Dr Jamie Galpin considers the issues around diagnosis, labels and being ‘normal’.
Debates around the validity of diagnoses are not new, and few diagnoses have been more fiercely contested than dyslexia. Over fifty years ago, Davis and Cashdan highlighted why the term provides such potent fuel:
“where aetiologies [causes] are but imperfectly understood, and where methods of treatment are still a matter of argument, it is not surprising that controversy should rage over appropriate groupings of symptoms and the terminology most suitable for them.”
Despite improvements in methodology, and undoubted progress in our understanding of different needs, the causes for dyslexia are still imperfectly understood – and so debates continue. Typically, the focus is on the extent to which dyslexic individuals differ from non-dyslexics; whether their difficulties are discreet and sit within a clear category apart from other needs, or whether they represent an arbitrarily-defined section of continuously distributed skills.
Unsurprisingly, such considerations are highly emotive. As they spill over from research into practice, participants become people. Findings have real-world implications in terms of access to support and self-esteem. However, the fevered focus on terminology may take attention away from what would be a far greater prize: systemic change that ensures all educational environments support students to flourish.
Advocacy groups work tirelessly to stand up for pupils who do not receive the support they require. A solid label provides a strong focal point. A soundly constructed, medically-defined category (‘dyslexia’ as opposed to ‘reading disability’) can effectively tackle normative misconceptions that reading difficulties are an indicator of laziness or low intelligence.
However, too great a focus on categorial definitions can lead to these difficulties becoming pathologised. An abundance of effort goes into strengthening the legitimacy of the diagnosis through searches for markers of distinction. New barriers to support may than arise as certain groups become increasingly situated outside the norm. Teachers can feel less skilled to support such a group, and a ‘normal’ school is no longer deemed able to meet these distinct, special needs.
Rather than the validity of the norm being questioned, labels can serve to reinforce the misconception that there is a normal child and a normal way of learning. Inherent variability becomes translated into disorders or deficits. Implicit here is the idea that diagnoses explain something undesirable. When the focus is an individual biological problem, labels can unintentionally serve to reinforce “normalcy’ as a legitimate concept. One could argue, for example, that dyslexia necessitates an acceptance of normative assumptions of literacy. The normal child is a relatively modern creation, only appearing in the last century or so – and yet it is rarely questioned.
There are further unintended consequences around the need for defined groups, both for those who do and do not receive diagnoses. For those who do, there may bless chance of being perceived as unintelligent or lazy – a benefit that is hard to dispute given the relief it can bring in helping people understand their own struggles. However, the fragility of such legitimacy is brought into relief when questions arise around the validity of the diagnosis.
Efforts to address this fragility through the search for more ‘concrete’ biological explanations lead to further problems. Framing a difference as being within the brain, or referring to a neurologist as part of a diagnostic process, implies a neural basis for deviation from the norm – i.e. an abnormal brain. Such biological , essentialist explanations can lead to a fatalistic response to experiences of challenge. These can be pathologised through an individualistic, deficit-explanation and lead to a diminished self-concept. These explanations may also lead to negative perceptions amongst staff in schools, with recent research indicating that children labelled with dyslexia hold lower beliefs about their academic ability than peers without the label. Parents and teachers echo this perception (Knight, 2001).
Those who do not receive diagnoses may be spared the low expectations brought by the dyslexia label, though this group of struggling readers will still sit outside the norm because typically reading should not be a such a struggle. Other labels may be deployed to explain their failure to learn as they should: lazy, defiant, no boundaries at home. These labels can become internalised, self-fulfilling prophecies, and arguably lead to even greater negative outcomes, both practical and perceptual, than those whose struggle is translated into dyslexia. Furthermore, they are less likely to receive the support they need.
Efforts to understand how dyslexics differ from others who struggle in similar areas reinforce the difficulty in untangling a complex interplay of factors. As the 2019 All Parliamentary Group for Dyslexia and Specific Learning Difficulties reported, “Whilst there may be some commonalities associated with dyslexia, each individual is likely to be different.” (Hodgson, Addington & Smith, 2019, p.7.) This understanding represents an important paradigm shift, a recognition of the inherent variability within all people – our unity in our diversity – and a move away from binary representations of normal/abnormal. This position was brought to public awareness as a result of the neurodiversity movement.
In academia, transdiagnostic (i.e. human) approaches are recognised as a better way of understanding strengths and needs (Astle, Holmes, Kievit & Gathercole, 2021). They embrace the complexities around interactive biopsychosocial development. In light of this, single diagnostic pathways founded upon a binary divide between The Norm and The Different, are understandably unstable, with increasing uncertainties around validity affecting diagnostic confidence.
Inconsistent practices relating to diagnosis, including evidence that contextual factors such as socio-economic status can strongly influence the likelihood of receiving a diagnosis (Macdonald & Deacon, 2019) call the viability and utility of differential diagnoses into question.
In the current educational context, where access to support is often predicated on diagnosis, we must consider whether it is ethically acceptable to sort students into differently labelled jars – particularly if the goal we are striving for is the advancement of equity for all.
The question is: where do we go from here? In a blog post on a similar topic, written over a decade ago, developmental neuropsychologist Professor Dorothy Bishop noted that we seem to be “stuck between the proverbial rock and hard place”. What has perhaps shifted in the last decade is our faith in the norm. The proliferation of labels, and greater awareness of inherent variability, has brought ‘normal’ into the spotlight. As more children and young people are situated outside it, normal becomes the outlier.
Rather than highlighting how certain groups differ, we should recognise that we are all different. Support does not have to be better for any one group: it must be better for everyone. It is by ending our current concept of normal that we end the name game.
It is not in doubt that there are children and young people who have significant difficulties with certain ways of learning, but this should be recognised as normal. That is not to trivialise their needs, but bring them back into the realm of universals. From this position we see that “dyslexia is an experience that arises out of natural human diversity” (Cooper, 2006, p.24).
If we understand and appreciate “the vast natural differences that exist from one brain to another” (Armstrong, 2010, p.3), then no child requires a label to legitimise their unique strengths and needs. We can progress from focusing on the piecemeal adoption of isolated interventions. We can change how we conceptualise and deliver education to allow every child and young person to flourish. Then debates around “what’s in a name” can fade, replaced by a focus on how to ensure that the starting point for everyone’s education is an understanding of the individual.
A good place to start: “What’s your name?”
Author: Jamie Galpin
Jamie Galpin
Dr Jamie Galpin is an Education Officer at nasen - a charity that supports and champions those working with, and for, children and young people with SEND and learning differences.
Follow nasen on Twitter @nasen_org
