So Jim was stringing together two backbreaking, low-paying jobs and I — the 24-year-old mother of two — was trying to fill the long, icy, dark winter days. The library was my best bet. But on this particular afternoon, my nearly 4-year-old was behaving oddly. He wouldn’t sit with the other children for story time. He kept flapping his hand in front of his eyes. Twice, he jumped up and went to the wall, where he flipped the light switches madly back and forth.

I was in the stacks looking for books and swaying my baby in his homemade sling when the story lady marched up, pulling Andrew by one hand. “This child is no longer welcome at story hour,” she said, pushing my son toward me as if he were a distasteful meal. Then she headed back to the waiting group of normal kids, but turned and said over her shoulder. “You better get him checked out. I think he might be autistic.”

In that moment, the sinister, sub-zero wind from outside entered my bones. The word “autistic” was monstrous. I wasn’t quite sure what it meant but it evoked for me something haplessly and forever broken. Part crazy, part retarded. Entirely lost and never to be found.

I had seen the Dustin Hoffman movie “Rain Man” — while I was pregnant with Andrew, in fact. Thank God, it came out the year he was born. But this was everything I knew about autism. Not a soul among my family or friends back home had ever met an autistic person. When I used the term they flinched, as if I’d said something sacrilegious.

Eventually we moved to Minneapolis, where a few people did know autism. Still, I watched as Andrew went through kindergarten, the only child in his class who could recite the letters of the alphabet both forward and backward. Also the only one who needed a rocking board to sit on during the morning meeting. At recess, he stood solitary on a knoll overlooking the other children as they played, like some scientist come to study a completely alien kind.

Through grade school and junior high, he was the only one. Because it turned out he wasn’t retarded; he was perfectly capable of learning math and science. The things he couldn’t do were random yet essential: hold a conversation, choose something to eat from a menu, focus on a teacher’s voice among the maze of classroom noise.

For years, I rejected the label. Yes, he stimmed and rocked and flapped. He had an absent sort of presence; you never knew when he was actually attending. But Andrew was verbal and he made connections to people. He played a mean game of chess. How was he different from Hasidic Jews who rock and mutter, or professors who get lost on the way back to their offices after lunch?

Finally, when Andrew was a teenager and things got awful, I capitulated. The label opened doors — maybe too many. My son got services he needed, as well as treatment that I believed then (and believe still) was unnecessary. Yet he still moved alone through the world, the only one of his high school class to wig out before graduation and spend three months paralyzed and mute. The only one to move from his parents’ home into a group home.

He was — and this part still gives me hope — generally liked by his classmates, but had no clue how to relate to them. Andrew had only one carefully arranged date. Facebook struck him as useless. He was left with shards of clear memories but no sense of community. Because he stood, as on that knoll in kindergarten, utterly alone.

- – - – - -

Andrew is 24 now. He’s an extraordinary painter, working at a gallery full of artists who are like him … and artists who are not. He lives in a home with three other young men, one of whom shares his talents and eccentricities. They play basketball on the weekends. Andrew is a fierce and highly rated player on the circuit for tournament chess.

I can finally use the term “autistic” without feeling that sweep of chill from the Duluth Library. But I do it only out of laziness and expediency. He’s really just Andrew. This is his life.

When I read stories about autism (and there have been plenty this week) it’s like reading about a city where I once lived. Providence, R.I., for instance. Their headlines catch my attention and I feel a tiny pull: Those are my people, too. But they really aren’t, of course — haven’t been for years. So I move on.

Nearly all the news and research about autism is, frankly, beside the point for my son and for me. It’s lasered in on babies, on “early detection,” on causes, rates, costs and sweeping societal changes. But if one thing is clear, it’s this: These kids and their families, no matter where they fall on the spectrum, are no longer alone. Chances are, mothers know other mothers in their very own neighborhoods who are implementing identical gluten-free diets and cutting the tags out of their kids’ clothes. The library story hours are prepared for these children; they welcome them and provide special rocking boards.

When the CDC announced recently that one in every 88 children has autism, some parent groups remonstrated. They’re worried that the continually broadening criteria will dilute services for people who are really in need. Or (and I’m speculating here), they’re resentful that the specific burden they’re carrying is being minimized by those whose situation is not nearly so dire. Parents raising mute teenagers who can never be toilet trained may not want to share a diagnosis — and social service dollars — with those whose computer wizard boys seem a little “Asperger-ish.” Which I can understand. And I feel for their frustration.

But my response to the news is a little more hopeful. If one in 88 among us is this way, it makes autism seem a little less terrifying and abyss-like and a little more like something that just happens in life.

Today, when people ask about my children, I tell them my oldest has autism and the vast majority nod without horror. They act like I said he has Crohn’s disease or some other lifelong but manageable condition. They ask if he’s going to college, if he’s married, what he does for a living. With the “creep” of this diagnosis has come a welcome acceptance. My son, like a lot of people, is struggling with something difficult. But he’s doing so valiantly, and it doesn’t define him.

It certainly doesn’t define me.

I must admit that the other big autism news from this past week — an article in the journal Pediatrics that said mothers of children with autism earn 56 percent less than mothers of “typical” children and 35% less than mothers of children with other disabilities — really, well, pissed me off.

