For his 17th birthday, my older son asked for a trip to Fargo, N.D.
A rigidly logical and uniquely random boy, he had first consulted the road atlas he received last Christmas and keeps by his bedside to read in comforting bits, like a book of poetry. Then he went online and brought up a colorful Yahoo map so he could chart each area within a 300-mile radius.
After considering the options for a couple days, he chose Fargo because it is exactly four hours from our home in Minneapolis, because it is to the west — in the direction of Seattle, which he very much wants to visit — and because he had never been there. I was making dinner when he shuffled into the kitchen, head averted, and presented the request to me in his typically desultory way: spiraling from his desire to leave town and practice driving on the highway to the fact that we could stay in a hotel, have pizza for dinner and shop for new jeans with a 34-inch inseam. “I’ve decided,” he spoke into his shoulder. “For my birthday, on Saturday, if you don’t have too much work to do, and you think it wouldn’t be too far, I’d like to go to Fargo.”
I took a sip of wine, half a dozen questions fighting for space in my head. We couldn’t have pizza here? Are you sure you want to go north in winter? How much homework do you have this weekend? Couldn’t you find some place closer? And, Fargo? Why?
I opened my mouth to ask. But luckily, by the grace of some passing ghost or because I’d been slowed infinitesimally by the wine, I actually paused before speaking. I looked up — nearly a foot to the face of the man-size person he has become — and saw that my son’s eyes were darting, the way they do when he is nervous. He’d researched, made a decision and spoken it aloud. This had cost him.
So instead, I turned toward the stove, pushing down the impatience that rose inside me and stretched like some stubborn jungle cat whenever I thought of an entire weekend’s worth of writing, housework and spinning classes lost so that we might drive through miles of flat, ice-covered fields in order to reach … Fargo. I pictured a town as brown and inelegant as its name, squat buildings like fortresses, a constant buffeting wind. “You’re sure?” I asked. “That’s what you want?”
He nodded, timidly. I stirred the spaghetti sauce and worked to gentle my voice. “OK, that sounds good. We’ll leave early, get some breakfast on our way out of town.” I was envisioning the New York-style coffee bar in Uptown — our final glimpse of civilization, not to mention the last decent espresso I’d get all weekend. “Make sure you pack your homework. And your swimming suit. I’ll try to find a hotel with a pool.”
He drew a deep breath and coughed, the way he often does before speaking. “That sounds nice,” he said, then nodded exactly twice and tucked his head between his broad shoulders. The blond curls he’s had since he was a baby had grown thick and wild; they were creeping down his cheeks into the beginning of a beard. I made a mental note to get him a haircut and shave in Fargo. We probably would find an old-fashioned barbershop there, and if nothing else, it would kill an hour.
He shuffled toward the stairs, bound for the bedroom where an antiquated double-tape-deck stereo hangs, speakers spread like bat wings, above his desk. But at the door, he turned around and faced me, eyes raised to meet mine with something that resembled confidence. “I like Perkins,” he said. “For breakfast.”
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In an early review of my first novel, Garrison Keillor called it “a story of mother love and ferocity and doggedness.” A close friend of mine read the quote on Amazon.com and sent me the following message: “Congratulations! Great blurb. Fierce and dogged … I couldn’t have said it better. He sure nailed you!”
“No, he nailed her,” I responded. “He was referring to the mother in my book. I’ve never even met Garrison Keillor.” But, of course, we both knew that wasn’t the point.
I spent my 20s scrapping like a street fighter. First there was the matter of supporting three babies who came before my husband and I were ready, then the sudden, horrifying withdrawal of our older son when he was not quite 4 years old. I rejected the initial diagnosis of autism, certain there was a way to restore the bright, beautiful child who had suddenly become vacant and mute, chewing on his clothes and gazing at a palm that he flapped in front of his face like a delicate bird. For years, I sought alternative treatments — biofeedback, nutritional therapy, chiropractic and kinesthesia — and charged into schools demanding, no matter how impenetrable his stony silence seemed, that my son be treated like any other child.
