got the diagnosois paperwork

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Registered: 02-12-2005
got the diagnosois paperwork
13
Fri, 01-05-2007 - 5:10pm

And ds was not diagnosed as autistic, asperger's or anything for that matter. We were told that he does have autistic tendencies, but one short of being declared asd. I had an appt with our ped and what he was told is that Joey is too smart and still learning and the hospital thought he wasn't, so therefore he isn't and if he stops learning, then we can go back after he's in grade 1 and get him retested. The dr at the hospital felt that because he doesn't talk also was a problem. I am still confused and don't know which way to go as my dr said that he is still considered asd, but they won't give him the diagnosis. *sigh*

I was told that he is just Joey and they don't know quite where to put him.

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Registered: 03-26-2003
Fri, 01-05-2007 - 5:45pm

I'm so sorry. I'm sure it's frustrating especially when you're trying to get services.


Henry's school refused testing, so now I'm contemplating letting an independent psych do the testing (and paying for it myself) to get a dx.


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Registered: 02-12-2005
Fri, 01-05-2007 - 6:00pm
we were able to get services because of his severe speech problems, but once he reaches grade 1, he won't qualify for services any more. The only school that will help him is around $2800 a year now, I can only imagine what it will be in 2 years. I am very happy that he is getting some help now, don't get me wrong, but I don't want to have to fight for yet more schooling for another child. I already fight for 2 others in the family. One has type 1 diabetes and the other has a brain injury from birth that causes him learnign problems. It's extremely frustrating.
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Registered: 06-25-2003
Fri, 01-05-2007 - 6:40pm

So let me get this straight:


Joey is ...4?

-Paula

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Registered: 03-22-2006
Fri, 01-05-2007 - 6:40pm

Oh, this is too bad. :( I was worried this would be the case for us because we've shrugged off so many times before.

Do you have enough help with funding without a diagnosis? Because if you feel your son is being left behind, I would make a huge, huge stink. You sound tired of fighting and I don't blame you one bit.

Can you get a second opinion? I think the doctors need to reassess the data at least.

iVillage Member
Registered: 03-26-2003
Fri, 01-05-2007 - 6:53pm

Unfortunately, I think part of the problem comes from being in Canada correct? They do things very different up there with regards to medical care and autism type stuff.

I wish I could be of more help. What are your options as far as getting him supports since he is not talking or getting a second oppinion?

Renee

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Registered: 03-20-2003
Fri, 01-05-2007 - 10:28pm

Man, this bites.

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Registered: 12-09-2003
Sun, 01-07-2007 - 1:54am
That seems crazy! My DS is 3, is talking conversational (now), has good comprehension, can read, and is very smart and loving---but I don't doubt he is autistic, I mean there is speech and then there is social language, which is where Gavin falls behind---he needs a lot of cues and direction. My nephew (w/ asperger's) is 10 and is also very smart, and verbal, but he needs a lot of help functioning in social situations and school---he had been kept back 2x in kindergarten (and going for a third) before my brother started testing for any developmental delays. I haven't had Gavin re-evaluated by an outside (non school) person since before he became verbal, but I am bringing him soon to a new dev. ped. I am interested to know just what the criteria for autism/asperger's is?
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Registered: 03-26-2003
Sun, 01-07-2007 - 11:07am

On the main page for this board there is a community website listed in that top paragraph next to the chat link.

The website is older, but if you go to it and look on the top left of the links there is a link for the diagnostic criteria. I think they changed ever so slightly with the DSM-IV-R a couple years back but the vast majority is still exactly the same. Though more changes need to be made IMO.

Renee

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Mon, 01-08-2007 - 11:54pm

Joey is 3.5 and he only says a few words and unless you've been around him alot, you don't understand him. They don't think he autistic, but has autistic tendencies. Not quite sure what the difference is, but that's what they said. They have no explanation as to why he isn't talking. They thought that maybe there was something wrong with his brain, but the recent MRI he had done said that his brain was normal. They sent him for and EEG and we are waiting to hear what comes from that as the tech didn't want to speculate as to what he saw, however he did say that he has a rare sleep pattern? Again, not quite sure what that means and looking on the net didn't help alot LOL He has had his heaering tested 3 times as the dr's all thought he doesn't hear. You can call him and he won't even react that you've said his name, there are times where loud noises don't bother him(he's in his own world sometimes) and then other noises, he will put his hands over his ears and screech. The good news is that his hearing is good according to the ENT we insisted he see.

I totally understand what you are saying about an autistic child learning. I have a friend who has twins who are both autistic. They are 18 yrs old and they are still learning. She wasn't impressed with the letter we received from the hospital. She gives me respite care and can see the autistic side of Joey. She said these dr's sometimes need to see the kids outside the hospital and then they may see what we do. It took her until her boys were 5 before they admitted they had autism., she said one dr even went so far as to tell her that her boys just needed more supervision and discipline!

I hope to find an answer sometime, somewhere.

Thank you for your post. Makes me feel like I'm not alone!

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Registered: 02-12-2005
Mon, 01-08-2007 - 11:58pm

Our ped thinks we should wait until closer to when Joey's funding will run out. By then Joey should be showing more signs that will be difficult to dismiss. He's already showing more that the dr has noted in his file. The dr said that if he needs to he will send Joey down to where my folks live and get the second opinion we may need.

In Canada, we have the funding for the tests, but because the province we live in is one of the ones that funds Autism, the gov't is finding more and more people are moving here and expecting the province to fund everything. They are putting more and more rules on whether or not a child is autistic.

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