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, August 9, 2008

On biomedical treatments, Part II.

Five more reasons I don't dabble with alternative treatments:

1) Profiteering;

2) No proof of effectiveness for autism;

3) Some of the treatments (e.g. chelation) are predicated on the theory that vaccines cause autism, which theory is unsupported;

4) Some of the treatments haven't been proven safe (see, e.g. hyperbaric oxygen chambers and "oxidative stress relief"); and

5) The morbidity rate.

Part of the problem, of course, is that these treatments aren't regulated and are not prescribed and administered by mainstream physicians, hence the "alternative" label. If one of the treatments described in this post were actually proven effective (by hard science, not subjective testimonials) and move over to the mainstream, only then would I consider them for Brad.

30 comments:

Anonymous said...

You dabble in subjective unscientifically proven diagnosis, but not subjective unscientifically proven treatments. Interesting.

Laura said...

????

What does that even mean?

If nothing else I am the model of consistency when it comes to skepticism - skeptical of ABA, skeptical of Floortime, skeptical of Brad's diagnosis and skeptical of biomedical interventions. No inconsistency there.

Anonymous said...

So you mock treatments for a disorder you cannot objectively determine your child has so you have no objective reference to base your opinions.

Anonymous said...

Read more of her blog anon...she is hoping for a spontaneous recovery! You know how often those happen. There are studies done on the gfcf diet but they don't fit into her 'skepticism' apparently. She'd rather make fun of people who are actually helping their children live healthy lives.

Why not just try the diet? Milk and gluten aren't doing your son any favours. You're going to be waiting a long time for mainstream medicine to pick up on this stuff and your son is the one who will lose.

Laura said...

Hi,
Thanks for the notes.

After seriously considering the autism diet, I passed on gf/cf for three reasons: 1) Children on gf/cf suffer deficiencies in bone density; 2) the latest research casts doubt on the "leaky gut" theory; and 3) general ambivalence about the need to make Brad less autistic, or whatever.

A little boy just 2 years old said...

You posted a comment on my blog a few days ago.

What about vestibular and procieptive (sp?) function? Any issues with muscle tone? Most children who have difficulty sustaining extended gaze have vestibular dysfunction. If you haven't done so yet, you may wish to read The Out of Sync Child. I highly recommend it.

Also, what about bilateral coordination? Does he favor one hand?

FYI: we get 3 hours of OT per week - 2 at my house through early intervention (the state) and 1 through a private OT through our private insurance.


I have no idea what vestibular and procieptive function are (but I will look it up)... and the OT didn't mention them. His muscle tone is just fine. No problems there. He has great eye contact, but his IFSP does say something about his gaze not being extended.

He writes only with his Right hand, but otherwise I dont think he favors.

We are being offered 1 hour of weekly therapy through the state program.

On his diagnosis, they have told us 'Autism'. They will not go any further than that until he is over 3 yrs old. MY suspicion is that we will end up with a diagnosis of PDD-NOS or Aspergers, but development is so different for every child at this age, who knows.

A little boy just 2 years old said...

Oh & I wish anonymous people would just leave your blog alone. I read such negativity on the comments. Why pick fights?? I don't understand, but I rather enjoy your blog & read with an open mind - as I WISH others would do.

Anonymous said...

You are a model of consistency. You are generally ambivalent about absolutely everything concerning ASD.

Laura said...

anon - correction, I'm skeptical of unproven treatments and ambivalent about "curing" Brad.

Not Just a Label - Interesting. That makes sense about holding off on PDD versus Asperger's until age 3. On the sensory stuff, just goes to show that every child on the spectrum is so different. Best wishes.

Anonymous said...

If you are ambivalent about some subjective information, why aren't you ambivalent about all subjective information?

To be consistent, your child hasn't been objectively diagnosed with anything and will never have ASD because you will never receive an objective diagnosis on the spectrum.

Laura said...

Anon - there are no biological markers for autism. That's not to say that a diagnosis can't be performed objectively. The double blind controlled studies described below will, I'm sure, rely upon objective scientific observation, e.g. of the decrease (or lack thereof) of autistic behaviors.

My skepticism about Brad's dx was borne from Brad's particular evaluation, not the process of evaluation in general. Brad's eval lasted one hour, with 15 minutes of discussion with me in the beginning and 15 minutes of discussion with me at the end. She performed the evaluation in her office, and at the conclusion she typed Brad's name onto a form dx letter, and sent it to print, in her office. Observation of Brad lasted a grand total of 30 minutes. At one point, she said that due to Brad's age, she could be wrong about the diagnosis, but she'd rather provide it to me so that he can get services.

I've compared my story with numerous others, and I'm pretty certain his eval was below par in terms of duration and quality. That's why we're getting a second opinion at a different center. If you care, that appointment is on Friday and will last 3 hours. I'll be sure to post the results.

Anonymous said...

