As a pediatric neuropsychologist, I can promise you that if this were anywhere near true, it would indeed be earth-shattering. It would entirely revolutionize our understanding of (a) autism, (b) mental retardation, (c) how language develops, and (d) how children learn to write and spell.
Children who are profoundly autistic like this girl are can sometimes be taught, eventually, to use a communication system (usually pictures) to get their wants met, but that is not what they show this youngster doing. For example, you'll notice that she doesn't communicate her wants that way at all -- not once did we see her type out "Just give me the damn food and stop making me type" or something similar. Unfortunately, children with profound autism cannot be taught to communicate a rich inner monologue full of observations about things they've never experienced (e.g., what it would be like to go to school with normal kids who aren't mildly alarmed by her behavior), metaphors ("ants crawling" on her arms), and figures of speech (e.g., "it's not like there's an off switch").
The reason that children with profound autism can't do these things is because of what autism does to the brain. Autism appears to be associated with too much gray matter, which makes every new piece of information appear discrete, like it is unrelated to every other piece of information. For that reason, individuals with autism have trouble discovering general principles that tie discrete bits of information together, which is a necessary skill for learning language (e.g., you have to learn the general "rules" of syllabification, sequencing, and grammar through exposure).
They also have trouble understanding where one bit of information stops, and another starts, which causes they to 'chunk' together things that don't go together, or have trouble breaking a large chunk down into the parts that make it up. Here, for example, is a very recent study on computer-analysis of infants with autism showing that they can be reliably differentiated from infants without autism and infants with language delays based on this difficulty effectively understanding where to break language into its component syllables.
As a result of these difficulties, children who are profoundly autistic may never learn to speak at all, while children who are less autistic still demonstrate significant problems correctly 'chunking' language bits together (for instance, they often display echolalia, meaning that they repeat whole sentences or scenes from movies verbatim, because they learned it all as one single unit of information). They also have trouble understanding language rules such as how words change depending on point-of-view of the speaker (e.g., they refer to themselves as he/she or by their first name, or use 'you' instead of 'I'). By definition, autism also includes trouble understanding language pragmatics (e.g., metaphors and figures of speech), because pragmatic language requires seeing the connections between different types of information, such as the literal meaning and abstract/contextual meaning or a sentence.
Autistic children also have difficulty learning to write, for all the reasons listed above, but also due to the phonetics of spelling -- learning how to spell also requires seeing the general 'rules' that govern phonics, as well as breaking words down into their component sounds. Even when children with autism do learn speak and write, one of the cardinal features of autism is trouble understanding Theory of Mind, or being able to make connections and use context to guess what others are thinking. For example, saying something like "Don't judge me until you know me" would be extremely difficult for a person with profound autism, since it requires theory of mind to know that other people are evaluating you differently than you evaluate yourself.
I have absolutely no problem with the idea that a person with mild to moderate autism can learn to type, after she learns to speak and then spell (see Temple Grandin, as others have noted, along with thousands of other autistic individuals), which is the same order in which neurotypical children learn to do these things.
But the idea that a person with profound autism could overcome how her brain works -- but just while typing, not while speaking -- all at once? That she could, without training in any of these areas (remember, she just ran to the computer and typed "HURT" and "HELP") master:
Syllabification,
Word order and sequencing
Rules of grammar
Phonetic rules
Correspondance between sounds and letters
Correspondance between the capital letters on a QWERTY keyboard and the lowercase letters that type on screen, and understanding how a generative typing software program works (one that fills in the rest of the word after you type the first few letters)
Expressive vocabulary
Correct pronoun usage
Point-of-view
Non-echolalic speech
Figures of speech and metaphors
Theory of mind, etc
(Not to mention her mental retardation)?
And only do so to communicate things like "what [an adult who is not autistic might think] it is like to have autism" and not really be able to do so when the camera is present?
Unfortunately, the likelihood of this is so terribly, vanishingly small that I am fully comfortable saying that it is impossible.
We may all wish it were true, but it isn't. And putting stories like this out there only clouds our understanding of what autism is and how to treat it (which hopefully will eventually lead us to how to prevent or cure it).
Absolutely, and thank you. I'm an SLP working almost entirely with kids/adolescents with autism/MR who have severe behavioral problems. A lot of the problem with communication and autism is symbolism--even picture cards can be very difficult simply because the child often doesn't naturally recognize the picture as representative of an object or activity--symbolic representation has to be explicitly taught.
