“This is a great day for medical science,” said Dr. Ernest Eagerly, Director of the Department for the Medicalization of Humanity at Albatross University. “Our research team sorted through a myriad of studies linking autism to everything from pet shampoo to freeway traffic to creases in the placenta. After controlling for variables in the research such as usefulness, rationality, shameless self-promotion, and general hysterical posturing, we determined that all of the studies had one thing in common: people with autism are alive.”

But that’s not all, according to Dr. Eagerly. “Not only are people with autism alive, but their parents are also alive — a clear and dramatic indicator of an underlying genetic mechanism. This new understanding opens up exciting avenues for treatment and cure. If we can locate the gene that controls for being alive, we might just crack the autism puzzle once and for all.”

Autism is a neurodevelopmental disorder that has stolen the souls of 1 out of 88 adorable children who otherwise look completely human. There is no cure.

While the latest research findings are dramatic, experts caution the general public that it’s important to be circumspect. “Being alive takes many forms and one has to be on guard against them at all times,” said Jenny McWhatsHerName, spokesperson for Only My Generation! (OMG!), an organization dedicated to the proposition that an epidemic of aliveness began with the development of vaccines. “Aliveness is not just a simple question of breathing,” she said with a giggle. “I mean, duh! You can’t simply hold your breath until you pass out and think that you’re going to be able to beat this autism thing! Laughing, loving, feeling at ease with your life — these are all warning signs.”

What’s the bottom line, according to OMG!? “Be afraid,” she said. “Be very afraid.”

Dr. Eagerly agrees. “We have found that the best defense against a diagnosis of autism is to sit completely skill and live in abject fear. I know it seems extreme,” he added, “but what’s the alternative? Enjoying your life? That will only result in hordes of people with autism being released upon an innocent and unsuspecting public.”

Because the only known remedy for being alive is dying, researchers stress that a cure may not be in the offing for several years. “It’s a tricky situation,” said Dr. Eagerly. “How do we separate autism from being alive, when the two are so closely linked?” He lauds the efforts of organizations like “OMG!” that suck the will to live right out of autistic people and their families.

“These organizations are on the cutting edge,” he said. “Just keep sending them your money.”

© 2013 by Rachel Cohen-Rottenberg

No, I’m not sick of Autism the Condition. That I can live with, although it’s a complete pain in the ass sometimes. But what isn’t?

So that’s not what I mean. I’m talking about everything that isn’t actually the condition:

Autism The Event.

Autism the Tragedy.

Autism the Gift.

Autism The Epidemic.

Autism the Blessing.

Autism the Puzzle.

Autism the Next Step in Human Evolution.

Autism the Reason to Pound People Over the Head Because My Life Sucks Worse Than Yours.

When it comes down to it, what am I really sick of? I’ll tell you: I’m sick of autism The Condition That Must Be Interpreted.

Do we really need one more study about what causes autism? Do we really need one more article about how people with autism rock your socks off? Can we stop with the inspirational memes about autistic geniuses Who Overcame The Odds And Beat Autism Into The Ground? Can we call a moratorium on posts about how autism is an Epidemic of Tragic Proportions Never Before Seen By Human Beings? Can we please, please, please stop talking about autism as though it’s actually a thing that stands alone from actual people?

I know I’m old and jaded. Well, no, not really. Yes, I’m old. But I’m not jaded. I’m the opposite of jaded. I long for the time before autism was A Thing. I grew up before autism was A Thing. I grew up just being, you know, a kid. Just a kid. A kid with lots of what are now politely called issues, most of them unarticulated, but just a kid. I played baseball. I climbed trees. I stayed up till all hours. I read lots of books. I was quiet. I was kind. I had lots of plans for the future.

It would have been good to have articulated my issues. Seriously. I wish someone had helped with that. I wish someone had taught me how to take care of the body and mind that I had been given, rather than the body and mind that everybody thought I’d been given. I wish someone had given me a language for the particulars of how my mind and body work so that I wouldn’t spend the next 50 years of my life driving myself into the ground.

Really. I do wish for all that.

But I am so, so glad that autism wasn’t A Thing then. So glad. Because now it’s A Thing — A Thing that shadows me wherever I go. A Thing that I have to decide to disclose or not. A Thing that’s like a big box that I’m supposed get in and stay in and say This is Me. I often wonder who made that box, and I often wonder why they made that box, and I often wonder why people spend so much damned time talking about that box, worrying about that box, describing that box, and making money off that box — and spend so little time listening to and providing support to the people they’ve put in that box.

And sometimes, I wonder how the hell I even got in that box at all. I don’t recall that box even being there for the first five decades of my life. Did it just grow up around me and enclose me? Or did I jump into it, not realizing how hard it would be to get out — not realizing how hard it would be to say, in a world of boxes, that boxes feel suffocating?

