Do you have PDD-NOS?

[Geordie]

All the best to you, Quintin. I'll support you -

 

[Quintin]

hi to all with Pdd-nos . I'm Quintins mommy ( he 4) and also diagnosed about six months ago. I would like to hear from you about growing up with this.

 

[asand1]

I was diagnosed with PDD-NOS on Mon. I was wondering if there are any support groups for people who have this?

 

[Geordie]

Some friend with PDD-NOS said that it's just like he having no specific name, framework of anything. It's a mix-match of AD/HD, ASD and so on...

 

[WildCat]

The files that were sent to my school at the time of my 2nd dx stated that I did even though it wasn't official; in reality though, I fall somewhere between moderate ASD and Asperger's. Sometimes it's a shift between the two depending on the day, it's hard to explain really.

As far as I know it's supposed to be a catch-all diagnosis, when someone doesn't quite fit all of the criteria of one or the other.

 

[breadfin]

Hi everyone,

Just thought I'd chime in. My 5 year old was diagnosed with PDD-NOS. I have self-diagnosed Asperger's (I fit all the symptoms- and not officially diagnosed, my son's psychologist believes it is HIGHLY plausible). I believe my father also has Asperger's.

I really don't feel you guys should feel left out- autism, Asperger's and PDD-NOS are ALL under the umbrella of the Spectrum of Pervasive Developmental Disorders- in the end, the help you or your child receive should be very similar. As well, it can be VERY difficult to actually label young children with Autism or Asperger's because they are still growing physically and mentally so many psychologists will tag them PDD-NOS so they can get the services they direly need. Why wait for a positive label of Autism or Asperger's, which mean waiting for help/support, when you can tag them PDD-NOS, get them into the system until they are old enough to be labelled.

There's also the fact that experts are still figuring out what Autism, Asperger's and PDD-NOS really is (there's quite a stirr about finding the right label for all these "disorders" and then creating new labels to fall under PDD-NOS). For instance, there is now belief that girls/women and boys/men have "different" symptoms and that what was thought was a male "disorder," may actually be very untrue as more girls/women are now getting diagnosed (Tony Attwood).

I really like how Wikipedia explains it:

"The manifestations of autism cover a wide spectrum, ranging from individuals with severe impairments—who may be silent, mentally disabled, and locked into hand flapping and rocking—to high functioning individuals who may have active but distinctly odd social approaches, narrowly focused interests, and verbose, pedantic communication.[51] Because the behavior spectrum is continuous, boundaries between diagnostic categories are necessarily somewhat arbitrary.[40] Sometimes the syndrome is divided into low-, medium- or high-functioning autism (LFA, MFA, and HFA), based on IQ thresholds,[52] or on how much support the individual requires in daily life; these subdivisions are not standardized and are controversial. Autism can also be divided into syndromal and non-syndromal autism; the syndromal autism is associated with severe or profound mental retardation or a congenital syndrome with physical symptoms, such as tuberous sclerosis.[53] Although individuals with Asperger syndrome tend to perform better cognitively than those with autism, the extent of the overlap between Asperger syndrome, HFA, and non-syndromal autism is unclear.[54]"

In fact, there are two sets of criteria for Asperger's. The 1991 Gillberg and then the DSM-IV. The DSM-IV which is used by psychologists has a LOT of problems/discrepancies (as noted by Tony Atwood) and forgets to include motor clumsiness, delays in self-help skills and sensory integration disorder (SID). Tony Attwood, if I recall correctly, also noted that some children don't even have the repetitive/stereotyped motor mannerisms- and most lose this after age 9. So that puts a lot of question on the criteria in the first place. According to what I read in Tony Attwood's book, he uses the 1991 Gillberg when he first diagnoses a child with Asperger's- and then I'm sure he uses the DSM-IV to "confirm" the diagnosis.

The point I'm trying to make is that there is still so much that needs to be unearthed about Autism/Asperger's/PDD-NOS that I wouldn't get caught up with the labels. In fact, you could just as easily say that you fit on both the autism and asperger's forums because your symptoms fall into both. Why should you have to choose. In fact, some peoplle labelled autistic or Asperger's don't always fit all the criteria either- and some learn to cope with a lot of the symptoms- so where do these people fit?

Just my thoughts.

