Do you believe PDD should be a separate diagnosis?

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TPE2
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03 Jan 2011, 7:29 am

Skinnyboy wrote:
Ariela wrote:
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.


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.


Humans think better if we have abstract and general categories - the motto "if you know a person with autism, you kown a person with autism" could be true, but it is largely useless; it helps to have general labels to identify different behaviors and different needs. Then, if different types of autistics have really qualitativly different needs, and, within this diversity, we found sub-groups of autistics who have similar needs within the subgroup, could be useful to gave a name to these subgroups.

Returning to the situation described in the OP, I think that the intention of the label "Aspeger's Syndrome" was exactly to identify the "social autistics", who try (and usually fail) to socialize (in contrast with the "classical" autistic, who ignores other people).

However, the diagnosis of AS sooner lost the meaning of "social adept autistic" to gain the meaning of "intelligent autistic".



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03 Jan 2011, 12:23 pm

TPE2 wrote:
Perhaps this is the difference between the verbose AS (the type who wants to be social and talks non-stop) and the withdrawn HFA (the social reclusive type).


Aaaack. No. This is what I was describing in my post (those really annoying four steps people take). AS is just autism without delays in speech, cognition, self-help skills, or curiosity in early childhood (but in practice usually just without delays in speech and with IQ above about 70ish). It has absolutely nothing to do with whether a person is introverted or extroverted. HFA isn't a real diagnostic term, but what it usually means is a person diagnosable with autism (usually with a language delay/regresion or echolalia, pronoun reversal, and/or idiosyncratic language in early childhood) who has certain skills (sometimes it's IQ, sometimes it's different things altogether, there's no set definition).

Absolutely nothing about a difference between "AS" or "HFA" indicates whether a person is social or reserved. Nothing.

A person considered AS can be very social or very reserved or anywhere in between or flipping back and forth between the two. The exact same goes for a person considered HFA. (The exact same even goes for a person labeled LFA. Trust me on that, I've known a lot of people with that label and many are just as social as any stereotypical "aspie".) It is really a bad thing to start claiming that what differentiates people with these different diagnostic labels is how social they are. And believe me, I've seen it go both ways. Ever hear the one about how "aspies" and "HFA" are the ones who are introverted, but "LFA" are the ones who would be social they just are unable to move in ways that make them look social, and are even very socially skilled compared to "AS" and "HFA"? Ever hear the one about how "AS" people are introverted and never social, but "HFA" are the ones who are social? Now you've heard them, and it becomes obvious why it's a problem to just go around assigning personality traits to different autism labels as if it means anything real at all. It's really frustrating to have observed this isn't true and still hear the myths bandied about as if they mean something.

At any rate, I'm at the reserved end of things, a lot of which is because I overload easily. But I can be social. I have some very close friends, and sometimes we travel thousands of miles just to meet each other. And my diagnosis is autism. Not HFA, not LFA, just autism. (Although some doctors keep trying to tack "LF" and "severe" onto it, I try not to let them because I don't like functioning labels.) I once had a doctor explicitly tell me that there was nothing about me that could be considered AS. (I don't really agree with the differences, but I'm pretty solidly in "not AS" territory if you think of things that way.) So there you can see I'm a hole in the theory that people diagnosed with just regular autism can't be social. I don't know if that's enough to stop people from saying it, but it's just not a true thing and people shouldn't be saying it to begin with.

One reason it bugs me so much: When I was in the mental institution that I was diagnosed in, everyone was utterly convinced that there was nothing about me that was remotely social. They were convinced of this because I sat there and didn't visibly interact with anyone. They once even told me that if I were social, I would be approaching people. There have been times in my life where I could approach people, but that was not one of them. And apparently my face didn't show enough expression either. But whatever it was, everyone insisted that I wasn't social at all and wanted nothing to do with anyone. Except for the fact that sometimes I did. But people assumed that just because I was autistic, there was no way I could be social. And that limited my opportunities to be social. And when people honestly believe that "only aspies are social", then all other autistic people get short-changed if they want to be social but can't even approach people to show it. It also means that even if someone does approach people, it will be like it was with a friend of mine. She approached people all the time and did social things with them. But her teachers said that she didn't see people as anything but objects, that she couldn't be social because she was "very autistic". And yet she was very obviously social, it's just that nobody would believe it. That's the problem with stereotypes, they hurt real people.