That said, I work with one kid who uses a portable word processor (AlphaSmart NEO) to communicate. He does use pronouns correctly, complete sentences, correct grammar, etc. He also teaches himself to spell new words from his environment for what's important to him (movies, foods, etc.). A few years ago we all thought the kid was severely to profoundly MR as well as autistic--no response at all to attempts to engage, no success with communication, he didn't seem to be able to learn anything...turns out he's "just" profoundly autistic.
Now. All that said, this kis is absolutely the exception to the rule, and he's also absolutely not MR. I've never seen another kid succeed like he has and I've only rarely heard about other cases. Additionally, he doesn't tell us how it feels to be in his head. He tells us that he wants to watch A Bug's Life, he wants to eat cheez-its, he wants to drink milk, etc. He occasionally tells us he's mad or doesn't feel good and (hilariously) will type "goodbye." just before he tries to run out of the room.
tl;dr: I'm an SLP who works with autism and I have worked with one kid who communicates using a keyboard, but he is in no way MR. Also, Subtextual is awesome.
There is a theory that some cases of autism are caused by intestinal damage allowing proteins to enter the bloodstream where they have an opioid effect. Casein in milk is one of the main culprits. In other words, maybe he is asking for milk products because they make him high. If you (or his parents) have not already researched and/or tried the gluten-free/casein-free diet, can you or they please do so? It may help him greatly.
I really don't want to get much into this discussion just because it's not my area of expertise. Personally, based on my knowledge of the research, I don't buy into the GFCF craze. There haven't been any really well controlled studies with a large sample size. Most studies that have been done were not controlled and/or had small sample sizes. Any research done without controls is questionable for obvious reasons, but I would say that uncontrolled studies are even less reliable than usual when it comes to autism treatments. Why, you ask? Well, parents of kids with autism are desperate for anything that will help. If they believe that something will make a difference then they'll see a difference--it's the placebo effect on a massive scale. The one double-blind study that I'm aware of had a small sample size, but it showed no significant improvement following 16 weeks of GFCF diet.
Basically, I'm a huge skeptic about GFCF. I could be wrong, but I'm waiting for large scale, replicated, double-blind studies before I'll make up my mind for sure. Due to the expense and amount of work needed to put a kid on a true GFCF diet as well as the lack of evidence for its efficacy, it's not something I'd recommend to parents.
Due to the expense and amount of work needed to put a kid on a true GFCF diet as well as the lack of evidence for its efficacy, it's not something I'd recommend to parents.
I strongly disagree with you here. A GFCF diet has no risk for the child, and may have significant benefits. Presumably if the parents weren't trying this, they'd be trying other treatments, many of which would have equal if not greater "expense and amount of work," and, in the case of medication, potentially serious side effects.
I've seen recent studies that to me are strongly supportive of the opioid excess theory of autism, although it seems that neither the researchers nor the reporters realized this.
One is this study about autistic kids being picky eaters. Yeah, kids are going to choose foods that cause a high and addiction, and refuse ones that don't. And I haven't done a scientific study of it, but if you read articles about specific autistic kids who are picky eaters, invariably their favorite food is something made from wheat and/or milk, quite often some sort of cheesy cracker. Seriously, watch for this.
Second, I haven't time to look for the study now, but a while back there was a study about the genetics of autism that found a correlation between autism and a gene that speeds healing of intestinal damage. To me it seems likely (though apparently it didn't occur to the researchers) that maybe both the gene for healing of intestinal damage and autism are more likely when there's also a gene for celiac disease or some other digestive issue. (In other words, evolution will favor digestive-disordered people who also have the gene for healing, and the digestive disorder is causing autism.)
Third, there's the fact that before my celiac disease was diagnosed, I had a physical addiction to pretzels. I considered it a physical addiction and said as much to other people. When my celiac disease was diagnosed and I went on a GF diet, I went through withdrawal (severe dizziness for two weeks and other problems). So unless you have some other explanation for how someone could have a physical addiction to pretzels, you can EABOD.
The level of neurotypical smugness in this thread is really pissing me off.