My first novel featured a character with autism (or something like it), so I’ve met plenty of mothers. They come to my readings; they write me letters late at night. All in all, they’re an interesting lot.

I particularly like the older moms, the ones who were raising kids with autism back when I  was still a kid. In the ’60s and ’70s, practically no one knew the meaning of the word. And those who did likely as not adhered to the Bettelheim theory that the mother was to blame. Yet these ladies — the ones I’ve talked to, at least — forged on and lived heartily. Many of them have adult sons still living with them. (The rate remains four to five boys for every girl.) They are retired schoolteachers or secretaries. And autism was a burden, yes, but it did not completely dictate their lives.

I was divorced when Andrew was 12; my younger children were 9 and 5. My ex-husband did not pay child support — not out of any character defect on his part, but because his income wasn’t sufficient. So I made my way — working like crazy, screwing things up, moving too many times, not paying enough attention. I was far, far from the perfect mother and there are so many things I ache to go back and change. But I lay none of that at the feet of my son.

Nor do I ascribe my income, or lack thereof, to my kid.

I can attest from experience that divorce is rampant among moms of children with autism. And that’s a huge factor in women’s income. At the same time, one of the coolest women I know is the single mother of a teenager with cerebral palsy, autism and bipolar. She attends to her son solo more than half-time. She’s also one of the most successful securities brokers in town. Her clients start investing at a million and a half.

Granted, we’re only two women. Hardly a representative sample. But as I said, I’ve met literally hundreds of mothers in my travels. And here’s what I’ve observed.

There is a large group of women with kids on the spectrum so riveted and driven by the condition that it consumes their lives. They identify themselves as “autism advocates” on their Facebook pages. They attend government panels and testify. They refer to their children’s caregivers as their “staff.”

And they befuddle me.

Because my impulse is — has always been — to insist that my son exhibits just one of the myriad ways to be human. I don’t want the government categorizing him; nor do I want the bureaucracy deeply involved in his day to day. His teachers, caregivers, resources and therapists are not mine. They’re his. He’s leading his life bravely and with an amusing tilt that adds oodles to this world. It’s up to me to live mine.

Worried that I was being narrow in my thinking, I spoke to my friend Kate Barrett, a cultural anthropologist who taught at Stanford. She had a slightly different, but enlightening, take on the stats.

“I think this has less to do with autism than it does with a greater shift in how we parent,” Kate said. “Parenting today has become an acceptable out, what we call a ‘master identity.’ It’s become a way we don’t do other things in our lives: whether it’s fashion, whether it’s work, whether it’s romance, whether it’s fitness. Being a parent — especially being a mother — becomes an acceptable excuse for not doing other things.”

Put the two things together: the wind tunnel of autism, its skyrocketing rates and all its special treatments, diets and educational plans, plus the tendency to locate the role of “mother” at the center of everything. It is, as they say, the perfect storm.

- – - – - -

Perhaps it’s just me, being contrary. But when I put together the swirl of talk and data about autism, it feels as if we’re getting closer to a fundamental truth. People are odd and imperfect and random — particularly the interesting ones — and there is an urgent need for us to make room. Expand our definitions. Soften our lenses a little. Love unstintingly without becoming obsessed.

It’s taken me 20 years to learn these lessons and I have to learn them over and over again. My best teacher is my son, Andrew, who said to me when he was quite young, “I need to get you off from hanging on my back.”

He is stoic these days, telling me little. Which is appropriate for a young man his age. What he does in his spare time and with whom — it’s not really my business. I’m grateful that he still wants to meet me for coffee at least once a week.

In a wonderful bit of kismet, my office is about four blocks from his studio. And though I try not to abuse the privilege, I will sometimes walk over to see his new work. On Monday, he showed me the self-portrait he had painted, which not only looks like him — but somehow conjures up his spirit. He is serious but not unhappy. Magnetic, however silent. And yet alone. Himself.

So this man offered to show me the city, grab a cup of coffee and talk for a while. He listened and gave me good advice. Then as dusk overtook the storm, he told me his tale.

At 30, he’d been a promising history scholar, on faculty at a major university and traveling the world. But after five years, he was denied tenure. And suddenly, everything in his life — teaching, research, sabbaticals — simply disappeared.

He fell apart briefly, then rallied and decided to write a book. It would be successful and he’d reclaim his rightful place. A few years into the project, he won a prestigious grant. And with that, he became obsessed. His marriage fell apart; he lived on next to nothing. When he finished the novel and his agent couldn’t sell it, the man hired a series of editors to help him revise.

One day, he woke up and realized that two decades had passed. His credentials were out-of-date, his novel a 10-pound weight on the shelf. He started a small business, writing corporate copy and people’s histories, and it took off. He was fine now, but sad.

By the time he finished, our cups were long empty. I touched his hand but hardly knew what to say.

A year later, my husband and I moved back to Minneapolis and I took a job in advertising. Was it simple cause and effect? Probably not. But I still credit that man with the smartest career decision I ever made.

- – - – - -

I was nearly 43 when I started in advertising, which is roughly equivalent to being drafted into the NFL at age 39.

For years, I’d supplemented teaching and fiction and freelance journalism — my real work — with small, lucrative commercial jobs. Over time, I put together a decent portfolio of posters, ads and annual reports. But this wasn’t something I talked about.

