Denis Leary is anything but apologetic. From the hapless machismo of his character on “Rescue Me,” the fireman drama he created and writes for FX, to the title of his new book, “Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid,” Leary has a knack for pushing buttons with brash views that sometimes feel like empty provocation. Cast even a cursory glance at the chapter titles of his book — “I Had Sex With Kathie Lee Gifford (And She Was Amazing),” “Matt Dillon Is a Giant Fag,” “Autism Shmautism,” “We’d Hate You Even If You Weren’t Black” — and you’d assume that the entire tome is filled with nastiness and ignorant, insensitive opinions.
But Leary’s book and his views are a little more informed and evenhanded than they first appear. Although activist groups have taken issue with Leary for suggesting that autism is caused by bad parenting, in his book Leary very clearly takes on the parents of kids who aren’t autistic — autistic kids are smart and industrious, not lazy and stupid, he points out — but who seek out the diagnosis as a means of explaining away their kids’ flaws and their own ineptitude.
The funniest, most colorful passages concern his family, from a brother whose standard greeting when they were little was “Hey faggot!” to a mother who still enjoys pointing out the gruesome ways that each of the people in her old photographs died. In another chapter, Leary scratches the surface of the Oprah phenomenon, only to find himself overwhelmed by the wealth of information Oprah has to share, her enormous range as a host, and her sheer, unquestionable power.
Leary called from his home in New York City to talk with Salon about George Carlin’s legacy, the culture of permissive parenting and the controversy surrounding his book. Far from the violent frat boy he portrays on his show, Leary not only referred to himself as a “dyed-in-the-wool Democrat” but said that he considers himself a feminist. Still, he insisted that if no one is pissed off, that means he’s not doing his job.
When you’re used to writing stand-up or dialogue, is the process of writing a book difficult?
Well, I mean I hate to say this because I think real writers will be upset, because [with] comedians, it’s kind of a cheat. We’re thinking these things anyways. Yeah, it’s work to put it down on paper as opposed to just getting up onstage and saying it.
I was just down in Washington last night for the George Carlin tribute [Carlin was awarded the Mark Twain Prize for American Humor, announced four days before his death in June] and there’s a roomful of all these comedians, most of these guys have already written a book. Bill Maher was there and Lewis Black has written a couple of books now, and Jon Stewart. You know, they were all making fun of me because I was the last guy to come out with a book.
I interviewed Carlin last year, and he said that he didn’t become a real writer until about halfway through his career, and it really improved his stand-up routine.
It makes you sit down for four hours a day and formalize your thoughts. There’s a rhythm to it. The kind of comedy I do anyway is sort of an observational, satirical take on whatever — politics, society, behavior — but there’s a rhythm to comedy that’s kind of musically oriented. When I had to read these things out loud, it [made me want to] go back and rewrite it and find the right word. I liked it, I can’t wait to do another one.
Do you count Carlin as an influence?
Oh yeah. I didn’t know anything about Lenny Bruce until I discovered [Carlin's album] “Class Clown” in 1972 because the Catholic Church bulletin had a thing that said “Banned Books and Records” and they named “Class Clown,” and that’s what made me buy the record because that’s just the kind of guy I am. And as soon as I heard that record, I said, “I know guys like this. And I’m an Irish guy. Maybe I could do this.”
You’re sort of following in Carlin’s footsteps in terms of provoking a big reaction in the press. You’ve already caught some flack from autism activists about the chapter “Autism Shmautism.” But you’ve said that your words were taken out of context.
If you read the book, you know that they [reacted to] the exact opposite of what I was saying. I never said that autism didn’t exist. I never said that parents caused autism. I wasn’t defining autism, I was discussing it as a comedy doctor, not a real doctor. I was pointing to a real issue that exists, which a lot of people who deal with the issue and have children with autism have since e-mailed me to say they not only identify but agree with. Which is people who are, believe it or not, seeking out low-level diagnoses of [autism in] their kids to get a special needs recognition or to explain away the behavior. There’s no comedy point of view in saying there’s no such thing as autism, which is why I didn’t say it. The comedy point of view is to point out the ridiculousness of wishing away your child’s behavior by saying, “Oh, my kid’s special.” And that’s what I set out to say.
You wrote that the autistic kids who you know are smart, and if your kid is really lazy and stupid, that’s probably a sign that he’s not autistic.
The issue really is about lazy parenting and about the ridiculousness of seeking out or self-diagnosing yourself into that category. I did feel that when they pulled the words out, they did it without telling people what the chapter was about. I don’t blame people for being upset, because if I had read that, I would’ve been upset, too.
You weren’t exactly taking a cautious stance with this book, of course. You also wrote, “Please drug your children” and “You have to hit kids, you have a responsibility to do so.” Do you want to explain either of those?
You could also take something out of the “We’d Hate You Even If You Weren’t Black” chapter and make me look like a racist, I guess, if you wanted to approach it that way.
You seem to be taking a stab at the culture of permissive parenting.
Well, I think we all know that there are reasons that you tell kids yes and there are reasons that you tell kids no, and that’s part of good parenting. It’s become really an exercise for a lot of people in this country. They don’t have the time or the desire to pay attention to their kids, so they just yes their kids to death, and what you end up with are kids that are dying to have someone tell them no. And the reason that there’s a good smack on the ass is because it kind of works sometimes.
Have you had any backlash from your own kids when you were too harsh with them?
I think we’ve been pretty evenhanded with our kids. We ended up with two smart kids who would kind of tell us when we were being a little ridiculous with the punishment. But it’s like the whole issue of “We don’t want our kids watching this stuff on TV.” Well then, you’re going to have to actually watch your kids while they watch TV. At a certain age, they’ll find whatever they want. But if they’re in your house, you can pretty much control what they do and how they do it and when they do it, if you’re paying attention.
Are you in New York or L.A.?
I’m in New York.
I ask because I sometimes see parents giving in and taking the path of least resistance here, and I wonder if it’s a California thing or maybe an urban thing.
I think it actually happens all over the place. Because my kids were raised primarily in the country, and I certainly witnessed a lot of it out there, too … And then there’s the whole self-esteem thing, where everybody gets a trophy and we’re not gonna keep score. Well, you don’t really learn anything from that, except I should get a trophy every time I do something, whether it’s right or wrong, good or bad. That system doesn’t really work, and you end up with 30-year-olds who go, “What do you mean I have to have a job?”
Actually, quite frankly, I think you get people like George Bush [from that approach], you know? Where they’re so convinced they’re right and they can’t believe that anything’s going to go wrong, because God’s telling them [what to do].
You say at some point in your book that kids should stay home with their mothers. If Mom’s a Nobel Prize winner and Dad works at Taco Bell, should Mom quit her job to stay at home while Dad leaves to man the sour cream gun?
These are general rules, not hard and fast rules. I think the majority of [parents] realize that most of the time, kids want their parents to be a yin and a yang. And they almost always will expect more from their mom than they will from their dad in certain circumstances. Obviously if someone is the breadwinner and someone else is the stay-at-home person, the situation can be switched. But in general if a kid falls down, they want their mom.
It made me wonder if you think that daycare is bad for kids.
No, I think daycare is great for people who have to work two jobs. My problem is with people who are dropping kids off at daycare because they want to go out and spend the day golfing or getting their nails done. You know what I mean? That’s not why they invented daycare.
Have you heard from any of the people you mention in the book? Has Kathie Lee Gifford given you a call, for example?
Yeah, she did. She booked me for a show next Thursday.
That’s funny. And Matt Dillon, he’s a friend of yours, but how did he feel about his chapter (“Matt Dillon Is a Giant Fag”)?
I passed that chapter by him before I used it, because he’s a friend of mine. But that’s one of those things that actually makes Matt look great. It’s one of those ones that, if I changed it to another guy friend of mine, they would’ve been fighting over being the guy who got mentioned.
Have you been criticized for using the word “fag” at all?
No. I really didn’t expect to, because the word is used in the book the way it’s used in real life, at least among the guys I know. But I did an interview with The Advocate, and they loved the book. I don’t think anybody uses the word “fag” more than the gay guys that I know, quite frankly.
You say that you don’t believe the power of words. Can you explain what you mean by that?
I saw it explained last night by George Carlin because I introduced the clip where he did his original routine of the Seven Words [You Can't Say On Television]. Part of my introduction was about how it’s still being argued by the Supreme Court this week, 40 years later. As George described it, there’s a bunch of words that we all decided we can’t use because they mean certain things, which is good, because without those words, there’s no power in the use of those words in the occasions when you do want to use them. “Motherfucker” and “tits,” all seven of those words, they have great sound and they have great meaning, whether it’s good or bad. They’re great words. So if the Supreme Court said tomorrow, “Everybody can say them,” they lose their power, whether the power is good or bad, because they’d be on “Friends” at 8:30 at night on network television. So there wouldn’t be the fun and the edge that they have.
Your wife wrote a novel and Gawker wrote that one of the characters appeared to be modeled after Elizabeth Hurley. What’s your take on the media guessing about such things?
Well there’s not much you can do about it. It’s sort of the nature of the beast. There are times when it gets ugly and there are times it makes no sense and there are times when there’s a sliver of truth to it. There’s nothing you can do about it.
You don’t seem to censor yourself either way.
It obviously pisses me off and angers me when they get it wrong, but you know, I have enough public access. Because I’m a comedian I can get up onstage or on a talk show or into an interview and defend myself or say what I want in response, so it doesn’t really worry me.
And any skeletons that are in my closet, I talk about anyways, you know? I’d never run for public office, but, it’s kind of like when they were saying that thing about Cindy McCain, when they were talking about her prescription drug abuse during the campaign, and somebody said, “Well, why doesn’t somebody talk about Obama’s cocaine abuse?” Well, he wrote about it! It’s in his book! So I kind of feel like, what do you want me to do? Nobody can make more fun of me than I already make of myself. Whatever they wrote today, it’s like that great line in that Elvis Costello song about how the newspapers are wrapping up fish the next day anyway.
Is there anything you regret writing about in your book?
No, not at all. I write what I think is funny and I write from a sense of popping a balloon or a sense of injustice, whether it’s about yourself, or whether it’s about something else. It’s my worldview, it doesn’t mean that everybody has to agree with it. Last night there was a great quote from George Carlin — I know I’m stuck on him but that’s just because it’s so fresh in my mind — he said, “The comedian’s job is to find where the line in the sand is drawn and then cross over it.”
I’ve always felt like, if you were pissing people off and you were funny as a comedian, then you were doing your job, because there should be some people that are pissed off. If everybody was happy, that meant you were going down the middle of the road. There’s a great quote from Paul Newman when he died, which is, “If you have no enemies, you have no character.” I think that sort of describes what a good comedian is supposed to be doing.
When people meet you are they surprised that you’re different than they expected? What do they expect?
Some people expect me to be funny all the time, and I’m not necessarily funny all the time.
I was a little bit surprised by your chapter on Oprah. You wrote that you expected to find her annoying, and then, slowly, her immense power and reach in the world began to reveal itself.
Yeah, I gotta be honest, I just didn’t expect to see that much information on display, and I didn’t know about it.
Did you watch her show?
No, I didn’t. I thought I had enough information, and then when I sat down to write [that chapter], I had to get more [information], and then the more I got, the more surprised I was, and the more surprised I was, the more I kept going. Finally I was like, “Oh my God! This is crazy!” I said in the book, and I really believe it, they should have a show [like Oprah's, but] with Jon Stewart. If he did “The Daily Show,” and while he was ranking on the news of the day, he also gave you the sports scores and told you about things that could possibly break your penis? Then that would be the only show guys would ever watch.
Have you ever been on “Oprah”?
No, but I’m doing her radio show on part of the book tour, so that’ll be interesting.
You might have some trouble keeping your cool, being so close to such omnipotence. Every time I see her on TV, I’m amazed by her charisma and genius.
That’s how I got stuck in that chapter. I got overwhelmed!
That’s right. She’s like a shapeshifter.
She’s like a shaman.
I like the part where you say that there’s Mad Oprah, Sad Oprah, Holier Than Thou Oprah, Down and Dirty Oprah, etc.
I know, that was really unbelievable. I started watching episodes and snippets and pieces and I was like, “She tells you everything!”
And she’s appropriate to every moment. That chapter made me wonder, despite some other remarks you make in the book, if you consider yourself a feminist.
Yes, I do.
I thought so, but I wouldn’t have gathered that from the rest of your book.
Of course not, because I’m a man. But the truth is, if you’re really looking between all those lines, and I actually come close to saying it a couple of times … It’s actually serendipitous that we’re talking about Oprah, because when you come right down to it, whether it’s my wife or Oprah or my mom, women rule the world. And we’re [men are] just sort of in it. We’re in it and we’re using the towels, and we’re trying to remember the name of the color of the towels, and we’re hoping that we get the name right. We know that you might be pissed off — that’s why I say that Jon Stewart has to become the male Oprah, you guys have your Oprah. We need to have a guy who can tell us at 11 o’clock at night what the scores are, why our girlfriend or our wife might be pissed off, and how we can make her happy and keep our penises.
You seem to imply, in your book, that men are slightly inferior to women, although you don’t come out and say it.
I do think that that’s true. Ultimately, especially having raised children, if guys were left alone … I don’t know what would happen, but I think we have pretty good evidence: A lot of stuff would get blown up, there’d be a lot of really stupid fights over stupid stuff. And because there are these giant weapons, a lot of the time they’d be going, “Man, I wish we hadn’t blown each other up.” And also, I just don’t think it’s possible to be civilized and have children get all the information they need without a strong female hand. It’s great we’ve got a black president and it’s really kind of imperative that at some point we get a female president, too.
You know, “24″ is coming back with a two-hour special, and there’s a female president in it, but honestly, it was hard not to think, “Would the country really listen to a woman in her 50s?” Because no one listens to older women, they’re ignored. Ask my mom. Except for Oprah.
See, that’s the thing. Oprah would be a great president. If Oprah ran for president … which, by the way, maybe that’s the next thing! Obama does eight years, and then Oprah steps in. You know, in the book, I talk about how she can shame people into things? Because she’s sort of relentless. So not only is everybody going to be forced to do the right thing, but because she’s so open about weight and about clothing and about her greedy desires to own stuff and her private desires to change … She’s the ultimate leader, you know what I mean?
And there could never be any scandals, like you said, because everything is already out in the open.
Yeah, there are no scandals with Oprah, because if there’s a scandal she’s going to talk about it.
Now we’ve done it. We’ve taken the enjoyment of having a black man as the president of the United States, and we’ve already discarded that, and become unhappy, and now we want Oprah!
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.
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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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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.
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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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