Girls with PDD-NOS | Autism PDD

Well, my DD is now 3 and 1/2. She seemed like she was progressing normally, even above average for her age. I intentionally waited until she was about 19 months or so before getting the 12 month shots for fear of autism onset. My middle child has HFA. Anyhoo, we get the shots and a few days later, her speech that she had started developing kinda came to a halt. Her eye contact dwindled and even relatives noticed she was acting "peculiar". She started in with minor obsessions such as her dolls and being a princess. Well, I had EI come by and she was just about 6 months delayed, enough to get her services. She progressed quite a bit, but the the EI where I live underwent a major change in employment and so her regular therapist was gone and she saw whoever they sent, 4 different people, some of which did NOT have a clue. She could say her ABC's and count so how could she be delayed?? LOL So last year the time had come for EI to refer her over to the school district for PPCD (Preschool for ages 3 and 4) Instead of a smooth transaction, we got bump after bump and EI LIED and said she was not autistic, even though the ST and the Neuro BOTH DX'ed her with mild PDD! Even at this moment, we are still trying to get her into PPCD. We have had 2 ARD's with me nearly opening up a can o' whoop ace on them. So, here I am waiting for the next ARD. But, I recently threatened them with legal action and they are suddenly being very nice....we'll see how long it lasts! LOL So, even though she is mild comparitively speaking, she has been the toughest to get programs for. She has come so far though. Her eye contact is much better and she can ask and answer lots of questions. But if you spend time with her, then you can see her differences compared to other girls her age.

Rachelle

Very interesting stories, I loved reading them and re-reading them - they have such similiar tones to what happens with me everyday as well. Amazing!

I like hearing about everyone's younger children around 3-4 because it makes me think back to when Jara was that age. This is when we had absolutely no clue she was different. Well, I _knew_ something was different, but could never put my finger on it and couldn't really verbalize it to an extent where she would've received this specific diagnosis.

I just remember one day in Target, there was a little girl I passed in a cart - she was probably only a year old but the look in her eyes was completely different than the look I was used to seeing in my own daughter's eyes. I remember telling my spouse that it was almost if I could see all the little girls connections connecting right and her wheels were spinning at all the same rate. When I look into my daughters eyes it's disconnected and some wheels spin faster than others. It was just an epiphany to me that something was definitely wrong.

When my daughet started pre-school her teachers told us something was very different about her too. They said she was very polite and absolutely delightful but couldn't understand a word the teachers were saying. In order to comprehend what was going on around her, Jara had to watch the other kids first and then imitate them - but if any language was spoken w/out visual cues, forget it, it wasn't going to happen. We took her immediately to a speech pathologist who diagnosed her with auditory processing disorder and told us she overcompensates by being a completely visual learner and is also a little delayed. Ok, we bought it.

It wasn't until she was 8 years old and we're having to re-train her in some bathroom issues, stop her from making high pitched squeaks when she's excited, giving her social scripts to interact with adults and other children and helping her write sentences that make sense did it finally hit me...that yes, PDD-NOS is a very appropriate diagnosis for her.

Don't get me wrong, my daughter is truly our gem and I love her, love her, love her! - I really think God said to me, "here, I'm going to give you a child that has all matters of the heart worked out - the only catch is that she's going to have some technical difficulties." Whereas other kids, parents don't worry about the technical difficulties but they have to constantly work on character and values. It's an even trade it seems.

It's just sad on the days when she says to me...like today, "mom, why don't I have an imagination? Emma (her friend) thinks of all our plays and knows how to play with Polly's but I don't." I had to tell her that anyone can have an imagination - you just have to make yourself think of crazy things like living on Mars. Which she promptly said- as only the literal child can do - "mom, people can't breathe on Mars."

So I laughed.

Melanie

Does anyone have problems with children not knowing how to interact in social situations yet? I guess when kids are 3-4 and girls especially, their little giggles and tickles instead of exchanging pleasantries is still cute. I think that's another reason why girls get looked over possibly too. Jara - who is very small for her age - still did that at 8 but looked like she was 6 and I missed it...I completely missed it - Now Jara is 10 and this is the first year she's been able to have the confidence in ordering her own food off a menu. We practiced!

I'm so thankful for people who really know what they are doing and helping us.

