What's this "PDD" thing all about?

Posted by Peri, Licensed Psychologist, Board Certified Behavior Analyst

As the psychologist of this group, I feel very strongly about addressing the role of a child’s diagnosis in early intervention, what it all means, and how if effects our families.  In my beginning stages of working in Early Intervention, I spent a significant amount of time doing evaluations for young children; the purpose usually being to diagnose or rule-out Autism.  Now as the director of the ABA center-based program, I rarely conduct evaluations because my current role is to provide clinical and administrative support for the program.  Part of this role involves doing tours and intakes with families; and what I’ve found during this process has made me petrified for families beginning the evaluation process for early intervention.  It frequently boggles my mind with the inappropriate (or mostly complete lack of) information that is provided to parents when their child receives a psychological evaluation.  More times than not, parents walk into my school for a tour and say, “My child has PDD.  What’s that?”

There are two things that horrify me about this question.  First, why are parents being told their child has PDD?  This is not an official diagnosis (I will get into this further).  And second, why didn’t the psychologist explain to the parents what all of this means?!

The purpose of this post is clear up all these questions for parents.  Of course it also serves as my rant as a result of the extreme frustration that I feel with the lack of information and support that is provided to parents during this scary and foreign process of early intervention.

PDD stands for Pervasive Developmental Disorder.  This is NOT a diagnosis; it is a category in the Diagnostic Manual that encompasses many disorders that are often classified with delays in socialization and communication.  These disorders include:

* Autistic Disorder

* Asperger Syndrome

* Rhett Syndrome 

*Childhood Disintegrative Disorder (CDD)

* Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)

Autism is diagnosed based on specific impairments in socialization, communication, and repetitive or stereotyped patterns of behaviors or interest.  A child must present with significant delays in all three areas to meet diagnostic criteria.  PDD-NOS is the diagnosis given to individuals who present with behaviors that are associated with Autism, but these symptoms are not intense or numerous enough to meet full diagnostic criteria for Autism.  In early intervention, you will often hear service coordinators, therapists, evaluators, etc. say that a child has “PDD.”  By this, they usually are referring to PDD-NOS.  So parents – if someone tells you that you’re child has PDD, they usually mean that they fall on the PDD spectrum and probably meet criteria for Autism or PDD-NOS.

Now what does this information mean to you?  When acting as a service provider, it doesn’t always matter to me what the diagnosis is.  I always tell parents when they come tour my school, “We treat the behavior, not the diagnosis.”  Whether a child has a diagnosis of Autism or PDD-NOS or ADHD, or just a speech delay doesn’t effect the services we provide.  But to the parent it matters; and they deserve to know what is going on.  I wish that psychologists would take the time during evaluations to provide this information to parents and to counsel them on what this means for their child and family.  This can be a very scary thing for a family to hear and they deserve all the information and support that they need.  So to all my fellow early intervention psychologists: please help our parents and provide them with the support they need to digest this information, move forward, and do the best they can for their family.  When conducting an evaluation, please set aside some time at the end of the session to talk with the parents about the results.  They deserve to know what's going on.

There is more information on this to come in future posts…I don’t want to overwhelm parents with too much information.  But please know this – it is your right to know and understand this information about your child.  Don’t be afraid to ask the psychologist what all of this means.  It is their job to explain all of this to you.  So if you’re confused, just ask!  And hopefully you can continue to use this blog as a resource to assist in guiding you through the process…