Advertising was, after all, a frat boy’s business ruled by wanton consumerism and outright lies. I didn’t belong. I’d earned an MFA at Iowa and established a credible byline. Copywriting was, for me, like the hooking that some women do to pay their way through law school. A necessary evil, but definitely not something you put on your CV.

Which is how I ended up on contract with a hot Twin Cities agency to do some medical writing in early 2010. It was like high school … and by that I mean my kids’ high school. I attended meetings with children who looked too young to drink (though two of them held beers) and we brainstormed strategy. Despite their Justin Bieber haircuts, these kids were smart. The ideas flew. People laughed. No one asked why someone’s mom was at the table. I was relieved.

One day I ducked into a conference room and overheard two women talking; one of them had recently turned 32 and she was panicked. She figured she had three years left in advertising, eight years max. I silently agreed.

So I was stunned when the agency offered me a job. The salary they threw out was double the last teaching job I’d applied for. The benefits were excellent. My hiring manager was a gentle hipster, a few years younger than I, who ran his neighborhood farmers’ market. A talented guy who’d come to Minnesota from a major television studio in New York so his kids could attend better schools.

Still, I accepted reluctantly, thinking of this as a year-long experiment. I was a novelist. To take this job long-term would be selling out.

In my world, advertising was something a serious writer did before doing something important. Augusten Burroughs. Don DeLillo. Salman Rushdie, for God’s sake. These guys didn’t keep up their copywriting after they got famous. If anything, they lampooned it. It was like the laughably bad marriage they’d had when they were young.

And yet, my conversation with that man in Seattle echoed through my head. What if you never become Burroughs or DeLillo or Rushdie? What if — horrifying as this was to contemplate — being Ann Bauer of 2005 was the peak? I shivered and vowed to treat this job as if it were real. I’d play the part. Act as if.

A lot of people asked me, once I enlisted, if modern advertising really was like “Mad Men.” Were there fevered all-night creative sessions? Client meetings where we hid our work behind curtains and dramatically revealed it? Wild, drunken parties where we dressed up and danced and people had sex under desks?

Yes, yes, and, uh, yes. (Except for the sex part. I’ve heard rumors, but I can’t say for sure.)

The truth is that advertising — at least in the agency where I practice — is just as fun as it looks on TV. But here’s the part I wasn’t prepared for: I also found it very good-natured. Stimulating. Strangely sweet.

I came to this field jaded, not only by nature but due to the experiences I’d had in the previous couple of years. My older son, who has autism, had gone through a hellish psychosis at age 20. My younger son was struggling to cope and floundering. Our year in Seattle had been mostly dark and grim.

But after six months I realized that despite my angsty temperament, I felt lighter. Who could stay melancholy when surrounded by interesting, funny kids who make paper hats out of their creative briefs, then spend 10 serious hours designing a bank logo that’s a perfect work of art?

If a baby was sick or a parent had a milestone birthday, people didn’t say, “What about your work?” they said, “Go home. Be with your family. Don’t worry. It’ll all get done.”

And slowly, I saw that some of my assumptions were wrong. Yes, most of the directors were male — and young. But a lot of this was circumstance. There were more men taking the training and applying for the jobs. The young, single ones were free to work nights and evenings. They had the voice and aesthetic for advertising’s bulwarks: national sports accounts, casual dining, retail, spirits and beer.

But when our agency acquired financial and medical clients, they tapped me. A middle-aged woman, but the best person for the job. No one was filling out those minority/ethnicity forms that universities make you sign. But taking age out of the equation, I walked into a pretty diverse work environment: Jews, Arabs, blacks and Hispanics. People with disabilities. The foreign-born, Republican, communist, Catholic and gay.

I watched as our agency hired a young Web developer who was in the middle of gender-reassignment surgery. She transitioned from male to female among computer nerds and tough, biker-y looking IT guys. They often go out for drinks as a group. She ran for, and won, the title of “queen” at our annual holiday party. Everyone cheered.

There were even a few more hires like me: women past the Peggy Olson ingénue phase. People who never went to ad school. Former lawyers and clerics who came in with wonderfully weird new slants.

Just as my experiment was due to end, management said it wanted to promote me. I was given the title associate creative director and put in charge of some of the brightest writers in the place.

And oddly, I was happy. My anniversary date came and went and I felt something unexpected: a reluctance to leave.

- – - – - -

I’ll admit, I waver sometimes.

I struggle with some of the messages we send out and I’ve drawn a few personal lines: I won’t work on pharma ads or have anything to do with gambling. I won’t market alcohol to young people. Twice, I’ve stood up in a meeting and said, “No, we will not say that. It would be wrong.”

I like to think it’s one of the reasons they keep me: I’ll speak up divisively when groupthink takes hold. And so far I’ve won every battle, pulling our copy to what I see as the ethical side.

But I also struggled with the ethics of teaching, my other career. It’s forbidden to say this in the ivory tower, but students pay tens of thousands of dollars for creative writing degrees then graduate into a world where there are no jobs. The only thing they can do is teach, breeding more creative writing majors. It’s an endless, self-serving cycle.

Most days, I take pride in being part of a company that stimulates the economy and employs more than 400 souls.
Even so, when every academic and writer I know converged at a conference in Chicago, while I was back home writing ad copy, I had another crisis of faith. For days, my Facebook was full of photos of people with their arms around each other’s shoulders. Posts like: “Met Pam Houston at AWP and she was really nice!” I felt, irrationally, left out.