My therapist in Brattleboro used to say that all labels are a box. Labels can be useful — for services, for finding kindred spirits, for getting support. But when it comes down to it, the support really needs to be about very particular things, not about the box, because all of us have very particular needs. None of us look like what’s advertised on the outside of the box — not completely. For me, the main disability is auditory. For someone else, it’s tactile. For someone else, it’s multi-sensory. For someone else, it’s a whole other constellation. You can’t put all that on a box, no matter how big it is. The label will always be a vast oversimplification.

I’d like to get out of the box now.

I’d like to just be Rachel again.

Just Rachel. Rachel who needs quiet in order to hear. Rachel who needs clarity in communication. Rachel who sees word pictures in her mind. Rachel who loves organizing, and who has a passion for so many things, and who can focus like a laser beam on any of them. Rachel who never stops thinking. Rachel whose heart is broken by the world on a regular basis. Rachel who fiercely hopes for better.

That Rachel. The one I’ve always been. The one outside the box.

© 2013 by Rachel Cohen-Rottenberg

[The graphic shows an eye chart with the text "The only thing worse than being blind is having sight and no vision."]

It’s appropriate in this context to note that I spell out the text on the graphic in order to make the blog accessible to my blind readers. Because yes, indeed, my abundantly well-intentioned friends on the left: Blind people read. They even read blogs. On the Internet!

But I digress.

About your graphic… How can I put this? I’ll try to be as direct as possible: Using the word “blind” as a pejorative is not the way to go when you’re fighting for social justice.

Why? Okay, let me spell it out.

In this context, “blind” is entirely negative — nearly the worst thing that could happen to a person. And the people worse off? The ones who can literally see, but who have no vision for making the world a better place. Thus, blind people are just one tragic step above people who are too cowardly, or too selfish, or too morally bankrupt to care whether the world goes to hell in a handbasket.

You see, you lost me when you attempted to inspire people to moral action by appropriating the experiences of  disabled people and attempting to speak in their voices. You looked at blind people and assumed that blindness is a tragic condition, roughly synonymous with an absence of moral and philosophical vision. And then you used your outsider’s judgment of a situation about which you know nothing to bolster your cause. You fell into one of the worst tropes our society has to offer about disabled people: that disability is a physical and moral tragedy.

May I make a suggestion? When you’re fighting for social justice and general kumbaya, avoid the ableist language. Is that so hard?

© 2013 by Rachel Cohen-Rottenberg

I’ll be the first to admit that I’m guilty of not reaching out across the divide. Sometimes, when I see normal people coming down the sidewalk, I will cross the street. It’s not that I feel unfriendly toward them, exactly. It’s just that they’re so unpredictable. Will they be determined to overcome their challenges and give me a smile? Or will they give me a blank stare in response to my friendly hello? I’m ashamed to say that I’ve often taken the path of least resistance and simply avoided normal people altogether.

But however lost they are in their own worlds, they are part of our world, and it behooves us all to reach past our discomfort and welcome them as God’s angels here on earth. After all, we can’t consign them to endless rounds of small talk and cocktail parties, right? I know that they say they enjoy watching football every Sunday and trying out the latest local microbrew, but really, it’s just their normalcy talking. They don’t know how spare, how empty, how narrow their lives really are.

So it’s up to us to bring them out of their shells. I’ve walked among the normals and entered their world. And now I’m here to share some wisdom about how we can help them feel more included.

1. Breaking the ice

One of the easiest ways to get to know a normal is to simply walk right up to one and show how much you care. Don’t hesitate. The next time you’re walking across the parking lot at the supermarket and you see a normal getting out of his car, go right up to the person and show interest in his life.

I know what you’re thinking: How do I even begin? Start with the basics. Be straightforward. Ask him whether he was born normal.

Now, be prepared. It’s not uncommon for a normal person to respond to this question as though you’re nuts, but don’t be put off. Normal people aren’t used to others taking an interest. So be persistent. Ask a series of probing questions. I suggest the following:

Have you always been normal, or were you in some sort of terrible accident?

Did you mother take some sort of medication while she was pregnant?

Do you think your normalcy is environmental, genetic, or some combination of both?

Have you been vaccinated? Was your mother vaccinated?

Are you able to father children?

Now, if you’re talking to a well-adjusted normal person, he’ll be very appreciative of your questions, and he’ll have quite a lot to teach you about the experiences of real normal people — things you can’t learn in any book by any expert, I assure you. And he’ll give you all this information for free, so you won’t need to pay big bucks to go to a conference. After all, he has nothing better to do with his life, and he knows it.

