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Is PDD-NOS considered Autism?
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I am so confused and not sure what to think. My son is 11 and I was told by his school that, after extensive evaluations, they consider him to have this disorder.
He has already been diagnosed with Tourettes and Pandas, which can also be the cause of his tics. I never really thought he had Tourettes, especially because the tics are not consistent with this disorder. I know I am not a doctor, but I still am not sure that is a correct diagnosis. The Pandas was diagnosed 2 years ago because of a start of OCD behavior and when he had his bloodwork done, his strep titers were through the roof. He is being treated right now with just antibiotics, but was treated previously with a steroid burst. Caretakers and teachers have been puzzled by him since I can remember. They would say, "we can't quite figure him out", so he has been going back and forth with different diagnosis. He does have some odd behaviors and does have some problems socially, but not in an extreme way. I guess he has certain things going on, but none of them are severe enough to be certain of what his diagnosis should be. I know that these things cannot be diagnosed with blood work, etc. which is why I think it is so difficult. They are done by observation, etc. I know that his teacher this year, just does not "get" him or his personality so I feel like her evaluations may not be accurate. He just had his physical and his pediatrician told me to go back to the neurologist and see if there is any more insight he can give me. At this point, I feel like my head is spinning and we are being pulled in so many different directions. His school is worried about his transition to middle school next year as am I, but then again, I am hoping to be pleasantly surprised. He is emotional, but he is a great kid - very sweet and very smart. His IEP has been changed to have PDD-NOS as a secondary diagnosis after Other Medical Diagnosis. Which, I feel like is OK if it gets him the help he needs, I just don't know for sure this is the right thing to do. I am a teacher - and I have seen many children with special needs, so I know I am probably scrutinizing a bit more than others. I guess I just needed to come here and vent because I am not sure what to think of this new development. Thanks for listening to me :) Posted on 04/23/12, 10:23 am |
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Topaz, PDD-NOS is an autism spectrum disorder. There are 3 basic categories of autism: Asperger's, Classic Autism, and PDD-NOS. Our doctor told us PDD-NOS was the "catch all" diagnosis when the kid doesn't quite meet the other two. The NOS is not otherwise specified meaning it doesn't go hand in hand with another serious disorder such as Rett's or whatever.
My 7 year old son was just diagnosed last month with PDD-NOS. It was heartbreaking to hear it finally but it also made sense because he's been challenging in certain ways - mainly emotional/behavioral at home. He does great in school now that he's had reading help and he's never been a problem student. He behaves well but he is a little "odd" especially in his intensity and playing with same age peers. We were advised to get an IEP and social skills training. I hate the label but he needs it to get services. One thing that stuck out in my mind was doctor said it would only get more difficult for him especially around the time he hits middle school if we don't get him intense social skills services now. 
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Thanks Bestmom - do you mind if I ask how he was diagnosed? I just am not sure if the evaluations should be done by someone outside of school.
The thing is that the pediatrician and another specialist that I took him to do not agree with the diagnosis. I think that is why I am so confused. I still have not had another evaluation done by the neurologist yet.
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I don't mind sharing at all. I know how it feels when you get the diagnosis and then feel like you're on your own to go figure it all out. My son's diagnosis took almost a year and a half from the possibility being raised to confirmed. My friend has an autistic son and she first suggested we see a neurologist for his behaviors. So I took him to his regular pediatrician and said we needed a referral to a neurologist. He referred us and that was it for a while. The neurologist saw him and diagnosed sensory processing disorder and anxiety/OCD. She didn't think it was autism but she wasn't able to completely rule it out. So we got him occupational therapy for his SPD which helped.
Then we got asked by school for a meeting due to his difficulty following through with directions. I went back to the doctor and expressed concern about his behavior. He then finally gave us a referral to a developmental pediatrician who made the diagnosis after a thorough evaluation. Now the school is doing their own eval but I'm fairly convinced the developmental pediatrician made the right diagnosis. The thing that convinced me was she noticed his intensity/focus on things he wanted to do and also his slightly odd social mannerisms. This seemed to be last something I had noticed for some time but nobody else did. They would always tell me he is a polite active kid, not sitting in the corner by himself. But they couldn't seem to see that he didn't play WITH other kids - the other kids would try to play with him. Kinda like his way or the highway. He also has tics. Currently, his tic is an eyeroll. A while ago it was excessive blinking. Developmental pediatrician said kids with autism usually have tics and some also have Tourettes. They're both neurological disorders so it makes sense there are clusters of symptoms. I feel that it took too long to get the diagnosis. But kids with PDD-NOS are usually diagnosed later because they don't usually have major speech delays. I hope you find the answers you need. It's better actually that the school made the diagnosis in terms of getting services. Even if the diagnosis is somewhat questionable, the extra help probably can't hurt.
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I am hoping that when we go back to the neurologist he can help us out with some advice. My son goes to OT every other week, the insurance will not cover it, so we have to pay for it.