Then I remembered: I hate conferences. Crowds, bad food, high entrance fees. People constantly whispering things like, “Did you hear about that fiction opening in South Bend? Some guy with like nine books and a screenplay in production got that job. Asshole.”

I avoided conferences even when I was in the academic world — one reason I wasn’t terribly successful. But teaching … that’s another story. Teaching, I miss.

In a way, I get to do this at the agency, too. I give random lectures on grammar and lead rhetoric seminars (we call them “presentation training”). Kids — sorry, junior designers — come to me with any number of issues: pregnant girlfriends, divorcing parents, money problems. On good days, it feels a little like office hours to me.

One winter afternoon while I was at work, my agent called to tell me he had an offer for my novel from a small but very well-respected press. He quoted the advance amount, then said cheerfully, “I’d tell you to buy champagne and celebrate, but you’d blow the whole thing.”

For the first time in my career, I didn’t have to care about the money. And make no mistake, it is about the money. All my conference-going friends were busily filling out 50-page grant applications, spending days on personal statements, making multiple copies, saving their receipts from FedEx. They support fiction in their way; I support it in mine.

Yet I knew, eventually, my way must end. Even a mid-list book requires attention: readings, bookstore signings, interviews and radio shows. When I received a letter asking me to teach a summer workshop at Iowa, I sent my acceptance but chose the last possible dates. I wanted to put off quitting as long as I could.

But eventually, I prepared a formal resignation letter requesting that the agency convert me back to contract so I could continue working with them when I come back from my tiny summer tour.

I took it to the chief creative officer (our Don Draper). He said no.

He said don’t be silly, we’ll work it out, take the time you need, we want your book to do well, we think it would be great if you teach at Iowa. Keep your job. Other writers stepped in without my asking to cover the time I’m gone. It felt kind of like a barn raising: Someone rang a bell and the forces converged.

Are there still things I don’t like about advertising? Sure.

The Nerf gun wars get to me. When the song about “itty-bitty titties,” played at ear-splitting volume for the fifth time, I leaned over and said, “Some women may not appreciate that, you know,” and got exactly the same eye roll my 17-year-old gives me. Occasionally, there’s an all-day client meeting in a hermetically sealed room that makes me feel like time has actually stopped.

But even then, I’m glad to be out of the frantic, impoverished, pure academic writer’s life.

I stay in touch with the man from Seattle. I’m happy to say his business is soaring, and he’s working on his novel again. Not for a job. Not because he has to “publish or perish.” But because he likes his book — a Gothic story about music and driving ambition and real human tragedy. Exactly the sort of novel I would love to read in a firelit coffee shop, safe from the falling rain.

“What about a coffee shop?” I ask. “If we find a place that opens early, we could sit there until it gets light.”

He glances at my laptop, which is sitting — in clear violation of the rules — on the desk. “Go ahead and try,” John says.

I stand unsteadily, my head pounding from two hours of questioning under fluorescent lights. I plug in the hotel’s Ethernet cord and am irrationally comforted when Google appears.

After a few searches and one furtive cellphone call to a number that only rings, I turn back to John. He’s sitting on the mammoth bed staring out the window, his eyes wide and glassy. “There’s no answer,” I say. “I don’t know if they’ll be open at 6. And I don’t dare call the front desk to ask.”

“No.” He moves slowly, as if drugged. “You get ready for bed. I’m going to pack everything and …” He glances at the clock radio next to the bed. It’s midnight. “Set the alarm for five.”

After we’ve brushed our teeth and checked the room for stray items, we get under the covers and huddle in about a fifth of the mattress’ breadth. He sleeps fitfully. I sleep not at all but for a short stretch in which I dream there is a tall man standing in the corner, watching us.

Then there is a piercing sound and we bolt out of bed. I shower in three minutes and dry my hair. John puts on yesterday’s clothes, unlocks the door, and peers into the hall.

“C’mon,” he hisses. “I don’t see anyone.”

So I grab my backpack and umbrella, pulling my suitcase behind me, and follow him down the hall. We wait 30 tense seconds for the elevator. We’re nearly through the lobby when a hotel clerk calls to us to stop.

“Which room are you leaving?” she asks, picking up her phone.

Neither of us even thinks to lie. We blurt out our room number and dash through the automatic doors into a dim and dreary storm.

—-

I’ll admit, we should have known better. But it seemed like such a reasonable idea when it first came up.

Several months before, I’d asked my husband, John, what he wanted for his birthday. “A trip alone with you,” he said. “Something just for us. Maybe a marriage retreat.”

Now that may sound like an unusual request from a middle-aged agnostic from the deep South, but John is an unusual guy. Not only is he incredibly sweet, he’s also an engineer who relies on statistics. Math is his religion. And our odds — they’re not good.

John was divorced twice before marrying me. His father, a hard-drinking used car salesman, was married to so many different women I need an org chart to keep track of John’s various siblings, whole, half and step. I have long-married parents but divorced my own first husband after 13 years, then remarried him after his first stint in rehab, six months later, and divorced him again. Historically, neither of us is good at this marriage thing.

