The Rake Magazine

Tag: autism

  • "God talked to me today"

    The first time it happened, he was sitting in the kitchen behind me.

    I was at the counter cutting vegetables for dinner when my older son said, "When God talked to me earlier today, before I went to school…"

    That’s how he spoke as a child. He was only 11, but his diction was formal, biblical almost, and he habitually attached clauses to make his points more precise. If he heard from God, it would be important to know not only that it was today and that it was early but also that it had occurred before school.

    I turned. "What did he say?" I asked. But Andrew was already gone, concentrating on something midair, eyes soft behind the thick lenses of his glasses. "Sweetheart?" Then I fell silent, too, forcing myself not to prod. Andrew has autism, and I’d learned that repeating a question only increased the amount of time he needed for mental processing. Patience — or even just the appearance of it — was the only way to get through.

    By the time Andrew emerged from his reverie and began humming again, wagging his pencil back and forth above a rumpled page of history homework, dusk was settling in the room. The air outside had turned dim and coffee-colored. I switched on the overhead light.

    "What did he say?" I repeated.

    "What did he say?" Andrew muttered, as if this were a puzzle.

    I grew itchy waiting this time, which may have had something to do with the light. The gloaming of evening: It was dangerous for me. My mind slowed and things tended to happen or be said before I’d thought them through.

    "He said …" — I barely breathed for fear of interrupting my son’s fragile train of thought — "no."

    The word — though small and softly spoken — rang like a bell, echoing through the gloom. No, no, no.

    I waited for it to finish before asking, "No what?"

    Andrew shrugged, looking for a moment like any boy. "Just no. Because I knew the rest of what he meant."

    He made a hesitant mark on the sheet in front of him but erased it immediately. Maybe God could help you with your homework, I almost said, but I didn’t because Andrew wouldn’t find it funny. Maybe he could explain a few things to me.This was not so much a joke, because there were things I really wanted to know, like why my son’s thought process seemed tangled one moment and profound the next, and why my mostly devoted husband sometimes disappeared on a drinking spree, and what the point of life was anyway.

    Then I watched as Andrew wrote an answer on his history sheet. Then another, and a third. I hovered over his shoulder, looking down. France, 26, Petroleum and Coal. I had no idea if these were correct, but they were there on the paper, legible.

    I looked at Andrew’s face. But his eyes were closed, as if he were still listening. Classic autism is a disorder of divisions. There is no sense of "I" and "you" as being whole and separate in the world. Either that, or there is a lack of understanding that "I" and "you" are even of the same species, any more similar to each other than, say, a human being and a walrus. I’ve never understood exactly which it is.

    The "test" for autism — back when my son was diagnosed, in 1991 — was simple. A child suspected of being autistic would be placed behind a one-way mirror to watch this scene: A little girl in the neighboring room was given a toy and told to put it in one of three baskets. Then she was taken out for a snack. While she was gone (but the test subject still watching) someone entered the room and switched the toy from one basket to another. This question then was posed to the witness: When she returns, where will the girl look first for her toy? A "normal" child would point to the basket where the girl had stowed the item. But an autistic one would choose the basket to which it was transferred after she left, not understanding that even though he knew it had been moved, she did not.

    In other words, to know or remember or feel something as an autistic person is not a subjective experience. It is, rather, a matter of fact.

    I cannot recall if Andrew ever had the hidden toy test. But throughout his childhood there were a series of meetings, odd questions, games, expert heads nodding. It was clear: My son was, in their lexicon, mind blind — unable to process the "otherness" of people … or the "peopleness" of others. Add to this the evidence that he had problems with both perspective and pronouns when he started speaking again. "The boy is cold," Andrew might say, when he himself was shivering. "You smell," he once told me, even as he was pointing to his baby brother whose diaper needed to be changed.

    By the time he’d reached adolescence, most of these problems were gone. Andrew had been through speech therapy, where he was trained in pronominal relationships — I, you, he — and I’d spent several years pointing out to him that there were also things he knew that the rest of us didn’t. Square roots, exact latitudes and longitudes, his private thoughts. Tentatively, Andrew began locating himself in the universe, figuring out where he left off and everything else began.

