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.

Friday, September 19, 2008

Mythbusters, Part I: The Infallible Gut

No, not the leaky gut, the infallible gut.

"If their child was PDD, they know it in their gut..."

So writes a parent of a so-called "late talking" child. I'm here to dispel that myth. While many parents recognize their child's PDD before diagnosis, in my experience, it's quite the opposite for a majority of parents. In fact, most parents haven't even heard of PDD. Of all the barometers for autism, a parent's gut is perhaps the least reliable. And if your child receives the diagnosis and you cling to your gut, the lightbulb won't go on.

Now I'm not arguing against skepticism, nor am I suggesting that there's no value to a mother's intuition. However, acceptance laced with skepticism is quite different from denial.

But reading the sentence excerpted above was a revelation for me. I had always been puzzled by the late talker yahoo group's mission statement:

This list does not serve those discussing vaccinations, special diets, sensory therapies or knowingly accepted false diagnosis.
How do you knowingly accept a false diagnosis? Does this idea presuppose that the doctor tells you it's a false diagnosis or a diagnosis for services? Does that even happen?

But now I get it. You know it's a false diagnosis, because: you know. In your gut. Your infallible gut, which isn't really infallible.

Update: Note - the late talker group changed its mission statement. The excerpt above was accurate as of the date the post was published.


dawninprogress said...

Sadly people do accept false diagnosis' from all different types of source for different reasons. I've heard of parents accept a false diagnosis so that insurance will pay for services. I've heard of parents accepting false diagnosis' because they themselves need the attention. I've heard of parents accepting false diagnosis' because the school will provide more services to the child, thus alleviating some of the responsibility from the parent actually spending time with their own child and (gasp!) doing it themselves.
Yep, folks accept false diagnosis' for all sorts of reasons. Sad. Some even seek out as many as they can get, even off the wall ones that aren't identified in the DSM-IV, but Wikipedia HAS identified.


Laura said...

Yes and the spectrum is pretend. We know that certain falsehoods must be true in order for your universe to not implode.

And even if I stipulate that yes some parents do want the label so that they can tap into services, that proposition is quite distinct from a developmental pediatrician telling a patient that the diagnosis is false and only provided for services. Which in my anecdotal experience (primary and secondary) doesn't happen. More often than not, it's the reverse, i.e. the parent lobbies for the label and the doctor turns him or her down. And those individuals are not going to be applying for admittance to your group, so you don't really have to worry about weeding them out, do you.

LT-Mommy said...

To this I will simply say I have seen parents who accept a diagnosis, even though they don't believe it to be true. As dawninprogress said they may do it to recieve services, etc.

Believe it or not, for some of us our gut may be completely reliable. My oldest son's teacher was pushing and pushing for a diagnosis of some form of spectrum disorder. I told her I believed her to be incorrect, and I had another SLP that 'sided' with me who had observed him at home, not school. Now that he has been back in preschool for less than a month he is talking and exceling quite well. The teacher has changed her mind. In fact, she believes that if he continues at the rate he is services won't be necessary in another year. Unfortunately, most people are not this willing to admit they're wrong.

Similarly, my youngest has had many areas he's fallen behind and caught up in. Thankfully, no one tried to push a label onto him because of it. He's now caught up in every area, and excelling in some.

The people who are pushing the labels aren't doing so out of maliciousness, they're doing so out of ignorance of the child's true behavior. Spending an hour, and sometimes less, to diagnose a child is foolhardy at best.

Laura said...

Hi, and thanks for your note.

I do value a mother's intuition - I said so in the main post, and it isn't just lip service. Mother has the unique opportunity to observe her child at the top of the child's range.

On the other hand, a mother has obviously a mother's love. And if she perceives autism as the scarlet letter, she's going to go into protective mode. Protective mode isn't a place for truth and probing questions. It's a place of denial.

I'm not saying that everyone who has doubts based on intuition is wrong. I'm saying that the reverse isn't true, the reverse being, if your child has PDD, you know it in your gut. That's just dumb. I've done "gut checks" of autism mothers of children from all over the spectrum, and while there are exceptions, most parents start out thinking in their gut: this must be some sort of mistake.

Laura said...

LT-Mommy - I like your blog. Best wishes to you and your children.

The Cult of Recovery said...

Now dawninprogress and It-mommy, who in their right mind would knowingly accept a false diagnosis of autism? Honestly? If the child only has a speech delay they are still entitled to some therapy. My daughter has autism, yet all she gets is one hour per week of speech therapy for 8 weeks, then she gets 4 months off because of waiting lists, then another 8 weeks of ONE hour of speech therapy.

Do you think I accepted the false diagnosis for that ONE hour? We hired a private ABA therapist and paid out of pocket for this woman.

I did not want my child to have autism. But the reality is she does and so do many of the kids in the Late Talking group. Keep drinking the cool aid.

This subject pisses me off to no end. I love my child and I will anything to help her. I know this blog owner doesn't agree with some things I do, but I have to agree with her about the Late Talking group. No one in their right mind would label their child for free services. Wake up.

Laura said...

cult - thanks for the note. It's a dangerous pathology they have, but their carefully constructed world rests on these assumptions. The spectrum is pretend, their children aren't autistic and a parent whose child isn't head banging and who accepts an autism dx must be some sort of societal leech. All of these things must MUST be true.

Laura said...

cult - I was going to leave you a note on your blog, but you closed it off. As you said, we're not on the same page in terms of treatment, but from one autism mother to another, I just wanted to wish you the best in your journey.