Myth or fact:
"That's not to say that a diagnosis can't be performed objectively."

Answer: Myth

There is absolutely no way in any DSM to objectively diagnose any ASD and there is no such thing as "low" or "high" functioning in any DSM.

A correct diagnosis in the DSM is determined by selecting from several choices of subjectively defined behaviors and measurement criteria.

Anonymous said...

Your described a second opinion, not a double blind controlled study.

Laura said...

anon (x2) - What's a "subjectively defined behavior"? A behavior is either present and empirically verifiable by a neutral observer, or not. Low versus high functioning has nothing to do with this discussion. And the studies which I defer to rely upon objective empirical observation, just like a good evaluation. The purpose of a diagnostic evaluation is to diagnose, not evaluate the efficacy of a treatment, so comparison to placebo doesn't even make sense. Nice google cut and pasting though. Next.

Anonymous said...

As usual, you are being subjective in your analysis as well. You must also be a Google U PHD.

"And the studies which I defer to rely upon objective empirical observation"

Please provide these studies and reference how they can possibly be "objective".

Comparison to placebo was referenced by you. Are you confused between the science of diagnosis and the science of treatments because you posts illustrate that you are.

Laura said...

anon - Diagnosis of autism relies entirely on empirical observation of behaviors. The same is true of any diagnosis of mental illness. Because there are no biological markers, it's social science, not life science and not chemistry. But it IS science, and it's not pseudoscience.

A objective observation is made by a trained professional with no bias, unlike a parent.

The studies I was referring to were the ones I blogged about below. Efficacy of gf/cf will be measured by empirical observation by a neutral observer. Ditto for the others I mentioned.

Anonymous said...

To answer your question,

“What's a "subjectively defined behavior"?”

Answer:

The diagnosis criteria for ASD. If it wasn’t subjective, there would not have been any changes between DSM-III and DSM-IV in the criteria. There was a huge SUBJECTIVE change. (Voted on by the APA, publisher of the DSM)

Also
It is SUBJECTIVE which behaviors in the DSM-IV a professional uses to diagnose your child and how THOSE behaviors are measured.

If your child has ALL the criteria in the DSM-IV then he will also have multiple diagnosed disorders. There are also combinations of ASD criteria that you child may not qualify for an ASD diagnosis.

Anonymous said...

Trained professional are just as human and biased as parents. Some of them are both trained professionals and parents.

Laura said...

A trained professional obviously has qualifications that an ordinary parent doesn't. And on the issue of bias - I'll go out on a limb here and assert that most mothers love their children, most clinicians and doctors don't love their patients, and that love clouds judgement.

Anonymous said...

"I'll go out on a limb here and assert that most mothers love their children, most clinicians and doctors don't love their patients, and that love clouds judgement."

I will counter that doctors will be biased to diagnosis if there are additional office visits or treatments to be gained because greed clouds their judgment or lawsuits if they don't give the diagnosis the parent's want.

Anonymous said...

I will also counter that doctors will tell you to wait or not diagnose if they don't want to deal with the parent, also a bias.

Judith U. said...

Laura,

Keep the faith sister. You are honest and intelligent. I can't wait to hear about Friday's appointment.

Anonymous said...

Well, where to begin....I don't think you can be "A Little Bit Autistic." The DSM criteria is that the markers be severe impairment, not mild.

And as to your comments on a certain Tennesse clinician, I'll say this. We've seen him, and found that he told us things about our son that we had not even shared with him...his diagnosis and understanding of our child was that spot on.

And, his DX also was the same as 3 other earlier DXes we had....but he was the only one to pinpont our son's language challenges. The others were just baffled as to what was going on.

Even cursory research shows there's huge diagnostic substitution going on these days, and gullible parents are being thrust into the Autism thrashing machine, even when what their child has is a language disorder.

Laura said...

oh I don't doubt he knows your son. He's the go-to person for the is-he-or-isn't-he crowd. He's probably seen significantly more PDD patients than my own developmental pediatrician. No arguments there.

What to do with that wealth of experience, what to call that condition, and how to advise parents is the real controversy.

Anonymous said...

Again, you leap to conclusions without doing all your research.

Your view seems to be that all the members of the LT board head off to Vanderbilt to get a rubber stamp diagnosis.

However, if you spent any time on the boards, you would have known that several parents reported back that their children WERE given PDD-NOS Dx at Vanderbilt and they decided the LT board wasn't the right place for them.

These are researchers who FOLLOW THE SCIENCE! They don't "make up" DXs that parents would like to hear.

For example, my son had a CARS test done when he was 4 in the Midwest (he came up in the non-autistic range)...and guess what, "that certain doctor"'s score was the same on the CARS(well, one half-point different) when we saw them at age 5. He had no idea the previous CARS test had been done. Kinda torpedoes your basic premise about them, doesn't it.

