Kaka
January 4, 2007 by Kristina Chew, PhD
Filed under Health
The title of this post is not meant to refer to what you might be thinking. Kakos is the ancient Greek word for “bad” and “evil.” The etymology of kakos can be traced back to the Proto-Indo-European word kakka, “to defecate”: Kakos means nothing nice or good. Kaka means, specifically, “bad or evil things” (for those who have a bit of Greek or Latin, kaka is an adjective in the neuter nominative plural).
Nonetheless, I have had the word kaka on my mind for the past two days, with both the meaning of “bad things” and, inevitably, the other meaning when the k’s are replaced with c’s, as a result of reading David Kirby’s there-is-no-autism-epidemic-rivers-of-diarrhea piece on January 2nd, and then Kim Stagliano’s account on the various crapisodes of her three autistic daughters on January 3rd.
Stagliano distinguishes her daughters’ disability as not the autism the “Neurodiverse (ND)” are talking about when they “speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits.” Like Kirby who suggests that there are “high functioning” autistic adults who have a disorder quite different from the “low functioning” children whose GI systems he writes of as feeling like “burning coal,” Stagliano is fine with her daughters getting “a new label” besides autism. She and Kirby both talk a great deal about kaka in their posts, in regard to the kaka that autism brings with it and in regard to the kaka that Stagliano is rightly pleased to see her children get into the toilet, and that the “E.N.D.” children in Kirby’s post are said to leave in swirls “on a favorite carpet or pet.”
Autism, in these bloggers’ views, is kaka, and thus they are fine with letting the “ND” have it all to themselves.
But perhaps a bit too much of this being thrown around here?
I suppose it all boils down to what do we gain & what do we lose by trying to redifine or rigidly define a very diverse population of people. At essence, it seems to me that we are trying to figure out kinship- what do we have in common or not? My son’s official diagnosis is Aspergers (plus OCD, Tourettes, Non-verbal Learning Disorder…) & he does have a lot in common with other people we have met who have AS- but he there are dissimilarities, too. Kristina’s Charlie may seem at first to be very different from my Brendan, but I see some deep similarities as well. It does not bother me to think of, refer to, help my kid understand that he is autistic, like Charlie. I prefer to weigh-in in favour of kinship rather than fracturing people into factions in imprecise & ill-understood ways. In community there is strength…
Kinship, consanguinity—-I see the same deep similarities too between Charlie and Brendan, and the same “surface” differences (Charlie has a lot less language and he can only read a few sight words). When you write about tics, I think of Charlie and some of his repetitive movements, the humming—the notion of “functioning” (high, low) seems to me get in the way of seeing those commonalities.
Yes, there is strength in community; I guess that is one reason why I am not sure about attempts to “divide and conquer” the autism spectrum.
I think the main problem is miscommunication. Stagliano is a great mom who loves her daughters and wants to see them develop and get rid of the most unpleasant aspects of autism. She should not be criticized for that. However, she doesn’t seem to understand very well the concept of neurodiversity and that the parents that advocate for neurodiversity also seek therapy for their autistic children – although they tipically are not buying the mercury/thimerosal theory or the legitimacy of chelation and other similar treatments.
Accepting one’s child being “neurodiverse” or “different” or just plain old autistic need not, indeed, be counter wanting to help educate her or him, whatever one’s child’s diagnosis—mild, severe, classic, or whatever term.
I don’t know if Kirby’s idea is a good one. It just seems like the people with AS are trying to take the autism label for themselves and trying to kick out everyone else who isn’t similar to them.
I agree with you Kristina. But it seems the debate is so emotional that people are not listening to the other side, and therefore failing to realize how much they have in common. We all love our children no matter what; the main difference is that some people believe in the mercury connection and chelation, while others don’t.
I’m also skeptical and I support the neurodiversity movement. However I still see that parents who believe in the mercury poisoning and who publicly talk about the negative side of autism are just as good parents as I am. In one way or another, we are all fighting for our kids’ well being and one cause complements the other.
And how to get us all to talk to each other is something I hope can be fostered!
