CONTRIBUCIÓN AL DESARROLLO DE LAS COMPETENCIAS BÁSICAS

The disclosure decision-making model (DD-MM) was proposed as a framework to conceptualise how parents decided when and how to share an autism

diagnosis with their child. Each component will be considered in turn to consider the utility of its application. In decisions relating to health diagnosis disclosure, Greene (2009) proposes that individuals first assess information relating to the diagnosis in order to judge the potential risks of disclosure. This involves four factors – stigma, preparation, prognosis, symptoms and relevance to others. Perceived stigma was certainly interpreted as something that inhibited parents from sharing the diagnosis, serving a dual function of protecting both

themselves and their child. Perceived stigma has also been identified as a mediating factor in literature pertaining to paediatric HIV (Weiner et al., 2007; Pinzón-Iregui, 2013). Greene (2009) proposed that the perceived risk of stigma inhibits a disclosure decision, but, this may be moderated by relational quality and anticipated response. For parents of children with autism it is possible that that the inhibitory nature of perceived stigma lessens as they sense a child’s increasing need to know.

Preparation relates back to the time of initial diagnosis and parental

expectations at this time. Greene (2009) suggests that having an expectation of the outcome of the assessment may mean that decisions relating to disclosure have already begun. As Nissenbaum et al. (2002) indicated; expectations are important in parents initial response to diagnosis as autism being unexpected news could lead to parents feeling angry. Parents’ accommodation of the autism diagnosis therefore seems important in their decision of whether to tell. However, caution is needed in attributing this as a singular reason for non- disclosure, as parents simultaneously assess their child rather than moving through the model in a linear fashion. Furthermore, the model does not account for the role of health care professionals in this. For example, how does the manner in which the diagnosis was given and any support that was provided at that time influence this preparatory process?

Prognosis is also asserted to mediate the initial step of disclosure decision- making. This is perhaps where the model becomes less applicable in the case

138 of autism, as prognosis is largely defined in medical terms (i.e., is the illness terminal, what are the treatment options and potential outcomes). Perhaps the uncertainty of prognosis and outcomes in autism or, that it is a lifelong condition inhibits parents from sharing.

Interestingly, ‘symptoms’ form part of this initial assessment, with the

assumption being that increased symptomology leads to increased likelihood of disclosure. The invisibility of autism was interpreted as making the withholding of the diagnosis possible and coupled with the cognitive and social-emotional development of the child means that a diagnosis could be withheld for a significant period of time. However, parents frequently referred to the child’s emerging sense of awareness of their difficulties and difference from others as mediating factors in deciding whether to share the autism diagnosis. The final part of this first step is assessing relevance to others. It can be argued that being informed of one’s diagnosis is highly relevant to that person. However, accounts often reflected that parents were motivated to share when they perceived that the ‘time was right’, that their child would understand and, that self and child were ready. In the context of sharing an autism diagnosis with one’s child then, issues such as protection may supersede the relevance of the diagnosis.

If the perception of risk is deemed acceptable, the person will continue to the second phase - assessing the proposed receiver (i.e., the child). Parental assessments of their child are reflected throughout the findings, particularly in the sub-theme perceived child preparedness and also in ‘Parental motivation to share’. Parental assessment of their child’s possible response, and also their own fears of upsetting or harming their child often mediated parents’ intention to share. Greene (2009) argues that intention to disclose would increase in a better quality relationship. This perhaps over-simplifies the issue. In the case of a parent-child relationship ‘quality’ may hold less relevance than parents

intentions of protection or offering an explanation of their child’s difficulties. Furthermore the researcher is hesitant to apply the notion of relational quality in this context as is cannot be assumed that a better or poorer quality of

139 This criticism perhaps stems from the original conception of the model relating to personal disclosure of health information whereby the person may be seeking comfort or emotional support via disclosure which would make relational quality more important. In this sense, applying the model to an alternative relational dynamic may not be appropriate. Greene (2009) proposes that assessing the potential receiver could be interrupted by the asking of questions. Indeed, a child asking questions about their difference or directly about diagnosis was often a catalyst in parents naming autism. It was considered that the asking of questions indicated to parents that their child was ready or needed to know, which is supported in broader paediatric diagnosis disclosure literature (Ledlie, 1999; Madiba, 2012).

The final stage in the diagnosis decision- making model involves an individual judging their personal efficacy in disclosing the diagnosis and achieving a desired outcome. Elements of disclosure efficacy are seen in the sub-theme

parental preparedness whereby parents negotiate 1) whether they are

emotionally ready to share, 2) knowledgeable (enough) about autism and 3) feel confident that they can rework their knowledge to meaningfully share it with their child. However, being rooted in retrospective accounts, this may present a misleading picture as parents often spontaneously decided to share or were responding to their child’s questions. Arguably, parents who spontaneously shared the diagnosis may have held pre-existing judgements about their disclosure efficacy, although, this is of course speculative. Importantly, the researcher considers that the potential benefit of sharing for the child (e.g., containing emotional distress or providing an explanation) outweighed parental judgements of their efficacy in achieving that outcome. However, there was some indication that the emotional readiness of parents may surpass their perceptions of the child’s readiness to know; and this could link with their view that they could be effective in providing the support required at this sensitive time.

The DD-MM proposes that if all of the above stages are satisfactorily met then a discloser will proceed to enact message strategies. There was a general sense amongst participants that they should be the one to share the diagnosis with their child and not a third party. However, this is likely to be unique to each

140 family depending on how prepared parent’s feel to share. Laura for example expressed her view that they were “dumped” by services after the diagnostic assessment and that having professional input may be helpful in explaining about autism factually, by somebody who does not have the same emotional investment in the process.

There was a level of consistency in the enactment of message strategies including drawing on the positives; gate-keeping information; using every day experiences to promote understanding and packaging the response to suit the child. Parents used the outcomes of such interactions to inform their future approach by actively monitoring their child’s responses and attempting to assess their comprehension of the information shared.

The DD-MM has some utility in integrating the multifaceted nature of parents’ decision to share an autism diagnosis with their child. However, the model asserts that diagnostic disclosure is the product of a rational examination of predicted costs and benefits. In this way, the model assumes a cognitive and individualistic framework which does not capture the relational nature of this process and the social and cultural factors which may mediate this (Qiao et al., 2013). Furthermore, the often unplanned and spontaneous nature of the initial disclosure and subsequent sharing of information is not fully appreciated by the model. Although ultimately parents hold power in what is shared, the child becomes an active participant in this process which may mean that many of the decisional processes relating to parental intent become redundant.

Finally, the model does not account for the importance of meaning that was identified in the study. The model focuses on the enactment of messages and outcomes in terms of whether they inhibit or enhance the likelihood of future disclosures. What appeared important to the parents in this study was how a child made sense of the diagnosis, the meaning they attached to this and, the potential consequences on self-acceptance and well-being.