Outwardly, of course, he wasn’t at all like other children. While they ran and played, he curled in on himself like a possum, averting his head, chanting the same few syllables over and over under his breath. But he was in there, I was certain, locked away but reachable, and relentlessness seemed to be the key. At home, I held him and sang to him and read him poetry. When he became rigid about his routine, I purposely upset it, serving him his dinner backward with dessert at the beginning and salad at the end. Moving his toy cars into a circle each time he arranged them in a perfectly straight line. And, very slowly, the barriers his mind had established dissolved and a child unlike any I had ever met before began to emerge.
This boy was tentative and unpredictable. He spoke in fragments, struggling to make himself understood with odd clumps of words that didn’t necessarily form meaning. His eyes darted wildly, rarely meeting ours. And he seemed puzzled by everything: Shoelaces and scissors confounded him. At 8, he could not pedal a bicycle or kick a ball or follow the plot of a fairy tale. Still, I was certain if I worked fast enough, hard enough, he could be retrieved and retrained in time to catch up with his peers.
His brother and sister were brought up in this determined atmosphere. I enlisted their help, even as I watched vigilantly for signs that they, too, might suddenly vanish inside themselves. Neither did. But they learned, early on, exactly what my rabid style of mothering meant, how immovable a force I could be. Very quickly, the younger ones became my protégés: each had methods for reaching his or her older brother — reading aloud to him at night under the guise of doing their homework, taking his hand when we were out in public, prompting him to answer when a neighbor said hello. For years, they clung to him nearly as fiercely as did his father and I.
Then, one day, I realized our work was mostly done. By the age of 12, my older son was back — not “typical,” in the Diagnostic and Statistical Manual of Mental Disorders sense, but quirky and funny and quiet and odd. He could stretch his hand out and stay so still, a butterfly would land on it and quiver there for a moment before flying away. He struggled with reading and daily conversation but excelled at math, music and chess. It was time for us to let him become who he was and go back to our own lives, which the children did with great grace. But I was lost. There was fight left in me and it percolated, making me constantly uncomfortable. That store of energy I’d invested in the project of mothering seemed endless. So I upended my life — all of our lives — enrolling in graduate school, pouring all of my leftover zeal into teaching and reading and publishing, plus early mornings spent writing a book.
Odd things happen in a family when the people in it change: There are repercussions. But unlike ripples in a pond or dominoes falling in series, they occur in an unpredictable and random way, more like sudden thunderclaps than answering echoes. There was, first, the move to a new city, and the adjustment to a household in which the mother left each day rather than hovering; then the abrupt end of a marriage that had been, according to everyone who knew us, destined to last forever. No matter what happened, I plunged ahead, moving twice more with my children in tow, taking a full-time job in journalism, becoming infamous for my freakish productivity — producing four or five feature articles a month plus assorted essays and stories. Time passed and I convinced myself that doggedness was my trademark, necessary and admirable. Never mind that I was perpetually alone inside my ceaseless whirl.
The week of my son’s birthday had been particularly dispiriting. Monday, the trainer at my gym had ordered me to take a couple of days off, saying my body needed a chance to rest. Tuesday, the editor of the magazine where I work had asked me to join him for lunch and suggested that I work from home more often. “You’re just not …” He began, then drained his water glass and stared at the ceiling for a few seconds. “You’re not an office sort of person. The truth is, we all find your level of activity a little, uh, disruptive.”
I listened politely to both of them. But inside, the whole time, I was screaming, scared stiff and full of righteous pride. “I sleep five hours a night! I’m a single mom raising three kids, working full time, writing every morning before dawn! Don’t tell me to slow down.”
The morning of our Fargo trip, I slept past 7 o’clock and did not go to the gym. I felt coiled inside my clothes and was silent as we threw our overnight bags into the back of the van. We drove directly to Starbucks, and the 24-ounce cup of coffee helped; there was that sudden unknotting and clarity that always comes with the first rush of caffeine. By the time we’d been on the road for 10 minutes or so, I could speak. But there was little need.
He was driving: this boy who was born on a frigid evening in February, entering the world soundlessly, large and wide-eyed and wise. And he was playing the tapes he’d brought, filed by year of origin in the side pocket of his suitcase. His current project is cataloging the hits of the 1980s — the era in which I myself was 17 — so we listened to Chicago and the Electric Light Orchestra. Billy Ocean, John Cafferty and the Beaver Brown Band. When the theme from “Ghostbusters” came on, I felt, briefly, almost light.