The Cult of Recovery said...

Hey Laura, thanks a lot. I will open my blog up. Doing biomeds you tend to get some mean comments, but I have to get a thicker skin. I enjoy your blog and even though we do different things, I agree with a lot of things I read here.


The Cult of Recovery said...

I also wanted to say, if my daughter was as high functioning as Brad, I probably wouldn't be so crazy about biomeds. Brad is doing very well and I only wish my daughter was where he is. He is a adorable and speaks so well. He'll do well in the future. I would love to not have to do the things I'm doing!

Ruby just started talking 6 months ago. She is not conversational, but very smart. Taught herself to read at 2, can count to 30 forward and backward, she's affectionate, makes eye contact and is social with adults. She approaches kids but doesn't know what to do after "hi".

So, to the Late Talker's groupies reading this...yes she does all of that stuff and still has autism. She also runs in circles sometimes, looks at things out of the sides of her eyes sometimes and walks on her toes. Kids with autism are very intelligent, they aren't all sitting in corners flapping their hands all day like Stephen Camaratas believes. Can you tell I have issues with this?! ha.

LT-Mommy said...

The public school my son attends flat out told us that if he was autistic he would get more services and we should press for that. Flat out. You can tell me my sons are autistic all you want, I have 3 different educated, experienced therapists telling me neither present with any signs of autism or anything on the spectrum. They simply decided to speak late. Will they be a bit behind socially? eh. Maybe. Their father can be a downright idiot in social situations. But autism is not the diagnosis that fits them even though that's the one the school wanted them to have. If you don't believe things like this happen, I'm sorry you're so blind. Public schools DO get more funding for autistic children, etc. and you of all people should be the most pissed off about it! Children who are mislabeled are clogging up the system for those who truly need the help. Services vary by district, but in mind an autism diagnosis will get you 5 mornings or afternoons/week of care and help. LTing means much, much less.

The Cult of Recovery said...

I have just been officially booted from the Late Talkers group! Haha. Oh well, it became a sick fascination for me anyway.

Hmmm, might be time for a second blog.

Laura said...

LT Mommy - four points:

1) The right to sue your school system, raise a shitstorm, be a general pain the ass comes with any special needs dx - autism, "learning disability", even mixed expressive/receptive language. Those rights attach to special needs, not autism per se.

2) PDD is not autism; it's an autistic spectrum disorder. To the extent "autism" triggers a certain ratio (1 to 1), PDD does not necessarily trigger the same. I am not in any way shape or form advocating that parents press for "autism" dx over PDD. On the contrary, parents must accept the diagnosis which is honest (even if it's not the one they hope for).

3) Early Intervention assures me that, with respect to age 3 and up, Brad's dx is superfluous. He's not going to be in the class with severely affected children. They are assessing his needs individually. Given his language and social delays, he would qualify for the same services with or w/o dx.

4) Would you like me to flip this coin? There's lots I could say about the educational philosophy of the LT group.

Laura said...

Cult, LOL they were afraid your child would infect the group. Wear it like a badge of honor my friend. And get ready for the litany of personal attacks. (The queen bee there has to attack on a personal level because her ideas are weak. Note that I've never attacked the parents themselves - just their ideas.) oh and don't TEASE me, yes please do blog...

Jann said...

Laura: I just don't know what you are trying to achieve with your endless criticisms of the LT group.

Again, parent after parent after parent has found that their child were LTers, not autistic, even when the "experts" tried to mislabel them.

How do you account for all these 8 to 10 year olds on our boards who all of a sudden aren't considered autistic amymore because their language came in?

Our own child's journey is unfolding EXACTLY like Vanderbilt said it would.

Living well will be the best revenge.

RE: your comment about eye gaze. Again, that's in the eye of the beholder/assessor. I've had the school folks tell me he doesn't do the proper monitoring, when clearly he does. I see it daily at home. Vanderbilt noticed this right away...as did all the previous evaluators EXCEPT the school people.

Again, my complaint with your whole blog is the "little bit" autistic. The symptoms of PDD are not a little bit. They are severe by definition, they just line up differently than a traditional autism Dx.

Again, by definiton, a disorder severely affects your life. Being depressed occasionally is a WHOLE different ballgame than suffering from depression, for example.

P.S. On a happier note, It's so wonderful to hear about Brad's great progress.

Laura said...

I did a whole two part post about how I account for 8 and 10 year olds suddenly not acting autistic - under the heading stability of PDD. I see the same thing all the time on the autism boards I frequent. It's a great prognosis. But I don't believe you should define the diagnosis by the prognosis. But this is an issue about which reasonable minds can differ.

And while you say I criticize (I prefer to think of it as providing a forum for an exchange of ideas), my rhetoric is significantly less inflammatory relative to that which has been leveled at me.

Thanks for your well wishes. Best wishes to you and your LT. I guess we'll have to agree to disagree.

Anonymous said...

I took my child to see Dr Camarata and it was a very bad experience. They are supposed to look at a video you send in to see the child in their natural envirenment and we did but he admitted that he did not watch it. He was an hour late and only spent about 30 minutes with us and only about 2 of those minutes were spent one on one with my child. Which is funny because he tells everyone to be careful of Dr's that do this. I could go on and on but I just wanted to say please don't waist your money. I now feel very brainwashed.

Laura said...

Justamom - that makes me sad. :-(
For my part, the group pathology didn't get under my skin - it just creeped me out.