Adapted Educational Strategies Can Help Children With Fragile X

Young children with fragile X syndrome can benefit in school when teachers, therapists, and other caregivers use coping techniques and educational strategies — some very simple — that are specially adapted for the students’ disorder.

Katie Clapp, the president and co-founder of the Fragile X Research Association (FRAXA), and Tracy Antonelli, a fragile X advocate from Pittsburgh, also are both parents of children with fragile X. The duo recently hosted a webinar with information on such strategies for educators, therapists, and other specialists who work with young children with the disorder.

Fragile X syndrome affects children’s development, leading to difficulties involving memory, abstract thinking, problem solving, and planning. These effects, combined with other features of the syndrome, such as social and behavioral problems, mean that children may require special educational strategies if they are to succeed in school. Oftentimes educators can struggle to provide the necessary help.

Such concerns led researchers and advocacy organizations, such as FRAXA, to identify a number of tips and educational strategies to help those living with fragile X to succeed in school at any level.

In general, successfully teaching children with fragile X involves adapting to how the students communicate and manage their emotions and anxieties. Additionally, teachers, therapists, and caregivers must adopt educational strategies that favor visual cues over verbal ones.

As with education in any setting, effective communication is critical.

Fragile X affects muscle tone in such a way that children’s speech may sound cluttered and slurred, making it difficult to understand them until one grows gets to know them. This also makes occupational and speech therapy a key component of a fragile X child’s education. Augmentative communication devices, when available, also can be key to learning for some fragile X children, the advocates said.

“Speech therapy is so critical,” said Clapp, whose son Andy has fragile X, “because they have a lot that they want to communicate and if they can’t communicate, they get frustrated. … Once they realize that they can say things and be understood, it just makes a world of difference.”

Indirect communication may often prove more useful in working with fragile X children than speaking directly with them, the moderators said. Because these children may avoid direct interactions, giving compliments in the third person and using their peers to model desired behaviors can make learning more comfortable and therefore easier for the child.

Even with speech therapy, effective listening by the educator, and indirect methods, such as looking for context clues that rely less on verbal communication, can pay dividends when teaching fragile X children, the moderators said.

“Visual cues are great because expression, verbal expression is especially hard,” Clapp said.

Such cues can include items such as icons, logos, color coding, numbering, and arrows that help draw a child’s attention to relevant information.

Clapp noted that it took her some time to realize that her son, Andy, understood everything said to him but had trouble getting his own words out. Visual aids, Clapp explained, helped to ease their communication.

Strategies for communication are for naught, however, if educators can’t catch and maintain their students’ attention. This is another area in which children with fragile X often struggle.

One means of catching and holding attention, Clapp said, lies in interspersing new data with familiar things that a child has already learned. That can ease the child’s anxiety and make the new information less overwhelming, particularly when working with a new subject.

Another strategy is to assign roles or tasks in which the child has an interest. This can make students feel more invested in an activity, giving them a measure of control over their environment.

As an example, Antonelli recounted that one of her two sons — both of whom have fragile X — would express more interest in going to school when given the task of taking attendance.

“If you can figure out what they’re interested in,” Clapp said, “and then use [that] in a concrete way, that would be great.”

Youngsters with fragile X often respond to environmental triggers differently from other children, which can lead to a great deal of anxiety for them. This makes managing their environment an important means of creating an education-friendly space.

Creating such an environment can include actions such as dimming lights and allowing the use of headphones to limit noise, or of helping to manage overwhelming social interactions, which have been linked to the aggressive and self-harming behaviors often seen with fragile X. The moderators note that adjusting the environment will mean different things for each individual child.

In terms of learning styles, children with fragile X adopt a general learning style that differs from many other students.

Fragile X children, for instance, learn simultaneously better than they do sequentially, meaning that they can process multiple new pieces of information at the same time, as opposed to learning things in a stepwise manner.

Along with visual aids, Clapp recommended so-called backward chaining as a way to teach fragile X children how to perform complex tasks that otherwise may be overwhelming.

Essentially, this consists of showing a complete series of steps, then having the children practice the last one. Once the children become proficient at that step, they are taught to perform the last two steps, then the last three, etc., until they can perform the sequence to completion.

Finally, transitions can pose special challenges to children with fragile X. These moments, such as changing teachers or switching to a different subject — or graduating to the next grade level —can provoke a great deal of uncertainty. This, in turn, requires a degree of emotional and anxiety support.

Actions such as providing warnings ahead of time, taking the time to answer a child’s questions about the transition, and allowing the child to position himself or herself comfortably — standing at the front or the back of a line as desired, for instance — can prove useful in these situations.

The exact best strategy will depend on each child, for which good communication is key. It may be helpful for parents and caregivers to meet with the teachers and therapists to share both strategies that have worked at home and areas of particular stress for the child. This is especially key at the start of a new school year.

“You can educate the next year’s teachers and that’s helpful because the transition with them is so hard,” Clapp said.

The complete video contains greater detail with more examples. In addition, the slides used in the webinar have been made available separately and can be freely downloaded.

“I feel like we’ve gotten to the point where we really do understand fragile X much better than we used to,” Clapp concluded. “We certainly don’t have a cure yet, but we do understand what strategies work.”

“Everything just takes a while,” Antonetti added. “And one day you’re going to be like, Wow, he did it, you know?”