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Behavior and Fragile X Syndrome

Behavior and Fragile X SyndromeJayne Dixon Weber2024-06-11T10:24:38-04:00

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.

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Treatment & Interventions

This document provides strategies for addressing aggressive behavioral outbursts in adolescents and adults with Fragile X Syndrome, including possible causes of aggression and ways to minimize and prevent aggressive behavior.

Links to Language in Fragile X Syndrome 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).

Links to Behavioral Challenges in Fragile X Syndrome treatment recommendations.

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.

Link to Sensory Processing and Integration Issues in Fragile X Syndrome PDF.

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.

Link to Hyperarousal in Fragile X Syndrome.

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.

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.

Fragile X Info Series: Your In-Person Visit to a Fragile X Clinic.

A summary guide, checklists, and resources on how to prepare a child or adult for their first visit to a clinic.

Webinars

From Our Blog

Missy Zolecki2024-12-11T12:47:57-05:00

Enjoying Your Winter Holiday Season

By Missy Zolecki|2024-12-11T12:47:57-05:00Dec 6, 2024|

Each person with Fragile X syndrome is different, so what works for one may not work for the other. We want you to enjoy the season, so we’ve gathered a list of activities, tips, and advice to set you up for success.

Jayne Dixon Weber2024-05-09T16:07:20-04:00

Tips for Flying on an Airplane

By Jayne Dixon Weber|2024-05-09T16:07:20-04:00Jun 30, 2021|

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.

Marcia Braden2023-06-14T16:15:53-04:00

When Disappearing Acts Are a Good Thing

By Marcia Braden|2023-06-14T16:15:53-04:00Apr 2, 2020|

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.

Contributor2023-06-14T16🔞53-04:00

Managing Anxiety … What Works And Why?

By Contributor|2023-06-14T16🔞53-04:00Dec 6, 2018|

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.

Tracy Murnan Stackhouse2024-06-19T10:19:38-04:00

Concept and Use of a Sensory Diet

By Tracy Murnan Stackhouse|2024-06-19T10:19:38-04:00Sep 21, 2018|

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.

Contributor2023-06-14T16:16:05-04:00

10 Rules of Time-Out

By Contributor|2023-06-14T16:16:05-04:00Sep 14, 2017|

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.

NFXF2023-06-14T16:19:05-04:00

Visiting the Dentist

By NFXF|2023-06-14T16:19:05-04:00May 10, 2017|

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.

NFXF2023-06-14T16:16:16-04:00

Verbal Perseveration! Verbal Perseveration!

By NFXF|2023-06-14T16:16:16-04:00Mar 22, 2017|

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!

Tracy Murnan Stackhouse2023-06-14T16:13:54-04:00

Video Modeling

By Tracy Murnan Stackhouse|2023-06-14T16:13:54-04:00Nov 9, 2016|

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.

NFXF2023-06-14T16:19:23-04:00

Visual Wizardry: Using Visual Supports to Change your Child’s Life

By NFXF|2023-06-14T16:19:23-04:00Aug 31, 2016|

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.

Marcia Braden2023-06-14T16:19:37-04:00

Oppositional or Merely Anxious?

By Marcia Braden|2023-06-14T16:19:37-04:00Aug 8, 2016|

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.

NFXF2023-06-14T16:14:08-04:00

Teaching Your Child to Ask for Something

By NFXF|2023-06-14T16:14:08-04:00Jul 30, 2015|

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 [...]

NFXF2023-02-16T07:36:01-05:00

Behavior and Fragile X Syndrome

By NFXF|2023-02-16T07:36:01-05:00Jun 3, 2015|

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.

Tracy Murnan Stackhouse2023-06-14T16:16:41-04:00

My Child Won’t Answer Questions!

By Tracy Murnan Stackhouse|2023-06-14T16:16:41-04:00Jul 29, 2013|

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.

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