Mind of an autist (who knew?)

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[T]here is nothing more important than our personal experience. There is no greater contribution we have to make – no measurement, no theory, no pretense of objectivity – that can compare in value, in uniqueness, in authenticity, to an account of how we have experienced the world. Such accounts, precisely because of their frank subjectivity, invariably produce the highest truths.      scientist quoted by Melvin Konner: Becoming A Doctor

I might have been diagnosed autistic in high school, if anyone besides Dr. Kanner knew much about autism in the 1950s. I got high grades on all my sophomore aptitude tests except verbal facility (49th percentile). I never enjoyed talking to people or telling stories. When people spoke to me, I usually watched their mouth instead of their eyes, which were so distract-ing.

Intense world” describes it pretty well. So many people, everyone wanting/needing/demanding attention. So many communications via words and eyes, so many double messages. Who wouldn’t want to turn away?

I go inside, keep my attention inward to avoid seeing so much, reacting so much, and having my reactions noticed. I’m not thinking when I slip inside, just feeling, being self-aware. I miss a lot of the outside world, though. If I had my druthers I’d be a nature photographer, live by a mountain stream, keep my attention on the astounding breathless beauty of our incredibly physical world and its creatures. But I’m more scared of the cougars here in central Oregon than I am of the people.

Temple Grandin described how terrified she was as an adolescent. I wasn’t scared in high school, but I played lots of sports. I lived at a boys’ home in Chicago on half a city block of land. We had a softball field, a baseball field, and a full-size indoor basketball court next to the main building. We had a baseball team in summer, a basketball team in winter, and just enough players so everyone got to play. I loved it. Every day after school I played ball outside, or pitched to our groundskeeper Walt, who once played pro ball. After dinner I shot baskets in the gym. I hardly ever did homework; high school was a piece of cake.

The other guys at the home didn’t like me much. I didn’t hang out with them, or talk to them much. They knew I was smart. Smart-mouthed, some would say; I couldn’t control my tongue (still can’t). Once when we were putting our baseball team together, one of the dorm leaders said he didn’t want to play. “Chickenshit” I blurted. Big mistake, which I paid for later.

The boys’ home had its own camp at Twin Lakes in Michigan. Every summer we all went there – kids, counselors, cooks, the director and his family. There were lodges and cabins for the younger campers, a tent camp a mile up the shore for the older boys, lots of aluminum canoes to put in the lake. Best of all were the canoe trips down the Pine River in central Michigan every summer. Two and three day trips down this pleasant river, with just enough whitewater to be challenging, sleeping under our canoes, cooking over campfires. . . . It was grand!

The good old days. Not so good any more. Now I’m a recluse, keep to myself, avoid others. I write and study on my Mac laptop early every morning when it’s quiet, listen to music on my iPod, later watch political news on MSNBC and CNN. Cable TV is a wondrous thing for an autistic recluse who loves movies, sports, and politics – my primary contact with the outside world, along with the Internet. I hardly ever phone anyone except my stepmother Helen.

A word on terminology and its significance. I don’t mind calling myself autistic or an autist – I think the words are very apt. I feel autistic, now that I know what it means. I don’t think I have autism, like a disease I caught somewhere. Autistic is a state of mind, a form of behavior. Habitual behavior to be sure, but still behavior.

4/22/12. Pinocchio and Peter Pan. Two of my favorite stories. The puppet who wanted to be a real boy, and the boy who didn’t want to grow up.

4/24/12. Theory of mind? You’ve got to be kidding! I’m reminded of the Peanuts comic strip where Linus pretends to be a polar bear stalking an Eskimo. Who could eat a whole Eskimo? he concludes. Who could possibly know what anyone else is thinking? I like to read minds, a friend pointed out, but all I’m doing is trying to make sense of the curious things people say, do, and apparently believe.

Freud asked “What do women want?” Not the first man to wonder. Women are terra incognita to most men, in awe of their unique natures. They’re like a different species, so unlike how men act, think, and feel. Men are self-centered; women other-centered. The Indian philosopher/guru Rajneesh said it like this: “Loneliness comes naturally to men. For a woman to be alone is difficult . . . almost impossible. Her whole being is a deep urge to love, and for love the other is needed.”

