The Therapeutic Approach To Fragile X Syndrome
by Lois Hickman, MS, OTR and Belle Curve Records (303-442-1676)

We hope that it will provide insight and education into your involvement with your children/clients as well as into your buying decisions.

What is Fragile X Syndrome?

Fragile X Syndrome is an inherited disorder that occurs in one in 1,000 births. It has a characteristic fragile site on the X chromosome, and so is more common with boys than with girls. It is diagnosed through a very accurate DNA blood test which can identify carriers and can be done prenatally. Just as in the total human family there are variations, so there are variations among persons with Fragile X.

What are Common Characteristic of Fragile X?

Common characteristics which my vary in severity include hyperextensible joints, high narrow palate, macroorchidism, large ears, developmental delays, dyspraxia, autistic-like behaviors, learning disabilities, behavioral challenges, perseverative speech patterns, repetitive movements and hyperactivity. There is often difficulty in adjusting to new situations or changes in routine. Sensory processing underlies many of these issues. Girls tend to be more shy and withdrawn than boys, although the behavioral and learning effects are rarely as severe with girls. Persons with Fragile X often feel overwhelmed by environmental sounds, sights, movements, touch, smells, textures, and tastes. Too much stress and overstimulation can result in stereotypical behavior, such as hand flapping or biting, avoidance of eye contact, withdrawal or aggression. Yet this environmental sensitivity has its positive side, often with an acute awareness of others and an ability to sense true emotion and true caring. Persons with fragile X often respond best to those who genuinely accept and respect them. Many have a love of music and can develop a skill in performing. A fascination with dialectical speech patterns results in some very entertaining abilities to imitate a variety of languages and accents!

What Treatments are Available?

It is certain that through studying Fragile X, we have learned a great deal about the effect of the environment on our well-being and on our behavior, as well as gaining valuable knowledge about this abnormality. Individuals with fragile X have a much greater sensitivity to environmental stress and are among those referred to as "the canaries in the mind shaft". Although there is no cure, there are effective interventions. A team approach combining therapies is important to providing the best intervention. A therapy program needs to focus on the person's strengths and interests. Basic elements include calming or focusing activities, vigorous physical activity incooperation with proprioceptive and vestibular input. A predictable daily routine and sensory integration treatment are also necesary elements. Music can also be an important therapeutic tool. Without paying attention to sensory issues, addressing the more cognitive, social and language ones can be more difficult.

Some Product Ideas?

Your Abilitations catalog is filled with products that would benefit individuals with Fragile X. If you need specific suggestions, please call us at 1-800-850-8602, ext. 7207 or you may want to speak with a local therapist in your area.

Need More Information?

National Fragile X Foundation, 1441 York St., Suite 303, Denver, CO 80206-2127 ¥ 800-688-8765

FRAXA Research Foundation, Inc., PO Box 935, West Newbury, MA 0985 ¥ 508-462-9900

NICHCY (Nat. Information Center for Children & Youth with Disabilities), PO Box 492, Washington, DC 20013 ¥ 800-695-0285

Back to Articles of Interest