Re: Re: Worried that new Dr. will change Dx

March 31, 2011

,

How did your appointment go? Let us know what the outcome was. Hope it went well and you get the help you and your son need. ne

From: jonikkag <jonikkag@...>Subject: ( ) Re: Worried that new Dr. will change Dx Date: Tuesday, March 29, 2011, 10:38 AM

From my (albeit limited) understanding, a diagnosis of PDD-NOS is used when the child obviously falls somewhere on the spectrum, but does not meet the specific criteria for either AS or classic autism.>> Today we have a first time appt. with a Neurologist who was referred to us by a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us by a child Psych in Aug. (son was age 6) The new ped seems very good and is being thorough but I'm worried because after meeting my son he said that while my son has some aspergers traits, he doesn't feel my son has "full blown" aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1 years ago, he

would have seen all the full blown traits!!!)> > The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm being sarcastic - the appt. is longer!) the Neuro is not going to see the difficulties my son has when he is in social situations. And he's not going to know that age 3, 4 and 5 my son's problems were much more severe. I don't know what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm not sure how that will affect us and all that we've accomplished with IEP's, family etc . . . > > I feel like it took 3 years to finally get an accurate DX as we kept falling into the hands of professionals that weren't experienced with ASDs and continued to miss it within my son. The would only look for eye contact for example - yep, he has eye contact (only sometimes) or they would look for rain main type behavior etc. Now finally we know what we are dealing with, we feel the dx is correct, even

though it is now more mild. We don't want to have to go backwards with a dx. > > Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD NOS for when the Drs can't quite put a finger on it and don't know what they are dealing with yet or is it when the symptoms are so mild they bump it down to NOS dx.? > > People with PDD NOS - with children around 6 yrs of age, do they feel the dx is helpful or even more problematic when trying to explain to outsiders etc. because it's not quite as defined?> > Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure he'll address that as well. > > Any comments or help about exprience with Neuro's and or PDD-NOS would be greatly appreciated! Thank you.>

April 1, 2011

Ok, I would take a huge deep breath here. First of all, if a psych gave a diagnosis of Aspergers then that has already been diagnosed. Psychologists, developmental pediatricians and neurologists can all diagnose Autism in children. One of the things that I did when I went to the neurologist was asked around about the neurologists and then looked at the website and looked for which ones had a special interest in Autism. If he wasn't willing to look at any of your paperwork, or really assess him properly, then he was a waste of time. He sounds like a jerk to me. And some of them are. Aspergers children tend to be hyperverbal, and if he doesn't know that or the fact that the difference of definitions between classic autism and Aspergers is lack of actual speech

delays. Some Aspergers children had them but not due to Aspergers as far as I can tell. I would dump this dude like a rock and if you really feel you need a neuro consult ask around to your local Autism community and then find a good Neuro....

Good Luck,

Carolyn

From: SoCalVal <socalval@...> Sent: Fri, April 1, 2011 1:00:40 AMSubject: ( ) Re: Worried that new Dr. will change Dx

ï»¿ That is so nice of you to ask. I apologize in advance for this being so long. I need to let you know that I literally don't have anyone to talk to. This is it - this group. So when it rains, it pours! : )

Well, I'm still trying to process it in my head. I don't think it went well. I think the the Dr. was being a jerk but in such a way that was hard to tell because he did it with a smile ... do you know what I mean? He was very sarcastic at times also.

I don't want to be nieve (I tend to be by nature) and trusting just because he's a DOCTOR - Is it possible that a Neurologist doesn't actually know a lot about Aspergers? His office was full of info about Epilepsy. I believe he specializes in that.

Here's how some of our visit went:

Dr. So here you are with this kid who's wild, jumpin and running around everywhere, acting crazy and you don't know what to do about it.....

Me uhhh, no. I didn't say that.

Dr. Oh! So he doesn't ever act like that? Then what does he act like?

Me Well, there is a lot of different behaviors. It was worse when he was 3, some improvements since then... here, I brought a time line with the specific behaviors that appeared....

Dr. I won't have time to read that.....I don't want to go back that far - he's almost 7!!! Tell me what he was like last weekend.

Me Well, last weekend wasn't so much a problem ... we went to a science festival which he enjoys so he was happy....

Dr. Well maybe he behaved better because Dad was around.

Me Ha, no. You're really drawing a lot of conclusions. My husband works weekends .....

Dr. Oh! okay! So how do you handle it when your son acts up/misbehaves?

Me Well for about 2 years now we've used a reward system - positive reinforcement for good behavior...

Dr. Oh, how nice. So he controls you, you bribe him. I see how it works.....

Me sigh..... no, it means we reward him when he is behaving - not when he is not behaving.

Another time he asked about family history. Who else has aspergers in the family. I told him well we've been trying to figure that out. It's quite possible that someone does but that it was never diagnosed.

Dr. That's unlikely.

Me Really? I would think it's pretty common. Past generations weren't as likely to openly discuss things like this - not in my family anyways....

So he had me go through some family members that may have had behavior and social problems. I mentioned my cousin in France (female) who has several degrees, speaks 6 languages, never had friends, very quirky......

He interrupted me and said - no, not girls, we're only interested in boys. (Was he implying that girls don't have Asperger's?)

He asked when did he lose his speech? I said that he didn't lose his speech. So he told me well there's specific criteria that we look for. If he lost his speech - starting at 18 months of age - than we'd have reason to look into this. Was he implying that a person can only have Aspergers if they lost their speech? Is that true? I thought that that's the difference of Autism (high functioning) vs Aspergers. Aspergers for those that have speech. Please tell me if I'm wrong. I'm trying to figure this out.

