Elsewhere on this site, I incorporated a booklet from the NIH on Autism that they published in 2004. I received the following comments from a site visitor that I felt warranted inclusion on this site. If you are involved with a Fragile X child, I would encourage you to read this, and I thank the site visitor who shared her own knowledge with all of us.

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Comments:

In December 2004, the National Institute of Mental Health (NIMH) published a booklet on Autism Spectrum Disorders (Pervasive Developmental Disorders) which contains one paragraph on Fragile X Syndrome, taken from Dr. Powers book: Children with Autism: A Parent's Guide, Second Edition. Bethesda, MD: Woodbine House, 2000, 28.

The paragraph reads as follows:

"Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome. "

THIS IS INCORRECT, PLEASE CORRECT

There is not a one in two chance that boys born to the same parents will have the syndrome. Typically, only one parent is the carrier. If the mother is the carrier she has a 50/50 chance of passing fragile X on to her sons OR daughters. If the father is the carrier, he will pass the premutation of the gene to all of his daughters. Fragile X affects 6 to 10% of people with ASD (most likely more but because it s not a routine test ordered by physicians many children with Fragile X are misdiagnosed).

There is nothing unknown about the genetics of Fragile X and who passes what to a child. It has absolutely nothing to do with children born to SAME parents.

According to the 1994 American College of Medical Genetics Policy, written in 1994, almost twelve years ago, all children with developmental delays, mental retardation of unknown origin or autism should be tested for Fragile X Syndrome.

Accurate and up-to-date information on Fragile X syndrome, FXTAS and POF (related to female fragile X carriers) can be found at: www.fragileX.org.