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in the world of science e^3.7254
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Falkonn



Joined: 05 Aug 2006
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Location: Beneath the pile of babies~

PostPosted: Wed Sep 15, 2010 6:27 pm    Post subject: Reply with quote

Interestingly enough, they are fraternal.
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mouse



Joined: 10 Jul 2006
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PostPosted: Wed Sep 15, 2010 7:06 pm    Post subject: Reply with quote

i'm glad your kids are in a good program, and doing well, falkonn.

the genetic results should be interesting - although i don't know if they will be looking for a specific allele (i.e., an expected sequence of bases), or will pick up novel mutations (which the UCSD report seems to suggest is a maor issue).

clearly, autism is a real thing, and it looks like they are getting some idea of the causes - but it does seem that there are a lot of diagnoses that are trying to classify any behavior even slightly out of the norm as being, to some degree, autistic. i mean, i've met you - you seemed to me to be pretty much like most of the people i know; i'm surprised that someone would diagnose you as anywhere on the spectrum. (and for the record - i do know a couple people who are _definitely_ outside the normal range of social skills, at least one of whom i suspect actually would be diagnosed as somewhat autistic - so it's not like i think absolutely everyone is 'fine") it does sound like your kids were properly diagnosed - but one wonders how many other kids were diagnosed just because they were a little slower or more withdrawn than their contemporaries.
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Falkonn



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PostPosted: Wed Sep 15, 2010 9:09 pm    Post subject: Reply with quote

Yeah, that would be why she described me as high functioning (I read an article that talked about ASD patients that the author called recovered autistics once as well). The way she described it, I had just figured out coping mechanisms for dealing with it.

You got to see me on a good day. I've also figured out that it is much easier for me to talk to people if I've met them online first (Like way way easier). Almost all of my friends at this point in my life consist of people that I've met online. I still keep in contact with a few people from college/high school (literally...like 3 or 4). I know one person that doesn't fit into any of those categories. I've lived in Columbia, md for two years and I had to go to Ohio in order to make a friend that lived around here for some reason (Yay Origins game fair).

I couldn't begin to describe to you how impossible it would be to start up a conversation with someone that I didn't know in a normal social setting (a bar, a coffee shop, passing on the street, etc.) that was more then a polite "hello" kind of thing due to the crippling social anxiety. Even that will make me break out into a cold sweat sometimes.

I don't mean to hijack this thread and make it my personal journal or anything, so I'm sorry if it seems like that. Like I said earlier, this topic just kind of hits home for me and I have a lot to say about it apparently.
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mouse



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PostPosted: Wed Sep 15, 2010 9:16 pm    Post subject: Reply with quote

no, it's interesting. that sounds like evidence for a genetic basis - as i said, it will be interesting to see how the tests come out.

one is still left with the 600+% increase in diagnoses. i suppose an evolutionary explanation would be that somehow, the gene for autism became less deleterious to reproductive efforts (i.e., people with autism started managing to get out and meet members of the opposite sex, etc., more than was the case in the past) - but this increase is over ~20 years, which is a short time for a mechanism like that to have such a profound effect, i would think. for one thing, the internet hasn't been that widespread for all that long Very Happy

still leaves vaccines pretty much in the clear.
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Falkonn



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PostPosted: Wed Sep 15, 2010 10:02 pm    Post subject: Reply with quote

We still have to go through the process of getting into the study, but they approached us. Plus we would be a really good sample for them as both of our kids are autistic. The biggest thing that I'm hoping to hear from them is what the odds are that if we have another kid they would be autistic (Pretty high I imagine, but one could hope). I'm not even sure if they have the autism gene thing figured out that far tbh though. We have our girls and both thought it would be nice to have a boy someday. Maybe someday, maybe not. Who knows.
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Dogen



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PostPosted: Wed Sep 15, 2010 10:04 pm    Post subject: Reply with quote

Part of the problem is that high-functioning autism isn't a diagnosis, so there are no criteria for applying it. It's like calling someone a jackass. You can apply it to anyone based on your own interpretation of what it means. Once you get outside of codified diagnostic criteria the whole thing goes to hell. Do high-functioning autistics have behaviors reminiscent of autistic behavior, just not strong enough to meet the criteria? Do they have some behaviors that fit the criteria, but not enough different behaviors to meet the diagnosis? Compound this with the generally vague diagnostic criteria for autism as it is - seriously, "marked impairment in the ability to initiate or maintain a conversation with others?" - and the whole thing is open to wild interpretation. To the extent that high-functioning autism and Asperger's overlap, I'm willing to accept the term as indicative of something potentially biological. However, if you don't meet the diagnostic criteria for autism then there's no scientific evidence to assume there's anything biologically abnormal about you, because we can see the same deficits you've described in totally normal people who simply lack skills - and skills (like small talk) can actually be taught.