Right now my biggest concern is that he is so angry at the kids at school. Because of him having a hard time socially he takes every little thing that happens in school and triples how it makes him feel. He came home crying and angry today over something that normally would not bother most 11 year olds, but to him, it was the worst thing in the world. He keeps telling me that he hates his life and it is breaking my heart. I have tried everything - therapy, school social worker, CBT, Medications, and nothing seems to help. I think hormones are playing a big part in his behavior lately, but my heart breaks when he is so angry and sad. I am wondering if depression is part of the PDD. I am not sure what to do next. I am at a loss.
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Hi am just visiting the site to see if you can possibly help me. My son is currently going through evaluations because he has been in OT/PT/ST going on 2 years now and he excelled through them in kindergarten, but now that he is 1st grade he is regressing. He's been diagnosed with ADDHD however, the school psychologist feels he has some much more going on. He aces his spelling test but is struggling terribly in Math, Reading, written comprehension, verbal comprehension etc. He wants my son to get tested by a neurologist because my son has gluten intolerance--genetic markers are 10x higher then a normal child his age. So he's been gf now 2 weeks--we have seen minor improvements in behavior but nothing for attention, comprehension. I am so new to this and his dr said that we have to consider a disorder in the Autism Spectrum--she mentioned PDD-NOS as well. So I though I would start here to see if you can offer me any advice, or recommendations. I read about Biomedical treatments for Autism--Has anyone tried it and if so was it successful? Also--Is this regression normal for Autism spectrum disorder? He was a typical baby--made all his mile stones--we noticed his speech early and worked with him--however now he is developing even more speech problems. Before he would hesitate greatly before saying a word--now he is slurping and hesitating before saying a word. My son has writing problems as well. At this point I don't know if he should see a developmental psychologist who has a years waiting list or if I should pursue a pediatric neurologist. Please help in any way you can.
Thank You Penny
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Hey there to all the new faces!
I do remember the day I first realized the symptoms my toddler were consistent with Autism. It has been 6 years since then. The laws in the US are regulated in the states by the state education agency and the local districts are held accountable. If you are in a school that is competent then that is good, but if you feel that the school is not correct, you need t get an Independent Educational Evaluation IEE, and do not agree until you are sure. I think there is a wide net to include many kids as a simple method, but in reality EACH CHILD is unique and needs an individual evaluation that will give the school the data they need to correctly administer the education and services your child needs to succeed. I just had my other boy, age 13 with dyslexia be released from IEP and now he is on 504. He did not have any change in service, but the way the evaluation determine if his condition interferes with the education or not. He has learned to overcome the dyslexia, to the point that he no longer is academically disabled, but he still requires help and support by IDEA to continue the improvement. The school has to provide what they promise, and if you feel that there is something that is upsetting or not right for his/her success in school, then you need to advocate in writing, and be sure to talk to the principal to get your child sufficient help. I like one label and that is HAPPY
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I've been emailing back and forth today with my son's school psychologist and he said that my son is definitely in the range for a possible diagnosis for PDD-NOS or CDD. I was shocked when he said there are a number of kids in his school that have PDD-NOS when you read online at Mayo Clinic and some of the Autism sites it says it's a rarer form of Autism. Then why is there so many of them in my sons school? To me it doesn't seem to as rare as they say it is and if that is the case then why isn't more research being done for it?
I agree with bestmom4sure, I hate this labeling but in order to get the services he needs to advance in school it has to be done. My son's psychologist is concerned with his regression but he says he's on the higher functioning side, what exactly does that mean when they tell his father and I that he has the IQ and the apptitude but his comprehension is way below the average. I look at the characteristics of Autism and PDD-NOS, CDD etc etc I see partial symptoms from all of them, but what gets me is the symptoms are similar to LKS--can someone help me make sense of all this?
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Sowle - I feel your confusion. I am going through the same thing. I see some characteristics of this disorder in my son, but I am also wondering if it is something else. I don't like to compare him to anyone, but I work with special education students all the time, and I just don't see the same things. My son had a slight speech delay, but it was not major. He always had eye contact and is always affectionate. I know these are not all the criteria, but this is what I hear about the most. I sometime think the schools are too quick to make a diagnosis just so they can place them where they need to be. I know it is a lot of work on their part, and I love the team at my son's school. But, I agree with you that there seems to be too many children out there with this diagnosis. I also read that it is a fairly new diagnosis and a little controversial. Who knows? We all want the best for our kids and sometimes we have no choice but to listen to the professionals. I have done a lot of research, and I am still confused.
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I have wondered about PDD-NOS myself. My 14 yr has it. It is easier for me to say mild autism than PDD and explain it. Sometimes I characterize him as having austic like behaviors. Either way the diagnosis gets him school services. I think you should decide what you are comfortable with telling people. People who understand austim will probably understand what you are saying and those who don't won't know the difference anyway.
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