Dyslexia and Literacy Difficulties: What Difference Does a Label Make?

By Dr Rosa Gibby-Leversuch, Educational Psychologist

When I was studying for my doctorate I had the opportunity to informally interview my brother for a Problem-Based Learning project about dyslexia. This was when I heard about the positive difference that he felt his dyslexia diagnosis had made to his life when he (eventually) received this at university. I was pleased to hear about the positive impact it had for him, but also left frustrated. What about his deeply unpleasant school experiences and everything that happened prior to his going to university? I’m sure key people were aware of his needs before then.

My wonderings developed over the next year and turned into a plan for thesis research, where I was motivated to explore the experiences of other young people with similar needs and hear directly from them. I was not just interested in those who had felt recognised and supported through the process of diagnosis, but also those who might have struggled with literacy without being diagnosed. Working with schools to recruit participants who were identified as having literacy difficulties but no diagnosis of dyslexia proved quite difficult. After some persistence sharing my recruitment materials, I ended up with a sample for my online survey with roughly equal numbers of participants who self-identified as either having dyslexia, having experienced difficulties with literacy learning or never having had any particular literacy difficulties.

In my online survey I introduced vignettes of two fictional young people, Charlie and Colin. Charlie had a diagnosis of dyslexia and Colin had literacy difficulties. Both vignettes contained descriptions of slower progress at school, finding things hard and ongoing reading and spelling difficulties.

What I found was that young people perceived Charlie and Colin quite differently. The label seemed to change how others saw them, the support they needed and even their potential. The idea of there being biological, brain-based and genetic differences between the two boys came through strongly and this seemed to affect the attributions that people made and their sense of the permanence of the needs. Charlie’s needs were seen as life-long, but not his fault, whereas Colin was seen as more likely to be able to overcome his difficulties despite being described as “unintelligent” and “lazy”.

I went on to interview a small group of young people who did have a dyslexia label. They were very clear about its importance to them; that it had changed other people’s views, and even their views of themselves, for the better (helping them move away from alternative labels such as “stupid” and “lazy”). For these participants, it was also directly linked to the support that received: no label, no support.

Despite these positive experiences of the label, there was still a clear sense that what really mattered was the encouragement, resources and support that they received, not the label itself. The participants also spoke of the downsides of the label, for example, giving little useful detail about the individual themselves, their specific needs or type of support required and the potential for people to hold lower academic expectations. Some of the participants even spoke of the unequal access to dyslexia assessment and potential for some students not to get the help they need.

So what now? My findings highlighted young people’s perspectives within wider research that has also identified both the advantages and disadvantages of the dyslexia label (e.g., Gibbs and Elliott, 2015; Polychroni et al., 2006; Gibson and Kendall, 2010; Glazzard, 2010). We know that the medical labelling of educational needs can be both “empowering and problematic” (Solvang, 2007).

My findings shaped my own perspective on this topic area. I can see more clearly now that students with literacy difficulties appear to be at risk of negative judgements made by others (including their peers), regardless of their label. For the young people on the receiving end of this, I believe that the problem lies with the negative judgments and assumptions, not with the label. My work has shown me that views about the label itself are conflicting and varied. Labels like dyslexia can be valued, but also pose problems.

Elliott and Gibbs (2008) argued that attempting to distinguish between dyslexia and other literacy difficulties is potentially discriminatory. In my Educational Psychology practice I feel it is important for schools and professionals to be aware of this potential for discrimination, whether it be linked to differences in resource allocation, or the ways in which labels may unconsciously impact people’s attitudes, beliefs and expectations.

I believe that when we are working with young people, we need to carefully consider the purpose of assessment and any labelling. Are we assessing in order to figure out how we can best support the student? Or are we doing it in order to categorise their deviation from the expected “norm”? If the former is the case, professionals may prefer to adopt the approach of “assessment for intervention rather than assessment for diagnosis” (Elliott & Grigorenko, 2014, p.580). My experience has shown me that students want to be treated as individuals, have their difficulties recognised, not be blamed for them and feel supported.  I have found this to be true, regardless of any label.

My research and wider work has inspired me to hold some clear aspirations in this area. I hope readers of this blog with resonate with these as I have listed them:

• Let’s make decisions about labelling on an individual basis collaboratively with young people and families.

• Let’s not treat the term dyslexia as a throw away line in a report but make sure that the young person understands what it means for them, within the context of their own individual needs.

• Let’s make sure the “Charlies” have a strong sense of agency and know that they will make progress, even if it is going to mean more hard work. And let’s not forget about the “Colins” who may not have (or want) this label but still need the support, encouragement and understanding.

Labels may be beneficial for those who have access to assessment, but improving understanding and inclusivity has the potential to change attitudes and benefit ALL children and young people.

With many thanks to my thesis supervisors at the University of Southampton, Brettany Hartwell and Sarah Wright.

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References

Elliott, J. G., & Gibbs, S. (2008). Does dyslexia exist? Journal of Philosophy of Education, 42(3–4), 475–491. https://doi.org/10.1111/j.1467-9752.2008.00653.x

Elliott, J. G., & Grigorenko, E. L. (2014b). The end of dyslexia? The Psychologist, 27(8), 576–580.

Gibbs, S., & Elliott, J. (2015). The differential effects of labelling: How do “dyslexia” and “reading diffculties” affect teachers’ beliefs. European Journal of Special Needs Education, 30(3), 323–337. https://doi.org/10.1080/08856257.2015.1022999  

Gibson, S., & Kendall, L. (2010). Stories from school: Dyslexia and learners’ voices on factors impacting on achievement. Support for Learning, 25(4), 187–193. https://doi.org/10.1111/j.1467-9604.2010.01465.x

Glazzard, J. (2010). The impact of dyslexia on pupils’ self-esteem. Support for Learning, 25(2), 63–69. https://doi.org/10.1111/j.1467-9604.2010.01442.x

Polychroni, F., Koukoura, K., & Anagnostou, I. (2006). Academic self-concept, reading attitudes and approaches to learning of children with dyslexia: Do they differ from their peers? European Journal of Special Needs Education, 21(4), 415–430. https://doi.org/10.1080/08856250600956311

Solvang, P. (2007). Developing an ambivalence perspective on medical labelling in education: Case dyslexia. International Studies in Sociology of Education, 17(1–2), 79–94. https://doi.org/10.1080/09620210701433779