This isn't intended to be offensive or an attack. I just think that using non-diagnostic terminology to lump people into "almost autistic" groups is potentially damaging, and could prevent them from seeking the help they need to overcome the deficits because they think they have a genetic disorder and can't change. I don't want to demean you, or imply anything about the diagnosis of your children. I just urge you to consider that behavior is both biological and learned, and we can't always tell from whence it came, especially in such minor arenas as chit chatting.
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Falkonn



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PostPosted: Wed Sep 15, 2010 11:03 pm    Post subject: Reply with quote

No offense taken Dogen. I know what you mean about autism being difficult to diagnose. I think a lot of that has to do with the fact that it's a spectrum disorder. I imagine that anyone that spends lots of time with children has probably known an undiagnosed child on the mild end of the spectrum and not even known it. At the same time I bet that some of the children that are diagnosed as being mildly autistic could have just met some of the criteria and been improperly diagnosed. And that doesn't even go into the highly functioning conversation that you brought up.

On the other hand, I think autism cases that are diagnosed as being on the moderate+ side of the scale are almost always right. It is a lot easier to see at that point. I'm no expert and I've identified which children had ASD in a mixed room of ASD/non-ASD spectrum children before (therapy organized play dates before my kids got into the program they are in now.).
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Unnamed?



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PostPosted: Wed Sep 15, 2010 11:52 pm    Post subject: Reply with quote

mouse wrote:
no, it's interesting. that sounds like evidence for a genetic basis - as i said, it will be interesting to see how the tests come out.

one is still left with the 600+% increase in diagnoses. i suppose an evolutionary explanation would be that somehow, the gene for autism became less deleterious to reproductive efforts (i.e., people with autism started managing to get out and meet members of the opposite sex, etc., more than was the case in the past) - but this increase is over ~20 years, which is a short time for a mechanism like that to have such a profound effect, i would think. for one thing, the internet hasn't been that widespread for all that long Very Happy

still leaves vaccines pretty much in the clear.


I really doubt a genetic selection explanation for such a short time period. I agree with the article that the change in diagnostic criteria along with a greater awareness of the disease (i.e. diagnosis at a younger age) are the two largest factors that probably explain the increase in autism diagnoses. This is often the case with "soft" medical diagnoses that don't have a significant pathology component that begin to have greater awareness both in the public and medical domains.
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Thy Brilliance



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PostPosted: Thu Sep 16, 2010 3:49 am    Post subject: I'm so glad to be living in this day and age of change Reply with quote

In 30 years none of this will matter.
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Lasairfiona



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PostPosted: Thu Sep 16, 2010 6:48 am    Post subject: Reply with quote

NPR was talking to a couple of journalists from The Atlantic today because they wrote a piece on Donald T, the first person diagnosed with autism. He is 77 and doing well. It doesn't hurt that he is very well off. The article shows how a person with autism and advantages can grow up to be just fine. The optimistic perspective is nice since we so often hear about how rough it for an autistic person.

Give it a read.

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Dogen



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PostPosted: Thu Sep 16, 2010 11:01 am    Post subject: Reply with quote

Falkonn wrote:
No offense taken Dogen. I know what you mean about autism being difficult to diagnose. I think a lot of that has to do with the fact that it's a spectrum disorder. I imagine that anyone that spends lots of time with children has probably known an undiagnosed child on the mild end of the spectrum and not even known it. At the same time I bet that some of the children that are diagnosed as being mildly autistic could have just met some of the criteria and been improperly diagnosed. And that doesn't even go into the highly functioning conversation that you brought up.

On the other hand, I think autism cases that are diagnosed as being on the moderate+ side of the scale are almost always right. It is a lot easier to see at that point. I'm no expert and I've identified which children had ASD in a mixed room of ASD/non-ASD spectrum children before (therapy organized play dates before my kids got into the program they are in now.).

I wasn't talking about your kids. Like I said, being diagnosed with autism is different - there's a list of criteria you have to meet. No criteria, no diagnosis. Your kids met it, so if their therapist is worth a damn then I've got nothing against it.

