Diagnosis in child mental health

Exploring the benefits, risks and alternatives
CFCA Paper No. 48 – July 2018

4. Children's and parents' views of diagnosis

Diagnosis is both a category and a process (Callard, 2014; Kokanovic, Bendelow, & Philip, 2013). Thus far this paper has discussed it as a category, exploring the benefits and risks of conceptualising human challenges as discrete, symptoms-based disorders. Yet it is also important to remember that diagnostic categories are applied not to inert objects, but rather to people who have their own opinions and feelings about being diagnosed, and whose identities and lives can be profoundly influenced by receiving a diagnosis. Most of the qualitative research on people's experiences of being diagnosed with a mental health condition has been conducted with adults (e.g. Kokanovic et al., 2013; Rønberg, 2017; Rose & Thornicroft, 2010). Such research suggests that diagnostic labels are "engaged and lived with in multiple, ambivalent and often contradictory ways" (Callard, 2014, p. 528). For example, in a study of Australian adults diagnosed with depression, Kokanovic and colleagues (2013, p. 387) observed that participants,

… found themselves caught between the allure of medicalised discourse with its promise of cure and relief from "symptoms", and resistance to it, based on the recognition that their problems originated in the social domain, which was thought to be too complex to be treated with medication.

Interventions tend to be more effective when service providers acknowledge and respect service users' understanding of their own difficulties, including their ambivalence, uncertainty and inconsistences (Bringewatt, 2013).

There is only a very limited body of research exploring how children understand and live with a mental health diagnosis, most of which focuses on those diagnosed with ADHD (Bringewatt, 2011, 2013, 2017; Cooper & Shea, 1998, 1999). In a study involving 11-16 year olds, Cooper and Shea (1998) observed that while children and young people tended to welcome the diagnosis of ADHD because it provided a rational explanation for their problematic behaviour, many expressed feelings of isolation, helplessness and low self-esteem as a result of being diagnosed with what they saw as a permanent affliction. "Of particular concern," to Cooper and Shea, were "recurring inaccuracies in pupils' perceptions of the nature of ADHD as a solely biological determined phenomenon" (p. 36).

Similarly, Bringewatt (2011) interviewed young adults about their experiences of being diagnosed with ADHD as children and found that most participants perceived their diagnosis as simultaneously empowering and stigmatising. Being diagnosed helped them to better understand their thoughts and behaviours, to access treatment and academic support, and to make positive changes in their lives. Yet their diagnostic status was also a potent source of embarrassment and shame, with almost all participants hiding it not only from their classmates, but also from their siblings.

Bringewatt (2013) also found that children actively negotiated different mental health narratives, with some embracing medicalised accounts of their ADHD, and others resisting them. Many appreciated medical narratives because they reassured them that their behavioural difficulties were legitimate, common and "not their fault". Yet others were concerned about the stigma and labelling associated with medicalised accounts, and emphasised ways they had been supported that did not involve pathologising their differences to other children.

There is a similar paucity of research investigating parents' experiences of their children being diagnosed with a mental health condition. Again, much of the limited research has focused on ADHD (Harborne, Wolpert, & Clare, 2004; Singh, 2003, 2004). In a study of the mothers of boys diagnosed with ADHD, Harborne and colleagues (2004) found that while many mothers believed ADHD to be a biologically based condition, professionals and members of their extended families were more likely to believe the condition was related to psychological or social factors.

The implications of these differing perspectives were that mothers felt blamed for their son's difficulties. The mothers engaged in battles with professionals and family members over the nature of their son's difficulties, and experienced significant emotional distress.

The issue of blame - both self-blame and blame from others - was also prominent in the findings of Singh (2004), who interviewed mothers of boys diagnosed with ADHD. Singh found that an ADHD diagnosis offered mothers some relief from the burdens of guilt and blame, in that it shifted the locus of responsibility away from them and towards their son's brains - from "mother-blame" to "brain-blame". Those who started their children on psychotropic medications, however, were often subject to another cycle of mother-blaming, this time "accused of using Ritalin as a quick-fix to make their own lives easier" (p. 1203).

When compared to mothers, Singh (2003) identified very different views and experiences among fathers of boys diagnosed with ADHD. Fathers' perspectives on ADHD symptoms, diagnosis and treatment tended to fall into one of two categories: "reluctant believers" or "tolerant non-believers". That is, many fathers were resistant to medicalised accounts of their son's behaviours, identified with their son's symptomatic behaviours, and were opposed to treatment with psychotropic drugs.

Critical reflections

  • In your experience, how do children and families respond to receiving a mental health diagnosis? Have you noticed gendered patterns in these responses?
  • How do you "check in" with children and families about how they relate to the diagnostic labels that are applied to them?
  • Have there been occasions where you held different opinions about diagnostic labels to the families you were working with? How did you attempt to resolve this?