Violence and Autism

The monster inside my sonFor 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 BauerMar. 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 Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4.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.

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Behavior Wheels

I just downloaded a Behavior Wheel to help me in my Autistic Support Classroom. It looks like an excellent visual tool to help with the children's behaviors. I can create a separate wheel for each child that lists their typical misbehaviors, such as: hitting, screaming, throwing things, running away and arguing with the teacher. I can then program different consequences such as write a sorry note, do three nice things, give three compliments... that they can do after their time out (if necessary). It's actually pretty cool the way it works, you click the mouse to spin, lights flash and a sad noise plays, then the consequence comes up. I think the children will accept their consequences more readily from this wheel.
I am also programming it as a reward wheel. I'm putting in good behaviors such as: sharing, cleaning up, listening the first time, great eye-contact, good manners, good working and being a great friend. So when I catch the students doing one of these behaviors, they get rewarded by spinning the wheel. Consequences such as: extra computer time, extra library time, extra recess time and prize box choice, will come up. Hopefully I will be using it more as a reward system to encourage positive behaviors. Here is the link to the behavior wheel http://www.better-behaviour.com/?hop=schwarox.

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New Money for ABA in PA

I live in Pennsylvania and I just read that Governor Ed Rendell signed a new bill into law that gives $36,000 a year for Applied Behavior Analysis (ABA) and other Autism therapies. It requires insurance to cover the treatment for up to 21 years and also requires the state to pick up the bill, if the person doesn't have insurance. There are so many therapies, speech, physical, occupational and behavioral, that a person with autism needs, its about time the government helps out a bit. Autism advocates and Speaker of the PA House, Dennis O'Brien are to thank for getting this bill started, noticed and passed. Not all of the states have autism legislation, you can click on this link to see if your state has any. http://fmatlas.com/view/msgold123/20070527_StatesThatHaveAutismRelatedLawsAndAreConsideringThem
If your state does not, consider writing a letter to your local congressman, everything starts with one person's actions.

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Blind with Autism

I was watching an episode of Penn and Teller's Bullshit about Disabilities. It was about how the ADA causes people with disabilities to be more dependent on others than learning to adjust to life better. The one woman disagreeing with Penn and Teller patrolled parking lots to make sure no one parked in handicap parking spaces without the proper tags. She was really passionate about this because her daughter has severe Autism and is also visually impaired. I really wish the show was more about that but they kind of just breezed over that.
I saw the show maybe two nights ago and I still can't stop thinking about this girl. People with Autism tend to have really strong visual needs because they have aditory procesing disorders. I can't imagine how confused this girl must be. I'm confused, with many questions:

  • Do they make socail stories in Braille?
  • Is there a textured board or something that she uses for a tactile schedule?
  • Is there a special school for her?
  • Does anyone understand how to communicate with her?
  • Is she completely lost in her world of Autism?
  • What is her life like?

Going blind has always been my biggest fear. I never even imagined it in conjunction with Autism. My mind is blown.

Casein Free Diets

Andrew is beginning his Casein free diet and has been taken off of Risperol. What a dramatic change for the worse! He is acting like he did 2 years ago. I had to pull out his kindergarten social stories today. At lunch, he was angry about a number of things including drinking OJ instead of milk. So he poured his juice all over himself and threw his lunch off the table. I watch 3 children at lunch, so it was pretty stressful removing him from the environment so none of the other children got hurt. I was worried that the other 2 were going to wander off. Only the one wandered but she went to the right place. I love independent children :)

Wild Mood Swings

Things have been very rough with Andrew lately. He has PDD.NOS. He is in second grade but follows a first grade curriculum which is at times too difficult for him. Yesterday, I follwed him through his day, simply observing and not interacting, to collect data on his progress. It averaged out that he spends only about 56% of the day attending to what is happening the rest of the time is spent being emotional, impulsive or lost in his own head. It was strange to sit there with a stop watch timinghow long he could focus on an activity. I was surprised to see how little of his time in school he actually engages in learning or interacting with others.

Today, he probably spent less than 56% of his time engaged. He stims orally so often that his lips and face around his lips are chapped and bloody. At one point he picked his nose and wiped the boogers on his desk. I made his get up, use a tissue and wash his hands. While he was washing his hands, I used a Clorox towel to wipe his desk clean. In the few seconds it took me to put the towel in the trash, he was back at his seat rubbing the wet desk on his raw mouth! He went to the nurse and she gave him some Vaseline. When I was in charge of Andrew's behavior plan, he had a water bottle to drink from when he needed something to do with his mouth. This year, his teacher decided she wants complete control of him and did away with most of my interventions and replacement behaviors. She believes that just being really strict with him, saying "put your hands down or leave your mouth alone" anytime he touches his mouth, will stop the behavior. She is my supervisor and his Autistic Support teacher so I don't argue. But I am so sad when I see his poor face. I wrote a note home to his parents about my concern for his face, hopefully they agree. The teacher will not be in tomorrow so I think I will bring out te water bottle once again.

Aside from the oral stimming he has been crying and injuring himself for attention. I was afraid he broke his hands today when he slammed both down on the desk. It was such a loud slam and he screamed like crazy after it happened. It is so difficult to ignore attention seeking behaviors like these. After he slammed the desk, he flipped it over and started throwing the contents around the room. I calmly said " throwing tantrums is preschool behavior, second graders clean up their messes, take deep breaths and calm their bodies down, so they can do things with their friends". He used to have tantrums that lasted for hours, but I learned that they can easily be prevented (in his case) by simply saying they cannot happen. He heard me, cleaned up the mess, started to cry, I took some deep breaths, he copied them and calmed himself down. I then smiled at him until he smiled back. This took about 3 or 4 minutes. He gave me angry eyes, I smiled and pointed to my mouth, his teacher smiled and pointed to her mouth. The two of us just kept smiling until he smiled. Then he was able to get up from his desk and join the other children.

Eliminating red and yellow dyes

Since the red dye #40 and yellow dye #5 have been eliminated from Jane's diet, I have seen very little erratic behavior. Before this diet I would have sheets of ABC charts filled up by the end of the week. Now I have filled up two for the entire month of October! She hasn't screamed nonsense or laid on the floor in a tantrum. It has been a pleasure to be around her. Lately, I have just been prompting her to talk to peers. There is even a girl in her class that came over and put her arm around Jane when the teacher was pairing kids up to let the teacher know to pair them together. I nearly cried. In the past, children would move away from her or tease her. She told me later that that girl is now her best friend and she hopes they can play at each other's houses. Honestly, I never thought she even wanted friends.

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