How many doctors did it take to get a Dx

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Registered: 11-28-2006
How many doctors did it take to get a Dx
21
Wed, 02-28-2007 - 1:42pm

Just got off the phone with Doc.......

I feel kind of empty, and sad for my son. He told me over the phone about the report he is typing up for the school, but as he has "Traits and personality Oddity's", he does not get the official Dx for Aspergers.

As a mother I know he has something on the Spectrum. I feel man, did I not tell this doc enough? Was I not clear enough? I mean how can he say his body bumping, and his eye rolling thing is a personality oddity?????

The school right now is freaking on me. The teacher called me and wanted to know about this report, because they don't have it in their hot little hands. This doc had told me 3 weeks ago that he would score everything and then get it to me within two weeks and today its going on 3 weeks, so I have been hounding him by phone because I really need this report. Even if its just for the Dysgraphia, he needs help.

And what am I supposed to do now about his thought disorder????? How about the times he just obsesses over money and business and thats all he talks about with the other kids in school? Now he won't get any social skills help without that Dx.

Right now the school wants to talk to me about retaining him, and I just don't know what to do. My husband did bring up a great point on them doing some standarized testing to see where he is at. It won't matter so much of the work he hasn't finished in class as to what he knows at this point. And I have a feeling he is learning, but just not putting it down on paper as he can tell me verbally every detail on Christopher Columbus or what they have learned in Science.

Anyway, how many docs have you gone thru?

Part of this post is also cuz I gotta let it all out. I'm trying to find a therapist right now, but when I ask for someone (for me) if they have a have alot of knowlege in Autism they get confused, like I have Autism, or I'm looking for a therapist for my boys.... Plus, there doesn't seem to be any in my area, and I might have to drive an hour to an hour and a half for one.

Big Big Sigh here....

Lainie

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Registered: 03-26-2003
Wed, 02-28-2007 - 10:08pm

The RC may know who to recomend, so would your school district.

Are you anywere UC Davis? I am trying to think what else is in N. Cali. UC Davis Mind Institute is well renowned and does LOADS of research into autism. You may be able to get into one of their studies where they do an assessment as part of the study. If not they should take most insurances there.

Good luck,

Renee

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Registered: 11-28-2006
Wed, 02-28-2007 - 10:42pm

Great ideas Renee! I will check them all, but the mind institute I wouldn't mind taking the boys too. We are about 4 to 5 hours away, but thats no biggie to me, if it means I am more confident with there knowlege on autism. They also do research on tourettes, which would be helpful to nicholas.

Thanks hon!

Lainie

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Registered: 09-09-2005
Wed, 02-28-2007 - 11:05pm

Well, you are sooo not alone in this.

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Registered: 11-28-2006
Wed, 02-28-2007 - 11:33pm

if they aren't hand flapping and echoing like a mad man they won't say ASD. Keep looking, trust your instincts!!!...

Thats funny you say that, as he doesn't hand flap and only echo's sometimes that I think that was part of the reason he didn't get the dx.

I wondered why he gave him the Gilliams Autism test, and not the Aspergers one. I was pretty confused over that one.

BTW, is echoing the same as quoting tv shows, cartoons and comercials, or just copying back what you say? If it's the first one, then I think I answered that one wrong. Because he quotes shows constantly. So does Nicholas.

Lainie

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Registered: 09-09-2005
Wed, 02-28-2007 - 11:37pm

Oh yes, all of Liam's echoing comes from movie lines, tv shows and commercials!


Dee

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Registered: 11-28-2006
Wed, 02-28-2007 - 11:44pm
Dambit, I didn't know :(
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Registered: 03-26-2003
Wed, 02-28-2007 - 11:46pm

Dave is still so like this. I think the only reason he has done so well is that we had practice dealing with the beuracracy already x2. Plus we had all the tools at home.

HOwever, issues are rearing their ugly heads again. BP was hinted at again today when I was discussing him with the family therapist (who is a fab diagnostician). Also traits of AS. Though still we don't want to go to the full dx place. However, if he doesn't pull himself out of this cycle soon we may have too. UGH. Not another one.

But anyway, he is one of those spectrum mix kids who I don't know exactly where he would be placed and if he needs a dx. OK, denial there. I can say that someday he will definitely need a dx, it is just that we can cover his needs with what we have thus far so I refuse to go that route just yet.

Renee

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Registered: 03-26-2003
Wed, 02-28-2007 - 11:55pm

With the TV shows and such alot does depend on how it is used. Some kids will just repeat tv lines because they are funny. My kids do that too.

The difference with ASD kids is quality and quantity of this.

Quality - For instance, many will use it in place of regular conversation. They may not have great communication skills and they will use chunks of language they know previously to fill in the gaps or during times of stress. Often this is called delayed echolalia. For instance, once at a doc appointment Mike wanted the doc to stop talking to him. He pointed a pen at her and pretended to push a button on it and said "This remote doesn't work. I can't get her to shut off". I have a million examples of that kind of thing with him.

Kids who are younger or have more langauge delays will do this more often or will repeat what the person said back to them rather than answer (imediate echolalia). So if you say "Hi Max" instead of replying the child would say "Hi Max". Both my kids did do this when smaller to at least some degree but not anymore. Then it is a lack of understanding language thing. They also used delayed echolalia a lot for conversatons then but not only Mike does and then typically only in stress or when completely overstimmed and unless you know him well you may not pick up on it.

Quantity - This applies to the kids who do it because it is funny more and more of our kids. They don't just repeat it once. They often do it OVER AND OVER AND OVER. This is a big one for when Mike is overstimulated. He may say a line, a sound, a word, over and over loudly as a stim.

Also, Cait will do this to a lesser extent and then it just is a lack of social knowledge. They will repeat a line thinking it is funny but don't know when to stop. We have had to have a rule in our house that 1 line can not be said more than 2-3 times in a row, period.

Renee

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Registered: 11-28-2006
Thu, 03-01-2007 - 12:18am

Well Chris would do the repeating what I said thing often. He did have language delay when he was little, but now he's 10 and will still do it occasionally.

I would say "Chris, this makes me feel angry" and he would echo back "makes you feel angry" Or when I was telling him about the doctor before he started testing I said "He's a very nice man" and he said "very nice man". Things like that.

But then he has always quoted "sayings from shows" like the life and times of zack and cody, Proud family, spongebob, etc ALOT. ONe day driving to the doc's office he was non stop, quoting, singing the jingle from mcdonalds over and over... you know the badabada, I'm lovin it! Saying over and over again "giddidy giddidy go".

He quoted all day long. He normally does it often, but that day he was non-stop. So does Nicholas. I read about it being echolia, but I never knew that before. I just thought it was copying what was said....

Lainie

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Registered: 03-26-2003
Thu, 03-01-2007 - 12:37am

Well and in the situation you explain it sounds like he was using it as a coping mechanism. Definitely more ASD then than a typical kid repeating a funny line from spongebob.

By the way that McD's line. Mike has done that too. I can hear it over and over in my head. It is worse when he is stressed or overstimulated. But if we are in the car on the way to something like a doctor, oh yeah, that would be high time for that to come out.

But there is a difference. For instance, Dave knows a TON of advertisement lines. DH calls him a walking AD. You say "Hey Dave 'Subway!'" he will respond "Eat Fresh!". Sometimes he does it because he sees a sign or is reminded for some reason. But for him it is just his memory and interest (food. The kid is so skinny but the way he eats he should weight 100lbs). But is it qualatatively different than the way Mike does it.

However, he will copy Mike as well. But he is a little brother.

Renee

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