N

 

[robertwnielsen]

breadfin,

That post of yourse really explains it well. I don't know if I've mentioned this before, or not, but when the DSM-V is released, it will eliminate things like PDD-NOS, Asperger's, and umbrella-classify both under the generic heading of "autistic spectrum disorders." I originally self-diagnosed myself with Asperger's, mainly because of the obsessions I have with certain things (like the space program and military aviation, my two biggies)....but about three years ago I was told that I didn't "fit the profile" for Asperger's.....but, isn't profiling **WRONG**?? I would be interested to know where I fall on the 1991 Gillberg.

 

[breadfin]

Yes, I know about the DSM-V- I think this has a lot to do with insurance companies. It is very sad to see where this is going since children who have PDD-NOS and asperger's and who get help when they are young (as I've seen with many children) they actually grow up to be happy, autonomous and productive members of the community. I've always said, get them young and teach them how to cope with their difficulties/differences so that they can grow-up no longer needing specialized care.

The reason I got my son diagnosed was to get services- without a diagnosis, you get nothing- you even need a diagnosis to go private. I didn't bother with a diagnosis because I'm not looking for services, so don't really need a label and I'm comfortable with what I know of myself and because of what I know of myself, I can do my best to better myself and to learn how to cope with my difficulties- I also have a very supportive husband and family.

But the Gillberg 1991, is as follows:

1. Social impairment (at least two of following):
a. difficulty interacting with peers
b. indifference to peer contacts
c. difficulties interpreting social cues
d. socially and emotionally inappropriate behavior

2. Narrow interest (at least one of the following)
a. exclusion of other activities
b. repetitive adherence
c. more rote than meaning

3. Compulsive need for introducing routines and interests (at least one of the following):
a. which affect the individual’s every aspect of everyday life (somewhat)
b. which affects others

4. Speech and language peculiarities (at least three of the following):
a. delayed speech development
b. superficially perfect expressive language
c. formal pedantic language
d. odd prosody, peculiar voice characteristics
e. impairment of comprehension including misinterpretation of literal/implied meanings *

5. Non-verbal communication problems (at least one of the following):
a. limited use of gestures
b. clumsy/gauche body language
c. limited facial expression
d. inappropriate facial expression
e. peculiar, stiff gaze

6. Motor clumsiness:
a. poor performance in neurodevelopmental test

Asperger's and Tony Atwood also add difficulties with self-help skills, including hygiene, as well as sensory integration disorder (SID).

My two oldest sons, my father and myself hit each criteria- my youngest son is nowhere on here, he is exactly like my husband and is in fact high socially gifted.

N
N

 

[King_Oni]

Yes, I know about the DSM-V- I think this has a lot to do with insurance companies. It is very sad to see where this is going since children who have PDD-NOS and asperger's and who get help when they are young (as I've seen with many children) they actually grow up to be happy, autonomous and productive members of the community. I've always said, get them young and teach them how to cope with their difficulties/differences so that they can grow-up no longer needing specialized care.

The reason I got my son diagnosed was to get services- without a diagnosis, you get nothing- you even need a diagnosis to go private. I didn't bother with a diagnosis because I'm not looking for services, so don't really need a label and I'm comfortable with what I know of myself and because of what I know of myself, I can do my best to better myself and to learn how to cope with my difficulties- I also have a very supportive husband and family.

But the Gillberg 1991, is as follows:

1. Social impairment (at least two of following):
a. difficulty interacting with peers
b. indifference to peer contacts
c. difficulties interpreting social cues
d. socially and emotionally inappropriate behavior

2. Narrow interest (at least one of the following)
a. exclusion of other activities
b. repetitive adherence
c. more rote than meaning

3. Compulsive need for introducing routines and interests (at least one of the following):
a. which affect the individual?s every aspect of everyday life (somewhat)
b. which affects others

4. Speech and language peculiarities (at least three of the following):
a. delayed speech development
b. superficially perfect expressive language
c. formal pedantic language
d. odd prosody, peculiar voice characteristics
e. impairment of comprehension including misinterpretation of literal/implied meanings *

5. Non-verbal communication problems (at least one of the following):
a. limited use of gestures
b. clumsy/gauche body language
c. limited facial expression
d. inappropriate facial expression
e. peculiar, stiff gaze

6. Motor clumsiness:
a. poor performance in neurodevelopmental test

Asperger's and Tony Atwood also add difficulties with self-help skills, including hygiene, as well as sensory integration disorder (SID).

My two oldest sons, my father and myself hit each criteria- my youngest son is nowhere on here, he is exactly like my husband and is in fact high socially gifted.

