Diagnosis in child mental health
5. Beyond the diagnostic frame
It is not uncommon for mental health professionals to complete their clinical training - to be in the powerful position of applying diagnostic labels to those in their care - without much exposure to the critical perspectives outlined in this paper (Gambrill, 2014).
The diagnostic categories in documents such as the DSM-5 and ICD-10 can be presented as the only legitimate way of thinking about people's struggles. Many service providers and users alike are unaware of alternatives to diagnostic practice and the treatments that tend to follow from it. Most of these alternatives are not antithetical to diagnosis, but rather seek to ensure that the process of diagnosis unfolds within a broader frame, one in which people's contexts and histories are acknowledged alongside their symptoms.
The following is by no means an exhaustive list, but simply gives a sense of some of the models and practices that can provide alternatives or adjuncts to service providers in the child and family welfare sector who are concerned about the limitations of current diagnostic systems.
As opposed to diagnostic systems that focus on individuals' symptoms, psychosocial assessment tools account for a broad range of risk and protective factors that affect mental health, including physical health, behaviour and habits, home and school environments and family and social relationships.
A number of psychosocial tools have been developed for use with teenagers and young adults, such as the widely used HEADSS assessment instrument (Cohen, Mackenzie, & Yates, 1991). However, "despite their great potential to inform intervention planning, screening instruments that assess children's exposure to multiple, non-behavioural risk factors are rare" (Dwyer, Nicholson, & Battistutta, 2003, p. 699). Nonetheless, those psychosocial tools that have been developed for use with children - such as the Pediatric Symptom Checklist (PSC: Jellinek et al., 1988) and the Child and Adolescent Survey of Experiences (CASE: Sandberg et al., 1993) - offer service providers a structured way of understanding the different stressors in the lives of children and their families and may be used as standalone assessments or adjuncts to clinical diagnosis.
In the stepped care approach, a continuum of mental health services is offered, ranging from less intensive initiatives available to all, to increasingly intensive interventions for people who do not benefit from first-line interventions, or can be predicted not to benefit from them (Bower & Gilbody, 2005).
Stepped care both promotes the most efficient use of resources and helps to ensure that interventions are better matched to individual and population needs. Batstra and Frances (2012) suggested that a stepped care approach can be used to avoid premature diagnosis and over-treatment, especially in less severe cases where diagnosis is inherently uncertain. Such an approach encourages service providers to sit with uncertainty, as uncomfortable as this can be. For example, these authors suggest "watchful waiting - a period of continued assessment, monitoring, and scheduled follow-up with no pretence of a definitive diagnosis or active treatment" (p. 8). Diagnosis will normally be a part of a stepped care approach, but "stepping up" to a diagnosis occurs only after previous steps have proven insufficient.
Trauma-informed care can be described as a framework for human service delivery that is based on knowledge and understanding of how trauma affects people's lives and service needs (Harris & Fallot, 2001). It involves a range of practices that are directed by a thorough understanding of the profound neurological, biological, psychological and social effects of trauma and adversity on an individual, and an appreciation for the high prevalence of experiences of trauma and adversity among children in the community.
Trauma-informed care requires consideration of a child's whole environment and experiences, and of how his or her symptoms and presentations may be adaptations to trauma rather than "disorders" (Herman, 1992). Watt (2017) argued that the DSM is ultimately incompatible with trauma-informed approaches because in most cases it encourages service providers to focus on symptoms without consideration of the stressors that may have caused them. Others have suggested that trauma-informed approaches are an important adjunct to formal diagnosis, providing an explanatory power that is missing from purely descriptive documents such as the DSM.
Attachment theory posits that human beings are an inherently social species; that human neurobiology is geared towards the formation and maintenance of relationships (Bowlby, 1988). Attuned and consistent caregiving is associated with an optimal attachment experience, while dismissive or enmeshed caregiving is associated with insecure attachment. In any case, early attachment experiences are internalised by growing children, and, through the formation of internal "working models" of self and others, form the basis of their emotional, social and cognitive development.
Attachment-based interventions acknowledge that relational processes are central to the development, course and treatment of mental health difficulties in children and adults alike. This focus on relationality puts such interventions at odds with current diagnostic systems, which tend to be individualistic. As Denton (2007, p. 1146) argued, "Although DSM strives to apply the bio-psychosocial model, there is a notable and strikingly absent consideration of the role of relational processes and disorders in the development, maintenance, and manifestations of mental disorders."
Case study: Tom, age 4, and his mother Ruby, age 26
The following case study was provided by a clinician in the Restoring Childhood Program at Berry Street, which is a child-focused, trauma-informed program that provides therapeutic services for children and young people who have experienced family violence. This case study provides an example of a successful intervention that was sensitive to trauma, attachment and the broader relational context in which the child's mental health symptoms were manifesting. The practitioner used a psychosocial assessment, but delayed seeking a formal mental health diagnosis, instead engaging in a period of "watchful waiting".
Ruby and Tom experienced months of family violence perpetrated by Ruby's former partner. They were referred to the Restoring Childhood Program for therapeutic intervention, and the first step was a comprehensive psychosocial and risk assessment. These assessments revealed that they had moved house and ceased all contact with the perpetrator of violence.
In the first parent session, Ruby expressed her concern for Tom and "what he's been through", and voiced her fear that the violence had "scarred him". Ruby spoke about Tom's refusal to use a potty or toilet: "He just flat out won't go now, won't even try it." Ruby said Tom had been "almost fully toilet trained" when the family violence began, but feared that "he's gone backwards". Ruby made the connection that on a number of occasions she had taken Tom into the toilet to try to protect him from the perpetrator of violence "because it was the only door with a lock". Ruby wondered if, even in their new house, Tom was afraid of being in the toilet.