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03 Jan 2011, 1:50 pm

Ariela wrote:
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.

What you might try next time (if it happens again) is going over to where she is and get involved in the conversation. Whatever happens, happens, though. There's not much you can do. You can try bringing it up confidentially to whomever is in charge of the meeting.



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03 Jan 2011, 9:58 pm

Ana
She does not come to Aspergers groups anymore and I was not necessarily referring to her per se. But I've noticed a pattern of people of very different levels showing up to groups that are designed as Aspergers groups and similar things could happen elsewhere.



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03 Jan 2011, 10:41 pm

So you are worried about this happening everywhere...at any Aspie meeting...

Maybe they lump everyone together because of attendance rates at these meetings? There might not be enough of any one group to compose a full meeting so they put everyone together.



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03 Jan 2011, 11:37 pm

Ana
These meetings attract a variety of people with different abilities. I don't want these meetings to exclude anyone but that is somewhat inevitable, for both groups.

Its funny that you mention the small numbers as a potential reason for lumping people of different abilities together. AANE is one of the biggest organizations for AS in the world. In the beginning, before anyone knew about AS, they primarily attracted higher level people. But now that AS is more well known, it attracts all kinds of people. I think that higher functioning people tend to be turned off by the presence of lower functioning people and the condescending nature of the staff and volunteers.



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04 Jan 2011, 11:05 am

Ariela wrote:
Ana
These meetings attract a variety of people with different abilities. I don't want these meetings to exclude anyone but that is somewhat inevitable, for both groups.

Maybe there should be some structure in the group? Like, splitting them up into two groups once they get there? Still, you can't dictate to people who they socialize with. If a high functioning Aspie, for whatever reason, doesn't want to associate with a lower functioing autistic, they are the ones who make the call and figure out what to do. You can't really police people in these situations. If the high functioing don't want to attend, for whatever reason, they don't have to. Same goes for the low functioning. I would resent it highly if someone made me go to a meeting I didn't want to attend.
Sometimes it helps to take a deep breath and leave these things up to the individuals involved unless you see something really dangerous or threatening, then you can jump in and intervene :)
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Its funny that you mention the small numbers as a potential reason for lumping people of different abilities together. AANE is one of the biggest organizations for AS in the world. In the beginning, before anyone knew about AS, they primarily attracted higher level people. But now that AS is more well known, it attracts all kinds of people. I think that higher functioning people tend to be turned off by the presence of lower functioning people and the condescending nature of the staff and volunteers.

Keep in mind not everyone will be attracted to these meetings. I was raised in an NT world and have never attended one autistic meeting or function in my entire life and I am sure there are many others like me.



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04 Jan 2011, 3:12 pm

Ana
"Maybe there should be some structure in the group? Like, splitting them up into two groups once they get there? Still, you can't dictate to people who they socialize with. If a high functioning Aspie, for whatever reason, doesn't want to associate with a lower functioing autistic, they are the ones who make the call and figure out what to do. You can't really police people in these situations. If the high functioing don't want to attend, for whatever reason, they don't have to. Same goes for the low functioning. I would resent it highly if someone made me go to a meeting I didn't want to attend."

There are a lot more factors than cognitive ability. There is level of intelligence, social maturity, social desires, overall sophistication, educational and professional level, other disabilities they might have. It would be impossible to divide everyone into clear, finite groups according to their abilities.

Personally I never liked the structure the staff provides. I find it very condescending. They do not engage us in intellectual conversations. It feels like elementary school all over again. My interests tend to be very mature, more so than for most NTs of my age group and I don't like playing the silly games that the staff cooked up.



