Autismland Refugees (#263)

Charlie’s pediatric neurologist called as we were walking to get Charlie’s favorite “brown noodles” for Friday dinner. I reported on the multiple instances of head-banging that have occurred every day except for Wednesday this week (and on and off for some weeks prior to this), also noting that most of this has been happening after 2pm and around 7.30am. The doctor recommended we give Charlie a slight increase in his medication and that we give it to him after he returns from school, so the level of the Risperdal in his body is more consistent throughout the day and night.
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When we first took Charlie to this doctor, his office was not a half-hour away. (And we had to wait for six months on a waiting list, just for that initial appointment.) When the neurologist told us over a year ago that he was going to be working Pennsylvania, Jim and I agreed that we would continue to see him for the short run, while looking for another doctor in New Jersey. We saw the neurologist in February, saw another neurologist in March 2005 and then a child psychiatrist—only to find ourselves driving back to Pennsylvania a few weeks later.

Pragmatically, our main reason for seeing this pediatric neurologist is for Charlie’s medication (Risperdal and Zoloft). Charlie of course has a local pediatrician but, in many ways, I have come to think of the neurologist as “his doctor.” The clinic where the doctor’s office is has the latest equipment to make it easy to take Charlie’s blood pressure and to weigh him (there are bars for him to hold onto; he usually tries to get right off the scale). And what we discuss with the doctor–Charlie’s neurology–is in so many ways the core concern in his education, and therapy, and life.

The neurologist checks Charlie’s reflexes, asks him questions (Charlie could answer “what’s your name” and “how was school” but not “what did you do at school”), observes his motor functioning. It is Jim’s and my narrating of our observations of Charlie’s behaviors, progress (or not) in his learning, speech and talking, sociability, that provide a lot of the evidence the doctor bases his decisions on. The doctor, that is, listens to us, Charlie’s parents, asks questions and provides his knowledge about medication or seizures or testing. And I think it is because we have been able to develop a dialogue with the neurologist that we’d drive twice as far to take Charlie for an appointment.

It has been all too rare that Jim and I have had this kind of good and honest rapport with a professional in our travels in Autismland. (We have always had such good relationships with almost all of Charlie’s therapists and teachers, with those whose job it is to teach Charlie day in and day out.) Too often, there has been no dialogue, but authoritarian pronouncements and decisions and so-called treatment plans put into place with no real justification for why giving Charlie an edible reinforcer every five minutes and telling him “good keeping your head up” would make the head-banging better. There have been meetings of annoyance turning into frustration and then desperation–when we were ready to hit our proverbial heads on the proverbial wall–at the utter lack of understanding of what we as Charlie’s parents knew about what was going on with Charlie.
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It often felt as if we were speaking one language and the Autism Professional (AP) another; that we were altogether illiterate in AP’s language and, worse, that AP was the acknowledged Voice of Authority and that we–because we objected to AP’s treatment plans on the basis of our understanding of Charlie and of autism–were crazy.

All this week I have been teaching The Spirit Catches You and You Fall Down by Anne Fadiman (1997) in my Cultural Anthopology class. The book’s subtitle–“A Hmong Child, Her American Doctors, and the Collision of Two Cultures”–sums up its main narrative: A very young Hmong girl, Lia Lee, is born to refugee parents uprooted from their native Laos and living in Merced, California. Lia has what will eventually be diagnosed as severe epilepsy (accompanied with mental retardation). Fadiman shows the extent to which it is the severe cultural misunderstanding between the well-meaning American doctors (who na├»vely assume that their instructions to give complicated regimens of anticonvulsant medications will simply be followed) and Lia’s Hmong parents that leads to inextricable tragedy for Lia. The culture shock for the Hmong–whose women traditionally gave birth in their dirt-floor houses with only their husbands helping, at the most–and who find themselves in public housing with a view of an asphalt parking lot is certainly huge. But the shock to Lia’s doctors, trained in the rationalistic principles of Western medicine, is no less, as they find themselves face to face with patients who call epilepsy qaug dab peg, “the spirit catches you and you fall down”–who see a stomachache not as the result of eating spoiled meat at a summer feast but as a testament that “the entire universe [is] out of balance” (61).


