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Autism. What's in a name?

Genie_in_a_Bottle_by_phuzzypanda By Kim Stagliano

As expected, the mainstream media outlets who couldn't wait to announce that the Vaccine Court Special Masters found against three cases earlier this month, thus, "closing the door on the autism/vaccine debate forever" have said little to nothing about the current case, by the same court, which awarded a large judgement to a family for their child's vaccine-induced autism.

The diagnosis code selection is subjective.  A PDD-NOS diagnosis can be a function of a doctor trying to soften the blow of "the A word" for a parent. It can also be based on geographic differences in terminology use, I've found. Not to mention the skill and experience of the diagnosing doctor and the honesty of the parents explaining their child's life at home. For those who say, "Oh Bailey Banks had PDD-NOS, that's not autism," here are a few definitions to review. Go ahead and submit a PDD-NOS code to your insurance company. See if they tell you, "That's not autism, so we'll cover the charges."  What was your diagnosis experience like?

FROM AUTISM SOCIETY OF AMERICA

What is the difference between autism and PDD?


The term "PDD" is widely used by professionals to refer to children with autism and related disorders; however, there is a great deal of disagreement and confusion among professionals concerning the PDD label. Diagnosis of PDD, including autism or any other developmental disability, is based upon the Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV) (American Psychiatric Association, Washington DC, 1994), and is the main diagnostic reference of mental health professionals in the United States.

According to the DSM-IV, the term "PDD" is not a specific diagnosis, but an umbrella term under which the specific diagnoses are defined.

http://www.autism-society.org/site/PageServer?pagename=about_FAQ

FROM NIMH:

Autism Spectrum Disorders (Pervasive Developmental Disorders)

What are Autism Spectrum Disorders?

Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. These disorders are usually first diagnosed in early childhood and range from a severe form, called autistic disorder, through pervasive development disorder not otherwise specified (PDD-NOS), to a much milder form, Asperger syndrome. They also include two rare disorders, Rett syndrome and childhood disintegrative disorder.
http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml

FROM YALE:

Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.

It should be emphasized that this ''subthreshold'' category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS probably come to professional attention rather later than is the case with autistic children, and that intellectual deficits are less common.

http://www.med.yale.edu/chldstdy/autism/pddnos.html

Kim Stagliano is Managing Editor of Age of Autism.

Comments

donna

Hi, It is July 2009, and I just read about John Erb being arrested. How did all that end?

Thank you

MinorityView

It would also be valuable to start collecting old medical books: physician's desk reference, home medical guides, etc.

I don't think they'll be able to cover their tracks. Too much of this info is in print in too many places.

Dan Fergo

fyi Sakura and everyone,

You will probably find some success in getting archived (old versions) of some web pages using this link;
http://www.archive.org/web/web.php

Simply put in the url, such as
http://www.vaccinesafety.edu/thi-table.htm

and it should yield something like;
http://web.archive.org/web/*/http://www.vaccinesafety.edu/thi-table.htm">http://www.vaccinesafety.edu/thi-table.htm">http://web.archive.org/web/*/http://www.vaccinesafety.edu/thi-table.htm

Hope that helps in your research,
Dan

Sakura

Taximom 5, it would be great if we could get screenshots of CDC and pharma websites to see how things have slowly changed under the radar over the course of the last few years.

The other website that I'd love to have previous screenshots of is the Thimerosal Table. http://www.vaccinesafety.edu/thi-table.htm

It's filled with zero's and "traces" now, but what did it look like before. I'd love to be able to have the former versions of it to show to people who say "but they took mercury out of vaccines!!", to retort back to them "yeah, well it doesn't help all of the kids that were vaccinated back in the day!!"

Twyla

I've heard some parents say that "PDD" stands for "Physician Didn't Decide". As Kim said, sometimes the doctor wants to soften the autism blow, and, as others have said, sometimes the child is still very young and the doctor wants to wait and see.

It is important to note that the neurologist in this case Dr, Ivan Lopez said that the reason why he chose "PDD" rather than "autism" is because, according to the court's ruling: "Dr. Lopez distinguishes autism as a more generalized condition without a known etiology, and contrasted it to Bailey’s condition, which he says is clearly attributable to demyelination based on neuroimaging evidence."..."Speaking more directly, Dr. Lopez stated that 'Bailey does not have autism because he has a reason for his deficits.'"

This definition works really well for those who don't want vaccines to be identified as a cause for autism, because by definition as soon as you discover a cause that means the condition is no longer called autism.

