About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Saturday, February 28, 2009

"PDD-NOS not medically descriptive"

Welcome to my world. A world in which, the more I seek clarity, the more it alludes me. Case and point: in August, when I sought a second opinion for Brad's PDD-NOS diagnosis, the doctor told me she didn't think it was PDD, and then went on to tell me it was PDD. (He met the cutoff when the ADOS test was administered.)

Yesterday, I brought Brad back to that same developmental pediatrician for routine follow up. In the waiting room, I was given a one page intake form in which it asked for a brief update, and left a blank for "concerns." I wrote one simple note: "PDD-NOS s/b DCD?"

Well long story short, the doctor agrees. But rather than write, he no longer meets the criteria for PDD, she writes: "Hypotonia; DCD" and she continues: "PDD-NOS not medically descriptive."

So I think Brad has officially lost the PDD diagnosis.

Oh and we get another label. *eyes roll* "Communication disorder" which in theory connotes expressive/receptive language delay PLUS nonverbal/social deficit. I thought I had heard it all, but I had never heard of that one. She calls it the notch down from PDD-NOS. Great, another label. Yes, I googled it, but it isn't worth sharing.

I'm providing an objective account here, but yesterday was a moving day for me, emotionally. It brought back a lot of memories, some of them unpleasant. A lot of what I'm feeling is anger towards the first doctor who diagnosed Brad and suggested he needed 25 hours per week of ABA. She came up with that little nugget after observing him for an hour. I can say with 100% certainty at this juncture, that was a totally inappropriate prescription for treatment.

Anyway, I'm going to stew on this for a while. The journey isn't over for Brad but I think it may be a different kind of journey.


Jen said...

Wow, what a roller coaster ride you're going on! There are so many labels out there, that even the people dishing out these labels are confused.

A little boy just 2 years old said...

COnfUsing!!!!!!! I am going to have to re-read that whole thing to understand what in the world went on, but you're in my thoughts.

As OUR children grow and learn, they'll come up with all sorts of ways to explain what's going on I guess.

Maybe some of the new research will produce better more accurate testing for our little ones. Our emotions are at stake!!

Have I ever told you my theory that one day 'Autism' will break off into many more specified disorders? I'm not sold that all of it should be under this 'umbrella' term anymore. You remember when women were labeled with 'hysteria' when there was an emotional disturbance a long time ago? That's where I see this evolving from. Quacky idea? Maybe.

rainbowmummy said...

All I can say is thank goodness for mothers and fathers.

Laura said...

ha, tell me about it.

E's mom - I have come to regard the autistic spectrum as a spectrum in the liberal sense (although reasonable minds differ on this point). My problem is taking that liberal, nuanced concept of what the autistic spectrum is, and coupling it with an un-nuanced prescription for treatment and alarmist prognosis. That's just dumb, and harmful. Think about it: 25 hours per WEEK of treatment for a 2 year old who was at his "most autistic" very mildly affected. See, now I'm mad again. LOL. Breathe deep.

A little boy just 2 years old said...

You're back on the rollercoaster. See? What did it? Was it some undeniably cruel turn of actual events pertaining to your son or was it the DIAGNOSIS process itself?

Ugh. Im sorry. It'll get better. You always overcome!!

Laura said...

E's mom, I don't know. I think I just have to go through this anger and vent, and then I will be able to let it go. On that note: there's more. When I went for my routine follow up with that first doc, she kind of bullied me when I told her Brad was only receiving 12.5 hours of services (that includes playgroup). And made me feel like I wasn't, you know, doing everything I should...for Brad. And this is the doctor who didn't even bother recommending PT, which in hindsight, he obviously needed. She was so focused on quantity (not quality) of hours and fitting Brad into a box that she didn't really see who he was. She just sucked, on numerous levels. Okay, feeling better already...

LT-Mommy said...

I hope you find what you're looking for. This is the reason I chose to for-go labels and focus on 'symptoms' instead. I think diagnosising a young child is simply asking for that diagnosis to change. My oldest son's teacher attempted to diagnose him with ASD when he first started school and has since changed her mind. Many times children don't show us what we need to know, even over months of being with them.

A couple other quick notes, don't feel bullied by someone telling you you didn't do all you could for your child. I had to pull my youngest out of his speech therapy. It had become a negative experience for him. He's now talking above his age level, and honestly is on par with his older brother. Lot of harm done there, right?

And I know "communication disorder" may not make sense to you, but it does to me in a way. I see this with my oldest with his language delay. Once children start to REALLY interact (not so much side-by-side play) I think you'll notice the difference more. It also makes sense to me because I think at least once a week I'm amazed at the things my husband comes up with because he doesn't hear me or read my face correctly. Its an on-going thing with him, but I assure you he's made it into mainstream society just fine. He's just a bit of a geek.

