L. Harris PhD (2009) The Impact of Autism on Siblings, Social Work in Mental Health, 8:1, 41-53, DOI: 10.1080/15332980902932409

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Social Work in Mental Health, 8:41–53, 2010 Copyright © Taylor & Francis Group, LLC ISSN: 1533-2985 print/1533-2993 online DOI: 10.1080/15332980902932409

WSMH1533-29851533-2993Social Work in Mental Health, Vol. 8, No. 1, October 2009: pp. 0–0Social Work in Mental Health

The Impact of Autism on Siblings

S. J. Ferraioli and S. L. HarrisThe Impact of Autism on Siblings

SUZANNAH J. FERRAIOLI, MS and SANDRA L. HARRIS, PhD Douglass Developmental Disabilities Center, Rutgers, The State University of New Jersey,

New Brunswick, New Jersey, USA

We have summarized the research on the impact of the behavior a brother or sister with an autism spectrum disorder (ASD) on typically developing siblings across the life cycle. The siblings’ cognitive development and emotional/affective development influence how they perceive and interpret the behavior of the child with an ASD. Similarly, the intellectual ability, behavior, and degree of interpersonal access of the child with ASD impacts the relationship between the two children, as does the response of parents to the needs of all the children in the family. These chal- lenges continue into adulthood with the typically developing brother or sister often feeling an ongoing sense of responsibility for the welfare of the sibling with ASD. The majority of siblings of children with ASDs function well as children, adolescents, and adults.

KEYWORDS Autism, siblings, life cycle

Because of the impact of a child with autism on the functioning of the entire family, the concept of the family life cycle is useful to people who study the experience of people with autism spectrum disorders (ASDs) and their fam- ilies (e.g., Harris, 1987; Harris, Boyle, Fong, Gill, & Stanger, 1987). The pri- mary objective of the present special issue on the family life cycle is to consider the impact of the special needs of a person with an ASD on the normative life cycle events of the family. Our focus in the present article is on siblings and it seems appropriate to approach that question in part by reflecting on how the life cycle events of the typically developing child

Address correspondence to Suzannah J. Ferraioli, Douglass Developmental Disabilities Center, Rutgers, The State University of New Jersey, 151 Ryders Lane, New Brunswick, NJ 08901, USA. E-mail: [email protected]

42 S. J. Ferraioli and S. L. Harris

interface with her understanding of the child with an ASD. Siblings may be older or younger than the child with an ASD and vary widely in the number of years they are separated in age. We therefore elected to approach this topic from the point of view of how the sibling’s life cycle events are related to their changing perspective on their relationship to the child on the spec- trum as well as the personal psychological vulnerability some of them may encounter.

A word about terminology is in order. We use the term “autism spec- trum disorder” to include autistic disorder, Asperger’s disorder and perva- sive developmental disorder not otherwise specified. When the author of an article we cite uses the term “autism” or “autistic” we honor that author’s preference in discussing the article.

The child’s understanding of ASD depends in large part on her or his level of cognitive development (Glasberg, 2000). Piaget (1929) wrote that children gain their understanding of the world around them through a developmental lens and that as they mature their comprehension shifts to take into account increasingly abstract knowledge. For the 3-year-old, the 10-year-old, and the 25-year-old the impact of an autism spectrum disorder on a brother or sister, on themselves, and on the family changes as the child’s cognitive skills grow more mature.

A child’s affective state can also have an impact on how information about ASDs or physical illnesses is processed. For example, in the case of diabetes, Carandang, Folkins, Hines, and Stewart (1979) observed in an early study that the siblings of children with diabetes demonstrated a lower level of cognitive understanding of diabetes than would be suggested by their general cognitive development. Recently, Glasberg (2000) found that siblings of children on the autism spectrum may have a more cognitively immature understanding of the causes of autism than one would expect based on their overall level of cognitive functioning. Piaget (1929) sug- gested that emotionally sensitive topics may be more difficult to process cognitively than those that are not emotionally laden.

