Please help PDD-NOS dignosis

My DS is 19 months today and last Friday he was diagnosed with Pdd-nos. This is a source of controversy between DH & myself.

My DS has a speech delay but the psychologist noted that he is "too independent". He doesn't go to me or any adult to be comforted (like when he's hurt). He imitates and plays with toys appropriately. He engages with children or adult if they are playing with him but if they ignore him, he will continue to play and not be bothered by this.

He has no sensory issues, great sleeper, eater, kisses hugs, makes eye contact. Aside from the speech delay, her concern was the fact that he is not trying to get our attention all the time. He gestures and points but is inconsistent with following simple commands.

She mentioned that he is very young and there is a possibility that once he gets services, he will benefit and be social or that the speech delay is contributing to the social, she didn't know.

I asked if he will ever have a normal relationship with his older brother and I got teary-eyed and choked up. DS stopped what he was doing, ran over to me gestures and said "up" and when I picked him up he hugged me and kissed me and smiled. That's when DH lost it, he said clearly he understands I was upset, he does play with his brother and this is all due to speech. Called the psychologist a hack and left very angry. The psychologist said that his reaction was normal. She also reminded me of his age and that services besides speech will only help him.

Clearly I am upset, especially with DH reaction. Sorry this is so long. The purpose of this post was to ask if there is anywhere I can go for a second opinion? Would I be hurting my son if I got him services other than speech if everything relates to the speech?

TIA

Re: Please help PDD-NOS dignosis

DS received his PDD-NOS diagnosis at age 19 months as well. He is and always has been a very socially engaging and smiling child. Actually when I asked for the psych (he was already receiving services for a speech delay) eval my EIOD almost rolled her eyes. But something in my gut tugged at me. Afer the eval, the psychologist told me a similar thing. That DS is young. He could grow out of his diagnosis. However, he was very clear that if the diagnosis WAS correct, then he needed ABA. That it certainly wouldn't hurt him and that it would only benefit him and especially that he was so young. It is absolutely the best thing I ever did for DS. He is a completely different child...there is also the possibility of him entering district UPK with a SEIT in the spring. While DS has overcome many of the things that gave him his diagnosis, and on an average day you'd never know that he had a diagnosis, I truly believe that it is warranted.

As for a second opinion, I did the same after the psychologist did the same. The Developmental Pediatrician (who is horrible BTW) did confirm it. I am also taking him to see a different Dev. Ped. (Dr. Adesman in Commack) at the end of August. I would not discourage anyone from pursuing a second opinion. If I was giving advice, I say start your services based on the diagnosis and get an appointment for a second opinion. Most have a 6+ waiting time and many do not take insurance.

I think your DH's reaction is very common

If you have any questions, please feel free to FM

I wanted to add that there are all different functioning levels of PDD-NOS...DS is very high functioning. He now speaks (actually you cant get him to STOP talking), has great imagniative play, begs to play with other kids, etc. Half of his class has his diagnosis and are all functioning at different levels and have different areas that have given them their diagnosis. I thought it important to mention that because while your DH many not think the diagnosis fits your DS, there were other flags that the psychologist saw that prompted her to give him the diagnosis. To be honest, people who played with and interacted with DS constantly told me I was nuts and there was nothing wrong with him. But moms know when something is just not right

Message edited 5/14/2013 4:02:30 PM.

Please help PDD-NOS dignosis

I just want to ditto everything that was said by the pp. The diagnosis does not define the child. With early assistance your child can do anything and will surprise you every day. PDD-NOS is given alot to children that show some signs but not all of classic autism. DD also has that diagnosis. At first, like many parents, we were upset and wondered about her future and things she couldn't do, but then we switched and decided to focus and celebrate what she can do. Now at 6 is is super talkative, excels in all academic areas and make huge progress with her social skills and is seeking out friendships. Good luck!!

Re: Please help PDD-NOS dignosis

First off my son was dx at 26 months pdd-nos I requested an evaluation for speech never thinking that he would be considered on the spectrum. I was your DH during my eval I was hived up along with the evaluator that recommended a psychologist to come to confirm her feeling about DS. I told her she was wrong and that he just needed his speech to pick up. I asked what the red flags were and they were that he acted like he didn't care that they were there to play, not completing simple tasks as well and not so good eye contact this along with the speech delay raised flags with them. After the eval I researched what Pdd-nos was cried for four days straight trying to understand it and see if this is what my son has. He is considered high functioning and sometimes it can be hard to spot his pddnos. One therapist on her first day with DS asked me if they got the dx right because he was so playful with her and had great eye contact but she did notice some red flags further into the session. I was going to go for a 2nd opinion but then was scared if I was going to hear what I wanted but what if I was wrong (if that makes any sense) I didn't want to take a chance and told myself extra services are not going to hurt him. He did not start out with anything non existent he had everything but not at the "normal" level but after a year + of early intervention, OT and Speech he has progressed tremendously. 19 months is young but I bet if I had my son evaluated earlier I would have gotten the services a lot earlier. Go with what your gut is telling you. Your DH will understand in time. I was a mess for four days straight but after i got over all my feelings I'm now so into making sure he's getting what he needs. I take it day by day. This is a great forum for support and advice.

Re: Please help PDD-NOS dignosis

Just want to add my son also has an older brother and a year ago he couldn't tell him good morning or good bye or come play with me and now he is and tries to imitate everything he does. They are very playful together.

Re: Please help PDD-NOS dignosis

Re: Please help PDD-NOS dignosis

I sent you an FM.

Re: Please help PDD-NOS dignosis

My DS does not have PDD but he has global delays, the most significant is speech, and he is still undiagnosed but I go through the same emotions-wondering what is in store of DS, will he make friends, et. so I think what you guys are going through is totally normal.

Even if the diagnosis is inaccurate I would not fight it. Since you know your son has a speech delay he needs services and the diagnosis, accurate or not, will get him more services than he would get for just speech. Get as much as you can while you can, it can only help regardless of what the underlying issue is.