But some normals don’t feel grateful for the attention. These sorts of normals are what we call Bitter Normals. They are angry at their normalcy and they will take it out on you. They do not care about your good intentions. They just want to make you feel as badly as they do. These are the kind of people who tell you to fuck off when you’re just being friendly. If you run into this sort of normal and you’re feeling particularly generous, you might want to end the conversation gracefully by saying, God bless you. I’ll pray for you. But if you’re not in that kind of mood, it would not be unreasonable to simply mutter asshole under your breath and walk away. After all, you’re only human.

2. Being helpful

Because normal people aren’t capable of governing their own lives — or even knowing their own minds — it’s up to the rest of us to be of the utmost assistance.

I know what’s going through your head right now: How can I possibly give these poor souls the help they need? And you’re right. The problems are wide and deep, and as a lay person, you shouldn’t be trying to make major decisions for these people. Where they live, what they do for work, and who they spend their time with are decisions best left to their caseworkers. But if you look closely, you will find a plethora of opportunities to be of service.

For example, suppose you are in the supermarket, and you see a normal woman in the produce section, trying to decide what kinds of apples to buy. Under no circumstances should you say to her, You know, I can never decide between Macintoshes and Granny Smiths myself. What do you think? How do you decide? A normal person is ill-equipped for that kind of conversation. It’s far too complicated and demanding. Instead, you must be proactive and take it upon yourself to choose the apples for her, based on your own best judgment. Do her teeth seem solid enough for Granny Smiths, or would she be better of with the softer Macs? Can she afford the Granny Smiths, or should she economize? Once you’ve made your decision, simply put a nice bag of apples in the woman’s shopping cart, give her a friendly pat on the shoulder, and be on your way. It will be a story she’ll tell for years to come.

3. Showing appreciation

A lot of us work with normal people, and good working relationships require mutual respect and expressions of support. Sometimes, we can feel a bit shy about expressing how inspired we feel by the ways in which normal people carry on with their lives, but we need to overcome our reticence. We need to express just how much normal people mean to us.

It’s not difficult in a work situation to express this sort of appreciation because, in contradistinction to the Bitter Normals who just want to drag us down into their misery, workplaces are full of people known as Super Normals. These are the people who have worked their asses off to overcome their normal deficits. They seem almost exactly like you and me. In fact, until you really get to know them (or read their ground-breaking and courageous books), you can’t even tell that some of them are normal at all.

These people make it easy. Choose from among the following expressions of goodwill:

If you hadn’t told me you were normal, I never would have guessed!

The way you walk across the office on your way to the coffee machine is so graceful! How do you do that?

Way to work that copier, dude! You’re an inspiration!

I’m sorry that your parents died in that terrible normalizing accident, but you’re a credit to their memory.

4. Welcoming your child’s normal friends

It’s inevitable. With normalcy approaching epidemic proportions, your child is going to have normal classmates, and these normal classmates will want play dates with your child. I know that your tendency will be to try to protect your child from being held back by some of the habits and behaviors of the normals, but embrace this opportunity. It has the potential for deep personal and spiritual growth for yourself and for your child.

Arrange a play date around the needs of the normal child. Your child may want to stay home and read a book, and he may not understand why little Johnny wants to play outside and pretend that every object he finds is a pretend gun, but use this experience as a teachable moment. Explain to your child that people are different, that little Johnny can’t help who he is, and that we must be accepting. You might even consider having the play date at a family-style restaurant at which little Johnny can be disruptive and draw the ire of the other patrons. When confronted, you can calmly explain that little Johnny is not your son, but that you are trying to broaden his horizons and give him the opportunity to circulate amongst regular people. The other patrons will either be ashamed of their own selfishness or think you an utter fool, but either way, you’ll be laying up treasures in heaven.

5. Sharing your knowledge

It goes without saying that normalcy is a tragic and pitiful state, but science is making new breakthroughs every day. While we don’t know the causes of normalcy and there is no cure, a number of excellent treatments are available.

Keep an eye out for news stories that mention the latest science, and make certain to send links to all of them to all of your normal friends. The proper form is to always use the subject header Did you see this? I thought it might help you! It doesn’t matter that multiple family members and friends will send the same links about the same junk science to the exact same people. What matters is that you show that you care.

Because this is what normal people want — to know that they’re not alone, to know that we want to help, and to know that we are thinking of them.

Just don’t let it take over your life.

