Autism and belief: Part II
[NOTE: Part I is here.]
It turns out that the case of autistic 13-year-old author Naoki Higashida is more complex than that of Rom Houben. When I Googled his book (The Reason I Jump) online, I was expecting (hoping, anyway) to find at least a couple of scientifically sophisticated discussions of Higashida’s method of communicating, but I didn’t find much except for a few naysayers in the Amazon comments section for the book.
From the articles about it that I did find, it appears that Higashida first started communicating by having his hand guided in the usual facilitated communication manner, but now he does a lot of his typing himself—but always with a helper around to cue him somewhat and clean up and transcribe his copy. So it has been difficult—in fact, impossible—for me to sort out the contribution of the boy versus the contribution of his helpers.
I struck pay dirt, however, when I found the following video of the boy at work. I believe it’s from a few years ago, and my best guess after watching it is that Higashida does have some rudimentary language and even spelling and typing skills, but that the bulk of his book is the product of his helpers and his translators, whether they know it or not.
You can watch the video for yourself (the video, by the way, was made and presented by the group at Syracuse that was previously implicated in the most misleading and bogus cases of facilitated communication with autistic patients). It cannot be embedded, so you’ll have to go to the website to watch it; scroll down about three-quarters of the way to the video entitled, “I Write, So I Am Alive.”
In the video, Higashida is seen writing by way of pointing to a letter board in a form of syllabic Japanese, as well as typing on a computer keyboard in the method of Japanese spelling that’s based on Chinese characters. Of course, as a non-Japanese-speaker, I can’t evaluate what he’s actually pointing to or typing, and how it relates to the words the video is quoting him as writing, but he definitely is using his own hand to point and to type (one-handed, by the way). What’s more, as he points to the syllabic characters, he sometimes says them. So there’s no question he knows something about what they stand for in terms of sound.
From my viewing of the video, my conclusion is that he can even express fairly simple thoughts in this form of writing. But I noticed that, even though he seems to be moving his own hand, it’s curious that his mother is always close by, and often repeats what he spells or cues him by saying something before he even spells it, or cues him by saying a few words and having him “finish” the thought or answer the question. She’s there, too, when he’s typing on the keyboard.
My distinct impression is Higashida is autistic but moderately high-functioning, with some simple language skills and ability to convey some thoughts on his own through this medium. The rest of it is a combination of people cuing him, most likely unconsciously, and interpreting and refining his thoughts, filling in the blanks with what they would like to hear. I don’t know whether their intent is to deceive; it may be that, or it may be merely to offer hope and encouragement both to themselves and to him.
Higashida is clearly loved. But his communications suffer from exactly and precisely the same flaws as Houben’s did in terms of content: they are exactly and precisely what most parents and helpers would wish such a child would tell them if he/she could only speak. The following excerpt will give you a flavor of the sort of thing I’m talking about; the form of the book is a question and answer sequence:
Q: What are your thoughts on autism itself?
A: I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists. Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure.”
Watch the video, and see if you buy it. I don’t. The concepts are political as well as too PC (“selfish planet-wrecking”; “what truly matters for the Earth”) and too abstract (“distant, distant past”). They would certainly be possible for many and possibly most people who have Asperger’s syndrome, but that’s not Higashida’s state.
Here’s another quote from the book, supposedly the 13-year-old’s answer to the question “Why do you get lost so often?”:
…people with autism never, ever feel at ease, wherever we are. ”¦ I don’t think we’ll ever be able to reach our Shangri-La…
Shangri-La? Are we to think this boy has been reading that old chestnut, Lost Horizon? And knows to use as a figure of speech the name of the fictional land it describes? It seems highly unlikely.
Most poignant of all are these sorts of statements, which fit in so well with the hopes and dashed dreams of parents:
The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone.
If someone has submitted Hikashida to the sort of experiment which Houben was finally subjected to, I certainly haven’t been able to find a single report of such a test. And yet it is warranted, I’m afraid, although it’s possible that with Hikashida’s relatively high-level skills he would be able to pass a test that wasn’t too rigorous. For example, has he ever typed messages without his mother being present, and how complex are they (although of course, some people would conveniently explain any such failure to his emotional agitation at her absence)? Are his messages always interpreted, translated, and cleaned up by one of his usual helpers? Has any skeptic or scientist ever taken a look at what Hikashida is writing on his own—his raw copy, that is?
If that’s been done and he’s passed the test, fine. I have no problem with it. But till then, I’m a doubter, and I believe rightly so.
[NOTE: There’s a lot more general information about facilitated communication here. Let me add that facilitated communication is much more likely to be valid when the subject suffers from a motor problem that does not affect the mind, such as for example cerebral palsy. But autism is qualitatively different.
Watch the videos there and ask: why is the facilitator always touching the subject, even slightly? If it’s so slight a touch, why is it necessary to maintain the contact? Think of the Ouija board and how small a touch will suffice for cuing. Also, do you wonder why the facilitators’ eyes are so often more riveted to the keyboard than the subject’s? Or what would happen if the facilitator could touch the subject’s shoulder to steady him/her but was blocked from seeing the keyboard? And do you wonder why such experiments aren’t being performed?
