Fragile X and literacy: What’s the role of phonological awareness?

Although individuals with Fragile X Syndrome (FXS) are known to have literacy impairments, we have little research to draw from for reading instruction with this population—problematic,  because literacy skills have a huge impact on quality of life, employment, and social opportunities! This paper described two experiments meant to help bridge that gap.

Participants in the first study were adolescents with FXS aged 16 to 23, all males with intellectual disabilities. Their phonological awareness skills predicted their oral word reading performance, which provides evidence of an association between phonological awareness skills and reading skills in this population. The authors state, “Instruction targeting phonological awareness and phonics should not be ruled out for individuals with FXS” and recognize that we need more causal data here—in other words, we need to know more about the effects of phonological awareness instruction on individuals’ reading skills so that we can improve our intervention.

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On that note, the second study looked at feasibility—can individuals with FXS complete a phonological reading intervention that was originally designed for mainstream students? A small group, 8 individuals with FXS aged 7 to 23, participated in the HeadSprout Early Reading Program (HERP). Since there were no control groups or conditions, this study doesn’t tell us about effectiveness of the intervention. Instead, the authors found that individuals with FXS were able to access the web-based instruction and identified factors that enabled their success. Even though we need more information to know how best to approach literacy instruction with individuals with FXS, we should keep in mind the important relationship between phonological awareness and reading skills within this population.

 

Adlof, S. M., Klusek, J., Hoffmann, A., Chitwood, K. L., Brazendale, A., Riley, K., Abbeduto, L. J., & Roberts, J. E. (2018). Reading in Children with Fragile X Syndrome: Phonological Awareness and Feasibility of Intervention. American Journal on Intellectual and developmental Disabilities, 123(3), 193–211. doi:10.1352/1944-7558-123.3.193

Self-advocacy during communication breakdowns

This article shows that some children and teens with neurodevelopmental disorders are at a particularly high risk for not speaking up (or gesturing, signing, using AAC) to indicate when they don’t understand what others trying to say. Self-advocacy during communication breakdowns is particularly challenging for boys with comorbid Fragile X and Autism, and also challenging for those with Down Syndrome. In addition to clinicians simply being aware of populations at particular risk for challenges, this article is also useful because their tasks for measuring non-comprehension are well-described. Thus, clinicians could reasonably use some of the tasks as inspiration for probing non-comprehension and resultant communicative behaviors in clinical settings.

Martin, G.E., Bartstein, J., Hornickel, J., Matherly, S., Durante, G., & Losh, M. (2017). Signaling of noncomprehension in communication breakdowns in fragile X syndrome, Down syndrome, and autism spectrum disorder. Journal of Communication Disorders, 65, 22–34.