Disability Studies Quarterly Spring 2008, Volume 28, No.2 <www.dsq-sds.org> Copyright 2008 by the Society for Disability Studies

Introduction

Alexithymia literally means "no words for feelings," and was coined to refer to the inability to find appropriate words to describe one's feelings (Sifneos, 1972). It entails a personality dimension which features a tendency to somaticize rather than express emotions verbally (Lesser, 1981; Sifneos, Apfel-Savitz, & Frankel, 1977), deficit of emotional intelligence (Taylor, Bagby, & Parker, 1997), and limitations in affect regulation and cognitive processing of affect (Krystal, 1988), which is common both in normal and clinical populations (Salminen, Saarijaervi, Aeaerelae, Toikka, & Kauhanen, 1999; Taylor, 1994). The literature suggests that alexithymia is linked to one's family of origin, and that obstacles to emotional expression in that setting engender an inability to express emotionality in family members as they mature.

Dysfunction in the family environment contributes to alexithymia (Crittenden, 1994). Clinically, alexithymia has been related to post-traumatic stress, panic disorder, depression, eating disorders, substance abuse, dysphoria and affect intolerance (Cecero and Holmstrom, 1997; Hyer, Woods, Summers, Boudewyns, & Harrison, 1990; Krystal, 1981; Zeitlin, McNally, & Cassiday, 1993; Sifneos, 1996; Taylor, 1994).

Object relations refer to the "capacity for mature, sustained relations with other human beings that result from the evolution of one's internalized sense of self and others" (Straussner & Spiegel, 1996, p.300). In early childhood, poor object relations will inevitably entail an inability to regulate affect. Since affect regulation is primarily accomplished through verbal expression and manipulation of feelings as the individual matures, alexithymia is an expected effect of poor object relations mastery.

Since the ability to deal with feelings is often learned in the context of the overall family functioning style, families who shun emotional expression will engender alexithymia in the children. It is posited that the presence of a sibling with disabilities — who tends to monopolize family resources without allowing the overt expression anger and frustration by siblings — would definitely result in alexythimic reactions.

It is clear that alexithymia is a personality style which flows both developmentally and conceptually from difficulties in affect regulation. Indeed, empirical studies of alexithymia confirm that alexithymia is associated with an inability to regulate negative affect, a phenomenon that likely originates in the early years when affect regulation and the development of healthy object relations occurs. This engenders a reserved interpersonal style and a critical, mistrustful attitude toward others (Horton, Gewirtz, & Keuter, 1992; Cecero and Holmstrom, 1997).

Family Functioning

The family context is where most of us learn to communicate and, perhaps more importantly, where most of us learn how to think about communication. (Vangelisti, 1993, p. 42).

In colloquial terms, "healthy" family functioning refers to qualities in the family that are considered significant in the overall functioning of the family and in the development of capable and adaptive family members. Family of origin theories stress the impact of experiences and emotional patterns within the family on the individual functioning of each of its members and on interpersonal interactions (Boszormenyi-Nagy & Spark, 1973; Bowen, 1978; Framo, 1972; Kerr & Bowen, 1988; Williamson, 1981). Healthy family functioning is often used to refer to emotional openness and expressiveness in the family of origin, which has been linked to the affective development of its members. Communication within the family, in particular, has been noted to influence the level of emotional openness and expression in its members as they mature.

