Explicit and Systematic Instructional Reading Interventions for Elementary Students with SYNGAP1-Related Disorders and Similar Neurodevelopmental Profiles

Abstract

Students with SYNGAP1-Related Disorders (SRD) and similar rare neurodevelopmental conditions experience significant delays in language, executive functioning, and attention that directly impact reading acquisition. Despite strong evidence supporting explicit and systematic reading instruction for students with intellectual and developmental disabilities (IDD), little research addresses how these evidence-based practices translate to learners with ultra-complex and rare genetic profiles, such as SRD. ​

Research demonstrates that students with moderate to severe intellectual disability benefit from multicomponent reading instruction targeting phonemic awareness, phonics, fluency, vocabulary, and comprehension when delivered with intensity. However, classroom implementation is often inconsistent, and sight-word–only instruction remains prevalent. Additionally, emerging research indicates that parent-implemented interventions can increase instructional dosage and improve fidelity when supported through coaching.​

This 17-week action research study focuses on two elementary students with SYNGAP1-Related Disorders receiving district-adopted UFLI (University of Florida Literacy Institute) reading instruction. The intervention involves adapting UFLI to include increased explicit modeling, systematic sequencing, constant time delay, errorless prompting, and visual scaffolds. A structured home–school coaching model will be developed to align classroom instruction with parent-supported practice. Data sources include IEP goal analysis, pre/post progress monitoring reports, surveys, interviews, and students’ work samples. Anticipated findings include improved phonemic awareness and decoding accuracy, increased instructional fidelity across settings, and greater teacher and parent confidence in delivering structured literacy. Implications for practice include the development of a sustainable collaborative literacy model for students with rare neurodevelopmental conditions.

Literature Review

Methodology

Data Sources: Document review (IEPs, progress monitoring reports); Teacher & parent surveys; Semi-structured interviews; Student work samples; and Pre/post reading progress data​

Setting: (1) Elementary self-contained and (2) Home literacy environments ​

​Analysis:​

• Qualitative: Thematic analysis (semi-structured interviews, surveys)
• Quantitative: Descriptive statistics (pre/post comparison)​
• Triangulation across data sources

Intervention/Action Research Plan

Conclusion/Next Steps

Key Implications​

• Students with rare neurodevelopmental disorders can move beyond
  sight-word instruction.​
• Explicit + systematic + multicomponent instruction is critical.​
• Parent–teacher collaboration increases intensity and consistency.​
• Structured literacy can be adapted without lowering expectations.​​

Next Steps & Future Directions​

• Seek IRB approval​
• Expand to additional districts​
• Develop structured parent coaching toolkit​
• Create professional development modules​
• Share findings at special education conferences​

References

Afacan, K., Wilkerson, K. L., & Ruppar, A. L. (2018). Multicomponent reading interventions for students with intellectual disability. Remedial and Special Education, 39(4), 229–242. https://doi.org/10.1177/0741932517702444​

Aldosiry, N. (2022). Comparison of constant time delay and simultaneous prompting to teach word reading skills to students with intellectual disability. International Journal of Developmental Disabilities, 68(3), 317–331. https://doi.org/10.1080/20473869.2020.1771513​

Allor, J. Gregor, C. & Al Otaiba, S. (2023). How to implement evidence-based literacy practices with students with intellectual and developmental disabilities: Examples from a text-centered literacy intervention. DADD Online Journal, 10(1), 64–79.​

Conner, C., Allor, J. H., Al Otaiba, S., Yovanoff, P., & LeJeune, L. (2024). Early reading outcomes in response to a comprehensive reading curriculum for students with autism spectrum disorder and intellectual disability. Focus on Autism and Other Developmental Disabilities, 39(2), 71–83. https://doi.org/10.1177/10883576221137905​

Conner, C., Jones, F. G., Ahlgrim-Delzell, L., Walte, S., & Allor, J. H. (2022). What teachers know about teaching reading to students with developmental disabilities: A survey of special educators. Journal of Policy & Practice in Intellectual Disabilities, 19(3), 300–310. https://doi.org/10.1111/jppi.12406​

CURE SYNGAP1. (2026). What are SYNGAP1-Related Disorders? https://curesyngap1.org/what-is-syngap1/​

Heidlage, J.K., Lemons, C. J., Balasubramanian, L., & Dunnavant, L. (2024). Parent-implemented reading intervention for children with intellectual and developmental disability. Remedial and Special Education, 45(5), 267–278. https://doi.org/10.1177/07419325231211333​

Horn, A. L., Roitsch, J., & Murphy, K. A. (2023). Constant time delay to teach reading to students with intellectual disability and autism: A review. International Journal of Developmental Disabilities, 69(2), 123–133. https://doi.org/10.1080/20473869.2021.1907138​

Sermier Dessemontet, R., de Chambrier, A.-F., Martinet, C., Meuli, N., & Linder, A.-L. (2021). Effects of a phonics-based intervention on the reading skills of students with intellectual disability. Research in Developmental Disabilities, 111. https://doi.org/10.1016/j.ridd.2021.103883​

Sermier Dessemontet, R. S., Linder, A.-L., Martinet, C., & Martini-Willemin, B.-M. (2022). A Descriptive study on reading instruction provided to students with intellectual disability. Journal of Intellectual Disabilities, 26(3), 575–593. https://doi.org/10.1177/17446295211016170​

Whitbread, K. M., Knapp, S. L., & Bengtson, M. (2021). Teaching foundational reading skills to students with intellectual disabilities. Teaching Exceptional Children, 53(6), 424–432. https://doi.org/10.1177/0040059920976674​

Williams. A. N. (2025). A Review of reading interventions for students with moderate and severe intellectual disabilities. Journal of Special Education, 59(1), 26–37. https://doi.org/10.1177/00224669241268622​

From the Researcher

"I enrolled in the MS in Special Education program so that I can become a more effective and knowledgeable educational advocate for my daughter." - Rachel Jasiczek, MS ‘26, Ph.D.

For Further Discussion

This serves as an overview of the project and does not include the complete work. To further discuss this project, please email Rachel Jasiczek, who would be happy to answer any questions. 

Course Overview

In SPED 581: Research in Special Education, candidates submit a proposal for research based on an area of interest in special education. Upon approval of their proposal, they conduct research, collect data and present their findings.

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