The Spark

2013, Kristine Barnett

Suggestions for Kristine and Jake Barnett:

I enjoyed this book, about the "autistic" Jake Barnett, and his mother's struggles to connect him with the world. The book is well written; although the book does not mention it, and there is no "thanks to" section for editors or agents, I presume Random House provided extensive editing and perhaps a ghost writer. Which would be both good and bad - I would expect an editor to do fact checking ("IQ higher than Einstein" ???) but also skirt the edges of the facts to make the book more enticing. I wish there were a few more details like this.

The book is a memoir, not a scientific treatise, and people who complain about accuracy should learn more about fallible human memory in general. Oliver Sachs, no fool about psychology and human frailty, told me about his childhood memories of the bomb shelter in his family's London back yard during the Blitz. He remembers being in that shelter during an air raid, but he also has documentation that he was evacuated to the countryside with many other children. Memories do the darndest things, which is why I write public documents on my website about things I want to remember. And I do want to remember this book.

Ms. Barnett has lupus, and describes a ridiculously full schedule in the book. I fear that her lupus is exacerbated or even caused by overwork; I share her neglect of sleep but I know of the physiological and immune system damage that the lack of sleep causes. That is when the body schedules cell-level cleaning; for example, the brain actually shrinks during sleep, expanding the channels that diffuse debris out through the intra-cerebral fluid (it is not directly pumped like blood). If the debris of old cells builds up, perhaps macrophages are accidentally trained to eat it, and then the cells themselves. We do not understand the immune system very well.

Autism seems to be at least three very different conditions in one catch-all category:

A person with (1) can train themselves with models of the world, and deal with other people algorithmically. I think this is what Temple Grandin learned to do, and it is what I do to some extent.

Someone needs to write a handbook: "Algorithms for Autistics", mental tools and practical procedures for reading autistics that simulate a neurotypical. The type one autistic will always be "odd", but no more than necessary.

Many great programmers and artists are autistic spectrum. Now that computers are ubiquitous, there should be computer programs that any parent can use to interest and teach their autistic children (of all different subvarieties). If a child like 2yo Jake wants to stare at something, a screen with patterns might help provide a path from the outer world to the inner one. Jake learned because Kristine helped him find that path; 95% of the other Jakes out there are not that lucky. For everyone's sake, we need to partly automate the process, so a non-educator can initiate this process.

Indeed, the book implies that most rule-bound and unimaginative educators cannot think beyond forcing the autistic kids into a poor approximation of "normal". Kristine may have wanted that too much. Jake does not /need/ to be normal, he needs to be Superjake, the best and most fully developed Jake he can be, unencumbered by most of the nonessential social makework that occupy most people's time.

Autistic people have different sensory filters. Perhaps all children are sensitive to lights, loud sounds, unexpected touch, and most learn very quickly to stop reacting. Autistic kids learn other things instead. Perhaps an environment structured for an autistic person's comfort will be subconsciously more comfortable for others, too.

"Ms. Right" for Jake may be hard to find - but he will find her, learn to enjoy her touch, her laugh, her way of seeing the world. There is a teenage girl out there, out of the tens of millions of teenage girls around the world, who will be ready for him when he is ready for her. How will he find her, and she him? It could take a while, and "ready" will take a lot longer than for most other people. Perhaps Aunt Stephanie the matchmaker can think about this, and provide some algorithmic templates for Jake to develop into a "supernova search". Knowledge of what worked for his great grandfather might help.

The first few chapters, about the unexpected developments in Jake's mind, were aggravating ("oh no, our little boy is broken") but turned out wonderfully a few chapters later as mom developed wisdom. I so wanted to tell inexperienced Kristine and Mike how absolutely lucky they were to have a different kid than most others, and that their daycare and two future sons would give them all the neurotypicality that any conventional parent could ever want. I did not have kids, but I would prefer a Jake to an Ethan, and my wife the doctor might be a great mom for medically-challenged Wes. As Mike and Kristine grew, they learned how to be great parents for all of their sons. I wonder how many other parents of high-function "autistics" ever move from disappointment to celebration like these parents did.

The Barnetts are literate, but they may not be fanatic "book household". They often lack money, but they buy new (if remaindered) at Barnes and Noble. There is for finding old/odd books. Plenty of small used book stores with oddball stuff. Many public libraries have sale areas. Most used book stores would be more comfortable (quiet, dim) than the big chain stores, and the used book stores in university towns would be more likely to have the books he likes than the mainstream stores. Halfprice Books has four stores in Indiana, though it is more "Barnes and Noblish" than most dingy little hole-in-the-wall stores, of which there seem to be dozens around Indianapolis.

I don't know about good used bookstores in Waterloo/Kitchener, where the Perimeter Institute and the Barnetts are for now. Toronto is 100 kilometers away, too far for a book shopping trip.

Astronomy is fascinating, but the New Thing may be transferring observation and calculation techniques to and from molecular biology. As solid state circuits scale down to atoms, it will be a three way interchange. Jake should learn all the techniques he can in physics (though the theoretical extrapolations they do at Perimeter may have far outstripped the range and quality of usable data in cosmology and particle physics - they are painting dragons beyond the edges of the map).

TheSpark (last edited 2015-01-17 02:13:47 by KeithLofstrom)