Here’s an ad for facilitated communication. Note the unctuous tone and the attitude toward skeptics:
The world of facilitated communication is ripe for more research, but not especially receptive to it.]
I found a review of The Reason I Jump by perhaps the most famous person with autism, Temple Grandin. She doesn’t seem on board with “facilitated communication” and liked the book because she sees it as a product of an individual who has the ability to communicate independently:
She goes on to say that what Naoki has is “a kind of ‘locked-in’ syndrome, whereby an intelligent mind is trapped inside a body that has difficulty controlling movements. Tremendous effort is required to pay attention.”
Here she talks more about that inability to control movement:
The full review is here.
The primary difference between high and low functioning is how they were trained mentally and physically as children.
If a person has normal motor and language skills, they generally can unlock their own skills and problems, breaking past the block.
If they lack normal motor and language skills, then something must supplement or else their brain will atrophy due to lack of use. And by lack of use, I don’t mean comatose muscle degeneration, but the kind of atrophy that results from being in a sensory deprivation chamber for a decade or two, while conscious.
By the time someone has suffered that length of exile and deprivation, their minds will have shattered, gone catatonic, and regressed to a very non functional level.
At that point, trying to tease them out by using normal or special training is meaningless. The brain has been damaged to the point where it is now withdrawn.
As for environmentalism.
People with autism, for some reason, don’t understand human deception and what human nature is. Well, if they did, they would probably adjust themselves in better ways first.
So if they hear stuff about environmentalism, which is present in Japan and is independent of the PC movement in the West, it’s not like they can tell the difference between truth and false universes.
Pick any author in the West that is supposed to be educated and ask them about Global Warming. See the difference?
Once again, most people believe what they want to believe.
I was always interested to hear Temple Grandin when she was interviewed on NPR. She had such an odd and interesting take on things, especially animal behavior, yet by the skin of her teeth she was able to function in the human world.
There was a book … an essay? that I read so long ago that I really can’t remember much of the particulars – basically, a young couple’s youngest daughter was what we now recognize as autistic and at the age of three or four (maybe – it’s been a very long time) and displayed a whole spectrum of phobias and odd behavior. One of them was of walking on sand … which came up all of a sudden. A family outing to the beach, or something? And her father was just at the end of his tether. He picked her up and dumped her on the sand. Several times … and that was a kind of break-through. That particular act broke through whatever sensory barrier the daughter experienced. They were able to reach their daughter, and she was able to reach to them. She still needed rather intensive schooling, but developed after that in a more normal way. Anyone else remember this account?
Give it a rest.
I am skeptical of facilitated communication. However, I do not discount the possibility of some sort of improvement of the “autistic” condition, such as Sgt. Mom describes. Rupert Isaacson’s The Horse Boy: A Memoir of Healing recounts one such improvement, a combination of horses and Mongolian shamans. The author consulted Temple Grandin before going to Mongolia. Her advice- try the trip to Mongolia- it’s better than doing nothing.
Some 7 years have passed since Isaacson, his wife and autistic child made the healing trip to Mongolia. It would be interesting to check up and see how things are going now.
Incidentally, when I mentioned this book to my Montana horse-owning cousin and her husband, they were not surprised at hearing the response of an autistic child to horses. They had seen the same when a special ed teacher brought some of her charges over to their acreage.
Ann:
I disagree with Grandin that this is not facilitated communication. It’s not fully facilitated communication, it is partially facilitated communication. The facilitation is not so much in the typing itself (although I believe the mother is cuing him somewhat there, too) as in the transcribing and translation and rephrasing/rewriting.
I wonder whether Grandin actually watched the video.
Neo,
Have you turned off your spambot filter?
It’s a new version of the Spam Way. Like new version of Ebola, T.
neo-neocon,
Regarding facilitated communication, I share your skepticism. However, I think much or most of it is done with good intentions by well intentioned people. People subconsciously assisting in a fraud for altruistic reasons. However, medical professionals need to address this honestly and accurately.
My wife is a medical professional and developmentally delayed infants have been her specialty for years. She’s seen a lot of autism and she does think it’s becoming more prevalent. Her theory is twofold: more women having children late in life and a society and medical profession more attuned to finding cases on the “more normal” end of the spectrum.
She also works with kids and their parents, and most all of the parents are susceptible to anything that might help their child. It’s interesting; it seem that many of the fathers try to deny it, or try methods like the “throwing on sand” technique written in a prior comment whereas the mothers seem motivated to finding techniques, exercises, foods, medicines… that will result in improvements. Many couples divorce.
She is a skeptic and a good, critical thinker, but she is trained in Sensory Integration techniques and they really can help in many instances. Things like brushing, wrapping in blankets, music, swinging (there are even charges that are like cocoons, suspended from ropes that envelop the child as he swings… As in the Temple Grandin excerpt someone provided, overstimulating some of their senses seems to help them focus or tune the real world in.
Lots of mistakes in the above (I published prior to proofing), but “charges” = “chairs” is probably the most egregious. “(there are even chairs that are like cocoons…”