It was a clear day. And when we followed the sloping road north into St. Cloud, the streets were clean and empty but for a boxy mail truck parked cockeyed in front of a shuttered storefront downtown. We opened the doors and our van filled with the lemony early-morning sun.
“Do you know of a place where we could get breakfast?” I asked the mail carrier as he approached, a small bearded man whose arms were full of envelopes.
“Me? I’d go to Perkins.” He grinned straight up at my son, who nodded at the man, twice, and turned to stare at the sky. “They can feed a big boy like yours.”
We left our car and walked over. It was one of those mornings where the quality of light can trick you, its intense yellow making you feel warmer than you really are. Inside we sat in a booth, facing each other over a scarred Formica tabletop. We ordered: monstrous muffins and eggs still slippery from a grill shellacked with years’ worth of industrial-quality oil, hash browns crisped and coated with ketchup.
“I’m trying to talk more,” my son abruptly volunteered. The dining room was staticky with midmorning noise — babies chattering, tables of women laughing, couples shuffling large sheets of newspaper back and forth between them — but his voice pierced through all of it, low and clear. He’d eaten his breakfast quickly and I’d given him mine to finish. He picked up my fork and wiped it carefully with his napkin, turned his head and coughed, then cleared his throat and returned to the plate but stopped, fork aloft, to look at me. I tried not to move. “It’s hard,” he said, finally.
I struggled to find an answer. But he was still, holding my eyes in a rare and brave way, forging contact through the air over the tabletop. And I realized he had not asked a question but simply stated a fact. I nodded and he nodded back, then bowed his head over my eggs.
I have studied and battled and revered this child. The main character in my novel is not precisely my son: Things happen to Edward (the boy in my story) that did not occur in real life. But it is certainly my older son’s spirit that carries the book, his profound remove and sense of quiet. The way he hovers, perplexed but dignified, on the edge of this tangled, noisy world.
The mother of my imagining also was wild to help her son; she loved him with a fury I know all too well. And in some moments we are the same person, she and I. When he was 7, I taught my son to write his name despite one teacher’s saying he never would, and my characters relived this scene in painfully accurate detail. I lost a marriage along the way, and it was easy to attribute the divorce to the stresses we’d faced as parents. Yet, there is also the specter of my husband’s voice, maybe a few weeks before he left, speaking in a tight whisper: “No matter what happens, you never stop pushing your way through! You are absolutely relentless. How does a person live with that?”
And this is where fiction comes in. Because in the book, my narrator reaches the same frenzied peak I did, but then she softens and somehow heals herself. There is an end, a point at which she is, finally, nearly as quiet and forgiving and gentle as the child. In life, however, I must keep learning his lessons over and over again.
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We are walking, the real boy and I, along a sidewalk in Fargo. The sun has stayed with us all day, but now, finally, it is beginning to wane, turning to the luminous white that precedes dusk — a wide, empty slate of sky.
This town is nothing like I had assumed it would be. There are galleries and restaurants, a perfectly restored art deco theater, a hotel where a local sculptor constructed a wall from pieces of history: a sheet of yellowed newspaper, an old-fashioned bedpost, the shard of a 1920s-era ceramic bowl. We move in silence side by side, though every 10 strides or so he must pause so I can catch up.
He has already found the pizza place where he wants to have dinner. When I ask where he’d like to go for cake afterward, he shrugs and says, “I’ve never really liked it when there is cake.” I take a breath and begin to argue, then stop, because suddenly I’m remembering this boy at 5 — sitting at a table in the reflected glow of burning candles, surrounded by people on all sides, staring at the floor and cringing as we began to sing. I exhale, and let go of the cake.
On the far northwest corner of Fargo’s six-square-block downtown, there is a narrow, recessed building, painted midnight blue, with the words “Taste of Seattle” written in script over the solid oak door. He notices this and stands still. “I’d like to go in there,” he says, and without another word, we do.
