Re: neuropsych nightmare

[Guest guest]

Charlotte - for what it's worth, i think you're well rid of this therapist. YOU are the parent and you need to have trust in the people you're dealing with. Hell - you can even be amicable in disagreement. But this woman sounds as if she's not prepared to take input from the family.

Actually - i would be worried about that.

All i can say is keep plugging away. We were tol that NO WAY was on the spectrum - just cos he walked across a room and sat on my knee. (did no one figure outthat in a strange environment, it was prob the safest place to be?!?!)

It took a long time and a lot of effort on our part to get the diagnosis but we did.

Hang on i there.

neuropsych nightmare

Well, she called me this afternoon and said that she thought today's appointment, which was originally for starting therapy, should now just be her and I meeting to review the report. I went there and she explained that she changed some of the requested things on the report but not most of them (she changed the "little things"). She is sticking with NLD with Asperger's traits because in her words he is "considerably more animated and socially engaged than is typically found in the Asperger's population". That's it.

(keep in mind that in other places in the report she notes that on all checklists and such he fits a clinical diagnosis of AS). She notes all the features that he does not have at the moment of NLD, which were more extensive than the ones she used to exclude the AS. I asked her how she could discount the AS on one reason alone when she gave him NLD with several peices of that puzzle missing and she said "I go by the DSM"......SO....I asked where in the DSM it was stated that AS kids did not want to be social and had no sense of humor? At this point she basically "fired" us. She stated that she did not know if she could handle being his therapist, because she felt that she might be under a microscope. She said that she has never has a parent "faxing her" or disagreeing with her on a report. She said that maybe I should take him to an Asperger's specialist. She said that having disagreed over aspects of the report she felt that our relationship may be strained or uncomfortable in the future..

So, I am back to square one with needing someone for therapy.

Maybe I am wrong, I don't know, but everything fits from infancy through present day. His cognitive profile came back strong in a totally one on one testing setting "with prompting" (essentially his test scores were acceptable) however the pragmatics, emotionality, anxiety, relating, sensory. perceptual, abstract and figurative profiles all meet with the AS diagnosis, as do the rigidity, ocd behaviors and childhood history (from my observations). Apparantly all of this adds up to NLD? because he is "animated". geez, could that be because the child has lived in a total fantasy world his ENTIRE life?? Relating to fictional characters better than real people. His obsession since age 2 has been memorizing movies! He lives in an "animated" world in his head...this leaks out in the development of his personality. Who would have thought that "this" would be the type of "damage" video and TV could have caused!!

Thanks for listening......!

-Charlotte

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[Guest guest]

Hi Charlotte,

>> She said that maybe I should take him to an Asperger's specialist.<<

I think that says it all really - she is not a specialist in ASD and doesn't

know what she is talking about. If he fits the DSM for ASD then he *is* ASD,

no two ways about it.

What kind of 'therapy' were you hoping for anyway? If she can't acknowledge

his true dx, then she'll most likely do the wrong things with him.

IME the most important thing for someone with ASD is to have the right

social environment and the right sort of help at school. Concentrate your

energies on getting that sorted for him.

in England

[Guest guest]

Charlotte,

My name is Debbie and I don't post on this group as often as I would

like... (one ASD son + one AS daughter = overwhelmed depressed mommy)

but I just had to sit down and type out how much I applaud you for

what you did with this person. I mean, I want to stand up and cheer

for you. You seem like a strong, smart mommy and you asserted your

child's right to be diagnosed correctly with such class and spot-on

perfect objections. I wish I had your " cojones " to disagree with

the reports like that, and in such an articulate manner. Your kiddo

is lucky to have you in his corner.

I've only been on this autism journey for a few months (problems

discovered last Fall with son, only recently with daughter) but one

thing that is pissing me off is a tolerance for misinformation and

misdiagnosis on the part of the professionals. If they have chosen

to make this their profession, then damn it, they should do it

right. And not get so defensive when they make a mistake. I mean,

those statistics about 85% of ASD kids being retarted are still

being disseminated out there, and that is being disproven over and

over again. Disgusting.

