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Reasonable People: A Memoir of Autism and Adoption: On the Meaning of Family and the Politics of Neurological Difference by Ralph James Savarese is a tough read, for good reasons. Savarese, an English professor at Grinnell College in Iowa, writes fearlessly and honestly about his experience as the father of DJ, a non-verbal autistic boy adopted by Saverese and his wife, Emily. DJ’s biological parents are addicted to drugs and place him in foster care, where the three-year-old child is horribly abused, physically and—as emerges when DJ is later able to type and tell what really happened—sexually (p. 249). Savarese leaves little out in narrating the bureaucratic minutiae he and Emily have to go through to adopt DJ; their constant work (especially that of Emily, who had extensive experience working with autistic children before meeting DJ) to have DJ mainstreamed in public school; and their efforts to give DJ the family and the love that were not part of his younger life, both through their own full-hearted attention to their son and their attempts to ensure that DJ’s biological sister, Emily, who lives with her father and stepmother far away, remains part of his life.
Throughout Reasonable People (which is due out in May 2007), Savarese, a published poet who also teaches creative writing, makes frequent reference to poetry and literature—to Émile Zola’s La bête humaine (p. 18), to Annie Dillard’s “Living like Weasels” (p. 74)—to reflect on his experience raising DJ. DJ learns to communicate through typing with some facilitation from his parents (p. 128), and Savarese is careful to note that his is a skills that evolves slowly over time for DJ. From about the time that he is in the fourth grade, DJ starts to type more and more, to use language more and more. And as DJ learns to express himself in language, aggressive and violent behavior (poking, head-banging, biting, hitting) occur more and more. DJ keeps communicating by typing, and his parents keep listening and trying, and Savarese speculates that it ought not to be a surprise that DJ’s “turbulent emergence into language” (p. 150) should have rekindled feelings, and memories, that have literally never been spoken and that have, indeed, had a traumatic impact on DJ.
DJ was moving into language with breathtaking speed, and language brought with it awareness at once inquisitive and disintegrative. Moments of penetrating insight would be followed by periods of extreme panic and upset. It was as if language were the hand that had brought the lens of the past into focus and that focus caused the photograper to hurl the camera onto the ground—over and over and over again. Language meant anxiety. Language meant fear. (p. 152)
Starting in ch. 5, “Guidance,” DJ starts to type out what really happened to him in foster care. He was beaten, “mercilessly” (p. 148), by another boy in the same foster care placement, Kyle. DJ starts to see Kyle anywhere and everywhere. He also expresses his worries about Savarese and his wife leaving him, as well as a strong desire to see Ellie. And here, as Savarese struggles to understand not only DJ’s difficult past, but also how DJ is himself struggling both to express and to understand his own past, he considers what psychonanalysis—which, in recent times has quite fallen out of favor for what it provides as regards understanding autism—can offer.
I wanted a framework for understanding DJ’s emergence, and I wanted to take seriously the discovery of his sister [Ellie] in language. [DJ has started to type about "the girl," i.e., Ellie.]……
If, as some psychoanalytic theoriest propose, language is a kind of surrogate parent (or in this case, sibling) that instills a longing for oneness exactly as it reminds us of this impossibility, then DJ’s life story literalized a fundamental paradox: the acquisition of language betokens loss. Put provocatively, language is the group home of life. By the time an infant recognizes his separation from his mother and can speak of her as a discrete object, he is already racing toward the lonely singularity of adulthood. (p. 156)
It is a great thing that DJ has learned a way to communicate, to “speak for himself” but, as Savarese recognizes, DJ’s entrance into language has opened up new complications. DJ can type the name of his sister, Ellie, can speak of her, but to type a word is not the same as having the sister who was once your only, sole defense and person who loved you, and “Ellie thus became the name he’d track like a bounty hunter through the swamps of longing, a bounty hunter who wouldn’t give up” (pp. 156-157; Savarese writes more about how psychoanalysis offers “some instruction” on how DJ works out “the problem of abandonment” on p. 170).
As he communicates more and more about his past, DJ’s violent behaviors continue and happen also at school. In chapter 7, “Poking”—the word describes what Kyle kept doing to DJ when they were in foster care together and is also “a metaphor that condensed a host of bad things” (p. 188)—Savarese and his wife start to think, along with DJ’s doctor, that DJ has post-traumatic stress disorder (PTSD). DJ’s autism and his gradual acquistion of a means to communicate complicate matters, as Savarese writes:
What I knew of trauma suggested a failure of language in the face of devastating injury, but here language failed as DJ acquired it. Language allowed him to organize experience but that organization (“I lost my sister,” “I was beaten”) prompted a crisis. It didn’t, in other words, contain the trauma as Freud thought narrative would. DJ’s mind was like a Mission Impossible communiqué, combusting immediately after it’s read. (p. 189)
Telling his traumatic experiecces—speaking and writing about his horrible past—do not contain the trauma, the pain and the suffering and the psychic wound for DJ. The very telling is traumatic, and occasions violent outbursts that seem nearly on a par with the original, terrible acts that created the trauma in DJ. Savarese and his wife seek a therapist for DJ (who is also on medication, first Zoloft and then Risperdal, as well as Topamax for hemiplegic migraines (p. 196) ). Savarese again seeks to understand what is going on with DJ by reading about trauma and autism; by again considering what psychoanalysis might contribute to understanding DJ. Savarese notes that autism, once “thought to be a psychological disorder whose symptoms often resembled those of trauma significantly complicated the matter” and considers the shift in our conceptualization from a psychological disorder to a biological, a neurological one. “I found this shift worrisome, ” Savarese notes, “because it seemed to lose the person in the condition and, in a cold, clinical way, to render it hopeless” (p. 198).
