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Found Out Today My Son Has PDD NOS

post #1 of 23
Thread Starter 
I need to vent before I curl up in a ball and pull the covers over my head .we had a meeting at the school today because my son is showing signs of additional issues the doctor said in his opinion my son has PDD NOS Im posting a NON copyrighted discription of what it is . Needless to say after you read the definition you will understand why Im so upset , afraid overwhelmed and a bunch more feelings I cant put into words , I mean we knew something was wrong but knowing .and Knowing (hearing it ) are 2 different things.

If any of you have experience with this please let me know I could use a little encouragement.



Definition
Autism and Pervasive Developmental Disorder PDD NOS (not otherwise specified) are developmental disabilities that share many of the same characteristics. Usually evident by age three, autism and PDD-NOS are neurological disorders that affect a child's ability to communicate, understand language, play, and relate to others.

In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 1994), "autistic disorder" is listed as a category under the heading of "Pervasive Developmental Disorders." A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms listed across three major areas: social interaction, communication, and behavior. When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder NOS (PDD not otherwise specified). Although the diagnosis is technically referred to as PDD-NOS, throughout the remainder of this fact sheet we will refer to the diagnosis as PDD, as it is more commonly known.

Autistic disorder is one of the disabilities specifically defined in the Individuals with Disabilities Education Act (IDEA), the federal legislation under which children and youth with disabilities receive special education and related services. IDEA, which uses the term "autism," defines the disorder as "a developmental disability significantly affecting verbal and nonverbal communication and social interaction, usually evident before age 3, that adversely affects a child's educational performance. Other characteristics associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences." (In keeping with the IDEA and the way in which this disorder is generally referred to in the field, we will use the term autism throughout the remainder of this fact sheet.)

Due to the similarity of behaviors associated with autism and PDD, use of the term pervasive developmental disorder has caused some confusion among parents and professionals. However, the treatment and educational needs are similar for both diagnoses.
post #2 of 23
Originally posted by Dana
Quote:
When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder NOS (PDD not otherwise specified).
I don't have any experience dealing with this disorder, but...

Dana, it would be very difficult for any parent to be told their child has a serious disorder like this. I am sending you and your husband extra strong vibes and prayers to help you have the strength to deal with this and work with your son, so that he can reach his full potential.
post #3 of 23
Dana,

PDD NOS can mean many different things. Each child with PDD NOS is different from any other child with this disorder. So, while some children may be very disabled due to this disorder, others can function extremely well. So, don't panic!

Would you mind telling me what kind of doctor made the diagnosis and what kind of testing did the doctor do in order to make this diagnosis?

The reason I ask is that there are a whole bunch of "professionals" out there who have a tiny amount of knowledge about PDD and think they know enough to make the diagnosis, even though they really have no clue.

Also, what kind of behaviors does your son have that made the doctor think he has PDD NOS and how old is your son?

Feel free to PM me if you don't feel comfortable discussing this on the board.

Renae
(p.s. in case you don't know, I am a doctor and professor of psychology. I teach future psychologists how to do these assessments and have done many, many of them myself.)
post #4 of 23
Dana, I have no experience or any knowledge of this, I just wanted to send you a big hug! I can imagine how very hard it must be to learn that there is something wrong whith you child. But people who have got that kind of news about their children, no matter how severe it is, say it is a shock at first, but then they learn to live with it and once they've managed to change their routine of life (if necesary), it gets very managable.

Good luck! (((((((((HUG)))))))))))
post #5 of 23
A friend's daughter just found out she's autistic (she's an adult)and is doing a special diet as part of her treatment. Her mother had read a book on autism and learned about some dietary problems autistic people have, one of which is dairy. If you'd like I can find out what the book is. Hang in there!
post #6 of 23
Thread Starter 
Kristopher had a nero phyc eval done at Dartmouth Hitchcock Medical Center in New Hampshire , they did alot of testing and today we were sat down by a Dr. at the school with his IEP team to have the results explained to us .

Kristopher for the first time is loosing ground he lost the ability to spell his Name , he lost the ability to open the front door , he just stood there crying .