    Then this God thing cropped up — an echo, I decided, of all the old problems. Whereas Andrew had learned to differentiate his thoughts from mine or his teacher’s, he didn’t seem to understand where he ended and God began, or which of the two was speaking to the other.

    To continue reading, go to page 2 on     Salon.com.

  • Michael Dorris: Lessons in Anguish and Drink

    I’ve spent the day researching the life of Michael Dorris: reading him, reading about him. And the dark, frantic moral of his story seems to be simply that some lives are unlivable. This is not a comforting thought.

    He was an extraordinary writer. No matter what his myriad sins, this man had a way on the page that was gentle and lucid and lyrical. I’ve no doubt it inspired other people to be better than they were, even if he, the writer, was hiding a self so sinister he eventually killed himself (in 1997) rather than be revealed as the Hyde that he was: nocturnally — when he was out of the public eye — an unspeakably monstrous man.

    In addition to being an essayist, a novelist, and a scholar, Dorris was the author of a 1990 memoir called The Broken Cord, which is among the loveliest, most heartbreaking books I have ever read. More important, he more than anyone was responsible for publicizing the scourge of fetal alcohol syndrome (FAS) particularly in Native American populations, and for calling on legislators to enact laws that would make it illegal for a pregnant woman to cripple her unborn child by drinking.

    In his 1992 testimony to the Centers for Disease Control, Dorris said:

    Unlike so many good people — scientists and social workers and politicians — who have chosen out of the kindness of their hearts and the dictates of their social consciences to become knowledgeable about fetal alcohol syndrome and fetal alcohol effect, to work with their victims, to demand prevention, I was dragged to the subject blindfolded, kicking and screaming. I’m the worst kind of expert, a grudging, reluctant witness, an embittered amateur, and, above all else: a failure. A parent.

    I’m a living, breathing encyclopedia of what hasn’t worked in curing or reversing the damage to one child prenatally exposed to too much alcohol. Certain drugs termporarily curbed my son’s seizures and hyperactivity but almost certainly had dampening effects on his learning ability and personality development. Fifteen years of special education — isolation in a classroom, repetitive instruction, hands-on learning — maximized his potential but didn’ t give him a normal IQ. Psychological counseling — introspective techniques, group therapy — had no positive results, and may even have encouraged his ongoing confusion between what is real and what’s imagined.

    Brain surgery hasn’t worked.
    Anger hasn’t worked.
    Patience hasn’t worked.

    Love hasn’t worked.

    (from Paper Trail, Harper Collins, 1994)

    I read this and several other of Dorris’s essays last night, not out of literary or professional curiosity but because I was trying to figure out the motivations of the man.

    His words ring true to me, despite everything I know. Despite the allegations by Hennepin County investigators that Dorris abused (sexually and physically) four of his five living children before taking his own life in a New Hampshire hotel room. He was a man who had lost a child — his older son, Abel, whom he’d adopted at the age of three then tended and coached for 20 years — and appeared, for all his egregious sins to be entirely shattered. Grief-stricken, not just because his grown son was hit by a car and killed. But because his life, while he’d had it, had been such an unholy mess.

    Dorris reportedly bullied, hit, kicked, and screamed at his children. He probably — though we in the public will never now know — sexually violated his young girls. He tortured the son afflicted with FAS whom he believed (or said he believed) could pay attention if only he tried. Dorris’s conduct was, in the strictest sense of the word, unforgivable. But at the same time, he seemed genuinely bewildered and undone by his inability to help his child.

    Today, desperate to understand and learn from the mistakes of those who’ve gone before, I actually contacted Colin Covert, the terrific writer who covered the Michael Dorris story back in ’97 and went on to become the Star Tribune‘s film critic.

    An excerpt from Covert’s landmark investigative piece "The anguished life of Michael Dorris":


    Although Dorris’ writing about his family humbly noted many of his
    shortcomings as a parent, it never hinted at violence. But his son
    Abel, describing his life in an epilogue to "The Broken Cord," cited
    incidents in which Dorris pushed the retarded boy "face first into the
    wall." He said Dorris punished his younger brother by shutting him
    alone in his room to cry for hours.

