When should PDD-NOS be diagnosed? - Mothering Forums
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#1 of 6 Old 04-10-2013, 03:45 PM - Thread Starter
 
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First off, let me say that I am not the type to be in denial over a diagnosis.  In fact, I'm a big fan of labels because, IMO, without them, you can't get proper treatment.  So this isn't me reacting in denial to the thought of their being an issue with ds.

 

That said...his issues go back to birth.  He was born pissed at the world.  I had a terrible pregnancy (actually, the pg was normal aside from HG, it was the "social disarray" in my life that made it a rough year) and his birth was horrific.  Add to that a strong family history of mental illness from his dad's side and the poor bub was doomed from conception.

 

In infancy, he was high needs.  In toddlerhood, he had sensory issues.  Starting in early childhood, his symptoms progressed to fit what some call "early-onset bipolar disorder".  Yes, I am aware that many in the medical field don't believe in this, but whatever this set of symptoms really is, my son fits the list to a T.

 

We recently started meds.  They are not helping, but that's not the point of this post.  The point is that he was recently given a new diagnosis which his pdoc did not mention to me and of which I only became aware when sitting down at an IEP meeting and looking at a form the doctor had faxed straight to the school.  In the past, he's been dx with Psychosis-NOS, Mood Disorder-NOS, GAD, and Specific Phobia.  Now we can add PDD-NOS to the list. 

 

At first I assumed it was just something the doctor did to ensure the school would accommodate but when I asked her, she said it fit and explained why she felt that way.  I always thought PDD was the most severe form of ASD but I guess I was wrong.  All the kids I know with that dx are non-verbal and have been severely delayed since birth (or since a particular vaccine in infancy/toddlerhood).

 

Here is what she based it on:  Ds has difficulty with feelings.  I say "I love you" and he says "Ok".  He is emotionally selfish.  Maybe one or two times out of ten, if he is in an upward mood swing, he will answer back "I love you, too".  That's it.  That's where her dx came from.  He developed language right on time, if not early.  He has no issues telling me how he feels when he wants something or wants to avoid something (like chores).  He can tell elaborate detailed stories, both verbally and written.  Communication is absolutely not an issue for him.  He is just emotionally constipated.  Basically, he's a guy!

 

I looked it up and the main component of PDD is language delay.  Why would a bipolar child who sometimes experiences periods of flat affect be dx with PDD?


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#2 of 6 Old 04-10-2013, 08:24 PM
 
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My understanding of PDD-NOS is that it is a way of saying, "somewhere on the Autism Spectrum, but not fitting neatly into any clear category". For example, Asperger's is a specific diagnosis on the spectrum, with specific symptoms, but if a kid doesn't have the precise cluster of symptoms described in the DSM, the diagnosis would be the more vague PSS-NOS. Literally, it stands for Pervasive Developmental Disorder, Not Otherwise Specified. How deeply the diagnosis effects daily functioning is a somewhat separate issue. Some kids with PDD blend in pretty much with neurotypical kids, quirky but high functioning. Others are more impacted by their symptoms. Some of this may be influenced by expectations/environment. What I mean by that is that a spectrum kid born into a patient, flexible, understanding family, maybe in a small, warm, therapeutic school setting, would have a much different experience than a kid with the same neurological make-up in a more rigid, less understanding situation.

 

As you are learning, diagnosis is a tricky, fluid art in the world of children's mental health and developmental disabilities.
 

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#3 of 6 Old 04-12-2013, 06:17 AM - Thread Starter
 
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Right, that's what I got out of the reading I did after learning of the diagnosis. Previously, I had the impression that it was more like having autism so severe, the person seemed to have an intellectual disadvantage. That was because all of the PDD kids I knew were not only non-verbal but also severely delayed in their learning. In years past, the descriptive term would have been the "R"-word.

My son isn't by any stretch autistic. I'm not in denial, I just don't see autism in him, nor does anyone close to him. He has mild narcissism and grandiosity from his bipolar disorder. This makes him feel like he is so high above us mere morals we don't deserve his expressions of affection. But he also can be manipulative and a sensory-seeker, which means that if he wants something (a second dessert, more time on the PS3, etc.), or is in the mood to cuddle, hell be all up on my lap telling me he loves me. It's always on his terms and solely for his own gratification. Is that PDD?

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#4 of 6 Old 04-12-2013, 07:39 AM
 
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Was this diagnosis made by a psychiatrist, developmental pediatrician or by a neuropsychologist? 

