Psych meds drove my son crazy

At 17, my son was a funny, odd autistic boy. But a misdiagnosis turned him
into a violent, unpredictable man, and drove our family to the brink.

By Ann Bauer

May. 18, 2007 | This is a story with a hopeful ending. Lucky, even. But be
forewarned, you have to get through a lot of hopeless, unlucky crap before
you find it.

Here's how it all starts: My first-born son has autism.

Now that isn't hopeless or, in my opinion, unlucky. Autism isn't sick or
crazy. It's rigid and routine, a little eccentric. Autism is multiplying
columns of numbers easily while being unable to look anyone in the eyes;
listening to only one band's music, and always in the same order, for a
period of six weeks; refusing to eat anything orange. It's also being able
to remember the exact date and time you ate a bison burger in Chamberlain,
S.D., when you were 6. But there's a really charming side to all this, a
wonderful tilted perspective on life that, if you're a parent of autism, you
come quickly to enjoy.

I was a parent like this.

Until he was 17, my son was unique and funny and odd. He was difficult in
some ways but incredibly easy in others. He washed the family's dishes
precisely, went to bed at exactly the same time each night, and sorted our
mail into careful piles. He did fairly well in school -- above average in
math, a little below in social studies -- and spent his weekends playing
tournament-level chess. He was a loner, but sweet and articulate and very
close to his only brother.

Then junior year came. He met a girl, he went to a dance, he thought life
was better. And for a night it was. Then the dance ended, the girl decided
she was interested in someone else, and the boy became depressed.

Was this cause for alarm? I thought not. Teenage boys routinely get
depressed over girls and fickle friends and school dances. It was painful,
but I assumed it would blow over. When it didn't, after six months, I took
him to a psychologist who recommended a psychiatrist who put him on a
newfangled antidepressant she said would have the added benefit of
controlling some of his obsessive tendencies, like stacking the dishes and
sorting the mail.

I didn't want to control those things -- to me, these weren't symptoms, they
were characteristics of my son. And I'd fought for 17 years to keep him
drug-free. But the psychiatrist and the psychologist and several family
members insisted: He'd become unhappy, his routines were getting in the way
of his developing a social life. This pill, they said, would help him.

Instead, he gained 30 pounds and began to lose his mind.

It happened slowly, over a period of months. First his grades began to fall.
There were some random episodes of violence -- nothing major, just an
out-of-control moment here or there. A tendency to stand up from the dinner
table, after a full meal, and walk to Arby's for a snack. Eerie giggles that
seemed involuntary. A flat expression on his once-curious face.

Senior year, he started an after-school job at an auto parts factory but
lost it when he couldn't keep up with even the elderly workers. He stopped
speaking to his brother entirely and even hit him several times. He lost
interest in music, computers and chess.

I talked all this over with his father, my ex-husband, who said, "Maybe he
needs a man's attention. Let me give it a try."

So our now 18-year-old, autistic, depressed and quickly losing ground, moved
across town, to live with his father in a small, quiet apartment. My ex
worked odd shifts, so our son began wandering the city on foot, early in the
morning and late into the night. He told his dad about how he had to fight
the bad thoughts that were crowding in his head. And when he wasn't out
walking, he slept a lot -- around two-thirds of his life, in fact -- despite
the fact that he drank 12 to 15 cups of coffee a day.

Together, my ex-husband and I took our son to a highly respected
neuropsychology clinic housed in a suburban office building. The doctors
there even looked like bankers; they wore regular clothes and carried
clipboards and fancy pens embossed with the names of drug companies, rather
than stethoscopes.

After meeting our son twice, they conferred with the original psychiatrist
(who, we discovered later, was employed by the same large healthcare
conglomerate) and came up with an altogether new diagnosis. This wasn't
autism at all, they told us, but "psychomotor slowing" -- a form of
schizophrenia. Our son was just unlucky, they said sadly, the victim of two
devastating neuro-behavioral disorders. Completely unrelated.

It was critical that we begin treating him immediately; they couldn't stress
this strongly enough. We were given a prescription for a brand-new
antipsychotic medication with the inspiring name Abilify that was
direct-to-consumer advertised in Newsweek and Time magazine. It featured a
woman gazing into an azure sky and copy promising the drug would work on the
brain "like a thermostat to restore balance."

We were skeptical. But the experts were firm: He would continue to
deteriorate if we didn't catch this now. Did we want our son to end up
institutionalized? In jail? Sick to our stomachs and desperate, we gave him
the drugs. Then he got much, much worse.

