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 15, 2009

"A Little Bit Autistic"

Just a quick note to reflect on recent events. After going through denial and acceptance and all of the turmoil that came with that, and after having Brad evaluated and diagnosed with PDD not once but two times, the latest doctor opinion casts doubt on the PDD dx. In the immediate aftermath, I felt angry. Now, my feelings are somewhat indifferent.

When it comes to mixed messages, it looks like Brad may be in good company. In comments, Three Channels and Goodfountain report similar mixed messages, i.e. between doctor 1 and doctor 2, or between doctors and the schools. And Stimey blogs about early skepticism on behalf of one doctor before getting a dx for Jack. So, in some respects, I'm just following a path that so many before me have paved, online and offline. A path that I'm certain will have many twists and turns.

My long time blog readers may recall that when I started blogging, I called my blog "PDD-SOS." It was really more of a personal vent than it was a blog, but no matter. I retired that name when acceptance starting setting in. If there's any doubt in anyone's mind: this time, the name is staying. Wherever the journey leads from a diagnostics perspective, my sense is that we will be A Little Bit Autistic for quite some time to come.

12 comments:

Stimey said...

It's tough, isn't it? We're thinking about getting Jack reassessed to see how he's changed and what recommendations someone else has for us. I'm sure we'll go through the very same thing you are now.

Laura said...

Good luck to you and Jack. And don't tell your lawyer! ;-)

MOM-NOS said...

I've been through the same....he is/he isn't/he is/he isn't.....UUUGGGGGHHHHH!

I guess I just don't care right now....he is what he is...whatever that happens to be!!! LOL

Good Luck!

Laura said...

MOM-NOS - thanks for the note, it took me a while but that's kind of where I am now.

Jann said...

The problem is, that I think a lot of you are going through, there just isn't any great criteria to assess really young children, so lots of children are being put "on the spectrum" these days. Because hey, it can't hurt, right?

Then parents are left to fend for themselves with the maze of expensive therapies, and many likely unnecessary treatments. And maybe they are not even treating what the REAL issue is (visual processing, auditory processing, or just a receptive/expressive language delay, which is in the DSM.)

It's amazing how the labeling process has changed even in the past few years.

My son is 7 and started EI at age 2. When teachers in a new school district first starting pushing autism on us in 2005 (after two assessments that said otherwise -- and then a 3rd one done without permission by the school system which again, said non-autistic) I started reading the blogs of parents whose children were autistic.

Most of these kids were early elementary school. I simply didn't see my son there...he was too different than what was described in blog after blog after blog after blog. (I found much similarity between those blogs...and they don't really match today's parents blogs.)

But now, just a few years later, I see a different type of parent blogging. One with a really young child that many old-time clinicians won't even try to label autistic at 2 (other than really clear cases.) These clinicians just identify what needs to get worked on, and go from there.

What I think is really cynical about all this early testing that "professionals" today is that they put that deadline on you of 3 years old or 5, and say: "If he's not 'normal' by then, he'll NEVER normalize!!! You've got a deadline, sister!"

"So SPEND SPEND SPEND!!! (And by the way, we have a DAN diet to sell you.)"

In truth, kids learn all the time. My son's language is inching, inching forward. Some day (not soon enough) we'll be all caught up.

Good luck to all of you! Follow your instincts.

Laura said...

Jann, yeah you probably are sensing a real trend. When I was a member of the LT group, I couldn't help but notice parents joining when their kids were 18 months.(!)

As I've blogged, the instability rate for PDD = 20%. That means the remaining 80% dxs are stable. So I continue to believe that early dx is prudent, and advising against it is not only imprudent but dangerous. By my count, there are four studies which validate the ballpark of 80% stability. That's not anecdotal, nor is it blogwatching. That's scientific study.

Jann said...

And if you look at this study, they put the stability of at autism DX at about 63 percent, MUCH lower.



http://www.ncbi.nlm.nih.gov/pubmed/17683451

On our LT board, of course, we have literally hundreds of kids who have been mislabeled by one "professional" or another.

As the autism hysteria grows, the percentage of stable diagnosis is going to plummet.

There's no "danger" in not having your child labeled with autism at a young age. Treat all the symptoms, and skip a label you aren't sure of.

Jann said...

The other thing to note about all of those studies is that they point out that one of the most important factors is to have your child diagnosed by an experienced clinician.

That's where the real problem lies: Too many people without enough expertise doing the labeling.

Laura said...

Jann, the studies are peer reviewed clinical studies, not the statements of much-derided semi professionals that Sowell et al complains about. And even if I stipulate that the 63% number is the most reliable (that study is just one of four), what about those 6 and 10 Jann? Wait and see?

Jann said...

Absolutely wait and see! No need for guessing about an autism label on an 18 month old when you might be wrong 4 or 5 out of 10 times.

But treat all the symptoms right away with floortime, speech therapy, OT...whatever works on your child's issues.

Laura said...

18 months may be premature, but you'll note that the conclusion of each of the three studies (you don't have to google it; click on "Stability...the research" on my sidebar") indicates acceptable levels of stability at age 2. I can see the argument for improving the accuracy of diagnostics. You want to say the spectrum doesn't exist, I disagree but that's your prerogative. But telling parents of classically autistic children to forego dx when the child presents with symptoms at age 2 is anti-science and irresponsible.

Laura said...

ps to Jann - you know the LT group attracts denialists. At least two have come to my blog to complain about the same. So don't even try to tell me that the none of the LT parents have classically autistic children.