Developmental delay and intellectual disability

Developmental delay is present in all children with SAS to a varying extent. They may be late reaching milestones for motor development like sitting, standing up and walking (mean 22 months). Some will be toilet trained at a regular age but for most it will take longer, and some will not reach this stage at all. Their learning abilities vary, and in combination with the speech problems it may be a puzzle to choose the best matching form of education. For some children, the developmental delay is too severe to be in regular or special education. A small minority have profound intellectual and multiple disabilities (PIMD) and are dependent on care for every aspect of their life. These are usually the children with larger deletions involving more than just the SATB2 gene.

As a child gets older, instead of ‘delay’ the term intellectual disability (ID) is used. This may range from mild to profound, with most falling in the moderate to profound range. The following table gives a general idea of what this means.

Table 1. Levels of intellectual disability.

IQ is something that is frequently tested in people with intellectual disabilities. However, for daily functioning and the appropriate level of support, adaptive skills and social and emotional development are more important.

Management:
Early intervention with speech, occupational and physical therapy can stimulate development and improve quality of life. A multidisciplinary approach involving medical specialists, therapists and educators is often recommended.

The content provided by this website is for educational, communication and information purposes only and is not intended to replace or constitute medical advice or treatments. Always consult with your licensed healthcare provider.