daughter JUST dx at 13 with PDD-NOS. Any good books or websites to turn for information?

Suzanne - posted on 10/08/2011 ( 3 moms have responded )

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I have a 13 year-old daughter who has recently been dx with having pdd-nos, though some think it is borderline Asperger's. The psychologist(WEAP in WI) told because she had speech issues, it could not be Asperger's. This seems to be in conflict with what others have told me.
Maybe I need to give a brief history:
She has always had problems with her speech. She was in early childood for speech and at 2.5 knew almost 60 signs. However, it took a change in SLP's at school to discover she has Childhood Apraxia of Speech and Global Apraxia.(I had no idea the one prior to this was so lazy.)I was told her processing is slow as well. She had become very adept at hiding what she was not able to do. I am still surprised that none of her teachers brought anything up. ...fast forward to Middle school. I noticed she just wasn't "getting it" in some social situations. She just was not picking up social cues and getting lost in social situations. It took a lot for me to get the school to listen. (bringing in a representive and forcing their hand)I had to wait at least 6 months to get a neuro-psych eval as well. In the meantime the school kept pairing her up with a girl who has major anger issues and this really was to my daughter's detriment. This girl was a bully and my daughter started speaking about harming herself. She began to have complete emotinal breakdowns at school, especially when pushed a little in terms of getting homework done. Prior to 6th grade, she would just shut down when frustrated...completely. Nothing was behavioral. She has been on prozac since February and saw a therapist over the summer. She is working with a tutor and instead of shutting down when frustrated, she blows up. I wonder if she has an issue in filtering what she takes in and how to out put it... if that makes sense...like she has to find and alternative route to access the information when she just learns it. But, once she knows it, it is in there. She just isn't all that open to multiple ways of getting the same answer or let's say folding clothes...
Her tutor wanted me to get her checked for ADHD as well and she is borderline. more like just ADD...unless the subject catches her interest. He also feels I have to be more militant to expect behavior change. Her ped said that due to being on the spectrum, there are just some things that she won't get. Consistency, firmness, routine I get...Militant seems inappropirate.
I saw a psychiatrist on Wed... he really didn't hear me. and just told me to start on the low dose ritalin to see if it helps her focus. Her pediatriacian said it sounds like she has ODD as well as the PPD-NOS. He asked me to research the medicine intuniv because he feels this would be the correct choice...(personally, I am not big on meds of any kind, but I want to be able to help my daughter)
I am at a loss of where to turn for information. The school's autism specialist is convinced she has Asperger's and says that girls are typically dx much later.Do I find another psychaitrist? Psychologist? are there any good books that can be recommended?

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Cheryl - posted on 10/08/2011

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First off.......it was once believed that children with aspergers did not have speech issues but, studies today are showing that is not the case at all. I would suggest getting on facebook if you are not already and try to connect with me over there so that I can connect you with Grown woman on the spectrum who are also professionals, authors etc that can help guide you through this next 6 months. Your daughter is at a crucial age for this diagnosis as puberty is beginning to set in. Also , I would suggest you connect with http://www.autismspeaks.org/family-servi... where you can obtain a 100 day kit to help guide you through this diagnosis and everything that comes with it.

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Michaela - posted on 10/08/2011

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Hello Cheryl,
I jut read Suzanne post , I was told the same thing about my son. They diagnosed him as aspie then switchd it to PDD? about a month ago

Katherine - posted on 10/08/2011

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If you google autism support there are also all kinds of resources. Also if you friend me on FB I too have a group that would be useful to you.

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