New Here....

iVillage Member
Registered: 10-03-2006
New Here....
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Sat, 03-17-2007 - 11:23am

I usually post on the ASD board but I thought I should intoduce myself here.

My DD is 2 1/2 and was diagnosed with ASD at 20 months old. Her main issues were a speech delay (only 3 words from age 1 until shortly after her 2nd birthday), infrequent eye-contact, trouble with transitions and major hyperactiviy. So many of her issues seem to be sensory. She is constantly on the go, hasn't napped on a regular basis since she was 18 months old and she is a deep pressure seeker. She's also a runner/bolter and I am extremely worried about her safety, as spring approaches.

The reason I feel it's appropriate to post here is that when we went for a second opinion appointment with a different Dev. Ped., she said that our DD seems to fit more into the category of PDD-NOS. However, we will not change her dx yet so that she can receive the proper services.

Anyway, I was wondering if any of your PDD-NOS or Asperger kids started out anything like my DD? I know that with Asperger's there is rarely a speech delay but my DD's vocabulary has exploded in the past few months. I stopped counting at 200 words. She is extremely bright and makes connections between concrete objects and concepts which blow me away at times. I credit EI (since 19 months old) with all of her progress.

I have been told she is extremely high-functioning but I don't want to have any illusions either. I KNOW she has some form of ASD. I was just curious as to the differences between PDD-NOS and Asperger's. I know that no matter what you call it, it's still Autism.

Thanks,
Dizzy

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Registered: 03-26-2003
Sat, 03-17-2007 - 1:19pm

HI Dizzy,

Yup, my dd started JUST like yours. Only she is a bit older and there was less known about ASD when she was little so she wasn't identified until 3 and didn't get a diagnosis until 4.

She didn't say anything until about 15 months and then it was "doggie". That was her only word for a very long time. By 2 she had maybe a few spontaneous words, one or 2 echolalic phrases. After 2 we noticed in her play one day that she seemed to know all her numbers and letters and had been obsessed on them for some time.

At 3 she was diagnosed with language delayes/disorder, motor delays, social delays, ADD, and dyspraxia. At 4 she was diagnosed with PDD-NOS. She was given this because she had a language delay but was becoming more related (with adults) due to special education intervention.

Since then she has recieved every ASD diagnosis. Because she is so able now but had delays then no one knows just were to stick her. She received an Aspergers dx at 7 and this is how she refers to herself. Her last triennial a neuropsych dx'ed her as high functioning autistic because of the early language delays, but she is still the same kid and much more able than her 11yo brother.

My dd is now nearly 13, she is mainstreamed/included for all classes, she needs supports for organizational skills, etc. but is doing very well for an autistic child. She has friends as school. She volunteers a full day every week at a theraputic horsebackriding program and is one of thier best volunteers. She is sweet, funny and very much a teen. (Ask the cl Debbie. She has met her, lol).

She is still ASD and always will be. It is how her brain works, but her language skills are caught up (other than pragmatic), she has some challenges with eye contact, and is the BIGGEST FLAKE known to mankind. But otherwise is very much a teen age girl who makes her mom shop at the mall for Vans sneakers (LOL! I LOVE THAT!) She is a great artist, a poet, and a wonderful daughter.

Renee

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iVillage Member
Registered: 05-16-2006
Sat, 03-17-2007 - 2:11pm

Hi Dizzy

My little darling DS is PDD. He is 3.5 yr old. He has speech issues and I think he'll be an aspie later. But what do I know. He has be receveing services for a year now. I have had great success but set backs along the autism way.
At the end of the day it's ALL on the spectrum and it's different degrees of fuctioning levels.
I think I'll have issues w/speech for along time w/ DS. He can communicate now, I didn't have that a year ago---HOORAY.

Aspies mostly are verbal but it depends on who evals your child.

I don't have bolter, he is more inclined to be my shadow. He is aware of himself and others. Along w/speech he really needs help with relating and playing with peers.

Last week at playground, it was sensory OVERLOAD with too many kiddies playing, he wanted to go for a walk to get away from it.

He is the LOVE of my life. I feel so blessed to have him and his autism is part of who he is as a person.

Your DD is so young and PDD is a transitional DX cause she doesnt' meet just a certain criteria. It's so vague that I get frustrated cause his therepists he meets for the 1st time NEVER know what to expect with a PDD dx.
There's a girl in his tumbling group who is PDD and in my opinion, is NOT nearly as focused as my son. She's a bolter too.

Hang with us for awhile.
I jump between this board and the ASD board too.

nora

iVillage Member
Registered: 06-25-2003
Sat, 03-17-2007 - 2:33pm

Hello Dizzy and welcome.


My son sounds similar to your DD in many ways. He is considered High Functioning Autistic, as he didn't acquire functional language until he was 4.5yo.


However now, at almost 9yo, he would hardly

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 07-12-2005
Sat, 03-17-2007 - 6:35pm

Hi Dizzy, welcome to the board.

