I talked to two medical professionals this week: a Health Links nurse and a walk-in doctor. Neither one had heard of pdd-nos or pervasive developmental disorder-not otherwise specified. I could understand if they didn't know what ttyl, rotfl, or byob stand for, but isn't it their job to be up on common medical terms?
I had thought of getting medic-alert bracelets--great if kids are hurt, so the first responders know about their medications and understand their unusual behaviours, in case you aren't there to explain it. But if the paramedics reading the bracelet have never heard of pdd-nos either, what good would it do?
Pdd-nos is a catch-all term for verbal individuals who struggle with social reciprocity (making eye contact, reading facial expressions, initiating conversation, or playing interactively), and who may demonstrate rigidity (inflexible routines or rituals), and have sensory issues (sensitivities to loud noise, flashing lights, tags in clothing, texture of foods, etc.). In other words, people with pdd-nos have symptoms of an autism spectrum disorder, but don't perfectly fit all the criteria of any particular ASD diagnosis, such as Asperger's or Autism. Hence the -nos--"not otherwise specified."
Kids with pdd-nos fall all over the spectrum, in terms of IQ and social skills. They may be more, or less, severe than Aspies; Asperger's just requires the presence of additional symptoms, such as an obsessive interest in an unusual topic (like weather patterns--think "Cloudy with a Chance of Meatballs"). We're sure K. has Asperger's (our obsessive interests have spanned photosynthesis, pipe organs, dirigibles, and Star Wars), but at the time he was diagnosed (age 6) the psychiatrist told us that he didn't give the Asperger's diagnosis until kids were older. So in the meantime, the official word is pdd-nos, which, it turns out, is a meaningless one!
3 comments:
i understand your frustration.
I remember talking to a doc a year or two ago (mind you she was not of Canadian desent...) who did not know what A D H D stood for.
WHAT????
i didn't even bother asking her questions and wlked out. HEllo???
Just goes to show we have to be our children's advocates and stick to our guns, even when the professionals appear clue-less.
L is PDD-NOS, i told you that right?
When we talked last, you mentioned that a new dr. looked at L. and said something that surprised you about him being "on the spectrum," after so many drs refused to consider it. I hadn't heard it was official. How does it feel? (I found that, since we'd waited so long for G.'s diagnoses, we'd already "tried them on" for size and realized they fit, so by the time she was "wearing them," it wasn't as much of an adjustment.)
That's INSANE! I wonder if things are different here in America becauseI hear pdd-nos used all the time. I'm shocked.
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