According to Yalom (1980), humans appear to be meaning-seeking creatures who live in a world devoid of intrinsic meaning. One of humans’ major tasks is to invent a meaning robust enough to support a life. Humans have a central role in constituting the world by the meaning they ascribe to it. As a consequence, humans have a need for structure and control over their life, and they achieve that by ascribing meaning and constituting the world they live in. Life choices, plans, and goals are ways of doing that. According to Yalom (1980), an individual who possesses a sense of meaning experiences life as having some purpose or function to be fulfilled, some principal goal or goals to which to apply oneself.
Having a child, taking care of a child, and ensuring a child’s development to adulthood is an activity that provides human beings with a sense of life purpose. Several studies have demonstrated the centrality of this experience in a woman’s life as parenting appears to be one of the woman’s key developmental tasks, one of current and expected future identities, and a task that is generally more central to women’s self conception as it determines her personal goals (Cowan, Cowan, Heming, & Miller, 1991; Salmela-Aro, Nurmi, Saisto, & Halmesrnaki, 2000). The presence of a child in a woman’s life implies that she will have several experiences that are associated with the child’s development. As a consequence, this creates some structure and predictability regarding one’s life, and also provides a sense of purpose and direction about fulfilling the goal of raising a child.
The diagnosis of a mother’s child with autism appears to be a threat of one’s meaning in life. The mother experiences a loss: loss of the child she thought she had, loss of the maternal identity she thought she had, and as a consequence loss of her own direction in life since identities provide a purpose, existential meaning and guidance (Thoits, 1982). The mother now faces the task of acquiring a new identity: the mother of a child diagnosed with autism.
The child’s diagnosis, affects the mother’s identity. Mead (1934) argues that identity is developed and maintained in relation to others, and Rubin (1984) argues specifically for the maternal identity that is developed in relation to the child. It is through identifying the child that the mother identifies herself.
However, in the case of mild or moderate autism, mothers appear to experience challenges in the integrating their new identity. Ambiguity about the child’s future potential imposes a great challenge for these mothers. The child might manage to learn the necessary social skills to live an independent life, therefore, this makes it harder for the mother to identify the child. In this case, the mother’s role and identity will change. She will not have to provide active parenting for her whole life and she will be able to experience the life events that characterises the life cycle of a typical family (the child might be able to acquire education, secure a job, and in time, get married). Therefore, the ambiguity about a child’s prognosis seems to freeze the grieving process of the lost identity, and as a consequence freeze the process of integrating the new identity of being a mother of a child with autism.
It seems that mothers at this stage experience a loss of control and structure in their lives. The purpose, the predictability and the structure they thought they had with the birth of their child is lost, and now they find themselves on ambiguous and unpredictable ground. Humans have a need for control and structure as the loss of it results in anxiety (Yalom, 1980). What seems to be happening is that these mothers try to make the unpredictable, predictable by investing in their child’s development and progress. It is the behavioural tasks involved in the maternal role that need to be employed in order to bring this change, this desired predictability and structure in their life. It appears that the participants rearranged their internal equilibrium of identities in a way that would help them achieve predictability and structure. This rearrangement seems to result in an internal disequilibrium as the identity of the mother who parents a child diagnosed with autism seems to be so dominant and central that it leaves no or little space for other identities to be expressed. It seems that the maternal identity does not exist in balance with the other identities as it occupies the largest part of the self and overshadows other identities. Baumgartner (2007) argues that an identity is integrated harmoniously with the self system when an individual stops being absorbed and involved with activities that are related to one identity only. The mothers of the present study talked about their life revolving around the child diagnosed with autism. It was only when they
perceived the diagnosis as being manageable and not restrictive for the child, that they were able to open themselves up to the world.
The study reveals that the mothers' lives had changed. The participants seem to have felt alienated from familiar life, from the meaning and purpose they had ascribed to their lives. As a consequence it seems that the meaning of their life in this stage of their life was to restore the lost balance, structure, and purpose they had before the diagnosis. This seems to be reflected both in their difficulty making sense of the loss in a way that would facilitate its acceptance, and by their preoccupation with their child’s future independence. It appears that preoccupation with one identity only alienates the mothers from herself as she loses touch with her potential to express herself in ways other than parenting her child with autism. Moreover, focusing on a single identity alienates mothers from the rest of the world. Career opportunities are restricted and socialisation is mainly limited to people that share similar experiences, as the mothers in this study felt misunderstood by others. Negative reactions from others seem to further intensify this imbalance as some mothers reported not feeling embedded in other contexts. Josselson (1994) has identified embeddedness as one of the dimensions that define the relational space in which people live and as a consequence where their sense of identity is shaped. She further argues that the individual who wishes to belong, but does not belong, may have an intense sense of yearning and feel excluded from the ongoing process of life (Josselson, 1994). This view endorses the present study's finding that the mothers’ internal disequilibrium, which resulted from the need to reconstruct their sense of self after the loss of their dreamed-for child, is further intensified by public responses to the child and the mother. Moreover, it can be argued that by placing their main focus on their maternal identity in order to achieve the maternal goals of helping the child progress will further facilitate and support these mothers’ embeddedness within more social contexts, and will consequently preserve their potentiality in the world (Heidegger, as cited in Cashin, 2004).
It may be concluded that the loss experienced by the mothers in this study following the child’s diagnosis resulted in disequilibrium in the way they experienced themselves. Loss threatens our sense of self worth and our fundamental beliefs about how the world works (Epstein, 1973; Jannof-Bulman, 1992). Davis and Nolen-Hoeksema (2001) argue that making sense of the loss involves the task of maintaining threatened worldviews, while finding benefit involves the task of rebuilding a threatened sense of self. It appears that, for the participants in this study, the process of making sense of the loss resulted in an effort to
reconstruct their sense of identity and their fundamental beliefs about how the world works. This reconstruction process appeared to result in disequilibrium as the maternal identity that is mostly threatened by this loss appears to dominate the self system after the loss of their dream-for child. It appeared that intense commitment to maternal tasks reflects the participants’ efforts to maintain their threatened world views and their own self worth as they focused on helping their children live a happy, independent, and meaningful life. It should be noted though, that this experience is quite challenging for the mothers as they appear to struggle with their sense of responsibility and loss of world views, priorities, and relationships they hold prior to their child’s diagnosis.
3. Critical evaluation of the research