    "What I want to know is, what was your gut feeling at the time, as you
    investigated?" I wrote to Covert. "Was Dorris guilty? Was he victimized? Was it a combination of the two?
    He seemed — in his writing — to have been wrecked by his own inability
    to cure his adopted children. Was this simply hubris turned ugly? Or was it a
    father’s grief so dark that it took him over and made him do terrible things?"

    I signed my name, then added a postscript. "I am the parent of a profoundly disabled child and I find that as he grows
    older — and becomes more intractably impaired — some of the people around him have begun to behave in odd and hurtful
    ways. That’s why I ask these unanswerable questions. . . ."

    Here’s what I did not say: One family member no longer speaks to me — or to my two younger children — because she faults me for my 19-year-old son’s worsening struggle with autism. And a caregiver my son once loved and counted on has become punishing, hostile, and sporadically cruel, probably because he cannot deal with the fact that his attention did not constitute a cure.

    Frustration, fear, and hopelessness seems to have driven these once caring people completely insane. And I am afraid of going over the edge with them. I read Dorris, in part, to remind me. To hold me back from being so jaded that I, too, am useless.

    Covert must have sensed some of this in my e-mail. He wrote back immediately, advising me to re-read the piece and draw my own conclusions. Then he added a postscript of his own. "I wish you all the strength in the universe. You’ll be in my thoughts and prayers tonight."

    It’s amazing to me how much that sentence — coming from a virtual stranger — matters. Tomorrow, there will be a meeting at which we will, hopefully, begin to determine my son’s future. And I will try once again to rally faith that despite all the uncertainty and cynicism surrounding him, he has one to face.

    It is ironic, I admit, but I opened a bottle I’d been saving — a 1996 Lyeth Meritage — to help me figure this out tonight. Bottled the year before Dorris died, this is a red table wine that’s aged and acquired a bite, like an old man with a wicked tongue. It’s sour upon first sip, cherry and apple cider and vinegar and, yes, piss. But the finish is smooth and knowing, as the Atlantic surf receding, a definitive end to a wine that’s lived long enough to know how to exit. I like it because it matches my mood, which is both determined and resigned.

    It is tempting, as a writer, to act as Dorris did: to use words in order to appear collected and enviable. He did this to his — and his family’s — detriment, I think. Said Mark Anthony Rollo, editor of an Indian newspaper called The Circle: "Michael started falling apart, I believe, when the chasm between his
    public persona — which was in a sense fictional — and his self in
    private life just couldn’t be reconciled."

    I decided tonight, after a couple glasses of the Meritage, that it is better to be open, flawed and unsure, rather than covert and vain. Even as a writer, even in print. It is wrong — and dangerous — to put forth a front of heroism while living an addled life.

    Perhaps that is the lesson of Michael Dorris. If, indeed, one exists.

  • What I Learned from Erica Kane

    I think it’s time you knew: I watch a soap opera. Not every day, not even every week, and never, ever in real time. (Not only is it a depressing thing to do at noon, I simply can’t stomach all those commercials for floor cleaning products and maxi-pads with wings.) What I do is record it on an old-fashioned VCR and watch at odd times, when I need it.

    Here’s my theory about soaps — though keep in mind, I’m basing this entirely upon the viewing of a single one: they’re modern-day morality plays. Nowhere in our culture is the battle between good and evil so clearly played out. And like allegories, these stories always resolve with a message. Valor is rewarded. There is no sin so egregious it cannot be atoned for. True love conquers all.

    It’s really quite that simple. Forget all the ill-advised love affairs and murder plots and abortions. These programs are about good, old-fashioned values. The elderly are wise. The pious, the disabled, and young children are protected. And there is nothing (this is very important, it seems to me): no act so stupid or evil or careless it cannot be undone. Throw your sister down a well in a fit of jealousy? Kill a pedestrian while driving drunk? Seduce your daughter’s husband? All this is forgivable because people are fallible but decent and God loves the lot of us, each and every one.

