Late in the game AS diagnosis??

[Libbyt]

When my daughter was 3, she had genetic testing because they suspected Fragile X; that was negative and nothing else showed up. She was, at that time, diagnosed with Apraxia, a speech & motor disorder. As the years went on, we discovered that she had serious vision problems (no explanation), cognitive impairment (no explanation), severe anxiety and some accompanying psychological issues (no explanation), and then more recently the passing out issues (no solid explanation after many, MANY tests and procedures.) About a year ago, she was "accidentally" diagnosed with a rare genetic disorder because the new neurologist we went to for help with the passing out ordered all basic testing to be redone. BINGO, finally an explanation for ALL the issues that have dogged us all her life.......that we thought were simply "co-occurring" or comorbid.....they are really all part of the same thing. 15 years ago, when she was a toddler, this disorder wasn't even discovered. One of the geneticists we've worked with was telling me that a huge portion of the genetics research going on right now is trying to unravel the autism mystery. Someday we're going to learn how all those different pieces fit together.

Keep looking for other parents - they're out there - you've just been so busy supporting your daughter that you just haven't crossed paths with them yet!

 

[quasar4legs]

From someone that is an adoptee and an adoptive mother her is a big hug
I wish your family much peace and happiness.

 

[bookwormde]

OT

Sjanus,

Just wanted to welcome you, It is great to have clinicians who “get it” to give their perspective.

Feel free to come over to the community section under this section as there are lots of parents, educators and others who discuss non WDW spectrum issues there.

Again welcome.

bookwormde

 

[sjanus]

Thanks for the warm welcome!

Dr. Nandy Minshew at the University of Pittsburgh is doing a lot of research in the area of Autism--they already know that the brains are different in these individuals and that there is a genetic link but those genes have yet to be discovered. If you google her name you will find articles.

I found an interesting page on the University of Pittsburgh website about diagnosis of high functioning autism and Asperger's.

Here's the link. Check it out. It talks about how these individuals that are verbal are often diagnosed with other disorders. If the page on Diagnosis doesn't come up, click on Diagnosis.

http://www.pittautismresearch.org/

Sandy

 

[Erniandbert]

I have a degree in Early Childhood Education and I was blindsided by my DS diagnosis just before his 13th birthday. He was admitted to a hospital for suicidal thoughts because of years of bullying from other students and teachers. He loves to read Greek Mythology, and anything on American History.(his idea of a good bedtime book is Great American Doccuments like the constitution and Gettysburg address) After many psycological tests not only was he severly depressed (ya think?) they gave us the diagnosis of Aspergers. The feel the depression and anxiety is a side effect of the bullying. I am right there with ya on the feeling like I missed a big red flag somewhere but I feel so thankful and blessed tha one student cared enough to speak up for him when he felt like ending it all. I can't wait to see the smile on his face when we surprise him and my DD7 with a trip to WDW next month!

 

[tinkslite]

Ernie and Bert where are y'all staying, what are your sept dates???? pm me if u like!