Why I Don’t Worry About Causation
What causes autism?
A lot of ink (real and digital) gets spilled over this question. “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism,” notes Autism Speaks in its statement of its Goals. “There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function,” notes the Autism Society of America. “The question of what causes autism is highly controversial,” notes an October 20, 2006 article on About.com, which further notes that “Many people are passionate about the issue, and hold strong beliefs.”
This statement is indeed true, as evinced by some recent discussions here regarding environmental toxins and vaccines. When I read accounts of researchers, or of parents, in determined pursuit about what caused their child to become autistic, to change from a happy and normally developing child overnight, I often feel as if I am reading a tightly paced mystery novel, or the script to a fast-paced suspense movie, in which the protagonist is (like the mother in Lorenzo’s Oil) on a hunt to find the culprit that did this to her child.
Years ago, I pasted the image from Charlie’s ultrasound into his baby book and, from time to time, I take it out to remember. What stands out (it is an ultrasound image) is the large roundness of his head and his big eyes, just as they are today.
Charlie was always Charlie. Beautiful, big-headed, autistic, my boy.
Charlie was born at the Missouri Baptist Medical Center in Town and Country, Missouri, a suburb of St. Louis; you can see the Center off of highway 270. His first home was in an apartment in another St. Louis suburb, Kirkwood. We soon moved into a house in University City near the Delmar Loop (home to Blueberry Hill where Chuck Berry sometimes still plays); it was the house of a professor friend who was spending the year in Hong Kong (and whose sheet-covered furniture took up the better part of the basement). I had left my job as a Latin teacher at a private school and, aside from teaching a Latin class at a local university, I stayed at home with Charlie for all of his first year. I spent every moment with Charlie who soon missed numerous developmental milestones, though sort of doing enough of some (eating solid foods even if he ended up wearing most of his asparagus, using a pincer grasp, sleeping through the night) to lead more than a few people to say “all children develop at their own rate, those milestones are just averages, every child is different.”
Charlie had no balance: When I set him on a toy car, he fell right off. Charlie did not roll over on his own until he was nine months old: When I set him on his stomach as directed by the pediatrician, he howled, howled, howled, sniffed, whimpered, and lay with his face flat on the carpet until I came to pick him up and set him on his back (after a long spell of carrying him). Charlie folded one leg until his derrière and propelled himself with his two hands all over his house, long before he crawled.
It would not have been easy to receive an early autism diagnosis, but I think it would have been a good thing in the long run. (Charlie was diagnosed when he just over two years old.)
I read plenty about possible causes for autism but no one explanation fits with our experience with Charlie. Dealing with the day to day of life with Charlie has always occupied much more of my time and thoughts, rather than returning again and again to considerations of what, what event, what thing, what cause, made him become autistic?
There is autism on both sides of Charlie’s genetic background. As we spend our days with Charlie, Jim and I see ever more and more of both of ourselves in Charlie. Charlie likes to spread out all of his choice possessions—books, ball, blanket, bear, train schedules, —-in a total floor mosaic, just in the same way that Jim has laid out some twenty-plus manila folders of xeroxed documents containing the research for his book on the New Jersey/New York waterfront all across the living floor, the better to see what they have. Charlie, and I too, prefer to to have some predictable structure to our days (so that school days can be more attractive than vacation.)
A passage from an essay, Darwin’s God on the question of “why do we believe in God?” and evolutionary biology in the March 4th New York Times Magazine, notes this about the human need to understand the causes of things:
The human brain has evolved the capacity to impose a narrative, complete with chronology and cause-and-effect logic, on whatever it encounters, no matter how apparently random. “We automatically, and often unconsciously, look for an explanation of why things happen to us,” [psychologist Justin] Barrett wrote, “and ‘stuff just happens’ is no explanation. Gods, by virtue of their strange physical properties and their mysterious superpowers, make fine candidates for causes of many of these unusual events.” The ancient Greeks believed thunder was the sound of Zeus’s thunderbolt. Similarly, a contemporary woman whose cancer treatment works despite 10-to-1 odds might look for a story to explain her survival. It fits better with her causal-reasoning tool for her recovery to be a miracle, or a reward for prayer, than for it to be just a lucky roll of the dice.
Ngin-Ngin, my grandmother—-until she got too old (she is 101)—used to like to ride the bus up to Reno to try her hand at the blackjack table, where she was a not infrequent winner (she does not know English, or that was what the dealers thought). Likewise, whatever roll of the dice or shuffle of the cards gave us Charlie, I have been glad to take the hand I have been dealt, and to make the most of it. Ngin-Ngin, and my Yeh-Yeh, her husband, and my mother’s father and his parents, came from China not knowing at all what to expect in this Land of the Golden Mountain: They may not have been the happiest with what they were given, but they shrugged, they got their hands dirty, they worked hard and slept little—-sewed parachutes, opened a store in Oakland’s Chinatown, owned a laundry, studied engineering at Cal Berkeley—they saved and spent as needed, they wiped their children’s faces and always put bowls of steaming rice and dong gua soup and steamed eggs with a bit of pork mixed in, and they did well.
It is a good tradition to have inherited, and for Charlie—my son; autistic; half Irish; half Chinese—to have come from and, as he grows up, to become part of.