Thus, a child’s understanding of an ASD is based in large part on her or his level of cognitive function, but can also be influenced by affective fac- tors. To appreciate how this conceptualization impacts the life cycle events of the sibling it is useful to look at the functioning of typically developing children across the Piagetian stages of cognitive development. Until the age of about 7 years, children are in what Piaget (1929) called the preopera- tional stage. During these years the child’s thinking is not based on logic, but on their concrete experiences. Abstract terms such as “autistic disorder” or “genetically transmitted” are not meaningful. Autism is defined by what they see and hear. That a brother has an ASD may mean that he rides a small yellow bus to school, does not speak, or does not play. There is a good chance that at this age the typically developing child believes he or she can “catch” autism (Glasberg, 2000).

The Impact of Autism on Siblings 43

The concrete operational stage is a Piagetian concept (1929) describing how a child processes cognitive information between the ages of 7 and 11 years of age. This is a transitional phase in that children still develop their understanding of the world through their direct experience, but they are now also capable of linking these experiences together in a logical order.

Finally, in the formal operational stage beginning at about age 12 years, children are able to think abstractly about what they personally experience as well as to form abstract concepts even in the absence of direct experi- ence (Piaget, 1929). For example, although they cannot see DNA they can understand its role in human development and grasp the notion that a genetic process may be implicated in some cases of ASDs.

Describing these developmental changes in cognitive functioning is intended to help the reader appreciate the impact of having a brother/sister with an ASD on the typically developing child at different ages. In the mate- rial that follows we discuss in some detail the empirical research on how children of different ages understand autism spectrum disorders and the impact of their brother’s or sister’s behavior on the life cycle events of the typically developing child.

IMPACT OF GENETIC FACTORS

The term “autism spectrum disorders” reflects the wide variation that occurs among people on this spectrum. Some people with an ASD diagnosis may have average or higher intelligence, while others may have an intellectual disability along with the characteristics of autism. Similarly, some people with an ASD diagnosis have relatively mild symptoms and others may have very substantial impairments in social, cognitive, and behavioral domains. Having a brother or sister who falls at different points on this spectrum will certainly have an impact on the sibling experience. Although it is essential to look at the impact of the relationship between the child on the spectrum and the typically developing sibling to appreciate the experience of living with an ASD, it is also important to recognize that genetic factors may influ- ence the development of siblings. As Rutter (2000) noted, in many instances there is a genetic basis for ASDs. Not only does genetic transmission play a factor in a significant portion of people who receive a diagnosis of an ASD, but some siblings may also qualify for an ASD diagnosis and other siblings will show fewer and/or milder symptoms that are related to an ASD. This is known as the “broader autism phenotype” (BAP) (e.g., Folstein & Rutter, 1977) and is reflected in language or social delays that do not reach crite- rion for an ASD diagnosis, but have impact on development (e.g., Sullivan et al., 2007). This BAP may render some siblings more vulnerable to psy- chological challenges than are their peers who do not display this geneti- cally based pattern.

44 S. J. Ferraioli and S. L. Harris

SIBLING RELATIONSHIP

Although there is evidence for some general trends in sibling relationships when one child is typically developing and the other has a disability, the findings are mixed. More optimistic research cites that children between 6 and 15 rate their relationships with their siblings positively (McHale, Sloan, & Simeonsson, 1986). In the McHale et al. sample no differences were observed in the ratings made by children with a sibling on the autism spec- trum and those made by children with a sibling with Down syndrome. Other researchers have reported less positive experiences for the siblings of children with ASD than youngsters with other developmental disabilities. For example, Kaminsky and Dewey (2001) found that, compared with sib- lings of individuals with Down syndrome, the relationships between chil- dren with autism and their siblings were characterized by less intimacy, prosocial behavior, and nurturance. Such non-intimate relationships have also been evidenced in siblings of children with developmental disabilities in general (Begun, 1989), and may result from the atypical quality and quantity of social interactions. Children with autism and their siblings reportedly spend less time together than either siblings of children with Down syndrome or siblings in a normative sample (Knott et al., 1995). In addition, the time they do spend together is not qualitatively comparable to interactions between typical siblings. Children with ASDs frequently fail to respond to social interactions, or they may respond in an atypical manner that is difficult for a sibling to interpret. Knott and colleagues (1995) also found that children with autism in their sample responded less positively to siblings than children without autism.