A host of recent studies have linked alexithymia found in adolescents and adults to various aspects of family dysfunction in the person's family of origin. Children's affective expressions have been shown to relate to the amount of information, level of intensity, and types of emotions shared in their families (Bornstein, Fitzgerald, Briones, Pieniadz, & D'Ari, 1993). Children learn what to feel (Hochschild, 1979) and how to express their feelings (Saarni, 1979) in their families of origin. Taylor, Bagby, and Parker (1997) suggested that when affect is constricted in the family, its children tend to display constricted affect as well. Children from families that are rated to be highly expressive show higher levels of unrestricted expressiveness, express more negative affect, and communicate better nonverbally than children from low-expressive families (Halberstadt, 1986; Halberstadt, Fox, & Jones, 1993). Analyzing a body of research by Matthews and her colleagues at the University of Pittsburgh, Karren, Hafen, Smith, and Frandsen (2002) concluded that children classified as having type A personalities came from homes where families were less open with their feelings. Berenbaum and James (1994) showed that young adults who are alexithymic grew up in homes in which there was poor affective expressiveness. Lumley, Mader, Gramzow, and Papineau, (1996) showed that young adults' scores of alexithymia are correlated with alexithymic scores obtained from their mothers. In addition, there is evidence that in adolescence alexithymia may be associated with an inability to regulate negative affect (Horton, Gewirtz, & Keuter, 1992). The extent to which family members, as children, were allowed and encouraged to express their opinions and feelings to each other was a strong predictor of alexithymic tendencies in adulthood for university students (Kench and Irwin, 2000; Yelsma, Hovestadt, Anderson, and Nilsson, 2000). Hauser, Powers, and Noam (1991) found that adults who were members of functional families of origin tend to have more exchanges of emotional information, whereas Ferreira and Winter (1968) found that adults who were members of dysfunctional families of origin tend to withhold their feelings, their wants and their dislikes. King and Mallinckrodt (2000) found that alexithymia was positively associated with general family dysfunction and negatively associated with aspects of healthy family environments such as emotional expression and family cohesion. Halberstadt (1986) found that people from low-expressiveness families are less spontaneous with their emotions and convey their emotions less clearly than do others from highly expressive families of origin. Dunn and Brown (1994) have shown a link between a poor understanding of emotions in adulthood and the experience of growing up in a family in which negative emotions were frequently expressed.

Yelsma et al. (2000) stressed the importance of examining differences in affective expression within family atmospheres in diverse ethnic groups, since norms may vary widely across cultures. In a study of European American and Asian American college students, Le (1998) found that culture was associated with alexithymia, with Asian Americans scoring higher on the alexithymia scale than their European American counterparts, reporting that culture was related to parental socialization of emotions as well. (The parents of the Asian American students were less likely to display physical affection and to verbalize positive emotions.) Interestingly, he found that parental socialization of emotion mediated between culture and alexithymia, meaning that if parents were expressive with their emotions then, despite the cultural trend toward alexithymia, children did not grow up alexithymic.

Effects of Disability in the Family

When a family has a child with a handicap, all members are affected (Fewell, 1986). The effect obviously differs from family to family and from one family member to the next. Because siblings share an intimate and intense relationship (Sutton-Smith & Rosenberg, 1970), a person with a handicap will have a special impact on the siblings, one that is unique to this kind of sibling relationship (Dyson, 1989).

Having a sibling with a disability exerts a powerful influence on the personal development of the other siblings (Seltzer & Krauss, 1993). "Families with a handicapped child offer normal siblings unusual opportunities for growth. For some siblings, however, life with a handicapped brother or sister may lead to adjustment problems" (Seligman, 1983, p. 529). There is a paucity of published research focusing on the way in which adults are affected by the experience of having siblings with disabilities. Grossman (1972) found that college students with same sex siblings with mental retardation expressed considerable embarrassment about their sibling. Many felt a lack of understanding their emotional reactions to their sibling with disabilities, as well as guilt due to their own health and normalcy and about negative feelings they harbored toward their sibling with disabilities. Analyzing the findings from the perspective of affect regulation theory, it is apparent to us that a good number of these students would indeed be alexithymic.

Characteristics of the family environment have been shown to be important determinants of the ability of siblings without disabilities to adjust positively to the family situation (Cleveland & Miller, 1977; Grossman, 1972). Mitchell and Rizzo (1985) found that in order to properly deal with feelings that arise in adolescents who have siblings with mental retardation, the family needs to have communication that is direct and consistent and in which people are free to openly express their thoughts, feelings and expectations. When a problem with communication exists in the family, it may cause the healthy siblings to feel lonely (Seligman, 1983). They may feel that certain topics are taboo and that certain of their feelings must remain hidden, placing great strain on the siblings. Cleveland and Miller (1977) and Grossman (1972) found that when interactions among family members were constrained during childhood, and there was poor communication within the family, healthy siblings, as adults, were less willing to maintain an active, ongoing supportive relationship with their brother or sister with retardation. These researchers report that even married siblings who were no longer living within the family of origin environment showed a correlation between the social climate of their family of origin and the current level of involvement with their sibling with disabilities. This contrasts with the literature on regular sibling relationships, which indicates that (normal) sibling relationships tend to grow autonomous of the family of origin by middle age (Goetting, 1986).