I was talking about applying the high-functioning label to you. It's an undefined term that could mean anything - including something entirely unrelated to autism. Just because you have behavior that is reminiscent of autism (however vaguely) doesn't mean you have any biological differences that are suspected in autism (mirror neurons, synaptic formation, neuron migration hypotheses, etc.). Your brain could be 100% perfect and you could still exhibit anxiety when holding conversations with strangers. My problem is with someone telling you they see high-functioning autistic behavior in you, because the term "high-functioning autism" literally mean nothing in terms of either a diagnosis (it isn't in either the DSM-IV or ICD), or behavior (since it isn't a diagnosis, there's no criteria for when it applies and when it doesn't).
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mouse



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PostPosted: Thu Sep 16, 2010 8:06 pm    Post subject: Reply with quote

the article on donald t is quite interesting. for one think i hadn't realized that autism was first described as recently as 1943 - shouldn't surprise me, i guess, but it makes sense that people are still getting straight what it is.

and the description of how donald managed to fit into his small town - one wonders how many other people have similarly fit in, in one way or another - as eccentric or odd, maybe, but not someone with a mental illness. so it brings up the question - how different do you have to be for someone to feel they have to diagnose you? this, i think, is where the social aspect of increased diagnoses comes in - you decide what is "different enough" to a large extent by what other people feel is "different enough" - and that probably varies between communities, and gets sensitized after the first member of the community is diagnosed. hence the relationship between diagnosis and distance from another person diagnosed as autistic. really extreme cases have probably always been picked up, one way or another (apparently to be classified as retardation, in earlier years) - the difference we are seeing is how milder cases are perceived.
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Falkonn



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PostPosted: Fri Sep 17, 2010 1:13 pm    Post subject: Reply with quote

I realized that you were talking to me. I chose to ignore that and try to answer you more generally as it seemed less likely to turn into some sort of weird argument.

I also realize that the high functioning label doesn't mean much. The way I meant to use the term was to indicate that I might be autistic, and that I lead a pretty normal life (albeit a fairly non-social one). I'm sorry if me using the term was misleading.

That being said, the other reason that I'm looking forward to the genetic testing is that it could "diagnose" me one way or the other. Honestly though, I'd be somewhat surprised if I'm not. When we saw the specialist it was pretty crazy how often I answered yes to the questions the specialist brought up for myself as well as the kids. "Yes, they do that and I also used to do that when I was a kid." was something that I said many times during their diagnosis.

That being said (and this time its my turn to say no offense meant), is there a reason that this is such an important topic to you? Feel free not to answer if you don't want to. I'll understand.
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Dogen



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PostPosted: Fri Sep 17, 2010 3:17 pm    Post subject: Reply with quote

Not anything specific, I'm just sensitive to how people adapt to labels. Like I said, behavior itself (especially borderline behavior) isn't necessarily indicative of biological differences, meaning the behavior may be alterable (if it's desired) with training. Labels can (often) be limiting, so I'm not a fan of using them haphazardly, when there's no point, such as when someone doesn't currently meet any diagnostic criteria (and thus by definition doesn't have a disorder, period). I imagine you're happy in life, and you may not feel any more limited by thinking of yourself as autistic, but a lot of people do get boxed in by their labels.
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Darqcyde



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PostPosted: Wed Sep 29, 2010 6:35 pm    Post subject: Reply with quote

Falkonn wrote:
I realized that you were talking to me. I chose to ignore that and try to answer you more generally as it seemed less likely to turn into some sort of weird argument.

I also realize that the high functioning label doesn't mean much. The way I meant to use the term was to indicate that I might be autistic, and that I lead a pretty normal life (albeit a fairly non-social one). I'm sorry if me using the term was misleading.

That being said, the other reason that I'm looking forward to the genetic testing is that it could "diagnose" me one way or the other. Honestly though, I'd be somewhat surprised if I'm not. When we saw the specialist it was pretty crazy how often I answered yes to the questions the specialist brought up for myself as well as the kids. "Yes, they do that and I also used to do that when I was a kid." was something that I said many times during their diagnosis.

That being said (and this time its my turn to say no offense meant), is there a reason that this is such an important topic to you? Feel free not to answer if you don't want to. I'll understand.


..wait...is falkonn really bram cohen!?!? Seriously though, MY wife and I were talking about how we wish her sister would get involved with a program like you are. She has identical twin autistic 12 year olds, a 9 year old daughter diagnosed with ADD, a 7 year old son who not only has a PDD-NOS (which her doctors believe may be connected to some fairly-unique internal organ malformations (kidneys, intestines, pancreas) which they only found a couple of years ago and the net result of was basically him being malnourished pretty much his whole life) and she has one more kid ...who is only 3 so who knows...

Oh I mention the twins in particular since they are quite different. Alan has almost no social skills, is highly intelligent (compared to his brother), and can say a few words. Michael actually was just intergrated into a 2nd-grade class and speaks sign language fluently. Considering that her sister is a woman who vigorously supports autism research it's that much more frustrating. The worse part is the main reason she has no interest is because when she was approached she was told that she would have to go to Philadelphia and her issue was that "Philly is just too far."....yeah, a whole 1.5 hours from her house...with bad traffic. Rolling Eyes
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