Aspies For Freedom

Is there any commonality in the way PDD-NOS patients manifest, which would lead one to suggest they are a distinct group, separate from Asperger's patients?

I know PDD-NOS is where you fulfill some of the criteria for Asperger's (let's limit this to just the HFA part of the spectrum), but not all of it.

But then, what I see far too often on AFF is people saying they think they have Asperger's (or have been diagnosed with it), but then going on to say they may have PDD-NOS or something else because they are "too different from the stereotypical Aspie mainstream, with all their Math skills and rational, stable way of thinking."

Really... is being an atypical Aspie grounds to suggest you are not Aspergian after all, but you have PDD-NOS or something else instead?

Talk about "exclusionary."

I did not have any language delay, so far as I know.  But I do have some "cognitive difficulties," or at least I think that's what they are.  What kind of cognitive difficulties would we be looking for in someone who has PDD-NOS rather than AS..?

Lemme know, thanks

Well, people with "HFA" generally had some speech delays whereas "Aspies" generally didn't. "HFA" and "Asperger's" are not exactly the same although they are often lumped in together. I think PDD_NOS isn't a very good descriptor because if it relies on things such as clinically significant delay in speech, it overlaps too much with "HFA".

With cognitive deficits, are we talking more about a cluster of specific learning disabilities, or... to put it more bluntly... more like a low IQ?

My IQ was found to be 99 at the age of 15, although I
have dyscalculia, awful short term memory, trouble with abstract/symbolic thinking, and problems with sequential logic (or anything requiring a lot of steps followed in a specific order.)  I have never been told I had any kind of learning disability, however, which is shocking (to me.)  Generally people tend to think I am intelligent, gifted in a couple small areas in fact.

I mean, what are we talking about with cognitive deficits?  Does my above paragraph fit...?  I still do not understand.

[quote=Breeze]
In loose terms, a person with a cognitive disability has greater difficulty with one or more types of mental tasks than the average person.  Cognitive disabilities often have a basis in the structure or chemistry of the brain.

A person with profound cognitive disabilities will need assistance with nearly every aspect of daily living. Someone with a minor learning disability may be able to function adequately despite the disability, perhaps even to the extent that the disability is never discovered or diagnosed.

Clinical diagnoses include autism, Down Syndrome, traumatic brain injury (TBI), and even dementia. Less severe cognitive conditions include attention deficit disorder (ADD), dyslexia (difficulty reading),dyscalculia (difficulty with math), and learning disabilities in general.

Cognitive disabilities include deficits or difficulties with:

Memory
Problem-solving
Attention
Reading comprehension
Math comprehension
Visual comprehension

Okay, well then in that case, I need to know why they settled on the PDD-NOS diagnosis for your son, rather than the AS diagnosis.

I apologize, my posting style is to ask lots of questions until I reach a satisfactory conclusion.  Or a logical conclusion, so to speak.

Earthmonkey, you tell me, then.  In your words, what is your opinion  of the "typical Asperger profile" ?

And if you include gifted IQ, early cognitive development, and math strengths, I'm going to throw up my hands and give up...

People often ignore the important developmental differences between autism and AS. If you look at AS and autism from the developmental level, it's almost as if they are opposites.

HFA's are supposed to have language development delay. LFA's may have some kind of regression and might actually stop speaking at a young age and might then never speak again.

I think a qualification for AS is no speech delay.

Apraxia was my son's diagnosis, though he never had speech. At age 3 he made two sounds.  We had no way of knowing what the future might hold for him, though his comprehension seemed OK.  Then he taught himself to read and write.  As soon as he realized that those scribbles I was pointing to when we were reading MEANT something, he was unstoppable.  Hello HFA.  No, he is not "diagnosed" HFA, but for a mere $2000 he could be.

He makes all of his sounds now and is fully comprehensible to anyone if he isn't in a hurry. We hope that by adulthood only an expert will be able to tell how hard he has worked to talk.  I guess that is the big thing .... he WANTS to, and he works so hard. I suppose if he had not seen the point in working so hard he would be considered LFA, even though his intelligence would be the same.  

Anyway, as I understand it, Apraxia is a sequencing issue.  The word is in the brain, but the brain has difficulty getting the mouth and tongue muscles to do what they need to do in the correct order.  Matching the sound with the correct sequence of actions is difficult/impossible. That is what we were told, but it seems that brain imaging shows no differences between apraxic and non-apraxic children.  Whatev.