Add to that the various stresses: My three children — a brilliant but unpredictable young man with autism; a college student with a flair for throwing blow-out parties; and a stunningly sardonic teenage girl — and John’s now-pregnant adopted daughter. Also the two houses we’re supporting, a recent cross-country move from Minnesota to Washington, and our very different ways of dealing with the outside world.

Just 18 months into marriage we’d nearly come undone when our condo association exploded into a particularly ugly feud. At issue was a $9,000 plumbing bill. I wanted to negotiate with our neighbors; John wanted to hire a lawyer. A couple of the wilier residents quickly figured out we were at odds and further divided us. In the end, John and I were barely speaking and we wound up covering a far greater share of the cost than we would have if we’d pursued either tack jointly. It was a bitter lesson. But when you’re two strong-willed people who came together at 40, acting as one can be hard.

The marriage encounter John had found in Tukwila, Wash., claimed to address this and more. It focused on enhancing communication and making couples stronger. Divorce-proof, even. It was nearby, relatively inexpensive, and, yes, it was sponsored by Lutherans, he said, but the literature clearly stated it was “ecumenical” and that people of “all religious faiths” were encouraged to attend.

This is the religion that runs one of the best and most effective social service organizations in the world, I reasoned. The sect so progressive it ordains gay clergy. I tend to feel warmly toward Lutherans and they seemed to be welcoming me — a Jewish woman –to renew my marriage with them. Plus it was a weekend with a king-size bed and towel service. I immediately said yes.

But as months passed and the retreat drew near, I had misgivings. First, there was the e-mail we received from one of the organizers, outlining everything from precisely what time we should arrive to the exact type of clothing we should bring.

The 26K message contained the lines, “We would like to stress that this is a structured, work Weekend. There is no time for TV, books, work, etc. There are also no distractions.” Weekend was capitalized throughout the text, including in this personal testimonial from past participants: “By Sunday afternoon of our Weekend, we had a whole new appreciation of our relationship and didn’t want the Weekend to end.”

“This is feeling a little, um, cultish to me,” I said to John.

“I agree,” he said. “Let’s check it out.”

So we both, independently, ran our own computer background searches but came up with nothing. There were 20 or so Marriage Encounter pages and a single endorsement — for an “expert” called Dr. Michael Peters (not his real name, but that’s what I’ll call him due to the team of lawyers his empire no doubt employs) — but no stories, schedules or descriptions to be found.

A few nights later, John received a phone call from two of the presenters. Both husband and wife were on the phone and they were so enthusiastic I could hear their bright shouted welcomes from across the room.

“That was really weird.” He’d hung up but stood, still staring at his phone. “What do you think? Should we cancel?”

I was tempted. But the trip was only three days away. I’d already cleared the time and arranged supervision for our teenage daughter. “Let’s try it,” I said.

—-

We relaxed when we arrived at the resort. We had an hour to kill before the introductory session and I’d come prepared: I pulled a bottle of wine, some cheese and crackers, and blood oranges from my suitcase. We ate dinner on the love seat, my feet in John’s lap.

But at 7:40, the phone rang. “They want us downstairs for a photograph,” John said, covering the receiver. Ten minutes, I signaled with my fingers then got up to cork the bottle and put away the food. “He said no.” John’s voice came from behind my bent back. “Now.” And everything in me went stiff.

It took us perhaps five minutes to get down to the lobby, where we were posed in front of a potted plant and our photo was shot. Then we were led into a small room lined with tables and felt banners: God Loves Your Marriage, they proclaimed. In front of each seat was a red three-ring binder with a blank white sticker in the top right corner. “Sit,” we were told by the older man. “Write your name and room number on your folder. We –” he gestured at the white-haired woman and two middle-aged couples who had gathered around him, “must leave for a few moments to pray.”

I looked around the room. There were a dozen other couples that looked to range from mid-20s to late 50s. One was biracial; two were overdressed. Most of us hovered around 40 and wore sweat shirts and jeans.

John put his arm around me. And that’s when I noticed there was one thing nearly all the other couples in the room shared. With one exception — a pair that was at least inclined toward each other — the husbands and wives sat looking forward, keeping a space between them that practically glimmered with hate.

The first presenters were a prim woman and a slicked-back Jimmy Swaggart-looking man. He smiled his toothy grin and told us how the Weekend would proceed.

There would be many presentations and we might feel resistant, he told us. But we needed to trust in order to let the Weekend do its work. It was important to do everything we were told and stay until the very end of the Weekend. They themselves had been saved by the Weekend. And it was their privilege to be along on our Weekend, because magical things were about to happen to us.

Then the man stepped down from the little podium where they sat — the four presenters — and told us there was one more person who wanted to welcome us. He pulled a TV out of the profusion of banners and hit a button. Presto! Dr. Michael Peters appeared. He reiterated that our marriage was about to be saved by the Weekend. And he told us that even more wonderful work could occur in the privacy of our own home, even after the Weekend was over, thanks to his several, life-changing books. One by one, the titles scrolled across the screen: “The Five Love Languages,” “Love Talks for Couples,” “The Marriage You’ve Always Wanted.” And so on.

Then the elderly couple spoke. He was a pastor, but his wife was the real force — you could tell. She talked about how their marriage had grown lackluster after 20-plus years. But on their Weekend, Marriage Encounter “relit the spark in their relationship through Jesus Christ.”