He stayed with me on weekends, and twice during the workweek he would come
to my house for dinner. We would sit at the table -- my husband (his
stepfather), his brother and sister and I -- but my once-reserved older son
would only stand over us acting crazy. Humming, shifting foot to foot,
screaming if anyone touched him or tried to move him to the side. Often, he
would talk back to the people who were speaking to him inside his head,
telling him to do things. He would not, however, say a word to us.

He wasn't eating meals. But he was eating -- constantly. After graduating
from high school, during the period when he was still holding the voices at
bay, he'd started a government job through a disability work program. I'd
given him a car and helped him open a checking account during this period of
lucidity. Now, he began stopping at fast food restaurants on his way home
from work to consume nachos, burgers, brownies and lattes. He ate with his
hands and wiped them on his clothes, which he'd quit washing. He stopped
bathing altogether.

We discontinued the Abilify, tapering it off as directed. Two days after
taking the final pill, he got out of bed at 2 p.m. and stood in one place
for a solid hour. My husband had taken our daughter roller-skating; our
younger son was at work. It was just me, alone with this 6-foot-3-inch man
I'd given birth to but no longer knew. I put my hand on his back and tried
to push him forward, toward his shoes. And he turned to look at me -- his
eyes empty and cold -- then grabbed me by both arms and beat me until the
neighbors heard me screaming and called 911.

You think you know what crazy is, but you don't. Not unless you've been
there.

In the movies, it might be depicted as quaint or flat-out violent. But
whichever way it goes -- Hannibal Lecter or the wacky old ladies of "Arsenic
and Old Lace" -- crazy is portrayed as consistent, interesting, narratively
coherent. Not so in life.

In reality, crazy is like war. It's tedious for long periods of time, until
it turns around and is devastating. It's random, senseless, all-consuming,
financially draining, destructive, ugly, sickening and gross.

It's standing in the front yard wearing nothing but torn underwear and
trying to control the thoughts of people who drive by. It's saying yes to
every question, no matter what the real answer. It's drinking compulsively,
straight from the faucet, then spewing a stream of clear-water vomit like a
geyser.

It's needing to be tracked down at 5 a.m. and being found, more often than
not, at a 24-hour convenience store drinking free coffee and eating package
after package of mini-doughnuts. It's getting escorted out by security
guards after hanging out at Target for nine hours. It's standing directly in
front of a childhood home and swaying until the people inside, the ones who
now live in the house, call the cops.

For the people who live with crazy -- who love crazy -- it means answering
the phone over and over to say, "Yes, I'm so sorry, where is he? Please
don't do anything yet. I'm coming." It means never finishing a movie or a
book or a television show. Never eating a meal in peace. Suggesting showers
that won't be taken and changing shit-stained sheets and throwing away
clothes that have become too soiled to wash clean. And it means going to bed
each night with a queasy feeling that something is looming over you, left
undone.

It's paying over and over: for the library books that were lost, the iPod
that was worn in the shower, the high-priced vitamins and health foods, the
therapies and lessons and groups that are supposed to help but never do.
It's including crazy on every family outing even though you know how it's
going to end because it's the least wrong thing to do in an equation that
contains no right.

It's also watching people you once loved fade away. Answering their periodic
phone calls, full of concern, all their questions about what you've done
already and what you're planning to do now, which medications you've tried,
why you haven't called the doctor they recommended, whether you've read
"Dear Abby" today where a letter about something remotely similar appeared.

But it's knowing, too, that after the phone call, they'll be gone. You won't
be asked to the next neighborhood get-together or family event. They're
worried, yes, but they can't let their lives be interrupted by crazy. They
have to maintain their own sanity and keep the chaos from mucking up their
lives, even if that means letting you go, too.

And you understand, only you don't. Because you'd like to be done with crazy
yourself. In fact, you hunger for it. A full night's sleep, a meal by
candlelight, a midnight drive across town that doesn't include peering out
windows, scanning the dark streets for a mammoth, curly-haired young man in
a green sweat shirt carrying a Styrofoam cup of coffee who sways back and
forth as he mutters strings of remembered conversations under his breath.

Sometimes you wish for these things so hard that you ask yourself, "How
badly do you want this to be over? And what, exactly, are you willing to do
to end it?" You hate crazy with all your heart. But the person underneath,
you love. You still remember him as a tiny, big-eyed baby who liked to be
wrapped tightly in a blanket, a cheerful toddler sitting high in the seat of
a grocery cart chanting the word "asparagus." And you'll stop at nothing to
find him and bring him back.

The thing is: You have no idea how.

