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

The takeaway.

In comments, LT Mommy and Goodfountain make a compelling case against early diagnosis. These comments have merit, and I could probably be a poster child for the shortcomings of early detection.

My takeaway is different: at 24 months, I believe Brad met the DSM-IV criteria for PDD. During that first evaluation, I recall that, while I was talking to the doctor, Brad flipped over his wooden puzzle, dumped out all of the pieces, and started lining them up on the floor. That stage, when he persevated a lot, only lasted a few months. He didn't respond to name well back then, and he was mostly nonverbal. (When he started speaking, he persevated less.) So I don't fault that doctor for the diagnosis.

I fault her for her prescription for treatment. Effectively, she lumps the autistic spectrum - an extremely heterogenous group - into a homogenous box. If a doctor is going to apply the label liberally, then it's incumbent on the doctor to provide a more nuanced prescription for treatment. And not scare parents into signing up for services that their children don't need. 25 hours per week??? That's a lot of work. If a child doesn't need that, it's irresponsible to make the recommendation.

As I stated above, early detection had its shortcomings in our case. But I know - I'm certain - that there is a poster child for early detection out there. If your child is on the trajectory for classic autism, knowledge is power and time is of the essence. In this blogger's opinion, a parent should not dodge doctors or put off evaluation. The stakes are too high. And no one can force services on your child. The bunker mentality is just as bad, if not worse, than autism hysteria. In this blogger's opinion, there's got to be a better way.

11 comments:

A little boy just 2 years old said...

You know, my take is the opposite of what those ladies are saying about NOT going down the diagnosis trail with little ones. I think that early diagnosis could have made the difference. I think it helped tremendously - and even if that weren't the case - it certainly didn't hurt anything.

Had I not gone for that eval. and heard those words - Yes, Autism - I think I would have been even MORE frustrated with my son and he would have had much less help.

Now, the therapists are not the only ones helping him, I am too. But without that help to teach ME what and how to do it, I just feel like we'd still be screaming and pulling out our hair and crying at why our child is so stubborn and 'BAD'. This diagnosis helps to relieve some of the URGENCY of results and focus attention better on the small steps of progress along the way.

My child has been positively affected by his diagnosis - no matter how many changes the Dx may go through in years to come.

I have always said that the Dx is the means to services. That's what we got. That's what we did. I have no regrets.

LT-Mommy said...

There is a danger for early diagnosis being incorrect though. Different problems require different help. ABA would have been extremely counterproductive for BOTH of my boys, and probably would have set them back even further in speech.

Please don't think we all have our heads in a bunker. I know there are some out there who do. Because I don't accept an (inaccurate) diagnosis does not mean I don't take it into consideration. It ultimately comes down to the fact that my children deserve better than the 15 minutes some have tried to diagnose them on, or a diagnosis from a source that is not allowed to diagnose. If I am going to give them a diagnosis, it WILL be an accurate one and honestly I simply don't believe that can be done with a 2yo. My oldest is now 4yo and I think in some ways it would be stretching to truly identify what causes his speech delay.

ALBJ2YO, you can know your child needs help without a diagnosis. And this is NOT meant for severe cases. In a severe case of autism by all means you should get a diagnosis and get the help you need. This is for more children in Brad's or my son's shoes. The children who at best would be borderline. In those children I don't think it serves any purpose to diagnose them instead of simply treating them for 'symptoms' and treating them on a personal level. There will be plenty of time for diagnosis, if your child is getting the help they need regardless.

As for having a reason that your child misbehaves, I think that comes with simply accepting a child for who they are. My oldest child is extremely cautious. He probably always will be. And he probably gets that from me. It has caused some major meltdowns and issues, but that doesn't mean I get frustrated with him. It means I accept him for who he is and help him learn to cope with that one problem.

I think if the world would be more accepting of individuals, we'd be less in need of any diagnosises.

Laura said...

E's mom - yeah, I feel the same way. For me, it was a real wake up call. Brad was/is the "perfect child" in the sense that he's so independent and plays so well by himself. If no one flagged autism for me, I would have continued on a path of prizing his independence and, bluntly, ignoring him to an extent. He's never been the squeaky wheel.

Lt Mommy - I hear you, and I like your message of acceptance. I've always liked that aspect of the group. I respect that the group generally reveres their kids. The thing that worries me is the russian roulette aspect, but I'll leave that alone.

goodfountain said...

Interesting discussion.

I didn't really conscientiously avoid labeling or diagnosing my daughter. Without a label she was already getting The Big Three therapies (S, O and P), she was making progress, there were not new and alarming concerns popping up. It feels like to start the Big evaluatory process now would be over-kill.

She goes to Kindergarten this fall, with an IEP, and an ASD or Asperger's label to get the IEP.

