Latest book obsession: autism

An Incomplete Autism Reading List

snow on windshieldWhen beginning a new story, I tend to go through periods of obsession with my reading. Race relationships in Chicago, cults, female veterans from the Iraq war, and so on. My latest reading kick is about autism. In part because my second grade son got diagnosed as being on the spectrum a few months ago and I really want to understand how he sees the world–meaning I want to understand why the world bothers him so much but also what he finds beautiful in it– but I’m also working on a story that happens to be about an 8-year-old son (or thereabouts) who is on the spectrum. (The above picture, by the way, was taken by my little guy.)

The books on autism I’ve read so far have been engaging and insightful, and it’s a relief to often see my son within their pages. The process of finding out what those with autism find beautiful–trying to understand how differently they see the world–has also just been very moving to me. I think some of us who are outside whatever spectrum of normal exists, whether by choice or not, can relate to the feeling of otherness that keeps surfacing in these accounts. In several books, I’ve read comparisons about how those on the spectrum feel like they’re visitors from another planet, or visitors from some other time, and I’m not trying to belittle the struggles that people with autism face, but I imagine many of us can relate to such feelings. Take this passage from Daniel Tammet’s worthwhile memoir Born on a Blue Day: 

“I liked spending time among the playground’s trees because there I could walk up and down, absorbed in my thoughts, and not worry about being pushed or knocked over. As I walked, it felt for brief moments as though I could make myself disappear by standing behind each tree. There was certainly no shortage of times when I felt like I wanted to vanish. I just did not seem to fit in anywhere, as though I had been born into the wrong world. The sense of never feeling quite comfortable or secure, of always being somehow apart and separate, weighed heavily on me.”

Otherness sucks in a lot of ways, of course, but it also allows “the other” to witness or notice things most people can’t see. My favorite parts of Tammet’s book was where he describes his ability to recognize a beauty that probably isn’t accessible to the rest of us–a beauty in numbers, for instance, or in silence. This is what I hope for my son: that in addition to all the struggles he has to face, he will get to experience his own moments of contentment, satisfaction, and beauty, and in those moments, he will feel such emotions more intensely and fully than I ever will be able to. 

”There are moments, as I’m falling into sleep at night, that my mind fills suddenly with bright light and all I can see are numbers—hundreds, thousands of them—swimming rapidly over my eyes. The experience is beautiful and soothing to me. Some nights, when I’m having difficulty falling asleep, I imagine myself walking around my numerical landscapes. Then I feel safe and happy. I never feel lost, because the prime number shapes act as signposts.”

”I became an increasingly quiet child and spent most of my time in my room, sitting on my own in a particular spot on the floor, absorbed in the silence. Sometimes I’d press my fingers into my ears to get closer to the silence, which was never static in my mind, but a silky, trickling motion around my head like condensation. When I closed my eyes I pictured it as soft and silvery.”

“Everyone is said to have a perfect moment once in a while, an experience of complete peace and connection, like looking out from the top of the Eiffel Tower or watching a falling star high in the night sky. I do not have many such moments, but Neil says that is okay because being rare is what makes them so special. My most recent came one weekend last summer at home— they often happen to me while I am at home— after a meal I had cooked and eaten with Neil. We were sitting together in the living room, feeling full and happy. All of a sudden I experienced a kind of self-forgetting and in that brief, shining moment all my anxiety and awkwardness seemed to disappear. I turned to Neil and asked him if he had felt the same sensation and he said he had. I imagine these moments as fragments or splinters scattered across a lifetime. If a person could somehow collect them all up and stick them together he would have a perfect hour or even a perfect day. And I think in that hour or day he would be closer to the mystery of what it is to be human. It would be like having a glimpse of heaven.”

Books on autism that I’ve either finished or am currently reading

“When you see an object, it seems that you see it as an entire thing first, and only afterward do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus. What part of the whole image captures our eyes first depends on a number of things. When a color is vivid or a shape is eye-catching, then that’s the detail that claims our attention, and then our hearts kind of drown in it, and we can’t concentrate on anything else. Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends.”

  • “People Don’t Get Me, Mom“: an essay in Good Housekeeping my mom sent me by Jackie Mercurio. It’s beautiful and hopeful, but as I was telling my mom, so often Asperger kids are portrayed as sad and sensitive in the non-fiction I read. I want someone to write about having an angry and frustrated and even mean Asperger’s kid. (One reason why I am excited to start this new story). In response, my mom sweetly wrote, “I hope one day you can write J.’s story that is hopeful. His journey has just begun and you are in it to win. Keep the faith.”
  • The Way I See It: A Personal Look at Autism and Asperger’s, by Temple Grandin: a collection of brief practical-minded essays
  • The Survival Guide for Kids With Autism Spectrum Disorder (and their parents): J. and I read this book together every other night for a few weeks until he told me this is more my kind of book. I keep it inside my nightstand table as reassurance. 
  • 1001 Great Ideas for Raising Children with Autism or Asperger’s, expanded 2nd edition: I also keep this book by my nightstand, finding it comforting and that this many ideas exist.
  • Temple Grandin (the HBO movie): It’s not perfect but there are many moving moments here relating to Temple and her mom’s relationship. I found the following interchange heartbreaking–the realization that no matter how many books you read, or how many new techniques you learn, or hard you work to be a better parent, there are certain things your child may never learn (like caring how another person feels? like kindness?).

