When discussing Fragile X syndrome and behavior, it is important to note that – like every person – the focus should not only be on the challenging behaviors that you may see. It is essential that parents look at the whole person. There are behaviors that may be a result of the condition. Many of those behaviors are positive and it is those behaviors you will see most often.
Common Behaviors Seen
Children and adults with Fragile X syndrome (FXS) have a variety of behaviors. Some behaviors you may initially see:
- Hand flapping or biting
- Hyperactivity/short attention span
- Easily distracted
- Difficulty making eye contact
- Impulsive behaviors
People with FXS also have many strengths when it comes to behaviors. They:
- Have excellent imitation skills
- Have strong visual memories
- Like to help others
- May be social and friendly
- Want to please others
- Have a wonderful sense of humor
People with FXS can also display challenging behavior at various times in their lives, but they also respond well to behavior management strategies.
Causes of Challenging Behavior
Common causes of challenging behaviors in individuals with FXS include:
- Sensory processing issues: overload from noise, lights and tactile sensitivity
- Limited communication skills
- Desire to escape from an activity/request
Note that research has shown that the anxiety levels of those with FXS often rise faster and stay high longer than those without FXS.
It can be difficult to grasp why a particular challenging behavior occurs, but managing your child’s behavior depends on your ability to identify the cause. Note the context, frequency and intensity of the behaviors. Documenting the incidents can be very beneficial in the long run.
Identifying the cause of your child’s behavior will also prepare you to adapt in the future, because challenging behaviors tend to change over time, and your interventions may have to change with them.
Steps to Positive Behavior
There are many steps parents can take to help children with FXS develop appropriate behavior. The basic concepts of behavior can be considered using the ABC model:
A = Antecedent (what happens before the behavior)
B = Behavior (what the child does or says)
C = Consequence (what happens after the behavior occurs)
The ABC model is the basis for all behavioral interventions. Tracking the ABC’s of a person’s challenging behavior can help you see if there is a pattern of antecedents.
For example, you might use:
- A visual schedule
- Warnings of the change and what is to happen next
- A timer
- Additional time to make the transition
- A transition object
Interestingly, such strategies may benefit several areas of concern. For example, a visual picture schedule may help to reduce anxiety and behaviors that result from limited communication.
Another example: Use of a sensory diet may help reduce anxiety, sensory processing issues, and the desire to escape an activity.
It is important for everyone involved with the child to use a consistent behavioral management approach, paying particular attention to the child’s appropriate behavior. Consistently reinforcing appropriate behavior with praise or other rewards will increase its occurrence.
Options for Special Interventions
When children exhibit challenging behavior, most parents respond with techniques familiar to them. These might include stern reminders of consequences, redirection, and time-out. (Please note the NFXF does not support corporal punishment.) While these interventions may benefit a child with FXS, it may be necessary to utilize special techniques and/or specialists trained to understand the causes of behavior in order to develop appropriate responses.
Parents are faced with numerous recommendations and programs that claim to be the best way to help children with FXS. The terminology itself can be confusing. With terms such as “behavior modification,” “intensive behavioral programming,” “applied behavioral analysis“ and “contingent reinforcement,” how can you know which is right for your child?
To determine the best behavioral strategy for your child/family:
- Talk to your child’s doctor
- Visit a
- Talk to other parents and educational/behavioral specialists
- Observe different types of interventions
- Contact NFXF Director of Education & Support Services Jayne Dixon Weber at firstname.lastname@example.org
Using behavioral interventions is a critical decision. The techniques you decide to use can require a tremendous commitment of time and energy and a high degree of consistency among teachers and family members.
The Role of Medication
Medication can play a role in helping children acquire appropriate behavior. For example, medications that target anxiety can help individuals manage their behavior under stressful conditions. The appropriate use of medication is not intended to “drug” a child into compliance, but to allow behavioral interventions to be more effective.
All individuals are capable of improved behavior. Behavior may also improve over time simply because a child matures. At times, he or she may need additional help from you or a professional. If you are concerned about your child’s behavior, reach out for assistance sooner rather than later by talking with your child’s doctor or other trusted professional.
Additional Articles and Resources
- Behavior Modification in the Classroom
- “Happy Birthday” Meltdowns and Other Behavioral Conundrums
- Webinar: Let's Talk Behavior and FXS
- My Child Won’t Answer Questions!