(BIG DISCLAIMER: I am not, in any way, shape or form, giving mental health/medical advice in the post below. The following is an account/analysis of my own experience of receiving a PDD-NOS diagnosis for my son. Please seek professional assistance if you have your own concerns about your kid. The end.)
I have wanted to write this post for awhile now, but I could not for the mother-flipping life of me figure out how to organize it. It's been a year since Carter was diagnosed and 3 years since I noticed that something may be going on. The title of this blog is PDD-WTF, with the WTF signifying the confusion and frustration and ridiculosity that goes with the PDD-NOS diagnosis.
So, instead of making this post all tidy and stuff, I am just going to start....NOW. Carter met all of his developmental milestones either early or on time. He was on top of his shit, I must say, with all of the:
- Cute babbling by 2 months
- Crawling at 6 months
- Standing at 9
- Walking at 1 year
- Spouting out a handful of words before he turned 1
- Stringing two words together at 2
- Verbally identifying 12 colors by 14 months
- Recognizing and naming all uppercase and lower case letters by 2
- Stabbing Cheerios with a straw with stunning accuracy around 16 months
- Mastering puzzles for 4 year olds at age 2
- Reciprocal socializing from early infancy and beyond
There's more, but I am one of those lazy moms who didn't really get into those "Baby's First..." journal thingies. But that's enough to make my point, I think.
What prompted me to get a little concerned about Carter's development were some behavioral and sensory oddities that I couldn't just accept as being normal. There is a difference between a strong-willed child and one who has temper tantrums that NEVER END. And I get it that kids are picky eaters and maybe don't like so much a good haircut from the local barber, but it seemed like anything that Carter touched or was touched by that was a little strange to him caused him to flip out. Like someone was trying to kill him. So when a local MPH who gave him a simple developmental screening at 24 months was concerned about his slight echolalia, I knew we were heading into Autism Spectrum land. She advised me that although it is normal for young kids to be echolalic, it should peak by about 30 months.
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Fast forward to Carter, age 30 months. Still echolalic, although kicking ass developmentally. Well, besides the behavioral/sensory stuff. But to the average person, he probably appeared to be a totally smart & normal child. Although, during one of our many colossal public meltdowns, we probably looked like the Worst Parents in the World of the Brattiest Child on the Planet.
I finally scheduled a Developmental Assessment for him about 1 month before his 3rd birthday. The Developmental Psychologist (DevP from here on) thought he was very handsome and smart, but notices some deficiencies in his imaginative play and eye contact. She also heard the echolalia, pronoun reversals and scripting, but was blown away by his 6 year old level of puzzle skills. I would go through the whole report now, but, as I admitted above, I am lazy. The net-net of it all is that Carter definitely exhibited some autistic behaviors, but not enough for any other diagnosis besides PDD-NOS. I asked her if that meant that he almost had one foot on the spectrum and one foot off, and she seemed okay with my interpretation of the diagnosis. It was almost like she was hesitant to give it, but in the report she stated that the echolalia and other language stuff are not explained by any other disorder beside Autism Spectrum.
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Fast forward to now, almost exactly 1 year from his diagnosis. Carter is still a little repetitive in his speech, but it has decreased ten-fold. Still has the sensory wackiness, but that has also eased a bit. Behaviorally, he is doing much better. Eye contact sucks sometimes, but is perfect at others. Pro-noun reversals are pretty much gone...
...which is why I canceled his one-year follow-up appointment for a re-assessment. I feel pretty strongly that at this point, he has one pinky toe on the spectrum, instead of a foot. Sometimes he trades the pinky for a bigger toe, but I think the main thing is that the issues he has now are not pervasive enough for him to really necessitate a label anymore. Now, I do think that this could change when he gets into formal school, but at the present time he is doing pretty well in pre-school and at home, so we're not going to sweat it. He is still a royal pain-in-the-ass at times, but now that probably has more to do with genetics (from me, with love!) and not so much the PPD-NOS. I think his diagnosis last year also was during a time when some of the skills he did not show the DevP were emerging, as evidenced by the crazy imaginative shenanigans he started roping us into not even a month after the appointment.
In short, I think he is growing out of PPD-NOS.
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And no, I do not think he was misdiagnosed. I have a Master's degree in Clinical Psychology, so I kind of know what time it is when it comes to the assessment process. Not an expert, for sure, but not a layman either. The DevP was very thorough, and I sat in on the whole thing.
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I am sure I am forgetting a whole lot more of the story, and I am positive that more of the details will creep into future posts. Again, this is just our story. Not yours and your kid's, or your neighbor's, or your brother's hairdresser's kid's. PDD-NOS is a particularly interesting diagnosis, in that you can see children like Carter in there along with kids who cannot speak. Sorry for the lecture, but people can get really sensitive about the A-word, even if rightfully so. Because after all, these kids are our babies, for goodness' sakes.
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If anyone who read this ever wants more information about our specific experience, totally e-mail me using yahoo and my ID, pddemme. I am here for you, man.
And thanks, Carter, for letting me write about you, although you didn't really give me permission. Love you, Puppy.
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