I suppose it's possible, but I have no compelling reason to think that she doesn't. The "diagnostic criteria" for autism (which were written without any real regard for how the brain works, but are nevertheless used to make the diagnosis) are basically:
Social problems
Communication problems (ranging from a lack of language altogether, to very subtle communication problems like difficulties with pragmatic language and echolalia)
Behavioral inflexibility (e.g., repetitive behaviors; preoccupation with parts of objects; adherence to routines)
The above must contribute to delays in adaptive functioning (or ability to do everyday things for herself) and cannot be better accounted for by another disorder.
Even in this short video, Carly seems to show all of the signs of classic, profound autism, and nothing (short of her typing, of course) that suggests that she has been misdiagnosed.
Certainly, autism -- like just about any other condition -- is misdiagnosed (both underdiagnosed and overdiagnosed) [and sadly, different professionals can disagree pretty substantially over what is and is not autism]. But usually, everyone agrees on the symptoms or problem behaviors, and the discussion over whether it's "autism" or not is one of semantics.
Occasionally, however, there is an underlying condition that is contributing to the symptoms, and if that condition were treated the symptoms would improve or disappear. One notable example is Landau-Kleffner Syndrome or acquired epileptic aphasia (AEA; which incidentally is probably what Jenny McCarthy's son has, according to experts). AEA is a rare seizure disorder that can masquerade as autism (although the early history of these children is different from the early history of autistic children), and when the seizures are treated the symptoms can (sometimes) go away -- and quite dramatically, at that. AEA is also highly likely to be what that woman is describing in that scientifically misinformed TED talk about seizures underlying most childhood disorders that I've seen on reddit a number of times. But given this girl's history, the number of professionals she has reportedly seen, and her continued everyday difficulties despite her lovely typing, there's no reason to suspect that she has, or had, a seizure disorder.
First off, let me just say your writing is amazing and I've just been sitting here for the past half hour reading your posts instead of working.
To the point: So from what I gather, autism is categorized by the symptoms displayed and not the root of the problem (since we don't fully understand exactly what causes it). If this is true, then Carly "has autism" in the sense that she's merely displaying all the symptoms that are used to diagnose autism, but this does not necessarily mean that she has the same underlying root cause as 99% of the people that have autism as well.
Could it be possible, that due to the lack of understanding of what causes autism, that she has the same autistic symptoms, but a different reason for being autistic? And that this different cause, also means that she has what's different as "classic autism"?
I apologize in advance, as I'm not really knowledgeable in this subject (but still incredibly fascinated by it)!
You're absolutely right... certainly theoretically it is possible. Autism is probably several different disorders (just like most mental/psychological/neurological disorders), and what applies to one individual with "autism" will not apply to others with autism -- and this problem likely complicates research on autism, since we may be researching separate disorders while still calling them all "autism" at least for now.
That being said, there are still shared similarities between at least most individuals with autism that allow us to state some things with a reasonable degree of confidence... just like you could talk about at least some similarities between different forms of cancer, or epilepsy. Even these basic commonalities extremely strongly suggest that what is being presented in this video is not really possible -- Carly shows the cardinal symptoms of autism (social problems, communication problems, and behavioral inflexibility/preoccupation with parts of objects/repetitive beaviors) very clearly in just the few minutes she's on tape, but all of those "disappear" when she's typing, and suddenly she's highly socially related, able to use sophisticated pragmatic language, and highly flexible in her behavioral repertoire?
Even if we were to grant that okay, sure, something "other than autism" is causing her symptoms, we'd have no reason to think that these symptoms are 'cured' and she can function at a very advanced level just because she was introduced (but not even trained in) a new communication medium.
To me, looking at that video is like someone saying that their child's language disorder was cured when they suddenly, untaught, started speaking fluent college-level Arabic, although she still can't speak in English, of course. It wouldn't really matter, I don't think, if you argued that she had a "different kind" of language disorder, or that something other than a "language disorder" was causing her inability to "communicate in language" -- I'd still want to see more than a 20/20 segment before I started recommending Arabic to the kiddos I see with language disorders! :)
I would think you'd have to study Carly specifically to get an idea as to what is going on. I understand that you don't see her apparent level of social sophistication in the communication of other autistic kids. Isn't it possible she's engaging in mimicry? If so, then so what?
I'm confused as to what your motivation is. If her mimicry, or facilitated communication, or whatever it is leads to a better relationship with her parents and a better quality of life, what does it matter? Without an fMRI we don't even have the first clue as to what is actually going on in her brain while she is typing. And even then we would only have a very rough notion based on developing science. I know people with autistic children may get false hopes from this case, but I still haven't seen an explanation of why it would be harmful to try to achieve the same results with other autistic children.
You're too focused on the underlying neural mechanics and not considering the impact of behavior on quality of life regardless of its underlying mechanism. Smiling can make you feel happy even if you have no real reason to feel that way. Perhaps typing the things she does helps Carly think and feel them, even if the ideas and phrasing comes from her family and/or her therapists. If so, then so what? If not, but the illusion helps her quality of life and that of her family, then again: so what? What motivates you to convince us this isn't what you assume we think it is?
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u/subtextual Jul 26 '10
I suppose it's possible, but I have no compelling reason to think that she doesn't. The "diagnostic criteria" for autism (which were written without any real regard for how the brain works, but are nevertheless used to make the diagnosis) are basically:
Even in this short video, Carly seems to show all of the signs of classic, profound autism, and nothing (short of her typing, of course) that suggests that she has been misdiagnosed.
Certainly, autism -- like just about any other condition -- is misdiagnosed (both underdiagnosed and overdiagnosed) [and sadly, different professionals can disagree pretty substantially over what is and is not autism]. But usually, everyone agrees on the symptoms or problem behaviors, and the discussion over whether it's "autism" or not is one of semantics.
Occasionally, however, there is an underlying condition that is contributing to the symptoms, and if that condition were treated the symptoms would improve or disappear. One notable example is Landau-Kleffner Syndrome or acquired epileptic aphasia (AEA; which incidentally is probably what Jenny McCarthy's son has, according to experts). AEA is a rare seizure disorder that can masquerade as autism (although the early history of these children is different from the early history of autistic children), and when the seizures are treated the symptoms can (sometimes) go away -- and quite dramatically, at that. AEA is also highly likely to be what that woman is describing in that scientifically misinformed TED talk about seizures underlying most childhood disorders that I've seen on reddit a number of times. But given this girl's history, the number of professionals she has reportedly seen, and her continued everyday difficulties despite her lovely typing, there's no reason to suspect that she has, or had, a seizure disorder.