Diagnosis – only part of the picture

It's because of my ADHD. That's how a teacher reported that one of her students would explain their behaviour to others. I was interviewing the teacher as part of the assessment of this young person by a CAMHS Neurodevelopmental Pathway. The young person did not yet have a formal diagnosis, and might not go on to receive one. Yet it seemed they were already using this diagnostic label to describe their difficulties.  

Upon meeting the family for their first appointment, it became clear that this was how the whole family had begun to understand their child's difficulties. I felt a pang of worry that this child would lose their self-understanding if they did not go on to receive a diagnosis. I wondered how the family would take the outcome, if it was decided that something other than ADHD might explain their child's strengths and difficulties. This is not an uncommon scenario. Families often seem to come into the pathway desiring a diagnosis for their child. 

Moving beyond diagnosis

How useful was this label for the family and others around them, to understand the child's difficulties? How did DSM-5 symptoms of ADHD present for that individual child? Were there things in the wider context of their life that might also explain some of their difficulties? If a neurodevelopmental diagnosis was given, could this lead to 'diagnostic overshadowing' in the future? It may be that a young person receives a neurodevelopmental diagnosis, but it seems rarely the case that there are no other biopsychosocial factors that may impact the young person's experiences. 

Whilst there has been an ongoing push within psychology to move beyond diagnosis, this has been controversial when thinking about neurodevelopmental diagnosis. In her 2010 blog post 'What's in a name?', Dorothy Bishop recalled previous debates around neurodevelopmental diagnosis, for example that a move past diagnosis can be seen as invalidating the difficulties individuals face. There are similar arguments to move from using the medical model in diagnosing discrete conditions, to taking an approach that creates an understanding of a person under the umbrella of neurodiversity. This follows increasing evidence that neurodevelopmental conditions might not be discrete (see Emilia Misheva in the August 2018 issue of The Psychologist). These movements centre around the belief that a diagnosis doesn't encompass a person's full functional profile as well as the possible impact of their life experiences.  

What do families want?

After listening to a 2019 recorded lecture by Dr Lauren Breese where she discussed some of the reasons that families may tend to focus on diagnosis, I recognised that I had seen this first-hand. It is understandable that families become so invested in receiving a diagnosis. It can validate the difficulties that the family and child have encountered. This can lead to relief if a diagnosis is offered, and feelings of disappointment, frustration and confusion when it is not. The family will still receive an extensive report exploring their child's strengths and difficulties and offering recommendations – the only difference is that they do not have the label. Yet that is often what families want from the assessment process. A diagnosis can provide an 'answer' to the difficulties they have faced. It can also lead the way to support strategies and treatment, acting as a gateway to services. It's easier to find help if you search 'how to support my child with Autism' rather than 'how to support my child who has separated parents, difficulty with working memory…'.

Diagnostic labels can be seen as tangible and less complex than a full formulation, which may make them easier to process for the young person and those around them. Labels can act as a quick way to create a shared understanding of the child and their differences. Without a name, a label, others might struggle to empathise. A diagnosis can also provide a great level of understanding to the young person, which may positively impact their self-esteem. 

Yet while a diagnosis can help young people and their families in understanding difficulties and acting as a gateway to services and strategies that can provide support, they may also narrow the scope when building a full understanding.

What can we do to balance this?

What can we do when families are searching for a diagnosis to understand their child, but as clinicians we can see the limitations of taking this approach? Shifting the power that a diagnosis has over formulation would require large changes in the structure and commissioning of health, social care, and education services, as a diagnosis often acts as the front door to these services. An increase in societal understanding of how difficulties can be explained and validated, without using the medical model, would also help to increase acceptance of how formulation fits alongside a diagnosis. Mental Health and Neurodevelopmental charities in the UK are already joining together to encourage changes like these through Embracing Complexity (www.embracingcomplexity.org.uk). Embracing complexity would allow individuals to access support for difficulties that are not part of their formal diagnosis. 

These changes are significant, and will likely take many smaller shifts in policy before they happen. So are there other ways to counter the strong focus that is placed on diagnosis in the meantime? 

The way that diagnostic pathways are sometimes labelled indicates that the final outcome of an assessment is a diagnosis. But the assessment process could be reframed to introduce the concept of neurodiversity. Pathways could emphasise that the aim is to look at the young person's strengths, difficulties and life experiences to create an overall understanding of them. Reframing the assessment in this way might show families that there is still something to gain from the process, even if there is no diagnosis. Where there is a diagnosis, the family might see that it is probably not going to capture their child's full profile. 

Another possible area of focus is to increase understanding of neurodiversity and formulation in other systems around young people, for example in schools. In a recently published report by Helen Curran, Special Education Needs Coordinators reported that some of the less experienced members of school staff had received no teaching on Special Education Needs (Curran, 2020). Learning about neurodiversity and neurodevelopmental diagnosis could help professionals to understand which of the child's difficulties are possibly part of their diagnosis, and which may be better explained by something else. Knowing the impact of Adverse Childhood Experiences (ACEs) may help professionals be better equipped to create a holistic understanding of the young person, rather than relying on the diagnosis. 

The feedback process

It appears that once the outcome of the assessment is fed back to families, the team's control over the assessment outcome is lost. It is then up to the family, school and other professionals who work with the child in the future to consider the diagnosis alongside a formulation. Making the most of the feedback process is one way for clinicians to highlight the value of the formulation as well as the diagnostic label. 

To improve this process, after initial delivery of the diagnostic outcome to the family, there could be a follow up to discuss the overall formulation, the child's strengths and other aspects of their cognitive profile. Receiving a diagnostic outcome can, understandably, be an emotional time for families. Two-part delivery could give families time to process the outcome before receiving the full assessment. It could also create a space to focus on the young person's strengths, as well as things they may find difficult.  

A diagnosis is just one part of the picture in creating an understanding of the young person. Members of my team reflect that complexity seems to be increasing in both neurodevelopmental profiles and family contexts in those who are seen across the pathway. This highlights the need to support parents and professionals in understanding that a diagnostic label is not an all-encompassing way to understand their child's difficulties. Even in cases where a neurodevelopmental diagnosis might seem to be the clear outcome of the assessment, formulation still gives a better understanding of a young person's functional profile. I don't think this is necessarily about moving past diagnosing neurodevelopmental conditions in young people, but rather considering how we as clinicians approach diagnosis and work to fit this together with formulation. A neurodevelopmental diagnosis should not act as the front page to a book that is not fully read. 

I acknowledge that I am early on in my career as a clinician, and would be interested to hear from others. Have other practitioners noticed this? How do you encourage an understanding of the young person that spans beyond their diagnosis?

Lauren McGregor (Assistant Psychologist)

[email protected]

Twitter: @LaurenJMc1

Note: This article originally appeared online 29 October 2020.