Anyone have a child with AS and a physical anomaly?

February 3, 2011

Hi all,

I have posted here for a while, but my son was officially dx'd with AS just this

week. He is only 3 1/2, so we are fortunate to have an early dx, although to us

it felt like a long wait to get evaluated. His previous dx was SPD. My son was

also born with a rare condition called symbrachydactyly, which basically means

that one of his hands never completely formed before birth. It has a small palm

and five tiny nubs where the fingers would have grown. The other hand is

typical.

I am wondering if anyone else has a child with both an ASD and a congenital

anomaly? I am currently reading a book about AS, and it said that any child with

both AS and a physical difference should have genetic testing, which was

something that had never occurred to me. I think the book was primarily

referring to Fragile X, but if I understand correctly a low IQ is one of the

symptoms of that and my son is in the gifted range cognitively. When he was

born, the doctors said that the hand condition was completely random and not

genetic...but then again they said the hand condition was caused by amniotic

band syndrome, which I later learned was incorrect.

Have any of your children had genetic testing and have you found any value in

it?

Thanks,

Bridget

February 4, 2011

Definately a genetic test helped diagnosis a syndrome we didn't know she had.

Many kids with a genetic issue may not have AS exactly but

giving it that name is close enough to get treatment needed.

Pam

>

> Hi all,

>

> I have posted here for a while, but my son was officially dx'd with AS just

this week. He is only 3 1/2, so we are fortunate to have an early dx, although

to us it felt like a long wait to get evaluated. His previous dx was SPD. My son

was also born with a rare condition called symbrachydactyly, which basically

means that one of his hands never completely formed before birth. It has a small

palm and five tiny nubs where the fingers would have grown. The other hand is

typical.

>

> I am wondering if anyone else has a child with both an ASD and a congenital

anomaly? I am currently reading a book about AS, and it said that any child with

both AS and a physical difference should have genetic testing, which was

something that had never occurred to me. I think the book was primarily

referring to Fragile X, but if I understand correctly a low IQ is one of the

symptoms of that and my son is in the gifted range cognitively. When he was

born, the doctors said that the hand condition was completely random and not

genetic...but then again they said the hand condition was caused by amniotic

band syndrome, which I later learned was incorrect.

>

> Have any of your children had genetic testing and have you found any value in

it?

>

> Thanks,

>

> Bridget

>

February 4, 2011

We did some genetic testing for Tommy when he was about 4 years old after the

removal of a congential brain tumor. We weren't aware of his Asperger's traits

at the time and the testing was to rule out conditions associated with the type

of brain tumor he had. All the tests, thankfully, came back negative and we were

glad to have done the testing.

Good luck with your decision.

Carolyn in Maine