July 1, 2013

Last month, our group read the second third of Far From the Tree, including chapters on Autism, Schizophrenia, Disability and Prodigies.  I’ll let Solomon’s words, and his quotes from hundreds of interviews, speak for themselves.  Of course, there’s no substitute for reading the book, which I highly encourage for anyone interested in parenting or the challenges of having a “predicament” which might be viewed as identity or impairment – raising questions of self, family and community.

Autism

“A good measure of a society is how well it takes care of its sick people.  Our society is an outrage.”  (Quoting Amy Wolf, mother of a child with autism, p 273)

“When the kid is really little, you’ve got to get somebody to just spend thirty-eight hours a week working with that kid, keeping them engaged.  I don’t think the method matters that much.”  (Temple Grandin, p. 274)

“Without being self-aggrandizing, Temple has made what the world calls illness the cornerstone of her brilliance.”  (p. 275)

“Autism is both a disability and a difference.  We need to find ways of alleviating the disability while respecting and valuing the difference.”  (Simon Baron-Cohen, p. 282)

“Only when the many shapes of personhood are recognized will justice and human rights be possible.”  (Neurodiversity activist Amanda Baggs, p. 283)

“Two diametrically opposite fictions contribute to a single set of problems.  The first comes from the autism parents’ literature of miracles.  In its most extreme form, it describes beautiful boys and girls emerging from their affliction as if it were a passing winter frost, and after wild parental heroics, dancing off into springtime fields of violets…Such narratives of false hope eviscerate families who are struggling with the diagnosis.  The other plotline is that the child does not get better, but the parents grow enough to celebrate him rather than seek to improve him and are fully content with that shift.  This whitewashes difficulties that many families face and can obfuscate autism’s authentic deficits.  While the liveds of many people who have autism remain somewhat inscrutable, the lives of people whose children have autism are mostly avowedly hard – some, excruciatingly so…(H)aving a child who does not express love in a comprehensible way is devastating, and having a child who is awake all night, who requires constant supervision, and who screams and tantrums but cannot communicate the reasons for or the nature of his upset – these experiences are confusing, overwhelming, exhausting, unrewarding.  The problem can be mitigated by some combination of treatment and acceptance, specific to each case.  It is important not to get carried away by either the impulse only to treat or the impulse only to accept.”  (p. 290)

Schizophrenia

“For those who are unwell, however, the suggestion that flawed discipline and weak character are the source of their psychosis is torture.”  (p. 308)

“Bureaucrats who drew up programs often have never seen a patient, much less treated one.”  (Ann Braden Johnson, author of Out of Bedlam:  The Truth About Deinstitutionalization, p. 315)

“(S)ome studies suggest that if you were able to eliminate cannabis, you could reduce world rates of schizophrenia by at least ten percent.)  (Dr. Cyril D’Souza, Yale Psychiatrist, p 317)

“George is so decent.  Look at all he does with this going on in his head.  I might be proudest of him.” (Giuseppe, speaking of his son, p. 327)

“We now have medical and social means to help people.  But because of limtations in resources, lack of awareness, and stigma, most people aren’t helped.”  (Dr. Jeffrey Lieberman, current President of the American Psychiatric Association, p. 329)

“I think what I’ve finally come to terms with is that if you learn to live with things that aren’t pleasant, then, suddenly, sometimes they are.”  (Bobbe, mother of Susan who has schizophrenia, p. 346)

“Families rise to the occasion of various difficulties, struggle to love across those divides, and find in almost any challenge a message of hope and an occasion for growth or wisdom.  In some instances schizophrenia and related psychotic disorders may be put into this service.  Nonetheless, schizophrenia may be in a class by itself for unrewarding trauma.”  (p. 353)

Disability

“Parents are primed for parental behavior by their hormones and the act of birth, but in order for their behavior to continue, they must have partners that are responding appropriately (Susan Allport, an authority of maternal attachment)…There is probably no mammal in which maternal commitment does not emerge piecemeal and chronically sensitive to external cues…Nurturing has to be teased out, reinforced, maintained.  Nurturing itself needs to be nurtured.  (Evolutionary biologist Sarah Hrdy)”  (p. 363)

“Many coping strategies have a Zen simplicity.  Instead of resolving chaos, find beauty and happiness amid chaos.  I am reminded of a friend who said that when she found out her husband couldn’t fill her needs, she changed her needs; they’ve had a long, good life together.”  (p. 371)

“Asking the parents of severely disabled children to feel less negative emotion than the parents of healthy children is ludicrous.  My experience of these parents was that they all felt both love and despair.  You cannot decide whether to be ambivalent.  All you can decide is what to do with your ambivalence.”  (p. 404)

Prodigies

“Like a disability, prodigiousness compels parents to redesign their lives around the special needs of their child.  Once more, experts must be called in; once more, their primary strategies for dealing with the aberrance often undermine parental power.  A child’s prodigiousness requires his parents to seek out a new community of people with similar experience; they soon face the mainstreaming dilemma and must decide whether to place their children with intellectual peers too old to befriend them, or with age peers who will be bewildered and alienated by their achievements.  Brilliance can be as much of an impediment to intimacy as any developmental anomaly, and the health and happiness of families of prodigies do not outstrip those of others in this book.”  (p. 406)

“While etiquette demands that we not stare at dwarfs, it makes no such claim for the privacy of the prodigy.”  (p. 443)

“Gore Vidal Wrote, ‘Hatred of one parent or the other can make an Ivan the Terrible or Hemingway:  The protective love, however, of two devoted parents can absolutely destroy an artist.’  Early trauma and deprivation become the engines of some children’s creativity.”  (p. 445.  I’m reminded that every rose has its thorns, and that for some, these thorns are overwhelming – RC.)

“There are more than three hundred thousand children in China learning instruments…If you see a child in Chengdu who is not carrying a violin case, it means he’s studying the piano.”  (Gary Graffman, p. 454)

“(T)he No Child Left Behind Act…provides little support for gifted students.  The 2004 Templeton National Report on Acceleration asserts that the school system is designed to hold back children of remarkable abilities….Leon Botstein remarked drily, ‘If Beethoven were sent to nursery school today, they would medicate him, and he would be a postal clerk.”  (p. 458.  I would say I greatly appreciate USPS workers, but it seems quite true that a lot of children do not the proper support for their gifts to blossom – RC.)

Of Nico Muhly, musician, but this might be a summary of the book’s entire enterprise:  “He has integrated the emotional spectrum so we can hear joy and sorrow both at once, but he never average them.  You may reach into his joy and pull out a surprising handful of sorrow, but then when you examine that sorrow, you find it suffused with particles of joy.”  (p. 471)

Quoting Goethe’s mother:  “That one phrase, ‘my imagination was often replaced by his,’ bespeaks all that is most beautiful in the parenting of a remarkable child.  In so replacing one’s own imagination, one facilitates the growth of the child’s.  For the parents of prodigies, such wise self-effacement may exact a high price, but those who can set their own path by the light of their child’s brilliance may find great solace in the ways that child remakes the world.”  (p. 476)

Tune in next month for notes on the last third of the book.  If you want to come to a discussion group in San Francisco, join our Facebook group.  Thanks for reading!

© 2013 Ravi Chandra, M.D. All rights reserved.  

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