I'm rambling. I love everyone's stories, feel free to just post cute stories about your pdd-nos girls - it really makes me feel like what Jara has is real - it's still not something I've done and that really, there are other people out there in my shoes or at least walking the same path.

thanks again everyone. :)My little darling was diagnosed with Autism at 2. I caught it early because she has an older brother with Autism (he is more severe). She doesn't meet many of the criteria anymore because of EI but still finds it difficult to play with others in the playground. She doesn't get birthday invites from school but has had a couple from friends we have known from before she was diagnosed.

My friends nt girls seem to have party invites every few weeks but at least I don't have to buy too many presents.

Sometimes our blessings are so mixed!

My daughter is so delightful and every adult in contact with her just loves her to bits but the other girls at school can take her or leave her, mostly leave her.

She would prefer to play with boy toys than girl ones any day,(she has a 10yo nt brother as well). She won't let me kiss her but loves hugs. And I don't kiss sloppy LOL.

Sometimes it's hard to believe that she was the little girl in playgroup who just wanted to spend the whole time on the swing and would tantrum if I took her off. She now blows my friends away who have seen the changes over the last 4 years. She even has friends from outside school who love her company. Now if I could just fix the school issues... life would be perfect.
Hi Melanie, I also have a daughter with PDDNOS she is only 3 though! Luckly we had early intervention to help us get the dianosis we needed! Our Drs also overlooked it so we took her to a Autism clinic that was free put on by the State (ohio) and the Nuro. Dianosed her with autism there and then we went for more test to get the severity of the autism! She has MILD PDDNOS! If it wasnt for the fact EI was there we would have not known! It was always a wonder but never an extreme thought! Especially because there is no autism in either of our family history

I know the ratio is extremely low for girls with this disorder - however, if there is any mother with a girl with mild PDD-NOS, I would love to hear about it. I have a 10 year old daughter who was diagnosed about 2 years ago.

The resources are extremely limited for girls this age or just girls in general! They have many different characteristics vs. boys and I was in denial for a long time because of this.

I'm guessing it's because most girls are just diagnosed with communication disorders and the social communication aspect gets ignored because it's not so obvious. It's definitely there, you just have to look for different things. For instance, my daughter is very social - she just does something I call "parallel conversations" so, from a distance, sure it looks like she's social...get a little closer and you realize she's talking on her agenda only.

She's been in speech therapy since she's been 3 yrs. old, I've had her speech teachers in school accuse us of not exposing Jara to many things hence her limited abilities, she's been misdiagnosed with auditory processing disorder, the list goes on.

Just anyone that can relate would be a breath of fresh air for me.

Thanks,

Melanie

The first thing I noticed was she woudlnt look at me while i fed her, she didnt like to be held, she also had poor eyecontact and you had to literally get in her face. She was delayed in Gross motor so it took a long time to walk and when she finally did she spun spun spun..

So much has changed. Keep the faith.

But you know honestly if she had been my first child I might have listened to all the people who said she is just behind. But being the third well I knew this wasnt the same.

hugs

Katie was diagnosed at age 38 months after spending 9 months on a waiting list. I guess things got bad at 18months. It was like I gave birth to a tornado. She was destroying the house by 18 months and I couldn't keep a babysitter (had to quit work); however, she 'passed' all her well baby checks. At 2 1/2 I thought she was deaf (she had one of her multitude of ear infections). I got a hearing test (normal) and then had the Early Intervention Program check her out. She tantrummed, she carried toys around between the fingers of her right hand (all day long), she was basically non verbal and she didn't play normally with toys. I was oblivious to it all (because all kids develop at their own rate). Early intervention speech and O.T. didn't help her. She didn't get "it" until we started an ABA therapy program and that really helped her learn. I only wish that I could have gotten her more therapy when she was younger. She is doing o.k., but no where near being fully mainstreamed without an aide... Melanie..I think that some of our girls are more severely affected than your daughter and that is the only reason they got earlier treatment. My daughter passed all her well baby checkups and I knew the nurse practitioner and when I mentioned that I thought my daughter was autistic she said that "she couldn't be" well guess what, she is. I can keep on wishing that we had started things earlier, but won't help anything now..got to live in the present

Aloha, Renee

Oh my God Melanie...I hear those exact same things "don't worry she'll catch up" urg!

I noticed early early. I didn't want to believe it. We all thought she couldn't hear. Then after she passed two hearing test we knew she just wasn't hearing because she was deep in her own world.

SHe played for hours w/the same rattle, or toy. She wasn't motivated like most babies are. She didn't look at people and didn't like to be held by anyone else but me. She rubbed me and my husbands face from about 4 mos. old and still has a problem w/rubbing things (face, fingernails) oh, its annoying.