© 2013 by Rachel Cohen-Rottenberg

In U.S. culture, visual and textual representations perpetuate the ideology of ableism, a set of perspectives and practices that make the able body the epitome of human worth. Like other forms of prejudice, ableism permeates our culture and rests on a number of distortions and largely uncritiqued assumptions. For this paper, I will look at the ways in which ableism is embedded in the anti-vaccination movement. I will do so by carrying out a qualitative content analysis of an anti-vaccination Facebook page called Great Mothers (and Others) Questioning Vaccines. In the course of the paper, I will show that the following ableist assumptions emerge from the Great Mothers page: disability is simply a medical issue; disability is a human tragedy; disabled people are passive victims; the able body is perfect; one should both ignore and stare at disabled people; disability is a story about individuals, but never about the society that creates disabling barriers; disabled bodies are economic and social burdens; and someone or something must be to blame for disability.

In this paper, I will begin by describing the methodology I will use for the content analysis. Then, in order to make clear the theoretical framework for my analysis, I will outline my core assumptions. From that point forward, I will devote a separate section to each of the themes about disability and the body that emerge from the Great Mothers page.

© 2013 by Rachel Cohen-Rottenberg

This week’s New York Times Op-Ed page features an utterly irresponsible article in which psychiatrist Paul Steinberg baselessly blames schizophrenia for mass shootings. In a truly chilling fashion, Dr. Steinberg argues that, in order to prevent such tragedies, we need to stop worrying our heads about the civil rights of people with schizophrenia:

[W]e have too much concern about privacy, labeling and stereotyping, about the civil liberties of people who have horrifically distorted thinking. In our concern for the rights of people with mental illness, we have come to neglect the rights of ordinary Americans to be safe from the fear of being shot — at home and at schools, in movie theaters, houses of worship and shopping malls.

Dr. Steinberg makes a pejorative and unsubstantiated association here between schizophrenia and the mass shootings that have taken place in 2012. He refers to shootings “at home and at schools” (a clear reference to the December 14 Newtown, Connecticut massacre), “in movie theaters” (a clear reference to the July 20 Aurora, Colorado theater shooting), “houses of worship” (a clear reference to the August 5 shooting at a Sikh Temple in Oak Creek, Wisconsin), and “shopping malls” (a clear reference to the December 11 shooting at a shopping mall in Portland, Oregon).

Terrifying events, to be sure. But before we start tossing people’s civil liberties out the window, let’s look at whether any of the perpetrators of these violent acts actually had schizophrenia:

As far as we know, Adam Lanza, the Newtown shooter, was not diagnosed with schizophrenia, nor have we heard evidence that he was delusional.

James Holmes, the shooter in Aurora, saw a psychiatrist who specializes in schizophrenia — which means precisely nothing regarding his own diagnosis. Her practice was not limited to people with schizophrenia. He has not been diagnosed with the condition.

Wade Michael Page, who murdered six people at a Sikh Temple, was a racist skinhead who no one has ever remotely hinted showed signs of schizophrenia.

Jacob Tyler Roberts, who was responsible for the shooting at the mall in Portland showed no signs of delusional thinking to anyone around him, including his girlfriend.

But that doesn’t stop Dr. Steinberg from coming up with two new culprits:

At Virginia Tech, where Seung-Hui Cho killed 32 people in a rampage shooting in 2007, professors knew something was terribly wrong, but he was not hospitalized for long enough to get well. The parents and community-college classmates of  Jared L. Loughner, who killed 6 people and shot and injured 13 others (including a member of Congress) in 2011, did not know where to turn.

Of course, Seung-Hui Cho was never diagnosed with schizophrenia in his lifetime. Psychiatrists like Dr. Steinberg have only done so post-mortem, and the more responsible ones acknowledge that they cannot make such a diagnosis with any certainty. The only mass murderer to whom Dr. Steinberg makes reference who has actually been diagnosed with schizophrenia is Jared Lee Loughner.

There are very good reasons that psychiatrists have to meet a client in person in order to render a diagnosis: second- and third-hand testimony is notoriously unreliable, and diagnostic assessments can take days to complete. Oddly enough, Dr. Steinberg seems to be aware that he is breaking the ethical standards of his profession by diagnosing people he has neither met nor treated:

I write this despite the so-called Goldwater Rule, an ethical standard the American Psychiatric Association adopted in the 1970s that directs psychiatrists not to comment on someone’s mental state if they have not examined him and gotten permission to discuss his case. It has had a chilling effect. After mass murders, our airwaves are filled with unfounded speculations about video games, our culture of hedonism and our loss of religious faith, while psychiatrists, the ones who know the most about severe mental illness, are largely marginalized.

As far as I can see, the only “unfounded speculations” here are coming from Dr. Steinberg. It is hard to imagine how an affluent psychiatrist in private practice could imagine himself to be “marginalized,” particularly when it comes to armchair diagnoses. Given that his entire piece further marginalizes an entire group of people who already far more likely to be the victims of violent crime than to be the perpetrators, the term rings especially hollow.

