Do you believe PDD should be a separate diagnosis?

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Those who are being diagnosed with Aspergers comprise a very diverse population. I have recently attended social gatherings for Aspergers and they have attracted all kinds of people. But what worried me is that there was a clear presence of those who clearly desired social acceptance, but who are socially unaware and tended to be very talkative versus those who were more socially reclusive and reserved but sophisticated. There was one girl, who I believe had severe learning disabilities in addition to social problems (probably Turner Syndrome) and she was sitting with a group of guys who appeared to be socially awkward but sophisticated and more socially savvy than she. She kept saying silly things and embarrassing herself. and she did not realize guys were laughing at her until one of them was very rude to her.

Its true that most people lie somewhere on the spectrum and people may have traits from either side of the spectrum and there are different situational factors contributing to this, but I feel it is an injustice to lump two very different groups together.

I'm more a fan of ASD taking all of them in. At this point, it seems a diagnosis is so subjective depending on where you go you might get a number of different disorders. My daughter was given a diagnosis of PDD-NOS, I don't know how more vague and unhelpful that could be. They acted very tentative about anything autistic, fearing to label someone so young with what they thought was a crippling diagnosis that would follow her around the rest of her life.

Sometimes I get the sense people with AS don't want to be lumped in with those that seem more disabled then themselves. I'd say it's the Einstein syndrome, look how often he is quoted to have had AS as a comparable. I know this is a simplification of a complex issue, but I'd rather see an official diagnosis of ASD, I think treatment is specific for the individual anyway, an AS label doesn't give you a different standard treatment automatically. Treatment is really the only reason for a diagnosis, not how we feel about who we are lumped in with.

When describing PDD-NOS, do you get to pick and choose which traits are not present? As a self assessment I think I fit the criteria for that because my routines and special interests are not clinically significant enough to cause impairment. Isn't PDD-NOS on the autistic spectrum? Doesn't that mean it's autism? It seems the situation the OP described included both social and non social autistics, but the common thing between them was difficulty with social interaction. Hope I'm making sense.

PDD-NOS is just what it appears to be. If people have symptoms that could only be described by autism, but they don't fit Kanner's or AS, then they are PDD-NOS.

I was referring more to placement than to actual diagnosis per se. Personally I don't mind being associated with someone of a different level of intelligence or cognitive ability but it would be a disaster to place people with such diverse needs in the same classroom, or social skills group more so for the person who is of a "lesser ability" who can easily be manipulated, taken advantage of and abused. I don't mind being "lumped in" with that girl, but I fear for her safety. Luckily for her, the guys she was with just hurt her feelings. They expressed no interest in sexual relations with her as she had requested, but they could easily have done so. They could have easily taken her home and taken advantage of her if they had wanted to. People of a lower cognitive ability or intelligence require certain protection and it is an injustice to put them in harms way.

I am sorry if I offended you by suggesting that people diagnosed with PDD are of a lower intellectual or cognitive ability. Perhaps we need a new term. I am not suggesting that your daughter is not intelligent or cognitive ability because she . Children under five are usually diagnosed with PDD-NOS because it is usually too early to tell how someone will turn at such a young age. They also cannot accurately assess a child's intelligence at that age. They will be able to be more specific regarding your daughter's diagnosis at an older age. I was diagnosed with PDD-NOS and ADHD as a four year old as I had significant motor delays and was beginning to exhibit certain social skills deficits. As a ten year old, a school psychologist suggested that I might have Asperger Syndrome, which was very new at the time. My parents found this very offensive, as they had no understanding of what it was. They preferred to have me diagnosed as NLD because they felt it would carry less stigma and believed if they had me diagnosed with a "learning disability," I could receive more accomodations. I fit the main criteria for NLD, (social skills deficits, poor visual/spatial orientation, motor skills delays), but I do not share the learning problems commonly associated with NLD. People with NLD have typically have difficulty with conceptual mathematics and phyiscs, difficulty visualizing and reading maps, charts, and graphs; they have difficulty seeing the deeper meaning in something and focus on only the literal aspects. I also lack the extrodinary verbal skills commonly associated with NLD. I have had no real problems with speech or phonetic ability, but my main strengths lie in problem solving and analytical skills that typically characterize Asperger Syndrome.

What PDDNOS officially means

That's a link to a very comprehensive post I once made about what it does and doesn't officially mean to say someone has PDDNOS. I'd strongly suggest anyone commenting on this thread read it. 

Here are the examples I gave about how someone could really (as opposed to the many myths about the diagnosis) fit the criteria. 

The main 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.

You will notice that absolutely nowhere in this list are the sort of differences described by the original poster. There's a reason for that. You'll also notice that PDDNOS is easily the most diverse category of all of the autism-related diagnoses. There's a reason for that too. 

