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 We received Odin's report on Monday and to our surprise he has PDD-NOS and not Aspergers like we had thought. She said that although he has the social imparement he did not show the other signs for aspergers. I've been on line ever since I found out it's PDD-NOS but it sounds like they give this diagnosis when they aren't really sure what the issue is. Can anyone share if their child has PDD-NOS and what it means to them? I'm kind of confused about it.

She did say he would need to be re-evaluated in 12 months because of his age that things may change as he gets older.  

by on Jun. 15, 2012 at 10:59 AM
Replies (11-20):
Siobhan69
by Siobhan on Jun. 15, 2012 at 12:14 PM

 Yes I agree. Odin is 4 and they did say re-evaluate him in 12 months as he matures. He is ok with eye contact at least with us and our family members. It's the whole social thing he doesn't get and has a hard time engaging in conversations. He becomes very anxious because of this which then leads to his aggression and melt downs. The school district is coming out to our house Aug 31st to evaluate him for school, so who knows what they will say. He will begin therapy in the next week, I think it is ABA, OT and a social skills group. So hopefully the therapies will help him navigate socially.

Quoting kajira:

i cna give you some idea sabout this.

1. Autism is not like PPDNOS - PPDNOS indicates autism-like traits, with social verbal language issues and deficits in certain areas, but not quite old enough to officially SAY he's autistic.

2. My son would have maybe been given a PPDNOS label around 2-3. He appeared outwardly very functional.

at 8 - and me at 27 - we are both smack dab in the middle of the autism scale - semi verbal, but pretty nonfunctional.

at 2-3 years old, taht would have been really, really, really hard to diagnose though since he and I were verbal and aren't anti-social in the sense that we don't ever try to interact. The key is neither he, nor I, can socially interact long term in a way that's appropriate.

It physically hurts me to make eye contact, which makes it so I can't read social situations and if people try to force me to make eye contac,t I'd meltdown or totally freak out. Even as an adult.

I force myself to make eye contact with my kids to practice for both of us, and it's very torterous for me to do it. They are worth it, but I won't do it with others. LOL

 

And, like rogue says, kids who seem slightly delayed DO eventually catch up. It's usually by 5-8 that they can be pretty sure that it's not just a delay that will be out grown.

Quoting Siobhan69:

 Why don't they just say autism instead of PDD-NOS, this is the part that confuses me. Why didn't she just give him the austim diagnosis. 

Quoting Austinsmom4544:

My son was dx'd with  PDD-NOS / ASD.  What it means to me?  He has autism plain and simple. 

 


 

kajira
by Emma on Jun. 15, 2012 at 12:19 PM

If he's getting the therapies, then the label doesn't really matter, because he still qualifies for the intervention right now. 

I would, change your use of calling him autistic though since PPDNOS is going away, and waiting to see what your doctor does. If your doctor feels he's actually autistic in a year, he will label him autistic.

If he's out grown it enough in a year to not be considered autistic, it's probably good to not have that image in mind for him in a year when/if it comes to it.

I think it's reasonable to want resources and help for a delayed child. I also think you need to give him a chance to show you which direction he's going before he gets totally pingeonholed. - which is why I can see your doctors point.

He's still getting help, but your doctor doesn't want him considered autistic unless he actually IS autistic and not just slightly delayed. many delayed kids catch up by 3rd grade. - it's why they kept saying my son would catch up - and to re-evaluate him by 8.

Quoting Siobhan69:

 Yes I agree. Odin is 4 and they did say re-evaluate him in 12 months as he matures. He is ok with eye contact at least with us and our family members. It's the whole social thing he doesn't get and has a hard time engaging in conversations. He becomes very anxious because of this which then leads to his aggression and melt downs. The school district is coming out to our house Aug 31st to evaluate him for school, so who knows what they will say. He will begin therapy in the next week, I think it is ABA, OT and a social skills group. So hopefully the therapies will help him navigate socially.

Quoting kajira:

i cna give you some idea sabout this.

1. Autism is not like PPDNOS - PPDNOS indicates autism-like traits, with social verbal language issues and deficits in certain areas, but not quite old enough to officially SAY he's autistic.

2. My son would have maybe been given a PPDNOS label around 2-3. He appeared outwardly very functional.

at 8 - and me at 27 - we are both smack dab in the middle of the autism scale - semi verbal, but pretty nonfunctional.

at 2-3 years old, taht would have been really, really, really hard to diagnose though since he and I were verbal and aren't anti-social in the sense that we don't ever try to interact. The key is neither he, nor I, can socially interact long term in a way that's appropriate.

