Fostering Academic, Living Skills in Early Childhood Increases Fragile X Patients’ Adult Independence

Interventional strategies that foster the development of academic and living skills are necessary to assure the independence of adult fragile X patients, especially those with autism, shows a U.S. study based on a survey.

The study “A comparison of functional academic and daily living skills in males with fragile X syndrome with and without autism” was published in the journal Research in Developmental Disabilities.

Adaptive behaviors, such as functional academic and daily living skills, are essential for independence in adults with intellectual and developmental disabilities. However, not much is known about these skills in patients diagnosed with fragile X syndrome, the most common form of inherited intellectual disability.

Researchers assessed parent-reported academic and daily living skills of males diagnosed with fragile X syndrome and compared them to fragile X patients diagnosed with autism — a condition that affects up to one-third of fragile X patients — and other common co-morbidities.

These patients have poorer communication and social skills, a high number of behavioral problems and greater cognitive impairments than those diagnosed with fragile X only.

The team analyzed data from a large, U.S. national fragile X family survey where parents of 534 male fragile X patients, age from 5 to 67, were asked to rate their child’s ability level in five functional academic skill areas — time and schedules, money, math, reading, and writing — and daily living skills related to five areas — hygiene, cooking, laundry and housekeeping, transportation, and safety.

Data from daily living skills was restricted to patients older than 14 years (363 patients).

Responses were rated on a scale from 1 to 4, in which 1 stands for “does not do this,” 2 for “needs a lot of help,” 3 for “needs a little help,” and 4 for “does this without help.”

To assess the severity of fragile X, researchers evaluated the presence of other common co-morbid conditions, including autism.

To assess patients’ levels of independence, parents were asked about their living conditions – alone or sharing with roommates, parents or in a residential treatment facility – and employment.

The results showed that a large percentage of males with fragile X are independent adolescents and adults with functional academic and daily living skills.

“The majority understood the basic notions of time and money, as well as its importance, identified numbers and counted to 10, identified familiar words and signs, used a pencil, wrote their name, copied simple words and shapes, told their name and age, and differentiated familiar people from strangers,” researchers wrote.

Patients who were 14 and older mastered daily living skills, including hygiene, cooking, laundry and housekeeping, transportation, and safety skills.

Increasing age was linked with a higher performance in all functional academic and daily living skills.

The level of functional academic and daily living skills was higher, in general, for males with fragile X only and for those with fewer co-morbid conditions, compared to patients with autism and those with more co-morbid conditions.

“These data provide important information on the mastery of both foundational and more complex adaptive skills in males with FXS,” researchers wrote. “These findings point to the need to focus interventions to support the attainment of independence in males with FXS,” they concluded.