(Continued from Part I HERE)
In a sense, my family ended up in the US more than a century ago to avoid “asshole poisoning”, as Robert Sutton calls it in his book, “The No Asshole Rule” ( HERE). After the Russian invasion of Finland, the Cossacks tried to forcibly draft my great grandfather, who, despite his age, was valued as a horse trainer and soldier. But he wouldn’t follow orders—in Finnish this is known as “sisu”. Even under threat, he had no interest in raiding neighbors or attacking shtetls, so he took a row boat across the Gulf of Bothnia to Sweden and then bought passage across the Atlantic. He sent for my great grandmother, who left the land to their six adult children and then gave birth to my grandfather in Massachusetts at the age of 50. The refusal to capitulate may have set the tone for a few generations.
Perhaps because, like the children of Robert Kearns—the real life protagonist of “Flash of Genius” (HERE )—, my uncle Bob’s interest in corporate “game changing” arose in part because his father’s career had been darkened by theft of intellectual properties, my uncle had a drive to protect the input of creative idealists. In any case, he and my uncle James harbored some parallel views on management philosophy and fed each other’s convictions. Both loved Cervantes and frequently used Don Quixote as an analogy for the “impossible dream” of changing the rules of commerce. My uncle Jimmy co-authored “The Garbage Can Model” of “anarchic” organizational structures such as academic institutions; and my uncle Bob developed his own “anarchic” model to launch a fluid power corporation that went on to control a quarter of the world’s market for more than thirty years and survived crash after crash. What linked the endeavors and defined “anarchic” in the sense limited to management was an exploration of keeping the jerks out, the output quality high and the creative collective happy and productive: a twist on achieving the “greater good” through valuing the individual. The “rule” was all.
It would be hard to describe the impact of walking into one of my uncle’s plants on those used to the typical corporate model. You’d think my uncle was Willy Wonka, but he looked like any other executive and nothing seems amiss in the facility at first; except he had no ebony-line office and neither did others in management— everyone in the company has identical cubicles. There was a noticeable lack of kowtowing, gesture warfare and ring-kissing and my uncle couldn’t have been happier about it: he had envisioned a company which could function perfectly without him after he retired. There are no titles except one: plant manager, for the person who waters the hundreds of ferns hanging over hermetically sealed machinery. And later one would find out that the exterior grounds weren’t a result of naturalistic landscaping: the original American plant had special approval to build on a nature reserve because it polluted neither inside nor out. The importance of removing ecological impact was another family think tank development: something my uncle had gleaned from his and my mother’s step-sister, a professor of botany at the University of Wisconsin. Aside from thousands of other applications, the company’s components are now in the majority of wind turbines in the US and Europe. In the end, they conquered the windmills.
Because my uncle was a philosophy major who became a patent-holding engineer before becoming an executive (and designed the blue prints of his own plants and software), the company’s policy was to allow anyone from any department to wade into the problems of another if they thought they had something to contribute. Having already passed the years-deep vetting process before hiring, employees were given enormous freedom. Engineers would problem solve with company attorneys; software people would join a group of engineers; executives would wander among machinists if they had a sudden revelation about how to meet a particular challenge— and anyone at any time might suddenly wander about the facility for a few weeks between deadlines on an internal study sabbatical to keep abreast of new developments and the larger picture or going on a tangent to pursue an idea. And when deadlines loomed, management disappeared because a self-motivated work force can do without hovering— and because a self-motivated work force apparently produces the highest quality outcomes. They also don’t tend to sell out. The company used to let industrial spies into the plants just to laugh at them. The only thing a spy could come away with was a business model they were more than welcome to, but which they weren’t likely to adopt.
If anyone’s imagining a geek retreat, forget it. I was always surprised by the lack of pocket protectors, indoor rollerblading or glowering power-nerds in ironic glasses.
