A Description of the Educational Setting Among Individuals With Fragile X Syndrome

Abstract

Children with fragile X syndrome (FXS) display wide-ranging intellectual and behavioral abilities that affect daily life. We describe the educational setting of students with FXS and assess the relationships between school setting, co-occurring conditions, and functional ability using a national survey sample ( n = 982). The majority of students with FXS in this sample have formal individualized education plans, spend part of the day outside regular classrooms, and receive modifications when in a regular classroom. Males with FXS and certain co-occurring conditions (autism, aggression, and self-injurious behavior) are more likely to spend the entire day outside regular classrooms, compared to males without these co-occurring conditions. Students who spend more time in regular classrooms are more likely to perform functional tasks without help.

Figure 1.

The percent of students performing substantially below grade level by age category at time of Phase I survey and school subject among males (A) and females* (B) with fragile X syndrome from Phase I of a national survey of families affected by fragile X** (N = 666). *Percentages for females 18–21 years are not reported due to small sample size (n = 6). ** Phase I (time spent in a regular classroom) conducted 2007–2008

Figure 2.

The percent of students who can perform various functional tasks with little or no help by the amount of time spent in regular classroom (ascertained 3–4 years earlier) among males with fragile X syndrome who were 6–10 years old (n = 99; A) and 11–21 years old^ (n = 130; B), from a national survey of families affected by fragile X^^. Caregivers were asked to rate their child’s ability on functional tasks as (1) unable to do this; (2) needs a lot of help; (3) needs a little help; or (4) no help needed. The functional tasks displayed in this figure correspond to the child’s ability (rating of 3 or 4) to read or recognize their own first name (read name); write their own first and last name (write name); copy simple shapes (copy shapes); count up to 10 objects correctly (count to 10); add and subtract single digit numbers (add and subtract); in a new place, read or recognize signs to choose appropriate restroom (read restroom sign); follow a schedule; tell home address; appropriately differentiate between family/friends and strangers (differentiate strangers); read a clock; know value of coins and bills (value of money); and decide how to spend own money (spend money). Colored bars refer to the amount of time that respondents reported their child spent in the regular classroom during the Phase I interview and correspond to no time in a regular classroom (black bars), 1–60% of the time in a regular classroom (dark grey bars), or 61–100% of the time in a regular classroom (light grey bars). ^Percentages for males aged 11–21 years old who spent 61–100% of the time in a regular classroom are not reported due to small sample size (n=5) ^^Phase I (time spent in a regular classroom) conducted 2007–2008 and Phase II (functional skills) conducted 2011–2012 *Fisher’s exact test across categories of time spent in a regular classroom, p < 0.05