But the special master in Bailey's case did not buy this. He said that the diagnosis of "PDD, which is the condition both parties acknowledge that Bailey currently experiences" was "merely descriptive, not etiological".

And of course the special master is correct; the DMS-IV diagnotic manual lists only behaviors, not causes/etiology.

Mom23

Well, I've got a different story for you! DS was never diagnosed. I took him to the dev. ped. at 6 1/2, three months after starting the GFCF diet and the *#&$# dr. told me that there was nothing wrong with my kid and I should consider going on anti-depressants. Ummm... walking around in circles, chewing on toys, eating three foods, and itching your tush constanting is 'nothing wrong'? But, I'm grateful that the biomedical interventions have been nothing short of amazing. In hindsight, I would say .... PDD-NOS!

Taximom 5

Richard, I am fascinated by what you wrote: "Very smart to post the definitions here before the government tries to redefine PDD on their websites to conceal the truth.
Sometimes I feel like Mulder and Scully,fighting the government at every turn to expose the truth."

I went to Merck's website, where, 4 years ago, they claimed that one MMR conferred a lifetime of immunity for 95% of those receiving it (so WHY give 2 shots????).

I notice that their website no longer says this....I'm glad that I'm not the only one noticing that the opposition is desperately covering their tracks.

Lisa

Lisa,
I agree with you. I believe there are few forms of autism, not many subtypes. One that you are born with (classic autism), autism caused by another condition (i.e. Fragile X), and the vaccine injured group of kids who have autism (metal toxicity, oxidative stress, etc). I was at an autism meeting last night and met a mom who said her child has never spoken a word, and never made any forward progress. She has tried everything...diet, supps, B12 shots, chelation, HBOT, and is at the point of giving up. It was truly sad, because many of us in the room had kids who were recovering with intervention. This mom most likely had a child with classic autism. However, she did say that ABA was beginning to help some. I cried with her...

Lisa

actually, I was surprised years ago to learn that PDD-NOS does NOT mean "mild" autism (which I had assumed, since my son has a PDD-NOS dx and is mild). In fact, it can mean "very severe indeed, but with symptoms that don't qualify for a specific PDD."

the diagnostic criteria are really pretty squirrely. For instance - anyone have a child with a "non-verbal learning disorder?" How about a dual ADHD/Aspergers dx, or an autism/OCD diagnosis?

Lisa

Lisa

This reminds me of before insurance companies accepted the "autism" diagnosis and we had some really interesting diagnostic codes used to get treatments covered. My favorite: encephalopathy of unknown origin.

Jack

jruch,

I think you hit on something pretty important; that there are many types of ASD. What makes kids different from a biomedical treatment point of view isn't the label Ausitm, PDD-NOS, Asperger's, Hyperlexic, ADHD, but rather what is the cause.

For some kids it may be mito. damage due to heavy metal or pesticide toxicity. For other it may start and end with inflammation due to persistent viral infection. For others it is possibly something else or a combination of the above two. Children damaged to more or lesser degrees by any of these pathways may have any of the above different labels, but they are really more alike based on the nature of their injury than their label. And that's how we should start refering to it.

Once we can figure out the original cause of the damage we can call it what it is and work towards treating it. And people are doing some great research towards that end and that's where I'd love to see the research money going: diagnostic testing to determine the nature of the medical issues behind the autism. With the appropriately targeted interventions we can start seeing sucess rates rise above the 50% that gets reported for a lot of things and perhaps fewer parents will give up.

Libby

Around these parts we call PDD "Pediatrician Denial Disorder"

Mom to Isabella
PDD-NOS and very much ASD

Richard

Very smart to post the definitions here before the government tries to redefine PDD on their websites to conceal the truth.
Sometimes I feel like Mulder and Scully,fighting the government at every turn to expose the truth.

jruch

Thanks for putting these definitions together Kim.

I remember trying to figure this out in the early days. PDD-NOS was never announced as autism. It was more of a "lets wait and see what happens" diagnosis in the absence of speech at a young age. Correct me if I'm wrong, but I think PDD-NOS can be assigned even if the criteria for autism is fully met, but the child is considered too young to assign the label. Is there a minimum age for applying the autism label that arrives too far after the first MMR vaccination to create appropriate data? ie – you get the shot before 15months, but the you are not eligible for the diagnosis until 24 months?

It seems that getting an autism diagnosis later should retroactively negate the earlier PDD-NOS diagnosis.