Tom's refusal to use the toilet was causing Ruby severe stress: she was tired of dealing with poo-filled nappies, her extended family were concerned about his reluctance to "be a big boy", and child care was unwilling to allow Tom to progress if he wasn't toilet trained. Ruby expressed her fear that "he's damaged forever and we'll never get past this - I can't handle it anymore". At this point, I was concerned that Tom's refusal to use the toilet was disrupting Ruby and Tom's attachment relationship.
As part of the Restoring Childhood model, we completed four Brief Relational Intervention and Screening after Trauma and Stress (BRISC) sessions consisting of a parent session, two dyadic play-based sessions, and a parent review session. Tom appeared to enjoy routine and consistency, and a focus on animals. I provided a bag of animal figurines and each session Tom carefully removed them one-by-one, identifying them, and telling us about their habitat and eating habits. With obvious pride, Ruby told me Tom was "obsessed with animals and knows more about them than anyone I know". Both dyadic sessions were taken up with this process, and during them I noted Tom made sustained eye contact, was talkative and friendly with me, but that his speech was limited beyond the animal-talk, and his pronunciation difficult to understand at times, with Ruby often providing interpretation.
In the parent review session, Ruby reported that Tom's acquisition of vocabulary had also "gone backwards" since the violence. While Ruby was impressed by his zoological knowledge, she also worried "he's really obsessed - that little professor thing". Ruby said she had done a Google search of "symptoms" as she wondered if Tom's "quirks" could indicate autism spectrum disorder (ASD), and asked my opinion. We discussed how children's trauma symptoms can be confused with the symptoms of mental health conditions, especially when diagnosticians are not fully aware of a child's trauma history. Ruby said, "it would be hard to tell which is his personality, and which is what's happened to him, and how they cross over," and I agreed.
Following the BRISC, Ruby and Tom were assessed as needing medium-term intervention to address Tom's elimination issues and the effect they were having on his primary attachment relationship. Ruby and Tom continued with weekly relationship-based, trauma-informed Child-Parent Psychotherapy (Lieberman, Ghosh Ippen, & Van Horn, 2015). At this point, I thought it was important not to rush into seeking a formal diagnosis of encopresis, ASD, or any other condition, but rather to follow a child-led process of watchful waiting to allow Tom to express more about the underlying meaning of his symptoms. I wondered if a diagnosis may locate the "issue" in Tom, whereas using a trauma-informed, psychotherapeutic approach could help Ruby understand Tom's reactions to the situation they had been in, and that we could continue to rely on their relationship to attend to Tom's needs.
At the start of every session, Tom brought each animal out of the bag, told us about its eating and living habits, and set them out on the floor; he was able to give me a concise description of the differences between African and Indian elephants which delighted Ruby. However, his refusal to use the toilet continued to cause grief for her. Once, when the therapy room filled with the smell of poo, Ruby burst into tears and said, "He's not even trying!" Tom looked up at her distressed face with concern, and Ruby quickly said, "Sorry mate, let's get that nappy changed".
In a parent session, Ruby reported having her own problems with enuresis as a child and described the embarrassment and distress this caused her. She worried Tom would be "picked on and teased forever if he doesn't get over this". Again, she raised the possibility of ASD, and I sympathised with Ruby's hope that such a diagnosis would provide a biological way to explain Tom's difficulties, and offer a clear treatment plan. Ruby had spoken to a general practitioner and was unsure how she would afford the specialist assessment fees, so we planned for her to talk to her case manager about potential funding. In the meantime, we decided to give Tom some more time; Ruby said, "I'm just not going to pressure him about it at all - I'll just stay calm." In Ruby's words, our aim was to "just try and help him with the trauma".
Our sessions saw Tom leading the way with the animals each week, with my reflecting to him and Ruby how much he was learning, and how much he had to teach us. Tom presented as excited to come to sessions, and calm during them. He would regularly do a poo in his nappy during the hour, and Ruby came prepared "just in case". She remained calm too, and as she changed his nappy we would continue the talk about the animals, asking "And where do they poo?" This made Tom laugh and he said, "In the jungle!", or "On the grass!", or "In the jungle toilet!" Ruby reported that Tom had been experimenting with weeing on the potty at home, with her making a special time mornings and evenings for them to sit together while he tried it. Ruby had bought some "big boy jocks" which Tom was wearing at home. Ruby said, "We're having some accidents but it's okay".
After eight sessions of a similar format, one day Tom surprised us - after setting out all the animals he said, "I don't want to play with the animals, I want to do something else". Ruby and I both jumped to follow this lead, joining in with a cooking game. At the end of the session I asked Tom, "Should we start with something different next week?" and he nodded. The following week, we started the session in the toilets of our office building "just to have a look".
Soon Tom began each session by doing a wee on the toilet before going into the therapy room. Ruby told me with a smile that they were having regular "poo parties" in the toilet at home before bath time, and proudly reported Tom had done "one poo in the toilet and we named it and then flushed it to go on its holiday". Tom laughed and talked about this with delight.
Weekly sessions continue, and Tom has moved up with his peers at kindergarten, and is using new words and phrases. He still wears nappies outside the home and Ruby says, "It's fine, I'm just staying chill about it". She is currently looking into ways to fund an ASD assessment and says, "I want to do everything I can for him so we will still do it - but I know he's doing okay at the moment". Tom is enjoying playdough, bubbles and other games in sessions, and always checks in with the animals.
Note: The names used in this case study are pseudonyms.
- Critical reflection on diagnostic systems is not a standard component of mental health training in Australia. Why do you think this is the case?
- In what ways do your professional experiences reflect the tensions or inconsistencies between current diagnostic frameworks and the alternative approaches outlined above?
- Do you apply alternative models or practices in your work with children and families?
How successful have these applications been?