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POSTED IN: Asia, Autism Organizations, Cause, China, Classics, Environment, Myth, Religion, Science, Treatment
9 opinions for Why I Don’t Worry About Causation
Judi
Mar 4, 2007 at 9:29 am
I read plenty about possible causes for autism but no one explanation fits with our experience with Charlie. Dealing with the day to day of life with Charlie has always occupied much more of my time and thoughts, rather than returning again and again to considerations of what, what event, what thing, what cause, made him become autistic?
This is exactly how I feel about our Andrew…I feel that spending time wondering about causes takes precious time away from Andrew and of course my other two boys. Excellent post…thank you, it sums up my thoughts quite nicely.
Rochelle
Mar 4, 2007 at 11:17 am
Beautiful post, Kristine. I always feel a tinge of guilt if I spend more than 2 seconds worry about what caused Tobey’s autism. Like I am somehow searching for “what happened to him” instead of celebrating who he is. Like there is some *other* perfect child out there and I’m here looking for this perfect child. And, I really think that if I found this perfect child, I would really miss the one of I have now. I would deeply mourn the loss of my beautiful, caring, wonderful autistic child.
One thing that I’m reminded of you in your post is how much this forum has allowed me to see the autistic behaviors in myself. If autism is a spectrum, then we all are on it in some degree, I would argue. We’re all a little autistic. I can’t watch soap operas or Judge Judy because I don’t like emotionally intense moments like that–something I now try to remember when Tobey covers his ears while watching television. And, I can’t focus on a conversation if there’s a radio or television playing in the background. Something I try to remember when Tobey’s fixated on a mirror or his reflection in the grocery store floor. I think I see more of myself in Tobey and it makes me more compassionate and Tobey’s behaviors suddenly make more “sense.”
mcewen
Mar 4, 2007 at 11:20 am
Likewise on both counts.
Cheers
MARIA LUJAN
Mar 4, 2007 at 11:47 am
Hi Kristina
My experience with my son was totally different.However, I share with you many of your feelings to your son related to my son; although I try to maintain the balance
1-It is important to know about collaborators because I have a daughter and I want her to be aware of what autism is and if there is viral/bacterian or other considerations to take into account in terms of pregnancy or development of future children of hers to avoid them health problems.
2-It is not important to make me unaware of the experience of the human being my son is. He is today such as he is.
3-It is important to detect concomitant medical problems that can hinder his optimum health and development
4It is not so important that hinder me or my husband to have a very happy, communicative and plenty of shared moments with our son.
As always, it is the daily struggle of research,further knowledge and analysis and consideration of the little and not so little things/moments in the search of equilibrium that I appreciate the most.
Harold Doherty
Mar 4, 2007 at 2:38 pm
Trying to understand what causes autism does not have to detract from enjoying or accepting your autistic child.
The two are not mutually exclusive. Nor are trying to cure your autistic child and acceptance. Nor are trying to educate your autistic child and acceptance.
Bernie318
Mar 4, 2007 at 3:26 pm
When I think of the causes of autism I think of an older family member who has Down’s syndrome. His mother had rubella when she was pregnant, which caused it. This was in a time and place that this could not have been prevented. Now, sure, that wouldn’t happen (but wait, some people aren’t vaccinating their kids)… but anyway, everyone loves him. No one blames the mother. He is what he is, and interestingly, there is no doubt the cause of his condition. He is part of the family, and is loved. I know other friends with children with various chromosomal disorders, too, and there is none of the controversy as there is with autism. It just simply happened (according to the way they feel), the dice rolled and some of the genes came out differently.
Kristina Chew, PhD
Mar 4, 2007 at 4:49 pm
I don’t think trying to find the cause of autism and focusing on the day to day demands of educating a child are exclusive. Some writing on autism seems to get a bit overly focused on the “cause” question.
MARIA LUJAN
Mar 4, 2007 at 6:15 pm
Kristina
I do think that you went to , IMO, the core of the question:
Focusing on CAUSE(s)/CURE(S); implying that everything is about this and to discuss everything published in scientific literature or in the media with this idea to support or to debunk is for me a real problem- supported by the media, and cultural and personal and organizational and so on- ideas.
And WHY is almost everything environmental ALWAYS discussed as CAUSING autism or NOT- beyond the known viral causes during pregnancy-CMV, rubella? What about the biochemical, metabolic , etc effects that environment can have in an autistic person, whatever the age, not as CAUSE but a consequence of genes expression?
The focus should be the autistic person that can have (and many have) true and real problems (medical, emotional, educational, physiological, pshycological and social) and needs.
At least my son has.
And I am waiting for the needed science and for another kind of discussion, honestly, where acceptance and biomedical are not exclusive or opposite, where education and accomodation are not absolutists and where advocacy for respect and dignity for autistic are not considered privative of some approach- because many of us advocate for our children´s rights dignity and respect every second of our days.
Genes, Activism, and Why We Still Have the Push Mower
Jun 4, 2007 at 1:58 am
[…] and “environmental trigger” whenever I had to offer an opinion about the causes of autism. It seemed best, perhaps because less taxing on my thoughts, to leave the autism activism […]
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