Inside there are wrought-iron tables with lamps and books and tapestries in a tie-dye swirl of colors and framed photographs and bottles of simple syrup lined up above a copper espresso machine. On the back wall is a cityscape, familiar to both of us, though we have not yet been — the tall buildings and omnipresent clouds, the Space Needle with its disk and spire. There is a chess set waiting on a low table, and after we order our lattes and take them, steaming in heavy cups, from the slick marble bar, we sit on either side of the board.
“I’ll play,” I say to him. “But I’m not very good. You’ll have to help me.”
He takes a sip of coffee and stares at me for a full 30 seconds. I see something in his eyes like a door opening and catch a glimpse of the boy I’ve been chasing for 10 years. Settling back in my chair, body loose, I breathe in the mocha scent and give him time to think. “It isn’t right to tell you how to move,” he says slowly. “But I’ll tell you if you do something wrong, and maybe you can take it back.”
“That’s all I can ask,” I say. And I advance my knight’s pawn two spaces.
This article originally appeared on
AlterNet.
There’s a danger looming in schools today that’s putting our nation’s most vulnerable children at risk. Around the country, teachers and administrators are struggling to meet the needs of a growing population of disabled students, and they are entering school environments ill-prepared to educate these children responsibly, thanks to a lack of both adequate training and resources. This lack of preparation for handling students’ special needs is, in turn, sparking a disturbing and dangerous trend: the use of harmful “zero tolerance” policies that end in seclusion, restraint, expulsion and – too often – law enforcement intervention for the disabled children involved.
From coast to coast, the incidents are as heartbreaking as they are shocking:
- In Brooklyn, NY, G.R., a 5-year-old autistic student, was traumatized when police were called to his school because he was having a temper tantrum. He was physically removed from the school by police and strapped to a stretcher, and when his family members tried to advocate for him, they were allegedly handcuffed. His grandmother’s ribs were broken in the altercation.
- In Albuquerque, a 7-year-old with autism was handcuffed by police officers called to restrain him. His “offenses” included calling other children names, knocking over chairs, spitting, and shooting rubber bands at a police officer.
- Tony Smith, a disabled student suing the Atlanta Police Department and his former school district, claims he was handcuffed to a filing cabinet for seven hours when the school investigated a crime that had taken place on campus. The officers involved, his suit argues, violated department policy and his civil rights.
- In 2010, autistic student Evelyn Towry made national headlines when she was arrested after becoming agitated because her teacher wouldn’t let her wear her favorite cow hoodie. Her Individualized Education Plan (IEP), which detailed her needs and how they should be met specifically, included a clause allowing the school to contact law enforcement in the event of disruptive behavior, though her parents report they neither saw nor approved the document.
Cases like these, of students trapped by school policies rarely designed to deal with the nuances of their diagnoses, are growing – and the situation is further clouded by race, class and social factors. These factors can determine what kinds of evaluations, interventions and treatments are provided to students with disabilities or suspected disabilities, and they ultimately decide whether children are able to successfully complete their educations or fall by the wayside.
Race, Disability, and Discipline in Public Schools
The increased use of law enforcement to deal with behavioral issues in schools gained heightened attention this year when Salecia Johnson, age 6, had a temper tantrum in her principal’s office and was handcuffed and detained by local police as a result. She was so traumatized by the experience that she has trouble sleeping at night – and she’s not the only one.
Such situations are growing extremely common across the United States, with school districts calling on police to handle routine disciplinary infractions rather than dealing with them on their own. Many have adopted harsh zero-tolerance policies, where infractions are handled with a one-size-fits-all model, regardless of age, ability or the larger context in which the infractions took place. These policies can effectively set some students on the path of what the Florida ACLU calls a school to prison pipeline – and, notably, many of the victims of this system, such as Salecia, are minorities.
Racial disparities when it comes to school discipline are well-established in the United States; students of color are twice as likely as their white peers to be subject to out-of-school suspensions, according to the Department of Education’s 2012 Civil Rights Data Collection. Yet often, there’s more to these cases than meets the eye, because many of the minority students who find themselves harshly penalized also happen to be students with disabilities, many of them undiagnosed.
Annie Linden is a former teacher who taught in districts primarily composed of low-income students of color, and she still participates in the preparation of Individualized Education Programs. In an interview with AlterNet, she noted that many of her former students showed signs of cognitive disabilities that went undiagnosed, sometimes due to parental fears about deportation or concerns that their children might be removed from school. The data suggest that these parents were right to be afraid: Students of color are already at a higher risk of expulsion, and disability can compound that risk.