 

If I were approaching this fresh, and not seeking out psychiatric supports, I would be seeking a diagnosis for a child from a neuropsychologist who would arrive at their diagnosis based on a pattern of learning strengths and weaknesses as well as patterns of thinking that they can see in their many layers of testing. 

 

There are also specific tests used to determine "autism" like features, the ADOS being one of them.  Unless you know what tests were used to arrive at this diagnosis it is difficult for other parents to comment on this.  You are wondering if it is a real diagnosis.  I think that the only way you will know is if you seek a good evaluation.

 

In my experience with this diagnosis, it will change how you see your child's symptoms of mental and emotional health and place into perspective their seeming lack of empathy or "narcissism".  While it may "look" a lot "like" narcissism, children on the spectrum have a difficult time "seeing" the perspectives of others but often their own full range of feeling remains intact.  They can be taught to understand their own perspectives and those of others, using well honed strategies and concrete language and visuals to explain social interactions.  Spectrum disorders are neurologically based and impact many levels of development as a child ages.

 

My child has PDD-NOS.  For him, it now looks like a "language based learning disability".  He's fortunate in that his behavioral issues have washed away for the most part.  He can be quite concerned about the well being of his family and his friends and knows how to show it.  Of course, he can be selfish.  All children to a degree are self absorbed.  It is how difficult it was for him to learn to see other's point of view that made it clear that his issue was developmental and not emotional.  He developed empathy but only after CONCRETE teaching of perspective taking, because, his language learning style is concrete and he has a difficult time extrapolating meaning from language.

 

PDD is the diagnosis which had been used to describe "features" of classic autism but not having all three features, but at least two.  The three features used to diagnose classic autism, is pragmatic language impairment that impacts many if not most of the domains of life, fixed patterns (stims) of behavior or rigid thinking (inflexible....), and a history of language delay. 

 

My son had two....pragmatic language impairment and a history of language delay.  Stims and rigid thinking often characterize autism that is why when a child doesn't have them, people think that they cannot be on the spectrum.  They absolutely can...My son is very flexible and has also NEVER had a stim.  Another important point for you is that at least 50 percent of children on the spectrum have normal intelligence and can also be 2E, twice exceptional, in that they are gifted in some domains of learning while challenged in others.

 

I know you have probably been immersed in the world of psychiatric frameworks for your son to get help for him.  I would, if I were you, read up on PDD-NOS and if you think it just may make sense, you can get him a neurosychiatric evaluation with a psychologist who can help you and your child's school better work with this aspect of who he is.

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#5 of 6 Old 04-12-2013, 07:53 AM
 
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Don't take this wrong, please, but you might learn something that fits from www.childtraumaacademy.org. Although their focus is on children who have been abused, the perspective of brain differences is fascinating. I thought of their viewpoint when you mentioned that your pregnancy was very high stress. Basically, their point is that if high levels of stress related hormones and neurotransmitters are present during fetal and infant/child development, the brain actually develops differently. Physically, anatomically differently. The tone of this site is not blaming or judgmental - just factual and insightful. They talk more about symptoms and solutions, rather than diagnoses, a welcome change to me.

 

Rereading what I just wrote, I think I sound like a salesman. Really, I don't get a commission!


Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#6 of 6 Old 04-15-2013, 06:05 AM
 
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Blessedwithboys, I'm very interested in what you're saying. We are currently in the middle of another more comprehensive evaluation of my DD1 (age 10 1/2). I too am fixated on diagnosis only because she is wholly miserable, and nothing we've tried is working so we are clearly not looking at things the right way. We have a variety of things going on, but suspect Aspergers or similar because she is significantly "emotionally constipated" as you well say. Linguistically and otherwise advanced, but says she doesn't feel love from others (except animals), experiences deep sadness and loneliness but is not sure if she experiences other positive emotions, thinks about a positive experience in a visual picture form, and goes crazy when asked to talk about her feelings because she CAN'T. We also suspect a mood disorder but don't know if there is a connection.

 

So - I have no advice for you, but I appreciate the boat you're in. I too have experience the VAST majority of PDD-NOS diagnoses to be significantly impaired kids (especially linguistically) but agree with pps that NOS is meant to cover a spectrum of mystery. That said, I'd probably be disturbed if she ended up with it. But I'll take any label that will lead me down the road to a child who is not constantly suffering. 

 

Hope to hear your updates, as your situation is informative to me. Wishing you all the best.
Julie

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