Sunday, January 09, 2011

Book Report: A Thorn in My Pocket by Eustacia Cutler

(This report was submitted for my General Psychology course last semester.)

Eustacia Cutler is the mother of Temple Grandin, probably the world’s best known "autism celebrity" today. In her memoir A Thorn in my Pocket: Temple Grandin’s Mother Tells the Family Story, Cutler explores the difficulties and challenges she faced raising an autistic child in the years immediately following WWII. She tells the story of Temple's life from birth, chronicles the misinformation they received and diagnosis they struggled to grasp, how the family coped (or didn't cope) and what pathways opened up for them all as a result.

When Temple's parents first sought assistance for their daughter, they were shuffled amongst skeptical doctors. Mental retardation and brain damage were the first terms used to describe Temple; autism and infant schizophrenia were eventually used to diagnosis her at the age of 3 (Cutler, pg. 30). The gravity of these words was enough to send Temple's father reeling and he firmly dug his trench in his war to have Temple institutionalized from the very beginning. Eustacia never allowed it and their marriage suffered for it, ultimately ending in divorce when Temple was a teenager.

Despite little societal support, Eustacia was adamant about Temple's therapies, social instruction and rigid behavioral rules. She sought all treatments on her own, worked them in to her family's life (Temple also has three younger siblings), and persisted in the notion that Temple could learn, all the while defending her first-born daughter from naysayers (including her own father) at every turn. And it worked. By all accounts, Temple succeeded (and is still succeeding) in her life against all early predictions. Today, Temple holds a Ph.D. in animal science, is a professor at Colorado State University, a world-renowned humane livestock facility designer and autism advocate/speaker.

Clearly, the intense conviction Eustacia demonstrated in her daughter's abilities is amazing. As a parent with a child on the autism spectrum, I can sympathize with her emotional reactions to Temple's diagnosis and commitment to "fix" her daughter, but I can’t even begin to imagine living in an era of such unbending social rules with a misunderstood child who doesn't match the norm.

What I find even more astounding is how the psychiatric institution as a whole dealt with autism. Eustacia's hindsight reveals that the experts she consulted didn't really know what they were doing after all, but needed to find a way to describe, catalog and deal with individuals displaying autistic traits. Some advanced doctors were willing to think outside of the box and acknowledge that they didn't understand the whole picture. One of Temple's earliest pediatricians ordered brain scans to rule out petit mal—absence seizures connected to epilepsy—and Eustacia later credited him for at least being willing to explore possible neurological differences in her daughter (pg. 209). But most were more than willing to institutionalize a child in the name of science (pg. 138). The pervasive belief that psychoanalysis was the only way to get to the root of autism held its grip on these professionals for decades, despite compelling early research showing a neurological basis for autism that couldn't be treated with "talk therapy" (pg. 208).

Temple was born in an era when most childhood afflictions were assumed to be the result of something the mother did wrong and autism was no exception. Bruno Bettelheim was an Austrian-born child psychologist whose theory—that autism originated from mothers withholding affection from their children—was just taking hold in popular culture during the time when the Grandins were exploring the nature of Temple's challenges (pg. 33-34). Bettelheim's ideas later faded from popularity, but they hovered as a dark shadow over Eustacia for decades. At one point, Eustacia believed that she might have caused her daughter's autism by creating some early psychosocial trauma in Temple (pg. 34). As a graduate of Harvard and lifelong learner herself, she kept doing her own research all the while. But she still succumbed to the popular notion of the times, at least a little.

What strikes me here is that Eustacia took on this misplaced blame yet persevered in championing her daughter as a valid human being and refrained from diving into the depths of depression herself (despite having a husband who tracked her every move in a handwritten notebook over a 3-year period in an attempt to have her proven insane in court [pg. 146]). Without a doubt, this represents strength of character that many of us can only hope to reach. Yet how many other families with autistic children did not fare so well during these experimental years of parental blame and institutionalization as a result of following "expert" advice?

Finally, in the 1980s, psychiatry started to come around as an institution and admit to the neurological basis for autism. In the last chapter of A Thorn in My Pocket, Eustacia states:
"When did the psychiatric world release autism from its psychosocial shackles and turn it over to the bioneurologists? And why, despite the 1964 research linking autism to epilepsy, did it take until 1985 for the neurological information to reach the family pediatricians who were examining autistic children and advising desperate parents?" (pg. 208)

Eustacia said she "would have liked an apology" for this erroneous oversight (pg. 209), but she would have to settle with this statement of appreciation from Temple's doctor regarding her commitment to her daughter’s therapies and education:

"…you have done a job that has put the entire staff of Children’s Hospital to shame. Do you realize that it is as rare as if Temple had recovered spontaneously from leukemia?" (pg. 147)     

Eustacia's reflections on Temple's ancestors and the unique traits they displayed added more pieces to the puzzle of her daughter's autism. She was able to see autistic traits on both sides of Temple's family tree, despite these relatives never having been diagnosed with autism (pg. 191-205). Much later, after his death, she was even able to finally connect the dots that Temple's father may have had autism/Asperger's (pg. 217).

Eustacia is now lecturing nationally and internationally with her daughter at autism conferences, offering her support for families through retelling her experiences and sharing her own extensive research. She writes on the inside jacket of her book:

"Think of me as your future. I am where you will be many years from now, when you know how it all played out and 'what will be' turned into 'what was.' And you will have come to terms with it, not perhaps in the way you thought you would, but you'll no longer feel trapped in a morass of angst and guilt. You will have resolved your child's future and your own. You'll know you've given full measure and the measure you've given has never been pointless. I offer you my story as a promise of that…"

I am personally grateful for her words and in awe of her story.

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