3/27/09 - Rally & Monster

They just announced that autism insurance rally will be on April 28th at the Capitol..more details will follow but if anyone is interested in attending,please let me know. As I mentioned in previous blogs, the bil now resides with a different committee and there is a lot of hope it will be brought to a vote this year. Below is a link that explains how a bill becomes a law...

http://www.youtube.com/watch?v=mEJL2Uuv-oQ

Ok, the following is an article/story that is going aruond my autism michigan list serv. I will warn you that if you have any emotional attachment to Tyler, this article will be extremely hard to read so certainly do not feel obligated. You may wonder then why I post it, I'm not sure I can explain it in words but I will try. When I knew Tyler had autism but he hadn't been diagnosed, many people, in trying to support me, would say, oh I'm sure he'll be fine, may be he's just a late talker, he's just independent, etc. And althuogh those were all with good intentions, it made it hard on me like no one was willing to accept what was actually going on. I'm a realist and although I hope with all my hope and might that Tyler will lead life as an independent adult, happy and healthy and with a family of his own, there is no guarantee. In fact, things can go terrible wrong for some, just as they can be miraculous for others. on Saturday, Tyler grabbed a hold of my pig tails adn pulled wiith all of his might, on Sunday, he grabbed my ears and yanked down on them, both times while he clenched his jaw and his head shook a bit. The physical pain was very minor, but the emotional pain/worry is substantial; will this side of Tyler continue, will it be more often, what will I do when he is bigger than me? And of course the please god, please don't let him hurt anyone. That's part of the reason we hired a sitter to watch him at his party or we watch him so closely in public around other kids, we are so worried he'll hurt someone. So I guess I'm attaching this article for those of you like me who are information junkies, who do not want to be surprised by anything, who wants to attack autism at full force as it is a miserable beast that has a hold of so many. So, please believe me when I say this is a very difficult read, I shed lots of tears and specifically asked Steve not to read it (as he's on the list serv as well.

The monster inside my son
For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.
By Ann Bauer
Mar. 26, 2009 |
On Feb. 14 I awaken to this headline: "Professor Beaten to Death by Autistic Son."
I scan the story while standing, my coffee forgotten. Trudy Steuernagel, a faculty member in political science at Kent State, has been murdered and her 18-year-old son, Sky, has been arrested and charged with the crime, though he is profoundly disabled and can neither speak nor understand. Sky, who likes cartoons and chicken nuggets, apparently lost control and beat his mother into a coma. He was sitting in jail when she died.
This happens to be two days after my older son's 21st birthday, which we marked behind two sets of locked steel doors. I'm exhausted and hopeless and vaguely hung over because Andrew, who has autism, also has evolved from sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.
Now, reading about this Ohio mother, there is a moment of slithering nausea and panic followed immediately by a sense of guilty relief.
I am not alone.
- - - - - - - - - - - -
Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.
We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level -- from ages 12 to 17. Andrew aced algebra, became fluent in Spanish, played the cello in the school orchestra, and competed on weekends in tournament chess. I occasionally even referred to him as "cured."
But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us. We tried a series of medications, but that only made him worse.
Once during this phase, he beat me. A neighbor heard me screaming and called 911. But I blamed this on the drugs. Despite everything, my son had always been gentle and sweet. This was no twisted adolescent squirrel killer who kept a pile of carcasses under his bed.
On the day he should have graduated from high school, Andrew was instead being treated in a psychiatric ward at the Mayo Clinic. But he seemed to improve, and we were hopeful. Upon release, he was placed in a series of behavioral health centers and group homes. This is where his real education began.
He'd quit progressing in school, but now my son soaked up new information like a toddler learning to talk. Every placement in a succeedingly tougher environment gave him new skills. He shoplifted like a pro, traded his belongings for sexual favors, and dined and dashed so often some local restaurants had his picture posted in their kitchen under the words, "Don't serve this man." I told myself at least he was thinking, making his own bad choices, experiencing adult consequences. A part of me was even proud.
