Autism/Pervasive Developmental Delay. N.O.S.

The don't have it formally pinned down yet.

PDD NOS can mean, that they don't know what it is specifically... but that there is some kind of a developmental issue.
They will say NOS for a GREAT variety of things... because it is just that... not otherwise specified. Not clear cut. Not cookie cutter specific. Does not exactly match any "DSM" (ie: Diagnostic & Statistical Manual of Mental Disorders) categories. And, PDD NOS is also used because, no 2 children... are exactly alike, even if having the same issues. Or to look at it another way.. it may mean simply that your child does not meet the 'classic' criteria for blatantly 'diagnosing' him one way or the other.

My friend's son for example... is sort of different and marches to his own drumbeat... he is not "anything" really, not Autistic, not Asperger's , not additional ADD or ADHD, not anything succinctly matching any behavioral profile verbatim... but he is a bit... different... and not like other kids in certain developmental aspects... and, he does need an Aide in class. But they (the Professionals) say that whatever it is.. he is very high functioning... they just cannot TOTALLY say he matches any behavioral "problem" or profile exactly. But... he is "borderline" on some kind of spectrum.
Thus the PDD and NOS... designation... at least for now.
They are probably sending you to other specialists for developmental assessments, I assume? Then, based on that... there is then a 'diagnosis' made.
At least this is what I have seen.

all the best,
Susan

The official diagnostic criteria (listed in the manual called the DSM-IV-TR, which is the current version all mental health professionals use) for each possible disorder is typically made up of a list of from 5 - 9 distinct behavioral indicators. A "diagnostic impression" means that your son shows some, but not enough, of the various criteria needed for a full diagnosis. The doctor is not trying to be "vague" or "confusing", they are attempting to be as clear as possible and not jump to an actual diagnosis if your son is not showing enough of the behaviors to justify the full diagnosis.

You can surely get a second opinion, or your son may just need to be monitored over time. I would suggest talking with the doctor about what is recommended for your son, to make sure he gets all the assistance possible.

I think your child's doctor is being cautious not to append a label to your son that could have lasting consequences on several things, in particular on his educational placement options, etc; especially if your son is under 9 years of age. PDD-NOS is a bit of a hodge-podge designation that indicates that the child has not met many developmental milestones and/or that the child meets many indices of atypical development, that is often associated with children on the Autism Spectrum Disorders (ASD). A good site that you may want to visit is the DSM site to read the complete diagnostic criteria for ASD (of which PDD-NOS is a part): http://www.dsm5.org/ProposedRevisions/Pages/proposedrevis...#
Also, while you are there, please read the Proposed Revisions of the diagnostic criteria that DSM is proposing (perhaps for the very same reason that your doctor is leery of calling your son's an actual diagnosis: that unless a child has the classic autistic disorder, differentiating between the other disorders on the spectrum is a bit murky). An actual diagnosis would mean that your child has met the diagnostic criteria specified in the DSM. Another additional comment for terming it an impression may be the age factor. In general, IDEA (2004) specifies that a child below the age of 9 should not be appended a permanent disability label, but rather be termed as Developmentally Delayed (DD) for two main reasons: One, just as a simple function of maturation, the child may out-grow the behaviors that were of concern (and many do), and two, the label allows the child to become eligible for early intervention services, termed in IDEA as Part C programs (for children ages Birth-3) or Part B programs which are pre-school based programs for children ages 3-5.
Hope this helps. If nothing else, having the right information will help you be able to formulate critical questions to ask your doctor.
I wish you all the best with you son!
********
J.: I wanted to add that I hope things go well for you and your son. I have had my share of worrying about my older child at one point when she was diagnosed with a rare and unusual condition (a diagnosis of which was not at all linear and clear---took trips to ER and wrong medications before a brilliant doctor [God bless him] figured what the issue was). I found that reading and getting as informed as I could was critical to becoming an active partner in exploring her treatment options and not merely a passive consumer of medical information which I have come to realize is quite often vague and uncertain (no offense medical moms on this blog!!) I think all this great advise you have received here will be make you a great advocate for your son. This addendum is my way of apologizing for my rather sterile post earlier:)

You didn't specify the age. While there are specific milestones they look for, almost all of them are learned/taught. The first or single child will have a hard time. Boys more often than girls do not advance as quickly especially at early ages. All of these things are normal, generally both parents will agree that something is wrong before they take further steps. If there is a problem it will be fairly obvious. Schools have temporary programs that will give one on one teaching time to the child to help them catch up. A child of one of our friends needed some extra help for 1st and 2nd grade, and now everything is fine without any specific diagnosis or treatment.

You don't say the age of your child but often you can get many varying diagnoses (depnding on who is diagnosing) for a child with autistic-like tendencies. My son has autism and is almost 8. He has no functional language. At 3 he was diagnosed with severe autism, another child I know was diagnosed a year earlier by the same developmental pediatrician as PDD-NOS. Today the other child is 9 and more severe (less language and many behavioral problems) than my son. The diagnostic impression or diagnoses just gives you information to use to help your child. The label isn't as important as getting good information and a good evaluation from an OT or Speech therapist and a plan to help the child.

What kind of doctor did you see? Did you initiate the evaluation, or was this a school based evaluation? If the evalutator was a PhD.working for a school instead of a medical doctor working for you, they would say something like that their findings were "consistent with" the diagnosis of PDD-NOS, but could not actually diagnos your child, which would require a medical doctor, either a psychiatrist or a Developmental Pediatrician. Wtthout that real diagnosis, the school may be able to avoid serving your son.

If your son is very young, sometimes evaluators try to soften the blow. This happend to us with a lesser gateway diagnosis, and the same happens to many parents.

If you have not been to a Developmental Pediatrician, I would highly suggest it. If this was a Developmental Pediatrican, seek a second opinion.

M.

Stupid doctors! Make everything so confusing and stresful. I mean it is good he knows his limitations, but it wasn't right for him to be so vague.

I would interpret that as - he saw characteristics of those diagnoses bur he needs you to see a specialist to give you real answers about severity, prognosis, treatment. He probably did a "screening" type of evaluation and has some certainty that these are the right type of diagnosis but he is simply not qualified to assess your son. Or alternatively he sees some characteristics that concern him but he waants a second opionion to confirm.

I assume he is sending you to see a psychologist or similar to do a more thourough evaluation? There is a lot of overlap on criteria for differened "disorders" and you will get a more specific answer about what the specific concerns are from a specialist. I am sorry you are dealing wiht all this and hope things go well for you..

Check the website of the Autism Treatment Center of America (www.autismtreatment.org). They have sooooo much information and help for you, and it's a loving and upbeat way to help your child. The diagnosis doesn't matter so much. He's your son, and you love him, and they have ways to help you help him, starting from where he is now.