Studies in individual states lend support to the critical importance of discussing race and disability together in the context of school discipline; this is particularly important given the considerable funding disparities between white and nonwhite children when it comes to disabilities like autism. Students of color are generally less likely to be diagnosed with disorders of these kinds, making it still harder to provide them with the support they need in educational settings.
When Disability Meets District Policy
Even without counting the many children with undiagnosed disabilities in schools today, we know that the overall number of disabled students in our public school system is on the rise. Increasingly, school districts are tasked with educating students with a wide range of intellectual, cognitive and emotional disabilities, rather than physical disabilities, as in prior decades. In theory, our ability to identify these disorders earlier than we could in the past should ensure that students get the support and access they need to succeed in school, including individualized education when it is appropriate. But in practice, the rise in disabled students is crunching school districts terribly, as funding for these students has not at all kept pace with the rise in diagnoses. As a result, many schools are now hard pressed to serve their students’ educational needs and deal with disciplinary issues.
As funding for special education drops and available staff members dwindle – and as disabled students with behavioral problems are increasingly mainstreamed in response to changing thinking on disability education – discipline is becoming a large problem in a growing number of mainstream classrooms. In response, some districts have decided to bring out the heavy guns for handling disruptions associated with disabled students; from outbursts in class to tantrums in the hall, the new go-to solution in many districts is to call the police.
In addition to calling on law enforcement, Disability Rights Oregon notes that there has been an uptick in the use of restraint and seclusion in schools, as well. The organization points out that these practices appear to disproportionately target disabled students and can be fatal in some cases.
Last month, 16-year-old Corey Foster died after police were called to restrain him. Though Foster’s disability status is unclear, he was attending a school for at-risk youth that included a number of students with disabilities, and his fellow students say restraint is a common disciplinary tactic.
In Jackson, Mississippi, students at an alternative school are routinely handcuffed for discipline infractions, and many of them have emotional or intellectual disabilities. Such treatment of disabled students is not uncommon; the Judge Rotenberg Center, for example, has been under media scrutiny for years due to practices like shocking autistic students. And a study on the use of restraint in Texas schools has indicated a looming “crisis in special education” as growing numbers of disabled students are restrained by their teachers, sometimes unsafely because these teachers had never been trained to perform such techniques appropriately. These cases involved school staff, not law enforcement, but they are part of a larger pattern of criminalizing disabled students that has been criticized by disability rights organizations.
In response to these reports, the National Disability Rights Network has called for an end to restraint and seclusion in US schools, and along with that comes a radical need to rethink the use of law enforcement in the management of disabled students. Police officers are typically not provided with specific training in working with disabled children, let alone handling the de-escalation of a situation where a disabled child is frightened and potentially reactive. As public safety officers, their primary professional goal is not to provide disciplinary support in schools except in special circumstances – and routine discipline is not a special circumstance.
Clearly, the use of police officers to assist with school discipline is out of proportion to the need, and yet it persists. Some school districts, such as Evelyn Towry’s, mandate a law enforcement provision in IEPs, which allows the school to call police officers to assist with discipline problems, often under a vague mandate that could involve anything from an episode of extreme violence to stubbornness in the classroom. Others districts may strongly advocate for it, or push for frequent review of disabled students to determine if such a clause should be added. Rather than focusing on handling behavior before it gets out of control, districts are handing their students over to third parties when the going gets rough – and disabled students are the ones paying the price for those decisions, often finding themselves suspended for extended periods of time over behavior they cannot be expected to control.
Teachers Struggling in Understaffed Environments
So why the push to outsource discipline? Blame austerity measures again, which, on top of poor disability funding, have hit a number of districts hard. That’s a recipe for frustration, and sometimes danger, when it comes to providing a safe and educational environment for disabled students. Teacher Alicia Maude Wein from Guildeland High School in New York explained to AlterNet via email how her classroom support had radically decreased:
[Before], it was me, a co-teacher with a literacy/special ed degree, and three additional adults providing support — 5 adults every day to the 18 kids. This year, after 2 rounds of deep budget cuts (in a relatively affluent suburban district), it’s just me.