To his credit, Dr. Steinberg does acknowledge schizophrenia is not generally associated with violence, though he then turns around and contradicts himself:

The vast majority of people with schizophrenia, treated or untreated, are not violent, though they are more likely than others to commit violent crimes.

Dr. Steinberg rather skews the evidence here. In fact, people with schizophrenia are not more likely to commit violent crime when one factors in the presence of substance abuse. A PLoS study found that, when controlling for the presence of drug and alcohol abuse, people with psychosis are no more likely to commit violent crime that people without psychosis:

Importantly the authors found that risk estimates of violence in people with substance abuse but no psychosis were similar to those in people with substance abuse and psychosis and higher than those in people with psychosis alone. (Gulati et al. 2009)

In other words, people with no psychosis who abuse alcohol and drugs have a higher risk of committing a violent crime than people with psychosis who do not abuse alcohol and drugs, and a similar risk to people with psychosis who do. The factor to be looking at is drug and alcohol abuse, not schizophrenia.

That point seems to have been lost on Dr. Steinberg. He should know better. Shame on him.

References

ABC News. “Clackamas Town Center Shooting: Who Is the Alleged Shooter?” http://abcnews.go.com/GMA/video/clackamas-town-center-shooting-jacob-roberts-alleged-shooter-17959547. December 13, 2012. Accessed December 27, 2012.

The Atlantic. “Diagnosing Adam Lanza.” http://www.theatlantic.com/health/archive/2012/12/diagnosing-adam-lanza/266322/#. December 13, 2012. Accessed December 27, 2012.

Billeaud, Jacques. “Trial not likely for Jared Lee Loughner in 2012.” Boston.com, January 6, 2012. Accessed December 27, 2012. http://www.boston.com/news/nation/articles/2012/01/06/trial_not_likely_for_jared_lee_loughner_in_2012/.

Gulati, Gautam, Louise Linsell, John R. Geddes, and Martin Grann. “Schizophrenia and Violence: Systematic Review and Meta-Analysis.” PLoS Med 6, no. 8 (2009). doi:10.1371/journal.pmed.1000120.

Laris, Michael, Jerry Markon, and William Branigin. “Wade Michael Page, Sikh temple shooter, identified as skinhead band leader.” The Washington Post, August 6, 2012. Accessed December 27, 2012. http://articles.washingtonpost.com/2012-08-06/world/35491487_1_end-apathy-sikh-temple-skinhead-band.

PBS News Hour. “Alleged Colorado Shooter Saw Schizophrenia Expert.” http://www.pbs.org/newshour/bb/social_issues/july-dec12/colorado_07-27.html. July 27, 2012. Accessed December 27, 2012.

Psychiatric News Alert. “People With Schizophrenia More Likely to Be Victims, Not Perpetrators of Violence.” http://alert.psychiatricnews.org/2012/05/people-with-schizophrenia-more-likely.html. May 10, 2012. Accessed December 27, 2012.

Steinberg, Paul. “Our Failed Approach to Schizophrenia.” The New York Times, December 25, 2012. Accessed December 27, 2012. http://www.nytimes.com/2012/12/26/opinion/our-failed-approach-to-schizophrenia.html?_r=0.

Welner, Michael. “Cho Likely Schizophrenic, Evidence Suggests.” ABC News, April 17, 2007. Accessed December 27, 2012. http://abcnews.go.com/Health/VATec h/cho-schizophrenic-evidence-suggests/story?id=3050483#.UNxJWnfLBQF.

© 2012 by Rachel Cohen-Rottenberg

Despite a number of clarifications in The New York Times and on ABC News, NBC News, and CNN that Asperger’s is not a predisposing factor for premeditated violence, the spurious association of Asperger’s with the violence in Newtown, CT is still strong. In part, the media is responsible for not having clarified early on that yes, Adam Lanza shot 27 people and yes, Adam Lanza was apparently autistic, and no, one had nothing to do with the other. Such failures were rife. For example, in exploring a possible explanation for the shooting, Dr. Xavier Amador opined on Piers Morgan Tonight that people with Asperger’s are missing an essential element of humanity:

Well, actually, a symptom of Asperger’s, and this is one report coming out which may or may not be true, is something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.

