Trialing a New Intervention to Help Children with Fragile X with Spoken Language

School-aged boys with fragile X syndrome (FXS), the leading inherited cause of learning disability, often display marked delays in the ability to use spoken language to communicate with others. These delays in spoken communication can create challenges academically, socially, and in other aspects of daily life. Therefore, in the current pilot study, we aimed to do an initial test of a behavioral intervention designed, to improve the spoken language skills of school aged boys with FXS. The best way to learn language is for a child to be interacted with in a conversational way (simulating a to-and-fro ‘conversation’, even if the child is not yet able to respond with verbal language: also known as “conversational interactions”), which includes high quality verbal input. However, achieving a sustained interaction is often difficult to achieve with boys with FXS given that they often have difficulty paying attention and staying on focus in a conversation, and the fact that they may be very repetitive in their speech.

In this study, we trained mothers to interact with their sons with FXS in ways that are known to support language learning. We created wordless books, with bright illustrations, which mothers and children could read together, to serve as the context for practicing sustained and on-topic conversational interactions. Shared book reading maximizes the kinds of experiences that support spoken language development in several ways. First, it provides children with numerous opportunities to hear diverse vocabulary embedded in a variety of grammatical constructions. Second, it provides visual supports for maintaining shared interest and attention. Finally, it provides lots of opportunities for sustained turn-taking around a shared topic of conversation.

During the joint reading, mothers were coached by a remote trainer (via a Bluetooth ear piece) who guided them on the best ways to encourage the child’s language. Each mother also received a script for each book to provide some examples for things she could say about the story and suggestions for vocabulary words she could use.

There were 3 main techniques that the mothers were taught:

  • Recasting: this is a technique where the mother repeats back to the child a more advanced or a corrected version of what the child has just said, in a way that flows with the conversation. E.g. if the child says “climb wall” the mother could say “oh yes, look the boy is climbing over the wall”.

  • Use of wh-questions (such as “who”, “where”, “when”) to prompt the child to answer specific questions about the content of a story. This helps to focus the child’s attention on important details of the story to help them to be able to understand and re-tell the story.

  • Fill-in the blank prompts (e.g., “he’s climbing up the _______”) to provide a sentence frame that helps a child to use a vocabulary word that he knows but may not be able to use independently.

Three boys with full mutation FXS participated in the intervention with their biological mothers. The boys were between 10 and 12 years of age. All child participants were English speaking and produced at least 3-word spoken utterances on a daily basis. The intervention took place over 12 weeks, each week the mothers received:

(1) a coaching session during which the clinician provided feedback to the mother while she interacted with her son around the shared topic of the wordless book;

(2) a homework session during which the mother video-recorded the parent/child book sharing interaction and sent it digitally to the clinician; and

(3) a feedback session during which the clinician reviewed the homework session with the parent and set goals for the next week of the intervention.

The results of the trial were promising. After the intervention both mothers and children spoke more during the joint reading sessions. Because of this, the average length of times that the mothers and sons read the story together increased from 4 minutes, before the intervention, to 14 minutes. All of the boys used more words during the reading following the intervention, and two spoke for longer in each individual utterance. The mothers gave good feedback about the intervention, and were particularly happy that it helped them to have longer interactions with their sons.

This study is important because few language interventions have been developed and tested for school-aged boys with FXS. By involving a parent in the delivery of the intervention, we maximized the likelihood that the intervention could be used regularly and that the strategies could continue to be used by the parent following the end of the trial. The ability to deliver an intervention by means of distance video-teleconferencing makes this approach cost effective and means that people ein different locations would be able to access it. Overall, results of this pilot study suggest that a parent implemented intervention based on shared story telling can be an effective way to support the spoken language skills of school aged boys with FXS. In the future, the intervention could be used with younger children by modifying the selection of books and could be implemented in the classroom by a teacher or educational aide.

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