Quipping that, ever since the 1964 publication of Bernard Rimland’s Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, the study of autism has become “all brain and no mind,” Savarese notes that, while Rimland’s work “rescued mothers from the accusation of responsibility by insisting on a biological etiology for autism, the field has largely eschewed psychological, and especially psychoanalytic, understandings…….The picture that has emerged was of a devastating disorder that robbed a person of his or her humanity” (p. 199). Savarese continues, in mentioning no one less than Bruno Bettelheim:
For all the harm that Bruno Bettelheim did with his theory of the refrigerator mom, he still held out for the possibility of the child’s improvement and, despite his admittedly perverse methods, honored the child’s complex psychological makeup. Now, in order to avoid blaming the mother, we must in effect blame the child. The current thinking is excessively binarial—psychological or biological—and very fatalastic. A recent study of Romanian orphans by Michael Rutter and colleagues came to the shocking conclusion that trauma, in this case extreme deprivation, could produce the symptom set we call autism. ……
Remembering that nowhere near a majority of the orphans become autistic, we must nevertheless acknowledge the impact of environment in generating the condition in some of these children. At the same time, we must be careful not to conclude that all of the cases had an environmental origin, and we certainly shouldn’t map back on to ordinary families a theory of traumatic deprivation—at least not necessarily. That said, we should expand our sense of what autism is, why it occurs, and how it can be helped so that our account might accommodate the full range of factors in their dynamic interrelation. Rimland’s advice to parents to “refuse psychotherapy” is not helpful, for such therapy could allow someone like DJ to reflect on the events of his life (whether or not those events were a precipitating influence in the development of autism) and to deal with the issue of being different in a stigmatizing world. It could also be model for those befuddled by a complex social-emotional life a kind of feeling exchange. The point is to restore complexity to the debate and to the individuals under discussion. (pp. 200-201)
Consider the underpinnings of the vaccine theory of autism and other environmental theories: Such theories, in which some external agent is solely responsibility for taking away a child’s abilities to communicate and, truly, to be as a “normal” person, in effect render the child a helpless creature undone by phenomena completely beyond her or his control. Such theories that boil down autism to a single cause—to, for instance, “mercury poisoning“—depict a child as but a puppet at the mercy of various forces (mercury, pollutions, TV), and completely incapable of summoning any mental ability of his or her own. I do think it the case that these sorts of biological and biomedical theories of autism—which search hard to find an environmental factor to cast blame on and which represent children as victims—fail to account for the psychological complexities of autistic children and persons (though it does seem to me that there was more that was “perverse” about Bettelheim than his methods, in that his theory of autism aetiology rests on a single cause, bad parenting, and, in particular, the refrigerator mother). In oversimplifying what autism is—and what autistic people are—-a strictly biological understanding of autism can only make a limited and incomplete—if not simply inaccurate—contribution to considerations of what autism is and to how best to teach and treat autistic persons.
DJ’s own words (often just as he has typed them, as “‘yred trying to grrt frrrere kyle,’” p. 248) are woven constantly into Saverese’s narrative in Reasonable People. The final chapter, “It’s My Story!”, is all DJ’s own, and the constant presence of DJ’s own voice in his father’s book is a simple witness to a complexity—to a story—that perhaps no language could ever fully contain.
Here’s more evidence that trauma is always involved in the etiology of autism:
http://www.autism-pdd.net/testdump/test10243.htm
You wouldn’t be Amy Alkon would you?
So. Freud’s work is “not so good” huh?
Did you ever consider the possibility that the “times” themselves are regressive–almost childlike in their search for mechanical answers to incredibly complex issues.
You know, Freud started out as one the world’s top neurologists. To this day his work in aphasia is required reading for neurology residents all over the world.
Those who don’t take into consideration the fact that neurons are living beings with drives of their own are going to end up beating their heads against a wall.
Someday you should check out how Charleton Bastian http://en.wikipedia.org/wiki/Henry_Charlton_Bastian came to grief by pooh-poohing Freud. He was he head of the University of London neurology clinic and a typical reductionist contemporary of Freud who blasted his work on aphasia, because Freud had made the outlandish statement that brain centers were unimportant to any particular function. Until, that is, one day a patient checked himself into Bastian’s clinic suffering from severe headaches and a mild intermittent stutter. He was dead within ten hours. An autopsy revealed that one hemisphere, along with the ENTIRE speech center, had been completely destroyed by a cyst! Shortly thereafter Bastian retired to work on his experiments with spontaneous generation of life.
