Caregiver-Reported Attainment of Developmental Skills in Down Syndrome

Children with Down syndrome (DS) develop skills at varied rates. Data from one academic DS program estimating the timing of skill development in patients with DS were published in October 2024. This study builds on their research through review of caregiver-reported developmental data of individuals with DS.

As part of our larger study to validate the DS Health Measure, 542 caregivers of individuals with DS aged 0 to 21 years were recruited nationally to complete our survey. We described demographic characteristics, including Child Opportunity Index (COI) corresponding to participants' zip codes, communication style, therapies received, and caregiver coordination efforts. We calculated the percent attainment of 23 developmental skills for 27 age groups, and we compared COI and walking age.

Children with DS frequently attained gross motor skills; most children with DS aged 3.5 to 4 years (7 of 9), 4 to 4.5 years (10 of 10) and 4.5 to 5 years (12 of 13) walked independently. The proportion attaining language, self-care, and independence skills varied; most (69%) of our cohort primarily communicated with verbal speech. Most individuals with DS received multiple types of therapies, and most caregivers spent at least 1 to 6 hours coordinating supports and activities per month. COI did not correlate with walking age.

Our data build on the existing literature describing developmental skill attainment in DS. In collaboration with data from published studies, our findings can provide a foundation for the creation of a comprehensive developmental skills tool for DS.