But he'd also quit reading, conversing, learning people's names, or keeping track of the day of the week. He ate like some gnashing beast: stuffing food into his mouth until his cheeks bulged and food dribbled out onto his clothes. And after moving to the rural group home selected by a judge because it was miles from restaurants or businesses where he could steal, Andrew morphed again, the warty monster from a Grimm fairy tale, demolishing everything in his path.
His destruction was utterly senseless yet brilliantly thorough: He submerged his computer, stereo and iPod in water; threw puzzle pieces and Styrofoam cups into the toilet and flushed them, plugging the pipes literally dozens of times a week; and urinated on every square inch of his room: bed, walls, floor, closet, everything but the ceiling and that only because he had not (yet, I suspect) figured out how.
When I asked him why he did these things he would say, eyes narrow like a night creature, "I don't like being caged."
- - - - - - - - - - - -
Then came Sept. 2, last fall. This was to be Andrew's first day of his final year in public school. He hated school -- a so-called transition program -- because it was demeaning. Lessons about how to cross streets and take buses and punch time clocks. My son had completed pre-calculus; now he was being taught how to make correct change.
But there was nowhere else for him. He'd failed to hold the two jobs my husband and I had found for him; the private job coach we hired said Andrew was the most challenging client he'd ever worked with -- right before he quit. We were financially tapped out and the state would not pay for vocational training until Andrew turned 21. Transition school was the only choice.
I'd explained all this. But when I showed up at the group home that morning, he was drinking coffee and pacing and still not dressed. I went into his room, took some clothes from the closet, handed them to him. And hinting at what he was about to do only with a small sigh, as if to say, "I've had enough," my son picked me up and threw me across the room.
I had three broken ribs and a bit of damage to my liver that made my doctor fret. Still, who among us hasn't wanted to toss our mother across the room when she's nattering on and making cheerful sounds in the morning? I dismissed it as an aberration until a couple weeks later when Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand. He went on to attack several staff members at the group home, grope the mentally handicapped young women who attended his transition program, and finally to accost his 14-year-old sister right in front of my eyes.
It was Christmas Day. I watched him enter the room and fix his gaze on my daughter. Then he rushed her, and I screamed. My husband -- two inches shorter and 50 pounds lighter -- somehow intercepted Andrew and knocked him to the ground. After he had been escorted from our family dinner in restraints, we sat at a table heaped with food growing cold, where my elderly parents wept and my daughter shook silently. I comforted them all and after that was done -- the meal reheated and people eating -- I drank every drop of alcohol in sight, even draining the half-full wine glass my mother always left. The next morning, through a headache of steel knives and bad music, I got on the phone.
I called the man who was supposed to be my son's psychiatrist to ask for an emergency appointment. Andrew was becoming dangerous, I told the nurse, and he was going to hurt someone. But the doctor was too busy; he was on vacation. There might be an opening in late January. No one else was available, no matter how many numbers I dialed.
Secretly, as if committing a sacrilege, I searched online using keywords such as "autism" and "violence" and "murder." What I found was confusing. There were roughly a dozen recent articles about heinous acts committed by people with autism and Asperger's syndrome, but each was followed by editorials and letters written by autism advocates vigorously denying a link. There were a few studies from the '80s and '90s, but the results -- when they showed a higher rate of violent crime among people with autism -- appeared to have been quieted or dismissed.
On the other hand there were, literally, thousands of heartwarming stories about autism. A couple of the most widely read were written by me. For years I had been telling my son's story, insisting that autism is beautiful, mysterious, perhaps even evolutionarily necessary. Denying that it can also be a wild, ravaging madness, a disease of the mind and soul. It was my trademark as an essayist, but also my profound belief.
Now, despite the constant calling and late-night research, I could not accept what was happening. I could not write about it; I could not speak of it. Not even my closest friends knew what was happening inside my life.
- - - - - - - - - - - -
My husband and I were on our way to an inauguration party the night Andrew finally came apart.