Overwhelmed by conditions like this, teachers struggle to keep order, and Wein says she understands why districts might be tempted to turn to outside options:
I think similar circumstances (or worse) could be lending to the desperation that would sway some districts to call in outside supports like law enforcement (as grim, disrespectful and embarrassing as that notion is) when things get out of control in the classroom.
She noted that her district is generally supportive, promotes mainstreaming of disabled students, and works with students, staff and parents to create a productive environment, even under the stress of budget cuts. The same can’t be said of all districts, though, and in some cases the various pressures can create an explosive mixture: When staff without training for handling disabled students encounter autistic students mid-meltdown, for example, they may not know how to respond, and they could end up traumatizing students in an attempt to impose order.
This lack of teacher and staff training is a serious matter for both teachers and students; Wein herself pointed out that she’d taken just three credits in Special Education 15 years ago – and yet today she is faced with teaching and managing a classroom of disabled students. As the Michigan Education Association warns :
Because school personnel are not trained to work with children whose violent behavior stems from a disability and where the possibility of injury is discounted by the District, they daily face a situation they are ill-suited to handle without suffering injury, both physical and psychological.
Without the support they need to deal with disabled students and the training they need to effectively and humanely handle their behavior, there should be little surprise that so many teachers and administrators are allowing law enforcement to deal with these issues instead. But as Vicki Soloniuk, a pediatrician who works with disabled children and helps their parents to advocate on their behalf, pointed out in a conversation with AlterNet, the turn to these punitive measures can actually enflame a disabled student’s behavior rather than defuse it.
She explained that children with cognitive disabilities often have difficulty adjusting to new situations and strangers, so when an outside party like a police officer is called in, these children may experience extreme emotional distress. This can manifest in kicking, hitting and screaming – a fairly typical response among cognitively impaired children, but certainly unnerving if you have no training in dealing with such behavior.
“We tell our children to stay away from strangers,” Soloniuk said, “and then we don’t understand why they react poorly when the school calls in an outsider, someone a student has never met.” Like many school districts in the United States, the district Soloniuk works in responds to incidents like these by isolating the child involved, a mistake which can create even more behavioral problems. Soloniuk notes: ”The school hides a 7-year-old with autism alone in a classroom all day, and when they bring him out once a day, he starts flapping and stimming, because he sees all these kids around. So the school responds by saying, ‘He can’t handle it’ and locks him up again.”
She views such isolation as tantamount to torture and points out that it’s also ideally suited for creating further difficulties in the future because the student never has an opportunity to socialize. One way to address the issue, she says, is to get teachers and support staff fully trained; two working sessions a year, for instance, would allow everyone in a school to learn how to interact with disabled students so they can mainstream more successfully and be supported outside the special education classroom.
More Training, More Support Needed
After years of experience in the school system, Alicia Wein says she has come to feel comfortable with her disabled students, and she invests energy in interacting with them and their parents to learn more about their personalities and learning styles before entering the classroom. But not all teachers have this level of experience or the time required to give high-level individual focus to disabled students.
To begin to address these discrepancies, districts such as Wein’s are demanding that their teachers pursue more professional development, particularly when it comes to dealing with students with autism. Congress is also tackling the issue; lawmakers are currently pushing for better teacher training to help educators handle students with autism more effectively. Such training undoubtedly will be beneficial for both teachers and their students, but it certainly won’t solve the problem we’re facing entirely; even an experienced teacher with additional professional development can’t be expected to keep order all alone in a classroom of 12 students with severe disabilities.
Simply put, districts also need more trained staff on hand. Teachers handling mainstreamed classes require support to balance the needs of their disabled and nondisabled students and to make sure that every student is provided with the educational material and assistance he or she needs. Without staff support, students inevitably begin to fall through the cracks, and one consequence of that can be an increase in disruptive behavior. Overburdened instructors may fail to identify the warning signs of a tantrum or meltdown, for instance, making it difficult for them to intervene early on – before things have escalated beyond their capacity to deal with them. And even if they do spot a troubled student who needs more personalized attention, that level of engagement can often be impossible to provide in a classroom with 25 or more additional students vying for their attention. Trained staff can help mediate situations like these.