Though I had no interest in going into business, organizational psych or engineering, when I started my own company at a theater I managed in Los Angeles, my uncle gifted me with some cryptic statements. Some of them took me a few years to absorb:
Vision is everything. Write it down and don’t stray from it.
Perception is stronger than truth. It may or may not actually be truth, but perception can still get you (I still have trouble with this one).
If you want to remain innovative, don’t steal (true—poaching is the surest way to convince yourself you’re incapable of doing anything original).
People who try to operate with integrity will always be targeted by those who lack it: if integrity succeeds, it collapses the dog-eat-dog credo and the rationales of those who operate under it (weirdly true).
Don’t promise more than you can deliver (or much less either).
The sign of a successful operation is that people laugh a lot (just not at injured children).
Stay away from bullies and hip-shooters, no matter how brilliant they think they are. They always destroy more than they create (except Steve Jobs, but the exception proves the rule).
If you haven’t gone down the wrong road in life, you haven’t lived.
That last bit of advice was because my uncle couldn’t comprehend why I’d want to go into one of the most cutthroat fields on earth (many of Sutton’s real life examples come from the entertainment business for a reason). When my husband and I decided to have children, I figured out that experimental theater doesn’t pay enough to hire nannies and dinner at midnight doesn’t go well with parenting. That is, unless you’re a vaccine injury parent eating over the kitchen sink after a day of tantrums and vomiting. But back then I had no clue what was in store.
My uncle and my husband became close before my uncle’s death. They had a natural affinity despite different political leanings: both were architects and my husband’s father, an Argentine screenwriter exiled during that county’s “Dirty War”, happened to be a Cervantes scholar whose film on Don Quixote is now archived in the Argentine National Library. I was a third wheel in some of these conversations, but their bond made me happy. They once talked about the times my uncle—a lifelong fiscal conservative—had been called a communist by corporate rivals who were concerned the bar for workplace fairness might rise. My husband, big expert lefty that he is, was shocked and said, “But you’re not a communist at all, you’re an anarchist!” “Exactly!” my uncle exclaimed, though he preferred to call it “pragmatic radicalism”.
I’ve seen some commentary lately that the international drug trade is an “anarchic business model”. I think this is confusion with “social choas” and makes no sense, since drug cartels, much like Big Pharma, are structured on the clear division in ranks found in typical corporate or military hierarchies. You disagree, you get “neutralized” (HERE). In any event, my uncle didn’t extrapolate the business model to government or law and order: the structure was just what he thought necessary to treat people well, avoid damaging the environment and produce the best work. He intentionally limited it to his corner of the world; simply part of his efforts to “leave things better” than when he found them. And he did, in many ways.
Before the age of one, I couldn’t help noticing how our son seemed like a perfect amalgam of my husband and my uncle, how he studied the way things worked like his great uncle and dad had as kids. Even after he began to look more like his father, our son still had the same bust-a-gut laugh as my uncle and he’d wail if his twin sister fell down or lost a toy. He was a fixer and rescuer like so many in the clan. When our daughter was shaking from a high fever after the one year shots, her brother pulled a blanket around her and tried to pat her back. We’d come to think of things like this as a characteristic of our son, but it was many years before we’d witness a gesture like that again: both children began to regress shortly afterwards and their resemblances to other family members—and their resemblance to themselves— began to fragment. While my uncle was a master of communication, married the love of his life, raised children, had many close friends and more than 400 people attended his memorial, my son still struggles to understand what people are saying to him. Then again, my uncle had only a few vaccines after age two and my son had more than 30 by the same age.
Only the critics of recovery need to be reminded that we love our children as they are at every moment, in sickness and in health. No one in either of our families was ever a clone of anyone else and my husband and I weren’t suffering from a sense that our kids were supposed to walk in the shoes of their elders. But there was a stockpile of knowledge and experience that the family could have passed on which the world isn’t exactly glutted with— and which the nature of the disorder itself can make difficult to comprehend. Add to this the fact that our children were ill and in pain; the elevated risk of seizures, diabetes, asthma, heart disease; elevated risk of abuse and rape in schools and institutions; the fears of what happens to disabled individuals if their parents die; and the possibility that it all could have been prevented.