Having a sibling with ASD may exact varying effects on different children. A large body of research has reported positive or absent effects of the presence of a child with autism on a sibling’s adjustment. Macks and Reeve (2007) describe an enhanced self-concept in these siblings compared to the sib- lings of typical children, which included positive views of the siblings’ own behavior, intelligence, academic performance, and anxiety. Other studies found no adjustment differences between siblings of children with autism as compared to siblings of typical children (Hastings, 2003a; Hastings, 2007) and siblings of children with Down syndrome (Hastings, 2007; O’Kelly, 2007). The ability for a child to successfully adjust may be moderated by his or her access to social support and by the severity of the sibling’s autism (Hastings, 2003b).

There have also been some documented negative effects of having a sibling on the autism spectrum. On measures of behavior problems and prosocial behavior, mothers of children with autism reported more negative outcomes for their typically developing children than the mothers of typical siblings (Hastings, 2003a). Poor adjustment outcomes have also been observed in comparison to the siblings of children with other developmental

The Impact of Autism on Siblings 45

disabilities (Fisman, Wolf, Ellison, & Freeman, 2000; Rossiter & Sharpe, 2001). The presence of a sibling with a disability may also be associated with increased risk for internalizing behavior, such as depression and anxi- ety (Rossiter & Sharpe, 2001).

With these general trends in mind, we will now examine the relation- ships and challenges specific to siblings as they progress through the devel- opmental stages.

The Early Years: Preschool to Age 6 Years

During the preschool years siblings are generally unable to form a clear pic- ture of ASD, although children as young as three will realize that something is different about their sibling with a disability. The majority of the research on the development of the understanding of illness follows the develop- mental stages of Piaget’s model (Bibace & Walsh, 1980; Glasberg, 2000). According to Piaget, children in the preoperational stage understand the world according to their immediate experiences. At this level, personal con- tact with such experiences are critical for the development of cause and effect. This may help explain why very young children may understand the implications and causes of physical, but not mental disability (Diamond & Hestenes, 1996; Glasberg, 1999; Smith & Williams, 2004). By three years old, most children have experience some kind of physical illness, which they can later use to relate to the sickness of others. However, for most children a sibling with ASD is the first exposure they have to a person who has a “mental illness.” Siblings at this age are therefore likely to create explana- tions of mental disability that fall into their existing schemas. For example, Diamond and Hestenes (1996) asked 3- to 6-year-olds to explain the causes of various non-physical disabilities; most children indicated physical descriptions (e.g., “She fell on her head.”). Children may also overgeneralize their knowledge of physical disability to mental disability. For example, children in one study described both cognitive and physical limitations of children with learning disabilities (Smith & Williams, 2001). The absence of contagion is also not well understood at this age (Bibace & Walsh, 1980), and preschoolers may worry that they contributed to or can catch their sibling’s ASD.

Misunderstandings about the causes and effects of ASD can abound at this age, and having a sibling with an ambiguous disability is associated with poorer adjustment outcome (c.f. Macks & Reeve, 2006) than the pres- ence of a sibling with a more concrete disorder. Additionally, more positive adjustment outcomes are strongly associated with the sibling’s coping strategies, rather than the severity of the sibling’s disability (Macks & Reeve, 2006). Therefore, it is important for parents to provide adequate, yet developmen- tally appropriate, information on ASDs to very young children. Some par- ents may be wary of overwhelming their children; in fact, parents generally

46 S. J. Ferraioli and S. L. Harris

overestimate their children’s understanding of ASD (Glasberg, 2000). To protect against false explanations, it may be prudent to expose preschoolers to the basics of the disorder.

