My DS was diagnosed with PDD-NOS, please help.

Is it possble they are wrong? He is only 22 months, not speaking, doesn't make great eye contact. If we start with EI services this early is it possible he can "outgrow" it, or have a normal life?

Re: My DS was diagnosed with PDD-NOS, please help.

You could be describing my son. Exactly the same circumstances. We went full force ahead. The way I look at it....EI services can't hurt him in ANY way. They can ONLY help!!! We did ABA, OT, PT and Speech.

DS was approved for a CPSE preschool once he turned 3.

We CANNOT shut him up lol!!!

I'm hoping that with all these interventions, by the time he hits Kindergarten, he won't need them anymore. And if he does, he does. He's my baby and I love him.

For me, the alternative was ignoring the issues and having them become bad habits so by the time K comes, he'd have a MUCH harder time breaking them, kwim


It's not an easy pill to swallow, but EI is amazing and you will watch you ds blossom right in front of your eyes

FM anytime

eta: my ds most definitely leads a "normal" life with successful playdates and appropriate behaviors

Message edited 7/20/2010 9:41:06 AM.

Re: My DS was diagnosed with PDD-NOS, please help.

yes and no.

The diagnosis is hard to swallow. I will tell you that!!!

Yes, some children with PDD-NOS are undiagnosed "sometime". It's mostly because they were borderline all along and displayed "signs" of PDD but were really just a bit delayed or showed signed but essentially with therapies they will catch really well and go back to the "mainstream".

EI will do wonder. Then you will see how he progresses.

It is important to have hopes but denial is never healthy.



ETA: Aside from therapies that take most of our time, we DO live a normal life. DS has friends. We have playdates. All his friends are typical children. I don't know how long it will last until they notice he is "different" but so far everybody loves our son and still willing to play with him.

Message edited 7/20/2010 12:09:33 PM.

Re: My DS was diagnosed with PDD-NOS, please help.

My cousins son was diagnosed PDD_NOS at age 3 and by the time he went to kindergarten was no longer classified and did not test on the spectrum at all.

Message edited 7/20/2010 12:52:21 PM.

Re: My DS was diagnosed with PDD-NOS, please help.

I actually have a question. Was your child diagnosed by a child psychologist who specializes in diagnosing autism? I have been told they are the only one's that should make an official diagnosis.

Re: My DS was diagnosed with PDD-NOS, please help.

My DS was diagnosed after he turned 2, and had been getting EI already. The diagnosis is often given when there are delays they can't pinpoint so the child can get services.

My DS gets speech, PT, OT and ABA and is in a half day preschool program. He's been getting speech and PT for over a year, started ABA in February. We have seen a lot of progress both in skills and his socialization. He still has a ways to go, but I know without a doubt the services are helping him.

I work fulltime and I will tell you that the scheduling of the services is a bit stressful, but he will be doing full day preschool in the fall, which I think will make the schedule much easier on everyone, since he will get most of his services at the preschool.

It is possible they are wrong, but I know for me, it's better not to focus on the diagnosis, but to just get him whatever help he needs. And if you have a therapist that you don't think is working out, don't hesitate to speak up and possibly ask for a replacement if you feel it is necessary. You are his best advocate.

Re: My DS was diagnosed with PDD-NOS, please help.

Thank you everyone for your comments. He will be starting ABA and speech in 2 weeks. I have my meeting tomorrow to find out about all his services. I am so glad to hear that EI is really goiing to be helpful for him. He is my only baby and I will do whatever it takes to help him.

Re: My DS was diagnosed with PDD-NOS, please help.

Hi Robyn,

I know it is overwhelming. And a very hard pill to swallow. Because he is so young there is a lot of uncertainty with the diagnosis. It could just be a delay or there could be more to it. At the time my son was diagnosed (he was 26 months) we were already involved with EI and saw tremendous progress so to me it didn’t matter so much if they wanted to label him red, green or blue. It didn’t change my approach to it. Which was to give him all of the therapy you possibly can, take whatever EI offers, become knowledgeable on what you should be doing at home. And continue to lead your life. It doesn’t define him. And when you see his progress you can’t imagine the amount of pride you’ll feel.

It’s all so new for you so I’d imagine you’re still very upset. At some point you need to channel the emotion into the fight. At this point on, and you said it yourself, you do anything and everything to help your baby. You’re his biggest asset. Stay involved. Stay on top of it. You’re going to be amazed at the progress he will make in the next year. And then you’ll know more. It’s all a process.