He was checking my son's balance by pushing/tapping in various area of his chest and shoulders but then he made this odd commnet that really bothered me. He said with each push "So you like" push "doing this" push " to your baby sister" push "don't you?" I was like what the heck? He keeps assuming all these behaviors - mostly related to ADHD. I said earlier that my son got in a lot of trouble at school with being silly, annoying the kids, poking them in line etc. But he's not the aggressive type. I didn't appreciate him saying that to my son, who thought that was funny. He doesn't do that to his baby sister, nor do I want him to start thank you very much!

At the end he said he wants to send him for blood work to check chromosomes to rule out anything else. He admitted he doesn't think he'll find anything but it's good to do. Hmmmm.

He said he doesn't think he'll ever be able to give a diangosis because we don't know where it came from. We don't know our family history. Hmmmm. And then he sent us home with a trial pack of Intuiv for ADHD. Told us to come back in 2 months.

My world is turned upside down. I believe my son has ADHD but it's also more than that. We were given the Aspergers diagnosis by a child psych. It makes sense because he has sensory issues, anxiety, tantrums, high IQ, OCD behaviro, Heck he has all the symptoms and behaviors that everyone here posts about on a daily basis and you all have Aspergers dx for your children. Also I took in the report from the Speech Pathologist from school because that really showed all his social/pragmatic defecits. Plus let's remember my son's behavior was sooo bad at school that we finally removed him to homeschool. But now here is this Neuro who acted like it was a joke that we were even there. He didn't take me seriously.

Is it possible the Speech Pathologist got it wrong? Is it possible the child psych got it wrong? Do I go on fighting and insisting he has Asperger's because that helps explain his behavior the best way? Or do I just give up and say well he has ADHD but also some traits of Aspergers?

I just don't know what to do or how to feel anymore. Meanwhile my son has had the worst past 2 days. Sooooooooooo defiant. So emotional. Event the reward charts aren't working! If I don't know what I'm dealing with than then I don't know how to properly address it!

I'm so sorry this is so long.

Thanks for reading. Please comment.

( ) Re: Worried that new Dr. will change Dx Date: Tuesday, March 29, 2011, 10:38 AM

From my (albeit limited) understanding, a diagnosis of PDD-NOS is used when the child obviously falls somewhere on the spectrum, but does not meet the specific criteria for either AS or classic autism.>> Today we have a first time appt. with a Neurologist who was referred to us by a new pediatrician we saw 2 weeks ago. The Aspergers diagnosis was given to us by a child Psych in Aug. (son was age 6) The new ped seems very good and is being thorough but I'm worried because after meeting my son he said that while my son has some aspergers traits, he doesn't feel my son has "full blown" aspergers and so he's sending us to the neuro. (If he met my son 3,2, even 1 years ago, he would have seen all the full blown

traits!!!)> > The appt. is today, late afternoon and I'm worried that in 5 minutes (I'm being sarcastic - the appt. is longer!) the Neuro is not going to see the difficulties my son has when he is in social situations. And he's not going to know that age 3, 4 and 5 my son's problems were much more severe. I don't know what to do if he wants to change the Dx from aspergers to perhaps PDD-NOS. I'm not sure how that will affect us and all that we've accomplished with IEP's, family etc . . . > > I feel like it took 3 years to finally get an accurate DX as we kept falling into the hands of professionals that weren't experienced with ASDs and continued to miss it within my son. The would only look for eye contact for example - yep, he has eye contact (only sometimes) or they would look for rain main type behavior etc. Now finally we know what we are dealing with, we feel the dx is correct, even though it is now more mild. We don't

want to have to go backwards with a dx. > > Can anyone explain to me the difference between PDD-NOS and Apergers? Is PDD NOS for when the Drs can't quite put a finger on it and don't know what they are dealing with yet or is it when the symptoms are so mild they bump it down to NOS dx.? > > People with PDD NOS - with children around 6 yrs of age, do they feel the dx is helpful or even more problematic when trying to explain to outsiders etc. because it's not quite as defined?> > Also my son has exhibited all the symptoms of ADHD - impulsivity so I'm sure he'll address that as well. > > Any comments or help about exprience with Neuro's and or PDD-NOS would be greatly appreciated! Thank you.>

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April 1, 2011

run as fast as you can away from that doctor! find one that has knowledge of aspergers and look into a large teaching hospital like stanford, mayo, etc. one thing that i have learned in my many years of dealing with asperger kids, they usually have panic/anxiety disorder along with it, or ADHD in conjunction. I teach art therapy to autistic kids, and that has been my experience, although not always. Even if you have to drive a few hundred miles, find the right doctor. let us know what area you live in, more than likely someone from this group lives near or knows a doctor with experience. if you live in so cal, like your email address says, you should check out ucla, they might have a teaching hospital that specializes in autism. we go to stanford even though it is one hour drive away, they have

changed our lives for the better in more ways then i can say. Deborah Sycamore Art StudiosSycamore Art SchoolDeborah GustlinGraphic & Web DesignArt classes for K-12www.sycamoreartstudios.comwww.sycamoreartschool.comHome: 408-710-0892 Business: 408-710-6070From: SoCalVal <socalval@...> Sent: Thu, March 31, 2011 11:00:40 PMSubject: ( ) Re: Worried that new Dr. will change Dx

ï»¿

That is so nice of you to ask. I apologize in advance for this being so long. I need to let you know that I literally don't have anyone to talk to. This is it - this group. So when it rains, it pours! : )