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04 Jan 2011, 4:09 pm

I've been turned off by in-person autism groups myself, although it doesn't make me want to go around labeling other people to keep them away from me. Some of the problems I've encountered:

Lots of desperate heterosexual men. I and a lot of women I know have felt crowded at best in a lot of groups that are absolutely full of straight men who try to hit on anyone female regardless of whether that woman is asexual, lesbian, already in a monogamous relationship, or simply not looking for a date. And a lot of the time they won't take no for an answer, and then women stop coming to the groups and the men wonder why.

Lots of people who have a really easy time with almost every sort of daily living chore. This was one of my biggest headaches when I was attending a group at a time when I was starving and barely functional. I could describe the problem (when I could talk or type anyway), but I couldn't solve it. And whenever I described what I couldn't do, I'd get these incredulous remarks like "But that's easy...," or "Why don't you just... [insert something impossible for me]?" It made me want to bang my head on something and eventually I stopped attending. It wasn't worth losing all that energy from going there, only to be told how easy everything was that i found impossible. There was only one other person there, also a woman, who had similar problems, and they weren't always very nice to her either. She lived in a group home. We once tried to help each other work out how to use public transit, but we were shushed by the guys who found all that easy and saw our attempts to figure it out as pointless.

In most in-person autism settings I've seen a serious overweighting of the people who attend into a particular cognitive category. I don't know entirely how to describe it. It's like they're hyper-rational or something but it's more than that -- dryness and a particular kind of rigidity and a bunch of other things. Then someone like me enters into it. I'm not all that rational in the way I think and process information. I'm more of a sensory thinker than an idea thinker. And I'm more sort of awash in sensory data than that sort of person generally is. And the total mismatch in cognitive abilities leads to interesting stuff.

Don't get me wrong, though, I'm all for diversity. It just seems like often there's a specific type of people who show up to these things, and almost all other types of people are going to have trouble. The only time I feel really like people are going to understand even half of what I say are in groups that are mostly people with extreme sensory and/or motor differences, or at least have a significant number of us.


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04 Jan 2011, 5:09 pm

Ariela wrote:
Personally I never liked the structure the staff provides. I find it very condescending. They do not engage us in intellectual conversations. It feels like elementary school all over again. My interests tend to be very mature, more so than for most NTs of my age group and I don't like playing the silly games that the staff cooked up.

That's one of the reasons I feel strange about going. I don't really feel like being talked down to. I don't know if I would enjoy the activities or like what is going on. What if the organizers feel awkward about hosting and it is projected onto the attendees?
In my opinion, it's better to just go out in the world and take your chances in everyday life, meeting people that way. You might find someone you click with out of the blue ;)



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04 Jan 2011, 5:26 pm

I like the young interns better than the seasoned professionals and I enjoy Pizza and Game night more than the support groups because the moderators have limited control.

I don't mind being around NTs, but I like being with the family.



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04 Jan 2011, 5:34 pm

Ariela wrote:
I like the young interns better than the seasoned professionals and I enjoy Pizza and Game night more than the support groups because the moderators have limited control.

I don't mind being around NTs, but I like being with the family.

I understand what you mean about being with people you feel comfortable with and are like family. Not everyone out there in the "NT World" is an NT, though. If the experts are correct, there are many autistic people walking around undiagnosed just waiting to be met :)



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04 Jan 2011, 6:05 pm

Ana
My issues were more severe than most Aspies who will be diagnosed later in life. My social skills have improved to the point that I can "pass" as NT but as a child I basically lived in my own world even though I had no speech delays.



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04 Jan 2011, 6:14 pm

Ariela wrote:
Ana
My issues were more severe than most Aspies who will be diagnosed later in life. My social skills have improved to the point that I can "pass" as NT but as a child I basically lived in my own world even though I had no speech delays.

I did that too, a lot of the time. I had no speech delays but wasn't like NTs.



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04 Jan 2011, 6:14 pm

Ariela wrote:
Ana
My issues were more severe than most Aspies who will be diagnosed later in life. My social skills have improved to the point that I can "pass" as NT but as a child I basically lived in my own world even though I had no speech delays.

I did that too, a lot of the time. I had no speech delays but wasn't like NTs.



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05 Jan 2011, 4:08 am

I pretty much did whatever I wanted as a child and could not understand the consequences of my actions unless they were explained in explicit terms.