Fragile X Syndrome

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Does anyone here know anything about Fragile X Syndrome? My son was diagnosed with classic autism a couple of months ago, and I have Asperger's. We're going in for genetic testing soon, and I think I/we might have Fragile X because I have some of the physical traits.

My concern here is not really the current situation with our autism, but rather future children. What will this mean for my husband and I if we want to have another baby? Will they tell us what the chances are of them being more severe are? What about mental retardation? What if we have to decide between most likely having another disabled child or not having any more children? How does a person even make that decision?

This is all very disheartening to me. It's the last thing I ever thought I would be thinking about. I didn't even know about autism until after my son was born.

Hi - I don't really know much about it except it is usually more prevalent in males and with greater diability for them . I googled 'fragile x syndrome' and came up with this site :
http://www.fragilex.org/fragile-x-assoc ... -syndrome/

There looks to be a lot of information and there is a special page on the differences with autism (see left side bar on the main page)
I hope this helps.

Maybe you should wait for a medical diagnosis on the FX before you start borrowing trouble.

I have both a child and a grandchild and they both have no autistic traits whatsoever.

I have a son with a dual diagnosis of fragile X and autism.

FragileX is an excellent site (credible and accurate) for fragile X, if you would like to learn more I also recommend the following sites (especially when it comes to inheritance.) This forum won't let me list the links, sorry, connect with me if you'd like them .

CDC Fragile X page -

Your Genes Your Health

Gene Tests - FMR1 - (a little more technical but research based, peer reviewed material).

A genetic test can tell you if a child has fragile X, if they have a pre-mutation (carrier, appx. 50 -200 CGG repeats) or a full-mutation (over 200 CGG repeats) but the test will not define (nor should it) how affected they may be. Boys with fragile X are typically more affected than girls (they have only one X chromosome), with a female all bets are off because they have two X chromosomes - the general rule with females is that 1/3 will have no symptoms, 1/3 will have learning disabilities and 1/3 may be as affected as their male counterparts.

Not all children are cognitively impaired (typically the term mental retardation is not used due to the slang of the term) and a test can't tell you that.

The positives about fragile X is that during the last ten years research has taken a huge step forward to create treatments specifically for fragile X, science has learned a lot about what the fragile X gene does and is responsible for since the gene was discovered in 1991. The FRAXA Research Foundation is a great resource to follow research.

Fragile X doesn't need to define your child, neither does autism, put the child first, recognize both there strengths as well as weaknesses and build upon those.

As for family planning there are options, including PGD with IVF, but any option is a personal choice and a choice that needs to be right for you and your family.

As for testing, make sure they run the correct test the FMR1 DNA test (aka Fragile X DNA test) - a chromosome or microarray analysis cannot be used to diagnose fragile X, produces too many FALSE negatives, the DNA test is 99% accurate.

On facebook there is a large active fragile X group, Fragile X, large volume of message traffic.

Another option, if you'd like less message traffic, is the FRAXA Listserv,.
Good luck and hugs, Sally

I was pondering about that, too for one of my sons. He seems to have some of the symptoms. Finally I nagged our family doctor to order the test. He doesn't have it. You really can't know until the tests are done.