But the media’s response is only a symptom of a much larger problem. Its willingness to blame Asperger’s is a reflection of a cultural association between disability and evil that has lasted for centuries. As Colin Barnes writes:

Throughout the Middle Ages, disabled people were the subject of superstition, persecution, and rejection. Haffter (1968) has pointed out that in medieval Europe disability was associated with evil and witchcraft. Deformed and disabled children were seen as ‘changelings’ or the Devil’s substitutes for human children, the outcome of their parents’ involvement with the black arts of sorcery. The Malleus Maleficarum of 1487 declared that these children were the product of the mothers’ intercourse with Satan… Protestant reformer Martin Luther (1483-1546) proclaimed that he saw the Devil in a profoundly disabled child. If these children lived, Luther recommended killing them.” (Barnes 2010, 21)

Nineteenth- and twentieth-century eugenicists picked up this connection between disability and depravity, believing “that there were genetic links between physical and mental impairments, crime, unemployment and other social evils” (Barnes 2010, 26). The linkage has come down to the present day in the pernicious belief that disability is synonymous with narcissism and anti-social behavior (Siebers 2011, 34-35).

I’ve read a number of comments online that suggest that autistic people and autism parents are overplaying the scapegoating of Asperger’s. People say that the mainstream media has issued its clarifications and that the problem is solved. Unfortunately, it’s not that easy. Once this iteration of the cultural narrative about disability hit the airwaves, it quickly took root among ordinary people. Giving life to a well-worn untruth while people are in a state of nearly irrational fear is a difficult thing to undo. To give you a sense of just how deep the damage goes, I offer the following examples.

On the Volconvo forum, one commenter refers to people with autism and mental illness as “broken-minded defects” who are “dangerous” and whom society needs to monitor and imprison inside locked wards:

A commenter on a TIME article suggests that autistic people are “mutants” who need to be placed in “psychiatric facilities” and ultimately removed from the gene pool for the good of society:

And then there was the person who started a Facebook page and called for the killing of autistic children. (To its credit, Facebook quickly removed the page.)

This kind of scapegoating has begun the inevitable creep off the major news sites and social media and into the lives of ordinary autistic people and their families. Three friends have given me permission to share their experiences.

Here is the story told by my friend Sara, a woman with Asperger’s. While standing at the post office five days after the tragedy, she spoke to a woman, an Ivy League graduate, who said that Asperger’s — and Asperger’s alone — had caused the Sandy Hook shooting. Sara posted the following on her Facebook status:

Another friend describes a situation in which a false belief in a link between autism and violence caused his wholly nonviolent autistic child to become suspect in the eyes of a relative:

Finally, my friend C describes a more frightening scenario. Her son J, who is 14 years old, had gone to Wal-Mart to look for a Christmas tree. He has Asperger’s and bipolar disorder, and people in his community are aware of his diagnoses. He was wearing headphones to block out sensory input, and, at one point, attempted to find a quieter place in the store. He had his hand on a price list in his pocket when someone who knew him went into a panic — a panic that resulted in the young man’s injury:

Like Trayvon Martin in his hoodie, the scary guy on the block appears to be, in the minds of some people, the kid with Asperger’s with his hands in his pockets. I’m just waiting for someone to suggest that, as Geraldo Rivera said about black men giving up their hoodies, young men with Asperger’s should wear pocketless clothing.

The stunning level of irrationality and fear being leveled at people with autism is tremendous cause for concern. In the face of this scapegoating,  autistic people and autism parents are countering with positive images of autistic children and adults that show us as full human beings — ordinary, extraordinary, beautiful, and proud. To see these images, please go to the following Facebook pages:

Autism Shines
Autistics, Not Monsters
Disability and Representation

Let’s spread the word to end the scapegoating. And let’s keep doing it, now and always, wherever and whenever we can.

Note: I invite you to share your experience in the comments. If you write about something that one of your children has experienced, please use pseudonyms for yourself and for all concerned. Thank you.

References

Barnes, Colin. “A Brief History of Discrimination and Disabled People.” In The Disability Studies Reader, edited by Lennard J. Davis, 20-32. New York: Routledge, 2010.

Christopher, Tommy. “Piers Morgan Quack Says People With Autism Lack Empathy: ‘Something’s Missing In The Brain’.” Mediaite, December 14, 2012. Accessed December 24, 2012. http://www.mediaite.com/tv/piers-morgan-quack-says-people-with-autism-lack-empathy-somethings-missing-in-the-brain/.

Facebook. www.facebook.com. Accessed December 24, 2012.

— “Autism Shines.” http://www.facebook.com/AutismShines?fref=ts. Accessed December 24, 2012.

— “Autistics, Not Monsters.” http://www.facebook.com/AutisticsNotMonsters?ref=ts&fref=ts. Accessed December 24, 2012.

— “Disability and Representation.” http://www.facebook.com/DisabilityAndRepresentation. Accessed December 24, 2012.