- - - - - - - - - - - -

We lived like this for as long as we could, then went back to the team of
specialists with our story. Our son wasn't schizophrenic, we insisted. The
medication they'd prescribed seemed to be harming him and our son was
getting worse. But they told us we were wrong.

A second psychiatrist was called in. "Your son is definitely psychotic," she
said, using the violence as evidence that we were wrong to have stopped
giving him the drug. It was possible, however, that he needed something
stronger. So this time, she prescribed Abilify's big, hulking chemical
cousin: a pill with a no-nonsense name that makes it sound like a building
material of some kind. Geodon.

"I'm sure you thought you were doing the right thing," the psychiatrist said
in a stern voice. "But your son is very sick, he needs treatment. You
absolutely must give him this medication. It would be cruel not to." And
then she left.

That's the day I decided I was a terrible mother who deserved to be beaten.
Out of fear and shame and denial, I'd withheld a medication my child needed
as he would have needed penicillin were he suffering from an infection. "Go
ahead," I told my ex-husband, "give him the drug. Let's hope this one
works."

That's when things got really bad.

Our son went from unpredictable to entirely random. He would arise to brew
and drink an entire pot of coffee at 3 a.m. He would call us, but be able to
say nothing for 15 minutes except, "Uh, please..." He began stalking the
girl from the dance, going to her workplace, standing in one place for
hours, and staring at her. Ultimately, every officer in our town's small
police department learned his name.

After two weeks, psychiatrist be damned, we discontinued the Geodon, too.
Things couldn't get worse, we told ourselves. But we were wrong.

Our son, the former chess champion and 1980s music buff, stopped responding
to language altogether. He could not follow directions such as: "Put on some
pants" or "Get in the car." And he began walking away from everywhere. From
home, from work. Often in the middle of the night.

My ex-husband -- newly married to a very understanding woman and blissful
for all of about seven minutes -- never slept because he was working day and
night to keep track of our son. I didn't sleep out of solidarity. Also due
to worry and grief.

This turned out to be a good thing, however, because I was up all night, for
many nights in a row, with nothing better to do than search online.

The first thing I found was a list of "infrequent" side effects of the very
first drug, the antidepressant he'd been given nearly two years before.
Among these: auditory hallucinations, narcolepsy and obesity.

The second was an obscure article about a boy who sounded exactly like my
son: a high-functioning young man with Asperger's syndrome who'd suddenly
become nonfunctional at the age of 17 and was diagnosed with something
called autistic catatonia.

It was 3 a.m. and I was on the couch under a blanket with my dying laptop,
alone in the silence of a sleeping house. That's when I Googled "autistic
catatonia" and hit the mother lode. There were dozens of stories, coming
from countries all over the world, and each one described in wretched detail
the previous year of my son's life: the slowing, the disintegration, the
delusions and insomnia and explosive anger.

In addition, they all warned -- each and every journal article, white paper
and scientific treatise -- that the one thing practitioners should never do
is prescribe antipsychotic medications, such as Abilify and Geodon, because
they will make the symptoms of autistic catatonia much worse. And it might
cause permanent damage.

The third thing I found was a Web site that described neuroleptic malignant
syndrome, a slow poisoning by prescription that lasts (and this is the part
that caught my attention) even after the drug is stopped.

Finally, believe it or not, we've reached the hopeful, lucky part. Only I
didn't know that yet.

I was crazed. Throughout the early morning hours, I e-mailed people. The
retired doctor from Stony Brook, N.Y., who had authored original work on
autistic catatonia; a therapist from the Netherlands who claimed to have a
new method for treating it; researchers at our local university. Then I went
to bed and slept fitfully for exactly one hour and 40 minutes.

When I awoke, at 7:30, my e-mail box was full. The most helpful response
came from the gentleman once of Stony Brook, now professor emeritus of both
psychiatry and neurology, a genuine mensch, living on Long Island with his
wife. "Dear Mrs. Bauer," he'd written at 6:48 a.m., "I know of no one in
Minneapolis who understands the connection between autism and catatonia. But
the clinicians at Mayo are very knowledgeable. Would you like me to make a
referral?" Other messages simply advised me to seek medical attention for my
son immediately, to flush the medications from his system. "It sounds as if
your son is, indeed, suffering from autistic catatonia," one doctor wrote.
"But I believe most of the symptoms you describe are related to the
inappropriate use of neuroleptics."