My (physical) doctor once explained something really important to me that too few people grasp about categories ending in NOS.  Basically, medicine only knows a tiny number of the conditions that actually exist. Take neuromuscular diseases for example. We know about muscular dystrophy, ALS, and a few others -- few compared to the vast number of diseases that exist. So let's say just for simplicity's sake that MD and ALS were the only two types of neuromuscular disease that had a name among hundreds of others.  Then there would be a category called "neuromuscular disease NOS". Neuromuscular disease NOS is not a neuromuscular disease at all. All it means is "this is one of hundreds of diseases that are neuromuscular but not ALS or MD".  This might include spinal muscular atrophy, mitochondrial diseases, myasthenia gravis, and a whole lot of other diseases, many of which act totally differently on the body. But you could never, ever say that "neuromuscular disease NOS" was a disease in itself with specific characteristics that differentiate it from ALS and the muscular dystrophies, and that this specific condition needed to keep its name so that its traits wouldn't be confused with MD or ALS. 

It makes just as little sense to treat PDDNOS the same way, or (even worse) to use it to deal with the fact that individual people with a diagnosis of Asperger's differ wildly from each other. (That would be like using "neuromuscular disease NOS" to handle the diversity inherent in the different muscular dystrophies.)

But there is a certain approach to differences among autistic people that drives me up the wall. The reasoning seems to run like this:

1. The person notices that among autistic people (using autistic in the broad sense) there are a huge variety of ways that autistic traits play out in each individual person. (They may also notice personality differences such as introversion/extroversion and differences in traits that have nothing to do with autism.)

2. The person notices that there are several words used to describe what are thought to be different types or severities of autism. This may include two or more of: autistic disorder, Asperger's, CDD, PDDNOS, Kanner's, HFA, MFA, LFA, mild, moderate, severe. 

3. The person decides what differences between autistic people are most important to them. 

4. The person assigns each of those differences one of the above official labels regardless of the original meaning(s) of each label. 

The worst form of this is when doctors do it. "He makes eye contact but meets all criteria for autistic disorder?  Must have Asoerger's!"  Because doctors are given more authority than they always deserve, people are prone to believe them even when they pull things like this out their rectum.

And that's one of the reasons you can get parents who swear that children with PDDNOS smile more, autistic people who believe PDDNOS exists solely for a "moderate" kind of autism in between Kanner's and Asperger's, people who think those dxed with autism must be unable to communicate at all, people who think that HFAs are introverts and LFAs are extroverts who can't express themselves or the complete opposite, etc.  This can get to the point where five different people focus on one single trait but each swears that it exists in a different one of five official categories. I've even heard things like "[Name removed] is what some autistic adults refer to as a Kanner-autistic, which means that he is recognisable immediately by most people as autistic, whereas high-functioning autistics often appear normal or just mildly eccentric to the casual observer and low-functioning autistics simply seem to be ret*d."  Direct quote. 

(If you're interested in Kanner's actual patients this is a post I wrote to clear up some major misconceptions by going back to the original source. This post was praised by the then-president of the American Psychological Society so I must have done something right.)

Anyway. What people who do this don't realize is that their task is both arbitrary and futile. There are probably hundreds of important variations among autistic people. There are not hundreds of names. And assigning only a few of those variations names suggests that only a few are important. It also ensures that each person who decides to take this route will do it differently, leading to a sea of utterly useless and contradictory categories. 

If you look at the actual patterns autistic people fall into, you'll definitely see some major ways they cluster, but you'll also see many areas where the difference between one "kind" or another blends so smoothly in between that putting a line in the middle can ruin it. You will, if you look right, see a web of patterns that is so complex it requires many dimensions to even begin to approximate it. Is this really a job for such a tiny number of categories that already have meanings of their own?  

Deciding that PDDNOS is valuable in order to describe a few casually observed differences at a support group seems more destructive than useful to me. Deciding that if we just keep three different names for autism then grossly different people will be prevented from being put in classrooms together... seriously?  Because it won't work. 

Another thing is that the current categories don't reflect the true differences or similarities among autistic people. Keeping them will only perpetuate a system where people nothing like each other are lumped together and people almost identical will be split apart. 

I always use people like me as the perfect example. Not only are we a minority among autistic people in general as if that's not isolating enough. But we also end up in all the different categories separated from each other. And each of us in each category will find people more unlike us than like us. This is not a system I like living in and I see it with nearly all of the true categories within autism. (True means it's about experience, not behavior.)

If we call it all autism then yes very different people will be put together. But look at it this way:  This is already true. Right now the state of affairs is that very different people are lumped together AND very similar people are split apart into different categories. Putting it all together won't change the first half of that sentence but it will change the second half. Which is better?  Having both of those bad things true or just one of them?  Keeping the different categories doesn't even remotely begin to solve the first problem (except in the minds of people who don't notice the true degree of diversity among us yet), and it prevents the solving of the second. Seems like an easy choice.  