Another issue that came up again and again with educators who spoke to AlterNet was the impact of our increasing reliance on standardized testing to measure performance in the classroom. High-stakes testing creates a highly pressured environment for teachers, who are forced to focus on the tests rather than on their students’ learning needs – especially if the teachers don’t have tenure or secure positions in their districts. All students, regardless of disability status, suffer in this environment, where teachers are asked to view students not as individuals, but as aggregate test scores.
Bottom-up educational reform often focuses on teachers and blames them for the failures of the educational system. But this approach largely ignores the structural issues plaguing many districts as they fight for funding, cut student and staff services, and live in fear of the latest test results and what they mean for the school’s future. For students with disabilities, these issues are further complicated by the need to access a functional educational environment where they will be safe from harm and not at risk of run-ins with the police. In this educational landscape, it’s hard for disabled students to learn, let alone realize their full potential.
Poor training, funding cuts and increased pressure to teach to the test don’t add up to much for the most vulnerable students in our schools – or many of the other students, for that matter. “Sadly,” Vicki Soloniuk points out, “we don’t seem to care very much about our kids in this country.”
s.e. smith is a writer and editor whose work has appeared in Bitch, Feministe, Global Comment, the Sun Herald, the Guardian, and other publications. Follow smith on Twitter: @sesmithwrites.
In the last few weeks, new autism figures have created widespread controversy among American parents. In early April, the CDC released its latest, shocking report on the disorder, which showed a massive uptick in the number of diagnoses — according to the numbers, one in 88 children and one in 54 boys are now on the autism spectrum. That’s an astonishing 78 percent increase since 2002. In the weeks since, pundits and doctors have spent a lot of time debating what these changes actually mean: Are they due to increased detection, loosened definitions of autism or are we in the middle of a genuine upsurge in autism among American children? As Dr. Thomas Frieden, the director of the CDC, told reporters, this change may “entirely the result of better detection. We don’t know whether or not that is the case.”
For Temple Grandin, the country’s most high-profile autistic person, this news is a source of both relief and concern. Grandin was diagnosed with autism at the age of 2 and didn’t speak until age 4, but went on to become one of the country’s best known authorities in livestock facility design. (In 2010, she was the subject of a well-received HBO biopic, “Temple Grandin.”) Grandin is also the author of several books, including, most recently, “Different … Not Less,” a collection of inspiring personal essays by people on the autistic spectrum who are also gainfully employed. The collection, she tells Salon, was meant to inspire young people with autism to attain successful working lives.
Salon spoke to Grandin over the phone about the newest autism numbers, the problem with autism awareness — and what the government can do to help parents with kids on the spectrum.
The CDC recently released a shocking report that showed a huge uptick in autism numbers. What do you make of it?
I’m very familiar with those figures. One big question that’s come up is: Has autism increased on the mild side of things? I don’t think so — they’ve always been here. Some of this is increased detection. I’ve worked with tons of people that I know who are on the spectrum — but now I think severe autism has really increased. There may be environmental contaminants. I read an article the other day that a supposedly very harmless pesticide on cattle was making bulls infertile, so this brings up the issue of genetics.
There is some concern that by expanding the numbers of people with autism, the CDC is diluting the autism diagnosis.
The problem with these diagnoses is they’re not precise. They’re talking about changing the DSM and replacing it with Social Communication Disorder and they’re sitting around in rooms discussing it. It’s not a precise diagnosis like tuberculosis. You show certain behaviors, like social awkwardness, or fixated interest or repetitive behavior, and that’s labeled autism. But it’s a very big spectrum. On one hand you’ve got people working in technology jobs and on the other hand you’ve got someone who’s nonverbal with epilepsy, and that’s one of the big problems. Steve Jobs would probably be on the spectrum, and so would Einstein.
On the other hand, this newly expanded number may also make a lot of parents of kids with autism feel much less alone.
I think that’s really important. When I was young my mother was totally alone. It would have definitely made a lot of difference. She would have had other parents to talk to in a support group and none of that existed in the ’50s.
Nevertheless, while people have been talking a tremendous amount about autism and Asperger’s in recent years, you suggest that’s not been entirely productive for children with autism.