On hearing of our twins’ regressions, my uncle Bob apparently did some research and announced at a family Christmas gathering that chelation had been practiced since WWII and was safe and effective under experienced medical supervision. He never explained how he put two and two together: the twins had just been diagnosed and we hadn’t yet shared the full extent of the bad news. But he knew before we did.
Was my uncle “antivaccine”? Hardly. He was an expert in metals. The plants’ machinery wasn’t hermetically sealed simply to protect the components but also workers’ health. Aside from his other accomplishments, he’d been a marksman in the military and held the world record for the 300 meter event for over 20 years; he knew the effects of and treatments for handling lead ammunition. Sadly, in spite of all his knowledge, it turned out the rare and rapidly metastasizing cancer which eventually killed him may have been associated with the amalgams in a recent joint replacement. The family never agreed on this point, but I suspect he researched childhood exposures in the course of researching his own. Perhaps he learned that metal sensitivity might run in families. Most of all he was also an expert in what can result from poor business practices.
The year before my uncle died, we discussed excessive vaccination and the thimerosal/viral theory with him outright. He nodded sadly and talked about the Ford Explorer/Firestone tire fiasco as our son, still at a difficult point in regression, climbed into his great uncle’s lap and parked himself there for a time. Together they made a sort of twisted circus mirror tableau of cross generational resemblances and a human scale of how much can be lost. I knew even the painful moments were numbered and forced myself to take a mental picture. It felt like I was cupping my hands around liquid to keep it from spilling off a surface; my son and my uncle were melting away like sugar in the rain, but the vision couldn’t die. Though we don’t believe the twins’ autism was inherited, you could say their recoveries were.
After we’d began treating the twins for a host of environmental injuries-- including acquired mitochondrial disorder, glutathione deficiency, damaged GI tract, clinical metal poisoning, acquired allergies, inflammation and the rest-- our son went through an alteration in such a short time that we were stunned. His twin sister’s “gifty” status had been apparent prior to regression but then was exaggerated afterwards. Her recovery has been generally more subtle.
We knew who our daughter was before she was born. She played jokes on us and imitated sounds at four months, said her first words at seven months, invented songs, laughed at the slightest play in our expressions. She was Boo from “Monster’s Inc.” Then, like her brother, she began to change after the one year vaccinations, including full thimerosal flu shot. Language stopped. Instead of just precocious, our daughter began to read spontaneously at age two and do short sums; but she couldn’t speak in a sentence, respond to her name, follow a direction or potty train. Diarrhea shot up her diaper to the back of her neck at least a dozen times a week; she lined up objects, had violent night terrors every night and an average of fifteen tantrums a day.
Because of her gifts, some might have been happy to leave our daughter as she was post-regression, thinking she didn’t require recovery efforts or fearing that these might compromise her specialness, but the “family lens” was applied to her too. We didn't believe her gifts were "conferred" by autism but rather were what had made her more susceptible to injury in the first place— though between Tylenol, coal-fired power plants across state lines and illness at the time of vaccination, we can all take our pick of facilitating factors. Still, we weren’t alone in suspecting savantism had a certain explanation. In his 2008 article “Living with Asperger’s” (HERE ) Age of Autism contributor Jake Crosby wrote: “The pro-Autism party tries to claim that Autism makes people intelligent, when it's entirely possible that Autism's environmental triggers tend to affect those of high intelligence.” Then in a Huffington Post article, David Kirby highlighted a potential connection between toxic susceptibility resulting in autism and an otherwise mostly benign "mitochodrial fragility" found among gifted individuals (HERE).
