Behavior and Fragile X Syndrome
When discussing Fragile X syndrome and behavior, it is important to note that — like every person — the focus should be on the individual. Many behaviors are positive, and it is those behaviors you will see most often in addition to challenging behaviors. Behavior problems serve a purpose (or a function) and are often a form of communication. Addressing behavioral challenges in an individual with FXS should start with a comprehensive evaluation. A proactive approach with appropriate supports and accommodations will likely foster positive outcomes and set up the individual with FXS to succeed in their home, school, or community.
- 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.
Treatment Recommendations
This document provides information about what language development may look like for individuals with FXS. We discuss receptive language (what is understood), expressive language (how an individual communicates), pragmatics (how language is used), and speech (how sounds and words are produced).
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.
Webinars
Multidisciplinary Treatment of Fragile X Syndrome (FXS) — Webinar
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Navigating the Challenges of Puberty and Adolescence for Youth with Fragile X Syndrome — Presentation
This session discusses specific challenges that arise during puberty and adolescence while also providing youth and their caregivers with some strategies and resources to assist in navigating the teenage years. Presented by Holly Harris, MD, FAAP and Dinah Godwin, LCSW.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Common Behaviors and Available Treatments Across the Lifespan — Presentation
How to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips are shared that families can easily implement with their children or adolescents.
Experts Discuss Females with Fragile X Syndrome — Panel
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A. Join Jennifer Barber, Susan Howell, Barbara Haas-Givler, Nicole Tartaglia, Rebecca Shaffer, and Laurie Bridges.
Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
Emotional Regulation in Fragile X Syndrome — Presentation
Rebecca Shaffer discusses the signs of emotion dysregulation in Fragile X syndrome and ways to respond and practical strategies for families and caregivers.
Encouraging Early Communication: Strategies for Caregivers — Presentation
This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development. Presented by Anne Hoffman from Rush University Medical Center.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
An Unregulated Life is No Laughing Matter — Webinar
Tracy Stackhouse teaches us the importance of self-regulation in individuals with Fragile X syndrome.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
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.
My Child is Home… Now What?? Play Skills
In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.
My Child Is Home… Now What? Managing Behavior
In this webinar, Rebecca Shaffer walks us through what your child is telling you, strategies to prevent the behavior, reinforcing good behaviors, and building new skills.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Letʼs Talk Fragile X Syndrome, Autism & Behavior — Webinar Replay
Developmental FX joins us to provide insight and advice on Fragile X and its connection to autism and behavior.
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 the Fall (including 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.
Doggone It … Mantras Are Great for Learning!
Mantras, like positive affirmations, really do have power. Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus on thinking and action.
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!
Video Modeling
Therapy is a fun, creative process – one of the reasons that we have been at this for so long! One of the challenges of being a therapist is staying on top of the ever-emerging intervention techniques that come into our practice and making them work for individuals with FXS.
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.
Teaching Your Child to Ask for Something
One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something — like a favor or request — in an appropriate way. This [...]
Get to Know Your Local Firefighters
Getting to know your local firefighters can help you and your children with Fragile X syndrome in so many more ways than you think. Read about how to engage with them and how it will help your family.
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.
Understanding the Fragile X Learning Style for Better Results
We often remind fellow interventionists and educators time and time again about the many unique aspects of Fragile X syndrome as well as the resources available online and in print.
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.
Strategies for Day-to-Day Life
Mouse and Tracy present day-to-day strategies they've drawn from their evidenced-based practice and knowledge of the neurocognitive development of children with Fragile X syndrome.
More
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.