When was PDD/NOS diagnosed?

iVillage Member
Registered: 03-24-2010
When was PDD/NOS diagnosed?
12
Sat, 05-29-2010 - 6:15pm

Hello-

I was just wondering when your child was diagnosed with PDD/NOS. I have a 20 month old that I think could end up being diagnosed PDD/NOS, but right now everyone says it's too early. He does point, although he has started a bit recently. But more importantly, he doesn't use language to really communicate even though he can say 25+ words. He's currently receiving 2 hours of Early On intervention each week, which includes 1/2 hour of PT and 1/2 hour of OT. He also recently started private speech therapy. He has joint attention with us, but not as strong as it should be. He's within the 'normal' range for receptive and expressive language according to his SLP, but doesn't say much at home...just words here and there.

Just trying to figure out what's going on with our little man.

Thanks!!

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iVillage Member
Registered: 09-13-2008
Sun, 06-06-2010 - 10:34pm

We noticed developmental delay and changes at 15 months of age and thus speech, OT, and PT were all started. He was diagnosed with PDD-NOS at age 3. Every child is different on the broad range of milestones so it's hard to say at such a young age. Starting and maintaining therapy is crucial though so keep at it. I would create a journal of what he can do and as he accomplishes his goals keep track of everything. It will be very useful as you move forward.

I took my son to see a developmental pediatrician who specializes in autism/ADD/ADHD, etc., when he reached 3 because he aged out of early steps at that age and needed the diagnosis to attend ESE (exceptional student education) at a local grade school. He started in a special needs pre-k at age 3 and he graduates in 3 days from that program (he was in the program for 3 years). He starts kindergarten in the fall.

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iVillage Member
Registered: 05-03-2010
Sun, 06-06-2010 - 4:51pm

Let's see, we had our son evaluated by early intervention when he was 2 1/2.

anotherseyes

iVillage Member
Registered: 03-24-2010
Tue, 06-01-2010 - 11:10pm

Thanks for your replies everyone...I truly appreciate it. I know I am new here, but this board (along with the other iVillage boards I've posted on) really do help because this is a lonely journey. So many people tell me not to worry, he'll be fine, but they don't even know him and just think I am overreacting or he's a late bloomer. (people at work, etc.)

I don't know what is going on, but I really think it's something. I really would not be surprised if we don't end up with a PDD diagnosis down the road. I don't think he'll get the autism diagnosis as I don't think he'll meet the criteria in all areas. It could just be a delay I suppose, which I of course hope, but not so sure about that one.

His receptive language has really taken off over the last few months. He now points to different pictures in books when asked. He wouldn't point at all just a few months ago. He does have some fine motor issues and the OT does think it's easier to point with his thumb which he's done for awhile, but we've been working on isolating the index finger. His expressive language also falls into the normal range at this time. However, he hasn't been using language or many gestures to communicate which is what worries me the most. He sometimes waves hi and bye, but it's very inconsistently. He has a couple of times asked for juice and just tonight I asked if he was hungry and he went to his highchair and said eat. So that's great, but it's just not enough. His joint attention can be pretty good, but at other times he seems to care less. Some days he'll rush to the door to greet me, but then we'll have a day here or there that he could care less that I am home. He also doesn't use momma or dada very often. He will call out once in a while from his bed for one of us by name. I picked him up recently after work and he gave me a big bear hug and said...Momma!, etc. but still it just doesn't seem often enough. :(
He has been home with my husband since I went back to work at 8 weeks. Part of me thinks that could have something to do with it, but then another part of me thinks I'm just trying to figure it out to hard. I don't think he had quite the interaction he would have had if he had been home with me or at daycare. Not saying I do things perfectly by any means, but I do think men and women usually relate differently to the kids.

Sometimes I think it might a motor planning issue or sensory integration, or something else. I worry about fragile x or some other disorder/syndrome. I do feel I am grasping and straws to a degree because I just want to know what is going on with him. As heartbreaking as I know it would be to get an official ASD diagnosis, part of me might feel a little relief that we know why he's having delays, etc.

I really don't think that Sean displays the other characteristics I often read with ASD. Although trust me...I know the lack of pointing to show interest and communicating his needs is HUGE. However, he is generally really easy going, has not food issues, doesn't seem to fixate on things, doesn't sleep poorly, etc. That's what makes me think he wouldn't qualify for an official diagnosis based on those four main areas.

I know we just have to keep working on him, taking him to intervention and private ST and OT, and just wait and see what happens. BUT the unknown factor is what is driving me batty.
We also were told by a pediatric neurologist (with a terrific reputation) that he was not autistic, nor would he turn autistic (after I asked him that). He told us not to worry, even about speech until 2. I don't agree with that philosophy which is why I pushed private ST for the summer.

Anyway, I know I am rambling. Thank you for listening.

Patti

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iVillage Member
Registered: 09-12-2008
Tue, 06-01-2010 - 9:18am

Gabe was dx'd with autism at 3.2 years old. We knew something was very wrong way before that. I had a feeling he was going to be a late talker around 18mo because he didn't saying anything other then da and ah and then cars soon after. At 25 mo he said cars, no, da, ma, cot (scott), turee (turtle), suhder (thunder), and a couple more. Then one day he stopped talking and regressed back to cars (his obsession), no, da, ah. But more then just a loss of words, he lost facial expression. He didn't smile at me anymore, he didn't show me things, he didn't care if I walked in a room, he never pointed at things out the car window. He was silent. I can remember riding home after picking him up at daycare and crying because no matter how many times I said his name...he wouldn't look at me. My heart was crushed. My mom was concerned, I was concerned, his dr said no worries! I worried anyway and called early intervention. He started getting 3 hr/wk of OT/ST/DT and we added 45min/wk private speech therapy. Gabe has been getting therapy since 29mo old.