It was January, a week of cold so wicked I was dressed in long underwear and wool sweaters, scarves, a parka, and two sets of gloves. It took me a long time to scramble through all the layers when my cellphone rang. But missing the call was not an option. I'd already had four panicked messages from the group home that day: Andrew's violence was escalating. They were mandated by state law to stay inside because of the weather, and he was going stir crazy, terrorizing the house. No one knew what to do.
"Yes?" I answered.
"I'm so sorry," is how the voice on the other end began.
It was Andrew's counselor, calling to describe the situation. My son was in an ambulance circling the Twin Cities, sedated and strapped down to a bed. He'd been in there for a couple of hours and the medics just kept driving; they couldn't stop because all the psych wards were full.
"Yes," I croaked again. Other than this one low word, I'd been struck mute.
They'd had no choice but to call the police, the counselor said. After dinner -- which was served in the group home at 5 o'clock, leaving long hours to kill before bed -- Andrew made a pass at a young female staff member. Petite, blond, around his age. The girl rebuffed him, reminding him probably for the 8,000th time that day about the "no touching" rule. And then he went off.
My son reportedly leapt on her -- his 260-pound body surprisingly nimble -- one hand around her throat, choking her, and the other in her mouth, pressing down, cutting off her air two different ways. It took four men to pull him off and by this time the girl had passed out.
"Is she all right?" I asked. And this mattered for so many reasons: There was the basic human one, then the legal, also the fact that my own fate hung on the answer. While lying awake earlier that week, I'd made the decision that if my own child were to kill someone I, too, would have to die.
"She's bruised," he said, "and scared."
That's when I breathed. Nothing irreversibly evil had yet been done.
My husband wanted to turn around. But I was afraid that in the quiet of our home I might sit and think about my perfect, rosy-cheeked baby and actually go insane. So instead we went to the party and, as on Christmas, I drank as if it were a task I need to accomplish. Steadily, with steel. While my husband watched over me with his worried face, I hugged people and talked and tried to participate in a game the host had devised: Obama trivia. What movie did he take Michelle to see on their first date? Which brand of computer does he use? How big are his feet?
I failed to answer a single question and wondered why everyone around me seemed to know these things. Where had I been? Through my shimmering stupor, I surveyed the crowd of happy, shining faces. People were wearing buttons, T-shirts, even necklaces that spelled out "hope." This struck me as sinister and somewhat rude. Hope was bullshit. Hope was exactly what had been lost.
In the car on the way home, I asked my husband if I had fooled everyone at the party. Was I speaking normally? Did I at any point shout or cry or whimper? He assured me I had not. But for the few moments at the end when I'd looked as if I might collapse, I'd been pale but appropriate.
"I'm sure I'm the only one who knew," he said, shifting so the seat made its cold, leather groan and taking my hand.
I thanked him and leaned back, thinking dumbly that, of course, there was one thing he didn't know: I'd been secretly stockpiling the sleeping pills my doctor prescribes like Pez. I had about 80 saved up, which would probably be enough. The ambulance was still out there, driving through the dark night on frosted roads, holding my son inside. For now I could live. But the following morning I recounted my supply, just in case.
- - - - - - - - - - - -
Back when Andrew was in junior high school, my mother had a friend whose adult son had only recently been diagnosed with autism. He'd been dysfunctional since childhood, failing at school, unable to make a friend or keep a decent job. At 35 he was still living at home, collecting carts at the local grocery store, and taking anticonvulsants (Tegretol was the unofficial treatment of that era for outbursts) to control the violent urges he'd been having for 15 years.
"You think he's better now," my mother's friend once said as we watched a young, laughing Andrew out the window, playing tag with his brother and sister in my parents' backyard. "But wait 'til he's older. Then you'll understand. "
I hated her and was furious that she wished for our downfall -- also that her dumb, psychopathic son had been given the same label as my beloved child. Autism had become oddly fashionable; my mother's friend was wealthy. Clearly she'd gone "diagnosis shopping." My son, I vowed, would be nothing like hers.
When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.
But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take.