It physically hurts me to make eye contact, which makes it so I can't read social situations and if people try to force me to make eye contac,t I'd meltdown or totally freak out. Even as an adult.

I force myself to make eye contact with my kids to practice for both of us, and it's very torterous for me to do it. They are worth it, but I won't do it with others. LOL


And, like rogue says, kids who seem slightly delayed DO eventually catch up. It's usually by 5-8 that they can be pretty sure that it's not just a delay that will be out grown.

Quoting Siobhan69:

 Why don't they just say autism instead of PDD-NOS, this is the part that confuses me. Why didn't she just give him the austim diagnosis. 

Quoting Austinsmom4544:

My son was dx'd with  PDD-NOS / ASD.  What it means to me?  He has autism plain and simple. 

 


 


Siobhan69
by Siobhan on Jun. 15, 2012 at 12:37 PM

 With Odin it's really hard to figure out what is going with him. They also indicated ADHD but at the same time said that sleep deprivation came mimic this. He hardly sleeps and has been like this since he was an infant. My brother is the same for sleep, sleeping only 3 to 4 hours a night, Odin may be the same in that area. Dr's thought my brother had ADHD but he doesn't. We give Odin melatonin but I don't really see much of a difference other than it seems to calm him down before bed time. He has gotten into the habit of going into to his own bed only to get up and come into ours but he will then get some sleep but only sleeps about 5 or 6 hours a night. The doctor said that some of his aggression could be because of his sleep. It's a little frustrating to not have solid information but I guess I have to accept what we are given and they are doing their best to figure him out. We are lucky with the services provided and how quickly everything is happening. We only began the "journey" in April and I feel we are headed on the right road to giving him the best help we can.

Quoting kajira:

If he's getting the therapies, then the label doesn't really matter, because he still qualifies for the intervention right now. 

I would, change your use of calling him autistic though since PPDNOS is going away, and waiting to see what your doctor does. If your doctor feels he's actually autistic in a year, he will label him autistic.

If he's out grown it enough in a year to not be considered autistic, it's probably good to not have that image in mind for him in a year when/if it comes to it.

I think it's reasonable to want resources and help for a delayed child. I also think you need to give him a chance to show you which direction he's going before he gets totally pingeonholed. - which is why I can see your doctors point.

He's still getting help, but your doctor doesn't want him considered autistic unless he actually IS autistic and not just slightly delayed. many delayed kids catch up by 3rd grade. - it's why they kept saying my son would catch up - and to re-evaluate him by 8.

Quoting Siobhan69:

 Yes I agree. Odin is 4 and they did say re-evaluate him in 12 months as he matures. He is ok with eye contact at least with us and our family members. It's the whole social thing he doesn't get and has a hard time engaging in conversations. He becomes very anxious because of this which then leads to his aggression and melt downs. The school district is coming out to our house Aug 31st to evaluate him for school, so who knows what they will say. He will begin therapy in the next week, I think it is ABA, OT and a social skills group. So hopefully the therapies will help him navigate socially.

Quoting kajira:

i cna give you some idea sabout this.

1. Autism is not like PPDNOS - PPDNOS indicates autism-like traits, with social verbal language issues and deficits in certain areas, but not quite old enough to officially SAY he's autistic.

2. My son would have maybe been given a PPDNOS label around 2-3. He appeared outwardly very functional.

at 8 - and me at 27 - we are both smack dab in the middle of the autism scale - semi verbal, but pretty nonfunctional.

at 2-3 years old, taht would have been really, really, really hard to diagnose though since he and I were verbal and aren't anti-social in the sense that we don't ever try to interact. The key is neither he, nor I, can socially interact long term in a way that's appropriate.

It physically hurts me to make eye contact, which makes it so I can't read social situations and if people try to force me to make eye contac,t I'd meltdown or totally freak out. Even as an adult.

I force myself to make eye contact with my kids to practice for both of us, and it's very torterous for me to do it. They are worth it, but I won't do it with others. LOL

 

And, like rogue says, kids who seem slightly delayed DO eventually catch up. It's usually by 5-8 that they can be pretty sure that it's not just a delay that will be out grown.

Quoting Siobhan69:

 Why don't they just say autism instead of PDD-NOS, this is the part that confuses me. Why didn't she just give him the austim diagnosis. 