He stroked her back suggestively, and I tried not to squirm. But this was like watching my grandparents at foreplay. I was relieved when the third couple took the stage. The wife was cheerful and childlike; she described their renewed marriage using kindergarten phrases. Every day was like her birthday, she said; she felt so happy with her spouse, it was like being wrapped in a bright pink blanket all the time. Her husband — a squat, bearded man — beamed and wept, telling the assembled men he had learned on his Weekend that it was OK to cry.

Then the pastor told us to open our folders and turn to Page 3 where we would find a list of questions to answer and discuss. What do you love most about your spouse? Describe a time when you felt a strong emotion. A few moments passed during which John wrote diligently, as did I. Behind us, there was a scuffle.

“Write something,” hissed a woman’s voice.

The answer — coming from her husband, I assume — was something between an obscenity and a groan. We heard her slam her folder closed and throw it at him. “Well, if you won’t, I won’t either,” she said.

We engaged in a couple more exercises like this; during the final one, all the men were sent back to the hotel rooms to write in private and we women were kept to do our work under the buzzing lights.

Finally, around 10:30, the presenters began to wrap things up. This was only a taste of the Weekend ahead, the pastor said. Then, suddenly, his wife stepped back and he stood to give us a steely look. There was to be no TV, no computers, no cellphones or pagers, he said. If we were found using any of these devices — he grinned, but in a serious way — we risked having them disconnected or removed.

In the morning, we would get a wake-up call. We would then have exactly 45 minutes to shower and dress. A second call would come in. “Do not,” he said, wagging one finger, “leave your room until that second call. Under any circumstances.”

We would gather for a devotional prayer before breakfast. Then the day’s work would begin: about 15 hours of it. Meals would be taken together, in a designated area of the hotel dining room. Sunday, at the end of the Weekend, there would be a sacred Communion ceremony and he encouraged all who had been “baptized in the name of Jesus Christ” to partake. The rest of us were required to attend, even if we could not accept the Host.

The wives were dismissed first to wait for our men in the rooms; it was, I think, meant to be like a wedding night. We women moved in one solemn herd toward the elevator and boarded, exceeding the weight limit by about 200 pounds and setting off an alarm. Nevertheless, the door closed.

Once inside our room, I paced. After several minutes John arrived, his face ashen, and closed the door behind him. “What do you want to do?” he asked.

Which is how we end up running down a frontage road at dawn, our rolling suitcases bumping along behind. We cross over the highway and slow a little. My forehead and eyelids are wet and itching. I need caffeine.

Hallelujah for Starbucks, open at 6:20. We sit by the faux fireplace and dry out as we sip from enormous cups. Reading the New York Times by Wi-Fi feels like a luxury; we trade news items and move closer together, cuddling openly in the Southgate Mall Starbucks while we discuss the Dow Jones and healthcare reform. The rain lets up and light floods Tukwila.

“Do you think we should call someone and tell them why we left?” I ask.

John considers for a moment before shaking his head. “My father always told me there was no use chasing a mark once he was out the door,” he says. “I don’t know what they were selling us back there, books or religion or both, but I think once we’re gone they don’t care anymore. They lost the deal.”

I start to object but stop myself. “All right,” I say, snuggling further in.

We miss the first bus, happily, but run through the sunny, yellow morning to catch the next.

An hour later, we’re nearing Seattle. It’s 9 a.m. and we’ve already been awake for half the day. But I realize, suddenly, that I feel strangely good. “Hey,” I breathe into his neck. “Are you hungry? Do you want to go to Mae’s and get something to eat?”

“Yes,” he says, in that I’m-always-hungry tone he has. So we get off in the tunnel, walk up to Third Avenue, and transfer to a No. 5. It’s another 30 minutes to Mae’s Diner but the bus is warm and growly and we’re jostled together between our piles of suitcases, coats and bags.

Finally, around 10 o’clock, we’re in a booth drinking hot tea and eating from mounded plates of food. It feels like we did something momentous together and I realize there was not a moment when one of us questioned the other. Not even Dr. Michael Peters and the scary pastor could sway us. We made our decisions in partnership.

Just then, John reaches across the table and grabs both my hands. “This may be the best morning I’ve ever had,” he says.

“Me, too,” I say, and mean it. What do you know? Dr. Michael Peters may be on to something: The retreat really did work.

Ann Bauer is a novelist and frequent contributor to Salon.

Then she looked at her partner’s face and saw panic. So she put the procedure off … for a while.

Finally, though, she decided she couldn’t live with the odds any longer. She scheduled the mastectomy, along with plastic surgery to get implants. After discussing it with her doctor, Jessie opted against saving her nipples — an option some women choose even though it carries a small risk.

In a so-called nipple-sparing procedure, surgeons would have carved out the breast tissue under and around while leaving the nipple and areola of each attached. Because nerves would be cut during the surgery, there’s little chance of actual nipple sensation. And in some cases, diminished blood supply causes the nipple to shrivel and become deformed over time. Of greater concern to Jessie and her surgeon: There’s a small chance that breast cancer lurks or will grow in the nipple itself.

“My attitude was, if I’m going to do this, I’m going to do it right,” she says.