N
N

That's actually the reason I went to a therapist and told him to "hurry"... because I either need to have a DX or have sorted out what my problem is, just because I couldn't live on like the way I did financially... because I was on unemployment. Now I'm still in that category, but at least I'm having it on paper so I can go from there if it's getting a lot harder with laws and such on unemployment benefits.

Also, I agree with what you say... teach children to "handle" it early on. It's something that might have worked for me... years ago. My therapist who gave me my DX told me, therapy isn't going to help you that much, cause you formed a personality, interests, all kinds of stuff and those are way beyond what "normal" people would be like. And giving that up might probably open up a can on identity crisis.

So, I manage it in my own way, but that in general isn't the way the majority would do it. Thus that makes me "weird". Not that I have a problem with being "weird"... if it's not the way I handle X or Y, it's something different... I'll still be me (or weird in the broader consensus). It made me think a lot about my situation now, seeing that I'm 29 now, recently officialy diagnosed, and never gotten into that much problems cause I was able to live in "my own world". At some point I'm bound to get out of my own world and in the "real world" and that's where problems started... but I already was 27 at that time. So now I'm in a situation where I'm deemed to old to get education or a degree (without paying it myself; which I obviously can't) and I'm way to "bright" (their words) to land a job where no formal education is needed (they just expect problems with me not being that stupid uneducated guy, amongst a bunch of actual, supposedly, uneducated people and they can just tell I don't mix in with others that good, cause I'm totally not a people person.).

I browsed through the Gillberg list and from memory just thought about what my therapist told me when I got my DX and her arguments on why I am on the spectrum. Apart from delayed speech development (in fact I was way ahead my age in regards to speaking; So for what it's worth it's not really normal either way) and the 3b. point (which I can state that I don't really interact with a lot of people due to personal choice; so it's hard to pinpoint that) I kinda hit every single one of those in that list.

 

[Brownbeard]

New guy here, 30 years old, diagnosed with PDD-NOS during high school because I was one criteria off an Asperger's diagnosis. I remember thinking something like "great, I don't even fit in with the aspies." Not that there were many aspies in rural Oregon to fit in with, mind you.

I'm cautiously optimistic that the new diagnostic classification scheme will actually bring some of the lesser-known shades of autism to light in the public consciousness. I say "cautiously" optimistic because I have nothing firm to base that assessment on, and will not be entirely surprised if it does not turn out that way.

 

[MrTiger]

Hang in there! I have the same diagnosis as you, and I am from Norway. There are people around the world that feel like you. "Is it just me?".NO! IT IS NOT just you! We are millions, and we have a voice. I just want to make a difference. The one thing YOU have to remember, is that you can make a difference on your own. Do not get depressed, bacause then THEY win! A wise man once said that: "It`s so far out, the only way out, is in". But the only way out (to kill yourself), is not "in". If all else fails, survive to make them suffer! THAT is the thing that is IN!

 

[LectoriSalutem]

I have PDD-NOS and ADD. Usually people who don't know it, don't see it: I can manage quite well on my own. People don't realize I have more difficulty with some things than neuro-typical people. It's OK though as long as things don't get out of hand. Some people observe that I can react a bit weirdly sometimes.
I don't know any women with ASD in person.

 

[greenlantern]

I am very new to this site. Hello all! I too have Pervasive Developmental Disorder Not Otherwise Specified. I was diagnosed a few years ago and it helps answer so many questions as a child. I suddenly had an ah ha moment. However, as an older college student, it helped a lot. I was able to focus and pursue a triple major and then go on to grad school to be a librarian. I feel that the librarian occupation is a perfect fit for me, except for the social interacting. I remember having other jobs and being so frustrated because I never knew if I was doing a good job or not. I could not read the body language. Anyone relate?

 

[robertwnielsen]

I am very new to this site. Hello all! I too have Pervasive Developmental Disorder Not Otherwise Specified. I was diagnosed a few years ago and it helps answer so many questions as a child. I suddenly had an ah ha moment. However, as an older college student, it helped a lot. I was able to focus and pursue a triple major and then go on to grad school to be a librarian. I feel that the librarian occupation is a perfect fit for me, except for the social interacting. I remember having other jobs and being so frustrated because I never knew if I was doing a good job or not. I could not read the body language. Anyone relate?

YES. I think that's a major problem I've had with jobs...not being able to read body language and not knowing whether or not I was doing a good job.

