Sunday, December 16, 2012
It's Not Just About Guns, It's Also Got To Be About Autism
I've had a difficult time reading some of the coverage on the Newtown mass killings. Part of it is my heart is torn between the parents of all the murdered children, the heroic deaths of the female staff who tried to stop or mediate the carnage, and then finally, Adam Lanza and his mother. I've found myself getting really frustrated with commenters and pundits who seem to think Adam Lanza was a product of video games, or goth interests, or demonic influence. I've been just as frustrated with all the talk about gun control when in point of fact too many of these mass shootings are equally products of poor mental health services and the stigma surrounding mental illness and the increasing prevalence of autism. Maybe it's just too soon after the event for people to start thinking productively.
I did come across one powerful piece of writing that I want to share with readers. Call it part of my campaign to get some compassion moving about a mental health issue that is not going away, is getting worse and is truly a parent's worst nightmare. Originally written for The Anarchist Soccer Mom, I found it on Huffington Post. It's brilliantly written by Liza Long.
"I am Adam Lanza's Mother"
By Liza Long
Three days before 20 year-old Adam Lanza killed his mother, then opened fire on a classroom full of Connecticut kindergartners, my 13-year old son Michael (name changed) missed his bus because he was wearing the wrong color pants.
“I can wear these pants,” he said, his tone increasingly belligerent, the black-hole pupils of his eyes swallowing the blue irises.
“They are navy blue,” I told him. “Your school’s dress code says black or khaki pants only.”
“They told me I could wear these,” he insisted. “You’re a stupid bitch. I can wear whatever pants I want to. This is America. I have rights!”
“You can’t wear whatever pants you want to,” I said, my tone affable, reasonable. “And you definitely cannot call me a stupid bitch. You’re grounded from electronics for the rest of the day. Now get in the car, and I will take you to school.”
I live with a son who is mentally ill. I love my son. But he terrifies me.
A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books. His 7 and 9 year old siblings knew the safety plan -- they ran to the car and locked the doors before I even asked them to. I managed to get the knife from Michael, then methodically collected all the sharp objects in the house into a single Tupperware container that now travels with me. Through it all, he continued to scream insults at me and threaten to kill or hurt me.
That conflict ended with three burly police officers and a paramedic wrestling my son onto a gurney for an expensive ambulance ride to the local emergency room. The mental hospital didn’t have any beds that day, and Michael calmed down nicely in the ER, so they sent us home with a prescription for Zyprexa and a follow-up visit with a local pediatric psychiatrist.
We still don’t know what’s wrong with Michael. Autism spectrum, ADHD, Oppositional Defiant or Intermittent Explosive Disorder have all been tossed around at various meetings with probation officers and social workers and counselors and teachers and school administrators. He’s been on a slew of antipsychotic and mood altering pharmaceuticals, a Russian novel of behavioral plans. Nothing seems to work.
At the start of seventh grade, Michael was accepted to an accelerated program for highly gifted math and science students. His IQ is off the charts. When he’s in a good mood, he will gladly bend your ear on subjects ranging from Greek mythology to the differences between Einsteinian and Newtonian physics to Doctor Who. He’s in a good mood most of the time. But when he’s not, watch out. And it’s impossible to predict what will set him off.
Several weeks into his new junior high school, Michael began exhibiting increasingly odd and threatening behaviors at school. We decided to transfer him to the district’s most restrictive behavioral program, a contained school environment where children who can’t function in normal classrooms can access their right to free public babysitting from 7:30-1:50 Monday through Friday until they turn 18.
The morning of the pants incident, Michael continued to argue with me on the drive. He would occasionally apologize and seem remorseful. Right before we turned into his school parking lot, he said, “Look, Mom, I’m really sorry. Can I have video games back today?”
“No way,” I told him. “You cannot act the way you acted this morning and think you can get your electronic privileges back that quickly.”
His face turned cold, and his eyes were full of calculated rage. “Then I’m going to kill myself,” he said. “I’m going to jump out of this car right now and kill myself.”
That was it. After the knife incident, I told him that if he ever said those words again, I would take him straight to the mental hospital, no ifs, ands, or buts. I did not respond, except to pull the car into the opposite lane, turning left instead of right.
“Where are you taking me?” he said, suddenly worried. “Where are we going?”
“You know where we are going,” I replied.
“No! You can’t do that to me! You’re sending me to hell! You’re sending me straight to hell!”
I pulled up in front of the hospital, frantically waiving for one of the clinicians who happened to be standing outside. “Call the police,” I said. “Hurry.”
Michael was in a full-blown fit by then, screaming and hitting. I hugged him close so he couldn’t escape from the car. He bit me several times and repeatedly jabbed his elbows into my rib cage. I’m still stronger than he is, but I won’t be for much longer.
The police came quickly and carried my son screaming and kicking into the bowels of the hospital. I started to shake, and tears filled my eyes as I filled out the paperwork -- “Were there any difficulties with… at what age did your child… were there any problems with.. has your child ever experienced.. does your child have…”
At least we have health insurance now. I recently accepted a position with a local college, giving up my freelance career because when you have a kid like this, you need benefits. You’ll do anything for benefits. No individual insurance plan will cover this kind of thing.
For days, my son insisted that I was lying -- that I made the whole thing up so that I could get rid of him. The first day, when I called to check up on him, he said, “I hate you. And I’m going to get my revenge as soon as I get out of here.”