Data from people whose siblings suffer from chronic illnesses parallel those of the people who have sibling with disabilities. Chronic illness of one family member can cause increased communication difficulties (McKeever, 1983) and emotional deprivation (Kramer, 1984) among siblings. Adults who grew up with a sibling with chronic illness reported that, as children, they felt scared and alone and were not able to express their feelings, and many reported that they still find themselves unable to express their true feelings to their ill sibling, to family members, and in general (Smith, 1998).

Two interesting studies highlight the processing and expression of anger in play and in general behavior, reporting that siblings expressed anger directly toward siblings without disabilities, but only indirectly toward those with disabilities (Miller, 1974; Stoneman and Brody, 1993). (This pattern differs in families of children with conduct disorders, which was noted by Patterson, 1980, where normal siblings reportedly reciprocated and escalated the level of attack.) These studies highlight the tendency of children who have siblings with disabilities to withhold anger, which would otherwise be directed toward the source.

Daldrup and Gust (1990) argue that suppressing anger creates the "keyboard effect": once a person starts to repress even one emotion, s/he begins to repress them all, like pressing down the soft pedal on a piano that in turn softens all the notes. To properly deal with anger, one must be able to confront the source of anger and to express his/her feelings directly to the source (Karren et al., 2002). Siblings tend not to express their anger with their special sibling, at least not directly toward its source, the result of which may be an overall dulling of all emotions, or alexithymia.

Disability in the Jewish Family

There is a marked dearth of published literature on attitudes of Orthodox Jews toward people with disabilities. A thorough search of published research yielded only two studies, both focused on the attitudes of Jewish mothers toward their children with mental retardation (Biberfeld, 1984; Stahl, 1991). No studies on the attitudes of those who have siblings with disabilities were found, nor on how they might be affected by parental attitudes.

More recently, a behavioral and attitudinal study focused on attitudes, feelings, and experiences among Orthodox Jews who have family members with disabilities (Pollak, 2006). Complex findings emerged in the areas of perceived stigma, attitudes toward marriage, perceived effect on self-esteem, and attitudes toward God and His role in the world. Results of particular interest to the current research included: a) parents had different attitudes than siblings, b) stigma declined in recent years, c) there were variable and paradoxical effects on self esteem, d) genetic issues influenced dating decisions, e) feelings toward God were generally positive. In a thorough analysis of traditional Jewish attitudes towards siblings with disabilities spanning biblical and Talmudic texts, Abrams (1998) found strong commonalities in Jewish attitudes toward people with mental illness, mental retardation, physical challenges, deafness, blindness, and other disabilities. They are generally seen as "blemished" and lacking cognition that can be communicated to others. It is argued that contemporary Orthodox Jewish attitudes toward disability are still significantly informed by ancient and traditional writings, and that (at some level) people still maintain the belief that people with disabilities, and their families, are "blemished."

If one translates Goffman's (1963) notions of stigma into contemporary vernacular, it can be stated that the stigma of individuals within a culture or a community as "blemished" is usually triggered by physical anomalies or by perceived differences in behavioral styles. We argue that this renders individual with developmental delay, who often meet both of these criteria, as prime targets for stigmatization.

An area where there is some published literature on the stigma within Orthodox Jewish life is mental illness:

There appears to be an implicit but non-verbalized structure, which permeates the day-to-day life of the orthodox Jewish family. The structure includes… attitudes toward the family, children, marriage, illness, and family interrelationships….

[T]his functional value of the child is congruent with Western pre-renaissance attitudes toward the child as a potential citizen who will one day participate in adult society and function adaptively within greater civilization. This view of the child… persists in its archaic form in the "traditional" cultures of which Orthodox Judaism is a prime example. The appreciation of children not for themselves but for their role in the larger religious complex is evident in the prescribed blessing for the parent of a newborn child: "May you raise him for learning, marriage, and good deeds."