Except in constellations in which the child with ASD is much younger, this is a time when play and behavior are likely to be of primary interest to the typical sibling. Stoneman (2001) reports high levels of interaction between a typical siblings and children with developmental disabilities dur- ing childhood. However, the nature of ASD may present some challenges to the social relationship between siblings. Typical children may experience frustration with rejected or ignored social advances, especially if they do not understand the core social and communication deficits of ASD. In the litera- ture, more role-symmetrical play is enhanced by higher functioning levels of the child with the disability (Stoneman, Brody, & Davis, 1987). The tradi- tional absence of imitation, functional play, and imaginative play may make it hard to engage with a brother or sister with a moderate or severe disabil- ity. At this age, being socially reinforced during interactions poses a signifi- cant challenge to the child with ASD, but also to the typical sibling. Teaching siblings very basic play-related skills (e.g., getting the child’s attention, delivering clear commands, reinforcement) may enhance the likelihood that their interactions with a brother or sister with ASD will be fulfilling for both children.

Behavior problems are also likely to be extremely salient to 3- to 6-year-olds. Externalizing behavior, such as aggression, disruption, and ste- reotypy are liable to catch the attention of very young children. Aggression can be a significant concern from an emotional and a safety perspective. Siblings may not understand aggressive behavior and frequently create rationalizations, such as “he doesn’t like me” or “he is mad at me” to explain it. Children may also be fearful of their siblings who engage in aggressive behavior; this can be extremely important for their well being considering conflict in sibling relationships has been negatively related to adjustment in the literature (Stormshak et al., 1996). Although it is not dangerous, stereo- typy may also be a confusing behavior for young children to interpret. Despite behavioral challenges, siblings at this age have reported to be gen- erally satisfied with their relationships with their brothers and sisters (Rivers & Stoneman, 2003).

In some cases, siblings this young may start to take on a care-taking role to a child with ASD. Preschoolers’ interactions with their siblings have been rated as more nurturing than the interactions between typical siblings (Lobato, Miller, Barbour, Hall, & Pezzullo, 1991). Siblings may help look after younger brothers and sisters, or they may adopt the “older sibling” role, despite being chronologically younger. These role-shifts may partially explain some of the findings of enhanced self-perception in the siblings of children with ASD, although no studies have empirically examined this relationship.

The Impact of Autism on Siblings 47

Parents play an important role in moderating the relationships between their typically developing children and the sibling with ASD. Preschoolers spend a significant amount of time at home, and parents are the most salient people in their lives. Having a child with ASD demands ongoing parental involvement, and typical siblings may feel jealousy or resentment because of parents’ divided attention (Howlin, 1988). Additionally, parental characteristics, such as marital stress, have been shown to moderate the strength of the relationship between children with ASD and their siblings (Rivers & Stoneman, 2003).

Older Children: Ages 7–11

Children in the concrete operational stage can draw information from past and present events to make sense of the world. Biological mechanisms of illness become critical to the understanding of both physical and mental ill- ness (Smith & Williams, 2004), but children may still rely on biological explanations for socioemotional disorders. At this stage, children also start to differentiate between physical and socioemotional sequelae of mental disorders (Smith & Williams, 2001). Serafica and Sweazy (1982) found sig- nificant maturation in children of this age in their ability to understand descriptions, treatment, and prognosis of learning disabilities.

Older children and preteens have demonstrated a generally good understanding of autism (Ross & Cuskelly, 2006). They can identify the con- stellation of deficits associated with autism and comprehend the cognitive and social implications of having a diagnosis. Interestingly, in one study of this age group, an understanding of autism was not associated with adjust- ment (Ross & Cuskelly, 2006).