The dividing isn't exactly perfect, and it has been brought up that people who was earlier diagnosed with LFA could later be diagnosed as something "high-functioning".

I think that breeze's differentiation between the two terms is most accurate from a current diagnostic and labelling perspective.

But you might as well be telling parents that there is nothing the matter when you say PDD-NOS. If it is subclinical, why not just call it Borderline Aspergers or Borderline Autism and have done with it?

I'm again going to link to my post on the topic of What PDD-NOS officially means.  Then I will paste it (converted to UBB code from HTML, I hope) in case anyone's too lazy to click on it.    So everything from here on out is just my original post totally unmodified:

*******

I'm not generally into doing the nitty gritty details of medicalistic categories.  But I've ended up having to write things like this out (mostly from memory) so many times lately, that I thought I'd write it down in one place and get it over with.  Be aware that I do not agree with the official ways that autism is divided up.  When I write this, I'm reporting how something is used, I'm not agreeing with the usage.  When I talk about PDD-NOS (pervasive developmental disorder, not otherwise specified) being used "correctly" and "incorrectly" below, I mean "in accordance with official criteria" and "outside of accordance with official criteria".

A lot of people online say things like:

"PDD-NOS entails a language delay."

"PDD-NOS kids have a specific way of interacting socially that autism and Asperger kids don't."

"PDD-NOS is the intermediary between autism and Asperger's."

"PDD-NOS refers to mild autism."

"PDD-NOS refers to high-functioning autism."

"PDD-NOS refers to very low-functioning autism."

"PDD-NOS is more severe than Asperger's but less severe than autism."

"Kanner's Autism is the least varied in presentation, Asperger's and high-functioning autism the most, and PDD-NOS somewhere in the middle."

And so on and so forth.

As far as that autism spectrum severity wedge goes, with "Kanner's" autism at one end, "Asperger's" and "high functioning" autism at the other, and "PDD-NOS" in the middle, with "AS/HFA" being the "most varied presentation," I beg to differ in a number of areas, and would direct people both to this post (which seems to show PDD-NOS is the most varied of any autism category, just by its nature) and to my old post on what does "Kanner" actually mean?, because, to quote Inigo Montoya, "You keep using that word. I do not think it means, what you think it means."  In several respects.

Even though the official categories of autism and Asperger's can be indistinct, they are nowhere near so indistinct as the category of PDD-NOS.  This is because PDD-NOS, far from being a distinct thing, is meant for anyone who doesn't fit into a few narrower categories.  It's also frequently used outside of accordance with the actual criteria.

Here's how it's used in ways that the criteria don't even cover:

• A doctor sees an autistic person and says, "This person cannot be autistic, because he makes eye contact, or shows affection, or likes to socialize (even if in unusual ways), or seems aware people exist, or has a normal IQ."  In other words, the person does not fit the doctor's stereotype of autism even though they might meet official criteria for autism or Asperger.
  
  Roy Grinker describes his daughter's diagnosis in the nineties:
  
  
  Quote:
  [The psychiatrist] showed us the criteria for autism and related disorders, all classified under the heading of "PDD," and then drew our attention to PDD-NOS, Isabel's diagnosis.  But it seemed to me that Isabel did meet the criteria for autism.  She couldn't make friends or communicate with words or gestures.  She used repetitive speech and was preoccupied with lining things up in a row.  So why didn't he say she was autistic?
  
  He explained that while it was true that Isabel had most of the features of autism, she had them to a lesser degree than many of the other children he had seen in his years of practice as a child psychiatrist, and she showed no evidence of being mentally *** (though the absence of mental retardation never rules out an autism diagnosis).  In retrospect, I think he may have been afraid to give us a devastating diagnosis like autism when Isabel was so young and in some ways functioning at a higher level than the children he had seen.  As a child psychiatrist from Fairfield County, Connecticut, told me recently:  "Things are different now.  Even in the mid-90s, autism used to be like the 'c' word [cancer], and I didn't use it if I didn't have to.  So it was only the severe cases that got an autism diagnosis from me.  The others got 'PDD-NOS'."
  