But her boyfriend disagreed. He was angry and felt she hadn’t taken his feelings into account. He grew increasingly uncomfortable and remote throughout the procedure: double mastectomy, reconstruction of the breasts using cadaver tissue, and a messy, gory aftermath involving lymphatic drains.

At the time, Jessie was entirely focused on her own body and its recovery. She didn’t want to die. And how, exactly, was she supposed to negotiate this decision with her lover when no expert she consulted ever mentioned sex?

Looking back, she says she wishes she had handled it differently. Her boyfriend really tried. He stayed. He helped her to the bathroom and brought her Vicodin at 4 a.m.

“If I could talk to women, I’d tell them do not let your man drain you,” Jessie says, referring to the process of emptying and measuring the bloody lymphatic fluid siphoned off by her surgical drains. “That whole area is just a mess. I think my partner couldn’t deal with the act of being a caregiver. And a lot is written about the women’s side of it, but I don’t think men get due credit for what it does to him.”

Jessie’s new breasts, for instance. They looked great under clothing, but artificial — smooth but for scars running like lightning along the surface of the skin — and her partner didn’t want to touch them. Or her.

The couple tried counseling, but Jessie’s boyfriend was reluctant to share his true feelings. He admitted that he felt guilty, yet he couldn’t help being totally turned off. For her part, Jessie was just as capable of orgasm and inclined to be as sexual as before. And she’d developed new hot spots to make up for the ones that were gone: Her cleavage and the region under her collarbone suddenly had become erogenous. She asked her boyfriend to kiss her there when they made love. But he couldn’t do it. There was something too disturbing about her nipple-less breasts.

“I will never forget turning around in the kitchen one night,” says Jessie. “I was doing dishes and I slammed them down and was crying and said, ‘Honey, these things may be plastic, but the rest of me is not. I need you to start touching me again.’”

A few months later, they broke up.

———

The chance that a man will be diagnosed with prostate cancer in his lifetime is 17 percent — roughly 4.5 percent greater than a woman’s risk of getting breast cancer. One could argue that there is inequality in the way society treats the sexes when it comes to cancer: Do we celebrate prostate cancer awareness month? Stage walks for prostate cancer research? Wear purple ribbons?

No, although that may have much to do with other statistics as well: The survival rate with early detection and good quality treatment is nearly 100 percent for prostate cancer, while the cumulative rate for breast cancer is about 90 percent. According to the National Cancer Institute, the average death from breast cancer occurs at 68, while the median age for death from prostate cancer is 80. All of which means that an increasing number of young women, even famous ones, are opting for genetic testing and preventive mastectomies. (Anyone wanting to learn more about preventive surgeries should go to the Bright Pink website.)

And in terms of medical strategies to cope with the sexual aftereffects of cancer treatment, men are literally decades ahead of women. Surgeons long ago developed nerve-sparing procedures and radioactive seed therapies to reduce the risk of impotence. For men who do have difficulty getting erect after undergoing prostatectomies, doctors respond with therapies, drugs, mechanical devices and support groups.

For women, virtually none of this exists.

“It’s sexism, ageism, paternalism,” says Dr. Michael Krychman, medical director of the Southern California Center for Sexual Health and Survivorship. “Sexual health is the No. 1 quality-of-health complaint women have after breast cancer treatment. Men are studs — we’ll talk to them about sex. But we still have the attitude that a woman who survives should forget about all that and be grateful she’s still alive.”

I’ve seen this imbalance play out among people I know.

About a year ago, I had lunch with a much older male colleague whom I’d always thought to be genteel and discreet. After we ordered, he confided that he’d recently been treated for prostate cancer. I said I was sorry. Our salads arrived. And he began to talk.

For the next hour, I heard about penis pumps and Viagra. He told me his urologist had given him orders to masturbate at least once a day — twice, if possible. Then he described how odd it was to have an orgasm without ejaculation. Excising the prostate eliminated semen, he explained. But he was learning that even without the thick spray he was used to, coming could still feel good.

Later, the man phoned me to apologize. He’d been terribly inappropriate, he said. But I had to understand: From the moment his cancer was diagnosed, healthcare professionals had been talking to him nonstop about sex.

A few weeks later my friend Becky was diagnosed with a hormone-receptive breast tumor. She was in her late 40s — an outspoken woman working in a male-dominated field. The oncologist told Becky she’d need a sizable lumpectomy, chemotherapy, radiation and treatment with Tamoxifen, a combination that often triggers immediate menopause in women over 40.

“Could any of this affect you sexually?” I asked, flashing back to the conversation with my 70-year-old colleague. “Will you lose sensation? Will your libido drop as a result of the drugs?”

Becky had no idea. No one had talked to her about any of this. The one time she’d asked a sexual question of her surgeon — about whether she could leave intact the nerve endings leading to her nipple — the woman shrugged, telling Becky she would do what was necessary to eliminate the cancer. Period.

“We find there is a real difference in the way physicians treat the genders,” confirms Dr. Dixie Mills, medical director for the Dr. Susan Love Research Foundation, one of the nation’s leading nonprofit organizations devoted to the study of breast cancer and women’s health. “Maybe it goes back to unconscious, ingrained stereotypes. A lot of male doctors won’t talk to their mothers about sexuality, but they’ll talk to their fathers. So they’ll talk to their male patients but not their female patients. Yet we’ve found even some women doctors aren’t comfortable talking to their female patients about sex.” 