Eustacia: Temple, look at me. Look at me. Do you know how people tell each other things with their eyes? This is me telling you that I love you and I respect you.

Temple Grandin: [long tearful pause] I will never learn how to do that.

Eustacia: I know.

Books I optimistically and perhaps unrealistically hope to read

Why did Middlemarch have to end?

finishing a long novel is really sad

As a reader, to reach the end of any book you have lived alongside for months can be somewhat unbearable. Where do those characters, those people, go? Why can they not stay with you? Though I suppose one must get on with one’s life and read other books, or do such things as laundry. I usually cry at the end of long novels, sometimes because the ending is sad and, worst case scenario, the characters are dead, or sometimes it’s because the book itself is ending and the process of reading it is over. 

In continuing my love fest for Middlemarch, I wanted to write briefly about the ending, which is one of my favorite endings out of any book. First off, it’s sad, of course, it has to be, the point when, in the final chapter, you realize you will need to say goodbye to the town and, more tragically, the characters you’ve grown to love (oh Lydgate). I was listening to the last hour of the book during a long run and I realized afterwards that one should not listen to books that will make you sad while running (hard to breathe there!).

The ending is a compassionate one at least, Eliot allowing you to say goodbye gently as she gradually increases the distance between the reader and Dorothea, the character who she ends the book upon, mentioning first Sir James opinion of Dorthea’s marriage to Ladislaw, then the town’s opinion, then stepping further back to an even grander view of Dorthea’s life. I love how the voice stretches here to become somewhat epic and oracle-like (“For there is no creature whose inward being is so strong that it is not greatly determined by what lies outside it”) then circles back to include St. Theresa of Avila, who opens the book. I also love how the narrator’s voice continues to expand even further to include the reader. “But we insignificant people with our daily words and acts are preparing the lives of many Dorotheas…” And “for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been…” There is irony to me in the final sentence, the talk of “hidden lives” and “unvisited tombs,” as Dorothea’s own life, through the act of the novel, has become extraordinary to us readers, and who wouldn’t lay a wreath of flowers at her grave if given the opportunity.

Below are the last three paragraphs of the ending. Pay attention to the second sentence of the second paragraph, as Eliot revised this extensively over the span of several years.

“Sir James never ceased to regard Dorothea’s second marriage as a mistake; and indeed this remained the tradition concerning it in Middlemarch, where she was spoken of to a younger generation as a fine girl who married a sickly clergyman, old enough to be her father, and in little more than a year after his death gave up her estate to marry his cousin– young enough to have been his son, with no property, and not well-born. Those who had not seen anything of Dorothea usually observed that she could not have been ‘a nice woman,’ else she would not have married either the one or the other.

Certainly those determining acts of her life were not ideally beautiful. They were the mixed result of young and noble impulse struggling amidst the conditions of an imperfect social state, in which great feelings will often take the aspect of error, and great faith the aspect of illusion. For there is no creature whose inward being is so strong that it is not greatly determined by what lies outside it. A new Theresa will hardly have the opportunity of reforming a conventual life, any more than a new Antigone* will spend her heroic piety in daring all for the sake of a brother’s burial: the medium in which their ardent deeds took shape is for ever gone. But we insignificant people with our daily words and acts are preparing the lives of many Dorotheas, some of which may present a far sadder sacrifice than that of the Dorothea whose story we know.

Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.”

A useful footnote in my edition of Middmemarch mentioned that sentence in the second to last paragraph had undergone intensive revisions to get to its current and final state (“They were the mixed result of young and noble impulse struggling amidst the conditions of an imperfect social state, in which great feelings will often take the aspect of error, and great faith the aspect of illusion.”). To me, Eliot’s edits demonstrate how powerful the removal of entire sentences can be during the revision process.  

From the original manuscript:  

“struggling with imperfect conditions. Among the many criticisms which were passed on her first marriage, nobody remarked that it could not have happened if she had not been born into a society which smiled on propositions of marriage from a sickly man to a girl less than half his own age, and, in general, encouraged the view that to renounce an advantage to oneself which might be got from the folly or ignorance of others is a sign of mental weakness. While this tone of opinion is part of the social medium in which young creatures begin to breathe there will be collisions such as those in Dorothea’s life, where great feelings . . . ’ 

From the first edition: 

“struggling under prosaic conditions. Among the many remarks passed on her mistakes, it was never said in the neighbourhood of Middlemarch that such mistakes could not have happened if the society into which she was born had not smiled on propositions of marriage from a sickly man to a girl less than half his own age—– on modes of education which make a woman’s knowledge another name for motley ignorance–— on rules of conduct which are in flat contradiction with its own loudly-asserted beliefs. While this is the social air in which morals begin to breathe, there will be collisions such as those in Dorothea’s life, where great feelings . . . “

When God Talks Back

When God Talks BackOne of my favorite books about religion, this is a very readable study of evangelical faith from an anthropologist’s point of view. I came across it after a great Fresh Air interview with the author and then it was also on the New York Times 100 most notable books of 2012. The world Luhrmann describes is somewhat magical and medieval in the best sense, a world where God can talk to you and miracles still happen. And you are always loved. Honestly, it sounds great. Just reading about someone’s firm belief in something unprovable is beautiful too, like the following passage, which I find so moving and powerful.