I think you caught this person red-handed on her screwups, and you

frankly embarrassed her. I want to thank you on behalf of all the

kiddos who will come to her in the future; I hope her experience

with you will make her a better therapist when she has time to

reflect on what an idiot she was with you and your kiddo.

Good luck in your search for a real therapist.

Debbie Greenbaum

[Guest guest]

She was "originally" going to focus on skill building in the AS area's of weakness before she decided he was to "animated" to have AS.

I still think he needs this just with someone better suited!

Thanks

-Charlotte

Re: neuropsych nightmare

Hi Charlotte,>> She said that maybe I should take him to an Asperger's specialist.<<I think that says it all really - she is not a specialist in ASD and doesn't know what she is talking about. If he fits the DSM for ASD then he *is* ASD, no two ways about it.What kind of 'therapy' were you hoping for anyway? If she can't acknowledge his true dx, then she'll most likely do the wrong things with him.IME the most important thing for someone with ASD is to have the right social environment and the right sort of help at school. Concentrate your energies on getting that sorted for him. in England

[Guest guest]

Thanks , I am actually relieved that we're leaving her the more time that goes by, just frustrated with having to locate someone qualified on our insurance.!

-Charlotte

neuropsych nightmare

Well, she called me this afternoon and said that she thought today's appointment, which was originally for starting therapy, should now just be her and I meeting to review the report. I went there and she explained that she changed some of the requested things on the report but not most of them (she changed the "little things"). She is sticking with NLD with Asperger's traits because in her words he is "considerably more animated and socially engaged than is typically found in the Asperger's population". That's it.

(keep in mind that in other places in the report she notes that on all checklists and such he fits a clinical diagnosis of AS). She notes all the features that he does not have at the moment of NLD, which were more extensive than the ones she used to exclude the AS. I asked her how she could discount the AS on one reason alone when she gave him NLD with several peices of that puzzle missing and she said "I go by the DSM"......SO....I asked where in the DSM it was stated that AS kids did not want to be social and had no sense of humor? At this point she basically "fired" us. She stated that she did not know if she could handle being his therapist, because she felt that she might be under a microscope. She said that she has never has a parent "faxing her" or disagreeing with her on a report. She said that maybe I should take him to an Asperger's specialist. She said that having disagreed over aspects of the report she felt that our relationship may be strained or uncomfortable in the future..

So, I am back to square one with needing someone for therapy.

Maybe I am wrong, I don't know, but everything fits from infancy through present day. His cognitive profile came back strong in a totally one on one testing setting "with prompting" (essentially his test scores were acceptable) however the pragmatics, emotionality, anxiety, relating, sensory. perceptual, abstract and figurative profiles all meet with the AS diagnosis, as do the rigidity, ocd behaviors and childhood history (from my observations). Apparantly all of this adds up to NLD? because he is "animated". geez, could that be because the child has lived in a total fantasy world his ENTIRE life?? Relating to fictional characters better than real people. His obsession since age 2 has been memorizing movies! He lives in an "animated" world in his head...this leaks out in the development of his personality. Who would have thought that "this" would be the type of "damage" video and TV could have caused!!

Thanks for listening......!

-Charlotte

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[Guest guest]

Debbie,

Thanks for the support, the battle is never easy, but my son went so long without the correct diagnosis that I feel as though I am in total catch up mode and need to fight like an animal to make sure I am heard.

There was a time (like when his first report was done at almost ) that I just shrugged my shoulders and took what was said at face value, I was also still in denial insisting that he would grow out of most of it.

Now that I know better and school is getting so much harder (going into 6th grade which is a change to middle school here) I need to do whatever it takes to make sure he doesn't fall through the cracks!

Thanks again, all support I can get is seriously needed!!

