Intellectual Disability

Intellectual disability is also referred to as ‘learning disability’. It’s a term used when there are limits to a child’s or adult’s ability to learn at an expected level and function in daily life.

Everyone with Dravet Syndrome has some degree of intellectual disability. As with other features of the condition, there’s a spectrum.

Intellectual disability can cause a child to develop and learn more slowly or differently to someone who is developing typically. As a child grows older, they can be slower to gain new skills, such as language, or may not develop those skills at all. No two people are the same.

There are different types of intellectual disability, which can be mild, moderate, severe or profound. You may also hear the term ‘profound and multiple learning disability’ which can also apply to some people with Dravet Syndrome.

Children’s development

In Dravet Syndrome, someone’s intellectual development appears typical in the first year of life and when their seizures first start. Over time, usually by two to three years old, a developmental delay becomes noticeable. As a child gets older, their general development is affected. Some early skills and abilities may be lost, and the comparative gaps with neurotypical peers will continue to widen.

Many children with Dravet Syndrome do make slow but regular developmental progress into their early teens. However, by the time they reach adulthood, around 80% live with moderate to severe intellectual disability. It’s rare that any adults with Dravet Syndrome will be able to live independently. They will require full-time care and support for life.

Coping with intellectual disability

Accepting that their child has an intellectual disability can be one of the most difficult aspects of a family’s journey with Dravet Syndrome.

Sadly, there are currently no treatments available to improve cognition in Dravet Syndrome. Cognition is ‘the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses’.

However, therapies, such as speech and language and occupational therapy, can be helpful when it comes to developing a person’s ‘adaptive skills’. These include, washing, dressing, making friends, managing money, and other skills needed in daily life.