She was about 8 mos old when I found her lining things up. Then as the months went on she was lining up food, toys, books, ect. It just kept getting worse. Mostly she just wasnt' talking well.

Then at 2 when her brother was born my eyes were opened all the way. I knew she wasn't getting better and it wasn't until she turned 3 before I started getting the doctors involved and had her evaluated. She had just turned 3 and the thing she said all day, and I mean all day was "sun up? sun up?" and It wouldn't stop until I said "yes the sun is up" then a pause and a little latter "sun up? sun up?"

All my friends children were having conversations w/their parents and I didn't have that w/her and she was older than their children.

All my freinds younger kids were starting to potty train. They expressed thoughts to others and walked and ran and jumped and skipped and climbed stairs and Anna was struggling to keep up. She couldn't jump a year ago, she still can't skip or hop in one place. She struggles w/gross motor.

Now she is turning 4 and her conversations are very abstract. Words come and go out of no where for no apparent reason. SOmetimes I get a perfect sentence and I think she is fine maybe she will catch up...then she goes back to the odd things she does and I think, no there is a problem.

I am on that same rollercoaster and it sucks, no doubt. Noone else gets it unless they are on the same ride. I don't remember buying a ticket for this ride. I don't think I am tall enough for it. Matter of fact, who do I talk to about a refund?

My daughter will be three in Dec. We used to describe her as Emily and two on top of that. Everyone had their ideas how to deal with Emily (including the "that kid just needs a spanking that complete strangers offer in the store), but nothing worked. She tantrumed constantly, doesn't like people, (so shopping was a horrible experience every time) and uses the same words/phrases over and over. I just thought I wasn't a good mom. I wasn't able to offer her the time I gave to my older child. It wasn't until I decided I needed a job for sanity and put her in a private daycare with a woman who has raised six kids and run a daycare for many years that I realized it wasn't just me. She called me after 7 days to say she wasn't sure she could handle my child. That was 2 months ago. We started with project teach, a program for atypical kids under three. We have an appointment in Anchorage next week where it is expected that she will get a PDD-NOS diagnosis. She has many food allergies and we removed milk in all of it's forms about 9 weeks ago. What a difference! She has gained alot of language (still echolaic) and tantrums are down to approx. once a day. After changing her diet I read about the CF/GF diet and we hope to be GF by end of month. My challenge with this diet is Emily's allergy to Soy. Most of these products seem to contain soy. Are there any resources out there for us?I understand the rollercoaster ride and thinking I'm overreacting she's fine then moments when she's definitly got a problem. We need language therapy, but it isn't available. We need OT, but it isn't available. We need nutrition help... not available. There are waiting lists everywhere and I often wonder if we should move as to not miss out on "the superman years" I know this time is crutial.

I have an almost 4 yr old gir dx PDD-NOS a year ago. She is starting to have more melt downs then ever before.

SHe also was born w/out a working thyroid. She has been on synthroid since birth. I don't know how common it is for girls with this type of problem but I am glad my girl has such a loving sweet heart. She is very emotional and just looking at her wrong can put her into a long drama of tears and whines.

I have an almost 5 year old girl diagnosed with autism. She is quite social, but really lags verbally(COMMUNICATION). She is still stuck on 4 word sentences and will usually use one to two words instead. HOWEVER, she is female and can pretty much sum up any situation in 1 or 2 words

Aloha, Renee

Thank you all for responding!!!

Just curious as to WHAT was the tip off for you all to even suspect something was different about your child? Especially for such young girls???

I'm curious because I was in denial for so long - and still am in disbelief at some points I realize - I think it's because of the mildness of my daughter's that I'm always thinking..."are they sure?" But then something happens that is 100% not typical for her age and I'm convinced for a few more moments. It's a rollercoaster.

When my daugher was 3 -5 everyone was still telling us she was "delayed" - don't worry, she'll catch up - that whole song and dance. Finally when she was around 8 someone finally said that if she hasn't "caught up" by now, she never will on her own. I guess that's true, you can only be delayed for so long...

Anyway, if you all wouldn't mind sharing what was the giant tip off, that would be great.

Also if you've noticed any issues regarding personal care. That seems to be the constant reminder she's not typical. She could care less. Beautiful girl - but just doesn't care.

Thank you again - it really meant a lot to hear all of your responses.