The neurologists are still at it. How many times have you heard solemn explanations as to how psychology is dependent on chemistry in brain centers. It is so damned simple-minded.
Fifty years from now, neurologists will probably be practicing witchcraft
Larry, get with the times. There’s nothing but neurology. Next you’ll be describing the effects of phlogiston on the newborn’s ego.
All of this strikes me as fantastically premature, though. If you want etiology, I’d say wait another 50 years for the neuroscience. Otherwise it doesn’t matter. Is what is.
The problem with using Shakey that way is the usual better-than-you problem: using a quote from something very good to support work that’s not so good. Animal impulse seems to be fine with him, he’s very good at that.
Hi Nym-b out:
You wrote:
“Stunningly beautiful. To have such thoughts, I wonder if Shakespeare was … oh, never mind.”
I know it’s not good to apply such beauty to banal things. Now I feel sort of bad. Even so:
“Finally, one can only characterize as simple minded the fear which is sometimes expressed that all the highest goods of humanity, as they are called–research, art, love, ethical and social sense–will lose their value or their dignity because psychoanalysis is in a position to demonstrate their origin in elementary and animal instinctual impulses.”
-Freud
Well, I guess it’s back to the old drawing board for Bettelheim.
Autistics withdraw from the outside world?
On the contrary, I don’t think that “withdrawing from the outside world” was ever what happened with autism. Withdrawing from sociality? Sure. But the outside world, through stimuli and thought?
In my experience, that’s not true. I didn’t.
Also, I’m not sure that Bettelhiem’s theories are generally dismissed because of angry mothers. I wouldn’t object to the theories themselves because they angered mothers, but I still do find the theories inconsistent with the condition of autism.
Cliff
Stunningly beautiful. To have such thoughts, I wonder if Shakespeare was … oh, never mind.
Thanks for that Larry. To even have written that one thing in one’s life would be exceptional, but to think of all he wrote, it’s nearly too much (for me) to comprehend.
Did I talk about death symbolism in dreams?
“Give me my Romeo, and, when he shall die,
Take him and cut him out in little stars,
And he will make the face of heaven so fine
That all the world will be in love with night,
And pay no worship to the garish sun.”
-Romeo and Juliet
I can’t argue against that. One of the most effective treatment of autism nowadays is “floor time,” which essentially duplicates Betteheim’s Orthogenic School therapy, but with the mother present. Go figure.
Oh, that reminds me of why you were on my mind Larry. On Friday night, I dreamed my death.
Interesting. I’ll write Manny and ask him that. I see the Star quotes Mike M. from UCSF and I really have some problems with him, so I’ll need to re-read that a few times so as not to be biased.
Moreover, one of Bettelhiem’s determinants for a genetic predispostion to autism was precociousness at birth. If you ever had a tidal wave dream, you too were probably too precocious at birth for your own good. Humans are born with safe modes turned on for a good reason.
But this is precisely what Jackie Sussan did with her son, she sent him to Arizona at quite a young age. He didn’t improve in the least as I understand.
Hi Nym’d out:
Yes, but there is this too:
http://www.thestar.com/article/198170
There is no way of knowing which came first: the super minicolumn or the erudition.
(and again)
… between the comparison groups in both minicolumnar width (CW) and mean cell spacing (MCS). Although our scientists did not exhibit deficits in communication or interpersonal skills, the resultant minicolumnar phenotype bears similarity to that described for both autism and Asperger’s syndrome. Computer modeling has shown that smaller columns account for discrimination among signals during information processing. A minicolumnar phenotype that provides for discrimination and/or focused attention may help explain the savant abilities observed in some autistic people and the intellectually gifted.
(con’t)
Overall, there were significant differences (p
Incidentally; in my post on the good breast/bad breast issue I forgot to mention that the *development* of autism is actually a withdrawal from external reality, whose representative is the breast–the mother. This, of course, implies that in order to recuperate, the autistic child should be removed from the mother’s threatening presence.
This alone I think might be enough to make mothers detest Bettelheim.
There is no way he could win. Thinking about things is dangerous nowadays.
Perhaps not a “neurological disorder” at all, but instead a “neurological difference”:
Autism. 2007 Nov;11(6):557-69.
_Comparative minicolumnar morphometry of three distinguished scientists._
Casanova MF, Switala AE, Trippe J, Fitzgerald M.
University of Louisville, USA.
It has been suggested that the cell minicolumn is the smallest module capable of information processing within the brain. In this case series, photomicrographs of six regions of interests (Brodmann areas 4, 9, 17, 21, 22, and 40) were analyzed by computerized image analysis for minicolumnar morphometry in the brains of three distinguished scientists and six normative controls. Overall, there were significant differences (p
OK. Here’s where we differ. I just can’t see enough evidence of autism being a neurological disorder.
And no, I didn’t read Stanley Greenspan. If he presents compelling evidence of neurological differences between the brains of children suffering from RAD or PTSD and those with autism, I’ll change my mind.
It’s at the word “develop” that we diverge, if ones views autism as a neurological condition that a child is born with. Have you read Stanley Greenspan on how autism develops?