Difficulties in school are very common in tuberous sclerosis complex (TSC). Regardless of the intellectual ability, 60% of kids and young adults with TSC will be impacted by scholastic issues. There are often early risk markers of later scholastic difficulties such as the delayed onset of language development, difficulties in social communication, or delays in other developmental milestones.
Many school-aged children with TSC will likely benefit from additional support and/or a personalized approach to their education. The TSC Alliance recognizes parents and young adults often faced many difficulties accessing these supports and are here to help. For additional resources to help you successfully navigate the education system and to connect with our educational advocates, visit our Educational Support page.
The consensus panel recommends the following:
Scholastic cluster recommendations
- Scholastic difficulties are common in TSC and should receive early and ongoing screening, followed by appropriate action.
- Delays in language development, counting, social/communication skills, and other developmental milestones may be markers for later scholastic difficulties.
- All children with TSC should be considered for an individual educational plan (IEP/IEDP) to support their learning.
- School-aged children with TSC should be supported in the most appropriate educational environment to meet their needs.
- In all educational environments, educators should use high-quality teaching strategies, Response to Intervention (RTI), individualized teaching, and appropriate accommodations to ensure student success in scholastic skills (e.g., reading, writing, spelling, and math) and in all other aspects of education.
- Educators should monitor the overall TAND profile of each child with TSC and consider how it may affect the child’s ability to access education.
- Plan for educational transitions.
Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.
