Behavior and Fragile X Syndrome
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.
- Fragile X Info Series: Your In-Person Visit to a Fragile X Clinic
- Behavioral Challenges in Fragile X Syndrome
- Sensory Processing and Integration Issues in Fragile X Syndrome
- Hyperarousal in Fragile X Syndrome
From Our Info Series
You may also want to browse our other available Info Series topics, each of which is available to read online or download and print on your home or office printer. All Info Series PDFs are available in English and Spanish versions.
A summary guide, checklists, and resources on how to prepare a child or adult for their first visit to a clinic.
This document notes commonalities in behavior challenges in Fragile X syndrome, including intensity, frequency, and duration. These behaviors are influenced by other factors, such as their environment and medical conditions, and it is critical to address behavioral concerns, including eating and feeding, with an individualized approach.
When possible, parents should be proactive in preparing their children for daily challenges. Learning to live within the bounds of sensory integrative and sensory processing issues may mean limiting exposure to too much intensity until a child can manage these situations. Learn more about treatments for sensory integration issues.
When problem behaviors occur, it is important to recognize that they may be caused by hyperarousal and to first try to identify any sources that may be overstimulating the person. The initial intervention should always be to try to reduce environmental stimulation. When that is not possible, it may be advisable to remove the person from the overstimulating environment. Learn more about treatments.
The How Toʼs of Sensory Diets in Fragile X Syndrome
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
From Our Blog
Home for the Holidays: Making the Visit Comfortable
A reader asks (and we answer): I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations. Do you have any tips on making the children feel comfortable?
Tips for Flying on an Airplane
Traveling with your young or adult child with Fragile X syndrome on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
When Disappearing Acts Are a Good Thing
Behavior can often be misunderstood and punished because the parent or caregiver doesn’t recognize its function for the child. Caregivers must look behind the behavior to learn what they’re trying to communicate.
Managing Anxiety … What Works And Why?
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
Enjoying Halloween with Sensory Challenges
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Concept and Use of a Sensory Diet
Leading pediatric occupational therapists, Tracy Stackhouse and Sarah Scharfenaker, provide an overview of the concept and use of sensory diet including a downloadable sensory diet template, and an example of a completed template for a sample patient.
10 Rules of Time-Out
I have found these 10 time-out “rules” to be the keys to success. They are based on the fundamental principles and incorporate adaptations for children with Fragile X syndrome by accommodating repetition, consistency, and predictability.
Visiting the Dentist
I learned pretty quickly that visits to a dentist were going to be a challenge for my son, Ian. I demonstrated the process over and over again. I helped him brush his teeth, encouraged him to brush his own teeth, tried different toothbrushes and toothpaste. I needed Bonnie.
Verbal Perseveration! Verbal Perseveration!
Let's discuss verbal perseveration (VP), a very typical and pervasive aspect of language in Fragile X syndrome. Does VP interfere with daily living and activities? You bet your boots it can!
Visual Wizardry: Using Visual Supports to Change your Child’s Life
Visual supports help translate the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present, so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten. Learning to use visual supports can help alleviate anxiety for the person with FXS and frustration for the person providing support.
Oppositional or Merely Anxious?
Children with and without Fragile X syndrome learn to maneuver their environments in order to survive and thrive. In order to discern whether a behavior is oppositional, or merely a reaction to anxiety, pay attention to your reaction.
Behavior and Fragile X Syndrome
When discussing FXS and behavior, the focus should be on the whole person. Some behaviors may be a result of the condition, of which many are positive.
“Happy Birthday” Meltdowns and Other Behavioral Conundrums
“Why does my child cry when people sing ‘Happy Birthday’ to her?” Many years ago when I first heard this from a parent of a girl with FXS, I thought it was rather strange and perhaps something unique to this child’s behavioral repertoire.
My Child Won’t Answer Questions!
Direct questions are typically the way we try to engage people in conversation. For children with FXS, we need to learn other strategies. It is critical to understand why it is so difficult for children with FXS to understand and respond to these questions, before we get to the how of getting answers.
Stopping the Stuffing — Therapy Programs for You and Your Child
If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing. Mouth stuffing for kids with FXS is usually an adaptive means of trying to succeed with eating.
Common Feeding Difficulties and How to Make Mealtime More Successful for Your Fragile X Family
Kristin Burgess Watson highlights some common feeding difficulties ranging from over-stuffing to picky eating that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.
Oral Sensory Seeking – Why is my Child Still Putting Things in Their Mouth? — Griffin Occupational Therapy
This post explores oral sensory-seeking behaviors and reasons why older children might continue to put things in their mouths.
Sensory Issues and Feeding — FeedingPlus
Nicola Pratt (SLP and feeding therapist) explains sensory issues and how they impact kids’ feeding and contribute to picky eating.