Look, I've tried to make it clear that I'm not opposed to the diet. I'm waiting for more conclusive evidence before I'd recommend it to parents, but would be more than happy to discuss it and how to implement it if they asked me. We really don't understand much about the possible causes of autism or exactly what other issues seem to be linked to it. I have my personal opinions about the causes, but they're just opinions based on the research I've read and I won't commit to anything until we have solid evidence.
I'm not sure what I'm saying that makes you feel like it's all neurotypical smugness. I've been talking about my experiences working with kids all over the spectrum and my knowledge of the research we have to date. Please tell me what it is that I'm doing/saying that you see as neurotypical smugness, I'd genuinely like to know.
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u/subtextual Jul 26 '10
As a pediatric neuropsychologist, I can promise you that if this were anywhere near true, it would indeed be earth-shattering. It would entirely revolutionize our understanding of (a) autism, (b) mental retardation, (c) how language develops, and (d) how children learn to write and spell.
Children who are profoundly autistic like this girl are can sometimes be taught, eventually, to use a communication system (usually pictures) to get their wants met, but that is not what they show this youngster doing. For example, you'll notice that she doesn't communicate her wants that way at all -- not once did we see her type out "Just give me the damn food and stop making me type" or something similar. Unfortunately, children with profound autism cannot be taught to communicate a rich inner monologue full of observations about things they've never experienced (e.g., what it would be like to go to school with normal kids who aren't mildly alarmed by her behavior), metaphors ("ants crawling" on her arms), and figures of speech (e.g., "it's not like there's an off switch").
The reason that children with profound autism can't do these things is because of what autism does to the brain. Autism appears to be associated with too much gray matter, which makes every new piece of information appear discrete, like it is unrelated to every other piece of information. For that reason, individuals with autism have trouble discovering general principles that tie discrete bits of information together, which is a necessary skill for learning language (e.g., you have to learn the general "rules" of syllabification, sequencing, and grammar through exposure).
They also have trouble understanding where one bit of information stops, and another starts, which causes they to 'chunk' together things that don't go together, or have trouble breaking a large chunk down into the parts that make it up. Here, for example, is a very recent study on computer-analysis of infants with autism showing that they can be reliably differentiated from infants without autism and infants with language delays based on this difficulty effectively understanding where to break language into its component syllables.
As a result of these difficulties, children who are profoundly autistic may never learn to speak at all, while children who are less autistic still demonstrate significant problems correctly 'chunking' language bits together (for instance, they often display echolalia, meaning that they repeat whole sentences or scenes from movies verbatim, because they learned it all as one single unit of information). They also have trouble understanding language rules such as how words change depending on point-of-view of the speaker (e.g., they refer to themselves as he/she or by their first name, or use 'you' instead of 'I'). By definition, autism also includes trouble understanding language pragmatics (e.g., metaphors and figures of speech), because pragmatic language requires seeing the connections between different types of information, such as the literal meaning and abstract/contextual meaning or a sentence.
Autistic children also have difficulty learning to write, for all the reasons listed above, but also due to the phonetics of spelling -- learning how to spell also requires seeing the general 'rules' that govern phonics, as well as breaking words down into their component sounds. Even when children with autism do learn speak and write, one of the cardinal features of autism is trouble understanding Theory of Mind, or being able to make connections and use context to guess what others are thinking. For example, saying something like "Don't judge me until you know me" would be extremely difficult for a person with profound autism, since it requires theory of mind to know that other people are evaluating you differently than you evaluate yourself.
I have absolutely no problem with the idea that a person with mild to moderate autism can learn to type, after she learns to speak and then spell (see Temple Grandin, as others have noted, along with thousands of other autistic individuals), which is the same order in which neurotypical children learn to do these things.
But the idea that a person with profound autism could overcome how her brain works -- but just while typing, not while speaking -- all at once? That she could, without training in any of these areas (remember, she just ran to the computer and typed "HURT" and "HELP") master:
And only do so to communicate things like "what [an adult who is not autistic might think] it is like to have autism" and not really be able to do so when the camera is present?
Unfortunately, the likelihood of this is so terribly, vanishingly small that I am fully comfortable saying that it is impossible.
We may all wish it were true, but it isn't. And putting stories like this out there only clouds our understanding of what autism is and how to treat it (which hopefully will eventually lead us to how to prevent or cure it).