Approximately 45% to 60% of individuals with TSC develop cognitive challenges (intellectual disabilities), although the degree of intellectual dysfunction ranges from very mild to severe.
Some children appear to develop normally until the onset of seizures, when their progress slows or they actually lose developmental milestones. Individuals whose seizures continue unchecked even after treatment (intractable seizures) have a higher likelihood of intellectual impairment. While most individuals with TSC who have intellectual disabilities also have epilepsy, many individuals with TSC who have seizures do not have significant intellectual disabilities. Some individuals with TSC may have mild learning disabilities that are essential to consider when early interventions, school programs, or career choices are being made.
The Arc — The TS Alliance has a formal partnership with The Arc, which promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. They provide advocacy, training, and support services for people with intellectual and developmental disabilities through local Arcs.
American Association on Intellectual and Developmental Disabilities — Frequently asked questions on intellectual disability.
Disabled World — Cognitive disability: information on intellectual disabilities.
Healthy Place — Types of intellectual disabilities.