When one of Lia’s doctors discovers that the parents, despite their claims to the contrary, have not been giving her her anti-seizure medication, the doctor is said to think that Lia’s mother was “either confused or lying.” Fadiman captures the frustration of Lia’s doctors when she quotes one saying “‘…you kind of liked [Lia] because she was a character, even though you hated her because she was so frustrating and she caused you so much grief.'”
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I can understand the doctor’s powerful feelings to treat a child who was very, very sick–who was on a constantly-changing regimen of powerful medications including the anticonvulsants Dilantin and phenobarbital as well as Depakene and Valium by the time she was four and a half (46)–though it is painful for me–the mother of a child who (I like to think) is a bit of a character himself and who can indeed be frustrating and even “grief-causing” to teach–to read a doctor use a word like “hate” in discussing a patient and a child. For me, the use of that word “hate” (which one of my students also singled out today as we discussed the book) encapsulates that “collision of cultures” in the doctors’ frantic efforts to treat Lia with the best that Western medicine could offer, and their sad inability at least to understand Lia’s qaug dab peg from the perspective of her Hmong family.

And it’s the difference between a professional using a word like “hate” to describe (very honestly) their feelings about treating a very sick child whose parents just don’t get it, and us parents who have strong feelings about plenty of things that happen to a child with autism, but who can only shiver to hear a professional who prescribes medication and determines treatment using such a word. Charlie’s neurological wiring, like Lia Lee’s, too often results in him doing something I’d rather not see or write about here. And the doctors and the medications they prescribe (and the whole therapy/educational apparatus) are all absolutely crucial to helping Charlie to be all that he can be. But even at his worst, there is only the starkest love for Charlie, and sickening grief (a feeling, it is true, I am not so fond of) at our inability to help him as much as we want to.

“In Autismland, we’re all Hmong.”

Jim said that, in regard to some very difficult encounters with AP’s that we (and how many other autism families and autistics) have had over the years. In Autismland, we are like Lia’s illiterate, non-English speaking or understanding parents, forever displaced from the country we call home due to forces–foreign wars, foreign politics, someone else’s ideology–not our own. We are wanderers forced to leave against our will and knowing that we have left some piece of ourselves in that native land, just as the Hmong, in their homes in Laos, buried the placenta (which means “jacket” in the Hmong language) of a newborn in the floor of their house, so that its soul would know where to travel back to after a Hmong dies. “If the soul cannot find its jacket,” Fadiman writes, “it is condemned to an eternity of wandering, naked and alone” (5).
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We are wanderers totally ignorant of the culture, the mores, the language of the country we have come to and, lost and weary, we sometimes just nod “yes” because we want to pick up our child in our arms and get out of this cold white building and go home, even it if it is a tiny cinderblock apartment in a dusty city of metal and concrete. We have been tossed about on land and sea, fugitives as the fates may be.

Jim got Charlie off the bus today; they went for a walk and played catch while Charlie looked edgily up and down the street saying “Mommy” and “Mike.” Charlie stood somberly at attention as I drove up. He smiled as his ABA therapist drove up and –though we all thought Charlie seemed unusually tired—went through all of his programs, played Boggle Jr. and with his computer distractedly. He called out “Daddy home” once and cried (Jim had gone to run errands) then was seen grinning “piggyback” as the therapist gave him a ride down and up the stairs. We had an early dinner of those “Thai noodles with shrimp” (as Jim coached Charlie to say) after which Charlie showered and–his head suspiciously warm–went straight to bed. He has something—I hope not a recurrence of February’s croup.

We will probably be spending Saturday at home, the place where Charlie talks the most and where he knows that his hat and fleece jacket are on the black chair by the TV, safe and sound.

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Comments
4 Responses to “Autismland Refugees (#263)”
  1. Amanda says:

    You know…

    I have seizures. And I take drugs for them. But I don’t view myself as “sick” when I have them, and “sick” is a word that has never crossed my mind with regards to epilepsy.

  2. Yes, that is the limits of the ways we have (and need to push and change) of talking about what Hippocrates called the hagnos nosos.

  3. Lisa says:

    Kristina,

    Again you have so eloquently expressed much of what I feel on a day to day basis navigating the boundary between the “NT” and “Aspie” worlds. In the world of researchers and university hospitals, I am diagnosed with a disorder lumped in a huge manual with psychiatric impairments.

    In the other world, I am just me–quirky me.

    Because I need to live in both worlds, I often feel fragmented, wanting to bang my head on that metaphorical wall.

    Best to your family from mine.

  4. Estee says:

    Kristina,

    I just started reading this book and am 1/4 way in. I like what you wrote today about Autismland and Hmong.

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