Falco, Miriam. “Groups: Autism not to blame for violence. CNN, December 19, 2012. Accessed December 24, 2012. http://www.cnn.com/2012/12/17/health/connecticut-shooting-autism/index.html.

Fox, Maggie. “Asperger’s not an explanation for Lanza’s Connecticut killing spree, experts say.” NBC News, December 18, 2012. Accessed December 24, 2012. http://vitals.nbcnews.com/_news/2012/12/18/15994353-aspergers-not-an-explanation-for-lanzas-connecticut-killing-spree-experts-say?lite.

Gilman, Priscilla. “Don’t Blame Autism for Newtown.” The New York Times, December 17, 2012. Accessed December 24, 2012. http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html.

Nano, Stephanie. “Experts: No Link Between Asperger’s, Violence. ABC News, December 16, 2012. Accessed December 24, 2012. http://abcnews.go.com/US/wireStory/experts-link-aspergers-violence-17987339#.UNj7VHfLBQG.

Rochman, Bonnie. “Guilt by Association: Troubling Legacy of Sandy Hook May Be Backlash Against Children with Autism.” TIME, December 19, 2012. Accessed December 24, 2012. http://healthland.time.com/2012/12/19/guilt-by-associationtroubling-legacy-of-sandy-hook-may-be-backlash-against-children-with-autism/.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Volconvo. “Kindergarten isn’t just about identifying colors, shapes and sizes anymore.” http://www.volconvo.com/forums/society-rights/43038-kindergarten-isn-t-just-about-identifying.html. December 14, 2012. Accessed December 24, 2012.

© 2012 by Rachel Cohen-Rottenberg

This Friday, there is an equally disgraceful piece called My brother is not Adam Lanza, but he could be, in which the author, under her own name, with a photo of her brother, says that he could be the next Adam Lanza. Or that he could have been. If his parents hadn’t done such a good job. And he weren’t such a nice person. Or something.

Please, dear readers, answer me two questions: What makes people unable to restrain themselves from blowing the privacy of family members? And what compels them to put a photo of a family member in a piece in which said family member is likened to Adam Lanza?

The author acknowledges that Asperger’s isn’t associated with violence. She acknowledges that her brother, who has Asperger’s, has never committed a violent act in his life. The closest he has ever come has been to get up into her face, with his fists, once.

It was only years later as I watched my brother shaking with rage, as he struggled to hold himself together, with his fist clenched inches from my face that I understood how intense frustration and pain could explode out of a person.

…

He has never hit me, or any family member, although there are times he uses up every ounce of self- control restraining himself. This incredible effort and bravery, is testament to his goodness.

On these rare occasions I wonder what it would take to push him over the edge. Is that the difference between him and Adam Lanza?

So, apparently, in the mind of Pamela Mirghani, shaking with rage at a family member, if the person shaking with rage happens to have Asperger’s, suggests a risk for committing mass murder. I can’t even begin to parse the logic there, because there isn’t any. The statement is completely prejudicial. Does she realize how many non-autistic people get up in other people’s faces with their fists, and worse, and don’t go on to shoot up schools?

Millions of people, all over the world, feel like hitting people and they don’t do it. And millions of people, all over the world, feel like hitting people and — unlike her brother — they do. Does that make all of these people potential mass murderers? Of course not. And even if it did, why in God’s name link it to Asperger’s, especially when she admits that Asperger’s isn’t linked to violence at all:

While violence may not be linked to autism, frustration is. Without the tools, help and support to cope with that frustration it can overwhelm the sufferer.

I am not Adam Lanza’s sister. My brother is NOT Adam Lanza. But he could have been, maybe could still be under certain circumstances. And acknowledging this is not wrong.

Yes, folks. She just said that her brother with Asperger’s, who has never been violent, who on “rare occasions” has gotten so upset that he wanted to hit someone, could become a mass murderer under certain circumstances — purely because his Asperger’s makes him frustrated. Of course, that blithely ignores the fact that all studies show that Asperger’s is not associated with premeditated violence, and that there is no evidence that mere frustration makes someone load weapons into his car, drive to a school, and commit murder and mayhem. But hey, who needs studies  — not to mention common sense — when you can defame and violate the privacy of a family member for no good reason?

So yes, Pamela. Acknowledging something, when it’s entirely false, prejudicial, and defamatory, is wrong. Saying that anyone with Asperger’s could become a mass murderer under certain circumstances, simply because the person has Asperger’s, is wrong. Saying that your own brother could become a mass murderer, merely because he shares a diagnosis with someone who just committed an unthinkable act, is wrong. There is nothing about Asperger’s that predisposes people to premeditated violence. Nothing at all.

To suggest that your brother with Asperger’s is capable of such a thing, purely because of his disability, not only tars and feathers him, but also tars and feathers everyone who has Asperger’s.