This formulation of the role of the child within the family modifies the reorganization of the family with an ill child. Generally, the family of such a child revolves about the child as a major focus. The family of the schizophrenic child, in particular, becomes preoccupied with the child's difficulties and with the exploration of strategies for intervention. In the orthodox Jewish family, too, the child becomes the central figure; however, this occurs not so much because of concern for the child's welfare but rather out of concern for the debilitating and threatening effects the child will have on the family. The perceived threat is to such entities as "family name," "family honor," "family function," and "tradition." (Juni, 1980, 230-231)1

It is clear that the dynamics that are extant within the family of the ill child are relevant to the family of individuals with disabilities as well. In an interview the first author conducted with a prominent Rabbi and Orthodox Jewish educator, the primary dynamic stressed was the negative impact of such an individual on the "marriagibility" of other family members (Cohen, 2002). Consistent with the effects of physical and mental illnesses, the presence of a person with developmental disabilities in the family in general, and a sibling in particular, reduces the desirability of others in the family to prospective suitors. This is based primarily on issues of genetic inheritability, but also on the more general effects of stigma. As this Rabbi describes it, the almost universal response in this community to the member with disabilities is to "keep him or her in the closet for as long as feasible — or, at least until the siblings have all been married off." This family member unwittingly becomes a threat to other family members and is dealt with by obfuscation and denial. The least likely response from the Orthodox Jewish family would be to acknowledge publicly the presence of this individual.

It is argued that this lack of acknowledgement leads to a defensive stance toward the family member with disabilities, not only with respect to outsiders, but also within the family. Openness and acceptance of this person as a legitimate family member is sure to be diminished by the feelings of shame that the public stigma instills within the family members.

Hypotheses

This study was designed to investigate three factors that may lead to the development of alexithymia in Orthodox Jewish adults: the level of object relations focused on early inner experience with one's caregiver(s); health in one's family of origin; and the presence or absence of a sibling with disabilities.

1. Object Relations was hypothesized to correlate with alexithymia, based on the view of alexithymia as a defense against experiencing emotions that one is unable to process. People with healthy levels of object relations have had a good dosage of parental mirroring in their early years, which equipped them with the inner ability to modulate emotion for themselves as they grew older. People who are able to modulate their emotions have no need to avoid their experience. In a major study of 277 respondents, Bladt (2002) found significant correlations between alexithymia and each of the four categories of the Bell Object Relations Scales. Fukunishi, Kawamura, Ishikawa, Ago, Sei, Morita, and Rahe (1997) reported that Japanese college students' ratings of the care they received from their mothers (a measure of early object relations) were negatively correlated with alexithymia. It is hypothesized that this relationship is extant among Orthodox Jews as well.
2. The psychological health of one's family of origin was hypothesized to correlate with alexithymia, based on the understanding that early family environment influences the way in which people learn to handle their emotions. If one's family of origin was open and communicative with their emotions, family members would feel safe expressing their emotions and will feel comfortable doing so outside of the family as well. However, if one grows up in a family where emotions were shunned, blunted, denied, or simply not discussed then s/he would learn this is the way emotions are handled in the world at large. S/he may then develop strategies (or defenses) to avoid experiencing affect and, at the very least, from expressing it to others.
3. The presence of a sibling with disabilities was hypothesized to correlate with alexithymia, based on the assumption that people are not able to express the full range of their feelings concerning their sibling, either directly or indirectly. Specifically, in those cases where the siblings' disabilities entail cognitive deficits, it is usually difficult to explain oneself fully to them, especially in the complex manner necessary to accurately describe emotions. Moreover, siblings of people with disabilities (of any type) have often reported feeling a sense of guilt about various emotions that they have toward their sibling, or about their sibling experience, which would prevent one from fully expressing his/her feelings, either to his/her sibling directly or to others. Repression then comes into play, which could lead to overall emotional numbing or alexithymia.

Method

Results

We present descriptive statistics for the alexithymia, object relations, and family emotional expressiveness scales for those with siblings with disabilities and for those with siblings without disabilities in Table 1.

The basic demographic variables (age, sex, marital status, and occupation) were examined to determine if the values of alexithymia differed between subgroups. Results showed that occupation was the only one of these demographic variables that related significantly to alexithymia (t = 2.54, df = 91, p < .01), with those in the helping professions showing significantly lower alexithymia scores than those in other professions.

