Approximately 45% to 50% of people with tuberous sclerosis complex (TSC) develop intellectual disabilities. However, profiles of strengths and weaknesses are highly variable person-to-person and are often very uneven within an individual regardless of their overall intellectual ability.
Even in people with above average and high intellectual abilities, the rates of specific neuropsychological deficits (e.g., in attentional, memory, or executive skills) are very high and can be associated with significant challenges in daily life (e.g., in school, relationships, or the workplace). This is even more likely to be the case for those with TSC known to have neurodevelopmental disorders such as autism, attention deficit hyperactivity disorder (ADHD), or learning disorders.
Understanding your/your loved one’s profile can help to understand current difficulties and predict future ones. Performing evaluations in preparation for transitions in school, in preparation for post-secondary training or for the workplace and implementing neuropsychological intervention plans is valuable.
The consensus panel recommends the following: