Autism

Disabled — and handcuffed at school

Underfunded schools are facing an influx of students with disabilities -- and using increasingly brutal discipline

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Disabled -- and handcuffed at school (Credit: Alexander Raths via Shutterstock)
This article originally appeared on AlterNet.

AlterNetThere’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:

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.

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.

Grandin on the autism surge

Temple Grandin tells Salon what the new numbers mean to her, and why increased autism awareness isn't always good

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Grandin on the autism surgeTemple Grandin (Credit: Rosalie Winard)

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.

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Thomas Rogers

Thomas Rogers is Salon's Arts Editor.

The new autism reality

The recent stats may seem scary. But as a mom who worried in solitude, I know there's hope in not being alone

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The new autism reality (Credit: ZouZou via Shutterstock/Salon)
This story was originally published on Ann Bauer's blog, The Forever Marriage.

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.

- – - – - -

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.

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Ann Bauer's novel, "The Forever Marriage," will be published by Overlook Press in June. This article came from her blog, which you can read at www.theforevermarriage.com.

Bachmann: It’s ok to spread lies about vaccines because I never said I’m a doctor

After claiming that the life-saving HPV vaccine causes "mental retardation," the candidate declines to apologize

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Bachmann: It's ok to spread lies about vaccines because I never said I'm a doctorRepublican 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)

The other day, Michele Bachmann said that the HPV vaccine made someone “mentally retarded,” which is not only untrue but also the sort of remark that leads to parents denying their children vaccines that could save their lives.

When confronted on this, after a few days of both liberals and conservatives decrying her, Bachmann did not really apologize or correct the record. Instead, she said it’s OK for her to say things like that because she never told anyone she’s a doctor. As long as you don’t lie about a doctor, you can claim anything you like about medical matters, on TV, and it’s OK! (I’m not a doctor but I heard that if you make your baby wear a onesie with a “funny” slogan on it your baby will die.)

From the San Francisco Chronicle:

“I didn’t make any statements that would indicate I’m a doctor, I’m a scientist, or making any conclusions about the drug one way or the other,” she said, adding she was merely relating the concerns of a woman who was “very distraught” and who supported her view that Perry’s actions were wrong.

Asked specifically if she would apologize for the HPV comments, Bachmann said, “I’m not going to answer that question.”

So, no, she will not apologize for that. She won’t apologize because she still needs the HPV issue to hammer Rick Perry, which she is still attempting to do.

 

No more “retardation” talk! Just “mandates” and crony capitalism.

Michele Bachmann, by the way, did used to campaign around Minnesota as “Dr. Michele Bachmann.” Bachmann called herself “Dr.” because she has a J.D. from Oral Roberts University. (While some lawyers argue the point, “Dr.” is generally reserved for medical doctors and people with Ph.D.s.) But she hasn’t called herself “Dr.” recently, so make sure not to take any medical advice from her.

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Alex Pareene

Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at apareene@salon.com and follow him on Twitter @pareene

Michele Bachmann moves to the left (on crazy conspiracy theories)

The suddenly flailing 2012 candidate adopts the popular liberal myth that injections are dangerous

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Michele Bachmann moves to the left (on crazy conspiracy theories)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)

Michele Bachmann said that the HPV vaccine makes babies “retarded.” This is easily the dumbest, most irresponsible and inflammatory comment she’s made in years. It began at Monday’s debate, when she attacked Rick Perry for his now infamous decision to require that girls receive the vaccine. “Little girls who have a negative reaction to this potentially dangerous drug don’t get a mulligan.”

She accused Perry of only supporting the policy for money:

What I’m saying is that it’s wrong for a drug company, because the governor’s former chief of staff was the chief lobbyist for this drug company. The drug company gave thousands of dollars in political donations to the governor, and this is just flat-out wrong. The question is, is it about life, or was it about millions of dollars and potentially billions for a drug company?

She got worse after the debate, on Fox and the “Today” show, when she said an unnamed mother told her that her daughter became “retarded” after receiving the vaccine.

Obviously there are no cases of kids becoming “retarded” after receiving the HPV vaccine. I am pretty sure Bachmann meant to reference the popular myth that vaccines (usually the common MMR vaccine) cause autism, but she got confused.

So she either repeated some hearsay some random person told her as factual at a nationally televised presidential debate and then twice more on television because she’s an imbecile, or she is cannily reaching out to the sizable number of paranoid parents with misguided concerns about vaccines. She has a very good ear for the sort of scary story people half-hear on the news or get the gist of third-hand from a friend — her first school board run was built on horrible tales of what the government was secretly doing to your children.

So, in that sense, this is completely unsurprising. Bachmann is an avowed enemy of science, running to represent a party that of late has decided that scientists are untrustworthy liberals. She has a long history of parroting conspiracy theories and believing and repeating anything she hears or reads that reflects her biases.

But this isn’t your typical right-wing conspiracy theory, about climate scientists plotting to destroy capitalism, or the U.N. using bike-share programs to institute a world government. This, this is a liberal conspiracy theory.

The “vaccines cause autism” lie is as liberal as conspiracy theories get. Crunchy coastal elites, panicky about the health of their babies in a world full of “toxins,” are the ones not getting their kids vaccinated these days, because of something they read on the Internet (or saw on “Oprah”). The story has traction in part because it’s anti-corporate. It insinuates collusion between the government and those damned pharmaceutical companies that are only out for profit. (The scientists, too, are in the pockets of big pharma!) This stuff doesn’t get much play on the right, because it doesn’t tap into the foundational myths of the conservative movement or play on their tribal fears. Right-wingers are more concerned about their babies being exposed to the mental toxins of liberal indoctrination than, say, mercury.

This is why Ace of Spades is mocking her. It’s why Rush Limbaugh said she “jumped the shark.” It’s why the Corner featured multiple posts strongly decrying Bachmann’s “dangerous flirtation with the anti-vaccine movement.” Conservatives oppose giving girls the HPV vaccine because they want premarital sex to have (potentially deadly) consequences, not because they think vaccines are inherently dangerous.

But vaccine panic is big. It’s specifically big with mothers. With Rick Perry sucking up Bachmann’s support, she needs to branch out a bit. This is her version of “moving to the center.” Michele Bachmann moderates her message by adding liberal conspiracy theories to her repertoire.

What is actually funny is that Perry only ever did the right thing in the first place for the wrong reasons. Everything Bachmann said about the Gardasil deal being an example of crony politics is totally true! A drug company hired Perry’s former chief of staff to lobby him to do something that would make them money. But sometimes the special interests looking to maximize their profit are maximizing their profit by doing something good. (Like, say, Internet companies fighting for net neutrality.) The lesson here is that Planned Parenthood should give Rick Perry a couple thousand dollars and watch him turn pro-choice.

So Bachmann, in going after Perry for coziness with industry lobbyists while also latching on to vaccine toxin panic, is now the Republican Party’s most liberal 2012 candidate. (She did already go after Obama on the African-American unemployment rate. Maybe she’s been a leftist this whole time!)

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Alex Pareene

Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at apareene@salon.com and follow him on Twitter @pareene

Vaccines still safe, non-celebrities with medical expertise report

Is the Huffington Post done giving a platform to those who popularize a fictitious autism link?

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Vaccines still safe, non-celebrities with medical expertise report

Oliver Willis brings word of yet another panel of scientists announcing that there is no link whatsoever between the M.M.R. vaccine and autism. “The M.M.R. vaccine doesn’t cause autism, and the evidence is overwhelming that it doesn’t,” said Dr. Ellen Wright Clayton, who knows what she’s talking about despite not being a celebrity.

Now for the bad news: At some point the Huffington Post’s gloriously deranged “Living” section was replaced by “Aol Health Living.” It still has Deepak Chopra, but there seems, upon a cursory perusal, to be a lot less “integrative medicine” and all-natural holistic cure-alls peddled by Hollywood quacks. It looks like anti-vaccine nut Jenny McCarthy last contributed to the HuffPo way back in January.

One more clue that things have changed over there: The HuffPo even reported on this study! See, there it is, way at the bottom, under every other headline:

They just publish the AP write-up of the review, which does not, of course, mention the HuffPo’s role in popularizing the myth of a link between the M.M.R. vaccine and autism.

In other news, right after she backed out of her deal with Oprah’s new network, NBC Universal signed Jenny McCarthy up to launch a daytime talk show. Hooray, millions more parents will be exposed to her dangerous bullshit.

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Alex Pareene

Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at apareene@salon.com and follow him on Twitter @pareene

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