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Working with Difficult Behaviors

Children with fragile X often have a variety of behavioral challenges. Behavioral challenges are one of the main areas listed on checklists for the identification of persons with fragile X syndrome. Intervention for difficulties with attention, anxiety, and interpersonal relations requires careful planning for both medication and behavior modification.

Parents and educators may need to devise behavioral plans to help children with fragile X to cope with everyday demands of home, school, and community. Poor eye contact, hand flapping, and lack of awareness of social cues may cause difficulties in peer interactions, making inclusive educational placements more of a challenge. ADHD may also impede academic progress.

BehaviorFree Brochure:
Behavior and Fragile X Syndrome
A Guide to Effective Management

Behavioral interventions, including calming techniques and modified environments, are important components of the IEP for children with fragile X. Clear, concrete plans, with appropriate cues (e.g. visual signals for quiet mouths) and appealing rewards (e.g. stickers which lead to prizes) are essential for early childhood and school age children. Older adolescents and adults may need specific behavioral plans in vocational training, so that they can function in the work setting in the most appropriate manner. Adapting and Modifying are key for children with fragile X syndrome. See "10 Rules of Time-Out"

Many of the strategies used for children with ADHD who do not have fragile X syndrome are appropriate for those with fragile X. These include seating near the teacher and away from distractions, use of a private carrel at times, short tasks with the opportunity to move around often, visual cues for sequences of events, and interactive lessons, that do not always involve sitting and listening. 

Transitions and changes in schedule are especially difficult for many persons with fragile X and require careful planning by teachers and parents. Pictured schedules on the board or on velcroed cards can be used to lay out the sequence of the day. Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. Some unusual circumstances (such as a loud assembly) may call for time in a quiet room, with calming items such as a beanbag chair and a videotape, rather than the scheduled event.

Intervention for inappropriate behavior should always be planned with awareness of issues relating to sensory processing. Strategies designed to help achieve behavioral goals should include attention to the environment (lights, noise levels, activity level, etc.) and awareness of the sensory overload levels of each particular child. See Intervention for Sensory Integration Disorders for more information in this area.

Social intervention may help decrease the risk of later social, educational, and psychological dysfunction. In the school setting, social stories can be used describe a behavior that needs to be changed, with appropriate solutions for the child or adult to try. Some children with fragile X may see the school social worker or counselor in order to set social or behavioral goals.

Activities in the community, such as church attendance, going to restaurants and movies, and attending other crowded, unfamiliar places may pose challenges for families. Careful planning, beginning with descriptions at home of the activities and sequences that will happen can help the child or adult with fragile X to anticipate the situation. Visual cues, such as menus or church bulletins, can also help a parent explain what will happen in an upcoming event.

Medications may be necessary for attention deficit hyperactivity disorder (ADHD) and/or for anxiety or depression. Aggressive behaviors and violent outbursts, seen in some adolescents and adults with fragile X, can often be inhibited with the use of medication. Pediatric neurologists and therapists who are familiar with fragile X syndrome can evaluate and treat these symptoms with appropriate medication. Counseling and behavioral therapies often need to accompany medical intervention. For more information, see the Medication section.

Webcast Audio

The ABCs of FXS: Steps for New and Improved Behaviors by Karen Riley, PhD
A 65 minute recorded interview with an expert on behavior and fragile X syndrome, May 2007

 

 

Early intervention, occupational and speech therapy can help those with fragile X
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