How useful is the term ‘Dyslexia’ and what impact does that label have on a person? John Hicks interviews neurodiversity expert Professor Amanda Kirby from Do-IT Solutions about how labels such as dyslexia should be viewed and used.
Since 2012, my career has steadily become more and more focused on supporting individuals with a diagnosis of ‘dyslexia’. In fact, a lot of my work as a strategy coach supporting individuals in the workplace has focused on their challenges associated with dyslexia. The more I have done this work the more a tiny little point has been nagging at me, the actual ‘label’ of dyslexia gives an unhelpful view of who a person is and what their challenges are. When I meet with my clients, I realise very quickly that my preconceived ideas of what my client’s challenges are ill informed by the terms ‘dyslexia’ or ‘dyslexic’. My clients each present their own version of what it means to be dyslexic as they are unique. The use of the label quickly gets put to one side and we start to focus on the person and not a condition.
So, it has been useful for me to investigate what the ‘label of dyslexia’ really does for us and there is no one better suited to helping me understand this than Professor Amanda Kirby, Chief Executive of Do-IT Solutions and campaigner for Neurodiversity as well as a respected researcher in this field.
Professor Kirby, how should we view the label ‘Dyslexia’ and for that matter any other label related to neurodiversity?
AK - “Labels such as dyslexia, ADHD/ADD, ASD, DCD etc serve as ‘short cut’ explanations that set out to describe a set of challenges to others but they do not describe the overall person. Using the label may be helpful in understanding why a person sees the world from their own unique perspective.”
JH - “Yes,I see what you mean as I have experienced this as a coach and counsellor. Each individual’s experience of relating to these terms seem to be different.”
So what does the label ‘Dyslexia’ really tell us?
AK - “Dyslexia mostly describes a difficulty with reading, literally and is often associated with difficulties with spelling, writing, and processing information despite having adequate exposure to learning.”
JH - “These do seem to be the main challenges, but I guess the uniqueness is in the ‘mix’ of how those challenges present and within which context. I like the use of the word ‘profile’ relating to neurodiversity.”
Does the label ‘Dyslexia’ give an accurate picture of one’s strengths and weaknesses?
AK - “No! Many children and adults have spiky profiles and may have other neurodivergent traits that present relating to Dyspraxia, ADHD, Autism, Developmental Language Disorder that don’t quite fit one diagnostic box. We need to also remember that spiky is also positive in lots of positive ways too. We can also be tall, short, be good at sport, music, chocolate, science and maths. We are a lot more than one label!”
JH - “That’s true. We always seem to be so tempted to categorise so that we can be certain that we know what we are talking about, but I guess that life doesn’t really work like that. A holistic view of a person is so much more beneficial when supporting them.”
When should the label of ‘dyslexia’ be used?
AK - “These labels are sometimes seen as helpful for accessing resources. It can be helpful to use the label as a part of an explanation that describes a person’s challenges and may be able to specify where this is rather than used as a general ‘tag’ term. Equally some people positively used it as a badge of pride to describe the strengths that come about from being ‘dyslexic’. We need to also remember that not everyone wants to have a label. It’s personal.”
JH - “For me, I can see how our support systems are set up upon labels. Using the label of ‘dyslexia’ is almost a ‘key’ to the door of support although even then getting support for dyslexia especially within the Education System (KS2 and onwards) is often difficult. At university level there seems to be a wealth of support available if one has a label of dyslexia given to them as a diagnosis.”
What is the psychological impact of being given a ‘dyslexia’ label for a person?
AK - “This is very dependent upon each person. For some it can be helpful, a relief and for others a source of anxiety. For some it can describe where support is needed.”
JH - “Again this is where the uniqueness comes in. Depending upon your perspective the impact will play out differently. I have had many a client say how they felt judged by others for the way that they think implying that they were not clever enough etc.”
AK - “The label of dyslexia can be helpful in confirming that an individual is not lazy or doesn’t care or can’t be bothered. In fact, sometimes having the label can bring about focus on a discussion to consider one’s strengths. In some environments it could be useful to use the label of dyslexia to sell oneself in a positive way, but we have to remember that no-one is ‘just’ dyslexic. As individuals we are far more nuanced and complex than this.”
JH - “We are all certainly complex and of course there is also a mental wellbeing aspect to experiencing the challenges of being dyslexic. What are your thoughts about that?”
“There is good evidence (and from my experience too) of higher risks of mental health challenges and it is important to be aware of this and consider ways to maintain wellbeing. Gaining a positive view of strengths and not beating yourself up is important. Support and strategies can make a real difference. We all use tools to help ourselves in our everyday lives. We use a can opener to open a can and a shopping list to remember what we need. So, it shouldn’t be shameful at all (in fact it is quite sensible) to utilise strategies that allow us to unlock the potential of the way that we think.”
