2013, Kristine Barnett
Suggestions for Kristine and Jake Barnett:
1) Please, Kristine, while your memories of John Henry are still fresh, write them down. Ask a family member (Stephanie?) to write a biography. Jake was not attentive during John's final years, and when Jake approaches that age, his great grandfather will be able to guide him, and you and Stephanie will no longer be available to help in person.
2) Kristine and Mike, get a 23andMe gene test. $100 for 3 million SNPs, and they save your sample for a full sequencing when that becomes affordable. That will be a life saver for your kids and grandkids.
3) Purchase Guy Consolmagno's books "Brother Astronomer" and "God's Mechanics" (or ask and I will send them to you). Jesuit brother Consolmagno is an astronomer, manages the Pope's meteorite collection, hangs out at science fiction conventions (the brothers have quite a collection), and is one of the most intelligent and affable scientist/Christians I know. Not Amish, but his brotherly community comes close.
4) Look into the American Scientific Affiliation, a group of scientists/engineers who are also Christians. I am not a Christian by the accepted definition, but was an affiliate member for years (they also accept non-scientist Christians as affiliatess, that means you, Kristine). A wonderful group of people.
- 5) Jake is exceptional in his distribution of mental assets, and timing in life. He uses more brain cells to think intellectual thoughts, fewer to react to social situations. So he was in some ways a 30 year old self-tutored scholar when he three, and may be a fully integrated mental teenager when he is 30. Except the raging hormone thing is happening now.
5a) So, plan on crises and adolescent angst popping up at unexpected times though Jake's young adulthood. Life-threatening stuff, potentially. The world is not kind to exceptions.
6) Have Jake get a careful hearing test, with no visual cues. I also had childhood ear infections. I developed a partial hearing loss in my left ear - and was smart enough to compensate through other cues, most times. Sadly, one of the ways I compensated was to raise my hand when most of the other kids did, though I did not hear the teacher telling us why to do so. That hearing loss became tinnitus, a very loud hiss, but I just tuned out the left ear, and did not learn that my hearing was abnormal until I was in my 20s. Perhaps Jake also has a hearing loss that he compensates for.
7) Jake is coauthor on one paper, but no other public writing that I know of. A good scientist is not only smart and clever, but writes clearly so others can learn from him. It is past time for Jake to write informally about his ideas, his experiences, his desires. You can set up a wiki website like this one, and limit read access to a few people by default, until it is ready for public consumption. Temple Grandin gets help with her books, Jake can profit from her examples.
- 8) Many autistic people are very sensitive to light flicker - their brains do not "process out" the variation. Different light varieties have different flickers, and the autistic brain's sensitivity to this flicker is probably waveform dependent. Among the autism spectrum community, there are electrical engineers who can design a flicker meter which measures and characterizes this waveform, not as some standard number like peak-to-peak or root-mean-square amplitude, but actually calibrated to the perceived discomfort. If the behavior of the camera on a smart phone can be modified in software to sample light at high rates rather than merely make pictures, it could be used to identify offending light sources before getting close enough to them to trigger discomfort. Note, this would also be very valuable for movie making, where the variation in light levels through an AC cycle will get captured on film.
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:
- 1) Different allocation of brain resources. The neurotypical human brain is optimized for learning subtle social cues; science and math normally operate on the fringes of this enormous capability. Jake used most of that brain capability for abstract thinking. Which is wonderful, but socially crippling.
- 2) Missing brain resources. The social brain hardware is missing, but nothing useful took its place.
- 3) Sociopathy. The social brain hardware is available, but used for exploitation of others, not collaboration.
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 addall.com 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).