  In fact, I remember that, despite knowing little about autism, I felt happy that Isabel had PDD-NOS instead of autism.  I didn't realize then that, over time, PDD-NOS would prove to be an ambiguous and cumbersome diagnosis, that it would morph into "autism" or "autism spectrum disorder," and that I'd rarely use the term PDD again.  Today, Isabel is simply a child with "autism".

  
  (from Unstrange Minds:  Remapping the World of Autism by Roy Grinker.)
  

• A doctor sees an autistic person and says, "This person meets the criteria for autism, but autism means hopeless, and I don't want to label this person hopeless," or "This person meets the criteria for autism or Asperger's, but will get better services under PDD-NOS."  This was part of the rationale for diagnosing me on paper as PDD-NOS in the nineties, while telling my parents orally that I was autistic.
  
• A doctor meets an autistic teenager or adult with an ambiguous early history, and proceeds to diagnose PDD-NOS as a way of saying "I don't have all the data."  (For instance, I was never told until I was practically an adult that I lost some speech early on, and I have no idea if my doctors had been told that either.  A middle-aged friend of mine has a PDD-NOS diagnosis because they don't know her early history despite the fact that she seems to fit the autism criteria.)
  
• A doctor has an aversion to "labeling" people and only gives them -NOS diagnoses because they "seem less like a label" somehow.  (I had a psychologist like this.)
  
• A doctor sees that a person has another diagnosis and doesn't want to tease out what's autistic and what's from this other diagnosis.  (I've met clearly-autistic people with cerebral palsy who got diagnosed as PDD-NOS because of this, even though they met criteria for autism or Asperger's.  This can also happen to people with Down's syndrome.)
  

Okay, so that's just the number of ways that are not exactly in keeping with the real criteria.  Some of them used to be used more frequently than they are now, but many are still used this way today.  Those are not actually in accordance with the criteria, they're in accordance with the doctors' wishes or prejudices for various reasons.

Even what meets the official criteria, though, is still pretty varied.  Here's the official criteria.  I'm going to include both DSM-IV and DSM-IV-TR criteria since that changeover is fairly recent (2000) and there are still kids diagnosed prior to then who have this diagnosis, and also ICD-10:

DSM-IV criteria for PDD-NOS:

DSM-IV-TR criteria for PDD-NOS:

ICD-10 criteria for atypical autism:

Some examples of how a person could actually meet these criteria:

• Fitting the criteria for Asperger's, and not the criteria for autism, with the exception that the person had delayed language early in life.
  
• Fitting the criteria for Asperger's, and not the criteria for autism, with the exception that the person has a lower IQ than the cutoff for Asperger's.
  
• Fitting the criteria for Asperger's, and not the criteria for autism, with the exception that the person had a delay in self-help skills early in life.
  
• (For the DSM-IV, but not the DSM-IV-TR.)  Meeting the social criteria of autism alone, without the other criteria.
  
• (For the DSM-IV, but not the DSM-IV-TR.)  Meeting the language criteria of autism alone, without the other criteria.
  
• (For the DSM-IV, but not the DSM-IV-TR.)  Meeting the repetitive behavior criteria of autism alone, without the other criteria.
  
• Meeting the social and language criteria for autism, but not meeting the repetitive behavior criteria.  (Meeting social and repetitive behavior without language is mostly covered by Asperger's.)
  
• Having "a few autistic traits".
  
• Seeming autistic, but having another condition going on (such as cerebral palsy or intellectual disability) that makes it hard for a person to do enough things to fulfill the autism criteria.
  
• Meeting the criteria for some other kind of autism, but not quite enough (in number) of the criteria.
  
• Meeting the criteria solidly in one category, but ambiguously in one or more of the other categories.
  
• Meeting the criteria, but ambiguously in all categories.
  
• Meeting the criteria, but meeting them (or some of them) later than the cutoffs for other things.
  

Every time I see people making broad generalizations about what "PDD-NOS" means, I wonder if they know exactly how varied the people are that the word can be officially applied to.  PDD-NOS doesn't necessarily say anything about "severity" (as most people conceptualize severity).  It doesn't necessarily say anything about language development.  It doesn't necessarily say anything about anything, given the amount of combinations of things it can be used for, legitimately or otherwise, and it's wrong to make generalizations about "the unique manner in which PDD-NOS kids socialize as opposed to other kids on the spectrum" or "the severity of PDD-NOS as compared to Asperger and autism" etc.  Those are meaningless statements.