The relationships between children and their siblings with ASD are still generally positive at this age, but begin to change over time such that older children report less satisfaction with these relationships (Rivers & Stoneman, 2003). This trend may be explained by a number of factors. First, a develop- mental “widening of the gap” may occur. When a sibling is very young, the developmental difference between him and his brother is likely to be mini- mal. Both children may enjoy similar toys, games, and may even use similar communicative strategies. As the sibling ages he follows the typical devel- opmental trajectory, while the child with ASD makes small or no develop- mental gains (i.e., the “gap”). Indeed, larger age differences correspond with more conflicted relationships in the literature (Begun, 1989). As an older child, a sibling may feel the desire to engage in more complex behav- ior with a brother or sister with ASD; an inability to do so can foster embar- rassment, anger, and frustration.

Second, satisfaction with relationships is moderated by certain worries in preadolescent children. These may include abstract concerns that are more typical of this age group, such as worries about the sibling’s future,

48 S. J. Ferraioli and S. L. Harris

perceptions of parental favoritism, and feelings of rejection (McHale, Sloan, & Simeonsson, 1986). Last, older children generally develop meaningful relationships with other peers and will spend more time with them than with a sibling.

With a mature understanding of the implications of autism, older children face an interesting mix of sophisticated and child-like concerns. In a study of one sample of children (mean age = 10.5 years), participants reported having fun playing with their sibling with ASD, but expressed concerns about embarrassment, and their sibling’s future (Mascha & Boucher, 2006). Children in another study reported aggression as the most common stressor to their relationships with their siblings with ASD, and the most commonly cited coping strategy was “wishful thinking” (Ross & Cuskelly, 2006).

As peers become important players in their lives, siblings face a new set of concerns. The child with ASD’s maladaptive behavior often becomes central to the sibling’s appraisal. Some take on a protector role, defending the child with ASD from bullying or teasing. Others may experience embar- rassment or resentment, if behavior problems limit potential family activi- ties. Because siblings are still dependent in many ways, the interplay between the child, the sibling, and parents is very important. The behavior and needs of a child with ASD may restrict a sibling’s ability to have friends over or be transported to participate in other activities. Parents may also rely on siblings to baby-sit their brothers and sisters well beyond the age at which they would care for a typically developing sibling.

Children who understand ASD as a lifelong disorder may start to think about the long-term implications for their sibling. They understand that their brothers and sisters may not get married, get a job, or live on their own. However, concerns about their sibling’s future are still minimal at this age, and a full understanding of the impact of ASD on the entire family has not yet matured. In general the preadolescent group tends to deal mainly with personal worries (e.g., embarrassment, inequity), but they start to wrestle with concerns about the sibling with ASD as they approach the teenage years.

The Teenage Years

The adolescent brother/sister of a person with autism (Glasberg, 2000) has the cognitive capacity to understand the possible causes of an ASD and to recognize the impact that the symptoms of a spectrum disorder have on the person with the diagnosis and on the rest of the family as well. This finding resembles the data on siblings of people with intellectual disabilities. With this knowledge comes a new set of challenges.

The person who views the world through the lens of Piaget’s formal operational stage is able to recognize the long term implications of having a brother/sister with an ASD or another developmental disorder (e.g., Eisenberg, Baker & Blacher, 1998). As Glasberg (2000) points out he can

The Impact of Autism on Siblings 49

now anticipate the long-term impact on his brother’s/sister’s life and realize how limited that life may be. He will also recognize the possibility of transmitting to his own children the genetic material that causes autism. He may ask himself whether he really wants to have children under those conditions. In addition, although it is still a remote event for most adolescents, he will realize that once his parents die he may have responsibility for his sibling on the spectrum and be concerned about that role in his life (Harris & Glasberg, 2003).

