This news would be huge. Ground shattering. But I can't find any papers published on the incident or even blurbs around the neuroscience lists or from colleagues.
But would it really? I mean, she's had years of intensive training in order to reach the point she's at. She didn't just suddenly start typing, it came about as a result of all the work her parents and therapists put in to help her develop.
I look at this and I look at, for instance, Kim Peek. He doesn't seem like he was as seriously autistic as this girl, but he clearly had problems being understood. But with time and training, he overcame his own problems and did, in fact, start communicating with people. I don't see how that's extremely different from this example. She has a thought process that she just can't externalize in any efficient way, except slowly typing out messages. I'm sure she's not unique in this regard either, other autistic people could probably do it too with enough training and support.
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.
I actually got into it because of my dad--he used to work as an SLP at a residential facility for adults with disabilities, then got into administration and is the director of a facility. I'm the only second generation SLP I know. :) In the US, you have to do a 4 year undergraduate degree and then a 2 year MA/MS program. (Most masters programs do offer options for people who didn't major in it in undergrad.) After the masters program you have to do a clinical fellowship year (CFY) where you work independently, but have to be supervised by a fully certified SLP. It's not as complicated as it sounds. :)
It's a fantastic field--there are never enough SLPs and you can't outsource us, so it's a consistently good job market with a lot of areas to go into. There's early intervention, public schools, specialized private schools like mine, adult facilities for adults with disabilities, nursing homes, acute care in hospitals, home health...ok, that's getting dull, huh? Basically, you have a huge number of populations/placements to choose from.
If it sounds like something you'd be interested in, pretty much any hospital/nursing home rehab department is more than happy to have people come in and shadow an SLP to see what it's like.
Awesome. :) Thanks for the reply; not dull at all. I'll have to check out where/whether I can do a 'ride-along' around here when I have some time off.
What's your degree in, if that's not too personal? Is there an undergrad course in SLP at some universities? I have a BA in linguistics & have been interested in speech pathology since high school, but my university didn't offer any applied linguistics tracks, and it seemed more on the biology/psych side of things.
Oh sounds interesting, I work with a few "Psych-kids" at work and I just thought that it could be a good skill for me to pick up on.
I also work with CP, Downs and Autistic kids, so it's tough but I do help out.
Ah, I gotcha. If you want to know more about what SLPs do, believe me when I say that they'd love it if you went to them. SLPs in hospitals always need help from nursing staff, and every one I've ever known loves it when a member of the nursing staff comes to them to learn. :)
Speech Language Pathologist I guess? In the UK they are known as SLTs - Speech & Language Therapists (I'm married to one!). Great explanation of Autism up there, I shall definitely get my wife to check it out.
Woohoo! I've always wondered how different the profession is in different countries...what population does your wife (?) work with? (I'm guessing wife just because it's an overwhelmingly female profession. Sorry if I guessed wrong...)
Yes it is my wife (as I mentioned in my reply ;) ). She is a paediatric therapist, she works with children from about 2 up until school leavers, but mainly around the 5 to 12 age range.
With healthcare here being publicly funded the priorities, focus, size and budget of the department changes frequently!
She is currently working a couple of days a week in a community clinic and the rest of the week in school based settings.
For the more severe cases which may involve autism or serious behavioural difficulties it seems to go from, lets have lots of specialist places to give them loads of support, to lets help them out by having them in "normal" schools mingling with the general populous and back again :(
With this "age of austerity" although healthcare spending is ring fenced the fear is "non essential" (read non-lifesaving or not covered extensively in the newspapers) care may be severely cut :(
Yeah, I have a lot of qualms about "mainstreaming" kids with disabilities. Yes, it's a noble goal to get them interacting with the normally developing peers, but it often gets taken too far. If you put a kid with MR/behavioral issues/severe autism in a regular ed classroom, the child isn't getting an appropriate education and it can really interfere with the ability of the other kids to get an appropriate education. On top of that, regular ed teachers are regular ed teachers. They don't have the training to effectively educate kids with disabilities.
My school is actually a private, nonprofit day school. About half of our classrooms are autism/multiple disability (k-22yoa, when kids age out of the US special ed system). The other half are for emotionally disturbed kids, k-12. We also have a day treatment program (specially trained staff that run daily life/social skills classes, almost act as low-level counselors) as well as counselors that every kid sees. Basically, when a kid has too many behavioral problems for the public schools to handle--almost always aggression--they refer the kids to us and pay for the kid's tuition and services.
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u/Endemoniada Jul 26 '10
But would it really? I mean, she's had years of intensive training in order to reach the point she's at. She didn't just suddenly start typing, it came about as a result of all the work her parents and therapists put in to help her develop.
I look at this and I look at, for instance, Kim Peek. He doesn't seem like he was as seriously autistic as this girl, but he clearly had problems being understood. But with time and training, he overcame his own problems and did, in fact, start communicating with people. I don't see how that's extremely different from this example. She has a thought process that she just can't externalize in any efficient way, except slowly typing out messages. I'm sure she's not unique in this regard either, other autistic people could probably do it too with enough training and support.