Thursday, January 20, 2011

PDD and PDD-NOS {Autism}

According to Wikipedia, the definition of PDD-NOS is as follows:

"Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is a pervasive developmental disorder (PDD)/autism spectrum disorder (ASD). PDD-NOS is one of three forms of Autism Spectrum Disorders. PDD-NOS is often referred to as atypical autism. It lies in between the less severe Asperger’s syndrome, and more severe, typical Autism on the Autism Spectrum. "

According to Wikipedia, the definition of PDD is as follows:

The diagnostic category pervasive developmental disorders (PDD), as opposed to specific developmental disorders (SDD), refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication that have traditionally been referred to as Autism.
Parents may note symptoms of PDD as early as infancy and typically onset is prior to three years of age. PDD itself does not affect life expectancy.

Can someone explain the difference between PDD and PDD-NOS to me?  

Has your child been diagnosed with this?

I feel like no one wants to tell me what's going on.  One of the Speech Therapists even said they aren't supposed to even hint at a diagnosis.  I asked 2 people today if my son could be on the spectrum and not one of them said no.  Over the past 2 years I've seen a regular pediatrician, a developmental pediatrician, 4 speech therapists, 1 occupational therapist, and 1 feeding specialist.

So why don't I have more information?  All these professionals and not one person can tell me definitively that he does or does NOT have some form of Autism.  I hate subjecting him to all these evaluations and specialists.  I feel like I'm running in place.

At least he will be getting speech therapy in the meantime.  I know it will help, I just don't think it's his primary issue.

Muffin fell asleep on the couch after his 3 evaluations today.  He never NAPS, ever...
I don't want to feel like I'm always pushing and fighting.  I  just want someone to tell me what their "professional" opinion is.  Please help Muffin.

If you know anything about PDD and the diagnosis or know of a great place to get more information, please comment or e-mail me.  Muffin had his 4 year well check next month, I guess I'll be talking to the Pediatrician again.


*Jess* said...

Our speech therapist, OT, and Early Interventionalist could not say at all whether or not Jayce was on the spectrum. All I heard time and time again was, "he has red flags" or "he definitely has sensory issues" or "you need to have him evaluated." We finally went to a children's hospital where he was seen by both a developmental Pediatrician and a Child Psychologist. They worked together as a team to say he qualified for a classic autism diagnosis. He had 7 out of 12 of the criteria. If he had had 5 or less, he would have gotten a PDD-NOS diagnosis.

SmartBear said...

I will admit I am a little behind reading your posts. At the risk of giving my professional opinion over the internet, I can see if I can help? It sounds as if Muffin is about to turn 4? It also sounds as if he is presenting with characteristics that are congruent with autistic spectrum disorder. PDD is the umbrella diagnosis and PDD-NOS is the diagnosis that is usually given when symptoms are present, but there are not enough to qualify for the autism diagnosis. (I am not sure why wikipedia would combine the two). PDD is the category in which other disorders (including autistic spectrum disorder) are under. Does this help? PDD can also include many other developmental disorders and disorders caused by chromosomal abnormalities.
When symptoms are present, but there are not enough to meet the diagnostic criteria for a specific disorder, we often diagnose these children with a PDD-NOS label. A large portion of the time these are kids who are very young and we anticipate that symptoms will become more glaringly apparent. SOMETIMES we might be concerned about a chromosomal abnormality that is causing the symptoms. Sometimes I have kids come to me at ages 7, 8,9 who received a PDD-NOS label at 3 or 4 but their symptoms have increased such that they now meet the criteria for Autism or Apserger's (which tends to be more apparent later).
There are several reasons the speech path might have been avoidant, one of which may be that they are not licensed to diagnose. We evaluate together, but the clinicians or MDs make the the diagnosis.
I also think it's important that you get some good information about insurance. With the PDD-NOS diagnosis, he most likely qualifies for what is known as a Medicaid Waiver. This gives him a medicaid card, which might sound scary but it actually helps you to access many more services for no cost. When a child is given a specific disability diagnosis, they qualify for state assistance. It's hard to explain, but it would actually help you to get more services for him and more resources for you. I would need to know what state you live in to help you figure that out. In my state, kids can qualify for a waiver with a PDD-NOS diagnosis but NOT with an autism diagnosis. So, a lot of times, those parents with good insurance plans get screwed.
I hope this helps. In my experience, the professionals are not so great at being straight with parents. I have been known to put the brakes on and put my foot down to help lay it out for parents. It's a lot to absorb and you want answers so you can do what you can for him.
I am a child and family therapist, but now I work in the school system. So, if you'd like, I can answer any school questions you might have as well. It might be best to get him screened at school ASAP?
Sorry for the long heart just went out to you.

Alysia - Try Defying Gravity said...

The NOS meaning "not otherwise specified" basically means that the person has some of the criteria for being on the spectrum, but does not meet the other autism "labels" (i.e. Asperger's, classic autism). Sometimes I've heard it called the "catch all" diagnosis, which means there's something there but we can't quite put our finger on it. Asperger's has one set of criteria, autism another. PDD is on the more severe end of the spectrum, from what I understand.

My son was diagnosed with SPD at age 2 1/2 and PDD-NOS at 3 1/2. he's verbal, can make eye contact - all the things not usually associated with autism. However, he has social speech/skills issues, he couldn't "pretend play", had serious meltdowns at transitions, has serious sensory stuff (hence the initial SPD diagnosis), and couldn't function appropriately in a classroom setting (as measured by his peers). It took a visit to a developmental ped to get that diagnosis. Early intervention and our OT could not give that diagnosis. However, everyone who worked with him before his PDD-NOS diagnosis knew there was something else going on besides the SPD.
I know this is a long winded response to your question, but it was confusing to me too.

After a year of his diagnosis under my belt, I would say that one thing I've learned is to not pay attention to the label itself, but more about the recommendations for services, etc. That's what made the whole difference for my son, and in a year of having OT, speech and an one-on-one aide in his preschool, he's made AMAZING leaps developmentally and socially.
I don't know if that helps, but I'm happy to talk more about what I've learned if you want sometime.

Alysia - Try Defying Gravity said...

I should have said in my first statement that "PDD" without the "NOS" is on the more severe end. I hope I didn't just totally confuse you.

Danifred said...

Here is the clinical breakdown of the two:
I think it does a nice job breaking it down.

On the educational piece, as frustrating as it is, it is unlawful for a service provider to predetermine a label for a child suspected of having any disability. Essentially, it's to protect the child so that all the information can be presented by all parties and then a decision can be made as a team (including you), rather than one person.
Ultimately, I wouldn't worry as much about the label as the services that he is provided. You are doing all the right things by doing this early and being persistent!

Rebecca said...

Wow...this is confusing and I worked in education for years (albeit not special ed). I just wanted to let you know that I'm reading and love the fact that you have educated readers who can help guide you.

Jess said...

Your autism tag caught my eye, and now seeing how old this post is... I scrolled back through your main blog page and have no idea where I saw it. It looks now that you must have a SPD diagnosis?

My oldest son (7 years old) has PDD-NOS, he was diagnosed almost exactly a year ago, but I've only recently begun to mention it on my blog. It's so exhausting, so frustrating... (hugs) But it's good to know you don't struggle alone!