3/25/15. Just sent several hundred emails to attendees at the Autism Research Institute ‘think tank’ in Baltimore two years ago, and practitioners formerly listed on the ARI website. Attached was my self-published paper A critical clue to fever’s dramatic relief of autistic behavior (on this site). Pediatric neurologist Andrew Zimmerman and colleagues presented the clue at IMFAR 2008 –  improvements sometimes appear hours before fever. If anything speaks for itself, that does. Yet 35 years after Ruth Christ Sullivan formally reported fever’s benefit in 1980, NO ONE has investigated what happens in the brain to explain how fever helps so dramatically. The best thing I said in Baltimore was: “You don’t solve a problem by complicating it; you solve it by simplifying it.” Did anyone hear?

11/23/15. Decided to keep an online journal here. Typing so much easier and faster than handwriting – and readily published. Fred Previc suggested I write a blog; didn’t think I had that much to say. But posting a letter to Steve Silberman (author of NeuroTribes) on Manuel Casanova’s blog Cortical Chauvinism, and responding to some replies, showed me how much I enjoy speaking my heart as well as my mind about autism.

Someone responded to my letter to Silberman, and I said “Like a lot of autistic people, I’m very different and very special.” There was pride in that, but also back story (a la Silberman!). I believe I see things other researchers don’t see precisely because I’m not typically educated. My mind isn’t stuffed with thousands of facts and factoids about every biochemical and physiological process in every cell, tissue, and organ in the body. I see things simply partly because I don’t know their complexity. But I don’t think I need to know it.

My overriding point of view is best expressed by the legal phrase res ipsa loquitur – the thing speaks for itself. I’m convinced much of the autism evidence speaks for itself; it’s not rocket science. I had a good high school education, but I don’t recall a scrap of any biology. The really good medical and biological writers, though, aren’t hard to understand. They want you to get what they’re saying. Their abstracts are succinct, often with a quotable line or two, and their discussions clear, thoughtful, and eminently quotable. I use textbooks for reference only; my favorite (of course) being Guyton & Hall’s Medical Physiology.

Many years ago I earned my living for a while repairing early Macintosh computers in Berkeley – mostly resoldering joints cracked by heat; nothing complicated. The best tech there taught me the best lesson – you can often see the problem. But fixing cars, especially their electrical systems, was where I really learned to appreciate simplicity. Automotive electricity on older vehicles is simplicity itself. You either have voltage (electrical pressure) providing current (flow of electrons) through resistance (e.g. lights, motors) to ground or you don’t. You either have strong spark from the coil or you don’t. Your alternator either replenishes the battery or it doesn’t. And so on. Best of all, these events are readily detected with a test light and/or measured with a multimeter.

Some time ago I sent Tom and Ray Magliozzi (Car Talk) a letter, telling them about fever’s dramatic benefit to improve autistic behavior, and asking what they thought might be happening if overheating improved a vehicle’s operation. They never replied – perhaps because I also asked them to request donations for a study of the fever phenomenon at Massachusetts General.

The fever phenomenon, to my mind, is the prime example of the inability of autism researchers to recognize things that speak for themselves. If I were a child who improved dramatically during fever, and old enough to under-stand the risks and implications, I would not hesitate to be scanned by MRS. If I were the father of that child, I would not hesitate to allow him to be scanned. Why then do autism researchers continue to hesitate (35 years after Sullivan’s formal report) to conduct the single study that might identify the biochemistry underlying the differences between ‘normal’ and autistic behavior in these children?

Andrew Zimmerman (MD) warned about brain overheating from the scan, and contagion. But Martha Herbert (MD/PhD) reported a child whose improvements lasted weeks after temperature returned to normal – thus unlikely to be contagious or overheated. One child like this might be all that is necessary to identify the salient differences in brain chemistry. Glutamine released from skeletal muscles? Tryptophan carried into the brain by high glutamine?

A retired autism researcher told me recently: “Researchers aren’t paid to cure autism; merely to research it.” Is that the real problem here?

October 23, 2016. Re-reading Simplifying Fever for the umpteenth time, I realized I'm making a simple argument. There are two 'weakest links' in autism – (1) low brain blood flow, and (2) immature overhydrated brain myelin (doubt anyone would disagree, though they might add low brain serotonin or overactive amygdala). 

Because fever often makes these kids almost normal for a time, it must reverse or compensate both impairments! Because brain blood flow increases when metabolism increases from epinephrine and heat, that aspect explains itself. The really challenging question is how does fever reverse or compensate too much water in brain myelin?!

Is it any coincidence that glutamine and taurine, the primary free amino acids in skeletal muscles – and primary organic brain osmolytes – are released from muscles (and brain?) hours before fever's onset . . . res ipsa loquitur