Monday, I went to see my son. He was in a bare white cell behind a steel door with a window, like Hannibal Lecter. The only thing missing was the mask. Two male nurses and Max, my 18-year-old linebacker son, walked with me into the room. Andrew was beached on a bed, his glasses the only thing on the shelf alongside. I touched his shoulder and woke him, taking his hands after he'd lifted himself to sit. "I'm here, sweetheart," I told him. "I want to help."
He looked at me with bug-eyed wonder and squeezed my hands, hard, "I might kill you," he said. That's when Max pushed his way between us and ordered me from the room. Sobbing, he wrestled his brother to the bed and held him there.
I spent Tuesday at a friend's house, as planned, in front of the TV, watching the Obamas walk and wave. Once, when someone asked why I was so quiet, I mentioned that one of my children was in the hospital, quite ill. She touched me and said something kind. I knew she was thinking of something like leukemia and I wanted to tell her I would hack off my right arm in return for something as simple as cancer. The flickering beauty of a sad, pure, too-early death sounds lovely. Instead I nodded, silent and dumb.
The one thing I held onto, through all of this, was the sudden appearance of this county psychiatrist: a small, bespectacled, Dustin Hoffman-ish fellow who’d spent years on a kibbutz before going to medical school in middle age. I found him magnetic, I trusted him. He became my talisman, my Obama, the only reason to hope. It wasn't that he had any magic solutions -- I've learned by now that no one does -- but he was openly upset, diagnosing Andrew simply as "someone in pain."
We sat in the doctor's lounge and he gave me a slice of banana bread to eat while he kneaded his forehead and read his notes. When he asked me what I wanted him to do, I told him: Whatever it takes to make my son stop. The threat of harm to my son's body was superseded by black stains on his soul. The doctor agreed, but he had made a list in ascending order of risk: Ativan, high-dose Prozac, Depakote, electroshock, Clozaril, Riluzole. A drug called Lupron.
I reached for my single semester of Latin. "Lupron? You want to take the werewolf out of him?"
"Exactly," said the Israeli. "But it's our last resort."
There were days spent in court, one swimming into the next, like a series of nightmares. Because my son was vulnerable, nothing could be done without a judge's order. Exhausted after this process, my husband and I went to Chicago and spent three days walking in icy sunlight, eating in no-name diners, going to sleep at 9 p.m. By the time we returned, Andrew had been given buckets full of dangerous, doping drugs and two sessions of ECT.
When we arrived at the hospital, he shuffled sleepily out of his now-unlocked room. We gave him money to order pizza (it turns out Domino's delivers to the psych ward), a sketchbook and pastels, two books. He could have nothing sharp, no cords. This ruled out a CD player, laptop, or ballpoint pen.
I asked tentatively if he remembered what he had done and suddenly he began to cry, tears running down his giant, furry face, jeweling his beard.
"Beware," he said through ragged breaths. "I'm bad now, I can feel it. I can't help the things I do."
- - - - - - - - - - - -
Whether there is a definitive link between autism and violence -- between Trudy Steuernagel' s situation and mine -- I cannot say.
And even if it exists, the cause is not clear. Our adult son's behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don't know.
The chairman of Trudy Steuernagel' s department rose at her memorial service to proclaim, "Autism doesn't equal violence." And this probably is mathematically correct: Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship. Neither Sky nor Andrew means to be murderous -- of this I am sure -- but their circumstances, neurology, size and age combine to create the perfect storm.
It is warmer, finally. Outside my window ice is melting off skeletal trees. I sit in the pale morning light, drinking tepid coffee and reading about this woman whom I suspect I would have liked. A fellow academic and writer, Steuernagel, too, insisted on finding beauty in autism. Her legacy includes an editorial about Sky's loving nature and relevance, how he led her through life along "a trail of sparkles."
Mine, I decide, must be in part to break the silence about autism's darker side. We cannot solve this problem by hiding it, the way handicapped children themselves used to be tucked away in cellars. In order to help the young men who endure this rage, someone has to be willing to tell the truth.
So here it is.