    It is precisely because I don’t believe these things, because I’m agnostic and a cynic at heart, that I watch this utterly unbelievable show. I pull out my clunky old videotape — it doesn’t matter which episode because I haven’t been keeping up — pour a glass of wine and sit to watch two or three hours of serialized redemption at a time.

    Don’t even bother getting haughty. You can lecture me about the cheap camera shots and melodramatic organ music; I have a degree in film theory. Do you really think I haven’t noticed? The thing is, this isn’t about media or entertainment, really. It’s about believing in something more elemental — something other people, those lucky Appalachians and preacher’s children and Republicans — get from chuch or country. There is a right way to do things, a basic code of human goodness, if you will. When the town megalomaniac softens and makes a heartfelt speech on behalf of the gay schoolteacher. . . .you get it. This is unequivocal decency. A Mafia-like rule for family unity. Watch and you, too, will learn.

    I needed this sort of help when my children were babies. We were poor and the planet we lived on seemed so scary. Who, in their right mind, would launch a small infant into such a random, wild world? Nights, I would stay up nursing them and watching, fast-forwarding through the commercials, comforting myself with the fact that there is order to be found in even the most chaotic, crisis-strewn existence.

    There have been years I skipped the soap and others when I leaned on it heavily. Lately, I’ve caught maybe four or five episodes a month — which is more than enough to keep up with the plot.

    Early last week, however, I found myself deeply in need of a bath in Pine Valley’s particular brand of logic. It was the day news broke, on Google and NPR and CNN, that doctors had discovered a "link" between fever and a potential cure for autism. It was a huge story: parents actually reported that their children’s autistic symptoms lessened or even disappeared when their fevers topped 101 degrees.

    I retreated to my basement, videotape in one hand, a bottle of Castello del Poggio Barbera D’Asti in the other. Why? Because 14 years ago, when my son was five, he ran a fever of 103 and EMERGED from autism, completely, for an entire day. I charged into his pediatrician’s office howling about this miracle cure, begging him to figure out how it could be permanent, and was told I was insane. Again, two years later, I saw the same thing happen: a nasty flu felled everyone in our household, but rather than making my older son glassy-eyed, it sharpened him and brought him out.

    This time, I was determined to be heard. I went not only to my son’s doctor but to others. I made phone calls, including to the National Autism Society, insisting we’d stumbled upon an enormous clue. I was turned away and treated like I was deranged.

    So I gave up.

    It was not, of course, the only thing I focused on in those years. There were vitamins, chiropractic treatments, and a strange, self-administered "poetry" regimen that I convinced myself would work. Yet, last week — reading about physicians nationwide heralding the so-called "fever effect" as groundbreaking news — I grew temporarily so disillusioned with the world and my paltry contributions to it, there was nothing to do but retreat.

    I drank the Barbera D’Asti with unquestioning ardor, even though it is, frankly, weird: a puckery sour cherry with undertones of raw carrot and chalk. This is not a traditional wine, but I don’t exactly live a "traditional" life.

    And I watched a few episodes of the soap that’s been feeding my desire for moral clarity for nigh on 20 years. Two people were trapped in an old bomb shelter (there’s always someone underground, it seems: symbolizing either hell or the pit of despair); several marriages were unraveling; there was a man dying of leukemia, a toddler undergoing surgery to have cochlear implants, a little girl separated from her father but living — unbeknownst to anyone — only three doors down. And through it all, no matter how bleak the circumstances, there was some measure of hope. This was especially true in the case of the show’s heroine: Erica Kane.

    This character is daytime TV’s Scarlet O’Hara. She’s faced rape, addiction, and kidnap by an evil Hungarian count. Yet, she’s plucky, that one. (Also gorgeous, a size 0, immensely wealthy, and always either naked or completely accessorized and beautifully dressed.) No matter what the problem — whether her tenth divorce, her grandson’s deafness, or her son-in-law’s sudden disappearance — she arises ready to fight. Realistic, no. But dammit, after I’ve drunk a couple glasses of wine, she can seem an inspiration.