Splitting hairs could be detrimental to making progress in understanding the spectrum. Suppose that each autism symptom, or a few small groupings of symptoms, have unique separate discrete causes. Suppose that eye contact preferences, social inclinations and cognitive biases are highly genetic and help define susceptible groups, but severe language difficulties, severe cognitive impairment, hyper/hypo-sensitivity, stimming, behavior issues, gut issues, etc are the result of single or multiple instances of inflammation, environmental exposure, or other developmental injury? Why does autism have to be the result of a single cause or event?

Kathy Blanco

Name Schnames, it all works out in the end for someone who in every aspect of the word, cannot communicate effectively, has no fear of dangererous situations, can be lost, has severe multi organ invovlement, an immune process, brain inflammation, seizures, self injurious, socially inappropriate etc etc. However you shake the term, it's devastating to the child and family. On many facets your life changes, and the child is in permanent limbo, if not addressing certain things that caused it in the first place. And for some of us, nothing comes about with the biomedical, the damage is done.

Teresa Conrick

Meg was diagnosed with PDD-NOS at age 3 by a well respected neurologist. She was and is severely "autistic". Same thing-different name under the umbrella. It's up to the diagnosing individual, who in our case was a well respected and well known neurologist, Dr. Peter Huttenlocher at the Univ of Chicago.

Gatogorra

My son's "Vaccine Court" case was tabled on a technicality. The technicality was that his diagnosis was PDD-NOS and, as of last year at least, the government attorneys were trying to argue that PDD-NOS isn't autism. I thought the same thing-- hey, will the govt. attorneys testify that our insurance company now has to *cover* this non-autism diagnosis?

ObjectiveAutismDad

My son was originally diagnosed with PDD-NOS when he was 2 1/2 to 3 years old. I think he just hadn't developed fully and didn't meet all of the classical autism criteria -- which he now does. Sometime around 1993 a Psychiatrist we were seeing told us not to use that diagnosis (because insurance generally doesn't cover it) and he coded everything with static encephalopathy. This is one of the reasons I choose to remain anonymous.

Amy in Idaho

We received ASD diagnosis from a developmental pediatrician (5 month wait-list for that appointment, thank you very much). After basically doing all of the assessment for them, they came up with ASD. Which is fine with me because having the ASD diagnosis actually gets many doors open for us in regards to services etc.

As my child develops more language, skills etc., I'm actually a little afraid that "the experts" will change the diagnosis in such a way that access to still needed services will become difficult. Just think about how that IEP meeting would go.... "he's not autistic - he no longer needs an aide or any accomodations"..."uh, he's better but he's not there yet"..."Nope, because of all of our efforts (cough, cough), he can navigate school independently - his diagnosis says so!"

Lisa

No doubt that this is hairsplitting on the part of the vaccine court and many others... and just incredibly frustrating, since it adds to the confusion and the alphabet soup. see my latest (www.autism.about.com).

Lisa

Anonymous for the sake of my friend

I remember when my son was being evaluated after two huge regression (once within two weeks of being given MMR, DTaP and Hib on the same day after being on antibiotics several times in the previouse few months) and then again four months later (just after being given the Chickenpox vaccine and his digestion compeletely falling apart), we went to see a top neurologist who wanted to give us a PDD diagnosis "because he was so young" (28 months at the time), but my husband has a neice who has autism, so we knew what it was like (our experience of the freight train was fast and furious because of this!).. and specifically pushed for a full blown autism diagnosis for the sake of service (and believe me, his has full blown autism)...so, this is all just semantics!

Later on after diagnosing my husband's hairdresser daughter while we were getting hair cuts based on what she was saying about her daughter, she went and got a PDD diagnosis... she came back to us, trying to figure it all out.. ultimately, she said something along the lines of autism/ PDD... it all seems the same to me, but I think they give you the PDD diagnosis so that you think it is not so bad... it just allows the parents some Parental Denial Disorder time to get adjusted.

Alison Davis

All three of my sons were diagnosed within a little over a year. All three were originally diagnosed with Autism. Period. Since biomedical interventions were begun in 2007, the eldest has been written as having "Aspergers Syndrome" by his school at a recent re-evaluation. The middle son has been evaluated as "PDD-NOS" by his specialist (is it possible to go from "Autism" to "PDD-NOS"?). And the youngest son has gone from having "moderate to severe autism" to now having "mild to moderate autism".

cj

Kim,

Similiar thing happen with our ped. and I was not aware until I got copies for vaccine court. On my son whose symptons were lesser than my daughter's had PDD written on his chart prior to receiving the diagnosis. On my daughters whose symptons are more severe than my sons didn't have Autism written down until after the diagnosis.

