Mainstreaming Benefits Girls with Fragile X Outside Classroom, Study Suggests

Students with fragile X who spend more time in regular classrooms are more likely to perform functional tasks without help, a new study proposes.

These findings also reveal that, although the focus of fragile X research is often on males, females with fragile X syndrome need support and consideration of their specific needs in an educational setting.

The research article, “A Description of the Educational Setting Among Individuals With Fragile X Syndrome,” was published in the American Journal on Intellectual and Developmental Disabilities.

Males with fragile X syndrome can be more severely affected because of the disease’s X-linked inheritance pattern. They typically have lower cognitive ability and more severe behavioral problems than females with fragile X syndrome. For this reason, most studies have focused principally on males.

This has resulted in a knowledge gap about many aspects of the lifespan for females with fragile X syndrome. It is not well-understood whether females with fragile X syndrome need or are accessing the same educational services as males.

How the educational setting, including classroom placement and school performance, affect those with fragile X syndrome, particularly females, is poorly understood.

To address this, researchers from Emory University Rollins School of Public Health and the Centers for Disease Control and Prevention (CDC) examined data from a national survey of about 1,000 families affected by fragile X syndrome. They identified the educational setting, classroom placement, caregiver perceptions, and skill performance among a group of individuals with fragile X syndrome, one-fifth of whom were females (total number of participants 982: 79.4% males; 20.6% females).

They then assessed whether individuals with fragile X syndrome who have another co-occurring condition were more likely to spend a greater proportion of the school day outside a regular classroom than those fragile X patients who do not have the same co-occurring condition. These conditions included anxiety, attention problems, hyperactivity, autism, aggression, self-injury, depression, seizures, and developmental delay.

They also investigated functional skill ability in relation to the amount of time spent in the regular educational setting.

The researchers found that most fragile X students in the study:

• Currently were attending public school;
• Had individualized education plans or individualized family service plans;
• Had teachers aware of their fragile X diagnosis;
• Spent at least some time in a regular classroom;
• Had at least one educational setting modification.

In this study, most females with fragile X syndrome had individualized education plans and were unable to be in a regular educational setting for the entire school day. More than half of caregivers of females with fragile X syndrome reported that the child’s performance was substantially below grade level in math.

“Our finding that both males and females utilize special education services suggests that, although the focus of fragile X syndrome research is often on males, females with fragile X syndrome need support and consideration of their specific needs, particularly in an academic setting,” researchers stated.

The findings showed that younger students were more likely to spend most or all of their day in a regular classroom, but older students often spent more time in a segregated setting. The researchers found that males who spent more time in a regular classroom at a younger age were more likely to be able to perform various functional tasks later in life, such as writing their names, adding and subtracting, copying shapes, reading the restroom sign or a clock, and differentiating strangers.

Additionally, male students with certain co-occurring conditions (autism, aggression, and self-injurious behavior) were more likely to spend no time in a regular educational setting than male students without these conditions, suggesting that the amount of time spent in a regular classroom is affected by the severity of the disability.

“One implication that may arise from these results is that working with students to enable them to spend more time in a regular classroom, such as through management of co-occurring conditions or increased modifications including classroom aides, may help them be more independent later,” researchers said.

“However, we were unable to assess whether limited classroom time is a result of, a causal factor for, or incidental to having lower IQs or more behavioral challenges. Further study could examine this relationship and its effect on functional skill ascertainment,” they added.

Caregiver perceptions of student progress and involvement in shared decision making were similar for both male and female fragile X syndrome students. Notably, up to a quarter of the caregiver respondents reported that they wanted to be more involved.

The researchers propose that future studies should focus on identifying and understanding potential barriers to family involvement in educational planning so that schools can ensure all families feel that they are taking an active role in educational decision making.