Quoting Austinsmom4544:

My son was dx'd with  PDD-NOS / ASD.  What it means to me?  He has autism plain and simple. 

 


 


 

kajira
by Emma on Jun. 15, 2012 at 12:43 PM
1 mom liked this

You are a great mom - and it sounds like your doctors are working really hard on your behalf.

I don't know what to say much about the sleep issues, except I didn't sleep a lot as a kid and had a lot of nightmares. It took learning to sleep on a schedule, not taking naps, having a bedtime routine, and certain things rituals that made me transition from awake, to sleep to be able to do it.

And it also took my husband just *making* me go to bed when I didn't want too, or staying there next to him at 2am when I want to get up - I fell back asleep. almost every time if I just laid there long enough. The key was, he'd provide something to help give me an incentie to stay in bed. either letting me cuddle the dog. (who at the time was a 120lbs rottweiler) to pet until I fell back asleep. or he'd lay half-way on top of me and squish me for a while until my brain could go back to sleep.

My sleep cycles/patterns are still erratic, I went to bed at 3am last night after watching true blood and got up at 830am. ^.^

Quoting Siobhan69:

 With Odin it's really hard to figure out what is going with him. They also indicated ADHD but at the same time said that sleep deprivation came mimic this. He hardly sleeps and has been like this since he was an infant. My brother is the same for sleep, sleeping only 3 to 4 hours a night, Odin may be the same in that area. Dr's thought my brother had ADHD but he doesn't. We give Odin melatonin but I don't really see much of a difference other than it seems to calm him down before bed time. He has gotten into the habit of going into to his own bed only to get up and come into ours but he will then get some sleep but only sleeps about 5 or 6 hours a night. The doctor said that some of his aggression could be because of his sleep. It's a little frustrating to not have solid information but I guess I have to accept what we are given and they are doing their best to figure him out. We are lucky with the services provided and how quickly everything is happening. We only began the "journey" in April and I feel we are headed on the right road to giving him the best help we can.

Quoting kajira:

If he's getting the therapies, then the label doesn't really matter, because he still qualifies for the intervention right now. 

I would, change your use of calling him autistic though since PPDNOS is going away, and waiting to see what your doctor does. If your doctor feels he's actually autistic in a year, he will label him autistic.

If he's out grown it enough in a year to not be considered autistic, it's probably good to not have that image in mind for him in a year when/if it comes to it.

I think it's reasonable to want resources and help for a delayed child. I also think you need to give him a chance to show you which direction he's going before he gets totally pingeonholed. - which is why I can see your doctors point.

He's still getting help, but your doctor doesn't want him considered autistic unless he actually IS autistic and not just slightly delayed. many delayed kids catch up by 3rd grade. - it's why they kept saying my son would catch up - and to re-evaluate him by 8.

Quoting Siobhan69:

 Yes I agree. Odin is 4 and they did say re-evaluate him in 12 months as he matures. He is ok with eye contact at least with us and our family members. It's the whole social thing he doesn't get and has a hard time engaging in conversations. He becomes very anxious because of this which then leads to his aggression and melt downs. The school district is coming out to our house Aug 31st to evaluate him for school, so who knows what they will say. He will begin therapy in the next week, I think it is ABA, OT and a social skills group. So hopefully the therapies will help him navigate socially.

Quoting kajira:

i cna give you some idea sabout this.

1. Autism is not like PPDNOS - PPDNOS indicates autism-like traits, with social verbal language issues and deficits in certain areas, but not quite old enough to officially SAY he's autistic.

2. My son would have maybe been given a PPDNOS label around 2-3. He appeared outwardly very functional.

at 8 - and me at 27 - we are both smack dab in the middle of the autism scale - semi verbal, but pretty nonfunctional.

at 2-3 years old, taht would have been really, really, really hard to diagnose though since he and I were verbal and aren't anti-social in the sense that we don't ever try to interact. The key is neither he, nor I, can socially interact long term in a way that's appropriate.

It physically hurts me to make eye contact, which makes it so I can't read social situations and if people try to force me to make eye contac,t I'd meltdown or totally freak out. Even as an adult.

I force myself to make eye contact with my kids to practice for both of us, and it's very torterous for me to do it. They are worth it, but I won't do it with others. LOL


And, like rogue says, kids who seem slightly delayed DO eventually catch up. It's usually by 5-8 that they can be pretty sure that it's not just a delay that will be out grown.

Quoting Siobhan69:

 Why don't they just say autism instead of PDD-NOS, this is the part that confuses me. Why didn't she just give him the austim diagnosis. 

