Academic journal article Family Relations

Ambiguous Loss in Families of Children with Autism Spectrum Disorders*

Academic journal article Family Relations

Ambiguous Loss in Families of Children with Autism Spectrum Disorders*

Article excerpt


Learning that a child has a lifelong developmental disorder is stressful and challenging to any family, yet it is clear that some families adapt and adjust more readily than others. In this article, it is proposed that a diagnosis of an autism spectrum disorder (ASD) is especially likely to be experienced as ambiguous loss. Interviews with mothers of children with ASDs are used to identify whether mothers express feelings of ambiguous loss when talking about their child. Then, a specific hypothesis derived from ambiguous loss theory-that higher levels of identity ambiguity in mothers are linked to higher levels of depressive symptoms and perceived stress independent of the severity of the child's diagnosis-is tested and found to be supported. Recognition of ambiguous loss in families of children with ASDs would help professionals provide more effective support and assistance to families.

Key Words: ambiguous loss, autism, developmental disability, family adjustment.

An extensive literature exists on the outcomes for parents when children have developmental disabilities. It has been commonly reported that parents, especially mothers, of children with disabilities experience more depressive symptoms (Noh, Dumas, Wolf, & Fisman, 1989; Sloper & Turner, 1993) and higher levels of stress (Goldberg, Morris, Simmons, Fowler, & Levison, 1990; Kazak & Marvin, 1984; Pelchat et al., 1999) as compared with parents of children who are typically developing. However, in contrast to this bleak picture, some researchers have noted that many families of children with disabilities adapt successfully to their child's needs and manage to function well (e.g., Hastings & Taunt, 2002; Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001).

Efforts to understand why some families accommodate more readily to a child's disability than others have focused largely on two factors: child characteristics, especially type and degree of severity of the child's disability; and social support available to the family. For the most part, the severity of a child's disability has not been consistently linked to family functioning (Baker, Blacher, Crnic, & Edelbrock, 2002; Wallander & Varni, 1998): although social support has been found to be helpful in reducing psychological distress of parents (Dunst, Trivette, & Cross, 1986; Minnes, 1998), it does not provide an explanation for the initial variation in distress.

In this article, it is proposed that ambiguous loss theory (Boss, 1999, 2004) can be used to help understand differences in parental responses to learning that their child has a lifelong and pervasive disability. The specific situation examined here is the diagnosis of an autism spectrum disorder (ASD) in a child. In brief, it is suggested that many parents of children with ASDs experience a sense of ambiguous loss. The child they thought they had is not the child they must learn to live with. Thus, parental expectations must change. Further, parents' ability to tolerate and manage the ambiguity of their child's disability is proposed as a key factor in their experience of ambiguous loss and the related confusion over family members' identities, both of which contribute to emotional distress.

Ambiguous Loss in Autism

The theory of ambiguous loss (Boss, 1999, 2006) arose out of family stress theory, which posits that stress results whenever there is change within a family. According to Boss, the most severe Stressors are those changes that are not clear-cut but are ambiguous. In these cases, resolution of the situation is not possible and the outcome not predictable. In examining family response to chronic illness and to Alzheimer's disease, Boss and colleagues (Boss & Couden, 2002; Caron, Boss, & Mortimer, 1999) have identified several areas of ambiguity that contribute to family distress: (a) a lack of clarity in diagnosis, (b) difficulty in predicting outcomes, (c) day-to-day changes in functioning of the ill person that affect family relationships, (d) the fact that the ill individual may give an outward appearance of health thus raising expectations for his or her behavior and functioning within the family, and (e) fear that important emotional relationships will be affected by the illness. …

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