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PDD-NOS

What is PDD-NOS?

By Candes Meisenheimer

Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, is an elusive condition to define. When most people ask about it they're pointed in the direction of autism information and support. All this usually does is serve to confuse a parent at first because what they're looking for is specific information on a specific condition. Unfortunately, that's the very crux of the matter: PDD-NOS is not a specific condition.

In the Diagnostic and Statistical Manual 4th Addition (DSM IV) we see lengthy lists and descriptions of other autism spectrum disorders such as Infantile Autism and Asperger's Syndrome, but the entry on PDD-NOS is so short I can easily quote it in it's entirety right here:

"This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these."

That, of course, clears up nothing. The fact is, the DSM IV wasn't written for the average person. It was written for the benefit of doctors and other medical and therapy service providers. Parents and individuals are left scraping for understanding. And truth be known, the above passage has the same effect on some service providers, even many doctors, as it does on the average person.

So, what is PDD-NOS in layman's terms?

PDD-NOS, also called ASD-NOS, is a diagnosis that is used when an individual is effected by diagnostic traits of other autism spectrum disorders but does not display a full set as put forth by the description listed for a specific disorder. As well, the individual has been tested for and does not have schizophrenia or any schizophrenic-like disorder, with the possible exception of Schizo Effective Disorder*.

Still too confusing? That's okay. Let's look at it as a matter of examples.

One child of a regular reader, we'll call him Jake, is described as being impetuous, sometimes bossy, and overly daring. Jake was evaluated for Asperger's Syndrome but ended up lacking a requirement for diagnosis in section A:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

2. failure to develop peer relationships appropriate to developmental level

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

4. lack of social or emotional reciprocity

In this section it is required that two trait types be present in order to receive a diagnosis of Asperger's Syndrome, but Jake only had one: A-1. He has problems with eye-to-eye gaze (AKA comfortable eye contact), and his body language is often 'off' for how he feels. This is a child who laughs when he hears something sad or cries when he is given what others believe is good news. But otherwise, he possess no other significant trait types in section A. He fits the rest of the description of Asperger's, but this one single lack in the very first part of the required traits kept him from receiving a diagnosis of the syndrome. Instead Jake was diagnosed with PDD-NOS.

It may seem that Jakes example indicates that those effected by PDD-NOS are very high functioning, but this isn't always true. An adult reader, we'll call her Jane, was diagnosed with PDD-NOS when she was 17 years old and by the common assumptions of what makes a person high function or low functioning she is on the lower end of the scale. Jane, now 29 years old, cannot hold a job or support herself, even though she's incredibly intelligent, with an IQ of 146, and verbal. She's able to maintain friendships when the other person is patient with her quirks and bothers to take the time to understand her. Jane's symptoms are mild and are not considered 'clinically significant', with the exception of two.

Jane's obsessions consume nearly all of her waking hours, and, she says, most of her dreams when she's asleep. She was originally evaluated for Obsessive Compulsive Disorder, but it was ruled out for various reasons. Her obsessions are consistent and persistent over the course of years, but do not interfere in her ability to take care of herself on a personal level. She remembers to eat, bathe, pay her bills, and take her medication, but they effect her social interactions tremendously. She often gets wrapped up in her studies and trials and forgets about planned outings with friends or dates. "A doctor's appointment is important, so I never seem to miss those. But going to the movies with my sister just seems to slip my mind. I often sit down at my computer with the intention that I'll only spend a few minutes looking into a recent idea that I had, and before I know it, I'm an hour late and my sister's calling me. Sometimes she's laughing about it and sometimes she's screaming. [laughs]" she told me in a phone interview.

Jane's other 'significant symptom' is her inability to pick up on social cues or read the body language and facial expressions of others. Her own expressions appear to be congruent with her emotions and thoughts according to her doctors and those close to her, but understanding these same expressions in others requires conscious consideration and thought on her behalf. Jane was evaluated for Non-Verbal Learning Disorder in 2004 but the specialist administering the evaluation decided that her lack of social understanding was more consistent with autism than with a stand-alone diagnosis of NVLD. So, the PDD-NOS diagnosis remained.

"Jane's a nice person, and a lot of fun to be around," her sister told me during the phone interview. "But you have to pry her out of the house to see that person. Her last job was three years ago, and that only lasted for a month. I was at her boss' office at least twice a week trying to clear up some misunderstanding she was having. He was trying, he really was, but I just don't think he believed that her problems were real. Before that was the boss who thought she was mentally retarded because Jane didn't know that a repeated 'flick of the eyes' meant that she was dismissed and stuff like that. That lady actually thought that she should be committed somewhere."

Other cases abound. But like the rest of the autism spectrum, cases of PDD-NOS are as individual and different as the people who are affected by it. Some cases are more severe, and others are barely noticeable. But the one thing they have in common is that they didn't quite qualify as a specific autism spectrum disorder. They've been thrown into the catchall category, and that often leaves the people trying to figure out how to understand those individuals twisting in the wind.

So how does one find the answers to better understand the individual they're dealing with? Support groups and online support and information forums are often the best places to find real answers that can be easily understood. In groups and forums you're stalking to real people who have been where you're at and already asked all the questions you have. They want you to ask questions, no matter how silly or stupid they the questions may seem, because they don't want you to have to go through all the trials and troubles they did. Personal websites are another source of information. Read the personal stories. See how they relate and compare to the individual you're dealing with.

Unfortunately, there are no clear-cut answers. Even with specified autism spectrum disorders the differences in individuals are clear. No two cases of autism are exactly alike. All you can look for is the commonalities in traits.

But the help and guidance is out there. All you have to do is look for it.

Recommended Support Forums:

APOV on Autism (general support and information) 

AutismLink (general support and information) 

AspergerInfo (Asperger's specific) 

O.A.S.I.S. (general support and information) 

Ivillage (parenting support - high functioning) 

Ivilliage (parenting support - low functioning) 

*Schizo Effective Disorder (SED) is not schizophrenia and is believed to have radically different causes than schizophrenia and other schizophrenic-like disorders. Some doctors believe that SED and autism can exist in a co-morbid state, though this belief is not widely accepted at this time.