When Gabe was dx'd at 3.2 years old I already knew he was autistic. But hearing the neurologist say those words and reading it on paper was harder then I thought. I was so happy that there was an answer to why Gabe was struggling, but I still had to grieve at the dx as well.

This board has been my saving grace. The gals on here have helped so much.

I hope you get some answers soon. And more importantly keep getting services for your little one...regardless of a dx...early therapy is a the key.



Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 09-22-2004
Tue, 06-01-2010 - 12:03am

My daughter got her official diagnosis at 3.5. We also have a report from when she was 3 saying no autism spectrum disorder, from a neurologist!

Her history is a bit different. She started speaking at 8 months, was speaking in full sentences by a year and continues to have all areas of speech well above her age level. However, socially and emotionally she is probably around 2 to 2.5 years old and she is 5 years old now. I figured that there was something there when she was around 1. She wasn't developing the way my friends children were. She could speak beautifully but did not say mom or dad. She never liked to be held, hated the swing, freaked out about anything that would strap her in, tantrummed like you wouldn't believe (well YOU probably would!) and was not interested in toys at all. However she met all of her milestones well ahead of time other than walking which she met on time, so I wasn't that concerned. Around the age of two we really noticed more. She was mimicking the tv and using strange statements. She has never misused a pronoun or "read" a book upside down (which is just weird to me), she still had no interest in most toys, she would only talk about one or two subjects that she was interested in and "space out" for all other conversations, she had/has an impulse to finish a task no matter what is happening around her, she will engage in repetitive behaviors to avoid a task (usually clapping her hands behind her and then in front of her over and over), and would melt down over nothing and the tantrums could last for up to 12 hours without being able to calm her down. I finally figured out that holding her on my lap rocking and counting, or playing with water/sand would calm her. She also was not good with eye contact (still isn't, but we don't force her it has to be really uncomfortable for her). She was still not good with any physical contact.

So for us it was just a lot of little things that finally added up to there being something there. Our doctor had luckily been taking notes on her behavior since she was around 12 months and when she looked at it all together she came to the conclusion that she is consistent with the PDD-NOS diagnosis with the possibility of aspergers being her dx when she is older. Luckily our ped just happened to be a developmental ped. but it still took a year and a half from me first putting 2 and 2 together, to get a dx. It is a long process and it can be very emotionally draining.

Good luck with everything. There is hope and there are people who understand what you are going through with your little one!

Kerri

iVillage Member
Registered: 03-27-2003
Mon, 05-31-2010 - 6:47pm

We got our official dx when DS was 3.5.

                                

iVillage Member
Registered: 10-03-2004
Mon, 05-31-2010 - 2:12pm

My ds was not dx'ed PDD-NOS until he was 7, but we was receiving lots of services starting at 3 years of age with an educational dx of Developmental Delay. He started getting OT, Speech, behavioral counseling and was in a therapeutic preschool right away and started to make improvements. He is now 12 and while he continues to need support, he is social and constantly learning more and more how to control his own temper. We have lots of hope for his future.

yours,

Sara

iVillage Member
Registered: 06-25-2003
Sun, 05-30-2010 - 10:41am

Ity actually started at around 19 months: he lost all his words (he hadn't had many to begin with) and he changed; became less happy and more guarded and withdrawn. He started having major meltdowns for unknown reasons, and his behaviour towards other children (people) changed.

At the time we blamed it on changes in our lives (we had moved, i was pregnant etc etc) and we were told he would catch back up. But he didn't. By 22mos we realized that he wasn't going to.

Turns out, it was a classic Autistic regression. Thanks doc.

We went through early Intervention and later the school district. they evaluated his actual functioning; IQ, language social functioning etc. and found that he had severe deficits in several areas. Therefore, without giving a diagnosis, they recommended a program of speech therapy and special education, which was expanded over time to include Occupational therapy, physical therapy and a special school (not in that order).

Like I said, he had all that in place before we got a diagnosis through private channels, so for *us* the DX made little difference to his life. I know this can be different, depending on your district.

I hope this helps.

-Paula

visit my blog at www.onesickmother.com

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-06-2009
Sun, 05-30-2010 - 10:39am
Our got a PDD dx at about 18 months.
iVillage Member
Registered: 01-25-2007
Sun, 05-30-2010 - 7:24am
Many kids don't get dx'd until school age but more and more kids are getting dx'd at a younger age. The average age used to be 7 but I don't know if that still holds true. From infancy ds was more challenging than his sister. Poor sleeping habits, picky eater, low tolerance for frustration, etc. He also had incredible focus on things he was interested in and seemed pretty bright and we put it off to it all being part of his personality. Any attempts to look deeper with his Pediatrician were poo-pooed. I was viewed as a mom who just "couldn't cope"with a difficult child. After a horrible kindie and first grade with young, inexperienced teachers, we got an older second grade teacher who took one look at him and said he should be evaluated. The preschool had also recommended an evaluation for hand flapping and stimming but the Neurologist we took him to at age four said it was a benign tic disorder and he would outgrow it. He got a Pdd-nos (with strong Asperger traits) dx at 7 and that was

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