Adulthood

One of the major life cycle events of young adulthood is starting a job or career. For many young adults the experience of living with an ASD has an impact on these vocational plans. A study by Martins (2007) of 25 young adult siblings of people with an ASD and 25 young adults whose siblings did not have a chronic disability or illness, showed that the people who grew up with a sibling on the spectrum were more likely to say that their sibling had influenced their career choice and were more likely to be pre- paring for a human service career than were the comparison group. They were also more likely to report that they had encountered some negative experiences during childhood because of their sibling on the spectrum.

Marriage and creating a family of one’s own are other major life cycle events that are normative for many adults. Although there are few if any data looking at how adult siblings respond to these opportunities, there is a fair amount of anecdotal evidence suggesting that these events pose signifi- cant problems for some adult siblings. Beginning in their teenage years many young people begin to reflect on whether they want to have children (Glasberg, 2000) because of the risk of having a child with autism. Some doubtless decide the risk is too great, while others will elect to take a chance. Should they decide not to have children they will find their pool of potential marital partners narrowed as many young people view raising children as a central part of their future lives.

In adulthood one also faces the reality of the aging and ultimate death of one’s parents. Although teenagers worry about this painful event (Glas- berg, 2000), it is usually adults who encounter the reality. With the failing health of their parents adult siblings may take on a greater supervisory role for their sibling on the spectrum than they had in the past. Some people with ASDs have significant cognitive deficits as well and may have remained in their parents’ home well into adulthood. In a study of siblings of adults with mental retardation who were living in the parental home, Griffiths and Unger (1994) found that about half of the adult siblings said they would be willing to take on a caretaker role in the future, but parents reported that they were reluctant to cast them in this role. This reluctance may make the transition to sibling-as-caretaker a more complex process than when fami- lies have agreed on a plan well in advance of parental illness and death.

50 S. J. Ferraioli and S. L. Harris

The aging of parents requires the family to make a decision about a suitable living arrangement for the adult on the spectrum. In some cases a typically developing sibling may bring the person into his or her home, while in others, a group home or supervised apartment may be a preferred solution. Even if the sibling on the spectrum is able to live on his or her own, there is often greater oversight required for the person with a spec- trum disorder than for other adults. Finally, even as he or she grieves the death of his or her parents, the typically developing sibling may grieve essentially alone as his or her sibling on the spectrum may have difficulty understanding the death of a parent and be unable to fully empathize with the sense of loss that is typical for adult children who lose a parent. In each of these examples the life cycle events follow a very different pattern than one would define as normative in Western culture.

IN CLOSING

The majority of brothers and sisters of children with ASDs function well as children, adolescents, and adults. Although being the sibling of a person with an ASD does have an impact on them that does not mean the influence is a psychologically harmful one. There are a smaller group of siblings who do exhibit problematic issues. Some of these people may have been born with the broad autism phenotype (BAP) and been especially vulnerable to challenges in adaptation. Others may have grown up in families that were not able to teach them effective coping methods for addressing their con- cerns about their sibling’s ASD or in families that were so preoccupied with the needs of the child on the spectrum that they were unable to respond to the needs of the typically developing child.

Although there is a modest body of research on the sibling experience, much remains to be learned. There are a number of variables that merit study such as the most effective coping styles for children whose siblings fall at various points on the spectrum, as well as a need for research on the most effective ways for parents and professionals to provide support to the child who has a brother or sister with autism. We also know relatively little about the adult who has a brother or sister with an ASD and how the spe- cific diagnosis influences the extended life cycle of both the person with an ASD and the sibling.

Even in the best functioning of families with the most resilient chil- dren, having a brother or sister with an ASD does alter normative life cycle events. We have seen that very clearly in some of the life cycle events of the typically developing siblings whose vocational, marital, and family planning goals may be influenced. It is also evident in the atypical care- taker role that many adult siblings ultimately assume for their brother or sister with an ASD.

The Impact of Autism on Siblings 51

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