Quoting Austinsmom4544:

My son was dx'd with  PDD-NOS / ASD.  What it means to me?  He has autism plain and simple. 

 


 


 


LIMom1105
by Silver Member on Jun. 15, 2012 at 12:52 PM
1 mom liked this

My son has PDD-NOS, he was diagnosed a year ago. I do feel as if it's a "hmmm, this could be autism or it could be something else" diagnosis. While his diagnosis is not Aspergers, I tend to read books and information about Aspergers, because there is so little just about PDD-NOS, and most of the Aspergers information applies (behaviors, etc.).  My son had a speech delay, though he caught up quickly with speech therapy.  He still has pragmatic speech issues though. He's 4.5 now, and with a year of services, I have seen great progress.  Still, I can't say he's moving out of the diagnosis altogether. New problems have popped up that weren't there a year ago while some of the old problems have vanished. Hard to say, but I would guess this will be the way it is for some time.  That's us though, if they were keeping the Aspergers diagnosis, I wouldn't be surprised if he was given that in time. 

The good thing is that you will probably qualify for services, and whether your child has autism or delays, they will very likely help a lot.  Hugs to you and good luck!

Siobhan69
by Siobhan on Jun. 15, 2012 at 1:05 PM

My Dh and I have read so much about aspergers that we really felt this is what he has. PDD-NOS and  Aspergers are both are going away, so where does it leave us?? Hopefully there will be something that says if you were previously diagnosed with either of these its now just considered ASD or something like that. I just worry about not being able to receive services for him . I don't really care what the label is I just want to make sure we can provide the things he needs :-)  

Quoting LIMom1105:

My son has PPD-NOS, he was diagnosed a year ago. I do feel as if it's a "hmmm, this could be autism or it could be something else" diagnosis. While his diagnosis is not Aspergers, I tend to read books and information about Aspergers, because there is so little just about PPD-NOS, and most of the Aspergers information applies (behaviors, etc.).  My son had a speech delay, though he caught up quickly with speech therapy.  He still has pragmatic speech issues though. He's 4.5 now, and with a year of services, I have seen great progress.  Still, I can't say he's moving out of the diagnosis altogether. New problems have popped up that weren't there a year ago while some of the old problems have vanished. Hard to say, but I would guess this will be the way it is for some time.  That's us though, if they were keeping the Aspergers diagnosis, I wouldn't be surprised if he was given that in time. 

The good thing is that you will probably qualify for services, and whether your child has autism or delays, they will very likely help a lot.  Hugs to you and good luck!

 

 

Momof5Boys610
by Ann on Jun. 15, 2012 at 2:44 PM
My son was diagnosed with PDD-NOS at 21 months old, and I firmly believe he does have Autism. In my mind, there is no differentiation between the two. Autism is autism, whether it be PDD-NOS or Aspergers. It's all on the Autism spectrum. And for me to believe and say this, it is a big deal.

I had a VERY hard time accepting that my son had Autism, it was truly devastating to me. I SO badly wanted to believe that because the doctors said it was PDD-NOS, that that meant it wasn't really Autism. I tried very hard to convince myself of that, but as time goes on, I clearly see that my son IS different, and he DOES have Autism. I have a very hard time saying that "he is Autistic", even still. I say he HAS Autism, I NEVER say "He is Autistic". I do not know why I do this, I just do. It's my own little quirk.

Anyhow, this is my opinion on your question.
unusualmom
by on Jun. 15, 2012 at 3:18 PM
My oldest was diagnosed with pdd -nos. But he doesnt have autism, doesnt have aspergers...doesnt have pdd-nos. Autism was the catch word back when he was going through his diagnosis period. And to this date...no one can tell me what his diagnosis is. He doesnt have one because he doesnt fit any category out there...none. So they gave him pdd-nos so he would get the best therapies the county could offer because he was and still is extremely delayed. Even as hes grown and somewhat matured...he still doesnt fit into any category. Good luck...
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Leobaby2007
by on Jun. 16, 2012 at 2:25 AM
My son got a dx of PDD-NOS. They told me it means he meets some, but not all the criteria for a full autism dx.

Whatever!

My son has autism, plain and simple!
thatgirl70
by on Jun. 16, 2012 at 3:02 AM

Mine was diagnosed with PDD-NOS. He's high-functioning, but I knew he didn't meet the criteria for Asperger's. He's still autistic though.

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