    So what, exactly, should I take from this, I wondered? That the answer is to have sex with a series of brothers? Become addicted to painkillers and get admitted to a high-priced rehab? Ride a stallion over the grounds of nearby palace while wearing a $3,000 evening gown and high-heeled shoes?

    Probably not. The lesson I chose to take from it, after I’d hidden out for a couple hours pouting and hating every single person in the known universe, was to try again. So I corked the wine, went to bed, had a strange set of nightmares, and got up the next morning to call a doctor and find out if — after all this time — the research they’re doing might help my nearly 20-year-old son.

    The appointment is tomorrow. If the guy refuses to help us, I think I’ll dump him down a well.

  • Long Day's Journey

    I’m an unreliable narrator. You should know this.

    Here are my flaws: I’m alternately delighted and devastated by other people (there is, for me, little middle ground); I look for meaning in everything I see, whether or not it exists; and I believe too fervently in my own ability to change circumstances, no matter what the odds.

    So it was with my older son, who came back to us from the Mayo Clinic in June, like a whiteboard wiped clean. We’d spent years treating him for autism — OT, PT, kinesthetic exercises, biofeedback, social skills programs, and DMG. He made remarkable progress until the age of 17, when, after treatment for depression he began to slide back and then went into a near-vegetative state. Eighteen months later, we took him to Rochester nearly dead and they returned him to us (for which I am profoundly grateful) exactly the child he’d been at five: mute, ritualistic, lost . . . .

    The thing about my son — about so many people with autism — is that he was very able to do things. Play chess, navigate the city, balance my checkbook, or bake a cake. Most of his brain was functioning just fine, but the area controlling his ability to communicate had been shuttered down or roped off.

    For the past three months, he’s been in a transitional post-high school program where one of his main activities seems to be riding the bus from class to the shopping mall, three miles away. The goal, I guess, is to teach independence. But the tedium of his days, frankly, drives me insane.

    "We could drop him off in St. Paul on a Sunday," I told my husband. "Give him 20 bucks, tell him to buy himself lunch, and I’ll bet you anything he could find his way back."

    "How sure are you?" my husband asked. At which point, I went to an ATM and withdrew a $20 bill.

    Last Sunday, on the first chilly day of winter, we took our nearly-20-year-old autistic son to Highland Park mid-morning and left him with instructions to find buses that would lead him home and call us if something went wrong. Then we waited. . . .and I spent the afternoon pacing, wondering how crazed and wrong and stupidly hopeful a mother can be.

    Around 5, about an hour after a wet snow had begun to fall, my phone rang. I was certain it was he, calling to say he was cold and ask me to pick him up in some remote and unkown locale.

    It was my son, but he was calling only to ask if I was ready to see him at home. He’d had a pleasant time wandering through the shops in Highland Park then found a bus bound for Minneapolis, transferred twice, treated himself to a calzone at Old Chicago in Uptown around 3:30 and had been killing time ever since.

    He arrived a short time later. And all this is true: He speaks little, and only haltingly, but there was a broad smile on his face as he took 20 minutes to describe his day. I tried not to cry and opened a Collection des Chateaux de Bordeaux.

    I’d love to draw a parallel here; the essayist in me is dying to tell you I chose this wine because it, too, is put together in an utterly unconventional way, mixing the best Bordeauxs of any one year to come up with a blend of Merlot and Cab that’s instantly drinkable but also ages well. That would, however, be a lie: I had none of this in mind when I uncorked the bottle and took the first sip. I really only wanted something to do as I waited through the pauses in my son’s story, never mind the dry, oaky flavor and piano notes of pepper, tannins, and plum.

    There is no real moral to this story. My husband drove my son home to the place where he lives with his father, then returned and gently took my glass away. The bottle was nearly empty and I was bleary, limp with wine and relief. I still believe I can change the world if I just wish hard enough. Sometimes it is that glass at the end of the day which comforts me after I find out the world is not this way — none of us is so powerful.

    And other times, it’s the glass I drink in wonder because, after all, it’s just possible we are.