Some things must have skipped a generation in our family: I can’t make change. But I was always able to visualize how things work. On a sort of mechanical theory of savantism and brain metabolism (my counter-genetic response to the“real estate” theory of Einstein’s brain HERE )-- if you cut power to every part of a car except the two rear wheels, theoretically those wheels could spin at a gadzillion RPMs. Because of family background, we knew our daughter’s gifts were native, though we were convinced the exaggeration of them was a symptom of damage: she was literally spinning her wheels without getting anywhere until she was treated for environmental injuries, at which point the “wheels” began spinning at a more normal speed as other parts of her “engine” began working again and using their share of fuel.
As a side note, by including Steven Pinker's theory, I'm not advocating the idea that Einstein had autism. I actually doubt he did, though dead celebrities are used to sell mugs and mouse pads-- why not diagnoses? Especially when industry is trying to fill in the missing “adult cohort” to make it seem as if autism has “always been around”. I suspect Einstein, if anything, may have represented the “raw material” for the epidemic. In the case of the autism that struck our twins at least, the virtually meaningless exaggerations of inherent gifts was acquired and toxically derived.
At seven, after four years of treatment, our daughter now reads on a fourth or fifth grade level; math is her favorite subject, but no, she’s not visualizing Pi and that's fine with us. All systems are basically operational now instead of just a few. She's making up for lost time in the development of more "intangible" aspects of human character, such as compassion, originality, sense of humor, the subtleties of language and imagination. But her capacity to empathize and relate socially had never been completely wiped out and the real recovery shock came from her more severely injured brother.
For all the things that aren’t genetic, some things might be a mix of nature/nurture: aside from an explosion of language within days of starting biomedical treatments, our son seemed to pick up where he left off at age one and began to build elaborate original structures and, better still, his sense of humor, sharing behavior (“Daddy, daddy, c’mere and see the trains!”) and traces of family compassion came back. We call him the “EMT’ because he rescues kids who fall off their tricycles, returns toys to crying babies, patting their heads and saying, “It’s okay little baby”. He likes to leave things better than when he found them.
It’s funny that only recovery from this supposedly genetic condition was able to bring back family traits. Our twins aren’t out of the woods yet, but recovery brought about a refurbishment, a sort of “sea change” and we can only keep going. I only wish some could have lived to see what they knew was possible.
Full fathom five thy father lies;
Of his bones are coral made;
Those are pearls that were his eyes;
Nothing of him that doth fade,
But doth suffer a sea-change
Into something rich and strange. ~William Shakespeare, The Tempest
For a period of several years, my uncle presented at Harvard Business School when his company was the subject of graduate course study. My husband attended the second to last presentation a few years before the crash. During the discussion, a graduate student asked my uncle what was wrong with business in the US. My uncle answered, “Harvard Business School”. That got a big laugh but he was serious and explained. He’d predicted the current economic collapse more than ten years before; that the US was headed for an economy like England’s after WWII and that at the root of it would be the incompetent, dangerous business models taught in leading schools. He wasn’t the only watchdog sounding the warning in those years, but not too many heard.
Though he never had the chance, my uncle Bob had always intended to write a book about the ethical climate in commerce. During the recent conversation with my uncle Jimmy, he said, “Maybe one day you’ll write it”. I said I wasn’t equipped and he chuckled mysteriously, as if I’d missed the whole point. I may write other things and I suppose I’m gathering field experience jousting the epidemic. I wish I wasn’t and I wish none of us were. But it’s the same windmill others have fought.
To restate the obvious, the epidemic never had to happen. Not for the greater good, not even for the sake of success of a minority of jerks among pharmaceutical profiteers, global polluters, regulatory and media opportunists— and certainly not for the sake of the US economy. There was another way these industries could have gone and lives have been wasted for nothing. Only to those responsible is this loss meaningless though, because it was unnecessary. The losses will never be meaningless to us, which is why we have to fight back and fight hard—and avoid the poison.
Adriana Gamondes lives in Massachusetts and is a contributor to Age of Autism.