Do you know what that means? Do you know the harm that could come from articles like this one? Do you know the kind of fear that autistic people are feeling right now because we’re being scapegoated in the media for the evil that was done last week? Any idea at all? Do you know how this stigmatizes your brother? Do you understand the humiliation involved in calling him a potential mass murderer? Do you grasp the fact that it puts your brother — and all of us — in potential danger for you to say such a thing in public?

Great job, Pamela. What a nice Christmas present to your brother, to autistic people, and to those who love us. Merry Christmas to you, too.

Sources

The Huffington Post. “‘I Am Adam Lanza’s Mother’: A Mom’s Perspective On The Mental Illness Conversation In America.” http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html. December 16, 2012. Accessed December 16, 2012.

Mirghani, Pamela. “My brother is not Adam Lanza, but he could be.” National Times. December 21, 2012. Accessed December 21, 2012. http://www.watoday.com.au/opinion/my-brother-is-not-adam-lanza-but-he-could-be-20121221-2bql1.html.

© 2012 by Rachel Cohen-Rottenberg

Note: Anyone who would like to protest the nature of Pamela Mirghani’s article is welcome to share a link to this piece in an email to news@watoday.com.au. You can also find WA Today, on whose site the piece appears, on Twitter at @watoday.

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This screenshot has been making the Facebook rounds; I don’t know where it originated from and I’ve done my best to remove the identifying information. Seeing this makes me want to start sobbing and run and hide from the world, but instead of lying on the floor in the fetal position, I thought I would try to calmly respond to this, in the hopes that Elisabeth might see it.

Elisabeth, my son is autistic; I call him Child 1. He’s 10 years old, will be 11 in January. His autism affects him in a way that causes him to spend a good deal of time “lost” in his own thoughts. When you talk to him, he is very likely to respond to you in a way that involves whatever he is thinking about (elevators, subway trains, etc.) and oftentimes it doesn’t make a lot of sense. He also flaps his hands and runs back and forth a lot. He doesn’t like it when other people try to engage with him, particularly people his own age. He likes to be alone. If you were to meet him, it would be obvious to you almost immediately that there was something “different” about him. You wouldn’t necessarily know what was going on, but you would know that there was something happening.

Sometimes he gets angry with me, usually because he doesn’t get his way, much like any other kid, and when he does he will hit me. He doesn’t hit hard, he doesn’t cause injury, and he does it only to express his frustration. He feels frustrated because he’s not getting what he wants but also because he has a very difficult time explaining to me how he is feeling. Have you ever been having a conversation and suddenly you can’t find the word to describe what you want to say but you don’t know why? You might say it’s “on the tip of my tongue,” or something similar. Imagine if all of your words were always “on the tip of your tongue.” That’s how my son feels almost all of the time, and as you hopefully are able to understand, that can be a very frustrating feeling. If you felt like that all the time, you might want to hit me, too: in the moment.

But then the moment is over, and my son’s frustration will subside, and he will go about his business just as happily as before. This is typical autistic behavior, and it comes with differing levels of severity depending on the individual person. What is not typical autistic behavior is somebody who will irrationally direct violent rage onto a person who is not immediately connected to their situation. They will not spend any time plotting revenge, or planning what they will do next; they will not drive to a different location and shoot people they don’t even know. When the frustration is gone, it is gone.

My son is who you’re talking about when you refer to “these monsters,” and I’m writing this now because it’s so important to me that you know about him, and others likes him. Autistic people are not “sick fucks.” My son is not a “sick fuck.” He is a sweet, beautiful, smart child, who is funny and warm and caring, just like most autistic people are, regardless of their ability to communicate. Elisabeth, what happened in Connecticut didn’t happen because the shooter was autistic.

Here’s another point of information for you to know: 46% of autistic children have reported being bullied in middle school and high school. This happens for a number of reasons, most notably because 1. They are noticeably “different,” as I mentioned about my son earlier, and 2. There is a good deal of misinformation out there about autism, a lot of which is being spread by an irresponsible media at the moment, and your words here cause harm. You are helping to spread incorrect information about my son and you are causing him harm. 

You need to know that my child has a much greater chance of being a victim of violent crime than of being a perpetrator. You need to know this, Elisabeth; you need to be aware of how your words cause harm. I understand your anger at the situation, I’m angry, too; and I understand your need to try to find meaning in why 20 babies and 6 adults had to die, but I promise you, Elisabeth, I promise: autism is not the reason for this. 

I’m happy to talk with you more about this privately if you’d like to contact me. jillsmo at gmail.com; I promise I’m a nice person and my goal here is to educate, not to cause a fight.