Anonymous said...

I like what LT-Mommy said about foregoing labels and focusing on symptoms. I've said this before, not sure if here so sorry if I'm repeating, but I'm kinda glad we've never gone down the road of official diagnosis. Like Brad, Chee is not a clear cut case of anything - so to have labels added and removed would be annoying.

I'm sorry you had such a crappy experience with that one doctor. And I'm with you - ABA would not be right for Chee either. I shudder at the thought.

Dani G said...

I've just stumbled on this blog and I enjoy it. I, too, have a kid who is "a little bit autistic" and while my experience doesn't totally jive with everything you're posting, I am grateful that you're helping to dispel some myths and legends.

anything, sweetie said...

... woah.

i have recently come to think of the spectrum as a colour wheel, and a term like DCD to be about as helpful as the word "blue-ish".

identifying hugely with you here. during these times, i, glibbly, find it helpful to remember that cavemen didn't have to put up with any of this cr*p.

hope you feel better soon.

Shari said...

I've been wondering about a "diagnosis" for my little guy. I talked with my regular ped. recently and he didn't seem to be concerned. I did let Dr. know that son was in the autism program through our regional center, and that made him stop and really look at him. He conceded that he may fall somewhere on the spectrum, but you can't know for sure until they're older. I told him that I'm not too concerned about any behavioral problems, but that my concern was if anything neurological was wrong. He said he would refer us to a pediatric neurologist. We'll see.

Maybe we should seek a diagnosis of some sort, because what my ds is getting in terms of service is minimal. Even in the autism program he gets just 45 min. a week of speech/ot therapy combined, 1 hour a week home visit, and two hours a week in a preschool readiness program. That's it. Not really impressive in my opinion. Actually very discouraging.

My blog is http://www.xanga.com/Silly_Ole_BearIt's not all about my son, but he has been a subject recently.

Quirky Mom said...

I'm behind on my reading this week, and not even reading the comments before mine, so excuse me if I've missed something...

How do you feel about the diagnostic redo? Do you think Brad is more appropriately diagnosed now?

And yeah, I think a year of intensive ABA would've been pretty silly for Brad. Your instincts about him have been good all along, and I think this continues to show it.

Anonymous said...

I find this very interesting. I may have to go back and read some of your older posts to get to know your guy a little better.
My has pdd-nos along with generalized anxiety disorder....although we've had a couple people mention that they don't 100% agree with the pdd-nos.
To be honest...I don't care about the labels as long as I/we can get him help and understanding at school and anywhere else he needs it.

Good luck....I'll be thinking about you the next little bit while you are processing all of this. :)

Anonymous said...

Wow, Laura. What an emotional roller coaster. I suppose one comfort in this is that your mommy instincts have always been right when it comes to what Brad needs. No doubt you will continue to make decisions for Brad that are appropriate for him. How are you digesting all of this - the fact that it may be a "different" journey now?

Judith U. said...

I think it's so interesting how the "one size fits all" can hurt us all in different ways.

Jack is more "classic autism." When he was diagnosed with PDD-NOS at 2, the doctor spent less than an hour, didn't do CARS or ADOS or anything like that and then prompty told me to join the Autism Society of America and seek early intervention services... (which equated to be 4 hours a month total of speech and OT.)

Jack was the poster child for intensive ABA and our doctor didn't even mention it.

If only they could look at our children as individuals who deserve appropriate, effecitve treatments. So much work to be done...

Julie said...

As a service provider (with a child who was pretty far from neuro-typical at one point), I can't stress enough how important it is to follow your "mommy-instinct". This field is really only in it's infancy as far as getting the professionals educated in what they need to know. Some doctors "get it" and will be a big help to you, while others don't really know much yet and will automatically prescribe 25-40 hours of ABA per week for every kid they see because that's what "the research supports". And don't even get me started on the professionals not knowing what ABA means....It's not just discrete trials at the table!!!

My advice to you all is to do as much research as you can manage to do and go with your gut. Will you sometimes make mistakes? Yeah, sure you will. But at least they will be your mistakes. Nothing feels worse than grudgingly going through with a recommendation that you don't feel right about and then realizing that was a mistake too. Do you best and seek the company of people who support you in your choices. Power to the mommies (and daddies) - you can do it!!!

Karen C said...

I just found this site, and I wanted to provide an educator's opinion. (I am also a mother of a five-year-old child with PDD-NOS.)

I know people don't like labels, but labels mean services in the public school system.

Are you aware of the changes that are going to go into effect with DSM-V? Getting the label of PDD-NOS is even more important now because once DSM-V goes into effect, there is less of a chance of receiving early intervention services that are key to your child developing his ability to socialize.