The reason I'm GLAD I didn't get an eval when she was like right around 2, when she would have surely been Dx'd PDD-NOS, is because I have been lucky enough to avoid the kind of heartbreak and anguish that goes with a misinformed Dr telling me "your child will never [this] or [that]" and I didn't have to deal with sorting out this therapy vs that therapy. We were already in therapy that was working.

When I say I'm glad I didn't go the diagnosis route, I am speaking in a "hindsight is 20/20" kind of way.

Some children will benefit from an early official diagnosis. Some kids, though, just need help where they're delayed. That seems to be the case with Chee.

A little boy just 2 years old said...

Glad to see all the conversation going on.

I will clarify a couple of points for us -

Where we live, if he is not labeled the broad label of 'autism' he gets nothing. No services. Even PDD-NOS gets nothing around here.

Also, 'accepting my child' was not enough. I can accept him as needing more discipline OR I can accept him as having some sort of impairment that needs help. For ME - if someone had not helped turn us in the DIRECTION of autism - I would have had a really hard time changing my parenting ways. Each child does warrant differences in parenting, but I began motherhood with a list of non-negotiables. This Dx has helped STEER me in a better direction for him.

And - the Dx itself gets the services started. The broad Dx (and I do agree it is BROAD) does not, in this case, determine the goals we work on. I work very hard to make sure we are drilling down to what he needs & work on that. So, for us, the Dx HAS in fact helped us to help him. (ABA or other autism specific services are not part of regular EI around here)

Probably one difference I am running into that causes me to come from a different POV is that I am having to fight tooth and nail to get ANY help - so the Dx is on our side.

A little boy just 2 years old said...

To leave an example of what I mean by "I can accept him as needing more discipline OR I can accept him as having some sort of impairment that needs help":

Take 20 months old. He could say so many words I ran out of paper to write them on. Knew his ABCs, Counted to 30, could write his name etc.. Yet, he was only labeling things around the house. He never indicated in ANY way that he was hungry, thirsty, wanted a toy, he was finished, bored, etc... never COMMUNICATED.

But when we sat down to dinner and spent an hour trying our best to be 'good' parents and not let him 'control' us by forcing him to eat what was at the table - only to find that he would not eat ANYTHING.... we needed something to tell us that this was not normal 2 yr old behavior. Because everyone in our circles said it was.

And when he used sign language telling us 'All Done' or 'More' and yet he would throw his plate in the floor in frustration even though he was telling us 'more, more'.... How were we supposed to know that timeout wasn't the best option?

And what about my perfect little boy who spent HOURS reading to himself. That was just his 'personality', right?

For us, a diagnosis was a starting place. If you singled out those behaviors - they are in fact normal for a 20 month old. The only thing that helped me understand WHY he never improved upon discipline was 'autism'.

There are certainly a lot of 'issues' that when singled out are NON-issues for most kids. When you single them out it is MUCH easier to talk yourself out of it even being a problem. If I were to follow the advice of friends, neighbors, and grandparents - I was not tough enough, he'll eat when he gets hungry, it's good to give them their independence, and you're paranoid, stop comparing - would have topped my list!!

If anything, IMO, I believe that my son's Dx will change because we caught this so early and many issues have resolved. I don't think that many of these issues would have resolved on their own - or at least not fast enough for us to enjoy these early years.

That's why the Dx itself was important for us. It helped me see the equation; 1+1+1=3.

We REALLY enjoy his quirks, differences, and WHOLE package. We are able to enjoy our child SO much more fully now.

A little boy just 2 years old said...

One last thing....

I do not mean to say that all children warrant early diagnosis or should even seek early diagnosis.

I am sure there is a story to be told for each child. Our story leads us this way.

Laura said...

E's mom - amen, sista :-)

Shari said...

ALBJ2YO, I could have written your post. Other than we don't have an official diagnosis. My little guy is odd and quirky (and adorably cute), but he would not respond to discipline. When the regional center said "autism" I was floored. In looking back it sure does explain a lot.

Even with them suspecting autism, or PDD-NOS, he's getting minimal services at best. At 2 yrs. 7 mo. he has 15 words, and uses them very infrequently. So he gets 45 min. of speech therapy a week! In reading this discussion I'm seriously starting to think we need to go to an outside source for an official diagnosis to get him any kind of serious help.

rhemashope said...

"a parent should not dodge doctors or put off evaluation. The stakes are too high... The bunker mentality is just as bad, if not worse, than autism hysteria."
Here, here!

Elizabeth J. Neal said...

I was talking to the doctor, Brad flipped over his wooden puzzle, dumped out all of the pieces, and started lining them up on the floor. That stage, when he persevated a lot, only lasted a few months. He didn't respond to name well back then, and he was mostly nonverbal. (When he started speaking, he persevated less.) So I don't fault that doctor for the diagnosis. Takeaway 4 Less