I like to think we lead a normal life. Obviously you know that he has typical friends and playdates. His life is as normal as you make it. I know his limitations. Like and dislikes. And I tailor things to him. Sometimes it’s a success. Sometimes not. There are still plenty of days where I sit and cry about it. But more days where I look at him and am so proud of his accomplishments. Especially knowing how hard he’s worked to earn each and every one of them.

FM anytime

Re: My DS was diagnosed with PDD-NOS, please help.

Hi Robyn,

AJ was diagnosed at 15 months with Autism, officially at 18 months. he will be 3 in a month.

ABA, speech, ot, pt& school 1/2 day (he started in sept 09) has done wonders.

he has been in therapy for 1 1/2 years and if i can tell you the WONDERFUL things it has done for him i could be here forever.

like some of the others have said.. sometimes they can misdiagnose or with intense therapy by the time a child reaches K they can be declassified.

its a very hard pill to swallow but the more they do now the better our kids will be in the future.

it is a huge adjustment into your life and will take a toll on you (not going to sugar coat it here) but in the end it is sooo worth it.

i never thought AJ would ever talk, he can talk in 3-5 word sentences. he counts to 60 forward and backwards, can say the alphabet forward and backwards.. OMG the list is endless... and i give credit to the hours he has spent with his ABA therapists and his OT/PT & Speech.

school has helped him socially. he has also had the same group of friends since he was 4 1/2 months old. they are all typical and accept him for who he is. as weird as it may sound, they know AJ is "off" but love him anyway.

sept 10 he starts full day school at BOCES and will no longer be in EI, and i thank his therapists everyday for all they have done.

he gets:
10x90m ABA
3x45m OT/Speech
1x45m PT
3x2.5h school

Re: My DS was diagnosed with PDD-NOS, please help.

My DS was diagnosed this past November.
No One diagnosed him earlier. They kept saying "they weren't sure".
The school psychologist gave the diagnosis of PDD-NOS.

This is what his day looks like:

8-930: ABA (in home)
10:30-12: E.I. Seperation Class
12-2: ABA (in school)
2-230: OT or Speech depending on the day (in school)

We recently had our CPSE meeting and he was approved to go in September into a 4 hour pre-k class, then ABA for 2 hours. During his class, he will be pulled out for 30 mins. a day for OT, Speech, or PT (again, depending on the day).
This should definitley help him prepare for Kindergarten. He will be at school from 9-3.

E.I. is absoutley amazing! There are many many positive stories out there!

Re: My DS was diagnosed with PDD-NOS, please help.

Message edited 7/21/2010 12:11:15 PM.

Re: My DS was diagnosed with PDD-NOS, please help.

Message edited 7/21/2010 12:06:54 PM.

Re: My DS was diagnosed with PDD-NOS, please help.

Re: My DS was diagnosed with PDD-NOS, please help.

I completely understand where you are coming from . My DS is also in that "borderline" place and recently qualified for a half-day sp ed preschool (he's 3 and a half). He's been getting EI services since he was about 2 yo. EI has helped him so much and I'm hoping the preschool will do the same. I really feel he needs something different at this point. I'd say DS's biggest issues now are his speech/language and social skills.

I wish I could tell you it's an easy road all the time, but it's not, at least for me. More than anything else in the world, I just want my DS to be okay. I want him to have friends and just have a happy life. I know that as hard as it is now, I am doing the right thing for him. So definitely take all of the help you can get. Get him involved in playdates, try some free trials of those Mommy and Me classes, anything to acclimate him to everyday life. Good luck .

Re: My DS was diagnosed with PDD-NOS, please help.

At 2.5 my son was given a very questionable pdd-nos diagnosis...he had enough criteria to classify him as mild pdd-nos but they told us at the time how borderline he was. We needed to see how his speech developed and how the social stuff evolved.

A few months ago, at 3.5 years old he was declassified. He didn't have enough criteria for a diagnosis, not even a borderline score.

It doesn't mean we are issue free. We deal with a lot of mini meltdowns (though less and less as time goes on), he still occasionally flaps his hands ..things like that.

But the point of my response is to let you know that 22 months looks VERY different than 3 years old or 4 years old etc...I literally have a different child now than I did then. I PRAYED he would just talk. And then he did. And i prayed he would be happy. And he is. We have full conversations, he can dress himself now, potty trained at 2 years 10 months..there is NOTHING he can't do and I have faith for the rest of his life that he will be happy and achieve everything he wants.

I know Johnny isn't 100% typical. I believe he has learned a lot of coping mechanisms and has taught himself to deal with things that throw him off. there is SO MUCH hope out there. Don't do what I did and get upset over the label..it will get you nowhere other than missing out on some great stuff. I wish you the best of luck with your wonderful son...you are doing everything right and he will thrive because of it. no matter what the label is now and what the future holds. FM me anytime!