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.

Sunday, March 1, 2009

One more comment on a comment.

I'm not all piss and vinegar here, and "losing the diagnosis" should be put into perspective. He's lost one dx (PDD-NOS), but he kept the other (DCD). As I blogged, I regard PDD-NOS and DCD as overlapping sets with blurry lines. Brad is just moving to a label that connotes a different type of difference. But I think DCD is a better label because Brad's social impairment can no longer be described as "severe", and the label itself may be setting us back at this point. Here in Massachusetts, an "autism" diagnosis is the kiss of death from an insurance perspective. We're losing OT coverage in a week. I'm going to try to appeal. Perhaps, DCD will help.

In the DCD continuum vein, Anything, Sweetie remarks:
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".
Point well taken, but I like the word "blue-ish." So many children with autism and sensory processing disorder are hypersensitive, or a combination of hyper- and hypo-sensitive. On the metaphorical color wheel, maybe they're red for hypersenstive, or purple for hyper- and hypo-sensitive. I think Brad is exclusively hyposentive. Like the color blue, he's cool with his sensory intake and expression. I finally feel like we have a label that fits nicely. I have a good framework to understand him, and perhaps some direction to treat him. Sure there are lots of shades of blue, but we can at least say that blue isn't the same as yellow, can we not?


Patience said...

Wow, a lot of blogging and I had to catch up here!
I thought I'd comment on all three posts here and save space.
One probably harsh sounding thing I'll say is that a typically developing child can be tired, hungry and ill and still look ok and pass an evaluation. A child with a developmental problem can be well rested, comfortable in their environment and have a nice doctor and still raise questions. (been there and done that) It's the "something is off" factor that pings on people.
In discussing labels and early dx's; I agree that the bunker mentality does no one any good but a hard diagnosis/label for a condition that can change has long term consequences. As Canadians; my dh can never accept a job in the USA as my older dd would not qualify for health insurance as she has a "pre existing condition"; this would still apply if the dx was formally removed. Lucky for us in Canada it doesn't matter but in the US; it's an issue.
Finally; I am happy your ds is moving up the dx ladder; this is exactly what happened to my dd so although it's confusing; it's good news.

anything, sweetie said...


the other helpful thing about about the colour wheel analogy (from an AS point of view obviously) is that it helps the perspective that every colour, and every person is on there somewhere. very few people are fully "black", and ditto "white", and i can't imagine what sort of people they might be.

someone (sorry, i can't remember who) commented yesterday that her take is that in time, there will be many subsections of autism. i believe this to be absolutely true, and although i have concerns about what this will mean from an "administrational" point of view, i cannot help but think how far, for example, dyslexia has come in terms of recognition, acceptance and understanding over the last 25 years, and i feel cheered by that. one day there will be mainstream acceptance that not all people on the AS are rainman.

i fully understand the pro's and cons of diagnosis. i am not, for want of a better phrase, laid back enough not to want to put a label on my child's differences, although i was about mine for a long time. and, if i suspect that he is even more different than we previously thought then i want to about that too. i relate to the comment (upon the comment upon the comment..) which said that her child's dx was positive in terms of understanding and better prepared her to deal with her child, but what i will say is that sometimes the recommendations and therapies, and indeed the ways in which children (and their parents..) are handled are poorly judged.

may i also say that here in britain, where my son was diagnosed as severely dyspergic three months ago by a community ped, absolutely nothing has been done other than a referral for OT, for which he is now on a waiting list. i have a letter with his diagnosis on it to show the school, or wave in the face of insensitive other mother's who i overhear discussing my son's oddities in the playground.. but i have yet to do this. there are various foundations and websites i can turn to for support and advice, which i have, and.. that's it. and that's okay with me. i can't help but think that 25 hours of therapies a week would make more of an issue of what is, at present, being managed by me and rudy's other caregivers, i like to think, more than adequately.

anything, sweetie said...

hmm. went away, thought about what i'd just written, and came back wanting to clarify that of course i will be open about my son's DCD status with his school, i have already opened that dialogue and he isn't even there yet.

also, the channels of communication regarding r's DCD are constantly open with the staff of his current nursery (and that's who i refer to as his other caregivers.. there are none other).

what i haven't done is use the diagnosis paperwork in a maternally angry act of playground retribution, although god knows i've been tempted to.

i just wanted to clear that up, for my own sake more than anything. i am phobic about misrepresentation, even on the internet.

Laura said...

Patience, I hear you, and I'm so glad you're sharing your experiences. I really do value your opinion, esp since you're a vet. Oh the politics of labels...another fun topic.

Anything Sweetie, oh playground oddities, yeah, I'm there with or without an ASD dx. Brad is definitely still quirky. I like the dyslexia/dyspraxia comparison, and yes, I would be thrilled if dyspraxia/dcd would evolve in terms of understanding, awareness and support. UK and Canada have much more than US.

Jann said...

I'm glad you are moving closer to a pinpointed, accurate Dx for your son. That makes all the difference.

Before we went to Vanderbilt, we were in the dark as to what was really going on with our son. Once we found out how affected his receptive language was, we could start work on an EFFECTIVE plan of treatment that wasn't bogged down with a bunch of stuff he didn't need.

As you have found out firsthand, poor diagnosing is rampant in this country as everyone gets wrapped up in the ASD hype.

Unlike you, how many families DIDN'T get that second opinion? How many couples are divorced under the weight and worry of the false diagnosis, how many families went bankrupt trying to keep up with all the expensive, largely unproven treatments?

As I posted earlier, children need to be treated for EXACTLY what they have, not some broad "spectrum" that's being made meaningless as every condition is piled on top of it.

Hopefully, soon, science may be coming into play. The doctors who wrote The Mislabeled Child have a blog, and they posted this

"Confusing late talkers with autism spectrum disorders."

VERY interesting blog...complete with brain scans showing the difference about between late talking and autism, and why sensory and behavioral issues factor in to late talking as well.


Laura said...

Jann, thanks for your note, and your support. I think you understand what I've gone through. I agree that the system didn't work for Brad, although the end result was good, in that he received good moderate interventions.

As for the link, I've haven't read it yet (but thanks for providing it and I will read it), but it doesn't surprise me that the neurology of classically autistic children differs from the neurology of late talkers, nor does it surprise me that late talkers have sensory based deficits (or strengths).

Anonymous said...

As a previous commenter said, I am glad that you are getting closer to an accurate diagnosis and understanding even better what Brad needs. Sorry that it has been such a convoluted process, but thankful for all that you have learned and continue to share with us. I cannot begin to imagine the emotions involved with "losing the diagnosis" (but keeping the other).

Laura said...

janeil, you the ironic part is that 9 months ago, I was DREAMING about it. Fantasizing about it. But then acceptance set in. And now it's different. I take it for what it is. He moved from probably on one side of a blurry line to probably on the other side of a blurry line.

Elizabeth Channel said...

We have a host of diagnoses over here and DCD is one of them, given by a well-respected clinical and developmental psychologist.

When we show her our spectrum diagnoses, she flat out disagrees.

I've given up with all the labels at this point and am just moving forward with the therapies that help. My insurance is so lousy that I've got little help from an insurance perspective anyway.

This is such a tough topic for those of us wrestling these situations, and I, too, love "blue-ish."

What I have to continually ask myself is why "blue-ish" sounds so much better than "the rainbow"? Is it because few people really know what that diagnosis means and they have such a definitive idea of what spectrum diagnoses mean, albeit many times incorrect ideas?

Thanks for engaging in this discussion. It is a tough one.