By day three, he was my calm, sweet boy again, all apologies and promises to get better. I’ve heard those promises for years. I don’t believe them anymore.
On the intake form, under the question, “What are your expectations for treatment?” I wrote, “I need help.”
And I do. This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense.
I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness.
According to Mother Jones, since 1982, 61 mass murders involving firearms have occurred throughout the country. Of these, 43 of the killers were white males, and only one was a woman. Mother Jones focused on whether the killers obtained their guns legally (most did). But this highly visible sign of mental illness should lead us to consider how many people in the U.S. live in fear, like I do.
When I asked my son’s social worker about my options, he said that the only thing I could do was to get Michael charged with a crime. “If he’s back in the system, they’ll create a paper trail,” he said. “That’s the only way you’re ever going to get anything done. No one will pay attention to you unless you’ve got charges.”
I don’t believe my son belongs in jail. The chaotic environment exacerbates Michael’s sensitivity to sensory stimuli and doesn’t deal with the underlying pathology. But it seems like the United States is using prison as the solution of choice for mentally ill people. According to Human Rights Watch, the number of mentally ill inmates in U.S. prisons quadrupled from 2000 to 2006, and it continues to rise -- in fact, the rate of inmate mental illness is five times greater (56 percent) than in the non-incarcerated population.
With state-run treatment centers and hospitals shuttered, prison is now the last resort for the mentally ill -- Rikers Island, the LA County Jail and Cook County Jail in Illinois housed the nation’s largest treatment centers in 2011.
No one wants to send a 13-year old genius who loves Harry Potter and his snuggle animal collection to jail. But our society, with its stigma on mental illness and its broken healthcare system, does not provide us with other options. Then another tortured soul shoots up a fast food restaurant. A mall. A kindergarten classroom. And we wring our hands and say, “Something must be done.”
I agree that something must be done. It’s time for a meaningful, nation-wide conversation about mental health. That’s the only way our nation can ever truly heal.
God help me. God help Michael. God help us all.
First, I want to thank Liza Long for writing this piece. It needs to be read by as wide an audience as possible. This country will never truly understand what happened in Newtown and Aurora and Virginia Tech and on and on, unless we are willing to go inside the families of these boys and inside the minds of the boys themselves. Their brains do not function like our brains and because of that, they do not live easily in our world. The mental health establishment can provide fairly safe environments but consistently applicable treatment is another story. In the meantime families become prisoners of their children, they turn inward, they isolate, and they burn out. By the time too many of these boys reach 18, if some form of therapy hasn't mitigated their symptoms, there aren't very many alternatives, especially if their families are burned out. They are now considered independent legal adults and with high functioning IQ's, quite able to buy guns, strategize with acumen, and yet they are far from adults in most meaningful ways.
In a very real sense, they don't have ego personalities. They have avatars. They are just as easily their video gaming personality as they are their 'social' personality, and for a minority of them, they are much more comfortable and secure in their video gaming avatar, in which they have a real sense of control and where their focus is strong enough to filter out external stimuli and where they succeed, than they are in their 'social avatar' where an innate inability to filter out external stimuli makes them feel highly vulnerable, inclined to OCD behaviors, and where they need of a lot of repetitive structure. It's like getting lost in the woods for a normal person, except for these boys, until a situation becomes totally and completely the same, they will continually be lost in the woods. They act out in frustration and uncontrolled rage is just one second away.
Descriptions of Adam Lanza in high school illustrate some of this. He was known to wear the same types of clothes buttoned up the same way every day. He would walk down halls hugging the wall and carrying a brief case 'like and 8 year old carries a teddy bear'. He was known to be unable to detect physical pain and in his high school that became a planned for safety issue. Imagine not being able to detect physical pain because your can't focus on that particular perceptual stimuli. The pain signals were probably there, he just couldn't filter out everything else to identify them. His tech club coach also stated he would 'fly off', meaning Adam would go into a sort of catatonic state, and they would have to call his mother to bring him out this state. This is sensory overload resulting in disassociation. I've seen this happen with adults that have high high anxiety levels. It's either full blown panic attacks or disassociation.
Adam was also at the age, late teens to early twenties, where we generally see the onset of full psychosis in schizophrenia. A childhood diagnosis on the autism scale can be a precursor to full blown adult schizophrenia. This is the same profile shown by the Aurora shooter and the Gifford's shooter. Pyschosis makes a great deal of internal logical sense to the person experiencing it and not much sense at all to outside observers. Unfortunately there is usually enough survival skill in the psychosis that observers blow off a lot of strange behavior and don't connect the dots until after it's too late. Monday morning quarterbacking is pretty useless.
We need to get serious about tracking these kids because if they move into full psychosis how they will play out that psychosis is as idiosyncratic as they are as individuals. We need to get very serious about giving their families some legitimate help because treatment is astronomical, especially when it involves meds whose cost can be one thousand dollars or more a month for one med, and most of them are on a cocktail of meds. We need to explore other treatment avenues and spend serious bucks on researching why autism is becoming so prevalent. 1 in 88 kids are now diagnosed with some form of disability on the autism scale. That's a 78% increase in nine years. This story is not just a wake up call for gun control legislation. It needs to be a wake up call for a serious mental health issue that keeps increasing in our children. If we really care about our children and their families we need to put the same kind of intense effort into autism that we did for HIV/AIDS. Or our mentally confused kids will keep killing our kids.