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Confused

Posted by on Apr. 25, 2012 at 4:45 PM
  • 10 Replies

Took my daughter to a geneticist for testing for fragile x yesterday and he did no testing said there are certain things they look for in people with fragile x and she has none he also thinks I need a 2nd opinion on her autism dx because of how she presented herself and could talk and answer his questions.The psychologist that did her evaluation for the asd is a asd specialist why do I need a 2nd opinion.What do you other moms think of this.Please give me your opinions I am confused on what to do.

by on Apr. 25, 2012 at 4:45 PM
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newmommy430
by Silver Member on Apr. 25, 2012 at 5:33 PM
The geneticist does not specialize in autism. Not everyone with autism has fragile x.

Do you feel that she was diagnose correctly when she was diagnosed with autism? If there is any doubt in your mind then get the second opinion. There are so many levels to the spectrum. She may not exibit many of the classic symptoms.
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lonelygirl_72
by on Apr. 25, 2012 at 5:41 PM
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I do believe she was dx correctly I have done research on this and she fits into the asd perfectly.He only met with her for 45mins and came to this conclusion he doesn't know my daughter and what her issues are so it kinda makes me angry that after only 45 mins he feels free to give that opinion.I didn't ask for him to do that and it made me upset that I had to drive for an hour to see him and an hour home for that.sorry Im venting now but Im frustrated by it.

momtoscott
by on Apr. 25, 2012 at 5:44 PM
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 You don't need a second opinion.  If he decided not to test for fragile x, that's fine, that's his specialty, not ASD.  But the news that you should get out of your visit is that your daughter does not have fragile x, which is good. 

You have a dx by a specialist, which is what counts. 

Amhill09
by on Apr. 25, 2012 at 6:03 PM
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I wouldn't take everything this guy said to heart bc at the end of the day he is just a person. You know your child so YOU do what is best for her bc u know ur daughter best. A lot of doc's in my area are very insensitive...my son's doc talks to me about him while playing on his iPad!!! Hang in there... One day at a time
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kajira
by Emma on Apr. 25, 2012 at 6:17 PM
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then ignore him. he has no idea what he's talking about.

And, I know your frustration - this is quite common. most people don't know what a verbal autistic child looks like.

Quoting lonelygirl_72:

I do believe she was dx correctly I have done research on this and she fits into the asd perfectly.He only met with her for 45mins and came to this conclusion he doesn't know my daughter and what her issues are so it kinda makes me angry that after only 45 mins he feels free to give that opinion.I didn't ask for him to do that and it made me upset that I had to drive for an hour to see him and an hour home for that.sorry Im venting now but Im frustrated by it.


Blog writer/author : Outside the box thinking The Quirky Kitty 



lonelygirl_72
by on Apr. 25, 2012 at 6:23 PM


Quoting kajira:

then ignore him. he has no idea what he's talking about.

And, I know your frustration - this is quite common. most people don't know what a verbal autistic child looks like.

Quoting lonelygirl_72:

I do believe she was dx correctly I have done research on this and she fits into the asd perfectly.He only met with her for 45mins and came to this conclusion he doesn't know my daughter and what her issues are so it kinda makes me angry that after only 45 mins he feels free to give that opinion.I didn't ask for him to do that and it made me upset that I had to drive for an hour to see him and an hour home for that.sorry Im venting now but Im frustrated by it.


He even said he has never seen an autistic child that could speak so well.

kajira
by Emma on Apr. 25, 2012 at 6:26 PM
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my son and I can kind of talk - and we can both spew - especially if it's a topic we like and tehre's no pressure (I have made videos of me spewing, vs someone trying to get me to talk to them in a conversatino and it's a HUGE difference - and I even LIKE talking to my husband! LOL)

i've done the same thing with my son, made examples of how he talks, how I have to get him to talk, he won't talk with out prompting unless it's a huge area of interest for him and he spews at you.

because he and I both can "spew at" someone - it apparently makes us "normal" *eyeroll*  there's a huge difference between having language, being able to use, and being able to use it appropriately AND in the correct context AND knowing how to have a back and forth conversation with someone in the right way.

if he doesn't specialize in autism, ignore him.

Quoting lonelygirl_72:


Quoting kajira:

then ignore him. he has no idea what he's talking about.

And, I know your frustration - this is quite common. most people don't know what a verbal autistic child looks like.

Quoting lonelygirl_72:

I do believe she was dx correctly I have done research on this and she fits into the asd perfectly.He only met with her for 45mins and came to this conclusion he doesn't know my daughter and what her issues are so it kinda makes me angry that after only 45 mins he feels free to give that opinion.I didn't ask for him to do that and it made me upset that I had to drive for an hour to see him and an hour home for that.sorry Im venting now but Im frustrated by it.


He even said he has never seen an autistic child that could speak so well.


Blog writer/author : Outside the box thinking The Quirky Kitty 



Kitten1555
by on Apr. 25, 2012 at 8:17 PM
My son recently went to the neurologist and he wants him tested for fragile x as.well. The neurologist and his therapist feel he is probably PDDw/adhd. my son does not have physical characteristics for fragile x and my insurance denied him and the genetic therapist who works with his neurologist is supposed.to be working on getting it covered and she's never seen him.
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greenmommo
by on Apr. 25, 2012 at 8:28 PM
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I did a lot of research on fragile x including facial characteristics. On all the pics of girls, I couldn't tell and in fact the site even said girl carriers may not show any physical symptoms of Fragile x, so this confuses me as well. Maybe do a phone consult for a 2nd geneticist???

On the autism, doesn't sound to me like he knows what he's talking about. You have a diagnosis. My dd has perfect moments of clarity with adults when being asked direct questions. 45 min in that setting does not a diagnosis make.
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lonelygirl_72
by on Apr. 25, 2012 at 10:19 PM

I agree with all of you thank you all so much you always make me feel better.you rock

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