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        What is Fragile X Syndrome?

Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related. They are all caused by gene changes in the same gene, called the FMR1 gene.

Fragile X Syndrome (FXS) is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities such as Mental Retardation. FXS is the most common known cause of autism or "autistic-like" behavior, as well.

Please continue reading below:

Fragile X can include:
  • characteristic physical and behavioral features
  • delays in speech and language development
  • a condition which affects balance, tremor and memory in some older male gene carriers
  • a problem with ovarian function which can lead to infertility and early menopause in some female gene carriers.

However, some gene carriers do not exhibit any of the above features.

Fragile X can be passed on in a family by individuals who exhibit no obvious signs of this genetic condition. In some families, a number of family members may appear to be affected. However, in other families a newly diagnosed individual may be the first family member to exhibit symptoms. (This is so with Lee.)

Behavior Characteristics in Children:

Children with Fragile X Syndrome often have many positive behavioral characteristics. They can be sweet and loving and extremely social. Children with Fragile X often have good senses of humor. They love to laugh, enjoy jokes and humorous situations.

Children with Fragile X also often have a variety of behavioral challenges. Behavioral challenges are one of the most numerous identifiers for persons with Fragile X Syndrome.

Approximately 85% of boys with Fragile X are described as distractible and impulsive, with symptoms of attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD). They can have very short attention spans and problems staying on task. Girls may show less hyperactivity, but still have many ADD symptoms.

Many boys have unusual, behaviors, such as hand flapping and chewing on skin, clothing, or objects. These may be connected to sensory processing problems and anxiety, such as oral motor defensiveness, sensitivity to sound or light and poor eye contact.

Axiety in both boys and girls with Fragile X manifests itself in various ways. Some persons with Fragile X become concerned about changes in routine (such as relocation) or future stressful events. Sometimes, this is referred to as "hypervigilance".

Parents often report that their children might stiffen up when angry or upset, becoming rigid or very tense. Sometimes, they tighten up their hands, only. Tantrums may also result from anxiety and a feeling of being overwhelmed. Some boys with Fragile X are so uncomfortable in crowds and new situations that they whine or misbehave, in attempts to get out of these settings.

Many of the behavior problems of both boys and girls with Fragile X Syndrome coincide with language difficulties. Poor eye contact and difficulty sustaining a conversation, very much like staying on task, can cause social weaknesses even among those who desire to be overly social. Talking to oneself may be a symptom of anxiety in this case.

Some behaviors do overlap with the diagnosis of Autism in many cases. The majority of children with Fragile X Syndrome do not have all the characteristics of Autism, but about 15% to 33% are diagnosed as Autistic. More often, children have "autistic-like" behaviors, such as poor eye contact, hand flapping, and poor social skills.

Fragile X girls with the full genetic mutation appear to have some behavioral and emotional difficulties. Shyness, anxiety, depression and difficulties with social contacts are most often mentioned.

Both males and females with Fragile X Syndrome often have behavioral issues related to sensory processing disorders. These problems have been noticed even in very young children with Fragile X, such as: an infant's hypersensitivity to light, sounds, touch, and textures. Some young children may show strong negative reactions to being held or to certain textures of clothing. Visually complex or crowded environments, unpredictable events, and maintenance of eye contact commonly cause high arousal.

Each of these areas may affect behavior. Difficulty in dealing with arousal plus hypersensitivity may cause extreme reactions to highly stimulating situations: changes in routine, demands for interaction, acting out with temper tantrums or hitting, hand flapping, rocking, or biting the skin, clothing, or other objects, may result as a way of “self-stimulation”.

Problems with eye gaze are another result of sensory overload. Trying to make direct eye contact, along with conversation, is too demanding for many persons with Fragile X Syndrome. Even with parental interactions, some children with Fragile X can not handle direct eye gaze.

Many undesirable behaviors shown by persons with Fragile X Syndrome can be controlled by a combination of medication and various behavioral/ environmental interventions.

Please Note: I am giving a simple overview of a very complicated syndrome. My purposes in discussing even these simple characteristics are to point out which ones my brother exemplifies and to give those of you who are interested in this condition a place to start.