Hes 10 in the 4th grade and working at a 1-2 grade level , he has profound speech issues both receptive and expressive

we have fought for years to get him help and no one wants to give IT a name , with out a name no agencies will help.

he also has Executive Function issues

I'm sorry if I'm not expressing myself well its been a long day.
post #7 of 23
I am sorry to hear about your situation. I do want to add that my Dad's fiance's sister's son is and Autistic adult. He is very close with his mother. He lives an independent life in a community for autistic people. He has had a positive experience there and his family is happy and secure in his progress and treatment. Just thought I would share a positive thought on this trying situation. I hope all works out well with you and your family.
post #8 of 23
Dana, so sorry to hear this. I have no knowledge of this, but can only imagine how your feeling, because a girl i work with has just found out now that her 12 year old son has "ADHD"(Behaviour problems). Even though she knew from the age of two that there was something wrong with him, no one listened to her!.

It's been a long battle that she's had with the doctors, but thanks to psychologists she got there in the end. So please don't give up.

Susan
post #9 of 23
I have no real advice to give you but I just wanted you to know that I'll be thinking of you and your family. (((((HUGS))))).
post #10 of 23
I don't have any advice to offer either- but I too wanted to add some cyber hugs and positive thoughts to the mix ((((((((HUGS)))))))))))):rainbow:
post #11 of 23
Dana, very sorry to hear about your son but at least now his disorder has a 'name' you will be able to find help and support from other sources.
post #12 of 23
Dana, I am sorry that you have to find out what is wrong with your son and that he has to suffer like this.

I hope that you can get all the assistance that you need.

post #13 of 23
How scary Dana! I'm the eternal optimist, and always tackle problems with education, education, education. I don't know you well, but you strike me as a highly intelligent person that doesn't give up without a fight. Arm yourself with knowledge and tackle this problem head on!!

((((*big hugs*)))) to you and Kristopher!!
post #14 of 23
Thread Starter 
Quote:
Originally posted by Momofmany
How scary Dana! I'm the eternal optimist, and always tackle problems with education, education, education. I don't know you well, but you strike me as a highly intelligent person that doesn't give up without a fight. Arm yourself with knowledge and tackle this problem head on!!

((((*big hugs*)))) to you and Kristopher!!
Thanks everyone I was overwhelmed lastnight , I found a support yahoo group for parents of children with PDD NOS Its been a comfort already
post #15 of 23
OMG - I am so sorry to hear this!!!!
post #16 of 23



hope my hugs make it this time
post #17 of 23
Ok PLEASE consider yourself huged!!!
post #18 of 23
Dana,

The people who evaluated your son are excellent. Make sure you ask them any questions that you have and let them know of your concerns. They are experts who will work hard to help you understand everything you need to help your son.

I am glad you found a good support group of other parents. They will be able to help immensely.

Renae
post #19 of 23
Maybe the doctors you took him to would know of a local support group for you. It would help you to have some local support too.
I'm so sorry your family has to go through this.
He didn't by any chance have a head injury when he was younger, did he? I just ask because our daughter gave us quite a scare one year when she couldn't do math that she had done so easily the former year.She had a hard time focusing and learning. She was just a different person. Then after a year we found out it was problems stemming from a head injury. I know it's a long shot, but I had to mention it just in case.
At least now that you have some answers you can start moving ahead a little. You're in my prayers.
post #20 of 23
I am so sorry Dana. I also have no advice but just wanted to let you know that I am thinking of you and your family.
post #21 of 23
Here in Canada, Autism has been linked to childhood vaccinations! There is something in the vaccine that causes it. It was in the flu shot this year, my little brother got the shot. I'm sorry Dana, stay strong!
post #22 of 23
Dana, I don't know anything about that condition nor of autism, but I just want to let you know that I am sending a thousand vibes, and you and your son are in my prayers
post #23 of 23
Quote:
Originally posted by Crazy-Cat-Lover
Here in Canada, Autism has been linked to childhood vaccinations! There is something in the vaccine that causes it. It was in the flu shot this year, my little brother got the shot. I'm sorry Dana, stay strong!
There has been a lot of panic about vaccinations. However, there is excellent epidemiological research, done in many countries that shows absolutely no connection between vaccinations and autism.

There is more evidence for environmental toxins (e.g., pollution from chemical plants) causing genetic mutations that lead to autism. However, this is an area still being researched. Once the results are fully in, this may be found untrue as well.

Right now, we don't really know what causes autism other than that this is a purely biological disorder.
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