This is particularly true, it seems, when the topic is nipples. Virtually none of the literature or education around the topic of breast cancer covers the sudden disappearance of erotic sensation in the breast. There is no attempt, as there is in a prostatectomy, to preserve the nerves. Modern mastectomy simply hacks off the offending tissue and creates a blank area where there once was tingling current.

“It’s a really huge loss sexually, and also in ways you don’t anticipate,” says Meg, a 35-year-old Ohio woman who, like Jessie, underwent a preventive double mastectomy. “For instance, I have no warning when I’m going to get my period. I used to know exactly because my breasts would get sore. For the first couple months after the surgery, I’d be just floored every month.”

Even less-invasive lumpectomies often damage the nerves so nipple stimulation is no longer helpful in achieving orgasm. My friend Becky, who had her surgery in early January, now reports her left breast and armpit are entirely “dead.”

“This happens mostly when the incision is near the nipple,” Mills says. “But rather than talking about this with their patients or cutting into a different area, surgeons just go ahead and consider it necessary. Everyone is so focused on getting the cancer out that sexual issues fall to the bottom.”

One organization is trying to correct that. The Young Survival Coalition, a New York-based nonprofit that supports women under 40 who have been diagnosed with breast cancer, runs seminars and support groups whose focus is on relationships and sexuality. And the offerings have become so popular that older women are asking to join the organization.

”We have sex therapists and counselors who can help them deal with things like vaginal dryness — which occurs in most women after chemotherapy,” says Stacy Lewis, vice-president of programming for the Young Survival Coalition. “For a lot of women, we find it’s simply pain that’s preventing them from having sex.”

In fact, both chemotherapy and many of the drugs used to treat hormone-receptive breast tumors can cause the abrupt onset of menopausal symptoms: hot flashes, mood swings, loss of libido, and vaginal dryness, which leads to painful intercourse. But women at risk for reproductive cancers — particularly young women — cannot use many of the fixes available to the general population, such as HRT (hormone replacement therapy) or topical hormone creams.

There is a non-hormonal drug for female sexual dysfunction in Stage 3 FDA clinical trials. But it could be years before it’s brought to market; at this point, there is no effective Viagra-style therapy for women. Nor have any of the dozen or so women I interviewed been advised by their doctors to masturbate in order to increase blood flow to the area — though it makes sense it might help. Only KY seems to be sensing the growing need for solutions, with its ever-expanding line of female-targeted lubricants.

The only real medical advances for women have been made in the area of cosmetic surgery — making the areas look more normal and functional even if they’re completely numb. Still, design options are far from perfect.

The fake nipples offered to Jessie were perpetually hard and looked terrible under clothing. “I couldn’t see putting a pair of Tic-Tacs on top of these perfectly formed new breasts,” she says.

Despite a modicum of risk, Meg elected to have areola-sparing surgery — meaning the dark, round circles from around her own nipples were retained and reapplied — because her plastic surgeon said it would create a “visual cue.” Breasts without nipples or areolae are like faces without eyebrows. They disconcert, making viewers subconsciously uncomfortable.

A sexual partner — even a devoted husband — might respond negatively on a visceral level, without really understanding why.

In a voluntary study of 300 women, conducted by the Young Survival Coalition, 49 percent said their breast cancer experience reinforced or strengthened an existing romantic relationship.

Happily, this was the outcome for Meg, whose marriage thrived as she recovered from surgery. Her husband attended every one of her doctor appointments, met her as she came out of the operating room, and had dozens of flowers waiting for her upon her return home. In the year since her surgery, Meg found she prefers to wear lacy camisoles during sex, but this is because her breasts no long feel erotic to her. It is not because she feels the need to hide them from her partner.

“My husband was there for me across the board,” she says. “He was 100 percent loving and accommodating and has never indicated any dissatisfaction with my body. I am keenly aware of how fortunate I am in terms of the person I’m with. The story of having a guy who just can’t deal is not atypical. I know so many women who’ve had that experience, and my heart goes out to them.”

But of those breast cancer patients who’ve remained married or coupled, Mills says anecdotal evidence collected by the Dr. Susan Love Research Foundation indicates many of them are simply living without satisfying — or any — sex.

“We hear a lot of women say it just isn’t important to them anymore,” says Mills. “But we hear other women say their marriage is suffering, or they’re in a bad relationship but terrified of separating from their current partner because that means they’ll have to get out there and date.”

And what about those women who happen to be single already? In addition to the physical changes — the lack of nerve endings and nipples, the vaginal dryness, the low libido — there’s the sometimes crippling issue of body image. Men are notoriously visual creatures. Jessie is acutely aware of this.

“It’s really hard to seek out new partners because, to me at least, there’s a certain spontaneity lost in the heat of the moment,” she says. “I mean, you’re making out and all of the sudden you have to say, ‘Oh, by the way, don’t want to surprise you, but I don’t have any nipples.’ Talk about a mood killer! You just cross your fingers and pray you have a nice moment at dinner when the topic gets brought up so you can ‘warn him’ ahead of time.”

She pauses, then goes on. “But if you don’t, there’s this black cloud following you around while you’re talking about music, food and politics … When will I tell him? And how will he react?” 

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 became 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.