-Charlotte

Re: neuropsych nightmare

Charlotte,My name is Debbie and I don't post on this group as often as I would like... (one ASD son + one AS daughter = overwhelmed depressed mommy)but I just had to sit down and type out how much I applaud you for what you did with this person. I mean, I want to stand up and cheer for you. You seem like a strong, smart mommy and you asserted your child's right to be diagnosed correctly with such class and spot-on perfect objections. I wish I had your "cojones" to disagree with the reports like that, and in such an articulate manner. Your kiddo is lucky to have you in his corner.I've only been on this autism journey for a few months (problems discovered last Fall with son, only recently with daughter) but one thing that is pissing me off is a tolerance for misinformation and misdiagnosis on the part of the professionals. If they have chosen to make this their profession, then damn it, they should do it right. And not get so defensive when they make a mistake. I mean, those statistics about 85% of ASD kids being retarted are still being disseminated out there, and that is being disproven over and over again. Disgusting.I think you caught this person red-handed on her screwups, and you frankly embarrassed her. I want to thank you on behalf of all the kiddos who will come to her in the future; I hope her experience with you will make her a better therapist when she has time to reflect on what an idiot she was with you and your kiddo.Good luck in your search for a real therapist.Debbie Greenbaum

[Guest guest]

You know, I had the same fear when my son started the 7th grade, of course because they have a different teacher for each subject and a locker and all that, but he seemed to do fine. Except of course, that he had to bring every book home with him, and his bookbag weighed more than him, because he was afraid if he went to his locker he would miss the bus or be late for a class. But other than that he did pretty well. He has gotten straight A's and does well. There were a few minor issues I had to deal with but nothing major. Wishing your child the best when he starts school!!!!! designs <scottdesigns@...> wrote:

Debbie,

Thanks for the support, the battle is never easy, but my son went so long without the correct diagnosis that I feel as though I am in total catch up mode and need to fight like an animal to make sure I am heard.

There was a time (like when his first report was done at almost ) that I just shrugged my shoulders and took what was said at face value, I was also still in denial insisting that he would grow out of most of it.

Now that I know better and school is getting so much harder (going into 6th grade which is a change to middle school here) I need to do whatever it takes to make sure he doesn't fall through the cracks!

Thanks again, all support I can get is seriously needed!!

-Charlotte

Re: neuropsych nightmare

Charlotte,My name is Debbie and I don't post on this group as often as I would like... (one ASD son + one AS daughter = overwhelmed depressed mommy)but I just had to sit down and type out how much I applaud you for what you did with this person. I mean, I want to stand up and cheer for you. You seem like a strong, smart mommy and you asserted your child's right to be diagnosed correctly with such class and spot-on perfect objections. I wish I had your "cojones" to disagree with the reports like that, and in such an articulate manner. Your kiddo is lucky to have you in his corner.I've only been on this autism journey for a few months (problems discovered last Fall with son, only recently with daughter) but one thing that is pissing me off is a tolerance for misinformation and misdiagnosis on the part of the professionals. If they have chosen to make this their profession, then

damn it, they should do it right. And not get so defensive when they make a mistake. I mean, those statistics about 85% of ASD kids being retarted are still being disseminated out there, and that is being disproven over and over again. Disgusting.I think you caught this person red-handed on her screwups, and you frankly embarrassed her. I want to thank you on behalf of all the kiddos who will come to her in the future; I hope her experience with you will make her a better therapist when she has time to reflect on what an idiot she was with you and your kiddo.Good luck in your search for a real therapist.Debbie Greenbaum

[Guest guest]

~laughing~ My son needed one of those small suitcases that they allow as

carry-ons on flights, you know the ones... with long handles and wheels...

That way, he has everything he needs going from class to class with him and

he never needs to stop by his locker except to get his lunch (he has more

time then!). The school has made accommodations for his " bag " and he has

done so well with it that he is starting high school in all honors courses

and is able to skip many of the typical freshman courses due to advanced

placement. They are even writing him a note saying that he can take courses

at our local college this summer (huge step) due to his ability and now

having the organization taken care of in his bag and planner!!!

~hugs~

Rabecca

From: Weber <shell.belle@...>

Subject: Re:

You know, I had the same fear when my son started the 7th grade, of course

because they have a different teacher for each subject and a locker and all

that, but he seemed to do fine. Except of course, that he had to bring

every book home with him, and his bookbag weighed more than him, because he

was afraid if he went to his locker he would miss the bus or be late for a

class. But other than that he did pretty well. He has gotten straight A's

and does well. There were a few minor issues I had to deal with but nothing

major. Wishing your child the best when he starts school!!!!!