 

[LectoriSalutem]

I've always gotten comments that I should pay more attention to the costumer, while I thought I was doing exactly that. I always noticed that would prefer the repetitive, solitary chores over the ones where I had to interact with people. When I was working in a store, I would prefer unwrapping new articles over helping costumers, when I was working in a restaurant I would prefer washing dishes over waiting tables. I never though much of it, until I got my diagnosis a couple of years later. Now it makes perfect sense.

 

[robertwnielsen]

I've always gotten comments that I should pay more attention to the costumer, while I thought I was doing exactly that. I always noticed that would prefer the repetitive, solitary chores over the ones where I had to interact with people. When I was working in a store, I would prefer unwrapping new articles over helping costumers, when I was working in a restaurant I would prefer washing dishes over waiting tables. I never though much of it, until I got my diagnosis a couple of years later. Now it makes perfect sense.

I've had just the opposite problem--comments that I paid too much attention to the customer--let me explain. Up until recently (I've been unemployed for almost six years), every job I've ever had has involved customer service of some sort, and most of them have been on the phone, having to look up customer records and such...and usually, while I was pulling up those records, I'd always converse with the customer...about where they lived, current events, sports, whatever might cross my mind at the time.) I'd always do what I was supposed to do...but not without some...extra-curricular conversation.


But one of the last jobs I got fired from, I got fired for not paying enough attention to one specific customer--I was working at Walgreen's covering the front register (my normal job was in the photo department), and was in a bad mood because of some things that my parents and I were fighting about...and didn't pay word one of attention to the customer I was checking out. No "Hi, how are you?" or anything like that--the reason being, not two weeks prior to this incident, I had another incident: I was stocking shelves and a customer came up to ask me a question--and I was so focused on what I was doing that my response came out, quite frankly, rude. And I was told in no uncertain terms that the next time it happened, I would be terminated. SO, seeing as I was in a bad mood anyway (when the incident that caused my termination happened), I figured the best course of action would be to just check this customer out, and not say a word. *BIG* mistake--the very next day, I get called into the manager's office, told the situation, and told that I was terminated. I remember saying, "I always figured that when we had this conversation, it'd be because I was talking too much to people..." And the manager said, "Well...I have had a few comments about that, but I let them go, because at least you were talking to them...and you knew a lot of the customers, so it wasn't that big a deal." (A lot of former classmates of mine came into that particular Walgreen's, plus they got people from the National Guard base, which fed right into my obsession with the military.)


Like you, though, I would have preferred being a stock person to actually waiting on customers--which never made sense until I got my diagnosis a few years ago. It makes perfect sense now, albeit a few years too late.

 

[mouhican]

Hello,
I just joined this group.

My daughter was diagnosed with PDD-Nos at age 3, but since she was late in developing her speech, early intervention theraphy was given at age 2. She is continuously having her OT till now, and she just turned 4, our main problem is having a conversation with her, though she has eye contact already, she can't express herself yet with words. She had speech theraphy at age 3, and was stopped as her therapist died. Now she is just starting again, since my location has a very limited speech therapist. I would like to ask, will her speech developed? She's in a regular school. She can answer the Teacher's question since it's just identify numbers, animals, shapes and colors. I am just worried if I'll be able to have a conversation with her.

 

[Belinda]

Hello, My 4 1/2 year old daughter was diagnosed by her school with PDD-NOS and ADHD. We have an MRI scheduled for next week and an appt with a Developmental Pediatrician the end of next month. So I am very new to things although we have been living with the challenges it presents us as parents for sometime. It seemed to really kick in over a year and a half ago after our move to another state. I am interested in meeting other parents walking this path.

 

[Quintin]

Hi again, Quintin's mom . Quintin was diagnosed with PDD-NOS 2 years ago , he is now 51/2 years old. He is doing very well thanks to the extraordinary teachers at his Montessori School. He will be going into grade one next Sept/2013 . As a family we have decided to continue in Montessori school, as public will not accommodate any discrepancies in "normal average" children.
Look into Montessori education in your local area , I highly recommend it. They allow children to learn at their own pace. Quin is exceptional in some areas & far below in others. In just two years I've notice a vast improvement in his all round skills . It's amazing how things are going. Although he still sticks to his VERY LIMITED diet .

 

[Undiagnosed]

I have to go and google PDD NOS..... lol...... Im clueless