Well interestingly cack handed is the slang for left handed, and being manually maladroit
(deconstruct manually maladroit, you have latin and norman french roots there and a sinister simile)
Well in some cultures the left hand is the hand one uses to wipe oneself after crapping, so you do not offer the left hand to anyone. Well the left hand path or sinister comes to mind aswell, trouble is the left hand path is also the one less travelled, and that makes all the difference.
And sinister is Latin for “left”……
Kaka.Bullshit.Everywhere. Even here. Yes, here. Has it occurred to anyone that maybe, just maybe, some of these children presenting as autistic are not actually, autistic at all? They are ill. That type of diarrhea, when accompanied by pale skin, rings under the eys, failure to grow, etc…says that THERE IS SOMETHING WRONG INSIDE THE BODY. There is a lot of this. We have lived it. Twin boys, one fairly healthy, one sick all of the time…viral and bacterial, lots of antibitoics, meds, breathing problems, etc…Guess what? At two, he was diagnosed with autism. No, we did not do chelation, but we saw many professionals, No, not a DAN! But Doctors who tested and looked and discovered a little body, completely torn up. Interesting to watch twins, compare their medical histories. One, the one who was diagnosed, received Ativan in his IV at 4 pounds in the NICU, the other didn’t. One, received 15 rounds of antibiotics in 20 months, the other didn’t. I’ll spare you all the details…Slowly, gradually as we addressed the medical issues and he began to heal, he began to grow, develop properly and finally surpass all of his delays and issues. At four, at Johns Hopkins, he lost his diagnosis. Cured of autism? Misdiagnosed? Who cares? He is well, healthy…neurodiverse or neurotypical, it doesn’t matter to me. We love him, accept him, want him regardless of any label. But he is well. When you are well, you can become. Become…whoever that may be. A better question would be, why are so many sick children being diagnosed with autism? Newsweek recently called autism a disease (more than once). It is not, but the confusion on the symptoms is blurring the lines, damaging the cause. A better question…Why the confusion between biomedical or environmental illnesses and autism? Be a bit more compassionate, some of these parents have sick children and they aren’t trying to eradicate autism, they just want their children, well…autism or not. Hope for more accurate assessments. Work towards your goal, but realize it is not parents who are blurring the lines. (or even Kirby) Some are told AUTISM and what they see is sickness, constant sickness. Two different things? Perhaps. More than likely, many different things…ONE being who a person is…which should be celebrated. The others, illnesses, nameless illnesses, which should be treated.
A better question would be, why are so many sick children being diagnosed with autism?
Why the confusion between biomedical or environmental illnesses and autism?
Thanks very much for commenting here and for writing about your children. I much appreciate your articulating so many questions that run through many parents’ minds—why, indeed, is “autism” the diagnosis on so many people’s, and indeed the general public’s, mind?
Kristina,
Thank you for paying such a great attribute to the Greek language. As a Greek I can’t help but feeling proud about it. As a mother of an autistic boy, I find myself many times wondering what life would be like if my child wasn’t autistic. Maybe it wouldn’t be so hard to catch his eyes or to get him dressed. Maybe it wouldn’t take so much effort to feed him (his only food for six whole months was yogurt). Maybe my husband and I wouldn’t be so tensed all the time by his misbehavior and tantrums. Maybe we would be able to go to other kids’ birthday parties without worrying about our son withdrawing from other children or, worse, getting bit up by other children. Maybe we would have known him better. We would have got rid of all the ‘kaka’ of autism and have our baby back. And then I come back to reality as it is, awful and frustrating.
I also spend a lot of time thinking of the word ‘autism’ and wondering why they named this condition like that. As you have already noted, the word autism comes from the Greek word ‘auto’ which means ‘it’. Why ‘it’? Does my child consider himself as ‘it’? So, maybe that’s why he doesn’t use the word ‘I’ when he talks about himself (he started using the word ‘I’ recently but I’m not sure if he understands the meaning or he just complies to his speech therapist’s directions).
I don’t know the cause of autism and I don’t know if there is any cure. All I know is that it’s the one thing I have never though that would cross my path in life and yet it did. And I resent it!