To a certain extent it’s a good thing. On the other hand, you get to the smart kids who could go have successful careers in Silicon Valley getting held back by labels. One kid goes to Silicon Valley, the other stays home to play video games, and they’re the same geek. I visit people in [autism] meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career.
Is that the reason why you put together an essay collection like “Different … Not Less”?
The thing that motivated me to to put it together is seeing way too many people with high functioning autism and Asperger’s not getting jobs and making transitions to adult life. Having worked in a technical field my whole adult life, I think, “Where are the aspies?” I think about people I went to college with, the geeky kids, different kids. One of the things hurting people with Asperger’s today is they’re not being taught social skills from old people on the spectrum who managed to be employed their whole life.
So we got about 25 entries [for the book] and I picked half of them. Some of them are people well known in the autism field but I also wanted to have a wide variety of people. They had to be employed their whole life and have an actual diagnosis, but they all had childhood jobs, they all were bullied in school, and I wanted to show that to young people on the spectrum. I didn’t fill it up with happy people in Silicon Valley. There is a person who is a tour guide, a doctor, a psychiatric aide, retail clerk, advertising executive. There’s a real big variety of people, and they talk about how the diagnosis helped them to understand their problems.
There was one person who was a computer lady. Her dad died and she was devastated by that. She got diagnosed because she got depressed. Her boss asked her, “If you’d gotten the diagnosis when you were younger, would you have achieved what you achieved?” The problem with some of the young people on the spectrum is that parents are reluctant to push them out of their comfort zone, and they’re unemployable. I wanted to show in this book that we can succeed.
The same week the new CDC figures were released, another study found that mothers of autistic children are 56 percent more likely to be under the poverty line. Why do you think that is?
Autistic children are very difficult to take care of, especially severely autistic ones. When I was 4 I had almost no language; when I was 3 I had none at all. It’s much more work for the mother of an autistic child to have a job, because working with an autistic child is such a hassle until they go to school. Then it might be easier, but there are still likely to be more interruptions and things, and a mother might be restricted on what she can do in terms of travel.
What do you think needs to be done in order to change that?
My mother’s been working with a group called Families Together. For a family that has severely autistic kids, the divorce rate is through the roof. [Families Together] put on weekends where families meet up and they get the whole family working together so they don’t get so frazzled and fall apart. That’s a huge issue.
Should there be more government support for parents with kids on the autism spectrum?
Parents need to have respite so they can go out to a restaurant and have some time off. That’s a huge problem for parents. And then there’s the cost of therapy, a lot of schools have only two hours of speech therapy per week. If you talk with these kids when they’re very young, 20 to 30 hours a week with a good teacher, that improves the prognosis. But then you also need better services for adults. If you’ve got a non-verbal adult, what happens after he’s 21 or 22 and he ages out of school? That’s a huge problem, especially for severely autistic adults.
The first person I ever heard call my child “autistic” was the story lady in the children’s section of the Duluth Public Library. January 1991.
My young husband and I had moved to the Iron Range for a number of romantic reasons. We thought it was beautiful and in some way more “authentic” than the place we’d been living. We also believed the clean lake air would cure the asthma suffered by our younger son. What we failed to take into account was the 14 percent unemployment and a taconite-weary city with little but service work.
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.
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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.
(Credit: Alexander Raths via Shutterstock) 
Temple Grandin (Credit: Rosalie Winard) 
(Credit: ZouZou via Shutterstock/Salon) 
Republican presidential candidate, Rep. Michele Bachmann, R-Minn., speaks during a rally in Costa Mesa, Calif., Friday, Sept. 16, 2011. (AP Photo/Chris Carlson)(Credit: Chris Carlson) 
In a Thursday, Sept. 8, 2011 photo, Republican presidential candidate Rep. Michele Bachmann, R-Minn., delivers the Republican response to the speech by President Barack Obama to a joint session of Congress at the Capitol in Washington. Starting this weekend, Bachmann plans to campaign almost exclusively in Iowa as she tries to reassert herself in a race that's become a two-candidate contest between Texas Gov. Rick Perry and former Massachusetts Gov. Mitt Romney. (AP Photo/Cliff Owen)(Credit: Cliff Owen) 