My DD, Jade, was 'extremely low funtioning' until she was 4yo. Before that she had a grand total of one word: "help" (and even that came out strange). She couldn't walk, talk, never made eye contact (or even face contact) prefered corners over toys, etc.

Now she's 12yo and she's so 'high functioning' that a lot of people ask "are you SURE she's autistic?" They can still 'see' her Turettes and MMR, but she is very verbal, can carry on a decent conversation as long as it's with one other person at a time, and has a few friends. She seems like a normal younger teenager on the surface or in passing, and one only 'sees' the autism if they end up spending a lot of time with her.

I think the biggest mistake a parent can make is trying to classify their ASD child into a set catagory and expect that they'll stay there. The spectrum is a true slider, people on it go up and down and all over during different times in their lives. As my Aspie DH says "Autism is autism. Sometimes I'm just wading in the shallow end, but sometimes I gotta go float in the deep end for a while."

~Candes

APOV on Autism

iVillage Member
Registered: 03-20-2003
Sat, 03-17-2007 - 10:47pm

Welcome, Dizzy!


I see you've already got some great answers to your question.

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iVillage Member
Registered: 10-03-2006
Sat, 03-17-2007 - 11:54pm

Thanks everyone, for your replies. I recognize some of you from the ASD board.

My DD is so fun to be around. She is truely a happy spirit and I wouldn't change a thing about her. I really do believe that God gave her to me for a reason. She has made my life better in so many ways. Her Autism is a part of who she is. I love her more than anything in this entire world.

It's very difficult to not look to the future and take it one day at a time. Thanks for sharing some info about your kids. I guess since we don't know any other kids with autism right now, we live in a vacuum. I hope that will change once Gabby goes to preschool in the Fall.

It's great to talk to mothers who have BTDT.

I'll be hanging around....

Dizzy

iVillage Member
Registered: 11-28-2006
Sun, 03-18-2007 - 4:04pm

Hi Dizzy.

My 10 (gosh 11 yr old in less than two weeks) so far has traits of AS. I'm getting a second opinion here soon.

He spoke his first word on his first birthday (it was doggie too Renee lol). Then nothing, except for mama, dada, or "B" (his word for his favorite blanket he couldn't go anywhere without). I remember laughing with my neighbor about how Chris could do all sorts of animal sound affects, but he doesn't say any words.

Well he caught up after two, and his speech seemed to be fine. I don't remember if he ever echolia'd, but then again, there's alot of things he did that I never thought much of. He does now, sometimes repeats back stuff to me I just said, but mostly with tv and movie stuff.

I really wish I hadn't listened to everyone when he wasn't talking. They used to say don't worry, it just means he's concentrating on another skill is all. Or when he head banged, or toe walked, again I'd hear, oh thats just a boy thing.... or how he didn't play with any of his toys... again I thought well he's just a curious kid and wants to learn about the world.

Anyway welcome Dizzy, its nice to meet you :).

Lainie

iVillage Member
Registered: 10-03-2006
Mon, 03-19-2007 - 9:57am

Lainie,

Our kids seem to have a bit in common. My DD also started speaking at 1 yr with three words. Actually, I think we started to get about 10 out of her but then after about a month, she went back to the original three and stayed there until she was a little past 2. I also took the regression to be that she was concentrating on developing other skills. She only started crawling at 11 months and didn't walk on her own until 16 months! Still, I was told it was nothing to worry about and I wasn't too worried.

Her behavior and tantruming was my main issue. We started a Mommy and Me class when she was 17 months old and she was just uncontrolable. She couldn't sit still for a minute and would tantrum at the slightest thing. She was grabbing toys from other kids and I had to restrain her several times per session. She truely enjoyed being around the other kids but didn't seem to interact properly. In fact, all the kids around her age were "different." They listened to directions, could concentrate on an activity and were generally calmer. There was a night and day difference between them and Gabrielle. I can't tell you how many times we had to leave early. I would carry her out kicking and screaming.

At her 18 month Ped. appointment, I brought up these issues and her Ped. suggested we go for a speech evaluation. She said that the behavior problems were probably due to the fact that she couldn't communicate. I figured we had nothing to lose. There was no mention of Autism. However, I knew that we lived in an area that has the highest Autism rates in the country (I found out after we moved here, when DD was 10 months old), and that the dr's around here were on the alert for anything that even hinted of Autism. In my wildest dreams, I did not think she was Autistic at the time. It was only later, as I did my research, that I saw the signs. The dx came four months later.

Please don't beat yourself up for not seeing the signs. I didn't really see them either. Looking back, she stimmed as a baby, walked on her toes for a while and banged her head too. At the time, I really thought that Autsim wasn't the culprit. I thought that children with Autsim were quiet, hated to be touched and were in their own world all the time. This was not my DD. I just thought she was curious and fiercely independent! Now I know better and realize that I am better off for at least having an understanding of the condition, knowing it's different manifestations, regardless of my DD's issues.

Anyway, it's nice to meet you. I look forward to talking to you and hearing more about Chris.

Dizzy