How lucky can you get? Not only did the world's top expert reach across
electronic airspace to help diagnose and refer a stranger, but we happen to
live just one hour and 15 minutes from Mayo Clinic, one of three places on
earth where autistic catatonia is truly understood. And it's that rare
healthcare organization where doctors are not allowed to take kickbacks from
the drug companies. But I'm getting ahead of myself.

On April 30, my ex-husband and his wife put our son in the back seat of
their car and drove like hell the 72 miles to Rochester, Minn. Exhausted
after the 90-minute trip, the three-hour wait to check in, the half-year of
tracking a drug-addled boy, they walked across the street to a hotel room
after checking him into the hospital and had their first uninterrupted
night's sleep in weeks.

We all did. Secure in the knowledge that the boy who'd been wandering for
nearly two years was finally locked up and safe, my husband and I, too,
slept the way starving people eat.

Then we drove to Rochester to meet with the nine practitioners who'd been
called in to assess our son. It was an interesting case, they told us -- and
instructive. Within three days, they'd performed a series of medical tests
and evaluations, determining that our son was neither schizophrenic nor
psychotic. He was autistic, exhausted, improperly medicated, borderline
diabetic, and simply stuck. It would take them perhaps a month to detox his
body of all the drugs and treat the underlying catatonia that had dogged him
for more than a year.

"This occurs in about 15 percent of all young people with autism," the team
lead told us. "We don't know yet why it happens, but we can treat it."

And then they did. Magically, it seemed. On the morning after they began
their regimen -- a combination of therapies that they orchestrated like a
carefully choreographed dance -- our son awoke and stretched, clear-eyed, to
ask us if we'd like to play a game of hearts. And after a slightly shaky
start, he shot the moon, gathering all the tricks with controlled sweeps of
his right hand, flashing us a shy but satisfied smile.

Five days later, the New York Times ran a front-page story about
psychiatrists in Minnesota who were collecting money from drug manufacturers
for prescribing atypical antipsychotics, including Abilify and Geodon.
According to the Times, "Atypicals have side effects that are not easy to
predict in any one patient. These include rapid weight gain and blood sugar
problems, both risk factors for diabetes; disfiguring tics, dystonia and in
rare cases heart attacks and sudden death in the elderly."

Side effects like our son's -- almost certainly caused by a unique
combination of the drugs and autistic catatonia -- were not explicitly
cited. These facts, however, were:

"In Minnesota, psychiatrists collected more money from drug makers from 2000
to 2005 than doctors in any other specialty," the Times reported. "Total
payments to individual psychiatrists ranged from $51 to more than $689,000,
with a median of $1,750. Since the records are incomplete, these figures
probably underestimate doctors' actual incomes."

By this time, we four parents had resumed our life in Minneapolis and were
trading visiting days.

After work on the night the Times article came out, my husband and I got on
his motorcycle, puttered through rush hour traffic, then sped down Highway
52, arriving after the dinner hour to find our son sitting at a table,
playing chess with a nurse. She was hunched over the board, muttering; he
was lounging in his chair, leaning back to watch television while he waited
for her to make her move. There was a small crowd gathered around watching.

"He's killing her!" a patient named Richard crowed. "He beat her the first
time in seven moves and the second time in four."

The nurse raised her head and grimaced.

"Did you tell her you used to be a tournament player?" I asked, bending to
kiss my son's woolly hair.

"Oh no, I guess I forgot," he said vaguely and slid his eyes at me in a way
I recognized from years ago, that quirky boy from long ago.

After the visit, riding home through rolling farmland and a scarlet sunset
that was cracked with gold, I counted the ways we were lucky. The doctors at
Mayo had assured us that our son's prognosis was very good: Even after the
treatment was done, he probably would continue to improve and regain most of
the ground he'd lost by summer's end. My son's supervisor -- a wise and
gentle woman who'd never flinched, even when he was at his craziest -- had
called to say she was holding his job for him, maintaining his health
insurance, and hoping for his swift recovery. My husband and my former
husband's new wife had parented stalwartly through the very worst of times.

And there was that one moment, as we were leaving, when my son had put his
hand on my arm and told me he missed us. He also missed going to Starbucks
and walking in the sunshine and he wanted, more than anything, to go outside
for just an hour or so. "You could just lead me out of here," he'd said, his
face sober as a Lutheran minister's. "If I walked past the desk with you,
maybe they wouldn't even see." I looked straight up at him, this bearded man
who, at 250 pounds is exactly twice my size, and started to tell him I
thought the nurses probably would notice. But he reached out and touched my
arm, gently, wrapping his fingers all the way around. "I would only go out
for a little while, you know. And later, I could come back. Don't worry,
Mom. I can find my way."


http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/