And my DS was not labeled an "Enstein" there...his IQ was normal.

The LT board is a self-selecting group, so you are seeing people there who highly suspect the autism dx is the wrong one for their child, so it skews one way.


The other thing you fail to note...not everyone has their non-austim Dx from Vanderbilt. But people tend to travel there so they get a whole, lengthy evaluation with EVERYTHING on the table, not just autism.

Laura said...

Anon wrote:

These are researchers who FOLLOW THE SCIENCE! They don't "make up" DXs that parents would like to hear.


Camarata has gone on record as rejecting the "autistic spectrum". See link: http://www.postchronicle.com/cgi-bin/artman/exec/view.cgi?archive=42&num=114759

So yeah, if he slaps the "mixed expressive/receptive communication disorder" on a child who presents with PDD, then HE'S MAKING IT UP. And based on his public statements, PDD doesn't exist. Maybe he regards those with the PDD label as misbehaved little brats, like his friend Savage.

To be clear, I don't doubt you personally or your son's diagnosis. If he was seen by some one competent, I have no reason to doubt the outcome.

Anonymous said...

Again, Laura, wrong. (And nowhere in that article does it say that he rejects the autism spectrum that I can find. But it's true they don't give an ASD Dx, because its considered imprecise and you can get more accurate than that WHEN YOU KNOW WHAT YOU ARE DOING.)


He Dxes children with PDD-NOS and autism, so it's pretty funny -- and wildly inaccurate -- that you suggest otherwise.


Again Laura, find the statement that he says PDD-NOS doesn't exist.

And he doesn't "know" Savage. Did you listen to what he said on that program?

Anonymous said...

A correction: I do see now the comment about ASD in that article (I hadn't scrolled all the way down.)

One of the points he made to us is that there is a school of thought that all LTs would be on the spectrum. But since that would put him personally on the spectrum, (he didn't speak until around 3) it hardly seems like a reliable Dx.

They have a 90 percent plus Dx accuracy rating (remember, they follow kids for years). Some of the people who started the LT board now have high schoolers, and it's quite obvious that Vanderbilt was right, and the other DX's were wrong.

And if you've ever had the opportunity to see them actually work with kids, you'd know how wrong you are about their work and how really good they are at what they do.

They had my son talking easily in 5 to 7 word utterances within 10 minutes, when he normally tries to get away with two or three.

Your son seems very young to have a PDD-NOS Dx, especially when you seem so unsure of it yourself. I hope you get a DX that makes sense to you, and a way forward to work with your son that's best for your family.

Again, look at my facts, Laura: My son got the same Dx at Vanderbilt I'd gotten at 3 other evaluations elsewhere in the country, only this time, they actually gave us a WORKING plan to bring his language forward. And when we went back a year later, the testing showed what we pretty much suspected: His language had pulled forward 8 months. Pretty good, considering his issues.

We have several more years to go, but we're confident we'll get there.

Anonymous said...

I belong to the LT Yahoo group. I joined it when I was in deep denial about my child's autism. I loved how so many people on the list had children who were so much like my daughter. I couldn't believe it, autism WAS being over diagnosed I thought.

Then reality hit and I realized that neither my daughter nor a lot of the kids on the LT list are merely late talkers, most of them have autism. The mothers are people like me, just looking for a way around the "A" word.

The problem I have with the Camaratas is this, they follow so closely with Thomas Sowell. Thomas Sowell is a right wing economist, what business does he have making up his own diagnosis of "Einstein Syndrome"? Because his son was most like autistic, but he believed was far too intelligent to be autistic, he wrote his silly book.

Now people are missing huge opportunities to help their kids at a young age because they fall into this trap of denial and the Camaratas aren't helping. The majority of people on the list get the same diagnosis over and over 'mixed expressive/receptive delay' they also go on about how stubborn their kids are, late potty training, oh and that darned 'eye thingy'! That was when I woke up and realized there is no 'eye thingy' the child is deficient in vitamin A like a lot of ASD kids.

The LT group is scary in my opinion. It's extremely heavily moderated and most of my posts were never posted, even when I was just trying to help someone.

I really wonder why these people seem to think that ASD kids aren't intelligent? My daughter started reading at 2, she learned numbers and letters early, no she isn't in the Einstein syndrome, she has autism. My issue now is bringing her out of this autism. I do believe in biomeds, DAN! docs and diet. In 10 months she has gone from nonverbal to well over 500 words, she is alert, interacts, she is healthy and eats a large variety of foods. I also supplement her with things like Vitamin D.

I wish you were allowed to talk about this stuff on the LT list so that mothers there could see that there is another way to help their kids. Sitting and waiting for a visit to Nashville or going from therapist to therapist is just time wasted. You need a healthy kid who feels good in order for him to learn and want to learn. Sorry so long.

Anonymous said...

I just realized I posted this to the wrong entry. Sorry this was meant for the LT entry.