As for classrooms, aside from this method of keeping people apart not working. I don't approve generally of separate classrooms by diagnosis alone. And keeping vulnerable people separate from bullies will never ever work that way because every category of person on earth contains both bullies and vulnerable people. So those issues need to be solved some other way without trying to rewrite the autism spectrum to do it. 

I do think keeping PDDNOS around would truly solve one problem though -- what to do with people who don't quite fit the criteria. But honestly I think the better approach would be to stop using such rigid absolute criteria in the first place and then would-be PDDNOS people would just be autistic. 

Heh, anbuend, you should totally keep that around and just copy-paste it when people start asking questions about PDD-NOS...

The problem with trying to categorize by ability levels is that there isn't just one ability that you can rank people by. You're talking about people who are socially savvy versus not--okay. What about people who are good at academics, versus not good at academics? How about people who are good at doing stuff on their own and don't need a lot of prompting, versus people who need someone to help them stay on track all the time? What about people who need help communicating, versus people who can pretty much say what they want, when they want? What about kids who are rule-following, quiet types, versus kids who instinctively rebel against everything? If you use every relevant difference to try to divide people into classes, you're going to end up with a lot of classes with one person in each one! Seems like the better approach is to design a class that can give individualized education to each student--which is the point of special ed, though it's a purpose special ed doesn't always successfully fulfill.

I do think we need to keep PDD-NOS around, yeah. The new ASD criteria aren't global enough to cover all PDD-NOS cases; and we're going to end up with some of the more atypical cases floating around in the ether somewhere without a proper label. Of course, most doctors will simply diagnose ASD anyway; but they shouldn't have to do that--there should be a "miscellaneous" category for stuff that doesn't really fit but is obviously related.

First, I think that there is a confusion between PDD and PDD/NOS in this thread ("PDD" and "ASD" means almost the same thing; PDD/NOs is a subtype of PDD/ASD).

About the distinction that you are making between "those who clearly desired social acceptance, but who are socially unaware and tended to be very talkative" vs. "those who were more socially reclusive and reserved but sophisticated", I don't understand exactingly what you mean by "sophisticated".

If you are talking about the distinction between "wants to be social but don't know how" vs. "know how to be social but don't wants", this is largely the Asperger's Syndrome vs. Schizoid Personality Disorder thing.

Were the guys Aspies and the girl pdd-nos or vice versa?

I believe the girl had Turner Syndrome, a X chromosome genetic disorder only found in girls which causes low intelligence. The guys were all intellectual and sophisticated Aspies who could easily taken advantage of her if they wanted to.

turners syndrome does not cause low intelligence i suggest you do some reaserch.
you maybe be thinking of another disorder such as williams syndrome or another syndrome


turners syndrome causes nonverbal learning disability , short stature and puberty related issues. read these articles for more info

http://en.wikipedia.org/wiki/Turner_syndrome
http://www.nldline.com/turner's_syndrome.htm

How does this relate to pdd-nos having a seperate diagnosis? Do you think the TS girl shouldn't have been allowed to attend the meeting?

The title of this thread is confusing. Like another member said, "PDD" and "ASD" are synonymous. How can there be separate diagnosis for PDD? Additionally, the initial post said that the observations were noticed at an event for AS? Then are you asking if there should be 2 types of AS? I have observed in my students, and family members, the opposite sides of the AS spectrum that you have mentioned. I have seen the reserved, more intellectual Aspies that prefer to limit social contact unless it involves sharing factual info. I have also seen the naive, unaware, aspies who seem to crave any contact with others, and do not notice that it is usually negative attention they are getting. It does seem like there is a big distinction between the two behavior groups, and I have seen different obstacles for each group, but there are definitely common threads between them. I think it is fair to say that everyone is an individual ,and that regardless of a diagnosis of ASD/AS, people will not all act the same. People have different experience, and will respond to social interaction if different ways. I still would like you to clarify what exactly you are asking though.

Sorry Ravenclawgurl. I didn't mean to suggest that people with Turner Syndrome were low IQ and socially naive and I'll do more research next time. I don't want to exclude people who are less savvy from Asperger Syndrome, in an ideal world we would include everyone. But I was suggesting this for her own good. She was desperate to get laid and one of those guys could easily have taken advantage of her. Luckily for her, they weren't interested in sex and just embarrassed her. Its hard to talk about this without crossing into un PC territory, but I worry for the safety of people who need more protection.

Perhaps this is the difference between the verbose AS (the type who wants to be social and talks non-stop) and the withdrawn HFA (the social reclusive type).

I wasn't offended at all, I was just talking about my own thoughts on ASD terms. Mostly, I think people get help for what their symptoms are, If people of greatly different abilities get lumped together, most of the time it's lack of resources for help in specific needs. I don't think specific names for ASD make a whole lot of difference in the treatment one recieves.