Pearson product-moment correlations were computed between each of the four BORI factors, the FOEAS, and alexithymia. Results, presented in Table 2, confirmed that the BORI scales and the FOEAS were correlated with alexithymia. The presence of a sibling with disabilities did not relate to alexithymia levels (t = .75, p > .05). (As can be seen in Table 1, the mean alexithymia score for those who had siblings with disabilities was actually 78.30, as compared with 79.87 for those who did not have sibling with disabilities.) An analysis of covariance, where the effect of occupation was controlled, yielded an F (1, 90) value of 1.28 (p > .05), indicating that the presence of a sibling with disabilities was not related to alexithymia even when occupation was statistically controlled for.

To determine the relative contributions of each of these predictors, a multiple regression analysis was conducted to ascertain the variance in alexithymia predicted by a combination of the independent variables of the FOEAS, the BORI Scales, and the presence of a sibling with disabilities, while controlling statistically for the effects of the helping occupation. Occupation was entered in the first step of the regression, and the independent variables were entered simultaneously in the second step in order to partial out regression coefficients for each predictor variable. Prior to the analysis, the statistical assumptions of Multiple Regression (lack of multicollinariety, minimal outliers, and normality, linearity, and homeoscedacity of residuals) were verified.

Results of the multiple regression are summarized in Table 3. This overall model is a statistically significant predictor of alexithymia. The BORI Scales and the FOEAS contribute significantly as a block to the explanation of variance in Alexithymia even when the effects of the occupation covariate are corrected for. The FOEAS shows a significant unique contribution in explaining alexithymia. Among the BORI scales, however, only Social Incompetence shows a unique contribution in explaining alexithymia variance when the effects of all of the other scales are first considered. This implies that Social Incompetence has specific characteristics of Object Relations which are least measured by the other BORI scales, making it the best single predictor of alexithymia (if one was limited to using only one of the BORI scales as a predictor). Beta values show that insofar as they explain Alexithymia variance, Social Incompetence is the best predictor of the three, followed by FOEAS, followed by Helping Profession.

Discussion

Results indicated that each of the four BORI factors correlates with alexithymia; social incompetence is the strongest factor, followed by alienation and insecure attachment, with egocentricity being the weakest factor. This reinforces the notion that when one develops poor object relations early in life it correlates directly with one's ability to express, to differentiate, and (possibly) to experience emotions later in life. The results are consistent with the general body of the literature in this area, with the prototypical study of college freshmen by Bladt (2002) where each of the four Bell scales correlated with alexithymia, and with retrospective studies of early childhood predictors (e.g., Fukunishi at al., 1997) showing that alexithymia is related to judgments about the quality of care received from mother.

Results indicated that alexithymia is significantly related to the psychological health in one's family of origin. As theoretically posited, emotional openness in one's early home life affects one's ability to express, differentiate, and experience emotions later in life. The results are consistent with the studies which show that alexithymic adults hail from families with poor communication styles (Berenbaum & James, 1994), and that limitations on children's ability to express opinions in the family are the best predictors of alexithymia in adulthood (Kench & Irwin, 2000). In a study with college students, Yelsma at al. (2000) showed actual correlations between alexithymia and FOS, which is the more basic version of the FOEAS scale used in this study to measure family expressiveness in the family of origin.

It was hypothesized that people who had siblings with disabilities would show higher alexithymia scores than peers who did not have siblings with disabilities. This would be in line with Cuskelly's (1999) formulation of the generally accepted maxim in the disability literature that those who have siblings with disabilities are at risk for mental health concerns. This hypothesis was not confirmed by this study. The lack of support for this hypothesis must necessarily give one pause. Perhaps, it should lead us to reconsider assumptions of negativity — assumptions which may actually entail an acceptance of the stigma toward people with disabilities as a sociological given, which is part and parcel of the dynamics of families with members who have disabilities.

There are two significant implications which bear directly on our understanding of what it is like to grow up with a sibling with disabilities and on how we conceptualize the effects of this experience on adult emotionality. It would seem that the presence of a sibling with disabilities can best be construed as a potential stressor within the family which is not specifically distinct or more threatening than the sundry stressors in families who do not have a member with disabilities. Doubtless, the extent to which the family reacts by stifling emotional expression, does impact on emotional expressive ability in its members. Moreover, the extent to which parents (or primary caretakers) interpret and construct the presence of a family member with disabilities as a destabilizing fulcrum for the entire family engendering poor object relations in its members), correlates with diminished emotional expressiveness in the siblings. It is stressed, however, that the negative effect for those with siblings with disabilities, effects which are intuitively assumed to exist (and, indeed, served as the basis of our third hypothesis) cannot be attributed to the presence of the sibling. Instead, they are clearly affected by deficits in personality or emotional intelligence which may have been sparked by the idiosyncratic adjustment of the particular family to this particular potential stressor.