Also, I self-referred my daughter for her evaluation at 20 months. This is something that I am always curious about. How many of our kids were referred for evaluation by their parents? For us it was I who referred my daughter and enrolled her at a study through UCONN and my son was referred by Birth-To-Three.

kathleen

When our son was received his diagnoses...one of which was PDD. I remember my heart sinking when she added PDD to the list. She obviously saw this on my face because she immediately began reassuring me that PDD was not on the spectrum and that he would never be diagnosed on the spectrum. We are so thankful, we are blessed with his progress.

Natasa

Sorry, meant to say that the diagnosis of PDD and PDD-NOS does not exist in MANY European countries. Not sure how many, and the number is irrelevant.

My point was that if a child was diagnosed with PDD-NOS by someone in USA, that same child would often have to be diagnosed with Autism Spectrum Disorder by the same person if the diagnosis was being made outside USA.

Stagmom

I used to say, "PDD-NOS means 'we have no idea why your kids can't speak and are so different but we have to bill your insurance company something so we get paid for our time. Now go home and figure out what to do yourself.'"

Natasa

PDD and/or PDD-NOS diagnosis do not exist in most European countries.

So autism is either diagnosed as "Autism", or as "Autism Spectrum Disorder".

If you do not meet sufficient criteria for Autism, but still display some, you get diagnosis of Autism Spectrum Disorder.

Clear and Simple. The A word is never hidden.

Pamela

Kim, as you have shown here the GOVERNMENT is very specific that PDD is autism. In the examples you have given, the NIMH (National Institute of Mental Health) is the most direct in defining PDD as autism by listing it in the title alongside the word autism.

This is one very specific reason that I used the NIMH definition of autism link on my blog, The Educated Parent. I found that their description of autism was far more comprehensive than most and I liked that they acknowledged right up front, in the title, that PDD is Autism.


"FROM NIMH:

Autism Spectrum Disorders (Pervasive Developmental Disorders)

What are Autism Spectrum Disorders?

Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others."

Stagmom

We got "global developmental delay" at CHOP. Meanwhile, my ped had written "autism?" on Mia's chart (unbeknownst to me until I got copies of her records a couple of years later when we moved.

When Mia and Gianna were diagnosed in the practice of the Vaccine Defendant Witness extraordinaire Max Wiznitzer, the process was pathetic. We got the DSM IV check list (and they gave us the scoring key too.) I could have made the girls one brick shy of typical or Raingirls if I'd wanted to. They got a cursory neuro exam. A half hour chat with Mark and me. And a diagnosis. Even in my newbie state - I know this was a terrible diagnosis - at CHOP Mia was seen by an OT, a PT a speech therapist and a behavioral ped for a FULL review. It took days, not an hour. I called the doc in Cleveland on their thin process. She knew. She admitted their diagnosing was sub-par. And I know it hasn't changed in 10 years.

Barbie Hines

My son's diagnosis is PDD-NOS. He is nonverbal, etc. at seven. He was diagnosed by a child psychologist (Serena Weider-Stanley Greenspans business partner of sorts)...someone who really knows autism. At the time he was two. When I asked about the PDD vs. autism diagnosis she explained that she felt he was too young to know how affected he would be...so PDD-NOS would be the best diagnosis until he was older...now, he would receive a severe diagnosis...however, who has the time, desire or the money after 5 years of autism to take him back for an updated diagnosis...PDD-NOS is autism.

You could break your leg in a car accident, or you could get a scratch in a car accident...either way, you have still been in a car accident.

cj

My son's first diagnosis was Global Developmental Delay with Autistic Features. Then it was PDD. Then it was PDD-NOS. Okay even I was confused. Now it's PDD-NOS Resolved.

My daughter's first diagnosis was Autistic Disorder. Her second one was PDD-NOS.

After 3 years of being engrossed in this, my husband and I decided to ignore the official diagnosis' and now when asked about my daughter I say she has moderate Autism and my son's PDD has resolved and yes it can happen you are looking at proof!

PhillyLisa

When my daughter was three, she had a diagnosis of PDD-NOS. Last year,the diagnosis was changed to high functioning autism. Did she just suddenly get autism at age eight? Umm, I don't think so! Same kid, same issues, different name. Damn, I should have filed a claim before they changed the diagnosis. We might have won, because as we all know now, vaccines only cause PDD, not autism.

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