Most people have never heard of “Fragile X Syndrome.” I know I hadn’t.
What is Fragile X Syndrome?
Fragile X Syndrome is the most common inherited cause of mental impairment. This may range from mild impairments to severe mental retardation sometime referred to as intellectual disabilities. Further it is the most common cause of autism and some physical and emotional disorders.
Other disorders under the umbrella of Fragile X Syndrome are Fragile X-associated tremor/ataxia syndrome which causes tremors, balance disorders and even memory problems in older men and Fragile X-associated primary ovarian insufficiency that can cause infertility and early menopause in women.
Treatment is a bit frustrating. There are about 100 medications that are used for management of Fragile X Syndrome because the condition causes so many additional problems and each medication is effective to different degrees. It is a daunting task to use different medicines because each one technically is matter of trial error.
For that reason there are sometimes ancillary treatments that are used and one of those is occupational therapy.
What is occupational therapy?
Occupational therapy can mean different things.
For very young children it may be teaching them how to calm themselves when frustrated by their environment. For school-age children it may mean teaching them to function on a basic level. This may include taking care of feeding and clothing them. Any basic function would be included in this definition. Typically there is no self-limiting process each person is taken as far as they can go.
Occupational therapy would include teaching caregivers help younger Fragile X sufferers with basic functions.
Finally Occupational therapy would help teenage and adult sufferers with basic job skills so that they could possibly hold a job.
Another type of therapy is sensory integration training.
Sensory “skills” occur for most of us automatically. This includes the relationship between the brain and touch and movement and skin to name part of it.
An example of non-normal functioning might include preschoolers sitting in a circle for story time. One student accidentally bumps into a child with Fragile X Syndrome and that child might lash out physically. The reason is that it actually causes pain.
What are symptoms of Sensitivity Disorder?
Symptoms might include oversensitivity or under-sensitivity to touch, distractibility, social and/or emotional problems, unusually high or low activity level, physical clumsiness, apparent carelessness, lack of self-control and delays in academic achievements among other things.
The entire issue of Fragile X Syndrome is challenging. Two therapies that can help the affected person are occupational therapy and sensitivity therapy.
“Occupational Therapy and Fragile X Syndrome,” Brochure, 2008, NFXF
The National Fragile X Foundation, 1-800-688-8765