A second implication of the findings goes to the very heart of the assumption of negativity — namely, that the presence of a sibling with disabilities is essentially a stressor which is expected to engender negative effects on family members. In fact, some researchers have taken issue with Cuskelly's conclusion, claiming that individuals' adjustments to the presence of a sibling with disabilities must not necessarily entail negative consequences (Lyons-Sjostrom, 2003). Moreover, the empirical literature has shown that this is definitely not typical in Jewish families (Pollak, 2006).

For siblings in particular, indeed, there are studies that contradict Cuskelly's (1999) negative formulation, and suggest distinctly positive effects of having a sibling with disabilities. McHale and Gamble (1987) stress that "children with disabled siblings appear to have more positive and fewer negative behavioral interactions than do those with non-disabled siblings" (p. 141), with the positive aspects including empathy, altruism, and tolerance for differences. In addition, Conners and Stalker (2003) report that most of those who have siblings with disabilities perceive their sibling relationship as a predominantly positive experience. Similarly, Montiel (2003) found those who have a sibling with disabilities are more considerate and less judgmental of people because of their own experience with their sibling.

Limitations of Study

This study was limited only to people who describe themselves as Orthodox Jews. This was done to get a better understanding of a group of people that are rarely studied systematically, yet are in need of understanding. Although the results are best fit for this population, there is a good chance that other religious groups, specifically those with similar family values and communal stigma, may fit the portrait painted here of the Orthodox Jew's experience with alexithymia, object relations, family openness, and the experience of having a sibling with disabilities.

Data were basically collected from several samples of convenience, as our experience from the first author's previous study (and the general word among researchers with Orthodox Jews) shows that stigma is a taboo topic and questionnaires are typically discarded without much fanfare. Solicited participants were either known to this researcher, belonged to organizations the researcher belongs to, or were friends of friends. Most respondents are middle- to upper-class, all are white, and all live in cities with a major Jewish presence. While this significantly limits the generalizing of the results to "the outside world," it intensifies their salience to members of this population.

This sibling group was highly educated, with a mean education level greater than a college degree. The results may thus not be applicable to those with lower educational levels.

Almost all study respondents reported having lived at home with both parents as children. Perhaps the effects of a sibling with disabilities would be different in other family constellations.

Sixty-five percent of the respondents had some family member with disabilities. Perhaps that is why those who had siblings with disabilities did not show distinct profiles in this study, since their responses were juxtaposed with those with a significant proportion of those who had family members (other than siblings) with disabilities. Moreover, since many respondents were from the researcher's peer / professional background, which is characterized by service and commitment to people with disabilities, the study population may have been particularly equipped with the emotional and attitudinal resources to deal with the stress and dissonance of having a sibling with disabilities.

This study focused specifically on siblings of people with developmental disabilities. Those with siblings with physical or psychiatric limitations may have similar experiences in many areas to those surveyed in this study, but in many ways these results may not be applicable.

Areas for Future Research

Alexithymia research needs further elaboration before it can give us a complete understanding of its etiology and possible reversibility. This study strengthened the literature on the relationship between alexithymia and object relations, but did not imply causality or directionality. Further studies may shed light on the details of this relationship, and ultimately on the way to repair them both therapeutically.

In the area of early family environment, it has long been known, at least in the analytic circles, that one's life as a child affects who one becomes as an adult. This study shed light on how one's early family experience with emotions leads to one's emotional world as an adult. Further exploration begs greater understanding of how to intervene when the psychological environment in the family is poor and how to prevent a poor early family climate from producing alexithymic adults.

In the religious arena, this work is far from done. Further research needs to get deeper into the religious Jewish communities where stigma rages stronger and feelings are kept even quieter, as well as into communities where Jews are religious individuals because of their faith and are not communally involved as Jews. How would the results vary in these communities? In addition, other religious communities should be studied to see if these finding stretch across the faiths.

The disabilities discussed in the paper are developmental disabilities. Future study should address similar questions among family members of people with medical, physical, and psychiatric impairments as well.